This article is part of our July 2014 issue, Human Rights and Health
By Bebe Loff
I was given the rather wide brief of writing a short article on health and human rights. Since this has been the entire focus of my work for the last 20 years, deciding upon an issue to write about has been no mean feat. What I have settled on is a discussion of the application of internationally accepted principles of medical ethics as they apply in contexts that differ in terms of culture, religion, governance and access to resources.
Perhaps, somewhat oddly for a rights person, I will argue that patient rights are relative and are not well captured by a reductive focus on autonomy or patient self determination demanded by these accepted standards. I will begin this discussion with a focus on autonomy, or the principle of “respect for autonomy.” This idea is central to both medical ethics and human rights.
In 2000 the United Nations Committee on Economic, Social and Cultural Rights produced a document entitled “General Comment 14, The right to the highest attainable standard of health.”[i] As the title implies this document is intended to provide some guidance on the content of the right to health contained in article 12 of the International Covenant on Economic, Social and Cultural Rights. In discussing the standards promoted by article 12, the General Comment states
Acceptability. All health facilities, goods and services must be respectful of medical ethics and culturally appropriate, i.e. respectful of the culture of individuals, minorities, peoples and communities, sensitive to gender and life-cycle requirements, as well as being designed to respect confidentiality and improve the health status of those concerned.
What does it mean to both respect medical ethics and be culturally appropriate? When medical ethics is taught to medical students it is often done in a formulaic manner. Medical ethics is reduced to a set of principles and these principles are applied to case studies, which are then discussed. The principles are
- Respect for autonomy
- Beneficence (do good)
- Non-maleficence (do no harm)
Why it should necessary to have guidance that states one should do no harm may not be immediately obvious. That it needs saying at all might seem concerning until the historic context of the principles is understood. These principles derive not from a medical treatment setting, as one might expect, but from travesties that occurred in the name of medical research during the Second World War and subsequently. I will not repeat that history here.[ii] The important point is that the application of these principles to clinical practice was not necessarily a matter in the minds of the creators of this guidance. This is most easily appreciated when trying to figure out what justice might mean when it is applied to the intimate relationship between a doctor and a patient. It is immediately necessary to move beyond that primary relationship to give the concept of justice meaning.
Respect for autonomy in medical ethics is realised through the practice of obtaining the informed consent of the patient for any treatment or procedure – and some add through doctor patient confidentiality. The precise content of informed consent has been and remains a matter of some controversy. However informed consent is generally taken to mean that a requisite amount of information has been conveyed to a competent patient who understands what has been said and voluntarily decides whether or not to undertake a particular treatment path. The involvement of others beyond those necessary to provide the treatment, such as friends or family, is a matter of patient choice.
I would like to suggest that this model of informed consent relies upon certain conditions being present. Most critically, it relies on health care being relatively accessible and affordable. It relies on a particular understanding of familial relations, in which intellectually competent adult family members are reasonably able to make independent decisions about which health problems are of sufficient importance to merit household expenditure. It also relies on doctors being free to describe options available to patients without fear of adverse personal repercussions. Yet these conditions are not uniformly present in much of the world. I will focus the remainder of this discussion on health and medical practice in India.
According to the World Health Organization, less than 15 per cent of India’s 1.2 billion people have any form of government or private health insurance. Out of pocket payment is the main source of health funding, and paying for health care is a significant cause of family indebtedness.[iii] According to a 2013 Oxfam briefing paper entitled “Universal Health Coverage: Why health insurance schemes are leaving the poor behind”, the Indian Government’s Rashtriya Swasthya Bima Yojana, (a health insurance scheme for those below the poverty line)
offers limited financial protection, suffers from corruption, abuse, cost escalation, and has skewed public resources to curative rather than preventative care.[iv]
For rural families for whom indebted status may be generational,[v] [vi] the additional (unproductive) indebtedness arising from costs of treatment for catastrophic health events may be a contributing factor to the high rate of farmer suicides.
There are factors beyond expense that must be considered if the doctor patient relationship in India is to be properly understood. I will describe some of these, though this will not be a comprehensive overview.
In 2006 the Indian Journal of Medical Ethics published an article[vii] and editorial[viii] asking why Indian doctors are being beaten up. In Mumbai resident doctors had gone on strike after one of them was attacked by the relative of a patient. Such attacks have become an increasingly common phenomenon (not just in India[ix]). Several reasons are proffered in explanation. They include the overcrowding in public hospitals which may mean patients are denied admission and others, though admitted, are not treated; non-existent or inadequate facilities, equipment, linen, and drugs; absenteeism by disillusioned and unhappy staff alongside general staff shortages; and doctor rudeness.
Families are expected to provide basic care for their ill relatives and purchase supplies from private pharmacies when hospital supplies run out. However there are no facilities available for families to wash rest or eat. Madhiwalla and Roy conducted interviews with staff and patients from three hospitals in Mumbai. They describe the public hospital environment:
Many patients come to public hospitals desperate for help. A casualty officer noted that patients are often referred to a government service after having spent most of their money in private hospitals. Private hospitals wishing to rid themselves of a bankrupt patient may have told the relatives that the patient is critically ill and should be rushed to a teaching hospital. This is their last resort and they want something done immediately. They may not be convinced by a casualty medical officer’s opinion that there is no emergency …
Nurses and doctors are compelled to do jobs like crowd management, pushing trolleys, getting drugs and equipment and escorting patients between departments. This affects their interaction with patients. They also feel that such work reduces their status in the eyes of the relatives. It does not help that residents are bullied by ward staff who view them as novices. The stress is compounded by the environment of the outpatient department, where crowds of patients, each pushing case papers to get the doctor’s attention, surround doctors and nurses. If Class IV staff is absent there is no system to manage the stream of patients.[x]
The sudden and unexpected death of a patient is known to trigger violent responses from families. Senior doctors are often not present. They rush to complete public hospital duties, preferring to spend time in better-remunerated private practice. This means that it is often the responsibility of the over-worked, underpaid and bullied junior doctor to advise the family. Advice from a junior doctor (perceived as being of low status) that a family member has died is often poorly delivered and equally poorly received. Overall, a visit to the doctor in India is likely to be fraught with complexity.
So does all of this have any implications for the application of “universal” bioethical principles like informed consent and confidentiality? I would argue that it does. If the purpose of medical ethics is to provide guidance to doctors about how they ought to behave, it is patently absurd to say to the Indian doctor that s/he must pay attention only to the patient’s wishes regarding treatment and not the patient’s family or other factors. Attention to the family is required, not only with respect to patient treatment, but also as a means by which revenge attacks might be prevented. (However doctors may not wish to describe the reality of adverse outcomes in too much detail. Patients may attribute the cause of adverse outcomes as lack of capacity on the part of the doctor. This may tarnish the doctor’s reputation and result in a drop in number of private patients wishing to see him/her.)
It could perhaps be argued that as the patient consents to have the family present, there is no breach of universal standards. This implies that patients are able to make a voluntary choice about whether or not the family should be present. In the circumstances just described this would have to be an extremely loose application of the idea of voluntariness. In truth, I would assert that teaching normative medical ethics only in these settings is insufficient. There is little material that addresses ethical approaches to working with families in circumstances like this, even though this is what many doctors will confront.
For example, is it ethical for the doctor to describe all potential treatment options when the family cannot afford them, and what is the doctor to do if the family abandons the patient because the patient is diagnosed with a stigmatized disease or the because family cannot continue to look after the patient? What is the doctor to do if it is clear that the family is not acting in the best interests of the patient even though they have the means to do so?
By relying solely on our universal standards we are failing both doctors and patients. Perhaps we need to re-visit our thinking about autonomy and consent and the importance we assign to it in the doctor patient interaction in any country. British philosopher Onora O’Neill has much to say about autonomy, consent and the role played by trust in professional relationships. Her work[xi]does not rely on cross-cultural comparison and I highly recommended it to any person interested in these ideas.
Associate Professor Bebe Loff is Director of the Michael Kirby Centre for Public Health and Human Rights in the School of Public Health and Preventive Medicine at Monash University. She has worked in various capacities for agencies including the World Health Organization, the Office of the High Commissioner for Human Rights and UNAIDS.
[i] General Comment 14, The right to the highest attainable standard of health. (Twenty-second session, 2000), U.N. Doc. E/C.12/2000/4 (2000).
[ii] War Crimes and Medical Science BMJ 1996; 313: 1413.
[iv] Universal Health Coverage: Why health insurance schemes are leaving the poor behind. 176 Oxfam Briefing Paper, 9 October 2103, page 3
[v] Manoj Mohanan, Causal Effects of Health Shocks on Consumption and Debt: Quasi-Experimental Evidence from Bus Accident Injuries. Review of Economics and Statistics, May 2013, Vol. 95, No. 2 , pages 673-681
[vi] Khurshid Alam, Ajay Mahal. (2014) Economic impacts of health shocks on households in low and middle income countries: a review of the literature. Globalization and Health 10:121. Online publication date: 1-Jan-2014.
[vii] Neha Madhiwalla, Nobhojit Roy. Assaults on public hospital staff by patients and their relatives: an inquiry. Indian Journal of Medical Ethics Vol 3, No 2 (2006): 51- 54
[viii] George Thomas. Junior doctors, strikes and patient care in public hospitals. Indian Journal of Medical Ethics Vol 3, No 2 (2006): 44-45
[ix] Bridget; Van, Cassandra; Cong, Yali; Rashid, Harun; Kumar, Nandini; Ahmad, Aasim; Upshur, Ross; Loff, Bebe. Perspectives from South and East Asia on Clinical and Research Ethics: A Literature Review. Journal of Empirical Research on Human Research Ethics 9.2 (Apr 2014): 52-67.
[x] Neha Madhiwalla, Nobhojit Roy. Assaults on public hospital staff by patients and their relatives: an inquiry. Indian Journal of Medical Ethics Vol 3, No 2 (2006): 51- 54 at pp51