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Report on Hospice Referrals Presented

Wed, 2012-05-16 11:30
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

Mon, 2012-05-14 11:30
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.





For Mothers Day...

Sun, 2012-05-13 13:07


Click to read:
Real meaning & history of Mother's Day (kotapress article)

Bereaved Mothers: the hardest job of all (Dr. Jo's blog)

Honoring All Mothers (ideas for coping and way to honor Mother's Day when bereaved - MISS Foundation)

Supporting bereaved families in honor of Mother's Day (MISS Foundation)

Cancer Patients and Referral to Hospice

Fri, 2012-05-11 12:30
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

Wed, 2012-05-09 11:16
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.


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. 


Breaking through...

Mon, 2012-05-07 18:49
Click image to see larger size! 
This is still one of my all time favorite spreads from the Different Kind of Parenting zine we used to publish in print. I do everything on the blog(s) now, but the archive of PDF version of these print issues is still available free at:

http://www.kotapress.com/section_home/parentingZine_archive.htm

Miracles,
k-

Innovations in Caregiving Grants Winners Announced

Thu, 2012-05-03 13:53
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

Wed, 2012-05-02 13:54
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.




Update on available materials and submission guidelines...

Fri, 2012-04-27 20:25

Many thanks to everyone for your readership here at KOTA blog and Kotapress website over the years.  The KOTA blog here remains available online and will be *very intermittently* updated with new posts of in-house and invited materials only.  We are not accepting submissions of any other kind at this time.  The website, on the other hand, remains available online as archived material only, no longer being updated, nor is accepting new materials.

Other of our resources that remains current and offered are:




For individual authors with materials posted here or on the KOTA site:

We are glad to keep materials available as an archive, but we do not have staff, time, nor funding to do archive updates, deletions, additions. If the information we published for you is out of date or you are somehow embarrassed by it now, we are sorry to hear it. But the archive stands as it. As of Spring 2012, we are only publishing in-house and invited materials.  Thanks.


-k.jones, kota & mizuko's momma

Grieving Children: How You Can Help

Thu, 2012-04-26 10:39


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

Tue, 2012-04-24 15:10
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

Tue, 2012-04-24 10:18
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

Mon, 2012-04-16 06:18

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.

National Volunteers Week - Celebrating Hospice Volunteers

Fri, 2012-04-13 09:52
April 15 - 21, 2012 is National Volunteers Week and hospices know the vital role over 460,000 volunteers play in providing quality patient care for dying patients and their families. Hospice volunteers perform a wide variety of vital services, including support for patients, respite care, bereavement support and more. In fact, hospice volunteers provide more than 20 million hours of service annually. HFA thanks these key members of the hospice team for the dedication they show each and every day.
Have you thought about the rewards of becoming a hospice volunteer? Learn more about what being a hospice volunteer means or watch this short video to hear from other volunteers.


Are you a hospice worker interested in expanding your volunteer program? Watch “Hospice Volunteers: Recruiting, Retaining, Rewarding,” a free online webinar that examines the important role that volunteers play in hospice, and explores creative ways that hospices can recruit and retain volunteers. The program includes tips and ideas from professional hospice volunteer coordinators, as well as personal insights from hospice volunteers. The program, plus additional resources and Fact Sheets, can be used as for volunteer recruiting and training purposes at no charge.

AIDS Memorial Quilt Returning to Washington, DC

Thu, 2012-04-12 09:30
The NAMES Project Foundation is bringing The AIDS Memorial Quilt in its entirety back to Washington this summer for its 25th anniversary. The Quilt is made up of 47,000 panels (and counting) -- each hand-sewn by friends and families of more than 94,000 people in the U.S. and globally who have lost their lives to AIDS.


The XIX International AIDS Conference (AIDS 2012) will be in Washington, DC this summer, and The Quilt will be displayed on part of the National Mall, in 40+ venues throughout Washington area, and during the Smithsonian Folklife Festival via “Creativity and Crisis: Unfolding The AIDS Memorial Quilt.”

The Foundation is calling on the public to join its efforts as it prepares to bring all 54 tons of The Quilt to Washington for a full roster of activities in June and July. Go to Quilt2012.org to sign up to volunteer.

Family Caregiving Awards Announced

Tue, 2012-04-10 08:51
The Family Caregiver Alliance announced their second annual “Best of” awards, a compilation of the key developments during the past year that affect family caregivers.
The “Doctor’s Know Best” award goes to Dr. Ken Murray, a Clinical Assistant Professor of Family Medicine at the University of Southern California. Dr. Murray’s article, “How Doctors Die- It’s Not Like the Rest of Us, But It Should Be” addressed the differences in how doctors treat end-of-life decision making when they are diagnosed with chronic illnesses. His article is a thoughtful critique of how our current healthcare system, families, and doctors approach end-of-life care.

The Best “Personal Account: Hospice Care for a Loved One” goes to Eleanor Clift, for her article, “Hospice And The ‘End Game,’” in which Clift shares the experience she and her late husband, Tom Brazaitis, had with his hospice care. Brazaitis, also a veteran political reporter, was diagnosed with stage 4 cancer, and Clift explains, “He drew on an inner strength that I think surprised him as much as it did me.” Her poignant account weaves together their story with an analysis about the politics involved in end-of-life decision making.
See the complete list here.

Self-Study Course for End-of-Life Ethics

Wed, 2012-04-04 14:53
Be Among the First 100 to Sign up for Ethics Self-Study in April and get a Hot, New Book for Free!
"The Best Care Possible" by Ira Byock, MD, was just released and we only have 100 copies to give away, so hurry! Register today!

"END-OF-LIFE ETHICS" SELF-STUDY COURSEEnd-of-Life Ethics will examine, using a case study approach, the ethical issues and dilemmas that emerge at the end-of-life, the principles of ethical decision-making and the effects of these decisions on staff and families. Case studies will be used to illustrate ethical issues that will be addressed by the program panel.

This self-study course has been approved for three (3) basic contact hours. Included with your self-study packet is a full-length DVD (approximately 2.5 hours), companion book, program guide (with program information), and detailed instructions. Continuing education credits (3 hours) are included in the cost of your registration.

The self-study course is an economical and convenient way to earn continuing education hours at home and add valuable resources to your professional library.

Register Today.
THE BEST CARE POSSIBLE
In addition to offering a complimentary copy of "The Best Care Possible" to the first 100 individuals who sign up for the End-of-Life Ethics self-study course, HFA is proud to feature Dr. Ira Byock on the first program in HFA's new audio series, Professionally Speaking. "A Conversation with Ira Byock" is available at no charge on HFA's website and on iTunes for you to listen online or download to your phone, mp3 player or computer.

Dr. Ira Byock, Director of Palliative Medicine at Dartmouth-Hitchcock Medical Center, has published numerous articles on the ethics and practice of hospice, palliative and end-of-life care. Byock's most recent book, The Best Care Possible, was published in March 2012.
"In The Best Care Possible, Dr. Byock, with compassion and insight, puts a human face on the issues by telling richly moving, heart-wrenching, and uplifting stories of real people-young and old-during the most difficult moments in their lives. ...It is a compelling meditation on medicine and ethics told through page-turning life or death medical drama. Passionate and timely, this important book has the power to lead a new kind of national conversation."                 - Exerpt from The Best Care Possible book jacket

Register for HFA's "End-of-Life Ethics" self-study course and receive your free copy today.*

*The Best Care Possible was published in March, 2012; the retail value is $26.00.

Behind the Camera, End-of-Life Ethics, Show Producer

Tue, 2012-04-03 12:51
Amy Green Thrasher is an award-winning journalist and television producer who has been in the business for over 25 years. She has covered government and politics in Chicago and Washington, produced national talk-show segments for CBS News and CNN. For the last 15 years, Thrasher honed her story-telling skills at America’s Most Wanted and non-profit advocacy organizations including AARP, the National Center for Missing and Exploited Children (NCMEC) and the National Association of Police Organizations (NAPO). She brings her passion for taking complicated subjects and communicating them in a lively, logical and fascinating way to her work as the Show Producer for Living with Grief®: End-of-Life Ethics. Thrasher has personal experience with hospice through her late mother’s treatment, and is very proud to give back to the wonderful hospice workers who took care of her mother during that difficult time.

Register to host a site  during the month of April and receive a complimentary two-month bulk subscription of Journeys: A Newsletter to Help in Bereavement. *

Register now to take advantage of this special offer!  The program is available beginning April 19th.

Journeys, A Newsletter to Help in Bereavement is published monthly by Hospice Foundation of America. Journeys subscribers include hospices, hospitals, funeral homes, assisted living centers, and other organizations that reach out to and provide resources for the bereaved. Sixty thousand people read Journeys each month.

Journeys authors are leaders in the field of death and grief. The newsletter helps organizations supplement the work of their own professionals to give their clients expert advice and support.

*Free two-month bulk-subscription includes ten issues per month, a $19 value.

Behind the Camera, End-of-Life Ethics

Fri, 2012-03-30 13:00
Today, HFA spotlights Bob Golombik, a member of the tremendous production team working to produce the Hospice Foundation of America’s 19th annual Living with Grief®: End-of-Life Ethics program, to be released on April 19th. The 2012 program, moderated by former ABC News 20/20 correspondent Lynn Sherr, the End-of-Life Ethics program will be a discussion of ethical issues and case studies that bring forth the most current thinking on ethics at the end of life. Bob Golombik is an award-winning broadcaster with over thirty years of media production experience, including 25 years with ABC News. He directed and associate directed Nightline, This Week, and World News Saturday and Sunday, as well as the Washington segments of numerous live special event broadcasts for ABC, including election night coverage and White House press conferences. After leaving ABC in 2006, Bob spent a year working in the non-profit sector before entering a new phase of his media career as an independent director/producer/consultant. Since then, he's worked with a wide range of broadcast, corporate, government and non-profit clients. Living with Grief®: End-Of-Life Ethics is his third collaboration with Hospice Foundation of America on their video productions.

Bob's work has been recognized for outstanding achievement many times throughout his career. While at ABC News he was the recipient of three Emmys, two Peabodys, and two Columbia-duPont awards. In 2010, Bob was awarded an electronic media journalism fellowship in Europe sponsored by the RIAS Berlin Kommission and the Radio Television Digital News Foundation. Most recently, his first production with HFA, Living with Grief®: Spirituality and End-of-Life Care received a 2012 Telly Award in the category of Religion and Spirituality.

Bob is a Phi Beta Kappa graduate of the University of North Carolina at Chapel Hill.


Register today to hear the conversation of six of country’s leading experts on End-of-Life Ethics.  The program is available beginning April 19th.

Improving End-of-Life Care for People with Intellectual Disabilities

Thu, 2012-03-29 11:09
The March issue of Journal of Palliative Medicine included a report of a three-year project in South London examining how access to palliative care could be increased for patients with intellectual disabilities. Researchers reported that both the caregivers of these patients and palliative care professionals did not understand each other's roles and what services each were providing.

Read HFA's interview with Claire Lavin, a professor of psychology at the College of New Rochelle in Westchester County, New York. A licensed clinical and school psychologist, she works with children and adults with disabilities in facilities and school districts in the greater New York City region. Here she offers advice for healthcare professionals when working with patients with intellectual or developmental disabilities who are facing the end of life.
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