Talking About Hospice:
Avoiding Pitfalls and Seizing Opportunities
Physician Update, Spring 2003
by David Casarett MD, MA
Introduction
Hospice programs have emerged as an important
way of providing care for dying patients, and
currently provide care for approximately 25%
of all deaths in this country.(1) Hospice's
growth in popularity has been fueled at least
in part by studies that have demonstrated that
these features offer quality care at the end
of life, with excellent patient and family
satisfaction.
Despite these benefits, the median
length of stay in hospice is less than 3 weeks,
and many patients receive hospice care only
for several days.(1,
2) Those patients who are referred and
their families, benefit from hospice services
only briefly. This article describes an approach
to identifying patients who might benefit from
hospice earlier in the illness course and a
way to initiate a discussion about hospice
with these patients and their families.
With Whom Should We Discuss Hospice?
In deciding whether, and when, to discuss hospice
with a patient, clinicians can look for guidance
to two key questions. First, clinicians should
consider the patient's prognosis in broad terms.
Although federal regulations that govern the
hospice Medicare benefit stipulate a prognosis
of 6 months or less,(3) this
may be very difficult for clinicians to determine
accurately. Moreover, clinicians typically
overestimate prognosis.(2,
4)
Therefore, in considering whether and when to
initiate a discussion about hospice, clinicians
should use prognosis only as a rough guide, with
a low threshold for initiating a discussion.
Although hospice eligibility criteria exist,
they are complex, and are best left to the hospice
to determine for each patient. One approach is
to think about whether we would be surprised
if a patient died in 6 months. If not, hospice
may be an option to consider. Whatever the basis
for estimating prognosis, though, it is important
to remember that there is no penalty for underestimating
survival. Federal regulations require only that
a physician make a good faith effort to assess
prognosis based on his or her assessment of the
illness's natural course.
If a patient's prognosis meets this test, clinicians
should next consider whether the patient and
his or her family have needs for care that could
be met by hospice. At least three broad categories
of needs are worth considering. First, patients
with significant needs for symptom management
should be considered for hospice discussions.
Hospice is particularly effective in managing
symptoms that require frequent medication adjustments
and home assessments, like pain or nausea. Hospice
services may also be particularly valuable for
symptoms like dyspnea that require ultidimensional
treatment, contact, and reassurance. Second patients
and families may also benefit from hospice services
if they are facing transitions in care, with
escalating needs for care. For example, patients
being discharged from the hospital or moving
in with a family member due to a decline in function
may benefit from hospice services. Third, and
perhaps most important, patients and families
with increasing needs for practical help at home
are particularly likely to benefit from hospice
services.
Are Hospice Services Important to Patients
and Families?
Several of our ongoing and completed studies
have found that the services that hospice offers
are very important to patients and their families.
In one study, we found that caregivers of patients
with Alzheimer's Disease rated virtually all
of hospice services as being “very important" or "extremely
important."(5) Furthermore,
although these caregivers believed that hospice
services would help the patients, they were significantly
more likely to think that hospice would help
them.
In several other studies at hospices around
the country, we are finding that patients and
families enroll in hospice largely because of
the services that hospice offers. Some of the
most highly valued services are a visiting nurse's
help with pain and symptom management, practical
help around the home from a home health aide,
and the case management function that hospice
offers. Even nursing home residents who already
have support services in place, and patients
who are still receiving active treatment have
substantial needs for care.(6,
7) Taken together, all of these findings
suggest that needs for care and services are
very important in patients' and families' decision-making
about hospice enrollment.
Beginning a Hospice Discussion
After determining that a patient may be eligible
for hospice and may have needs for care that
hospice can address, clinicians must find a
way to broach the topic of hospice in a way
that is gentle and yet still communicates effectively.
The first challenge that clinicians face, in
many cases, is avoiding patients' and families'
misconceptions about hospice. People often
believe that hospice is only for patients who
are imminently dying, or only for patients
with cancer. People may believe that hospice
only provides residential care, or that hospice
does not provide care to patients at home,
or in long term care facilities.
Clinicians need to be aware of these misconceptions,
but need not address them head on. Indeed it's
often best not to do so. Identifying misconceptions
and correcting them early in a sensitive conversation
about hospice can create and adversarial relationship
at a time when it's more important to build a
partnership. Instead it can be more effective
to begin the discussion indirectly. Although
every patient is different, and every discussion
will take a different course, one can think of
the hospice discussion as having 5 steps:
1. Decide who should be involved in the discussion.
This usually includes the patient, but often
includes friends and family members. Two of
our ongoing studies are currently examining
the hospice enrollment process, and both are
finding that only about l0% of patients make
the hospice enrollment decision alone. The
vast majority of patients share the decision
with others.
2. Determine what the patient knows about
his or her illness and its prognosis.
Often we have a good sense of this, particularly
for patients with whom we have a longstanding
relationship. Nevertheless, there are often surprises,
and it can be useful to clarify a patient's understanding
early in the discussion. In the next few weeks,
there will be some choices that you'll need to
make, and I’m here to help you make them.
But I'll be better able to help you if I have
a good idea of what's important to you. My patients
tell me two different things are important to
them. Some of my patients say that they want
treatment to help them live as long as possible
even if it means having more pain and discomfort.
Other patients tell me they want to be as comfortable
as possible, even if that means not living as
long. Does either of these sound like it describes
what's important to you?
3. Define the goals for care.
Again, for a longstanding relationship, these
goals may be clear. In that case, simply summarizing
what we know those goals to be can structure
the discussion. If those goals are not clear,
one can define those goals in general terms,
by describing two broad options.
4. Identify the patient's and family's needs
for care.
For patients whose goals for care are consistent
with hospice, defining the patient's and family's
needs for care can be an effective way to set
the stage for a hospice discussion. As noted
above, needs for symptom management, practical
help around the home, or case management often
motivate enrollment in hospice. Open-ended questions
can be useful in identifying needs for practical
assistance ("Do you think you could use
some extra help around the house?").(9) However,
symptom needs are probably best identified using
a validated symptom assessment instrument or
specific questions. In identifying needs for
services, it's helpful to focus specifically
on needs for hospice services (e.g. nurse, social
worker, chaplain, physician, home health aide,
durable medical equipment and medications).(3)
5. Introduce hospice as a way to achieve
goals and meet needs.
Last, introduce the option of hospice as a way
to achieve a patient's goals for care, and meet
the patient's and family's needs. There are at
least three advantages to introducing hospice
after a discussion of goals and needs for care.
First this approach makes it clear that the clinician
understands the patient's goals for care and
needs for care, and that a recommendation of
hospice is consistent with those needs and goals.
Second, this approach avoids misconceptions about
hospice, at least temporarily. By postponing
a mention of hospice until after goals for care
and needs for care have been discussed, clinicians
are in a better position to describe what hospice
can do for patients and families. Misconceptions
are then balanced against a more positive view
Finally, by delaying an introduction of hospice
until after a discussion of goals and needs for
care, clinicians can present hospice as a positive
development, and as a way to improve that patient's
care.
Does This Approach Work?
The Palliative Care Clinic at the Philadelphia
VA Medical Center has been using this approach
for all of the patients that we see for pain
and symptom management needs. Overall, we've
found that our patients spend twice as much
time in hospice before they die compared to
patients referred from other sources.(9) These
results are promising and, we currently have
two additional randomized controlled trials
going on that are designed to test the effectiveness
of this strategy in communicating about hospice.
One study is being conducted in the outpatient
setting and the other is in nursing homes.
Conclusion
A simple rule of thumb to guide decisions about
when to discuss hospice is that all other things
being equal, we should probably be initiating
these discussions earlier. Often, thought this
is much easier to recommend than it is to carry
out. Nevertheless, by using broad criteria
to identify patients for whom a hospice discussion
is appropriate, and by focusing the discussion
on what hospice can do for the patient and
his/ her family, clinicians have the best chance
of creating an effective discussion.
Dr. Casarett directs the Palliative Care Clinic
at the Philadelphia VA Medical Center, and is
an Assistant Professor in the Division of Geriatric
Medicine at the University of Pennsylvania. He
is Board-certified in Palliative Medicine and
is a Palliative Medicine Representative on the
Board of Directors of the National Hospice and
Palliative Care Organization.
References
1. National Hospice and Palliative
Care Organization. Facts and figures on hospice
care in America. July 2001. Available at: http://www.nhpco.org.
Accessed August 3, 2001.
2. Christakis NA, Escarse J. Survival of
Medicare patients after enrollment in hospice
programs. N Engl J Med. 1996;335:172-118.
3. Regulations MH. 42 Code of Federal Regulations,
Part 418 1996.
4. Christakis NA, Lamont EB. Extent and determinants
of error in doctors' prognoses in terminally
ill patients: prospective cohort study [sec
comments]. Bmj, 2000; 320(7233): 469 - 472.
5. Casarett D, Takesaka J, Karlawish J, Hirschman
K, Clark C. How should clinicians discuss
hospice as an option for patient care in
the final stage of dementia? Caregivers'
attitudes toward hospice and information
needs. Alz Dis Assoc Dis. 2002; 16: 116-122.
6. Casarett D, Hirschman K, Henry M. Does
hospice have a role to play in end-of-life
care in nursing homes? J Am Geriatr Soc.
2001; 49: 1493-1498.
7. Casarett D, Abrahm J. Comparison of paticnts
referred to hospice vs. a bridge program:
patient characteristics, needs for care,
and survival. J Clin Onc. 2001; 19: 2057-2063.
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