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HOSPICE NEWS NETWORK

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

Volume 14, Number 4January 26, 2010

A Service of State Hospice Organizations

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ARTICLE EXAMINES SUPPORT FOR ADVANCE CARE PLANNING

“Garnering Support for Advance Care Planning,” in a recent JAMA, says the recent media furor over whether Medicare reimbursement to physicians for advance care planning (ACP) visits, aka “death panels,” is “more than a political maneuver to discredit healthcare reform efforts.” It actually serves two useful purposes: 1) it “provides valuable insights” on how the public actually views ACP, and 2) it furnishes a lesson on how to promote ACP.

Section 1233 of HR 3200, America’s Affordable Health Choices Act, would have reimbursed clinicians for a visit in which end-of-life care planning and documentation were discussed. Many politicians and commentators “distorted” that section “into a mandate by which older and disabledindividuals would be forced to forgo life-sustaining treatments.” Authors Terri R. Fried, MD, and Margaret Drickamer, MD, say that came about out of the “history of and prevailing attitudes toward ACP.”

For a decade before the Nancy Cruzan case, ACP was a part of both medical care and legislative activity. After the Patient Self-Determination Act of 1990, all agencies receiving Medicare or Medicaid funds had to ask about advance planning documents and offer help in completing them. At that point, “the focus of ACP became the documentation ofdirectives regarding the care that individuals would not receiveat the end of life.”

However, the recent “death panels” uproar, and the lack of support for ACP associated with it, exposed a fallacy about end-of-life beliefs: not all people are concerned about receiving too much care, some are worried about receiving too little. The article cites many well-documented reasons for not planning for end-of-life care, and says, “Advance care planning may best be considered a part of medicalcare similar to counseling about exercise, smoking cessation,dietary change, and cancer screening; ie, activities that aregood for individuals but which they may not want. Unlike thesebehaviors, however, ACP may not even be recognized as somethingthat patients should do.”

How, then, to energize public support for ACP? The authors say that opponents of the healthcare bill “were able to convince the public that ACP restrictedchoice,” therefore supporters need to publicize that it actually facilitates it. Rather than discussing ACP only when the clinician thinks further care is inappropriate, physicians should “be prepared to accept whateveroption an individual chooses by including a consideration ofall reasonable treatment alternatives. Clinicians and policymakers must be clear that ACP is not the means for addressingissues of futility or the high costs of end-of-life care.”

Additionally, a public message supporting ACP is needed. Encouraging participation “must occur on the population level.” As with other healthcare campaigns, “This effort requires increasing the public'sawareness of ACP by providing accurate information about thebenefits of engaging in ACP, the potential negative consequencesof failing to engage, and strategies to overcome barriers toengagement.” Public service announcements are suggested.

Finally, supporters of ACP should reach out to religious institutions. The authors say, “The promotion of ACP may be most effective if it takes advantageof situations in which individuals overcome their reluctanceto think about death and dying to engage in other forms of planningfor the future.” Persons planning their estates or funerals could be presented with ACP information, as they are already in situations where they must “overcome their reluctanceto think about death and dying.”

The article concludes by saying, “Convincing the public of the benefits of ACP as aprocess to promote choice will help generate widespread supportand demand for this practice to be a reimbursable part of medicalcare.” (JAMA, 2010;303(3):269-270)

RESEARCH & RESOURCE NOTES

* Idelle Davidson, author of Your Brain After Chemo, writesabout the “brain fog” that chemotherapy recipients often experience, also called “chemo brain.” She cites studies showing that carmustine, cisplatin and cytarabine are “more toxic to healthy brain cells than to cancer cells,” and that 5-fluorouracil damages healthy immature immune system cells and oligodendrytes. Others disrupt the formation of new brain cells. A mouse study of insulin-like growth factor (IGF-1) shows promise in reversing the damage. (The Huffington Post Website, 1/22)

* “Provision of Spiritual Care to Patients With Advanced Cancer: Associations With Medical Care and Quality of Life Near Death” reports that patients whose medical team offers high levels of support for spiritual needs got more hospice care than those who were not so well supported. Patients who were highly religious and used that as a coping mechanism also got less aggressive end-of-life care. Patients with spiritual support from the healthcare team and pastoral care visits had higher quality-of-life scores near death. (Journal of Clinical Oncology, 2010;28(3):445-52)

* “Racial and Ethnic Disparities in Pain: Causes and Consequences of Unequal Care,” in The Journal of Pain, is a literature review of articles on disparities in pain treatment that were published between 1990 and 2009. The abstract says that, despite the attention given healthcare disparities at all governmental levels, the issue continues to be “missing from publicized public health agendas and health care reform plans. … A robust research program on disparities in pain is needed, and the results must be successfully translated into practices and policies specifically designed to reduce and eliminate disparities in care.” (The Journal of Pain, 2009;10(12):1187-1204)

* “Culture of Death Denial: Relevant or Rhetoric in Medical Education?” examines medical education and training on death and dying, and how “the culture of death denial” affects physician reaction and behavior. Author Tara Tucker, MD, traces cultural change about attitudes toward death from an expected early occurrence before the Middle Ages, to a “newly conceived fear of dying” in the twelfth-fifteenth centuries, to the current era’s protection from death. Tucker says that the place to teach medical students about death and dying is not in the lecture hall, but to “meet students where they are, … listen to their needs and what they bring to the experience, and … teach them with courage.” (Journal of Palliative Medicine, 2009)

* Dr. Pauline Chen writes that doctors “rarely, if ever” come to understand what family caregivers do unless they have to participate in the care of their own families. Dr. Arthur Kleinman, of HarvardMedicalSchool, says, “We’ve had outstanding diagnoses and very careful attention to defining the problem. But once the problem is defined and the limited pharmacological interventions prescribed, there has been neither interest nor knowledge about the rest of the aftercare, even in the most simple parts like finding a home health aide or getting a needs assessment by a social worker.” Chen hopes that the recent position paper on working with caregivers, by the AmericanCollege of Physicians (see HNN, 1/19), may spur changes in the profession. (The New York Times, 1/21)

PUBLIC POLICY NOTES

* On his last day on the job, New Jersey Governor Jon Corzine (D) signed a bill legalizing medical marijuana in the state. The law, which will take effect in six months, prohibits people from growing their own marijuana. Instead, it will be dispensed through “alternative treatment centers.” The Star Ledgerarticle also notes that designated caretakers who pick up the drug for a patient will be required to undergo a criminal background check. (The Star-Ledger, 1/18)

* Ohio’s Medicaid Hospice Benefit money for the 2010-2011 budget is tied up in litigation over $250 million in tobacco settlement funds. Ten to fifteen percent of the patients and the funding of the Hospice of North Central Ohio come from Medicaid, and its expenses have increased dramatically with the decline in the economy. The Ohio Hospice and Palliative Care Organization commissioned a report on the Medicaid Hospice Benefit and the cost benefits of hospice which will be submitted to the legislature. OHPCO hopes to have the Medicaid benefit be mandated rather than optional. (The Times-Gazette, 1/22)

* TennCare officials have been asked to trim Tennessee’s Medicaid budget by seven percent. Inpatient hospital services would be capped, doctor visits and lab and x-rays would be limited, and occupational, speech and physical therapy and hospice would be completely eliminated. Don Pounds, CFO of Baptist Memorial Health Care Corporation, said that the decline in tax revenues have made “the state budgets of Arkansas, Tennessee and Mississippi the biggest challenges right now for health care in the Mid-South.” (The Commercial Appeal, 1/17)

* Dr. Bernadine Healy is health editor of US News & World Report and former head of the National Institutes of Health. Healythinks that the outcome of healthcare reform may be that, “The government, unbeknownst to many seniors, will rein in their health expenditures ever further by imposing cost-benefit hurdles.” She anticipates that the elderly will be penalized the most if the new reliance on comparative effectiveness research results in denying needed care, that hospital care will be restricted while hospice and palliative care will be expanded. She recommends being “informed as never before,” taking advantage of free end-of-life counseling, having a living will, and lining up “family members plus a good doctor who will support your wishes.” (US News & World Report, 2/1)

HOSPICE & PALLIATIVE CARE NOTES

* The Neviaser Charitable Foundation has donated $2.5 million to establish the Neviaser Family Community PedsCare Endowment Fund for Jacksonville’s Community Hospice. The Fund will provide hospice and palliative care for children. Susan Ponder-Stansel, president and CEO of Community Hospice, said, “We are immensely grateful to the Doris and Charles ‘Buddy’ Neviaser family for their strong support of Community Hospice.” (Jacksonville Business Journal, 1/21)

* In Illinois, Jen Conley, the music therapist at DeKalb County Hospice, is producing a CD of 18 original hospice songs, with most written by patients and their families. The DeKalb County Community Foundation is supporting the project with a grant, and CDs will be for sale to the community, though free to hospice patients and families. Kara Christensen, whose father was one of the patients who contributed to the CD, said, “It’s nice to have a song to remember all those good times. We have told people it was one of, if not the best, thing that happened to us throughout the whole hospice experience.” See this link for the article. (The Daily Chronicle, 1/21)

HAITI DISASTER NOTES

* In Boca Raton’s Hospice by the Sea, more than 70 employees are natives of Haiti. CEO Paula Alderson says, “This disaster in Haiti has really caused a crisis here.” According to the article, medicine is a “popular career choice” for Haitian immigrants, and nursing homes and hospitals across South Florida are affected. (WPBF Website, 1/19)

* In Fort Myers, Florida, Hope Hospice’s professional grief counselors reached out to the Haitian community with support sessions offered free of charge. In the article, CEO Samira Beckwith said, “Many in our community have either learned the fate of loved ones in Haiti, or they are awaiting word. During this difficult time, our counselors are available. The emotional impact of this human tragedy will be felt for some time to come. We are here for our community.” (The News-Press, 1/18)

* The National Hospice Foundation has used money from its Disaster Relief Fund to send $5,000 each to Holy Angels Hospice, Partners in Health, and the Hopital Albert Schweitzer for their work in Haiti. J. Donald Schumacher, NHF CEO said, “Knowing that the need for assistance is both immediate and long-term, NHF will monitor the situation in Haiti and make additional donations during the long period of rebuilding.” (PR Newswire, 1/20)

OTHER NOTES

* MaxFund is a no-kill animal shelter in Denver where about 15 volunteers serve as “hospice fosters,” taking home terminally ill animals whose owners have dumped them at the shelter. A USA Today article says that few shelters have such programs, because the care is costly and there are millions of healthy animals to house and find homes for. And few volunteers are willing to take on such a chore. One who does, Tami Tanoue, acknowledges the pain she feels when losing an animal, but says, “The opportunity to get to know another animal, even if only for a little while, is a wonderful gift.” (USA Today, 1/20)

* In Chicago, WeissMemorialHospital offers bimonthly workshops on advance directives. Elder law attorney Kerry Peck says, “The failure to plan allows for confusion and (for) the decision regarding your health care to be made by someone else you may not want to have that power.” He adds that discomfort in talking about death can “lead to people waiting too long to execute advance directives.” In Illinois, end-of-life forms can be downloaded from the Illinois Department of Public Health. (Chicago Tribune, 1/20)

* Dr. Mark Popenhagen, a pediatric psychologist at LoyalaUniversityMedicalCenter, became interested in pain management during a post-doctoral fellowship at St. Jude Children’s ResearchHospital in Memphis. Popenhagen’s goal is for his child patients to be able to function, and he emphasizes aggressively treating pain before it can become chronic. (The Chicago Sun-Times, 1/20)

Glatfelter Insurance Group is the national sponsor of Hospice News Network for 2010. 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

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