Understanding Grief Video Available on Hospice Information Center

“Understanding Grief,” HFA's new, 25-minute video, offers more than a cursory look at a subject that will affect everyone at some point in their lives. Frank Sesno, a former CNN Correspondent and current host of HFA's Living with Grief^® educational series, pulls together the expertise of Ken Doka, PhD, a recognized expert in the field of grief and loss, and the experiences and observations of Maria Shriver, former First Lady of California and member of the Kennedy family whose many experiences with grief were anything but private, into an interesting and informative presentation with easy-to-digest explanations and useful tips for people who are grieving and those who want to help them. The program is subtitled for the hearing impaired, and is available at the Hospice Information Center or watch below. It was produced with funding from a grant by the Centers for Medicare & Medicaid Services.

Challenges for Hispanic Caregivers

Karen Stabiner writes in today’s New Old Age blog about some of the strains placed on Hispanic caregivers as they try to take care of aging family members.

Caregiving obligations are deeply felt in many Hispanic families; even those with few resources traditionally have not hesitated to assume responsibility for aging parents. But these days familialismo is running up against harsh modern realities. According to Jacqueline Angel, professor of sociology and public policy at the University of Texas, many Hispanic families are struggling with language barriers that make navigating the health care system difficult, and with poverty that limits care options and makes retirement planning an elusive, unaffordable dream.

Hispanics also live longer on average than African-Americans and non-Hispanic whites, despite higher levels of poverty and less health insurance coverage — a combination so unusual that researchers call it the “Hispanic paradox.” At the same time, Hispanics experience higher rates of diabetes and obesity than non-Hispanic whites, which complicate caregiving at home.

Those responsibilities most often fall on women, as they do in most families. “They often underutilize formal services and experience a great deal of stress,” said Maria Rosa, vice president of the National Council of La Raza’s Institute for Hispanic Health. “Still, because of language barriers, low income, lack of insurance or a genuine feeling of responsibility, Latinos continue to use family as a primary source of care. ” In the 2008, the last year for which data are available, the percentage of Hispanics over age 65 living with relatives was about double that of the total population of older adults.

HFA’s Hospice Information Center offers many free print resources to address diverse communities, including Spanish-language resources such as Cómo Cuidar a Alguien que está Muriendo (Caring for Someone Who is Dying). A short video, Comprendiendo el Cuidado en un Hospice (Understanding Hospice) is also available here.

Candid Discussions about Palliative Care with Advanced Cancer Patients Urged

The American Society of Clinical Oncology (ASCO) released a policy statement recommending physicians engage patients in talks about palliative care and treatment options soon after their advanced cancer diagnosis.

“While improving survival is the oncologist’s primary goal, helping individuals live their final days in comfort and dignity is one of the most important responsibilities of our profession,” said ASCO President George W. Sledge, Jr., MD. “Patients have a right to make informed choices about their care. Oncologists must lead the way in discussing the full range of curative and palliative therapies to ensure that patients’ choices are honored.”

A study published in the New England Journal of Medicine last year showed that patients with advanced lung cancer who received palliative care early lived nearly three months longer than patients receiving standard treatments, despite the fact that they frequently requested fewer aggressive treatments.

Sargent Shriver - A Recollection

In 2004 HFA was organizing for its annual Living with Grief^® educational program on Alzheimer’s Disease. The nation had learned the prior year that Sargent Shriver was diagnosed with the disease and I thought it might make a wonderful addition to the program to include him in some way, although I knew his disease progression had been rapid.

I contacted my friend Anthony Shriver, Sargent Shriver’s son. As the founder of Best Buddies, a national charity that fosters opportunities for developmentally disabled youth, Anthony recognizes the need for collaboration and cooperation, and is always helpful. Anthony invited us to bring a video crew to his home a few days before Christmas, when his father and mother (Eunice Shriver) would be visiting.

Having had some experience with Alzheimer’s home-caring for my mother-in-law for several years, I was prepared for anything to occur. In order to minimize disruption we limited our crew. We entered a house full of Christmas excitement with children running around, presents being wrapped and a huge tree just finished being trimmed. Sargent Shriver was sleeping out by the pool (it was Miami, after all) and so we waited until he arose. After about a half-hour Mr. Shriver awoke, but became agitated by the excitement and the strangers. I was concerned. But upon seeing the video crew he was transported back to some earlier time when lights and cameras typically surrounded him. All of a sudden the Alzheimer’s came under control and Mr. Shriver knew he had to follow a teleprompter. It was like turning on a switch. In a moment he became all at once charming, funny, sincere and caring of the crew. The nastiness that can be Alzheimer’s disappeared and the natural grace for which the family is known came to the fore.

Re-looking at the video upon his death I think that sincerity and grace comes through. Sargent Shriver brought a special dignity that enhanced his commitment to his causes, and we are a better society for his presence.

David Abrams, former President and CEO of Hospice Foundation of America

Awards Honoring Physician Excellence in End-of-Life Care Announced

The recipients of the second annual Hastings Center Cunniff-Dixon Physician Awards, honoring excellence in end-of-life care, were recently announced.

This year’s awardees represent the very best traditions of the humanism of medicine and the best in doctoring,” said selection committee member Richard Payne, MD, Esther Colliflower Director of the Duke Institute on Care at the End of Life and a Hastings Center board member.

. . .

The awards were made in three categories: a senior physician category for leadership in end-of-life care, a midcareer physician category for longstanding commitment to serving patients and for leadership in palliative care, and an early-career physician category for serious commitment to the field and contribution through practical research or clinical work.

• Ann Allegre, MD, FACP, FAAHPM, director of medical programs at Kansas City Hospice and Palliative Care in Kansas City, Mo., received the senior physician award of $25,000. Dr. Allegre is a pioneer in hospice care and palliative medicine, coming to the field before formal training programs were available or professional literature existed. She has developed hospice and palliative care services as well as physician education and training programs throughout Kansas City and has been recognized for national leadership by the American Academy of Hospice and Palliative Medicine.
• Anthony Nicholas Galanos, MA, MD, medical director of the Duke University Hospital Palliative Care Service in Durham, N.C., received the midcareer physician award of $25,000. A geriatrician, Dr. Galanos has worked for more than a decade to establish a palliative care service at Duke, dramatically improving the quality of end-of-life care there. Colleagues and patients recognize him for outstanding skill at managing difficult symptoms, as well as for his grasp of the art of medicine, evidenced by compassion and providing spiritual and psychosocial support.

Early-career awards of $15,000 each were given to three physicians:

• Stefan J. Friedrichsdorf, MD, medical director of the Department of Pain Medicine, Palliative Care, and Integrative Medicine at Children’s Hospitals and Clinics of Minnesota, for innovative symptom management of pediatric patients, compassion, and family-centered care
• Savithri Nageswaran, MBBS, MPH, assistant professor of pediatrics at Wake Forest University Baptist Medical Center, for providing palliative care for children with complex, life-threatening medical conditions
• Eric W. Widera, MD, director of the Hospice and Palliative Care Service of San Francisco Veterans Affairs Medical Center and an assistant professor of geriatrics at the University of California San Francisco, for his humility, his commitment to his patients and their families, and his leadership in creating forums of communication on geriatric palliative care issues

The prize recipients were selected by a committee convened by The Hastings Center. In addition to Richard Payne, the committee consisted of Thomas P. Duffy, MD, of Yale University; Kathleen M. Foley, MD, of Cornell University and Memorial Sloan-Kettering Cancer Center; and Larry R. Churchill, PhD, of Vanderbilt University.

The awards are given by the Cunniff-Dixon Foundation and The Hastings Center, and administered by The Duke Institute on Care at the End of Life.

New Program Focuses on Aging and End-of-Life Challenges in the LGBT Community

The Hospice Foundation of America (HFA) has developed a new resource, “Aging and End-of-Life Challenges in the Lesbian, Gay, Bisexual and Transgender (LGBT) Community.” This free online webinar, written by Kimberly Acquaviva, PhD, MSW, helps organizations better serve older LGBT adults and their loved ones who are coping with progressive illness, loss and grief. In addition to the program, additional resource lists and Fact Sheets can be downloaded for sharing with staff, students, and community members. Free Continuing Education credits (0.5 contact hours) are available for a wide range of professionals including nurses and social workers.

This program is part of HFA's Hospice Information Center, an extensive online library that also includes programs on Understanding Hospice, Family Caregiving, Coping with Cancer at the End of Life, and Understanding Grief. Resources are also available in Spanish and Chinese. This project is provided through the support of a grant from the Centers for Medicare and Medicaid Services (CMS) to support hospice and end-of-life care outreach and education.

Use of Advance Directives among Long-term Care Patients

The National Center for Health Statistics recently released findings from a 2004 National Nursing Home Survey and 2007 National Home and Hospice Care Survey showing that while two-thirds of nursing home patients have some sort of advance directive, fewer black patients than white patients do. Key findings:

· Overall, 28% of home health care patients, 65% of nursing home residents, and 88% of discharged hospice care patients had at least one advance directive (AD) on record.

· The most common types of ADs among home health care patients, nursing home residents, and discharged hospice care patients were living wills and do not resuscitate orders.

· Care recipients under age 65 years were less likely to have any AD than those aged 85 and over; black care recipients were less likely than white care recipients to have any AD in all three populations. These age and racial differences were larger in the home health care and nursing home populations than in the hospice care population.

Encouragingly, discharged hospice patients had the highest likelihood of having at least one advance directive in place, and the differential between black and white patients was smaller among hospice patients than in other settings.

Reimbursement for Voluntary Advance Care Planning Now Part of Medicare

UPDATE (1/6/11): The ‘voluntary advance care planning’ language will reportedly be pulled from the regulation. Read a summary of coverage from Kaiser Health News.

As of January 1, 2011, reimbursement for a voluntary advance care planning discussion during a Medicare patient’s annual wellness visit will be paid by the Centers for Medicare & Medicaid Services (CMS). By CMS’ definition:

Voluntary Advance Care Planning means verbal or written information regarding the following areas:

a. An individual’s ability to prepare an advance directive in the case where an injury or illness causes the individual to be unable to make health care decisions.

b. Whether or not the physician is willing to follow the individual’s wishes as expressed in an advance directive.

The Summary of Changes can be viewed here. See HFA’s website for more information on advance care planning.