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 unnaturally.

But, wait! I already signed Advanced Care Directives. How can they ignore them ?

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 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'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 Debate
Part Four: Patients Have Rights, But Doctors Have Rights, Too
Part Five:
The Pros and Cons of Physician Assisted Suicide

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