Mrs. P is a 72 year old woman suffering from a progressive neurologic
disease. There is no cure. She is no longer able to make decisions for herself.
She has recently lost the ability to swallow without choking. She has a large
supportive family, with her husband having formal power of attorney for personal
care. Mrs. P's care team has just offered the possibility of tube feeding
through a tube placed through the skin to reach the stomach. The family is
divided on whether this is a good idea. Mrs. P's husband turns to you and
asks, "What should we do?"
Why should we have a field of ethics, what has come to be known widely as
bioethics, in health care? Isn't what we have been doing good enough? We are caring people in caring institutions and
any talk of ethics actually just means more paperwork and time before decisions
actually get made. What is bioethics?
Ethics is the study of right and wrong and of how to live a good life. Bioethics
is a field of study that has grown and evolved over the past several thousand
years, starting with the medical Hippocratic Oath calling on physicians to
do no harm. It has developed in response to an increasingly pluralistic North American society as a way
to address difficult, and often conflicting, questions of values which arise
in health care. Bioethics is a part of a tradition in philosophy of ethics
that is attempting to approach ethics without relying on any particular religious
belief system.
Bioethics has developed dramatically in the past fifty years. The Doctor's
Trial at Nuremberg after the Second
World War brought to light terrible abuses in what was called medical research.
The infamous Tuskegee syphilis study sponsored by the U.S. Public Health Service
from 1932 to 1972 in which over four hundred African-American men were observed
for decades to see the natural course of syphilis, despite there existing
known safe and effective treatment for the disease. In Canada,
the coerced sterilization of those judged to be of low intelligence has been
in the national news recently as some of those individuals sterilized sought
legal compensation. The story of Sue Rodriguez brought the issues of end
of life care and euthanasia to the front page, as did Tracey Latimer's death.
The rapid advances in genetics have brought an entirely new set of ethical
dilemmas which we do not fully understand.
Bioethics has two aspects. It has evolved as a way to preserve and protect
the patient and family's capacity to make health care decisions. It has also
challenged everyone involved in health care, be they physicians, nurses, researchers,
allied health professionals, or administrators to examine themselves and their
approaches to patient care. Both these aspects are directly felt in our caring
for patients, as we shall see as we explore Mrs. P's family's dilemma.
For the past several decades bioethics has embraced four principles, which
have roots in traditional philosophy, organized by Beauchamp and Childress.
These have been found to be helpful in working through ethical problems and
are as follows:
1. autonomy: respect for the individual and his
or her choices, even, and perhaps especially, if they are not what the health
care team feels is a proper decision.
2. justice: the patient is treated fairly and
considered equally with regards to others in similar situations.
3. beneficence: to try and act in such a way to
improve the patient's health
4. non-malificence: to do no harm.
Recently, however, bioethicists have begun to place more emphasis on the role
of community in a particular patient's life and the formation of his or her
values. We have begun to realize how connected we are all to
each other, yet how unique individual care can be in particular instances.
What does this mean at the bedside?
A point has come in Mrs. P's care at which a difficult decision needs to
be made. What makes this decision difficult? In this case, Mrs. P. is unable
to articulate her own wishes and has a surrogate decision maker, her husband,
who, despite his own grieving at her devastating illness, has been called
upon to make a decision in an environment of family discord. Let us consider
the situation in light of our four principles.
Mr. P., as a surrogate decision-maker, has a difficult job. He is asked
to decide, not what he would necessarily like, but what, given his knowledge
of his wife's beliefs and values, she would decide. This is respecting Mrs.
P's autonomy. It will be important for the health care team to support Mr.
P, acknowledge the difficulty of the decision and to ensure that he does not
feel pressured by either the team or family. Often family meetings can be
helpful to provide all concerned with the same basic medical information and
to allow the decision-maker to feel supported by the health care team whichever
way he makes his or her decision.
Justice places responsibility on the health care team to ensure both that
Mr. P knows what others have done in similar situations, but also that he
has appropriate time and support to make a decision.
The concern of beneficence is for both Mrs. and Mr. P. Is it in Mrs. P's
best medical interest for a feeding tube to be placed? Is there a decision
which truly needs to be made at all? Does the team expect that she will actually
die relatively quickly and are we simply placing responsibility on Mr. P because
we, as the health care team, are avoiding addressing the fact that Mrs. P
is dying. If we are actually avoiding discussing the dying process, then
we are going against the principle of non-maleficence,
by causing great upheaval in Mr. P's emotional and spiritual life as he grapples
with questions that may not be relevant. This would also be taking him away
from supporting his wife in dying.
Bioethics provides a process to work through difficult ethical problems.
It attempts to both preserve a patient's ability to make decisions about his
or her care and to challenge health providers and researchers to question
their own perspectives and motivations. Bioethics is evolving as ethical
questions in care become more complex. As with Mrs. P, resolutions of particular
dilemmas will be unique, dependent as they are upon individual patient and
community values in a pluralistic society.
Dr. Mark Lachmann, Family Physician, Moose Factory,
Ontario, is currently a Fellow in the Care of the Elderly Program (2000-2001)
at St. Mary's on the Lake Hospital and Queen's University and a Graduate student
in Bioethics at the Joint Centre for Bioethics, University of Toronto.