Who Wants Hospice: Racial Disparities in Who Receives End-of-Life Care

According to a report by the California HealthCare Foundation, ethnic minorities enroll in hospice care at lower rates than whites. Only six percent of hospice patients were African-American in 2004. Four percent were Asian-American, 15 percent were Latino, and 74 percent were white.

Medicare admissions requirements are thought to be at least partially responsible. For Medicare funding, a hospice patient must forgo all curative treatment, including chemotherapy and dialysis. Ethnic minorities are thought to be more likely to pursue aggressive treatment until the death.

Also, African-Americans are more concerned than other groups about finding caregivers who will respect their culture. White families are more concerned about pain alleviation, while cost of care is the primary concern for Hispanics and Asians.

The report concludes by recommending that (1) Medicare regulations be reformed to allow aggressive treatment concurrent with hospice care; (2) Hospice employees be trained in cultural sensitivity; and, (3) emergency departments expand their bereavement services because ethnic minorities are more likely than whites to die in a hospital setting.

Readers who would like to learn more about being a culturally competent caregiver should mark their calendars for the of spring of 2009, when Hospice Foundation of America will host its 16th annual teleconference: Living With Grief: Challenges of Diversity.

Two Leaders in Pain Management and EOL Care Receive Awards

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

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

PBS Program Takes a Behind-the-Scenes Look at a Funeral Home

FRONTLINE's The Undertaking, to be broadcast October 30 on PBS, enters the world of Thomas Lynch, a writer, poet and undertaker whose family for three generations has cared for both the living and the dead in a small Michigan town. Check here for local listings.

The role of hospice is discussed in the series, including the pediatric hospice program at Angela Hospice Care Center in Livonia, MI.

Spiritual Care Coordinators Attend Hospice Patients

This October 28, 2007 in-depth article in The Journal News (NY) follows Mary Wasacz, one of two spirtual care coordinators for Hospice & Palliative Care of Westchester, New York. The hospice usually cares for between 80 and 100 patients, and more than half request spiritual care.

Fire Crisis in California: Hospices Activate Emergency Plans

October 25 -- The Los Angeles Times reports today that more than 500,000 people have been evacuated from their homes, over 1,600 homes have been destroyed, and more than 695 square miles have burned due to the rapidly spreading wildfires in Southern California. Hospices in the area, which serve the terminally ill mostly in patient homes, are activating their disaster preparedness plans in response to the crisis.

According to hospices in the affected area, staff shortages have been the primary challenge. Many hospice staffers have been forced to take a reprieve from caregiving because they must evacuate their own homes or provide care for family members. According to Suzi K. Johnson, Vice President of Sharp HospiceCare in La Mesa, her organization is operating with a 60 percent staff reduction.

To cope with the short-staffing, some Southern California hospices contacted by HFA have temporarily modified patient care plans by replacing nonessential home visits with phone calls. Johnson reports that patients are first prioritized according to need, and in-home visits are reserved for the most pressing patients.

Fortunately, hospices in Southern California say they were well-prepared for this catastrophe. All hospices HFA spoke with had a disaster preparedness plan in place well before the fires. In 2003, fires ravaged Southern California, albeit to a lesser degree than now, and many heath care organizations reacted by revising their disaster plans to reflect the threat of rapidly spreading fire.

Hospices are working to maintain contact with all their home patients, as many have been evacuated. Juan Renteria, of San Diego Hospice and Palliative Care, describes a process typical of many Southern California hospices. The first task is to locate all hospice patients. If patients have been evacuated, they must first be found. The second step is to coordinate care between relevant parties to ensure that patients continue to receive their medications and other vital care. Finally, hospices have been working to help find housing for patients who must be evacuated. Several hospices HFA spoke with are working in conjunction with nursing homes and assisted living facilities to transfer patients out of the danger zone.

“Our staff…has been called upon to evacuate patients to safety. Staff people are working to ensure patients safety, while they themselves are being evacuated. These acts of courage have come from many staff while they are working, not knowing if they will have a home to return to,” said Lorraine Hedtke, Bereavement Services Manager of VITAS Innovative Hospice Care, one of the nation’s largest providers of hospice care.

Some hospices are using the Internet to quickly disseminate information regarding their patients and disaster plans. A FAQ [pdf] regarding San Diego Hospice and Palliative Care’s disaster plan is available from its website. Sharp HospiceCare is placing regular updates on its website. VITAS’s Guide to Coping with Public Tragedies and Natural Disasters is available online.

While most hospices maintain their own disaster preparedness plans, their plans are not integrated into a comprehensive, state or countywide disaster plan. Hospices that are part of a larger, regional healthcare organization usually have a comprehensive plan for the entire company.

Most administrators HFA contacted are impressed with the response by local public officials, even though San Diego County lacks a pre-planned, direct line of communication with end-of-life caregivers. Alejandro de la Rosa, LightBridge Hospice, said that to his knowledge, his organization has not had direct, regular contact from San Diego County officials. He said that LightBridge Hospice has received most of its fire emergency updates from local media (including radio, television, and the website for the San Diego Rural Fire Protection District).

Some nursing home residents have been evacuated to Qualcomm Stadium, temporary home of around 10,000 residents.

Gina Andres from Hospice Care of the West, Foothill Ranch, reports that some patients are suffering from respiratory ailments due to the high volume of smoke in the air. Part of Hospice Care’s disaster plan is to ensure that its patients have enough back-up oxygen tanks to see them through the fire.

On Grief: From One Child to Another

Milly Bell was seven years old when her father died from a brain tumor. With the encouragement of her mother, she used drawing and painting to help ease her grief.

When Milly learned that she isn't the only kid to have lost a parent, she wanted to share what she had learned. The resulting book, My Daddy is Dying, was assembled by her mother and is now being published with help from her father’s former employer and FORCE, a UK cancer survivor charity.

"I wrote about the things I found difficult like going to sleep. I hope that my book helps other children and lets them know they are not alone." (BBC)

Some of Milly’s suggested activities include: making a color-coded “feeling chart”; creating a recipe for a “happy feelings cake” and drawing a picture of what it would look like; and, drawing a “circle of life” diagram to illustrate how all living things, including plants and animals, live and die.

PDF’s of some of Milly’s activities are available from FORCE’s website.

Planning for Long-Term Care: With or Without the Help of Children

U.S. News & World Report offers this interview with author Alexis Abramson about how children can work with their parents to plan for eldercare, and the importance of an open dialogue.

What if you need to plan for your care and you do not have children? This article from The Seattle Times gives some good advice on finding professionals who can help.

As War Continues, Children Continue to Deal with Grief

Children typically revisit a loss as they grow and change developmentally. This article in the New York Times examines how children of soldiers killed in Iraq are dealing with these losses, and how the Tragedy Assistance Program for Survivors (TAPS) helps them cope with the unique issues they face.

Safety While Caregiving Should Not Be Overlooked

Nancy Norris, a licensed clinical social worker, gives some tips on home safety for caregivers that are often overlooked in this Ledger Dispatch (Amador City, CA) article.

Tutu Discusses Differences In Death and Dying Rituals

Naomi Tutu, daughter of Archishop Desmond Tutu, shared her experiences with the rituals surrounding death and dying in her home country of South Africa and in the United States. She contrasted the more private, shorter rituals often found in the U.S. with the more communal rituals, often taking place over a year, in South Africa. Ms. Tutu spoke at Union College on behalf of the Foundation for Hospices in Sub-Saharan Africa.

(www.fhssa.org)

Vigil Hospice Volunteer Programs Offer Care at the End-of-Life

The Sun Chronicle (Massachusetts) and and the Chicago Tribune have published articles on vigil volunteers. These are hospice volunteers who are available to be with a dying person when death occurs.

Vigil volunteer are generally experienced hospice volunteers, who have already received training and provide hospice support such as respite for caregivers, transportation for patients or other assistance like running errands. The volunteers had an additional two hours of training for the vigil program.

“Back Off on Hospice Care”: Journalist and author Myra MacPherson responds to Opinion piece on end-of-life decision-making

Myra MacPherson has written a cogent examination of hospice care for The Washington Post, focusing on some of the common myths and misperceptions that still exist after more than 25 years. Ms. MacPherson, a member of the International Work Group on Death, Dying and Bereavement, is a journalist and an author. She also serves on the board of the Hospice Foundation of America.

Ms. MacPherson’s piece is in response to a recently published Opinion piece by Charlotte Allen, “Back Off! I’m Not Dead Yet”, published in the Outlook section of The Washington Post.

Ohio Marks Living Wills and Advance Directives Week, Oct. 14-20

Ohio Gov. Ted Strickland has declared October 14-20 to be Living Wills and Advance Directives Week. This article describes the various documents that can be useful when making end-of-life decisions, as well as how people can have their wishes honored when they can no longer make those decisions for themselves.

While the article focuses on completing documents in Ohio, the Hospice Foundation of America has some general information about Advance Directives.

The Controversy Over Medical Futility Laws in Texas

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

Perinatal Hospice Programs Offers Assistance for Families Experiencing the Earliest Loss

This article in The Des Moines Register discusses the Perinatal Hospice Programs at a local hospital. The program is "for patients who have been given a nonviable diagnosis or a life-threatening diagnosis for an unborn child." A March 2007 Health article from The New York Times provides an excellent description of perinatal hospice and its history.

The Positive Role Hospice Volunteers Play in End-of-Life Care

This post from The Kansan.com shares the experiences of a hospice volunteer at Hospice Care of Kansas. One volunteer, Jennifer Wedan, explains why she became a volunteer. '“I wanted to give something back. Something was laid on my heart to help people go through this experience.”'

Hospice Program Helps Patients Keep Pets

Pets are a central part of many peoples' lives, bringing comfort and companionship. Yet when someone becomes terminally ill, it can be difficult to keep up with a pet's care, or even keep a pet at all if the illness necessitates a move. One hospice program in Tulsa, Oklahoma, has developed an innovative program to allow people to keep their pets even as they face illness and death.

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

Dr. Kenneth J. Doka

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

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

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

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

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

A Man's Perspective on Caregiving

Seth B. Goldsmith, a director of company that operates nursing homes and assisted-living facilities, discusses his role as caregiver for his wife. The Caregiver.com article lays out Goldsmith's ten steps for effective caregiving, which he developed as a result of conversations with friends and family after his wife's death in 1995. The male perspective is often missing from the caregiving dialogue, even though 25% to 41% of family caregivers are men.

Report Shows That African-Americans Continue to Receive Hospice Care Less Than Whites

A new study in the Journal of Pain and Symptom Management shows that African-Americans with a non-cancer diagnosis are less likely to receive hospice care than whites with a similar diagnosis. While data shows that this "racial gap" has gotten smaller in the last few years with patients with a cancer diagnosis, there is still outreach to be done.

Ruby L. Bailey of the Detroit Free Press addresses this study and the mistrust and different cultural values that have helped to feed this gap.

Hospice as a Model for Caregiving

HFA's book, Caregiving and Loss: Family Needs, Professional Responses, includes a chapter by Marcia Lattanzi-Licht, which addresses the partnership that is formed between a family and hospice personnel for terminally ill patients. An excerpt:

Hospice as a Model for Caregiving

The partnership formed between a family and hospice personnel can ensure quality care for a person who is dying. Hospice support­ive services are designed to offer information and back-up to fami­ly members so that they will be more able to care for their loved one. Hospice care focuses on addressing some central goals:

• To support individuals and families coping with dying


• To enhance quality of life through comfort care rather than treatment focused on cure


• To aggressively treat and expertly manage all pain and physical symptoms associated with an individual's dying


• To care for the whole person, addressing physical, emotional, psychological, spiritual, and social needs through an interdis­ciplinary team approach


• To confirm the individual's and family's sense of self worth, individuality, autonomy, and security


• To acknowledge and offer support for individuals and their family members facing the losses and grief associated with dying and the death of a loved one


• To extend bereavement support for family members following the death of their loved one


• To be a positive influence upon the understanding, compas­sionate treatment, and care of the dying and bereaved


• (Lattanzi-Licht, Mahoney, & Miller, 1998).

These overall goals are the foundation for hospice and form the value base for its services and activities. When caregiving is offered in the context of these desirable approaches, the individual who is ill experiences an enhanced sense of security and worth. Caregiving that is grounded in a philosophy of caring that respects the wishes of the person who is ill and the family, and maximizes their functioning, represents the kind of support people appreciate most. While many are familiar with the principles of hospice, it is important to explore the application of these principles. The values of hospice represent universal approaches to caregiving and create a blueprint that advances the human experiences of caring.

by Marcia Lattanzi-Licht
© 2001 Hospice Foundation of America
See the Table of Contents from Caregiving and Loss: Family Needs, Professional Repsonses.

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

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

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

Prejudice Against Gays Experienced By Those Receiving Eldercare

A recent New York Times article, "Aging and Gay, Facing Prejudice in Twilight," addresses the current difficulties faced by gays and lesbians needing eldercare. The article reports that elderly gays in nursing homes, assisted-living centers and those receiving home care report being disrespected, shunned or mistreated.

Some elderly gay people have begun a national drive to educate care providers about the social isolation and discrimination they are facing. The articles also discusses some solutions that are being offered to the problem.

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

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

Supporting Children's Grief Through Shared Experiences

When a family deals with loss, children need special support in their grief. Reporter Maja Beckstrom, in her article The ABCs of Grief, highlights the stories of some families in the Twin Cities who found support from professionals and other families dealing with loss.

For many young people, learning that other children are coping with grief helps them to feel less alone. Read an article by a 14-year-old boy writing about his experience of loss.

World Health Organization Issues First-Ever Guide to End-of-Life Care

This week, the World Health Organization released a document aimed at national health ministers. The guide contains formulas for calculating how many people in a country are in need of such care, and outlines typical obstacles to providing it: national laws that make it hard for pharmacists to stock powerful painkillers, lack of training for doctors and nurses, and fears of addiction on the part of patients. It also cites countries that offer good end-of-life care despite national poverty, notably in Uganda and in the state of Kerala in India.

Health Commentary's Video Blog on Hospice

This video blog by Dr. Mike Magee for Health Commentary does an excellent job of explaining what hospice is and how it works. The Health Commentary website allows viewers to upload their own videos regarding healthcare.

For more information on myths and facts about hospice care, see HFA's Hospice Info - Myths and Facts. Also, HFA held a live telephone network program in March 2006, which discussed the basics and benefits of hospice care.

A Professor's Final Lecture to His Students and Beyond

Carnegie Mellon professor Randy Pausch's final lecture to his students has been widely reported on. Pausch is suffering from pancreatic cancer and has a few months to live. His words have inspired not only the students he teaches, but a much larger audience on the importance of living your life to the fullest each day.

HFA's A Guide to Recalling and Telling Your Life Story is a beautiful, award winning workbook designed to help a person tell his or her life story. Page by page, it suggests topics--such as Family, Adult Life, Growing Older, and Reflections--and questions to reflect upon. The questions can be helpful to the person sharing the memories, as well as provide other family members with a way to elicit stories and experiences.

Celebrate World Hospice and Palliative Care Day

World Hospice and Palliative Care Day is October 6th. The celebration will include Voices for Hospices, a global musical marathon event which has over 500 concerts around the world. World Hospice and Palliative Care Day is a unified day of action to celebrate and support hospice and palliative care around the world.

For more information, go to www.worldday.org

The Financial Costs of Caring for a Spouse

Claire Howard of the Journal Star reports on the financial implications of caregiving for patients with chronic or terminal illness. In most cases in the United States, spouses cannot be paid as caregivers, forcing many couples to make difficult decisions regarding care. Many spouses work outside the home, placing their loved one in long-term care or a nursing home. Others resort to divorcing in order to be paid for giving care to their former spouse. Howard relates personal examples of these difficult choices.

Valuing the Invaluable

This issue brief, released by AARP in June 2007, tries to put a monetary value on the services provide by the “informal” or “family” caregiver. Informal caregivers provide the majority of long-term care services, yet they often go unrecognized. Furthermore, these informal caregivers often spend their own money to support family members in addition to losing wages and other job benefits, frequently having to cut back on work or give up working entirely. The issue brief concludes with some suggested policy changes that could be implemented at a small fraction of the value of the services these caregivers provide.

The Mental Health Effects of Caregiving

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

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

New Law in North Carolina Gives Patients More Control in End-of-Life Decisions

The new law, which took effect Oct. 1, allows patients to state whether they want medical treatment withdrawn at the end-of-life. There is debate about the law. Supporters argue it is easier for patient to convey their wishes, while opponents say the law is slanted towards withholiding treatment.

Local Editorial Honors the Work of Hospice in Improving End-of-Life Care

This editorial from the Tribune-Star (Terre Haute, Indiana) published September 29, 2007 stresses the importance of the hospice movement in elevating end-of-life care in the United States. Despite the availability of hospice services under Medicare, Medicaid and some private insurers, many programs rely heavily on outside donations, and the dedication of trained volunteers to assist in caregiving.

Caring for Family Members with Alzheimer's and Dementia Patients Creates Challenges

Jeanne M. West,a registered nurse and health care administrator, writes in a Pennsylvania newspaper of the difficulty providing care for those suffering from Alzheimer's disease and dementia. Despite the fact that West had taught caregiving skills for 20 years, with a particular emphasis on the care of seniors and those with dementia and Alzheimer's disease, she found herself challenged when she needed to provide care for her husband who was diagnosed with dementia. West is a past president and board member of the Central Coast Chapter (Santa Barbara, Calif.) of the Alzheimer’s Association.

Hospice Patient Shares His Outlook on Care

Some of the most powerful messages about hospice care come from those who benefit from it. Ben Forker, an Iowan who is terminally ill with cancer, shares his realistic but often upbeat views of facing death, with the help of hospice.

Novel Alzheimer's Conference Planned to Bring Together Those Experiencing the Disease

Los Angeles Times reporter Mary Engle writes about a unique conference planned by two patients in the early stages of Alzheimer's disease. Instead of gathering together caregivers, it will focus on people suffering from memory loss and other early stage symptoms. Organizers Richard Bozanich and Jay Smith, patients themselves, want to show others that 'There's still a lot of good living to do.' Bozanich and Smith are part of an early stage advisory board of the national Alzheimer's Association; they have lobbied Congress and spoken at conferences around the country. The conference will be held at Los Angeles' Skirball Cultural Center on Oct. 27, 2007.

HFA's Year 2004 initiave focused on Alzheimer's Disease. Read available chapters from the book Living With Grief: Alzheimer's Disease and other resources.

Spirituality in Medical Curriculum

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

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

Home Funerals: A New Option for Honoring Your Loved One

MSNBC reports a new trend in funeral care: keeping it at home. "A home funeral can encompass a memorial service, wake, viewing or a combination of the three. It's also an intimate experience: Friends or family members might help wash and dress the body, build or decorate a casket, plan a memorial service or accompany the deceased to the burial site or crematory."

In all but a few states, at-home ceremonies can be conducted with little regulatory interference. While not appropriate for some deaths—disfigurement, sudden loss, or when some family members are uncomfortable with the idea—participants oftentimes report that they more readily accept the finality of the loss, as well as feeling more "in control," of the death.

The Importance of Volunteers in Hospice and Palliative Care

Nancy Forsyth, a palliative care volunteer for 25 years, speaks of the importance of volunteering to care for the terminally ill. Forsyth has an aggressive form of lung cancer and is forgoing further treatment for the cancer. The Shoreline Beacon article discusses how her experience as a volunteer is helping her while dealing with her own illness.

Are you interested in becoming a hospice or palliative care volunteer ? Volunteers in hospice find it personally gratifying, intellectually stimulating, and emotionally meaningful to assist those in need at a critical point in their lives.