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Submitted by PatientsEngage on 11 January 2016

With a palliative care policy formulated in 2008, Kerala has become a path-breaker and a model for the rest of the country. Professor Devi Vijay of IIM Calcutta provides some insights into this community-based aspect of health care

1. What can the rest of the country learn from the success of the Kerala palliative care story?How can other countries and communities leverage this community-based model? 

There are several elements of the Kerala palliative care movement worth examining. For instance, it is a fascinating illustration of the power of bottom-up mobilization, as well as of a public health approach to palliative care delivery. 

If there is one element that must be singled out in the Kerala palliative care story, it is that of community participation in the delivery of care. In this case, the involvement of the community amplified both the scale and scope of organizing for palliative care. While the scale of organizing has diffused across the state, making Kerala the only Indian state to have coverage of palliative care in all its districts, the scope of organizing now stretches beyond provision of palliative care only for terminally-ill cancer patients, to include a range of chronic conditions such as geriatric issues, mental health, chronic renal conditions, and others that may leave a patient bed-ridden. Further, in response to the continued lobbying of several community-based organizations, Kerala state government came out with a landmark policy in 2008, mandating that medical practitioners at primary health centres must be trained in palliative care, and that these centres must work in collaboration with the extant community organizations. 

What is crucial to note is that the term “community-based” is an oft-abused term. In its weakest sense, community-based is used to capture any form of community involvement, which for instance may be restricted to limited functions such as mobilizing resources or elementary/unchallenging involvement such as transporting patients (while these are no doubt important services, they do not fully engage the community’s strength and resources).  Such a form with limited community participation is arguably less likely to generate commitment and sustainability of organizing over years. In Kerala, the effective community-based organizations are where we see instances of community ownership; i.e. where the community is involved in all aspects of planning, care-giving, resource-mobilization, and so on. This has implications not just for palliative care, but for other forms of community-based organizing as well. 

Kerala’s community-based palliative care has implications not just for developing countries, but for developed countries as well. Studies have now well documented how patients prefer to die from home, and not in hospitals, nursing homes or hospices, stripped of their routines and familiar conditions, and isolated from their loved ones. Atul Gawande, in his recent bestseller Being Mortal, describes this malaise of modern health care systems in detail. In this case, Kerala’s model of home-based care delivered within the patient’s community provides a fantastic alternative. 

2. What are the main challenges facing palliative care in India? What would you like people to know about palliative care and specifically what are the myths surrounding it?

I think there are three key challenges: 

a. Awareness about palliative care among the general population. Palliative care is an unfamiliar term even today in India. Even when people have some awareness about the term, their understanding may be riddled by myths. One common myth is that palliative care implies “giving up”. Like a sign of acknowledging impending death. Or that palliative care is about end-of-life care. This is wrong. In fact, the WHO’s statement on palliative care clearly states that palliative care “is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications”.

b. The challenge that palliative care practitioners themselves face. Palliative care specialists lament the inadequate referrals to palliative care, or when referred, the tragically late stage of referral. This primarily arises out of a treatment-centric logic in prevalent healthcare systems world-wide – the proclivity to treat the patient to the last breath, a logic where death is seen a failure of the doctor rather than as an inevitability that needs to be at some point acknowledged and prepared for. Transforming such deeply entrenched logics requires a change of discourse within the medical community. For instance, discussions on palliative care often occupy no more than one chapter in the entire medical school curriculum. 

c. The difficulty of access to opioids in India. A study published in 2007 by M.R. Rajagopal, one of the pioneers of palliative care in India, with David Joranson, indicates that while a million people with cancer or incurable diseases need opioids for pain relief, only 0.4% of this population receives it. Despite almost two decades of lobbying by palliative care practitioners in India, access to opioids remains riddled with complicated regulations. The tragedy of this situation is heightened by the fact that India is one of the largest exporters of opium used in the manufacture of the most commonly used opioid analgesic across the world. 

3. For palliative care to be effective, does it have to look beyond just health care? What is needed to create successful palliative care infrastructure?

Perhaps foremost, effective palliative care infrastructure must be built on a continuum of care beyond the hospital or hospice setting, ideally at home within the patient’s community

One of the key elements of the Kerala approach is the notion of total home-based care. Total care in the Kerala model implies not just home-based care for relief from medical symptoms, but also emotional, social and financial support, bereavement counselling and rehabilitation of patient or family when applicable. To elaborate, here you have remarkable cases of community volunteers mobilizing resources to provide financial support to patients and their families in a range of ways from supporting children who are dropping out of school, providing food kits to the destitute, even fulfilling a patient’s dying wish by building a house for his family, or by collecting money from local communities to get a patient’s daughter married! In this framing of palliative care, total care is not just about alleviating physical pain, but any kind of suffering. 

Dr.  Suresh Kumar, one of the pioneers of palliative care in India and an advocate of community-based palliative approaches, insists that these non-medical parameters must be factored in to evaluate quality of care. In his opinion, evaluating quality of palliative care purely based on medical criteria are deficient, in that they define pain in a narrow fashion.

4. Could you name some of the palliative care centres around India that are doing good work and that one can contact for advice?

There are several remarkable efforts across Kerala. Here are a few that have been functioning for years as nodal points: 
Institute of Palliative Medicine, Kozhikode, Kerala: http://www.instituteofpalliativemedicine.org/contactus.php
Pallium India, Trivandrum, Kerala:  http://palliumindia.org/
Cipla Palliative and Training Center, Pune, Maharashtra: http://www.carebeyondcure.org
Karunashraya hospice, Bangalore, Karnataka: www.karunashraya.org
Department of Palliative Care, St John’s Medical college: www.stjohns-hospital.com
CanSupport, New Delhi: http://www.cansupport.org/
Sanjeevani Palliative Care, West Bengal
Tata Memorial Hospital Palliative Care Clinic, Mumbai, Maharashtra: https://tmc.gov.in
(Dr. Maryann Muckaden, Officer-in-charge, Palliative Care Unit)

Pallium India has a list of palliative care clinics across the country: http://palliumindia.org/resources/clinics/

5. What does it take for palliative care to be applied beyond cancer?

The WHO today defines Palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” [emphasis added]. Thus, formally, it is well-recognized that palliative care is applicable to life-threatening illnesses beyond cancer. Yet, in practice, care is often limited by some of the challenges discussed above, such as lack of awareness among general population, treatment-centricity within hospital systems and so on.