African Americans May Utilize Hospice Less Due to Eligibility Criteria

A study published in the February 1, 2009 issue of CANCER , explores the reasons for racial disparities in hospice care among cancer patients. Dr. David Casarett and researchers from the University of Pennsylvania interviewed 283 patients receiving cancer treatment and were asked about their perceived need for five hospice services and desire to continue cancer treatment.

The researchers theorized that if disparities in hospice use were the result of preference for aggressive treatment among African Americans, then their rates of hospice use could be increased by redesigning hospice eligibility criteria. Conversely, if African Americans were less likely to want hospice services, then changes to the benefit may not be necessary, but modifications to the services that are offered may be warranted.

Dr. Casarett's team found that African-American patients had stronger preferences for continuing their cancer treatments as well as greater perceived needs for hospice services. The greater perceived need for hospice services among African Americans was attributed largely to differences in self-reported finances—poorer patients wanted more services.

"These findings suggest that the hospice eligibility criteria of Medicare and other insurers requiring patients to give up cancer treatment contribute to racial disparities in hospice use," the authors wrote. "Moreover, these criteria do not select those patients with the greatest needs for hospice services," they added.

The basis for these disparities is likely related to both cultural differences and economic characteristics. The results from this study indicate that hospice access could be made fairer by using eligibility criteria that are more directly need-based. For example, the investigators suggested that eligibility might be determined by assessing needs for specific hospice services such as pain or symptom management.

View more coverage of the study from HealthDay News and Reuters Health.

HFA is holding its nationally broadcast teleconference on Diversity and End-of-Life Care on April 29, 2009. Below is an excerpt from a chapter in the teleconference’s companion book by Richard B. Fife on “Diversity and Access to Hospice Care.” Fife is a United Methodist minister, president/CEO of the Foundation for End-of-Life Care, and a founding and sustaining member of the Duke Institute for Care at the End of Life.

For several years, I chaired the corporate ethics committee for VITAS Healthcare. In 2003, I asked a member of the committee---Dr. Richard Payne, director of the Duke Institute for Care at the End of Life---to give a thorough and firsthand report on barriers to hospice care for African Americans. Payne began by telling a story of his experience at M. D. Anderson Research Hospital in Houston, where, at the time, he was one of two African-American physicians on staff. He suggested palliative care to a black man dying of cancer, who responded by asking him if he talked with all of his patients about this. Payne went on to say that this patient, like most African Americans, was extremely resistant to hospice and to what Payne considered to be a painless and dignified death. He said that blacks were twice as likely to request life-sustaining treatment as whites and much more resistant to making advance directives. He said hospice was seen by African Americans as giving up hope. One of the reasons his black patient would not listen to him was a widespread mistrust of the medical establishment by African Americans. Payne cited statistics illustrating that many African Americans do not have access to good medical care and that years of neglect, abuse, and discrimination by the medical establishment have taken their toll. According to Dr. Payne, “The medical community’s long, sorry history of racism and unethical behavior toward African Americans must be acknowledged and corrected” (Payne, 2000).

Fife goes on to offer some insight on ways to overcome these barriers.

Part of the author’s personal history in overcoming barriers to hospice in the African-American community involved the access program of VITAS Healthcare Corporation, one of the largest hospice providers in the country. One of the more successful VITAS access programs began almost 10 years ago on the Chicago South Side. VITAS made a long-term commitment to the African-American community that dominates that part of Chicago and took a number of steps to break down barriers to hospice access. First, VITAS hired management and interdisciplinary team members who represented the community. To do this, it developed and implemented a culturally specific recruitment plan, provided diversity education, and fostered a philosophy of diversity. It evaluated the care delivery model and modified it as needed. VITAS conducted focus groups with the staff to identify prospective needs in the community. Externally, VITAS conducted focus groups to determine geographically and culturally specific needs. It implemented a community outreach program focused on recruiting religious leaders throughout the community. VITAS held a series of breakfast and dinner meetings and initiated open discussions. It provided educational materials to inform the community about hospice and evaluated these materials to ensure that they reflected cultural diversity.

VITAS directly addressed the issues of trust and cultural concerns by developing programs designed specifically for the community. One of these programs, developed at the Duke Institute for Care at the End of Life, was entitled “Crossing Over Jordan.” It was presented three times in the community by Payne, Dr. Karla Holloway of Duke University, and local religious leaders who were incorporated into the program. Recognizing the importance of the church in the African-American community, VITAS collaborated with Jesse Jackson’s Rainbow Project on the Thousand Churches initiative. VITAS hired an African-American liaison person to work with the community and placed a staff member on the Thousand Churches project.

Over time, VITAS developed specific marketing programs that greatly raised its profile with the African-American community. VITAS worked to find common goals of care, looking at the role of spiritual beliefs and practices in decision making and at the role of family and extended family in the community. In a recent report, Sharon R. Latson, Senior Director of Access Initiatives for VITAS, said that the organization has accessed the African- American media to create stronger visibility for hospice in the community; conducted educational workshops on “What is Hospice?” at village halls, libraries, townships, and senior centers; and implemented hospice education in community clinics serving mostly African-American clients. From 2004 to 2008, VITAS saw a 14% increase in the total black average daily census (Latson, 2008).

Hospice Programs Help Preserve Memories

Today's Dallas Morning News included a piece on hospices' efforts to assist patients in recording their life stories. Reporter Bob Moos inteviewed HFA consultant Dr. Kenneth Doka for the article.

As more people turn to hospices for end-of-life care, more hospices are broadening their programs far beyond traditional bedside services.

Hospices have long taken a holistic approach to caring for the terminally ill and their families, relying on teams of physicians, nurses, social workers and chaplains.

But hospices are also depending more on art, massage, music and even pet therapists to improve the quality of their patients' remaining days.

One program that has especially caught on encourages patients to record their life stories for posterity and, at the same time, give themselves some peace of mind.

"Life reviews aren't new, but they're becoming particularly popular because they appeal to current patients' desire to leave some sort of legacy," said Dr. Kenneth Doka, a senior consultant to the Hospice Foundation of America.

"Looking back can be therapeutic," he said. "It can help you come to terms with difficult circumstances, celebrate achievements and make you realize your life counted."

The article accompanies The Dallas Morning News series on palliative and end-of-life care.

HFA produces The Guide to Recalling and Telling Your Life Story, a wonderful workbook and DVD that offers practical suggestions from hospice workers and patients on reliving the experiences of growing up and growing older.

South Carolina Drops Hospice Coverage from Medicaid Program

The Palliative Care Blog reports that South Carolina is eliminating coverage for hospice services under its Medicaid program. While hospice care is a covered benefit under Medicare nationwide, each state determines which services are offered under Medicaid.

Approximately 45 states and the District of Columbia offer hospice coverage under Medicaid. Your hospice provider will be able to tell you if you live in a state where the hospice Medicaid benefit exists.

New Report from the Dartmouth Atlas Project on Regional and Racial Variation in Health Care Among Medicare Beneficiaries

A report commissioned by the Robert Wood Johnson Foundation from the Dartmouth Atlas Project examines five areas of health care delivery, showing that while life expectancy has improved, racial and socioeconomic disparities in mortality and health status are increasing. Learn more and download the report here.

HFA will host a national teleconference on April 29, 2009 on Diversity and End-of-Life Care. The program will focus on ways of understanding diversity and how cultural histories, traditions and beliefs can affect end of life care.

California Receives Waiver from Federal Government for Pediatric Palliative Care

Earlier this month, the state of California received a waiver from the Centers for Medicare & Medicaid (CMS) to offer children access to hospice care without requiring patients to forgo curative treatments.

Under the new system, the services that will be added to the package of current MediCal offerings include: community-based care coordination; respite care; expressive therapies such as art and music; family training; and bereavement counseling. These new benefits effectively enable children living with certain medical conditions who are under age 21 and eligible for full-scope MediCal to access community-based support services through a licensed hospice provider concurrent with ongoing curative therapies intended to cure their disease or prolong their lives.

“We believe that it is inhumane to require parents to give up on curing their child’s disease in order to receive compassionate family support services provided by a hospice team,” stated Lori Butterworth, co-founder and co-executive director of CHPCC, “Our work in Central California has demonstrated that under this model we can provide better healthcare for children and make more efficient use of taxpayer dollars statewide.”

Deadline Approaching for NHPCO Veteran Grants Program

Applications for the National Hospice and Palliative Care Organization’s new Reaching Out Grants program are due by December 31, 2008. The 10 grants, ranging from $5,000 to $25,000 will be awarded to hospice and palliative care organizations, state hospice-veterans partnerships, state veterans homes, state hospice organizations, groups working with homeless veterans, or other organizations providing care and services to veterans. The grants are part of an effort to improve access to end-of-life care for rural and/or homeless veterans.

New Video Resource for Caregivers

Yesterday Jane Gross asked her readers at The New Old Age blog whether they had time to attend support groups and if not, why?

Do you attend caregiver support groups? If not, is it because of time constraints? For those of you who do go to regular groups, what have the benefits been? For those who don’t, where else have you found people in the same boat willing to listen and share what works for them?

Two readers commented that they found their support online, by reading blogs or finding a disease-specific message board for support.

Today's Triage blog from The Chicago Tribune, highlighted a new online video resource, VideoCaregiving:

What's it like to be an adult African American man taking care of a mom with Alzheimer's?

What can you do when a parent, fiercely independent and recovering from a stroke, doesn't want your help?

See for yourself at www.videocaregiving.org, a new resource for an estimated 50 million caregivers across the country launched by Chicago-based Terra Nova Films.

It's a noteworthy effort to tell the stories of caregivers and their loved ones through documentary videos assembled on the Web.

Terra Nova drew the real-life material from 50 hours of footage shot for about 300 films it's produced over the years for nurses, doctors, lawyers and other professionals.

To start, the film-makers have posted 22 segments on two broad topics: Alzheimer's disease and caregiving. Each is five to eight minutes long.

Eventually, they hope to add additional topics such as Parkinson's disease, multiple sclerosis, and amyotrophic lateral sclerosis, also known as Lou Gehrig's disease.

HFA offers a special issue of its bereavement newsletter, Journeys, on Understanding Support Groups. This newsletter is designed to help people understand what a support group can offer to the grieving person and help them decide if a support group would be a valuable tool as they make the journey through their grief.

Series on Palliative Care at Baylor University Medical Center in Dallas

Maggie Mahar at the Health Beat blog recently highlighted this series on palliative care appearing in The Dallas Morning News. In the first of a five part series, a palliative care nurse is followed through her interactions with patients, their families, and their doctors. An excerpt of the interaction between the nurse, Min Patel, and a surgeon:

Dr. Taylor, 36, called in Ms. Patel that Thursday morning because his patient was the sickest in the unit. But the man's relatives didn't seem to get it. In the twilight zone of the ICU, it was hard for bewildered families to grasp that using more drugs and devices wasn't always the best way to show love.

Dr. Taylor was known for connecting with patients and families. But the palliative team spent hours at bedsides, helping frightened people navigate the hardest choices. Some of their patients, like Dr. Taylor's trauma patient were hit by sudden crises. Many were overwhelmed with chronic complications of old age. Some had organ transplants, only to see the medical miracles fail.

. . .

"The past week or so, I've been really blunt," Dr. Taylor said.

"Have you said: 'He's going to die,' " Ms. Patel asked, "in those words?"

The surgeon looked flustered. No one had broached what the nurse thought the family needed to understand: If that patient went into cardiac arrest or stopped breathing, cardiopulmonary resuscitation wouldn't save him. Without a physician's do-not-resuscitate (DNR) order, he would endure a "code blue" resuscitation attempt and probably die anyway, after needless suffering.

"I haven't said he's going to [die]. I've said most likely he's going to. I don't think we should shock them," Dr. Taylor said. "They've said, 'Yeah, but OK, do everything.' I can't tell them, 'I'm not going to do it because it's not going to work.' "

"Why?" Ms. Patel pressed. "Is that what you believe? Is it futile?"

"Mostly," Dr. Taylor said, backpedaling

Ms. Patel looked at him evenly. Dr. Taylor towered over her, but she pushed the young doctor for an answer. He shifted against the wall.

"Something's going to happen that's going to get him," he said. "Most likely he's going to have an event that's fatal to him. The longer he's in the ICU, the worse it tends to be."

"We can keep him alive," Ms. Patel said. "But we can't make him better, Dr. Taylor."

View the paper's complete series on end-of-life medical care, which includes videos of the patients and their families.

Informational Videos on Becoming a Hospice Nurse or Caregiver

Hospice of the Florida Suncoast has posted a series of videos on hospice employment, including "How to Become a Hospice Nurse" and "What is the Job Description of a Hospice Worker." View the hospice nurse video below, or see the whole series here.

Upcoming Events Addressing Grief and Bereavement

• This Sunday is the Compassionate Friends annual Worldwide Candle Lighting . Family and friends light candles for one hour to honor and remember children who have died at any age from any cause. Candles are lit at 7 p.m. local time.


• Next Thursday, December 18, the radio show The Healing and Grieving Heart features two guests to discuss dealing with grief when death comes suddenly. You can listen to the broadcast at 9 a.m.
  
  
• The American Foundation for Suicide Prevention is offering a nationwide training program to help survivors of suicide loss learn the "how-to's" of creating and facilitating a support group. The next session is in Denver, CO on February 5-6, 2009. To learn more and register by January 14, see the AFSP's website.
  
  
• Many hospices take time during the holiday season to formally remember the patients who have died in their care by sharing 'trees of remembrance' or 'trees of light' with family members. In addition to helping families honor the memory of their loved ones, some trees also help families help support the hospice which provided care for their family member, as in this case from my local paper in Pennsylvania.

Interview with Patricia Loder, Executive Director of The Compassionate Friends

This Sunday, December 14, marks The Compassionate Friends' annual Worldwide Candle Lighting Service. Patricia Loder, Executive Director of TCF, transformed her grief into a way to help others who have a shared experience-the loss of a child. In this interview with HFA's Lisa Veglahn, she discusses what she has learned through her own experience as a grieving parent, and the role that her organization plays in educating first responders and others about how best to help parents and families.

Q. In a recent article you wrote for HFA’s new Child Loss issue of “Journeys”, you speak very openly about your own experience with grief following the tragic deaths of your daughter Stephanie and your son Stephen. Can you talk a little about your own journey from being a grieving parent to becoming the Executive Director of The Compassionate Friends (TCF)?

A. Every grief journey is different, but certainly I went through many of the emotions that other grieving parents go through. After the realization that I was the only one who had survived, I knew that I could curl up in a ball and just cry all day or I could go and help others, and in doing so, honor my childrens’ memory.

Going from being a grieving parent to working as the Executive Director of a group like TCF is not an unusual model. There is so much you learn about yourself on this journey, that you often hope to be able to share what you’ve learned to help others.

Q. What are some lessons that you have learned from other grieving parents through TCF?

A. I am learning every day; the people involved with TCF continue to teach me how to cope and deal with tragedy. Everyone’s grief is unique, but in TCF the shared loss really can make a difference, because we can relate.

Q. That concept of “shared loss” is something that has come up in discussions around HFA’s upcoming teleconference on diversity and end-of-life care. Many support groups are delineated by what you described—the “shared loss.” From your experience, why might it be important for grievers to find support from others who have experienced a similar type of loss—which might even supersede other issues of culture or shared background?

A. Our first experience after our children died was to attend a general bereavement group. There were people there who had lost spouses, grandparents, even pets. When my husband and I sat in this group, we were the only grieving parents, and we had lost two children. Without wanting to, we became the focus of that group. And even though I know it happened out of concern, it quickly became uncomfortable; we felt like outcasts.

One person in the group actually said, “If you can survive the loss of two kids, I can certainly survive my loss!” But I was nobody’s role model; I struggled to get out of bed and put on two matching shoes each morning. I know that she wasn’t trying to be mean or hurtful, but sometimes people just don’t know what to say.

Finding a Compassionate Friends chapter allowed me to be with others who had experienced a similar loss; there was a sense of comfort and relief to be with others who really understood what we had been through.

Q. How does the work of The Compassionate Friends serve to help in these situations?

A. I believe that the bereaved need to do more to educate people as to what it is that the bereaved need. Often when people are faced with a grieving individual they feel it is necessary “to fill the room with words,” but that’s not necessary. Walking along side, sitting with, and just being there for someone in grief is important. People need to get comfortable with silence. One of the goals of TCF is to teach what helps, and what has the potential to hurt.

We work with a wide range of groups—first responders, emergency personnel, schools and employers. I find that groups are very open to learning more. I remember one experience working with firefighters, many of whom had experienced very difficult situations with families. These men and women needed to tell their stories and have someone listen; it was a very emotional experience to listen to them. We were able to help them decide the “right” words for them to use, and what to expect when dealing with a newly bereaved person.

Q. Another group that has to often break bad news to parents is physicians. A recent study showed that there is a wide gap of communication and understanding between what parents of seriously ill or dying children hear about a prognosis and the information that the physician is actually giving. What advice would you have in that situation?

A. I have had similar experiences working with physicians. Physicians need to learn to be patient and lead parents through these difficult conversations. Even if it’s difficult to find the time, doctors may need to take more time in explaining the prognosis and the options, and parents may need to hear the information more than once.

Q. Many readers may know that TCF offers grief support for parents whose young children have died, but some may not be aware that your organization’s mission includes reaching out to parents, siblings, and grandparents, including parents whose adult children have died. What is the importance of including these other groups?

A. TCF was actually started in the U.K. When it started in the U.S., the groups were specifically for parents. But then the realization hit that the death of a child happens to everyone in a family. The surviving children are often what we call “forgotten mourners.” And not only does a grandparent grieve the death of a grandchild, but they have to watch their own child in overwhelming grief and pain.

TCF involves a range of people and losses, from those who have experienced a miscarriage to parents whose adult child has died. Most of our more than 600 chapters have members with a wide range of these experiences.

Q. How do these more than 600 chapters operate?

A. Our office serves as the umbrella organization. Each TCF chapter is run by bereaved people, based on a peer support model. We generally recommend that at least three people, and preferably couples, help in the start-up of a new chapter. Many bereavement support groups can be very female-focused; involving both partners helps to encourage men to attend.

We also require that those who lead the chapters are at least 18 months along in their grief journey. Before starting a chapter to help others, it’s important that these parents have experienced their “firsts”—the first birthday after the death of their child, the first holiday, the first death anniversary. These events can be very traumatic for newly bereaved parents, and their energy should be focused on getting through those times. Some roles of our national organization include teaching chapters ways to reach out into their communities to newly bereaved parents and grandparents. We also help them learn how to reach out to professionals for referrals.

Q. What role does the Internet play in helping to provide this type of support?

A. This is not the world we lived in when Stephen and Stephanie died. TCF offers online chat support every night, and has trained moderators for these chats. These chats have grown so much, we often have more than one moderator working in the room at a time. The Internet does allow people to connect in ways that were not possible before. In fact, a ceremony that began over the Internet is now our biggest annual event.

Q. That would be the 2008 Annual Worldwide Candle Lighting Service, scheduled for December 14. Can you tell me more about the event and its significance to grieving parents and families?

A. The Worldwide Candle Lighting Service is now in its 12th year. This event started as a small Internet observance for grieving parents who had met online. After the first year, they approached TCF and we were happy to sponsor it.

We ask that, on the second Sunday in December, this year December 14, that people light a candle for one hour at 7pm in the time zone where they live. People can do this as individuals, or as part of a community service; there will be more than 500 services listed on our website for that day. The idea is that there will be a steady glow of candlelight across the world, remembering and honoring children who have died. On our website (www.thecompassionatefriends.org ) there will be a Remembrance book online for people to post messages, and we also have a listing of public services.

The day has special meaning for me personally. It has been 18 years since my children died, but I still set aside this day each year. The Candle Lighting service gives me the opportunity to slow down in this busy season and take some time for them to be remembered. For a bereaved parent, it is very powerful to know that our children are being thought of with love across our community and around the world.

---

TCF Executive Director Patricia Loder has been involved with The Compassionate Friends for many years. Driving home on the first day of spring, 1991 from a day spent helping her father, Pat and her 8-year-old Stephanie and 5-year-old Stephen never made it to their destination as her car was struck by a speeding sport motorcyclist. Though Pat survived, her children did not. Having experienced the death of her older brother from cancer only six months before the death of her children, Pat was unprepared for the grief struggle that would reshape her life. She found TCF a few months later, and received so much help and support, she went on to co-found a TCF chapter in 1993 nearer to her home, and later served as regional coordinator for Michigan.

On a national level, she became involved as co-editor of the National Newsletter and the sibling newsletter, STAGES. Pat and her husband Wayne became co-founding editors of TCF’s national magazine, We Need Not Walk Alone. Pat played a dual role as she was hired as development director of The Compassionate Friends in 1998. Two years later she was asked to fill the vacant executive director position. Pat spearheaded the first TCF Walk to Remember which has become a popular annual event at each national conference. She has written many stories regarding grief and bereavement following the death of a child and is a frequent workshop presenter and grief speaker. As the face of TCF/USA, she has led the organization through many positive changes as it has continued to grow and move forward in its mission. Pat has a background in government and owned a municipal consulting service for many years.

Caregiving Notes

• In November, we posted AARP's updated report, Valuing the Invaluable. Last week, Jane Gross wrote about the report in her New Old Age blog. Today, Gross writes about multigenerational households and shares some tips from her readers "for avoiding the minefields and maximizing the pleasures of living in intergenerational households."
• The New York Times reported on the increasing numbers of male caregivers:

  The Alzheimer’s Association and the National Alliance for Caregiving estimate that men make up nearly 40 percent of family care providers now, up from 19 percent in a 1996 study by the Alzheimer’s Association. About 17 million men are caring for an adult.
  
  “It used to be that when men said, ‘I’ll always take care of my mother,’ it meant, ‘My wife will always take care of my mother,’ ” said Carol Levine, director of the families and health care project at the United Hospital Fund. “But now, more and more men are doing it.”



• An elderlaw attorney shares some advice on discussing end of life plans with relatives during the holidays.
  

  Although it’s difficult, I recommend that you take the time during the upcoming holidays and family gatherings to have what we call the Final Arrangement Conversation with your family. A Final Arrangement Conversation should have at least two distinct elements:

  1. A written expression of your attitudes and desires for life-prolonging treatment (or lack thereof) in the event that you are incapacitated, have been diagnosed as being terminally ill, or are suffering from a long-term memory-robbing illness; and
  2. A written expression of your attitudes, desires, expectations, payment source, etc. regarding your final wishes–how your family should handle your funeral, burial, cremation, religious tradition, probable cost, music, choices of service providers, etc.

  
  When I begin this conversation with clients and their families, I almost always run into resistance. Seniors (even terminally ill seniors) often say, “I don’t care. Funerals are for the living, so do whatever you want.” But families really want to know how their loved ones feel about these issues. When seniors choose to talk about it, they often find it very meaningful to share their expectations. Once we overcome this conversational taboo, the discussion almost always ends with a hug.

Hospice Care Notes

Audrey Wuerl, Education Coordinator for the Hospice of San Joaquin in California, offers advice on partnering with physicians during end-of-life care in The Gilbert Guide.

Most patients are aware that “something is going on” with their bodies, and may not be surprised when given a life-limiting diagnosis. Frequently, it is the patient’s family who has difficulty accepting the fact of impending death. Physicians can help by including the family in discussions about the disease trajectory and by allowing them to participate in setting new goals of care. Goals will be different for patients for whom death is not eminent; those with life-limiting illnesses must choose between length of life and quality of life. While these conversations are difficult for both physicians and families, perhaps it is best stated thusly: “prognostic information is often the single most important piece of information that patients need to make informed choices.”²

Remember, it is the goals of care which are changing, not the underlying patient-physician relationship.

An article appearing in the Saugus Adverstiser (MA) gives advice on navigating through your health care options when a family member is facing a life-limiting diagnosis, including hospice care.

By following a few common sense steps, families can make sure that they remain in control of a loved one’s health situation and are able to advocate for their needs:

• Insurance — Learn every detail of your insurance plan. From co-payments to service limitations, it is your responsibility as a consumer to understand what options are available. For some, this may require calling your insurance company to ask questions and then following up to make sure that your needs are met.


• Research — Take some time to learn about your options. For example, many people have misconceptions about hospice care and the differences from palliative care. Hospice care is palliative treatment provided only for terminally ill patients with a life expectancy of six months or less. However, palliative care can assist patients at any stage of a serious illness. Keep in mind that simply inquiring about hospice care does not mean that a loved one needs it immediately. However, it helps to be informed in case a serious illness becomes life threatening.


• Organization — Keep a binder of all recorded health information. Make notes for every visit to the emergency room, physician’s office, hospital, and rehabilitation center. From these visits, keep a running list of your needs, concerns and goals. Plan your discussion points before your next physician’s visit, and know that you have a right to ask the hard questions regarding the patient’s quality of life.

Lawsuit to Stop New CMS Rule on Hospice Reimbursement Rates Dismissed

On September 5, the National Hospice and Palliative Care Organization (NHPCO) filed a lawsuit asking for an immediate injunction to prevent a Centers for Medicare & Medicaid Services' (CMS) Budget Neutrality Adjustment Factor (BNAF) that is used to compute Medicare’s hospice reimbursement rates. The new rates went in to effect in October 2008. The federal District Court for the District of Columbia dismissed the lawsuit on procedural grounds. See background information on the lawsuit here, including the District Court's ruling.

Palliative Care Notes

Bob Wachter, the Associate Chairman of Medicine at the University of California, San Francisco, writes about the role of palliative care services in the hospital setting. The post, "My Patients are Dying. . . And I've Never Been Prouder" discussed the development of the palliative care movement.

But in the hospital world, these twin trends – hospice on the one hand, and decision-making regarding CPR and mechanical ventilation on the other – remained strangely dissociated. The movement promoting compassionate care for dying patients was largely community-based and tended to focus on patients dying slow and painful deaths – mostly those with terminal cancer. Meanwhile, in the hospital we were exploring the senselessness of “doing everything” for (or, more to the point, to) patients with poor prognoses, troubled by seeing lives end so violently, stripped of all dignity. But we spent virtually no time thinking about how to bring hospice-like sensibilities and resources into the hospital.

Wachter also talks about the positive impact the increasing role of palliative care has had for patients.

The results have been spectacular. Today, when a patient is admitted to UCSF Medical Center with a potentially terminal illness, we spend less time on a narrow and largely irrelevant discussion about “would you want us to shock you if your heart stops” than on a much broader dialogue about two different philosophies of care: doing everything to keep you alive longer, with all of its attendant burdens (not to mention costs, but that’ll be a subject for another day), versus focusing on keeping you, and your loved ones, as comfortable as possible during your final days. We have that discussion now because a) we’re all much more at ease with the concept; b) we are now relatively well schooled in how to conduct these conversations; and c) we can bring to bear resources and experts to help us out – both in having these discussions and in implementing the plan when patients and families choose comfort over cure.

This post also appeared on The Health Care blog; be sure to read the comments posted there as well.

Hospice Volunteers: Sewing Memory Bears and Much More

The Daily Item (Sunbury, PA) featured an article this week on hospice volunteers who decorate memory bears for families grieving the death of a loved one. The hospice mentioned uses bears donated by the community and decorated with items of clothing from the deceased.

At Geisinger Hospice, volunteers sew "memory bears" made from fabrics of deceased loved ones' clothing.

The bears are donated free to the hospice, whole and without adornment. The hospice volunteers, accomplished sewers, then dress the bear and give it back to the grieving family.

Karen Adams, hospice director, said, "Some folks in our hospice figured it would be nice to offer some families a memorabilia piece to remember a loved one by. After attending a seminar, someone came up with the idea of a '�memory bear' after seeing what other similar facilities have done. The idea caught on very quickly. That was six months ago."

Other hospices may have volunteers create the bear itself from an item of clothing or other fabric. Memory Bears were featured in HFA's 2007 Teleconference, Living With Grief: Before and After the Death. The video below shows a recipient of a memory bear, and a volunteer who discusses how the bears are made and their significance.



Sunday's Record-Eagle (MI) published an article about the important role volunteers play in the services a hospice provides.

"Hospice is so highly valued by the community because of the help and support we provide at such a difficult time in people's lives," said Meredith Goodrick, director of Munson Hospice and Palliative Care in Traverse City.

Volunteers are the lifeblood of hospice, serving in many different capacities including direct patient care, office assistance, running errands, serving on advisory boards and more, Goodrick said. "There is the opportunity for any talent," she said.

Learn more about becoming a hospice volunteer here.

Upcoming CMS Hospice Forum and Caregivers Chat Scheduled

From the Medicare Update blog:

The Centers for Medicare & Medicaid Services (CMS) will hold the next Home Health, Hospice & DME Open Door Forum at 2:00 p.m. (ET) on December 9, 2008.

To participate by telephone, dial 1-800-837-1935 and use conference ID 58378451. To participate in person, RSVP by 2:00 p.m. (ET) on December 5, 2008 to HOMEHEALTH_HOSPICE_DMEODF-L@cms.hhs.gov, and include your name, organization, telephone number, and "Home Health" in the subject line. The Open Door Forum will take place at the Hubert H. Humphrey Building, 200 Independence Avenue S.W., Washington, D.C.

Two hours after the Open Door Forum, CMS will also make an audio recording of the Open Door Forum available, dial 1-800-642-1687 and enter the conference ID. The recording will expire after 3 business days.

For Caregivers: Rite Aid is hosting two free, live online chats on December 3 and 4.

To participate in the online chat, register online at www.giving-care.riteaid.com. Questions also may be submitted by email prior to the event by sending an e-mail to expertevent@riteaid.com.

On Wednesday, December 3, from 12-1 p.m. EST, Attorney Vincent J. Russo, ESQ, will answer questions on elder law, special needs and estate planning. Elder Care Expert and Geriatric Care Manager Dr. Marion Somers, PhD, will discuss topics ranging from home safety to senior-friendly technology.

On Thursday, December 4, from 12-1 p.m. EST, Susan Strecker Richard, editor-in-chief of Caring Today, will offer advice on how to care for loved ones without sacrificing your own wellbeing and answer general questions on caregiving. Rite Aid pharmacist Natalie Teaff, R.Ph, will answer questions on medications, therapies and medication interactions.