Hospice eNews 
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What the Media Said about End-of-Life Care This Week
Week of
August 22, 2005
…a
service of
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FAMILY MEMBERS RATE QUALITY OF DYING IN ICU
An
article in Chest examines the quality of dying in ICU as rated by family
members of the decedents. Ninety-four
family members of 38 persons who died in ICUs affiliated with a university and
an academic VA
Among the decedents,
39% died at the VA, 68% were men, the average age was 59, and the median length
of stay in the ICU was six days. Results
reported by the family members included the following.
* Symptoms
were poorly controlled. Only 47% had
their pain under control most or all of the time, and
only 3% were breathing comfortably most or all of the time. The authors say, “The medical record was
remarkable in the near universal absence of data regarding assessment of pain
and other symptoms or in how sedatives and analgesics were titrated to symptom
relief.”
* Twenty-four percent were never aware that
they were dying, 34% were aware of dying only in the last week of their lives,
and 76% were able to talk with their families in an understandable way in the
last week of life.
* Higher ratings were given
for the quality of death when pain was controlled, when there was a
“‘preparation for death’ aspect of the experience of dying” and when there was
a concern for the “whole person.”
* The
study revealed a correlation between
the rating of the quality of dying and the length of time that the respondent
had known the decedent.
* There
was a mean ICU QODD score of 60 on a
100-point scale. The quality
of moment of death got 67 of 100 and the ICU as a place of death 61 of 100.
* There
was a low rating of quality of the last
week of life – 32 of 100 points.
Strong correlations
with the QODD score were found with “feeling at peace with dying, having
control of events, being unafraid of dying, keeping dignity and self-respect,
and finding meaning and purpose.”
Factors with no apparent important associations with death in the ICU
included days in the hospital or ICU, DNR orders that were written within two
days of death, use of ventilators or dialysis, frequency of visits with family
members, decreased functionality, state of consciousness at the time of death,
presence or absence of another person at the time of death and whether or not
there was a family conference. There was
no correlation of QODD scores with demographic characteristics and no
differences in either QODD or other quality ratings in the two hospitals and
four ICUs studied.
The authors note
limitations to the study. Only two
hospitals in one geographic area were included, and the results may not be
applicable to other regions or healthcare systems or to deaths outside the
ICU. Additionally, the study was limited
to patients who had been in the ICU at least three days, where there was a
relatively low response rate and “the potential for nonresponse
bias.”
The article concludes
by saying that “development and testing of reliable and valid tools for
assessing the quality of the end-of-life experience in the ICU will improve our
ability to evaluate interventions. Our
study suggests the ICU QODD instrument may provide such a tool, but further
study is needed to determine its usefulness.”
Additionally, the writers caution against focusing solely on better
symptom assessment and management to improve end-of-life care, since this study
suggests that “assessment and improvement of whole-person concern and
preparation-for-death aspects of the dying experience are important to the
quality of dying.” (Chest, 2005;128(1):280)
AUTHORS PROMOTE PRACTICE-BASED RESEARCH FOR
EOL
Cancer
Control includes an article entitled “The
Practice-Based Research Network as a Model for End-of-Life Care Research: Challenges and Opportunities.” Jean S. Kutner and
others author the study. Practice-based primary care research networks
(PBRNs), which “provide access to phenomena often
neglected by researchers but of great importance to those directly affected by
the issues being studied,” provide “an essential model for conducting
end-of-life research.” PBRNs have emerged as “important research laboratories” for
assessing the impact and processes of primary care. Because most patients, including those
with advanced cancer, are not treated in academic institutions, PBRNs provide a model for studying and improving the
patient experience. The
Population-Based Palliative Care Research Network, PoPCRN,
is used throughout the article as an example of issues relating to PBRNs.
The authors define a PBRN as “a group of
clinicians, practices or institutions that are devoted primarily to the delivery
of patient care and are affiliated with each other in order to investigate
questions related to community-based practice.”
The networks are “usually formal collaborations between
community-based physicians and academic institutions” in which the physicians
collect the data and the academic staff analyze, interpret and publish the
results.
PBRNs
do not usually study single diseases, but rather a range of conditions, “may
conduct cross-sectional or longitudinal descriptive studies, and may use
quasi-experimental methods as well as conduct randomized clinical trials.” The goal is to involve community-based
physicians in studies that are directed by experienced researchers. One description of PBRNs
says that they are “as essential to advancing the scientific understanding of
medical care as bench laboratories are to advancing knowledge of the basic
sciences.”
PBRNs
have several essential roles, more than one of which may be filled by the same
person: network director, research
director or methods expert, research coordinators and/or assistants, writers
and support staff for statistics and information systems. PBRNs
need a governance process if they are to exist beyond a single study and
most exist in conjunction with an academic institution or professional
society. They face many regulatory
issues common to healthcare institutions, such as review by an
institutional review board and compliance with HIPAA regulations.
The authors write
that the network must be “cared for and fed” by providing specific and
timely results to participants, assisting with the use of data for quality
improvement projects, providing in-services on relevant topics, conducting
literature searches for network members, considering the research interests of
the clinical staff, adapting the process to clinical routines and not placing
excessive demands on clinical staff. The
infrastructure must be funded, as well as individual studies. Two issues must be addressed which relate to
research quality: 1) “How can PBRNs conduct high-quality studies in the midst of other
competing demands of busy medical practice?” 2) “What needs to be in place to
enhance the validity and applicability of our PBRN findings?”
The article says that
“improvements in end-of-life care will require an active program of research,
and this research will need to involve hospice.
Research on pain management, other symptoms, caregiving
or bereavement that has been conducted in acute care settings may not be
applicable to hospice patients.” The
authors also assert, “It is essential to evaluate the needs of patients and
their caregivers and the effectiveness of current end-of-life and palliative
care. It is also important to guide
practice in order to further development of end-of-life and palliative
care.”
The authors note the
active and supportive role that the
GERIATRICIAN SHARES CONCERNS ABOUT ELDER
CARE ISSUES
The medical director
of a skilled nursing unit (SNU) in a
Winakur
asserts, “Hospitalizations are the most dangerous times for the elderly” and,
given the array of things that can go wrong, “it is almost a miracle that any
elderly patient gets out relatively unscathed.” When his father’s physician wanted to
transfer his father to Winakur’s own SNU after a
hospitalization, Winakur refused and took him
home. “I knew that if I didn’t get him
out of the hospital at that moment, he would never come home again,” Winakur said. “The
SNU would have been a way station to a custodial nursing home.”
Winakur
adds, “From my years as a geriatrician and now as the son of an ‘old-old’ man,
I recognize that there is one inescapable truth: Our parents will become our children if they
live long enough. Perhaps if we looked
on our elderly in this way, we would be kinder to them.”
An interview with Winakur also aired this week on NPR and is available at http://www.npr.org/templates/story/story.php?storyId=4805305. The NPR website also includes a link to his
essay, “What Are We Going to Do With Dad?” and the
full on-line text at Health Affairs. (The
PAIN NOTES
* A new study linking
non-aspirin painkillers and hypertension means that women who take painkillers
such as Tylenol daily should monitor their blood pressure. Tylenol has generally been considered free of
risk of hypertension, unlike NSAIDS, but the study found that women taking
Tylenol were twice as likely to have elevated blood pressure. The results were initially published in the
journal Hypertension. (CNN
Website, 8/16)
* The Center for Medical
Cannabis Research has several placebo-controlled clinical trials to determine
whether marijuana is effective in treating neuropathic
pain, spasticity from multiple sclerosis and other
pain. Another trial by oncologist
Donald I. Abrams of the University of California, San Francisco, found
marijuana to be effective against neuropathic pain in
HIV-infected patients. GW
Pharmaceuticals of Britain manufactures Sativex, a
liquid cannabis extract that is sprayed under the tongue. The medication has been licensed in
* The National Study to Validate the
Long-Term and Post-Acute Care Quality Indicators Derived from MDS, which
examined the quality of data of pain levels of patients in nursing homes
derived from Minimum Data Sets, found that more analysis is needed. Characteristics of facilities, such as
hospice use or location of the nursing home, “are systematically associated
with overrated/underrated pain and may bias pain quality indicator (QI)
comparisons.” (Health Services Research, 2005;40(4):1197)
RESEARCH AND RESOURCE NOTES
* An article in The New York Times reports on a new
study that found that “doctors and hospitals fail with alarming frequency to
deliver essential lifesaving treatments for some of the most common causes of
death – heart attack, pneumonia and heart failure.” The treatments, such as beta blockers and
aspirin for heart attacks or antibiotics and immunizations for pneumonia, are
not controversial, but “have proven devilishly difficult to deliver reliably in
the chaos and complexity of a hospital.”
(The New York Times, 8/21)
* Leaving This Life with Hospice: Stories of Wonder and Hope, by Margaret
Ledger, is a bridge of the gap between “medical books on dying and a psychic’s
book.” Ledger’s experience with her
mother’s death led her to become a hospice volunteer. Ledger built up a “store of ‘special
stories’” about the patients she worked with.
(
* “A Lion in the House,”
coming in the spring of 2006, is a documentary that traces six years of five
families in their battles against childhood cancer. Community Engagement Grants of up to $10,000
are available to develop activities related to the film’s public information
campaign. See www.itvs.org/outreach/lioninthehouse
for more information. (ITVS Website)
* A new search tool is available on the
Kaiser Family Foundation website, providing “faster and easier access to the thousands of Foundation reports, news
summaries, webcasts and data and analysis on
Medicaid, Medicare, HIV/AIDS, the uninsured, health insurance, disparities in
health care, public opinion and more.” See www.kff.org.
(E-mail from the Kaiser Family
Foundation, 8/17)
* New heart failure guidelines
have been released by the American Heart Association and the
OTHER NOTES
* Mary Duffy may have lost her dignity when
one of a group of doctors who filed into her room removed her blanket, pulled
her nightgown from her shoulders, and began lecturing about carcinomas, all
without speaking to her, but she didn’t lose her sense of humor. His first words to her were, “Have you passed
gas yet? “No, I don’t do that until the
third date,” Duffy replied. The article
explores the “degrading shift from person to patient” that occurs throughout
the medical system. (The New York Times, 8/16)
* A letter to the editor of JAMA says
that none of the methods used for
identifying cause of death for case-mix classifications – death certificate,
last major diagnosis, cost method – is adequate to determine the “complete
story of a decedent’s cause of death,” especially since many deaths have “multifactorial causes.” The writer says that “researchers should
consider the objectives of their study, the feasibility of applying each
method, and the reasons they need to identify cause of death when deciding
which method to use.” Readers, then,
should consider these issues when interpreting the data. (JAMA,
2005;294:793-794)