Concept of Palliative Care

Palliative care is a health care specialty that is both a philosophy of care and an organized, highly structured system for delivering care to persons with life-threatening illness. WHO defines 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 and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual. “The goal of palliative care is, therefore, to improve the quality of life of both patients and families by responding to pain and other distressing physical symptoms, as well as to provide nursing care and psycho-social and spiritual support. This is why it is best administered by an interdisciplinary, multi-dimensional team, comprising of doctors, nurses, counsellors, social workers, and volunteers.

Every hour more than 60 patients die in India from cancer and in pain.  It is estimated that in India the total number who need palliative care is likely to be 6 million people a year. In addition to the challenges posed by illnesses, many of the patients in India are extremely poor and do not have access to clean water, food, or even shelter. When chronic or life-threatening illnesses strike, it is a crippling blow for them and their families. There is therefore a crucial need for a system of care at home that can best be built by a community-based palliative care movement. The concept of palliative care is relatively new in India, having been introduced only in the mid-1980s. In India, the earliest facilities to deliver palliative care within cancer centers were established in some places like Ahmedabad, Bangalore, Mumbai, Trivandrum, and Delhi in the late 1980s and the early 1990s. In 1986, Professor D’Souza opened the first hospice, Shanti Avedna Ashram, in Mumbai, Maharashtra. At the same time, pain clinics were established at the Regional Cancer Centre, Trivandrum. Can Support was founded in 1997 in Delhi which provided the first free palliative care home care support service in North India. In Pune, Maharashtra, the Cipla Cancer Palliative Care Centre was established.

There are 138 organizations currently providing hospice and palliative care services in 16 states or union territories. These services are usually concentrated in large cities and regional cancer centers, with the exception of Kerala, where services are more widespread. The Kerala network has more than 60 units covering a population of greater than 12 million and is one of the largest networks in the world. Karunashraya Bangalore Hospice Trust established a 55-bedded hospice with a homecare service.

Home-based palliative care services are becoming increasingly popular with care being taken to the doorstep of the patient. Ideally, this is where people are most comfortable at the end of their lives, surrounded by their loved ones. It is also well suited to conditions in India where a family member is usually available and willing to nurse the sick person. The aim of home-based care is ultimately to “promote, restore, and maintain a person’s maximum level of comfort, function, and health, including care toward a dignified death.” Home-based care models are also generally person-centered and comprehensive, with the aim to take into account factors such as culture, religion, and value systems, and respect people’s rights to privacy and dignity. It is also cost-effective as it does not entail doctors and nurses’ fees and travelling to the hospital repeatedly for follow up visits and unnecessary investigations and treatments. Increasingly, people are choosing hospice care at the end of life. Hospice care focusses on the care, comfort, and quality of life of a person with a serious illness who is approaching the end of life. Like palliative care, hospice provides comprehensive comfort, care as well as support for the family, but, in hospice, attempts to cure the person’s illness are stopped. Sometimes people don’t begin hospice care soon enough to take full advantage of the help it offers. Perhaps they wait too long to begin hospice and they are too close to death. Starting hospice early may be able to provide months of meaningful care and quality time.

The rich may die in clean and hygienic surroundings or in hospitals tied to tubes and lines but they are likely to be in extreme pain. Pain management is a science poorly understood in India and even when drugs are available, they may be doled out in doses too small to be helpful. The irony of this particular problem is that India is the world’s leading manufacturer of morphine, the drug of choice for managing excruciating pain. It produces most of the world’s supply, yet exports over 90% of it, callously denying its own people. Terrified by its addictive properties, which are undisputed, the Indian Narcotic Drugs and Psychotropic Substances (NDPS) Act severely curtailed the medical use of Morphine, making it so difficult to obtain that most doctors never even bothered to apply for six licenses which were required. Its scarcity meant that no one knew how to administer it; its use is not taught in 80% of the country’s medical colleges. However, an amendment to the NDPS Act was passed by Parliament, loosening the restrictions on morphine and paving the way for better pain relief for the terminally ill within the country.

Twelfth 5-year plan made a special provision for Palliative care. For palliative care there will be dedicated 4 beds at the district hospital. Doctors, nurses, and health workers will be trained in basic palliative care. One of the doctors in the District hospital needs to have a 2 weeks training in palliative care. WHO recommended three foundation measures for developing Palliative care—Governmental policy, Education, and Drug availability. They are important for establishing a sustainable Palliative care, and achieving meaningful coverage. A milestone was achieved in Palliative care when MCI recognized MD in Palliative Medicine and this helped to develop as a specialty of P.C in our country. IAPC has worked for this for many years.

For majority of clinical problems patient care is disease-oriented. Palliative care is not disease-focused approach but patient-centered philosophy, where the needs of the patient and the patient/family goals are essential to planning care. The goal of palliative care should continue to focus on the relief of suffering and the improvement of the quality of life for patients with advanced illness.

In India, medical insurance does not play a significant role in hospice and palliative care provision. Services are funded in a range of ways including: central government; state government; NGOs; indigenous-fund raising; private companies; private individual and international donations.

Indian palliative care movement has innovated and produced services such as the NNPC, and set up an exemplar model of community-based palliative care for other low-resource countries world-wide. The innovation, enthusiasm, and commitment of volunteers, families, activists, and palliative care practitioners are clearly the driving force of Indian palliative care.

Dr. A.K. Dewan
Director – Surgical Oncology