The Hospice e-News
What the Media Said about End-of-Life Care This Week
Week of August 29, 2006
…a service of
VA
ETHICS COMMITTEE REPORTS ON PALLIATIVE SEDATION
In March, the National Ethics Committee of the
Veterans Health Administration issued The Ethics of Palliative Sedation as one
of its periodic reports "on timely topics that are of significant concern
to practicing health care professionals."
The report says, "There is broad professional agreement that
palliative sedation is a clinically and ethically appropriate response when
patients who are near death suffer severe, unremitting symptoms." The article defines palliative sedation as
"sedating a patient to the point of unconsciousness to relieve one or more
symptoms that are untractable and unrelieved despite aggressive
symptom-specific treatments, and maintaining that condition until the patient dies."
The report examines the ethical debate over
palliative sedation by examining five key questions:
* "Is palliative sedation different from
physician-assisted suicide and euthanasia?" Both in terms of intention (the healthcare practitioner
does not intend to kill the patient) and proportionality (risky procedures are
ethical if the potential benefits are significant enough to justify them), the
article says, palliative sedation is different from physician-assisted suicide
and euthanasia.
* "Is palliative sedation ever ethically
appropriate for patients who are not imminently dying?" The authors, though they note a division in
the professional community about this issue, answer the question in the
negative, saying that palliative sedation is "understood to be literally
an intervention of last resort at the end of life."
* "Should willingness to forgo
life-sustaining treatment be a condition of administering/receiving palliative
sedation?" The authors again note
the division of experts on the question, but "find no compelling argument
to limit other concurrent life-sustaining interventions (such as artificially
administered nutrition and hydration or ventilator support) for patients who
receive palliative sedation, so long as those interventions are clinically
indicated."
* "Is palliative sedation ethically
appropriate when suffering is 'existential?'" The committee could not reach a consensus on
this issue and took "a conservative stance" by saying that palliative
sedation is not appropriate in such circumstances. "Further," they said, "in our
view VA's mission and its unique patient population create a special risk that
permitting VA practitioners to offer palliative sedation when the patient's suffering
cannot be defined in reference to clinical criteria could erode public trust in
the agency."
* "May palliative sedation be provided to
patients who lack decision-making capacity?" The authors write, "To deny a patient's surrogate
the possibility of consenting to palliative sedation undermines the surrogate's
role in shared decision-making and in effect undermines the patient's right to
choose this intervention."
The executive summary of the report recommends
that the VA adopt policy that:
* "Permits the administration of
palliative sedation (by definition, as a last resort) only: (a) when severe pain or other clinical symptoms
. are not ameliorated by aggressive symptom-specific interventions that are
tolerable to the patient; (b) for patients who have entered the final stages of
the dying process and who have a DNR order; (c)with the signed informed consent
of the patient, or surrogate if the patient lacks decision-making capacity, as
required by VA policy for treatments or procedures involving general
anesthesia."
* "Establishes safeguards to protect
patients' interests and assure consistent, high quality care by: (a) providing for consultation with experts
in palliative medicine, psychiatry or clinical psychology, and spiritual care
as appropriate in the decision-making process; (b) clarifying with the patient
and/or surrogate the plan of care regarding concurrent life-sustaining
treatment, regular assessment of the patient's clinical status and ongoing
eligibility for palliative sedation, and the practitioner's obligation to
discontinue deep sedation in the event the patient's status improves; (c)
assuring the participation of a health care professional with appropriate
expertise in palliative care and the administration of palliative sedation; (d)
assuring that the patient continues to receive appropriate care and hygiene;
(e) monitoring sedation to assure adequate and continuous unconsciousness while
avoiding inappropriate or unnecessary untoward drug effects; (f) documenting
the rationale for palliative sedation and the informed consent conversation
appropriately in the patient's health record; and (g) establishing clear
procedures for resolving disagreements about treatment plans or specific
treatment decisions, including ethics consultation when appropriate." (The Ethics of Palliative Sedation)
NUMBER
OF PERINATAL HOSPICE PROGRAMS IS INCREASING
The current issue of Conscience magazine looks
at the growth of perinatal hospice programs, which offer services such as
end-of-life planning, information on palliative care and grief counseling to
pregnant women who will bear children who will survive only for a short time
after birth. Minnesota has modified its
Women's Right to Know Act with the Fatal Fetal Anomaly Amendment, which allows
pregnant women whose fetuses are not likely to survive long after birth to "discuss
the option of abortion without having to listen to a lecture about the father's
liability, for child support and the availability of Medicaid for prenatal
care."
The article notes the growth of such hospices
over the last 10 years, "largely in response to demand from parents whose
babies were diagnosed in utero with fatal conditions." Some diagnoses, such as anencephaly (infants
with a partially developed or missing brain) and trisomy 18, mean that parents
must choose whether to abort the fetus or bear a child that will soon die. Elizabeth Sumner, palliative projects
coordinator of San Diego's Elizabeth Hospice, says, "As we became known
for caring for dying babies, pregnant couples began knocking on our door to
seek our services." They knew that
their infants would probably die shortly after birth, Sumner said, but wanted
to "ensure that the experience was one of dignity."
Many parents who choose not to terminate a
pregnancy often face a lack of compassion on the part of the medical community
for their decision. Sumner says,
"I've been consistently struck by the fact that almost every couple has
said that they felt alienated and very harshly judged by medical providers for
their decision." Some couples
decide to bear the child because they are opposed to abortion and others are
diagnosed too late for abortion to be an option. In other cases, the diagnosis is not certain,
and parents are reluctant to abort the child.
Some want to hold and care for their infants, even if their lives are
very short.
Perinatal hospice services usually begin with
counseling for a pregnant woman in the second trimester when fetal testing has
revealed an incurable condition.
Neonatologist Susan Toce, medical director of the NICU at
The article says that anti-abortion forces
"are now beginning to promulgate perinatal hospice, not simply as an
option, but as a moral imperative."
But, the author says, "This is entirely at odds with the mainstream
hospice philosophy, which has no position on the abortion debate." Sumner says, "There is no agenda within
hospice to judge people.
We take them at their decision point and go from
there." But anti-abortion
organizations are promoting perinatal hospice as an alternative to
"partial-birth abortions," and one, West Virginians for Life,
pressured the board of directors of
Karen Kubby, director of the Emma Goldman Clinic
in Iowa City, thinks that parents expecting a child with fatal anomalies have
enough stress without being told that they have a moral imperative to bear the
child. "I'm really worried . that
putting the continuation of the pregnancy out there as a moral objective really
adds additional emotional and judgmental pressures on that family." The author says that perinatal hospice will
"figure more prominently" when the Supreme Court considers whether
the federal ban on partial birth abortions is constitutional later this
year. (Conscience, 9/2006)
PAIN
& PALLIATIVE CARE NOTES
* A Health Care Strategic Management article on
palliative care profiles
* The
* Chemists at
* The results of the 2005 BRFSS (Behavioral
Risk Factor Surveillance System) survey in Kansas shows that about 30% of state
residents have durable powers of attorney for healthcare and that 22% of adults
in the state suffer from chronic pain.
Links to the BRFSS data can be found on the LIFE Project home page at www.lifeproject.org. (LIFE Project Website)
HOSPICE
NOTES
* A study from Rhode Island's Brown University
found that in the US, nursing home residents who are enrolled in hospice are hospitalized
less often in the last 30 days of life than those not in hospice. The hospice residents are more likely to have
been diagnosed with cancer, while two-thirds of all nursing home residents have
not been diagnosed with cancer. (UPI,
8/18)
* Beginning January 1, 2007, hospices will have
to report more information on Medicare claims.
According to a July 28 CMS transmittal (Change Request 5245),
"Services at the continuous home care level of care must be billed using
separately dated line items that report the number of hours of care provided in
15-minute increments. CMS will no longer
permit rounding to the next higher hour.
In addition, Medicare claims with less than 32 units for the day will be
paid at the routine care payment rate." The Change Request is online at www.cms.hhs.gov/transmittals/downloads/R1011CP.pdf. (Eli's Home Care Week, 8/14)
* The hospice and home-care services industries
will continue to grow as baby boomers age, Don Schumacher, president and CEO of
NHPCO, expects. Ann Howard, director of
federal policy for the American Association for Homecare, expects that
segment's strongest trends to be the use of home telehealth, intense nurse
management, prevention of falls, medication management and specific
diseases. (Modern Healthcare, 8/7)
OTHER
NOTES
* Over a year ago, the
* Insurance companies and government experts
think that runaway healthcare costs could be reined in by the use of consumer-directed
healthcare, in which patients make more of their own medical decisions. But consumers don't like it, and a new national
study says that Americans are "unprepared" for it because "they
rely too heavily on the advice of their doctors and remain acutely sensitive to
out-of-pocket costs, which can increase dramatically under many of these
high-deductible plans." Researchers at the Vanderbilt Center for
Evidence-based Medicine say "It is not likely high-deductible 'health
savings accounts' and other financial strategies intended to engage consumers
more directly in decisions about their care will be effective." (Modern Healthcare, 8/21)
* New research on mice indicates that a
shortage of a brain enzyme, Uch-L1, which helps cells "get rid of
malformed proteins and maintain memory," may be implicated in Alzheimer's
disease. The research, originally
published in Cell, says that the functioning of mice who had the equivalent of
Alzheimer's disease for several months was "greatly improved" when
brain levels of the enzyme were increased.
No one yet knows whether the treatment would work in humans or if it is
safe. (Yahoo! News, 8/24)
* The results of a study describing the
"knowledge, attitudes, confidence, and experiences" of critical care
nurses about advanced directives and end-of-life decision making have been
published in Critical Care Nurse.
According to the results, "Nurses who had education in the
workplace on advance directives had higher knowledge scores and more positive
experiences with advance directives and end-of-life decision-making than did
nurses who did not," which may suggest that "staff education in the
workplace is an effective way to make nurses knowledgeable about advance
directives and end-of-life decision-making." (Critical Care Nurse,2006;26(4):30)
* Lu Molberg, head of
* A delegate to the Virginia General Assembly,
John Welch III (R), plans to introduce "Abraham's Law," which will
strengthen the rights of patients to determine their own treatment and limit
the rights of health providers and the government to interfere in that
process. The bill, named after
16-year-old Abraham Cherrix, who didn't want standard treatment for his
Hodgkin's disease, will apply to teenagers as well as adults. (Virginian Pilot,
8/24)
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* There will be no publication of The Hospice e-News on the week of September 12, 2006. *