by Dennis S. Pacl, MD
In my hospital-based practice of
Palliative Medicine I am often
explaining my specialty to patients,
families and even colleagues. It doesn’t
fit nicely into an organ system. I can’t
say I am a heart specialist or kidney
specialist. A pulmonary doc once
explained to me that they always try to “stay in my organ.” While to me it
sounded a bit odd to hear, I can understand
the respect conveyed for the
expertise of other specialists who may
be involved with a patient’s care.
After giving that statement a lot of
thought, the best approximation that I
could come up with for my specialty is
that the organ of focus for Palliative
Medicine is the soul. Easing the pain
requires an understanding of the personal
experience of chronic disease for
that individual with the diagnosis and
the families who care for them.
The goal of palliative care is to prevent
and relieve suffering and to support
the best possible quality of life
for patients and their families, regardless
of the stage of the disease or the
need for other therapies. Palliative
care is both a philosophy of care and
an organized, highly structured system
for delivering care. Palliative care
expands traditional disease-model
medical treatments to include the
goals of enhancing quality of life for
patient and family, optimizing function,
helping with decision-making
and providing opportunities for personal
growth. As such, it can be delivered
concurrently with life-prolonging
care or as the main focus of care.
Board certification in Palliative
Medicine requires expertise in the
management of pain and non-pain
symptoms (i.e. nausea, dyspnea, constipation,
etc.). Excellent communication
skills and extensive experience
with collegial interdisciplinary care
coordination are paramount for effective
relief of suffering.
An important principle in easing the
burden of advancing illness is the concept
of “total pain,” which is a model
that views the overall burden of illness
in four major domains. The domains
include the physical effects of illness,
pain and other symptoms. Secondly,
the diagnosis of a life-limiting illness
usually results in suffering within the
social domain. One may feel marginalized,
no longer be able to hold down a
full time job or maintain active relationships
with friends and colleagues.
The feeling is one of no longer being
relevant. Chronic illness will also create
a strain on our families and loved
ones due to changing roles or a variety
of other factors, which leads to conflict
or distress in the interpersonal
domain. A fatal illness in a child carries
with it an exceedingly high divorce
rate, for example. Last, but certainly
not the least, is the effect of disabling
disease and life-limiting illness in the
spiritual domain. Not just questioning
one’s faith in God (Why me Lord?),
but more importantly it leads to questions
about purpose and meaning in
life…existential questions.
By recognizing the experience of the
disease for your patient, it is possible
to heal relationships, help patients
identify true purpose and meaning in
their lives and ease the burden of
advancing illness. Intractable symptoms
may no longer be so intractable. I
often tell patients and families that
treating pain and physical symptoms is
really the easy part. Improving the
experience for all who are affected by a
loved one with serious illness and disabling
disease is quite a bit harder, for
it takes a lot of time and effort to
understand the patient experience. But
when done well, I can’t imagine a
more gratifying clinical outcome.
