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What the Media Said about End-of-Life Care This Week
Week of December
19, 2005
…a
service of
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AUTHOR EXAMINES AUTONOMY AS
END OF LIFE PRINCIPLE
In “The End of Autonomy,” an article in the
recent
The principle of autonomous choice at the end of life was established in the 1976 Karen Ann Quinlan case. Had she been competent, she would have had the right to determine her care. Since she was not, the decision devolved to her father “so long as he acted on the basis of what he believed to be her wishes rather than on his own view of her best interests.” Burt says that this “autonomy framework” for end-of-life decision-making has had “a distinctly artificial cast of mind” since that time and that, “We can now clearly see what should have been evident from the beginning: the autonomy framework in the context of end of life decision-making simply doesn’t fit the facts.”
While emphasizing that protecting patient autonomy in all areas of medical care is important, Burt asserts that efforts to get people to make their own end-of-life decisions have “essentially failed.” The SUPPORT study found that “most patients and their families did not want to make decisions about their end of life care” and this has been confirmed by other studies, Burt says. “They simply did not want to talk about the reality that they were facing death; and most medical professionals returned the favor with equal reluctance to talk about dying.”
Burt sees the pursuit of individual choice-making at the end of life as “having limited potential for practical effect in individual lives and deaths” and also says that this “carries substantial social dangers: it is likely to yield abuses as bad as, and even directly similar to, the abuses of physician authoritarianism” it was intended to correct. Cognitive difficulties “inescapably afflict everyone in contemplating the reality of death,” Burt writes. He adds, “The very concept of the choice-making self, the construct on which the autonomy principle depends for its coherence, is radically unsettled, even made incomprehensible – by the actual, imminent approach of death.”
Burt sees two ways to respond to this
failure of autonomy – work harder at promoting patient and family
decision-making or leave the autonomous choice framework behind and find a new
way to think about decisions at the end of life. He proposes three responses to the problem.
First, “no one should be socially authorized to engage in conduct that directly, purposefully and unambiguously inflicts death, whether on another person or on oneself.” Such an act leaves no room for “acknowledged ambivalence” about death, which Burt sees as a protective function. Actions such as withholding or withdrawing nutrition and hydration promote “conscious acknowledgement of ambivalence – that is, of the close proximity of these actions to wrongful conduct. … Our guiding principle of social regulation should be that the more comfortable clinicians and patients are with actions implicating death, the more socially dangerous these actions become.”
Second, “decisions that indirectly lead to death should be acted upon only after a consensus is reached among many people. No single individual should be socially authorized to exercise exclusive control over decisions that might lead to death…” Burt includes even the patient in this declaration, saying that even personal decisions to continue or stop treatments have “a powerful and lasting impact on family members and on health care clinicians,” and that their feelings are ignored when “we fixate on the patient’s autonomous choice.” The consultative process is fraught with problems -- “time-consuming and emotionally draining. Clinicians are not adequately compensated financially or psychologically.” Patient and proxy autonomy allows clinicians to “avoid these arduous, complicated confrontations with conflicting family members and with conflicts within themselves.” But, Burt writes, “This is the path of least resistance, and the path of greatest individual and social danger toward routinized, unacknowledged abuse.”
Third, Burt says, end-of-life care decisions should by “implicitly dictated by systems-wide decisions about available resources, personnel, and institutional settings,” and “should not depend on explicit decisions made at the bedside of a specific dying person.” Such systems-wide decisions “establish the context and frequently dictate the content of individual bedside decisions,” as exemplified by the SUPPORT finding that the place of death correlates “directly with the availability of institutional beds,” not on patient or family preference. Systems-wide decision-making has psychologically protective implications, Burt writes. “As much as possible, we should make systems-wide decisions in which, at the moment when the decisions are made, no specific dying person is the acknowledged target.”
Burt’s three proposals carry the common theme that individual autonomy loses focus, which has “no substantive content – because it is ostentatiously silent about whether death is desirable or undesirable…” It denies ambivalence about death – its attractiveness and repulsiveness – and denies “that decisions either to accept or to resist death are more fraught with possibilities of abuse when this core ambivalence is suppressed rather than acknowledged in an open and sustained way.” The “old ethos” of decision-making was the paternalism of the attending physician, the new is individual autonomy. Burt says, “We have seen enough by now to know that the current path is not a reliable improvement over the old.” (Improving End of Life Care: Why Has It Been So Difficult?)
Editor’s note: This is the second in a series of articles from the recent Hastings Report, “Improving End of Life Care: Why Has It Been So Difficult?” We will continue the series as space permits.
RESEARCH AND RESOURCE NOTES
* “The Association Between Anemia and Fatigue in Patients with Advanced Cancer Receiving Palliative Care” is a free online article at www.liebertonline.com/toc/jpm/8/6. According to the article, advertising to consumers doesn’t point out that erythropoietin is only effective against fatigue caused by anemia, which is “not a significant cause of fatigue in most cancer patients.” Charles F. von Gunten, editor-in-chief of the Journal of Palliative Medicine, says, “This data will help physicians resist the patient and family pressure to use erythropoietin because they saw it on television.” (Journal of Palliative Medicine, 2005;8(6):1144-1149)
* New research from
Johns
* The Winter 2005 issue
of PoPCRN is online at www.uchsc.edu/popcrn. Click on “Newsletters” in the left
frame. Articles of interest include
“Palliative Care Across the Continuum: Creating New Systems of Care for Patients
with Advanced Illness” and “Palliative Care:
The Nursing Home Connection and the State of
*
* The Wellness Community (TWC), an international non-profit foundation supporting cancer survivors and families, and the Lance Armstrong Foundation announced the formation “of a three-year cooperative agreement through which they will create a national program designed to support and empower people with cancer after treatment.” The agreement will expand TWC’s Return to Wellness program to men and women, regardless of cancer diagnosis and will add to it “a number of interactive education, support and strength-building activities that are designed to provide hope and empowerment during their transition from treatment to post-treatment.” (PR Newswire, 11/28)
* The Hospice Foundation of
OTHER NOTES
* Last
week’s White House Conference on Aging offered small groups of delegates the
opportunity to advance proposals that will provide Congress and the White House
a “blueprint for action” over the next 10 years. Some delegates criticized the format of the
once-a-decade conference, which broke from the tradition of all past
conferences and did not allow delegates to offer resolutions or make changes
from the floor. Past conferences have
“been the catalyst to such landmark programs as Medicare, Medicaid, and the
Older Americans Act. See www.whcoa.gov/ for full coverage. (
* In
“Being There: Caring for Sick has
Challenges, Rewards,” Sam Allis says that the one thing worse than recuperating
from major surgery is taking care of someone who’s recuperating from major
surgery. It’s not because you’re heartless
but because you’re helpless. “Taking
care of a world-class caregiver is trickier than it looks,” says Allis. They’re lousy patients who are
“constitutionally incapable of asking for help.
So you anticipate and don’t take no for an answer.” Allis discusses effective pain management as
a recent phenomenon, saying that “you can’t play catch-up with pain. You have to stay ahead of it.” (The
*
* The nursing shortage,
already acute, is going to get worse, a Newsweek
article says. More than 32,000 qualified
applicants were turned away last year and 82% of federal-loan applicants were
rejected, in part because Congress only funded $150 million for financial aid. Peter Buerhaus,
* The number of hospitals offering palliative care services rose 60% between 2000 and 2003. Twenty-five percent of hospitals now have such programs – 80% of VA hospitals, 30% of non-profit hospitals and 8% of for-profits hospitals. In 2004, hospice programs, teaching hospitals and those affiliated with the Roman Catholic church were more likely to offer palliative care. (Modern Healthcare, 12/12)
* “Palliative care is
separate and distinct from hospice even though the treatment approach to common
symptoms is similar,” says an article in the Western Pennsylvania Hospital News. The
* The
* The Environmental
Protection Agency, the FDA and the DEA are alternatives to the destruction of
medications that the elderly can no longer use.
A 2001 study estimated that drugs valued at more than $1 billion are
destroyed every year. Catherine Radle, the executive director of Hospice Atlanta, says that
this is “ridiculous, when we have so many people who could benefit from
medicine.” A few states have programs to
recycle single-dose packaged drugs with proper expiration dates and other states
give recovered medicines to clinics where patients without health insurance are
treated. (The
* Clarification of a note included in last week’s HNN: The final rule for hospices, which was published in the November 22 Federal Register, updates amendments to hospice COPs, which are not due out until May 2008. Under the final rule, hospices may, beginning January 23, 2006, discharge patients who switch to another hospice or move out of a hospice's service area, are no longer considered terminally ill or who behave (or whose families behave) in a disruptive, abusive or uncooperative manner to the point that the patient's care is affected. (Home Health Line, 12/1)