Primary palliative care competency framework for primary care and family physicians in India-Collaborative work by Indian Association of Palliative Care and Academy of Family Physicians of India

Abstract

The discrepancy in the demand for palliative care and distribution of specialist palliative care services will force patients to be eventually cared for by primary care/family physicians in the community. This will necessitate primary care/family physicians to equip themselves with knowledge and skills of primary palliative care. Indian National Health Policy (2017) recommended the creation of continuing education programs as a method to empower primary care/family physicians. With this intention, a taskforce was convened for incorporating primary palliative care into family/primary care practice. The taskforce comprising of National and International faculties from Palliative Care and Family Medicine published a position paper in 2018 and subsequently brainstormed on the competency framework required for empowering primary care/family physicians. The competencies were covered under the following domains: knowledge, skills and attitude, ethical and legal aspects, communication and team work. The competency framework will be presented to the National Board of Examinations recommending to be incorporated in the DNB curriculum for Family Medicine.

Introduction

In the last decade, India has seen a dramatic positive move towards better acceptance of palliative care, with many institutions especially oncology centers having palliative care specialists working collaboratively with specialists from other clinical disciplines. Integrating palliative care into the routine care of patients with life limiting conditions improves quality of life, decreases inappropriate use of invasive medical interventions at the end of life, and facilitates a dignified and a peaceful death.[1,2]

There is sparcity of palliative care specialists to cater to the growing number of individuals with palliative care needs in a vast country like India. Less than 1% of the 1.3 billion population of India has access to specialist palliative care.[3] The Quality of Death Index commissioned by the Lien Foundation (2015) Singapore measured the quality of palliative care in 80 countries, using 20 quantitative and qualitative indicators across five categories: The Palliative and Healthcare environment, human resources, the affordability of care, the quality of care, and the level of community engagement. India ranked at 67^th position out of 80 countries.[4] Palliative care within India is sparsely distributed and concentrated in major cities with the exception of Kerala. Rural and tribal areas have minimal access to palliative care.

India faces an overwhelming need for palliative care, in oncology and other life limiting illness, as it is well established that patients with other life-threatening illness can benefit from palliative care.[5,6] Nearly all will primarily or eventually be cared by the primary care physicians thus necessitating primary care physicians to equip themselves with the knowledge and skills of primary palliative care. Primary palliative care can be defined as “the clinical management and care coordination including assessment, triage, and referral using a palliative approach for patients with uncomplicated needs associated with a life limiting illness and/or end of life care. Has formal links with a specialist palliative care provider for purposes of referral, consultation, and access to specialist care as necessary.”[7] International research has emphasized the importance of the primary care physician being an indispensable element in the continuum of palliative care provision in the community.[8,9] Collaborative care between palliative care specialist and primary care/family physician will ensure a seamless transition to community-based care and helps in continuing care in patient's preferred place.[10] However, there are challenges in the provision of primary palliative care. These include inadequate and uneven distribution of primary care physicians, lack of knowledge and skills in palliative care and obstacles in the process of undertaking training in palliative care, negative attitude of primary care physicians towards palliative care, unclear roles, lack of clearly defined responsibilities, and lack of structured communication and collaboration between them and specialist physicians.[11]

The Indian National Health Policy (NHP) 2017 endorsed that palliative care is an essential component of health care and should be provided alongside preventive, promotive, and curative care.[12] International evidence confirms that palliative care competencies can be successfully incorporated in undergraduate, postgraduate, and practising physician curricula. The NHP 2017 also recommends the creation of continuing education programs for primary care physicians in order to upgrade their skills at providing basic palliative care at the community level. Continued medical education and training programs through distance learning methods like webinar and traditional training using contact programs could be accredited by the local medical council as this can potentially motivate family/primary care physicians to undergo training in palliative care.

There are annual national palliative care courses scheduled round the year in India empowering and training physicians, nursing and allied groups across the country. The content of the existing curricula and the methods of training are variable across training programs and are not immediately transferable into the curricula of family physicians.[13,14,15,16,17,18,19,20,21]

With the intention of establishing consistent training programs appropriate for the primary care setting, a task force comprising National and International Palliative Care Specialists and Family Medicine Physicians was formed in 2017. Members brainstormed to provide recommendations to support the development of palliative care education and service for family/primary care physicians in India.

The present paper is a sequel to the position paper published in 2018[22] and aims to outline the palliative care competencies required for a primary care/family physician to provide primary palliative care in the community. The competency framework will be presented to the National Board of Examination for it to be incorporated into the primary care/family medicine curriculum. It defines the knowledge, skills, attitudes necessary to provide primary palliative care; including identification of those with palliative care needs, holistic assessment, symptom management, provision of end of life care, support of psychosocial, spiritual needs and communication, ethical and legal aspects.

Joint Milestones by the IAPC and AFPI

In January 2017, a taskforce was convened to promote the incorporation of primary palliative care into family/primary care practice in order to improved continued palliative care service in the community. The taskforce comprised 15 national and international members with representations from professional disciplines such as palliative medicine, family medicine, Distance education, geriatric medicine, and public health. In January 2017, members of the task force held a panel discussion on, “The role of Family/Primary Care Physician in Community Based Palliative Care” at the 3^rd National Conference of the Association of Family Medicine and Primary Care. The presenters introduced the concept of palliative care and emphasized the importance of incorporating primary palliative care into the family/primary care practice. Following the presentation, members of the taskforce met with family medicine faculties with a view to establish the requirements of a community-based palliative care in the country and how best this could be implemented in the community.

Subsequently the task force members met during the 24^th International Conference of the Indian Association of Palliative Care (IAPCON), Coimbatore, February 2017 and discussed the way forward for integrating palliative care with family/primary care practice. Following this, in 2018, a Joint position paper by the IAPC and AFPI was published.[22]

The task force drafted the core competencies for primary palliative care. At IAPCON 2019, Kochi, the members presented the competency framework for primary palliative care for family/primary care physicians and this was further vetted in a review meeting in which the various available training curricula in palliative care in India were discussed. The challenges around the feasibility and practicability of training the busy practicing family physicians and incorporation of the curriculum into the postgraduate course of the family physician were addressed. The competency framework will be presented to the National Board of Examinations with a recommendation to be incorporated into the DNB curriculum for family medicine. The members of the task force will work towards developing a module for primary palliative care, taking insights from various national and international training resources for family physicians.

Goals and Core Competencies

The overarching goal in the incorporation of primary palliative care into the training of primary care/family physicians is to ensure that the primary care/family physicians are able to provide primary palliative care within the community using a standard protocol: effective identification of those with palliative care needs, ability to alleviate suffering and improve quality of life, and offer continued care so a person is able to live and die with dignity in their preferred place. The core competencies and the details of the competencies are enlisted in Tables 1 and 2.

Table 1.

Essential core competencies

Understand the principles of palliative care

Understand that there are different trajectories of the decline at the end of life for different illnesses

Be able to identify patients with palliative care needs

Demonstrate knowledge and skills in the use of standard tools available to identify patients with palliative care needs. A range of tools are available such as the Supportive and Palliative Care Indicators Tool (SPICT- www.spict.org.uk)

Understand the principles of palliative care and be able to provide holistic care, to improve Quality of Life (QOL), assure dignified death, through effective team work.

Understand and integrate palliative care in the clinical care of all life-limiting, life- threatening and advanced chronic illness.

Be able to complete a holistic assessment of patient needs and provide appropriate care for the physical, psychological, social and spiritual issues through team work

Demonstrate ability to carry out a comprehensive physical assessment and provide good symptom management

Demonstrate confidence in the use of essential palliative care medications (including opioids)

Initiate and frequently review a plan of care for a terminally ill patient that is based upon a comprehensive interdisciplinary assessment of the patient and family’s expressed values, goals, and needs.

Be able to effectively discuss the plan with the patient and family (including giving information on diagnosis, prognosis, discussing death and dying)

Be able to provide care in the patient’s preferred place (home/community setting)

Be aware of the ethical and legal framework in providing care

Table 2.

A detailed list of the essential knowledge, skills, and attitudes for delivery of primary palliative care

Topic	Essential knowledge and skills
Physical symptom assessment and management	Demonstrate the ability to do a comprehensive assessment of pain and other symptoms including dyspnoea, cough, nausea and vomiting, constipation, diarrhoea, insomnia, oral symptoms, bladder symptoms, anxiety and depression, emergencies (seizures) and end of life care
	Understands the role of pharmacological and nonpharmacological treatment options in the management of symptoms
	Aware of and can rationally choose between different routes of drug administration
	a. Rectal	b. Topical (e.g., creams, gels, patches)
	c. Nasal	d. Subcutaneous
	e. Sublingual	f. Inhaled via nebulizer
	Learn the appropriate use of opioids including initiation, titration, side-effects, management of toxicity
	Confident in providing end of life care including symptom management, rationale use of medications by the appropriate route, judicious use of fluids for hydration, artificial feeding and terminal sedation
Settings of care	Be aware of different settings of care and discuss the same with patient and family, to offer continuity of care in the patient’s desired place
	Emergency setting
	Inpatient care
	Outpatient setting
	Extended-care facility
	Home
	Hospice
	Out of hours care
Psychosocial and spiritual care	Learn to assess and provide psychosocial and spiritual support
	Understand the psychosocial issues and family dynamics affecting the patient
	Understand and respond to the spiritual and religious issues affecting the patient and the family members
	Learn to provide care respecting the cultural beliefs of the patient and the family
	Learn to provide appropriate referral to available psycho-social or spiritual support team members
Communication skills and Breaking Bad News	Demonstrate the ability to facilitate family meeting and communicate compassionately and empathetically with the patient, family regarding difficult information including diagnosis, disease progression, prognosis, decisions at end of life pertaining to ceiling of treatment, hydration, nutrition, place of care
	Be able to discuss about cardiopulmonary resuscitation with patient and family and document preferences regarding cardiopulmonary resuscitation and appropriately document “code status” in medical record and physician orders
Team work and leadership	Learn to function as a member of the interdisciplinary team respecting the opinions of other team members and support learning and development of colleagues
	Share necessary information among team members
	Be able to refer and get specialist palliative care advice in a timely manner
	Learn to network and navigate service
Ethical and legal aspects	Understand the ethical framework that guides care and decision making (patient autonomy, beneficence, non-maleficence, justice)
	Be aware of changing/ongoing work on the legal aspects relating to advance directives, resuscitation orders, withholding and withdrawing life sustaining treatment, declaring death and documentation of death certificate
	Understand the concept of “ the desire for a hastened death” and be able to contribute to debate on the topic
Bereavement care and family support	Be able to identify grief response and support family
	Be able to identify complicated grief and offer support and provide appropriate referral to psychiatrist/psychologist
	Assist families in self-care and seeking support when a patient expires
Local data on palliative and end of life care	Be aware and interpret data in ageing population, profile of chronic illness, trends on causes of death, impact of illness on cost of care, place of death of patients and bring in relevant innovative changes.
Key attitudes	Understand the palliative care need of a patient and provide relief of suffering, maintain dignity and patient preference
	Maintain privacy and confidentiality of the information provided by the patient
	Respect for the cultural beliefs and customs of the patient and the family members in the context of death and dying
	Demonstrate the ability to compassionately and empathetically communicate
	Demonstrate the personal attributes and skills to work in a team and lead the team
	Demonstrate the ability to work with palliative care team, patient and family in decision making related to end of life and give preference to patients as to the choice and place of care
	Demonstrate the sensitivity to solve issues of vulnerable patients such as pediatric, geriatric, and transgender population

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.