The Hospice e-News

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

Week of March 6, 2006

…a service of Florida Hospices and Palliative Care

BENCHMARKS NECESSARY FOR NEW HOSPICE COPs

Martha Tecca, president of Perforum, a performance improvement company serving the hospice industry, says that hospices and home health agencies considering entering the hospice industry should start benchmarking now to be ready for the new Medicare hospice COPs. The National Quality Forum (NQF) has a draft of preferred practices, “A National Framework for Palliative and Hospice Care Quality Measurement and Reporting.” NQF hopes to “achieve consensus about preferred hospice practices,” with the goal of ultimate development of performance standards and measures.

Tecca says that the most important measures to track now are:

* The percentage of patients who have less pain after 48 hours. Tecca calls this “the single best measure for comparison across hospices.”

* Patients who are in hospice for a week or less.

* Whether patients die in their preferred death location.

* Responsiveness of staff on evenings and weekends, as rated by family members.

* Caregiver confidence, particularly whether the caregiver feels that he or she has enough knowledge to provide a safe environment, even at death.

* Presence of a hospice staff member at the time of death.

* NHPCO’s Stephen Connor, vice-president for research and development, cautions about the leniency bias of satisfaction surveys. People don’t often relate specific problems unless asked, so he suggests including specific questions about care, such as “Was there ever a time when things didn’t go so well? How often did you get confusing information?”

No one knows how many hospices currently benchmark, but 800 of NHPCO’s members (out of 3000) use its benchmarking service and another 100 participate in Perforum’s Peer Forum. (Home Health Line, 2/24)

NEW CAREGIVER INITIATIVE LAUNCHED

Johnson & Johnson Consumer Products Company has launched The Caregiver Initiative, a national campaign “designed to call attention to the vital role that family caregivers now play, to help them maintain their own health and well-being while they care for others, and to prepare all Americans to better recognize and accept the responsibilities of caregiving that may well affect them personally as our society ages.” More than 20% of the US population will be 65 or older by 2030 and will be cared for by family caregivers who will provide more services for free than the federal government will in all other settings combined.

The campaign stems from a national survey that found Americans “unprepared to care” for others. The survey also found that “this lack of preparedness could have serious social implications as our baby boomer generation continues to age.” Other results include:

* Twenty-two percent of Americans are now caring, unpaid, for a relative or friend.

* Forty-four percent of those caregivers are men.

* The majority of these caregivers are over age 45.

* This caregiving may go on for decades, with 63% of caregivers now providing care for more than a year, 37% for up to four years and 26% for more than four years.

* Fifty-eight percent of caregivers say they are not well prepared to handle insurance matters.

* Fifty-six percent of caregivers think they are not prepared to help with medications.

Compounding the problem is the fact that Americans are not prepared to be cared for, either.

* Only 40% have living wills or healthcare powers of attorney.

* Thirty-five percent have purchased disability insurance or investigated assisted living situations.

* Only 27% have long-term care insurance.

* Slightly more than one-third have talked to a relative or friend about caring for them in the future.

US Surgeon General, Vice Admiral Dr. Richard H. Carmona, has issued a “prescription” for the family caregivers, aimed at managing the stress they experience. The Caregiver Initiative will work with Carmona, the Administration on Aging and national aging and caregiving organizations to educate people who are actually doing the caring. Carmona’s suggests that caregivers:

* Talk to their own doctors when they are feeling anxious.

* Find, and reach out to, sources of community support.

* Stay healthy and maintain yearly doctor visits and flu shots.

* Be aware of stress and find time for exercise, sleep and eating enough.

* Educate themselves about the loved one’s condition and how it affects them physically and emotionally.

Another feature of The Caregiver Initiative is www.strengthforcaring.com, a repository of “the best information and support developed by leading caregiving experts, professional societies, government agencies, and family caregivers themselves and is designed to help caregivers learn to reduce their own stress while providing all of the information they need to care for their loved ones and themselves.” (PR Newswire US, 2/28)

NIA ENHANCES LONG-DISTANCE CAREGIVING SUPPORT

The National Institute on Aging has published So Far Away: Twenty Questions for Long Distance Caregivers. The resource is available from a main website page at www.nia.nih.gov/HealthInformation/Publications/LongDistanceCaregiving. The questions are available online, as a PDF, or as print copies to be ordered.

Each of the questions -- which cover topics such as how to know when help is needed, how to keep up with a senior’s medical and health care, what are geriatric care managers and how to find them -- has a page of its own, and suggestions for what can be done to solve that particular problem. In addition, a resource page has links to other resources, such as the Administration on Aging, the Alzheimer’s Association, the Partnership for Prescription Assistance, the National Center on Elder Abuse, National Family Caregivers Association and others. (NIA Website)

RESEARCH AND RESOURCE NOTES

* The Pittsburgh Post-Gazette’s “NextSteps” column has articles of interest to senior citizens, including topics such as long-term healthcare decisions, hospice, financial planning, whether joint ownership of a home is in the spouse’s best interest, therapy caps and more. Search on “NextSteps” (without the quotes, no space between) at www.post-gazette.com

* Marcia Meldrum, of the UCLA Pain Study Group, reviews The Modern Art of Dying: A History of Euthanasia in the United States, by Shai J. Lavi, in the current JAMA. Meldrum calls the book “very well-researched and elegantly written” but says that it “succeeds less as a history than a historically based meditation on the meaning of death and the physician’s relationship to the dying patient.” The book is “thought-provoking and worthwhile reading for physicians, nurses, ethicists, and patients alike.” (JAMA, 2006;295(9):1070-71)

PUBLIC POLICY NOTES

The Washington State Legislature passed a bill establishing a database of residents’ health declarations – powers of attorney, living wills, doctors’ orders for emergency treatment -- which will be available to physicians and emergency care personnel. The Department of Health will establish and run a website to access the database, which is expected to be up by the end of this year. (Seattle Times, 3/4)

* Fourteen healthcare and nursing organizations encourage congressional leaders to fund nursing workforce development programs in the 2007 budget. The groups, which include AHA and the American Organization of Nurse Executives, say that current funding levels do not meet the growing need for nurses, which is projected by the Department of Labor to increase 29% from 2004 to 2014. (AHA News Now, 3/1)

* Hospices could find themselves in difficulty if CMS surveyors “take a hard line with new hospice admission requirements.” To decide on terminal illness certification, hospice medical directors “must consider the patient’s terminal illness diagnosis, other health conditions and ‘current clinically relevant information supporting all diagnoses.’” Attorney Deborah Randall warns, “How surveyors implement this requirement may be another story.” If the emphasis on “information in hand prior to certification” is interpreted by surveyors to mean that medical directors must see written documentation before admission, hospice admissions may be delayed. (Eli’s Home Care Week, 2/13)

OTHER NOTES

* Karen Ward, a nurse with licenses in Florida and Ohio, differentiates between euthanasia and assisted suicide in the North Country Gazette. The article is online at www.northcountrygazette.com. Ward cites a number of organizations and their definitions of the relevant terms, but, in the end, says that the definitions are irrelevant since they “all define the same basic acts.” Ward concludes by saying, “In spite of media portrayals and reports, legislative comments and votes, and unlawful judicial rulings, medical professionals and organizations as a majority voice do not support or approve of assisted suicide. So we must ask this question, why are so many states in this country attempting to pass assisted suicide laws?” (North Country Gazette, 3/1)

* In a recent article, the Wilmington, Delaware, News Journal featured profiles of the men who serve as professionals at Compassionate Care Hospice. Though there are 11 men working there, they’re outnumbered by the women six to one. One of the men joked that he “needed a sex change operation to fit in” there. Their jobs ranged from medical director to certified nursing assistant and many of them describe their work as a calling or a mission. (The News Journal, 2/23)

* Dr. Miles J. Edwards, physician and teacher at Oregon Health & Science University, is a hospice patient with advanced pancreatic cancer but still keeps learning and teaching from his bed at home. Edwards, like the late Elisabeth Kubler-Ross, believes that “people live their lives more fully when they’re aware of their mortality.” OHSU will raise $2.5 million to endow a professorship in his name, specializing in teaching comfort care at life’s end. (The Sunday Oregonian, 2/26)

* NHPCO is encouraging all persons to wear white ribbons in March, especially on the anniversary of Terri Schiavo’s death on the 31st, as reminders that all of us should take time to plan for end-of-life issues. (NHPCO NewsBriefs, 3/2)

* The National Alliance for Caregiving and The MetLife Foundation have announced a new national family caregiving awards program. The deadline for submissions is May 15 and the categories include Caregiver Education, Technology, and Caregiver Support. See www.asaging.org/asav2/caregiver/index.cfm?CFID=12858085&CFTOKEN=19061637 for more details. (Caregiver Awards Website)

* The National Quality Forum and the National Committee for Quality Health Care (NCQHC) are merging to enhance key programs of each and to pursue “strategic alliances with other organizations … to bring more alignment and coordination to the quality movement.” Janet Corrigan, who has been the president and CEO of NCQHC, will lead the new organization, which will be called the National Quality Forum. (NCQHC Website, 2/28)

* Three main “suicide organizations” in Switzerland keep track of the legal prescriptions of barbiturates given for the purpose of the patient’s suicide. By their figures, more than 2,000 people in the last 10 years have gotten such prescriptions. Assisted suicides are legal if the agencies that arrange them do so for “honorable reasons” and without profit. Ludwig Minelli, founder of Dignitas, a Zurich-based group, says, “What we do is no secret; we’re proud of our work. … Our purpose is to fight for the freedom of people to end their lives when their lives become unendurable.” (The Boston Globe, 2/26)

* On March 2, “Dear Abby,” widely syndicated in the nation’s newspapers, printed a letter and a response encouraging people with terminal illnesses to consider hospice. Abby recommended that people contact Hospice Net at www.hospicenet.org, Hospice Foundation of America at www.hospicefoundation.org, or NHPCO’s Caring Connections at www.caringinfo.org. (Dear Abby Website, 3/2)

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.