Palliative Care in India

Context:

It is projected that approximately 20% of Indians will be elderly by 2050, marking a dramatic jump from the current 6% and there is likely to be a shift in the disease patterns from communicable to non-communicable, which itself calls for re-gearing the health-care system toward “preventive, promotive, curative and rehabilitative aspects of health.”

Recently Karnataka became the third state in the country after Maharashtra and Kerala to adopt a Palliative Care policy, and experts say palliative care procurement law is the need of the hour for India.

What is Palliative Care?

WHO 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.

Palliative care:

  • provides relief from pain and other distressing symptoms;
  • affirms life and regards dying as a normal process;
  • intends neither to hasten or postpone death;
  • integrates the psychological and spiritual aspects of patient care;
  • offers a support system to help patients live as actively as possible until death;
  • offers a support system to help the family cope during the patients illness and in their own bereavement;
  • uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
  • will enhance quality of life, and may also positively influence the course of illness;
  • 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.

 

 

Need for Palliative care

  • Of the 9 million estimated deaths every year, almost 6 million are said to need palliative care. This includes almost all cases of cancer (80% of the 1 million new cases in India come for treatment at an advanced stage).
  • There are conditions — AIDS, muscular dystrophy, dementia, multi-organ failure, Alzheimer’s, Parkinson’s disease, end-stage renal disease, heart diseases, those who are permanently bed-ridden and people with neurological problems are increasing at all levels in India

 

Status of Palliative care in India

There has been a lot of progress in palliative care in India, but the fact remains that despite the passing of almost a quarter of a century of palliative care activity in the country, even today palliative care reaches only about 1% of the people in India.

The National Program in Palliative Care was created in 2012, but due to lack of budget allocation, only a tiny part of the programme has been implemented. Even for the part that is funded, considerable catalytic work is needed with the state governments to ensure that proper plans are made and implemented.

In short, some major barriers to access to palliative care in India have been overcome, but implementation of created policies and laws still requires massive efforts by both the government system and non-government organizations.

The main gaps for creating adequate availability of palliative care services in India are

  • Lack of palliative care services in most of the country.
  • Lack of awareness among professionals, administrators and the public.
  • Lack of facilities for palliative care education in the country.
  • Unrealistic narcotic regulations preventing access to opioids for those in pain.
  • Lack of  clear  guidelines and  resources for  those  wishing  to  provide  palliative care services.

What should government do?

  1. Improve the capacity to  provide  palliative  care  service  delivery  within  various government  programs  like National  Program  for Prevention  and  Control of Cancer,  Cardiovascular  Disease,  Diabetes,  and  Stroke;  National  Program  for Health Care of the Elderly; the National AIDS Control Program; and the National Rural Health Mission.
  2. Refine the legal and  regulatory  systems and  support  implementation to  ensure access   and   availability   of   opioids   for   medical   and scientific   use while maintaining measure for preventing diversion and misuse
  3. Encourage attitudinal  shifts  amongst  healthcare  professionals  by  strengthening and incorporating principles  of  long  term  care  and  palliative  care  into the educational curricula (of medical, nursing, pharmacy and social work courses).
  4. Promote behaviour change in the community through increasing public awareness and improved skills and knowledge regarding pain   relief   and palliative care leading to community owned initiatives supporting health care system.
  5. Encourage and facilitate delivery of quality palliative care services within the private health centres of the country.
  6. Develop national standards for Palliative Care services and continuously evolve the design, and implementation of the National Program to ensure progress towards the Vision of the program.

Conclusion

  • Palliative care is an urgent humanitarian need worldwide for people with cancer and other chronic fatal diseases. Palliative care is particularly needed in places where a high proportion of patients present in advanced stages and there is little chance of cure.
  • Ideally, palliative care services should be provided from the time of diagnosis of life-threatening illness, adapting to the increasing needs of cancer patients and their families as the disease progresses into the terminal phase. They should also provide support to families in their bereavement.
  • Effective palliative care services are integrated into the existing health system at all levels of care, especially community and home based care. They involve the public and the private sector and are adapted to the specific cultural, social and economic setting.
  • Kerala, Maharashtra and Karnataka have taken the lead and have launched state wide policies, even Tamil Nadu has created palliative care units; it is high time other states should take a cue from them and implement the palliative care units.
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