Friday, February 27, 2009

Medicaid Hospice Benefit Restored in South Carolina

South Carolina's Department of Health and Human Services (DHHS) had planned to cut funding for the Medicaid Hospice Benefit on February 28. Following a vote in the South Carolina House.
The cut, expected to save the state $1.5 million through June 30, would have affected about 125 hospice patients funded solely through Medicaid -- dying patients too young to qualify for Medicare, Stensland said. The number represents about 6 percent of hospice patients statewide.

The agency's planned Feb. 1 elimination of the program for Medicaid-only patients had been put on a 30-day hold.

Officials decided to take away the ax completely, knowing legislators wanted them to keep the program running and that federal stimulus money could help them do that. The agency also lifted a Dec. 31 freeze on accepting new patients in the program, he said.

Last month, the House unanimously passed a resolution forcing the agency to restore the money. On Tuesday, Sen. Thomas Alexander, R-Walhalla, asked agency officials to find the money somewhere.

Read more from the Associated Press.

Wednesday, February 25, 2009

Making End-of-Life Wishes More Transparent

Jane E. Brody at The New York Times writes about living wills and New York's Medical Orders for Life-Sustaining Treatment (MOLST) forms. (The forms, known as POLST in some other states, provide treatment clarification for medical personnel.) She reports on a study that shows confusion about how to interpret living wills outside a hospital setting.
Now a new study confirms that confusion about interpreting living wills prevails in prehospital settings, as well. The study, conducted among 150 emergency medical technicians and paramedics by a team at Hamot Medical Center in Erie, Pa., and published this month in The Journal of Emergency Medicine, found that concern for patient safety can collide with confusion about the intent of living wills and do-not-resuscitate orders.

This article from the Staten Island Advance explains more about MOLST orders in New York, as well as the role of living wills.

Children Caregivers

This article discusses the growing number of children in the United States who are providing care for a disabled relative or aging grandparent. The accompanying video segment shows one program, the Caregiving Youth Project in Florida, which offers weekend camps to give children a respite from their caregiving duties, as well as teaching them caregiving skills.

A blogger at MojoMom reacts to the article and urges more conversation about the role of children caregivers.

Monday, February 23, 2009

Hospice Care and the Stimulus Bill

The American Recovery and Reinvestment Act of 2009 (H.R. 1) which was signed into law February 17, included a moratorium through Oct 1, 2009 on changes to hospice payments under the Medicare hospice benefit. In 2008, a regulation issued by the Centers for Medicare & Medicaid Services (CMS) changed part of the formula used to reimburse hospices for the care they provided, eliminating what is known as the budget neutrality adjustment factor (BNAF). H.R. 1 will put that change on hold for now.

Read more from the Future of Aging blog and Growthhouse.

Friday, February 20, 2009

Mourning a Public Tragedy in Australia

This Sunday, 50,000 people are expected to attend a memorial service for the victims of the bushfires in Victoria, Australia. Thousands more will be watching the National Day of Mourning on television and across other sites.

Victorian Premier John Brumby stated that the service ". . . is a wonderful way to show our mourning, to show our grief, to show our respect but also to express our thanks, our heartfelt thanks to all of those who've done so much to help rebuild in these communities."

In 2003, HFA focused its annual teleconference on Coping with Public Tragedy. Here is an excerpt of one chapter, "What Makes a Tragedy Public" by Kenneth J. Doka, from the companion book, Living with Grief: Coping with Public Tragedy.

One of the clichés of public tragedy is that life will never be the same after one. For some individuals, life does not change; they resume the basic rhythms of their lives as the immediacy of the tragedy recedes. But for others, life really does change. Those immediately affected must cope with their losses and grief. For them, basic assumptions of life may be shattered. The world no longer seems benign. This may lead to a sense of anxiety and fear. Individuals may also experience a spiritual crisis. They may feel that their lives now have no purpose or goals, or that their constructs-the ways they view the world -are bankrupt, that their spirituality is threatened. For many survivors, tragedy leaves a terrible imprint. On a larger scale, some tragedies can fracture a community, creating conflict and division. This, too, can contribute to an individual's sense of loss (Eriksen, 1976).

Yet for others, this may lead to attempts to reconstruct a sense of order, to rebuild shattered assumptions. Sometimes these attempts themselves are illusionary. In an earlier book, Jack Gordon and I (2000) described the phenomenon of "resonating trauma," in which people focus their generalized anxiety on a specific "expected" event. For example, following 9/11, rumors abounded that there would be a major attack on a shopping mall on October 31. When these attacks failed to materialize, persons could once again feel safe.

Other attempts to reconstruct may be far more resilient. In the aftermath of a tragedy, some persons may experience considerable growth. They may have a changed sense of self-seeing themselves now as stronger. They may reprioritize relationships, developing and enhancing ties with others. Individuals may experience a sense of existential and spiritual growth (Calhoun & Tedeschi, 2001). They may find new purposes, goals, and meanings, develop more resilient constructs, and even find secondary gains in their experience of loss such as new skills or insights that mitigate grief (Davis & Nlen-Hocksima, 2001).

Collectively, too, public tragedy can strengthen even as it injures. There may be a new collective unity and sense of purpose. In time, tragedies may lead to collective actions that create new policies and change the social order. The horror of the Triangle Shirt Factory fire not only shocked a nation but also created support for legislation to improve occupational safety.

Grief, collective or individual, can generate growth. This process takes time, however, and that is why hospices, community mental health centers, and funeral grief programs are so critical. They remain in the community long after disaster relief agencies have left, donations have ceased, and public attention has turned to a new tragedy.

Wednesday, February 18, 2009

Care Decisions at the End of Life

On Monday, The Boston Globe featured an article by Kay Lazar which discussed what can happen when conflicts arise between a patients end-of-life care wishes and the desires of their families.
About four years ago, Beth Israel Deaconess established a policy for handling cases when doctors and patients - or patients' families - disagree about stopping treatment. The policy sets up a methodical appeal, hearing and review process when a doctor concludes further treatment would be ineffective or harmful, and a patient or family feels otherwise. The process includes review by a committee with a social worker, clergy member, and doctors not involved with the case.

If the committee decides further treatment is ineffective and/or harmful, the patient or family is offered the opportunity to seek transfer to a facility willing to provide that treatment. They also are advised that they can seek legal intervention.

Given how emotionally charged - and intertwined with family dynamics - the decision often is, "sometimes we have to help the patient figure out what the patient really wants," said Dr. Lachlan Forrow, director of Beth Israel's palliative care and ethics programs. Forrow helped write the policy.

Lazar points out that many patients do not make their end-of-life wishes known to their family.
A 2005 Massachusetts End of Life Care Survey found that 83 percent of those questioned said they didn't want to be a burden on loved ones at the end of their lives. But only about half, 53 percent, said they have spoken with their spouse or partner about their wishes for end of life care, and 57 percent indicated they had spoken with family. A mere 10 percent had discussed the issue with their primary care physician.

You can view the comments to the article.

Upcoming Meetings

  • American Academy of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA) are hosting their Annual Assembly March 25-28 in Austin, TX. Pallimed has posted a few previews of the assembly meetings.
  • On May 8, the Cunniff-Dixon Foundation and the New York Academy of Medicine are hosting a symposium on "The Art of Medicine at the End of Life " in New York. Topics will include spiritual issues, medico-legal issues, ethical and policy challenges, and when and how to transition to hospice and palliative care.

Morphine Recall Expanded

ETHEX Corp has issued the following recall :

The expanded recall includes:
  • Morphine Sulfate Extended-Release Tablets 15mg, 30mg & 60mg (All Strengths)
  • Morphine Sulfate Immediate-Release Tablets 15mg & 30 mg (All Strengths)
  • Dextroamphetamine Sulfate Tablets 5mg & 10mg (All Strengths)
  • Isosorbide Mononitrate Extended-Release Tablets 30mg, 60mg & 120mg (All Strengths)
  • Propafenone HCl Tablets 150mg, 225mg & 300 mg (All Strengths)
The recall of these drugs had previously been issued at the wholesale level, but is now being expanded to the retail level. ETHEX is taking this action as a precautionary measure, because the products may have been manufactured under conditions that did not sufficiently comply with the Food & Drug Administration’s current Good Manufacturing Practice (cGMP) regulations.

Monday, February 16, 2009

More Ideas on Making Memory Bears

We have posted before about the popularity of creating a memory object from a loved one’s clothing to offer comfort to a bereaved family. In this video clip from HFA’s 2007 Living With Grief teleconference, a hospice volunteer who makes the bears for bereaved families discusses their significance. In other cases, hospices may help family members to make the bears themselves. Karen Alkema, the bereavement care coordinator at Hospice at Home in Buchanan, MI shared a bit about her hospice’s newest memory bear program:
We have piloted a memory bear project but ours is structured differently. We have the bereaved sew their bear by hand. We used a free, simple pattern from the internet for a small bear and modified the instructions slightly.

We have structured the program to last three weeks meeting each week for 1 ½ hours. The first meeting we cut out the pattern pieces and begin sewing the outside. We show those who have no sewing experience how to do a simple backstitch around the perimeter of the piece, leaving an opening for stuffing the piece. A strength of having three sessions is that those who may sew at a slower pace can catch up during the week prior to the next session. During the second session we stuff the pieces, sew up the holes used to stuff and they begin to attach the pieces to the body. Again, any slower sewers can catch up during the week. At the third session, we decorate the bears. Participants can add eyes, nose and mouth as well as tails, hearts and anything else meaningful. We complete the third session with a closing ceremony.

It was a wonderful program. We have only offered the program to adults but older children could definitely complete the simple sewing of the project. We have volunteers available to provide individual instruction and assist the participants.

Friday, February 13, 2009

Involving Adolescents in End-of-Life Care Discussions

February's Pediatrics journal features a study by Children's National psychologist Maureen Lyon, PhD, and others who studied the use of a "professionally facilitated program to help adolescents living with HIV work with their families to plan ahead for managing their disease long term and include plans for adverse events that might require end-of-life, or palliative care, decisions." These types of programs were shown to increase the level of agreement between the parents and children regarding their medical treatment, and helped facilitate better communication between parents and their children.

Solving Family Caregiving Disputes

Caring.com's Paula Spencer writes about the use of an elder mediator to guide family members through disputes over their loved one's care. She lists a range of advantages to using a professional mediator, from lowering stress and developing a plan, to saving money in the long run if court costs can be avoided. She writes:
If you're like me, the very word "mediator" may at first ring complicated – and expensive. But a closer look convinces me that elder mediators are actually one of the many unsung heroes of elder-care conundrums. They know how to get competing viewpoints aired in a constructive way and move past family dynamics (like, "once the baby, always the baby," even if you're 50-plus). Critically, they also understand the unique issues of aging.

Palliative Care Referrals

The Journal of the American Medical Association recently published an article written by Joan Teno, MD, a professor of community health and medicine at the Warren Alpert Medical School of Brown University, and Stephen Connor, PhD, consultant for research and international development at National Hospice and Palliative Care Organization (NHPCO) titled "Referring a Patient and Family to High-Quality Palliative Care at the Close of Life." The article is meant to aid physicians and families making end-of-life care decisions. The authors discuss hospice and palliative care options. There are more than1,400 hospital-based palliative care programs and 4,700 hospice programs across the U.S. Learn more from this NHPCO press release.

Thursday, February 12, 2009

MedPAC's January Meeting Transcript: Reforming Medicare's Hospice Benefit

The transcript of the January 9 MedPAC (Medicare Payment Advisory Commission) is available here (PDF). Discussion of recommendations for changes to Medicare's hospice benefit begin on p. 257. We have posted the recommendations that were proposed at the November meeting previously. These recommendations were slightly modified and voted on at the January meeting. Some highlights:

The current Medicare payment system was described as a linear system, MedPAC is proposing a new system that would resemble U-shaped curve, with higher rates paid at the beginning and end of a hospice episode, which would more accurately reflect hospice's costs. The recommendation was discussed in detail and roughly reads: the Congress should direct the Secretary to change the Medicare payment system for hospice to: relatively higher payments per day at the beginning of the episode and relatively lower payments per day as the length of the episode increases; include a payment system for the higher costs associated with patient death at the end of episode; implement the payment system changes in 2013 with a brief transitional period.

They state the payment changes should be implemented in a budget neutral manner, considerable discussion was later given to whether starting from a budget neutral position was desired.

Another recommendation addressed the need for greater accountability. This recommendation requires a hospice physician or advanced practice nurse to visit the patient for recertification and to include a brief narrative describing clinical basis for patient's prognosis. Stays exceeding 180 days would be medically reviewed when hospice stays longer than 180 days make up 40 percent or more of a hospices cases. (There is discussion later in the transcript that advises leaving the question of who conducts the review vague for now, also it would be an external review.)

The final recommendation combined two others on the need for greater data collection and read:

the Secretary should collect additional data on hospice care and improve the quality of all data collected to facilitate the management of the hospice benefit. Additional data should be collected from claims as a condition of payment and from hospice cost reports.

After the modified recommendations were presented by MedPAC, there was discussion about the policy goals of the recommendations. The recommendations were then voted on and will be included in the March report, after the March 12-13 meeting.

A slide presentation shown at the meeting is also available (PDF).

Wednesday, February 11, 2009

Hospice Foundation of America Awards $25,000 To Support Grieving Children and Adolescents

Hospice Foundation of America (HFA) has announced the recipients of its newest grants program. Grants have been awarded to five organizations that support children and adolescents who are grieving. Priority was given to organizations that offer innovative programming, as well as programs that focus on outreach to diverse populations.

“In these challenging economic times, HFA is pleased to be able to offer support to these programs that are doing such vital work to support grieving young people,” said Amy Tucci, President and CEO of Hospice Foundation of America. “More than 300 organizations submitted requests for this new funding endeavor, and our grants panel was impressed by the excellent programs across the country that exist to help children and adolescents at this critical time in their lives.”

A primary mission of Hospice Foundation of America is to provide the most current thinking and information on grief and bereavement to both healthcare professionals and consumers. HFA accomplishes this mission through a wide range of educational programs, including its annual National Bereavement Teleconference, as well as publications and online information.

The grant recipients were selected by a panel of well-known experts in children's bereavement, including David Crenshaw, PhD; Charles Corr, PhD; Kenneth Doka, PhD, and Rita Milburn-Dobson, RN.

The five grant awardees for 2009 are:
  • Gerard's House, Santa Fe, NM: in support of its Supporting Grieving Native American Youth program and summer activities for bereaved children and adolescents
  • Hospice of Siouxland, Sioux City, IA: for the Bereavement Diversity Outreach Program, to improve services to bereaved children and adolescents raised in homes where English is a second language
  • T.A.P.S (Tragedy Assistance Program for Survivors), Washington, DC: for play therapy supplies and other materials for 18 Good Grief Camps for Young Survivors programs for military children
  • Hospice of the Upstate, Anderson, SC: to introduce Play Therapy curriculum and materials into its children’s bereavement programs
  • Calvary Hospital, Bronx, NY: in support of Camp Courageous, a week-long bereavement camp for children and adolescents, as well as ongoing bereavement support groups.
Read more information on these organizations here.

For more information, contact Lisa Veglahn, at lveglahn@hospicefoundation.org

Monday, February 9, 2009

Round-up in Hospice and Palliative Care - February 9

  • Pallimed hosts the first edition of Palliative Care Grand Rounds. This is a "monthly blog carnival bringing you the best and most interesting blog posts about hospice, palliative care, death and dying, grief, quality of life, communication in the medical arena, and anything else that strikes the fancy of the host that month."

  • A blog written by Judi Chamberlin that is worth reading, Life as a hospice patient. She began the blog in December 2008, after enrolling in hospice a week earlier. She writes in one post, "What hospice means to me,"
    Since I've been a hospice patient, I have experienced genuine peace of mind. I feel confident that I will be taken care of, in accordance with my wishes. There will be no more trips to the hospital, trips that, with few exceptions, accomplished very little. There will be no more needles or invasive procedures. My comfort is the center of hospice philosophy. This is totally in line with the model of the mental health system we've been promoting all these years, with very limited success.

  • An APPEAL (A Progressive Palliative Care Educational Curriculum for the Care of African Americans at Life’s End) training program is being held March 6-7 in Atlanta, Georgia. The program is designed for those working with African American patients and families facing serious illness in hospitals, hospices, outpatient clinics, nursing homes and office-based settings and was developed at the Duke Institute on Care at the End of Life (ICEOL), where HFA 2009 teleconference panelist Richard Payne, M.D. serves as director.

  • The Centers for Medicare & Medicaid Services (CMS) is holding the next Home Health, Hospice & DME Open Door Forum on February 18, 2009. See the Medicare Update blog for times and instructions to participate.

  • A Vermont legislative study committee found that Vermont health care providers need better education about end-of life care, pain management and palliative care. Read more on Vermont's Public Radio website.

  • End-of-life care for pediatric cancer patients can vary greatly according to a study published in the journal, Pediatric Blood & Cancer. Researchers examined the cases of 1,466 subjects treated at 33 hospitals between 2001 and 2005, using data from the Pediatric Health Information System.

  • A new coalition addressing eldercare was announced last week, the Eldercare Workforce Alliance (EWA). The group consists of 25 organizations representing older adults and the eldercare workforce and aims to address "the critical shortage of health care providers and caregivers who are adequately prepared to meet the unique care needs of older adults" and "supports programs to increase workforce capacity, strengthen workers' competencies, and improve coordination of care."

Thursday, February 5, 2009

More on Vigil Companion Programs

Last summer, Hospice and Caregiving blog contributor Vince Chiles wrote about the vigil companion program, "No One Dies Alone ." Yesterday, Advance Nursing magazine featured an article on the program , including an interview with it's founder, Sandra Clarke, RN, a nursing supervisor at Sacred Heart Medical Center University District, Eugene, OR. Ms. Clarke started the program in 2001, and it has since been adopted by hospitals around the country.
Jennifer Gentry, APRN-BC, PCM, a nurse with the Palliative Care Team at Duke University Medical Center, Durham, NC, is one of many nurses who support the NODA program at her facility.

"It's very distressing to nurses when there's no one to be with their dying patients, so this type of program is very welcome on the nursing units," she said. "As a palliative care referral center, we care for so many patients whose families just can't be there at the bedside. The NODA program allows us to reassure those family members that someone will be with their loved one when the end is near."

Gentry provides some of the training that prepares NODA volunteers for events that occur at the end of life.

"Some of the volunteers are Duke University students and others have had personal experiences with someone they love dying from cancer or other causes," she said. "The majority are lay people without a healthcare background. I teach them about the physical things they might hear, feel or see at the patient's bedside, letting them know what's normal and what they should get the nurse for. It's a lot for lay volunteers to get used to the culture of the hospital, as well as the issues around death and dying."

Discuss Hospice Care Early

The Ithaca Journal included an article by Bob Riter, the Associate Director of the Cancer Resource Center of the Finger Lakes, who writes about when the topic of hospice care should be discussed with advanced stage cancer patients.
It is a difficult topic to discuss and that contributes to the fact that many people receive hospice care only during their final few days rather than their final few months. That's too bad because hospice is much more about living than it is about dying. When I'm ready for hospice, I want to be there long enough to enjoy the entire vacation, not just the final landing.

My advice to people is to contact their local hospice before they need it. I compare it to high school sophomores and juniors beginning to explore colleges. Visiting a college campus does not commit a person to attend that college or even to apply there. It just makes one familiar with the options that are available when the time is right.

Another advantage of contacting hospice early is having the opportunity to discuss those difficult end-of-life issues in the best possible setting. It's so much better to have these discussions before there's a crisis. Social workers and other hospice staff members can gently ask the right questions so that the patient's wishes are clear and heard by everyone. Again, this sets nothing in stone but it does provide a framework for making decisions when they have to be made at some point in the future.

Tuesday, February 3, 2009

Racial and Ethnic Differences in End-of-Life Care in Cancer Patients

A study from the January 2009 issue of the Journal of the American Geriatrics Society looked at 41,000 older Americans on Medicare with advance-stage cancer to see how they varied in use of hospice and high-intensity care. The researchers found that white and Hispanic patients were more likely to use hospice than black or Asian patients. Blacks and Asians were also more likely to die in the hospital.

The research was led by Dr. Alexander K. Smith of Beth Israel Deaconess Medical Center in Boston, and the findings are similar to other studies showing disparities in hospice care use by race.

Online Registries for Palliative Care and Hospice Programs

The Center to Advance Palliative Care and the National Palliative Care Research Center are launching a new National Palliative Care Registry. The registry was created to "guide local palliative care leaders in the development and sustainability of their programs." Register your palliative care program today.

Hospices can also update their programs profile at HFA’s Hospice Directory. HospiceDirectory.org connects consumers and communities to hospices by offering the most comprehensive and user-friendly North American directory of hospices. Register your hospice here.