The Hospice e-News
What the Media Said about End-of-Life Care This Week
Week of September 26, 2006
…a service of
DEALING WITH SPIRITUAL
ISSUES AT END OF LIFE
“Spiritual Issues in the Care of
Dying Patients,” by Dr. Daniel P. Sulmasy, appears in
the current issue of JAMA. The article addresses the difference
between spirituality and religion, explores the meaning of values and
relationships at the end of life and suggests ways in which physicians can
identify and respond to spiritual needs.
Sulmasy also examines miracles, saying that a
patient’s belief in miracles should not prevent the healthcare team from
offering hospice services. The article
has a number of sidebars with specific suggestions for assessing spiritual
issues that often accompany serious illness, taking a spiritual history, needs
of dying patients that are specific to particular religions and elements of
religious coping.
Religiosity is defined “by strength
of belief or frequency of religious practices” and, says the author,
is “inversely correlated with fear of death.”
Spirituality, on the other hand, “is about one’s relationship with the
transcendent questions that confront one as a human being and how one relates
to those questions.” Sulmasy
says, “While not everyone has a religion, spiritual issues … arise for almost
all dying persons,” and “dying persons want to know if there is any meaning in
their suffering or in their dying.”
Physicians are sometimes reluctant to ask about a
patient’s spirituality or religion because of their own struggles or lack of
belief, sometimes because they “believe they lack the time or the
capability.” Sulmasy
believes that physicians must not ignore the spiritual needs of their terminal
patients, nor should they “overestimate their skills in addressing these
needs.” What physicians should do, he
says, is “take a spiritual history, elicit a patient’s spiritual and religious
beliefs and concerns, try to understand them, relate the patient’s beliefs to
decisions that need to be made regarding care, try to reach some preliminary
conclusions about whether the patient’s religious coping is positive or
negative, and refer to pastoral care or the patient’s own clergy as seems
appropriate.”
According to the author, spiritual
histories provide “a backdrop against which to understand the pressing
spiritual questions that dying patients face.”
The primary spiritual act, he says, “is the expression of empathic
concern. If sincere, nothing more may be
needed.”
The article also warns physicians
against proselytizing, saying, “All patients are vulnerable, but perhaps none
so much as those who are approaching the end of life. It is critical that no physician who
undertakes a spiritual discussion with dying patients misuse the power
imbalance between physician and patient in order to proselytize. Patients must always be perfectly free to
refuse to participate in such discussions and no aspect of care should be made
beholden to denominationally ‘correct’ responses.”
Physicians should have “an exit
strategy” from spiritual conversations. Sulmasy suggests several possible closing statements and
indicates that the next step may be referral to one or more other
professionals, such as psychiatrists, social workers or clergy, depending on
the physician’s assessment of the patient’s needs.
Sulmasy says,
“Religious beliefs can sometimes result in unwarranted suffering and distorted
decision making at the end of life.
Negative religious coping is associated with guilt, anxiety, fear and
denial. Physicians are often in an
excellent position to uncover these issues. … Negative religious coping
warrants referral to pastoral care or the patient’s own clergy.”
In discussing miracles, Sulmasy discusses the issue of prayers of patients or
families that “lead them either to reject medical recommendations or to demand
medical interventions that the treating team believes are inappropriate.” Physicians should not try to “reframe” a
patient’s theology of miracles, but should “listen attentively and make
appropriate interventions, such as referrals.”
Patients may demand futile care because they feel out of control or
think that discontinuation of a treatment means that they are being abandoned.
Sulmasy gives a
case, Mr. W, whose medical team apparently concluded, because he believed he
would live longer than six months, that hospice was not an option for him, Sulmasy says. It’s
the physician’s belief in length of life that matters, not the patient’s, he
writes. He adds, “One might believe that
enrolling in hospice would imply a lack of faith in God’s miraculous power, but
this is not a logically necessary truth, and it seems that this was the team’s
interpretation, not Mr. W’s. This led
the team to inform Mr. W that he was not a candidate for hospice, rather than
offering it to him as an option.” Sulmasy says that hospice could have been offered as the
best means of treatment of symptoms and that Mr. W could have been disenrolled if his condition improved. Additionally, Sulmasy
writes, the healthcare team appeared to believe that they were required to
offer chemotherapy because of Mr. W’s belief in a cure.
The author concludes by saying,
“Increasingly, good spiritual care is recognized as an important part of
high-quality care. Although spiritual
issues arise in the settings of acute and chronic illness, spiritual issues
assume a special salience in care at the end of life. … Attending to these
needs is integral to the job of being a good physician.” (JAMA,
2006;296:1385-1392)
IMPROVING PALLIATIVE
CARE FOR DEMENTIA PATIENTS
“Advice on Improving Palliative Care
Programs for Dementia Patients,” in Hospice
Management Advisor, says that less than 10% of current hospice patients are
diagnosed with dementia. But the number
of patients with dementia is increasing and hospice and palliative care
programs are changing to include programs for such patients, so that percentage
should increase.
Nurse Jan Dougherty says the “sheer
numbers” of people with dementia make hospice dementia programs necessary. Typically, the article says, dementia
patients are stable for long periods of time, with acute crises being
precipitated by infections such as urinary tract infections or aspiration
pneumonia. Studies show that when
advanced dementia patients are hospitalized for such infections, about half
will die within six months. Hospital staff who are caring for such patients are in good positions
to make hospice referrals.
Hospice of the Valley holds five-hour
dementia workshops in each of its offices, attracting social workers, nurses,
chaplains and others who see patients with dementia. Last year, Hospice of the Valley trained more
than 1300 persons and saw the percentage of their patients with dementia rise
from 8% to 18% this year. An added
benefit is that the average length of stay for their dementia patients is 118
days, compared to 68 days for other conditions.
Their daily census has also risen from 1200 to 2600 patients per day.
Dr. R. Sean Morrison, director of the
National Palliative Care Research and Training Center, says that there needs to
be better integration between hospices and other places where dementia patients
are treated, such as doctor’s offices and long-term care facilities. “Clearly there is an incredible opportunity
for collaboration between hospices and nursing homes,” he says, given that
two-thirds of nursing home residents have dementia. Morrison also calls for more integration
between palliative care programs and hospices, so that patients could be
transferred to hospice at the appropriate time.
Morrison says that palliative care is
“the ideal model of care for people with Alzheimer’s disease.” Palliative care programs could begin to see
patients early in the disease and help patients and families deal with advanced
care planning. As time passes,
palliative care personnel can offer respite care and help with cognitive
strategies. Other services could include
periodic evaluations of the patient’s status and needs, and assistance with
making decisions about when hospitalization is necessary and what treatments
are appropriate. When the patients’
status warrants it, patients can be referred to hospice and integrated into
that system.
One problem Morrison notes is the disenrollment of dementia patients from hospice once they
improve under hospice care. But the
disease is progressive, Morrison says, and one solution to the problem would be
better documentation explaining the transitive nature of improvements in a
progressive disease. (Hospice Management Advisor, 8/1)
PAIN & PALLIATIVE
CARE NOTES
* Researchers at
* Researchers looking
for biological pest controls have discovered a new enzyme inhibitor that may
eventually lead to new pain medicines for patients with inflammatory diseases
such as arthritis. Tests in rodents show
the compounds to be as effective as low doses of Celebrex
and Vioxx, but do not produce the blood chemistry
changes associated with heart attacks.
One inflammatory disease expert called it “the most significant
discovery in inflammation in more than a decade.” (Pharma Business Week,
9/18)
* JAMA has a new patient page on palliative care, adapted
from one previously published in March.
This one focuses on support services in palliative care. JAMA
patient pages are available at jama.ama-assn.org. Click on “Information for Patients” on the
right hand side of the page and follow the directions. (JAMA,
2006;296:1428)
OTHER NOTES
* The current
issue of JAMA has an article entitled
“Terminal Withdrawal of Life-Sustaining Supplemental Oxygen.” HNN
will report in full on the article in a later issue. (JAMA,
2006;296:1397-1400)
* Private
fee-for-service insurance plans, in which the government pays insurance
providers an 11% subsidy to offer basic medical coverage to seniors, are
growing rapidly. Critics see these plans
as “further evidence that the government is paying private industry to take
Medicare off its hands.” Figures show,
that in the plans, the government pays substantially more than they would if
the patients were covered by Medicare.
See www.nytimes.com/2006/09/22/business/22medicare.html,
for the article, “Luring Customers From
Medicare.” (The New York Times, 9/22)
* Congress is trying
to address ways to reduce the suicide rate of senior citizens. Senator Gordon H. Smith, (R-Oregon) says, “It
is a sad irony that as medical technology evolves to extend lives, seniors are
choosing to end theirs.” In 2003,
seniors represented 12.4% of the population but 16.7% of the suicides.
* Heaven is still
waiting for Art Buchwald and he’s had his summer on
*
* Common
responses that are offered to grieving persons, such as “There must be a reason
for this” or “There is so much to celebrate about his life,” are not useful,
says counselor Steve Kalas. They may or may not be true, but they’re
useless. “There is no alternative to
loss and grief,” Kalas writes, “Except for the denial
of grief, which brings myriad unhappy symptoms of heart, body and mind. … We
are defined fundamentally by our losses, not our celebrations, virtues and
victories,” Kalas says. (
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sponsor of Hospice News Network for 2006.
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hospices and home healthcare agencies through their Hospice and Community Care
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