FEATURE
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or years where others have hours or days. Some have advanced
chronic medical problems or advanced age, but they are not dying
in the near future. They simply do not wish hospitalizations,
procedures or aggressive testing. They often do wish for ongoing
common-sense medical care with adjustments in diuretics,
treatment of acute infections and adjustments of other medications
to optimize their situation. Traditional medicine is coupled with
medications to relieve symptoms where warranted. Over time,
traditional medications decrease and comfort medications are
put in place. Palliative care is a practical approach to health care,
letting go of the emphasis on prevention and focusing instead on
the acute issues.
I evolved from an internist in an office to a champion of
palliative care. My personal story has been a piece of that evolution
because I experienced on a visceral level the burdens of treatment
and the value of compassion. Upon completion of my internal
medicine residency, I moved to a small town in central Louisiana
to fulfill an Air Force obligation. I had an Air Force scholarship for
medical school. My base was deployed to Saudi Arabia just after I
arrived, and I was one of a few practitioners left behind. For this
reason, when I, a physically fit distance runner, became acutely
short of breath over a few days, I read my own chest x-ray. I found
a large anterior mediastinal mass. Due to limited resources on the
base, I ended up at the local hospital for acute treatment.
I went in for a biopsy, expecting a diagnosis of lymphoma
and radiation therapy. I woke up on a ventilator with chest and
mediastinal tubes, having had the mass resected. I ultimately was
diagnosed with high grade non-Hodgkin’s lymphoma. During my
immediate post-op recovery, I was treated as if I were drug seeking
because I wanted 5mg of percocet q4 hours. I had numerous CAT
scans along the way. The oral contrast made me so nauseated that
even 27 years later, I still experience nausea at the thought of it.
High-dose prednisone was part of my treatment; I recall vividly
the profound akithesia it caused. I was not warned about what
to expect. My worst memory was acute delirium brought on by
Vincristine neuritis. Unfortunately, even though I was a physician,
my physicians did not always explain what was happening or what
to expect. I’m sure at times I was too ill to really understand or
focus. I was very lucky that I had a highly curable disease. From
this experience, I took away a great appreciation of the value of
compassion and honest information. I also gained awareness that
what may seem like a simple test or procedure to a physician may
be quite a burden to a frail and depleted patient. This episode in my
life caused me to rethink how to treat people who are vulnerable
and scared.
Compassionate care matters. Thinking about every test,
procedure or treatment we order, and what we expect the patient
to gain from them matters. If a test will not change the plan, then
why do it? When a medication is the twentieth or thirtieth pill a
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patient will take in a day, perhaps we should ask ourselves how we
think it will benefit the patient. If a frail and declining patient has
an acute event that theoretically requires a surgical procedure, it is
important to question whether the procedure will actually benefit
that particular patient. Really looking at an individual from the
point of view of cognitive and physical function, interaction,
engagement and recent level of function should factor in any
decision tree. Patients and families appreciate honesty about
whether a particular intervention is likely to be beneficial.
What decline and dying look like are very apparent to palliative
physicians, but perhaps not to all physicians. This, of course, factors
into what tests or procedures make sense. In palliative care, we
work hard to find the history of decline or how an individual has
been doing. We observe looking for engagement or withdrawal,
intake, recent weight loss, frequency of falls and cognition. How a
person is doing is not a CT scan result or lab, it is truly how are they
doing. Do they lie in bed 24 hours per day? Do they get dressed or
put on makeup? Do they stare through you or make eye contact?
Are they restless or delusional? How does current behavior relate
to baseline personality? These things take a minute to elucidate but
taking the time may save a patient from an expensive, burdensome
and futile procedure or medication. Every broken hip does not
benefit from surgery, and every bradyarrhythmia does not require
a pacemaker. Many patients and families want to “allow natural
death,” but sometimes we get too caught up in the pathology
before us to see the individual and ask the questions. This is the
focus of palliative care.
I often say, “Comfort care is not just an order in a chart.” Just
knowing how to write a morphine order does not make a palliative
physician. Palliative care is intensive care of vulnerable, frail people
facing terminal or life-limiting medical conditions. It requires
time, conversation and ongoing assessment and adjustments
in medication and care. Medication to control symptoms is one
facet and withdrawal of medication that is no longer beneficial is
another. Hospice care and care of the actively dying are a piece
of palliative care, and so is the care of individuals with moderate
to moderately advanced dementia or other neurodegenerative
diseases, or chronic lung, heart or liver disease who are still out
and about but who wish to allow natural death without pursuing
aggressive treatment.
Palliative care is the specialty meant to serve as a balance to our
specialty-oriented health care system. It is both emotionally and
time intensive as well as profoundly rewarding.
Dr. Cornett is the owner of Louisville Palliative Care LLC and is board
certified in internal medicine and palliative care.