Hospice eNews 
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What the Media Said about End-of-Life Care This Week
Week of August
1, 2005
…a
service of
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NEW BOOK EXPLORES POWER
OF DREAMS NEAR LIFE’S END
A Newsweek
article entitled “A Dream Before Dying” shares
about the power of dreams for people close to death. In Dreaming Beyond
Death, Chaplain Patricia Bulkley says that many
dying persons have extraordinary dreams in their last days and weeks, but “all
too often, caregivers dismiss them as delusional or unworthy of attention.” Bulkley discussed
dreams with patients at
Though
stories and tales of “meaningful pre-death dreams” have existed from ancient
times in many religions and cultures, little systematic study has been done of
them. The article cites obvious
problems – the inability to enroll dying people in formal studies comes
immediately to mind. The percentage
of people experiencing such dreams is unknown, but scientists do recognize that
the dreams can have deep meaning.
Certain themes recur – journeys, reunions with deceased loved ones, stopped clocks and lights. One woman dreamed of a candle in her hospital window that is snuffed out and then spontaneously relights outside her window. One man decided that “somehow, we all belong to one another” after finding meaning in dreams of a square dance where partners left visible traces of movements.
But some of the dreams are very frightening, such as being caught up in tornadoes or riding in a driverless car. Rosalind Cartwright, Rush University Medical Center chair of behavioral sciences, says that these are dreams of unresolved issues. Scary as they are, they may ultimately help the dreamer find peace, Cartwright asserts, by forcing the dreamer’s attention to underlying problems.
These
pre-death dreams are also “more urgent, more vivid and more memorable than the
run-of-the-mill patchwork of dreams.
That’s not surprising, says Alan Siegel, psychologist at the
Still, Bulkley says, caregivers often don’t explore the meaning with dying persons, which is a loss on both sides. Discussing the dreams with family is a way to bring up the topic of death. Just talking about the dream offers a “simple way to articulate complex emotions – or, if the meaning of the dream is unclear, to fathom its purpose.” And when the dying person is comforted by the dreams, according to Bulkley, so is the family. “These are the stories that get repeated at funerals,” she says. “They become part of the family lore.”
Bulkley and Bulkeley “resist the notion that pre-death dreams prove the existence of God.” But dying persons often see them as “affirmations of faith.” One of Bulkley’s patients doubted the nature of God. She dreamed, three nights in a row, of “huge boulders that pulsated with an eerie blue light.” For her, they represented an unidentified divine being, one that was very real to her. She told Bulkley, “I don’t need to know anything more than that. God is God.” But in her final dream, the boulders turned into steppingstones and a golden light glowed in the distance. “It’s calling me now,” she said, “and I want to go.” The next day she died, at peace. (Newsweek, 7/25)
ANTICIPATORY MOURNING AND BEREAVED
ELDERS
The current issue of
the Journal of Hospice and Palliative
Nursing has articles entitled “Recognition and Support of Anticipatory
Mourning” and “Experiences of Bereavement in Rural Elders.” (Editor’s
note: Other articles from the same issue
are also included in this week’s HNN.)
Anticipatory
mourning, as described in the article by Karen A. Kehl,
includes “the experiences of emotional response to loss, planning and
reorganization, and facilitating the death.”
It is “a complex, multidimensional, and unconscious process of an
emotional response to the threat of loss.”
There is controversy, Kehl says, over whether
the phenomenon is real or constructed and whether it is “truly grieving for
future losses or grieving the daily losses as illness progresses toward
death.”
Recognizing
anticipatory mourning may be difficult for healthcare professionals, as family
members may try to hide their grief. It
shares many of the same aspects of ordinary grief, says the article, and “is
characterized by depression, preoccupation with the loss, and anticipation of
the personal adjustments necessary to live without the dying person.” Persons who experience anticipatory mourning
commonly are “preoccupied thinking of all the possible ways their family member
may die and wanting to know all the details of their condition.”
Men and women
experience anticipatory mourning differently, with men exhibiting more denial
and women more “despair, anger, somatization,
depression and death anxiety.” Cultural differences also come into play. Some cultures, such as African-American and
Asian-American, may have family-centered decision-making, rather than
individual. Some ethnic groups may
have grief over a homeland left behind interwoven into their anticipatory
mourning.
Anticipatory mourning
differs from postdeath grief because it is
time-limited – it ends when the person dies.
It may be more acute and intense than grief following a death. One complicating factor of anticipatory
mourning is that “family members cannot take on the roles usually seen in
bereavement because the loved one is still alive.”
Research, on the
effect of anticipatory mourning on the psychological state of the person who is
bereaved, is contradictory. While some
researchers found that postdeath grieving was
lessened if the person had experienced anticipatory mourning, others did not. T. A. Rando, editor
of Clinical Dimensions of Anticipatory
Mourning, found that “anticipatory mourning was positively associated with
preparedness at death,” and that “the more anticipatory mourning behaviors
exhibited, the less abnormal grief was present after the death.” Kehl says, “There
is no clear evidence that experiencing anticipatory mourning increases or
decreases distress after death.” Possible
negative effects of anticipatory mourning include the complication of postdeath grief by feelings of numbness or relief that
death has finally occurred.
While no research has
examined the effects of nursing interventions on anticipatory mourning, C. A. Corr and D. M. Corr, writing
in “Anticipatory Mourning and Coping With Dying,” suggests
guidelines for professions with clients undergoing anticipatory mourning. They include:
* Remember that both the dying
person and the anticipatory mourners are still living and may have unfinished
business.
* Remember that anticipatory
mourning is multidimensional and needs a holistic, possibly multidisciplinary,
approach.
* The experience of mourners
will change during the dying process.
* Use social networks to
support individuals, but recognize that persons mourning the same dying person
may have different networks.
* Pay attention to the
mourner’s grief reaction and coping processes. Listen attentively and help the individuals
determine priorities for managing their experiences.
* Express confidence that
“much can be done to minimize the distress of anticipatory mourning.” (pp. 206-211)
In “Experiences of
Bereavement in Rural Elders,” authors Richard H. Steeves
and David L. Kahn report on a longitudinal study of bereavement in 15 older,
rural southerners of low socioeconomic status.
The literature review found some contradictions. Some reports say that the death of a spouse
has a significant negative effect on elders, while other reports say,
“Bereavement is not as detrimental to the elderly as other conditions they
faced” or “Bereavement makes little difference in their lives.”
The researchers
identified five themes that recurred in discussions with the bereaved persons:
* Two common metaphors used to talk
about grief were “an alien, malignant, entity that would attack people,”
and “negatively charged energy” that built up until discharged, usually by
crying.
* All had work that had to be
done even though they were bereaved and retired, but needed extra income to
make ends meet. Other work to be done
included “busy work” to keep them occupied after the death, the work of the caregiving they had done and the work of arranging the
funeral and burial and tending the grave.
* Home concerns focused on
conflicts over property ownership and control, even though the participants
were not wealthy. An additional home
concern was over being allowed to live alone.
Most could have used additional assistance with home chores but were not
willing to give up their independence.
* Mourners talked about “getting on”
with their own lives and, by 18 months after the death, their daily lives
had little to do with managing grief even though their sense of loss had not
gone away. Most felt themselves to be
“significantly poorer” after the death of the spouse and sorely missed the lost
Social Security check. Most participants
had at least one chronic illness.
* The fact that “one is ultimately
left unsatisfied in the face of grief” was the last theme identified. One woman said, “Man points, God
disappoints.” “She wanted her husband
not to have died, she wanted death itself to be annihilated, and she wanted
comfort for her grief,” the authors say.
“These are the things that she pointed to. In her view, God did not satisfactorily give
any of these.” Though not always
grieving, she would always be disappointed.
The researchers suggest
that a systematic meta-analysis of the growing body of bereavement research
“could lead to the development of screening to determine who needs intervention
and of targeted interventions for those who need it.” (Journal of Hospice and Palliative Nursing, 2005;7(4):197-205)
AUTHORS ADDRESS EOL NEEDS FOR TIBETAN BUDDHISTS
In “End-of-Life Needs
of Patients Who Practice Tibetan Buddhism,” author Marilyn Smith-Stoner,
PhD, RN, relates that Buddhists “practice” the death experience, and “are
encouraged to consider various death scenarios and explore what the actual
experience of death would be like.” Caregivers
should be aware that it is considered unhelpful for friends and family to cry
in the presence of or disturb the dying person, and those who cannot remain
calm and meditative in the presence of the dying person may leave the room.
Stoner also says that
though “Buddhists understand that suffering is a part of life, generally there
is a desire to avoid suffering when possible.”
But careful assessment is needed before administering analgesics and
sedation, as many Buddhists will “want to be as comfortable and as alert as
possible, so they are able to continue to practice and visit with loved
ones. Care is also needed with all
medications, as some Buddhist practitioners may see a Tibetan doctor as well as
a Western physician and may be taking herbal medications.
Suggestions for
ensuring a peaceful dying include having healthcare personnel turning pagers
and cell phones to “vibrate” while in the room, allowing an altar in the room
that is in the patient’s line of vision and not making or taking phone calls
while in the room. During the actual
dying process, avoid touching the hands or lower parts of the body, tap the top
of the head gently to focus the patient’s attention upward and leave the body
undisturbed for as long as possible after death. ((Journal
of Hospice and Palliative Nursing, 2005;7(4):228-233)
PAIN NOTES
* Researchers
at
* The Partners for Understanding Pain coalition is inviting pain management advocates to join them in visits to Congress on September 14. They will be encouraging Congress to support the National Pain Care Policy Act of 2005 (HB 1020). A guide for preparation for the Congressional visits is at www.theacpa.org. (American Chronic Pain Association Website)
*
* The
spring issue of Practical Bioethics, a quarterly publication of the
Center for Practical Bioethics in
* Though it has yet to file any charges against him, the DEA has seized 72 patient charts from neurologist Richard Nelson and confiscated his “drug-dispensing permit.” Nelson, who lives in Billings, Montana, specializes in pain management, has spent $20,000 on lawyers and says, “My practice is sunk.” The article says that, over the past six years, more than 5,600 physicians across the nation have been investigated, because they were suspected of “drug diversion” and more than 450 have been prosecuted. One doctor who is closing his practice to new pain patients said, “It is impossible to be sure that a patient is not diverting any of his medication.” (Time Magazine, 7/25)
* The recently released National Women’s Health Report, “Pain & Women’s Health,” warns “that the under-treatment of chronic pain in women is a severe problem in our society and leads to lack of productivity and a reduced quality of life.” The report contains articles on COX-2 inhibitors, major depression in chronic pain sufferers, migraine headaches and pain management in older adults. See www.healthywomen.org for a free copy of the report. (PR Newswire, 7/20)
* The New York Times Op-Ed Columnist,
John Tierney, says the DEA and local police departments did their level best
during the drug wars of the 1980’s and 1990’s, only to see cheaper, purer drugs
hit the streets in greater quantities than ever. So, under pressure from Congress for results,
they “defined deviancy up.” Going after
doctors had several advantages over going after crack dealers – they were
in the phone book, unarmed, kept office hours and records of prescriptions and
had assets that could be seized by the police.
Getting treated for pain has become much more difficult, but the
White House’s drug policy agency reported progress after a field survey on drug
use in
RESOURCE NOTES
* The current issue of PainAdvocacyCommunity
is devoted to effective pain management in the face of regulatory issues. The issue is online at www.partnersagainstpain.com/painadvocacycommunity/pdfs/Vol0512.pdf. (PainAdvocacyCommunity, 7/2005)
* The Hospice Wage Index for Fiscal Year 2006 is now available for public
inspection at the Federal Register office and will be published on August
4. The final rule is online at www.cms.hhs.gov/providers/hospiceps/cms1286f.pdf. NHPCO members can see that organization’s
comments to CMS about the rule at www.nhpco.org/i4a/pages/index.cfm?pageid=4333. (CMS
Website; NHPCO Website)
END-OF-LIFE NOTES
*“Home Care and
Hospice Nurses’ Attitudes Toward Death and Caring for
the Dying” examines a palliative care education intervention. The research findings “partly supported the
hypothesis that home care nurses who participate in palliative care education and
in writing a reflective end-of-life narrative will have less negative attitudes
toward death. It also partly supports
previous research showing that nurses who participated in a palliative care
education program had more positive attitudes toward death and toward caring
for terminally ill patients than they had before participation.” (Journal
of Hospice and Palliative Nursing, 2005;7(4):212-218)
* “Family Stress and Advance
Directives” reports on a comparison of stress levels of families of terminally
ill patients with advance directives to those without. The literature review disclosed, “With the
absence of advance directives, families were more likely to push for prolonging
life for the patient even when the treatments were not working and the patient
was suffering. When the patient had a
written advance directive to guide the family, families were
more comfortable focusing on the patient’s quality of life as the guide for
deciding when to stop life-sustaining treatments.” Families of patients with advance
directives reported less distress than the families of patients who did not
have them. (Journal of Hospice and Palliative Nursing, 2005;7(4):219-227)
* Oregonian Francesca Hartman, who chose to end her life
by refusing hydration and nutrition, died last week after fasting for 36 days. Her daughter, Diana Vitellis,
said, “It was very peaceful. She just
eased out. It was exactly what she
wanted.” Death by refusing food and
fluids “has happened since the beginning of time,” says Dr. Susan Tolle, director of OHSU’s Center
for Ethics in Health Care, “but the clarity of the person’s intent is rarely so
strong and articulate.” (The Oregonian, 7/29)
* Smaller is better when it
comes to end-of-life residential care, says a Newsweek article on the National Green House Project. No more than 10 residents live in houses with
private rooms and baths, get to choose and help cook their own meals and can
have pets and plants. Costs for the
home in
* Dylan Thomas’s advice to his
dying father to “rage, rage against the dying of the light” is a costly
proposition these days if translated into aggressive end-of-life care. “Going gently,” on the other hand, “not only
leads to an arguably better death but costs far less financially and
emotionally,” says an article in the
* Airing last week on PBS,
“The Self-Made Man” is a documentary about Bob Stern’s life and his decision to
commit suicide rather than have surgery for an aortic aneurysm and face
treatment for cancer. The PBS
website, at www.pbs.org/pov/pov2005/theselfmademan/,
has a synopsis of the story, links to find local broadcasts, a place to share
personal stories online and a link to the Suicide Prevention Hotline. The USA
Today article synopsizes the story and examines the question of whether
suicide can ever be rational. (PBS Website;
OTHER NOTES
* Oregon Congressional Democrats, Senator
Ron Wyden and four Representatives, held a press conference on July 20,
announcing that the group had filed a brief with the US Supreme Court reminding
the court that questions of assisted suicide are a matter for the states, not
the federal government. A second
purpose of the brief was to “reinforce the fact that the Controlled Substances
Act is designed to pursue drug dealers and people involved in criminal
activity.” The leaders fear that actions
by the Bush administration “will have a chilling effect on pain management, not
just in
* Francesca
Hartman, the
* “Medicare and Chronic Conditions,” in the current NEJM, asserts that the original orientation of Medicare toward the “treatment of acute, episodic illness” will have to change if “the Medicare program is to be truly responsible to its millions of beneficiaries who have chronic conditions, especially those with multiple coexisting illnesses.” Saying that Medicare cannot do this alone, the authors call for changing “the delivery system, the research infrastructure, clinical education, and methods of financing medical care in order for the health care system to become more responsive to the needs of people with chronic conditions.” (NEJM, 2005;353:305-309)
* ICE is
“gaining momentum on both sides of the
* Responding to John Tierney’s
“Handcuffs and Stethoscopes” article in The
New York Times (see HNN,
7/26), Joseph D. McNamara writes the editor, “As someone who spent more than
half my life as a police officer, I regret that my country, when it comes to
drugs, resembles Nazi Germany. Everyone is a potential enemy. Schoolchildren are trained to turn in their
parents and friends, neighbors report on one another, and lawyers, doctors and
clergy have become informants… It is
inevitable, as Mr. Tierney explains, that by trying to control through criminal
law which chemicals free citizens put into their bloodstreams, the sacrosanct
relationship between doctor and patient is also jeopardized.” (The New
York Times, 7/26)
* Dr. Richard Friedman, in a New
York Times article, says “There is nothing in the Hippocratic oath that
tells doctors what to do when they make a mistake with a patient,” and medical
school curricula and residency training programs don’t have much more. Friedman says, “Everyone assumes that the
ever-present threat of litigation has made doctors more anxious about admitting
error … but doctors have always been tight-lipped about their mistakes.” Friedman adds, “Many lawyers would
disagree, but doctors ought to let their patients know when they've erred; it
humanizes them and builds trust.” (The New York Times, 7/26)
* At the June AMA meeting, the AMA and the
Association of American Medical Colleges called for the improvement of “health
care by making changes throughout the educational continuum, from undergraduate
medical education to continuing medical education.” Palliative care is specifically cited as one
of several “new or heightened practice demands that the next generation of
physicians will face.” (JAMA, 2005;294:416-417)
* The