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Neither hasten nor postpone death Daniel G. Murphy, MD MBA FACEP, Vice Chairman and Medical Director, Department of Emergency Medicine, Maimonides Medical Center; Member, New York ACEP Board of Directors Bridget Harte Logan, my
last surviving grandparent, died at the age of 90 last January. Weeks
earlier, she had been at Christmas dinner with her family. She looked
much thinner than usual and was bothered by many ailments, but she
was also fairly mobile and very well dressed and made up, as always.
She was very melancholy. She lamented how much she missed my deceased
grandfather, how she had “lived long enough”, and how “in
Ireland, the old folk just went to bed and didn’t get up again.”
She was driven back to her
assisted living facility. A few days later, she stopped eating and
drinking. She withered rapidly and died within a week. The wake and
funeral were crowded with her progeny. Many laughs and tears were
shared. Her death was dignified.
But 36 hours prior to her
demise she almost succumbed to the uncomfortable and technology driven
manner in which so many other elders die in America. On the day before
she died, my grandmother was transferred to a hospital and my mother
and aunts were challenged by various health professionals who stated
or inferred that naso-gastric tube and then PEG feedings, intravenous
hydration, and a venous ultrasound and heparin were the “right
thing to do.” Unfortunately, I too have been a participant in
this hospital-based “ritual” as an emergency physician. I was summoned by family
to her hospital room and discovered Nana in an obviously terminal
state. Her face was beyond gaunt. She had just been given an opiate
for the pain she was having in her legs and was somnolent. Under the
sheets I saw two porcelain white legs that were not perfused. Some
of her toes were deeply and darkly blue – this had happened over
the preceding day. Her breathing was slightly tachypneic yet not labored.
There was no urine output. Many systems were failing. It was the end.
Hours or days, who could be sure? I called my sister the nurse (on
a cell phone, forgive me) to spread the word. If anyone wanted to
visit, the time was now. It was then that the escort
came to bring her to ultrasound for venous and arterial studies of
her legs. I sent him away. Soon after that a nurse came in to insert
a nasogastric tube for feedings. I told her that I would talk to the
primary care physician and get the order cancelled. She seemed relieved
and in agreement. My aunts then told me how
a gastroenterologist had been there earlier in the morning and had
admonished them for delaying the decision for a PEG until I arrived.
He had said it was inhumane to withhold nutrition and hydration. They
acquiesced to a nasogastric tube but deferred the PEG decision to
me. After looking again at the face of my grandmother, I explained
to my aunts that the man might have had motives other than Nana’s
hydration and nutrition status. The primary care physician
arrived an hour later. He was a good guy. He immediately understood
that we wanted nothing done that would cause her discomfort or pain.
We accepted that she was dying soon. He agreed. When she died it was a peaceful
death in the company of her daughters, less than 24 hours after I
went home. She had some lucid moments during those 24 hours. I’m
told she even joked a little. My arrival and interventions
saved my grandmother unnecessary pain and suffering. It also saved
our healthcare system a lot of money. Why did so many good and well-intentioned
people not see that it was her time to die? During my most cynical moments
I think that the American healthcare system is designed to separate
elders from their direct assets and insurance reserves before they
die. The culture seems driven by an expectation that death should
always be postponed and invasive technology routinely utilized. After
being raised in this culture, families feel overwhelmed and guilty
if they choose not to be aggressive. The result is a default pathway,
often involving emergency departments, that is undignified, uncomfortable
and fiscally unsustainable. We need to reconsider how
we die in America. We need to die better, with our families, perhaps
at home, with no one doing chest compressions and no one putting a
tube down our throat. Hand holding, praying, crying and feeling is
much better. We need a major culture change that implements better
end-of-life education and better communication. I know the following: a)
more of my patients are very close to or at the end of life, b) emergency
departments and hospitals are horrible places to spend the end of
one’s life and c) we do a poor job of caring for patients and
guiding families at the end of life. We need to help identify that
point in a person’s (person, not patient) life where there is
more value and reward in focusing on end-of-life planning, comfort,
dignity, family and ritual. Life is a terminal condition. Palliative
care is a desirable choice for almost all people at some point prior
to death, whether it is hours, days, weeks or months before their
final breath. In the July-August 2003 SAEM newsletter, Drs. Quest
and Abbott summarized the World Health Organizations definition of
palliative care 1: Some of us are comfortable
with impending death only when paperwork is current and pristine.
The documentation includes ‘do not resuscitate’, ‘do
not intubate’, other advanced directives, living wills and health
care proxies. Is the need for certified and current paperwork reflecting
some difficulty to connect with our patients at the humane and primary
care levels? Do we fail to see the forest, only some frustrating tree,
confounded and intimidated by medico-legal risk? As Mildred Solomon, EdD
2 and Linda Kristjanson, PhD 3 explain of the Australian healthcare
system, “Long-term relationships between general practitioners,
patients and families, coupled with the existence of palliative care
services, solve many of the communication problems that, in the United
States, advance care directives are intended to ameliorate. Once the
decision to accept palliative care is made, people accept that certain
things won’t happen, the resuscitation matter dissolves, and
patient, family and health care team address each end-of-life question,
such as tube feedings or the use of antibiotics, as these issues arise.”
Kristjanson continues, “You know your patient, the relationship
is very individualized, thus an advanced directive would be seen as
a legalistic document that would be incongruent in the context of
the relationship.” Such holistic, generalist,
and humane approaches are unusual in my corner of the United States.
Too many elders have a neurologist, cardiologist, podiatrist, cardiothoracic
surgeon and dermatologist, but no one who takes responsibility for
the person instead of an organ system. I also witness nursing home
admission procedures where patient-physician relationships that have
endured decades are terminated just as end-of-life planning is most
crucial. As long as our federal healthcare
reimbursement model encourages procedures (including PEGs) instead
of humane and general care, poorly integrated, intrusive and wastefully
expensive end-of-life care will predominate. Form will follow finance. Nana Logan died well. But
my family could have done it so much better. Keeping her away from
a hospital would have been the most obvious opportunity for improvement,
but is easier said than done – even for a family laden with health
care professionals. I believe that there is
a vast unmet demand for quality end-of-life care and services. I also
believe that this demand offers an opportunity to improve the way
we die in America as it decreases wasteful spending that weakens our
nation’s healthcare infrastructure. This opportunity may grow
more compelling in the coming decade. 1 Quest TE and Abbott J
for the SAEM Ethics Committee: Palliative Care and the Emergency Physician:
Finding our Way. The SAEM Newsletter XV(4): 14, July-August 2003.
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