The Hospice e-News

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

Week of July 4 & 11, 2006

…a service of Florida Hospices and Palliative Care

MEDICAL CARING SHOULD LAST LONGER THAN TREATMENT

Karen Donley-Hayes remembers sitting with her best friend, Ashley, in the oncologist’s office the day he told Ashley that his team was admitting defeat in the fight against her metastatic breast cancer. Once he told her this, he left the room. An article in HealthDay News says that Ashley asked Karen if she thought she could live until Christmas. Donley-Hayes thought, “What do we do now -- we don't have anybody to ask these questions of -- who do I approach to know where we stand now?”

Donley-Hayes wrote an essay in the June 21 JAMA in which she wondered why the medical team “couldn’t have done just a little more in the few weeks [Ashley] had left.” “For the year and a half of her illness, these people had become, in a way, a part of her family. … When no more chemotherapy or radiation would be administered, they were gone. Looking back, I see this as a sad departure, almost an abandonment. They were there to help her try to live, but they were not there to help her die,” Donley-Hayes wrote.

Dr. Karen Ogle, professor of palliative medicine at Michigan State University, says that Ashley’s story is “sadly familiar.” Too frequently, medicine draws “this sharp line where the patient makes this abrupt transition to hospice.” Familiar faces are gone, and an unfamiliar treatment team arrives.

Ogle and others would like to see a more phased-in transition. She suggests discussing quality of life and pain management issues very early in treatment. When necessary, then, curative measures can slowly take a backseat to palliative care.

Ogle also says that medical teams can, and sometimes do, remain actively involved in treatment when a patient enters hospice, even up to the point of death. Such integrated palliative care is growing across the US, the HealthDay News article says, with more than half of hospitals larger than 100 beds offering palliative medicine services and more than 2,000 board-certified palliative medicine physicians.

Donley-Hayes, a former paramedic who is now a medical editor, says that when Ashley’s medical team left, “We just didn't know where we stood, what to do or how to proceed. And if we felt that rudderless, what does the typical person who is ill, or their support network, feel? How do they deal with this?” “It's a disservice to professionals in medicine to be removed from this part of a disease, because it's part of it -- and the most difficult part,” she says. (HealthDay News, 6/20)

ARTICLE SAYS GOOD THINGS IN STORE FOR PAIN REGULATION

In the June issue of PainAdvocacyCommunity, Myra Christopher, president and CEO of the Center for Practical Bioethics, says that “some good things are in the works” concerning regulatory issues which affect pain management. In an interview published in that issue, Christopher says that the Center for Practical Bioethics, the Federation of State Medical Boards (FSMB) and the National Association of Attorneys General (NAAG) are “discussing the possibility of using our collective influence, credibility and relationships to establish a national work group to research and look at the spectrum of pain policy issues about which people are concerned.”

Christopher says that the term “questionable practice,” as applied to pain management, is “murky.” In some cases there is professional misconduct, in others criminal conduct. The proposed work group wants to analyze administrative and criminal cases from the last several years to distinguish administrative cases (as an example, those with poor record-keeping) from criminal cases (such as illegal prescriptions or criminal diversion). The results of the analysis would lead to a best practices document on how each sort of case should be handled.

Christopher hopes that “law enforcement at both the federal and local levels and other stakeholders will be at that table. We want this initiative to be an inclusive and collaborative effort.” When asked how she sees this effort a year from now, Christopher cautions that she doesn’t want to promise more than can be delivered, but hopes that the group will come together, get appropriate funding and be nearly ready to publish a report. If that happens, they would go on to plan a national conference to “bring law enforcement, pain medicine, and consumer advocates together to discuss stages toward … [a] balanced pain policy by developing methodologies for ensuring better pain treatment while maintaining effective enforcement of those illegally diverting prescription drugs.”

See www.partnersagainstpain.com/painadvocacycommunity/pdfs/Vol0606.pdf for the complete interview. (PainAdvocacyCommunity, 6/2006)

RESEARCH AND RESOURCE NOTES

* PC-FACS (Fast Article Critical Summaries for Clinicians in Palliative Care) is a service of the American Academy of Hospice and Palliative Medicine (AAHPM). This month’s issue, at www.aahpm.org/email-data/message/message-2006-06-30_1300.html, has articles on surrogate decision makers, morphine tolerance, oxycodone for treatment of cancer pain and others. (AAHPM Website, 6/2006)

* Carefinder is a new caregiver resource website furnished by The Alzheimer’s Association. See www.alz.org/carefinder for information on planning, options for care, care coordination, resources and support and an interactive tool for deciding on care options. (The Wall Street Journal, 6/27)

* The June issue of PainAdvocacyCommunity, containing a report on the recent Congressional Briefing on Pain, a press release announcing a grant to PPSG to evaluate laws and regulations impacting patient access to pain relief, links to pain management education courses at www.pain.com, resources for cancer care, and information on such future events as World Hospice and Palliative Care Day and Cancer Advocacy Now’s Capital Hill day is online at the Partners Against Pain website. See www.partnersagainstpain.com/painadvocacycommunity/pdfs/Vol0606.pdf. (PainAdvocacyCommunity, 6/2006)

* The Mature Market Institute, a resource center offered by MetLife Inc., has recently published, “Becoming an Effective Advocate for Care.” Call 203-221-6580 for a copy, or visit www.maturemarketinstitute.com and click on “Since You Care ® Guides.” One of the guides is on hospice care. (The Wall Street Journal, 6/27)

* A recent AARP analysis of 193 brand-name prescription drugs found that their average wholesale prices rose 3.9% in the first quarter of this year, nearly four times the rate of inflation. The time period coincides with the implementation of the new Medicare drug benefit. A second survey by Families USA “found that virtually all of the new private drug plans under Medicare raised their prices for frequently used medicines between mid-November 2005, when enrollment began, to mid-April 2006.” A NYT editorial says, “The surveys make it clear that health plans and individual consumers will need to be especially vigilant to keep spending on medications within reasonable bounds.” (The New York Times, 6/26)

* A study from the Center for Studying Health System Changes says that the current nursing shortage has eased a little. But the author of the study, Jessica May, says, “The shortage is going to intensify in the future and we’re concerned about how providers will deal with it.” May recommends attacking “nursing’s image problem head-on” and addressing the “dire undercapacity in the nation’s nursing schools.” An article in The Augusta Chronicle says that Georgia’s nursing schools will only be able to graduate about 60% of the 20,000 nurses needed by 2012. (UPI, 6/27; The Augusta Chronicle, 6/26)

PAIN NOTES

* A recent article in Supportive Care of Cancer says, “The factors underlying the choice of opioids for cancer patients in primary care are largely unknown.” “Opioids should be prescribed dynamically in response to the aggressiveness of the cancer, with patients shifting between periods of use and non-use.” Researchers cited the aggressiveness of the cancer and the presence of metastases as “strong determinants of opioid use.” (Obesity, Fitness & Wellness Week, 7/1)

* An article in The Roanoke Times profiled the work of Linda Coulter, a nurse who is certified by the National Guild of Hypnotists and who has a hypnotherapy practice. In treating Bonnie Roy-Hermann, who has arthritis and chronic pain, Coulter told her they could address the chronic pain, but not the arthritis. Roy-Hermann says that Coulter explained that the chronic pain was her body nagging her to tell her she has arthritis, but that she already knew it and needed to learn how to tell her body to shut up. Roy-Hermann continues to use the techniques learned from Coulter and has found significant relief from her pain. (The Roanoke Times, 6/24)

* Nurse delegates to the annual ANA meeting passed several measures aimed at protecting the public’s health. They overwhelmingly “voted to oppose initial maneuvers by the American Medical Association and other physician groups directed at limiting the services and care advanced practice and other registered nurses may provide.” They called for RNs to be more involved with government and professional agencies in disaster relief, and to “assist in alleviating the chronic and acute pain that millions of Americans endure by working with policymakers and other healthcare professionals to promote effective pain management strategies.” (US Newswire, 6/28)

END-OF-LIFE NOTES

* Marsha Kay Seff, editor of www.sandiegoeldercare.com, credits hospice and “Mom’s indomitable spirit” with the unexpected length of her mother’s life. “Never has she gotten more TLC heaped upon her,” Seff said. Seff definitely recommends hospice for those willing to forego lifesaving drugs, who want to end “incessant hospital stays” and for those who can find a hospice with a philosophy similar to their own. (The San Diego Union-Tribune, 6/24)

* Dr. Alvin Moss, director of the West Virginia Center for End-of-Life Care, is pleased to find that 39% of West Virginians have completed living wills and/or powers of attorney, nearly double the rate of most other states. He cited additional statistics from a recent survey that showed the percentage of residents rating end-of-life care in the state as “good to excellent” rose from 46% in 1999 to 61% in 2006. Two-thirds of state residents have talked to a family member or friend about what they would want done at the end of life. (Charleston Daily Mail, 6/22)

* By one vote, a California Senate panel killed a bill that would have allowed lethal prescriptions to be written for those who have less than six months to live. The bill was patterned after Oregon’s Death With Dignity Act. Supporters of the bill do not plan to place the measure on the ballot as Oregon did, saying that it would be too expensive. (Los Angeles Times, 6/28; Sacramento Bee, 6/28; The San Francisco Chronicle, 6/28)

OTHER NOTES

* NPR’s Morning Edition’s features an interview with Carol Joy Loeb, a registered nurse and certified music practitioner who works at Baltimore’s Seasons Hospice. Loeb and Dr. Deborah Wertheimer, medical director of the hospice, speak about Loeb’s work with dying patients. You can hear the interview at www.npr.org. From “Programs and Schedules,” choose “Morning Edition,” then “Past Shows.” The show aired on June 29. (NPR’s Morning Edition, 6/29)

* Philip DiSorbo recently left Albany’s Community Hospice, after 27 years as the director of the program, and will become the first director of the Foundation for Hospices in Sub-Saharan Africa. He plans to build partnerships between hospices in the US and those in Africa, with the American hospices providing money and staff to help the African nations grow their hospice programs. (The Times-Union, 6/28)

* Long Island’s Star of David Memorial Chapel was built with video cameras and Internet servers so that mourners who cannot attend a funeral can watch it on live video. The funeral home does not keep archives, but will make a DVD for the family. So far, no other mortuary in the area is offering webcasts, though at least one has considered and rejected it. (Newsday, 6/21)

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.

NHPCO TO LAUNCH “QUALITY PARTNERS” PROGRAM

NHPCO issued a press release to announce the September launch of the new “Quality Partners” program. July’s NHPCO Newsline also features the program and says, “This campaign encompasses 10 key components of quality that our provider members will be asked to affirm.” Those components are:

* Patient- and Family-Centered Care;

* Ethical Behavior and Consumer Rights;

* Clinical Excellence and Safety;

* Inclusion and Access;

* Organizational Excellence and Accountability;

* Workforce Excellence;

* Standards;

* Compliance with Laws and Regulations;

* Stewardship and Accountability, and

* Performance Measurement.

A Newsline article addresses the definition of quality and the challenge of trying to arrive at one. In giving the plenary address at NHPCO’s April Clinical Team Conference, Dr. Diane Meier, director of Mount Sinai’s Center to Advance Palliative Care, reviewed the major national quality initiatives and summarized how the hospice industry measures up on the six domains of quality health care that were identified by the Institute of Medicine in 2001.

Meier says that defining quality care, beyond the level of “I know it when I see it,” is difficult. But, the article says, “If patients and families are to rely upon consistent, reliable high-quality care from their hospice and palliative care providers, there has to be a way to clearly define quality, assess it, measure it, compare it and improve it. Providers need a way to quantify quality. That requires measures that are simple, inexpensive, easy to use, and connected to actual quality of care.”

Quality, the article continues, “can be understood as desired health outcomes, as defined by recipients of health care.” NHPCO president Donald Schumacher says that what’s missing in that “rule of thumb” definition is “consistency – providing the same high level of care to every patient and family.”

Schumacher asserts, “Some hospice people don’t yet understand that payment eventually will be attached to quality measurement. That will be a tremendous motivator, beyond the desire to satisfy yourself and prove to yourself that your contributions to the lives of patients and families are the best they can be and continually getting better.”

Susan Fuglie, CEO of Fargo’s Hospice of the Red River Valley, says that her organization “didn’t know what quality really was, and we didn’t know that we didn’t know.” Accustomed to meeting the minimums for accreditation and certification, the organization gave a “huge, collective ‘aha” when board member Linda O’Halloran helped the Quality Committee understand quality data and implement a quality initiative. Fuglie says they now understand that “quality isn’t just a nuisance but an opportunity for improvement – and everyone can benefit from improved outcomes.” (NHPCO Press Release, 6/30; NHPCO’s Newsline, 7/2006, http://www.seniorjournal.com/NEWS/Eldercare/6-07-03-HospiceOrganization.htm)

SURVEY SAYS HOSPICE PROFESSIONALS SUPPORT PALLIATIVE RADIATION

A recent survey, conducted online by Hospice Letter, found a majority of respondents support palliative radiation for cancer patients. Most, however, believe it should be used on a limited basis, and cite “defining parameters, cost, and limiting use to pain relief and symptom management” as challenges. Many respondents agree that palliative radiation “should be used only to control active pain and not as a measure of pain prevention.”

Jeff Lycan, president and CEO of Ohio Hospice & Palliative Care Association, supports palliative radiation “if it is for symptom management and it is only the dose needed to provide that symptom control.” Mary Jo Hieb, a nurse at AtlantiCare Hospice, says it should be used “only for true palliation of acute symptoms: bone pain, bleeding, seizure activity due to onset of new brain meds.”

Among those who cited cost as a problem was one respondent who said, “A small hospice cannot support palliative radiation under the present budget. If Medicare and Medicaid would consider having the radiation ‘carved out’ or outside of the hospice plan of care, as it is in many managed care insurances, it works well for the patient and hospice. It would help many patients to come into hospice earlier when they and their families could benefit from the hospice support, both in symptom management and in dealing with the pending death. They would not be waiting to come onto hospice the last few days of life.”

Others think that offering palliative radiation “will open up the doors to a broader range of patients and may help to increase length of stay.” Nate Lamkin, executive director of West River Hospice, says, “Reducing access to treatments like this will further delay admissions and deny services to appropriate patients. While potentially costly, hospice must make every effort to support these treatments if at all fiscally possible. Hospices that do not embrace this philosophy will almost certainly lose market share as palliative care programs become increasingly prevalent.”

Other reasons cited for offering palliative radiation include the ability to offer increased choices to families and the rewarding experience of working with a radiation oncology group. (Hospice Letter, 5/2006)

STATE INITIATIVES IN END OF LIFE CARE PUBLISHES LAST ISSUE

For the last eight years, The Center for Practical Bioethics has published issues of State Initiatives in End-of-Life Care. The policy series, which is online at www.practicalbioethics.org, “advances balanced approaches to pain management policy, consumer protection and professional development.” The final issue in the series, “Focus: The Way Forward,” documents the future of reform as seen by 35 leaders in the field.

In “The Big Challenges in Brief,” a summary of the major challenges as defined by the leaders includes:

* “Shifting reform paradigms”: The challenges here include working to see dying as more of a spiritual process than a medical one, developing new “good death” cultural understanding and rituals, taking “end-of-life care reform public,” making discrimination and diversity care issues a high priority and developing “population-based models of care that ensure continuity and quality across the whole illness trajectory.”

* “Scaling up current approaches”: The challenges here include adjusting our definitions of autonomy, developing consensus standards and a strengthened research base for palliative care, working to “expand, professionalize, and mainstream palliative care,” preventing reform from being tied up in the “abortion wars” and promoting activism.

* “Federal policy change”: These challenges include pushing for federal regulatory agencies to adopt palliative care standards and mandate palliative care in nursing homes and hospitals, working for federal support of a palliative care faculty training program, better defining palliative care and working toward a mechanism for Medicare reimbursement of it, ending the six-month hospice rule, allowing concurrent care, paying for outlier costs, creating nursing home incentives for palliative care, strengthening quality palliative care in nursing homes, funding demonstration palliative care projects, encouraging additional NIH funding of palliative care, balancing the DEA drug enforcement policy as it relates to Schedule II drugs and encouraging CDC to integrate end-of-life care into its work.

* “State Policy Change”: The challenges include working to update state laws to ensure good pain management and health care decision-making policy, urging states to adopt the Federation of State Medical Boards model pain policies, continuing to hold regulatory summits on pain management, helping facilitate public education and discussion on decision-making controversies in health care, financially supporting state end-of-life care coalitions, encouraging a variety of advance care planning decisions that help patients achieve their end-of-life wishes and working to “encourage state units on aging and departments of health to collect data on end-of-life care, include palliative care in comprehensive cancer control plans, and provide consumer education on the issue.”

The article quotes Vermont Attorney General William Sorrell (D) as saying, “We must convince all attorneys general that end-of-life care is the ultimate consumer protection issue and encourage them to become activists in this area.”

HNN will cover other articles in the issue as space allows. (State Initiatives in End-of-Life Care, 5/2006)

RESEARCH AND RESOURCE NOTES

* Researchers at the University of Missouri-Columbia have found that “interacting with animals causes a direct hormonal response in humans that fights depression.” The article highlights the animal-assisted therapy sessions at the Hospice of St. John in Lakewood, Colorado. One patient said that his visits with Joan Anderson’s therapy-trained Yorkshire terriers “make his day.” “Normal medicine doesn’t last nearly as long as the feeling animal therapy gives me,” he said. (The Denver Post, 7/6)

* As part of the National Family Caregiver Support Program, HHS’s Administration on Aging has issued a booklet, “Emergency Readiness Checklist for Older Adults and Caregivers.” The booklet, which is a companion to Aging in Stride – Plan Ahead, Stay Connected, Keep Moving, has checklists which cover the basic three-step approach, 1) knowing the basics; 2) having emergency supplies ready; and 3) making a personal plan. See www.aginginstride.org/emergencyprep/docs/Just_in_Case.pdf to download the booklet. (Aging in Stride Website)

* In “Assessing Pain Intensity in Older Adults,” researchers found that self-assessment scales, which have been validated for older adults, “remain the gold standard for the evaluation of pain intensity in this age group.” Additionally, most dementia patients can use self-assessment scales appropriately. Observational scales tend to underestimate pain and correlate only moderately with self-assessment. (Geriatrics & Aging, 2006;9(6):399-402)

* Researchers have developed “a self-report inventory for identifying beliefs and attitudes that interfere with pain management.” The tool is called the Cognitive Risk Profile for Pain (CRPP). The profile yields a total risk score and nine scale scores on philosophic beliefs about pain, denial that pain affects mood or that mood affects pain, perception of blame, disability entitlement, lack of support, skepticism of a multidisciplinary approach to pain management, a desire for a medical breakthrough, and conviction of hopelessness. (Obesity, Fitness & Wellness Week, 7/8)

OTHER NOTES

* An article in the Richmond Times Dispatch profiles palliative care at Virginia Commonwealth University’s Medical Center. The Thomas Palliative Care Unit, part of Massey Cancer Center, was opened in 2000. The unit’s director, Dr. Thomas J. Smith, says, “Palliative care seeks to use some … hospice skills and apply them upstream.” Of the unit, he says, “We set this up to improve care. For many patients, symptoms go down significantly in 24 to 48 hours.” (Richmond Times Dispatch, 7/5)

* Zelda Foster, who died on July 4, was the first president of the New York State Hospice Association and lobbied the state legislature to set formal hospice standards. As a social worker at the Brooklyn VA hospital, she lobbied so strongly for better end-of-life care that the hospital director reportedly “would take extreme measures to avoid passing by her door.” She has been credited with “introducing end-of-life care to the Veterans Administration.” An NPR program about Foster is online at www.npr.org/templates/story/story.php?storyId=5536172. (NPR’s All Things Considered, 7/5)

* Roughly 100,000 hospice patients will win “reprieves” from hospice for a variety of reasons. Hospice care and attention from family and friends may extend a person’s life, or the doctor may have underestimated the time the person has left or a miracle may happen. About a third of those reprieved will die within six months of release and others go to nursing homes because of chronic diseases. But between 5,000-20,000 will live a year or more. The article is online at www.twincities.com/mld/twincities/news/politics/14971800.htm. (Pioneer Press, 7/5)

Thanks to Don Pendley for contributions.