Ethical Challenges in End-of-Life Care Delivery in India

Supportive Voice Vol. 11 No. 1 Winter 2006

by Bridget Carney, PhD, RN

Ms. Carney is system director, ethics, PeaceHealth, Bellevue, WA.

In January 2005, I had the opportunity to travel to New Delhi and Patna, India, to collaborate with physicians, nurses, nursing faculty, and hospital administrators in the presentation of clinical and organizational ethics concepts and tools. During my one-month stay, I worked with three different hospitals, two Catholic and one Episcopal.

I entered a different health care world, of course. For example, at Holy Family Hospital in Patna, the capital of India's poorest state, the hospital laundry could be seen drying outside in the sun each day. In the hospital basement, where the pathology and lab departments were located, I found another clothesline filled with rubber gloves that had been cleaned and were drying for future use. When blood was needed for a patient with a diagnosis of placenta previa, the Jesuit priest at the hospital contacted his novices and asked them to come and donate blood.

Given these and other incidences, I naively assumed that the case studies my Indian colleagues would provide for discussion in our sessions would be focused on the problems of justice and the allocation of limited resources. However, these daily challenges did not present irresolvable ethical dilemmas. Rather, the ethical dilemmas used in our discussions centered on issues very familiar to us in the United States, that is, the disclosure of patient information to a patient or to a family member, establishing who is the decision-maker, patient autonomy, withdrawal of treatment, and provision of end-of-life care/hospice. The Indian cultural, religious, and socioeconomic context did shape the questions they asked and the solutions and plans of care they developed, however. At times their responses to certain cases were dissonant to the conclusions we might reach in our institutions in the United States, but at other times this difference was only a matter of degree.

As would be expected, the Indian cultural, religious, and socioeconomic context clearly affected the ethical choices made by the participants in the workshops that we provided. This context for deciding "what is the right thing to do" is changing in India, though, and what is shared here reflects some of this ongoing cultural transition. For example, in the United States and in India, we hold the same value of respect for human dignity but may express it differently.

In the United States, the presumption is that the patient is the decision-maker. When a diagnosis is made and the individual is found to have a life-threatening illness, the patient is informed so that he or she can decide what treatment and care is desired. In India, with its long history of a strong patriarchal culture, respect for dignity may be shown differently, according to my dialogue with clinicians, nursing faculty, and administrators in these three facilities. Often, it is the most senior male member of the family to whom a patient's diagnosis of a life-threatening illness (e.g. cancer) is first communicated, and it may be this person who makes treatment decisions. This then creates an ethical dilemma for some health care providers in cases where they must provide cancer treatment when the patient is not informed as to why the additional treatment is needed. So the provider is faced with the dilemma of how to communicate with the patient, telling him or her that it is a "growth," or that the tests were negative, or simply delaying in telling the patient until he or she specifically asks about the diagnosis. Although it is a common practice not to tell the patient his or her diagnosis directly or right away, there is a gradual shift occurring, as voiced by some of the clinicians and administrators suggesting that it would be better to tell the patient the diagnosis directly and let him or her make decisions about active treatment or palliative care.

Another area of ethical challenge for this group of clinicians and administrators is the issue of withdrawal of treatment and the provision of palliative and hospice care. The tendency in the facilities I visited was to treat a critically ill patient aggressively once a patient enters the hospital door. "If you did not want everything done, then why did you come to the hospital?" is a question asked by some physicians. From the family perspective, there is a cultural value of wanting to be able to say that they have done everything possible for their loved one no matter what the cost. Additionally, there is a fear of legal liability if a physician withdraws a ventilator and is accused by family or others of "killing the patient." All of these factors contribute to a tendency by some clinicians to overtreat patients with life-threatening illnesses. Further, when a decision is made to discontinue treatment, the resources for palliative care services in the hospital are very limited. If patients can afford to, they go to a hospice, or if they have AIDS, to a facility that cares for persons with AIDS. However, if a patient has multiple diagnoses (e.g. cancer and AIDS and leprosy), he or she will not be accepted either by the hospice or by the AIDS facility because of the multiple diagnoses. They are then limited to the resources they or their family can provide at home, assuming they have a home. Some homeless receive supportive care at Mother Teresa's home for the dying.

My colleagues in India acknowledged that there is a great need for further work in the area of withdrawal of treatment decision-making and in the provision of inpatient and community based palliative care and hospice services. For example, a newborn infant had a life-threatening diagnosis, and after much discussion with the neonatologist, the family agreed to withdraw ventilator support. They wanted to take their child home to die even though there were no hospice services in the community to support them at home. Within 24 hours of discharge, the infant was re-admitted and placed back on the ventilator because the family could not cope with the respiratory distress of their dying infant. The infant died a number of days later in the hospital following a gradual controlled withdrawal of ventilator support. Even though we have programs and resources in the United States that could have supported this family and prevented the re-admission, it is important to note that this scenario could easily take place in one of our communities in the United States as well.

I could provide many more examples of the ethical challenges faced by Indian clinicians and administrators in addressing the needs of patients with a life-threatening illness and their families. But what is most essential to understand is that whether in the United States or India, the same questions arise as to what is the ethical response in providing care to a patient and their family diagnosed with a life-threatening illness. Our cultural, religious, and socioeconomic context—which are never static in either culture-have a profound impact on how we decide what is the right treatment and what care to provide.