Ethical Issues in Terminal Health Care
Advanced Care Directives & the Right to Die
By Shirley Eileen Fitzgerald, RN
Aside from the perennial insurance reimbursement and abortion issues, these
are perhaps the two most controversial and least understood healthcare issues
facing medical professionals today. As a Registered Nurse, for nearly 20
years now, I have always considered it an honor when a patient feels adequately
comfortable to die peacefully and naturally in my care.
Recently however, I found myself facing allegations that I had "euthanized"
a patient. I was both personally and professionally devastated as I realized
that I could actually be facing murder charges in addition to the loss of
my license to practice as a Registered Nurse. The fact that these allegations
were false made little difference. I was still faced with the expense of
hiring an attorney and suspension without pay during the "investigation"
in a state where voters have reaffirmed the Right to Die. I was fortunate
that independent witnesses including family members apparently came forward
and supported me...I had followed MD orders in an attempt to provide adequate
pain relief to a young woman with terminal cancer. Moreover, she did not
even die until more than two days after the last shift in which I cared
for her, but I was still being accused of murder.
Nursing school taught me that death was as much a part of life as birth.
We learned to respect the quality of human life and to alleviate pain whenever
possible. I have never hastened a patient's death, but I feel it is my duty
to offer as much pain relief as possible to those that are dying. In my
role as a patient advocate, many doctors have heard my plea for additional
pain medication followed by the logic that given a terminal diagnosis we
need not withhold it for fear of "addiction". And many family
members wringing their hands in grief at the bedside of a critically ill
patient have heard my plea that they unite in a decision to not prolong
a patient's agony with life supporting ventilator equipment, electrical
shocks, and drugs.
Those of you reading this have probably already done some serious soul searching
on these issues. Many of you may have already completed and signed Advance
Care Directives in the presence of witnesses. Unfortunately, although we
are legally given the right to issue Advance Care Directives, there is no
mechanism to ensure that they will be followed. For your doctor to ignore
your wishes is not a crime. Your survivors may ultimately be able to pursue
civil monetary damages for the horrendous medical bills incurred and possibly
damages for unnecessary pain and suffering. Nothing can reverse the many
days and nights of agony as you wait to die from an infection because a
ventilator is breathing for you and a pacemaker keeps your heart beating
But, wait! I already signed Advanced Care Directives. How can they ignore
Theory and reality clash on this point. Theoretically, you have directed
that in the event your heart stops beating it is not to be restarted by
electrical shock. In reality, your wishes only become effective if your
medical doctor writes the words "NO CODE" or "DO NOT RESUSCITATE"
on your chart and everyone on your healthcare team abides by that order.
If that order is not properly processed and the oncoming shift does not
get word of it in report, it may not be followed. If any one of your relatives
comes to your bedside and objects to the "NO CODE" order most
doctors will rescind it for fear of being sued. If you elect to have surgery,
most surgeons will not operate unless you agree to rescind your "NO
CODE" request for at least 72 hours post-operatively. Sadly the motivation
for this is at least in part related to insurance and medicare reimbursement
guidelines which deny surgery to terminal patients except under very limited
conditions. Another sad reality of a CODE is that we can only, at best,
bring back that which we had before the CODE began...If Grandma was dying
of congestive heart failure before the CODE, she will still suffer from
it after a successful CODE. CODES will not cure Alzheimer's Disease or Chronic
Obstructive Pulmonary Disease either...it will simply prolong the time it
takes to ultimately die from these diseases and in most cases with considerable
pain in the process.
So there you are, Advanced Care Directives in place, breathing on a ventilator
against your wishes with tubes and equipment in every imaginable orifice,
in considerable pain and you write on the notepad, "I want to die!"
(Don't even think of pulling your breathing tube or IV's out...you're already
tied down by both wrists according to "ventilator protocol") Of
course, the doctor will now sense that you are depressed and not in your
right mind. He will order both psychiatric and social work consults to support
his position and you will still be on the ventilator waiting for the ultimate
antibiotic resistant infection to bring mercy upon you and let you die.
Maybe you were lucky and your family didn't panic and take you to the hospital
as you slowly lost consciousness in your progression toward a peaceful death.
As you take your final natural breath, however a younger family member panics
and calls "911." Paramedics rush in, shock your heart and force
you to breathe with an ambu bag. You may or may not regain consciousness,
but that will not matter because you are now on full life support in the
critical care unit of your local hospital.
But there is also a third and more complex way to die with Advanced Care
Directives in place. Consider the situation where the nurses are alert enough
to get orders for vasopressors, diuretics, cardiotonics, exotic antibiotics,
fluid resuscitation, blood product replacements and total parenteral nutrition
to keep you "alive" with nearly the same number of tubes, invasive
lines, catheters and monitoring equipment without ever calling a "CODE".
Since no one has actually called a "CODE", the MD order for "NO
CODE" has been followed. The hospital bill is rapidly accumulating
by the hundreds of thousands of dollars and you are tied up in a hospital
bed that you had never intended to occupy. Eventually your body will become
resistant to the medications, your kidneys and liver will fail and/or you
will acquire a resistant infection from which you will not be able to recover.
So, what is the solution ?
Vast amounts of health care dollars are being wasted daily keeping patients
"alive" on machines they specifically ordered not be used. The
United States Constitution prohibits "cruel and unusual punishment."
Nurses can not honor Advanced Care Directives without a supporting MD order.
Nurses can only withhold CPR and life support with an MD order to do so.
Paramedics are required to assume that the Advanced Care Directives have
been rescinded based upon the call to "911."
It would seem like we already have more than enough laws on the books to
last a life
time, but perhaps we need just one more. Perhaps we need a law to make it
a crime for a medical doctor or other health care professional to ignore
Advanced Care Directives. Or better yet, perhaps we just need to go back
in time about 20 years to the point where the only people even considered
for life support were healthy young (under 65) accident and heart attack
victims. But most of all, I feel we need to educate ourselves and our families
with respect to death and our wishes. As a healthcare professional, I encourage
my colleagues daily to communicate with their patients and families about
lifesupport, advanced care issues and the realities of "CODES".
As a patient advocate, I will support your wishes whenever I am legally
able as long as you make your wishes known to me. Please help me educate
others as to the realities of life support in order that we may together
ensure happy endings for each other and those within our care.
Any information in this article pertaining to legal or medical matters
is not to be construed as professional advice. Copyrights remain the property
of the authors.
ABOUT THIS AUTHOR: Shirley Eileen Fitzgerald is a Registered Nurse with
18 years of experience including oncology, critical care, trauma, geriatric
and long term care nursing. For more information you may
visit her website.
Part One: Issues and Their Implications
Part Two: Ethics Committees
Part Three: Local Perpsectives on the Right-to-Die
Part Four: Patients Have Rights, But Doctors Have Rights,
Part Five: The Pros and Cons of Physician Assisted
Back to Main Page
Back to Ed's Home Page