An Inordinate Response to Loss

Elizabeth Uppman

A dappled summer morning, a public park, a cluster of children – and me, screaming with rage. The boy I was screaming at was not even my own. I had caught him holding a bucket of water over my daughter’s sandcastle, and fury had lit me up like an avenging angel.

Through my yelling I could observe everything around me, as if the mild-mannered, everyday me were looking out from inside the new, furious one. I watched the other mothers gather their children, carefully avoiding my eyes. The boy’s mother, who had spent the last twenty minutes saying it was time to go (“…and I mean it this time!”), finally got off her park bench, grabbed him by the arm, and hustled him out of there. He grinned at me as she pulled him away, a cocky grin. But my daughter was smiling at me over the top of her sandcastle, so I went back to my magazine, satisfied.

It wasn’t until late that night that I considered the reaction of those other mothers, how wary they were of me – me! I wondered, for the first time, what had possessed me. Where did all that anger come from? Might it have had anything to do with grief?

I remembered that day in the park when I read this particularly thoughtful sports column. King Kaufman at Salon.com explores the outpouring of grief over the sudden death of Washington Redskins safety Sean Taylor. Interviewing a grief counselor, Kaufman asks: “OK, so let’s say I'm a fan of the Washington team and, hypothetically, let’s say my mom died five years ago. And I handled it pretty well. Now I hear about Sean Taylor, a person I never met and don’t know very much about... And I’ve gone to pieces over it. Am I making that up or does that happen?”

The counselor’s answer: “It definitely happens. And as grief counselors, when we see someone have an inordinate response to a loss, we're oftentimes looking at what else is going on.”

An inordinate response to a loss. Well.

A year and a half before that lovely, dappled morning, my 3-year-old son had died of pneumonia. I thought I had handled it pretty well. The nausea was more or less gone, as was the barely constrainable impulse to talk about him, and me, and the world of loss we had lived through. I could now trust myself to appear in public with all my buttons buttoned, and I usually remembered what day of the week it was and how to put gas in the car.

But that upraised bucket was too much. The universe had shown me, definitively, how easy it is to hurt small children – my children. I simply could not to allow any more of it.

I sometimes think of hunting down those mothers in the park to apologize for my craziness. I would tell them no, I’m not crazy – just grieving. Sometimes it looks like the same thing.

Elizabeth Uppman

Health and Human Services Makes Report on Advance Directives Available Online

The U.S. Department of Health and Human Services recently posted a June 2007 report online, “Literature Review on Advance Directives.” Conducted by the RAND Corporation, the report examines medical literature on the use of advance directives, whether they have met their intended goals, and what can be done to enhance the use and value of advance directives and advance care planning. The report also reviews past efforts to promote advance directives, including the national Last Acts campaign (funded by the Robert Wood Johnson Foundation) which ended in 2005 and other state-specific programs.

The conclusions of the report are not encouraging. The reports states, “. . . evidence suggests that end-of-life decision making in the United States is often poorly implemented with patients receiving care inconsistent with preferences toward the end of life, a poor match of aggressive care with prognosis, undue suffering, and wasted resources.” Advance directives are not helping improve patient care the way they were intended, but they offer hope that there is promise if we continue to investigate and learn from the most successful models of advance care planning.

The report may also be downloaded as a PDF file.

Study to Look at End-Of-Life Decisions Made by Rural African-Americans

Cathy Campbell, an assistant professor at the University of Virginia's School of Nursing, is conducting a study into how African-Americans in rural Virginia make end-of-life decisions. One goal of the study is to develop support mechanisms for these families. Professor Campbell is looking for more participants.

When Faced With the Challenges of Caregiving, Find a Mentor

Dorian Martin, who cared for her mother and grandmother, offers a wonderful suggestion to those struggling with the new role of caregiver. Find a mentor to help you through. Look to people you already know who have assisted their loved ones and ask for their advice and their support. Read the full article at OurAlzheimer's.com.

Promoting Hospice to Hispanics

This article appearing in the Yakima Herald-Republic (Yakima, Washington) addresses hospice's effort to reach out to Hispanics and other minority groups. In Yakima, efforts to share information with Hispanics have centered on meeting with clergy, holding seminars, and using Spanish-language radio shows to reach Spanish-speaking residents.

Costs of Providing Elder Care Are Higher Than Previously Thought

The New York Times reports on the first in-depth study of the expenses Americans spend to care for aging parents or spouses. The study, conducted by the National Alliance for Caregiving, says those costs average $5,531 per year. According to the article, the report is being released today and will be part of a Capitol Hill briefing this week. The complete report (PDF) is available here.

Caring for an Ailing Spouse In Arizona Has Become More Financially Viable

The Arizona Daily Star reported this weekend that the Arizona Long Term Care System, the state's Medicaid program for the elderly and disabled, will now pay spouses to provide basic health care for husbands or wives. In October, the state received a waiver from the federal government, making the support possible. How much spouses are paid is determined by local caregiving rates, which in Arizona average around $10 per hour.

In October, we posted a report about the financial costs of caregiving that stated Vermont had also received a waiver from Medicaid that enables the state to pay spouses who provide care. In addition, Oregon has paid spousal caregivers for over a decade from another state fund, but this year began running their program through Medicaid. We will make sure to post any additional reports from other states as we learn about them.

Three Essays on Caregiving

Rochester's Democrat and Chronicle posted three guest essays last Sunday on the challenges and joys of caregiving. The cover a range of scenarios and offer insight into the caregiving experience.

Switching roles: Transitioning from giving help to receiving it

Putting to use the gerontology he had taught

Rising to the challenge of caring for elders

Coping With Grief During the Holidays

The holidays are often a difficult time for those who are bereaved and coping with loss. A common question asked by those mourning a loved one or struggling to make sense of other losses is, "How can I get through the holidays?" There is no single answer of what one should or shouldn't do. We offer one guiding principle: do what is comfortable.

The key to coping with grief during the holidays is to find the way that is right for you. Some people find it helpful to be with family and friends, emphasizing the familiar. Others may wish to avoid old traditions and try something different. Others will find new ways to acknowledge the season.

Some suggestions for coping:

• Plan for the approaching holidays. This might be a difficult time for you. The additional stress may affect you emotionally, cognitively, and physically; this is a normal reaction. Be prepared.
• Recognize that the holidays might not be the same. Expecting everything to seem the same might lead to disappointment. Doing things a bit differently can acknowledge the change while preserving continuity with the past.
• Be careful not to isolate yourself. It's all right to take time for yourself but don't cut yourself off from the support of family and friends.
• The holidays may affect other family members. Talk over your plans and share your feelings. Respect other's choices and needs, and compromise if necessary.
• Avoid additional stress. Decide what you really want to do, and what can be avoided.

The Wounded Warrior--Special Issues for Veterans at the End of Life

700,000 U.S. veterans die each year. For many, the training they received as soldiers and the battles they faced in combat greatly influence their end-of-life experiences. Deborah Grassman, Hospice Coordinator, Bay Pines VA Medical Center in St. Petersburg FL, has pioneered identifying the unique experience of veterans (PDF) at the end of life.

With Alzheimer's Disease, the Losses Come Sooner

Elizabeth Uppman

Recent news reports tell the awkward last chapter of the love story between former Supreme Court justice Sandra Day O’Connor and her husband, John O’Connor. He was diagnosed with Alzheimer’s disease 17 years ago. The family recently placed him in a long-term care facility, where he has fallen in love with a woman who lives at the same facility. The O’Connors’ son, Scott, says his father acts like “a teenager in love… sitting on the porch swing holding hands.”

Alzheimer’s experts say these kinds of attachments are to be expected, and that the patient is not to blame. Kathleen Waldron, interim director of the ASU West School of Aging and Lifespan Development, says “A person who has dementia does not live in the same world the rest of us live in, and their reality may be completely different. You cannot take anything a person does with dementia personally.”

Wise words, but not easy to live by.

My grandmother has had Alzheimer’s for almost as long as John O’Connor. When I visit her at the nursing home, I wheel her down to the quiet room and sit facing her. I rub lotion into her hands, ask her how her day is. When nobody else is around, I sing. Grandma looks at me with a puzzled expression. Her eyes are curious but blank. She was once a modest person, shy and self-effacing. Now she stares straight at me, and I stare back. She doesn’t mind the kind of directness that once would have been unthinkable. She doesn’t hide anything because she has nothing left to hide.

It must be difficult for Sandra Day O’Connor to see her husband holding hands with another woman, just as it’s difficult for me to withstand the directness of my grandmother’s stare. This is not the way the person I love is supposed to behave. It’s sad – devastating, really – the things a disease can take away from us, things we thought were absolute. It makes you wonder, grimly, where the bottom line is, where is hidden that last and most precious thing that makes us ourselves, and whether that thing can be taken away, too.

Every once in a while my grandmother gives me what I’m waiting for: a smile. She smiles the way she always did, shruggingly, in a “well, here we are again” kind of way. She used to smile this way at the mistakes we kids made, the jelly on the carpet, the gum in the doll’s hair. Well, here we are again, her smile would say, and then she would hunker down and fix it.

I wish I could do the same for her – I wish I could hunker down and fix the Alzheimer’s that is erasing her story, line by line.

Elizabeth Uppman

Grief and Dementia: Twice the Loss

How do you help someone through losing a person twice? I don't know, but I’m trying to figure it out. I guess by doing what I have been doing—being here for him, letting him talk when he needs to, being silent when he needs that, and through it all, just letting him know that he doesn't always have to be strong.

Earlier this year, it was time for my boyfriend's family to decide whether or not to seek hospice care for "Granny." She was 96 years old, in frail condition, and suffering from dementia; to me, it didn't seem that hard of a decision. But she wasn't my grandmother and, while I am a part of his family as he is part of mine, this simply wasn’t my decision to make. When his family did elect for hospice services, those who weren't against the decision, my boyfriend included, acknowledged that hospice was in Granny’s best interest.

I never knew Granny; my only knowledge of the woman she was came through her grandson's words. She was clearly a very special woman, and he had already mourned her loss, as her personality and her memories—what made her the woman she had been—were gone. However, with the acknowledgment that the Granny they had known was gone, on my boyfriend's part, at least, there was a great deal of guilt, and a big part of that was due to the belief that when Granny did die, there would be no more room for grief. I never believed, not even for a second, that he was right, but instead of trying to convince him there would be grief when her body died, I tried to help him come to peace with the fact that since she was already gone, there was no reason to feel guilt, and it did not make him a bad person. I'm still not sure if I handled it right, but telling him there was no reason to feel guilt because he would grieve seemed unnecessarily cruel at that point.

Dementia is a cruel disease. It forces you to lose someone twice, first when the personality goes and then when the body dies. Seeing it as a very concerned observer was hard, experiencing the actual pain of losing someone twice must be excruciating. When Granny's body died it wasn’t much more than an empty vessel, but the body was still the last living connection to the woman she had been, and I was right, horribly right. He did grieve over the loss. He's not a man who talks much about his feelings, so the night she died, I just sat there next to him and held his hand while we watched his favorite movie. At first, I worried about him, as there was no sign of grief, and I wondered if he had been right, after all. But what initially seemed to be a lack of grief was actually a kind of numbness. He carried on as if nothing had really changed, and I guess it was his way of coping or trying to be the strong man he felt his mother and sister needed him to be, but eventually the grief came, and that was as hard to bear as his guilt had been, but at least the grief was something I could understand. But even with that understanding, I still struggle with how to help him cope with his loss.

Susan Belsinger

Evaluating Advice and Information in Grief

Dr. Kenneth J. Doka

Often, when we are in the midst of grief, we receive the advice of others. Sometimes it is solicited, other times it is simply offered. It may be from family, friends, or co-workers. We may even seek out the advice – eagerly reading an article or advice columnist in the paper, or surfing the Net for information.

Problems can arise when the advice seems troubling to us. Or we may be torn by conflicting suggestions – one person may advise tossing out all reminders and cleaning the closets while another recommends that we go slowly, making decisions after some thought and time.

How do we sift through all those different opinions? How do we make sense of the conflicting advice?

Remember Grief Is an Individual Experience

In the past decades, our understandings of grief have changed considerably. We no longer look at grief as a predictable set of stages. Rather we view grief as a highly individual process influenced by many factors such as our relationships with the person who died, the ways that we cope, the nature of the death, as well as a range of social, spiritual, psychological, cultural, and other factors. Some of us may respond to a death with deep and heartfelt emotion, while others may respond by focusing on work or other activities. We should be suspicious of any advice that tells us how we should feel and how we should grieve.

One Size Does Not Fit All

Since grief is a highly individual process, it follows that we may find support and solace in our own different ways. Support groups are a wonderful example. Support groups can be highly useful – validating grief, offering support and respite, suggesting options as we cope with loss, allowing people to help others even in the midst of grief, and extending hope in a difficult time. Yet, support groups are not necessarily for everyone. Some may have adequate support among their circle of friends. Others may find effective, perhaps more private ways, to cope while still others may be too needy for the sharing environment of mutual support. In my support group, I emphasize that we can tell what helped us rather than what would help another. We need to be cautious whenever someone is insistent that this is what we must do!

There Is No Timetable to Grief


Grief is like a roller coaster – full of ups and downs, highs and lows. Like a roller coaster, for many of us, the early part of the journey may not be the most difficult. Here the shock of the loss and the support of friends cushion us. Generally, depending on the nature of loss, most of us resume prior roles. If we are not functioning in our major roles – work, school, or home – or if we are resorting to drugs or alcohol to cope, it may be time to seek additional help. In addition, if over a period of time, maybe even a year or two, we experience the lows as often and intensely as ever, we may also want assistance in assessing what seems to be complicating our grief.

Say Goodbye to Closure

We never get over a loss. We learn to live with it. For most of us, pain lessens over time and we function at least as we did prior to the loss. Yet, even years later, we may, at special occasions, deeply miss the person who died. For example, when my first grandchild was born, I missed sharing it with my parents – even though they had died a decade ago. Distrust any counsel that suggests or promises that elusive “closure.”

We Can Trust Ourselves

Perhaps our inner voice is our best source of advice. What helped us in the past? This is often good counsel for the present. Moreover, as we hear the recommendations of others – in print or elsewhere – we can ask the question, it may have worked for others, but does it sound right for me? We are likely to know that answer.

Dr. Kenneth J. Doka

New MIT Study on Elder Care Makes Recommendations to Improve Support to Caregivers

Family caregivers provide a significant portion of the care given to the elderly, according to a new study by MIT's Workplace Center. The report offers a summary of ten recommendations to expand support for caregivers in the state of Massasschusetts. The researchers point out that the plan is only a starting point of a conversation, and in order for improvement to take place there is " . . .a need for a cultural shift, a change in attitudes and social values."

Building upon a study started in 2003 that determined family caregivers exist as a "shadow workforce," the MIT Workplace Center convened a public forum in January 2007, "Who Is Caring for the Caregivers?" A panel of five geriatric health care and elder care professionals and over 160 attendees, were asked several questions about the challenges of family caregiving and how to improve supports for caregivers.

Read the complete report here (PDF).

HFA Interviews Margaret Clausen, California Hospice and Palliative Care Association

Hospices have always been on the forefront of offering community support during times of public tragedy and loss. But the recent wildfires in Southern California served as a difficult reminder that, as hospice staff scramble to help patients and families, their own homes and lives may be directly impacted by the tragedy as well.

HFA's Lisa McGahey Veglahn recently spoke with Margaret Clausen, Executive Director, California Hospice and Palliative Care Assn (CHAPCA), and President and CEO, California Hospice Foundation, about how hospices in California have coped during these difficult weeks. Ms. Clausen also talked about other issues facing members of CHAPCA, the partnerships they are forming to address these challenges, and the opportunities that lie ahead. Read the full interview by clicking the "read more" link below.
Q. How were your hospice programs and the families they serve affected during the wildfires in October?

A. While many programs in the affected areas had to deal with evacuating patients and their families, we are thankful that the loss of property and life has not been as severe as it might have been. Most of those people being cared for by hospice were able to be moved to skilled nursing facilities or to family homes in other parts of the state. Some patients had to be moved more than once, which of course added additional stresses to those families.

And while hospice staff were working to help these families, many of them were facing evacuation and potential loss of property at the same time. At one hospice program, more than one-half of the staff had to be evacuated, and another program was unable to operate out of their office for a number of days. For the most part, all of these families have been able to return to their homes, but are facing severe damages from water and smoke, as well as unanticipated expenses related to the evacuation.

Q. How has CHPCA responded to help these affected members?

A. The California Hospice Foundation (CHF) has created a California Hospice Families Relief Fund, a restricted fund created to ease the financial burden of hospice patients and families whose homes were in the path of the fires. [Note: Hospice Foundation of America has donated $5000 to the California Hospice Families Relief Fund to help hospice families with extraordinary expenses incurred as a result 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.

We have already processed a number of requests. One hospice staff member had to be away from home for 3 days, and has a daughter with special health needs. In addition to staying in a hotel, they had to replace a great number of medications and other needs for their daughter. When they returned home, they were still without electricity for a number of days, and also had to contend with very poor air quality. Another staff member found, upon returning to her neighborhood, that while her home was standing, seven homes on her block had burned to the ground. Many of these expenses are not covered by FEMA or private insurance, and the CHF is pleased to be able to offer this support to our members and the families they serve.

Q. How did California hospices respond during the crisis?

A. I was pleased and proud to see how many hospices shifted into “disaster-planning mode.” After the Cedar Ridge fire three years ago hospices in California recognized the importance of developing disaster response plans. CHAPCA has offered conference programs on disaster planning to assist hospices in this process. And luckily for the patients and families, all of the programs that I spoke to during the fire had their own set of plans, which they were able to implement quickly and successfully.

I would strongly encourage all hospice programs to develop a disaster response plan, if they have not already done so. No matter where you live, an event could occur that would require immediate action, and both your staff and the families you serve will benefit greatly.

Q. In your 14 years with CHAPCA, what are some of the changes that you have seen in the field of hospice care?

A. One of the most notable changes has been in the rapid growth of hospice providers. While I think this growth presents both challenges and opportunities, one very positive impact has been an increased awareness of hospice among the general public. People have more information about quality end-of-life care options, and hospice usage has been rising in California. I see the knowledge base growing among health care professionals as well; there is a larger body of knowledge about what hospice is and the quality care that hospice can provide.

Q. What has been your experience with the advent of palliative care?

A. CHAPCA added “palliative care” to our name in 1999, but we had honestly not been very active in providing information for our palliative care members. Thanks to the leadership of a dedicated board member. Dr. James Hallenbeck, we have really begun to explore what our palliative care members need from a membership organization, and how to develop links between hospice and palliative care. Dr. Hallenbeck has formed a group of palliative care providers who meet regularly to develop educational programs and to talk about their special needs. Many palliative care staff tend to feel isolated, working in small programs within hospitals, and we have been able to provide critical networking opportunities.

At the same time, it is important to note that the goal is not to have palliative care emerge and establish itself as a model that is separate and distinct from hospice; the shared goal for all of our members is to provide quality end-of-life care to the families in California and Nevada whom we serve.

Q. What other links have developed between your members?

A. Dr. Hallenbeck is a physician at the VA in Palo Alto, and has helped us to develop some very exciting partnerships between hospice programs and the VA. Working on these programs has been extremely interesting and educational. Many veterans have specific needs and issues because of their experience in the Armed Forces, and sometimes at the end of life those needs have not been recognized and therefore have not been met. We look forward to continuing this partnership and increasing the quality of care that we can offer to all veterans.

Q. In your role as Executive Director of CHAPCA, you track legislation and provide advocacy and public policy support for your members. What are some of the issues that your members are facing in the next year?

A. Like many states, California is facing a severe nursing shortage. The state legislature has tried to address the issue several times, but so far there has been no substantive change. One possible solution that we are exploring is the use of “med-techs”, which some other states have tried with success. But not everyone is convinced that this is the right direction.

And as is most everyone in the country, we are looking at major issues surrounding health care reform. It’s a very big and complex issue in California, of course; we have a very large population of uninsured people. CHAPCA has participated in conference calls with the Governor to address the concerns; one of the major stumbling blocks is economic, in terms of who will actually pay for the coverage. I think this issue will continue to be an important topic both in our state and nationally.

Q. Are there specific legislative issues that CHAPCA is involved with right now?

A. Currently we have a bill in the California legislature that would allow hospices to own a freestanding hospice inpatient facility under their hospice license or to operate a hospice inpatient unit within another facility under their hospice license. As baby boomers continue to age and that demographic shifts, there simply will not be enough skilled nursing facilities or family caregivers able to provide quality end-of-life care. This bill would allow hospices to either build freestanding inpatient hospices that would be licensed as such, or to contract with a hospital or other facility to provide licensed hospice care. I believe this bill will be successful.
CHAPCA is also working with a coalition of health care providers to develop legislation that would create a medical set of orders to be used at the end of life, based on the POLST forms used so successfully in Oregon. [for more information, go to POLST.org]

Adding these forms would be a great service to patients and families, to help them be clear about what interventions they do and do not want at the end of life, no matter where they are.

CHAPCA is also part of a coalition that successfully passed legislation in 2006 that directed the Department of Health Services to develop and submit a waiver to the Centers for Medicare and Medicaid Services (CMS) to allow hospices to provide pediatric palliative care services to a pilot population of Medi-Cal eligible children. The first draft of the waiver has now been submitted to CMS and we are anticipating their response within the next month. A final draft will be submitted by the end of this year and we hope that we will actually be able to begin providing services in 2008. This is an exciting project because it will allow a population of pediatric patients who currently don’t access hospice services very often to receive concurrent curative and palliative care services. If it proves to be successful in terms of budget neutrality (which is required by a CMS waiver), we would look towards expanding the program in the future to all eligible children in California.

---

Margaret Clausen has served as President/CEO of the California Hospice Foundation (CHF) and Executive Director of the California Hospice & Palliative Care Association since 1995. Under her leadership, the two organizations have implemented long-term strategic plans to promote access and availability of quality hospice and palliative care for those suffering with life-threatening illnesses. She has worked with state and federal legislative and regulatory bodies and with many local and statewide coalitions to expand access to care for underserved populations and to identify and eliminate barriers to access.Margaret has served on the Board of Directors of the National Hospice & Palliative Care Organization; on the Board of Directors for Community Health Charities; on the Advisory Board for the California Coalition of Compassionate Care; on the Steering Committee of the Northern California Pain Initiative; and on the Public Policy Committee for the Children’s Hospice & Palliative Care Coalition.

A Patient Recounts His Experience With Hospice Care

It is rare to read a first-person patient account of hospice care. However, sometimes a terminally ill patient is able to offer us a window into their hospice experience. Robert Friedman, a retired University of Oregon professor and actor, wrote an eloquent account of his hospice care that was published posthumously on November 11 in The Register-Guard (Eugene, Oregon.)

New Study Addresses How Hospice Care Impacts Medicare Expenditures

A new study conducted by Duke University's Sanford Institute of Public Policy, shows that hospice care provides savings to the Medicare program. The average savings were $2,309 per person for patients who used hospice care versus non-hospice users. Other recent studies have offered competing conclusions. Some have indicated no cost differences, while others have indicated higher costs. When referencing this previous research the new study's authors state, ". . .uncertainty remains about the ability of hospice to reduce medical expenditures near death, even among recent methodologically sophisticated papers. . ."

Published in the October 2007 issue of the journal Social Science & Medicine,the study titled, “What length of hospice use maximizes reduction in medical expenditures near death in the US Medicare Program,” attempts to resolve this discrepancy by addressing the biggest obstacle to making a precise evaluation, namely ". . .the period of time over which costs of hospice users and controls are compared." Other research has focused on the last year of life rather than the actual period the hospice benefit is used.

Unlike this previous research, the new study examined costs from the day of hospice inclusion until death, and compared those costs on a day-to-day basis. The study included Medicare beneficiaries who died from 1993 to 2003. The authors ". . .identified hospice users and then created a control group of persons who did not use hospice, but who were otherwise similar."

In 1983, the hospice benefit was added to the Medicare program and use of hospice by Medicare patients has continued to rise. Citing other researchers who have demonstrated that hospice improves the quality of life for patients and family members, the authors conclude that ". . . the Medicare program appears to have a rare situation whereby something that improves quality of life also appears to reduce costs."

Association for Death Education and Counseling Addresses Negative Perceptions About Grief Counseling

On October 9, ABC television aired an episode of the Boston Legal series titled "The Chicken and the Leg." During this program, two lawyers took on the case of a woman who alleged that a psychologist's therapy sessions caused her husband's suicide. The term "grief therapy" was used, and it was implied during meeting between the respective attorneys that participating in therapy directly caused the husband's death. More specifically, it was stated that research suggests that four out of 10 individuals who seek grief therapy are harmed by the experience.
The Association for Death Education and Counseling (http://www.adec.org/) recently wrote to ABC Television and the producers of Boston Legal, expressing concern over the misperceptions about grief and the usefulness of grief therapy promulgated by this episode.

States Looking Into Developing New End-Of-Life Directives

Recent studies have shown that the use of the POLST form ("Physician Order for Life Sustaining Treatment") in Oregon has had dramatic results in end-of-life interventions. The POLST form differs from a health care proxy in that it spells out clear medical directions. Fifteen other states use similar types of forms, and other states, including Massachusetts and California, are looking into how to bring these types of forms into their health care systems.

How Life's Experience Shaped a Hospice Career

Vince Chiles, MSW

In the summer of our nation’s Bicentennial my aunt Joan came to live out her last days at my childhood home. I was 14 that summer, and in the midst of the confusing time of adolescence, my mother’s youngest sister was dying of breast cancer. Aunt Joan needed a caregiver, and our home was the most logical place for her to come live her final days. In 1976 there was no hospice in our town and there were only a few hospices in the United States. My mother did not have a nurse to visit and instruct her on how to administer pain medication or what to do in the event of my aunt’s death. There were no counselors or social workers to visit Joan’s family to provide emotional support and explain what was happening before our bewildered eyes.

My memory of my aunt prior to that time was one of a vibrant, joyful, and generous soul, who loved her nephews and nieces deeply. When she came to live out her last days, she was beaten by the rigors of cancer and radiation therapy. In her despair and discomfort she was bitter and disillusioned by the grave reality of what remained of her life.

My aunt Joan was in the midst of her life; I am as old now as she was when she passed and can’t help but think how her experience would have been different if she, her family, or even I would have had the services of a hospice.

As a hospice supervisor I can’t help but think how those last days for my aunt Joan have influenced my work in hospice. Hospice provides comfort for those at the end of life and does that with compassionate visits and nursing education regarding symptom management and medication administration. Nurses, social workers, chaplains, volunteers, and home health aides all visit at the bedside and are all comfortable talking about life and death and anything else the patient or family needs to talk about or say.

It seems to me now in retrospect that my aunt Joan was the first hospice patient I ever met. I did not think at 14 that anyone should die like she did, and felt betrayed when I saw her in her casket as if she hadn’t even been ill. I strive every day to assure that patients like my aunt Joan receive the very best care so they can live out their last days free of pain, and as full of quality and dignity as possible. Hospice assures that we each can live our lives to the very end with a sense of completion and peace. I am so blessed that I can help prevent the confusion I felt at 14 for other youngsters and families everyday in my own work in hospice.

Vince Chiles, MSW

Maine Attorney General Discusses End-of-Life Care

Steve Rowe, Maine's Attorney General, sat on a panel for a town hall meeting on end-of-life care held on October 25, 2007 at Miles Memorial Hospital in Maine. The panel included hospice administrators and a bereavement counselor, as well as physicians. In 2004, a conference was held for healthcare professionals, but this meeting was formed to learn how different communities in Maine deal with hospice and end-of-life care. The information gathered at October's meeting, along with a future meeting to be held in Portland, will be used in considering legislative initiatives for the state.

Celebrate Hospice and Family Caregivers This Month

November is National Hospice Month, a month to recognize the invaluable work that hospices do each day, to educate consumers about the benefits of hospice, and to honor those who cope with caregiving and end-of-life issues in their own lives.

HFA has some excellent resources that shatter myths about hospice care and can help promote the concept of hospice.

National Family Caregivers Month (NFC Month) is designated as a time every year to thank, support, educate and celebrate more than 50 million family caregivers across the country currently providing an estimated $306 billion in "free" caregiving services. This year NFC Month will focus on family caregivers speaking up for their rights. The National Family Caregivers Association has a number of materials online.

What is Hospice?

John Chuchman, author and Pastoral Bereavement Educator, offers this poetic post about hospice. His blog is ". . . dedicated to sharing our experiences of loss in life, grief and healing growth."

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.

New Publication Focuses on Issues of Ethics and Pain Managment

The issue of pain management at the end of life is an ongoing concern for professionals and families. While hospice professionals offer special skills in this field, many health care professionals have not received proper training or have a comprehensive understanding of the critical importance of pain management in end-of-life care.

The Center for Practical Bioethics' most recent publication (PDF) looks at Bioethics and Pain Management, and includes articles from Dr. Richard Payne of the Institute on Care at the End of Life at Duke University and Betty Ferrell, City of Hope Medical Center.

New Lawsuits Challenge "Family Resposibility Discrimination"

USA Today reports on an increase in lawsuits filed by employees claiming discrimination on the job due to their family caregiving obligations. The federal Equal Employment Opportunity Commission (EEOC) issued a guidance for employers, giving them examples of how bias can occur. The EEOC website also includes a fact sheet for employers which ". . .illustrates circumstances under which discrimination against a working parent or other caregiver constitutes unlawful disparate treatment under the federal EEO statutes."