Hospice eNews
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What
the Media Said about End-of-Life Care This Week
Week of March 21, 2005
…a service of
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HOSPICES &
NURSING HOMES SHOULD RECOGNIZE EXPERTISE
Polly Rehnwall, a hospice consultant, calls
nursing homes long-term care specialists and hospices end-of-life
specialists. In “
Mark Hammond, medical director of Akron’s AseraCare Hospice, says, “Hospice is a vital component of the nursing home when it is performed as a coordinated effort.” The article says that hospice is particularly important because of the lack of expertise on the part of nursing home staffs in managing end-of-life care. Debra Sullivan (see HNN, 10/19/2004), a healthcare trainer, says, “I see many CNAs and nurses come into long-term care facilities who lack the experience and training regarding death and dying, and some who have never witnessed a death. They feel as I have felt – fearful, anxious, and helpless.”
Mickey Gerhard, a regional professional services manager for AseraCare, says his organization uses templates for each facility to manage the important small details that foster good relationships – where to park, the codes for the doors, locations of the phones and to whom the hospice team member reports. Close coordination is especially important because each agency is a “separate, highly regulated [entity], and must understand the potential impact on each other of even the smallest action.”
Referrals to hospice can be difficult for both nursing home staff and families, since it may signal that the patient has reached the end of life. Rehnwall suggests bringing hospice into the care planning process before the patient is admitted into hospice. The hospice can initiate conversations with the family, relieving the nursing home of the burden. She suggests using “automatic triggers” as signals for bringing hospice into the care planning process – the patient moves to a higher level of care or declines significantly, the family expresses concerns about changes in the patient or the patient’s level of agitation has increased in an upsetting fashion.
In another article in the same issue of Nursing Homes, “Delivering Comfort and
Dignity,” the authors examine the role of hospice in pain management in nursing
homes. The admission of a patient into hospice shifts the focus of pain
management from curative to palliative, which “may be out of the comfort zone
for caregivers.” Phyllis Grauer,
president of Palliative Care Consulting Group in
One point of misunderstanding about pain management is its purpose in hospice care. “Sometimes we numb ourselves with medication rather than dealing with emotional, spiritual and psychological issues,” Grauer says. “In hospice, we try not to let this happen, we want to make the patient comfortable enough so that she can work through whatever she needs to deal with, supported by the hospice team.” Dr. Alan Avery, national medical advisor of AseraCare, says, “Hospice pain management is a coordinated effort, including emotional, mental, spiritual and physical pain. Those are all components of pain… That is why we look at depression, anxiety, and unresolved family issues in addition to the patient’s disease process.”
The authors say that long-term care facilities can learn to provide better care for long-term patients with the help of hospice expertise. The article cites an NHPCO survey that found that families’ favorable rating of symptom management in nursing homes was 64% for those without hospice care and 90% for those receiving hospice. Grauer is quoted as saying that in the future, “many long-term care patients are going to be palliative patients. If the staff can get a feel for what good comfort care is, they can provide their nonhospice patients with good symptom management.” (Nursing Homes, 2005;54(2):S3, S6)
ARTICLES
EXAMINE LATE REFERRALS TO HOSPICE
Two online articles examine the problems of late referrals to hospice. Dierdre Lawe, of Vitas Innovative Hospice Care, writing in sister publications Chicago Hospital News and South Florida Hospital News, says that the recent spate of late-admissions to hospice and short-stay patients are an “epidemic.” Hospices “have been forced to modify team operations to emphasize emergency response, crisis management and hurried attempts to maximize quality of life in the few precious days before the patient dies. That crisis-management approach is in sharp contrast to the hospice ideal of building relationships, controlling and managing distressing symptoms such as pain, encouraging meaningful emotional closure for significant relationships, and facilitating a peaceful, self-determined dying experience for the patient and grief support for his or her loved ones.”
Lawe cites as one of the problems the familiar perception that hospice is a “death sentence.” She says, however, that no evidence supports the fact that hospice shortens lives “and, in fact, the opposite may be true.” Additionally, CMS has told physicians worried about determining a six-month prognosis that they may be “worrying excessively” about that requirement.
When late referrals are made, all other treatments may have been tried and “the burden of symptoms from the illness and the side effects of aggressive treatment likely have multiplied to such a point that everything seems to be going wrong at once, both in the patient’s physical condition and in family dynamics, emotions and the spiritual realm.” Discontinuities of care are thus introduced at “a most stressful time,” denying patient and hospice staff the opportunity of developing a trust relationship. Unaddressed concerns about the details of dying may suddenly need to be attended to, raising familial fears and anxieties.
Lawe says that “the ultimate frustration of late referrals lies in trying to manage a hospice benefit that works well once patients are enrolled but that presents barriers to access and optimal utilization.” She sees as a possible answer the recently funded option of palliative care consults, since “many hospices are working with local hospitals to implement this change to the benefit of patients and providers alike.”
An article in the Houston Business Journal (HBJ) presents a broader look at hospice and the kind of care it provides. Jim Monahan, president and CEO of Houston Hospice, agrees that late referrals are a problem and says that lack of trained physicians is a problem. M. D. Anderson Cancer Center, in Houston, hopes its Palliative Care and Rehabilitation Medicine program will increase that population, with four new palliative care physicians, 12-14 oncology students and numerous visitors in the program each year.
Dr. Eduardo Bruera, professor at M. D. Anderson, says, “We are aware that we do have a large number of people who die in institutions. The combination of more community awareness and demand and awareness by leaders of innovative institutions has led to the establishment of palliative care programs. There is no doubt there is a permanent change in how people are seeing end-of-life care.”
See www.chicagohospitalnews.com/current/default.asp?page=2&articleID=617
for the Chicago Hospital News article.
For the HBJ article, go to houston.bizjournals.com and search
on “hospice” without the quotes. HBJ requires a one-time, free
registration. (
MEDICAID &
PUBLIC POLICY NOTES
* A USA Today article, focused on the
difficulties of reforming Social Security and Medicare, quotes Alan Greenspan
as saying that Medicare “is several multiples more difficult than is Social
Security.” One senator says, “Social
Security is solvable… I just don’t know how to do Medicare.” The article is online at www.usatoday.com/news/washington/2005-03-16-medicare-riddle_x.htm. (
*
*
PAS &
END-OF-LIFE NOTES
* ABC News is working on a project about living wills and how families handle end-of-life decisions. ABC has also set up a public forum on end-of-life issues at forums.go.com/abcnews/Politics/forum?start=0&forumID=73&byThread=true. (ABC News, 3/16; ABC Website)
* Even a
living will and a healthcare proxy can’t guarantee that a person’s wishes on
dying will be honored. Susan
Ponder-Stansel, president of Community Hospice of Northeast Florida, is an
advocate for good end-of-life planning.
But when her grandmother, who had made all the right preparations, had a
cardiac arrest when a caregiver was bathing her, emergency services were called
because the caregiver didn’t know there was an advance directive. The woman died hours later at a hospital,
after futile attempts to resuscitate her.
(
* An
article in the Philadelphia Inquirer
cites Ann Jackson, executive director of the
* Sun
Hudson, the infant at the center of a dispute between
* Massachusetts
General Hospital (MGH) and Carol Carvitt, daughter and healthcare proxy for ALS
patient Barbara Howe, have agreed to withdraw Howe’s life support by June 30. The hospital has wanted to discontinue
support for more than two years, saying that Howe was in pain, but Carvitt
disagreed. Last year, a judge refused
MGH’s request to remove Carvitt as Howe’s healthcare proxy, but directed
Carvitt to change her focus from “carrying out her mother’s wishes to acting in
her best interest.” (
* Congress passed a bill early Monday, immediately signed by President Bush, which forced Terri Schiavo’s case into federal court. US District Judge James Whittemore held a two-hour hearing on Monday afternoon, but gave no indication when he would rule on whether Schiavo’s feeding tube should be reinserted. (AP, 3/21)
* The
New York Times published an article on Sunday about the process of dying
when a feeding tube is removed.
“Once food and water stop, death usually comes in about two weeks, and
is caused by effects of dehydration, not the loss of nutrition,” said Dr. Sean
Morrison, a professor of geriatrics and palliative care at Mount Sinai School
of Medicine in
OTHER NOTES
* A presentation on major depression, adjustment disorders and posttraumatic stress disorder in terminal cancer patients, given last fall at the annual meeting of the Academy of Psychosomatic Medicine, reported that “lower performance status, concern about being a burden to others, and lower satisfaction with social support were significantly associated with adjustment disorder and major depression” at the time patients registered with a palliative care unit. The abstract is online at psy.psychiatryonline.org/cgi/content/full/46/2/153. (Psychosomatics 46:153-186, April 2005)
* While seniors over age 65 lag far behind younger adults in Internet use and searches for online medical information, their numbers are growing. A JAMA article contains demographic information about adults using online services for health purposes and says that seniors could benefit from better web-page design. One good example cited is www.nihseniorhealth.com, launched last fall. (JAMA, 2005;293:1310-1312)
*
* “Dealing With Conflict in Caring for the Seriously Ill” is an article in the current JAMA issue. The authors argue that “conflict handled well can be productive, and the clarity that results can lead to clearer decision making and greater family, patient and clinician satisfaction. The article contains a lengthy case study, tables of common examples of conflict, behaviors to avoid in dealing with conflict, and useful communication tools for addressing conflict and a step-wise approach to addressing conflict. CME credit is available. (JAMA, 2005;293:1374-1381)
* Angels’ Place is a New Orleans-area non-profit agency that provides respite and end-of-life care for families of children with life-threatening illnesses. The founder, Anita Gilford, is grateful for a recent “Those Who Dared to Care About Kids” award from the National Council of Jewish Women, but says she won’t celebrate until she’s raised enough money to build a freestanding home for seriously and terminally ill children. (Times Picayune, 3/14)
* New
research, originally published in the Archives
of Internal Medicine, shows that treatment withheld or withdrawn at the end
of life varies widely among six European countries: