Hospice eNews

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

Week of August 8, 2005

…a service of Florida Hospices and Palliative Care

___________________________________________________________

ARTICLE EXAMINES OUR QUEST FOR “GOOD DEATH”

“Will We Ever Arrive at the Good Death?” That question is the title to an article in The New York Times. The article, by contributing writer Robin Marantz Henig, looks at the trend toward “open access” in hospice and palliative care. Henig says that the current experience of hospice is much different from its grass-roots origins. In 1960, says Henig, hospice was an “antiestablishment, largely volunteer movement advocating a gentle death as an alternative to the medicalized death many people had come to dread.” But hospice itself is now institutionalized, and “there are hospice patients on ventilators, hospice patients with feeding tubes, hospice patients getting pacemakers, hospice patients receiving blood transfusions and cardiopulmonary resuscitation, hospice patients who panic when they can’t breathe and call 911.”

“Open access,” as defined by Henig, means that Medicare hospice benefit patients can sometimes continue receiving chemotherapy and other treatments. With the growth of palliative care and the new inclusive nature of hospice, “the natural, machine-free deaths we say we want are starting to look a lot like the medicalized deaths they were meant to replace,” Henig writes. It’s a reflection of “society’s deep ambivalence about dying” and our “death-denying culture has led to a system of care for the terminally ill that allows us to indulge the fantasy that dying is somehow optional.” The medical system shifted terminology from “death and dying” to “end-of-life,” showing itself “as ambivalent about dying as we are ourselves.”

Palliative care is “making inroads” into medicine, particularly hospital-based medicine, but Henig says there’s a turf battle going on between hospice and palliative care. “Is hospice a subcategory of palliative care,” she asks, “or is it the other way around? Is it better to focus end-of-life care in the hospital or the home? Will palliative medicine put physicians back in charge of dying, remedicalizing the experience all over again? Will it turn suffering into just another disease to be cured?” Dr. Diane Meier, director of the Center to Advance Palliative Care, hopes that the American Board of Medical Specialties will recognize palliative care as a formal subspecialty within the next few years.

Dr. Joanne Lynn, former president of Americans for Better Care of the Dying and author of Sick to Death and Not Going to Take It Anymore, says that, for most of us, death comes “with unpredictable timing from predictably fatal chronic diseases.” But why, Henig asks, are we so often “blindsided by death, given that the diseases are “predictably fatal?” Because, she answers herself, “the hardest thing to do is to really, deeply believe that we or our loved ones will die” and that’s why patients keep going back for more rounds of treatment. James Hallenbeck, assistant professor at Stanford University and author of Palliative Care Perspectives, says that many patients and families have trouble breaking the cycle of continuing treatment, often acting “as if they are addicted to it.”

According to Henig, we’re addicted to our belief that death can be micromanaged. “We tend to think of a ‘good death’ as one that we can control, making decisions about how much intervention we want, how much pain relief, whether it’s in the home or the hospital, who will be by our sides,” and even sometimes what we’ll die from. But plans “go awry. Dying is awfully hard to choreograph.” Dr. Kathleen Foley, former chief of the pain and palliative care service at Memorial Sloan-Kettering Cancer Center, recognizes that not everyone wants to die at home. The “idealized fantasy home death” may be really a fantasy. Foley says, “We want hospice to be able to provide most of the care in those last days, but if the patient ends up dying in the hospital, that may be best for everyone.”

Henig says that our reluctance to talk about death, even as we are dying, is further evidence of our ambivalence about it. She writes of being surprised, on a visit to a hospice, of how unwilling both staff and patients were to talk of dying. “This hesitation about saying things out loud was a surprise to me,” she said. “The big push in the early hospice movement was to get people talking frankly about death and dying.” (The New York Times, 8/7)

METHADONE ESSENTIAL TO MANAGING CANCER PAIN

“Methadone: An Essential Analgesic to Manage Pain in Cancer” is an interview with Eduardo Bruera, Professor of Medicine at the University of Texas M. D. Anderson Cancer Center. The interview appears in Cancer Pain Release. In the interview, available online at www.whocancerpain.wisc.edu/contents.html, Bruera says that methadone can be used for relief of moderate to severe pain when patients cannot use other opioids. Among its advantages are its lack of active metabolites, which reduces the possibility of opioid toxicity, its “excellent oral and rectal absorption” and its long duration of action. Since it is synthetic and easily manufactured, its cost is one-tenth of that of other opioids.

Bruera cites three barriers to methadone’s use as a pain medication. First, says Bruera, there is a lack of understanding of the pharmacokinetics by clinicians and clinicians’ confusion about dosage. Next, he says, there is a stigma, in the mind of some physicians, associated with methadone’s use as maintenance therapy for heroin addicts. A third reason, says Bruera, is that methadone’s low cost “creates no incentive for the pharmaceutical industry or for health institutions to invest in clinical trials, marketing or professional education.” The Expert Committee on the Selection and Use of Essential Medicines of the World Health Organization has added methadone to its list of essential drugs and Bruera believes that this will lead to its increased use as an analgesic.

Bruera warns that clinicians should be very familiar with methadone’s properties and actions before using it. He cites the variable half-life of the drug – from 12 to 150 hours – as one important factor. He also notes the fact that it may take up to a week to achieve “steady-state plasma levels.” He also warns that methadone is more potent (requires a lower does to achieve the same effect) than many older opioid conversion charts indicate. Additionally, methadone should be used with caution in elderly patients “because of delayed clearances, psychogenic pain and intolerance of low doses of opioids.” (Cancer Pain Release, 2005;18(1))

PUBLIC POLICY NOTES

* A new federal law will create a national database of medical errors that can be used to create “best practices” for improving patient care. Information reported to the database cannot be used against practitioners and supporters of the law hope that it will encourage greater reporting of medical errors. A 1999 Institute of Medicine study showed that “as many as 98,000 people die each year as a result of medical errors.” (Chicago Tribune, 7/30)

* The American Association of Homes and Services for the Aging expects most nursing homes to lose some of their Medicare funds when the changes to the payment system take effect in January 2006. According to the association, the loss of funds comes because the “case-mix classification was flawed” and because the wage index was redrawn. (Modern Healthcare, 8/1)

* A Florida Medicaid demonstration program will provide respite care and counseling for families of critically ill children, who will not be required to be in the last six months of life to receive the benefits. The program will operate through June 2007 in seven pilot sites. (Hospice Letter, 8/2005)

* The fact that Medicare reimburses physicians and hospitals at a lower rate than private insurance causes financial hardships for geriatricians, who cannot bill Medicare patients more than the Medicare rate. Patients over 85 often have multiple illnesses, requiring more time than younger patients. Internist Dr. Holland Addison says, “A lot of physicians stop seeing Medicare patients, and they become second-class citizens.” (RedNova Website, 8/1)

* The Vermont Business Roundtable is proposing that the state legislature address the question of “What stands in the way of reducing the rate of health care inflation while making all Vermonters healthier?” State expenses for health care, including third party insurance, Medicare and private payments, are rising at the rate of $1,000,000 per day. The newspaper article includes a statement that says, “Imagine Vermonters with mandatory Living Wills that would address our end of life treatment rather than leave it to our anguished loved ones, or attorneys and doctors.” (The Burlington Free Press, 8/1)

RESEARCH AND RESOURCE NOTES

* The current issue of Advances, the newsletter of the Robert Wood Johnson Foundation, is online at www.rwjf.org/index.jsp. Articles include “Three Keys to the Perceived Effectiveness of Chronic Care Teams” and “Health Care Organizations’ Efforts to Reduce Racial Disparities in Health Care.” Click on “Publications and Resources,” then on “Newsletter.” (Advances, Issue 2/2005)

* A webcast, “Cash and Counseling: Part of the Long Term Care Answer,” is available from the KaiserNetwork at www.kaisernetwork.org. The briefing examines the results of the first phase of the Medicaid program that allows beneficiaries to use an individualized allowance to hire personal caregivers or purchase items for independent living. (KaiserNetwork Website)

* A new website, whowillcare.net, has been launched by the American Network of Community Options and Resources and United Cerebral Palsy to raise public awareness of the demands for services for people with disabilities and the elderly. Visitors to the website are provided with a form to write their congressmen urging them to address the caregiver crisis. (WhoWillCare Website)

* The website of the National Coalition for Cancer Survivorship (NCCS) has sections devoted to palliative care and symptom management, practical tools for dealing with the challenges of cancer and a cancer resource guide. See www.canceradvocacy.org. (NCCS Website)

* Before and after the death of her mother, Wall Street Journal staff writer Tara Parker Pope “embarked on a crash course of sorts about death.” She recommends the following books: How We Die, by Sherwin B. Nuland; Final Gifts, by Maggie Callahan and Patricia Kelley; Motherless Daughers, by Hope Edelman; What’s Heaven, by Maria Shriver; and When Dinosaurs Die, by Laurie Krasny Brown and Marc Brown. (The Wall Street Journal, 8/2)

* “Delivery of Preventive Services to Older Adults by Primary Care Physicians” reports on a cross-sectional analysis of the 2000-2001 Community Tracking Physician Survey. The study sought to “identify characteristics of physicians and their practices that are associated with the quality of preventive care their patients receive” and determined that the proportion of Medicare beneficiaries receiving certain services was “below national goals.” (JAMA, 2005;294:473-481)

* A study from the Indiana University Center for Aging Research, which first appeared in the Journal of Palliative Medicine, says, “Modern healthcare is not adequately addressing patients with serious medical conditions who frequently suffer psychological, relational and spiritual distress.” Patients who participated in support groups had less death anxiety and depression. (Hospice Letter, 7/2005)

OTHER NOTES

* Elite, a small company specializing in controlling the release of medicine, is working on abuse-proof forms of OxyContin. “The idea is to put in a capsule identical-looking beads sprayed with either the ingredient in OxyContin or another medicine that can counteract OxyContin’s effects if crushed.” Elite is also working on a formulation of OxyContin that can be given once a day, rather than twice. (The Record, 7/29)

* In its press release, Everest announced itself as the first “nationwide funeral concierge service. Premiering as an independent consumer advocate in the death care arena, Everest provides impartial advisors who empower individuals with on-demand unbiased information to prepare for the end of life, whether their own or a loved one’s.” (Business Wire, 8/3)

* Inmates who are volunteer caregivers at prison hospices “always have an internal awakening,” says Kathy Soucy, patient care manager for South Jersey Healthcare Hospice Care. Joanne Anderson, who trains the caregivers, says the changes are apparent within weeks. “Men are taught not to cry. But I see the tears…. They get close to people and care about them.” (The Philadelphia Inquirer, 7/15)

* The Missoula, Montana, Life’s End Institute will cut staff and find smaller office space in order to continue its work. Because of decreases in grant funding, Life’s End is negotiating with other organizations for possible funding and space. The organization was founded by Ira Byock and Barbara Spring, “two major figures in the study of death and dying.” Lilly Tuholske, director, says, “We’ll be here a year from now.” (Billings Gazette, 8/5)

* Palliative care and hospice programs for terminally ill infants are being opened in the nation’s medical centers. Monroe Carell Jr. Children’s Hospital at Vanderbilt University and Children’s Hospital of Philadelphia both have palliative care programs operating in the NICU, and the Hospice of Greensboro accepts infants. The article says, “Many doctors say they have gotten better in gauging when babies are experiencing severe pain and other end-of-life symptoms and are better able – and more willing – to treat them.” (The Wall Street Journal, 7/26)

* Diane Monson, one of the plaintiffs in the recent US Supreme Court marijuana ruling, joined Calvina Fay, executive director of Drug Free America Foundation, and Dr. Eric Voth, chairman of the Institute on Global Drug Policy, on NPR’s News & Notes for a discussion of the pros and cons of legalizing medical marijuana. Go to www.npr.org, click on “Archives” and then on “News & Notes With Ed Gorton.” Put “Diane Monson” (without the quotes) in the search box. (NPR’s News & Notes, 6/7)