Hospice and Caregiving Blog

Medicare to Launch New Caregiver Website

noreply@blogger.com (Krista Renenger) — Tue, 16 Sep 2008 19:06:00 +0000

The Centers for Medicare & Medicaid will launch a new website for caregivers on Wednesday, September 18, called Ask Medicare. You can sign up here for a live webcast at 12:00pm ET to learn more. (Thanks to the Minding Your Elders blog for sharing information about the new site.)

Hospital-Based Palliative Care on the Rise in California

noreply@blogger.com (Krista Renenger) — Tue, 16 Sep 2008 19:04:00 +0000

A brief item from Friday's San Jose Business Journal about the rise in hospital-based palliative care:

Hospital-based palliate care programs, which have a goal of helping patients with serious diseases live more comfortably, are quickly growing in popularity, according to a report released Thursday by the Oakland-based California HealthCare Foundation.

More than 90 percent of California’s 111 programs surveyed by the foundation were started since 2000, with 64 percent started since 2004.

Medicare Hospice Protection Act of 2008

noreply@blogger.com (Krista Renenger) — Tue, 16 Sep 2008 19:02:00 +0000

Ten members of Congress have introduced the Medicare Hospice Protection Act of 2008 which would delay a new Centers for Medicare & Medicaid Services (CMS) rule from going into effect for one year. The National Hospice and Palliative Care Organization (NHPCO) and their advocacy arm, The Alliance for Care at the End of Life, have argued the rule change would effectively cut hospice Medicare reimbursement rates. See more information on NHPCO's website.

Discussing Racial and Ethnic Differences in Health Care

noreply@blogger.com (Krista Renenger) — Fri, 12 Sep 2008 16:57:00 +0000

A few items appeared this week touching on racial and ethnic differences in health care. We are focused on diversity at HFA, as we prepare for our 2009 teleconference on Diversity and End-of-Life Care.

First, the New Health Dialog Blog discussed a study that appeared in the September 10 issue of the Journal of the American Medical Association, "Student Body Racial and Ethnic Composition and Diversity-Related Outcomes in US Medical Schools". The authors conclude "attending medical schools with high levels of racial and ethnic diversity may better prepare white medical students to care for minority patients." Analyzing over 20,000 web-based surveys from students graduated from 118 medical schools, the authors commented:

. . . white students attending more racially diverse medical schools rated themselves as better prepared than students at less diverse schools to care for racial and ethnic minority patients and had stronger attitudes about inadequate access to health care. . . . The associations of student body diversity appeared to be mediated by more positive interaction and perspective sharing among individuals from different backgrounds within medical schools. The association of student body diversity with white students' self-rated cultural competence was only observed when students perceived a more positive climate for interracial interaction and exchange of diverse perspectives.

Second, Pallimed reviewed a recent study from the Journal of Clinical Oncology on the racial and ethnic differences in advance care planning.

They found that Black and Hispanic patients were less likely to have an advance directive than white patients (and in this case much less likely: 80% vs 50%), were more religious, and were more likely to endorse life-prolonging treatment wishes even if had only a few days to live. Dishearteningly, only 30% of patients had had any sort of discussion with their physicians regarding end of life care - this finding did not differ between groups. Fewer Black and Hispanic patients acknowledged they were terminally ill compared to white patients, however such acknowledgment was associated with increased advance care planning in all groups. The really interesting finding is that differences in advance care planning persisted even after adjusting for demographic factors (age, education level, etc.), terminal illness awareness, religiosity, and preference for life-prolonging therapy when dying. Suggesting, that is, that these differences are either deeply cultural (and thus not as impacted by demographics, illness understanding, etc.) and/or related to how/the frequency with which clinicians bring up advance care planning with patients from different ethnic groups.

And last, the Oregon Center for Applied Science (ORCAS) is conducting surveys for a study funded by the National Institutes of Health. It is seeking people who identify as a racial or ethnic minority to receive $275 for using a new Family Caregiving Support program and completing four online surveys.
Eligible participants must:

* Care for an aging relative or friend with advanced illness or in need of assistance with daily tasks like bathing, eating, dressing, walking, etc.

* Have an email address and access to a computer with a high-speed Internet connection.

* Read and understand English.

Only one person per household may participate in this study.

Visit the survey site here.

More on Falls and the Elderly

noreply@blogger.com (Krista Renenger) — Fri, 12 Sep 2008 16:52:00 +0000

Learning more about fall prevention is key component to caring for an aging family member and supporting their quality of life.

First, Jane Gross at the New Old Age Blog, discusses the serious risk of falls for the elderly.

. . .Each year, nearly one-third of older adults experience a fall, and 20 to 30 percent of them wind up with moderate to severe injuries, ranging from broken teeth to broken hips. In 2005, the C.D.C. reports, 1.8 million elderly patients were treated in emergency rooms for non-fatal falls, and 15,800 died of their injuries.

Some 20 to 40 percent of those suffering a hip fracture will die within a year, researchers estimate, but even lesser injuries can precipitate a cascade of medical problems, the onset of severe disability, and the end of independent living and the beginning of round-the clock care.

She notes that there are many efforts underway to study prevention programs.

Meanwhile, Sarah Henry at Caring Currents wrote a post yesterday about the importance of geriatric care. She refers to a New Yorker article about a geriatrician who institutes a number of measures to prevent falls for his patient, after noting her high risk for a fall.

Palliative Care Provides Savings for Hospitals

noreply@blogger.com (Krista Renenger) — Fri, 12 Sep 2008 16:48:00 +0000

A recent study reported in the Achives of Internal Medicine said that hospitals using palliative care teams save an average of $300 per patient per day. This post from the New Health Dialog Blog provided excellent coverage of the study:

The paper in the Sept. 8th edition of the Archives of Internal Medicine by Dr. Sean Morrison of the Mt Sinai Hospital and the Center to Advance Palliative Care and colleagues matched palliative care patients to "usual care" patients. The palliative care patients who were discharged alive had an adjusted net savings of $1,696 in direct costs per admission, or $279 per day. Amongst those who died, the adjusted net savings were higher, $4,908 per admission, and $374 per day. The savings came from reductions in laboratory work, intensive care cost (and for the patients who died, pharmaceuticals.) The team checked to make sure that the savings could be attributed to palliative care, not to a clinical course of action already determined before the palliative care team got involved with the case.

Gorilla Mother, Human Grief

noreply@blogger.com (Hospice Foundation of America) — Tue, 09 Sep 2008 17:40:00 +0000

Elizabeth Uppman

In a German zoo, a gorilla named Gana is having trouble letting go.

Gana’s baby, Claudio, died some weeks ago, presumably of a heart defect. I say “presumably” because nobody knows for sure what he died of—Gana won’t relinquish his body to the zookeepers. She carries it around with her, strokes his hair, shakes him slightly as if to wake him.

Gana made the news because she appears to be grieving, and because grieving is supposed to be a human activity. Zoo visitors watch her and weep.

Perhaps they see in her an echo of their own losses, of times when they, too, have delayed their understanding of certain brutal facts.

For weeks after my 3-year-old son died, I woke up frantic every the morning because I didn’t know who was taking care of him. I knew Gabriel was gone; I knew I wouldn’t find him in his bed by the window. But I couldn’t fix in my mind the understanding of what gone meant. The thought that he had disappeared—vanished—evaporated, like a splash of water on a hot sidewalk—was too big for me.

So I unconsciously defined “gone” as “somewhere else.” But where? And with whom? Were they nice? Did they have all his medicines? Did they rub his head when they gave him his bath? It always took me a few groggy minutes to remember that gone meant dead, and that dead meant Gabriel no longer needed anybody to take care of him.

Over time, researchers say, gorilla mothers like Gana become less and less attached to the bodies of their babies, until finally they abandon them. We can only guess what’s going on in their heads, but it looks like a slow realization: the baby is never going to wake up again. Something like that happened for me, too, over a period of months and years. The true meaning of gone sunk in deeper and deeper, until one day I woke up, not frantic, but knowing.

It’s a good thing, of course, to rejoin the world where people think and act clearly and deliberately. Still, once in awhile I miss those days, when in the confused moments between sleep and waking I could still believe that Gabriel was alive.

Elizabeth Uppman

Medicare Announces Webcast for Caregivers

noreply@blogger.com (Krista Renenger) — Mon, 08 Sep 2008 18:24:00 +0000

The Centers for Medicare & Medicaid (CMS) announced a webcast on "Connecting Caregivers to Medicare Resources." The webcast will air next Thursday, September 18, 2008 from 12–1pm ET. Caregivers will be able to:

Learn about new online resources for caregivers

Post questions to CMS Acting Administrator Kerry Weems and a panel of experts online

For more information or to register, see this site.

HFA's Book Living With Grief: Alzheimer's Disease Gets Noticed

noreply@blogger.com (Krista Renenger) — Mon, 08 Sep 2008 18:23:00 +0000

The psychiatric blog, Dr. Jeff's and Dr. Tanya's Blog, recently featured a post "Eight great books on understanding Alzheimer's." HFA's 2004 book Living With Grief: Alzheimer's Disease topped the list. View the table of contents and then order the book here.

Lawsuit Filed to Stop New CMS Rule on Hospice Reimbursement Rates

noreply@blogger.com (Krista Renenger) — Mon, 08 Sep 2008 18:21:00 +0000

On Friday, September 5, the National Hospice and Palliative Care Organization (NHPCO) filed a lawsuit asking for an immediate injunction to prevent a Centers for Medicare & Medicaid Services'(CMS)rule that changes Medicare reimbursement rates for hospice.

View the latest proposed wage index for FY2009 here.
View NHPCO's response to the proposed rule here.

CMS Holding Next Home Health, Hospice and Durable Medical Equipment Open Door Forum

noreply@blogger.com (Krista Renenger) — Fri, 05 Sep 2008 18:29:00 +0000

From the Medicare Update blog:

The Centers for Medicare & Medicaid Services (CMS) will hold the next Home Health, Hospice & DME Open Door Forum at 2:00 p.m. (ET) on September 17, 2008.

There are 2 ways to participate in the Open Door Forum. To participate by telephone, one must dial 1-800-837-1935 and reference conference ID 58369938. To participate in person, RSVP and security clearance is required. One must RSVP by 2:00 p.m. (ET) on September 15, 2008 to HOMEHEALTH_HOSPICE_DMEODF-L@cms.hhs.gov, and include your name, organization, phone number, and the words “Home Health” in the subject line. The Open Door Forum will take place at the Hubert H. Humphrey Building, 200 Independence Avenue S.W., Washington, D.C.

Beginning 2 hours after the Open Door Forum, CMS will also make an audio recording available. To access the audio recording, one must dial 1-800-642-1687 and enter the conference ID. The recording will expire after 3 business days.

Aging Population Creates Space for More Eldercare Services

noreply@blogger.com (Krista Renenger) — Fri, 05 Sep 2008 18:23:00 +0000

Two articles from newspapers in Minneapolis-St. Paul and Dallas discussed different eldercare services this week. Taken together they highlight how the growth in the elderly population in the United States is creating changes in how eldercare services are being offered, and how new business models are being created to perform these services.

The first article, from The Dallas Morning News, discusses home care agencies and in particular, the growth of franchises offering home care services.

Some 11,000 licensed home-care businesses served 7.6 million people last year, according to the American Association of Homes and Services for the Aging. And in-home aides are projected to be the second fastest-growing job over the next decade – the government forecasts a 50 percent increase, from 767,000 to 1.2 million jobs.

Though "mom and pop" businesses have dominated home care, entrepreneurs have propelled the recent growth by opening franchises to capitalize on the expected doubling of the older population by 2030.

Next, this article from the Star-Tribune focused on a company started by four nurses that provides eldercare assessments as well as managing ongoing care.

Two partners spend two hours or more on an assessment, Buelow said, speaking both to the senior and to family members. They spend 10 to 15 hours writing a report, which details a family's options for meeting a parent's needs.

The partners will conduct family meetings, sometimes including out-of-state siblings joining in on cellular phones, to go over the assessment and present the options . . .

Profile of Four Hospice Social Workers

noreply@blogger.com (Krista Renenger) — Thu, 04 Sep 2008 16:37:00 +0000

This nice article from a local paper, The Phoenix (PA) profiles four hospice social workers and describes how their professional and personal backgrounds steered them to hospice work.

Jackie McIntyre, Peggy Graf, Jeniffer Flamish and Vickilyn Zazo-Nagy understand clearly that death should be seen as a part of life. They are all social workers at Life Choice Hospice and, while none of them entered this field expecting to work in the specialty of hospice, they all believe they have found their ideal profession and see it as an honor to be with patients at the end of their lives.

Hospice Therapy Dogs Visit Patients

noreply@blogger.com (Krista Renenger) — Thu, 04 Sep 2008 16:33:00 +0000

This article from The Bolingbrook Sun describes the role of hospice therapy dogs in calming patients and providing a friendly vistor.

Patty Kaplan, a registered nurse, founded Paws 4 Therapy Inc. with the hopes that the program could assist the patients in acute care. She is the director of the program at Edward.

By 2007, the hospital had one of the largest animal-assisted therapy programs in the country. More than 100 dog and handler teams visit patients daily at bedside.

"I think the biggest thing is that it serves as a diversion from their illness," she said. "It's calming, and for those patients that are lonely it may be the only visitors they get."

"It's a piece of home."

Alzheimer's Foundation of America to Display 'Quilt to Remember' in Washington, DC This Week

noreply@blogger.com (Krista Renenger) — Thu, 04 Sep 2008 16:29:00 +0000

The AFA Quilt to Remember will be displayed today through September 6 at the AARP Life at 50+ National Event and Expo, Washington Convention Center, Washington, DC.

AFA announced the AFA Quilt to Remember project in late 2005, and the collection now includes more than 100 panels. By coincidence, the 100th quilt was received just in time for Mother’s Day and pays tribute to a mom, Virginia Loepker of Jasper, IN.; intricately sewn by Phyllis Boor of Elkhart, IN, the panel features a three-dimensional yellow sunflower to denote her mom’s love for flowers.

The goals of the heartfelt initiative include educating the public about the disease and “speaking for those who can no longer speak for themselves,” Hall said.

Not Enough Facilities to Handle Dementia Patients in Maine

noreply@blogger.com (Krista Renenger) — Tue, 02 Sep 2008 19:37:00 +0000

This article from the Bangor Daily News addresses the need for more facilities to handle dementia patients in the state of Maine.

Rick Erb, executive director of the Maine Health Care Association, which represents nursing homes in Maine, confirmed in a recent interview that the shortage of places for Mainers with difficult behavior has been a serious problem for several years and is likely to get worse as the population ages. Only three Maine nursing homes offer specialized long-term psychiatric units, he said, with higher levels of trained staff to handle aggressive patients and locked units to prevent residents from wandering. None of the three is north of Waterville or west of Gorham.

Erb said it’s up to the state to fund more of these high-level programs for Mainers with dementia.

“But right now, there is no movement toward creating more special units to deal with these psychological issues,” he said.

According to Diana Scully, director of the Office of Elder Services at the Maine Department of Health and Human Services, the state is well aware of the problem.

“There are long waiting lists” for admission to the three nursing homes with specialized psychiatric units, she said in a recent interview. “It’s hard for the existing facilities to address the need.”

But looking ahead, she said, state officials have yet to tackle the problem of ensuring that appropriate — and expensive — nursing home care is available for Maine baby boomers who develop difficult behavior related to dementia. Instead, the current focus is on increasing space for aging individuals in less-restrictive settings such as assisted living programs and boarding homes, as well as developing community-based support for families caring for their elderly relatives at home.

Scully acknowledged that it is not enough. “There will be more Alzheimer’s and other age-related dementias. We know we are going to need more options as people age,” she said.

Until those options are developed, waiting lists will continue to grow and hospitals will bear the burden.

Round-Up: Preventing Falls, Expressing Condolences, Respite Care, and More to Come

noreply@blogger.com (Krista Renenger) — Fri, 29 Aug 2008 19:27:00 +0000

I’m still catching from a lovely August vacation, but wanting to share some articles that appeared in The New York Times while I was gone. Here Ohn Mar talks about a study examining ways to reduce falls among the elderly.

Falls among the elderly, a common source of injuries, have largely been considered inevitable. But a recent large-scale study shows that a combination of adjusting treatment, assessing risk and educating patients can substantially reduce serious falls.

The study, by Dr. Mary E. Tinetti and her colleagues at the Yale School of Medicine, compared two similar regions of Connecticut. For four years in the experimental region, the researchers asked clinicians to assess their patients’ risk of falls and to consider medication reduction and other prevention measures like strength training, vision adjustment and blood pressure treatment. The rate of serious falls by the elderly in that region was 11 percent less than that in the region that followed normal care.

That lower rate of falls translated to 1,800 fewer emergency visits by the elderly, the researchers said, saving more than $21 million in health care costs. The study was published July 17 in The New England Journal of Medicine.

In this essay, the vice chairman of medicine at Memorial Sloan-Kettering Cancer Center, Kent Sepkowitz, M.D., writes about doctors not expressing condolences.

Not long ago, soon after we put our pet dog to sleep, I received a handwritten note from our veterinarian expressing her condolences. The letter was not brief — she described my children’s fondness for little Rudy and how caring they were as his condition worsened. It was thoughtful and personalized, not something she had simply dashed off.

In contrast, during my 25 years of caring for humans I have written only a handful of similar notes to families after a loved one’s death.

Here, John Leland writes about respite care and the reluctance of caregivers to use the service for their ailing relatives.

In an aging population, nine million people take care of someone with Alzheimer’s or another form of dementia, and for many it is a responsibility without a break.

But as health professionals and the federal government have recognized the strain on these family members — including higher rates of depression, hypertension, diabetes, sleep disorder, heart disease and death — a growing number of facilities now offer short-term respite stays. In its simplest form, respite might be a home aide a few hours a week or use of an adult day care service. To caregivers at the end of their rope, real respite means a short time away — what for anyone else would be called a vacation.

Most caregivers do not take respite vacations because they see them as an admission of failure, or they worry that something will happen while they are away. A paradox of caring for an elderly relative is that the burden is so big, many feel they cannot share it.

Paula Spencer, a senior editor Caring.com, wrote about NYT’s respite care piece on their Caring Currents blog.

Every caregiver should know the key points:

1. Respite can save your health and your marriage.
2. Overnight options include in-home care and short-stay arrangements in nursing homes, assisted-living facilities, and "camps," such as one run by the Family Caregiver Alliance.
3. Using vacation respite isn't bad for the loved one with dementia.
4. Taking a vacation isn't a sign that you're a lousy caregiver.

That last point probably belongs first, and in all caps. There's such a pervasive misconception, deep in the psyche, that it isn't "right" to leave a loved one who needs care while you go off on holiday. "Most caregivers do not take respite vacations because they see them as an admission of failure or they worry something will happen while they are away," says the Times piece.

Examining Caregiving Among Florida's Minority Populations

noreply@blogger.com (Krista Renenger) — Mon, 25 Aug 2008 18:55:00 +0000

An article in Washington's The Olympian newspaper discusses a two-year project run by the University of Miami's Center on Aging to evaluate the strain of caregiving on 200 minority caregivers in southern Florida. The project will feature an emphasis on using technology to connect caregivers, using video phones.

"People don't plan on becoming caregivers," said Dr. Sara Czaja, co-director of the center and principal investigator on the project. "It's something that just happens to them. It's not one size fits all. Culturally, we have different ideas about family, about caregiving - maybe technology can play a big role."

MAKING A CONNECTION

Part of the program involves connecting caregivers to others through video phones installed in their home. Through their video monitors, they can reach out to other caregivers, social workers or medical experts and watch pre-recorded videos about caregiving and Alzheimer's.

Questioning Cancer Therapy

noreply@blogger.com (Krista Renenger) — Mon, 25 Aug 2008 18:48:00 +0000

The New York Times' Jane E. Brody addresses the tough decisions involved in choosing a treatment plan for cancer in this article last week.

Specialists in ovarian cancer from University Hospitals Case Medical Center in Cleveland described a study of 113 patients with ovarian cancer in the journal Cancer in March.

“Patients with a shorter survival time,” they found, “had a trend toward increased chemotherapy during their last three months of life and had increased overall aggressiveness of care [but] did not have improvement in survival.”

The team concluded, “Our findings suggest that in the presence of rapidly progressive disease, aggressive care measures like new chemotherapy regimens within the last month of life and the administration of chemotherapy within the last two weeks of life are not associated with a survival benefit.”

With aggressive therapy, the majority of the women in the study who died did so without the benefit of hospice.

Dr. Thomas J. Smith, an oncologist and palliative care specialist at the Massey Cancer Center of Virginia Commonwealth University, said in an interview that patients needed to understand the tradeoffs of treatment.

“Palliative chemotherapy, which is what most oncologists do, is meant to shrink cancer and improve the quality and quantity of life for as long as possible without making patients too sick in the bargain,” he said.

The Cleveland team pointed out that the treatment goal can, and should, change. “There is a difference between palliative chemotherapy administered early in the trajectory of disease and near the end of life,” the researchers wrote. “The goal of end-of-life care should be to avoid interventions, such as cytotoxic chemotherapy, that are likely to decrease the quality of life while failing to increase survival.”

In fact, those who choose hospice over aggressive treatment often live longer and with less discomfort because the ill effects of chemotherapy can hasten death, Dr. Smith wrote in a review of the role of chemotherapy at the end of life, published in June in The Journal of the American Medical Association.

Some patients are just unwilling to acknowledge that nothing can save them, and want toxic treatment even if it means only one more day of life.

And sometimes patients are reluctant to relinquish treatment because they are terribly afraid of dying, of being alone cut off from care, Dr. Smith said in the interview. Patients may fear, with some justification, that if treatment stops the doctor will abandon them.

It is not only patients and their families who may insist on pursuing active treatment to the bitter end. Sometimes, doctors subtly or overtly encourage it. Oncologists may be reluctant to acknowledge that they can no longer sustain a patient. They may fear destroying a patient’s hope. Or they may be covertly influenced by the fact that their income comes from treatment, not from long discussions with patients and families about why palliative therapy should yield to supportive care.

In a related article, Brody shares a list of questions that patients who are considering palliative chemotherapy should ask their oncologists.

Profiles of Five Women Caregivers

noreply@blogger.com (Krista Renenger) — Mon, 25 Aug 2008 18:43:00 +0000

This piece from the Rockford Woman (IL) magazine features the profiles of five women whose professional careers or personal lives involve caring for the elderly. Debra Adkins is the campus administrator for a facility that operates buildings ranging from independent living to a skilled nursing home on one campus. Teresa Colvin is a caregiver specialist for the Northwestern Illinois Area Agency on Aging. Beverly Bosselman is a certified hospice palliative care nursing assistant. Gloria Dawson is an author who wrote a book about caring for her mother and Shirley G. Sievers is a geriatric consultant and care manager.

NHPCO Urges Congressional Intervention as CMS Finalizes Rate Cuts

noreply@blogger.com (Keith) — Tue, 12 Aug 2008 14:55:00 +0000

The Centers for Medicare & Medicaid Services (CMS) issued its final rule on the hospice wage index for fiscal year 2009. According to the National Hospice and Palliative Care Organization (NHPCO), this regulation will cut hospice reimbursement rates by phasing out the budget neutrality adjustment. The new Medicare reimbursement cuts will be implemented on October 1. NHPCO is encouraging hospice advocates to learn more about what these rates cuts will mean, and to connect with their representatives over the August Congressional Recess to ask them to intervene before October 1.

Online Discussion on Complicated Grief

noreply@blogger.com (Krista Renenger) — Fri, 08 Aug 2008 14:50:00 +0000

Earlier we posted about an article that will appear in the October/November issue of Scientific American Mind about new research into the underpinnings of complicated grief, which is described as when the painful emotions associated with grief are so severe and prolonged they interfere with a person's ability to accept the death and resume their own life. This may occur in 10 to 20 percent of the bereaved.

This past Monday, Washington Post staff writer Rob Stein and UCLA researcher Mary-Frances O'Connor were online to discuss the study.

Munich, Germany: How do you diagnose and discriminate between complicated grief and depression? Also, if a person suffers from complicated grief, is he or she more likely to suffer from depression?

Mary-Frances O'Connor: There are several questions that people have about the difference (and similarity) between complicated grief and depression. They are different, with different symptoms. However, about 1/3 of people with complicated grief also have depression (just like you can have depression and anxiety). In the study that I did, I specifically interviewed the participants to determine if they had depression, and I excluded anyone who did. So the brain activation that I report on is just from complicated grief.

So, what is the difference? Scientific research has shown that in depression there is a sad mood about everything (and it is often felt to be all one's fault), but with complicated grief, the sadness centers just on the deceased (and so does any guilt). In depression, there is also often a loss of interest or pleasure in things, where as with complicated grief, there is still pleasure from thinking about the person who has died. Complicated grief also has intrusive images and thoughts about the deceased that come unexpectedly, which is not the case with depression.

Call For Recognition Of Palliative Care And Pain Treatment As Human Rights

noreply@blogger.com (Krista Renenger) — Fri, 08 Aug 2008 14:46:00 +0000

On Monday, August 4, a Joint Declaration and Statement of Commitment calling for the recognition of palliative care and pain management as human rights was presented at the XVII International AIDS Conference in Mexico City. The International Association for Hospice and Palliative Care and the Worldwide Palliative Care Alliance were among the signers, including representatives of regional organization from Africa, Latin America, Eastern and Western Europe, Asia, and North America.

The seven goals in the Declaration are:

1- Identify, develop and implement strategies for the recognition of palliative care and pain treatment as fundamental human rights.

2- Work with governments and policy makers to adopt the necessary changes in legislation to ensure appropriate care of patients with life-limiting conditions.

3- Work with policy makers and regulators to identify and eliminate regulatory and legal barriers that interfere with the rational use of controlled medications.

4- Advocate for improvements in access to and availability of opioid analgesics (pain relievers) and other medications required for the effective treatment of pain and other symptoms common in palliative care, including special formulations and appropriate medications for children.

5- Advocate for adequate resources to be made available to support the implementation of palliative care and pain treatment services and providers where needed.

6- Advocate for academic institutions, teaching hospital and universities to adopt the necessary practices and changes needed to ensure that palliative care and pain positions, resources, personnel, infrastructures, review boards and systems are created and sustained.

7- Encourage and enlist other international and national palliative care, pain treatment, related organisations, associations, federations and interested parties to join this global campaign for the recognition of palliative care and pain treatment as human rights.

Minorities Not Given As Much Information about Survival Rates for Breast Cancer Treatments

noreply@blogger.com (Krista Renenger) — Wed, 06 Aug 2008 17:29:00 +0000

A study by the University of Michigan Comprehensive Cancer Center, appearing in the August issue of the journal Health Services Research. recently showed that nearly half of women with breast cancer were not aware of their odds of being alive after five years are similar whether they undergo mastectomy or breast conserving surgery. Women who are part of a minority group are even less likely to know this information.

Minority women were also less likely to know about relative survival rates even when researchers considered factors such as the surgeon's experience, the type of hospital, and whether patients reported talking to their surgeon about treatment options.

"These factors traditionally associated with quality care were not associated with informed decision-making or with our knowledge measures. Surgeon volume or treatment setting did not affect whether women had good knowledge of their treatment options after they had been through the process, nor did it really mediate the racial and ethnic differences we found," says study author Sarah Hawley, Ph.D., a research investigator at the U-M Comprehensive Cancer Center.

Interview with a Geriatrician Trying to Revolutionize Nursing Homes

noreply@blogger.com (Krista Renenger) — Wed, 06 Aug 2008 17:23:00 +0000

Caring.com posted an interview with Dr. Bill Thomas, a geriatrician who is working on a way to revamp nursing homes in the U.S. His current project is known as the Green House,

. . .groups of small, cozy homes that offer private bedrooms and baths, and "hearth rooms" with an open kitchen. Residents can eat when they want, sit by the fireplace, and take part in all house decisions. Meals are served around a big table, and some Green Houses bake bread or cookies daily and serve soup from a big tureen on the table to promote the feel (and scents) of home. There are now 41 Green Houses in ten states, but the Robert Wood Johnson Foundation recently provided a $15 million grant to Green Houses and the nonprofit group NCB Capital Impact to build more during the next five years.

Caring.com's features editor, Camille Peri, asks Dr. Thomas about the Green House concept and how it differs from the traditional nursing home facility.

How do Green Houses treat staff differently?

First off, the people who work with the elders in the Green Houses are called shahbazim. The shahbazim -- which comes from a Persian word meaning 'royal falcon' -- are what we call the midwives of elderhood. And here's the key: They work together as a team in a house and they are not part of the nursing department. The nurses are separate. So one thing we've done away with is the nursing assistant idea where, if you can't get a real nurse, you get a nursing assistant. We say that real hands-on care is so important and valuable that it has its own professional standing. And then the nurses, of course, also contribute a huge amount to the well-being of the elders. But the nurses and the shahbazim are partners, not bosses and workers.

Are long-term care residencies really necessary, or would it be better for people to take care of their parents at home?

There are nursing homes all around the world because there are millions and millions of people who need more care than their families can give them. As a geriatrician and a doctor, I have seen people go too far in care giving at home before they sought professional help much more often than I have seen people not go far enough. Many, many more people give up careers, income, job satisfaction, social life, their hobbies --give up so much to care for somebody they love at home. And I've seen that take a real toll on people's personal health and well-being.

So the issue I most often deal with is helping family caregivers realize: You've done more than anybody could ever expect you to do, and now it's time to bring in the professionals. And there's nothing wrong with that -- you've done what you can do. It's time to take the next step. Yet society layers on the guilt, and I don't approve of that.

My message to caregivers is: Don't give yourself over to guilt. The very fact that you're a reader at Caring.com -- that's like angel points in advance! So do the best you can, and when it's time to get more help, don't beat yourself up.