|Year : 2018 | Volume
| Issue : 2 | Page : 55-58
Palliative care in India: Trials, tribulations, and future prospects
Department of Medicine, Associate Professor of Medicine, Mahatma Gandhi Institute of Medical Sciences, Wardha, Maharashtra, India
|Date of Web Publication||11-Oct-2018|
Dr. Vishakha Jain
Associate Professor of Medicine, Mahatma Gandhi Institute of Medical Sciences, Sevagram, Wardha, Maharashtra
Source of Support: None, Conflict of Interest: None
|How to cite this article:|
Jain V. Palliative care in India: Trials, tribulations, and future prospects. J Mahatma Gandhi Inst Med Sci 2018;23:55-8
India is faced with a twin burden of communicable as well as noncommunicable diseases (NCDs), setting a complex health policy challenge which requires bridging public health task of infection control and the modern goal of NCD prevention and management. With the ever-expanding horizon, NCDs are the leading cause of mortality in India. The modern medicine has turned previously fatal illness into chronic diseases and hence most people live for many years with the symptom burden of one or more serious illnesses, functional or cognitive impairment, and dependence on care from family or society. There are estimated 2.5 million people living with cancer in India, with every year about 700,000 new cancer cases registered. The International Agency for Research on Cancer GLOBOCAN project has predicted that India's cancer burden will nearly double in the next 20 years, from slightly over a million new cases in 2012 to more than 1.7 million by 2035. These projections indicate that the absolute number of cancer deaths will also rise from about 680,000 to 1.2 million in the same period. Globally, in 2011, over 29 million (29,063,194) people died from diseases requiring palliative care. The estimated number of people in need of palliative care at the end of life is 20.4 million. The European and South East Asia regions have the highest rates of palliative care for progressive nonmalignant diseases.
Palliative care is a specialty of health care that deals with not only the attitude and values of care, but caters to the patient dealing with chronic, debilitating, life-threatening illness from diagnosis till death. It not only aims to provide optimal quality and organized care to these patients, but also helps in the bereavement of the family and caretakers after the death of the patient. Dr. Baulfor Mount coined the term “palliative care” around 1975 to describe his hospice program in Canada, and it has since gained acceptance worldwide. The WHO defined palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification, impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.” Thus, palliative care has its sphere of influence not only at the physical and emotional needs of the patients and their relatives, but also aims to improve the physician–patient communication and provision of multispecialty coordinated care. Palliative care is intended right from the starting of the treatment of cancers in conjunction with chemotherapy and radiotherapy.
It is estimated that in India the total number of people who need palliative care is likely to be 5.4 million people a year. Though palliative care services have been in existence for many years, India ranks at the bottom of the Quality of Death index in overall score. India also lacks in the awareness and existence of the hospice care. According to the Worldwide Palliative Care Alliance (WPCA), although >100 million people across the world would benefit from hospice and palliative care annually, <8% of those in need access it. In India, especially as most of the cancers are detected in the late stages, it is estimated that >1 million people would be in need of palliative care.
The need for palliative care is ever increasing at a faster pace due to increase in aging population as well as increase in cancers and other NCDs. Palliative care for cancer has been known since the 1990s, but the spectrum of palliative care seems to be ever expanding for other chronic disease and conditions such as HIV/AIDS, congestive heart failure, cerebrovascular disease, neurodegenerative disorders, chronic respiratory diseases, drug-resistant tuberculosis, and diseases of older people. Palliative care should be delivered on the basis of need, not diagnosis or prognosis, and should be available at all levels of care. The UN Committee on Economic, Social and Cultural Rights reports that it is critical to provide “attention and care for chronically and terminally ill persons, sparing them avoidable pain and enabling them to die with dignity.” However on the bleak side, due to lack of awareness, palliative care is not recognized much by patients suffering from other chronic diseases other than cancer. Hence, expert palliative care involvement needs to be explicated especially for noncancer patients.
| Current Status of Palliative Care in India|| |
The palliative care medicine gained its momentum in the early 1990s mainly driven by the nongovernmental sector promoting awareness and increasing avenues of care. The Pain and Palliative Care Society, Calicut, Kerala, formed in 1993, is one of the nongovernmental organizations (NGOs) that have played a pioneering role in developing palliative care in the country. Another NGO, CanSupport, founded in 1997 in Delhi started providing the first free palliative care home care support service in North India. Four NGOs in Kerala joined together in 1999 to launch Neighborhood Network in Palliative Care (NNPC), a major community-owned initiative in palliative care. According to global mapping of levels of palliative care development, in 2011, India moved from category Group 2 (capacity building) to Group 3b (generalized palliative care provision).,
India has only a handful of palliative care centers localized to certain urban parts of the country. Despite efforts for almost three decades from various corners, palliative care services are nonexistent or minimally developed in most regions of the country. Although there are places where excellent palliative care is offered to a lucky few, <2% of those needing palliative care in the country receive it. Kerala has been the pioneer for offering excellent palliative care in our country supported by government policy that ropes provision of palliative care through the public health system., At present, there are approximately 1000 palliative care units in India, with about 90% of these being located in Kerala which caters to only 3% of country's population.
The second bone of contention in the status of palliative care in our country is the availability of morphine. India being in Group 3b according to global mapping levels of palliative care mandates the availability of morphine. However, based on the data, the total amount of morphine released by the government alkaloid factory to palliative care units and pharmaceutical companies shows that the consumption of morphine in India is lowest with only 0.22% citizens having access to morphine., The modification of Narcotic Drugs and Psychotropic Substances act by many state and union territories to make medical procurement and use of opioids easier has not practically benefitted in the easier access of opioid analgesics for patients due to lack of training in pain and palliative care., India falls in a very absurd and enigmatic situation where it is the largest exporter of legal opium for medical purposes but denies opium to 99% of its needy citizens.
However, things have been changing in the last decade – the Medical Council of India started a course of MD (palliative medicine) in 2010; in 2012, the Ministry of Health announced a National Programme for Palliative Care; in 2014, the draconian NDPS act was reformed and the power for legislation regarding opioid analgesics was shifted from the state governments to the Central government.,
| Challenges to Implementation of Palliative Care in India|| |
There have been many challenges and barriers to the implementation of palliative care globally. The palliative care development follows the public health model developed by the WHO. The palliative care provision and global development is still patchy throughout the world. However, there have been promising developments happening globally (increase in 21 countries [9% increase] offering palliative care services). The governments' and policymakers' interest has still been in cursory stages worldwide. Let us deliberate over the challenges to implementation of palliative care in India.
India does not have national policy on palliative care and it very difficult to foster the support for development of palliative care without a policy. The Indian Association of Palliative Care established in 1994 is the national organization, which is actively engaged in enhancing palliative care through its activities of awareness, advocacy, training, policy, and program development. There is lack of trained personnel, no separate allocation of funds, dearth of national standards of care and protocols for palliative care, and no national strategy on palliative care implementation.,
The worldwide palliative care community and related human rights organizations have advocated for balance to be restored by paying equal attention to both medical use and prevention of illicit use of opioid analgesics. The amendment of NDPS act and possible removal of hurdles in access to opioid analgesics offer a ray of hope to the needy patients.
Capacity building (education)
The vast majority of health professionals worldwide have little or no knowledge of the principles and practices of palliative care and it holds true for India as well. There is a palpable need for inclusion of basic training on palliative care in undergraduate medical and nursing colleges as well as continuing professional education should include palliative care for existing health professionals.
The commitment to the cause of palliative care from the leaders and visionaries of the society can translate into trained workforce, resource and infrastructure intensification, and guideline development.
Psychological, social, cultural, and financial barriers
Palliative and hospice care are considered “end-of-life” issues by patients. This creates a psychological barrier in the community that even discussing anything remotely related to death is considered harmful. There is no evidence to support this belief and recent evidence points to the possibility that palliative care may actually improve survival. Informing the patient about the diagnosis and prognosis in cases of life-threatening illness is discouraged in our culture. However, the scenario has been changing and patients like to participate and take decisions in their management of disease. Also, in India, when most of the patients pay from their own pockets for health care, the financial burden of life-threatening illness has a major impact on the families. While hospice and palliative care have been found to be cost-effective in many studies, these are mainly prevalent in developed countries.
| Models of Palliative Care|| |
The WPCA acknowledges many model programs globally that have developed in different cultural contexts, often with close community involvement. There are two examples of programs (Kerala, India, and Arusha, Tanzania) that make effective use of volunteer community health workers; a beacon for palliative care training and advocacy (Brasov, Romania); a program that has achieved the highest level of penetration in the population needing palliative care (Florida, US); a program that has introduced palliative care into the government-run health system (Vietnam); a program that has introduced palliative care into acute facilities (Argentina); and a quality hospice program in the United Kingdom.
Neighborhood Network in Palliative Care, Kerala, India
NNPC is a community-owned program which evolved by focusing on the needs of the community and is thriving due to active community participation. The NNPC aspires to empower local communities to look after their chronically ill and dying patients and works to maintain the spirit of self-reliance. The NNPC works on the principle of service provision, laced with a community-based health-care system utilizing local workforce and resources which in the long run is more culturally and socially acceptable. The NNPC is a highly sustainable model due to community ownership. Since the year 2000, the NNPC has trained volunteers from the local community to identify problems of the chronically ill in their area and to intervene effectively, with active support from a network of trained professionals. Currently, the NNPC is proud of its vast network of more than 500 community-owned palliative care programs, looking after more than 15,000 patients and with over 15,000 trained community volunteers. The NNPC works with 3-prong approach of home visits by community volunteers, nurse-led home care services (supplemented by home visits by doctors), and outpatient clinics run by a team of palliative care physician and nurse. Services offered by outpatient clinics and professional home care units include medical consultations, medicines, procedures such as tapping of ascetic fluids, and wound care. NNPC groups also offer emotional support to patients, food for the needy patients and family, educational support to their children, transport to hospital when required, and social rehabilitation programs in addition to the medical and nursing services.
| Future Prospects of Palliative Care in India|| |
The medical community needs to wake up to the bleak scenario of violation of the right to dignity and right to health of the individual that has been happening in our country by denying optimal palliative care and pain relief to the needy patients. The Government of India too needs to be shaken out of their deep slumber to intensify their efforts to translate the change in the legal act (amendment of NDPS act) into actual increase in the availability of the opioid analgesics by removing the red tapism in bureaucracy. However, will these two things ensure the improvement in the palliative care scenario in our country? At the ground level, if our medical and nursing graduates are not trained and sensitized adequately to handle the pain relief and palliative care, the availability of infrastructure and resources will be in vain. Hence, it will be worthwhile to consider the following recommendations:
- Inclusion of essentials of pain management and palliative care in undergraduate medical and nursing curriculum
- Relaxing the needless regulatory barriers and streamlining the availability of opioid analgesics at point of care (of course taking care of prevention of its abuse)
- Palliative care should be integrated with routine health care by introducing a national-level health policy on palliative care
- Capacity building at all levels – medical offers (at primary health center and community health center), nurses, and pain and palliative care specialists with a singular vision of striving for excellence in palliative care
- Increasing number of palliative care centers throughout the country which would ensure provision of facilities and medicines to the needy and sustainability of the services.
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