The Hospice e-News

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

Week of July 25, 2006

…a service of Florida Hospices and Palliative Care

 

 

EXPERTS CALL FOR IMPROVED PALLIATIVE AND END-OF-LIFE CARE

 

In the recently issued State Initiatives in End-of-Life Care, 35 experts mapped the future of reform of end-of-life care.  In previous issues, HNN has reported on issues addressed in this publication.  In this issue of HNN, the focus is on the article titled “Scaling Up and Mainstreaming Successful Approaches.”

 

At the top of the list for change is advancing palliative care.  Dr. Joanne Lynn, senior scientist with the RAND Corporation, says that patients who have life-threatening diseases frequently live in an “indistinct zone of ‘chronic illness’ that has no specific care delivery system.”  This raises the question, “How might hospice, palliative care in other settings, and good chronic care be integrated into one seamless system?”  Lynn answers that question by suggesting that the arrangement for care remain with patients across all settings.  The care system, says Lynn, should be designed to mainly support the three common “trajectories of dying” – cancer, failure of major organ systems, and dementia or dwindling away.  Palliative intervention should be offered at an earlier stage, Lynn says.  Other experts recommend the development of standards as a way of ensuring quality. 

 

Institutionalizing good models of care is another way to advance palliative care.  Dr. Charles Van Gunten, director of the Center for Palliative Studies at San Diego Hospice and Palliative Care, says that hospice should be part of comprehensive care.  “We must give up our sense of ‘specialness’ and connect with the whole house of medicine,” says Van Gunten.  He urges hospice training relationships with healthcare training institutions, schools of social work and seminaries.  Hospice also helps “shape palliative care models in hospitals and nursing homes.”  Dr. Diane Meier, director of CAPC, wants palliative care to become a sub-specialty of other specialties such as family medicine.  Meier wants to see the federal government “fund a 20-year initiative to train nearly 500 academic faculty in palliative care, enough to guarantee three such faculty in every medical school.”

 

A third factor in advancing palliative care is achieving a balanced pain policy.  June Dahl, PhD, is professor of pharmacology at the University of Wisconsin School of Public Health.  Dahl says it is “morally unacceptable” that so many people still die in pain.  Dahl wants to see the “regulatory climate improved so that doctors can prescribe controlled substances without fear.”

 

In addition to advancing palliative care, there are decision-making issues which need to be faced.  Some of the experts raised questions about the legal and bioethical foundations of autonomy.  Many believe palliative care has been too narrowly defined, resulting in patients who are “viewed inaccurately as isolated, mostly rational beings, oriented toward facing death squarely, with unchanging treatment wishes that are best determined exclusively by themselves for themselves.”  Thomas H. Murray and Bruce Jennings, authors of Improving End-of-Life Care: Why Has It Been So Difficult, say, “We must rebuild, reinforce, and reinterpret our laws, institutions, and practices around the acknowledgement that dying is an interpersonal affair, that it is not undergone strictly by individuals.”

 

In the advance care planning arena, “many experts want surrogacy to be given priority over living wills and urge greater government involvement in promoting this approach.”  Emphasis should be placed on durable powers of attorney, say many experts, and advance care planning electronic registries should be promoted. 

 

Many of the experts endorsed the POLST program (Physician Orders for Life-Sustaining Treatment).  Dr. Susan Tolle, director of the Center for Ethics in Health Care at Oregon Health & Science University, says, “The patient-in-motion will be a big challenge for the future.  So many people move from one place to another in the last 30 days…  We need to accomplish seamless transitions.  For those with late-stage, serious illness, advance directives are inadequate by themselves because they are often vague and won’t ensure respect for your wishes in the present, near the time of death; this is where POLST has them beat, hands down.”  (State Initiatives in End-of-Life Care, 5/2006)

 

 

FUNERALS INCLUDE MARCHING BANDS AND ICE CREAM TRUCKS

 

The New York Times says it’s your funeral and you can serve ice cream if you want to.  Robert Tisch, chairman and director of Lowes Corporation, chose the marching band and a service at New York’s Avery Fisher Hall.  Planners for the funeral of Harry Ewell, who had been an ice cream vendor, had his old truck lead the funeral procession and supplied popsicles after the service.  It’s all part of baby boomers’ “new consumer expectations and fewer attachments to churches, traditions or organ music,” the article says.  Funeral directors are being forced to act as party planners and some party planners are getting into the funeral act.

 

Ron Hast, publisher of Mortuary Management and Funeral Monitor, says, “We’re heading in the direction of event planners.”  By law, neither food nor coffee may be served in funeral homes in New York and New Jersey, so “forward-thinking funeral directors are bringing in hospitality like food,” Hast said.   But Bob Biggins, president of the National Funeral Directors’ Association, says that funeral homes don’t always appreciate the competition.  “It’s not like planning a wedding or helping out with a reception,” Biggins said.  “Funeral directors respond to families’ needs at any hour of the day in a short period of time.”

 

Mark Duffey, of Houston, began the first nationwide funeral concierge service last year with his company,Everest Funeral Package.  Subscribers pay $995 or a monthly fee and several hundred have signed up.  One family wanted their father’s service held on the 18th green of dad’s favorite golf course, because that’s where he was on Sunday mornings instead of church.  Another person wanted friends to ride Harleys and scatter his ashes over his favorite road. 

 

Duffey says that more families choose cremation because the lack of a body frees them to hold the service wherever they want.  “The body’s a downer, especially for boomers,” according to Duffey. 

 

Duffey suggests a five-minute time limit for speeches at the service.  “Don’t ad-lib,” he says, “Get up and read it.  It’s OK, people expect it.”  David E. Monn says that the biggest threat to a well-orchestrated service is long speeches.  “No more than three minutes,” he said.  “It doesn’t’ matter how much you loved someone, after you’ve heard somebody drone on for five minutes you’re annoyed.  It’s about poignant moments.  Maudlin is not poignant.”

 

Lynn Isenberg’s experiences at her father’s and brother’s funeral were the impetus for a book, The Funeral Planner.  She is now working on a TV pilot for the Lifetime channel and has a contract for two more novels using The Funeral Planner’s main character.  She also started her own business, Lights Out Enterprises, which assists in funeral planning and features a tribute video.  She’s been asked for a disco-party funeral on the top of a mountain, with friends coming dressed in disco outfits.  And for an auctioneer, she recommended that words from the eulogy be printed on auction paddles so that guests could hold them up during the ceremony.  (The New York Times, 7/20)

 

 

RESEARCH & RESOURCE NOTES

 

*  Researchers at Cornell University reported this week that treatment with naturally-produced antibodies appear to halt Alzheimer’s disease.  Six of eight patients in an 18-month clinical trial had the disease either stopped or slightly reversed.  Those results were similar to an earlier German study.  Phase II trials are underway, with Phase III set to start next year.  The report was made to the 10th International Conference on Alzheimer’s Disease and Related Disorders in Spain.  (The Houston Chronicle, 7/19)

 

*  A new report by Health Forum, an AHA subsidiary, says that nearly 27% of hospitals it surveyed are offering complementary and alternative medicine (CAM) programs to patients.  The East North Central Region – Wisconsin, Illinois, Indiana, Michigan and Ohio – offer more CAM services than other regions.  CAM services are usually paid for by patients.  (Health Forum E-mail, 7/19)

 

*  The Case of Terri Schiavo: Ethics at the End of Life, edited by Arthur L. Caplan, et al, is reviewed in the current JAMA.  Reviewer Dr. Paul Bascom says that the book “is a wide-ranging collection of documents relevant to the case.”  Different sections treat the right of individuals to refuse life-sustaining treatment, legal briefs and opinion pieces from the case’s journey through the Florida courts, the involvement of national political leaders, the struggle within the Catholic church over the withholding of hydration and nutrition, and the aftermath of the controversial case.  Bascom writes that the book is a valuable academic resource.  It “can be read as the response of those representing the established bioethical consensus in this country.”  But, he says, it “could have served the goal of attempting to understand the roots of many American’s refusal to be persuaded by and to trust the established legal and bioethical standard.”  (JAMA, 2006;296:339-340)

 

*  The Institute of Medicine recently reported that at least 1.5 million Americans are harmed or killed by medication errors – either in the prescription itself, in the dispensing of the medication or in the taking of the medication.  Hospital medication errors are so extensive that, on average, a hospital patient will have one medication error per day of hospital stay.  In addition to the frequency of the errors, the estimated cost of treating hospital-related drug injuries is $3.5 billion per year.  The report says that the adoption of electronic prescribing by doctors, standardized barcode systems for dispensing and checking drugs and better patient education about the risks of drugs could avoid many of the errors.  (The Washington Post, 7/21)

 

*  One of two healthcare workforce studies recently published in the July-August issue of Health Affairs reports that the nation’s supply of caregivers to keep seniors at home as long as possible “may hinge significantly on Medicaid funding for home care and similar services.”  Lead author Stephen Kaye, of the University of California, San Francisco Institute for Health & Aging, says that the lack of certification to ensure quality of caregivers, low wages, few benefits and high turnover mean that there will be a struggle to meet the demand for qualified workers.  (Modern Healthcare, 7/17)

 

 

HOSPICE NOTES

 

*  Arizona’s Hospice of the Valley has received a $276,000 grant to enlarge its medical education program to include seminars, online courses and clinical practice which will be required for all Maricopa County primary care medical residents.  Student progress will be measured by an online component developed in conjunction with the Mayo Clinic.  (The Arizona Republic, 7/17)

 

*  Bernadine Parks, a clinical counselor at Hospice of Dayton’s Pathways of Hope, says that grief is a journey.  Parks encourages those who have never lost a loved one before to seek help.  Park adds that while many think that coping with the funeral is hardest, the subsequent weeks and months are just as hard.  A newsletter from the Hospice of Dayton suggests acknowledging anger, forgiving yourself, avoiding rushing back into social activities and being aware of self-medicating activities such as drinking, over-working or over-eating.  (Dayton Daily News, 7/18)

 

*  Novato, California’s Dr. Tom Gross says that hospice is misunderstood by physicians, patients and families alike.  When Gross suggested to a patient’s oncologist that perhaps hospice could help with pain control, home care and diet, the oncologist was furious at Gross’ interference, telling him that the patient would receive no more radiation if he entered hospice, and that, in fact, hospice would “kill him.”  Gross makes the case for early entrance into hospice, saying that it’s never too early to ask, “Is it appropriate to seek help from hospice at this time?”  (Marin Independent Journal, 7/17)

 

*  Humorist Art Buchwald was discharged from hospice on July 1, as planned, and is enjoying life on his screened-in porch on Martha’s Vineyard.  For years, Buchwald was the ringleader in rounding up Vineyard residents for cocktail parties.  He says that one of his jokes is that he wants to be cremated and have his ashes spread over all the cocktail parties on the island.  “I’m as happy as can be, enjoying the whole thing.  You have a chance to say goodbye.  It’s a marvelous thing.”  (The Boston Globe, 7/16)

 

 

OTHER NOTES

 

*  The Minnesota Medical Association has persuaded the American Medical Association to ask the Environmental Protection Agency to study the public health consequences of disposing of unused prescription drugs.  The usual recommendation for disposal is to flush them down a toilet, but new water tests have “detected dozens and dozens of chemical, from depression and cholesterol medications to ibuprofen and caffeine.”  Some are excreted in human waste, but many are not, and it is those that are flushed that concern the Minnesota Medical Association.  (Minnesota Public Radio, 7/19)

 

*  A new Florida law, which took effect July 1, will let cancer patients donate unopened medicines to people without healthcare coverage.  Official call the law “a first step,” since it will only allow the donation of drugs that have been controlled by an institution – patients may not donate drugs that they have at home.  Plans are underway to push for an expansion of the law next year.  (The Sun-Sentinel, 7/18)

 

*  Several experts have been interviewed about the accusations of Louisiana’s attorney general that a doctor and two nurses committed “plain and simple homicide” by giving lethal injections to four critically-ill New Orleans patients in the wake of Hurricane Katrina.  The experts say that it “had to be more complicated” than that.  The article says that one possibility is that the doctor and nurses committed mercy killings, but one legal expert says that under the circumstances, “It is not clear that any jury would convict them.”  Other experts say that the patients may have been suffering and required high doses of pain medications that may have hastened their deaths.  (The New York Times, 7/20)

 

*  Dr. Joel S. Policzer, national medical director of Vitas Innovative Hospice Care, says that while there is a “rising number of high quality home healthcare providers available to meet patients’ diagnostic, therapeutic, rehabilitative and end-of-life care needs,” the number of home visits by physicians has not kept pace with the need.  The AMA says that the major obstacles are “reimbursement issues, lack of physician education in home care and a low comfort level providing medical care without the traditional office or hospital support structures.”  (Caring, 6/2006)

 

 

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. 

 

Thanks to Kathy McMahon and Don Pendley for contributions.