Hospice eNews

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

Week of October 3, 2005

…a service of Florida Hospices and Palliative Care

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GROUPS OFFER EOL RESOURCES FOR CITIZENS AND PROFESSIONALS

NHPCO, VistaCare and WebMD are offering a free 12-week online program, “Planning Ahead: Understanding Your Choices Before a Health Crisis.” Dr. Ron Crossno, chief medical officer for VistaCare, says that both the Terri Schiavo case and the hundreds of thousands of hurricane evacuees “brought into sharp focus the need to plan ahead, just in case.” Crossno says that the course “has been designed to help participants identify and act upon the elements necessary to insure that their health care wishes are known and carried out.”

J. Donald Schumacher, president and CEO of NHPCO, says, “One of the most frequently heard comments from families who have been served by hospice is: ‘Why didn’t we access care sooner? We wish we had known more about these services long ago.” Schumacher says that because many people get health information from the Internet, NHPCO launched a consumer site, www.caringinfo.org, and “is pleased to participate with WebMD and VistaCare” on the “Planning Ahead” course.

The program began on Wednesday, September 28 and will continue for 11 more Wednesdays. “Planning Ahead” will focus on a specific healthcare planning topic each week, with sessions conducted by an expert in the topic area. The programs also offer class discussion through a message board. All live sessions will be available for later viewing on the WebMD and VistaCare websites.

“Hospice Referral and Care: Practical Guidelines for Clinicians,” a continuing education program for physicians, nurses and other healthcare providers, is also online at www.medscape.com/viewprogram/3345. In October, the three organizations will also co-sponsor an online CME/CE course, “The Last Chance for Comfort: An Update on Pain Management at the End of Life.”

Registration is available at www.webmd.com, www.vistacare.com or http://my.webmd.com/content/pages/23/110141.htm. (PR Newswire, 9/23)

REPORT SPOTLIGHTS ISSUES IN CAREGIVING FOR THE ELDERLY

“Taking Care: Ethical Caregiving in Our Aging Society,” a report issued last week by the President’s Council on Bioethics, says that Americans’ greater longevity brings “profound new social challenges.” “Barring major unforeseen developments,” the authors write, “we are entering an unprecedented phase of our history – indeed, of human history – featuring (1) a new age structure of society, (2) longer and more vigorous old age for millions, (3) new modes of dwindling and dying, and (4) a likely shortage of available caregivers.”

In the first section, the report explores the “dilemmas of an aging society.” Though many seniors remain healthy longer than in the past, they also live long enough to be afflicted with serious chronic illnesses. As baby boomers age, says the report, the demand for care will escalate at the same time that the number of caregivers is dropping. The report cites additional concerns about “pension insecurity, rising costs of health care, shortages of available caregivers, and the insufficient number of good nursing homes.” The Washington Post says, “A crisis in long-term care will soon be upon us.” One major contributor to that crisis is the number of elderly patients with Alzheimer’s disease. Approximately four million Americans now suffer with Alzheimer’s and the number is expected to triple by 2050.

The second section of the report discusses advance directives, saying, “Trying to dictate the precise terms of one’s future care is often misguided or ineffective.”

The report encourages durable powers of attorney for health care, saying, “There is no substitute for human caregivers on the spot, who will regularly be called on to make treatment decisions for those who cannot make them for themselves and whose numerous and evolving everyday duties of caregiving simply cannot be specified in advance.”

Chapter three focuses on the general principles of the ethics of caregiving, with particular attention paid to caring for those with dementia. “The increasing incidence of dementia is forcing – or inviting – us to think in particular about the meaning of human worth,” the authors say. They call the “ethic of equality” the defense of the “floor of human dignity, ensuring that even the most diminished among us is not denied the respect and care that all human beings are owed.”

The authors conclude the discussion on moral boundaries of caregiving by offering four rules to guide “prudent caregivers.”

* “No active killing or assisted killing of another, no matter how painful or diminished a life has become.”

* “No aiming at death as a purpose of action, whether by acts of commission or omission.”

* “No imposing excessively burdensome treatments on others.”

* “No obligation to do what we cannot do in the role of caregiver, but the obligation to see how much we can do without destroying or deforming everything else in our lives.”

The report also includes “clear grounds for forgoing life-sustaining care” – if the treatment is “excessively burdensome” to the patient, if the treatment is useless or if “a better death is possible in circumstances where death is proximate,” such as letting a dying patient remain at home with family rather than going to a hospital.

In the concluding section, the report says that “American society needs to avoid two grave dangers: We need to prevent the worst kinds of betrayal and inhumanity toward the dependent elderly—such as relying on institutions that “warehouse” elderly persons, promoting assisted suicide as an answer to disability, and embracing euthanasia as a solution to the perceived social and economic burden of dependent persons. At the same time, as we aim at the best care possible for the elderly, we must avert the danger of intergenerational conflict over scarce resources, meeting our obligations also to our children and grandchildren, sustaining other social goods, and avoiding a major new drag on the economy that would (among other things) weaken the economic capacity of working families to provide care for their loved ones.”

Among its conclusions, the report opposes euthanasia and assisted suicide, calling for opposition to both practices. The goal of caregiving should be to “benefit the life the patient still has,” not to extend it as long as medically possible.” Policies and procedures need to be developed that “encourage ongoing discussion and coordination among all relevant parties.” The group also recommends the establishment of a Presidential Commission on Aging, Dementia, and Long-Term Care.

The report is available from www.bioethics.gov/reports/taking_care as either a PDF or an HMTL file. (Taking Care: Ethical Caregiving in our Aging Society; Fox News, 9/29; The Washington Post, 9/29)

END OF LIFE NOTES

* Compassion & Choices, a nonprofit organization working to improve care and expand choice at the end of life, will hold a conference at the National Press Club in Washington on October 4, one day before the US Supreme Court will hear arguments in the case of Gonzales vs. Oregon (originally Ashcroft vs. Oregon). Conference speakers will include Barbara Coombs Lee, co-CEO of Compassion & Choices, Charlene Andrews, a terminally ill patient, and Paul A. Spiers, a disability rights advocate. Members of Not Dead Yet, a national disability rights group that opposes legalization of assisted suicide, will rally in Washington on October 5. (US Newswire, 9/29; North Country Gazette, 9/28)

* Lindsay O’Connor, a freelance journalist who nearly died after complications during childbirth, explores the end-of-life lessons that Christians can draw from Terri Schiavo’s experiences. Click on “Women” under the heading “Communities” and scroll down to “Lessons from Terri” at www.christianitytoday.com. (Christianity Today, 9-10/2005)

RESEARCH AND RESOURCE NOTES

* The fall issue of Reform Judaism Online has a discussion guide, written by Dr. Alan D. Bennett, about end-of-life decisions. The issue also contains “Stumbling on the Edge of Life,” a rabbi’s account of the deaths of the parents of a friend and “Together in the Dark,” an interview with UCSF School of Medicine professor Rachel Naomi Remen on end-of-life as a time of wounding or healing. See www.reformjudaismmag.org. (Reform Judaism Online, Fall/2005)

* A study of the results of a palliative care program introduced at an urban, tertiary VA medical center found a significant increase in the number of documented symptoms and the number of care plans. The availability of opioid medication increased, as did the number of DNR orders. The authors say that the results indicate an improvement in end-of-life care. (Archives of Internal Medicine, 2005;165:1722-1727)

* Prognosis for terminal cancer patients is a difficult thing for most physicians to determine. One study found that physicians could accurately predict the date of death within one month only 10% of the time. Researchers have developed rules for assisting physicians, among them the Palliative Prognosis Score, which “combines objective measures with the physician’s global estimate to predict a more accurate prognosis.” (American Family Physician, 2005;72(4):668)

Kaiser Network’s webcast, “Caring for the Elderly: Is There Any Answer to Rising Health Costs?” is available at www.kaisernetwork.org. The same site also contains “Implementing the Medicare Drug Benefit: The Stories Ahead.” (Kaisernetwork Website)

HURRICANE KATRINA NOTES

* Evacuating the elderly in the face of a disaster is a dilemma, and all possible resolutions offer some degree of risk. Because of their fragility, “the elderly fare the worst in a disaster,” says an article in the Los Angeles Times. Traveling when the temperatures are high increases the risk of injury or death, but Dr. Robert Sullivan, of the Duke University Center for the Study of Aging and Human Development, says, “Sometimes you have to accept that, because staying is certain death.” (Los Angeles Times, 9/24; The Baltimore Sun, 9/24; The Houston Chronicle, 9/27)

* While the evacuation from Hurricane Katrina was especially hard on the elderly and disabled, the succeeding weeks are more difficult for caregivers as they scramble to find new services in unfamiliar areas or where those services have themselves been destroyed. Kathleen O’Brien, of the Alzheimer’s Association, says that the problems of caring for Alzheimer’s patients “are probably just going to begin to surface over the next few weeks. We have situations where all of a sudden families are becoming first-time, 24-hour caregivers.” (USA Today, 9/22)

* The Florida Department of Elder Affairs knows of 463 elderly evacuees from Hurricane Katrina, but fears that many more are in the state that are unknown to them and that the numbers will rise as temporary shelters in Mississippi and Louisiana close. In addition to housing for these seniors, there are other questions. “How long will they stay? Who will care for them if they are frail or sick and hundreds of miles from their families? Who will pay for their housing and their health care long term?” (Sun-Sentinel, 9/23)

OTHER NOTES

* “Learning from the Dying” discusses the preclinical course for Harvard Medical School students called “Living with a Life-Threatening Illness.” Real patients, with real life-threatening illnesses, are teachers in the course and the students conduct interviews with “their” patients about the experiences of living with a terminal disease. One student said, “I didn’t want to be the kind of physician who keeps his distance in order to keep his professionalism. The course gave me a template for how to talk about intimate things with patients and gave me permission to do it.” (NEJM, 2005;353:1313-1315)

* “Prisoners of Pain,” in the current AARP Magazine, examines the problems of patients who cannot get pain relief because their physicians are afraid of prescribing opioids. James Campbell, a Johns Hopkins University neurosurgeon, says, “Five years ago we were actually doing a better job at handling pain patients. Now we’ve seen a backslide, and patients are definitely the victims. They’re suffering.” The article is online at www.aarpmagazine.com. Click on “Health,” then on “Prisoners of Pain.” (AARP Magazine, 9-10/2005)

* In an August 19 transmittal (No. 655) CMS set the hospice cap for the year ending October 31, 2005 at $18,963.47. In transmittal 663, CMS has now revised that cap and set the cap at $19,777.51. NHPCO’s Judi Lund Person said that CMS discovered an error in their formula and adjusted the figures after it was corrected. The revised transmittal says that the 2004 cap was “incorrectly computed” and that it will issue further instructions. (Eli’s Home Care Week, 9/5)

* The California Nurses Association has voted to begin affiliation talks with the AFL-CIO. The CNA said that the vote by 500 delegates at its biennial convention was “nearly unanimous.” (Modern Healthcare’s Daily Dose, 9/26)

* When a terminal patient’s symptoms can no longer be managed at home, an appropriate choice may be hospice inpatient care. Such care may benefit the hospital as well as the patient, freeing up ICU beds, reducing direct care costs and creating community good will. (Hospitals & Health Networks, 9/27)