Studies Look at High Cost of Care, Ethnic Disparity,
Other Differences in Final Weeks of Life
Almost one-third of Medicare expenditures
attributable to the 5% who die each year; about 1/3 of expenses in last
year are spent in the final month
March 9, 2009 – Dying, we might think, is a time
that we are all about equal. That does not seem to be the case, however,
according to several studies in today’s issue of the Archives of
Internal Medicine, one of the JAMA/Archives journals.
One report
says patients with advanced cancer who discuss end-of-life care with
their physicians appear to have lower health care costs in the final
week of life than those who do not. Other studies find minorities have
higher health costs at the end of life, some patients feel abandoned by
their doctors, and one article explores why patients request physician
aid in dying in Oregon.
A disproportionate share of medical costs occur at
the end of life. Almost one-third of Medicare expenditures are
attributable to the 5 percent of beneficiaries who die each year. About
one-third of expenses in the last year of life are spent in the final
month. Previous studies suggest that most of these costs result from
life-sustaining care, including resuscitation and mechanical
ventilation.
A study 603 patients who were part of the Coping
With Cancer study, which was funded by the National Institute of
Mental Health and the National Cancer Institute, was conducted by Baohui
Zhang, M.S., of the Dana-Farber Cancer Institute, Boston, and
colleagues.
At the beginning of the study - between 2002 and
2007 - 188 (31.2 percent) reported discussing their wishes about
end-of-life care with their physicians. They were then followed up
through death.
In the final week of life, patients who reported
having end-of-life discussions with their physicians had average
aggregate health care costs of $1,876, compared with $2,917 for patients
who did not.
Formal and informal caregivers who were interviewed
after patients' deaths reported that those with higher costs also had a
worse quality of death in their final week.
Costs Vary
Significantly by Racial and Ethnic Background
In the second article about end-of-life costs,
Amresh Hanchate, Ph.D., of Boston University School of Medicine, and
colleagues report on an analysis of data from 158,780 Medicare
beneficiaries who died in 2001. In the last six months of life, costs
varied significantly by racial and ethnic background - costs for whites
averaged $20,166, compared with $26,704 for blacks and $31,702 for
Hispanics.
"Although 40 percent to 60 percent of these excess
differences are associated with geography, i.e., living in
high–medical-expenditure areas, substantial differences remain, even
after adjustment for many patient characteristics in addition to
geographic variables," the authors write. "Strikingly higher rates of
use of intensive end-of-life treatments such as ICU [intensive care
unit] and ventilators account for most of these residual differences."
"Therefore, at life's end, minorities often receive
more expensive but not necessarily life-enhancing care," they conclude.
"It is unclear how much of this was actively sought, or the extent to
which racial and ethnic differences are principally driven by how
choices are presented or how they are ‘heard.' These would be fruitful
questions for future research."
Patients and
Families Report Feeling Abandoned by Physicians at the End of Life
Patients who are dying and their families report
that feelings of abandonment by their physicians at the end of life have
two components: a loss of continuity of care before death and a lack of
closure near death or afterward.
In another article in the March 9 issue, Anthony L.
Back, M.D., of Fred Hutchinson Cancer Research Center and University of
Washington, Seattle, and colleagues identified 55 patients with
incurable cancer or advanced lung disease who were expected to live a
year or less.
These patients, along with 31 physicians, 36 family
caregivers and 25 nurses involved in their care, were interviewed at
enrollment and again at four to six months and at 12 months.
"Early on, patients and family caregivers fear that
their physician, whose expertise and caring they have come to depend on,
will become unavailable," the authors write. "Physicians are aware of
this fear and attempt to address it with reassurance or continuity
strategies. Yet, as death approaches, some patients and families may
feel abandoned nonetheless because they lose the continuity of their
physician's expertise or their relationship with that physician."
"Near death or afterward, they may also experience
a lack of closure of that relationship. Most of these physicians are not
consciously aware of having abandoned their patients. Instead, they
report lack of closure or a feeling of unfinished business." The
findings could help physicians structure care to maintain the
professional value of non-abandonment, including use of non-hospice
palliative care or closure-promoting communication strategies involving
nurses and other members of the health care team
Oregonians
Interested in Physician Aid in Dying Appear Motivated by Fear of Future
Events
Individuals exploring physician aid in dying in
Oregon appear to be motivated by worries about future pain and loss of
autonomy rather than current symptoms, according to another report in
the same issue.
Linda Ganzini, M.D., M.P.H., and colleagues at
Portland Veterans’ Affairs Medical Center and Oregon Health and Science
University, Portland, surveyed 56 individuals who either requested
physician aid in dying or contacted a related advocacy organization.
Participants were asked to rate the importance of 29 reasons for seeking
this option on a scale of one (least important) to five (most
important).
The most important reasons—with median (midpoint)
scores of five—were wanting to die at home and control the surrounding
circumstances of death; loss of independence; and concerns about future
pain, poor quality of life and inability to care for one's self. All
current physical symptoms were rated as unimportant (one).
"Our data suggest that when patients first request
physician aid in dying, they do so not because of physical symptoms or
quality of life at the time of the request but in anticipation of future
suffering that they perceive as intolerable. Their desire to die is not
strong, and they do not believe that their life is poor in quality,
meaningless or worthless. Rather, they appear to be protecting against
the risk of future experience they do not believe they can endure," the
authors write.
"When confronted with a request for physician aid
in dying, health care providers should first work to bolster the
patient's sense of control and to educate and reassure the patient
regarding management of future symptoms."
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March 9, 2009 – Dying, we might think, is a time
that we are all about equal. That does not seem to be the case, however,
according to several studies in today’s issue of the Archives of
Internal Medicine, one of the JAMA/Archives journals. 
