Spotlight on Hospice and End-of-Life Care Discussions in The New York Times

The New York Times featured hospice and end-of-life care this week in two different venues. First, The New Old Age blog published a post Tuesday titled "Avoiding the Call to Hospice." In the post, author Paula Span shares information about what hospice care is and is not.

What if I told you about an organization you could call when your elderly parent became so seriously ill that it appeared unlikely she’d recover?

What if I told you that this organization would send well trained nurses to see your parent, aides to lend a hand with daily care, a social worker to help the family grapple with the emotional difficulties? That these folks would deliver equipment you might need — a hospital bed, say, or wheelchair — and all your parent’s drugs? What if they’d also send a chaplain if you wanted one? And provide a nurse to call 24/7 when you had questions or problems? And volunteers who would stay with your parent while you took a few hours’ break, even if just for a long, quiet

And what if I told you all this would cost you nothing, that Medicare would pay for it all? You’d pick up the phone, right? It’s what caregivers so often yearn for and so seldom can locate: expertise, compassion, help that they can afford.

Now, what if I told you this organization was a hospice?

Yesterday's Doctor and Patient column by Paula Chen, MD discussed the difficulty of end-of-life conversations between a doctor and patient, and also talks about her own recent experience with her mother-in-law's death. She writes about doctor's being unsure if having a conversation about dying is doing more harm than good to the patient.

One particular study came back to me during these last few weeks, a study that attempted to answer just this question. Published last fall in The Journal of the American Medical Association, the study examined how end-of-life care discussions with terminal patients affected their quality of life and that of their caregivers.

Over the course of almost six years, Professor Holly Prigerson, director of the Center for Psycho-oncology and Palliative Care Research at the Dana-Farber Cancer Institute in Boston, and her colleagues interviewed more than 300 terminal patients, asking them if their doctors had ever discussed care at the end of life. After these patients died, the investigators analyzed the type of medical care received prior to death, then interviewed the patients’ caregivers six months later to assess how they were adjusting to their loss.

What Dr. Prigerson and her co-investigators found was that those patients who had had discussions with their physicians were more likely to have better quality of life at the end of their lives. These patients were not more depressed or more worried as a result of these discussions, and they tended to receive less aggressive medical care and earlier hospice referrals. Moreover, their caregivers fared better and suffered from significantly less depression six months after the patient’s death than caregivers whose loved ones had received more aggressive care.

Read the comments to this column here.

Two Journal Articles Focus on Racial/Ethnic Differences at End of Life

A study in the Journal of Clinical Oncology examines the racial and ethnic differences in advance care planning among patients with cancer, including acknowledgment of terminal illness and its impact, religiousness, and treatment preferences.

Key research findings

• Compared with whites, black and Hispanic subjects were less likely to have an advance care plan and acknowledge that they were terminally ill, and more likely to consider themselves very religious and have a preference for life-prolonging care.


• In adjusted analysis, terminal illness acknowledgment, religiousness, and treatment preferences did not explain observed differences by race and ethnicity.


• Future studies should continue the search for factors that might explain differences by race and ethnicity in advance care planning and end-of-life care, such as limited health literacy and distrust of the healthcare system.

Researchers from the University of Pittsburgh showed that when faced with a terminal illness, African-American seniors were two times more likely than whites to say they would want life-prolonging treatments. The study, appearing in the Journal of General Internal Medicine, interviewed and surveyed 2,800 Medicare beneficiaries 65 years and older.

Focus on Pediatric Palliative and Hospice Care

The Philadelphia Inquirer reports that Pennsylvania is working on improving the treatment of terminally ill children in the state. A 190-member task force released a report Wednesday stating that Pennsylvania is not meeting the needs of terminally ill children and their families, and that these families are not learning about all the options regarding end-of-life care.

"Improving the quality of life for dying children in Pennsylvania will require sweeping social changes around the fact that children do die," said Gail Inderwies, founder of Keystone Hospice in Wyndmoor and the task force's cochairwoman, who spoke at a rally in the Capitol yesterday. "We need to develop more humane and holistic supports for families and children when treatment for their disease fails."

Families and child-health advocates who gathered yesterday said they were seeking the changes the task force report recommended: a more strategic and comprehensive approach to care, improved communications among health-care providers, and better education for doctors and other medical professionals.

The Children's Project on Palliative/Hospice Services has released its latest newsletter (PDF) which contains a number of articles describing the experiences of family members when they do not feel prepared for dealing with their child's illness.

Study Shows Lack of Hospice Conversation Between Doctors and Cancer Patients

The May 25 issue of the Archives of Internal Medicine includes a study by researchers at Harvard Medical School of 1,517 patients diagnosed with metastatic lung cancer. Only about half of the patients discussed hospice care with their doctors within four to seven months of their diagnosis.

For some ethnicities and races, the likelihood of a discussion about hospice was even lower. About 49 percent of African-Americans and 43 percent of Hispanics had a conversation with their physicians, the study found, compared with 53 percent of whites and 57 percent of Asians.

The longer a terminally ill patient expected to live, researchers discovered, the less likely the subject was to come up.

"Patients who had unrealistic expectations about how long they had to live were much less likely to talk about hospice with their doctor," said Haiden Huskamp, a Harvard Medical School associate professor of healthcare policy and the study's lead author.

Read coverage from The Boston Globe, on the Harvard Science website, and ScienceDaily.

More Discussion about End-of-Life Care Decisions

Earlier this month a New York Times interview by David Leonhardt with President Obama included a discussion about the president's grandmother and her care at the end of her life. On the WNYC website, host Brian Lehrer discusses the interview with David Leonhardt and Judy Bachrach, who writes for Obit Magazine.

A Name For A Parent Whose Child Has Died

By Karla FC Holloway

In an NPR essay nearly three years ago, I pondered over the lack of a word for parents whose child had died. I remember I said it must be a quiet word, like our grief, but clear in its claim. I recalled the word that Lady Bird Johnson wanted no part of when her husband President Lyndon Johnson died -- “widow” -- a Sanskrit word that meant “empty.” She was not empty, she asserted. She was grieving. But at least she had a word to resist.

During this Memorial Day, when we remember those who have died in war, we are still without a word that identifies their survivors’ loss. That denies them whatever notice formed words like “orphan” and ”widow” may provide. Grief leaves a melancholy and sometimes nameless company.

I’ve noticed this absence for each of the days, months and even years since our son’s death. I’ve leafed through the letters and emails from parents whose children have died, been brought to still respect by photographs mailed to me of t-shirts with the faces of dead children on them and images from sidewalk memorials. These were sent and shared by parents whose children’s deaths inverted the natural order of things and forced their mothers and fathers to do the business of burying. That ought to have been the labor of a grown child, not a task for their parents. I have heard that there is a Chinese saying that the grey haired should not bury the black haired. Of course. It is an offense to the order of things.

This idea of orderliness and the disorder of a child’s death eventually brought me back to the Sanskrit word “widow.” And as creative as I thought I might be with language, as liberal as I was willing to be in borrowing a word from another language -- maybe from Swahili or Greek, French or Thai -- or even creating one myself from a collection of letters that I might shape into the meaning I needed, I returned to the language that had already given us one word. I considered that Sanskrit might locate another. And I found
“vilomah.”

Vilomah means “against a natural order.” As in, the grey haired should not bury those with black hair. As in our children should not precede us in death. If they do, we are vilomahed.

Each Memorial Day, there is a mourning that defies a natural order. But it extends beyond war. We needed a name because of what happened at Columbine and Virginia Tech, for when a child is found beneath the rubble of an earthquake, or for dusty children who starve to death in Darfur. Our numbers grow daily -- with drive-bys and carelessness, with genocides, and accidents, illnesses and suicide.

Vilomah is a name for the grief we represent. It might sound odd at first. But we have grown used to the word “widow.” It’s not much different, and it shares the same etymology.

And unfortunately, these days can give us ways and means abundantly to grow accustomed to a vilomah. A parent whose child has died is a vilomah. Watch the evening news and you will see a vilomah. Scan the news on the web and you will read about a vilomah. Walk through your neighborhood, there are homes with vilomahs inside.

The difference between today’s grief and tomorrow’s is that now there is a name. Vilomah. A parent whose child has died.

---

Karla FC Holloway is the James B. Duke Professor of English at Duke University and author of "Passed On: African American Mourning Stories" (2002).

Travel Advice for Hospice and Palliative Care Patients

About.com's Palliative Care blogger, Angela Morrow, shares some helpful tips for those traveling with a hospice or palliative care patient.

Memorializing the Dead on Social Media

Friday's Sacremento Bee including a piece about memorials forming on social media websites, such as Facebook. These networks serve as a new outlet for grief, particularly among teenagers and young adults.

With more than 200 million active Facebook users, and half of all teenagers using some form of social networking, the practice of posting online messages to dead friends is a recent but increasing phenomenon. Facebook does not delete profiles of the deceased, according to a spokesperson, but puts them in a "memorial state," which hides some information from view.

A 2009 study published in the Journal of Adolescent Research on social networking and death found that users often continue a relationship with the profile of the deceased for months. The study looked at 20 deceased persons' profiles on an undisclosed social-networking site and recorded 1,167 people posting 4,780 comments over an average 10-month period.

Companioning As Part of Hospice Work

A hospice social worker shares eleven tenets of companioning she learns as part of her work. These tenets come from Alan D. Wolfelt, PhD, whose wrote the book Companioning the Bereaved: A Soulful Guide for Caregivers.

Saying Goodbye at the End of Life

This piece that appeared last week on CNN's website discussed how people talk about death among family members.

The reaction to a person's critical illness can vary from outright denial, to aggressiveness to complete openness, said David Casarett, associate professor of geriatric medicine at the University of Pennsylvania School of Medicine. "There's a huge spectrum. Everyone handles this a little differently."

His book, "Last Acts," which will be published this year, explores the choices people make when facing a terminal illness.

"The common perception is that facing our deaths will cause us to change in fundamental ways," Casarett said. "People face circumstances in different ways. Some people do change. Other people don't."

Hospice Volunteers Include Teens

This News-Journal (FL) article is part of a series honoring volunteer efforts by public high school graduates, in this case, a young woman who volunteered for Halifax Health Hospice.

Out of hundreds of volunteer hours, Chelsea Sopotnick said she'll never forget weaving the names of other people's loved ones into a memorial quilt.

Some hugged her while others shook hands and gave her thanks as the 18-year-old hospice volunteer received slips of paper with the names of deceased family members for the mass memorial service. A volunteer for about five years, Sopotnick said it was a prime example of the commitment Halifax Health Hospice of Volusia/Flagler has for the community.

"I'll remember it forever," she said. "It really defined what Hospice does and how supportive they are."

Sopotnick became part of that support system during the hurricanes of 2004, when her mom, a Hospice employee, brought her family there for shelter. The New Smyrna Beach High School student helped prepare food for patients and their family members and hasn't stopped volunteering since.

Thanks to the Alive Hospice blog for sharing.

Hospice Care Highlighted in the Boston Globe

The Boston Globe visits again with Judi Chamberlin, who writes the Life as a Hospice Patient blog. While the article is focused on the challenges Ms. Chamberlin is having with her insurance company, the piece and accompanying video highlight the wonderful care she is receiving from her hospice, which they have stated will continue irregardless of her appeal to her insurance company.

Hospice Advocacy Efforts Continue

From the press release:

A bipartisan group of 171 Members of the U.S. House of Representatives sent a letter to President Barack Obama this week showing their support to protect access to high-quality end-of-life care for the 1.4 million patients, and their families, who depend on hospice each year.

In the letter, lawmakers urged the President to stop cuts to the Medicare hospice benefit scheduled to begin on October 1, 2009, which threaten to jeopardize the compassionate care the nation’s hospices provide to the dying.

The letter was spearheaded by Representatives Chris Van Hollen (D-MD) and Ginny Brown-Waite (R-FL). A similar bipartisan letter is also gathering signatures in the U.S. Senate.

Over the past year, the National Hospice and Palliative Care Organization, the Alliance for Care at the End of Life, and thousands of Hospice Advocates from across the country have been working to overturn a 2008 rule issued by the Centers for Medicare and Medicaid Services under the direction of the Bush Administration. The rule eliminates a key component of the Medicare hospice benefit known as the budget neutrality adjustment factor (BNAF).

President Obama and Congress approved a moratorium on the hospice funding cuts earlier this year, but it expires on September 30, 2009. Without action by the Administration and Congress, hospice reimbursements through Medicare will be reduced by 3.1 percent in fiscal year 2010, leaving hospice programs nationwide, particularly smaller and rural ones, facing cutbacks in services and possible closure.

Hospice is the Answer

Samira Beckwith, President and CEO of Hope Hospice and Community Services and a panelist on HFA's 2009 Teleconference, writes an op-ed in The News-Press (FL) responding to a recent column on end-of-life care costs and caring.

In her May 8 column on end-of-life costs and caring, Ellen Goodman raises thoughtful questions about whether aggressive medical care for someone at the end of life is really in the best interest of the patient. Further, she wonders whether society should be obligated to pay for treatments that ultimately are of no real benefit to the dying patient.

Goodman asks, "Aren't there places at the end of life where ethics and economics, compassion and cost, dovetail rather than conflict?" The answer to this question is yes, and it is called hospice. As she addresses these issues, it is surprising that Goodman did not readily see hospice as the answer.

Lawsuits Bring Scrutiny to Hospital Policies at End of Life

The New York Times writes about two recent lawsuits being filed, one in Florida and another in Washington, where loved ones say the were kept from a patient's bedside while they were dying.

The case, now the subject of a federal lawsuit in Florida, is being watched by gay rights groups, which say same-sex partners often report being excluded from a patient’s room because they aren’t “real” family members.

And lawyers say the case could affect the way hospitals treat all patients with nonmarital relationships, including older people who choose not to marry, unmarried heterosexual couples and single people who rely on the support of close friends rather than relatives.

One point of contention in the lawsuit is whether a hospital has a legal duty to its patients to always give visiting rights to their designated family members and surrogates.

On the Pallimed blog, Christian Sinclair points out that in addition to discrimination, other barriers exist to good end-of-life care in hospital settings.

Many barriers to good patient-family-staff communication exist within medical facilities the greatest of which is lack of time. You add on top of that 'medical passwords for information', staff documentation, a lack of quality reimbursement structure to encourage better communication, an greater volume of clinical data and information, the loss of primary care representation in the hospital, the fractioning of physician specialists time on service, the presence of trainees, the micro-specialization of every service in the hospital, and the fact that medical staff have historically as a whole been poor communicators about the critically ill and dying patient, and you could see why lawsuits exists regarding communication.

. . .

Palliative care teams do a great job at taking a social history and finding out who needs the information and help build trust and open channels of communication with family, patients and medical staff. But they can't be everywhere and until this issue is settled in a court of law palliative care will just have to keep doing the best when we are consulted.

In addition, there are studies showing no significant harm by allowing family members in the room during codes and trauma situations so this statement from the hospital:

“The primary legal point is that the amount of visitation allowed in a trauma emergency room should be decided by the surgeons and nurses treating the patients,”

doesn't necessarily hold well.

Discussing Death

Maggie Mahar at the Health Beat blog writes about dying, after discussing the topic at a women's leadership luncheon recently.

Did you know that when there is “no hope of recovery” there are still things for the patient to hope for?

Did you know that a “living will” is not a legal document in New York State or Massachusetts?

Did you know that environmentalists have created nature preserves where you can be buried? “What we are doing is basically land conservation,” says Dr. Billy Campbell, who has created a preserve along Ramsey Creek in South Carolina. “By setting aside woods for natural burials, we protect it from development. At the same time, I think we put death in its rightful place, as part of the cycle of life. Our burials honor the idea of ‘dust to dust.’” Ramsey Creek is just one place where families can arrange “green burials.”

These are a few of the things I learned yesterday at a “Leadership Connection” lunch for women in business, politics and the non-profit sector. There, New York Times health editor Jane Brody spoke about her new book : Jane Brody’s Guide to the Great Beyond: A Practical Primer to Help You and Your Loved Ones Prepare, Medically, Legally, and Emotionally for the End of Life.

Pediatric and Perinatal Memorial Services

Stephanie Miller, a hospice chaplain, discusses pediatric and perinatal memorial services and implementing such a service at Alive Hospice.

In the fall of 2008, I was privileged to visit Hospice of Chattanooga in Chattanooga, TN. I wanted to observe a similar-sized hospice and shadow a chaplain and bereavement counselor for a day to glean new knowledge and share experiences. I was also able to attend a memorial service that they sponsored for the community, honoring the families of babies who had died. It was a moving service with poignant rituals and moments that honored the lives of those we were there to celebrate, no matter how short.

In discussing the memorial service with Amy Brin, director of our Alive Monarchs program for pediatric and perinatal patients, it was very clear that this event was needed here at Alive Hospice, both by our families as a way to remember, and by our staff as a way to honor Alive’s young patients who had died. We hoped it would be well-received by staff and families as a sacred space to which they could come and continue the process of healing.

Perceptions of Palliative Care Among Pediatricians

Pallimed's newest blogger, palliative care physician Dr. Lyle Fettig, writes about a survey in the journal Pediatrics that examines pediatricians' views of palliative care .

The study assesses how pediatricians define palliative care (and their view of the relationship of palliative care to hospice), what the pediatricians’ personal experience is with palliative care, and whether pediatricians agree with the Institute of Medicine’s recommendation to refer pediatric patients “before the end-of-life.” Pediatricians from Florida and California were surveyed. These states avail Medicaid waivers for pediatric palliative care services to eligible children. Of the 303 respondents, 76% were in private practice and the remainder practiced in an academic setting. Both generalists and subspecialists were included in the survey and there was an equal distribution of time in practice (with a third practicing less than ten years, a third between 11 and 20, and a third more than 20).

Of respondents, 41.9 % defined palliative care to be the same as hospice, 31.9% defined them differently, and the rest weren’t sure. Pediatricians at academic medical centers were twice as likely to define palliative care as different from hospice. About half of respondents had made a referral to a palliative care service previously, a percentage which wouldn’t have seemed high to me if they had surveyed pediatricians exclusively in academic settings, where I suspect most non-traumatic pediatric deaths occur. Since a significant minority equated palliative care with hospice (I'll call them "conflators"), I suspect that many of these referrals were to a hospice, not a palliative care program per se. Of those that had made referrals, the vast majority (83.7%) had referred two or fewer patients.

Benefits of Early Hospice Care

This blogger writes about his personal experience with hospice care for his mother. He speaks the to benefits of receiving hospice care earlier, rather than waiting until the final days.

This week, I’m blogging about something many of us may never encounter. Frankly, until fairly recently, I didn’t think I’d get close enough to this program to really get to understand it.

I thought I would be lucky or blessed if our paths never crossed.

This week, I’m blogging about hospice.

You see, until about nine months ago, I thought hospice was only for people with a terminal illness. I presumed their function was to ease the sufferer’s pain and gently guide them from the transition from mortality to eternity.

Sometime around summer of 2008, my parents told me that mama’s doctor had set her up on in-home hospice. My initial reaction was one of alarm.

Read the whole post.

Hospice Caring Over the Phone

This article from the Columbia Daily Tribune (MO) talks about calls made by hospice volunteers to patients as an important component of hospice care.

Diagnosed with liver cancer, Brady began receiving hospice care in August 2007 from Community Hospices of America (CHA), only months after his wife died from her own battle with cancer.

No matter how dark it may at times seem, however, his day suddenly brightens at about 6:30 each evening. That’s when Brady receives his daily phone call from Angie Patterson, a non-medical volunteer with CHA. Angie is his “care caller.”

A care call is a brief phone call placed every day by a hospice volunteer, to check in, say ‘hi’ and see how the patient is doing. It’s simply a way of saying, “I care about you. I’m thinking of you.”

It’s also a way of checking to see what needs the patient has that the hospice team might be able to help meet.

“Angie is a blessing to be had, a real wonderful person,” Brady said. “When I’m down and out, she can sense it, and she picks me right up — she’s very good at that. I’m blessed that I’ve got Angie to talk to.”

According to Patterson, the blessing goes both ways.

Palliative Care Research Grants Awarded

From the press release :

The American Cancer Society and the National Palliative Care Research Center (NPCRC) are awarding $1.5 million in research grants to researchers at eleven institutions for studies aimed at reducing suffering for seriously ill patients and their family caregivers. The studies will be conducted over the next two years. The NPCRC, in collaboration with the American Cancer Society, has directed over $5 million towards supporting 38 palliative care research projects since starting this initiative three years ago.

Improving Narrative Skills in Doctoring

David Morris, PhD, urged doctors at a recent American Pain Society meeting to use narrative skills.

“Chronic pain patients often can feel out of control and hopeless,” said Morris, who recently retired from a joint appointment at the University of Virginia in the English Department and UVa Medical School’s Center for Bioethics and Humanities.

“Narrative competence serves medical professionals beyond treatment of illness. It can provide knowledge about lifestyles and preferences as vital as numerical data on cholesterol levels or blood pressure. I believe clinicians with strong narrative abilities can help reduce their patients’ fear, lower perceived pain intensity, and improve overall quality of life,” he said.

Morris reported that one study of 100 patients showed that patient beliefs about pain correlated directly with treatment outcomes. He observed that dialogue can help patients replace or revise harmful forms of narrative, such as catastrophizing, in which pain patients feel anxious, fearful and hopeless, as if disaster were imminent.

“Every patient has a story, and narrative medicine allows clinicians to work with patients to expose beliefs that may create barriers to effective treatment,” he said. “There surely are benefits to helping patients replace counter-therapeutic narratives with a new narrative focused on supportive beliefs that promote health and sustain wellness. Patients want a narrative model for hope.”

Cancer Caregivers

The Wellness Community, a nonprofit supporting cancer patients and their families, commissioned a survey of 1,002 Americans about their role as caregivers.

Only 20 percent of Americans who provide support to a loved one with cancer consider themselves a "cancer caregiver," well below the national estimate of 60 percent, a national survey released today shows.

This year, it is projected that 1.4 million people in the United States will be diagnosed with cancer. For most of these individuals, someone who cares about them will take on the role of caregiver. A cancer caregiver is anyone who provides physical, emotional, financial, spiritual or logistical support to a loved one with cancer.

Approximately 90 percent of those surveyed felt they were not very knowledgeable or only somewhat knowledgeable about cancer caregiving. This lack of understanding is also reflected among those with caregiving experience. In fact, more than 65 percent of people who consider themselves cancer caregivers expressed limited knowledge on the subject.

Center for Practical Bioethics Establishes New Palliative Care Chair

From the release :

The Center for Practical Bioethics has established the Kathleen M. Foley Chair for Pain and Palliative Care, funded by a $3 million endowment.

The Kansas City-based center said in a Tuesday release that the new chair will continue to increase standards for pain education research and policy. Foley is a revered neuro-oncologist and international leader in pain and palliative care, the center said in the release. She is attending neuro-oncologist in the Pain & Palliative Care Service at Memorial Sloan-Kettering Cancer Center in New York City.

Dr. Foley served as a panelist for HFA's 2006 initiative, Pain Management at the End of Life: Bridging the Gap Between Knowledge and Practice. She also wrote the foreword for the companion book.

Goals for Treatment - Patient/Provider Discussions

Pallimed's Drew Rosielle writes about a study in the Journal of Clinical Oncology, "Patient Involvement in Decisions to Limit Treatment: The Crucial Role of Agreement Between Physician and Patient." The study, by German and Swiss researchers, surveyed 76 cancer patients and their physicians where ". . .the limitation of life-prolonging treatment was discussed. Embedded researchers on the wards recorded the patient's history, medical condition, type of treatment limitation discussed, patient wishes, decision-making capacity, and patient involvement using an in-depth documentation procedure."

Diminished Capacity Webinar

The National Elder Rights Training Project is offering a series of webinars, sponsored by the National Consumer Law Center and a grant from the Administration on Aging. Next Wednesday, May 20, 2009 there is a free webinar on Dimished Capacity, at 2 p.m. EDT. See the Medical Futility blog for more information.

How do lawyers and other non-clinicians recognize and address diminished capacity in providing professional services to individuals? Some might argue that without training in mental disorders of aging and methods of formal capacity evaluation, you should not be making determinations about capacity at all. Yet lawyers and other professionals unavoidably face situations in which they must at least screen for capacity, either in connection with representing the individual in transactional work, or in the context of a guardianship action or other litigation, or serving as a guardian. A preliminary assessment of capacity is either done by the seat of your pants or with some objective grounding.

This webinar will provide you with tools for objectively making preliminary assessments of capacity and undue influence, while balancing the competing goals of preserving autonomy and protecting vulnerable individuals. Participants will have online access to: Assessment of Older Adults With Diminished Capacity: A Handbook for Lawyers by the ABA Commission on Law and Aging and the American Psychological Association.

Home Health Aides and Aging in Place

This past weekend the Washington Post Magazine published a feature about a home health aides and family caregivers, including 104-year-old woman who cared for her 91-year-old sister in her home. The feature includes a slideshow with audio and an accompanying interview with the Marla Lahat , executive director of a home healthcare agency. The story follows Marilyn Daniel, a home health aide, throughout her daily tasks.

The country will need hundreds of thousands more workers like Marilyn Daniel if it's going to keep today's elderly, followed by their far more numerous baby boomer children, out of institutions. Already, the occupational category called "personal and home-care aides" is the nation's second-fastest-growing, the Bureau of Labor Statistics reports. It projects a more than 50 percent increase in such jobs by 2016, second only to the demand for "network systems and data communications analysts."

It's not hard to see what's fueling the need. Americans survive far longer than they used to: A man who reaches age 65 can now expect to reach 82, and a woman 85, the National Center for Health Statistics reports. But most spend those extended lives contending with chronic illnesses and disabilities, including climbing rates of Alzheimer's, that can make it risky and difficult to maintain an independent household, or even to take an unassisted shower.

Improving Pediatric Palliative Care in Pennsylvania

This story from a Pennsylvania public radio station discusses a task force to improve the availability of pediatric palliative care in the state . A related interview was posted with a bereaved mother who is actively trying to improve the care for terminally ill children in the state.

Here is the Pennsylvania state website for more information on the task force and a link to their final report.

The Alzheimer's Project

HBO Documentary Films and the National Institute on Aging has produced a four-part series on Alzheimer's disease airing on HBO. The segments can also be viewed online here.

One: The Memory Loss Tapes - This verité documentary profiles seven people living with the disease, each in an advancing state of dementia across the full spectrum of the progression of the disease.

Two: Grandpa, Do You Know Who I Am? - This film tells five stories of children, ages 6-15, who are coping with grandfathers or grandmothers who have Alzheimer's disease.

Three: Momentum in Science - This two-hour, two-part documentary takes viewers inside the laboratories and clinics of 25 leading scientists and physicians, revealing some of the most cutting-edge research advances.

Four: Caregivers - Caregivers is a collection of five portraits, each of which highlights the sacrifices and successes of people experiencing their loved one's gradual descent into dementia.

Nurses Surveyed on End-of-Life Care Perceptions

Georgetown University Hospital surveyed over 100 nurses who attended an End-of-Life Nurse Consortium Course about their perceptions of the quality of end-of-life care provided at the hospital.

Fifty-two percent of the nurses had never received end-of-life care training, although in the previous six months, 43 percent had been involved in caring for one to three patients at the end of life.

Cleaning House

Sara Davidson at the New Old Age blog posted needing to clear out her mother's home when she moved into a care facility for people with Alzheimer's disease, and the difficult negotiations she had with her sister deciding what to keep, sell, or give away. Paula Spencer at Caring Currents went through a similar exercise recently and posted some tips she gathered from a discussion forum on Caring.com.

Most caregivers face the "junk wars" with still-living relatives. It can happen when you combine households because of the recession. Or help a parent downsize into assisted living. Or just try to make a crowded old house safer for an older adult in which to age-in-place.

Health Care Disparities at the End of Life

The California Health Advocates website recently posted an article about health disparities in end-of-life care. In a good summary of a few recent studies, the article addresses higher health care costs for African American and Latinos than whites in the last year of life, the higher utilization of hospice among whites, and the lessening of health disparities for people over the age of 65 who are eligible for Medicare.

Palliative Care Ground Rounds is Up

The fourth edition of Palliative Care Grand Rounds , a "monthly blog carnival" highlighting blog posts related to hospice and palliative care, is up at the Medical Futility blog. Several posts from the Hospice and Caregiving blog are included - thank you!

Addressing the Needs of Palliative Care Patients Around the World

A new international alliance was launched this week to address the needs of palliative care patients worldwide. The Worldwide Palliative Care Alliance (WPCA) states that globally, 100 million people need palliative care each year, but only seven percent receive it. From the press release:

WPCA activities are carried out by a number of workgroups chaired in different national associations and with members from around the world, as follows:

• Advocacy – Canadian Hospice Palliative Care Association
• World Hospice Palliative Care Day sub group, France
• Education and Training – Hospice Palliative Care Association, South Africa
• International Children’s Palliative Care Network (ICPCN) – Hospice Palliative Care Association, South Africa
• Policy – African Palliative Care Association, Uganda
• Quality and Standards – National Hospice and Palliative Care Organization, USA
• Research - Palliative Care Australia

Training Health Care Workers to Talk about Death

Monday's Health Beat blog included a post about how the United States trains doctors and nurses and the need for change. Maggie Mahar states that doctors and nurses need to be able to talk to their patients about death.

While moderating a panel on making medical education more “patient centered,” I suggested that dying patients should share in decisions about end-of-life care. This means that students must learn how to approach a dying patient and see her as a whole person, with fears, hopes and priorities that she needs to express—and that a doctor must respect.

Students training to become doctors and nurses should spend some time studying “palliative care”--the art of caring for patients who may well die. This includes controlling their pain and helping them consider their options. Palliative care specialists know how to talk to dying patients and their families, how to outline the pros and cons of various procedures, and how to help the patient decide whether or not he or she wants to pursue a particular course of treatment. Too often, if a patient doesn’t have a palliative care team, a doctor will simply announce: “This is what we do next. This is the protocol.” The patient is given little choice.

A palliative care team made up of a doctor, nurse and psychologist are not embarrassed by the fact that the patient is dying. They understand that the patient cannot make meaningful choices unless that fact is acknowledged. Students should be assigned to sit in when members of a palliative care team talk to patients and their families (with the permission of patient and family.)

Students need to spend time with a palliative care tem because in many medical schools death is not part of the curriculum. According to the Institute of Medicine, a 1990s study of third-year medical students revealed that 41 percent reported that they had never heard a doctor talking to a dying patient; 35 percent had never discussed care for dying patients with an attending physician, and the great majority had never been present when a surgeon told a family that a patient had died. Almost half of patients could not remember any consideration of death and dying in the curriculum.

In his 2007 book, Last Rites, Steven Kiernan cites more recent studies which reveal that death continues to get short shrift in medical education.

Yet nearly every doctor will, at some point, find himself treating a dying patient. And nurses spend more time with the dying than anyone else in a hospital. It is imperative that they learn how to control pain. Today, too many nurses are wary of giving patients the painkillers they need; some are afraid that a dying patient will become “addicted” to the opiate.

Ultimately, a doctor may well want to call in a palliative care team to make sure that the patient is getting adequate pain relief, and to help the patient consider his options. But first, the doctor who has been caring for the patient needs to acknowledge that the patient is probably dying, make peace with that fact, and communicate with the patient in a way that makes it clear that the doctor does not consider the patient’s death—or the patient himself-- a “failure."

Bereaved Fathers Find Support From One Another

This piece from The Boston Globe talks about a bereaved fathers group, and how meeting separately in a support group for men helped them in their grieving process.

Each man's story is as painful as the next. Members of Fathers Forever bear witness to one another's grief and to their progress. "It's just a place where you can go where your life experience as a father is normal," says Bigham, one of the four cofounders. "If you were at work and you said, 'I want to talk about my dead daughter,' people would turn to stone."

Fathers Forever grew out of a therapy group in Needham run by psychologist Linda Gudas. In 2004, with her guidance, the men broke off on their own. Membership grew by word of mouth and jumped when they invited an author to speak about men and healing. Today they have 40 men on the e-mail list; six to eight of them attend the monthly breakfasts on a regular basis. The group also has a website, www.fathers-forever.org.

The founders were initially dubious. Grief counseling had not worked for them; they felt it was largely by women, for women. But they soon began to feel the benefits of the group.

Interview with Sonya Herbert on End-of-Life Care Photographs

The Poynter Center interviews Dallas Morning News photographer Sonya Hebert about her Pulitzer Prize-winning photographs for a series on end-of-life care at Baylor University Medical Center in Dallas.

Kenny Irby: How did the "At the Edge Of Life" project originate, and how long have you done this kind of work?

Hebert: The concept of the project was born before I started working at the Morning News. Our project began with personal loss. Reporter Lee Hancock's youngest brother spent five years in and out of ICUs before succumbing in 2005 to complications from a fungal infection. She saw how everyone around a hospital bed suffers when no one can talk openly about mortality.

Death is the last great taboo, a subject few volunteer to explore intimately. Our newsroom is no exception, as it routinely covers accidents, violence and freakish tragedies but rarely examines how death comes about for ordinary people. We felt compelled to look at our way of dying and how we might cover the subject better.

Thanks to the Medical Futility blog for sharing.

Radio Series on End-of-Life Care in America

Boston's National Public Radio station, WBUR, recently ran a series called "Quality of Death: End of Life Care in America." Rachel Gotbaum examines "what prevents many patients from having a dignified death." The segments are:

Segment One: A costly ordeal
Segment Two: What the patients want
Segment Three: Palliative care
Segment Four: Talking about death
Segment Five: Comfort and costs

The series includes an interview with Diane Meier of the Center to Advance Palliative Care and Elliott Fisher of the Dartmouth Atlas Project. The Running a Hospital blog includes all the segments in an easy to navigate list.

May 13, 2009 - Next CMS Home Health, Hospice and Durable Medical Equipment Open Door Forum

From the Medicare Update blog:

The Centers for Medicare & Medicaid Services (CMS) will hold a Home Health, Hospice & DME Open Door Forum at 2:00pm ET on May 13, 2009.

To participate by telephone, dial 1-800-837-1935 and use conference ID 94280596. To participate in person, RSVP by 2:00pm ET on May 11, 2009 to HOMEHEALTH_HOSPICE_DMEODF-L@cms.hhs.gov, and include your name, organization, telephone number, and "Home Health" in the subject line.

Center to Advance Palliative Receives Award

The Center to Advance Palliative Care (CAPC) received the American Hospital Association's (AHA) Award of Honor last week. The award was given in recognition of its "outstanding contributions to improving the health status of communities and the nation. The award recognizes exemplary contributions to the health and well-being of people through leadership on major health policies or social initiatives."

Healthcare Reform Resolution Announced

The National Hospice and Palliative Care Organization has issued a Healthcare Reform Resolution for legislators, regulators, policy experts and the administration to consider in U.S. healthcare reform proposals.

Diversity and End of Life Care Discussed Across the Nation

Hospice Foundation of America’s 16^th Annual Living With Grief Teleconference was held this past Wednesday at over 1,000 locations in the U.S. and Canada. The program focused on ways of understanding diversity and how cultural histories, traditions and beliefs can affect end of life care. The two and one-half hour satellite broadcast was followed by a half-hour discussion by local panels.

At the University of North Texas in Denton, the teleconference was hosted by the Denton Area Partnership For End-of-Life Care. In Williamsport, Pennsylvania, participants heard from local panel members, Jim Huebert, manager of Susquehanna Health Social Services; Abdul Jaleel, spiritual leader of the local Islamic community, and Dr. Alan Nesbitt, medical director of Susquehanna Health’s Hospice program. At the University of Nevada School of Medicine in Reno, a panel that included Hindu, Buddhist, Muslim, Jewish, and Christian faith leaders led a discussion after the broadcast.

A DVD of the broadcast will be available in June and the companion book, Living With Grief: Diversity and End-of-Life Care is available now.

CMS Adds New Physician Code and Essay Requirement

Two notes from the Centers for Medicare & Medicaid. MedPage Today reports that starting next year, physicians will need to write a "short narrative" describing the patient's clinical condition. The proposed rule will take place in 2010. CMS was reacting to a recommendation made by the Medicare Payment Advisory Commission (MedPAC).

CMS has also announced the addtion of a new physician code to categorize Hospice and Palliative Care physicians. This new physician specialty code is 17 and will take effect October 1, 2009.

Notes on Pain Management: Morphine Ban and Other Research

The New Old Age blog touched again on the Federal Drug Administration's initial ban and then reversal of its decision regarding concentrated liquid morphine.

ScienceDaily reports on research from Hebrew University of Jerusalem, that shows researchers were able to provide more effective pain relief over the long term without having to increase the dosage of morphine when combining the treatment with another drug in animal experiments.

President Obama Discusses End-of-Life Care

In the New York Times, David Leonhardt interviews President Obama and they discuss end-of-life care as part of health care reform.

And right now we’re footing the bill for a lot of things that don’t make people healthier.

THE PRESIDENT: That don’t make people healthier. So when Peter Orszag and I talk about the importance of using comparative-effectiveness studies (9) as a way of reining in costs, that’s not an attempt to micromanage the doctor-patient relationship. It is an attempt to say to patients, you know what, we’ve looked at some objective studies out here, people who know about this stuff, concluding that the blue pill, which costs half as much as the red pill, is just as effective, and you might want to go ahead and get the blue one. And if a provider is pushing the red one on you, then you should at least ask some important questions.

Won’t that be hard, because of the trust that people put in their doctors, just as you said? Won’t people say, Wait a second, my doctor is telling me to take the red pill, and the government is saving money by saying take the blue —

THE PRESIDENT: Let me put it this way: I actually think that most doctors want to do right by their patients. And if they’ve got good information, I think they will act on that good information.

Now, there are distortions in the system, everything from the drug salesmen and junkets to how reimbursements occur. Some of those things government has control over; some of those things are just more embedded in our medical culture. But the doctors I know — both ones who treat me as well as friends of mine — I think take their job very seriously and are thinking in terms of what’s best for the patient. They operate within particular incentive structures, like anybody else, and particular habits, like anybody else.

And so if it turns out that doctors in Florida are spending 25 percent more on treating their patients as doctors in Minnesota, and the doctors in Minnesota are getting outcomes that are just as good — then us going down to Florida and pointing out that this is how folks in Minnesota are doing it and they seem to be getting pretty good outcomes, and are there particular reasons why you’re doing what you’re doing? — I think that conversation will ultimately yield some significant savings and some significant benefits.

Now, I actually think that the tougher issue around medical care — it’s a related one — is what you do around things like end-of-life care —

Yes, where it’s $20,000 for an extra week of life.

THE PRESIDENT: Exactly. And I just recently went through this. I mean, I’ve told this story, maybe not publicly, but when my grandmother got very ill during the campaign, she got cancer; it was determined to be terminal. And about two or three weeks after her diagnosis she fell, broke her hip. It was determined that she might have had a mild stroke, which is what had precipitated the fall.

So now she’s in the hospital, and the doctor says, Look, you’ve got about — maybe you have three months, maybe you have six months, maybe you have nine months to live. Because of the weakness of your heart, if you have an operation on your hip there are certain risks that — you know, your heart can’t take it. On the other hand, if you just sit there with your hip like this, you’re just going to waste away and your quality of life will be terrible.

And she elected to get the hip replacement and was fine for about two weeks after the hip replacement, and then suddenly just — you know, things fell apart.

I don’t know how much that hip replacement cost. I would have paid out of pocket for that hip replacement just because she’s my grandmother. Whether, sort of in the aggregate, society making those decisions to give my grandmother, or everybody else’s aging grandparents or parents, a hip replacement when they’re terminally ill is a sustainable model, is a very difficult question. If somebody told me that my grandmother couldn’t have a hip replacement and she had to lie there in misery in the waning days of her life — that would be pretty upsetting.

And it’s going to be hard for people who don’t have the option of paying for it.

THE PRESIDENT: So that’s where I think you just get into some very difficult moral issues. But that’s also a huge driver of cost, right?

I mean, the chronically ill and those toward the end of their lives are accounting for potentially 80 percent of the total health care bill out here.

So how do you — how do we deal with it?

THE PRESIDENT: Well, I think that there is going to have to be a conversation that is guided by doctors, scientists, ethicists. And then there is going to have to be a very difficult democratic conversation that takes place. It is very difficult to imagine the country making those decisions just through the normal political channels. And that’s part of why you have to have some independent group that can give you guidance. It’s not determinative, but I think has to be able to give you some guidance. And that’s part of what I suspect you’ll see emerging out of the various health care conversations that are taking place on the Hill right now.