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Sandra McKinnon RN MN
Manager, Tertiary Palliative Care Unit
Grey Nuns Hospital and Community Health Centre
Edmonton, Alberta
"Why is palliative care available
for cancer patients and not for everyone with a terminal illness?"
A nurse manager from a general medical unit asked this fairly
common question during a hallway conversation the other day.
"Why don't you attend to all of the patients who die
from end stage renal or liver failure, or COPD, or cardiac
disease? They could use your help as well." Once again
I was aware of vaguely uncomfortable feelings as I struggled
for an answer. As a nurse with over twenty years of experience
in oncology, the move into a strictly palliative care practice
was a natural one for me. I might never have questioned the
nature of our patient population if it had not been for the
challenging queries of colleagues. An informal survey of co-workers
in palliative care confirmed that the manager's question is
a fairly common one and worth a closer look.
One of the fundamental texts on the
subject, the Oxford Textbook of Palliative Medicine (Doyle,
Hanks, & MacDonald, 1993), cites several reasons for the
fact that most palliative programs offer care mainly to cancer
patients and their families. The authors note that terminal
cancer diagnoses, as well as AIDS and some neurological disorders,
"are characterized by constantly changing physical symptoms,
increased risk of psychosocial distress, societal misunderstanding,
and a relatively short period of final illness" (p.3).
If we examine what usually happens to people dying with a
non-cancer diagnosis, we will usually see something quite
different. Even though the illness may eventually lead to
death, people will live, on average, much longer with any
medical diagnosis other than cancer. This is one of the reasons
why cancer is such a terrifying word.
No one questions the intense needs
of patients facing imminent death from cancer. However, while
cancer can move with lightning speed, it can also be a chronic
illness, advancing and then receding with treatment over the
course of many years. How, then, is chronic cancer any different
from chronic liver failure, chronic renal disease, or chronic
respiratory diseases? How does the lived experience of people
with these various diagnoses differ from each other? Each
of these illnesses may be characterized by exacerbation's
and remissions with an eventual terminal phase requiring support
for patients and families. Is the support required by people
dying from cancer different from the support needed by someone
dying from any other medical condition?
Part of our struggle with this question
may relate to the use of the emotionally laden words "terminal"
and "dying". It is important to remember that patients
and families living through the dying process can have very
different interpretations of the unfolding illness than we
will, as health care workers. Contrary to most public perceptions,
we know that cancer does not always lead to death. We also
know that people with chronic medical conditions may well
die of their disease. With any illness other than cancer,
we have the opportunity to distance ourselves intellectually
and emotionally from an inevitable outcome. It may be more
difficult for everyone involved to understand and accept that
a non-cancer illness has entered the terminal phase. People
with a chronic illness may die, but when do we begin to identify
them as "dying"? At what point in their illness
are patients ready and willing to accept palliative care?
The growing body of palliative care
knowledge on management of physical symptoms such as pain,
opioid toxicity, dyspnea, asthenia etc. directly relates to
cancer care. Of course, palliative care is more than the management
of physical symptoms; nevertheless it is also clearly tied
to the rhythms of cancer. Every other medical diagnosis will
have its own symptom control challenges. If, however, we restrict
our vision by looking only through the lens of medical practice,
we may miss an opportunity (indeed, an obligation) to review
the current state of palliative care practice. It may be that
palliative care physicians, by the nature of their specialized
knowledge and responsibilities, will have more difficulties
in broadening their scope of practice to include non-cancer
populations. While the medical diagnosis of a terminal illness
is important for nurses, chaplains, social workers, rehabilitation
therapists etc. to be able to plan care, the specific diagnoses
is perhaps less crucial than the word "terminal".
For example, there are general areas of care that nurses will
attend to for all dying patients, such as skin care, mouth
care, positioning, elimination, and family support.
It is perhaps in the patient and family
support areas of practice that palliative care workers will
have the most to share with colleagues. Anyone who is dying
will benefit from skilled psychosocial, emotional, and spiritual
support, and a connected interdisciplinary team of care providers.
Palliative care teams, with representation from all health
care disciplines, can be models for practice throughout our
various health care systems. We must begin by asking what
patients and their families need; what more can and should
be done to ensure that sufficient support is available to
help people through their dying process, whatever the cause
of death. The last thirty or so years have obscured the fundamental
understanding and acceptance of the inevitability of death,
at least in the areas of the world that have access to intensive
care units and the latest in technology. It will take a shift
in our current "western" cultural beliefs and education
of all health care workers before we can say that people who
are dying have adequate access to palliative care.
Is this answer sufficient to satisfy
our colleagues and relieve our discomfort when we are asked
why we do not provide care for everyone who is dying? Our
current incarnation of palliative care has grown out of the
overwhelming needs of people dying from cancer. It is clear
that my colleague's question does not yet have a very satisfying
answer for health care providers working with the general
"medical" population of patients. The challenge
is theirs to do the research to articulate the unique needs
of the patients with whom they work. Non-physicians in particular
may continue to struggle with the lack of clarity and easily
identified boundaries of care, since their skills may be more
easily transferred to other patient groups. If the goal of
palliative care is to assist the terminally ill to die well,
we must deepen our understanding both of dying and of what
it means to care for people with terminal illness.
References
- Doyle, D., Hanks, G., & MacDonald,
N. (1993). Oxford Textbook of Palliative Medicine. Oxford:
Oxford University Press.
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