For
most of my 25 years in medical practice, I have been involved in hospital
ethics committees. You may not know that ethics committees exist, or that there
are ethics consults in hospitals.
An
ethics committee is a group of people ranging from physicians to chaplains,
nurses, social workers, and sometimes community representatives who may meet to
develop policies on topics like end-of-life care or medical decision making. It
is easy to understand that conflict may arise, for example, when a patient is
unable to voice their desires and family members don’t agree; it is much harder
to devise or articulate a process toward a solution. Sometimes state or federal
law dictates a path; more often, a Solomon is needed to split the proverbial
baby. Hence, the Ethics Committee can be consulted to advise on a course of
action.
In
each institution I have been associated with, the Ethics Committee does not
decide which course of action to take. They merely facilitate discussion
between parties, advising on known statutes or regulations, and – more than
anything – making sure each party is hearing what the other is saying. Most
ethics consults end up being non-issues; once communication is clear between
parties, agreement on a course of action is often reached.
On
rare occasions, family members insist on care being provided or continued when,
from a medical standpoint, that care is considered futile (or, in PC-speak,
non-beneficial). This is a perfect example of #firstworldproblems. It was only
in the 1960s that coronary care units came into existence. Prior to that, death
in the home was the norm, with family at the bedside. With the advent of
intensive care, we have come to expect immortality in the Temple of Medicine.
As
reported in 2010 by PBS’s Frontline program Facing Death, nearly half of all
Americans die in a hospital (nearly 70% in a hospital, nursing home or
long-term-care facility), while 7 out of 10 Americans say they would prefer to
die at home. More than 80 percent of patients with chronic diseases say they
want to avoid hospitalization and intensive care when they are dying. Yet only
25% actually die at home. The difference between desire and actual care is
striking.
Why,
if we want a certain type of care, do we not get it? For one, we don’t
effectively make our wishes known. In that same Frontline series, only 20 to 30
percent of Americans report having an advance directive such as a living will.
And, even when patients have an advance directive, physicians are often unaware
of their patients' preferences.
The
default action in hospitals is to provide any and all care possible. Blame our
perverse incentive to do procedures, our desire to avoid litigation, and our misguided
belief that we can save everyone, and you get patients dying in the hospital
not even knowing they are at the end of life. It is this window where a
hospital Ethics Committee is most consulted.
In
my personal experience, the ethical conflicts that arise within a religious
context are the most frustrating. Some patients or families hold on to the
miracle cure lottery ticket, demanding care that is both ineffective and
injurious, afraid to let go of “faith”, as if death itself is under their
control.
That
type of faith – sincere as it may be – is nothing more than magical thinking that
binds God to the believer, making God not even a god, but a puppet. As Billy
Graham reportedly said, “Prayer is the rope that pulls God and man together.
But, it doesn't pull God down to us. It pulls us up to Him.”
In
healthcare, there is no “right” to expect or demand care that is not appropriate.
Physicians have an obligation to “first, do no harm”. This is nowhere more
important than at the end of life, where comfort care and quality of life are
paramount. To bridge this unnecessary divide, open and honest communication
between healthcare professionals, patients and family is key. When
communication breaks down, the Ethics Committee can help.
