Hospice eNews

What the Media Said about End-of-Life Care This Week

Week of January 3, 2006

…a service of Florida Hospices and Palliative Care

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HOSPICE NEWS NETWORK WELCOMES GLATFELTER INSURANCE

The Hospice News Network expresses thanks to the Glatfelter Insurance Group for their national sponsorship of HNN 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. Readers may learn more about the services and products of the Glatfelter Insurance Group by visiting its website at www.hccis.com.

The sponsorship grant allows HNN subscribers to continue their subscriptions without an increase in subscription costs. A special notice of recognition and thanks will be included in HNN beginning with this week’s issue. (HNN Editor’s Note)

PHYSICIANS’ PRESENTATION OF OPTIONS AFFECTS HOPE

In “Doctors’ Delicate Balance in Keeping Hope Alive,” one of The New York Times’ “Being a Patient” series, author Jan Hoffman says, “The language of hope – whether, when and how to invoke it – has become an excruciatingly difficult issue in the modern relationship between doctor and patient.” For thousands of years, doctors hewed to the Hippocratic line – hold out hope, even if the truth isn’t told. But “modern patients’ demands for honesty and more involvement in their care” has “blasted apart” that philosophy.

In the current day, the article says, “Patients may be told more than they need or want to know. Yet they still also need and want hope.” Doctors are thinking about hope in new ways – softening a bleak prognosis or foregoing treatments that offer “questionable benefits.” The definition of hope depends on the patient’s condition and life circumstances.

Hoffman says, “The power of a doctor’s pronouncements is profound. When a doctor takes a blunt-is-best approach, enumerating side-effects and dim statistics, in essence offering a hopeless prognosis, patients experience despair.” On the other hand, suggesting that a weary patient try one more therapy means that the patient pays a considerable financial, physical and emotional cost. Harvard professor Dr. Nicholas A. Christakis says, “We have to find a less toxic way to manage their hope.”

In many countries across the world, including some modernized European ones, doctors still withhold bad prognoses. But in places where the modern patients’ rights movement holds sway, Hoffman say, “Many doctors interpret informed consent as the obligation to rattle off all possibilities, from best-case to worst-case situations. Honesty is imperative.”

One reason for the medical “crepe hanging” is that some doctors “paint a bleaker picture than necessary so they can turn out to be heroes if things turn out well,” Stanford psychiatrist Dr. David Spiegel says. Another is the fear of being sued for malpractice. The medical community also calls this bluntness “truth dumping” and “terminal candor.” To social workers, it’s “false hopelessness.” Roz Kleban, social worker at Memorial Sloan-Kettering Cancer Center, says, “Telling someone they have two years to live isn’t useful knowledge. It’s noise. Whether or not that prediction is true, they lose their ability to live well in the present.”

Columbia University internist and bioethicist Dr. Barron Lerner says, “There’s an ethical obligation to tell people their prognosis, but no reason to pound it into their heads.” Others believe that physicians should be sure to explain the situation in context and share the advantages and disadvantages of different possible treatments, including that of no treatment at all. Many studies, however, show that patients “do not understand statistical nuances and tend to misconstrue them. Moreover, though statistics may be indicative, they are inherently imperfect.” Many doctors would rather not give prognoses and studies indicate that prognoses are often wrong.

Contrasted with false hopelessness is false hope. False hopelessness, Hoffman says, “in the name of reality, dwells on the dark view of a patient’s condition, prematurely foreclosing possibility and a spirited fight. False hope sidesteps reality, leaving patients and family members unprepared for tragedy.” Patients may also be confused when a number of medical subspecialists are attending a patient. A cardiologist may tell the family of a severe stroke patient that “this is a strong heart.” Though the patient will probably never be conscious again, the family thinks that is good news.

Dr. Lerner says that getting “into the language of hope” means risking “over-promising” things. It’s more useful, he says, to discuss with patients what hopeful things can be done. Dr. Lidia Schapira, a Boston oncologist, says, “In the way we dose our drugs, we need to dose our information. Finding that dose needs to be explored with each patient. It’s about what the patient needs to know, not what the physician is comfortable saying.” (The New York Times, 12/24)

FRAGILE HEALTH AND LONG LIFE

In “Living Long in Fragile Health: The New Demographics Shape End-of-Life Care,” Dr. Joanne Lynn says “The great success of modern medicine has been to transform acute causes of death into chronic illnesses.” Not much time or money is spent on cures, which are cheap and quick if available, she says in the article in the recent Hastings Report. “Instead, health care now involves substituting better chronic conditions and helping people to live with implacable illnesses, a few of which are stable and many of which are progressive but not life-threatening. However, each of us eventually lives with a set of conditions that are, taken together, progressively worsening and eventually fatal.”

Neither our language nor our shared social life accommodates the new reality of lingering death. No sitcoms joke about an elder’s incontinence, nor do movies show the paraphernalia needed to live with advanced medical conditions. There is also a gap in the “conceptual apparatus” for reforming end-of-life care. “Most of the time spent living with serious illnesses that will end in death is spent not in hospice care, but in the indistinct zone of ‘chronic illness’ that has no specific care delivery system,” Lynn writes.

Lynn cites several factors that have and will influence reforms in end-of-life care: the 1990’s SUPPORT study; America’s gradually growing expectation of disability in old age and the inevitability of serious illness and death; the high concentration of costs and burdens of care that are concentrated in the last years of life; and, the conflicting organization of knowledge about the body around organs and diseases while the costs and quality of care have been organized around programs and settings.

Lynn discusses “mass customization,” the philosophy of successfully matching goods to the needs of the market. “Mass customization … aims to define manageable populations with similar needs and then engineer services that match the size of that population and its predictable needs.” Mass customization could be used to build care arrangements around the three common trajectories of decline: 1) a long period of good function with a quick decline and death, where patients need excellent medical care for many months or years, with hospice support for patient and family at the end; 2) a slow decline with occasional exacerbations, which requires disease management and rapid intervention in the case of exacerbations; and 3) long-term loss of function requiring years of care, including assisted living. These trajectories roughly follow the sequence of aging – fatal cancers peak around age 65, fatal failures of chronic organ systems at about age 75 and frailty and dementia years after that.

Lynn asserts that viewing end-of-life care as a problem of system design is “really quite different from imagining that the core problem is decision-making by patient and physician. It doesn’t assume that “good care could arise from prudent choices by individual doctors and patients. Rather, it starts from the claim that the care system should be designed to serve the vast majority of patients on ‘autopilot.’”

Lynn identifies the following elements as the “shape of a worthy reform agenda.”

* Define thresholds of severity of illness that can also be used administratively to indicate serious illness expected to last until death.

* Focus on comprehensive care arrangements that follow the patient across time and settings.

* Require high standards of “symptom prevention and relief, family support, and planning ahead.”

* Pay “sustainable salaries and decent benefits” for the employees of such systems, and discount expensive services that have much smaller expected benefits.

* Develop family caregiver support, including health and disability insurance and respite care.

* Make sure all critical components of good care are in adequate supply.

* Evaluate the effectiveness and efficiency of innovative approaches to care and replicate “proven models,” with the aim of developing “a highly reliable sustainable care system within a decade.”

What stands in the way of such a system? Strong lobbying interests and powerful groups invested in specific parts of the current system are the biggest obstacles. “No strong industry interests are aligned with good care for the end of life,” Lynn says, noting that even professional trade associations “have to look first to the best interests of their particular part of the puzzle.”

Lynn sees family caregivers, the common core need through the three trajectories of dying, as “the only group that comes to the fore as a potential powerful force for thoughtful reform.” “They – really, we,” she says, “could take on an identity as a political force and demand that leadership focus upon these issues. That is a daunting claim – to take a diverse group that now has no particular self-identification, convince them that they have shared interests, and see them forge a political agenda and carry it through. Hope lies in the fact that the alternative is so distasteful – wasteful, unreliable services that also bankrupt the country and demoralize family members – and that all of us face this fate together, across the entire range of wealth and family structures.” (Improving End of Life Care: Why Has It Been So Difficult?)

Editor’s note: This is the third 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

* Ending Life: Ethics and the Way We Die, by Margaret Pabst Battin, is reviewed in the current NEJM by Dr. Diane E. Meier. Meier says, “This book, which is engaging, erudite, and often funny, is a fascinating review of the history and implications of the debates – both medical and military – about suicide. Religious leaders, policymakers, health professionals, the sick, and the worried well will find these essays helpful in the effort to extract meaning and morals from modern life and its variety of deaths.” (NEJM, 2005;353:2726)

* George J. Annas’s American Bioethics: Crossing Human Rights and Health Law Boundaries is reviewed in the current NEJM. Reviewer Arthur L. Caplan says that bioethics began in the 1960’s “as a cacophony of a variety of voices in different disciplines, united primarily by common interests in the ethical problems posed by emerging technologies such as kidney dialysis, genetic testing and in vitro fertilization.” Now a full-fledged discipline, bioethics “has grown sufficiently powerful that those on the left or right of the political spectrum are keen to embrace it.” Caplan writes that American Bioethics is a reflective response to the move of bioethics from “marginal intellectual hybrid to the mainstream.” (NEJM, 2005;353:2724-2725)

PUBLIC POLICY NOTES

* In spite of the fact that California state law allows the release of terminally ill prisoners who are no danger to society, and that such release spares the state’s prison system the expense of caring for them, only about one-fourth of those applying for “compassionate release” actually get it. One reason is, the article says, “The process is so cumbersome that often an application isn’t acted on until after the inmate has died.” In other cases, prisons don’t inform inmates and families of the policy or give them advice on how to apply. (The San Francisco Chronicle, 12/27)

* At the request of representatives of the Wisconsin Pain Initiative and the American Alliance of Cancer Pain Initiatives (AACPI), the Wisconsin Pharmacy Examining Board has expanded its position statement on Wisconsin pharmacists and Schedule II Medications, originally published in the Board’s Wisconsin Regulatory Digest of October, 2001. The expanded statement, available from a link at www.aacpi.wisc.edu/wcpi/wcpihome.htm, tells pharmacists that the Board “encourages pain management; recognizes that pain management, and the use of opioids for pain management, are a part of medical/pharmacy practice; and, recognizes confusion exists around the terms addiction, physical dependence and tolerance.” (AACPI Website)

* A bill recently introduced into the Georgia legislature “would create a legal presumption that people who are incapable of making their own decisions should be kept alive with food or water.” State law currently says nothing about the issue. Republican Senator Chip Rogers, author of the current bill, has submitted similar bills before, but none have been passed. (The Atlanta Journal-Constitution, 12/23)

OTHER NOTES

* The December issue of Chicago Hospital News says, “Hospice is a natural progression” for many cancer patients. Dr. Joel S. Policzer writes, “Patients appreciate that in palliative care and hospice the focus shifts from ‘cancer’ to ‘patient.’” Policzer says that patients have told him “that it is almost liberating not to have to concentrate on the tumor any longer.” Policzer encourages changing the Medicare Hospice Benefit policies so that “the option of a final course of treatment does not delay the benefit of skilled end-of-life care.” (Chicago Hospital News, 12/2005)

* Linda Edmondson, writing in The Daily Oklahoman, says, “To write one’s own obituary is a challenging and thought-provoking assignment.” It may become “an exercise of reflection and review” for the terminally ill. Self-written obituaries may also be sources of information long-forgotten, or never known, by other members of the family. “Writing one’s own obituary well ahead of time is a thought-provoking and satisfying task,” the article says. “Try it.” (The Daily Oklahoman, 12/19)

* Former Florida Senator Jack Gordon, chairman of the board and CEO of the Hospice Foundation of America, died in December of injuries after being struck by a car. The Miami Herald called him “a champion for civil rights, higher education, and for 20 years, the unabashedly liberal conscience of Florida’s state Senate.” (The Miami Herald, 12/21)

* One of the AMA’s top five resolutions to help people start a healthy new year is to encourage them to establish advance directives. The AMA says that it hopes the lessons from the Schiavo case “encourage everyone to write a living will, appoint a durable power of attorney for health care, and discuss their wishes with family or a designated care-taker. Physicians can help with these important decisions as patients grapple with this difficult topic.” (US Newswire, 12/28)

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.