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Jan-Mar2002-10(1)
REPORT
The bioethics group of the Aga
Khan University, Karachi
Aamir M.
Jafarey
In recent years, the medical community the world
over has witnessed increasing emphasis being placed on the ethics of medical
practice. Both clinicians and researchers are now expected to be aware of and
work within defines ethical guidelines. For research involving human subjects,
it is becoming mandatory to get formal approval from institutional or national
ethical review committees to ensure that ethical standards are met. This is
becoming necessary to secure funding from agencies and also for acceptance for
publication in reputed scientific journals. In the clinical setting, hospitals,
patients and indeed physicians themselves are now looking towards ethics
consultation services and hospital/clinical ethics committees to help resolve
ethical and moral dilemmas emerging in the dispensation of health
care.
As a consequence of the recent increase in its
significance in clinical practice and research, bioethics has emerged as a part
of medical education both at the undergraduate and postgraduate levels through
much of the world. In Pakistan, at the Aga Khan University (AKU), Karachi,
bioethics has been a part of the undergraduate programme for over a decade.
Although AKU medical college graduates have had formal education in bioethics,
the majority of residents and faculty at this university, being graduates of
other institutions, have had no exposure to bioethics. Other health-care staff
like nurses also suffer from the same handicap.
Acknowledging this deficiency, a diverse group of
health care professionals at the Aga Khan University formed the Bioethics Group
(BG) in 1997. The motivating force behind the move was Dr Farhat Moazam, then
professor of surgery and the Associate Dean, Post Graduate Medical Education.
For some time, Dr Moazam had been highlighting ethical dilemmas
encountered in clinical practice. She encouraged the discussion of articles on
ethical issues in journal clubs, and brought out ethical aspects of care in
morbidity and mortality meetings and at ward rounds, thus informally raising
awareness of such issues among residents and faculty.
The original Bioethics Group, with Dr Moazam
as the Chair, drew its voluntary membership from the faculty of the medical and
nursing schools. Among its founding members were a surgeon, a physician, an
anesthesiologist, a clinical psychologist, a nursing instructor, a neonatologist
and a social scientist. Four years down the line, six of the members of the
original group are still serving on the group, while a lot of 'new blood' has
also been added.
The group had the following broad objectives: to
assist in providing education in health-care ethics to faculty, residents and
interns, and hospital staff; to conduct research on bioethical issues, and to
assist staff faced with ethical dilemmas in the decision-making
process.
The group has been convening on a fairly regular
basis at least twice a month for its two-hour luncheon meetings since it first
met on June 20, 1997. These meetings are used as opportunities for self
development as well as to plan activities to further the group's
objectives.
Self education
Since none of the members of the BG had any formal
training in bioethics, one of its priorities was, and still remains,
self-education. Time is set aside in each meeting to discuss an article or any
current issue highlighting an ethical dilemma and analysing it in light of the
principles of bioethics. At present the BG is reviewing research guidelines
formulated by the Council of International Organizations of Medical Sciences
(CIOMS), keeping the Third World perspective in mind. It is compiling a
catalogue of suggested changes to be sent to CIOMS for consideration in the
guidelines' ongoing revision. Such exercises have helped the group develop a
deeper understanding of research ethics in the context of the developing world.
At a more formal level, Dr. Moazam took a year's sabbatical in 1999 to obtain a
Master's in Bioethics at the University of Virginia at Charlottesville, VA,
USA.
Ethics Grand Rounds
Ethics Grand Rounds are a valuable educational
exercise for highlighting the principles of bioethics and raising awareness on
ethical issues. The BG introduced the rounds at the University in 1998. 'Death
with Dignity' was the catchy title of the first Grand Round. The audience was
given an opportunity to grapple with end-of-life decision making processes and
the issues at stake in such situations in this part of the world.
These Grand Rounds have become a regular feature
with participation from medical and nursing students, faculty, residents and
interns, nursing staff and the hospital administrators. The format is quite
interactive. A composite case is constructed from facts taken form an actual
clinical situation that had posed an ethical dilemma in the past. A resident
briefly presents the case to the audience. Following this presentation are talks
by two speakers, BG members or invited faculty, who take 15 minutes each to
bring out two usually conflicting views on the matter. The audience is then
invited to participate and usually an intense discussion ensues for the next
hour or so. A summation by the moderator wraps up the session. According to the
feedback received, audiences have found the case scenarios realistic and the
discussion useful and relevant. One parameter of these sessions' popularity is
the fact that various hospital departments cancel their regular teaching
sessions and meetings so that people can attend the Ethics Grand
Rounds.
List of Bioethics Grand Rounds: March 1998: Death
with dignity; May 1998: The critically-ill neonate: a right to live; August
1998: The patient with cancer: to disclose or not?; December 1998: Kidney for
sale; March 1999: Whose rights? confidentiality vs. the right to know; September
1999: Down's dilemma; December 1999: Whose life is it anyway?; March 2000:
Between the devil and the deep blue sea; August 2000: Research in the developing
world; March 2001: Consent: how informed is informed?; September 2001: "Doctor,
please don't tell my mother she has cancer!" The right to know vs the right to
say no.
Newsletter
The BG has been publishing a newsletter since July
1998. Evolved from a one-page photocopied version to a more formal 6-8 pager
printed format, the newsletter is circulated among the departments, faculty and
staff of AKU and also mailed to interested individuals outside the institution.
It contains news of upcoming events and reports on the BG's activities. The BG
encourages individuals to express their opinions on burning ethical issues and
controversies through the newsletter. The newsletter is funded by the Dean's
office and prepared entirely by BG members with no professional help in the
designing and publishing process. Without dedicated secretarial help, members
have often found it difficult to meet publishing deadlines with the result that
the newsletter has come out rather irregularly.
Ethics consults
One of the group's original objectives had been to
provide advice on moral issues encountered during patient management. As its
activities became well known, the BG found itself receiving more and more 'moral
queries'. Among the initial tasks was, and still remains, the screening out of
management issues or financial concerns which are perceived as 'ethical
dilemmas'. The BG received its first formal Ethics Consult in November 1999.
This consult concerned the management of an 18-year-old boy with Down's
Syndrome, irreversibly quadriplegic for several months and ventilator dependent.
His family wanted to disconnect him from the ventilator and take him home, while
the physician insisted that this was tantamount to murder. With no formal
experience in handling such consults, the group took on this as a challenge.
After several days of interviews and deliberations, it came up with advice that
was accepted by all parties involved in the conflict, including the family,
physician and hospital. In August 2001, a formal ethics consultation service was
started by the newly established Hospital Ethics Committee (HEC). Interestingly,
many HEC members dealing with ethics consults are also long-standing members of
the BG.
Capacity building
One of the logical outcomes of BG-related
activities by its members has been the development of individual capacities in
the field of bioethics. The group has effectively become the 'resource pool' of
bioethics for the University and for other institutions as well. Several of the
BG members serve on the Hospital Ethics Committee and on the Ethical Review
Committee. The University's curriculum committee has also asked BG members to
help in the incorporation of bioethics in the problem-based learning
modules.
Exporting bioethics
Other institutions have also expressed interest in
developing bioethics-related activities at their campuses in collaboration with
BG. One such institution is the Ziauddin Medical University (ZMU), Karachi. The
first combined Ethics Grand Round held at ZMU was a resounding success, and
other similar rounds are planned. BG is also interacting with ZMU to develop
their institutional guidelines for ethical research, and to establish their ERC.
A group of interested faculty is being formed at ZMU to carry on the work
independently. Similar projects are being discussed with other institutions
also.
National guidelines for ethical review of
research on human subjects
The BG, along with AKU's Ethical Review Committee,
organised a workshop on ethical issues of health research in developing
countries from July 22 to 27, 2001. There was close collaboration with the
Harvard School of Public Health, the Pakistan Medical Research Council (PMRC)
and the Indian Council of Medical Research. At the end of the workshop, one day
was devoted to deliberate upon forming ethical guidelines for Pakistan. A core
group formed from among the BG's members is now in the process of preparing a
draft of the proposed national guidelines which will be sent to the PMRC for
nationwide circulation and wider input. It is hoped that through this draft will
emerge the national guidelines.
The future
In the four years of its existence, BG has brought
about an appreciable change in the way people look at and handle ethical issues
in the clinical setting at AKU. It has evolved and implemented educational
strategies to raise the general awareness of bioethics among students,
health-care providers and the hospital administration. Its manpower and
experience have helped establish other ethics-related committees at the
institution. Finally, it has developed linkages with other institutions in the
city. Till now, the group has developed through self-education and 'on the job
training'. It is perhaps time to consider formal training in bioethics for its
members, towards establishing an indigenous bioethics programme at AKU. At
present all members of the BG are fully employed in other clinical,
administrative or academic activities; bioethics is a voluntary activity.
Perhaps in the future the BG could have permanent as well as part-time members
so that more ambitious projects could be taken on. If the University is ready to
commit itself in this direction, the BG could in fact be a forerunner of a
bioethics centre at the AKU in the foreseeable future.
Dr Aamir M. Jafarey, FCPS, FRCS. Lecturer, Department of Surgery, The Aga Khan University, PO Box 3500, Stadium Road, Karachi 748000, Pakistan. Email:aamirjafarey@hotmail.com