Poster Presentations

. 2020 Apr-Jun;26(2):237–268.

Poster Presentations

PMCID: PMC7444572

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 01: A MODEL TO PROVIDE SUPPORTIVE AND CARE CONTINUITY FOR PALLIATIVE CARE PATIENTS AT HOME

Mahesh Krishna ¹, Sridhar Pillalamarri ¹, Sundararajan Srinivasan ¹, Amelia Michael ¹, Raghavendra Ramanjulu ¹

Introduction and Objective: People with chronic morbidities would like to be cared in their homes in presence of their loved ones. PC at home for chronic illnesses is about providing comfort desired by the patient and family members. It helps reducing economic, psychological, social and physical burden on the family ensuring patient's quality of life. Based on Cipla home care studies, Smart Phone Applications in Palliative Home Care and our own survey, we took up the following objectives, for patient care at home: a) Continuing the care from the Primary Specialist, b) Episodic management, thereby preventing avoidable emergency visits and re-admissions.

Methods: Over 15 months, we have evolved a blended solution working with many PC specialists in Bangalore and caring for 70+ patients. This solution combines clinical telepresence technology with clinical collaboration model and clinical workflows, protocols and interventions, to provide continuity of care. A Ubiqare Physician trained in palliation carries out the care protocol as specified by the specialist, extending his care and co-ordinates with care providers, supervises clinical interventions as and when needed, ensuring patient's comfort at home.

Results: We share the cohort-metrics that reflect the care outcomes, illness trajectories, rate of episodes, readmission rates, observed demand for medical attention and feedback.

Conclusion: We have been able to demonstrate the feasibility and effectiveness of quality of follow-up care by extending primary specialist's care through their involvement, coordinated and managed by a Ubiqare doctor supported by clinical telepresence, to provide care-continuity and supportive care to patients at home.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 02: ETHICAL DILEMMAS OF A PALLIATIVE CARE NURSE IN AN NGO SETTING

Subhadra ¹

Introduction: Being a palliative care nurse in an NGO, I used to go to places where patients are in need: their homes, shelter-homes, hospitals-private/public and streets. Practicing PC will put you in dilemma when the health system actually has not incorporated PC. This is based on an interview done with a palliative care nurse working in an NGO in Tamil Nadu.

Objectives: To understand the ethical dilemmas faced by palliative care nurse in NGO setting.

Materials and Methods: Case study on an experience – In-depth interview was done to understand the ethical dilemmas faced by PC nurses in NGO settings. Data coded and analyzed manually.

Results: Shortage of resources, low acceptance for health workers from NGO in formal healthcare settings, poor understanding on PC by formal healthcare professionals and lack of integration of PC into health system were leading to several ethical dilemmas for PC nurses in NGO settings. This is when they consider patients and their families as ultimate beneficiaries. But non-maleficence is another ethical principle that forces them to close their eyes while attending patients in formal health system.

Conclusion: While respecting autonomy of patients, following ethical principles like beneficence, there are times when PC nurses struggle to maintain justice and non-maleficence. This case study is one such example. This can be solved when the formal health system imbibes and practice PC concepts while providing care to all their patients with life-limiting conditions.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 03: TEACHING COMPASSION AND PALLIATIVE CARE PRINCIPLES THROUGH MEDICAL HUMANITIES IN NEPAL. STUDENTS’ PERCEPTIONS OF A NEW COURSE

Amanda Helen Douglas ¹, Madhusudan Subedi ¹, Rajesh Gongal ¹

Introduction: Medicine is termed a “caring profession”, however, literature describes a lack of compassion in healthcare. Palliative care necessitates a compassionate approach. Medical humanities (MH,) recently introduced in western medical schools, aims to address this seeking to develop understanding of human experiences through humanities, arts and social sciences. In 2018, Patan Academy of Health Sciences introduced 8-week MH course for new medical students. Exploring themes of: ageing, disability, health injustice, death and dying, through: film, literature, art and poetry. Students reflected on experiences through drama and writing. This study evaluates MH from the view of students, exploring their perceptions and experiences.

Methods: After concluding MH, all 65 students completed semi-structured surveys. Comprising 8 items on 5 point-Likert scale related to perceptions and 3 open questions. Quantitative data was analyzed. Results expressed as mean, standard deviation and percentage. Qualitative data was coded and analyzed thematically.

Results: Overall students’ perception were strongly positive. 98.5% agreed/strongly agreed MH was enjoyable, interesting, should continue. 97% agreed/strongly agreed it challenged thinking; 96.9% that it was relevant to future careers. 96.9% agreed/strongly agreed MH helped understanding of doctor's caring role, 92.3% it made them better doctors. 3 themes related to perceptions emerged from open responses: enjoyable and interesting, positive personal impact, valuable and important.

Conclusions: PAHS’ students had positive perceptions of MH, recognizing it's importance and personal impact. MH challenged students’ perceptions and thinking, by exploring patients’ struggles and encouraging empathy. Significantly students believed this would make them better doctors. Expansion of MH across undergraduate teaching in the region should be considered.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 04: VOLUNTEERING AND PALLIATIVE CARE ARE TANGLED

Preetha Mahesh ¹

Introduction: SOUL Palliative Care Foundation was started two years back with home as office. My drive to support people during their life-limiting conditions was the only reason behind my work which started during my teenage. Within a year, we managed to find an office and started receiving more support from like-minded people.

Objectives: To understand the activities and challenges faced by SOUL Palliative Care Foundation; To understand the role of non—medical persons in palliative care.

Materials and Methods: Data of patients served by SOUL was analyzed to understand beneficiaries – age groups, disease type, gender and location. Interviews with the team helped in collecting other details: kind of support given, challenges and vision.

Results: SOUL has reached more than 250 patients since inception. Majority patients are women and most of them above 50 years. There are child beneficiaries as well. Support is given in the form food kits, financial aid for medicines, wheelchairs, beds and so on. Volunteers in every region contribute actively by mobilizing resources, spending valuable time with patients, and in other day-to-day activities. The crux part is done by our nurses and doctors who travel across the state to reach patients in need.

Conclusion: SOUL is a very small team that reaches many in life-limiting conditions. Even though the state government had initiated palliative care program after training healthcare professionals, we understand the role of groups like SOUL will never diminish seeing the enormous unmet needs of patients and their families and the disease trend in today's world.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 05: ULTRASOUND-GUIDED SERRATUS ANTERIOR PLANE BLOCK FOR POSTOPERATIVE ANALGESIA IN THORACOTOMY SURGERY: A CASE SERIES

Ananya Bhorali ¹, Mridupaban Nath ¹

Introduction: Thoracotomy requires a very painful incision, involving multiple chest muscle layers, rib resection. Acute pain after thoracotomy is due to retraction, resection, fracture of ribs, dislocation of costovertebral joints, injury of intercostals nerves and further irritation of pleura by chest tubes. Treatment of acute post-thoracotomy pain is particularly important not only to keep the patient comfortable but also to minimize pulmonary complications. Ultrasound-guided serratus anterior plane block (SAPB) provides anaesthesia and analgesia to lateral thoracic wall.

Objective: To study the effect of Ultrasound guided SAPB in providing post-operative analgesia in thoracotomy surgeries.

Methods: The study was conducted under the Department of Anaesthesiology and Critical Care, GMCH. We present a series of 10 patients where ultrasound-guided SAPB was used as a method of post-operative analgesia in thoracotomy. 0.2% Ropivacaine was used as local anaesthetic used after the induction prior to skin incision. After the surgery, patients were assessed for analgesia at 2,4,6,8,16 and 24 hours using Visual Analogue Scale (VAS) score.

Results: All the patients were pain free till 18^th h after surgery. VAS score of more than 3 was first noted in 4 patients on 18^th and 20^th h and in rest 6 patients by 24^th hr.

Conclusion: Ultrasound guided SAPB is an effective and excellent method for postoperative analgesia in thoracotomy and is cost effective too.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 06: FOREVER ETCHED: EXPERIENCES OF PRIMARY CAREGIVERS IN HOME-BASED PALLIATIVE CARE

Aneka Paul ¹

Introduction and Objectives: People with chronic conditions like cancer, neurological diseases, end-stage organ failure, and communicable diseases like HIV/AIDS, etc, have pain, other symptoms and psychosocial distress, which can dramatically decrease quality of life, burden the family economically and emotionally, and strain the health care system. Caregiving of such patients in India is largely managed at home, by untrained relatives, yet there is little documentation of how the family perceives palliation or their needs while providing home-based palliative care. This study explores retrospectively, caregivers’ experiences of caring for a relative with a life-threatening or life-limiting condition, at home.

Materials and Methods: This qualitative phenomenological study was conducted in three Indian cities, in conjunction with three leading NGOs providing home-based palliative care services. In-depth interviews were conducted with bereaved primary caregivers of 15 terminally-ill patients. Respondents were selected purposively, with a mix of ailment of patient, caregiver's relationship to patient, and gender of caregiver.

Results: Families employ a range of activities – family get-togethers and outings, prayers and reading religious texts – to cope with stress of active caregiving and bereavement. NGOs need to formalize bereavement visits to each family under their care. Providing PC in other modalities – in-patient, hospice, day-care, etc – within a given geographical area, could supplement home-care services. Active caregiving is provided mostly by a close female relative.

Conclusion: Expansion of home-based palliative care is imminent under India's National Health Policy 2017. Understanding the experiences of primary caregivers would allow designing a more nuanced and holistic service for implementation.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 07: PALLIATIVE CARE FOR A BREAST CANCER PATIENT: A CASE HISTORY

Ayush Garg ¹

Introduction: Palliative care doesn't always mean an active treatment but may be in the form of counseling and psychosocial support. We present a case of metastatic breast cancer where psychosocial principle of palliative care was applied.

Case History: Twenty-year old breast cancer patient was treated with surgery, radiotherapy and chemotherapy before it metastasized to lung and liver. The disease was progressing and she was deteriorating with breathlessness. Father of the patient informed about the marriage of his younger daughter after 1 week, and was not able to take care of the patient. We assured him to help during admission while he continues preparations for the marriage. The patient developed pleural effusion and she was treated by Pulmonologist. One day before marriage, the condition started deteriorating. Consent on phone was taken and we shifted the patient to ICU. It was very difficult decision for father. At this time, we volunteered to take charge of the difficult situation. We assured the family to go ahead with the marriage preparations while we would be taking care of their patient. The patient expired on the day of marriage and the father was humbly informed about the bad news.

The father approached the hospital authorities after 2 days to collect the body of his daughter. They were very grateful about the fact that the help that they got from our team of doctors.

Conclusion: In terminal phase of cancer, we need to approach patient as family physician rather than treating oncologist.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 08: “UNARV” A PALLIUM INDIA INITIATIVE FOR THE BEREAVED

M Indira ¹

Introduction: Palliative care does not end with death of a person. The period of bereavement can be very traumatic for the family due to several psychosocial problems: grief, loneliness, depression, social pressures, and spiritual issues. A bereavement support group ‘UNARV’ was formed in 2010 under Pallium India to address these problems. This group includes families of deceased patients registered with Pallium India from all socio-economic strata. It provides a platform to share their grief with others. ‘UNARV’ is moderated by volunteers trained in palliative care.

Methods: The bereaved families were contacted after the death of the patient and invited to attend the monthly UNARV meeting. Separate groups for adults and children. Periodical evaluation of the beneficiaries was done by telephonic conversation, personal interactions and questionnaire.

Results: Over a decade more than 300 families attended the meetings and it helped nearly 80% of group members to move ahead in life with confidence and positive attitude. The outcomes include building up resilience, new friendship circles, new insight into one's own problems, etc.

Conclusion: In this age of nuclear families, bereavement support is an absolute necessity. ‘UNARV’ has benefitted many bereaved people and for some this has been a lifeline.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 09: MANAGEMENT OF PAIN WITHOUT MEDICATIONS

Cheekati Anusha ¹

Introduction: Non-pharmacological interventions to alleviate pain rely on the inhibition of pain signaling. This method utilizes ways to alter thoughts and focus concentration to better manage and reduce pain.

Objective: To show that non-pharmacological therapy complements pharmacological treatment to relieve pain and anxiety in many patients in palliative care.

Methods: In terminal diseases where the scope for treatment narrows, the following methods can be used: Education and psychological conditioning; hypnosis; Comfort therapy; Physical and occupational therapy; Psychosocial therapy/counseling; Neurostimulation

Results: Research has proved that non pharmacological management of pain holds lot of importance for palliative care patients, especially in their end of life. It is proved once and again that these methods help terminal patients handle their anxiety and fear more healthily.

Conclusion: Non-pharmacological options are very wide and affective and make significant difference to the patient's overall well-being.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 10: ANTIBIOTIC SNAPSHOT: A RETROSPECTIVE ANALYSIS OF ANTIBIOTIC PRESCRIBING HABITS AMONG INDIAN PALLIATIVE CARE Physicians

David Thomas ¹, Mary B Carter ¹, Amritha Thampi ¹, Navjot Vidwan ¹

Background and Objectives: Evaluating antibiotic prescribing habits is crucial to limiting spread of antibiotic resistant infection. However, antibiotic prescribing habits among Indian PC physicians have not been fully explored. The purpose of this study was to analyze antibiotic prescription data collected from Pallium India, in order to identify common antibiotics prescribed for infections among Indian PC patients.

Materials and Methods: Pallium India physicians use paper Antibiotic Order Forms (AOF) when prescribing antibiotics in the outpatient, inpatient and home visit settings. These forms document patient symptoms, infection types and antibiotics ordered. Following approvals from the University of Louisville Institutional Review Board and Pallium India Institutional Ethics Committee, data were retrospectively collected from all AOFs completed for adult patients treated in 2017 and 2018 and analyzed using descriptive statistics to determine frequencies.

Results and Conclusion: 318 AOFs met inclusion criteria and were analyzed. Overall, the most common antibiotics prescribed were Augmentin [68 forms (21%)], Amoxicillin [63(20%)], Nitrofurantoin [42(13%)] and Ciprofloxacin [41(13%)]. The most common types of infections reported were respiratory [103 forms (32%)], urinary tract [100(31%)] and skin [84(26%)]. The most common antibiotic prescribed for each type of infection was Amoxicillin (38% of respiratory), Nitrofurantoin (42% of urinary tract), and Augmentin (32% of skin infections). This study highlights antibiotic prescribing habits among PC physicians treating a limited sample of PC patients in Kerala, India. Efforts to review antibiotic prescribing habits are critical for antibiotic stewardship and preventing spread of antibiotic-resistant infection. Future study should include a larger sample size from multiple centers in order to provide a more complete description of antibiotic treatment in Indian PC.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 11: COMPARATIVE STUDY OF PSYCHOLOGICAL PAIN (DEPRESSION) BETWEEN MALE AND FEMALE CANCER PATIENTS AT STATE CANCER INSTITUTE GUWAHATI

Pranami Sarmah ¹, Pompi Roy ¹, Dipankar Dakua1 ¹

Any serious illness can impact mental health. It is one of the major concerns for patients, caregivers and their loved ones going through cancer. Receiving a potentially fatal diagnosis, going through treatment & learning to live with limitations can cause depression in many patients as can side effects from the treatment. Cancer diagnosis can have a large impact on patients, families and caregivers. Feelings of depression, anxiety, fear are common and normal responses to this life changing experience. Changes in body image can affect self-esteem and confidence. Family and work roles may be altered. Physical symptoms such as pain, nausea or extreme tiredness are more likely to cause emotional distress. People might fear death, suffering, pain or unknown things that lie ahead. It is normal to grieve over changes that cancer brings to a person's life. But if a person has been sad for a long time or is having trouble carrying out day to day activities, he may have clinical depression (1 in 4 people with cancer have clinical depression). The present researchers attempted to compare one of the major Psychological pain of cancer patients i.e. depression: between Male and Female patients of State Cancer Institute, Guwahati. To collect the data Beck Depression Inventory (BDI) was used. The sample size was 100 (50male, 50 female). Data were statistically treated by finding mean, SD and percentage on Depression. The results of the present research will be discussed in detail in the poster.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 12: ROLE OF ULTRASOUND IN CHRONIC PAIN MANAGEMENT – A REVIEW

Gyanshree Khaund ¹, Trina Sen ¹

Introduction: Pain is one of the most common conditions that hinders the quality of life of patients on a regular basis. Ultrasound can be used both as a diagnostic and therapeutic procedure for pain management. The ability of ultrasound to provide detailed anatomic visualization while avoiding radiation exposure continues to make it an appealing tool for many practitioners for chronic pain management. This review will present the most recent evidence regarding the use of ultrasound-guidance for the performance of interventional procedures in the treatment of chronic pain.

Objective: The objective of this study is to evaluate the effectiveness of ultrasound both as a therapeutic and a diagnostic procedure in the treatment of chronic pain.

Methods: Using PRISMA guidelines, a search of the PubMed Central (The Cochrane Library), Web of Science and Scopus databases was performed to retrieve randomized controlled trials that evaluated role of ultrasound (continuous and pulsed) in patients with chronic pain.

Results: Different studies have been done to compare the role of ultrasound and different other modalities for the management of pain and studies have concluded ultrasound to be effective in pain management.

Conclusion: Ultrasound-guided techniques for common chronic pain management procedures continued to be studied frequently, because of their potential to visualize important neurovascular structures and to avoid those structures, while minimizing radiation to the patient. Therapeutic ultrasound is frequently used in the treatment of shoulder, knee and hip pain and is often combined with other physiotherapeutic modalities.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 13: PREFERENCES FOR COMMUNICATION AND CONCERNS OF CAREGIVERS OF ADULT PATIENTS WITH ACUTE LEUKEMIAS REFERRED TO A SPECIALIZED PALLIATIVE CARE UNIT

Jyothsna Kuriakose ¹, Jayita Deodhar ¹, Arunangshu Ghoshal ¹, Anuja Damani ¹

Introduction and Objectives: There is a dearth of literature about communication preferences and concerns of caregivers of patients with acute leukemias in low-middle income countries. This study aimed to examine caregiver concerns and preferences for disclosure of diagnosis/prognosis to adult patients with acute leukemias referred to Specialized Palliative Care (SPC) Unit in a tertiary cancer center in India.

Materials and Methods: Case records of adult patients with acute leukemias referred to SPC over 9 months duration were retrospectively analyzed. Records with missing data were excluded. Data collected included age/gender/socioeconomic status/diagnosis, caregiver/patient awareness of diagnosis/prognosis, readiness to disclose diagnosis/prognosis to the patient and their primary concerns. The statistical analysis was done using SPSSv23.0.

Results: 78 patients were included. Mean age was 42 years. 71.8% were males. 70% belonged to lower socioeconomic strata. 43 patients had acute lymphoid leukemia and 35 had acute myeloid leukemia. All primary caregivers and 88.5% of patients were aware of diagnosis. Although 90 % caregivers were aware of prognosis, only 64% patients were. Only 42% caregivers were ready to disclose the prognosis to their patients. Major concerns were treatment (42.3%) and symptom (39.7%) related. Readiness of caregiver to disclose prognosis was found more in higher socioeconomic strata (p=0.014).

Conclusion: In this study, we found that majority of caregivers preferred not to disclose the prognosis to patient and that they were mainly concerned about their symptoms and treatment. Early integration of PC in acute leukemias with comprehensive counselling of patients and their caregivers will improve communication & coping.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 14: REASONS FOR ADVANCED STAGES OF PRESENTATION OF CANCER PATIENTS IN UTTARAKHAND REGION: HOSPITAL BASED STUDY

K Kusum ¹, C Vasantha Kalyani1 ¹, Sweety Gupta ¹

Introduction and Objectives: Early diagnosis is a key to cancer control because of the growing evidence of an association between time from symptom onset to diagnosis. Results of treatment are better when patients present in initial stages of disease. >80% of patients present in advanced stages of malignancies at our institute. In this study, we identified factors for delayed presentation in Uttarakhand.

Material and Methods: 360 cancer patient's prospective data were collected in Radiation Oncology OPD of AIIMS, Rishikesh, Uttarakhand. Structured data collection tools were prepared from 7 experts from oncology: bio-demographic, clinical-profile and reasons for delayed visit to hospital.

Results: 29.4 % patients 51-60 years and >60 years age; Male:Female ratio 3:2. 28.9 % had history of smoking f/b 11.9% with history of smoking, alcohol and tobacco. 34.2% patients had symptoms since 3- 6 months, f/b less than 3 months (24.7%). 48.6 % patients directly came to institute after any warning symptom of cancer. 32.2 % were on alternative treatment, of which 15.6 % were since 3- 6 months, and 5.8 % for 6-12 months. Most common reason for alternative treatment was assurance of cure (20.3 %). Time-gap from symptom appearance to diagnosis was > 3 months (61.1 %). Most common reason of time-gap was symptom appraisal (71.7 %). Time-gap from symptom to diagnosis significantly correlated with education level of patients and caregivers (p=0.02).

Conclusion: Identifying important factors that can be modifiable through appropriate intervention programs related to delay would not only reduce delay in diagnosis but also minimize time in initiating treatment which can improve cure rates in cancer.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 15: WHO IS FAMILY?

LV Usha Rani ¹, V Vishwanath ¹

This narrative reflects how empathetic and non-judgmental psychosocial care is, and integral for PC provision.

Mrs G, a widow, diagnosed with locally advanced carcinoma colon and symptom-free refused second-line chemotherapy and sought hospice-care support in Dec 2016. She came with a male cousin and her adolescent children introducing them as family. After we made sure her decision was an informed one, we assured her of symptom control. In the next 30 months, Mrs G received symptom control for pain, crisis admissions, intestinal obstruction, urinary dysfunction, and finally end-of-life care.

This was expected, but as her symptoms progressed, her family disintegrated. The cousin whom she had presented with was actually her partner, and friend of her husband, who had succumbed to cancer. He cheated on her and disappeared with her property and home. Her children were torn between caring for their mother and disowning her, and they chose the latter. The daughter eloped and her son left the city.

Every time Mrs. G lost a bit of herself with her family, the hospice and home care team adopted her non-judgmentally. Many a time, Mrs G would discontinue medications, abandon follow-up and present in a crisis. The sequence of her life events was revealed to the team only towards the end when she was in a care home run by hospice volunteers.

There was collusion within the team members as to why she should receive preferential care when she had “family”. But one doctor in the team never let her down and through thick and thin, the PC team remained her family.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 17: ENGAGING TERMINALLY ILL PATIENTS WITH Bu IMAGE ISSUES IN ACTIVITIES TO EMPOWER PATIENTS WITH Au CANCER

K Parvathamma ¹

Introduction and Objective: Patients with terminal cancer suffer from body image issues. This has adverse effect on their mental and physical health. Objective is to engage patients in activities to help them empower with body image issues.

Methods: Observational study based on in-depth counselling interviews.

Results: It was observed that individuals face a lot of problems due to body image issues. These problems are divided in to 3 domains, physical, psychological, and social. Problems faced due to body image issues: 1) Physical issues: Sleep disturbance, Pain, Sexual problems; 2) Psychological: Embarrassment, Anger, Fear of death, Shy: being shunned, Depressed, Helplessness, Fear of being judged; 3) Social issues: Avoiding people, Isolation, Exclusion from work, Difficult finding accommodation. After the interventions it was observed that there was a significant change with the nature of issue which improved. Better relationship with family, better self-image, reduced sleep disturbance, pre-occupied with work, which resulted in less negative thoughts, less suicidal thoughts, relaxation, appreciation from people, happiness, reduced depression, and more contact with people around.

Conclusion: Specific examples will be presented to illustrate some of these body issues faced by the patients and how they were empowered by engaging in activities they enjoyed. Engaging them in activities helped them to get distracted from negative body image thought. These aided in improving their quality of life and attain peace of mind.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 18: ENHANCING QUALITY AND QUANTITY OF LIFE – 13 YEARS SURVIVAL WITH RECURRENT STROMAL SARCOMA

Dani Swarna Mathew ¹, Reena Mary George ¹, Thotampoori Shanthi Prasoona ¹

Introduction: Targeted and hormonal treatments have an increasing role in improving QOL and survival with acceptable toxicity and cost.

Objectives: To review the clinical course of a long-term survivor (13 years) who received hormonal therapy in palliative care clinic.

Methods: Retrospective chart review.

Results: A thirty-year-old mother of three school going children presented with a 19x15 cm solid pelvic mass that had recurred after three surgeries done in another center over the past two years (1. Hysterectomy and Right Salpingoopherectomy for an adherent lesion, 2. Inoperable disease - laparotomy, 3. Biopsy and cyst wall drainage) The biopsy had been reported as a low-grade endometrial stromal sarcoma from uterus/ovary. She was referred for palliative care. After reviewing literature which suggested favorable outcomes with adjuvant Letrozole, a senior surgeon was consulted. Laparotomy with palliative intent was performed and 30x30 cm solid mass was resected. The fields were deemed too large for postop RT. The patient was referred back to Palliative Care and we started on Letrozole 2.5 mg OD, which she has now continued for 13 years, with no adverse effects. Bisphosphonates and Calcium supplements have been given.

Conclusion: The patient has been asymptomatic and disease free for 13 years.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 19: IMPACT OF TRAINING OF ASHA WORKERS ON SHS IN PUNE DISTRICT, MAHARASHTRA

Prasad Rane ¹, Kranti Rayamane ¹, Rajesh Jainjangade ¹

Background: Frontline health care workers (ASHA) from two blocks of Pune district were trained in palliative care. An evaluation was done after the training. The knowledge in palliative care was tested before and after the training to see the impact.

Aim: To investigate the impact of training on Frontline Health Workers (ASHAs) knowledge in palliative care.

Methods: 243 Frontline Health Workers (ASHAs) attended training from Dec 2018 to Feb 2019. The training curriculum was design based on the existing module developed by TATA memorial hospital. The module was adapted and symptoms mentioned in Lancet commission report 2017 as symptoms of SHS were included. Experts in palliative care conducted the training. The training was conducted in a participatory manner. A structured tool was developed to test the impact of training. The training was focused on identifying the symptoms of SHS and referral. The scale was designed to assess the knowledge.

Results: The results of this training indicate that a 2 days training session made a signicant difference in improving ASHAs accuracy in completing the assessments with regard to palliative care and treatment need. Signicance difference in knowledge of palliative care were observed between pre and post training (χ²=4.44, p<0.05).

Conclusion: Training on symptoms is recommended for ASHA workers in order to early identify cases requiring palliative care.

Acknowledgement: We thank Dr Sanjay Oak, CEO, for permitting to use the data and for his cooperation. We thank Cipla Foundation for technical and nancial support.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 20: END-OF-LIFE COMMUNICATION AND DECISION MAKING BEFORE HOMECARE TRANSITION

Priyadarshini Chandra Deo ¹, Mahesh Menon ¹

Background: At Kokilaben Hospital, prior to discharge, end-of-life (EOL) communication and decision making with caregivers and advanced cancer patients, is to create a shared understanding about a person's values and treatment preferences that will lead to a care-plan that is consistent with these values and preferences. Improvements in effective communication and decision making at EOL have been identified as high priority from the patient and family point of view.

Objectives: ESAS and CBS were used to measure distress in patients and caregivers respectively. The purpose of this retrospective study of 30 EOL patients was to develop quality indicators before home care transition which are related to EOL communication and decision-making by carers.

Methods: The multidisciplinary psycho-oncology team of KDAH which includes the PC physician, psychiatrist, counsellor, PC nurse, dietician & homecare team, have developed a conceptual framework of EOL communication and decision making. This framework includes best management of physical and psychological symptoms of patients and caregivers to ensure quality of life.

Results: It was observed that in spite of the fact that death and dying are intensely a personal and social event, advance care planning and goals of care discussions were rated as extremely important after the patient was discharged home, and patient and caregivers were well prepared to handle physical and emotional strain much better.

Conclusion: All areas of detailed advance care planning improve the quality of EOL communication and decision making.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 21: ANALGESIC RESPONSE TO INTRAVENOUS MORPHINE INFUSIONS IN OPIOID NAïVE PATIENTS MANAGED FOR SEVERE MALIGNANT AND NONMALIGNANT PAINS

Geraldine Monteiro ¹, Renuka Pai ¹, Sangeeta Das ¹, Subhash D Tarey ¹

Introduction and Objectives: Morphine is the opioid of choice to treat moderate to severe pain. Oral route is preferred because of ease of administration but in pain crises, parenteral route is preferred since onset is faster, doses are easily titratable and analgesia, superior. This paper evaluates analgesia in opioid naïve patients with severe pain (NRS) after four hours of initiation of IVMI.

Methods: An observational prospective study comprising of 28 patients in severe pain with NRS >8/10 and severely impairing activities of daily living (ADL). Of 28 patients studied, 22 were in age group 30-50 years and 6 were in 50-70 years; 15 females and 13 males; 12 had pain due to malignancies and 16 had pain of non-malignant origin. Among 12 patients with malignancies, 6 had head and neck cancers; 2 lung cancers; 4 gastrointestinal tract cancers. Rest 16 patients had pain due to acute pancreatitis (4), degenerative back or neck pathology (4), amputation (4) and trauma (4). NRS was assessed four hours after infusion. Details of patients who received boluses before initiation were also noted. Objective assessment was based on the following scale: 1) 50% / > reduction from the initial NRS was “GOOD” response; 2) 30-50% reduction as “SATISFACTORY” response; 3) 30% / < reduction as “POOR” response.

Results: Results are tabulated in Table 1. The pain response is depicted in Figure 1.

Table 1.

Characteristics of intravenous morphine infusion and analgesic response

Groups	Number of patients	Mean baseline NRS	Range of dose (ml/h)	Median of dose	Mean NRS post-4 h
Responders	6	9.6	0.5-1	0.208	1.6
Satisfactory responders	10	9.7	25-2	0.125	5.4
Poor responders	12	9.78	0.5-2.5	0.125	8.25

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NRS: Numeric rating scale

Pain response post four hours of infusion

Conclusion: It was found that 20% had a good response, 33% had satisfactory response and about 47% responded poorly. Nearly 50% patients responded poorly but had received morphine at a higher dosage (0.5-2.5 mg/hour) and did not meet the quality parameter set which is ‘50% pain relief within four hours of initiation of IVMI'. The reasons behind poor response shall be discussed.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 22: LIFESTYLE AND SELF-MANAGEMENT AMONG GOOD AND POOR GLYCEMIC CONTROL PATIENT WITH DIABETES ATTENDING DIABETIC CLINIC OF BPKIHS

Ram Mehta ¹, Anita Upreti ¹, Pushpa Parajuli ¹, Rabin Maskey ¹

Background and Objectives: Diabetes is serious health concern which can be successfully managed by good self-management and lifestyle modification such as diet, exercise, smoking and alcoholism. The study aimed to compare lifestyle and self-management among good and poor glycemic-control patient with diabetes attending diabetic clinic of BPKIHS and to find out the association between lifestyle and self-management with the selected socio-demographic variables.

Materials and Methods: A descriptive-comparative study design was used to conduct study on lifestyle and self-management among good and poor glycemic-control patient with diabetes attending diabetic clinic of BPKIHS. Of 140 respondents, 70 in each good and poor glycemic-control group using non-probability convenient sampling technique. Data was collected through self-structured interview questionnaire and DMSQ and were analyzed using SPSS versions 11.5. Pearson's Chi-square test, Fisher's exact test and Mann-Whitney U, Independent T-test were used for analysis and interpretation of data.

Result: It was observed that lifestyle practices with respect to physical exercises was statistically higher and regular in good glycemic-control group (p= 0.001). Majority (94.3%) of respondents in good glycemic-control group had overall effective self-management than in poor glycemic-control group (70%). Among the diabetes self-management sub-scales, physical activity (p= 0.001) was found to affect significantly in glycemic control followed by glucose management (0.04) and dietary control (0.04).

Conclusion: This study provides preliminary evidence that lifestyle and self-management had significant relationship with glycemic control. Therefore, strategies to enhance better lifestyle and effective self-management for patients are essential components of diabetes education programs.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 23: BUILDING UP A WORKFORCE IN VOLUNTEERING

Ramaswamy Natampally ¹

Introduction and Objectives: Volunteers have been manning help-desks in nine major public hospitals of the city. Enrolling and sustaining volunteers in PC in Kidwai Memorial Institute of Oncology has been a major challenge since not many volunteers can face terminally ill patients, visible suffering and death. Constant efforts have been made in the past 20 years to ensure the commitment and quality of emotional support of volunteer-counselors.

Materials and Methods: An informal get-together with pot-luck lunch every Wednesday, both for patients and care-givers. Monthly orientation lectures by experts. Opportunities for volunteers to vent out their own sadness and grief when they constantly face death and dying. Recognition and felicitation for those who complete multiples of 5 years of volunteering. Maintaining a team spirit, checking in on volunteers who are unwell and unable to come to hospital.

Results: We have been able to sustain regular non-medical emotional support for over twenty years, Monday to Saturday, primarily through the commitment of the dedicated volunteers, most of who are senior citizens, and who support each other almost as a family.

Conclusion: While medical staff in the hospital provide excellent treatment, our volunteering work has been able to fill in the crucial area of providing a listening ear to both patients and care-givers, providing them with unconditional emotional support, and being there at their worst times. Without exception all volunteers agree that this selfless and free service has helped them to improve their quality of life and deal with their own challenges much better.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 24: TINY HOMES, TERRIBLE SYMPTOMS: THE SOCIAL SITUATION OF PATIENTS WITH RECTO–VAGINAL FISTULA DUE TO CERVICAL CANCER

Ramu Kandasamy ¹, Shanthi Prasoona ¹, Shakila Murali ¹, Roja Rekha ¹, Poornima Kothandan ¹, Reena George ¹

Introduction and Objectives: Advanced cervical cancer can infiltrate the rectum. Rectovaginal fistulae (RVF) present with faecal incontinence, smell, discharge and soiling causing suffering to patients, families and health care providers. We aimed to assess the social situation and concerns of patients with RVF due to cervical cancer.

Methods: Our ten-year retrospective cohort comprised of 209 patients with post-treatment pelvic recurrence of carcinoma cervix. 23/209 patients had rectovaginal fistulae. Data was extracted from social-work, nursing and medical notes compiled from PC clinic and home visits. 80% of patients had been visited at home.

Results: Majority of patients came from very deprived circumstances. 69.6% owned no land, 45.5% were illiterate and 50% worked as unskilled labourers. 68.2% spouses were illiterate and worked as unskilled labourers. The median distance from hospital was 40 kilometers; 91.3% used public buses for transport. 75% of households did not have toilet; 39.1% had one small room and kitchen. There were four people on an average in one room [(IQR: 2.5 to 7)]. 50% patients had smell and leakage, which were main concerns on physical and social fronts. Follow-up times were: Last patient visit to death: 36 days, last proxy visit to death: 19 days, last PC team visit to death: 12 days.

Conclusions: Rectovaginal fistula, one of the most difficult gastro-intestinal symptoms, affects extremely vulnerable patients and families causing high psychosocial and symptom burden. This is the largest series reported to date indicating that many of these patients suffer undetected in the community.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 25: A CROSS SECTIONAL SURVEY ON THE PREVALENCE OF FOOD MYTHS AMONG CANCER PATIENTS UNDERGOING TREATMENT IN THE PURVIEW OF AN ONCO-SPECIALITY HOSPITAL

R Ramya ¹

Background and Objectives: Myths have a strong influence in seeking treatment during illness. Understanding myths and misconceptions about the disease is important. The present study aims to assess prevalence of food myths in cancer patients undergoing treatment. An attempt to analyse perception of cancer patients on food and nourishment, respective of their age, gender and site of cancer.

Materials and Methods: Cross-sectional survey was administered in patients undergoing chemotherapy/radiotherapy in Cytecare Cancer Hospitals, Bangalore in day-care basis as per exclusion criteria. A self-administered pre-tested questionnaire in English/Vernacular language on most common myths on food during cancer treatment was included. Questionnaire consisted of two parts - demographic - personal history and 14 close-ended myth survey questions. Time-period was from July to August 2019.

Results: 124 patients responded. Result was analysed using suitable statistical analysis - Chi Square and relative frequency method. 77% patients had negative association on the myth that “sugar feeds cancer cells” resulting in decreased food intake and appetite. 68% patients stopped consuming meat. Percentage of patients who believed myths on microwaved food and consumption of raw fruits was comparatively lesser.

Conclusion: As lot of good and misinformation float around in the internet, patients often get confused on what type of diet to be followed during cancer treatment. From the survey, we came to know about the severity of food myths which can affect their quality of life and nutritional status.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 26: PALLIATIVE CARE TRAINING FOR MID-LEVEL HEALTH POST WORKERS IN RURAL NEPAL

Sunita Bhandari ¹, BK Manju ¹, Ruth Powys ¹, Daniel Munday ¹

Introduction and Objectives: In Nepal many people live in remote rural areas with limited access to healthcare provided by health post workers (HPW). Whilst incidence of chronic illness and need for palliative care (PC) is increasing, few HPW have received PC training. We trained 23 rural HPW in PC using SPICT-LIS to enable identification of people with PC needs and utilizing PC Toolkit (PCT), a simple text for development and provision of PC. Training was evaluated after one year.

Methods: Online questionnaire exploring HPW views about training and subsequent experience delivering PC was completed by ‘smartphone'. 11 participants in 6 health posts were visited to explore their experience of delivering PC in greater depth.

Results: 22/23 participants completed online questionnaire. 21/22 found the course very or quite useful for their work. 17/22 had used SPICT-LIS, 4 finding it very useful and 13 quite useful and 18/22 had used PCT, 3 finding it very useful and 15 quite useful. 13/22 saw someone with PC needs at least once a week with only 2/22 seeing someone less than once a month. Participants had seen people with PC needs with following conditions: 22/22 COPD, 13/22 multidrug-resistant TB and 11/22 cancer. 17/22 participants reported they were ‘quite confident’ in delivering PC. The greatest challenge for delivering PC was limited access to health posts.

Conclusion: This short course enabled HPW to develop PC skills. Follow up is focusing on: Nepali translation of PCT, improving access to PC and joint training of HPW and district hospital workers to improve PC teamwork.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 27: TO EXPLORE THE COMMON PSYCHOLOGICAL MANIFESTATIONS PRE AND POST CHEMOTHERAPY OF ADVANCED CANCER PATIENTS IN A TERTIARY CANCER CENTER

Sangeeta Das ¹

Introduction: Cancer not only affects physical health, but also mental health of patients. To an extent this is further influenced by treatment like chemotherapy. Physical changes include significant hair loss, vomiting, insomnia, fatigue, etc. Additionally, mental changes include fluctuations in levels of anxiety, irritability, depression, etc. These need to be considered by practitioners while treating cancer patients.

Aim: To investigate the impact of chemotherapy on common psychological manifestations of advanced cancer patients - levels of anxiety, irritability, depression, fatigue, insomnia, memory loss and concentration problems.

Methodology: 100 patients, ≥18 years diagnosed of advanced solid tumors were selected for the study. This was compared with the other arm consisting of 50 chemotherapy treated patients of either sex (equal ratio). A minimum of 3-cycles of chemotherapy was mandatory for assessment. A self-reported questionnaire was used to record responses of subjects.

Results: Results show impact of chemotherapy on mental health of patients with incurable cancer. The analysis was done based on gender – males/females with equal ratio. In males, all parameters were more post-chemo, except for pre-chemo anxiety (which was more than post-chemo), and depression which remained same. Whereas, in females, everything was more in post-chemo, except for concentration problems, which remained same.

Conclusion: The hypothesis was partially supported by the data produced in this study. In case of males, anxiety was the only parameter that reduced after chemotherapy and depression remained equal throughout. Whereas, in case of females, concentration was the only parameter that remained equal throughout the study.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 28: “I THINK THIS IS HOW MUCH YOU SHOULD KNOW”: BELIEFS ABOUT AND EXPERIENCES OF PROGNOSIS DISCLOSURE VERSUS NONDISCLOSURE AMONG INDIAN ADVANCED CANCER PATIENTS AND THEIR FAMILY CARERS

Sravannthi Maya ¹, Mahati Chittem ¹, Smita C Banerjee ¹, Patricia Parkar ¹

Objectives/Purpose: Prognosis nondisclosure to cancer patients is commonly practiced in many Asian countries. Family caregivers'cite fear of patients losing hope as the main reason for non-disclosing. Yet, patients want to know their prognosis and report favorable psychological outcomes when aware of their prognosis. However, no study has explored the beliefs about and experiences of prognosis disclosure among Indian patients with advanced cancer and their primary family carers.

Methods: Patient-carer dyads formed four groups: aware patient-carers (25), unaware patients-carers (25), patients aware of their prognosis despite carer not disclosing it (5) and patient-carer both aware of prognosis but preferred not to discuss it (5). Individual semi-structured interviews explored beliefs about and reasons for (non)disclosure, experiences of having cancer/caring for the patient, and how cancer was discussed among patient-carers. Interviews were analyzed using Interpretative Phenomenological Analysis.

Results: There were several similarities and dissimilarities across the groups. Similarities included patient-carers’ reasons for prognosis (non)disclosure, levels of concern/worry for each other, communication constraints/difculties between patient-carer-physician, and lack of supportive care resources. Dissimilarities included differing information-seeking behaviors, disparate beliefs about treatment effectiveness, confusion about role allocation/expectations from each another and the physician, and developing contrary and independent coping skills to deal with cancer.

Conclusion and Clinical Implication: Indian patients with advanced cancer and their family carers have some shared and differing perceptions of the illness based on patients’ disclosure status. A major clinical implication is to develop empathic communication interventions which addresses the dyads’ concerns, expectations, and communication difficulties.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 29: ASSESSMENT OF DEMENTIA CAREGIVER QUALITY OF LIFE IN INDIA: AN EXPLORATORY INVESTIGATION USING A SERVICE DESIGN ORIENTED INSTRUMENT

Pradeep Kulkarni ¹, Prajakta Wadhavkar ¹, Pramod Khambete ¹

Introduction and Objectives: Caring for Persons Living with Dementia (PLWD) in domiciliary setting affects Quality of Life (QoL) of caregivers. Improving QoL is a holistic approach rather than addressing aspects such as caregiver stress, and caregiver burden individually. Study of caregiver QoL have received inadequate attention in India. This study is aimed at assessing QoL of caregivers to obtain actionable insights to design services to enhance QoL of caregivers. The perspective was from Service Design (SD), a multidisciplinary field that adopts a holistic, human-experience centric stance that blends Design Thinking and Service Management.

Materials and Methods: A measurement instrument was developed to suit the Indian context combining established, validated measurement instruments with few modifications such as adding dimension “Meaning and Spirituality”. Original instruments were not changed to preserve validity. The model of relationships and respective instruments used are depicted in the Figure 1.

Base scales/models for the proposed scale

A survey on a modest scale (N=38) was conducted. Sample was drawn from caregivers of residents of a Dementia Care home, who were asked to reflect on their experience of caregiving when PLWD was at home.

Results: Our results are as follows: While it is difficult to specify the ideal QoL, the level of 57% seems low [Figure 2]. It is surprising that despite the level of Facilitating factors being 76% [Figure 3]. In particular, the low level (44%) in Carer Role is surprising despite the relatively high level of Carer Support. High levels of Attitude and Beliefs and the sense of Meaning and Spirituality are positive surprises. The Service Design interventions should leverage these factors.

Conclusion: Despite limitations in terms of sample size and reliance on retrospective accounts, statistical analysis does not suggest significant impairment to results. We have identified tentative areas for action and better Service Design. As well, the study has provided a pointer to further investigation, which are planned.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 30: CLINICAL TELEPRESENCE ENABLES PALLIATIVE MEDICAL CARE TO BECOME COLLABORATIVE AND EASILY ACCESSIBLE AT HOME

Sridhar Pillalamarri ¹, Sundararajan Srinivasan ¹, Mahesh Krishna ¹, Amelia Michael ¹, Raghavendra Ramanjulu ¹

Introduction: Palliative Medicine (PM) is increasingly accepted in India and around the world. It is applied from onset of acute care and not confined to End-of-life. It is also being demanded by patients as awareness spreads. There are millions of patients with chronic morbidities from Cancer and other non-communicable diseases looking for care at the comfort of their homes. The number of specialists qualified in PM is quite small against the demand, even as there are concerted attempts to grow the rank. We have created and deployed Clinical Telepresence, a technology-based care delivery solution, that enables extension of Palliative expertise from the hospital to home, supported by a collaborative network of doctors and nurses.

Methods: Clinical Telepresence combines tele-health technology with interactive telepresence, clinical workflows and a collaborative network of doctors and nurses. It is an active infrastructure with which we have extended the care of our partner specialists and hospitals to patients at home. We share the solution in detail.

Results: We present four selected cases of patients who were provided palliative care through Clinical Telepresence. We demonstrate how this has been used to deal with condition of patients during progression of disease. We share with you experience of patient and specialist.

Conclusions: Clinical Telepresence for providing palliative Care is a novel and cost -effective approach to provide effective care at home. The model helps in symptoms relief and enable continuity of care, preventing needless re-admissions, thereby improving overall patient comfort and QoL.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 31: TO STUDY THE EFFECTS OF DIFFERENT MODES OF ANALGESIA ON POSTOPERATIVE PAIN (ACUTE AND CHRONIC) AFTER MODIFIED RADICAL MASTECTOMY

Snehlata Kumari ¹, Trina Sen ¹

Introduction: Breast surgery is a common procedure with increased incidence of acute and chronic pain. Acute post-surgical pain is common after breast cancer surgery, the prevalence of persistent post-surgical pain being highest with thoracic and breast surgery. Some patients (20 to 68 %) experience post mastectomy pain syndrome (PMPS), classic symptoms being pain and tingling in chest wall, armpit and/or arm, shoulder or surgical scar. There might be numbness shooting/pricking pain/unbearable itching.

Objective: To review previous literature and present current view of relationship between analgesic option and effect on acute and chronic postoperative pain in patients undergoing MRM.

Methods: The review will include prospective retrospective randomized, non-randomized, blinded, non-blinded or cohort studies, case series and case reports. The search is using pubmed, cochrane library and Google scholar for all related manuscripts till December 2019.

Results: Literature shows that different modes of analgesics decrease acute post-surgical pain which has an impact on chronic and persistent pain.

Conclusion: Evidence shows that there are multiple promising analgesic techniques for acute and chronic pain management associated with modified radical mastectomy that will be reviewed.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 32: DISTRESS AMONG PATIENTS ADMITTED WITH ONCOLOGICAL CONDITIONS IN A Pu HOSPITAL OF COASTAL KARNATAKA: A CROSS-SECTIONAL STUDY

Sujatha Kannappan ¹

Background: Distress is an unpleasant feeling which affects mental, physical, social, or spiritual well-being. It reduces coping skills of patients undergoing chemo or radiotherapy. It also affects functional ability of an individual and leads to poor QoL. If a patient is treated for distress at early stage, severity of emotional problems is prevented which improve physical health.

Objective: To determine distress of patients with oncological conditions as measured by NCCN Distress Thermometer.

Methods: A cross-sectional study conducted among patients with oncological conditions admitted in a hospital in Mangalore. Purposive sampling was used to select the participants.

Results: 100 patients participated in this study: 77 males (77%). 32% were between 36 to 40 years. Regarding the period of hospitalization, 65% (65/100) admitted for one week. Around 75% (75/100) suffering from the illness for <1 year. 34 participants had been operated, and 78% are not an earning member in the family. 33% with Ca breast and 14% Ca ovary. In present hospitalization, 14% once received radiotherapy, and 58% received one cycle chemotherapy. 57% had Practical problems, 42% had family problems, 53% had emotional problems, 23% of physical problems, and 10% of spiritual/religious concerns. The most affected practical problem was finance (81%) and transportation (82%). Majority of the patients had sadness (66%).

Conclusion: This study shows that more than half (65%) of the patients had a score of 5 in distress thermometer, which shows that there is a requirement of further evaluation on their psychosocial wellbeing.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 33: MULTIDISCIPLINARY APPROACH TO EMPOWER ADVANCED CANCER PATIENTS IN PALLIATIVE CARE

KS Sundari ¹

Introduction and Objectives: Palliative care involves team approach. In this paper efforts have been made to explore the impact of physiotherapy and psychological counselling to improve quality of life in patients with advanced cancer. The objective is to highlight the physiological and psychological concerns of the patients and various interventions done to reduce their concerns.

Method: Information is taken from a review of recent case-note records of in-depth counseling sessions and physiotherapy sessions to illustrate different areas which lead to empowerment and reduce their concerns.

Results: It was observed that few concerns had a major impact on them: Physiological concerns included paralysis, paresis, bedridden state (due to foot drop, swelling in legs, body tightness, amputation) lymphedema, pain, etc. Psychological concerns included: being dependent on someone else, feeling of insecurity, feeling of worthlessness, body image issues, family issues, etc. In all the above concerns it was seen that there was a significant change after intervention.

Conclusion: It was observed that addressing these concerns through various interventions helped the individuals improve their quality of life and enhanced dignity. The continuing commitment of the team to provide care solely on the basis of clinical need proved highly beneficial.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 34: PREVALENCE OF AND FACTORS ASSOCIATED WITH ANXIETY DISORDERS IN INDIAN PATIENTS WITH ADVANCED CANCER REFERRED FOR PALLIATIVE CARE: A SINGLE CENTRE OBSERVATIONAL STUDY

Nilesh Valvi ¹, Jayita Deodhar ¹, Arun Ghoshal ¹, Anuja Damani ¹, MaryAnn Muckaden ¹, KV Ganpathy ¹

Introduction: Anxiety in advanced cancer is linked to diminished QoL, yet it is poorly understood with regard to prevalence and relationship to other aspects of psychological distress.

Objective: To assess prevalence of, and factors associated with anxiety disorders in Indian patients with advanced cancer referred for palliative care.

Methods: 100 patients with advanced cancer referred to Specialist PC in a tertiary care cancer institute in a 6-month period were enrolled in this observational study. Anxiety disorders were assessed using Generalized Anxiety Disorder 7 (GAD-7) scale.

Results: Of 62 men, 40 had completed secondary education. 60% had good ECOG status. Median age 51 years (range, 18 to 84). Primary sites of tumour: lung (25%), genitourinary tract (13%), and breast (13.0%); twelve (12.0%) diabetic. 34 patients (34.0%) knew they had advanced cancer being treated only with PC, and rest (66.0%) were being offered some cancer-directed therapy concomitantly with palliative intent. Median time since diagnosis of cancer was 32 days, and since recurrence/progression was 7 days. 12 patients had mild anxiety with clinical significance. Of 12 patients, 7 were males, 5 females. 4 patients had lung, 5 had breast and 3 had genitourinary cancers. Their median age was 55 years. The GAD-7 scores were significantly correlated to younger age (p=0.04 increasing pain severity (p<0.01), increasing fatigue (p=0.04), increasing anxiety (p<0.01), worsening sense of wellbeing (p=0.03), and ESAS score (p<0.01). Multivariate analysis adjusted to comorbidities and analgesic intake did not reveal more information about these correlations.

Conclusions: Approximately 12% of the patients with advanced cancer in our study had mild anxiety disorder. The prevalence of anxiety was higher in patients with young age, performance status and higher symptom burden.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 35: IS PALLIATIVE CARE PERCEIVED AS A NEED OF HOUR BY THE FUTURE MEDICAL MANPOWER OF INDIA?

Vaidehi Malvi ¹

Introduction: Present healthcare in India is dependent on secondary prevention with less attention to palliative care. Worldwide there has been variable awareness about the same amongst healthcare providers. However, there is limited relevant literature from India. Hence a study was conducted amongst post-graduate medical students in Mumbai to assess perceptions about palliative care.

Objective: To assess existing knowledge, attitude and practices regarding palliative care among post-graduate students in a medical college in Mumbai.

Methods: In a randomly selected medical college, a cross-sectional study was conducted among 100 post-graduate students selected by convenience sampling. Data was collected with the help of pretested questionnaire. Strict confidentiality was maintained during data collection and analysis. Ethical approval was obtained.

Results: Participants were aware about the term palliative care. 40% participants said it provides relief from pain, distressing symptoms, and support to help patients live actively till death, spiritual and psychosocial care. But 0% said it provides reduction in financial hardship. Only 19% participants were aware that PC starts when the patient is diagnosed with chronic illness. Though 80% participants said that they would advise PC to chronically ill patients but 70% of them did not know which hospitals provide PC. Neither of the participants received training nor experience of working in PC. Majority (98%) of participants were interested in getting training for PC.

Conclusions: Though post-graduate students knew concept of PC, they did not have detailed knowledge including its practical application. This indicates scope for its improvement.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 36: EMPOWERING FAMILIES THROUGH NETWORKING IN PALLIATIVE CARE

Vasudha Kothapalli ¹, KS Sundai ¹

Introduction: A cancer diagnosis can be terrifying and break the day by day functioning of individuals and their families. Many a time they are drained in all ways possible, psychological, physical, spiritual or social. A correct association could help them become stronger and more content, especially in controlling one's life and claiming one's rights.

Objective: To highlight how networking can help family members of palliative care patients lead a more controlled life.

Methods: Examples are taken from a review of recent case-note records of in-depth counseling sessions to illustrate different areas leading to empowerment in life after or during loss of a loved one through connections.

Results: It was observed that connecting families to various other organizations to help them regain their confidence had a positive outcome. Providing help in various aspects of their life include: 1) Educational support (connecting them to other organizations which provide educational support) 2) Spiritual support (connecting them to individuals who practice spirituality (priest) 3) Community support (connecting them to organizations which provide social support) 4) Financial support (connecting to donors and volunteers) 5) Psychological support( counseling sessions with in-house counselors) 6) Employment (connecting them to other organizations which provide employment and vocational training).

Conclusion: To forget the loss of a loved one and move ahead in life would need a very strong and positive aspect of change, especially to know that there are individuals around who would support you makes a lot of difference in one's life.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 37: “GOLDEN BUTTERFLIES BANDWAGON” – AN EXPERIMENT IN ART AND PLAY THERAPY

Stella Mathew ¹, Lavanya Krishnakumar ¹, Nandhini Sundar ¹, S Aruna ¹

Introduction and Objectives: Worldwide, 2.5 million children die annually requiring palliation, of whom more than 98% are from developing countries. Further, 7 to 9 million children, from neonates to 18-21 years, could benefit from palliative care. Children suffering from various life-threatening/life-limiting conditions require palliative care: cancer, irreversible organ failures of heart, liver and/or kidney, HIV/AIDS, neuromuscular or neurodegenerative disorders, and multiple disabilities following brain or spinal cord injury. Golden Butterflies (GB) provide counselling of child-patients and their family/caregivers at their homes and treating hospitals; finances for nutrition, medications and tests; conduct awareness programs; and training workshops in counselling in Chennai city.

Materials and Methods: Once a month, volunteers conduct 2-hour therapy sessions at Kanchi Kamakoti Childs Trust Hospital or Sri Ramachandra Medical College, in a fun-filled endeavor to alleviate child-patients’ boredom and stimulate their creative talents. Child-patients are free to enter or exit the activity room at will. Each attending child-patient is given a pack comprising an educational toy and nutritious foods. This study was conducted to evaluate the effect of consistently attending GB Bandwagon sessions on child-patients and their caregivers. Interviews using a semi-structured questionnaire were conducted with 7 child-patients and their caregivers, with each of the child-patients having attended a minimum of 4 sessions.

Results: GB Bandwagon sessions were found to have a positive influence on child-patients and their caregivers and improved their morale.

Conclusion: Art and Play Therapy is a creative way to engage child-patients and de-stress their caregivers, and can be expanded to other pediatric wards.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 38: ONE-YEAR IN-PATIENT EXPERIENCE OF PALLIATIVE CARE IN THE CITY OF MYSURU

P Vibha ¹

Introduction and Objectives: There is a need for Palliative care to include services and innovation. Both community and clinic-based services are an integral part. Against the background of over a decade of community-based palliative care in the city of Mysuru, the need for clinical in-patient support was recognized. The current paper examines the first-year experiences of providing services in an in-patient facility.

Methods: 193 people received care for varying periods of time, 40% on more than one occasion. The records of clinical care by doctors, nurses, counsellors were analyzed to understand the needs for in-patient care, type of care provided, outcome of care, problems met during care process, lessons learnt for future organization of services.

Results: Among 193 patients, there was an equal distribution of males and females. 93% were from the BPL group. 70% were from the city and surroundings. Cancers of abdominal organs, reproductive organs and oral cancer were frequent ones. 72% were in Stage-4. 60% were aware of EOL situation. Pain management was the main reason in 85% of admissions. In 81% family was the main support. In 74% spiritual sources were main coping method. Interventions included pain management, management of infections, wound management, counselling the patient and family. 20% passed away in the centre.

Conclusion: In the Indian situation, clinical care facility, along with community care is an essential component of palliative care. There is a greater need to start palliative care early in the illness trajectory.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 39: COMPARISON OF DIFFERENT RADIOTHERAPY REGIMENS FOR PALLIATION OF PAIN IN SPINE METASTASIS - A PROSPECTIVE STUDY

Sankalp Naidu ¹, Pawan Kumar ¹, Puneet Kumar ², M Navya ³

Introduction and Objectives: Bone metastases are common in patients with advanced cancers, particularly solid malignancies such as breast cancer, prostate cancer, and lung cancer. Although repeat radiation treatment has been shown to palliate pain in patients with bone metastases from multiple primary sites, data for best possible dose fractionation schedules are lacking. For patients of bony metastases, survival time becomes much longer as anti-tumor strategies developed. External beam radiotherapy is effective for pain-relief. Appropriate fractionation scheme for the most effective regimen of palliative radiotherapy to treat bone metastases is still in debate.

Materials and Methods: 30 patients of painful spine metastasis were selected and randomly placed in 3 arms. Arm-1 was given palliative dose of 30 Gy in 10 #, Arm-2 dose of 20 Gy in 5# & Arm-3 dose of 8 Gy in 1 #. Pain assessment scales & QOL were assessed before, after and 2 weeks after radiation. Statistical data was analyzed using SPSS version 21.

Results: The median PFS in these patients was 7.4, 3.5, and 4.6, respectively. Multivariable analysis showed that factors significantly associated with improved OS were higher equivalent dose (hazard ratio [HR] = 0.56; p = 0.047) and favorable symptomatic response to radiation therapy (HR for progressive symptoms 1.63; p = 0.02). Other factors including age, gender, stage, histology, primary site, ECOG performance status, and Charlson co-morbidity index were not statistically significant.

Conclusion: In the treatment of spine metastasis, short, cyclic, hypofractionated courses are promising regimens for patients with poor performance status and worse prognosis, and protracted courses that escalate with smaller fraction sizes are advantageous for patients with a better performance status and greater expected longevity.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 40: A STUDY TO ASSES NEEDS AND KNOWLEDGE OF PALLIATIVE CARE SERVICES IN AYUSH DOCTORS (BAMS, BHMS, BUMS, ETC)

Santosh Chaudhury ¹

Introduction: In Indian health system, 70-80% AYUSH doctors provide healthcare service at primary level. There is non-availability of training or certified courses on Palliative Care (PC) for them. AYUSH coctors lack proper knowledge and confidence to provide appropriate PC to patients. This study aims to assess needs and knowledge of AYUSH doctors on PC in Pune, Maharashtra.

Methods: After obtaining written consent, 100 AYUSH doctors were given a questionnaire with 17 questions that was divided into 3 parts –Demographic details, Knowledge and needs assessment.

Results: Most participants (98%) worked at primary level covering slum, urban, semi urban, and remote areas, and run their own clinics. They handle cancer and other PC patients for symptom management at primary level. 98% have heard about PC services. 50% said PC is only pain management, 38% symptom management, and 2% said it is pain & symptom management, psychosocial support and improve QOL. 80% reported that PC is only for cancer, whereas 20% said it is for all life-limiting diseases. 70% thought PC is end-of-life care only, and 30% said it is at any stage. 80% knew about NSAIDS in pain management but not opioids. Majority reported that PC is given only at hospital/hospice/old age homes, but unaware of homecare services. 93% said PC training is essential but not aware about courses or training. 96% doctors are willing to deliver PC services in communities.

Conclusion: The preliminary findings of this study indicates that there is a need of certified PC training for AYUSH doctors and it is essential to improve their knowledge about PC to provide services at tertiary level that is beneficial for patients and society.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 41: NEED ASSESSMENT OF PALLIATIVE CARE SERVICES IN A RURAL COMMUNITY OF COASTAL KARNATAKA, INDIA

Deepak Sudhakaran ¹

Introduction: With the rising burden of NCDs and increase in longevity due to better medical care, there is an increase in the proportion of individuals requiring Palliative Care (PC). However, only about 2% of Indian population has access to PC. Udupi, a district in Karnataka, considered to have good health indicators otherwise has only two PC centers for a population of nearly 12 lakhs.

Objectives: To estimate the proportion of population requiring PC services, and study the association between socio demographic, disease specific characteristics and PC needs of the community.

Materials and Methods: This cross-sectional study was done in 2 rural communities in Udupi district. SPICT-LIS was used to assess requirement of PC in the community. Data analysis was done in SPSS 15 and results summarized as percentages. Univariate logistic regression was used for exploring association between the sociodemographic factors and PC need.

Results: The study included 522 households with a total of 2041 participants out of which 51.5% were females. Majority belonged to the age group of 20-45 years. 22.5% had a chronic illness; hypertension, diabetes, and heart disease being the commonest. Out of the surveyed population, 4.3% (n=88) needed PC. Statistically significant association was seen between requirement of PC and age, occupation and chronic illness.

Conclusions: Nearly a quarter of the study population has chronic illness. The requirement for PC was highest among elderly, those with chronic illnesses and the unemployed and/or pensioners. Diseases of cardiovascular system followed by dementia and frailty are most common conditions requiring PC.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 42: ANALYSIS OF REFERRAL PATTERN TO CANCER HOSPICE AND HOW EARLY PATIENT RECEIVE Hu CARE

Kumaravelan Yuvaraj ¹

Introduction: When a patient's cancer progresses to advanced stage, its vital for the patient to get hospice services for symptom management and improving quality of life. Hospice focuses on providing palliative care to a patient when curative treatment is no longer possible, typically during their last six months of life. This study aims to evaluate various sources of referring patients to hospice and whether they are referred on time to receive appropriate palliative care.

Objectives: To understand the referral pattern to hospice services, and if there is delay in receiving hospice care what are the methods to be adopted for early referrals.

Methods: A retrospective data collection from the admission register of the hospice for a period of 1 year from October 2018 to September 2019 was done and analyzed.

Results: Rough analysis of the data showed: 1) Less referrals from Hospitals/doctors or medical fraternity, 2) Delayed hospice care, 3) Types of cancers who receive long/short hospice care.

Conclusion: As patients have right to receive hospice care, there is still lack of knowledge/understanding of hospice and palliative care among medical fraternity and general public. We should create awareness regarding hospice care and shed misconceptions if present.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 43: PATTERN OF PATIENTS PRESENTING WITH MALIGNANT SPINAL CORD COMPRESSION IN PALLIATIVE CARE UNIT AT A TERTIARY CARE CENTRE: AN OBSERVATIONAL STUDY

V Krishnapriya ¹, Sushma Bhatnagar ¹, Seema Mishra ¹, Rakesh Garg ¹, Vinod Kumar ¹, Nishkarsh Gupta ¹, Sachidanand Jee Bharti ¹

Background: Patients with metastatic spinal cord compression show variability in presentation to palliative care unit. This study aims to assess the various symptoms and how quality of life improves with early diagnosis and initiation of treatment in malignant spinal cord compression.

Objective: (1) To study the presenting symptoms and outcome of patients with malignant disease with spinal metastasis and their response to early treatment. (2) To correlate between time of presentation and improvement in quality of life.

Methods: An observational study of cancer patients admitted in Department of Palliative Medicine, IRCH, AIIMS, Delhi between August 2019 and December 2019 with malignant spinal cord compression. A total of 14 patients, >18 years of age, were assessed using Socio-demographic proforma, Semi-structured proforma for symptoms and disease, ECOG performance score, Numerical Rating Scale (NRS) for pain intensity.

Results: A total of 14 patients were analyzed, 8 patients were in age group of 40-60 years (57.1%). Majority of patients belong to ECOG PS 3. Mostly patients belong to NRS 7-8 (most common was lower backache radiating to bilateral lower limbs). Bowel and bladder were involved in 7(50%) patients. Lower limb weakness in 9(64.2%) within 24 hours of starting radiotherapy and high dose dexamethasone. 9(64.2%) patients improved in pain and 4(28.4%) patients showed regain of bowel and bladder continence. 3(21.6%) patients regained lower limb power.

Conclusion: Early diagnosis and treatment plays vital role in improving quality of life in malignant spinal cord compression patients.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 44: PUBLIC-NGO PARTNERSHIP IN INTEGRATING PALLIATIVE CARE ALONG WITH THE EFFORTS IN PREVENTIVE ONCOLOGY ACROSS THE HEALTH AND WELLNESS CENTRES WITHIN A DISTRICT OF ASSAM

Kumar Gaurav ¹

Introduction: Health and Wellness Center (HWC) is one arm of Ayushman Bharat meant to deliver comprehensive range of services spanning preventive, promotive, curative, rehabilitative and palliative care.

Objectives: A large proportion of activities for prevention as well as palliation, lie outside the tertiary cancer-care institutions. This paper describes efforts in reducing the cancer-related burden in the community, through capacity building of Health and Wellness Centre (HWC) functionaries in the domains of Prevention, Early detection of common cancers along with provision of Palliative care– the PEP domains. It elaborates on the development of structure and processes for initiating PEP activities at HWCs, within a district of Assam, for evaluation of the most common cancers- oral, breast and cervix.

Materials and Methods: Field observation, focus group discussions, explorative interviews, inputs from experts and study of field application models which were used to formulate the phases and pathway of integration in PEP realms.

Results: The outcomes of the PEP project, including development of modules, number of functionaries trained along with number of HWCs with capacity to provide PEP services as in Feb 2020 will be presented.

Conclusion: The paper will describe the vision, consensus building process, points of integration with the government functionaries, criteria used to select the pilot district in the state, governance and sanctions, identification of levels of training and development of modules, processes for capacity building and the sustenance plans. Possibilities of adapting the PEP concept to other districts in the state and other states in the country, and the criteria for the same will be elaborated.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 45: PATIENT AUTONOMY: IMPORTANCE OF VOICE OF CHILD IN DECISION MAKING

Prajakta Dhavale ¹

Introduction and Objectives: Individuals have a right to make decisions, legalized on basis of age. However, pediatric patients are dependent on their parents for decision making related to treatment, care, wishes, and future. The purpose of this study is to explore role of the child in decision making, help improve QoL, provide comfort care, and help in closure. The objectives are: to narrate experience of decision making in a pediatric PC patient; role of pediatric PC team in supporting autonomy of the child; and, to explore impact of child involvement in decision making on family dynamics.

Case Description: A 14-year-old boy with Hodgkin's Lymphoma diagnosed 1 year prior to referral to our center had received chemotherapy but relapsed. He underwent treatment again, but due to progressive disease treatment failed. He hailed from a poor socioeconomic background and lived with parents and 3 elder step-sisters, with cordial relations within family members. He was an intelligent and responsible child, actively involved in treatment related decisions. He understood the scope of treatment after relapse in terms of prognosis. While his mother was actively involved in his care, he served as a mediator between the father and his sisters and took all major decisions. He was a strong support for his mother in terms of understanding the disease, prognosis, and end-of-life care. Extensive counseling sessions with the mother and family clarified the value of child voice and supportive care.

Conclusion: This case study highlights importance of ‘my right my care’ philosophy, extending voice of a child in decision-making. The sessions also helped support the family, and for guilt-free coping with child autonomy.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 46: EFFECT OF PHYSICAL THERAPY INTERVENTION TO IMPROVE PHYSICAL ACTIVITY AND TO REDUCE PAIN IN PALLIATIVE CARE PATIENT: CASE STUDY

Srushti Hiremath ¹

Introduction and Objectives: Palliative care and rehabilitation share common goals and therapeutic approach. Both disciplines have a multidisciplinary model of care, which aims to improve patient's levels of function and comfort. Through this case study we seek to show how patient centered goals of care and physiotherapy can help the patient reduce pain and improve physical activity.

Methods: Assessments included muscle strength using Manual Muscle testing and Pain. Pain Score at first contact was assessed and recorded at 7/10 while the Manual Muscle testing score was 3/5. Rehabilitation plan was devised for 30 min/session for a duration of 20 days. Sessions were reduced to thrice a week on alternate days. The sessions included 15 minutes of Stretching followed by 15 mins of Strengthening.

Results: Patient reported reduced Pain Score of 2/10 along with a reduction in dosage of pain medication and improved Physical activity along with Muscle strength (4/5).

Conclusion: This case study shows that patient centered goals and early physiotherapy intervention could help the patient to reduce pain, improve physical activity and locomotion ability in palliative care.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 47: ROLE OF PALLIATIVE CARE IN DEMENTIA AND PARKINSONISM

Karthik ¹

Parkinson's disease (PD) is a slowly progressive multi-system neurodegenerative disorder, with no available disease-modifying treatment. The disease is a/w motor and non-motor symptoms like Dementia leading to impaired quality of life, disability and significant caregiver distress. PD is the second most common neurodegenerative disease worldwide, with its incidence and prevalence on the rise along with aging population. The characteristic classical motor includes bradykinesia, rigidity, resting tremor and postural instability. On-motor features including olfactory dysfunction, cognitive impairment, Dementia, psychiatric symptoms, sleep disorders, autonomic dysfunction, pain and fatigue. They also have greater and earlier need for institutional care. Patients with PD benefit early from PC in view of the impact of the disease impairing autonomy and QOL. The provision of PC in patients with PD focuses on unmet needs and should be aligned with patient priorities. It is recommended that a PC approach should be applied from the early phase, throughout the course of the disease, complementing but not replacing other treatments. However, like other patients with chronic neurological condition, the individual needs may vary over time, therefore it is suggested that a model of dynamic involvement of PC services should be adopted. Involving sports rehabilitation, to review the recurrent metabolic conditions, holistic approach, early intervention of symptoms, improve QOL and ADL, PC approach should be introduced early in the course of PD. It should be need-based, focusing on improving QOL and autonomy, ACP and support to caregiver. An ideal model of care would be interdisciplinary team providing clear care pathway and team work.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 48: EXPERIENCE IN BASIC INTERVENTIONS ADVISED ON A DAY-TO-DAY BASIS IN A TERTIARY CANCER CARE'S PALLIATIVE CARE UNIT IN GUWAHATI

Kahkasha ¹

Introduction and Objectives: Palliative Care is multidisciplinary and holistic care given to improve quality of life of patients who have serious life-threatening disease such as cancer. It addresses the person as a whole, not just the disease. The goal is to prevent or treat, as early as possible the symptoms and side effects of the disease and its treatment along with related psychological, social and spiritual problems. Aim was to not to get aggressive, working in harmony with patient and family care-givers’ idea of comfort and an improved quality of life, striking a balance between patient autonomy and counseling for dispelling unfounded fears.

Materials and Methods: Basic interventions were identified. All in-patient data over a period of a year was analyzed retrospectively and prospectively with special emphasis to number of patients advised such interventions, incidence of refusal to undergo any of the above-mentioned, reason behind them and if counseling led to thought conversion of the same.

Results: It was seen that many a times, patients or care-givers refused basic interventions out of unfounded fears and prejudice. A certain fraction of them could be counseled eventually. Blood transfusion had some gender bias.

Conclusion: With figures arrived at by this study, problem areas were identified and counseling strategy worked out in consonance with patient autonomy.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 49: BIO MEDICAL WASTE DISPOSAL FROM PATIENTS’ HOME AND PROBLEMS FACED BY THEM

Anita Patole ¹

Introduction: Cipla Palliative Care and Training Center provide home care services for the patients within Pune city who are suffering from cancer. Patients who are symptomatically stable or those who want to be cared at home are enrolled in home care service. Many patients have malignant wounds or bed-sores that need daily wound dressings. These patients face difficulty in wound dressing as they have limited resources. Most patient require assistance for transportation and are unable to bear expenses for wound management at nearby healthcare facility.

Aim and Objectives: To assess the level of awareness about biomedical waste (BMW) disposal in home care patients, family and care providers by:

Assessing the knowledge of patient and caregivers about BMW disposal
Understanding current methods used for disposal by caregivers
Highlighting problems and challenges faced while disposing BMW at home.

Material and Methods: The study was approved by the Ethics committee; subjects were recruited after a written informed consent. Consecutive samples of all patients with wound, and family member seen between 1^st oct to 31 Dec 2019, homecare areas in Pune city. Questionnaire developed in-house.

Results: Most of our participants are aware about BMW but unaware about its disposal. We educated them about BMW and waste segregation. Also explained about how to dispose such waste in community. The participants awareness about waste segregation was improved to dispose the waste as per protocol in community.

Conclusion: We believe that the results will help in recommending methods to handle biomedical waste generated at home.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 50: OTHER IMPORTANT ASPECT OF PALLIATIVE CARE - REHABILITATION

Vikram ¹, Republica Sridhar ¹

Palliative care involves not only Physical, Social, psychological care but also holistic approach to patient care. For patients who are disabled or with need of help in their daily living, an integrated team effort is required. We need to actively rehabilitate and not only think of medication. Right intervention with therapists and short activities are essential. The objectives of rehabilitation are:1) To include non-cancer patients, 2) Those who need rehabilitation (like post-trauma/accident), 4) Holistic approach, 5) Team intervention, 6) Those admitted in Palliative Care center or rehab center. For example - Mrs. Smrithi (name changed) 32 years female, fell out of 2nd floor window due to family argument. She was malnourished, low and depressed due to her divorce. Today with active intervention, brain activities, rehabilitation, energy management, and nutrition support, she is moving around with support, working part time and making her ends meet. Another example of Mrs. Kavitha (name changed) 72 years female, brought in after fall from bed, fracture of long bones and spine, with severe osteoporosis. Now she is active with rehabilitation and nutritional care. She is walking freely. Hence, rehabilitation is an important aspect of palliative care.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 51: END OF LIFE CARE – REFRACTORY SYMPTOMS IN EOL

Shree Sri Ram ¹

Reflective Case Study: Psychosocial care is care concerned with the psychological and emotional well-being of patients and their family/caregivers. These include issues of self-esteem, insight into an adaptation to the illness and its consequence, and numerous psychosocial aspects in special care areas like ICU. Mr Vijaykumar (name changed) 67 years male, known case of DCLD and CAD with severe LV Dysfunction, COPD and history of Acute renal infection requiring hemodialysis a year back is admitted in the ICU with an obstructed Umbilical Hernia. He underwent emergency Laparotomy. Post operatively patient continued to be on ventilator support with renal dysfunction for which he underwent dialysis again for another two episodes. Patient was shifted to palliative care ICU- MARUMAI center in view of long-term ventilation and difficult weaning. On day 2 after receiving the patient in our ICU we managed to step down the ventilator support with the help of good nursing care and psychological support given to the patient. On day 5 he continued to improve clinically, and finally trail extubation was attempted and successfully weaned out of ventilator on day 7. Patient was made ambulatory by the team. He passed away at home peacefully.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 52: USE OF METHADONE IN CHILDREN WITH MALIGNANT PAIN AT PUBLIC TERTIARY CANCER HOSPITAL

Mohammad Ishak Tayoob ¹, Spandana Rayala ¹, Gayatri Palat ¹

Introduction: Methadone is a long-acting strong-opioid used for treating children with cancer worldwide. Studies have shown that methadone is the drug of choice for patients with complex-neuropathic-cancer-pain syndrome which is not controlled with other opioids like morphine and fentanyl. It is also a cheap medication compared to other opioids, hence its relevance in resource poor setting. Methadone became available in MNJIO&RCC since March 2017. It is one of the centres with largest consumption of methadone. The data captured in the study would be first of its kind in Indian population and can contribute to develop guidelines for methadone use specific to children in our country.

Objectives: Review of usage of methadone for cancer pain in children at MNJIO&RCC. The objectives are: (1) To understand the demographic details of children on methadone during the study period, and (2) To understand the formal indication dosage and outcome of usage of methadone in paediatric cancer patients.

Methods: It is a retrospective study involving chart review of all children with cancer who are started on methadone during the study period between March 2017 to August 2019. Statistical analysis was done at the end of the study.

Results: Results show that methadone is an effective and safe opioid in children with morphine non responsive pain, and can be used for long duration without serious untoward effects with good follow up.

Conclusion: Methadone for cancer pain in children is a safe, cost effective and efficient analgesic option in resource limited settings.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 53: ANALYTICAL ASPECT OF USE OF MORPHINE - CASE STUDY OF CANCER PATIENTS

Pranab Kumar Basu ¹

Palliative care is a holistic approach. Palliative care can start from the beginning of diagnosis. This paper highlights the use of oral morphine by terminal cancer patients undergoing palliative care in Eastern India Palliative Care, Barrackpore, referred by government hospitals in West Bengal. The methodology used involved analyzing the longevity of the patient after taking morphine. The maximum period of survival and the minimum period of survival of the patients are analyzed statistically. Two years record of cancer patients registered to Eastern India Palliative Care, Barrackpore, West Bengal, are taken into account. The analytical aspect focuses on different type of cancer patients undergoing palliative care and using oral morphine for pain relief.

Conclusion: In west Bengal there is a poor scenario of access of opioids to patients undergoing palliative care. There are many side effects of opioids which are controlled with supportive medicines. Abuse and overuse of morphine due to improper usage results in vulnerability of cancer patients leading to vegetative state before death. So proper protocol of opioids must be maintained for sustaining patient's health. The analysis reveals a few exceptional cases of patients living up to two years from the date of using oral morphine.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 54: MULTI-MODAL APPROACH TO MANAGEMENT OF NEUROPATHIC PAIN IN EMERGENCY ROOM – ROLE OF INTRAVENOUS LIGNOCAINE AND MAGNESIUM SULPHATE

Akanksha Bansal ¹

Background: Approximately 40% of cancer patients report pain of neuropathic origin, that is challenging to control. It can be caused due to the disease or related to acute or chronic effects of cancer treatment itself. Inadequately controlled neuropathic pain leads to a poor quality of life. Guidelines advocate the use of a thorough clinical evaluation followed by a combination of anticonvulsants, antidepressants, N-methyl-D-aspartate (NMDA) antagonists, opiates and topical agents. However, when presenting with severe pain refractory to these medications, lignocaine (sodium-channel blocker) and Magnesium (NMDA receptor blocker) have shown positive response in decreasing neuropathic pain.

Objective: The primary objective of this study is to assess the analgesic efficacy of Intravenous lidocaine and intravenous magnesium-sulphate in patients with neuropathic cancer pain refractory to conventional medications.The secondary objective is to assess the tolerance, side effects and the symptom improvement with this therapeutic approach.

Methods: This is a prospective study conducted at a tertiary cancer center between January 2019 to December 2019. Cancer patients coming to emergency room (ER) with severe pain suggestive of neuropathic origin were included in the study. Pain assessed using Numerical rating scale and Neuropathic pain scale. Patients rotated to intravenous opioids if taking oral opioids or commenced on intravenous opioids if opioid naïve. Once neuropathic pain documented, Inj. 2% Xylocard (23mg/kg) and Inj. Magnesium Sulphate (2 grams) commenced. Pain scores documented on days 0,1,2,3 along with monitoring of vitals, side effects, breakthrough requirement and patient satisfaction with ESAS.

Results: Study ongoing. Till date 12 patients included in the study. All have shown good pain relief with the therapeutic approach.

Conclusion: The final results will be presented at the conference. The results thus far are promising.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 55: BUILDING COMMUNITY PALLIATIVE-INFORMED CARE FOR THE VULNERABLE IN TRIBAL VILLAGES OF ODISHA HIGHLANDS, INDIA

Bethsheba Eisher ¹, Karabi Lata Curtis ¹

Introduction and Objectives: The Asha Kiran Society works to see “just and compassionate communities, choosing and celebrating life” through a 40-bedded hospital, education, agriculture and health interventions across 107 tribal villages in Koraput district of Odisha. Despite some village development, the communities we serve have many vulnerable people who are elderly, mentally challenged or living with chronic diseases. They are unable to care for themselves and grossly neglected by family members. This prompted us to explore palliation-informed approaches to help communities care for their vulnerable members. We seek to empower “health teams” in each area consisting of local volunteers supported by our staff.

Methods: A 3-month targeted discovery process by our staff identified people in need of long-term palliative care through 2 sets of trainings to activate community health volunteers and thrice-weekly home-visits to potential patients.

Results: 25 villagers needing long-term care were identified and enrolled into home-based palliative care. Three-fifths (15) suffer from neurological and mobility challenges (hemiplegia-9, spinal injury paraplegia-2, TB spine-2, elderly with fractured femur-1, post Meningoencephalitis-1). Possible causes for hemiplegia include consumption of millet-based alcohol. A quarter (6) are cancer patients (breast-3, thyroid-2, skin-1). 3 persons with long-term mental illness and 1 suffering from chronic diabetes were also enrolled. In most cases the team documented improvement in quality of life.

Conclusion: Our action research shows significant number of people with neurological impairment in need of a palliation-guided long-term care in the tribal villages we serve, and the value of simple interventions.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 56: INTRODUCING PALLIATIVE CARE IN PUNJAB REGION: MY EXPERIENCES

Harjot Singh ¹

Despite its limited coverage, palliative care has been present in India for about 20 years and in Punjab from last 3 years. Awareness related to Palliative care is very limited even in doctor's fraternity in region of Punjab. Obstacles in the growth of palliative care in Punjab are many which include factors like population density, poverty, geographical diversity, restrictive policies regarding opioid prescription, workforce development at base level. Factors also include limited national palliative care policy and lack of institutional interest in palliative care. Nonetheless we have reasons to be proud in that we have overcome some hurdles and have seen palpable changes in the mindset of health care providers in Amritsar with respect to need of palliative care in Punjab especially Amritsar region by Conducting Foundation course for doctors and Nurses followed by Workshop on Palliative Care and recently established regional centre for providing Certificate Course in Essentials of Palliative for Doctors, Nurses and Volunteers approved by IAPC in my University.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 57: FAMILY CAREGIVER BURDEN AND QOL OF PATIENTS WITH ADVANCED MALIGNANCY ON BEST SUPPORTIVE CARE – A PRELIMINARY REPORT

M Manavalan ¹

Introduction and Objectives: Most patients with cancer in our country are cared for by their family. The burden felt by these family caregivers are often poorly understood. In this study, we chose to focus on patients on Best Supportive Care and their primary family caregiver, assessing their QOL and burden.

Methods: This was a cross-sectional study where patients on best supportive care and their primary family caregivers were approached during their scheduled visits to the Palliative Care Unit of our hospital, for participation in this study. Demographic details were collected. Patient's QOL and Family Caregiver's Burden were assessed using the local language version of EORTC-C15-PAL and Zarit Burden Interview (ZBI) respectively.

Results: The results shown here are part of an ongoing study. 45 patients and their family caregivers were assessed for this analysis. Among patients, 24 (53.3%) were males. Mean Age - 56.3 years. Among Caregivers, 29 (64.4%) were females. Mean age was 47.8 years. 97.8% were 1^st degree relatives of the patient. Most patients had ECOG Performance 3 (30,66.7%) [Table 1].

Table 1.

ECOG performance analysis

	ECOG

	≥2	3	4	Significance (P)
n	9	30	6	<0.01
ZBI	28.3	34.8	41.5	<0.01
Global QOL	44.4	21.6	13.8	<0.01
Physical functioning	59.2	29.5	13.3	<0.01
Fatigue	50.6	72.9	66.6	0.01
Pain	24	53.8	61.1	<0.01

Open in a new tab

ZBI: Zarit Burden Interview, QOL: Quality of life, ECOG: Eastern cooperative oncology group

Significant correlates of ZBI score with EORTC-C15-PAL are tabulated [Table 2].

Table 1.

ZBI score correlation

ZBI	ZBI score	Significance-P
Physical functioning	−0.519	P<0.01
Emotional functioning	−0.530	P<0.01
Global QOL	−0.633	P<0.01
Insomnia	0.347	P=0.02
Pain	0.410	P<0.01

Open in a new tab

ZBI: Zarit Burden Interview, QOL: Quality of life

Conclusion: These results show burden is significantly impacted by symptoms and performance of the patient. We may reduce burden by targeting them, with specialist palliative intervention as required. Further study is required as the small sample size limits the power of the study.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 58: GUIDELINES FOR WORKING WITH SPOUSES OF PERSONS WITH MOTOR NEURON DISEASE: NEURO-PALLIATIVE CARE APPROACH

G Manjusha Warrier ¹

Background: Past decades’ research on Motor Neuron Disease (MND) has concentrated on medical management. International guidelines of care for persons with MND highlight the need for a palliative approach to care and the need to involve the spouse in the care process. At present, there are no guidelines for healthcare professionals working with spouses of persons with MND.

Aim: To develop guidelines working with spouses of persons with MND for healthcare professionals.

Methods: The study followed an inductive qualitative approach, with an interpretative phenomenological analysis of three longitudinal in-depth interviews, spreading across five months. The objective was to find meaning from the lived experiences of spouses, understand their needs and thereby formulate guidelines for working with them. Thirteen spouses of persons with MND were interviewed. A thorough review of existing literature on the needs of spouses of persons with MND strengthened the guidelines.

Results: The needs derived from the analysis were categorized as emotional, social, system-related and care-skills. Based on these needs, guidelines for working with spouses engaged in home-based care of persons with MND was framed. It included specific issues and ways to handle it with case excerpts. The guidelines contain two sections: guidelines to aid spouses to care for persons with MND, which mentions about practical skills and knowledge to provide better care at home. The second part consists of guidelines for spouses for their own wellbeing.

Conclusion: The guideline is expected to ensure the standard of care and thereby improve the quality of life of spouses of persons with MND, as well as the persons with MND. The detailed contents of the guidelines will be presented.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 59: JOURNEY WITH AN ADOLESCENT BOY WITH DUCHENNE MUSCULAR DYSTROPHY AND HIS fAMILY: A CASE REPORT

S Arun ¹

Introduction: Duchenne Muscular Dystrophy (DMD) affects approximately 1 in every 3500 live male births. In the absence of effective disease-modifying therapies, DMD remains an illness with high palliative care needs. Recent therapeutic advances have resulted in better management of the symptoms and recommend comprehensive multidisciplinary care. A family of a patient with DMD faces various psychosocial problems closely aligned to the progression of each stage of the illness.

Aim: Social casework intervention with the family of child with DMD who face psychosocial problems due to the transient, debilitating nature of DMD.

Methods and Findings: This is a case of 15 years old boy with DMD and his life events during the course of illness. The child and his family were seen for the last three years and have had completed 27 sessions of intensive individual and family therapy. During this period, the child has lost ambulation and is currently wheelchair-bound. The sessions are conducted by a trained child psychotherapist under the supervision of consultants. The sessions have focused on psychosocial aspects from assessment to various psychosocial interventions as the disease progressed. The psychosocial interventions are Psychosocial Assessment, Need assessment, Individual therapy for anxiety, social skill training, educational level intervention, Family therapy, Individual therapy for siblings, Caregiver burden, Socialization, Parent management training, Disease self-management and Community-based peer education program.

Discussion: Intensive social casework approach will help clients and family to cope effectively with the transient progressive nature of Duchenne Muscular Dystrophy (DMD) and improve the quality of life of the patient and family.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 60: PRIMARY PREVENTION THROUGH COMMUNITY

Paras Tiwari ¹

Lifestyle changes in past decades has entailed upon an increased incidence of cancer and other non-communicable diseases which are taking heavy toll globally leading to approximately 71% of mortality. In such a scenario generating awareness within the community is of immense importance so as to inculcate healthy lifestyle which has been targeted by Cancer Aid Society. Since last three decades through student-volunteers who are taught about healthy lifestyle including balanced-diet, regular exercise, keeping away from carcinogens, tobacco abuse including active and passive smoking etc. Cancer Aid Society have done: 1) Assembly lectures are around 89; 2) 116 tobacco free declaration of the schools; 3) 37224 students are now aware through participating in volunteering and social work. Carrying the literatures in 12 regional languages, the student-volunteers propagate awareness manifold within their family as well as other near and dear ones about ‘what to do’ and ‘what to not do’ through one to one contact. They further help us in preventing smoking at homes as single smoker is responsible for making other family members a ‘passive smoker’ increasing the chances of getting NCDs.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 61: KNOWLEDGE OF PALLIATIVE CARE AMONG INTERN DOCTORS AT A TEACHING HOSPITAL IN SOUTH INDIA

Deepak Varughese ¹, Venkata Raghava Mohan ¹

Introduction: Palliative Care is an approach that improves the quality of life of patients and their families who are facing problems associated with life threatening illness. It is estimated that less than 1% of the Indian population has no access to palliative care. This study aims to study the knowledge and attitudes of medical interns towards palliative care.

Methodology: A cross sectional study design was used. All interns working at the hospital were approached. 104 interns responded and gave consent. A questionnaire was administered to the interns. Data was analyzed using SPSS v23.

Results and Conclusions: The study showed 17.3% of subjects had good knowledge of palliative care, 60% of subjects had fair knowledge while 22.11% of subjects had poor knowledge.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 63: NEONATAL PALLIATIVE CARE: REDEFINING STANDARDS OF CARE IN NEONATOLOGY

Mohammad Ishak Tayoob ¹, Spandana Rayala ¹, Hima Bindu Singh ¹, Gayatri Palat ¹

Introduction: Neonatal palliative care is defined as the planning and provision of supportive care during life and end-of-life care for the baby and his or her family when managing an appropriate life-limiting condition. In India, there is huge gap between the needs and provision of neonatal palliative care. To address this, a landmark project “Neonatal Pain and Palliative Services” has been launched in the month of July 2019 at Niloufer Children's Hospital, Hyderabad.

Aims and Objectives: The objectives are to record the pattern of referrals during the initial six-months period of starting neonatal palliative care services.

Materials and Methods: A retrospective observational study of the data collected to understand referral pattern to the services since the initiation of the project.

Results: There is a clear increase in referral numbers since establishment of the services with increasing number of doctors enrolling neonates with life limiting and life threatening conditions for neonatal palliative care. The various conditions included babies with genetic syndromes, severe birth defects, inoperable heart diseases, babies on long-term ventilator who are not recovering, etc.

Conclusions: The provision of technology at the neonatologist's disposal has all increased neonatal survival. However, when technology becomes more burdensome than beneficial, when a newborn's quality of life seems lost due to severe neurologic injury, or when being too premature and too small—or with multiple congenital anomalies, Neonatal palliative care will be helpful in improving the quality of life.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 64: BURNOUT AMONG PALLIATIVE CARE PROFESSIONALS

Ravinder Mohan ¹

Introduction and Objectives: Literature shows evidence of burnout among Palliative Care Professionals (PCP). PCPs handle death and dying routinely. At times they handle patients whose symptoms may be refractory to management. Handing of emotions of patients and their care givers during the disease trajectory is often stressful. This study aims at finding the level of burnout among the PCPs at Cansupport.

Materials and Methods: Maslach Burnout Inventory (Modified) was used to find the levels of burnout among the PCPs. 54 PCPs from Cansupport Home Care Teams participated in the study and they filled the questionnaire of the modified Maslach Burnout Inventory. Anonymity was maintained. Incomplete questionnaires and those with the identity of the participant were excluded from the study. Analysis of the questionnaires was done to get the results of the study.

Results: There was no indication of burnout among the participants. 98.7% felt that they are made for this job, 97.8% reported that they effectively dealt with the problems of their patients, 97.2% of the participants reported that they are positively influencing the lives of the people through their work and 94.1% felt happy after working closely with their patients.

Conclusion: Such studies need to be repeated periodically so that the professionals could be screened for the degree of burnout. Palliative Care organizations invariably have Strategies of Self-Care for Palliative Care Professionals. Such studies help the managers know how well these strategies are working. If we want our Palliative Care Professionals to provide excellent Palliative Care to our patients they must be safeguarded against Professional Burnout.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 65: A PSYCHO-SOCIAL APPROACH TO PERCEIVED STRESS AMONG CANCER PATIENTS AND CAREGIVERS: IMPLEMENTING EXPRESSIVE ARTS THERAPY

Linoto Assumi ¹, Poonam Doley ¹, Pranami Sarmah ¹

Introduction and Objectives: Cancer, being understood and seen as a devastating disease, instils significant psychological and social problems among patients and their families. From the point of its investigation to diagnosis and treatment, psychological distress and social problems gradually elevate in most cases. The objective of the study is to determine the effectiveness of psychosocial approach in reducing the level of perceived stress among cancer patients and their caregivers by implementing Expressive Arts Therapy which is a multimodal therapeutic approach.

Methods: The testing tool ‘Perceived Stress Scale’ was used to measure the perceived stress. The ‘Session Rating Scale’ was used to measure the effectiveness of the therapy. The techniques of Expressive Arts Therapy used were meditation, music, movement, art, writing and group sharing. By using the convenience sampling technique, a total of 40 patients and 48 caregivers from the wards were included in the study.

Results: In the Perceived Stress Scale, out of 40 patients 32 had high level of stress, 5 moderate and 3 low. Out of 48 caregivers, 41 had high level, 5 moderate and 2 low. Post therapy session, the Session Rating scale scoring showed that out of total 88 participants, 72 found the session highly effective, 14 moderately effective, and 2 mildly effective.

Conclusion: While cancer and its treatments tremendously impact the psychological and social aspects of patients and their families by generating stress and other immeasurable struggles, a decent psychosocial approach with implementation of Expressive Arts Therapy may reduce the elevated levels of perceived stress.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 66: PALLIATIVE CARE FOR PARKINSONISM: A LITERATURE REVIEW

AS Lijimol ¹

Introduction: Parkinson's disease (PD) is a slowly progressive multi-system neurodegenerative disorder associated with motor and non-motor symptoms leading to poor quality of life, disability and caregiver suffering. Palliative care can provide a holistic approach to meet their multi-faceted needs, including symptom control, communication needs and caregiver support.

Objectives: To review the palliative care needs and role of palliative care in patients with Parkinson's disease.

Methods: Original research articles and systematic reviews from 2000-2019 were selected and studied using the following keywords: Palliative care, Parkinson's disease, palliative care needs.

Results: The concept of palliative care in PD is still poorly defined and poorly implemented into daily clinical practice. Literature pointed out that patients with PD had similar or higher levels of palliative care needs as patients with advanced cancer. Also, that palliative care for PD emphasizes an interdisciplinary and holistic approach to symptom management. Potential palliative care needs, including high symptom burden and grief, were common in PD patients. Obstacles in access to palliative care includes poor understanding and recognition of palliative care needs, lack of specialist palliative care services and unavailability of an accepted structure for sustainable palliative care provision.

Conclusion: A palliative care approach should be introduced early in the course of PD. Palliative care for PD should be need-based, focusing on QOL and support to caregiver. An ideal model of care would be interdisciplinary team providing care pathway and a single point of contact. Future directions should include development of tools to guide prognostication and referral to specialist palliative care, assessment of specific palliative care intervention for patients with PD and model to guide caregiver assessment and support.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 67: CATALYZING YOUTH PARTICIPATION IN PALLIATIVE CARE

K Aboobacker Sidheeque ¹

Introduction: Pallium India encourages youth to participate in community-based palliative care. The involvement of youth in PC promotes social participation and a sense of community ownership. The youth provide support to persons with health-related suffering and serve as ambassadors for PC in their own families and their neighbourhoods.

Objectives: To describe activities conducted by Pallium India to sensitize youth to PC and ensure participation in community-based PC initiatives.

Methods: This is a narrative presentation of Pallium India's youth sensitization and mobilization activities since 2018. Pallium India conducts sensitization programs at schools, colleges and youth clubs in Trivandrum in collaboration with National Service Scheme. 25 student volunteers are identified from each institution to form a PC youth club. Club members are then connected to Pallium India's link-centers run by volunteers. The aim is to strengthen youth voluntary participation through link centers. This will ensure continued volunteer support for link centers while meaningfully engaging young volunteers.

Results: Palliative care sensitization sessions were held at 35 institutions and 12 youth clubs since 2018. A total of 3500 people attended sensitization sessions. 40% (~ 1400) registered as volunteers, of which 25% (~350) have continued as volunteers for three months. Most of them are assisting Pallium India and link centers in fundraising, generating public awareness and visiting the sick at homes.

Conclusion: Introducing vibrant youth at the centre of any social process can result in inclusiveness and sustainable participation. The initiative helped the youth population identify a genuine chance to better their own lives through providing services to a population in need and for the community. Such initiatives if taken up by governmental and non-governmental bodies can strengthen the community mobilization initiatives for palliative care.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 68: PSYCHOSOCIAL DISTRESS: A CASE REPORT OF IDEAL HOSPICE CARE INDICATION

Deepshikha Thengal ¹, Gayatri Gogoi ¹, Dalimi Gogoi ¹, Wazir Bin Qutub ¹, Panna Bharali ¹, Ashmita Kalita ¹

Palliative care aims at minimizing pain and suffering of a terminally ill patient. Amongst the oral-cancer patients in Northeastern region of India, tobacco chewing has been found to be the main etiology. We present a case-report of an oral cancer patient with history of tobacco chewing, who owned a pan-shop. After he was diagnosed with cancer, all savings were spent and there was no money to survive and for treatment. At the time of admission to our care, he was a post-operative case of oral cancer, advanced stage with local bony and soft tissue metastasis. He had a large fungating wound, poor oral hygiene, and foul-smelling discharge. During assessment we found that the patient and his family's psycho-social issues were deeply distressing. His 18-year old son didn't meet him due to disfigured appearance. His wife, 36 years of age was unable to cope up with his disease. When patient attended Palliative Care OPD in a tertiary care hospital, she was asked to do wound dressing which she could not. Patient was doing this with the help of a mirror. Our care was holistic - local, general and psychosocial counseling regularly. The wound was improved. As his family had no other means for sustainability, we prepared the family to shift him to hospice care taking further consent from his extended family. We provided the financial and other logistical support till end and networked with hospice authorities. Our aid greatly relieved the patient and his family till his last breath and his family is ever grateful.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 69: BANGALORE BAPTIST HOSPITAL MODEL: LESSONS LEARNT FROM 25 YEARS OF INTEGRATED PALLIATIVE CARE SERVICE IN A MULTISPECIALTY HOSPITAL WITH COMMUNITY OUTREACH

Stanley C Macaden ¹

Introduction and Objectives: Bangalore Baptist Hospital (BBH) is a multispecialty hospital governed by Christian Medical College and Hospital, Vellore. A fully integrated palliative care service at BBH was initiated in January 1995 for all life-limiting conditions such as incurable cancer, end-stage chronic diseases, HIV/AIDS, older persons with PC needs and for long term care. This comprehensive service in Bangalore and villages of four rural taluks included outpatient, in-patient and home care, bereavement support, volunteer involvement, training and research. Lessons learnt from 25 years of this service is reflected on and shared for discussion and application as relevant.

Methods: The best practices over these years are highlighted – 1) Non-segregation 2) Subcutaneous route and ‘Family driver’ 3) Combined clinics 4) Emphasis on home care 5) Bereavement support 6) Improving interface with Intensive Care and medical specialties. 7) Involvement in national and international training and research 8) Working with Government to build capacity 9) Volunteers’ training and involvement.

Results: Family feedback after death of a patient has been encouraging and affirming that the service was effective. Three ‘Best Poster’ awards at international conferences (2000 Cardiff, 2007 Mumbai, 2019 Kochi) over the past 25 years as recognition of quality care.

Conclusion: A life-limiting illness shatters our wholeness. PC service attempts to restore the broken wholeness and improve QoL. A fully integrated service draws on expertise of other colleagues and benefits from facilities available in the institution. It also enables cost-effective continuum of care which is satisfying to the person and family involved. Rural service challenges add to experience and enrichment of services.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 70: SCOPE OF AYURVEDA IN PALLIATIVE CARE – A NARRATIVE REVIEW

VV Vijesh ¹

Introduction: The use of complementary and alternative treatment is growing, and Ayurveda takes a place of choice. Throughout the world, patients suffering from cancer and other difficult to cure disease with serious health related suffering are turning to complementary and alternative medicine (CAM) for respite. Patients with cancer turn to CAM as a supplement to allopathic therapies, supportive care, and improving QoL. Also, people from remote parts of the country may have limited access to allopathic medicine for economic or accessibility reasons and may resort to CAM. As CAM is culturally and socially sensitive, context specific studies and reviews are the need of the hour to study their scope in PC.

Objective: Ayurveda being the traditional system of medicine in India is the first choice CAM in the country. The purpose of this review is to highlight the effects of Ayurveda treatment on patients in need for PC.

Methodology: Original research articles and systematic reviews from 1998 to 2019 were reviewed using the key words complementary and alternative medicine, Ayurveda, palliative care, cancer and pain management.

Results: The narrative review indicates that Ayurveda is useful as an adjunct therapy for relieving pain and constipation, improving appetite, decreasing anxiety/depression thus improving overall QoL. However, due to paucity of studies, benefits of Ayurveda could not be clearly identified. Preliminary results tend to show some positive effects of Ayurveda in PC.

Conclusion: Evidence based Ayurveda integrated with allopathic medicine can play an important role in improving PC delivery in India. Policy makers should encourage Ayurveda practitioners to record evidence and conduct more studies to determine the benefits of Ayurveda in PC.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 72: ASSESSMENT OF PALLIATIVE CARE NEEDS IN STAGE 5-CKD PATIENTS ATTENDING DIALYSIS OUT-PATIENT UNIT

Aneetha Satish ¹

Introduction: The 2018 Lancet Commission on Palliative Care reported End Stage Renal Disease (ESRD) as one of the 21 major conditions contributing to avoidable serious health-related suffering. The age-adjusted incidence of ESRD in India, is estimated to be 229 per million population and is projected to increase, as the populations age and the prevalence of NCD increases.

Objectives: Although PC is well established to improve the QoL for patients on dialysis as well as those who are not, Renal Supportive Care (RSC) is relatively a new and emerging field of care in India. RSC requires close dialogue and integration of core competencies of renal medicine- optimizing blood pressure and co-morbidities, maintaining fluid, calcium and phosphate balance, correcting anemia, along with the competencies of PC-expertise in managing symptoms, and skills in communication that supports informed decision making, transitioning goals of care and care of the dying. RSC becomes possible when the care needs are identified and consensus for integration is built amongst both the specialties.

Methods: iPOS S Renal was used for surveying concerns of 80 CKD patients attending dialysis OPD at an academic multispecialty hospital and the results were analyzed.

Results: The analyzed results of the incidence and severity of physical, psycho-social, practical, functional and financial concerns of CKD stage-5 patients using the iPOS-S Renal will be presented.

Conclusion: The presentation will elaborate on the priorities for RSC in the population attending dialysis OPD at a medical college hospital in central India, along with the pathway to building consensus and integration of RSC.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 73: SOCIOECONOMIC STATUS OF CANCER PATIENTS: A STUDY IN A TERTIARY CANCER HOSPITAL

Bidisha Sarma ¹, Kabindra Bhagabati ¹, Tarun Sonowal ¹, Uttam Changmai ¹

Introduction and Objectives: India has one of the highest cancer incidence rates. The main reasons for this being late detection, lack of awareness, lack of proper communication, increased urbanization, air and water pollution. In India the estimated number of people living with the cancer is around 2.5 million. In the treatment of Cancer or any such life-threatening diseases along with other factors, socio-economic status of a person plays an important role. Through this study, we want to analyze the socio-economic status of our patients under treatment.

Methods: Patients were chosen between the ages of 18-60 years. The socio-economic status scale used is Kuppuswamy. It is the most widely used scale for determining the socio-economic status of an individual or a family. The data was collected through individual and family interview.

Results: Our study shows that 2% of patients are the upper class. 6% are upper middle class, whereas 10% in lower middle class. 22% of patients are in upper lower class and rest of the patients (60%) in the lower class. The lower-class patients need all types of support including free treatment, free transportation and financial assistance from NGO/Government.

Conclusion: The patient with cancer and their family members face a lot of socio-economic problems. Not only in terms of finance, but also socially. The government schemes and funds are helping the poor people but some are not aware of it and don't want to apply because of long time for approval.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 74: A PILOT STUDY ON EFFECTS OF DANCE-BASED GROUP EXERCISE PROGRAM ON PHYSICAL FUNCTION, TIREDNESS AND WELLBEING IN PALLIATIVE CARE PATIENTS

Gargi Kulkarni ¹

Introduction: The primary goal of physiotherapy in palliative care is to achieve the best possible QoL for both patient and their families. Other goals are to maintain or regain physical independence and preserve patient's autonomy. As the disease progresses, along with physical disability, patients experience emotional suffering and are reluctant to perform exercises. As this exercise program is a group-based activity with music and dance, patients are enthusiastic and motivated to exercise.

Aim: Aim of this study is to evaluate the effectiveness of a dance-based group exercise program on - Physical Function, Tiredness, Wellbeing in palliative care patients.

Methods: Patients (N=15) undergoing scheduled dance therapy sessions using folk and rhythm-based music which includes an introductory session followed by pre-assessment session. Each exercise session is divided into: Warm up, Main activity, Cool down with meditation. Main activity focuses on aerobic and resistance training. The last session is divided into group session followed by Post Assessment. Physical function is evaluated by METs (Metabolic Equivalents), tiredness and wellbeing is evaluated by two components of ESAS pre and post-program. The total duration of the sessions is 8 weeks.

Results: Preliminary analysis shows an increase in average post-test scores for wellbeing and METs in males and females which can be indicative of benefit to participants. There is also a decline in average post-test fatigue scores among males and females.

Conclusion: Dance-based group exercise was found to be beneficial among the participating cohorts. This has a potential for improving services and overall QoL in patients.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 75: UJJWAL: A PROJECT TO EMPOWER WOMEN BENEFICIARIES THROUGH COST EFFECTIVE INTERVENTIONS

Sana Fathima ¹

Introduction: Empowerment for a woman is through proper interventions which can help her to have the skills to improve her existing role as a caregiver or as a patient. Several studies showed that women are the major informal care providers to patients with chronic medical conditions and disabilities. Most of them face problems within the family and in the community where they live.

Objectives: To empower the women beneficiaries of Pallium India through cost effective interventions to improve their quality of life.

Materials and Methods: We have designed a needs assessment tool which includes baseline data, essential/basic amenities, need for medical support, vocational rehabilitation and house modification. The data is collected during home visit. Based on the needs-assessment, we planned interventions to empower the women in the family to be financially self-sustained and support rest of the family members. If the women require additional training in any field, the Pallium India team would assist.

Results: 41 women have received our services in the last year. We continue to monitor and support them. All the women are now able to support their families with the income generated through this.

Conclusion: Empowering women through different strategies of rehabilitation leads to improved quality of life of patients and their families. Pallium India believes this project as a novel effort which can change the life of our beneficiaries through quality and cost-effective interventions to meet the social determinants of health.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 76: A DECADE OF COMMUNITY-BASED PALLIATIVE CARE – NEEDS, EXPECTATIONS AND PROFESSIONAL CHALLENGES

P Vibha ¹

Introduction and Objectives: The SVYM, Mysuru, has been providing community-based palliative care for over a decade. The services are provided by a team of doctor, nurses, counsellors and health facilitators. During the last decade, 1300 patients have been provided service. About 300 patients are receiving care at any time. The objective of the study was to understand the needs of the patients, their priorities for palliative care, the identification of medical, social, psychological, spiritual needs by the visiting team.

Methods: All of the current care receivers were systematically assessed using a semi-structured proforma along with the administration of W.H.O. Self-reporting questionnaire (SRQ).

Results: Patients diagnosed of cancer (60%), neurological problems, dementia, and intellectual disability. There was an equal need for social/financial interventions as medical interventions, as over 90% of the patients were from the BPL category. There was a high level of psychological distress both in patients and their caregivers. The team recognized a need for some of the patients to receive care in the in-patient facility. There was a high degree of satisfaction for the service. There is also a need to develop simple, easily applicable psychological/spiritual interventions.

Conclusion: Community care of persons needing palliative care is feasible and effective. There is a need for further innovation.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 77: NUTRITIONAL STATUS IN GASTRO-INTESTINAL CANCER PATIENTS ADMITTED TO PALLIATIVE CARE WARD USING SUBJECTIVE GLOBAL ASSESSMENT FORM AND ASSESSMENT OF THEIR SERUM ALBUMIN LEVELS IN THE LAST 1 MONTH

Neethu Susan Abraham ¹, Sushma Bhatnagar ¹, Seema Mishra ¹

Background: The incidence of malnutrition amongst patients with cancer has been estimated to be between 40 and 80%. The prevalence of malnutrition is dependent on factors like tumor type, location, stage and treatment. Subjective global assessment (SGA) is a validated method of nutritional-assessment based on features of medical history and physical examination. Albumin is an objective parameter often used in clinical studies to measure long standing malnutrition.

Aims: The aim of this study was to determine patient outcomes in terms of nutritional status by the use of the scored SGA as a nutrition assessment tool in gastrointestinal cancer patients in in-patient unit of palliative care, IRCH, AIIMS, New Delhi, and to determine their serum albumin levels within last one month.

Methods: A total of 40 patients diagnosed of gastrointestinal cancer were assessed using SGA form cross-sectionally. Serum albumin levels in the last one month also assessed. The study was carried out for a period of 3 months.

Results: Of 40 patients, Ca-Colon/Ano-rectum (16), Ca-GB (12), Ca-Stomach (7), Ca-Pancreas (3) and Cholangiocarcinoma (2). Average age of participants were 48.8 years. 22 males and 18 females. Among them, 14 were well nourished (35%) and 26 were malnourished (65%); Out of them, 17 were mildly-malnourished (42%), 4 were moderately-malnourished (10%) and 5 severely-malnourished (12%). The total average albumin value was found to be 3.5 g/dl. 13 patients (32%) had albumin values less than 3.0 g/dl. The individual average albumin values were found to be 4.1g/dl in the well-nourished; 3.4 g/dl in the mildly-malnourished; 2.9 g/dl in the moderately-malnourished and 2.2 g/dl in the severely-malnourished groups.

Conclusion: Malnutrition in gastro-intestinal cancer patients is a significant problem; careful assessment and interventions are necessary to improve their quality of life.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 78: CASE STUDY EXPLORING THE PROBLEMS FACED BY FAMILIES OF PATIENTS AT END OF LIFE AND ITS MANAGEMENT BY HOME BASED PALLIATIVE CARE

Priya Singh ¹

Introduction: Specialist home care services are intended to improve symptom control and quality of life, enable patients to stay at home, and avoid unnecessary hospital admission. End-of-life care aims to helps to live as comfortably as possible in the last days.

Aims and Objectives: This case study is the reflection on managing a patient using a multi-disciplinary approach where the challenges included - Palliative physician availability with comprehensive care planning, Timely family support, Coordinating timely referrals.

Methods: A 54-year old single male diagnosed with CNS Lymphoma with Leptomeningial and skeletal metastasis was referred to Homecare services. The primary concerns were – Pain and delirium, family anxiety regarding EOL care at home. The team outlined the goals of care and an individualized care plan to help maintain his quality of life. Family members were assured and supported with counseling.

Results: Keeping open communication with patient and family, the homecare team was able to address the main concerns and empower them to take care of the patient at home, thereby respecting the patient's wishes.

Conclusion: We were able to manage the concerns of the patient and keep him pain free. The patient passed away peacefully at home with relatives by his side. The relatives were provided bereavement support by the team. This case outlines the importance of a multi-disciplinary team in EoLC at home.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 79: PALLIATIVE CARE NEEDS IN STROKE: A LITERATURE REVIEW

Anaya Ajithan ¹, AS Lijimol ¹

Introduction: Stroke is one of the major global public health problems. Stroke has a high symptom burden worldwide and is one of the prominent causes of morbidity, mortality and disability. It impacts patients and their families in various ways, including physical, emotional, social, and spiritual aspects. Both patients and caregivers report poor health-related quality of life (HRQOL) after stroke.

Objective: To review the PC needs in stroke care and current barriers in access to palliative care.

Methods: Quantitative and qualitative research articles, meta-analysis and systematic reviews from 1997-2019 were selected and studied using the following keywords: Palliative care, stroke, palliative care and stroke.

Results: Studies have shown that prevalence of disability in stroke is between 24% and 54%. The literature mentions that patients with stroke and their informal caregivers get improvement in their QoL when their physical, psychological, emotional, spiritual and practical needs are anticipated and addressed. There is less communication from the physician about PC and EoLC in stroke patients, compared to patients suffering from cancer. Unawareness of the professionals and caregivers regarding PC is a major barrier in access to PC for stroke patients.

Conclusion: Palliative care should be incorporated primarily into the care trajectories of people with life limiting/threatening illness such as stroke. Ensuring the quality of life of the patient and caregiver requires active intervention from the medical team in a setting of stroke. Physical disabilities were viewed as the most significant factor in reducing the quality of life.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 80: TELEPHONIC BEREAVEMENT SUPPORT FOR AGGRIEVED FAMILY

Saswati Sarkar ¹, Sunipa Panja Gupta ¹, Shrikant Atreya ¹

Introduction: Palliative care is a holistic approach that provides comfort care to both patients and family. The loss of a close one to cancer can result in severe despair among family. Bereavement support aims at preparing patients and family for the loss and help them transition smoothly through the end of life experience.

Methods: This was a part of the routine bereavement telephone service provided to family members of the patients who were registered with palliative care unit, Department of Palliative Care and Psychooncology, Tata Medical Center, Kolkata to evaluate the service as perceived by the family members. Bereavement call was provided to family members between 15^th and 30^th day post death of the patient. This included patients who expired between January 2019-September 2018.

Results: Number of bereaved families called - 126. 63% patients’ family responded to our call. 96% agreed that they are satisfied with concern showed to them. 26% of patients’ family showed willingness to get calls in future and 74% not willing to let anyone remember their past. 80% of patients’ family well coped with present situation and 20% patients’ family could not overcome grief. 96% of patients’ family appreciated the services of palliative care like end of life care, staffs’ behaviour.

Conclusion: People were heartened to note that such service exists especially and family members are provided bereavement service and counseling after the patient's demise. They were especially satisfied with the service provided and the holistic and a multidisciplinary care that they received.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 81: NEUROPATHIC PAIN

Republica Sridhar ¹, Vikram ¹

Introduction: Neuropathic Pain is caused by damage or disease affecting the somatosensory nervous System. It may be associated with abnormal sensation called dysesthesia or pain from normally non–painful stimuli (allodynia). It may have continuous and/or episodic (paroxysmal) components.

Objectives: (1) To include Patients with cancer and difficult pain and neuropathic pain to whom usual Morphine and other Step Ladder medication doesn't respond. (2) To find out the physiology of pain and intervene to provide quality of life. (3) Take a holistic approach, to find out the Actual diagnosis.

Methods: Clinically proven cases, with cancer and metastasis patient admitted with severe pain to our center. Both shall be discussed in the presentation: Case A: Patient 42 years male with cancer of lung and metastasis admitted in cancer center for pain management; Case B: A 60 years lady with ovarian cancer multiple metastases especially 4th rib, liver, dorsal and lumbar spine, hilar nodes and abdomen nodes.

Conclusion: Neuropathic pain though complex we need to evaluate the outset and duration. It is not all about Cancer pain or Neuropathic pain and Palliative care and Morphine. But look at the correctable and have the right differential diagnosis.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 82: CONSTRUCTION AND FACE VALIDATION OF A CANCER COPING QUESTIONNAIRE (CAN COPE)

Sravannthi Maya ¹, Surendran Veeraiah ¹

Objective: The word ‘Cancer’ in India is associated with death, taboo, stigma and coping with a cancer diagnosis is an essential skill that would help patients in accepting the illness and its outcomes. The aim of the study is to develop an effective tool to assess coping mechanisms employed by Indian cancer patients.

Methods: The questionnaire construction (in English) included initial pooling of items from prior coping questionnaires, literature, expert views, interviews with patient-carer dyads, and cancer survivors. The expert panel (n=8) consisted of oncologists, psycho-oncologist, psychologists, cancer survivor, and patients-carers. Four rounds of Delphi and three field testings were done establishing face validity and content validity for the questionnaire.

Results: Initial pooling consisted of 155 items and the eight-member panel reviewed them resulting in 87 items. The second round of Delphi resulted in 60 items and the third round resulted in 36 items. Overlapping, inappropriate and culturally not acceptable items were removed. In the fourth round of Delphi, a ‘5-point Likert scale’ response was developed including the expert panel suggestions. The 36 items were eld-tested: First test: 36 items – 30 retained; second test: 30 items – 33 outcomes; thirds test: 33 items – 29 finalized.

Conclusion: 29 items were consolidated as a tool for assessing coping mechanisms among Indian cancer patients. Research implication includes establishing reliability and validity along with response scoring in order to attain statistical significance. Clinical implication translating the tool into regional languages would ensure wider usage and applicability of the tool in day-to-day clinical practice.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 83: PROTOTYPE PRESENTATION ON COMPREHENSIVE PALLIATIVE CARE AT JORHAT PALLIATIVE CARE UNIT

Prathana Chutia ¹

Background: Introduction of palliative care in Jorhat Medical College and Hospital helps in improving quality of life of patients along with family members. It helps the patient to cope with the current situation, also to manage other problems and symptoms that helps the patient to improve their quality of life.

Case Story: Mr. X, 65 years old male patient is diagnosed with Carcinoma of right tonsillar fossa with base of tongue came with the complaints of pain and difficulty in swallowing. He was on treatment of Ayurvedic medicine, but not relieved. Then slowly the patient started having wound around the neck and wound management started for him. Now he is under palliative medicine. There was a patient and caregiver collusion and after a successful psychological counselling the collusion was ultimately broken and bad news was broken to the patient. After initial stress, patient ultimately accepted the reality. The patient was managed according to guidelines: managing physical symptoms like pain, difficulty in swallowing, wound etc. we have successfully shifted the patient from alternative medication to allopathic medication. We did ‘breaking bad news’ for the patient and he slowly accepted his condition. We have helped the patient by showing the path for financial outcomes like Atal Amrit Abhiyan, Ayushman Bharat.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 84: ASSESSMENT OF SYMPTOM BURDEN IN PATIENTS OF MALIGNANT BOWEL OBSTRUCTION IN A TERTIARY CARE CENTRE IN INDIA

Bikash Anand ¹, Sushma Bhatnagar ¹, Seema Mishra ¹, Nishkarsh Gupta ¹, Sachidanand Jee Bharti ¹, Rakesh Garg ¹, Vinod Kumar ¹

Background: We have various medical and surgical managements regarding Malignant Bowel Obstruction (MBO), but the studies assessing Quality of Life (QOL) and Symptom burden in such patients is limited. The data regarding the QOL and symptom burden in such patients with advanced malignancy may help us in improving the treatment strategies. In this study, we will try to analyze the symptom burden and QOL in patients age >18 years.

Objective: To access symptom burden and QOL in patients of MBO admitted in PCU tertiary cancer center in India.

Methods: Patients presented to the PCU, were included in the study based on inclusion and exclusion criteria. The patients’ demographic profile, disease and treatment status was recorded. Functional status of patients will be assessed using ECOG performance status score and the symptom burden will be assessed by using Memorial symptom assessment scale.

Results: A total of 5 patients were assessed for the symptoms. Symptom of severe pain was present in 100% of the patients along with constipation, vomiting loss of appetite, lack of energy, dry mouth. In psychological symptoms, nervousness, worrying, difficulty sleeping and feeling sad were common.

Conclusion: It was seen that MBO patients have wide range of symptoms, both physical and psychological. Thus, there is need of palliative management of these patients from early onset in the disease for better quality of life.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 85: COPE-COMPREHENSIVE OUT-PATIENT EVALUATION: STANFORD PAICE PROJECT

Arati Hota ¹, Anjum Khan Joad ¹, Pratima Agarwal ¹, Kinjal Patel ¹, Sumitra Choudhry ¹, Hari Narayan Gurjar ¹, Kulprit Kaur ¹, Jake Michelsen ¹

Introduction and Objectives: Our out-patient assessment has lacunae in physical/psychological and social domains. Documentation is sometimes incomplete. This can lead to suboptimal care, especially after hours. This can also lead to blind spots- social issues, psychological, Spiritual issues.

Methods: We defined comprehensive assessment of outpatients as the documentation of NCCN distress thermometer (DT), nursing assessment, social assessment, ESAS, PPS, history and examination and consent forms (7 forms). Our goal was to increase this from a baseline of 20 % to 75 % patients by June 2019.

Through the two- by- two, Fishbone assessment we were able focus team efforts on the common causes and effects. DT and Social assessment were being missed more frequently. Data was recorded over 5 months. Monthly audit, run charts, Why, Waste walk and Pareto diagrams refined our work.

In our 3^rd audit more than 90 percent assessments were complete. But this couldn't be sustained in the next audits. The reliability of our interventions was a question mark. By Skill sharing, Fortnightly auditing, creating a smaller, simpler practical form (Form 4S-Soma, pSyche, Social Spiritual), checklist, we were able to achieve 57 % completion by the deadline.

Conclusion: Care of the patient after hours, interventions for social issues and psychological support have also improved. Spiritual issues are still inadequately addressed.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 86: PAIN PROFILE OF PATIENTS ATTENDING COMMUNITY PAIN CAMP IN RURAL PUNE DISTRICT, MAHARASHTRA

Prasad Rane ¹, Kranti Rayamane ¹, Sarita Swami ², Rajesh Jainjangade ¹

Introduction: According to our baseline survey's result, 45% people are suffering from pain. Incidental to this action, there has been plan to reduce the pain in the community and decided to conduct pain and counseling camp by Pain specialist in the rural hospitals.

Aim: To explore approached decentralized community pain clinic in primary health care setting.

Method: Two Community Pain Camps were organized in Rural Hospital, Bhor and Primary Health Centre, Parinche, Purander block, Pune in April/May 2019. Patients from community were identified in advance those had moderate to severe chronic pain for 3 months through ASHA workers. Patients were examined by pain specialist from Bharti Vidyapeeth Medical College, Pune. Total 165 patients attended the camp. WHO pain scale has been used to identify patients.

Results: 54 Males and 111 Females attended camps with an age averaged 54±17. Majority of patients were suffering from Knee, Cervical and Lower back pain, 64%, 29% and 20% respectively. 54 patients required referral and were referred to tertiary care hospital for further intervention.

Conclusion: Considerable number of patients suffer from pain with no access to modern management of pain management. Access to pain management needs to be enhanced through arranging camps in the community. Pain diagnosis by WHO scale should be used by the Medical officers to identify severity of pain and referral as necessary. ASHA can be effective to identify cases requiring pain. ASHA can play an important role in identifying cases of pain and palliative care.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 88: CO-PRESCRIPTION OF LAXATIVES IN ADULT PATIENTS RECEIVING ORAL MORPHINE TABLETS FOR THE TREATMENT OF CANCER RELATED PAIN IN A TERTIARY LEVEL CANCER HOSPITAL - A PRESCRIPTION AUDIT

VV Meenakshi ¹

Introduction and Objective: Opioid induced constipation (OIC) is a recognized entity, yet physicians frequently ignore it or treat it inadequately. The aim of this study is to audit oral morphine prescriptions in a tertiary care hospital for co-prescription of laxatives in adult cancer patients.

Methods: This study is a prescription audit conducted in a regional cancer centre targeting physicians prescribing oral morphine, to examine co-prescription of laxative with the opioid. 644 morphine prescriptions were retrospectively examined for co-prescription of laxative. Patients were divided into in-patient (IP) and out-patient (OP), physicians were divided into those who had basic palliative care knowledge and those who did not. This was followed by an educational session highlighting opioid prescribing practices. Thereafter a re-audit of 696 morphine prescriptions from among the same physicians were analysed to detect a change in practice. Data was analysed with SPSS software.

Results: In-patients were excluded from the analysis due to confounding factors. In the 1^st phase of the audit 225 out of 548 out-patients (41.05%) had not been co-prescribed a laxative along with oral morphine. Following the intervention however only 137 out of 593 out-patients (23.10%) hadn't received a laxative prescription. Physicians with basic PC knowledge performed better with 92.5% co-prescribing laxatives whereas in morphine prescriptions prescribed by other physicians only 36.9% contained a laxative. This improved to 58.1% (p value=0.001) after the educative session.

Conclusions: Review of data and the educational initiative was effective in bringing a change among the physicians in prescribing laxatives alongside oral morphine.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 89: QUALITATIVE STUDY TO EVALUATE THE PSYCHOLOGICAL SYMPTOMS OF POST FLOOD SURVIVORS IN A STATE IN SOUTH INDIA

Athul J Manuel ¹, Sunitha M Daniel ¹, Mhoira EF Leng ¹, Chitra Venkateswaran ²

Background: Palliative care (PC) in humanitarian settings is a crucial but little explored issue. WHO and SPHERE guidelines support integration and call for situational analysis. Kerala experienced severe flooding and a humanitarian emergency in 2018 was significantly supported by local PC services.

Aim: To explore the experience of psychological distress among flood survivors one year after the incident.

Methods: In-depth interviews were conducted in Malayalam with 15 PC patients & their families affected by devastating floods in the previous year. Two-stage cluster sampling was used to select 5 patients from 3 different panchayats or districts. A Focus group discussion was also done among PC staff who worked with flood victims. Interviews were verbatim transcribed, translated into English and back translated to Malayalam to ensure that the meaning has not been lost. English data were analyzed using thematic analysis and synthesized to provide a deeper understanding of the individuals’ experience.

Results: Three major themes emerged from the data. 1) Psychological symptoms faced by the survivors which: anxiety, anger and depression in response to the natural calamity and its impact on livelihood. 2) Impact of the support system: There was a strong feeling of unity among the people and they were supported by family, friends, community and various NGOs. However, few who did not get enough support felt left out.3) Moving on with life. Families tried to make sense of their situation, made practical adaptations and preparations to face calamities in future.

Conclusion: Psychological concerns are common among survivors of disasters emphasizing the need for integrated PC in humanitarian responses. Family and community provide support needed to overcome the crisis, the lack of which can lead to increased distress.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 91: SYSTEMATIC LITERATURE REVIEW ON THE PSYCHOLOGICAL CONCERNS OF INDIAN WOMEN UNDERGOING BREAST CANCER TREATMENT

Citra Venkateswaran ¹, Sunitha Daniel ¹, Sam Gnanapragasam ¹, Joseph Clark ¹, Miriam J Johnson ²

Background and Objectives: Psychological symptoms are common in women diagnosed with breast cancer. The cancer care experiences of women varies across diverse cultural backgrounds. Given that breast cancer is becoming the most common cancer among women in India, recognition of psychological distress during treatment is important to enable the physician to offer support that is culturally sensitive. The aim of the study is to determine the psychological concerns of Indian women in relation to breast cancer treatment.

Methods: Medline, Embase, CINAHL and PsychInfo were searched (to February 2017) using terms relating to Indian women with breast cancer and psychological concerns. The EBSCO host discovery science was searched for papers from Indian journals inaccessible from other databases. Two reviewers were involved in all stages of study selection against inclusion criteria. Discrepancy was finalized after discussion with a third researcher. Included papers were appraised for their quality and data extracted using a standard proforma.

Results: Out of 550 titles, 17 studies met the inclusion criteria. 13 were observational and 4 were qualitative studies. The observational studies found five psychological outcomes related to breast cancer and its treatment: anxiety/depression, quality of life, concerns and coping, body image and stigma and information needs. Thematic synthesis of qualitative papers revealed 4 major themes; cultural context of disease experiences, information seeking, role of women and women's individual response to disease. Overall, a major cultural impact of Indian family life and role of women, role of religion, and a particular impact of hair loss for these women within these contexts was seen in women living in India and elsewhere in the world.

Conclusion: This literature review highlights the cultural impact on the experience of Indian women with breast cancer living in India and around the world; culture travels. This is important for clinicians looking after patients from diverse cultural backgrounds.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 92: A CASE OF INADEQUATELY MANAGED PAIN: HOW WE EVALUATED

Kabita Rajwowar ¹, Gayatri Gogoi ¹, Rashmi Ahmed ¹, Deepsikha Thengal ¹, Tripti Lodh ¹, Dimpee Keot ¹, Sangita Kurmi ¹, Dipika Dutta Bordoloi ¹, Mousumi Gogoi ¹

Case Report: Pain management is a critical component of Palliative Care. This case report is about a case of inadequately managed pain which led to intense physical and psychosocial suffering of the patient and his caregivers. A case of multiple myeloma, the patient at the time of admission under our care, was in advance stage and presented with generalized weakness, anorexia, cachexia, pain, oral infection and 1^st degree bed sore. During assessment we realized that the patient short tempered and remains very irritated. That was due to his pain and nature his family members who were unable to take proper care. The patient was prescribed with oral morphine from a tertiary care hospital but he couldn't follow the treatment regimen properly due to lack of proper counseling regarding morphine use; he took morphine only when he had pain. Besides pain management, bed sore dressing, oral care, providing air mattress etc. was done on regular basis. Proper counseling of the family member regarding care of the patient as well as the necessity of maintaining morphine dose for management of pain was done. We along with his family members tried our level best to reduce his pain and suffering and give him a pain free death at home surrounded by his family members. Our presence encouraged the care givers to take proper care of the patient.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 93: INITIATION OF BEREAVEMENT SERVICE IN ACCF PALLIATIVE CARE UNIT, JORHAT MEDICAL COLLEGE AND HOSPITAL AND ITS LACUNAE

Pooja Saikia ¹

Background: Bereavement care is a core element of palliative care. It encompasses care for the patient after death and care for their family and friends. In Jorhat the word bereavement is new to the medical fraternity. We as a palliative team started the bereavement program for the very first time in Jorhat. People do not accept bereavement and they think that it is of no use.

Objectives: Talking about bereavement among the family members and caregivers of the deceased patients.

Methods: Identification of the patient for whose family bereavement care may be required; Psychological counselling in a well-organized setting with cool and calm environment; planning bereavement visits to families & friends of the deceased and arrangement of the same at our center; setting up a ‘Remembrance tree'. In this endeavor, we faced several problems: People generally think “why to go for such meetings and what to do there after losing the patient”; reluctance and fear to recall their loved ones; financial issues.

Results: Before bereavement meeting, attendants were not expecting any care from us and were depressed and sad due to loss of their loved ones. After attending the bereavement, the acceptance of losing the patient was seen and they ventilated their emotions saying that they were feeling better.

Conclusions: Bereavement is an integral part of palliative care and we have succeeded it in initiating and continuing it at Jorhat PCU.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 94: PREVALENCE AND PATTERNS OF SLEEP DISTURBANCES DURING PREGNANCY AMONG HEALTHY NULLIPAROUS WOMEN

Shikhamani Nath ¹

Background: Pregnant women experience frequent night waking; insomnia throughout pregnancy, including difficulty falling asleep and staying asleep; and restless sleep by the end of pregnancy.

Objective: To estimate the prevalence and patterns of sleep disturbances during pregnancy among healthy nulliparous women.

Methods: This was a prospective randomized control study of healthy nulliparous women, recruited between 13 and 40 weeks of gestation period, who completed a baseline sleep survey at enrollment with follow-up in the second trimester. The study was composed of the following validated sleep questionnaires: Fatigue scales, Pittsburg sleep Quality Index, DLST, Frequency Symptoms question set, Socio demo data respectively.

Results: A large percentage of the women experienced sleep disturbances during pregnancy; these problems included frequent night waking, difficulty falling asleep, and symptoms of sleep apnea. Few differences in sleep patterns were found across pregnancy, although women were found to sleep more and nap more by the end of pregnancy.

Conclusion: Sleep disturbances are prevalent among healthy nulliparous women and increase significantly during pregnancy.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 95: ROLE OF PHYSIOTHERAPY IN POSTOPERATIVE CARE OF BREAST CANCER

Arshya Anwar ¹, Begum Affrin Zaman ¹, Ankita Priyam Dutta ¹, Neha Charoh ¹, Snehashree Neog ¹, Tasneem Rahman Hazarika ¹

Introduction: Breast cancer is a common cancer amongst women, and has the highest survival rate. Post-operative breast cancer patients are commonly referred to physiotherapy for treatment of reduced shoulder complex function, pain, reduced shoulder strength and lymphedema.

Objective: To systematically review the effectiveness of various post-operative physiotherapy interventions on impaired range of motion, pain and lymphedema of breast cancer patients. The aim of the study is to provide qualitative information about which techniques are utilized by physiotherapist in the management of post-operative breast cancer patients.

Methods: A systemic review of randomized control trials and non-randomized experimental trials investigating the effectiveness of various post-operative physiotherapy interventions for breast cancer are reviewed. Common treatment interventions are listed on a survey and their frequency of use along with their effectiveness were analyzed. First the titles were analyzed, and then the abstracts were selected and finally the full text were reviewed.

Results: A total of 40 studies were used for analysis. Of 40 studies, in 35 articles laser therapy was mostly used and proved to be highly effective for management of lymphedema; in 30 articles, shoulder stretches were found to be most effective in increasing the range of motion; in 25 articles, soft tissues technique was found to be widely used in relieving pain.

Conclusion: Based on our systemic review, the most common effective physiotherapeutic care for managing post-operative complications of breast cancer patients are multifactorial physical therapy (shoulder stretches, exercises), laser therapy and soft tissue techniques.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 96: EFFECTIVENESS OF MAITLAND MOBILISATION ON TRISMUS

Epshita Kakati ¹, Prasenjit Bhattacharya ¹, Eepsita Mahanta ¹, Nibedita Das ¹, Nikita Das ¹, Sadeka Barman ¹

Introduction: Trismus is restriction of jaw opening caused by trauma, surgery or radiation. This often leads to severe complications of nutrition, oral hygiene, speech difficulty, mastication and even aspiration. Conventional physiotherapy treatment has had limited success in treating cases of trismus. Maitland Mobilization is a form of Manual Therapy which can be expressed as a low velocity and small/large amplitude movement applied anywhere within a joint range of motion. It is painless, non- invasive and has no side effects when performed by a trained person.

Objective: To conduct a systemic review of the existing literature on the effect of Maitland Mobilization on TMJ disorders and trismus.

Methods: A detailed study over the internet was conducted by using the keywords of Maitland Mobilisation, trismus, Tempero Mandibular joint and Physiotherapy. 5 case reports/ case studies were found.

Results: Our search found only five papers regarding the topic in concern: Sucheta Golhar et al. (2017), Guha 2019, Lewis Naude 2010, Renu Pattanshetty et al. (2017), and Anjana Laungani (2017).

Conclusion: There is a dearth of studies in using this form of treatment and further research needs to be undertaken to prove the efficacy of this branch of manual therapy. The researches we have studied have shown that Maitland Moblisation can be used as a treatment option of trismus as it is a relatively cost effective, painless, non-invasive and holistic approach to pain reduction and increase in mandibular motion.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 97: EFFECT OF PALLIATIVE INTERVENTIONS ON PSYCHOLOGICAL WELL-BEING OF CANCER PATIENTS

Sanjeev Kumar ¹

Introduction and Objectives: Terminally ill patients suffer horizon of physical, psychological, social and spiritual issues. Psychological well-being of such patients is considered to be an important aspect of their care plan. This study aims to understand change in psychological well-being by assessing patient's psychological status pre and post-palliative intervention.

Methods: Adult cancer patients of 18+ age group admitted to PCU, AIIMS, New Delhi. Of 108 patients, 13 patients did not come for follow-up. 95 patients underwent psychological assessment pre and post-palliative care. Instrument used to asses these patients is DASS-21, a subjective assessment scale.

Results: Pre-palliative intervention patients presented with 3% extremely severe, 19% severe, 54% moderate, 13% mild and 11% normal level of depression. While assessing anxiety: 26% extremely severe, 48% severe, 20% moderate, 2% mild and 2% normal anxiety level. Assessing stress: 42% extremely severe stress, 30% severe, 14% moderate, 8% mild and 6% normal stress levels. Post-palliative intervention patients presented with 2% extremely severe depression, 4% severe, 8% moderate, 6% mild and 80% normal level of depression. On scale of anxiety: 6% extremely severe anxiety, 12% severe, 4% moderate, 4% mild and 74% normal level of anxiety. On stress scale: 4% extremely severe, 6% severe, 7% moderate, 3% mild, and 80% normal level of stress.

Conclusion: Palliative intervention improves depression, anxiety and stress levels in terminal cancer patients thus improving psychological well-being. Integration of palliative care from the beginning of disease trajectory can substantially improve the overall quality of life in cancer patients.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 98: PALLIATIVE CARE EDUCATION: ROLE OF CANCER AID SOCIETY

Devendra Shukla ¹

Introduction and Objective: World is a constant change, to keep up with current knowledge is therefore not an easy task. This same applies to palliative care. Palliative care education is a necessity for the society. In India palliative care is present since mid-1980s but still has limited coverage. Lack of interest to gain knowledge is one major obstacle besides poverty, population density and others. Objective of palliative care education is to create more and more awareness amongst people in the society. An anticipation is that the near future, due to increase in life expectancy, enormous number of people will be in need of palliative care. In order to provide all of them good quality of life, everyone have to come and help to provide palliative care.

Methods: Learning palliative care throughout life for everybody with following steps: Public knowledge approach; Chain of palliative care; Six-step education approach of palliative care, Integration in school curriculum, Basic course for all health care professionals & providers, Basic teaching for the public.

Conclusion: In the future, the need of palliative care in community will increase. Education about palliative care will only be possible by taking initiative with all possible combined approach. There should be trained social workers, doctors, and volunteers who can educate people amongst society as there is need of more awareness. By approaching institution like schools, colleges and others we could educate children which could possibly educate coming generations.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 99: ORAL HEALTH IN THE ELDERLY

Kaberi Kakaty Das ¹, Kabindra Bhagabati ¹

Introduction and Objectives: Maintaining oral health along with general health is very difficult and different in old age. Dental care plays an important and pivotal role in a multi-disciplinary approach to providing care to the elderly. Oral care reduces the risk for pain and infections improving quality of life. The aim of this paper is to give a brief overview of how palliative care dentist can help the team and an elderly patient.

Methods: Elderly patients, both ambulatory and non-ambulatory, terminally ill, above age 65 years, are considered in this study. Patients with metabolic disease are excluded. After taking consent, oral health evaluations were done by following Kenneth Shay's Geriatric assessment scale (OSCAR).

Results: The most common local traumatic factors are fractured tooth or restoration, ill-fitting denture, poor oral hygiene. Other common complications are hypersensitivity, mucositis, candidiasis, malnutrition, dehydration, etc.

Conclusion: Awareness and importance of maintaining the oral health is one of the major blocks in oral health of the elderly. With increased prevalence of caries, periodontal disease and tooth loss, there is difficulty in mastication, impairment of the oral health leading to poor quality of life.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 100: EFFECTIVENESS OF HOME CARE SERVICE IN PATIENTS REFERRED TO A PALLIATIVE CARE UNIT

Hasina Parwin Sultana Saikia ¹, Kabindra Bhagabati ¹, Gayatri Tamuli ¹

Introduction and Objective: Home care is an important part of palliative care. Those who want to be cared for at home, have the right to use support to receive appropriate homecare at end-of-life. Palliative home care has a potential to improve the appropriateness of care and reduce expenses for the patient also. Our study is based on patients referred to the palliative care unit of a comprehensive cancer centre of Northeast India. The study aims to find the effectiveness of homecare service.

Methods: Our institute runs a home care service in and around 30 kms radius. Homecare patients who have been visited more than 3-4 times have been included in the study. A one-to-one interview with patients and their relatives were taken and recorded. Those patients who were unable to go through the interview were provided questionnaires and they were helped by the family members.

Results: Participants of the study belonged to the age group of 15-75 years. Male: female is 30% to 70%. 99% patients wanted homecare service and only 1% refused for such service. Majority found it helpful as it provided access to total care easier and available at their doorstep, along with free medicines. Only 1% found it to be less useful, as financial assistance was the primary concern for them.

Conclusion: It has been found that the need of home based palliative care has been felt with great importance and recognition in the community.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 101: WHY NO TO HOME CARE SERVICE? AN INTROSPECTIVE STUDY OF OUR PATIENTS

Gayatri Tamuli ¹, Kabindra Bhagabati ¹, Hasina Parwin Sultana Saikia ¹

Introduction: Home Care Service is an integral part of Palliative Care treatment. Patients in need for palliative care are the ones who encounter several problems with mobility. A particular section of patients seems to be reluctant and skeptical about opting home care. This study attempts to explore factors that affect the patients’ reluctance to accept home care service.

Method: A sample of 300 patients was selected from home care service provided by Dr B Borooah Cancer Institute in Guwahati. Every patient undergoing palliative care is usually taken for home care. During the 1st consultation in OPD, they are given the option and told about benefits.

Results: 99% patients accepted home care. The factors that affect the reluctance for opting the services were found to be: Don't want to disclose the diagnosis to the neighbors; worrying about the financial burden from home care service; feels that the patient is stable; as the patient is getting curative therapy; ashamed of showing their residence/financial status.

Conclusion: Despite all the benefits, 1percent of patient still refuse to have home care service for various reasons. Decisions of patients and family members must be respected regardless of various valid reasons. It is necessary to have discussions with the family members to pursue them for home care service.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 105: ERDHEIM-CHESTER DISEASE: A RARE CASE REPORT IN PALLIATIVE CARE

Shreya Nair ¹

Introduction: Erdheim-Chester disease (ECD) is an extremely rare and aggressive form of non-Langerhans cell histiocytosis. ECD usually presents with bone pain in adults aged 40–60 years. Its etiology is unknown, but it is thought to be either a reactive or neoplastic disorder. Herein, we are reporting a young male patient with an aggressive type of ECD presenting to palliative care clinic. We have highlighted the oncological work up along with integrated palliative care consultation.

Case Report: A 16-year-old male with no relevant past medical history initially presented with chronic diffused back pain. These complaints had been present for the last 4 months with worsening reported in the previous week and developed paraparesis. On being consulted with the hemato-oncology clinic, his routine blood investigations were within normal limits, with normal levels of relevant tumor markers, autoimmune and rheumatologic screening. The inflammatory markers such as C-reactive protein (CRP) and the erythrocyte sedimentation rate (ESR) were mildly elevated. A 99mTc-methylene diphosphonate and 18F-fluorodeoxyglucose positron emission tomography (FDG-PET) scan revealed osteosclerotic and marrow lesion in sacral, femur and iliac bones. A bone marrow biopsy confirmed the diagnosis of ECD. The treatment started with pegylated IFN-α 180 μg/week subcutaneously. Palliative care consultation dealt with management of severe back pain, paraplegia care and with psychosocial aspects in the young adult. The treatment was well tolerated and particularly efficacious for bone pain and constitutional symptoms without adverse effect and the compliance of the patient was excellent.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P – 106: AUDIT OF HOMECARE SERVICES – TIME OF INITIAL ASSESSMENT OF PSYCHOLOGICAL DISTRESS USING DISTRESS THERMOMETER

Anita Harish ¹

Introduction: Clinical audit is performed to improve patient care and outcomes through review of care against set standards and implementation of change. This Audit was conducted to observe after how many visits, home care teams assess Pscycological distress by filling DT, whether the set standard was being followed – 90% of new patients should be assessed for psychological distress, within first three visits.

Methods: Initial audit done in December 2018. Data from November 2018 collected from all 14 teams. Noted patients where initial assessment of psychological distress was not done within set standard. Result of the first audit was prepared in January 2019. Comparison with standard was done. Based on analysis of initial audit cycle, reasons for delays in services and steps for improvement were discussed and analyzed. Relevant suggestions were implemented. Period of intervention was between February 2019 to March 2019. Re-audit done in May 2019. Data of April 2019 was collected, analyzed in May 2019 to see improvement in service.

Results: In December 2018, 65.7% of new patients were assessed in the 1^st 3 visits; this is 24.3% away from set standard of 90%. In May 2019, in 88% of patients were assessed; this is only 2% away from the standard of 90%. This was possible after doing repeated discussions with home care staff, taking their opinion for improvement & implementing the favourable changes.

Conclusions: Clinical audits can lead to improvement in services of organization. We are hoping for further improvement in future by repeated efforts.

Indian J Palliat Care. 2020 Apr-Jun;26(2):237–268.

P-107: EMPOWERING THE FAMILY MEMBERS WHO OSTRACIZE THE PATIENTS THROUGH HOME BASED COUNSELING TO IMPROVE FAMILY SUPPORT

Poornima Prakash ¹

Introduction and Objective: Support from the family helps an individual feel secure and comfortable. But when the family isolates the individual it is very hard to cope with any situation. The aim of this study is to empower the family members, who ostracize the patients, through counseling, in order to help them provide better care and support to lessen the patient's isolation.

Methods: Observational study was done using examples from a review of recent case-note records of in-depth counseling sessions and interventions. Examples will be presented to illustrate some of these issues to emphasize the need to give families some time and space to voice out, to deal with these issues and to help them get over their fears in order to provide care and support to the patient and lessen their sense of isolation.

Results: It was observed that families have isolated the patient due: 1) Fear of contracting the disease; 2) Unable to take care (No knowledge about the illness, handling symptoms, financial crisis, treatment concerns, future commitments). It was observed that due to isolation from family members patients went through loneliness, helplessness, fear of suffering, negative thoughts, anger towards the family member, burden on family, anxiety and depression. Many of these were related to poor knowledge and ignorance. For example, the belief that cancer is contagious.

Conclusion: Home based counseling can improve the outlook of caregivers towards isolation of patients and it was observed that there was better care which was provided and family support was improved.

PERMALINK

Poster Presentations

P – 01: A MODEL TO PROVIDE SUPPORTIVE AND CARE CONTINUITY FOR PALLIATIVE CARE PATIENTS AT HOME

Mahesh Krishna

Sridhar Pillalamarri

Sundararajan Srinivasan

Amelia Michael

Raghavendra Ramanjulu

P – 02: ETHICAL DILEMMAS OF A PALLIATIVE CARE NURSE IN AN NGO SETTING

Subhadra

P – 03: TEACHING COMPASSION AND PALLIATIVE CARE PRINCIPLES THROUGH MEDICAL HUMANITIES IN NEPAL. STUDENTS’ PERCEPTIONS OF A NEW COURSE

Amanda Helen Douglas

Madhusudan Subedi

Rajesh Gongal

P – 04: VOLUNTEERING AND PALLIATIVE CARE ARE TANGLED

Preetha Mahesh

P – 05: ULTRASOUND-GUIDED SERRATUS ANTERIOR PLANE BLOCK FOR POSTOPERATIVE ANALGESIA IN THORACOTOMY SURGERY: A CASE SERIES

Ananya Bhorali

Mridupaban Nath

P – 06: FOREVER ETCHED: EXPERIENCES OF PRIMARY CAREGIVERS IN HOME-BASED PALLIATIVE CARE

Aneka Paul

P – 07: PALLIATIVE CARE FOR A BREAST CANCER PATIENT: A CASE HISTORY

Ayush Garg

P – 08: “UNARV” A PALLIUM INDIA INITIATIVE FOR THE BEREAVED

M Indira

P – 09: MANAGEMENT OF PAIN WITHOUT MEDICATIONS

Cheekati Anusha

P – 10: ANTIBIOTIC SNAPSHOT: A RETROSPECTIVE ANALYSIS OF ANTIBIOTIC PRESCRIBING HABITS AMONG INDIAN PALLIATIVE CARE Physicians

David Thomas

Mary B Carter

Amritha Thampi

Navjot Vidwan

P – 11: COMPARATIVE STUDY OF PSYCHOLOGICAL PAIN (DEPRESSION) BETWEEN MALE AND FEMALE CANCER PATIENTS AT STATE CANCER INSTITUTE GUWAHATI

Pranami Sarmah

Pompi Roy

Dipankar Dakua1

P – 12: ROLE OF ULTRASOUND IN CHRONIC PAIN MANAGEMENT – A REVIEW

Gyanshree Khaund

Trina Sen

P – 13: PREFERENCES FOR COMMUNICATION AND CONCERNS OF CAREGIVERS OF ADULT PATIENTS WITH ACUTE LEUKEMIAS REFERRED TO A SPECIALIZED PALLIATIVE CARE UNIT

Jyothsna Kuriakose

Jayita Deodhar

Arunangshu Ghoshal

Anuja Damani

P – 14: REASONS FOR ADVANCED STAGES OF PRESENTATION OF CANCER PATIENTS IN UTTARAKHAND REGION: HOSPITAL BASED STUDY

K Kusum

C Vasantha Kalyani1

Sweety Gupta

P – 15: WHO IS FAMILY?

LV Usha Rani

V Vishwanath

P – 17: ENGAGING TERMINALLY ILL PATIENTS WITH Bu IMAGE ISSUES IN ACTIVITIES TO EMPOWER PATIENTS WITH Au CANCER

K Parvathamma

P – 18: ENHANCING QUALITY AND QUANTITY OF LIFE – 13 YEARS SURVIVAL WITH RECURRENT STROMAL SARCOMA

Dani Swarna Mathew

Reena Mary George

Thotampoori Shanthi Prasoona

P – 19: IMPACT OF TRAINING OF ASHA WORKERS ON SHS IN PUNE DISTRICT, MAHARASHTRA

Prasad Rane

Kranti Rayamane

Rajesh Jainjangade

P – 20: END-OF-LIFE COMMUNICATION AND DECISION MAKING BEFORE HOMECARE TRANSITION

Priyadarshini Chandra Deo

Mahesh Menon

P – 21: ANALGESIC RESPONSE TO INTRAVENOUS MORPHINE INFUSIONS IN OPIOID NAïVE PATIENTS MANAGED FOR SEVERE MALIGNANT AND NONMALIGNANT PAINS

Geraldine Monteiro

Renuka Pai

Sangeeta Das

Subhash D Tarey

Table 1.

Figure 1.

P – 22: LIFESTYLE AND SELF-MANAGEMENT AMONG GOOD AND POOR GLYCEMIC CONTROL PATIENT WITH DIABETES ATTENDING DIABETIC CLINIC OF BPKIHS

Ram Mehta

Anita Upreti

Pushpa Parajuli

Rabin Maskey

P – 23: BUILDING UP A WORKFORCE IN VOLUNTEERING

Ramaswamy Natampally

P – 24: TINY HOMES, TERRIBLE SYMPTOMS: THE SOCIAL SITUATION OF PATIENTS WITH RECTO–VAGINAL FISTULA DUE TO CERVICAL CANCER

Ramu Kandasamy