Palliative care is an approach that improves the quality
of life of patients and their families facing the problems
associated with life-threatening illness. The focus is
prevention and relief of suffering by means of early
identification, assessment and treatment of pain and
other problems physical, psychosocial and spiritual.
- provides relief from pain and other distressing symptoms
- affirms life and regards dying as a normal process
- intends neither to hasten nor postpone death
- integrates the psychological and spiritual aspects of 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 patient's illness and in their own bereavement
- uses a team approach to address the needs of patients and their families, including bereavement counseling
- will enhance the quality of life, and may also positively influence the course of the 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
Incredible medical advances juxtaposed against grinding poverty and deprivation provide the framework for a global conversation that is just beginning, but will be with us for a long time as families, governments and global relief organizations struggle with the realities of death and dying.
For the first time in the history of humanity, people over the age of 65 will soon outnumber children under the age of five. This will happen some time during the next few years. By 2030, the number of people aged 65 and older is projected to reach one billion, rising even more sharply (by 140%) in developing countries. For the end-of-life care community, this presents a new and complex set of problems.
According to the findings of the Economist Intelligence Unit 2010 report (Lein Foundation, The Quality of Death: Ranking End-of-Life Care Across the World), India ranks last (#40) in the overall score for their Quality of Death Index. There are very few cancer facilities and, therefore, little time or space in India’s overburdened hospitals for the care of the terminally ill. Put simply, every year tens of thousands of cancer patients will die agonizing and undignified deaths without medicine, symptomatic care or support. Less than 3% of India’s cancer patients have access to adequate pain relief. Population density, poverty, poor or even bad nutrition, literacy, the cultural stigma associated with cancer and lack of awareness about cancer symptoms and palliative care compound the problem.
Hospices are very rare in India and only 16 of India’s 28 states and 7 union territories (less than 45%) have any palliative care services at all. Many states in India have absolutely no medical facilities that prescribe morphine. North India, in particular, is almost completely bereft of any type of support for the terminally ill. Uttarakhand is one of the 19 states in India that have no provision for palliative care. Although 7,000 new cases of cancer a year are reported in this state, cancer facilities especially those related to palliative care are very few.
Taking Stock of Palliative Care in India
The first Indian Palliative Care Initiative Conference, organised by the US-based Jiv Daya Foundation and Indo-American Cancer Association, took place in Delhi on the 13th of March, where eighteen organizations, hospitals, and cancer centers from across the country got together to share with each other the problems they faced in reaching palliative care to patients. As physicians, surgeons, anesthetists and radiologists presented information about how their palliative care work had grown over the last year, one could get a sense of how pain-relief medical initiatives were finding roots and needy beneficiaries in India.
They spoke about how their out patient departments are run, how pain-relief medicines are dispensed free of charge, and how the medical teams are working with great innovation in far-flung areas to ensure that people get medical care no matter what the circumstances.
According to estimates, there should be 2.2 million new cancer diagnosis in India every year, but according to government estimates, the known diagnoses figure stands only at 948,000. The remaining estimated 1.25 million cancer patients constitute the “invisible” cancer load of India: patients who are too poor to afford health care, who live and die with cancer and never receive the medical attention they need.
Dr. M.R. Rajagopal, the father of palliative care in India, spoke about how less than 1% of the patients who need pain-relief actually receive it. “If we allow a patient to suffer pain, it amounts to torture and is a violation of human rights,” Dr. Rajagopal said.
Availability of opioids for effective pain relief was a central point of the discussions. India, even though a producer of opioids, lags behind other countries in making them available to patients for pain-relief because of strict opioid-control laws and regulations.