Report on Hospice Referrals Presented

The American Geriatrics Society 2012 Annual Scientific Meeting included research presented on hospice referrals and comorbidities. Those referred to hospice late, with one week of enrollment, tended to have had complex comorbid conditions, lived with a spouse, and lived in an urban area.  Reported in Medscape Medical News:

Overall, 34.4% of patients are in hospice less than 7 days; the median length of stay has decreased from 26 to 21 days in the past 5 years.


"We tried to identify characteristics associated with shorter stays to help identify patients who were being inappropriately referred to hospice too early or too late," Sheila Rustgi, a medical student at Mount Sinai Medical Center in New York City, who presented the research, told Medscape Medical News.

The researchers conducted a cross-sectional study of 27,166 hospice users who died of cancer in 2002. They used multivariate logistic regression to compare factors related to hospice stays of 1 day or less with those related to more than 1 day, and factors related to stays of less than 7 days with those related to stays of 7 days or more.


. . .

The results were surprising, according to Rustgi. It is possible that patients in metropolitan areas have more opportunities for care and are thus less reliant on hospice, she said.


The marriage results were also unexpected. "The marital status surprised me, because we tend to think of someone with a spouse as having an advocate. But maybe that conversation is more difficult to have when there is a spouse," said Rustgi.

Living on Your Own with Alzheimer's

USA Today published a story about Elaine Vlieger, a 79 year-old woman living alone while dealing with the challenges brought on by the disease.

Some 800,000 people with Alzheimer's, roughly 1 in 7 Americans with the disease, live alone in their communities, according to surprising new data from the Alzheimer's Association. It's a different picture of the mind-destroying disease than the constant caregiving that eventually these people will need.



Many such as Vlieger cope on their own during dementia's earlier stages with support from family and friends who keep in close contact.

Vlieger has support from her daughter-in-law who lives nearby. For every one person with dementia, there are numerous others in the picture, providing care as the disease progresses. When a person enters the final stages of dementia, care needs become more intensive and demanding.

Many people are surprised to learn that hospice is available to help care for people in the end stages of Alzheimer’s disease and other dementias. HFA's free program, “Alzheimer’s Disease and Hospice Care” explains how hospice helps persons with advanced dementia face the end of life with compassion and dignity.

Cancer Patients and Referral to Hospice

Researchers from the Dartmouth Institute for Health Policy and Clinical Practice reported at a recent conference on the quality of care received at the end of life for poor-prognosis cancer patients. They looked at 215, 000 Medicare patients in over 4,400 hospitals.

Reported by The Advisory Board Company:

The authors found that cancer patients received high levels of inpatient care in the last month of life, regardless of hospital type, size, and for-profit status. The results were discouraging:


•30% of patients died in the hospital


•65% of patients spent some time of the last month of life in the hospital


•Only 54% received some hospice care in last month of life; 9% entered hospice within three days of death, presumably too late to receive benefits of hospice care

 

Grief on Special Days

The spring brings many days set aside to celebrate special people-mother's day, graduations, father's day. Yet for those who are grieving, these days may just serve to remind them of their loss. It may be an adult dealing with the recent loss of her elderly mother, someone who had literally been a part of her life since the beginning. It may be a mother grieving the recent death of her child. This sentiment, expressed by someone in grief, may speak to many: "I wish they didn't print these days on the calendar; then we could just ignore them!"

But these days do exist, and it can be important for those who are grieving to think about ways to cope with these days. Some people choose to change their routine, if they are not ready to be among others who are in a more celebratory mode. Others may choose to recognize the person with a visit to the graveside or a donation to that person's favorite charity. As with most grieving situations, the central lesson remains clear-each person grieves differently and needs to find what works for him or her. Professionals can help grievers understand that different people do different things to cope with the challenges that arise from these special days, but we can all be proactive in deciding how to go on with our lives.

Helping children cope with grief on these days can be a special challenge. Dr. Kenneth Doka, Senior Bereavement Consultant for HFA, reminds professionals that certain activities, such as Mother's or Father's Day projects, can accentuate a sense of loss, and has this recommendation:

A teacher, knowing that Sally's mother had died recently, started a classroom discussion of "mothering." With her students, she created a list on the blackboard of what mothers do. Then she discussed with her students that many people in their lives who do "mothering"-parents, grandparents, godparents, aunts, uncles, sisters, brothers, and friends. The teacher reminded the class that this is a day to honor any and all who "mother" us.

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HFA's recent webinar, Grieving Children: How You Can Help is TODAY at 1-2pm ET and will be available on archive. Register now to watch the program live, or any time to watch on your schedule. 

Innovations in Caregiving Grants Winners Announced

MetLife Foundation and the National Alliance for Caregiving announced the recipients of their Innovations in Caregiving Grants Program. The following five organizations received $10,000 start-up grants to replicate family caregiver education and support programs in their local communities.

• Amherst H. Wilder Foundation in Saint Paul, MN for replicating Powerful Tools for Caregivers, a six-week education program that helps family caregivers of older adults to develop and practice self-care “tools” to thrive as individuals while managing caregiving responsibilities, specifically for the Hmong American community in St. Paul.
• Friends in Action, A Program of Mountain State Group of Boise, ID for replicating DARTS Workplace Eldercare Seminars, a program to enhance caregiver resourcefulness, competence and confidence as well as assist employers in providing work-life balance for caregivers.
• The Arc of King County of Seattle, WA for replicating Parent Advocacy Group, a program of regularly scheduled meetings where families of adults with developmental disabilities can learn about important issues, meet other families in similar circumstances, and receive training in advocacy for themselves and their loved one.
• ALS Association Florida Chapter of Tampa, FL for replicating Caregiver Connection Telephone Support Group, a program to meet the needs of family members caring for people with ALS. Support group facilitators will adapt an already established curriculum to add disease-specific information and coping skills needed by ALS caregivers.
• Oakland County Interfaith Volunteer Caregivers of Auburn Hills, MI for replicating Interfaith CarePartners, a program that will mobilize volunteers and resources in local congregations and the community, offering an array of direct services such as transportation, chores, housekeeping, repairs and friendly visits, as well as resources, education and support for family caregivers, including in-home respite.

Aging Conversation Starters

The SCAN Foundation has released a guide, Ten Conversations to Plan for Aging with Dignity and Independence, that "provides 10 key areas for conversation starters that can help you begin planning for the future you want as you grow older."

The guide is available in both English and Spanish.

Grieving Children: How You Can Help

The Hospice Foundation of America (HFA) will present a live, online webinar focusing on Grieving Children: How You Can Help on Wednesday, May 9 from 1pm – 2pm ET.


This webinar will offer child and adolescent grief, developmental benchmarks, intervention strategies, grief responses and the newest theoretical models regarding child and adolescent grief. The live webinar features Kenneth Doka, PhD, MDiv; David Crenshaw, PhD, ABPP, RPT-S; and Pamela Gabbay, MA, FT.

“The understanding that grief is not something you ‘get over’ has important ramifications for young people,” states Dr. Doka, Senior Bereavement Consultant at HFA. “Losses they experience early in life may be revisited at critical times throughout their lives. The more those who work with children and adolescents realize this, the more equipped they will be to help young people cope with grief and incorporate loss in their lives in ways that are mentally and physically healthy.” During the program, the panelists will offer proven approaches and techniques that can support and comfort the sometimes invisible population of grieving children. Participants will have a chance to hear discussions of time-tested literature as well as newer research.

This program is ideal for a range of healthcare professionals including counselors, social workers, clergy, nurses, and also educators, teachers and other school-based professionals.

Register now to learn from the experts.

Webinar panelist David Crenshaw is Director and Founder of the Rhinebeck (New York) Child and Family Center, LLC, and board certified in Clinical Psychology. Dr. Crenshaw has written numerous books on child and adolescent grief and was awarded the Excellence in Psychology Award by the Hudson Valley Psychological Association. Ken Doka is Professor of Gerontology at the Graduate School of The College of New Rochelle and senior consultant for HFA. Additionally Dr. Doka has served as President of the Association for Death Education and Counseling and was elected to the Board of Directors for the International Work Group on Dying, Death and Bereavement. Pamela Gabbay is the Director of Mourning Star Centers and Programs at The Mourning Star Center for Grieving Children in Palm Desert, California where she works with grieving children, teens and their families. She serves on the board of the National Alliance for Grieving Children and also serves as camp director of Camp Erin in Palm Springs.

Register now to participate in the live presentation and interact with the panel during a question and answer segment at the end of the presentation. Or choose to view the program at a time that better fits your schedule, up to one year after the initial live air date. Registration is $85 for an organization or $35 for individuals. CEs are available for an additional $10 per person. Learn more about this and other programs in the Lunch 'n Learn series.

Click here to register today!

The Beauty of a Slow Death

Michele DeMeo left a message on my voice mail recently. “I know you must be busy,” her message said, “but if you have time I’d like to talk to you. I am terminal with ALS.”

I called Michele back. Physically weakened from ALS, she had pneumonia to boot, and her voice was barely a whisper. We talked about her health and her prognosis. Michele told me that she was an expert in healthcare disinfection, surgical instrumentation and sterilization and that she had recently published a book.

While I can’t remember her exact words, she said something like, “This isn’t your normal book about dying.” She offered to send me a copy. Several days later, The Beauty of a Slow Death arrived. In the interim, I had searched for Michele online. Our conversation had left me curious. That was when I discovered that she wasn’t speaking in hyperbole when she had told me about her professional accomplishments. She really was an expert, up until recently giving talks about surgical instrument sterilization worldwide and publishing scholarly papers one after another. What she hadn’t told me: She is 38.

“I never expected that I would be preparing for my passing at this young age,” she writes in her book. “At the same time, I never expected that this very experience would be credited for helping me live life to its fullest, appreciating all things, big and small, that each day has to offer. I have found this journey to be a beautiful one, and I believe that if we could just begin talking about death and dying earlier we would be better prepared to focus on what really matters before life’s door begins to close.”

Self-described as a “gay, highly-functioning autistic woman,” Michele writes about the cold manner of the physicians who gave her the news about ALS, and about coming to terms with her past and future. At the same time, she manages to write a motivational book about embracing life as much as one can in the face of terminal illness, about personal growth, about the importance of humor in the face of adversity.

“Whether we’re told we have days or months to live, or we have every reason to believe that we’ll be here 50 years or more, the bottom line is we owe it to ourselves to live the best we can,” Michele says. “Our life goals and abilities may change over time, but we still have the power to take charge of our lives in a positive, meaningful and productive way.”

Despite her pearls of wisdom, Michele’s book likely won’t be a best seller, because she’s right, most people don’t want to think or talk about death, even when faced with it head on. But her very honest book is worth reading. This isn’t your normal book about dying.

Hospice Foundation of America will interview Michele DeMeo for its fall program, Artificial Nutrition and Hydration at the End of Life.
The Beauty of a Slow Death – Understanding Acceptance and Learning to Live Differently Can Lead to Peace, is available for purchase online from Amazon, Barnes & Noble and www.createspace.com/3805209. Michele is donating a portion of the proceeds from the book to the International Association of Health Central Service Materiel Management training and education.

Amy Tucci, President and CEO, Hospice Foundation of America

A Different View of Alzheimer's Patients

The Well blog posted a slideshow from a photo exhibition and book of Alzheimer's patients by Cathy Greenblat:

The book, “Love, Loss and Laughter: Seeing Alzheimer’s Differently,” was written by Cathy Greenblat, a professor emerita of sociology at Rutgers University who found a second career as a photographer. The exhibition has toured the world and is currently on display at the Michael Schimmel Center for the Arts at Pace University in Manhattan.

“I wanted to show what many people don’t know about Alzheimer’s,” Ms. Greenblat said, “that there are ways we can take care of people that build on their remaining capacities instead of just protecting them from danger.”

In one of the many vivid photographs in her book, Ms. Greenblat shows an elderly Houston woman named Luleene, a former musician who played the organ, sang and loved animals, with her husband, Joe. To help her feel connected to her past, the hospice that assists her includes sessions with a music therapist in her weekly program as well as visits with pets.



Alzheimer's Disease and Hospice Care

More than 5 million people live with Alzheimer’s disease and related dementias in the U.S. today, and this number is expected to grow even higher. And for every one person with dementia, there are numerous others in the picture, providing care as the disease progresses. When a person enters the final stages of Alzheimer’s disease, care needs become more intensive and demanding. Many people are surprised to learn that hospice is available to help care for people in the end stages of Alzheimer’s disease and other dementias. This program, “Alzheimer’s Disease and Hospice Care” will help you understand how hospice helps persons with advanced dementia face the end of life with compassion and dignity.

National Healthcare Decisions Day

Today is National Healthcare Decisions Day, an initiative to encourage patients to express their wishes regarding healthcare and for providers and facilities to respect those wishes, whatever they may be.

National Healthcare Decisions Day (NHDD) exists to inspire, educate and empower the public &providers about the importance of advance care planning. NHDD is a collaborative effort of national, state and community organizations committed to ensuring that all adults with decision-making capacity in the United States have the information and opportunity to communicate and document their healthcare decisions. For more information, go to www.nhdd.org.

As a participating organization, Hospice Foundation of America encourages all of us to Have the Talk - discuss what care you want at the end of life with your friends and family members, and complete an advance directive.