The
Hospice e-News
What the Media Said about End-of-Life Care This Week
Week of May 15, 2006
…a service of
PHYSICIANS
LEARN TO DEAL WITH PEDIATRIC DEATH AND DYING
As part
of an increasingly widespread initiative to better the care that children with
serious medical conditions are receiving throughout the nation, many hospitals
and educational programs for physicians are implementing programs to promote
“relational care” capacity of those in the medical field. An article in the Wall
Street Journal details the use of tutorials specializing in the
personalized care of families dealing with the loss or potential loss of a
child. Such programs are becoming more
and more prevalent throughout the country.
The primary goal of these programs is to help physicians and other
healthcare professionals feel more comfortable with dealing with families
suffering an enormous loss.
There are few situations as
devastating to a family as the loss or potential loss of a child, but, the
article reports, the latest investigations indicate that the experience and
preparedness of many of those in the healthcare profession are significantly
lacking. Physicians desire to be
sensitive to the needs of those in their care but do not want the immense
emotional strain of becoming deeply emotionally affected by each tragic event
that they encounter in their work.
Unfortunately, this often leads
to doctors not feeling able to undertake the most difficult conversations with
their patients and, when they do so, carrying them out unsatisfactorily
– often contributing to long-term emotional damage for the families they serve.
To help healthcare professionals become
more sensitive, many organizations are now beginning to provide their staff
with specialized training. These trainings include the use of
actors playing the part of families and children who find themselves with bleak
hopes for recovery. This provides professionals the chance to practice
delivering devastating news to the most vulnerable patients. One scenario, for example, involves a teenage
girl who is informed that her leukemia has returned and that she does not have
much time left. Another scenario
involves a family that needs to be informed that their five year old son has
been left brain-dead in a drowning accident.
The goal in all of this is to prepare physicians to provide sensitive
care in the worst of circumstances.
One organization, the Education Development Center, Inc., a nonprofit
based in
Researchers at
POLICY NOTES
* NHPCO is currently
monitoring S. 1955, “The Health Insurance Marketplace Modernization and
Affordability Act,” sponsored by Senator Mike Enzi (R-Wyoming). This bill is an effort to make health insurance benefits
more affordable to small businesses. One
of the effects of this bill, however, would be to eliminate state insurance
mandate for chiropractic services, mental health services, diabetes
and hospice coverage. NHPCO notes that
the bill does not impact Medicare Hospice Benefits. States that currently have mandated hospice
coverage include Arizona, California, Colorado, Kentucky,
Massachusetts, Maryland, Michigan, Nevada, New York, Virginia, and
Washington. To view the text of the bill
online, visit thomas.loc.gov, enter “S. 1955” (without
the quotes) in the Search box, and click the Search button. (NHPCO Public Policy Alert, 5/3)
* The Florida Senate passed a bill
which, if signed by Gov. Jeb Bush, will allow
for-profit hospice organizations to compete with non-profits for
BOOK NOTES
* Why People Die by Suicide, a recently released book by Thomas Joiner,
explores the factors that increase facility of suicide. Joiner, says a JAMA reviewer, draws on hundreds of academic sources, his clinical
experience and his own father’s suicide.
The book includes both a theory of suicidal genesis and clinical
prevention strategies. Joiner notes that
successive self-injury is a regular precursor among those who go on to fatal
suicide, hypothesizing that such self-inflicted damage reduces the individual’s
fear of bodily injury, thereby removing one of the key resistances to
suicide. The lack of a sense of
belonging and of connection to others, he notes, is a primary motivator of
suicide. Age is also a critical factor,
he observes; and suicide incidence increases with age and becomes most common
among those 65 or older. Joiner
discusses prevention and intervention, detailing interpersonal psychotherapy,
which aims to help the suicidal patient with one issue that causes him or her
great distress. The goal is to help the
patient find relief on this one issue in the hopes that this success could have
positive resonance throughout the patient’s life. Joiner also describes cognitive behavioral
analysis, as well as his own therapeutic approach, which targets the patient’s
perceived burdensomeness and lack of belonging.
(JAMA, 2006; 295:2082-2083)
* In Patient Autonomy and the Ethics of Responsibility, physician Alfred I. Tauber primarily blames physicians themselves for submitting to economic and organizational influences and allowing a culture that promotes a legal-contract model of the patient–physician relationship. “Law appears when trust fails,” he notes. Tauber seeks to correct the way law has come to overemphasize the right of the patient to determine the course of treatment, often at the expense of the patient’s need for compassionate treatment from his or her physician. Tauber details a strategy, says a NEJM review, to include greater sensitivity to moral values, increased ethics education and the creation, by institutional providers, of an ethical component to be included in the personal record of every patient. (NEJM, 2006;354:1966-1967)
* Death’s Door – Modern Dying and the Ways We Grieve: A Cultural Study is written by Sandra Gilbert, a
professor of English at the
RESEARCH NOTES
* Chronic pain
is a problem for both workers and their employers, says
* A study
of healthcare preferences and changes in preferences in older adults reveals
that “the acceptability of treatment resulting in certain diminished states of
health increases with time.” As health
declines, persons may become more willing to accept what others see as a poor
quality of life, because they do not perceive it as such. The study was conducted via in-home interviews with 226
elderly, community-dwelling persons with advanced cancer, congestive heart
failure or chronic obstructive pulmonary disease. The interviews were conducted at least every
four months for up to two years.
Patients rated whether treatment for their illness would be acceptable
if it resulted in 1 of 4 health states.
These changes in health care preferences, say the study’s authors, pose
a challenge to advance care planning. (Archives of Internal Medicine, 2006;166(8):890-895)
* A new
study indicates that most physicians are willing to discuss religion with
patients, but only half actually initiate such conversations. The survey, which was carried out by researchers at the
OTHER NOTES
* MayoClinic.com
provides public education that stresses the importance of preparing for
emergencies by gathering important medical information about loved ones. There are a number of things that one should know about
the health of one’s aged parents or others who are at risk for medical
emergencies, says the site. In order to
help doctors in providing care, the site suggests that information be readily
available, including the names of the person’s doctors, the person’s birth
date, a list of allergies, major medical problems, a list of medications,
religious beliefs (for example, in the case of blood transfusions), insurance
information, prior surgery and lifestyle information – such as whether the
person smokes or uses alcohol. The site
also suggests that patients and families complete advance directives.
(MayoClinic
Website, 5/5)
* The
Broadway production, “’Night Mother,” portrays a family dealing with the
impending loss of one of its members and their interaction with hospice. The production, with Mia Farrow playing the
lead, is interspersed with dark humor and addresses how children react to their
parents’ end-of-life concerns. (
* Dr.
Joseph Civetta, in the inaugural lecture of the Rowe
Lecture Series at the
FAMILY CAREGIVER
A two-part report issued this week, by the National
Center on Caregiving at the Family Caregiver Alliance
(FCA),“calls for significant improvement in healthcare and long-term care that
relies too much on families without recognizing and assessing family
caregivers’ own support and health needs.”
“Caregiver assessment,” the report says, “is
an essential component of comprehensive care for frail elders and adults with
chronic or disabling conditions, particularly dementia.” A communication from NHPCO notes that the
report specifically “references hospice as a model of family caregiver
assessment.”
Volume I, Caregiver
Assessment: Principles, Guidelines and
Strategies, contains an overview, a brief section on the background and
significance of the report, principles and guidelines for practice and
strategies and actions for change. This
volume “reflects the professional consensus achieved among nationally
recognized experts and stakeholders on fundamental principles and practice
guidelines that apply to a range of practitioners in a variety of
settings.” The strategies in the report,
which were developed at a National Consensus Development Conference are geared to
supporting caregiver assessment “as a basic component of service.” Volume II, Caregiver Assessment: Voices and
Views from the Field, contains background papers and personal accounts. Both volumes can be downloaded from www.caregiver.org.
The overview to the report says that, in spite of years
of research showing that family caregivers are under tremendous stress and in
dire need of support, “A major gap exists between research and practice… Few federal and state home and
community-based services (HCBS) programs uniformly assess the family
caregiver’s well-being and needs for support.”
One important way to address the research/practice gap is the
“development and dissemination of consensus guidelines.”
Data
to support the position of the authors includes the following facts:
* Eighty percent of
the nearly 10 million Americans who need long term care live at home or in
community settings rather than in nursing homes.
* Seventy-eight
percent of those getting care at home get no care from paid caregivers. Friends and family, particularly wives and
adult daughters, provide the care exclusively.
* Fourteen percent of
long-term care recipients get a combination of paid and unpaid care, with only
eight percent cared for exclusively by formal care.
* Estimates are that
44 million adults provide unpaid care to seniors and adults with disabilities
in their communities.
* The economic value
of unpaid caregiving is estimated at $257 billion per
year, dwarfing the costs of nursing home care ($92 billion) and home healthcare
($32 billion).
* Family members are
being asked to carry out roles formerly assumed by healthcare providers, “with
little or no preparation, training or support.”
* “The policy
direction to shift from institutional toward more home and community care …
depends greatly upon family caregiving.”
The guidelines call for assessment of all
family caregivers who come into contact with health and social services. The report recommends domains for assessment,
such as caregiver values and preferences and the caregiver’s well-being, with
several points of evaluation within each domain. Assessments should be done initially and as
new challenges and changes in the caregiving
situation arise. They should be
triggered by any indication from health professionals, family, friends or the
caregivers themselves that they have become or will become a caregiver.
Some caregivers may object to the term
“assessment,” and see it as a test of competency. The authors suggest using the word
“interview” instead. The discussion
should always be framed in the context of offering to provide help and
assessors should be trained in caregiver assessment.
The conference attendees recommended that, in
the next one to three years, support should be built for family caregivers,
demonstration projects should be developed, assessors should be trained,
caregiver support and assessment should be incorporated in Medicaid and home
and community-based services and family caregiver assessment should be
incorporated as a category of service under the National Family Caregiver
Support Program (NFCSP).
Within four to six years, the recommendations
include adopting caregiver policies at CMS, developing professional education
and training programs on caregiver assessment, changing record-keeping and
information systems to include data on caregiving and
developing a uniform data set of caregiving issues.
In conclusion, the authors say, “The adoption
of these principles and guidelines, embracing a family-centered perspective,
will require a fundamental change of thinking in policy and practice. It is hoped that the wide dissemination of
this consensus report will encourage the implementation of these caregiver
assessment principles and guidelines and the adoption of these recommended
change strategies within and across care settings to improve the lives of
IMAGING ALLOWS PATIENTS TO WATCH PAIN IN THE BRAIN
In “My Pain, My Brain,” in the May 14 issue of The New York Times, writer Melanie Thernstrom explores the use of functional magnetic
resonance imaging (fMRI) that allows patients to view
pain in their brains and attempt to change it.
A
Thernstrom reports that FMRI, with new
software, is taking moving pictures of activity in the brain. Researchers are attempting to “read” the
movies – to understand what is happening in the brain as a person experiences,
or changes the experience of, pain. The
brain’s pain network involves several areas of the brain, perhaps as many as
10, transmitting information back and forth.
The two pain systems, perception and modulation, have their own distinct
structures and also have some that overlap.
The pain modulation system inhibits the activity of the pain perception
systems. Chronic pain may involve either
an overactive pain-perception system or a poorly functioning pain-modulation
one.
The pain modulation system can be activated by stress
and, in certain circumstances, can completely block out any perception of pain.
Pain modulation is also affected by
belief. The placebo effect happens when
the brain shuts down pain when it thinks pain medication has been given, even
if it has not. The opposite effect, nocebo, will augment pain even if one is not being hurt. Some studies have shown that pain medications,
even opiates, achieve part of their effect by placebo. When pain subjects are given opiates, such as
morphine, they work much better if the patients are told that they’ve been
given a strong pain reliever.
Functional magnetic resonance imaging scans the rostral anterior cingulated cortex (rACC),
which “plays a critical role in the awareness of the nastiness of pain.” Pain, Thernstrom
reports, is a perception – a sensation may be felt as pressure or temperature,
but when it exceeds a certain threshold, the rACC is
activated and the sensation changes to pain.
Neuroimaging therapy (sessions in the fMRI machine in which the patient attempts to learn to
modulate pain) has been shown to be effective.
One group of chronic pain
subjects reported a 64% decrease in pain at the end of the study. But one concern of the researchers was whether
they were creating “the world’s most expensive placebo.” Control groups, using only pain-reduction
techniques or scanning without the patient viewing the images, had little or no
success in modulating pain.
The second phase of the Stanford study, now underway,
will assess the long-term practical benefits of neuroimaging
therapy. Patients will receive six
sessions teaching them to regulate pain and will be followed for six months to
see if “they can fundamentally change their modulation system so that it can
reduce pain all the time without constantly and consciously thinking about
it.”
Neurophysiologist Christopher deCharms,
a principle investigator of the study, says that the lessons may cause lasting
change because “the brain is a machine designed to learn.” The brain is soft-wired rather than
hard-wired, so when something is learned, new nerve connections are formed and
older unused ones wither away. Neuroimaging may someday offer advantages over drug
therapies. The receptors targeted by
drugs usually occur in multiple systems throughout the brain, which is one
reason why drugs usually have side-effects.
But neuroimaging therapy attempts to teach
control of one local brain region.
Thernstrom muses about whether neuroimaging may someday be used “as a vehicle for self-transparency”
– whether she could use it to read her own mind. Dr. Scott Fishman, chief of pain medicine at
the
RESEARCH AND RESOURCE NOTES
*
“Attitudes, Values and Questions of African Americans Regarding
Participation in Hospice Programs”, in the current Journal of Hospice and Palliative Nursing, reports on the focus
groups held in churches with large African American memberships. “The key findings include
a pervasive lack of information about hospice, producing numerous assumptions
about hospice services, as well as cultural and institutional barriers. Misconceptions about hospice included
assumptions that the care would be inadequate, people would die lonely, painful
deaths and that hospice was inaccessible to African Americans because of
cost. Themes of mistrust and
misconceptions permeated the data.”
The article may be viewed online at www.medscape.com/viewarticle/530363?src=mp. (Journal
of Hospice and Palliative Nursing, 2006;8(2):77-85)
* Understanding the Remittance Advice: A
Guide for Medicare Providers, Physicians, Suppliers, and Billers is available in PDF form on the
CMS website at www.cms.hhs.gov/MLNProducts/downloads/RA_Guide_Full_03-22-06.pdf
or by searching on “remittance advice,” without the quotes, at www.cms.hhs.gov. Printed copies may be ordered from the
Medicare Learning Network. (CMS Website)
* “Effectiveness of Collaborative Care for Older Adults With
Alzheimer Disease in Primary Care,” an article in the current JAMA, reports that patients in
collaborative care received more cholinesterase inhibitors and antidepressants,
than a control group in augmented usual care.
They also had “significantly fewer behavioral and psychological symptoms
of dementia” at 12 months and 18 months. Caregivers for the intervention group also
showed improvements in distress and depression.
“No group differences were found on the CCSD, cognition, activities of
daily living, or on rates of hospitalization, nursing home placement, or
death.” (JAMA, 2006;295:2148-2157)
* A review of clinical studies, published in The Cochrane Library, finds that medication is the best pain
treatment following surgery, but that music may be a good complement. Patients listening to music after surgery had
reduced needs for opiates and reported less pain than others who did not
listen. The benefits of music in
relieving pain may be too small to reduce drug-related side-effects but still
may be worth trying, “because it is non-invasive and inexpensive.” (Medicine
& Law Weekly, 5/12)
“Integrating Palliative Care for Liver Transplant
Candidates,” an article in this week’s JAMA, says that many patients
awaiting liver transplants are “too well for transplant, too sick for
life.” While there have been treatment
advances for end-stage liver disease, “patients with ESLD are often beset by
wide-ranging and distressing symptoms that markedly decrease their quality of
life. Physicians should aggressively
attend to these symptoms in order to maximize the patients’ quality of
life.” (JAMA, 2006;295:2168-2177)
OTHER NOTES
* EMT’s in
* The current issue of JAMA
has a poem on pain written by
Glatfelter Insurance
Group is the national sponsor of Hospice News Network for 2006. Glatfelter Insurance Group provides property
and liability insurance for hospices and home healthcare agencies through their
Hospice and Community Care Insurance Services division. Ask your insurance agent to visit their
website at www.hccis.com.