Home
Current Issue
Past Issues
Support
About IJME
Jan-Mar2003-11(1)
BOOK REVIEW
Behind the tough decisions
Meenal B
Mamdani
First, do no harm.By Lisa Belkin,Simon and Schuster, New York 1993.ISBN 0-671-68538-4.
Lisa Belkin, a reporter for the New York Times,
spent three years observing the ethics committee in a large private hospital in
the US. The hospital cares for adults and children but her focus in this book is
on the world of the ill children, the difficult choices their parents and the
medical staff face in taking care of these children and how the ethics committee
interacts with both to help them arrive at decisions.
Difficult dilemmas As Ms Belkin writes, ethics
committees are a recent phenomenon. It is only in the last two or three decades
that medical progress has provided choices to both patients and doctors. Before
that time, medical or surgical treatment could not prolong life sufficiently to
require decisions to continue treatment or not. As technology now allows
premature babies and children with chronic, debilitating illnesses to live on
seemingly forever, we are confronted with difficult dilemmas. Will the baby have
a meaningful quality of life? Who will provide ongoing care for a completely
paralysed young man? Who will bear the cost of enormously expensive drugs,
surgical procedures and hospital stay? What if patients or caretakers want
everything done when the prognosis is hopeless - or what if they want to give up
too soon?
With permission from the patients and the medical
staff, the book describes a few cases in detail. What come through are the
anguish, helplessness, uncertainty and eventually emotional and physical
exhaustion of the parents. The author is equally good at describing the
uncertainties inherent in medical science that doctors face daily as they make,
and help parents make, life and death decisions, and the toll that this takes on
the doctors' and nurses' psyches. It has become fashionable to blame doctors or
hospital administrators for denying care that some patients see as their
fundamental right. This book shows how society has left these people to take the
heat while the policymakers, legislators, and insurers move ever so slowly to
keep up with the complexities of today's health care.
Ms Belkin describes how the first ethics committee
was formed at this hospital at the insistence of the hospital chaplain. Chaired
by the chief of nursing, the membership has gradually expanded to bring in
people from different disciplines with an attempt to provide scientific and
emotional balance. The committee also includes persons outside the hospital
staff, in this case, former patients or patient relatives/friends. The committee
has policy meetings and also case consultations. The last was unusual at the
time the book was written but is fairly standard now at all hospitals that have
ethics committees.
Anyone can ask the committee to consult on a case
where they feel that the patient's care is being compromised. It could be a
doctor, a nurse, a medical social worker, patient or patient's family. It could
even be a rank outsider, though this is very rare. Once the committee convenes,
the person requesting the consultation is asked to tell the group why she/he
feel that the care is less than optimal, either too little or too much. Usually
the family members who have requested the meeting attend as a group. The
patient, too, is welcome but often too sick to participate. After the
information is given, the family leaves the room while the group deliberates.
Privacy allows members of the group to give their opinions without worry about
hurting the family's feelings or fear of repercussions. Then the family returns
to hear the group's decision which is never binding; it is merely advice that
they are free to reject. The opinion of the group is explained without medical
jargon and the family is not under any pressure to make quick, irrevocable
decisions.
Despite such support and extensive discussion, the
decisions are still very hard. The parties involved are often in two minds about
whether they have made the right decision. It is therefore not surprising that
in the concluding section where Ms Belkin describes the consequences, several
decisions appear in retrospect to have not produced the desired outcome. Yet she
describes how different people cope with these. Life goes on
No saints, no villains I found this book very
touching and also very informative. It describes the complicated interactions
that take place in a hospital between the patients, their caretakers, and the
medical staff without trying to ascribe blame. There are no saints and no
villains. Contrary to popular stereotypes, patients and their caretakers can be
manipulative, excessively demanding and just plain 'pain in the ass'; hospital
administrators can be caring and strive to bend rules to benefit patients;
medical staff can be so emotionally attached to their patients as to almost
become surrogates for them, while others maintain a professional but distant
attitude.
Ethics committees are not common in Indian
hospitals. Whether you are already a member of an ethics committee or are
thinking of setting up one, this little book will give you valuable insight into
the establishment and running of an ethics committee in a general hospital.
Meenal B Mamdani, Retired Neurologist, VA Hospital,
Hines, IL 60141 USA. Email:mmamdani@attbi.com