Journal of Clinical Oncology
© 2002 Lippincott Williams & Wilkins, Inc.
  _____

Volume 20(11)             1 June 2002             pp 2752-2755
  _____

Overcoming Obstacles to Hospice Care: An Ethical Examination of Inertia and
Inaction
[THE ART OF ONCOLOGY: WHEN THE TUMOR IS NOT THE TARGET ]
Daugherty, Christopher K.; Steensma, David P.
From the Department of Medicine, MacLean Center for Clinical Medical Ethics,
the Cancer Research Center at the University of Chicago, and Vitas Hospice,
Chicago, IL, and Division of Medical Oncology, Department of Oncology and
Division of Hematology, Department of Medicine, Mayo Clinic, Rochester, MN.
C.K.D. is a former recipient of a Career Development Award from the American
Society of Clinical Oncology. His work is currently supported by a Faculty
Scholar Award from the Soros Foundation Open Society Institute’s Project on
Death in America and by National Institutes of Health grant no. R01
CA087605-01A1.
Address reprint requests to Christopher K. Daugherty, MD, University of
Chicago, 5841 South Maryland Ave, MC 2115, Chicago, IL 60637-1470; email:
[log in to unmask]
  _____


Outline
*         VIEWING OBSTACLES TO HOSPICE REFERRAL AS ETHICAL DILEMMAS
<http://gateway1.ovid.com/#15>
*         COMMUNICATING TERMINAL PROGNOSIS WHILE MAINTAINING HOPE
<http://gateway1.ovid.com/#17>
*         CONSENT FOR HOSPICE AND WILLINGNESS TO ACCEPT A TERMINAL PROGNOSIS
<http://gateway1.ovid.com/#22>
*         PATIENT ABANDONMENT, CONFLICTS OF INTEREST, AND LOSS OF CONTROL
<http://gateway1.ovid.com/#27>
*         HOSPICE SERVICES AND PER DIEM REIMBURSEMENT: SUFFICIENT RESOURCES
FOR ALL DYING CANCER PATIENTS? <http://gateway1.ovid.com/#35>
*         ACKNOWLEDGMENT <http://gateway1.ovid.com/#43>
*         REFERENCES <http://gateway1.ovid.com/#45>
  _____

THE STATISTICS are sobering: more than half a million Americans die of
cancer each year, but only 20% to 50% of eligible patients receive any
formal hospice care. 1,2 <http://gateway1.ovid.com/#46>  When cancer
patients do enroll in a hospice program, their median survival is just 2 to
3 weeks—barely enough time for many patients and families to understand the
hospice program’s system, let alone receive the full range of benefits
offered. 3-5 <http://gateway1.ovid.com/#48>  Some patients are even referred
for hospice care so late in their disease course that they die before all
the paperwork can be completed.
Hospice-based palliative care is widely acknowledged as an invaluable
intervention for patients approaching the end of life. Dying of cancer
without the help of a hospice program has been compared to undergoing
surgery without anesthesia. Why, then, does the promise of hospice care so
frequently go unfulfilled?
Some have argued that the fundamental problem is that cancer physicians are
simply inaccurate in predicting actual time to death. 5
<http://gateway1.ovid.com/#50>  Others claim that physicians just don’t know
when to quit—that oncologists keep offering aggressive anticancer therapy,
including experimental interventions, even when an imminent fatal outcome
should be obvious to everyone. Critics argue that because of systematic
overestimation of patient survival time and an inflated view of the benefits
of anticancer therapy, oncologists tend to refer their patients for hospice
care far too late for them to receive meaningful end-of-life care—if they
refer their patients at all.
Physicians do often overestimate their patients’ survival time, but this can
only be part of the story. Oncologists can usually identify cancer patients
with an expected survival of less than 6 months, which is the Medicare
criterion for hospice referral in the United States. 6
<http://gateway1.ovid.com/#51>  But clearing this hurdle of knowledge does
not mean all obstacles to action have been overcome. In fact, we believe
that physicians’ prognostication skills are not as important in erecting
barriers to hospice program referrals as are attitudes about how and when a
grim prognosis should be communicated and fears about how hospice enrollment
might change patient care.
VIEWING OBSTACLES TO HOSPICE REFERRAL AS ETHICAL DILEMMAS
<http://gateway1.ovid.com/#toc>
If oncologists are hesitant or unwilling to refer patients with advanced
cancer to hospice care, yet hospice programs provide useful and effective
palliation, then the reasons for oncologists’ aversion to referral might
best be viewed as ethical dilemmas. True ethical dilemmas, such as these,
are complex and admit no easy answers. Are oncologists concerned that
communicating a terminal prognosis to cancer patients and their families
will take away hope? Is hospice care still appropriate for patients and
families who are unwilling to accept a fatal prognosis, and just how might a
suitable “informed consent” for hospice enrollment be obtained from such
patients? Are physicians apprehensive that some patients receiving home
hospice care will feel abandoned by their doctor? How do physicians deal
with their own emotions about separation from their long-term patients? Do
oncologists fear loss of control over their hospice-enrolled patients’
medical care, perhaps worrying that the hospice program will categorically
deny expensive interventions such as transfusions, palliative radiotherapy,
or antibiotics that may still offer some benefit? Each of these questions
has challenging ethical and practical dimensions.
COMMUNICATING TERMINAL PROGNOSIS WHILE MAINTAINING HOPE
<http://gateway1.ovid.com/#toc>
Some clinicians believe that it is not the physician’s place to hang black
crepe in the sickroom; these physicians worry that honestly disclosing a
terminal prognosis to patients and families risks destroying hope. 7-9
<http://gateway1.ovid.com/#52>  While most patients’ and family members’
hopes can be redirected toward more realistic outcomes (eg, death at home,
death with dignity, and death without excessive pain), some people will
remain convinced that accepting a terminal prognosis means giving up hope
for the only outcome they consider truly meaningful: continued survival, or
even a cure. For a few of these patients, talk about redirecting hope away
from unrealistic expectations only irritates them or arouses suspicion. The
clinician who is perceived as persistently insisting on changing care goals
exclusively toward palliation may motivate the occasional patient to
aggressively seek out someone who will paint a brighter picture—even if that
picture is a mirage and even if it means resorting to dangerous or expensive
alternatives. 10,11 <http://gateway1.ovid.com/#55>  These patients may
search far and wide for someone who will act in concert with their
unwavering goal for a cure: “If you can’t or won’t do anything more for me,
doctor, then I’ll find someone who will!”
In this setting, it may be inappropriate for physicians to bludgeon a
patient with a litany of reasons why it is time to “switch” to palliative
therapy. It is easy to understand why some busy clinicians thrust into this
situation ultimately accede to patients’ or families’ demands for further
anticancer therapy, even while knowing full well that such therapy is
unlikely to offer any real benefit. Some patients simply refuse to believe
that enrolling in a hospice program is not the same as giving up.
Given these genuine concerns about destroying hope, it is important to keep
in mind the precise documentation requirements for obtaining hospice
benefits. In the United States, a physician must certify that a patient
enrolling in a hospice program has an anticipated survival time of 6 months
or less if the illness follows the usual course. But there is no requirement
that the patient must actually believe that in his or her case, the disease
will follow the usual course. And what if a patient lives longer than 6
months? There are no penalties for pessimism, and there are no consequences
for an inaccurate hospice referral made in good faith. If a hospice-enrolled
patient lives more than 6 months, the patient can be recertified for another
6-month benefit period if the prognosis remains guarded, which is usually
the case for patients with advanced cancer. Thus only a reasonable
possibility of dying in the next 6 months is required for hospice
eligibility, not an absolute certainty of death.
Some clinicians may find it more comfortable to discuss the potential
benefits of hospice program enrollment with patients if they are careful to
speak in terms of possibility and likelihood rather than certainty. Such
“possibility thinking” promotes good, comprehensive palliative care while
not crushing those patients who need to cling to the fragile, flickering
hope that their case will be the exception or the miracle.
CONSENT FOR HOSPICE AND WILLINGNESS TO ACCEPT A TERMINAL PROGNOSIS
<http://gateway1.ovid.com/#toc>
In some settings, when oncology patients enroll in hospice care, they sign
an informed consent document stating they understand that they have a
terminal illness with a limited prognosis and do not wish to receive any
further anticancer therapy. In addition, patients are often asked to sign an
advance directive form specifically stating that when death arrives, they do
not wish to attempt to delay it with dramatic interventions such as
cardiopulmonary resuscitation or mechanical ventilation.
Although such requirements give legal protection and ensure complete
disclosure of prognosis and goals, this process may be seen as a burden.
Clinicians may worry that patients will perceive such formal, forceful
documents as a demand to “sign their life away.” Physicians who consider
this consent process an obstacle may shy away from a discussion of hospice
enrollment, delaying the conversation for days and weeks while illness
progresses and the opportunity for meaningful hospice care slips away.
In addition, even when physicians are completely forthright, some patients
will simply deny their prognosis. Even the most compassionate oncologists
and those most skilled in communicating with patients occasionally run
across people who adamantly refuse to accept their impending death.
Physicians should realize that many hospice care providers are experienced
in the art of negotiating expectations and prognosis and can help bear such
burdens. Most palliative care professionals are aware that patient and
family acceptance of a terminal prognosis is a dynamic process. The overall
goal of hospice care is to relieve suffering, and many hospice workers
understand that belaboring the point of prognosis disclosure and insisting
on full and explicit documented understanding on the part of the patient can
increase suffering. In such cases, hospice programs may be willing to make
exceptions to their customary consent process.
PATIENT ABANDONMENT, CONFLICTS OF INTEREST, AND LOSS OF CONTROL
<http://gateway1.ovid.com/#toc>
When patients have been receiving care for cancer for months or years before
the final phase of their illness, they may view hospice program enrollment
as a form of abandonment by a familiar, trusted physician. Patients who have
become accustomed to frequent laboratory tests, chemotherapy cycles,
hospitalizations, and visits to distant clinics may suddenly find themselves
receiving most of their care at home, without easy access to the familiar
clinic or hospital. Oncologists may be hesitant or unwilling to refer a
patient for hospice care if they sense separation anxiety in the patient or
family.
Fear of separation can be a two-way street. Medicine is, above all, a
relationship, and the intense, prolonged clinical contact typical of cancer
care can forge a strong emotional bond between a physician and a patient.
Every oncologist tends and admires a few giant sequoias among their forest
of patients. One study demonstrated that the longer a physician knows a
patient, the less accurate the physician is in predicting the time to the
patient’s death. 12 <http://gateway1.ovid.com/#57>  Unwillingness to accept
an impending death becomes much more complicated when the patient and the
doctor share it.
The good news is that hospice benefits allow oncologists to continue to play
an important role in their patients’ care even after a patient has enrolled
in a hospice program. 1 <http://gateway1.ovid.com/#46>  Patients receiving
hospice care can continue to visit physicians in the outpatient setting as
frequently as they wish, and physicians can bill as they normally would for
outpatient services. Although many patients currently enrolled in hospice
programs are simply not well enough to travel to an outpatient facility,
those referred for hospice care at an earlier point in their clinical course
can interact with their physicians in the clinic until the final stages of
illness.
Should hospice-enrolled patients require readmission to an inpatient setting
for respite care or for a complication that cannot be treated at home, it is
often possible to admit the patient to the original, familiar care
institution, even if the hospice program has no affiliation with that
institution. This usually requires removing the patient from hospice care
during the hospitalization, but there are currently no prohibitions or
punishments for doing this, and patients can return to the care of the
hospice program at the time of discharge.
Hospital admissions may be inconvenient for hospice programs, and some
programs are justifiably concerned about the potential for being accused of
fraud as a result of several recent high-profile hospice audits. 1
<http://gateway1.ovid.com/#46>  However, the abuses documented in these
audits have typically involved hospice program enrollment of patients with
chronic neurological diseases, patients with dementia, and residents of
long-term health care facilities, not patients with advanced cancer who are
being cared for at home.
It may seem cynical even to mention it, but it is no secret that there is at
least one potential obstacle to hospice referral that represents a serious
conflict of interest for oncologists: the current clinical payment structure
in the United States favors administration of expensive chemotherapy and
growth factors but is much less generous when it comes to thinking and
giving advice—and pays nothing extra for caring. The snake of selfishness
is, we hope, a rare species. But who has not wondered, at least once,
whether a colleague’s choice of certain therapeutic agents was partially
influenced by monetary considerations? Everyone agrees that making clinical
decisions based on potential physician revenue is completely unacceptable,
but the reality is that money speaks with a loud voice, and it may be hard
not to listen. It is human nature to act in ways that are rewarded, and as
Ralph Waldo Emerson once pointed out, often the only reward for virtue is
virtue.
Financial considerations aside, most oncologists are extremely busy people,
and it almost always takes less time to explain the side effects and
schedule of a new treatment regimen than it does to discuss death and dying.
It is also easier on emotions to talk about possible therapies than it is to
peer into the murkiness of mortality, and it is no secret that medical
education is better at preparing physicians for opening the medicine cabinet
than for lifting the lid on a philosophical Pandora’s box. More training in
communication skills and more practice at discussing sensitive topics
certainly can help, but even eloquent, compassionate physicians are still
bound by the 24-hour day. Yet somehow, time for such intimate discussions
must be scavenged; these weighty matters are simply too important for
procrastination, and delay is a disservice to patients.
HOSPICE SERVICES AND PER DIEM REIMBURSEMENT: SUFFICIENT RESOURCES FOR ALL
DYING CANCER PATIENTS?  <http://gateway1.ovid.com/#toc>
Another barrier to providing excellent end-of-life care to cancer patients
is the relatively meager Medicare, Medicaid, and insurance benefits that
provide the bulk of hospice program revenue in the United States. Hospice
care is currently paid for through a per diem benefit, with the Medicare per
diem ranging from $100 to $120, varying regionally. 1
<http://gateway1.ovid.com/#46>
This reimbursement is often adequate for administrative costs and for
hospice benefits such as in-home equipment and medications for symptom
control, especially in hospice programs where volunteers provide many
services. But what about more expensive and aggressive palliative
interventions such as antibiotics, patient-controlled anesthesia pumps,
radiation therapy, and blood transfusions? The standard per diem does not
begin to cover this level of care. As a result, physicians who feel strongly
about the continued benefit of such interventions for patients at the end of
life may not refer such patients to hospice programs if they believe that
the program is unable or unwilling to provide these costly interventions.
Such ethical concerns can snowball: physicians may not refer other patients
for hospice care, even those who are not receiving aggressive and expensive
interventions, because they fear that hospice programs may be “holding back”
certain types of appropriate care because of a limited budget.
Oncologists should keep in mind that even the most resourceful hospice
programs operate on a thin fiscal margin and that the money for expensive
services must come from somewhere. Small numbers of costly patients may
drive hospice programs to the brink of insolvency, where care for all
enrolled patients will suffer. Delays in referral can exacerbate the
problem: if expensive services are used for patients who spend only a short
time under hospice care, the hospice program will have fewer days of per
diem benefit over which to spread the expenses.
Some patients who continue to receive costly or aggressive interventions are
not yet appropriate candidates for hospice care. But it is by no means
obvious where to draw the line. Expensive therapies sometimes do offer a
legitimate palliative benefit for patients with terminal cancer who have a
high likelihood of death within 6 months. Hospice programs have an ethical
obligation to care for these patients. Some creative solutions have been
explored, such as subcontracting specialized services like radiation therapy
and transfusion support to other health care agencies. 13
<http://gateway1.ovid.com/#58>  A demonstration project funded by the Robert
Wood Johnson Foundation showed the feasibility of supporting limited
administration of palliative chemotherapy to hospice-enrolled patients,
including the use of selected experimental anticancer agents (I. Byock, B.
Volk-Craft, personal communications, June 2001).
In reality, many hospice programs simply do not have the resources to
provide this level of care. Yet some programs may still accept patients who
need expensive services. These programs are willing to accept patients whose
care will result in a net financial loss in order to develop more meaningful
relationships with referring clinicians. The expectation is that these solid
relationships will lead to the future referrals of other hospice-appropriate
patients who have less intense clinical needs. Therefore, it is best not to
make assumptions, but rather to communicate directly with hospice programs
on a case-by-case basis.
In conclusion, it has been argued that some of the barriers in providing
end-of-life cancer care in the United States might be eliminated by
increasing or restructuring the Medicare hospice benefit. 1
<http://gateway1.ovid.com/#46>  Money is certainly important, but it is not
enough. For hospice care to become more widely and appropriately used,
efforts must be directed toward improving the referral patterns of the
physicians who actually take care of cancer patients. Specific attention
must be given to the complex ethical and practical obstacles to hospice
program referral discussed above.
Continuing medical education programs that focus on the details of Medicare
and insurance hospice benefits may improve physicians’ understanding of
end-of-life care. Research efforts are also needed, aimed at understanding
current communication and decision-making practices among cancer physicians
and their patients to clarify how behaviors, beliefs, habits, and practices
may create obstacles to adequate hospice-based, palliative care. Until
education improves knowledge and research provides clarification, the
ethical dilemmas faced by cancer physicians will continue to promote
misunderstandings and will prevent patients with advanced cancer from
receiving the best possible palliative care—and inertia and inaction will
hold the day.
ACKNOWLEDGMENT  <http://gateway1.ovid.com/#toc>
The authors thank Kathy Foley, MD, for her helpful comments during the
writing of the manuscript and for her help and support in the process of
examining the issues described in this article.
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Accession Number: 00005083-200206010-00023

Edward E. Rylander, M.D.
Diplomat American Board of Family Practice.
Diplomat American Board of Palliative Medicine.