Cynthia was a 55 year old mother of three boys age 15, 13 and 11. She had been
separated from her husband of 20 years for 8 months, but not divorced. Her
husband had a new girlfriend that needless to say, Cynthia’s parents, both still
alive and fully functionally did not approve of. Cynthia was at work when she
complained of a severe headache and moments later collapsed. Her co-workers
called 911 and Cynthia was rushed to the local hospital where it was discovered
she had suffered from a massive stroke, was non-responsive, on a ventilator and
would most likely never make a ‘meaningful recovery’.
I wish I could say situations like this were rare, but through my time as a critical
care nurse situations with similar core pieces were a daily part of the intensive
care. While we struggle to help people survive their critical care encounters from a
medical standpoint, many times the larger struggle is getting families and the
people that love the patient to fully understand the situation and make decisions in
the best interest of the loved one.
Unfortunately, Cynthia’s family, overwhelmed by this sudden life changing event in
their life could not agree on what was in Cynthia’s best interest. Emotional issues,
anger over current personal decisions overshadowed what was most important and
that was the lovely woman lying in her hospital bed vulnerable to the one’s who
love her to make the best decision for her life. Like many, no discussions had
occurred in this family, let alone actual advanced directives that could have
alleviated these painful decisions that needed to be made and the intense debate
that followed. Legally, her husband was still the person recognized to make
decisions or Cynthia. Next, were her children and then her parents. This did not sit
well with anyone involved in her life.
Most hospitals or physicians will not make decisions (i.e. to remove life support)
unless there is a clear directive pre-written by the patient or a unanimous
agreement within the family – very difficult to achieve. After a month of careful and
constant discussion, the decision whether to remove life support from Cynthia and
allow her to pass in comfort was taken to the ethics committee. In the end, Cynthia,
with her children and parents at her bedside, was removed from her breathing
machine and passed away peacefully and quickly.
During the almost 15 years I spent caring for patients and families at the bedside in
the critical care unit one of the most intimate and important aspects of my role was
to serve as an advocate help families understand their loved one’s illness or
situation and empower them to honor their wishes.
In the last few months we have all heard politicians linking advanced directive
planning to "Death Panels" that will attempt to ration health care. This could be
farther from the truth. The truth is, everyone, regardless of the current health
situation, should be having that discussion not only with their primary care
providers, but most importantly the people that care or love them.
What is almost more important than the actual papers indicating end of life wishes,
i.e. ‘advanced directives’ is the discussion that should be occurring in families
regarding this very personal time of life – end of life or if a catastrophic event
should occur where quality of life issues arise.
Over the years I personally facilitated discussions like this at the bedside with
families and when to intense for families to ‘agree’ participated in ethics committee
meetings where individuals from all disciplines (MD, nurse, chaplain, family
members, etc) met to try to come to an agreement of what was in a patient’s best
When illness consumes a family or some unforeseen, sudden catastrophic event
occurs many people are overwhelmed with stress and emotion. This is the worst
time to try to make clear decisions that honor a loved one. Many families find
themselves in a swirl of unfamiliar words, concepts and equipment and feel
paralyzed by the enormity of the situation.
Advanced directives by definition tells your doctor what kind of care you would like
to have if you become unable to make medical decisions (if you are in a coma, for
example) (American Academy of Family Physicians, 2009). These papers are to be
written by the patient either with the assistance of the doctor, lawyer or
independently, notarized and copies be provided to your family and primary care
provider. In addition, I would recommend that these papers be kept somewhere
quickly accessible in the case of an emergency along with an up to date copy of
your medical history, contact information, emergency contact information and
documentation of insurance (if applicable).
Of all the gifts you can give yourself and your family, let it be the peace of mind you
have an organized medical history, clear end of life wishes documented in the
event something catastrophic should occur and most importantly, have the
discussion with your loved ones on what you wish for one of the most precious,
intimate times of your life.
Join me and invite others to come and hear more about the importance of
discussing and creating these important documents.
Advanced Directives and Organizing Your Health
Articles & Facts
From The Center: Natural Health Specialists
*Article submitted by Victoria Takei, MSN with The Center:
Natural Health Specialists.