Palliative
care and hospice are deeply misunderstood
concepts. And not just by lay persons.
Students of traditional medicine have
been trained to cure: with medication
or surgery. Healing has been felt to
be synonymous with the stamping out
of disease. I do remember being taught
to “treat the patient and not
the X-ray”. But I do not recall
being taught to palliate and cure, just
cure. And if I could not cure, I was
only entitled to drown myself in a quick
mental browbeating, a self-flagellation
and a very private depression.
Palliative Medicine encompasses care
when cure is not possible. Hospice is
care of the terminally ill. Medicine
has evolved through the ages and despite
rapid advances and amazing surgical
techniques, death has not been beaten.
Hospice and Palliative Medicine are
now sciences with their own standards
of practice and research.
Preparing for Palliative Care Medical
Directorship at St. Vincent Mercy Medical
Center, I read a wonderful foreword
in a book that said that “all
care should be like palliative care”.
The medical establishment, like an unwieldy
giant, is slowly realizing the accuracy
and importance of this premise. Many
of its practitioners are unfortunately
still stuck in the God-complex of cure
alone.
One of the misconceptions is that palliative
care applies only to the one with cancer.
Statistics in the Palliative Care Unit
at St. Vincent Mercy Medical Center
reveal that COPD (chronic obstructive
pulmonary disease, or chronic bronchitis/emphysema)
and CHF (congestive heart failure) supersede
cancer as the commonest diagnoses of
patients admitted or transferred to
palliative care.
The buzzword in palliative care now
is “symptom-management”.
COPD and CHF and many cancers are not
curable. They should not mean a torturous
end either. Neither should the patient
with the diagnosis of end-stage COPD,
CHF or cancer become hot-potatoes in
the alacrity with which physicians palm
them off to other doctors involved in
their care. Frequently the oncologist
feels that the family doctor should
deal with pain and other symptoms, and
the family doctor feels the oncologist
should. Even sadder is the stoic patient
who believes that pain is part and parcel
of a serious diagnosis.
Palliative care and hospice aim toward
a quality life as well as a serene death.
The wonderful news is that both are
totally doable, regardless of the gravity
of the diagnosis.
The word “hospice” is derived
from the Latin “hospitium”
meaning an inn for travelers, so a resting
place. The first hospice was started
in England by Dame Cicely Saunders in
1940 and the first one in the United
States was founded in Yale, New Haven,
Connecticut in 1974. Since that time
and especially over the last decade
there has been a surge in the number
and type of hospice services around
the country.
There is also heightened interest in
Palliative Care in hospitals across
the nation. In fact having a Palliative
Care Unit serves to distinguish a hospital
from your run-of-the-mill facility with
the usual trauma, cardiology and snazzy
surgery services. Interestingly this
heightened interest is fueled by that
usual common denominator called the
dollar.
Figures published in March 2004 about
the Virginia Commonwealth University
compared care of the patient during
the last five days in the hospital,
one set of patients were at a palliative
care unit and the comparative set in
a non-palliative setting. In the non-PCU
setting $2267 were spent on drugs and
chemotherapy, compared to $511 in the
PCU. Laboratory tests took $1134 in
the non-PCU setting and $56 in the PCU.
Diagnostic imaging cost $615 in the
non-PCU and $64 in the PCU. Medical
supplies compared at $1821 and $731,
non-PCU and PCU respectively. After
the various costs were totaled including
room and board, all the above and miscellaneous,
the comparative total is startling:
$12319 for non-PCU care and $5313 for
PCU care.
all care outpatient and inpatient, serious
chronic diagnosis or not, should not
focus solely on cure. Palliation and
quality of life should form an integral
part of it. Until the antibiotic kills
the pneumonia bacteria, the patient’s
persistent cough should be treated with
a sedating cough suppressant so that
they can have sane nights.
Some very common misconceptions reign
in Toledo and perhaps all over the United
States in relation to hospice. One is
that hospice care is always inpatient
care in a facility. Actually, most hospice
patients prefer to die at home, and
do. Secondly, people think that hospice
is meant only for the last four days
of life. The fact is that the earlier
the patient is referred to hospice after
the diagnosis of a terminal illness,
the better their months or year are.
Consider I. R. a 70 year old patient
of mine that had end-stage CHF, COPD
as well as kidney disease. Prior to
referral to Odyssey Hospice, the patient
was admitted practically every week
to the hospital with a very low potassium
level. A very expensive workup ensued
and it was recommended that she have
exploratory surgery to define the cause
of the low potassium. Her daughter refused
the surgery, and the gravity and chronicity
of her diseases made her an appropriate
hospice referral. The discovery by the
hospice nurse that whenever the patient
felt short of breath, she would take
many tablets of Lasix, a diuretic, but
no potassium supplementation, ”found”
the reason for her potassium being always
dangerously low. Busted!
Now the patient’s breathing, mobility
and mind have dramatically improved
with the symptom management that, we
have agreed, shall be our main focus.
This is a classic case where curative
efforts can clash with the quality of
life.
Hospice care spans a spectrum: home
hospice in which the patient’s
physician can continue to be their family
doctor, or else the hospice medical
director can take over care. Either
way the patient receives care from a
visiting nurse, a home health aide,
a social worker, a trained volunteer
and pastoral care. Home hospice has
the power to totally change a patient’s
taste of life. And when this dramatic
change occurs a few months or a year
or so before death, the hospice philosophy
has been successful in providing quality
at death.
Hospice care can be provided at nursing
facilities as well, with the same involvement
of the above noted specialties. And
it is not just pain that is treated
but all and any symptoms that the patient
might have, be it nausea, drowsiness,
shortness of breath or any others.
A minority of patients has to be admitted
to an inpatient facility, and this is
usually during the last few days of
life. Medicare has a hospice benefit
and the burden on the patient is thus
removed and even in a hospital environment,
the bed can be converted to a “hospice
bed” and the Medicare benefit
applies.
The mindset of physicians is not just
fashioned in medical training when they
grow up with the sole focus on cure.
Many of us are equal victims of the
desire for immortality, sucked in even
more by the glitz that Hollywood emblazons
on youth, sprightliness and success.
And then there can be unresolved personal
issues around death and dying, manifested
in the concentrated approach toward
curing the disease and unwittingly ignoring
the patient.
A very prevalent misconception among
the medical community is that hospice
is akin to the death knell, and so the
patient is not referred as soon as a
serious chronic disease diagnosis is
made. This misunderstanding is fed by
the narcotics and sedatives that are
given by hospice to a patient at the
time of death. Physicians have been
heard to say “with hospice you
give the patient a bunch of morphine
and kill them”, or “hospice
is just euthanasia” and “hospice
just means withdrawal of all care”.
Actually, not only has the patient been
referred very late, the narcotics and
sedatives compromise the patient’s
ability to interact, and many die soon
thereafter. The issue is not the medications
required for patient comfort, but rather
the very late referral.
If the referral had been made as soon
as a serious diagnosis had been made,
the focus would be on maintaining function,
so narcotics would be given for pain
management, but only to the point that
pain is controlled and mentation not
affected. If the majority of referrals
to hospice are made too late, the only
option at the time of very advanced
disease is large doses of narcotics
and sedatives, with no time for the
development of tolerance, and at times
the induction of a comatose state. It
is important not to reject the entire
philosophy on the basis of these late
entrants to hospice.
For those patients and families who
are tethered to a physician blinded
to the benefits of palliative care and
hospice, it is vital to remember that
the referral to hospice can be made
by anyone, medical or lay, patients
themselves or else their families and
friends.
This wonderful odyssey called life shines
with the marvels of medicine. Palliative
care and hospice should balm its glorious
end.
(Mahjabeen Islam, MD is former medical
director of the Palliative Care Unit
at St. Vincent Mercy Medical Center
and is currently medical director of
Odyssey Hospice in Toledo)
