Hospice and Caregiving Blog

Living a Good Life

2008-05-05T12:25:00.005-04:00

Vince Chiles

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

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

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

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

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

Vince Chiles, MSW

A Gentle Death: Five Months with Hospice

2008-05-05T11:14:00.002-04:00

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

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

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

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

Changes to Medicare Hospice Wage Index Proposed

2008-05-02T11:30:00.003-04:00

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.

Massachusetts' Efforts to Improve Health Care Include Focus on End-of-Life

2008-04-30T11:02:00.003-04:00

The Commonwealth of Massachusetts Health Care Quality and Cost Council recently released its annual report. Along with goals to improve treatment of chronic illness, decrease hospital infection rates, improve quality reporting and reduce racial and ethnic disparities in health care, the Council also set a FY 2008 focus on end-of-life care.

Develop processes and measures to improve adherence to patients’ wishes in providing care at the end of life. Ensure that health care providers ask about and follow patients’ wishes with respect to invasive treatments, do not resuscitate orders, hospice and palliative care, and other treatments at the end of life.

The Council set out nine strategies to achieve these goals, including: a statewide public health education campaign; development of something similar to POLST (Physician Order for Life Sustaining Treatment) orders; require hospitals, extended care facilities, and home health organization to offer formal hospice and palliative care programs; measures insure physician and nurse competency in end-of-life care. You can also read a summary of the report by JudyAnn Bigby, M.D., Health and Human Services Secretary and chair of the Council.

Medical Technologies Create New Ethical Quandaries at the End-of-Life

2008-04-30T11:00:00.001-04:00

The Washington Post wrote an article last week about the new ethical dilemmas created by advances in medical technologies. Specifically, heart pumps known as left ventricular assist devices (LVADs), which were originally developed as a bridge technology to organ transplant, but now are also used for years in patients. The article discusses the different ways physicians and ethicists view the device, from being similar to feeding tubes and the like which a patient has the right to remove, to being more comparable to an organ itself.

Celebrating Death, Hospice Visits, and Alzheimer's

2008-04-30T10:53:00.002-04:00

This post is a round-up of a few items of interest that address caregiving, death, and hospice from a personal perspective.

TIME Magazine had an essay from Nancy Gibbs about celebrating the day of her father's death. The metaphor her husband used to explain his death to their daughter is wonderful.
How is it that the one event we know with absolute certainty will occur is still one we improvise? Do we lower our voices, dress in black, save a lock of hair as the Victorians did and wove into jewelry? Do you let young children see a corpse--the very word suddenly cold and empty because his flesh and blood no longer matter, his meaning filling the space once his presence is gone? "Is that Grandpa?" our 4-year-old wondered. "No, honey," my husband told her. "He's not here anymore. That's just his body." She worked at this, how the arms that held her and the lap she sat in were no longer him. "You know how when we go to Florida, we leave our winter coats at home because we won't need them there? Well, he just left this behind because he doesn't need it anymore." And this appeared to make perfect sense to her, and she went to play, full of love and certainty, and we all took a walk in the watery light of late afternoon.
A medical student at the University of Glasgow blogs about her visit to a hospice as part of her medical training.
I spent Wednesday morning at a hospice on the south side of the Clyde.

It may not be how most people would react, but afterwards, standing outside, I turned to my VS tutor and said, “This is going to sound weird, but it seemed like a really happy place.”
The News-Times (Connecticut) carried a story about the strong love that remains in a 68-year marriage of a couple where the husband has Alzheimer's disease.

False Memories May Complicate Advance Directives

2008-04-28T19:20:00.002-04:00

Reported in the ScienceDaily, a study appearing in the journal Health Psychology addressed the use of advance directives and living wills. Disturbingly, researchers say that many people don't remember what their wishes were at the time they made their advance directive, and hold false memories of their end-of-life preferences.

“Living wills are a noble idea and can often be very helpful in decisions that must be made near the end of life. But the notion that you can just fill out a document and all your troubles will be solved, a notion that is frequently reinforced in the popular media, is seriously misguided,” said Peter Ditto, professor of psychology and social behavior at UCI> [University of California - Irvine].

The study appears to indicate discussions about end-of-life decisions should be ongoing.

Saying Thank You to All the Volunteers

2008-04-25T09:18:00.003-04:00

Next week is National Volunteers Week and HFA wanted to say thank for the dedication hospice volunteers show each and every day. Without its volunteers, many hospices could not provide the high level of care they do for terminally ill patients and their families. Hospice volunteers perform a wide variety of vital services, including support for patient, respite care, bereavement support and more. To learn more about what hospice volunteers are doing in your community, or about how to become a hospice volunteer, please visit our website.

Recently, one of our readers, Laura Edge, was so moved by her experience of training to become a hospice volunteer, she sent us an essay about how it has changed her perceptions of hospice care. We thank Laura for sharing her thoughts with us, and we thank all the volunteers who contribute their time, talents, and energy to assist the dying and their families.

I am a new volunteer with a hospice in West Texas. I wanted to express how much I have been affected by my training and how "off" I was in many of my assumptions of what hospice care meant. Being in the funeral and cemetery industry for almost 14 years, I have only ever heard positive things about hospice. I did not know, however, how much more hospice provides. I have always been taught about grief from the survivors’ point of view. I have come to the realization of what pre-arrangements and planning ahead truly means. It took a class on “Finishing Well” to help me see how to live well, to live with purpose.

When I began trying to decide if I wanted to work with the Children’s Grief Center or with hospice, I took a weekend course for the Children’s Grief Center, and then “Ending Well,” an eight-week class required of hospice volunteers prior to working with a patient and family. I wanted to take the classes because I thought it would help me as a funeral professional. In truth, since I had all this “experience” I was simply going to sit through the “required training” in order to sit with families occasionally, and help with teens who were having difficulty adjusting to a loss. I did not realize any of this was going to affect me on such a personal level. I am only in the third week of this training, and have yet to volunteer, but, already, I have been touched in ways I could never have predicted.

Most of the people who are volunteering with hospice are there because hospice had been there for them at a time of need, or because they are caregivers of persons who were currently in hospice. The depth and the truth these families are sharing was, and is, beyond words. I cannot express how exposed and vulnerable these caregivers are as they weekly search for answers. I often felt as if I was glimpsing at parts of their souls as I heard their stories.

As I sat in the class, I began to question quite a bit of what I had been taught, both on the job and in the classroom. One woman explained that her husband had been dead for over 25 years, and that most people have come to avoid the topic of him. It was hurtful to her, 25 years later, still a fresh wound. But she expressed that when someone did speak about him, it gave her joy because he was being remembered. She said this was more of a tribute to him than anything else. There are many, many more opportunities to memorialize someone.

Since I have been in the funeral and cemetery industry for so long, my family tends to think that I am whom they need to talk to about their final wishes. Not one family event, be it a holiday or a birthday or a funeral, goes by without someone pulling me aside to tell me what scriptures they want read at their funeral, the color and kind of flowers they want on their casket, or that they have changed their song choice (AGAIN), or “PLEASE, don’t let them put orange lipstick on me.” I have always listened and planned on making sure their wishes are followed through, but I am beginning to realize the extent, the importance of helping them finish well. Whether simply spoken in confidence or placed in writing or arranged beforehand, they provide true moments of sharing and that will undoubtedly be important to the ones they left behind.

Laura Edge

Variations in Cost of End-of-Life Care Get a Closer Look

2008-04-23T16:58:00.003-04:00

Two recent articles have examined the data from Dartmouth's annual Atlas of Health Care study at the local level in Massachusetts and Colorado. The first, from The Harvard Crimson, reports on some criticism of the study from Thomas H. Lee, Jr. the network president at Partners HealthCare, who owns both Mass. General Hospital and Brigham and Women’s Hospital. Lee raised the issue that data was not adjusted for differences in medical costs by state. For instance, medical professionals' wages are 20 percent higher in Massachusetts than in Minnesota (which had lower end-of-life care costs.)

Reporter June Q. Wu also interviews James B. Conway, who sits on the Mass. Health Care Quality and Cost Council. A report by the council noted that although over 70 percent of Americans say that they would prefer to die at home, only one fifth of deaths in Massachusetts were at homes in 1997. Despite legislation to increase end-of-life options, the number had only risen to 22 percent by 2005. Conway, who is a representative from the Institute for Healthcare Improvement, a non-profit organization based in Cambridge, addressed the difficulty in changing those statistics. “We live in a world of islands. Doctors do their piece, nurses do their piece, hospitals do their piece,” Conway said. “We haven’t yet put together a system to support the delivery of end of life care.” He also stated, “This is not something that will be solely fixed on one hospital, one clinic, one doctor’s office at a time,” Conway said. “It’s going to require coordination from everybody, from the people at health care companies to the ambulance driver. The community will be coming together in the name of the patient.”

As we noted in our original coverage of the Dartmouth study, hospice care was the only type of non-acute care that did not follow the variation in increased costs. A second article focusing on costs of end-of-life care in Grand Junction, Colorado appeared in today's The Denver Post. Grand Junction had one of the lower costs per patients recorded by the Dartmouth Atlas. Several factors are likely coming together to help lower these costs that involve how physicians are reimbursed and reviewed. Also helping, "Grand Junction has one well-respected, nonprofit hospice that works closely with the local medical community to provide care for those with severe chronic illnesses and to give options to those who otherwise might have to be treated and die in hospitals. Hospice caregivers attend more than half of all deaths in Mesa County."

We will continue to share new articles that refer to the Dartmouth Atlas on a local level, and we are encouraged to see some coverage now being given to the role that hospice can play in providing excellent end-of-life care.

UPDATE 4/28/08: The Miami Herald has joined in with an analysis of the Dartmouth Atlas for southern Florida. The article reports on testimony given by Peter Orszag, the director of the Congressional Budget Office, during a Senate hearing. The Herald reports on costs at six hospitals covered by the Atlas. The article noted that one of the lower cost hospitals also had a higher rate of referrals to hospice.

The report compares three Miami-Dade hospitals with high HCI scores -- Westchester, Mount Sinai and Hialeah -- with three that have much lower scores -- South Miami, Baptist and Jackson Memorial. Of these, Baptist has the lowest percentage of intensive care unit care during a final illness (25 percent) and the highest percentage admitted to hospice (46 percent), where treatment concentrates on comfort and alleviating pain.

Use of Antibiotics at the End-of-Life in Dementia Patients

2008-04-23T16:55:00.003-04:00

The Chetek Alert (Wisconsin) published a letter about the difficulty navigating decisions to medicate near the end-of-life. HFA’s medical consultant William M. Lamers, Jr., M.D. recently weighed in on a study about antibiotic use in dementia patients. It is one thing for medical professionals to debate the ethics in journal articles, it is another to read a very personal account of the decision-making process a family must go through in regard to giving medications. The letter from John M. Hardin, involving the care of his wife who had dementia, is such an account. We are sharing it here in the interest of opening up the dialogue about the use of medications at the end-of-life.

Although patients with terminal illnesses (or their families) are more routinely asked if they have a DNR (Do Not Resuscitate) order, questions involving other types of medications are not usually part of the process. Hardin argues:

I would like to propose a new approach to nursing home admittances, especially when there are no living wills or power of attorney for health care. In addition to asking if the loved one is DNR, they should also be asked if they are DNM (do not medicate with new drugs) or PCO (Palliative Care Only). Then, and only then, will we return to the normal course of things that existed before 1943. Then and only then will we finally address the issues surrounding dementia with a more realistic, kinder approach.

UPDATE 4/28/08: A director of a nursing home responded to the letter with the following:

I read with interest the article on end-of-life decisions by John Hardin and I am in total agreement that these decisions are very difficult for all involved, but are necessary.

Knapp Haven's admission procedures do include reviewing with the resident or the responsible party measures that they want put in place so everyone respects their decisions and quality of life wishes. This is not a new approach, as it has been our policy for more than 17 years. The options presented include not only do-not-resuscitate measures, but also palliative care measures only, including the choice of medication therapy.

Mary Huset
Director of Nursing
Knapp Haven Nursing Home

No More Stages of Grief

2008-04-23T16:51:00.001-04:00

This Psychology Today blog from J. Worth Kilcrease, LPC, FT, discussed the failings of models of mourning that are based of stages of grief. He describes several reasons why these models are not helpful to understanding how people mourn. Even worse, these types of models can create expectations of the ‘right’ way to mourn. HFA has many articles about the grief process, including debunking myths about grief.

End-of-Life Care Survey of Upstate New Yorkers

2008-04-21T18:46:00.003-04:00

Excellus BlueCross BlueShield recently released a survey of 2,000 adults living in upstate New York to assess their attitudes and actions regarding the use of health care proxies and living wills. Key findings:

Considerable disparity exists between consumer attitudes and behavior as they relate to advance directives. Nearly 9 of 10 adults surveyed (88%) say it is very/fairly important that they have someone who could make medical decisions on their behalf if they had an irreversible terminal condition and were no longer able to make medical decisions on their own. Yet, only 42% indicated they have actually designated a Health Care Proxy who would assume this responsibility.

Even fewer people reported completing a Living Will (26%), although 80% said it is very/fairly important for them to have such a document.

Perceived importance of the two advance directives was high even among those who had not completed a Health Care Proxy form or a Living Will. Among those who had not completed a Health Care Proxy form, 81% said it would be very/fairly important for them to have a Health Care Proxy. Of those who had not completed a Living Will, three-quarters (74%) felt that it was very/fairly important for them to have one.

Overall, about 4 of 5 residents surveyed felt that every adult should have a Health Care Proxy (81%) and a Living Will. Only a small percentage thought that Health Care Proxies and Living Wills were only for old or sick people.

Read the complete Executive Summary on their website.

Aging in Place in York County Pennsylvania

2008-04-17T09:19:00.002-04:00

HFA wants offer our readers a glimpse into the lives of the myriad of professionals who assist hospice patients, grieving families, the elderly, and their caregivers. People across many disciplines work to help those who are aging, grieving, and dying. We asked Heidi Kimmel, who works for the York County Area Agency on Aging, to share information about the organization and her job responsibilities. Last week, we also featured a profile on Pamela Gabbay, Program Director of the Mourning Star Center for grieving children. Look for more of these profiles in the months ahead.

Heidi Kimmel

The York County Area Agency on Aging (YCAAA) has been meeting the needs of older adults in York County, PA since 1975. York County’s older population is the second fastest growing county in Pennsylvania, serving over 86,800 people age 60 and over. My title at the YCAAA is Aging Care Manager II. I received my Bachelor’s in Social Work from Millersville University in 1999. I’ve worked with the aging population in Maryland and Pennsylvania since 2000, mostly in skilled nursing facilities as a social worker helping with admissions or discharges. I am currently working towards my Masters in Social Work. I enjoy working with the aging population because most of my consumers and their families are very pleasant and cooperative. They are usually very helpful in gathering information that is needed to complete assessments for care they need and are grateful for the care they receive. Many of our consumers are empowered enough to direct their own care through our agency, although some of our consumers’ families have stepped up to the plate to take charge of their loved ones’ care.

YCAAA arranges for eligible clients to receive family caregiver support, adult day care, public transportation, in-home personal care and medical supplies. Using a sliding scale payment system depending on income, consumers may have to pay for a minimal or no amount of these services. Cost sharing allows people within a certain poverty level to receive services they would not be able to afford otherwise. YCAAA offers other no-cost services, such as home delivered meals, ombudsman and legal services, a friendly visitor program, senior community center, and a waiver program which helps clients stay at home longer. Other programs provide counseling on Medicare and related health insurance issues, and offer pharmaceutical assistance.

The YCAAA employs over 60 staff to meet the needs of York County’s older adults. Most state AAA’s are county level government agencies, such as York County, but some county AAA’s in the state are privately owned and operated or are non-profit agencies. YCAAA has three different departments with their own unique focus. Care Management is the largest department comprised of staff who take initial referrals, protective service staff who investigate elder abuse/neglect cases, community health nurse, care managers and care manager supervisors. There is also an Administrative Services department and Program Development department.

The York County area is home to a lot of elderly citizens in their 80s and 90s and so their children may also be considered elderly, as they may be in their 60s and 70s. Sometimes it’s challenging for those children to support their parents as they are also battling chronic and acute medical conditions of their own. Often the grandchildren have to step in at that point. It’s rewarding to see families come together to be a competent support system for their loved ones, whether it be finding a way to keep their loved one at home safely or making financial and medical decisions for them when they are no longer able.

Care Managers who come to our agency right out of college say they enjoy working here because they like the agency’s focus on the elderly population. Some feel good about being able to educate and advocate for older adults during their times of bio-psycho-social health stresses. Some may feel they are detectives as it is challenging to find out what the consumer really needs from what little data they or their caregivers are able or willing to tell the care manager. Other care managers get a good feeling out of the reciprocal relationship they have with their consumers as they tell their life stories filled with joys and hardships.

YCAAA has a high percentage of personnel who have been with the agency for 10-20+ years. They say they enjoy working with our agency because it’s flexible and family-friendly to the employee. They like being able to see the difference our agency makes in our elderly population. Unlike other county programs where consumers are court-mandated to participate, our staff feel we have a different atmosphere because the consumers seek us out for our services that can provide noticeable differences in their lifestyle.

Upon contacting your local Agency on Aging, you may notice they provide similar and different services depending in which county or state you reside. But you will be surprised by the types of services the Federal, State and Local governments have arranged in support of your elderly population. If they’re unable to provide what you’re looking for, they may have names and numbers of other government, private or non-profit agencies that fit you or your elderly loved ones needs. To find your local Agency on Aging, use the federal government’s Eldercare Locator website, http://www.eldercare.gov

Heidi Kimmel

Those Killed at VA Tech Remembered, One Year Later

2008-04-15T15:23:00.004-04:00

It has been one year since 33 people, including the gunman responsible for the shootings, were killed at Virginia Tech. The families and friends of the deceased are coping with their grief and developing memorials of their loved ones in myriad ways. Here is a selection of the media coverage of the anniversary of a public tragedy this week.

The New York Times' Ian Urbina writes about one family who lost their daughter, Austin Cloyd, in the shooting. Last year, they had asked that donations in her honor be sent to a program she had volunteered for in the past, rebuilding homes in Appalachia. Over time, Cloyd's father, who is also a professor at Virginia Tech, began bringing students along, and eventually urged the university to engage students in public service. Now, a new program called V.T. Engage asks students,faculty and staff to perform 10 hours of service, for a total of 300,000 hours, in honor of the victims. They have put in more than 200,000 hours so far this year.

USA Today features the father of a German instructor who died. The father, who is a writer-in-residence at LaGrange College in Georgia, has taken his son's collection of digital collages and developed them in to an exhibit on display at his school. The AP reported friends and family of Daniel O'Neil, an engineering graduate student, are releasing a CD of his original music.

The Washington Post hosted an online discussion with Jay Poole, director of Virginia Tech's Office of Recovery and Support, on how Virginia Tech students are handling the anniversary. The Post's Style section also featured a story of how a survivor, Derek O'Dell, is coping. They also reported on Virginia Gov. Timothy M. Kaine calling for a day of remembrance Wednesday. The AFP reports on how the university as a whole, is dealing with the tragedy and is moving forward.

UPDATED 4/16/08 11:00am
Two new stories appearing this morning, from the Washington Post a story about the anniversary including video and photos. USA Today also updated its coverage with more photos and video from memorial services.

Gaps in the Availability of Hospice Services, According to National Study

2008-04-14T14:29:00.001-04:00

A University of Michigan study released Friday points to gaps in the availability of hospice care across the United States, particularly in communities with lower average incomes and education levels, and more elderly people. Researchers believe the disparity is a result of how hospice care is covered by Medicare and private health insurance. In many cases, the reimbursement rates are lower than hospices actual costs of providing care. Therefore, hospices must look for charity donations and must also use volunteers. The researchers surmise that hospices are more likely to receive this type of financial and volunteer support in higher income areas.

Grants Being Awards for Community College Caregiver Training Programs

2008-04-14T11:37:00.000-04:00

The Caregiving Project for Older Americans, a project of International Longevity Center-USA and with funding from the Met-Life Foundation , will award up to twelve $25,000 grants to community colleges to establish new caregiver training programs or to build upon existing programs. They hope "to encourage the development of new and novel programs to train both family and professional in-home caregivers, promote skill development, advance the quality of care, and provide opportunities for career development." The deadline for submissions is May 15, 2008. Applications can be downloaded here, or view the press release.

Local Pennsylvania Paper Writes Caregiving Series

2008-04-14T11:35:00.001-04:00

This three-part series from the Bucks County Courier Times focuses on caring for someone with Alzheimer's disease and dementia, by sharing one family's experiences. In the first article, writer Jo Ciavaglia talks about how Marjorie Jackson first noticed her mother was developing dementia, and the changes it brought while still undiagnosed. Next, she describes the mounting tasks Jackson begins handling for her mother as her symptoms worsen. It also discusses care options in Pennsylvania. The final article, deals with Jackson's placing her mother into a nursing home and the emotional difficulties of the transition.

Remember Me - Photographs of a New Hampshire Family's Journey through Illness and Death

2008-04-11T09:29:00.001-04:00

The Concord Monitor and their former photographer Preston Gannaway, earned the Pulitzer Prize in journalism for her photo series which chronicled the death of Carolynne St. Pierre. The moving photographs, original articles, and multimedia presentation are online at the newspaper's website. The photographer and a reporter spent two years with St. Pierre and her family as they prepared for her death and grieved afterward.

The Commonwealth of Virginia Declares April the Month of the Grieving Child

2008-04-11T09:28:00.001-04:00

Read the proclamation on The Grieving Child website and view events being planned by the Central Virginia Bereavement Coalition, including HFA's national teleconference next week which focuses on children's grief. Find out where you can view the teleconference in your neighborhood.

Using Humor in Caring for the Terminally Ill

2008-04-11T09:27:00.001-04:00

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 . . ."

Bloggers Discuss Caregiving Challenges

2008-04-11T09:20:00.003-04:00

There are a couple of recent personal blog posts we wanted to share this week. First, this post discusses a difficult issue faced by aging parents caring for an adult disabled son. The blogger writes of his brother, who has Muscular Dystrophy and has been in a wheelchair for many years. A recent fall has made the poster question how long his parents can continue to provide care and how hard it will be to have that conversation.

Scott is a full grown man, and he doesn’t have the strength to help when he needs to be transfered from his wheelchair to the bed, or the tub, or his easy chair my dad set up to help his legs rest. And my dad turns 65 this year.

Dad has always been a big bear of a man, but he wont be able to lift Scott forever. . . Even though he needs professional semi-skilled care . . .we might could come up with some arrangement where my brother could be cared for in our homes.

But my parents are stubborn people, and it may sound funny coming from a 43 year old, but I don’t want to disobey them. I think that deep down, all of us, parents and children, know that a day is coming when the two able-bodied sons are going to have to sit down with the parents and say, “No disrespect, but you’re going to have to let it go and let us take over”. But for now, we have instead, this uneasy silence where we sons know what we have to say, but we don’t say it.

I think it’s going to take Scott telling them to let the brothers take over. Ironically, they’ll listen to him.

Thanks to the GenBetween blog for sharing. The second post, part of Virginia Cornue's series of posts on sandwich caregiving, discusses the guilt associated with making decisions about where and how your parents will receive care, and the challenges faced by those caring for young children along with aging parents.

Of all her 11 siblings, my mother was the only one who was in institutional care at the end of her life. This is something I still have not entirely reconciled. This in one of those it's not the right thing to do--not the right way to treat your elders values I hold. But it was the only practical thing to do. . .

. . .If I had been truely a Sandwich Generation participant...if I had had to care for her long distance, AND take care of an infant, go to grad school--commuting an hour or more each way, and teach parttime, do my share of the domestic chores, maintain some sort of marital and social life, I think, NO I know, I would have had not only a nervous breakdown but a physical one as well. . .

. . .More than a decade later, I still miss her daily. Her last days at The Oaks were as good as they could be. She, my model joyolgist, told me scatological nursing home jokes to lighten my heart. But I--I still don't feel right about how her last days ended. My Mom, however, would say differently to me. As is on her gravestone, she would say to me, "Do your best, honey."

Did I? Yes--given the circumstances. I guess that's all we can do in the long run.

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

2008-04-09T10:53:00.003-04:00

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.

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!

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

2008-04-09T10:04:00.004-04:00

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)

Knowing When Your Caregiving Is Too Much

2008-04-09T09:59:00.002-04:00

In this post from MSCaregiver.com, a husband ponders whether his caregiving is supportive of his wife's MS, or restrictive. He debates whether his goal should be to help his wife be independent, in the same way he helps his daughters to develop their independence. In the end, he gives this sage advice:

As a caregiver, if you wonder when or whether your caregiving might be “too” caregiving, there’s a simple way to find out. Ask the person for whom you care if you’re doing too much.

Supporting Children's Grief

2008-04-07T10:38:00.001-04:00

Hospice Foundation of America's 2008 Living with Grief Teleconference will focus on the experience of grieving children and adolescents and the ways that hospice professionals, teachers and school administrators, grief counselors, funeral directors, and parents can best support these populations as they cope with loss and grief. We asked one of our regular contributors, Vince Chiles, to discuss his experiences with children and grief.

Vince Chiles

Children often live in the midst of the dying. This fact seems counterintuitive when we think of people at the beginning of their lives, but many children will experience the death of a loved one. In fact one of the most magical things a hospice worker witnesses, is the connection between the terminally ill grandparent and the young child or adolescent. A few years ago, we had a patient whose five year old grandson tucked his grand dad in every night. This was very touching and a powerful reminder of the mystery of the circle of life.

I have seen this connection time and time again, of the young comforting the old in their time of need. The very old and young balance each other and remind us of how our own vulnerability supports the life process. In the Native American traditions there is a simple prayer ‘to all our relations.’ It is often said at the beginning and end of ceremonies to commemorate the actions of the group in relation to those who came before and those who are yet to come. Life is a circle that is connected with death and birth, again and again.

The grieving youngsters’ feelings are real and profound when they lose their ancient guides. The thought of not attending my Aunt Joan’s funeral when she had died thankfully never entered my parents’ minds. All eight of my siblings attended her burial recognizing the finality of life, and validating our grief. There are those families who do elect to exclude youngsters from memorials and funerals. Perhaps they think shielding the child from the presence of the dying and deceased protects them in some way, but I have found this to be a contrary perception that can create more problems. The classic story is that of the Buddha, a prince shielded by all suffering in life, due to an infancy prophecy that the prince would become a holy man. When the young prince had a glimmer of suffering he left the security of his palace to discover the secret of life –desire creates suffering. The king lost his beloved child, to the realities of the world. Children are their own beings who need respect and support through their own grief, not denial or protection.

If we choose not to shield the child from death, how can help guide them through their grief? We can support the grieving child in many ways. It is important to tell the child what is going on with their loved one, and what to expect. ‘Grandma is sick, and she’s not going to get better this time. That means she will eventually die, and we have help from hospice here. They can talk to you if you would like.’ Offering a child or grandchild the services of a hospice social worker can be a great thing for the child or adolescent to prepare for saying goodbye and adjust to the grieving process. When a child or grandchild says goodbye, the parent or grandparent suffers less. It may be a heart-wrenching encounter to witness, but the potential benefits outweigh the consequences of not bidding farewell. Providing grief support resources after some one has died in the form of educational groups, grief and loss camps, support groups, or one-on-one counseling can all help. It is important through that the child be open to these services and that they are able to opt-out or maintain some control if activity becomes to overwhelming.

Children and adolescents grieve differently than adults do. They may need to draw pictures when they are very young to make sense of what has happened, or have some alone time to figure it all out when they are older. I remember a Native American boy I had worked with on the White Mountain Apache Reservation, who was so angry that his father had died when he needed a positive role model in his life. We walked to the White River and started to throw rocks into the water. I challenged him to throw the rocks as far as could across the river, letting go of his anger, and allowing the water to wash away his pain and suffering as his angry rocks were swallowed up by the current.

Finding creative ways to help children and adolescents grieve can also help the adults around them process their loss. Children are grounded in their intuition and haven’t figured out how to rationalize and explain away life’s mysteries. They can draw a picture or express themselves with other creative outlets that inspire us to see their wisdom in spite of their youth. Hospice social workers, bereavement counselors, and volunteers are great resources to families with grieving children and they often provide support to families in need regardless of whether the family received hospice care.

Magic in many instances is an illusion, but the magic in hospice when a child grieves effectively is that they evolve into healthy adults. They learn to see the connections in the circle of life, and recognize the vulnerability we all share. Children who learn to grieve well recognize the interdependence of life, and can appreciate the relationships they have on a deeper level. Helping a child learn how to effectively grief a loss, is a little magic we all could benefit from.

Vince Chiles, MSW