Over one million new cases of cancer are registered in India every year, with over 7,50,000 cancer deaths in 2018 alone[1]. More than a third of patients undergoing cancer treatment, and 60% to 90% of those in advanced stages of cancer report significant pain[2]. On occasion of World Cancer Day today, 4th February, 2020, it is imperative to review an often-overlooked aspect of comprehensive cancer care that focuses on alleviating pain and improving quality of life: palliative care.
PALLIATIVE CARE
The World Health Organization (WHO) defines palliative care as “an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering…from pain and other problems, whether physical, psychosocial or spiritual.”[3] An estimated 80% of all adults and children dying from cancer require palliative care at end of life[4]. This estimate does not take into consideration those needing palliative care early in the course of their illness. Early palliative care not only improves quality of life for patients but also reduces unnecessary hospitalizations and use of health-care services[5].
PALLIATIVE CARE IN INDIA
The Indian public health system has made some effort over the years to improve the availability and accessibility of quality pain relief and palliative care. The Government of India, in a collaborative programme with WHO, formed an expert group in June 2008, with the goal of establishing guidelines for developing palliative care services in the country. This expert group made recommendations in the form of a detailed manual to help institutions start palliative care services in both hospital, and community settings.
In November 2012, a Strategy for Palliative Care in India was proposed by another expert committee under the aegis of the Ministry of Health & Family Welfare, which resulted in the establishment of the National Programme for Palliative Care (NPPC) under the National Health Mission (NHM). The implementation of the programme would be under the National Programme for Prevention and Control of Cancer, CVD, Diabetes, and Stroke (NPCDCS), with a major strategy being provision of funds for setting up palliative care services at district hospitals, and creating state palliative care cells. The funds would be distributed in a 60:40 proportion between the Centre and states (90:10 in North-East and Hill states). As of 2017, nineteen states of the country were in varying stages of operationalizing palliative care units in select district hospitals[6].
In several states, such as West Bengal, Kerala, Assam, and Telangana, government efforts in providing palliative care are also complemented by NGOs. Their contributions may vary from technical support, capacity building, and training of healthcare professionals, to advocacy and outreach activities in support of raising awareness of palliative care.
Three types of palliative care services are available in India: Home-based care, Outpatient services, and Hospice (in-patient) care services. An institution can provide any one of these services, any combination of these services, or all of these services at a time. Home-based care caters to people with cancer in advanced stages who choose to receive care in the comfort and privacy of their homes. It is also one of the few ways patients in rural areas can access palliative care when health care facilities are sparse. Out-patient services facilitate all aspects of palliative care for patients and their families, while hospice care is recommended for management of difficult symptoms requiring expert management, and terminal phase (end-of-life) management.
PALLIATIVE CARE IN TELANGANA
Palliative care in Telangana has received a boost in support in the last decade, following the establishment of the Department of Pain and Palliative Medicine at MNJ Institute of Oncology, Hyderabad, in 2011. Set up in a Regional Cancer Centre, the department provides out-patient palliative care from its premises through a trained staff that includes anaesthesiologists, physicians and nurses, led by Dr Gayatri Palat, a palliative care expert trained in Kerala. Dr Palat also co-founded the Pain Relief and Palliative Care Society (PRPCS), Hyderabad, which provides hospice care (at the Kumudini Devi Hospice, a 21-bedded facility that receives referrals from MNJ Institute) and home-based care (serving Hyderabad and nearby areas via five mobile units).
PRPCS conducts a six-week certificate course in pain and palliative medicine and nursing with the MNJ Institute for health professionals from across the country. They also established a paediatric palliative care programme in the MNJ Institute, that provides a similar continuum of care for children. The PRPCS also supported the Government of Telangana in establishing eight palliative care centres across the state, which provide in-patient services (8 to 10 beds in a district hospital), as well as home-based care. Following advocacy efforts from civil society and experts, the state was encouraged to apply for funds under the NPPC in 2017, which led to successful operationalization of the above eight palliative care units through grants from the central government and state funds.
CHALLENGES IN IMPLEMENTING PALLIATIVE CARE PROGRAMMES
The availability of morphine—a scheduled drug essential for pain management in serious cases—used to be a challenge in provision of palliative care services in India. Due to earlier stringent regulations, the supply of morphine was severely restricted across the country, subject to rules laid down by the Narcotics, Drugs, and Psychotropic Substances Act of 1985. Following an amendment to the Act in 2014, morphine and similar opioid pain medications are now made available for clinical use by licensed practitioners, providing suffering patients much needed relief.
While low awareness of patients in seeking palliative care is a challenge, a bigger issue is that of referral of such patients to palliative care by oncologists and physicians. A common misconception among oncologists is that palliative care implies merely end-of-life care. The goal of palliative care is in fact to provide the best possible quality of life, at every stage of treatment, starting from diagnosis. The advantage of early palliative care has been demonstrated to influence patient-related outcomes too.[7]Such a misconception, in addition to lack of awareness among the medical community of palliative care entirely, leads to a vast number of patients and their families with no avenue to seek relief during treatment.
THE WAY FORWARD
Under the newly-launched Ayushman Bharat, Health and Wellness Centres are envisaged to provide comprehensive primary health care, which includes twelve packages of services, one of which makes mention of palliative health care services. While it is a step in the right direction, the fact that palliative care is still not part of the essential packages—mandatory for all participating states to conform to—implies that there is a high chance that states may choose not to provide these services. A higher impetus in implementing palliative care through the NPPC under NPCDCS by state governments is required, which will lead to more funds allocated to this aspect of pain management. Palliative care is not a very high-cost speciality requiring vast capital investment[8]. Adequate well-trained personnel, and smooth supply of medication, are key factors that impact quality of care for the suffering.
“We cannot change the outcome, but we can affect the journey”
[1] International Agency for Research on Cancer, WHO (2018). Globocan 2018 Fact Sheet for India.. https://gco.iarc.fr/today/data/factsheets/populations/356-india-fact-sheets.pdf. Accessed 2 February 2020
[2] Foley, K. M. (2000). Controlling cancer pain. Hospital Practice, 35(4), 101-112
[3] World Health Organisation. (2018). Palliative Care Fact Sheet. https://www.who.int/news-room/fact-sheets/detail/palliative-care. Accessed 2 February 2020.
[4] Global Atlas of Palliative Care at the End of Life, World Palliative Care Alliance; WHO, (2014). https://www.who.int/ncds/management/palliative-care/palliative-care-atlas/en/. Accessed Feb 2, 2020
[5] World Health Organisation. (2018). Palliative Care Fact Sheet. https://www.who.int/news-room/fact-sheets/detail/palliative-care. Accessed 2 February 2020.
[6] Palliative Care Units for Cancer Patients, Ministry of Health and Family Welfare, PIB Delhi (2017). https://pib.gov.in/PressReleaseIframePage.aspx?PRID=1498830. Accessed 2 February 2020.
[7] Salins, N., Ramanjulu, R., Patra, L., Deodhar, J., & Muckaden, M. A. (2016). Integration of Early Specialist Palliative Care in Cancer Care and Patient Related Outcomes: A Critical Review of Evidence. Indian journal of palliative care, 22(3), 252–257. doi:10.4103/0973-1075.185028
[8] Civil Society News, Hyderabad. “We have set up palliative care centres in 8 districts.” Interview with Dr Gayatri Palat. Published Nov 30, 2018. https://www.civilsocietyonline.com/interviews/we-have-set-up-palliative-care-centres-in-8-districts/. Accessed 2 February 2020.