It
is common for us at the Center for Hospice and Palliative
Care to be invited to participate in a patient's care within
hours or days of their dying. We have much to offer in that
setting: relief of pain, dyspnea, restlessness, bereavement
services for those remaining, and assistance with the burden
of care for the caregivers, to name a few. These services
are valued highly by those who receive them, and by us who
provide them. These, however, are a limited subset of what
is possible in terms of quality end-of-life care, limited
by time, by the lack of opportunity for development of a trusting
relationship, and by the lack of involvement by the entire
team in the patient's progress toward death. There is only
so much we can do in a couple of days…
There
are a number of factors that lead to such late referrals:
difficulties with prognosticating, the perception that the
patient is, "not yet ready for hospice…," concern that hospice
care amounts to medical abandonment, to name a few. For the
most part, these are the result of misinformation.
Palliative
medicine research has shown that physicians are generally
poor at predicting survival, almost always being more optimistic
than the actual outcome. The longer and more closely a physician
has known a patient, the more inaccurate the prediction, demonstrating
what has been called "the conspiracy of hope." This is not
just wishful thinking; it is a natural expression of a physician's
wish to preserve a relationship that is valuable to him or
her on a personal level.
Whether
or not a patient is, "ready for hospice," is clearly tied
up in the other issues. Physicians who believe the prognosis
is better than it actually is, or who misunderstand what hospice
care offers may be reluctant to refer until the patient is
at death's door. Patients who have an incomplete understanding
of hospice benefits or who fear withdrawal of currently meaningful
therapies may be resistant. Hospice care provides medication,
durable medical equipment, home nursing visits, home health
aide visits, social work and spiritual care visits as well
as volunteer services and 24-hour on-call availability at
no out-of-pocket cost, as long as they are provided for treating
the terminal illness. If the patient changes his/her mind,
he/she has the right to sign out of the program and pursue
whatever additional treatments the hospice agency does not
provide. Frequent in-home support improves the quality of
life, decreases the need for emergency room visits and hospitalizations,
and decreases night calls to physicians.
Care
is not directed exclusively at the patient. The patient and
his family (however the patient defines that relationship)
are clients of the hospice, and a great deal of work goes
into the preparation of the family for the patient's course,
mitigating conflicts, making arrangements for the patient's
dying and dealing with existential issues. This particular
aspect of hospice care particularly takes time and relationship
building.
At
the core of all this is a patient who does not cease to be
important because traditional medicine no longer offers cure
or meaningful prolongation of life. The care this patient
needs is available from us who specialize in its delivery.
We hope that hospice care is presented to patients as a beneficial
option rather than as the abandonment of hope. We do much
better work if we mustn't try to get it all done in a couple
of days…
