Hospice eNews 
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What the Media Said about End-of-Life Care This Week
Week of
June 12, 2005
…a
service of
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AUTHOR ADDRESSES CONFLICT
MANAGEMENT AT END-OF-LIFE
M. Gregg Bloche, MD, JD, is the author of “Managing Conflict at the end of Life,” an article in the current edition of NEJM. The role of the law and lawmakers in making end-of-life decisions was in the forefront during the dying of Terri Schiavo. During this time, says Bloche, the “peripheral role of the law when end-of-life dilemmas arise” was almost forgotten. The law does set some limits--against active killing, mandating the following of advance directives and, in most jurisdictions, addressing physician-assisted suicide. “But within these bounds, end-of-life questions are almost always resolved in the private sphere, by patients, their physicians, and their family members, working with nurses, social workers, and members of the clergy.”
Bloche calls it “remarkable” that end-of-life conflicts rarely come to court, given the intensity of “anger, denial and other nonrational influences [that] can lock family members into warring stances over whether to treat a devastating illness aggressively or discontinue life-sustaining measures.” We don’t know how often such conflicts arise, and that “is a measure of how discreetly such squabbles are handled,” Bloche says. Our commitment to following the clearly-stated wishes of patients “safeguards patients’ life and dignity” and also protects against family arguments. But when a patient’s wishes are not known, Bloche says,“It is important to limit the possibilities for family conflict and lasting anger. Enabling families to mourn and move on – and discouraging them from playing out old resentments as end-of-life battles – should be a clinical and social priority.”
Bloche says that it would help if “the law made it difficult for any one party to impose a decision when family members or others concerned disagree with it.” Use of the courts tends to produce clear-cut winners and losers. If it becomes more difficult to involve the courts, says Bloche, “Law can encourage conversation aimed at reconciliation or, at least, mutual accommodation.”
Bloche calls the current law, that asks what a patient would want if a preference has not been stated or a proxy named, “a legal fiction,” but says it sends the right moral message. It “centers problem-solving conversation on something family members and friends have in common – their commitment to the patient’s interests. This focus, in turn, encourages more mature handling of old wounds and resentments, even if they cannot be resolved.”
“Efforts to enmesh the law in end-of-life choices through detailed advance directives and the formal selection of surrogate decision makers risks stoking conflict,” Bloche thinks. “The more detailed the directive, the greater the possibilities for lawyerly argument about its applications to situations that its author did not precisely foresee.” Choosing a surrogate may solve that problem but may hurt or offend other persons, introducing another problem. Still, Bloche writes, “When ties among loved ones are strong and cooperation prevails, the case for involving the law is weaker.” Bloche compliments the judges who refused to allow the introduction of religious beliefs into the Schiavo case, saying that this would “reduce the latitude allowed by law.”
The article says that there are several lessons to be learned from the Schiavo case about managing family conflicts at the end of life.
* The Schiavo case “represented an extraordinary exception.”
* All those involved in end-of-life disputes – courts, clinical caregivers, and others with a legitimate concern in the case – should have “an overarching goal … to pursue private, family-friendly accommodation within the wide limits set by law.”
* Caregivers should encourage patients, family members and others closely involved to discuss end-of-life questions among themselves.
* Caregivers should be on the lookout for signs of disagreement and discord and should “become active listeners in search of smoldering feelings that might give rise to conflict.”
* If conflict comes, choices about end-of-life should not be “divorced from the regrets and resentments involved” and treated as purely ethical questions. The skills of mediators “are well suited to the work of guiding warring family members toward agreement on end-of-life choices for their loved one.”
* Financial factors, whether real or perceived, can involve caregivers and insurers, as well as family members, and “can shape positions and sow distrust.” As a nation, we are unwilling to face the conflicts caused by efforts to limit spending on medical care and insistence on “all possibly beneficial care.”
Bloche closes by saying that the Reverend Robert Lynch, the local Catholic Bishop, tried unsuccessfully to bring Schiavo’s husband and parents to the table for mediation. Lynch refused to side with the parents even when the Church did, calling “‘on both sides [to] step back’ and to try for ‘a heroic moment of concern for the feelings of each other.’” Lynch made a public appeal, ignored by all, saying, “The legacy of Terri’s situation should not be that of those who love her the most, loathing the actions of one another.” (NEJM, 2005;352:2372-2373)
ARTICLE EXPRESSES CONCERNS
ABOUT NEW HOSPICE COPs
An Eli’s Home Care Week article, entitled “Hospice COPs Propose Major Differences In Assessments, QI,” has a subtitle asserting that the “Host of changes will require hospices to make significant operational shifts.” Industry veterans say that CMS has “vastly underrated the regulatory burden the new COPs will place on hospices.” CMS says that “little to no burden will be added,” but New York City’s Arent Fox attorney Connie Raffa says that the changes to assessment requirements and a new quality improvement program will take “staffing and money.” Raffa adds, “The regs assume hospice can meet these requirements at current reimbursement rates. They can’t.”
The new assessment COP will require hospices to “conduct a comprehensive assessment (including a drug review) within 24 hours of a physician’s order for hospice care, complete the assessment within four days of hospice election, update the assessment at least every 14 days and update it at recertification. Additionally, hospices will have to review and update the plan of care at least every 14 days.” Hospices will no longer be able to conduct assessments before receiving a physician’s order for hospice, because the new COPs will prohibit using such assessments. Arent Fox attorney Deborah Randall says that disallowing early assessments and adding requirements for initial assessments “may be raising barriers to hospice access.” “Congress has tried to loosen up the burden on the front end” for electing hospice, according to Randall, and the new requirement “is not good for patients or patients’ families.”
The new quality assessment performance and
improvement (QAPI) requirement, replacing the current quality assurance COP,
will be a data-driven model under which hospices will “choose,
measure, analyze and track quality indicators of their own choosing.” They will also be required to conduct
“performance-improving projects” on the measures. Attorney Mary Michal,
with Reinhart Boerner Van Deuren
in
Some wonder if the new COPs
will ever take effect, since “the last set of proposed COPs
just disappeared.” Consultant Heather
Wilson warns that hospices should not adhere to the new proposal yet, since the
old ones are in effect until CMS finalizes the new conditions.
An editor’s note promises more information about the proposed COPs in an upcoming issue of Eli’s Home Care Week. (Eli’s Home Care Week, 6/6)
PAIN NOTES
* A federal appeals court ruled that Endo Pharmaceuticals Holdings Inc.’s generic version of OxyContin does not violate Purdue Pharma’s patents and that Purdue Pharma had deliberately misled the FDA in its patent applications. Endo won the right to offer lower dose generic versions and six months of exclusive marketing for those versions. Endo now plans to sue Purdue Pharma to prevent it from selling an “authorized generic” version of its own during that period. (AP Financial Wire, 6/7; The New York Times, 6/8)
* As part of a series
on overcoming serious health challenges, the Cincinnati Enquirer wrote about three women and
their strategies for managing chronic pain.
One finds that acupuncture “helped tremendously,” another uses aquatic
fitness and a third uses Imitrex for her
migraines. (
* Representative of
the wide coverage of the issue, USA Today
says that the US Supreme Court’s recent
decision on medical marijuana “was a stretched interpretation of the clause in
the Constitution that gives Congress the power to regulate interstate
commerce.” Saying that “under
Monday’s ruling, growing marijuana at home for medicinal purposes, with no
money changing hands, is somehow now a form of interstate commerce,” and “it
makes you wonder what the majority was smoking.” (
*
* A new survey at a
END-OF-LIFE NOTES
* A
* Michael Potts, of
* Inez de Beaufort,
PhD, uses the case of Ineke Stinissen,
a Dutch woman in a persistent vegetative state for 16 years before her life
support was discontinued, to review the history of discontinuing life support
in the
* A project which helped “high-functioning community-dwelling older people communicate their wishes for care at the end of life with someone they would trust to make health care decisions for them if necessary” found that “it is possible to affect advance communication about wishes at the end of life.” The authors hope that others will “work toward the goal of increased communication between elderly people and their agents. (Health and Social Work, 2005;30(2):107)
* Group sessions for talking together “may fill [a] much-needed gap in care” for the terminally ill, according to an article at DrKoop.com. The full article is online at www.drkoop.com/newsdetail/93/526007.html. (DrKoop.com, 6/2)
*
* The
OTHER NOTES
* Emily Friedman, an independent health policy and ethics analyst, says one of the most disheartening things about the Schiavo case is “the hypocrisy demonstrated by just about everyone involved, as well as any number of people who had no right to be involved, but chose to involve themselves.” The only people exempted from Ms. Friedman’s charge are Florida Governor Jeb Bush (R), who “never wavered in his position,” and the judiciary. (Hospitals and Health Networks, 6/7)
* The demand for
“traveling nurses” is growing again.
Approximately 20,000 US nurses work at hospitals for an average of 13
weeks, then moved on to another site.
Staffing companies report high demand and thousands of jobs are
available. (
* A review of The American Book of Dying says, “The contrast between the history and wisdom of our ancestors as they approached death and the unknown, and the legal strategies and militant ‘Right to Lifers’ in the mix around Terri Schiavo, could not have been greater.” The reviewer says that the book, which is about the hospice movement, “includes very interesting and instructive history of the Ancient Books of the Dead, and their emphasis on spiritual healing at the end of one’s life.” (Townsend Letter for Doctors and Patients, 6/1)
* Barbara Howe, ALS
patient at the center of a dispute between
* Spiro Nikolouzos, who was transferred to a