EVERY YEAR, millions of people around the world living with a terminal illness experience unnecessary pain and distress, either unaware of or unable to access the care they need. More than 50 million people die every year and it is estimated that 60% of these would benefit from hospice and palliative care but the majority are not able to access these services. In such a gloomy scenario Worldwide Palliative Care Alliance is observing October 10, 2009 (today) as World Hospices and Palliative Care Day. It is a new unified day of action to celebrate and support hospice and palliative care around the world. This day is for everyone who cares and would like to make a difference. The theme is ‘Discovering your voice’. The voices of people living with life-limiting illness, their careers and families will be heard to show the importance of hospice and palliative care and what it means to them. Policy makers and key people who can influence the development of hospice and palliative care will be encouraged to speak out about this important issue.

Palliative care relates to the care of patients who have a progressive, life threatening illness, and who are confronting death in a foreseeable future. It is the active total care of patients whose disease is not responsive to curative treatment. The goal for palliative care is achievement of the best quality of life for patients and their families, according to WHO. Apart from cancer, AIDS, end stage renal disease, motor neurone diseases, progressive neurological diseases and geriatric patients need palliative care.

Though the concept of palliative care is not new, in the past most doctors have concentrated on aggressively trying to cure patients, so that concentrating on making a patient comfortable was seen as ‘giving up’ on them. In recent times the concept of having good quality of life has gained ground, although many would argue that there is a long way to go as yet. The role of doctors in palliative care has changed dramatically over last 40 years. This is to a great extent due to recognition of palliative medicine as a speciality in UK since 1987. Unlike in the west, where the government funding is available for hospice care, in countries like India it is often provided by health professionals in addition to their regular full-time job and without reimbursement. Palliative care is not incorporated into the health care system and there is limited access to active care, technology, new developments and research.

Palliative care in India is now more than two decades old. The Government of India is facilitating comprehensive cancer care which includes palliative care under the National Cancer Control Programme through regional cancer centres, other nodal agencies (like medical college) and NGOs. However, no definite fund or policy is earmarked for palliative care as yet. The chances of someone with an incurable disease in India getting any support from a palliative care unit is still remote. It is estimated that there are more than 8 million people in India suffering from one or other of the chronic illness such as cancer, cardiac, respiratory, neurological and AIDS who would benefit from palliative care. There are only less than 400 palliative care units in the whole country, most of them managed by NGOs.

The palliative care story in Assam dates back to 1999 when the Guwahati Pain and Palliative Care Society was established. This pioneer institution in palliative care is working in alliance with Dr B Borooah Cancer Institute, Guwahati by rendering out patient, inpatient and home care service. Recently, a hospice service was also inducted in its armamentarium. Regular training courses for doctors/nurses and volunteers are conducted from the Durga Nath Hemo Prova Hazarika Memorial Palliative Care Clinic located in Uzan Bazar, while link centres have been established at Digboi, Jorhat and Silchar at the initiative of the Society.

Dr DC Goswami