Hospice Care - A Team Approach

Kim Underwood at the Winston-Salem Journal wrote a nice piece on the various roles played by a hospice care team. In addition to writing about hospice nurses and doctors, Underwood discusses the role of the hospice chaplain in some detail:

If a person does want to work with Bradstock, his goal on the first visit is to do a spiritual assessment to find out both what sort of care and attention the person wants and what approach he thinks would be most helpful.

At the heart of figuring that out is learning where people are in their relationship with God, or, more generally, a higher power. It doesn't matter whether the person is Christian, Buddhist or Muslim. And, if the person isn't sure about the existence of God or is sure that God doesn't exist, Bradstock works with that.

"I don't go in with any preconceived ideas," he said. "I work with people who are agnostic. I work with people who are atheist."

Some of his most fruitful work is with agnostics, he said. "I love working with agnostics because they have honest questions."

Bradstock says that he has to be careful not to impose his own beliefs on others.

"Hospice chaplains have to be strong enough with their own theology that they can set it aside," he said. "At the first sign that I am putting myself before the patient, I back away."

Round-up: End-of-Life Care Topics

• A hospital in Silver Spring, MD is opening up emergency department for older adults. The new department was designed in partnership with Dr. Bill Thomas, a geriatrician who writes the Changing Aging blog.


• San Diego will offer palliative medicine services by phone and internet. As part of a grant from UnitedHealth Group, the Institute for Palliative Medicine, which is located at the San Diego Hospice campus, will run the program.


• Earlier this month, the Washington Post published a piece by Dr. Craig Bowron, a hospitalist who offers his view of the care dying patients receive in U.S. hospitals. Dr. Bowron was interviewed on Minnesota Public Radio on Wednesday, along with Dr. Robert Kane, Minnesota Chair in long-term care and aging at the University of Minnesota School of Public Health.


• Last year the International Journal of Palliative Care Nursing featured an article by Dr. Pamela van der Riet on palliative care workers' perceptions of nutrition and hydration at the end of life. Yesterday, the International Program of Psycho-Social Health Research conducted an interview with Dr. van der Riet available on podcast.

A Judge's Role in End-of-Life Decisions

This article from The Morning Call (PA) looks at the difficult role a county judge must sometimes play in determining end-of-life care decisions when a patient's wishes are unclear. Judge Edward Reibman discusses the challenges:

'I'm sitting there on the bench, I'm supposed to make this decision based on the law, a sound rational decision,'' he said. ''How do I make sure that my own biases don't dictate that decision?''

His search for answers led him to convene a panel earlier this month, a talk that those who attended said probably will be the first of many. Reibman called together doctors, lawyers, religious leaders and court-appointed guardians, all charged with helping make decisions for others.

They all agreed on one thing -- the right choices are seldom clear.

''The reasonable person standard sounds great, until the rubber hits the road,'' Reibman told more than two dozen assembled at Lehigh Valley Hospital-Cedar Crest to discuss what has become an increasingly complex issue.

The Role of Nurses in End-of-Life Care Planning Examined

The November-December 2008 issue of Nephrology Nursing Journal included an article examining the role nurses could plan in end-of-life (EOL) care planning for dialysis patients, 65 percent of whom do not have advance care plans in place. The article's authors, Christine M. Ceccarelli, MSN, RN, MBA, CNN; Debra Castner, MSN, RN, APNC-BC, CNN; and Mary S. Haras, MS, MBA, APN, NP-C, CNN, explored nurses' barriers to discussing EOL care.

They cite studies that have examined why nurses are reluctant to start these discussions, including fear of patient and/or family reactions to the topic, lack confidence in starting EOL conversations, feeling uncertain their supervisors will support their efforts, and being unsure how to handle patients' religious and cultural beliefs. There are also concerns about ethical and legal boundaries in EOL discussions. The authors recommend:

. . . careful collaboration by the healthcare team. "Nurses cannot initiate advance care planning with patients in a vacuum," Ceccarelli wrote. "Support for these discussions requires commitment, planning, and leadership by all caregivers."

Proper planning and appropriate referrals will be achieved after all parties (including patients and families) have been educated and effective communication has occurred, according to the authors.

Palliative Care Notes - January 2009

• An Arkansas hospitalist ended 2008 posting about top issues in hospital medicine. This post addresses the confusion that surrounds the concept of palliative care.
  

  What the various descriptions of palliative care have in common are attributes all of health care aspires to: quality of life, symptom relief (palliation means helping things get better, after all), excellence and efficiency (avoiding high tech, expensive care for those who won’t benefit). Palliative care, then, is just good old fashioned doctoring. Why does it require a special service?



• The Palliative Care Success blog asks the question - are there successful palliative care business models ?
  

  Back to the question I’ve contemplated a great deal over the past couple of months – will health reform accelerate or stall the progress of palliative medicine? It seems to me that the answer depends upon whether one believes that there exists today a business model that pretty much guarantees a livelihood to a physician practicing palliative medicine full-time. In other words, the practice can sustain itself through patient revenues without having to rely upon subsidies from a hospital or other sponsoring organization (if a hospital , for example, wishes to support a practice because it recognizes the value of a palliative medicine practitioner, by all means such supported should be accepted). But there is a big difference between HAVING to GO back to a sponsor to request additional subsidies to relieve the growing pains of a palliative medicine practice, or operating a practice whose value (financially and clinically) is so widely acknowledged that the practice is actually “sought after” by other providers. And while palliative medicine physicians are surely in demand, just as surely palliative medicine practices are not. Therein lies the great disconnect.



• Pallimed has posted the first two of five blogs on hospice and palliative medicine issues for 2009. The first discusses advancing palliative care research. There Dr. Sinclair mentions a wish for "a resurgence of the community based hospice research. With all the care being delivered by hospice agencies, we are missing out on lots of observational data because of the barriers to beginning research from non-academic medical institutions." The second deals with getting palliative care intro mainstream medicine.


• The American Academy of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA) is hosting their annual assembly March 25-29, 2009 in Austin, TX. The meeting is designed for physicians, nurses, and other healthcare providers interested in acquiring, maintaining, or expanding the skills needed to care
  for patients with terminal illnesses.


• The European Association for Palliative Care is holding its 11th Congress meeting May 7-10, 2009 in Vienna, Austria.

Death Perceptions Series

On January 11, The Columbus Dispatch began a series covering professionals who deal with death every day as part of their job. The accompanying video series features interviews with a pediatric hospice nurse, a child-mortality expert, a trauma surgeon, a paramedic, a funeral home director, a youth pastor, a pathologist, a homicide detective, an organ-donor coordinator, and a state highway patrol trooper. The series will be complete on February 2. An excerpt from the interview with Beth Josolowitz, a pediatric hospice nurse:

"With hospice, it's no longer curative care, it's comfort care," said Josolowitz, 54, a hospice nurse at Children's. "It's support; it's helping people live out their wishes for their final months, weeks and days.

"It's what kind of journey they want."

Each hospice team -- nurses, a chaplain and a social worker -- works with the patients and their families to give them some sense of control.

Josolowitz sees her role as a "midwife on the other side," helping families through the journey from diagnosis to death.

"I pray to the universe to make this a meaningful time, a pain-free time for the child," Josolowitz said. "I send prayers that I will be of assistance, that I can make the child comfortable."

The job takes a toll on her as she watches children slip away and families struggle under the weight of grief. She looks for moments of joy, compassion and love to take with her after a patient dies.

She keeps mementos of patients, their parents and siblings in a drawer.

"I never want to forget these families," Josolowitz said. "I never could forget them."

Challenges in Transitions Between Care Facilities

The New Old Age Blog discusses the challenges family caregivers face when a patient is transferred between care facilities, such as from a hospital to a rehab center or home. Caregiver Carol Levine shares her experience and a new campaign designed to improve the process.

It wasn’t that Ms. Levine resented the hard work and time commitment, she said, but rather that nobody in the hospital had prepared her for what would happen in rehab, just as the rehab staff would not prepare her for what lay ahead once she took her husband home. Until Howard Levine’s death last year, aides cared for him 12 hours a day. The rest of the time, Ms. Levine handled these duties on her own. It was a daunting experience that I suspect few of us would survive without resorting to a nursing home. What galled her the most, though, was being ignored or disrespected by professionals and left to fend for herself.

As a result, transitions from one care setting to another have informed Ms. Levine’s writing, research and advocacy as director of the families and health care project at the United Hospital Fund of New York. Now that preoccupation has culminated in an ambitious campaign called Next Step in Care, which launched on Tuesday with a Web site designed to help health care professionals and family caregivers learn to handle these hand-offs, as they are known in the trade, in a way that is safer for the patient and less frightening for the caregiver.

A Good Death in America

An interview with Dr. Robert L. Martensen, who has written a book critiquing health care in the United States. Claudia Dreifus asks Dr. Martensen about the way people die in America.

Q. In your book, you particularly criticize the American way of dying. Why do you feel that this aspect of health care is on the wrong track?

A. Most Americans die in hospitals or nursing homes, and neither is configured to take care of dying patients. There’s little palliative care available, and often the payment structure of health insurance doesn’t support it.

So you end up with situations where a 90-year-old with organ failure is brought to an emergency room and the doctors go, “Let’s tune her up.” Or if the patient starts failing at the nursing home, they’ll say: “No one dies here. Let’s get her to the emergency room.” It’s not unusual in the last six months of a patient’s life that they’ll be shuttled between the nursing home and hospital 6, 8, 10 times and subjected to a lot of painful and expensive interventions. The patient is artificially maintained that way until their body gives out.

I’ve done ethics consults for hospitals where patients have been in the I.C.U. for six months. An elderly woman has gone from a serious neurological problem to end-stage renal disease, with no hope of ever being able to move a finger and no one told the family, “Your mom is dying.” When it was finally said, the relatives were furious.

Q. WHAT SHOULD DOCTORS SAY INSTEAD?

A. I think doctors should get comfortable with being realistic. If it is the case, the doctor should bring up the idea that this disease process might be fatal. Right now, we say, “I can’t take away a person’s hope,” as if doctors were bestowing life. You have to support those hopes that are realistic, not this fantasy land.

I’ve seen how a lot of these interventions are inhumane. If you resuscitate an older person, you may break their ribs during C.P.R. If you put them on a ventilator, you may end up sedating them so heavily they are barely conscious.

Q. CAN THERE BE SUCH A THING AS A GOOD DEATH?

A. My father had one. He was a systems engineer. In his 80s, he developed serious pulmonary problems, and he was very savvy about how things can go wrong in complicated systems, which hospitals are. To make sure that nothing was done to him that only technically extended his life, he made sure that his wife, doctor and hospital had copies of his medical directives. He didn’t have an extended period of dying because he avoided being put on a ventilator. My father died comfortable, surrounded by people who loved him. He was lucid till about five minutes before his death.

I think that’s what I’d want for myself, too. It’s not easy to get. I’ve seen situations where people leave specific directives and the hospitals still resuscitate them.

Improving End-of-Life Care for American Indians

A Montana State University nursing professor has been given a grant to improve end-of-life care among the Blackfeet tribe.

Since most hospitals funded by the Indian Health Service are focused more on acute care treatment and services for chronically ill people, end-of-life services for patients on Indian reservations are sometimes lacking, said Yoshiko Colclough, an assistant professor of nursing at MSU.

"But the reality is people are dying, and palliative care is needed," Colclough said.

The LAF notes that cancer occurrence is significantly higher among American Indian populations compared to whites with respect to both incidence and mortality.

MedPAC Proposed Changes to Medicare Hospice Payments Getting Attention

Joanne Kenen at The New Health Dialogue Blog writes about the new MedPAC recommendations for changing the current payment system under the Medicare hospice benefit. Several end-of-life care organizations issued a consensus statement regarding the recommendations last week.

After all these years of writing about health policy, I finally attended my first MedPAC meeting the other day. (Not sure what it says about me that I found it interesting.) They recommended a significant change in how hospices are paid under Medicare starting in 2013. Instead of one daily per diem, the rates would be higher at the beginning of a hospice stay and after a death, the two points when care is most intensive. (Transcript here, policy brief here, background from June MedPAC report here) First a bit of back story...

About two years ago, I tried to write an article about the growth of for-profit hospices. I spent weeks on it, and it was a frustrating exercise. I couldn't make it, as some editors wished, completely black and white. Not-profit good. For-profit bad. It isn't that simple; tax status doesn't in and of itself determine whether a hospice provides high quality, compassionate care to the dying. Remember too, there are for-profit, publicly traded, investor-owned chains as well as small for-profits owned by a family or individuals who may just prefer the control they have in the for-profit model, without having to deal with a nonprofit board. In the reporting I've done over the last few years on end-of-life care, I've met families who got excellent care from for-profits, and I have met families who didn't get ideal care from nonprofits. In some parts of the country, most hospice care is for-profit.

Kenen also wrote an article for the AARP Bulletin that discusses hospice care and the changes the hospice care industry has undergone over the years.

Hospice generally earns enviable satisfaction rates. Hospices’ own surveys have found that more than 98 percent of bereaved families would recommend hospice to a family member or friend with a terminal illness. Yet, not every case goes smoothly. Those same surveys have also cited problems: lapses in pain control, for instance, or unwanted hospitalizations; such errors are particularly traumatic when a loved one is dying. “It boils down to patient care,” said Claire Tehan, a California-based consultant who founded TrinityCare, a well-regarded Los Angeles hospice. “There is hospice care being delivered that doesn’t meet the high standards that we would hope everyone would achieve.”

So, like other segments of U.S. health care, hospice has embarked on a major drive to improve and evaluate the quality of the medical, psychological and spiritual care it provides. Some of the industry’s increased emphasis on quality comes in response to new regulations issued by Medicare, which pays nearly 84 percent of all hospice fees. The new rules, which took effect in December, require hospices to keep better records and do a better, faster job of providing services such as pain control, home assistance, respite care and social worker assessment.

But even months before the new rules were issued, many hospices had begun exploring ways to improve services. The major trade industry groups held seminars and conferences where hospices could learn from one another. One hospice in Charlotte, N.C., found that it could speed up admissions and cut response time by improving staff training and increasing phone and fax coverage in off-hours. Another, in Illinois, learned how to minimize distress and confusion for families by explaining clearly what to expect when their loved one was in the final phase of dying.

Meanwhile, HealthBeat blog contributed two posts last week about the MedPAC recommendations, taking a more black and white approach to the issue of for profit and non-profit hospice providers.

Dying in Hospice Care

Last week, the Washington Post published a hospitalist’s view of dying in America. Dr. Bowron writes, “If we can be honest and admit that we have no choice about dying, then the only thing we do have a say in are the circumstances.” Yet he does not mention that one-third of those who die in the United States now exercise their say by choosing hospice care, which seeks not to prolong life artificially, but to treat pain and symptoms through a multidisciplinary approach.

The Post printed two letters in response to Dr. Bowron’s piece, one from a hospice medical director, and another from a son whose father died in hospice care in Britain.

South Carolina Medicaid Hospice Benefit May Return

The Associate Press reports that the South Carolina House has voted to restore funding for the Medicaid hospice benefit in the state.

The House has given key approval to a resolution forcing the state's Medicaid agency to restore money cut from a hospice care program.

The chamber votes 113-0 on second reading vote Thursday.

At a Wednesday hearing, Department of Health and Human Services Director Emma Forkner told House members she had to make gut-wrenching decisions after losing $137 million in state funds as $1 billion was cut from the budget.

That included eliminating the $1.5 million hospice program for Medicaid-only patients.

Renee Martin is a spokeswoman for Harmony Care Hospice and said care givers are delighted the program may not get cut. She said nobody should be forced to die in a hospital.

The Senate should get the bill in two weeks.

Lawsuits Filed Over HHS 'Conscience Rule'

The Department of Health and Human Services issued a new regulation, known as the 'conscience rule' that protects healthcare workers who object to providing care on religious or moral grounds. The regulation is due to become effective on Jan. 20. Now, three lawsuits have been filed to block the regulation taking effect, in part because of concern that the regulation may effect the delivery of end-of-life care. From the Washington Post:

Seven states and two family-planning groups yesterday asked a federal court to block a controversial new federal regulation that protects health workers who refuse to provide care that they find objectionable.

In three lawsuits filed in U.S. District Court in Connecticut, the states and groups sought an immediate court order preventing the regulation from going into effect Tuesday and a permanent decision voiding the rule.

. . .

Women's health advocates, family-planning proponents, abortion rights activists and others say it will create a major obstacle to providing many health services, including abortion, emergency contraception for rape victims, family planning, infertility treatment and end-of-life care, as well as possibly a range of scientific research.

Interview with Sandy Chen Stokes of the Chinese American Coalition for Compassionate Care

Sandy Chen Stokes, RN, MSN, a geriatric nurse specialist and public health nurse, is the founder and Executive Director of the Chinese American Coalition for Compassionate Care (CACCC). Sandy has promoted the use of the Advance Health Care Directive and other EOL issues in the Chinese media and at conferences around the nation. In 2001, she arranged to have Bill Moyers’ “Finding Our Way” series translated into Chinese and published in the World Journal.

Sandy served on the Access Diversity Advisory Council of the National Hospice and Palliative Care Organization and was American Cancer Society-California Chinese Unit President for 2000-2001. Sandy continues to serve on the American Cancer Society California Division’s Asian American /Pacific Islander Team and the Hospice of the Valley Advisory Board.

Q. What experiences helped you to become interested in educating Chinese Americans about end-of-life care options?

A. My involvement started with a personal experience with my father in 1999. He lived in Taiwan and had cancer, and had developed pneumonia. I am a nurse, and so once I arrived in Taiwan, I spoke with my father’s doctor about options for my father, including a Do Not Resuscitate (DNR) order. The doctor looked at me and laughed, saying, “You must live in the United States!” I did not realize that, in Taiwan, a DNR order was illegal at that time. My father ultimately was placed in a critical care unit, where he stayed for almost a year before he died.

At the time I was working with Chinese American seniors with Catholic Charities in the San Jose area. I realized that families were not talking about issues around end-of-life care and didn’t realize they had better options. My father did not have a choice, but Chinese Americans in the U.S. do have a choice. What was lacking was adequate information to help them make good choices.

Q. Much of your work has focused on providing appropriate information around diagnosis and advance directives. Can you talk about why it’s important to start with those discussions?

A. In 2002, I conducted focus groups in Mandarin and Cantonese for the California Coalition for Compassionate Care. The majority reported that they indeed did not have adequate information for making better decisions. One of the most important discoveries was that a majority also stated that, when thinking about past experiences with family members who had died, they definitely would have made different choices if information had been available In Chinese. This realization has helped us to continue this important work through the CACCC.

Q. What are some of the major challenges that you have found in educating the Chinese American community about these issues?

A. A very basic issue of communication is the challenge of linguistics, of language. These challenges exist both in spoken communication and written communication between physicians and, families and patients. And problems with communication can often lead to mistrust. Families may feel that physicians do not understand Chinese American culture or do not share information in a culturally sensitive way. On the other hand, some families may not understand the situation their loved one is facing. Even the “culture” of a hospital can be a greatly unfamiliar environment. Everyone speaks English, all of the signage and the brochures are in English. Even hospital policies about visiting hours and how many visitors in a room may be in conflict with Chinese culture and values.

Another important issue is that family members should not have to serve as interpreters in a medical situation. One of the reasons for this is that they will often change the diagnosis and prognosis the doctor explains to them to prevent the patient from fear.

Another area that we’ve begun to address is generational issues. Each generation may look at end-of-life care very differently. InChinese culture, we have great respect for our elders. Younger family members may be better informed about healthcare choices, yet suppress their voices out of respect. Grandma may be the patient but is often not made aware of the options she has to make an informed decision. In Chinese culture, the family acts as a “unit”; many healthcare professionals do not understand that decisions are made by family members, often the oldest son, not the patient.

I spoke earlier about our findings that people would have made different decisions about end-of-life treatment if they had had more information. It is also very typical that Chinese Americans my age say they would still seek aggressive treatment for their parents. Yet, when asked if they would want the same for themselves, they say no, they would make very different decisions. Younger people may be concerned that their community will judge them harshly if they do not advocate for aggressive treatment for a dying parent.

Q. Hospice is often described as the “gold standard” of end-of-life care, yet the majority of people served by hospice are white. What barriers exist for Chinese Americans in accepting hospice care, and what can hospice professionals learn from your work to reach out to this community?

A. I give great credit to the hospice and palliative care movement for encouraging and advancing these discussions. I think, in some ways, that hospice for minorities is where hospice care was with the white community in the 70s. I remember when I first started looking at NHCPO statistics about hospice usage in 2002—they didn’t show usage by the Asian community, because there weren’t enough to even be a statistic! So while the numbers are small now, I’m always pleased to see that we are finally on the chart.

A number of challenges do exist in bringing hospice to the Chinese American community. A high number of Chinese Americans do not want to die at home; this is actually a change from past generations. Another challenge is the difficulty in finding an adequate number of native speakers to provide care and act as interpreters. Financially, hospices cannot be expected to be fully staffed by professionals who are bi-lingual. But most hospices rely greatly on volunteers, and finding volunteers who can communicate with Chinese patients is a genuine challenge. And for many Chinese sharing deeply personal and emotional issues with “strangers” is not something that they are comfortable with.

Q. What advantages have you found in developing the CACCC as a true coalition?

A. I have to say that it has exceeded my expectations. Currently we have over 60 organizations signed up as partners. Our relationship with the local American Cancer Society California Chinese Unit and the Alzheimer’s Association is a great example of why this works well. While end-of-life issues are not their focus, there is room for partnership. And there are financial benefits for these organizations as well. We can each rely on each other to provide important information, without having to devote extra staff time, so the burden does not fall all on one organization. In addition to the work we do locally, our presentations throughout the country and our website (www.caccc-usa.org) allows the CACCC to help families in many geographic regions.

Q. You will be a participant on HFA’s upcoming teleconference on “Diversity and End-of-Life Care” on April 29. One stated goal of the program is to “discuss the knowledge, sensitivities, and skills necessary to work with culturally-diverse populations in end-of-life care.” What are some of the tools that you have found to be useful in your work with healthcare professionals?

A. An essential component is producing appropriate materials. And I like to see that training materials are not just translated from English into Chinese, but that are actually written for Chinese speakers. And just as these discussions need to start early, it’s important to have materials that cover not just hospice, but topics such as Advance Directive and pain management.

We spoke about it already, but it is impossible to underestimate how powerful the issue of language is. Even among Chinese Americans in the US, there are four or five different translations or interpretations of basic hospice and end-of-life care terms. Part of the work of the CACCC is to unify the terminology. This can be a very challenging and frustrating process; one professional told me she has struggled with how to translate the title on her business card!

The CACCC worked with NHCPO to produce a good resource on Chinese Outreach (PDF).

Another recommendation that I make is that, in doing “outreach”, hospices should go to the community and partner—it’s not just about “reaching out” and hoping you connect. Find out who the “gatekeeper” is in each particular community, who has real access and real connections.

One issue we have not yet discussed, but is so important, is the issue of religion and spirituality. The majority of hospice patients who have strong spiritual beliefs are most likely to be Protestant; but a high percentage of Chinese Americans are Buddhist or Taoist. Hospice professionals must ask themselves—does our hospice have the ability to provide appropriate support for any spiritual persuasion? Again, I don’t think it’s necessary to have all beliefs or cultures represented on staff. But organizations need to know what resources are available, and how to readily access them when necessary.

See Ms. Chen Stokes discuss HFA's 2009 teleconference on Diversity and End-of-Life Care below.

Living Wills Have Limitations

The AM News (from the American Medical Association) published an article about the limitations of living wills and advance directives. Also discussed are the use of a health care proxy, to determine a patient's wishes.

The American Medical Association strongly supports advance directives and durable power of attorney for health care.

About 40% of hospitalized patients have some diminished decision-making capacity.

The durable power directive does not set out specific instructions about ventilation, artificial hydration and so on, but instead requires only that patients name loved ones they trust to make treatment decisions, should they become incapacitated.

The American Bar Assn.'s Commission on Legal Problems of the Elderly says "most people should have a health care power of attorney" and lists as a "myth" the notion that "everyone should have a living will."

Rebecca Dresser, professor of law and medical ethics at Washington University in Missouri, said that designating a health care proxy is the best of a bad set of choices.

"Having someone you trust, maybe a couple of people, at the bedside who know you and can deal with the up-to-date situation, it's not ideal," Dresser said. "Ideally, we'd have the patient tell us, but since we often can't have that, then that's probably the next best alternative that's workable."

Bill Colby at the Center for Practical Bioethics writes about the Center's goals for improving end-of-life discussions.

I interviewed Missouri legislators in the 1980s as potential trial witnesses for the Nancy Cruzan case. Those legislators thought that when they passed the 1985 Missouri living will law, they were “solving” cases like Nancy’s. Lawmakers who passed the 1990 federal Patient Self-Determination Act thought the same thing.

But laws by their very nature have limits. I think the focus of the AMN article is right. We need to simplify the “legal part” at the end-of-life. And we need to urge people to do a much better job of talking to one another.

We will be digging for some creative solutions at this Center to do just that in the months ahead. Stay tuned.

The Health Beat blog's Maggie Mahar also writes about the AMNews article.

Caregivers - Start the New Year Off Right By Reviewing Medications

Two blogs suggest the beginning of a new year is a good time for caregivers to review a family member's medications. In Caring Currents, Paula Spencer suggests asking three questions:

So every week you dutifully separate all those pills into their proper compartments in the pill box of the person you look after: Monday, Tuesday, Wednesday.... Maybe you fill two boxes, one marked "AM" and one for "PM."

1. Are you sure what each of those medications is for?
2. Are you absolutely sure each one is even necessary?
3. And if they are all necessary, have you made sure they're safe to take in combination?

And Carol Bradley Bursack, who writes at OurAlzheimers.com and Minding Your Elders, also cautions to check for medication interactions.

I can't overstress the number of times I've suggested to people that they take all of the medications their elder ingests to one pharmacy and ask the pharmacist to put the medication names into the computer. The drug store's computer system should be able to pick up interactions. Ask questions. Pharmacists are trained in drugs. It's what they do. They are likely your greatest resource for drug safety information.

End-of-Life Care Membership Organizations React to MedPAC Hospice Recommendations

Last fall, the Medicare Payment Advisory Commission (MedPAC) released draft recommendations to the Centers for Medicaid & Medicare Services (CMS) for modifications in the payment system, accountability measures, and data collection of the Medicare hospice benefit. The final recommendations are expected shortly. Yesterday, several national end-of-life care organizations that are concerned with legislative matters released a consensus statement on the protection of the Medicare hospice benefit.

This joint statement addresses MedPAC's draft recommendations directly.

Over the past several years, MedPAC has undertaken a review of the Medicare hospice benefit. While specific reforms and enhanced accountability measures are laudable and should be encouraged, those changes should be framed in the context of a comprehensive review of the various and complex components of end of life care and how the continuum of care can be expanded to increase access for patients and families. Included in this comprehensive review of hospice should be payment methodologies, fiscal constraints review, alternative eligibility criteria, and testing of new models of care, as well as any number of other issues. The hospice community is committed to work toward these goals.

Guiding this review ought to be several clear principles. Among them are:

• Advancing hospice and palliative care providers as the recognized providers of end of life care.


• Preserving and enhancing the Medicare Hospice Benefit.


• Recognizing high quality as the standard to which all providers must subscribe


• Ensuring accountability through transparency and fair regulatory scrutiny


• Promoting increased access through expansion and collaboration

More on the PACE Program

The New Old Age blog did a post today about the PACE program (program of all-inclusive care for the elderly.) Jane Gross discusses the program's history and what it provides, including a visit to one PACE center in the Bronx. According to the National PACE Association, there are 61 PACE programs (this document includes some pre-PACE sites) offered in 29 states as of 2008. To be cared for at a PACE program, an individual 55 or older and eligible under state regulations for nursing home placement. The program is often paid through Medicare or Medicaid.

At the end of her post, Gross brings up a sensitive subject that is receiving comments on the blog:

After a day at the P.A.C.E. center, my only reservation is whether a middle-class person — say, my mother — would have given a program like this a chance or been put off by the race, ethnicity or cultural differences of the other clients. She was by no means a prejudiced woman, but the older she got the more her comfort level depended on being among people of similar background.

I was embarrassed to raise this question. But, P.A.C.E. officials told me, my mother’s resistance would not have been unusual or viewed as a sign of bad character. Shared experience matters at this time of life, and P.A.C.E. centers tend to reflect the neighborhoods where they are located. My mother might have done well at C.C.M.’s Westchester County center, in White Plains, N.Y., or a center in Amityville on Long Island that is soon to open.

Also see this article we posted in September 2008 about a PACE program in North Dakota from The Dickinson Press.

Training Available to Facilitate Suicide Loss Support Groups

The American Foundation for Suicide Prevention (AFSP) is conducting a training program to help survivors of suicide loss learn the "how-to's" of creating and facilitating a support group. The training will be held in Denver, CO, February 5-6, 2009 and the registration deadline is January 14.

Hospices offer a wide-variety of bereavement support groups. These groups often include non-hospice families, such as those whose loved one died by suicide. A training program such as the one offered by AFSP could be useful for hospice professionals interested in developing a suicide loss support group in their community. AFSP will also conduct trainings in Dallas, San Francisco, and Providence, RI, later this year.

Cultural-Specific Music Therapy

Pallimed's Case Conferences blog recently posted a case about using cultural-specific music therapy as part of a patient's palliative care program. Intern Erin Hedden writes about the case of Ms. Z:

Since Ms. Z was a Colombian immigrant, there were many times that she had family members and friends with her to both support her and translate some of the more difficult conversations that were in English. Though this author did know rudimentary Spanish, and did successfully implement short phrases, it was the music that became the common language throughout each session.

The first music therapy session was met with much enthusiasm and laughter from Ms. Z’s family and friends. Ms. Z was visibly anxious and nervous as she sat in the corner, but as she began to watch those around her enjoying themselves, her face softened and she smiled from behind her oxygen mask. The two attending interns closed the session having played some of the requested music, but with the momentous assignment to learn many more songs. Countless hours were spent learning songs by one of her favorite artists, Juanes, who is famous in Colombia and other South American and Spanish-speaking countries.

The second session was filled with a myriad of their favorite Spanish songs. They sang every song along with the attending interns, laughing and crying at the same time. Ms. Z was visibly relaxed and at peace. She continued to enjoy music therapy after she got her double lung transplant. Through the implementation of music therapy, her anxious and depressive symptoms were significantly diminished through singing, the use of percussion instruments, and by using her preference of cultural-specific music.

HFA is taking special note of the role culture plays in end-of-life care as part of our 2009 Year Initiative. HFA's national teleconference on Diversity and End-of-Life Care will focus on ways of understanding diversity and how cultural histories, traditions and beliefs can affect end of life care. The program can be viewed at over 1,300 sites across the country, and is seen by more than 125,000 viewers. Find a site to attend in your community or register to host a site here.

Hospices Offering Bereavement Support in Your Community

This video is from a local news station in Rhode Island. It highlights the many varieties of bereavement services hospices often offer that are available to members of the community. In this story, Home and Hospice Care of Rhode Island offers support groups for young widows, and parents losing adult children, among others.

To see if your local hospice offers a bereavement support group near you, try using our Hospice Directory to find and contact a hospice in your community.

CMS Launches Nursing Home Rating System

The Centers for Medicare & Medicaid Services launched an updated website for nursing home ratings last month that is designed to make it easier for to choose a nursing home. The rankings are based on a five-star system. There have been concerns about the limits of the new ranking system. Read more about what geriatric experts and organizations that support the aging have to say from Health Day News.

Which States Use POLST?

The ABA Commission on Law and Aging put together a document outlining initiatives involving Physician Orders for Life-Sustaining Treatment (POLST) in September 2008. Posted on the Elder Law Answers website, this document tracks nine states efforts to implement POLST measures.

Medicaid Hospice Cuts Considered in Florida

South Carolina is eliminating their coverage of hospice services under its Medicaid program. Florida is considering eliminating its coverage as well. Here is a press release from Florida Hospices and Palliative Care (FHPC) on a study they commissioned showing cutting hospice services will cost the state more than keeping the service.