Abstract
Background:
Home-based specialist palliative care services are developed to meet the needs of the patients in advanced stage of cancer at home with physical symptoms and distress. 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.
Materials and Methods:
Total 690 new cases registered under home-based palliative care service in the year 2012 were prospectively studied to assess the impact of specialist home-based services using Edmonton symptom assessment scale (ESAS) and other parameters.
Results:
Out of the 690 registered cases, 506 patients received home-based palliative care. 50.98% patients were cared for at home, 28.85% patients needed hospice referral and 20.15% patients needed brief period of hospitalization. All patients receiving specialist home care had good relief of physical symptoms (P < 0.005). 83.2% patients received out of hours care (OOH) through liaising with local general practitioners; 42.68% received home based bereavement care and 91.66% had good bereavement outcomes.
Conclusion:
Specialist home-based palliative care improved symptom control, health-related communication and psychosocial support. It promoted increased number of home-based death, appropriate and early hospice referral, and averted needless hospitalization. It improved bereavement outcomes, and caregiver satisfaction.
Keywords: Bereavement care, out of hours care, physical symptoms, specialist home-based palliative care
INTRODUCTION
The goal of palliative care is ‘to prevent and relieve suffering and to provide the best possible quality of life (QOL) to patients and their families, regardless of the stage of illness trajectory.’[1] The home-based specialist palliative care services have been developed to meet the needs of the patients in advanced stage of cancer at home with physical symptoms and distress.[2] There is evidence to demonstrate that home, hospital and in-patient specialist palliative care services significantly improved patient outcomes in the domains of pain, symptom control and anxiety, and reduced needless hospital admissions. Hence, it should be offered to all patients with life-threatening illnesses, early in the course of the disease.[3,4] Home care nursing-based palliative programs are also effective in reducing patient pain and symptom experience; thus improving patient's QOL and decreasing family burden.[5]
Providing out of hours (OOH) care is considered as a best practice model in palliative care; however, there is little data documenting the process and outcomes. The level of OOH service delivery is quite variable, can range from responding to a call, providing a home visit, giving telephone support, and/or routine OOH home visits.[6]
One of the important outcomes in care of advanced stage cancer patients is dying at their preferred place. Worldwide, majority of the patients preferred to die at home.[7,8] Through specialized palliative home care services, the patients had good symptom control and improved QOL, which enabled them to stay at home.[9,10] At the Tata Memorial Centre, 70% of the patients presented in an advanced stage of the illness, and are in need of palliative care, during and after the curative treatment.[11]
Services at the Department of Palliative Medicine, Tata Memorial Hospital, include a multidisciplinary home care team providing home visits since 1999. It caters to over 700 patients annually, from Mumbai and suburbs with a population of 20.5 million. In addition to control of physical symptoms, the team concentrates on psycho-social, emotional care, along with the provision of bereavement support.
Aim of the study
To study the impact of specialist home-based palliative care services on (a) Symptom control (b) psychosocial support (c) health-related communication (d) home-based death (e) bereavement outcomes and (e) caregiver satisfaction.
MATERIALS AND METHODS
Inclusion criteria: All the patients from Mumbai within the home care territory (in 35 km radius from TMH), registered in Department of Palliative Medicine in the year 2012, and consenting for home-based palliative care, were recruited into the study.
Exclusion criteria: Age less than 18 years, ECOG1 >3 were the exclusion criteria.
Intervention
At home, patients and their families were assessed holistically. Physical symptoms in patients were assessed using the ESAS (Edmonton symptom assessment scale) score. Most of these patients were initially assessed using the same scale in palliative medicine OPD. Family collusion and stage of grief was reassessed at the first home visit. Socio-economic status and distress were assessed by the social workers along with the rest of the team members. The symptoms were assessed using ESAS scale, and compared between visit-1 to visit-2 at home [See Table 1]. The Wilcoxon signed ranks test and non-parametric statistical hypothesis test are used to compare the two related samples.
Table 1.
Comparison of edmonton symptom assessment scale scores between first and second home visit
Based on symptoms and score on ESAS scales, patients were prescribed symptom control measures. Compliance to medication was checked and appropriate measures were taken. The family members/caregivers’ were empowered for patient care e.g. dressing, nasogastric tube feed, tracheostomy care, back care, oral hygiene, etc. Where oral route was not possible, a subcutaneous line was secured and family members were empowered to administer the same at home.
Home care team liaised with the local nurses and local general practitioners (LGPs), to provide OOH care so that the continuity of care is maintained. They were contacted during the home visit personally or via telephone. Few patients had direct access to the railway hospitals or government hospitals close to home. Patients were given a telephonic contact where they or their LGP, could call after hours for telephonic consultation. Home care team also contacted the family at regular intervals.
Psychological support was provided in the form of counseling. This is initiated in the hospital and continued at home, both for the patient and family. Family often asks the doctors to collude and not to divulge information to patient about diagnosis and prognosis. This creates a barrier in care process. Families are counseled about the need for the patient to have information about the illness as it would help the patient to cope with illness better, understand symptomatology and complete unfinished businesses.
Social support is an aspect of good palliative care, and is routinely incorporated in our practice. Patients and families of lower socio-economic strata were helped by free medicines, ration coupons worth Rs 1000 a month, education support, women's empowerment and self-help schemes. Monthly Support Group Meeting was conducted for patients, caregivers and bereaved family members. This provided a forum to vent their feelings and share their experiences. The volunteers and social workers conducting the support group arranged some fun activities and vocational training opportunities in an effort to empower the families.
Frequency of home visits was every 7-10 days. Patients or relatives were also encouraged to visit the OPD as required and some patients were also referred to the hospice.
Provision of palliative home care apart involves logistics of travel and each team on an average travels around 50-80 km per day and spends at least 6-8 hours per day on the run. Each team sees 5-8 patients/week and spends at least 40-60 minutes per patient on initial assessment and 15-20 minutes on a follow-up assessment.
After the death of the patient, the home care team provided bereavement support to all the families registered under the home care program. Anticipatory grief was addressed during the earlier home care visits. All primary caregivers received a telephonic bereavement call to assess their coping. Those identified as high risk, received a bereavement home visit. All caregivers were invited to attend the support group meetings. The aim of bereavement support was to understand whether the family was coping normally with grief and helping them eventually to return to a normal stream of life.
RESULTS
A total of 690 new cases were registered under home-based palliative care service in the year 2012; 506 patients were visited with a total of 1830 home visits for the year 2012.
Physical care
All patients had adequate symptom control following palliative care input. The relief of symptoms was assessed based on sequential changes in the ESAS scale, which was documented during each visit. Changes in the symptom relief scores were statistically significant [See Table 2]. Twenty-nine patients received medical assistive equipment like, water bed, wheel chairs, diapers, bed pans, etc. Total 146 patients needed hospice referral and 102 patients needed brief period of hospitalization. 50.98% patients were cared for at home, 28.85% patients needed hospice referral and 20.15% patients needed brief period of hospitalization.
Table 2.
Education Support provided to children of palliative care patients
3840 telephonic follow-up calls were done to enquire about patient's general condition and symptom management. The perceived benefits were: Continuity of care was maintained, early reporting of symptoms and early management on phone with/without liasioning with LGP, prioritizing the patient for home visit and development of good rapport with the caregivers.
Psychological care
Palliative home care team was successful in involving neighbors in patient care and this has decreased caregiver availability issues to a large extent. The visits have helped family members to get over the fear of contagion of cancer, social stigma and changed their overall attitude toward the patients. In addition to providing adequate physical comfort, the counseling has reduced the apprehension of the family members, to care for their loved ones who are at the end of life phase of illness trajectory. Out of 506 patients, 87 patients and/or caregivers required recounselling at home. Counseling had helped the patients to receive continued psychosocial support at home environment. All families were counseled about avoiding needless hospitalization. Symptoms like anxiety and depression were well controlled. Future care, end of life symptoms and process of dying were discussed with the patients and caregivers, and patients and their families were prepared for the inevitable.
Out of hours
For 421/506 (83.20%) patients, LGPs were recruited for OOH. The perceived benefits were: Continuity of care at home, a sense of support felt by the family to care for the patient at home, timely intervention with LGPs, and more economically viable care. In all, 266 patients were verified and certified to be dead at home by the LGPs. Due to the regular home visits by the home care team and liaison of LGPs, the unnecessary hospitalization was deferred in most of the patients. Only 102 patients required temporary hospital-based supportive care.
Social care
The following social care support was provided for the patients and their families:
Education Support: 41 children (of palliative care patients) were provided financial support to complete their formal education.
Support Group Meeting (SGM): Total 247 people attended the monthly Support Group Meeting. One of the important outcomes was the individuals forming the group among themselves, which helped them to share their experiences, and enabled them to cope better. The sharing sessions helped caregivers to move ahead in life especially for 116 caregivers. In all, 102 patients reported that they felt psychologically better and their fear toward death had been drastically reduced after attending SGM. Seventy-eight patients/caregivers reported that their attitude toward life had changed and they started enjoying family life.
Ration help: Total 248 ration coupons were distributed to needy families, each worth Rs 1000. Total amount toward ration help was Rs 2,48,000.
Free Medicines: Tata Memorial Centre has a policy of free medications for patients below the poverty line. These patients are identified by the social workers, which would facilitate the provision of free medicines. In all, 382 patients received free medicines.
Place of death
Total 466 patients died in 2012. The majority of patients died at home, followed by hospice and hospital [See Table 3].
Table 3.
Place of death
Bereavement support
Total 201 primary caregivers were provided telephonic bereavement support and 15 families were offered bereavement home visits as these families were finding very difficult to cope the loss of their loved ones. Anticipatory grief counseling, by the home care team and trained counselors made the bereavement process easier and enabled the families/caregivers to move on to their routine life [Table 4]. Out of 216 bereaved caregivers studied, 9 were in denial, 198 were in acceptance phase, 11 were angry, 6 were in bargaining phase and none were in depression. The Strength/Coping Mechanisms for the bereaved caregivers were: Belief in God-183, Family and Friends support-57, Positive Attitude-173, Destiny/Fate-167. A Support in the form of monthly ration, education help to their children and women's empowerment helped them to return to a normal life [See Table 4].
Table 4.
Outcomes of anticipatory grief counseling
Total 176 of the 690 patients registered to receive home-based palliative care were never visited. Twenty-four patients moved out of Mumbai to their home town, as their preferred choice of spending their last days and eventual death. Seven patients needed in-patient admission (4 hospitals and 3 hospices) for better symptom control during end of life. Twelve patients were referred in the last week of the year, thus they were not included for analysis for the year 2012. Ten patients preferred to visit the Department on an outpatient basis. Total 29 patients could not be contacted due to insufficient contact information provided and 94 patients died before the first scheduled home visit. Eight patients refused the visits. The reasons for refusal were social stigma, undergoing some alternative medicine treatment or undergoing anti-cancer treatment at a private hospital.
DISCUSSION
When faced with a terminal illness, patients and their relatives prefer to stay at home.[12] In Australia and UK, home-based palliative care is provided by Royal District Nursing Service (RDNS) and McMillan nurses, respectively. A liaison with the community palliative care nursing team provides effective home-based palliative care.[13] The palliative care patients who received community-based domiciliary services required less frequent and shorter hospitalization as compared to the patients not on home care services.[14,15] A significant improvement in the overall QOL of the patients, with home-based palliative care program has been demonstrated.[16]
In India, there is an overwhelming need for home-based palliative care.[17] Three different types of home-based palliative care are seen and one such model is the ‘Network Neighborhood Program’ in Kerala; a community-initiated program, where the need of palliative care is initiated by the community.[18] Another model is ‘NGO-initiated’; here the NGO runs the home-based program with external funding and liaises with the hospitals and medical colleges for technical support. The third model is a ‘hospital-initiated’ home-based program where the home care team is an integral part of the hospital team, supported by an NGO. The context of the present study belongs to the later. In Tata Memorial Centre, 506 patients received home-based palliative care, where all domains i.e. physical, psychological, social, end of life and bereavement care were provided through a multidisciplinary team approach. The other important outcome of our home-based palliative care was deferring needless hospitalization through patient and family counseling, empowering the families, liaising with local general physicians, performing simple palliative procedures, and providing essential medications for symptom control and end of life care.
Though service models are not comparable, in a resource-limited setting like India, the model employed in our practice setting, has resulted in good symptom control, along with improved patient and caregiver satisfaction.[19]
Psychosocial care for the patients and their families is an integral aspect of supportive care in cancer.[20] A family support program helps patients and caregivers in coping, establish open communication channels and helps in reducing conflicts.[21] The Melbourne Family support program focuses on psychosocial burden of the family caregivers by providing ‘one to one’ psycho-educational intervention.[22] A study conducted in Botswana[23] demonstrated that support groups facilitate information-sharing, education and advocacy, and fosters the spirit and feeling of togetherness. The palliative home care team at our institution has 5 social workers, clinical psychologist and volunteers. Based on needs, assessed patients receive counseling and emotional and social support. In the support group meetings, participants were able to share their experiences, difficulties, and problems and motivate each other. Thus the psychosocial support provided by our team, is comparable to standard care.
Home-based palliative care program also facilitates the transition of patients to hospice care as required.[24] One of the important roles of palliative home care team is timely identification of patients needing hospice care. In our study, 146 patients needed hospice admission. The commonly indentified reasons were poor caregiver availability, difficult symptom control at home needing intense palliative care input, poor treatment compliance or limited resources. The home care team facilitated both admission and discharge from hospice. Out of 146 hospice admissions, 111 patients died in the hospice.
Out of 690 patients registered to receive home-based palliative care in 2012, 94 patients were late palliative care referral, with poor general condition and hence died before the visit could take place. This prompted us to initiate a ‘Triage Coding System’ for home-based palliative care such that prioritized patients are seen at the earliest. We also felt that strengthening the existing home care services in the form of an additional team with more personnel and funding would help us cater to the needs as per existing population.
Involving family physicians for caring patients at home, in liaison with the palliative home care team, can be helpful in establishing an ethical care model in terminal cancer patients.[25] OOH is an integral part of our care process; provided in liaison with the LGP. In our study, 421 (83.20%) patients had access to the LGP. Few patients had access to the railway hospitals or government hospitals close by, where OOH was provided. Integrating ‘tele-health’ into routine practice is useful.[26] In our study, OOH care by telephonic consultation was provided via 5 helplines by 3 doctors on rotation, 1 nurse and 1 social worker. The most common reason for telephonic contact is symptom management,[27] which is similar to the findings noted in our study.
Defining a “good death” is very difficult, as it can only be judged by the extent to which individual patient and family priorities are fulfilled or met.[7] A large number of studies from the developed world have proven that home is the preferred place of death for patients, with a life-limiting illness. Total 93.8% of a healthy population in Germany[28] and 70.8% people in Canada,[29] preferred to die at home. Similarly, 75% of hospitalized patients in the US,[30]67% of cancer patients in Italy[31] and 71% of cancer patients in Denmark[32] preferred to die at home. Review of most of the studies has demonstrated that the preferred place of care is home followed by inpatient hospice care.[33] Home death is commonly viewed as a more dignified and comfortable experience than death in hospital,[34] with the people they like could be present.[35] Patients with cancer who die in a hospital or ICU have worse QOL compared with those who die at home, and their bereaved caregivers are at increased risk for developing psychological morbidity.[36]
A large Indian survey conducted by Cipla Institute of Palliative Care, in a healthy population, with more than 3000 respondents showed that home was the preferred place of death in 83% of the respondents (personal communication). In our study, 57.08% died at home and the ratio of home death to hospice to hospital was 6:2:2 for the year 2012. The patients in our study group preferred to stay with their loved ones during the last days at home, in familiar surroundings.
Acceptance of death and the continuance of valued living is the major strength for the caregiver dealing with terminal illness and bereavement.[37] Most families who have experienced a normal grieving process have accepted the loss well and have returned to a normal routine life.[38] Total 198 of the bereaved families who were evaluated and found to be in stage of acceptance in their grief process returned to their normal routine life early. Anticipatory grief counseling, recognizing a high risk bereavement and managing this with the help of counselors/volunteers improved bereavement outcomes. Outcomes of the study also showed that our bereavement care program is consistent with the recommended bereavement care practices and standards around the world.
CONCLUSION
Specialist home-based palliative care improved symptom control, health-related communication and psychosocial support
It promoted increased number of home-based death, appropriate and early hospice referral, and averted needless hospitalization
It improved bereavement outcomes and caregiver satisfaction.
Footnotes
1 Eastern Cooperative Oncology Group
Source of Support: Nil.
Conflict of Interest: None declared.
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