Hospice eNews 
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What the Media Said about End-of-Life Care This Week
Week of
June 20, 2005
…a
service of
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MOURNING THE LOSS OF
END-OF-LIFE FUNDING
George Soros,
financier and founder of the Open Society Institute, says he’s “always believed
in the value of having beginnings and endings” in philanthropic work. He says he’s told his network of foundations
“that I take greater pride in ending programs than in starting new ones because
it’s so much harder.”
One article in the Chronicle of Philanthropy says
that Soros’ philosophy is facing a major test in the
awarding of the last of $200 million in grants by the Open Society Institute
and the Robert Wood Johnson Foundation for work on death and dying in the
Another Chronicle of Philanthropy article,
which calls the last decade a “golden age” for charities helping people deal
with terminal illnesses, says, “Finding the money to pay for new programs … is
proving extremely challenging.”
Susan Block, chief of psychosocial oncology and palliative care at
To bridge
the gap, the Open Society Institute not
only informs grant recipients years in advance of ending programs, it also
tries to line up other donors to take its place. Additionally, it created a Faculty Scholars
Program that awarded grants to persons promoting better approaches to
end-of-life care. It also gave money to
several specialty organizations focused on palliative care. RWJF funded training programs for faculty
members at
Soros says that the next step should be
lobbying, rather than philanthropy.
“It’s no longer a professional problem because the attitudes of
[medical] professionals are pretty unanimous.
It’s more of a political problem.”
Ira Byock,
director of the palliative care program at Dartmouth-Hitchcock Medical Center,
says, “The foundations dropped out too early.”
He credits them with being clear from the outset that “this was a
time-limited investment” and hopes that new grants from other donors will be “strategically
targeted” to build on earlier work, but not duplicate it.
Other organizations are active in funding end-of-life projects and are considering stepping up their support. The National Hospice Foundation raises money for NHPCO and will announce a $100 million capital campaign next year. The Kornfeld Foundation is “exploring the possibility of developing a research center for palliative care.” Atlantic Philanthropies is considering expanding its projects focused on the elderly to include end-of-life programs. (The Chronicle of Philanthropy, 5/12)
PAIN “MEMORY” IN BRAIN MAY BE
TREATABLE
Some pain may really be “all in the head,” according to a new JAMA article, “Pain and the Brain: Researchers Focus on Tackling Pain Memories.” That’s not to say that the pain is imagined, but “painful experiences can create changes in the brain – pain memories – through the same mechanisms that enable human beings to learn and retain memories.” Author Tracy Hampton says, “It is becoming clear that both physiological and behavioral therapies have varying but sometimes comparable effects on patients, and that individualized interventions may be the best way to relieve patients’ pain.”
There are several ways that the pain
memories are created,
* Sensitization occurs when persons become more sensitive to painful stimuli over a period of time. Imaging studies can show the increased sensitivity and researchers think that, “over time, the pathways that transport painful stimulation change.” The brain then “feels” more pain than a stimulus warrants. Pain may also be “felt” in the brain even when no pain stimulus comes from the original site, as happens in phantom pain syndrome.
* Operant learning can “teach” pain if, for instance, patients get positive reinforcement for experiencing pain. Studies of patients with chronic back pain found that those with “solicitous spouses” had an increased pain response compared to those with nonsolicitous spouses. Patients with solicitous spouses also had more brain activity in a region involved in nocioceptive pain, the anterior cingulate cortex.
* The anticipation of pain can also cause pain. Patients with electrodes attached to their backs who expected random electrical shocks move differently in anticipation of the expected pain.
These learning processes “leave
pain-intensifying memory traces in the brain that are usually not explicit, or
conscious.” Herta
Flor, PhD, of the Department of Clinical and
Cognitive Neuroscience at
G. Lorimer Mosely, PhD, of
Mosely also works with complex regional pain syndrome. Following a minor injury, a limb becomes swollen, sensitive and extremely painful. Though the reasons are unknown, having a patient “look at a mirror reflection of the healthy limb while moving both limbs can reduce pain and disability.”
Flor says there are “clear physiological changes in the brain” when persons begin to think differently about their pain. Flor’s work on phantom limb pain has shown that electrical stimulation or prostheses can change the region of the brain linked to the former limb. Phantom limb pain researchers are also working on N-methyl-D-aspartate (NMDA) receptor antagonists. Flor thinks that a combination of pharmacological and behavioral methods may be the best way to treat this and possibly other kinds of chronic pain.
Dennis Turk, PhD, of the University of Washington School of Medicine Department of Anesthesiology, believes that there probably won’t be a “one-size-fits-all remedy,” because people deal “with pain on an individualized level” and their coping responses are different. It would therefore be inappropriate to “assume that because a patient has a specific diagnosis that he or she is just like everybody else that has that same diagnosis, and if you just treat them physically or medically that takes care of all the problems.”
Turk “splits” (rather than “lumps”) patients into treatment groups based on their physical and psychosocial characteristics. Turk has studied patients with migraine headaches, chronic back pain, fibromyalgia, cancer, rheumatoid arthritis and temporomandibular disorders, and has found “a range of responses to similar types of pain in all these groups.” Believing that they require different types of therapies, he is testing his theory on fibromyalgia patients. They “all need information about fibromyalgia, they all need exercise programs, they all need to deal with some of the fears that they have about activities. But beyond that, you start adding on additional modules that match to psychosocial characteristics.”
Turk expects physicians to “embrace this concept of adding behavioral therapies to common medical treatments” for pain, because whatever the current treatment, “significant numbers of patients continue to have a considerable number of problems.” He thinks that it’s becoming “crystal clear” to physicians that they’ll have to “think beyond traditional modalities.” Mosely isn’t so sure, wondering if some physicians won’t see such methods as “undermining their own skill at treating the painful tissue itself.” He says, “’I think there’s far greater acceptance within the scientific community’ than among clinicians.” (JAMA, 2005:293:2845-2846)
PAIN NOTES
* “Beat Pain Step by Step,” an article in AARP, encourages consumers to use the lowest category of pain medicine that gives relief. From lowest to highest, their categories are topical therapies, acetaminophen, NSAIDs, nonacetylated salicylates (a subclass of NSAIDs that are aspirin variants), COX-2 inhibitors and opioids. (AARP, 7-8/2005)
*
* In
ADVANCE DIRECTIVES NOTES
* Experts say that although the interest in living wills was at its highest at the time Terri Schiavo died, it remains strong. Aging With Dignity’s president, Paul Malley, says, “Mail is coming to us by the truckloads.” Aging With Dignity has received more than 800,000 requests for the do-it-yourself form, “Five Wishes.” A number of organizations, including the Islamic Medical Association of North America and the Catholic Diocese of Arlington, Virginia, are offering forms that reflect their specific religious beliefs. (The New York Times, 6/17)
* The ACLU of
*
OTHER END-OF-LIFE NOTES
* An article in Slate magazine says that “a wildly disproportionate amount” of the billions of health care dollars spent each year is spent “during the final few tenths of a percent of life, prolonging the inevitable, agonizing end…” The author proposes “a life incentive. I urge the government to spend money helping us to live well. Offer everyone a one-time payment to spend in our prime years, asking in return that we waive our right to end-of-life aggressive medical treatment in favor of humane hospice care.” (Slate, 6/14)
* The Herberger College Department of Theater at
* Most media covered the release of Terri Schiavo’s
autopsy, which showed massive brain degeneration and found no evidence of
abuse. Many articles and editorials
wrote that the case should be considered closed and said that the matter should
be “put to rest.” Schiavo’s
parents disagreed with the results, and her brother, Bobby Schindler, said,
“We knew all along that Terri was profoundly brain damaged. We simply wanted to bring her home and care
for her.” (The
* In the not-too-distant future, science may come up with a “consciometer” – one or more brain tests that would measure consciousness. An article in Slate magazine says, “The ability to precisely detect and measure [consciousness] promises to alter our struggles with both end-of-life decisions, like those at issue in the Terri Schiavo case, and beginning-of-life decisions involving abortion.” The author goes on to say, “Families won’t have to agonize over whether an unresponsive loved one is conscious …, people filling out living wills will be able to specify their wishes based on measurable levels of conscious function. Ethical and legal precepts will rest on a clearly defined framework.” See slate.msn.com/id/2120872/ for the full article. (Slate, 6/14)
OTHER NOTES
* Prison
experts blame “longer sentences and truth-in-sentencing guidelines that
virtually abolished parole” for the rise in the number of older inmates, whose
cost of care is three times that of younger prisoners.
* The president of the
* Nursing schools face “fierce competition” for highly educated nurses but cannot afford the salaries offered by hospitals and pharmaceutical companies. Additionally, faculty members often work 60-80 hour weeks. The faculty shortage means that fewer nursing students can be admitted to nursing schools. Geraldine Bednash, executive director of the American Association of Colleges of Nursing, calls for more government spending, saying that the $4.8 million appropriated for the 2005 Nurse Reinvestment Act only results in 65 more faculty members nationwide. (Modern Healthcare, 6/13)