NHPCO Urges Congressional Intervention as CMS Finalizes Rate Cuts

The Centers for Medicare & Medicaid Services (CMS) issued its final rule on the hospice wage index for fiscal year 2009. According to the National Hospice and Palliative Care Organization (NHPCO), this regulation will cut hospice reimbursement rates by phasing out the budget neutrality adjustment. The new Medicare reimbursement cuts will be implemented on October 1. NHPCO is encouraging hospice advocates to learn more about what these rates cuts will mean, and to connect with their representatives over the August Congressional Recess to ask them to intervene before October 1.

Should Physicians Report Suspected Self-Neglect?

American Medical News, the newspaper of the American Medical Association, published an article for its ethics forum this week address the responsibility of a physician to report self-neglect in patients.

Older patients with chronic conditions can, over time, lose the ability to care for their own basic needs and safety. But how can physicians maintain respect for a patient's autonomy while assessing self-neglect?

In her conclusion, Lisa Gibbs, M.D., associate clinical professor of geriatrics at UC Irvine, concludes that physicians have a obligation to report self-neglect.

. . .physicians who see older patients -- or even patients living alone without family members or social support -- have an obligation to recognize and pursue explanations for signs and behavior that may signal self-neglect. Acting on these signals is not always comfortable -- particularly if patients' spouses or other family members are in the picture. But self-neglect exposes patients to greater risk for morbidity and mortality that can be avoided once it is recognized and managed. The physician's role is clear.

CMS Issues Final Rule on Hospice Wage Index for FY 2009

The Centers for Medicare & Medicaid Services (CMS) issued its final rule on the hospice wage index for fiscal year 2009. An accompanying press release describes the changes as providing an increase in Medicare payments for hospices. The rule takes effect October 1, 2008.

Hospices serving Medicare beneficiaries will see a 2.5 percent increase in their payments for 2009 according to a final regulation published today by CMS.

The increase in the hospice wage index is the net result of a 3.6 percent increase in the so-called “market basket” indicator of cost, offset by a 1.1 percent decrease in payments to hospices as CMS phases out a transitional payment to these providers.

As published in the Federal Register on July 31, CMS is phasing-out an adjustment to the hospice wage index that was put into place over 10 years ago to help hospices through a transition to the new wage index. Phasing-out this special adjustment will save Medicare $2.18 billion over five years. It is estimated that payments to hospices would decrease by approximately 1.1 percent for FY 2009, the first year of the three-year phase-out of the adjustment.

This final rule reflects the ongoing efforts of CMS to support beneficiary access to hospice services while maintaining responsible financial stewardship of the Medicare Trust Fund.

The National Hospice and Palliative Care Organization (NHPCO) has issued a press release arguing the changes in the wage index will result in a decrease in payments to hospices, and urges Congress to intervene before rule goes in to effect.

Book Excerpt: Physician Ethics in End-of-Life Care

The Oxford University Press blog is posting excerpts from the book, The Ethics of Surgical Practice: Cases, Dilemmas, and Resolutions. Last week's excerpt dealt with a case where an elderly patient's family has requested that the physician withhold information on the progression of his cancer. The authors discuss the various options available to the surgeon and the ethical obligations.

You have excised a pancreatic adenocarcinoma from your respected college biology professor, who is now retired and widowed at age 85. He returns for follow-up examination after 9 months. Laboratory tests and imaging confirm recurrence of the tumor, with widespread metastases. He is being treated by a psychiatrist for depression and mild dementia, but remains legally competent and maintains his own home. His three adult children, two sons and a daughter, are ardent in their request that you withhold the bad news from the patient. Radiation and chemotherapy are marginally indicated for palliation, but he will probably consent to the therapy if you refer him. The patient hasn’t asked you for results of the diagnostic tests. What should you do?

(A) Respect the family’s request. Don’t volunteer the information about prognosis, and refer for palliation.

(B) Ignore the family’s request. Tactfully tell the patient that his cancer has recurred, and seek his consent for aggressive treatment.

(C) Tell the patient only if he specifically asks about his prognosis and recommend palliative therapy.

(D) Dissemble and minimize the seriousness, even if he asks. Tell him that
some other doctors are going to mop up the remaining cancer cells.

(E) Tell the patient the truth. Provide him with appropriate referrals.

AMA Discusses Changes in Store for Hospice Physicians Under New Medicare Guidelines

The AMA's newspaper, American Medical News, examined the new Conditions of Participation for hospices participating in Medicare and discussed how the new rules may change the role of hospice physicians.

For physicians who practice in the hospice and palliative care setting, the changes likely will not drastically change the way they go about treating patients, said Porter S. Storey, MD. He's a hospital-based palliative care specialist in Boulder, Colo., and the American Academy of Hospice and Palliative Medicine's executive vice president. CMS acknowledged, for instance, that many hospice patients are already very involved in their treatment plans.

Although the changes are not revolutionary, they are evolutionary for the physicians involved in end-of-life care, and this evolution has already started, Dr. Storey said.

"They clearly intend for hospice physicians to be much more involved in the care of patients," he said. "In the past it was possible for a small hospice to just employ a doctor to come by once a week and sign papers. Those days are really over."

For example, Medicare will require, for the first time, that hospices develop quality-assessment and performance-improvement programs and that their physicians participate in the process. Most physicians will welcome this opportunity to become more involved in improving outcomes, Dr. Storey said.

Read more about the changes the new Conditions of Participation will entail for hospices here.

PBS Examines End-of-Life Discussions with Oncologists

Last month we posted a study that was reported at the American Society of Clinical Oncologists showing only one-third of cancer patients recalled discussing the end of life with their oncologist. Last week PBS' NewsHour with Jim Lehrer interviewed a cancer patient and physicians about why having these discussions can be so difficult for doctors.

Near the end of the segment, a patient whose doctor was not comfortable having this type of conversation explained why to the patient's palliative care doctor.

DR. DIANE MEIER: When I asked him about her treatment options and the pros and cons of the different treatment options, one of the treatments that he had suggested to her when I asked him about it, he said he didn't really think it would help her.

And I said, "You know, do we still want to offer her something that isn't really going to help her and might carry consequences or side effects?" And he said, "I don't want Judy to think I'm giving up on her."

And I thought that captured it perfectly, that here was a physician who cared so deeply about his patient that he wanted to convey to her his commitment to her, that he was not going to abandon her no matter what. The way he thought he had to do that was by offering treatments, regardless of how likely they were to benefit, in a way.

In addition, Dr. Barron Lerner, a professor of medicine and public health at Columbia University Medical Center in New York, describes why doctors can have difficulty in shifting the focus from treatment of the disease to provide palliation.

DR. BARRON LERNER: They feel that it's almost wrong to have that sort of discussion, that giving up is equivalent to doing something bad. And we're really not giving up here.

We're just shifting from aggressive treatment to try to kill sick cancer cells to aggressive palliation, where we're going to do as much as we can to prolong life for as long as possible and to keep the person as comfortable as possible.

Study Examines Emotional Toll of Stillbirths and Infant Deaths on Obstetricians

The July issue of Obstetrics & Gynecology included a University of Michigan Health System survey on the emotional toll of stillbirths and infant deaths. Of the 804 obstetricians who responded, three-quarters said the deaths took a large emotional toll on them personally, and nearly one in 10 considered giving up their practice.

"Our survey reveals that perinatal death has a profound effect on obstetricians, and 8 percent had considered giving up obstetrics because of the emotional difficulty of caring for patients with perinatal death," says lead author Katherine Gold, M.D., MSW, of U-M's Department of Family Medicine and Department of Obstetrics and Gynecology.

"We know that stillbirth and infant death are traumatic events for families; this study suggests that they are also traumatic for the physician."

. . .

Two-thirds of physicians supported training by formal presentations or seminars, and nearly half recommended informal gatherings for physicians to discuss difficult experiences. Many respondents suggested that a meeting with bereaved parents could serve as a useful training strategy as well as a way of helping physicians cope with their own feelings about the loss.

Lessons from a Dying Patient

Last week in the Wall Street Journal's online column, The Doctor's Office, Benjamin Brewer, MD writes about lessons he learned from a dying patient. Dr. Brewer has a family practice in the rural village of Forrest, Ill. There were also follow-up questions answered in the WSJ forums.

Even though death is an inevitable part of the human condition, it's not something that most doctors, including me, ever get too comfortable with. We get used to pushing it off until another day.

When death is approaching, the natural tendency is to avoid situations that are uncomfortable, emotionally detach, visit less often, fill our time with something that seems more productive.

It's during those times when I remind myself to slow down, sit down and listen. What I have to offer when there is nothing more that medicine can do is some comfort and companionship.

Emergency Planning for Hospices and Eldercare Agencies

The recent floods in the Midwest have highlighted the need for hospices and other agencies that provide care to the elderly to have an emergency plan in place in case of a natural disaster. This post from Caregiverlist.com provides a checklist for those providing care in an elderly person's home. Pallimed conducted an interview with David Wensel, DO, hospice & palliative medicine physician for Hospice of North Iowa. Dr. Wensel discussed the challenges of providing care to their hospice patients after the flooding.

Pallimed: What are the important lessons learned from the flooding to share with other hospice agencies as they look at their own disaster planning?

Dr. Wensel: The greatest lesson learned is to plan for the worse case scenario. As a hospice think about if you lost half your staff, some of your patients had to be evacuated, and you had no safe water. You can never plan for every possible problem that might come up, but it would be very helpful to talk through different disaster plans with your staff. You never realize how wonderful it is to wash your hands, brush your teeth or take a bath until you can't. I had never thought about all the things we do to care for patents that require water.

Hospice Social Worker Addresses Ethical Questions

In this article from The Ithaca Journal, hospice social worker Jeff Collins discusses some of the ethical questions that can arise for hospices while caring for their patients. He says these ethical questions can create 'dynamic tension' for hospice staff and the patient's family, and that ". . . this is a tension we need to accept to truly meet the patient where they are."

In our day-to-day work, most ethical questions we face turn on issues of patient choice. One fairly common example can arise in home care. Most of our patients live at home and have sufficient day-to-day care from family and friends. Sometimes, though, we will have a patient who lives alone or has a frail caregiver. Staying at home might be incredibly important to that patient, but because of growing weakness, the patient's self-care capacity may diminish and the whole situation may become riskier. Sometimes, insurance pays for the kind of custodial care that the patient needs, but that is rare. The hospice staff wants the best and safest care for the patient and starts to think of a transfer to a nursing home or the hospice residence. But the patient wants to be home and often sees a fall or even death as far less of a concern than leaving home. This sort of situation can create a great deal of dynamic tension. How much risk is too much risk, and who has the right to say that the risk is too much? What leverage do we have to impel changes, especially with a rational patient? Do we need to call Adult Protective Services? We live with this tension and explore the situation among ourselves and with the patient and family. Things usually turn out OK, in no small part because of that dynamic tension.

MedPAC's June 2008 Report to Congress

As we noted yesterday, the Medicare Payment Advisory Commission (MedPAC), an independent Congressional agency, has released its June 2008 Report to Congress. Chapter 8 of the report is dedicated to an evaluation of Medicare's hospice benefit. The report contains considerable analysis of the who is receiving and giving hospice care, mainly from 2000 through 2005. Some highlights:

• In 2000, 27.3 percent of Medicare decedents used hospice. In 2005, that number had increased to roughly 40 percent.


• The average length of stay in hospice has increased over this period. Between 1998 and 2000, the average was 48 days; between 2000 and 2005, it was 67 days.


• The provider mix of hospices has changed since 1983, when Medicare implemented the hospice benefit. In 1983, most providers were nonprofits affiliated with religious or community organization. Today, for-profit hospices are the majority.


• A small but growing number of hospice are exceeding the "hospice cap," the aggregate per patient limit on Medicare payments for hospice services. [Payments are made on a per diem basis across four general types of care.]


• In 2002, 2.6 percent of hospices exceeded the cap. In 2005, 7.8 percent exceeded it.


• Spending on the Medicare hospice benefit has increased due to greater numbers of beneficiaries, as well as longer hospice stays. The longer stays are consistent with the growth of noncancer diagnoses (such as Alzheimer's disease and dementia.)


• The report concludes a combination of provider characteristics (for-profit vs nonprofit), patient diagnoses, and market conditions were correlated to the likelihood that hospice would exceed the cap. The number of hospices exceeding the cap is still small, just under 8 percent of hospice providers in 2005. In addition, hospices exceeding the cap were more likely to be for-profit, freestanding facilities with smaller patient loads.


• Other market forces involved in longer lengths of stay may include: whether a hospice is a new entrant into the market, the number of Medicare beneficiaries per hospice provider, patients wanting the benefit for longer periods, and the financial incentives of the current payment system.


• Growth in hospice use was higher among women than men, higher among whites and blacks than those of Hispanics and Asian heritage. Use by Native Americans doubled between 2000 and 2005. Use also grew the fastest for the oldest patients, those 85 and older.

Items we noted:

• The report details the financial incentives for hospices to provider longer stays, but also states a lack of data does not allow them to "determine conclusively whether the payment system encourages or discourages the admission of certain patients to hospice on the basis of their profitability."


• It highlighted that CMS does not currently require hospices to report quality of care, but that the new Conditions of Participation will need to provide quality assessment. The report points out the challenges of implementing quality assessment and discusses options.


• The report makes this statement, "The hospice payment system should be changed to minimize incentives that make some patients more profitable than others, so that access is equal for all Medicare beneficiaries who wish to use the benefit." The report does not provide suggestions for an alternate payment system, however.

Round-Up: Awards, New Caregiving Advice Column, MedPAC report and more

This week's collection of articles, posts, and items of interest from around the web:

• The Jefferson Awards, honoring contributions through public and community service , announced its 2008 winners, including the founder of a hospice in rural Mississippi.


• The Rosalynn Carter Institute for Caregiving is now taking nominations until August 15 for its 2008 Leadership in Caregiving Award.


• Judy Bachrach, journalist and contributing editor at Vanity Fair, had launched a new website on online advice column on dying well


• The Medicare Payment Advisory Commission (MedPAC), an independent Congressional agency, has released its June 2008 Report to Congress. There is a lot of information about the Medicare hospice benefit in the report. HFA will share highlights in a future post.

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.

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.

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.

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.

Using Humor in Caring for the Terminally Ill

From the UK Journal of Clinical Nursing, Canadian researchers spent nearly 300 hours interviewing staff, patients and their families in both palliative care and intensive care units. They report that the use of humor, by patients and their caregivers, plays a vital role in "promoting team relationships and adding a human dimension to the care and support that staff provided . . ."

HFA Profiles: Pamela Gabbay, Program Director of the Mourning Star Center

Today we introduce you to Pamela Gabbay, Program Director of the Mourning Star Center for grieving children, a community service program of the Visiting Nurse Association of the Inland Counties. Like many of you who support those who grieve, Ms. Gabbay feels a true calling and connection to this important work. You can learn more about Ms. Gabbay and others like her by attending HFA's national teleconference broadcast next week. Find a site in your area to view the teleconference.
Lisa McGahey Veglahn

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Pamela Gabbay

When Pamela Gabbay, Program Director of the Mourning Star Center for grieving children, a community service program of the Visiting Nurse Association of the Inland Counties – Hospice, describes her path to helping children cope with loss, she says she has “one of those stories.” Gabbay’s parents died a few years apart, when she was in her 20s and just starting a family of her own. Through it all, she simply tried to cope, not really knowing anything about the process of grief and loss. “Six weeks after my mom died,” Gabbay remembers, “I was in a deep spiritual place of sadness and despair, but needing hope and guidance. I told myself, ‘If I ever get out of this pain, I will dedicate my life to helping other people through their own pain’.” And from that moment forward, that is exactly what she has done. She went back to school and began to learn as much as she could about counseling those who are grieving. And then came what she calls the “struck-by-lightning moment.”

Through a contact at school, she heard about a children’s grief center, the Mourning Star Center, that was opening in her community. Not only was she struck by the proximity of the center to her home, but even the name held meaning for her. “My mother had always talked fondly about a boat she had worked on—the Morning Star!” Gabbay said. “I signed on as the first volunteer at the center, and on that first day I knew I was home.”

One of the most wonderful and surprising elements of Gabbay’s work is witnessing the level of compassion and support that the children and teenagers offer to each other. She remembers the conversation between two boys, both of whom had 14-year-old brothers who had died, sharing what their families had each done with their brothers’ belongings. “Watching how the teens make new friends, how they lean on each other and show true compassion for one another, is a true gift,” and is an ongoing reminder of the importance of peer support, Gabbay said.

Of course, supporting grieving children takes much more than peer support. Gabbay and the others on staff at Mourning Star provide a wide range of activities and programming, much of it focusing on how to deal with “special days,” like holidays or birthdays. And as kids grow and change, their needs change as well. As Gabbay points out, the transition is “huge for that 8th-grader who is becoming a high-school freshman without Mom around,” and that same student may need renewed support when facing graduation four years later.

The Mourning Star Center runs concurrent parent groups and Gabbay strongly encourages parents to learn as much about what kids may be facing in grief and loss. Parents of grieving children and teens, of course, often worry that their grieving child may not be doing well in school. Gabbay often uses the analogy of an Etch-a-Sketch, the children’s toy that one draws on and then shakes up to erase the picture. “A kid may be drawing a picture, having fun,” she says, and then when a parent dies, it’s as if “someone comes along and shakes it all up, and all of the pictures and information is gone.” These stories, she says, can often be a way to help adults find a better understanding of what kids may be going through.

These examples can also be very useful when educating teachers and school administrators about grief and loss, Gabbay has found. Just as grief may affect adults cognitively, the same can be true for young people. So a grieving teenager may not be grasping algebra concepts cognitively, and at the same time may be asking the question, “Why does algebra matter right now, anyway?” Gabbay is enthusiastic about the “fabulous, caring individuals” in her local school system and has found the schools to be open about setting up grief groups and accessing the resources that her grief center provides. And she has found that the importance of this not only helps children cope, but that young people will remember those teachers who reacted to their loss in a supportive and helpful way.

When Gabbay speaks to teachers or other adults who want to help children and adolescents cope with loss, one point she always makes is that young people experiencing loss often feel “invisible;” that they feel they are not seen or heard in the same way. Yet she also finds that, while younger children need to be “seen and heard,” teens may prefer that others do not directly address their loss. Gabbay’s advice is to always ask the young person what he or she feels would be most helpful.

One experience that Gabbay has found particularly “amazing—one of the best weekends of my life,” was when she directed Camp Erin, an overnight grief camp funded by the Moyer Foundation. Forty-six kids attended the two –day camp in the mountains, as well as 50 volunteers—“all of whom expressed enthusiasm and interest in attending next year’s summer session the day we ended!” Gabbay recounts. Gabbay describes the arc that she witnessed in the kids who attended. “When they arrived on Friday, they were somewhat trepidatious—they were getting to know each other, asking questions. By mid-day Saturday you could already see a change—they weren’t just bonding with each other, but were actively working on processing their individual grief experiences. You could see a real awareness of the concept that they weren’t ‘alone’—the realization that others understood. For many, it literally added a spring in their step!” By Saturday night’s ceremony, in which each child lit a luminary for the person who had died and placed it in a boat which was then set afloat on the lake, Gabbay said that the adults could see that, “it was as though a burden had been lifted, if even just for that one night.” Many parents made similar observations when reunited with their children on Sunday. Gabbay already has plans to expand participation in this summer’s camp, and the kids at Mourning Star are still talking about it as well.

While Gabbay clearly has found her calling in her work of helping young people cope with loss, she is quick to acknowledge that the work can be difficult. She feels fortunate to work with a strong team at the Mourning Star Center, a team that can “lean on each other in a meaningful way.” She emphasizes how important it is that they can stop for a hug or to talk, recognizing that “it’s okay to be honest and real about how hard it can be to hear these stories every day.” Gabbay also began an ADEC (Association for Death Education and Counseling) chapter in her area. She did this partly out of the need to have a forum for local professionals to network and share ideas, she says, but also because of the need to be with others who, even with “just a look,” can offer understanding and support.

Gabbay recognizes the importance of self-care. A self-professed “huge music fan,” she is sure to attend at least ten concerts every year, and even books passage on a rock-and-roll cruise. One of her favorite activities each week is to “turn up the music, hop into the pool” with her two teenagers, and just “act silly.” These moments help sustain Gabbay, someone who truly feels that “once you find your calling, you can’t stop!

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Pamela Gabbay, M.A., FT, was awarded the Fellow in Thanatology by the Association for Death Education and Counseling and is a Certified Bereavement Counselor. She earned her B.A. in Psychology from California State University, San Bernardino and her M.A. in Psychology from Claremont Graduate University. Pamela is the Program Director of The Mourning Star Center for grieving children in Palm Desert, California. The Mourning Star Center is a community service program of The Visiting Nurse Association of the Inland Counties - Hospice.

Pamela is the Camp Coordinator for Camp Erin - Palm Springs, the first Camp Erin in California. This camp is a free camp for grieving children created in partnership with The Mourning Star Center and The Moyer Foundation. Pamela is also President of the California Chapter of the Association for Death Education and Counseling (ADEC So Cal). ADEC So Cal is an organization dedicated to promoting excellence in death education. Additionally, Pamela is co-owner of Grief Posters.com, a poster company that produces sensitive and educational grief-related posters.

Huge Variations in Cost of End-of-Life Care Across the United States

The Dartmouth Institute for Health Policy & Clinical Practice published its annual Atlas of Health Care. The entire report and executive summary is available for download from their website. The 2008 edition examines how care for Medicare beneficiaries with serious chronic illnesses varies across U.S. states, regions, and hospitals, in the patient's last two years of life. It includes data through 2005 as well as all sectors of care covered by Medicare: inpatient hospital care, outpatient services, nursing, home health care and hospice services.

The Dartmouth study found wide variations in the the amount and cost of care that Medicare patients receive in their last two years. While the national average was $46,412, the cost of care among the top five ranked teaching hospitals (by U.S. News & World Report) ranged from a high of $93,842 at U.C.L.A.'s Medical Center to $53,432 at the Mayo Clinic's St. Mary's Hospital in Rochester. The executive summary explains that these variations in spending are mostly due to the differences in "supply-sensitive care." Put simply, in areas where there are more hospital beds and more physicians available per capita, there will be higher admission rates and more physician visits. Nearly 55% of total spending takes place in acute care hospital settings. The authors report that over the past decade, more and more research shows that higher spending and higher use care does not equate to better care.

The study also addressed the belief that expanding access to non-acute care sectors (skilled nursing or rehabilitation facilities, home health services, or hospices) would save money. They found this not to be the case except for a small decrease in overall for those using hospice care. (A study by Duke University in November 2007 found Medicare savings for hospice vs. non-hospice users, while also giving patients a greater quality of life.) The executive summary states that currently, the United States has invested in certain types of care with the "assumption that more intensive management of the chronically ill results in better health outcomes and greater patient satisfaction. That assumption is being challenged by emerging clinical strategies designed to improve care: the hospice and palliative care movements, the growing chronic disease management industry, and population-based chronic care models that emphasize continuous and coordinated management of patients over time and among sectors of care."

Other articles covering the report:
The New York Times
The Wall Street Journal (requires subscription)
WSJ's Health Blog
AP state-by-state breakdown
The Salt Lake Tribune (examines differences between hospitals within Utah)

Future Lawyers and Doctors Learn about End-of-Life Issues Together

In California, students from the McGeorge School of Law and UC Davis' medical school met for two class sessions on dealing with the rights of the terminally ill. As reported by the Sacramento Bee, 40 law students and 90 medical students participated in the classes.

"There's room for improved understanding between doctors and lawyers generally," said (Ned)Spurgeon, who teaches health law and elder law and policy at McGeorge. ". . . Hopefully, this will mean better-educated doctors and lawyers with respect to enabling patients to have their surrogates make better decisions."

The discussions that arose show that the students do have a lot to discuss. Some pondered whether patients anxiety could be lessened by not using direct terminology like the word "death" and others questioned a mock patient's competency when she expressed a desire not to receive certain treatments. A key goal was to learn how to help patients make end-of-life decisions, and decide who will act as their surrogate when they no longer can do it themselves.

British Study Urges Caution in Antipsychotic Drug Use for Dementia Patients

A study appearing in PLoS Medicine from British researchers at King's College Hospital in London, shows little or no benefit to the use of antipsychotic drugs in patients with dementia. The study examined 165 patients already on the medications and divided them in to two groups, one which continued treatment and another that received a placebo. Most patients who received the placebo had "no overall detrimental effect on functional and cognitive status."

Last December, the Wall Street Journal published two articles about antipsychotic drug use in dementia patients. One article looked at the abuse of the drugs for patients residing in nursing homes. The second article examined efforts by those facilities to wean patients off the drugs and offer other alternatives to control their symptoms.

Missing the Chance to Talk Openly with Dying Patients

In this essay appearing in the Journal of Clinical Oncology, Dr. Bruce H. Campbell discusses his anxiety and apprehension discussing the conditions his terminally ill patient might encounter at the time of death. Although his patient, suffering from thyroid cancer, asks questions about how he will die, Dr. Campbell finds it difficult to directly address his concerns and is frustrated that he does not know how to handle the situation. An accompanying commentary by Drs. Timothy J. Moynihan, Charles F. von Gunten, addresses the missed opportunity Dr. Campbell had to reassure his patient. They explain how they would have handled the interaction:

We both wanted to be standing next to Dr Campbell in this scenario,to help with some possible responses. After the patient asked how he would die, Dr Campbell gently described how patients usually die, yet there was a missed opportunity. One of us might have said, "Tell us what you are most afraid of." Most junior faculty can’t imagine asking something like this, which seems to invite more anxiety and discomfort for both the patient and the doctor. In contrast, it is usually therapeutic because no one can reassure the patient until he knows what is really frightening him.

We expect the patient might have responded, "I don’t want to suffocate to death!" Or, "I don’t want to bleed to death!" "I don’t want my family to witness this." He might also have cried.

We would model being silent in the presence of the patient's distress, which conveys the message that we won’t run away even if the going gets tough. We would reach out, silently, to touch his arm. We would both be seated. When the patient stopped crying we would then say, "Many patients feel just like you do. Fortunately, it doesn’t have to be that way. Would it help to talk about what might happen, and what we’d do so you won’t suffer? Some patients just want to be reassured that the doctor will manage things, but most are reassured by talking about their worst nightmares, and making a plan. How is it for you?"

If the patient wanted, we would discuss aggressive comfort measures, including aggressive sedation if something overwhelming happens. We would firmly tell him he won’t die feeling like he is suffocating. While we can’t control the cancer, we CAN control how he feels. We can also control the environment so his family and the nursing staff won’t be traumatized.

After the interaction, we’d join Dr Campbell in the hall with his colleagues and the nurses, and debrief the interaction in order to meet the team's personal self-care needs. We’d listen while they told us how uncomfortable they felt. We’d tell stories about similar situations when we felt helpless, and how we got to the place where we don’t feel that way anymore. We’d rehearse what to do in the case of worst scenarios, supervise the writing of the orders, and make sure the nurses knew what to do and whom to call . . .

Weinberg Foundation Offering Family and Informal Caregiver Support Grants

The Harry and Jeanette Weinberg Foundation, based in Baltimore, announced a new grants programs aimed at supporting caregivers of the elderly. The Foundation plans to award 12 to 20 grants ranging from $300,000 to $900,000 to nonprofit community groups, who will also need to provide a local match. Non-profit 501(c)(3) organizations, including aging and human service agencies, faith-based and other community-based organizations, tribal organizations, and units of local government are encouraged to apply. For more information, see their website, www.hjweinbergfoundation.org.

Providing Culturally Sensitive Nursing Care

Marilyn Hardy Bougere, MSN, RN, CNS, a nursing instructor at Jacksonville State University in Alabama, provides an article for MinorityNurses.com, addressing how understanding how cultural difference effect a patient experiencing grief, can enhance nursing care. The article itself provides an excellent review of some older literature. Following the article, there are two fictionalized case studies about providing culturally and linguistically competent nursing care. HFA's 2009 Living with Grief teleconference will focus on multiculturalism and end-of-life care.

"As the racial, ethnic and cultural diversity of the U.S. population continues to increase, there is an ever-growing need for the health care profession to become culturally competent in all aspects of care delivery—and this includes the care we provide to grieving patients and their families. A recently published article on cultural diversity and grief states that the need for culturally sensitive grief/bereavement educators and counselors is on the rise and that health care providers must continue to expand their knowledge of the many ways that people grieve."

A Team Approach to Reducing Bedsores in Nursing Homes

Today's New York Times reported on a collaborative program carried out by 52 nursing homes around the country, sponsored by the Centers for Medicare and Medicaid Services. The team effort, involving not only nursing staff, but laundry workers, nutritionists, and maintenance workers, reduced the incidence of severe bedsores (medically known as pressure ulcers) by 69 percent. Experts say two million Americans acquire pressure ulcers each year.

"Dr. Horn, of the Institute for Clinical Outcomes Research, praised the collaborative as 'the first major national effort driven by Medicare to reduce pressure ulcers.' But she said that better outcomes could be achieved if more nursing homes improved their documentation, so that all of the information on a given resident, including details on eating, urinary and bowel function, appeared on a single sheet, with key reminders to nursing assistants and other staff members about best practices.

Institutional change and work-flow redesign are critical, she added, given the high rates of turnover in nursing home staff across the country."

Help for Hospice Angels

Vince Chiles

“You’re such an angel. . . You were sent by God. . . You’re so special, thank you so much.” These are the kinds of comments that hospice nurses, social workers, home health aides, chaplains, and volunteers hear everyday from their patients and patients’ families. Hospice staff have been compared to angels, but unlike their heavenly comparisons are mortal, and as a result are affected by the work they do daily..

Being in close proximity to the terminally ill and dying affects the hospice professional in profound emotional, social, spiritual and psychological ways. It is next to impossible not to form some type of emotional bond to hospice patients, and when they die, the professional and volunteer grieves. The hospice professional and volunteer must temper social interactions with family and friends who aren’t as comfortable talking about death and dying, and might feel as if they, as hospice workers, don’t have people who understand their needs. By working so closely to death, one will naturally question his or her own religious and/or spiritual beliefs, and sometimes wrestle with doubt and uncertainty. As the hospice professional searches for good answers for all the suffering and pain she witnesses, she may also experience psychological stress from this work.

It is important that the seasoned hospice professional develop an arsenal of self-care techniques to combat the potential occupational hazards. I feel the best self-care techniques are those that are natural, effortless and produce instant benefit. By natural I mean that these are skills you already possess. (You may be unaware of their self-care power.) By effortless I mean that these skills require little or no physical effort to perform. Finally, by instant I mean that they only require a few seconds or minutes to perform. Self-care skills that combine these three elements are easy to use and to benefit from. Some examples:

Breathe Deeply: Deep breathing is a great example of a self-care technique that meets the above criteria. Breathing is natural; we all do it, and it is often effortless. When feeling stressed or burdened by the emotional pressures of hospice work, this technique can be used for short periods of time, in a few seconds to minutes, and it produces quick benefits. You perform this exercise by focusing your attention on inhaling and exhaling, and then comfortably allowing each exchange to last three to four seconds. Deep breathing helps to increase oxygen flow to your brain, which allows you to clear your mind and feel refreshed. As a result, deep breathing is a natural, effortless, and instant self-care technique.

Laugh Out Loud: Another easy and fun self-care technique is to laugh longer and harder each time someone tells a joke or a funny story. Laughing has many benefits, from stimulating the immune system to improving one’s mood. Laughing at someone else’s joke improves inter-personal relations, and also helps to promote the other person’s mood. Laughing is natural, it’s simple, and it’s instant. It may feel a little awkward at first, but after you experience its benefits, it will be contagious.

Practice Kindness: We’ve all seen the bumper sticker “Practice Random Acts of Kindness.” Being kind by holding a door open, or by complimenting a store clerk on good service, takes only seconds to do, but kindness can go a long way to promote one’s well-being. We may not think kindness is natural, but it is - our survival depends on it. Kind deeds can be effortless, and the benefits are instant in improving the outlooks of the giver and receiver.

Feel Grateful: Remind yourself to feel grateful everyday. Feel gratitude for the air you breathe, your home, your loved ones, and your life. Gratitude is effortless. It requires only a momentary reflection on what you appreciate in your life. Feeling gratitude is a great self-care technique because it can be done by reflecting on five to 10 things you appreciate today. The rewards of practicing gratitude include a better outlook and increased sense of satisfaction with oneself.

Do you have a self-care technique that you have found especially helpful and easy to do? If so, please share it with us here.

Vince Chiles, MSW

Disturbing Report of Prescription Drug Abuse in Nursing Homes

The Wall Street Journal published an article last week on the use of antipsychotic drugs to subdue patients suffering from Alzheimer's disease and other dementias in nursing homes. The article points out the challenges faced by nursing homes in caring for these patients. A 1987 federal law limits how and when a patient can be physically or chemically restrained. Also, according to the article, the increase in dementia patients have left staff overburdened. The article focuses on New York state and its efforts to examine how antipsychotic drugs are being used in nursing homes there.

California Fire Update: HFA Responds with Donation

(Nov. 1) – In response to financial needs of hospice patients and families affected by recent wildfires in Southern California, Hospice Foundation of America will donate $5000 to the California Hospice Families Relief Fund to help hospice families with extraordinary expenses incurred as a result of the fires.

The California Hospice Families Relief Fund, managed by the California Hospice Foundation (CHF), is a restricted fund created to ease the financial burden of hospice patients and families whose homes were in the path of the fires. Unanticipated expenses for the families include medical transportation to relocate patients living in evacuated or burned areas, special professional cleaning to remove fire residue from homes of patients with compromised respiratory systems, and lost wages for family caregivers who helped to evacuate or stayed at the bedside of their loved ones during the crisis.

“These families are in the midst of one of the most emotionally difficult periods possible – the impending loss of a mother, father, spouse or other family member. In the aftermath of the fire, they are urgently trying to restore a sense of normalcy for their loved one’s comfort. They were already facing special expenses but now face new financial pressure,” said Laura Miller, past chair of the California Hospice Foundation and president and CEO of The Elizabeth Hospice, which serves some of the hardest hit areas in North San Diego County,

Individuals may send tax deductible donations to:

California Hospice Families Relief Fund
c/o California Hospice Foundation
3841 North Freeway Blvd.
Suite 225
Sacramento, CA 95834

One hundred percent of the donations made to the relief fund will go to affected families. Administrative costs are being covered by CHF. A three-person panel will review applications for financial assistance and distribute funds appropriately.

For more information on the California Hospice Families Relief Fund, call 888-252-1010, or visit the California Hospice Foundation’s website, www.hospicefoundation.info. The California Hospice Foundation is a registered 501(c)(3) charity.

Two Leaders in Pain Management and EOL Care Receive Awards

On October 24, Kathleen M. Foley, MD, of Memorial Sloan-Kettering Cancer Center in New York City, and Perry Fine, MD, of the University of Utah School of Medicine, received the Josefina Magno Excellence in Education and Leadership Award for 2007 at the 9th Annual Josefina Magno Conference on Palliative Care. The award recognizes contributors to the science of pain and symptom management. The award and professional conference are named for the physician credited with pioneering the modern concept of hospice and palliative care in the United States in the 1970s. It is sponsored by Capital Hospice, which was founded by Dr. Josefina Magno as Hospice of Northern Virginia in 1977.

Dr. Foley spoke with the Hospice Foundation of America about her work at Memorial Sloan-Kettering and the changes that she has seen in pain management at the end of life.

The Controversy Over Medical Futility Laws in Texas

The New England Journal of Medicine July 2007 issue included an article by Robert D. Truog, M.D., addressing the ethics behind the Texas Advance Directives Act. This act allows hospitals to withdraw life support if an ethics committee has determined that life support is medically inappropriate, as long as the hospital gives 10-day notice to the family and attempts to find an alternate provider. The article addresses some of the ethical considerations that go into making such a determination. An October 11, 2007 Letter to the Editor in the Journal by Robert L. Fine, M.D., a physician and clinical ethicist who was involved in the development and use of the Act, attempts to refine some of Truog arguments and argues for the support the Texas act, stating that, ". . .the Texas process remains the best approach when family requests conflict with professional obligations at the end of life."

When is Medication Appropriate for Grief? Dr. Kenneth Doka Shares his Thoughts

Dr. Kenneth J. Doka

A New York Times blog entry dated October 10 ("For Some Bereaved, Pain Pills Without End") reports that Columbia University researchers are studying anti-anxiety prescription drug use by the elderly. Although not specifically looking for trends in the treatment of bereavement, researchers inadvertently discovered that over half of the 33 Philadelphia-area doctors included in the study indicated they had prescribed potentially addictive anti-anxiety drugs specifically for bereavement. In addition, researchers interviewed 50 elderly long-term users of the drugs. Twenty percent said they were prescribed these drugs for bereavement, but then never ceased using the drugs, resulting in an average use of nine years.

As a professor of gerontology, certified thanatologist, certified counselor and minister, I am often asked if people who are grieving should receive medication for their grief.

My answer is never black and white, because the alternatives are really more nuanced. Whether grief or some other condition, it is medically irresponsible to prescribe any drug – antibiotics, pain relievers, psychotropic drugs -- without doing a full assessment of a patient and the situation. Medications should be used when grief is highly disabling, that is, when that patient (after the initial period of mourning) is not sleeping, eating, or able to function in his or her normal role, such as caring for children or going to work. And, if medication is prescribed, it should always be prescribed along with therapy, but never instead of therapy.

In the case of grief, the assessment should not be based on the nature of one’s loss but how the person is coping with a loss. If the measure of need is based on the nature of loss, why not give funeral directors the ability to write prescriptions?

Ken Doka, PhD, MDiv, is a senior consultant to HFA and a professor of gerontology at the College of New Rochelle in New York.

Tension Exists Between Physicians and Patients, Particularly at the End of Life

This Boston Globe article addresses the tensions that can develop between physicians, their patients, and their patients' families. These conflicts can be especially daunting when treating a patient with a serious illness or at the end-of-life. The article points to a growing conflict as the nature of the doctor-patient relationship evolves.

Samira K. Beckwith, LCSW, CHE, looks at these conflicts (PDF), as well as familial disagreements in general, for HFA's book, Living With Grief: Ethical Dilemmas and End-of-Life Care. She also discusses the role of hospice in resolving these conflicts.

A Family Practice Physician in Maine Discusses the Emotional Impact of Caring for Patients at the End-of-Life

An October 3, 2007 article in The Lincoln County News examines the impact of providing end-of-life care on physicians. Dr. Chip Teel, discusses how he and his patients navigate this phase of life. Teel states, “It is an enormous privilege to be a part of someone’s end of life."

The Mental Health Effects of Caregiving

A blog post on MSCaregiver.com questions the idea that caring for those with a serious impairment, in this case multiple sclerosis, impacts caregivers' mental health more negatively than the other stressors of life. In fact, the blog asserts that caregivers mental health is not worse than the general population.

Caregivers do need to pay attention to their overall health and seek assistance when needed. View some tools for caregivers, including a caregiver self-assessment questionnaire, at HFA's Caregiver's Corner.

Spirituality in Medical Curriculum

Along with memorizing body parts and learning to diagnose and treat diseases, students in the School of Medicine and Biomedical Sciences are being introduced this fall to a new set of courses incorporating spirituality into their training to become physicians. Fourth year students can select a popular elective, "Faith, Medicine, and End-of-Life Care."

Clergy and faith leaders can also enhance their understanding of issues related to end-of- life care. Hospice College of America offers an online course developed by the Hospice Foundation of America in cooperation with the Florida Department of Elder Affairs and The Center on Aging at Florida International University. Engaging Faith Communities in End-Of-Life Care.

The Words We Use to Describe Caregiving

Sharon K. Brothers, MSW, blogs on the "Caregiver's Language of Caring" and how words reflect a caregiver's feelings about the people they care for. Her blog, Caregiving at the Crossroads, offers a personal look at caregiving training.

HFA's Caregiver's Corner offers tools and support for caregivers at each step of the caregiving journey.

Posted September 4, 2007

The Physician's Role at the End-Of-Life

American Medical News published an article about the physician role in offering comfort to a terminally ill patient. The article discusses a variety of studies that have shown that greater communication by physician can help patients dealing with a terminal illness and help families through bereavement. Doctors who remain more distant can leave families feeling abandoned.

Learn more about the role of caregivers in preparing for the end-of-life from HFA's 2007 Teleconference, Living With Grief: Before and After the Death.

Published September 3, 2007