End-of-life care is among the most important issues in health care. Every one of us will die sooner or later. Some (<10%) will die comfortably and others (>90%) will die with a great deal of suffering.

The relief of human suffering is the primary goal of the medical profession(1). Suffering in a child is difficult to understand but the goal should be to take care of physical, psychological, social, spiritual and practical issues of the patient and the family jointly and compassionately. Education of physician on end-of-life care (EPEC) is aimed to train physicians in improving the quality of life of children who are living with, or dying of, life threatening or chronic illnesses.

There is a changing trend in the pattern of childhood diseases in India. Infectious diseases and malnutrition cases are decreasing. Chronic disabilities, malginancies and AIDS cases are increasing. Neurodevelopmental disabilities (mental disorder, cerebral palsy, Autism, ADHD, etc.) account for 15% of the population of children in India(2). Childhood cancer cases are surviving and living for a longer period. Pediatric AIDS, the newest chronic disease, has affected 5.6 million children aged <15 year in the year 1999; this is equivalent to almost 15,000 new infections per day. In India, there are 1 million women (15-49 years) and 48,000 children (0-15 years) living with HIV/AIDS. Cummulative deaths due to AIDS in adult and pediatric age groups in the year 1997 were 1,40,000(3). These chronic diseases present at different periods of stability and progression, with multi-system involvement and special symptoms. Very low birth weight infants (<750 g) who require aggressive cardiopulmonary resuscitation (CPR) during the first day of life are surviving and are at increased risk of having long-term deficits. Many surgical procedures in complicated congenital anomalies are done successfully at birth and increase the burden on the child and family. Ethical matters are often not discussed with parents while putting a severely asphyxiated baby in a ventilator. No due consideration is given to the psychological aspect of a child who has cancer or is suffering from chronic disease. It is now the right time for pediatricians to learn the art of end-of-life care, as they will have to face many challenging situations in the near future.

In India, medical insurance does not play any significant role in hospice care. The prevailing social and financial scenario in India provides adequate justification for the need for end of life care in India. Studies conducted abroad have shown a significant decline in lifestyle or leaving work to take care of loved ones. In one study in USA, 31% families lost most of their savings caring for their loved one. In another study of cancer patients, 40% of families became impoverished providing care(4). Sometimes such pressures precipitate frustration and parents often seek physician assisted suicide as in the famous ‘Baby Doe’ case where a severely defective newborn died 6 days after birth when the baby’s parents requested that physicians withhold intravenous feeding and forego corrective surgery. Adult patients can plan suicide as in the case of Elizabeth Bovia of California. She was granted the right to refuse nasogastric feeding by court of law. Relatives can also seek physician-assisted suicide or euthanasia as in Paul Brophy’s case of Massachusetts and Helen Corbett’s case of Florida, where life-sustaining methods were withdrawn with the consent of court.

Today, the trend in many Indian families is to live separately rather than as a joint family and parents spend more time outside home to earn their livelihood. This has resulted in social isolation and has created a different situation from the one that existed in the past. Today, when a patient needs assistance, the burden of care giving frequently falls often on unskilled women at home and without the proper facilities. Besides, Indians also face financial constraint in providing care to a handicapped or a terminally ill child. Inspite of having strong emotional bonding, some families find it difficult to take care of their loved one’s at home.

Every one of us want to die at home in the comfort of family surroundings. An estimated 80% of all deaths now occur in hospitals, shielded from the family and community’s sight. Everybody wants to shift terminally ill patients to a hospital against his/her earlier desire, even though they know that the final outcome is bad. Terminally ill patients, can also be well managed at home.

In order to help families care for patients with advanced life-threatening illness at home, hospice agencies started to appear across the world in the late 1970s. However, in India, we are yet to see such an organization. Though some NGO’s are working for old people, the concept for care of terminally ill children does not exist even in the developed nations. Hospices care for only a minority of dying patients: 11% of all deaths in the US in 1993 and 17% in 1995. Of those patients dying of cancer in the US, only about 40% are ever referred to a hospice agency(5). The situation is similar for both adult and pediatric patients.

Palliative care programs have an important role in caring for terminally ill patients. Designed to improve the quality of patients’ lives while they fight their disease, good palliative care may help to increase life expectancy in certain patients according to anecdotal experience.

End of life care is a new concept in modern medicine. It is difficult to make the general public and health workers understand the need and the existence of problems. For example, some physicians fear use of narcotics in terminal pain management. This has resulted in under treatment and suffering for the patient. Medical development has gone far ahead and there is a need for change in laws pertaining to end-of-life care. Fears, worries and lack of confidence have resulted in avoidance among physicians in dealing with dying patients.

India, with majority of its population living in rural areas, may find it difficult to provide quality care to all patients with life threatening illness. Many people question the productivity of a life in India. But after all ‘life is a life’ and it should be valued with dignity. We are at an advantage of mobilizing social and religious workers easily from the local people who can help in relieving psychological, social and spiritual suffering in a patient. This vast resource of allied services has not been tapped adequately and can be utilized for better care of terminally ill patients.

There is a general consensus that end-of-life care must improve. Though we do not have any formal studies in India, majority of Indians feel that doctors should take the full responsibility in such a situation. In 1997, an American Medical Association (AMA) Public Opinion Survey asked, "Do you feel your doctor is open and able to help you discuss and plan for care in case of life-threatening illness?" The results showed that the majority of Americans (74%) expect their physician to be confident and competent to provide them with care when they do develop a life threatening illness(6). Doctors feel uncomfort-able when facing a challenging situation like end-of-life care.They try to avoid the situation by dumping the patient in intensive care, connecting to a ventilator, putting an intravenous line and inject few drugs to buy some time. They fail to understand the physiology of last hours of living and give unnecessary medications. In 1983, Vinoba Bhave, a real Gandhian follower and freedom fighter, known for his ‘Bhoodan Andolan’, at his Pawnar ashram in Wardha refused all the medications during his last stage of life. Doctors responsible for his treatment had a difficult time in dealing with the politicians and famous personalities present at that moment. This was because of lack of training on end-of-life care. When surveyed by the AMA in 1997-1998, only 4 of 126 US medical schools required a separate course in the care of the dying, while 121 schools reported they covered the topic as part of a required course as a lecture or a seminar but none of them had a clear curriculum in their medical and postgraduate training.

EPEC Project–"Education for Physicians on End-of-life Care" started by American Medical Association is intended to help physicians take care of their portion of the responsibility to provide good end-of-life care. EPEC covers the range of decision making situations like communication of bad news, pain management, aproaches to deal with sudden critical illnss, medical futility, physician assisted suicide/euthanasia, withhold or withdrawl of life sustaining therapy, care of patients in the last hours of life, and those who are bereaved and related legal issues.

EPEC will make physicians learn the value of life and the dignity of a dying person. The ethics behind treating a life should be based on situations and places where the physician is practicing. We have the capabaility to influence people and should take the leadership role in end-of-life care.

It is obvious that EPEC is a distant dream in the Indian perspective, particularly in relation to terminally ill children. However, the need for this is becoming increasingly apparent and a beginning must be made soon. The Indian Academy of Pediatrics can play a lead role in this direction by creating awareness and instituting relevant training programs. The traditional culture of seeking alternative medicine offers a scope for innovative amalgamation in this direction.

The Project to Educate Physicians on End-of-life Care from the Institute for Ethics at the American Medical Association was a source of inspiration for this article. Special thanks to the EPEC team, the EPEC advisory Group, and all other contributors.

Sandeep Kumar Dey,
CA-147, Sector-I,
Salt Lake City,
Calcutta-64,
India.
E-mail: [email protected]