Hospice eNews
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What
the Media Said about End-of-Life Care This Week
Week of April 25, 2005
…a service of
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HOUSE
COMMITTEE HEARS BIOETHICS EXPERT
The House Government Reform Committee’s Subcommittee on Criminal Justice, Drug Policy and Human Resources recently heard testimony from Dr. Arthur Caplan, Chair of the University of Pennsylvania’s Department of Medical Ethics and Director of the University’s Center for Bioethics. In his address about making healthcare decisions for persons who cannot make them for themselves, Caplan disagreed with some other presenters on the issue of whether or not the current system is broken. He called that argument, as well as the one that asserts that people with disabilities and impairments face biases in their treatment, or that the system seeks “to save money by rushing such persons off to an early grave,” deeply flawed.
Caplan said, “Let me simply state that
there is no evidence, none, that any health care institution is seeking to end the lives of any American for reasons of
cost. I do not think there is any effort
underway for example to limit or stop care for the thousands of Americans who
are now in PVS states or severely brain damaged states in our nursing homes or
hospitals.” Caplan
also asserted that he does not believe “that the system of protections in place
for those who once could but can no longer as a result of illness or injury
speak for themselves in our health care system is seriously broken or
malfunctioning. There is a system in
place and, despite all the attention that the case of Terri Schiavo generated
suggesting otherwise, the system has worked well and continues to work well in
insuring that the rights of those to have or not have medical treatment
consistent with their personal values and choices are respected.”
The first question that Caplan addresses is, “What needs to be done to protect the rights and interests of those Americans who cannot care for themselves?” Caplan asserts that the system that is in place, and has been since the case of Karen Ann Quinlan, works well and doesn’t need changing. The key provisions of this system are the rights of liberty and privacy, and the system has the protection that a family member may speak for a person when that person can no longer speak for him/herself. He says that the order or precedence for decision making for incapacitated persons should be spouse, then adult children, then parents or siblings.
Caplan says, “It
would be wrong and indeed unconstitutional to create any presumption in favor
of medical care or treatment for a once competent person who can no longer
communicate. What must be created is a legal system that listens carefully and
intently to try and discern what a person unable to communicate would say about
their wishes and choices. Only if no
such information can be discerned would any presumption make any sense and even
then Congress would have to act with great care in trying to decide what can be
presumed about medical care for every American given the range of values and
views that exist in this area.”
Caplan’s next addresses whether, in the light of the Schiavo case, our existing mechanisms are adequate to protect persons in a persistent vegetative state and what protections “exist for those who are incapacitated to ensure that their constitutional rights of due process are met?” Caplan cites two mechanisms that are in place and asserts that they do work well: professional ethics of healthcare personnel and institutions, and state courts. His conclusion: “There is absolutely no evidence that this system is broken or in need of any intervention by Congress. There is some reason to believe that any attempt to do so would create far more harm than good.”
Specifically defending hospice, Caplan
said, “I defy critics of hospice or any member of
Congress to demonstrate an instance where a hospice has let someone die who is
suffering or in pain. Hospice is one of
the greatest achievements of American health care. It should not be disparaged. It ought to be allowed to grow and flourish
in any way that Congress can.”
Last, Caplan asks if “the various legal instruments used to express the wishes of the incapacitated are sufficient to guide their care?” “Little systematic information exists,” says Caplan, on how many people have them or how often they are updated. Caplan says there is little evidence to suggest that they work well, since their existence may be unknown, they may be too vague, they do not transfer from institution to institution and physicians may ignore them. Caplan suggests that we use a computerized registry, not require the use of lawyers to prepare durable powers of attorney and advance directives and make sure that everyone is offered a chance to “fill out such a document in an informed manner” when entering a hospital or nursing home, or when entering the military or registering to vote. (Congressional Quarterly, Inc., 4/19)
MULTIPLE
ARTICLES IN NEJM EXAMINE PAS, SCHIAVO
& EOL
“Physician-Assisted Suicide –
Okie reviews the history of Oregon’s Death
With Dignity Act, its key provisions and the statistics about who chooses to
use physician-assisted suicide. She
notes that
Okie says, “There is suggestive evidence
that the widely publicized debate about the assisted-suicide law and its
enactment contributed to overall improvements in end-of-life care in
Some physicians oppose the law, fearing
that a wish to use physician-assisted suicide may reflect a patient’s treatable
depression or a lack of support.
William L. Toffler, of
Dr. Joanne Lynn, senior researcher with the
Rand Corporation and director of the Washington Home Center for Palliative Care
Studies, says that
Dr. Linda Ganzini, also of Oregon Health Sciences University, also says that the state’s excellent palliative care system keeps the assisted-suicide rate low. “Your safety net is your end-of-life care and your hospice care,” she says. “It’s not the safeguards that you build into the law.” (NEJM, 2005:352(16):1627-1630)
RESOURCE NOTES
* Ted J.
Kaptchuk, of
* NHPCO
has teamed with WebMD to provide quality, reliable information for healthcare
professionals and consumers on end-of-life care options. NHPCO and VistaCare are funding the program
through
END-OF-LIFE
NOTES
* Hospice
Foundation of
* NPR’s Julie Rovner reported on Congress’s consideration of end-of-life issues following Terri Schiavo’s death. Speakers included J. Donald Schumacher, head of NHPCO, and Dr. Joanne Lynn, senior researcher with the Rand Corporation. A recording of the program is online at www.npr.org/templates/story/story.php?storyId=4605587. (NPR’s All Things Considered, 4/18)
* In the
weeks before and after Terri Schiavo’s death, the
*
* US
Representative Dave Weldon (R-Florida) is writing a bill requiring hydration
and nutrition for all incapacitated Medicare or Medicaid patients unless they
have advance directives or “there is no doubt they are dying.” Similar legislation is being considered in
* In “The Million Dollar Question,” an article in this week’s NEJM, Dr. Timothy Quill reflects on the movie Million Dollar Baby, and on his own experiences as a physician. Quill is a self-proclaimed “advocate for greater patient choice about end-of-life issues.” Quill highlights patients’ need to have “someone with whom to share their dilemma.” The most important issue raised by the film, says Quill, is “the danger of secrecy.” Quill says, “The absence of health care providers in the film should be as morally disturbing as the actions of Eastwood’s character.” (NEJM, 2005;352(16):1632)
PAIN NOTES
*
* Paula Abdul was recently diagnosed with reflex sympathetic dystrophy, a neuropathic disease that causes intense pain. A new treatment regimen that includes Enbrel ended her 25-year battle with chronic pain, which was caused by a cheerleading accident. Enbrel is used to treat arthritis and psoriasis. (People, 5/2)
OTHER NOTES
* A recent article in the Kansas City Star examines a wide variety of caskets that are
available. There is a cardboard casket that your loved ones can
write messages on and it has a pine board base, so it will hold a body. You can rent a casket with a removable liner,
so you can be displayed in one casket and buried in a cheaper one. Or you can build your own, or purchase one like
a giant cigarette or a sports car.
Joshua Slocum, executive director of the Funeral Consumers Alliance,
says, “The only thing a casket has to do is to look nice to you, in terms of
your personal taste, and to hold the body until it gets to the grave.” (
* A
recent article in the Buffalo News was
titled “Spiritual Support Softens the End of Life.” The article explores the importance of
spiritual support for dying patients and the role of faith communities to senior
citizens. (
* By
2030, seniors will outnumber kids in 10 states.
Political dynamics will change as the old and the young compete for tax
dollars. Richard Cauchi, health
program director of the National Conference of State Legislatures, says, “As
you reach the end of life -- the last year or last two years -- the use of
medical care is very intense. If the
85-plus (population) can be projected accurately, that certainly is where the
major dollar impacts will be felt.” (
*
* Bills
before both houses of the
* In
response to numerous allegations that Terri Schiavo had been abused or
mistreated, Judge George Greer released nine reports compiled by the Department
of Children and Families.
Eighty-nine complaints are recorded in the reports, from poor tooth
care, unneeded insulin injections to puncture wounds. Investigators
found “no merit” to any charge, were often were complimentary of the care
Schiavo received, and they never found any evidence of Michael Schiavo
withholding care from his wife. (
* The Federation of State Medical Boards released its annual compilation, which showed a 20% increase over 2003 numbers in “prejudicial actions” (revocation of licenses, reprimands and suspensions) issued to physicians. “The leading reasons for the harshest form of punishment were substance abuse, unprofessional conduct and controlled-substance violations.” (Modern Healthcare’s Daily Dose, 4/18)
* Federal
and state regulations require that hospitals, nursing homes and hospices
dispose of certain unused medicines once a month and most of the medications
are flushed down toilets. Rising
healthcare costs and contamination of the nation’s waterways are forcing a
re-examination of the rules, possibly allowing re-dispensing of medication that
is unopened or has not been out of caregiver supervision. (The