The Role of Grief Counseling - Revisited

In an August 2007 article from the journal Professional Psychology, Dale Larson and William Hoyt seek to set the record straight on the benefits of bereavement counseling. A summary of the argument posted recently on the British Psychological Society's Research Digest blog, describes how the reputation of the field was damaged after an unpublished student dissertation, claiming 38% of bereaved clients would have fared better with no treatment, was cited one time by pyschologist Robert Neimeyer in 2000. "Since then, over 14 studies have reported the 38 per cent figure, but each time they have cited Neimeyer's published paper (a summary of past research), not Fortner, thus giving the misleading impression that the result came from a piece of quality, peer-reviewed empirical research."

Larson and Hoyt made the same argument in HFA's 2007 book, Living With Grief: Before and After the Death, in a chapter entitled, "The Bright Side of Grief Counseling: Deconstructing the New Pessimism." In this chapter, Larson and Hoyt address the challenges faced by bereavement professionals to combat this images. An excerpt:

A major implication of the new perspective is that bereavement professionals can enjoy a more realistic and positive view of their helping efforts. For the past 6 years, the possibility of harming clients has troubled counselors who accepted the TIDE [treatment-induced deterioration effects] findings. If 38% of grief-counseling clients and nearly 50% of normally bereaved clients are worse off at the end of treatment than they would have been without treatment, grief counseling is ethically problematic. The perspective offered here should provide relief for these counselors.

Hospice administrators and other nonclinicians who assist the bereaved can also approach their work with greater confidence. Many of these professionals were strongly influenced by the new pessimism. Patti Homan, the Bereavement Professional Section leader for the National Council of Hospice and Palliative Professionals of the National Hospice and Palliative Care Organization, received inquiries from hospice bereavement coordinators in different parts of the country who were concerned because their administrators, as a result of the publicity that attended the CFAH report, were questioning the value of their bereavement programs (personal communication, March 1, 2006).

Correcting these negative views of grief counseling and bereavement services will be difficult; replacing them with the cautious optimism that seems warranted in light of research findings to date will require systematic efforts.

The whole chapter is available for purchase here, as is the complete book.

CBS Evening News Offers Misleading Coverage of Medicare Hospice Benefit

The CBS Evening News aired a story this week on a hospice owner who owes the Centers for Medicare & Medicaid (CMS) $3 million (view video below) for services she provided to terminally ill patients. HFA does not know the details of this particular case, and cannot address the specific billing issues raised by the brief story. However, we would like to correct the inaccurate portrayal of how hospice payment by CMS works. The report stated:

But there's a problem: 11 years ago, Congress mandated that terminally-ill patients are entitled to unlimited hospice care - but Medicare only pays the hospices for six months' worth, CBS News correspondent Thalia Assuras reports.

In fact, hospice care is a covered benefit under Medicare for patients with a prognosis of six months or less. A patient can remain in hospice care beyond six months if a physician re-certifies that the patient is terminally ill every 60 days thereafter.

The payment issue is more complicated than the report implies. Hospices are paid a daily rate by CMS for each day the patient receives care, according to a fee schedule for four broad categories of care. In addition, there is the cap amount set by CMS (the cap for 2008 is $22,386.15). However, this cap is not applied to each individual hospice patient, but rather aggregated across the entire patient population. So a hospice that serves 100 patients a year, could have a total cap of $2,238,615.

Since the majority of patients served by hospice are referred less than six months before their death, a hospice can provide care to those patients who live longer than six months and still receive payment for their services from CMS. In recent years, some hospices have exceeded their caps and there are groups lobbying to change the way hospices are reimbursed. HFA is not an advocacy organization, and has not taken a position on the payment issue or those efforts, but we would like to provide our readers with accurate information on how CMS hospice payments work currently.

Dartmouth Atlas of Health Care Garners More Press

There have been a slew of articles this week using data from the Dartmouth Atlas of Health Care. Here are a few:

• The New York Times reports on discrepancies in end-of-life care in New York City's public and private hospitals.

• The Seattle Times and the Seattle Post-Intelligencer include Seattle hospital information.

• Tampa Bay Online carries information on surrounding counties.
  

• Consumer Reports describes their new Health Ratings Center, part of which is based on the Dartmouth Atlas.

• The San Francisco Chronicle looked at Consumer Reports rankings of Bay Area hospitals.

UPDATE 6/3/08:

• The Sacramento Bee

• Syracuse, NY - the Post-Standard

New Medicare Conditions of Participation for Hospices Published

The Centers for Medicare & Medicaid Services (CMS) has published a final rule, "Medicare and Medicaid Programs: Hospice Conditions of Participation" to the Federal Register. It is available for download as a PDF document here.

Report on UK Pilot Program to Improve End of Life Care

This report on a 2006 pilot program launched in the UK examines the lessons learned from an attempt to extend a project (the King's Fund Enhancing the Healing Environment [EHE]) to six additional hospitals and two Marie Curie Cancer Care hospices in England and Scotland, in an attempt to "improve the environment of care for those who are dying, bereaved, or deceased." The pilot program has been extended to 20 further facilities in England. The original King's Fund program had previously worked with 119 National Health Service trusts (which provide both primary and acute medical services in England), 2 hospices and 5 prisons. The report's authors include the program director and the funding and development director for the King's Fund EHE, as well as two outside consultants. From the report:

The programme encourages and enables local teams to work in partnership with service users to improve the environment in which they deliver care. The programme consists of two elements: a development programme for a nurse-led, multidisciplinary team and a grant for the team to undertake a project to improve their patient environment. Throughout our work on the environment of care, one theme has remained constant– the need for health care settings that make patients feel cared for and staff feel valued.

. . .

As a result of our practical experience we recommend that all the settings with which end-of-life care occurs provide:

• a room where patient and family can be taken for confidential discussions.


• the option of single room accommodation designed to engender a feeling of homeliness where patients retain control over their environment


• informal gathering spaces and places where families can meet, confer andtalk with care staff


• guest rooms where close family or friends can stay overnight with facilities for catering and internet access


• appropriate places for 'viewing' the deceased.

Our practical experience also leads us to recommend that all health service providers include care of the dying, bereaved and deceased in corporate induction programmes for all staff and that professional training for all staff groups should include material on the impact of the environment in end-of-life care.

As a result of our consultative conference, considering the issues raised by the work, we recommend the Department of Health should develop national standards for the environment for end-of-life care, significantly increase investment in these environments and ensure that policy and practice development enables everybody to make choices about where they would prefer to die and to revisit that choice as their condition changes.

Examination of Short-term Use of Antipsychotics in Dementia Patients Reveal Risks

ScienceDaily and others have reported on an Archives of Internal Medicine article showing that "Older adults with dementia who receive short-term courses of antipsychotic medications are more likely to be hospitalized or die than those who do not take the drugs. . ."

Paula A. Rochon, M.D., M.P.H., F.R.C.P.C., of the Institute for Clinical Evaluative Sciences (ICES), Ontario, and colleagues studied older adults with dementia living in the community or in nursing homes between 1997 and 2004. In each setting, the researchers identified three groups of equal size who were identical except for their exposure to antipsychotic medications. Among 20,682 older adults with dementia living in the community, 6,894 did not receive antipsychotics, 6,894 were prescribed atypical or newer antipsychotics and 6,894 were prescribed conventional antipsychotics, such as haloperidol or loxaprine. Among 20,559 older adults with dementia living in nursing homes, 6,853 received no antipsychotics, 6,853 received atypical antipsychotics and 6,853 received conventional antipsychotics.

Participants' medical records were examined for serious adverse events, defined as hospital admissions and death within 30 days of beginning therapy. "Relative to community-dwelling older adults with dementia who did not receive a prescription for antipsychotic drugs, similar older adults who did receive atypical antipsychotic drugs were three times more likely and those who received a conventional antipsychotic drug were almost four times more likely to experience a serious adverse event within 30 days of starting therapy," the authors write. "Relative to nursing home residents in the control group, individuals in the conventional antipsychotic therapy group were 2.4 times more likely to experience a serious adverse event leading to an acute care hospital admission or death. Those in the atypical antipsychotic group were 1.9 times more likely to experience a serious adverse event during 30 days of follow-up."

Memorial Day Posts

Three items we wanted to share from the many Memorial Day stories and posts:

• Debra Bradley Ruder (from Growthhouse's Goodbyes blog ) shared an item from National Public Radio's StoryCorp series. You can listen here to David Shea tell about helping his father tend to gravesites on Memorial Day.
  
  
• Pallimed has launched two new blogs, one which focuses on the Arts & Humanities. Amber Wollensen, MD posted this item about the symbolism in graveyard art.
  
  
• Last, this video from ABC News from soldiers who tend the graves at Arlington National Cemetery and shows the solemnity and reverence the soldiers hold while placing flags at each gravesite.

Caregiving Notes

Here's a round-up of some recent blog posts on caregiving.

• The Caregiving Solutions blog offered this post on mindfulness. Pamela Larsen Schroeder writes about how practicing mindfulness can be a powerful self-care strategy to alleviate caregiver stress.


• Sheryl Karas at the Spiritual Caregiving blog writes about the difficulties that can arise when a family member decides to provide in-home care for an elderly relative, in this case, a grandchild moving in with a grandparents.


• And last, an article by Brian Wallheimer, of the Journal & Courier (IN), discusses the challenges of so-called "sandwich" caregivers, including financial and emotional strains.
  

Discussing the Future of Hospice Care

A MedPage Today column by David B. Nash, M.D., M.B.A., F.A.C.P.; JoAnne Reifsnyder, Ph.D., A.P.R.N. (DISCLOSURE: Dr. Reifsnyder has been a panelist and expert for HFA) discusses recent developments in end-of-life care and what these changes could mean for hospice providers. The authors talk about the roles palliative and hospice care play for patients, and trends on the horizon.

Increasing access to palliative care in the home or other residential settings. Many hospice experts argue that removing the typical eligibility requirement of a six-month prognosis would meet many more patients' needs for palliative care and create access for patients with chronic illnesses.

Because payment for hospice is largely government-funded through Medicare and state Medicaid programs, however, myriad economic and public relations questions must be addressed.

Hospice Rule Changes. Two issues are driving increased CMS scrutiny of the hospice industry: First, the dramatic growth in CMS payments to hospice and second, suspected fraud and abuse in the hospice industry.

Most significant among the imminent changes to the Medicare hospice benefit are a new emphasis on quality assessment and performance improvement, a first step toward what experts agree will be a public reporting initiative and, eventually, a pay-for-performance design for hospice reimbursement, and a new emphasis on leadership at the board level.

Compression of Reimbursement. Noting the hospice industry's exponential rate of growth, CMS has signaled that reimbursement reforms including across-the-board per diem rate cuts and greater scrutiny of claims are on the horizon. And it's unlikely that there will be any help for those hospices that exceed the annual, aggregate per-beneficiary cap on reimbursement -- an increasing problem with growing enrollment of longer-stay patients.

General Inpatient Care and Hospice-managed Inpatient Units. Many hospices now own and operate small, freestanding or co-located facilities where they provide residential and acute-level care to hospice patients. As development of these units has accelerated, utilization of the general inpatient (GIP) level of the Medicare hospice benefit has increased.

CMS is tracking this trend, and has noted a growth in hospice-related expenditures for GIP between 2001 and 2005. Hospices should expect to see greater regulatory scrutiny of utilization.

Hospice in Nursing Homes. Hospices routinely bring the hospice model and service package to residents of nursing homes, providing support to the residents' families and nursing home staff in addition to the resident himself.

Addressing End-of-Life Issues in African-American Families

A Kansas City radio station recently spoke to Kansas City Hospice President Elaine McIntosh and social worker Gloria Thomas Anderson about end-of-life issues in different cultures. Anderson has written a booklet addressing these issues in the African American community. To listen to the interview, click the "Listen" button under the headline of this page.

“I hope the information in this booklet empowers African Americans to make the best health care decisions before they are unable to communicate what they want for themselves,” said Anderson, who was inspired by her own family’s experiences. “I want African Americans to know that end-of-life care isn’t about giving up. It’s about quality of life.”

HFA's 2009 teleconference will focus on ways of understanding the impact of cultural diversity at the end of life. We will post more information about the topic as it becomes available.

How Hospitals Handle Early Infant Death

A recent article from my local newspaper, the Reading Eagle (PA), discusses how two area hospitals help families whose babies die at birth. One hospital hangs a yellow rose on the mother's door, so all hospital staff know the family has lost a baby. They allow parents to spend as much time as they want with their child.

Berks County’s two hospitals — Reading Hospital and St. Joseph Medical Center — have support systems in place that help families cope with infant death.

As part of that effort, hospital staff puts together memorial boxes for families. Those boxes include photographs, locks of hair, knitted clothing and small shells used to baptize the babies.

"We want to create as many memories as we can," said Lori Meredith, a nurse in the neonatal intensive care unit at Reading Hospital. "It is a lot of memories to create in a short amount of time."

Physicians Discussing End-of-Life

The Chicago Tribune's Triage blog featured an interview last week with Dr. Martha Twaddle, chief medical officer of the Midwest Palliative & Hospice CareCenter, in response to new research showing that physicians do not discuss end-of-life issues with patients dying of cancer. Researchers followed 603 people with end-stage cancer, looking at the medical care they received and asking patients about conversations with their doctors.

Q. The researchers talk here of end-of-life discussions. What does that involve?

A. The doctor will say: ‘We don’t have anything left to treat the disease. So we need to talk about what you goals are and what is meaningful support for you and your family.’

Q. What happens instead when these discussions don’t occur?

A. The conversations revolve around the tasks at hand instead of the big picture. The doctor will say the results of your last scan showed this. The therapeutic interventions available to you are these. I think we should begin with such and such treatment or wait and see what the next scan shows and make a decision. It’s always about the next procedure or test. The focus is on the minutia as opposed to the person and their experience of the disease and what are the most likely outcomes.

Depression and PTSD Seen in Caregivers

ScienceDaily reported on a study of caregivers of deceased lung transplant recipients. The study was reported at the American Thoracic Society's conference in Toronto. Researcer Cynthia Gries, M.D., M,Sc., reported that symptoms of depression and post-traumatic stress disorder (PTSD) among caregivers of deceased lung transplant patients are four-to-five times more prevalent than in the average population. The researchers had caregivers of lung transplant recipients at the University of Washington who had died in the last five years fill out three questionnaires.

"We found that caregivers reported that their loved one's symptoms were poorly controlled and that the quality of the dying and death process was worse than that of other populations. In addition, family members who perceived that their loved one had either a lower quality of dying and death or poorly controlled pain symptoms, were more likely to have symptoms consistent with PTSD. . ."

. . .

The study demonstrates that there is an urgent need for significant improvement in areas such as symptom management. Dr. Gries believes that having trained counselors to help family members with emotional needs, as well as financial issues, could reduce the stress on caregivers. "We hope that our findings will increase awareness among clinicians that caregivers experience a significant burden of symptoms and may need additional support," she concluded.

Role of Caregivers, Medical Homes, Dear Abby, and the Compassionate Friends

Here's another round-up of a few interesting items:

• From the caregiverunderground blog, a post about how family members often don't label themselves caregivers when providing support for a dying relative.

  To those of us helping our loved one through difficult times, a caregiver is someone you hire to help if don’t have the time or skills to care for your loved one. I remember early on my aunt said, “have you seen or read the caregiver book I got during Bill’s illness?” Why would I need to read such a book, I was her niece helping her because I had the time and I loved her. I was not her caregiver. It really did not hit me until about 6 months in that I realized, but never verbalized, that I was her primary caregiver.



• Friday's Dear Abby column included a letter offering advice to those visiting a terminally ill patient, that offers some good suggestions.


• This Boston Globe article discusses the evolving role of a medical home, and discusses pilot projects being tried.

  When the medical home was first conceived by pediatricians about four decades ago, doctors thought it would most help patients with complex or chronic problems. Tests in several practices nationwide found that these patients treated in medical homes more often got needed care promptly, hospitalization rates dropped and patient satisfaction rose.
  
  Still, the concept didn't gain much traction until the last four years, when organizations representing 333,000 doctors, including many of the nation's primary care physicians, endorsed the medical home for all patients.



• The Compassionate Friends, a national support group which assist families following the death of a child at any age, has an upcoming conference in Nashville on July 18-20.

Deciding Whether to Age in Place

The Washington Post on Tuesday published a two-part piece about aging in place (or not). The first, from Rita Zeidner described the apprehension she felt when her parents, approaching 80, decided to move out of their home and into a retirement community. The second was written by her mother, Sylvia Zeidner. The daughter said that it took a few months for her to come to terms with her parents' decision, while her mother's view was that she and her husband were happy to be able to make the decision themselves.

As I see it, aging gracefully requires coming to terms with the cards we're dealt. And that's where timing comes in. Sooner or later my husband and I were going to have to move out of our home for health reasons. Choosing the right time meant doing it on our terms, not someone else's.

Difficulty Finding Appropriate Care for Disabled Young Adults

What happens to disabled children when they age out the programs designed to care for them? As the New York Times reports, their parents and caregiving can be left scrambling to find an appropriate facility to offer continuing care. This Wednesday's article featured the story of Sam Stabiner, who suffered from a rare form of meningitis at age 15 and is now categorized as 'medically fragile.' Stabiner is one of about 8,000 people under 30 living in a U.S. nursing home population of 1.4 million. And nursing homes, oriented to care for an aging population, are ill-prepared to meet the needs of their younger residents, the Times reports.

Follow-Up Questions from HFA's Living With Grief: Children and Adolescents Teleconference

HFA’s teleconference features some of the best-known experts in the field of grief and loss. While the goal of the program is to share new insights and tangible ideas that can be put to use to help grieving children and adolescents, HFA strives to hear from professionals who are working with children every day. Prior to the 2008 broadcast, HFA solicited questions from Site Coordinators. Many of these questions were worked into the program, but as a follow-up we have included two more here, with answers from Dr. Kenneth J. Doka.

Question: What is the best way to tell a child that a loved one has died when it happens suddenly, or if there has been no discussion about death before the death occurred?

Dr. Doka: Simply, honestly without euphemisms. I would want to find a quiet area and make sure the child had a lot of support around. One book that can be useful in explaining death is What Does that Mean? A Dictionary of Death, Dying and Grief Terms for Grieving Children and Those Who Love Them by Smith and Johnson. This book identifies more than 70 important words, explains how to pronounce them and what they mean, and offers guidance about how to use these words and discuss these subjects with children.

Question: Do you have suggestions for other books that can be used to help children deal with grief?

Dr. Doka: Books can be very effective resources in helping children and adolescents learn more about grief. Bibliotherapy can be very useful but I always treat it as a prescriptive. Books have to be “prescribed” for a particular concern -- if not they can sometimes do as much harm as good. Also remember that the books used should be developmentally appropriate for the particular child. I think it is also important that the books are used in conjunction with counseling or other support.

Listed below are a few suggestions for books divided by reader level. These books are part of a more comprehensive list found in “Bibliographical Resources—Children, Adolescents, and Grief” by Charles Corr, in Living With Grief: Children and Adolescents, Kenneth J. Doka and Amy S. Tucci, Eds., published by Hospice Foundation of America, 2008.

Picture and Activity Books for Preschoolers and Beginning Readers

Carney, K. L. (1997-2001). Barklay and Eve Activity and Coloring Book Series. Dragonfly Publishing Company, Wethersfield, CT. This series currently has eight titles. Each book tells a story and offers drawings to color or blank spaces to draw pictures about a loss-related topic that adults may find difficult to discuss with children. In each book, two curious Portuguese water dogs learn lessons like: loss and sadness do happen; those events are not their fault; it is OK to have strong feelings as long as they are expressed in constructive ways; and “we can get through anything with the love and support of family and friends” (Book 1, p. 5).

De Paola, T. (1973; 1998). Nana Upstairs and Nana Downstairs. New York: Putnam. Tommy likes visiting “Nana Upstairs” (his great-grandmother). When told that she has died, he does not believe it until he sees her empty bed. A few nights later when Tommy sees a falling star, his mother suggests that perhaps it represents a kiss from Nana who is now “upstairs” in a new way. Later, an older Tommy repeats the experience and interpretation after the death of “Nana Downstairs” (his grandmother).

Storybooks and Other Texts for Primary School Readers

Alexander, A. K. (2002). A Mural for Mamita/Un Mural Para Mamita. Omaha, NE: Centering Corporation. A young girl, her family, and the whole neighborhood plan a fiesta to celebrate the life of her grandmother who has recently died after a long illness. Mamita was well known and greatly loved in the neighborhood as the proprietor of the local bodega or store. The girl’s special contribution to the celebration is a brilliant mural painted on the side of Mamita’s store. The text of this book appears in both English and Spanish.

Bunting, E. (1999). Rudi’s Pond. New York: Clarion. While Rudi is sick, his classmates send cards and make a big “GET WELL RUDI” banner for his hospital room. After Rudi dies, the children write poems and make a memorial pond in the schoolyard that attracts a beautiful hummingbird.

Literature for Adolescent Readers

Gignoux, J. H. (1998). Some Folk Say: Stories of Life, Death, and Beyond. New York: FoulkeTale Publishing. Here are 38 legends, retold in prose and poetry, that different cultures have used to come to terms with the reality of death and hopes for life beyond the grave. Brief comments from the author introduce each section and follow each story. The book is also enlivened by 8 dramatic illustrations. A treasury of global culture to stimulate the imagination and to use in working with children.

O’Toole, D. (1995). Facing Change: Falling Apart and Coming Together Again in the Teen Years. Burnsville, NC: Compassion Books. This little book is intended to help adolescents understand loss, grief, and change, and to think about how they might respond to those experiences.

Traisman, E. S. (1992). Fire in My Heart, Ice in My Veins: A Journal for Teenagers Experiencing a Loss. Omaha, NE: Centering Corporation. This book offers a journal framework for teenagers who have had a loss. A line or two of text on each page and many small drawings offer age-appropriate prompts for this purpose.

Practicing Slow Medicine in the Elderly

Last week’s New York Times ran an article about a medical approach known as “slow medicine.” Reporter Jane Gross examined use of the approach, which is based on research developed at the Dartmouth Medical School, at a New Hampshire retirement community. Slow medicine “encourages physicians to put on the brakes when considering care that may have high risks and limited rewards for the elderly, and it educates patients and families how to push back against emergency room trips and hospitalizations designed for those with treatable illnesses, not the inevitable erosion of advanced age.”

The article noted that like hospice care, slow medicine offers a philosophy of comfort, rather than cure. The approach is becoming more common in nursing homes, but is rare for elderly living at home or in other types of assisted living.

Living a Good Life

Vince Chiles

Much of what I need to know about living a good life I learned from hospice patients and their families. People who are at the end of life, and their caregivers, tend to be a vital collection of characters. They seem to appreciate those things the rest of us take for granted. They are able to accomplish superhuman care with a level of sophistication and compassion under incredible circumstances. What they have taught me has enhanced my quality of life a hundred fold.

Each day is a new day. This is a fact of existence proven over and over again at 24-hour intervals, but when faced with a predictable and limited future, the terminal patient often faces the end of life with courage, tenacity, and grace. The reality is that we each live life one day at a time, and that we may all only have this day left. In our busy lives we often forget or ignore the fragile nature of our being. This oversight robs us of the blessing that comes from appreciating this impermanence. Hospice patients and their families have helped me acknowledge the gift of recognizing the potential in each new day. I try to start each day with a ritual of welcoming the new possibilities and opportunities I may face. This has helped me to be more present to the people and tasks that are important in my life.

There’s no time better than now to say “I love you.” In our hectic lives, now often do we say “in a minute” to someone we love? I recently received a poem written by a terminally ill child who spoke to this postponement. Now is the time to say “I love you,” to spend time with those you love, and to be present and attentive in their lives. This is an incredible challenge when personal goals, work, and relaxation seem to be more demanding or beneficial endeavors. The reality is that in the last moments of life, the most precious memories are the tender moments or milestones spent with families and friends. Nothing is more important than saying “I love you” right now.

We can do anything we put our mind to. I have witnessed adult children bathing their parents, spouses married 50 years plus provide around-the-clock care. I have heard five-year-old grandchildren utter words of wisdom that transcend the ages. I have seen friends and neighbors rally to take shifts and provide care when there was no family for the dying. I have observed hired caregivers and volunteers who have sacrificed their own needs to be present so a loved one can have an extra hour of rest. When faced with adversity, we humans rise to the occasion with incredible strength and fortitude. Whether it’s for God or our country or those we love, we can do anything we put our minds to. This ability to muster strength and fortitude in times of adversity is remarkable. We all possess this ability. When caring for a sick loved one, we often take this quality for granted. In is innate, and we can harness it any time we choose. Why wait for periods of crisis? That we can do anything we put our minds to this instant is another powerful lesson I’ve learned from my work in hospice.

These three lessons when applied each day have enhanced my overall quality of life. I and the people around me are happier and more successful as a result. Each day is a new day, say I love you now, and we can do anything we put our minds to, do not have to be lessons learned only at the end of life. They can be practiced before a terminal diagnosis to enrich living right now, and the lives of those we love. I think the hospice patients and families I have worked with recognize the gifts they give. I believe they hope that they will be used so they live on in the deeds I do. I know that they do live on.

Vince Chiles, MSW

A Gentle Death: Five Months with Hospice

Following the death of her husband, John H. Ross, in December 2002, Barbara O’Neil Ross began writing about their experience. John spent over five months in the care of Hospice of Cambridge in MA. Both John and Barbara were strong believers in the benefits of hospice care, becoming familiar with hospice through reading and the work and efforts of good friends.

After the death of Barbara’s mother in 1983, which Barbara felt was prolonged unnecessarily causing her mother additional suffering, her support for hospice intensified. She and her husband both knew that they wanted to give John “a gentle death.” Barbara’s nine-part series, A Gentle Death: Five Months with Hospice, captures the essence of hospice care and the various roles the hospice team can play in the lives of the dying and their loved ones.

“You know, this is the beginning of the end,” John’s lung specialist tells me over the phone when I ask if he will authorize hospice care. He agrees to sign the required papers predicting a life expectancy of less than six months – but seems reluctant. Awake most of the night, I agonize over the decision. Next morning I phone the primary care physician, an old friend of my husband. His response to hospice: “I’m so relieved to hear this. I was afraid you didn’t realize how serious his condition is.”

A few days later a starchy Scottish woman arrives with a mountain of forms. She pulls her chair up to John’s bed, her kind eyes looking directly into his, and says, “You know, love, your lung disease isn’t going to improve.” Her warmth and honesty put us at ease. Read the complete series here.

Changes to Medicare Hospice Wage Index Proposed

On Monday, CMS (Centers for Medicare and Medicaid Services) announced proposed changes to the hospice wage index for FY 2009. The proposed rule would phase out the annual adjustment to the wage index over a period of three years. In effect, this may reduce the payments some hospices receive from Medicare depending on where the hospice provides services, according to CMS [CMS-1548-P, p.22]. The hospice wage index was initially developed to reflect differences in area wage levels around the country. HFA does not provide policy analysis, but HFA is studying the analyses that have been provided by other organizations.

• The Medicare Update blog wrote about the new proposed rule. See the display copy here (PDF) or view the Fact Sheet here.
• The National Hospice and Palliative Care Organization (NHPCO) issued a press release detailing its opposition to the proposed rule. The release highlighted the strains hospices are under financially as the cost of gas, supplies, and pharmaceuticals increases. They also point out a recent Duke study which indicates hospice care results in lower Medicare expenditures.

"Patient satisfaction data collected by NHPCO shows the 98.5 percent of families would recommend hospice to others, reflecting the high level of family satisfaction with care. Coupled with the fact that hospice can be cost effective to Medicare, it seems illogical to put rules in place that would cut down on the care hospice providers could offer," Schumacher noted.

The result of this proposed rule would potentially mean less care to patients and family caregivers during the end of life.

"NHPCO and its affiliate, The Alliance for Care at the End of Life, recently supported bipartisan, bicameral letters from 87 Members of Congress sent to Secretary Leavitt in opposition to the proposed rule and subsequent rate cuts to hospice care. The rule release merely marks the beginning of an arduous regulatory process -- one that we will engage in to the very end to ensure that this valuable benefit to the dying is not sacrificed to short-sighted cost cutting whims," concluded Schumacher.

• The Hospice Blog covers how this proposal could affect rates.

The Hospice and Caregiving Blog will continue to post information about changes in CMS policy towards hospice reimbursement.