Hospice eNews

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

Week of July 18, 2005

…a service of Florida Hospices and Palliative Care

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JAMA REPORTS ON STUDY ABOUT “IMPROVING THE USE OF HOSPICE SERVICES IN NURSING HOMES”

A new study published in the current issue of JAMA has found that increased use of hospice and improved quality of end-of-life care can be achieved by simple communication efforts. Dr. David Casarett of the Philadelphia Veterans Affairs Medical Center says, “This study shows that sometimes the best ways to improve end-of-life care are the simplest. By ‘jumpstarting’ conversations about hospice, we found that it was possible to give more people access to hospice, earlier in the course of their illness.” The study also found that interventions of communication may decrease the use of acute care facilities.

Two hundred five residents of three nursing homes – one urban facility with mostly African American residents, one suburban home with mostly affluent white patients and one VA nursing home with an “ethnically diverse population” – participated in the study. Surrogates answered for residents who were unable to participate themselves. Eligible participants were not already enrolled in hospice, had chosen comfort as their main treatment goal, had refused CPR and ventilators and had at least one identified need for palliative care. Participants were randomly assigned to either a control group or a group that would receive an intervention in the form of an informational hospice visit approved by their physicians.

As a result of the study, the researchers offered five implications for efforts at improving the quality of nursing home end-of-life care.

* The intervention resulted in referral to hospice of approximately 20% of residents in the intervention group within 30 days, compared to 1% of the control group.

* The earlier the referral to hospice care, the greater the benefit to the patient. The authors say that the “principal effect of this intervention may be earlier referral rather than greater rates of hospice use.”

* Residents who had an intervention “were admitted to the hospital less frequently and spent fewer days in an acute care setting.”

* Increased hospice access improves the ratings that families give of the patients’ end-of-life care.

* The intervention could be implemented in most long-term care settings.

The authors note three main limitations to the study. The three nursing homes involved either had their own hospice programs or relationships with community hospices. The researchers expect that the intervention would be less effective in nursing homes without such resources. Second, the data on diagnoses were extracted from medical records and may “be inexact.” And, finally, the study did not evaluate how the intervention changed patient care during the follow-up period. (JAMA, 2005:294:211-217; PR Newswire US, 7/14; NHPCO News Release, 7/14)

DAME CICELY SAUNDERS DIES

Dame Cicely Saunders, called “the mother of the modern hospice movement,” died on July 14 at the age of 87. Saunders, whose work grew out of her “Christian belief that no human life, no matter how wretched, should be denied dignity and love,” became interested in the hospice movement in 1948, when she was a young medical social worker in London. Hospices at the time were mostly run by nuns but “were backward in their understanding of medical techniques.” (The Daily Telegraph, 7/15)

One of Saunders’ patients in 1948 was a young Polish waiter, David Tasma, and they discussed the possibility of a better place for him to die than the busy hospital ward where they met and where his pain was uncontrolled. Saunders and Tasma fell in love, and when he died, Tasma left her his entire estate of 500 pounds. “I’ll be a window in your home,” said Tasma. Saunders said, “It was as though God was tapping me on the shoulder and telling me, ‘You’ve got to get on with it.’” Later, in 1980, Saunders married Marian Bohusz-Szyszko and cared for him until his death in 1995.

Saunders became a physician and did research on pain control for seven years before founding St. Christopher’s Hospice at Sydenham in South London. There were no new drugs for pain, but Saunders used the ones she had in anticipation of pain, rather than in response to it. As a result, most terminally ill patients were more comfortable, even until the end of their lives. Saunders believed that death was not something to be afraid of but was a spiritual event that could offer meaning to life and the possibility of reconciliation. One thing Saunders noticed about dying patients was that “those who coped best always had a shining faith, but that atheists often died as peacefully as Christians.” Those who had not “sorted out their ideas” had the most problems, and the affluent and clergy often had the most difficulty.

The article says that Saunders faced apathy and “outright hostility” from the medical establishment in her attempts to found a hospice. “Though she was widely revered as a sort of secular saint, it was only through being tough and authoritative, and often downright difficult, that she succeeded in forcing the medical profession to acknowledge what medicine can do for the dying.” By 1980, her work and the principles she set forth in her books had become standard practice for Britain’s health service, and by 1993 there were 173 British hospices that operated under her philosophy.

NHPCO Vice President Stephen Connor said, “The world is a better place because of Cicely Saunders. Few people can go to their rest having done more to relieve suffering and to advance compassion in the world than Dame Saunders. She was our matriarch and our guiding light, never wavering in her quest to advance care for the dying.” The CEO of St. Christopher’s Hospice, Barbara Monroe, said, “Dame Cicely’s vision and work has transformed the care of the dying and the practice of medicine in the UK and throughout the world. She is an inspiration to us all.” (The Daily Telegraph, 7/15; NHPCO News Release, 7/14)

PAIN NOTES

* The FDA is investigating whether any of 120 deaths of patients wearing fentanyl patches were related to inappropriate use of the patches or to their quality. A letter from the FDA to physicians advised them to prescribe the lowest possible dose and warned that the directions “must be followed exactly to prevent death or other severe side effects from overdosing.” (The Houston Chronicle, 7/16)

* The 2000 World Health Organization guidelines, “Achieving Balance in National Opioids Control Policy,” is available on the public website of the Pain & Policy Studies Group. See http://www.medsch.wisc.edu/painpolicy/publicat/00whoabi/00whoabi.htm. (PPSG News Distribution, 7/13)

PUBLIC POLICY NOTES

* CMS has proposed a 2.5% increase in Medicare payments to home health agencies, effective in the 2006 calendar year. CMS also wants to revise market area definitions that it uses to adjust for geographic economic differences. If the revisions are adopted, CMS expects that rural home health agencies will receive a 3.5% increase and urban ones 2.3%. Comments on the proposals are due to CMS by 5:00 PM on September 6. The PDF file is available at www.cms.hhs.gov/providers/hha/cms1301p.pdf. (AHA News Now, 7/11)

* Taking what it calls “a first step” in responding to “the global epidemic of cancer,” the World Health Organization is developing a global cancer control strategy. The WHO projects that infectious and chronic non-communicable diseases will kill 58 million persons this year, nearly seven million of them from cancer. WHO also predicts that cancer deaths will increase by 50% in the next 15 years and that 75% of those deaths will be in developing countries. (US Fed News, 6/7)

* Former Colorado Governor Richard D. Lamm and medical-policy scholar Robert H. Blank say, “One of the great challenges in America’s future is to retire the baby boomers without bankrupting the country or unduly burdening future generations.” The coming crisis could “overwhelm American public policy,” they say, and admitting “that the current system of funding health care is unsustainable [and] requires us to give up a cherished dream: the dream of total, universal care for any ailment freely available on demand.” (The Futurist, 7/1)

OTHER NOTES

* The new cancer drugs, which act in new ways such as blocking blood vessels to tumors, can cost $10,000 per month, and a course of treatment can total $100,000 for the drugs alone. Except for Gleevec, which has produced “spectacular results,” the new drugs offer only marginal help to most patients, extending life by weeks or months. Some experts are warning that more new drugs are coming and that the use of these “superexpensive therapies may further fuel the runaway costs of the health care system.” (The New York Times, 7/12)

* The Empty Room: Surviving the Loss of a Brother or Sister at Any Age, by Elizabeth DeVita Raeburn, is reviewed in the current issue of JAMA. Reviewer Melinda Morton found the book “a cathartic and uplifting confirmation of her own personal experience,” and highly recommends it to anyone who has lost a sibling. Siblings are often told that the “loss is not theirs to mourn” and are encouraged to be strong for their parents. The result is “frozen” grief, which may find other ways to manifest itself, possibly in risky, unhealthy behavior. (JAMA, 2005;294:253)

* Dr. Joseph Fins, answering “10 Questions…” in the Journal of Financial Planning, called the Schiavo case “fundamentally … a right to die case.” Fins said that he respects the right of Schiavo’s parents to go to court but that “ultimately the law is supposed to protect the rights of the patient and the primacy of self-determination.” Fins maintains that “20 years of progress on controlling one’s medical destiny is still fragile,” and hopes that the parties involved in such disputes “understand their moral obligations to each other.” (Journal of Financial Planning, 2005;18(7):12)

* In response to earlier articles on advance directives issues for patients with mental illness (See HNN, 5/10), a letter to the editor of Psychiatric Services says that two major psychiatric conditions occur in late adolescence or early adulthood. Because each psychotic episode associated with schizophrenia or bipolar disorder can cause subtle brain damage, it is important to discuss end-of-life preferences with these patients soon after diagnosis. Additionally, the writer says, “Even if use of both psychiatric and medical advance directives becomes routine clinical practice, the role of surrogate decision makers for persons with mental illness should not be undermined.” (Psychiatric Services, 2005;56:874-875)

* Oregonian Francesca Hartman has chosen to die on her own terms, but not by using Oregon’s Death With Dignity law. In spite of a morphine patch and additional oral morphine for breakthrough pain, Hartman is in constant pain from “overlapping heart ailments.” Because of damage from a stroke, she has difficulty swallowing, and may not fit Oregon’s definition of terminally ill. With her family’s acquiescence, if not their wholehearted enthusiasm, Hartman has decided to stop eating and drinking. Her hospice nurse says that this is Hartman’s choice, and that “hospice care is all about choices.” For the story, search for “Francesca Hartman,” without the quotes, at www.oregonlive.com. (The Oregonian, 7/17)