Hospice and Caregiving Blog

Spiritual Care Important in Meeting Needs of Terminally Ill Cancer Patients

2009-12-16T11:10:00.002-05:00

Research published this week in the Journal of Clinical Oncology examined the spiritual needs of terminally ill cancer patients and whether they were being met by the medical team. Researchers at Dana-Farber Cancer Institute interviewed 343 patients at hospitals and cancer centers across the United States and concluded that supporting spiritual needs resulted in greater hospice utilization and less aggressive care at the end of life. Providing patients with spiritual care was associated with better patient quality of life. Health Day News also covered the study.

HFA's 2010 National Teleconference will focus on Cancer and End-of-Life Care, and addressing spiritual needs is an important component of the teleconference. At the end of the teleconference, participants should be able to:

Understand the complexities of professionals working with end-stage cancer patients and families when transitioning to hospice and palliative care from curative treatment, including how to employ effective communication skills, practices and protocols while also sensitively recognizing obstacles to the transition for the patient and family, which may involve medical, psychological, social, financial, caregiving, and spiritual needs. Validate programs that seek to bridge the move from treatment to palliative care as particularly helpful in today’s healthcare environment, as cancer patients often receive curative treatment up until several days before death. Understand that families may need help navigating the transition and should be supported throughout.

Describe the range of physical, psychological and spiritual reactions that people who are dying of cancer may have and how to respond to and validate those reactions through a variety of approaches and therapies, which include but are not limited to: effective pain management, reminiscence and life review, doula programs, dignity therapy, massage, music and meditation.

a.) Assess the varied and individual ways that families and other caregivers are coping with cancer and the imminent death of the patient, including whether they struggle with ambivalent feelings, complicated relationships, anger or guilt, and how to best intervene and provide support in a variety of situations, including those when a child or adolescent or an adult child is dying. Recognize and prepare to refer to patients and families to community assets available for support, including faith communities when appropriate.
b.) Understand that professionals, paraprofessionals, and volunteers caring for cancer patients often experience occupational stress that can be overcome in a variety of ways, including understanding the importance of intentional, focused behavior and the difference they make for patients and families.

a.) Acknowledge that decisions made and events that occur during the cancer illness and dying process can change the course of bereavement; understand that grief is individual and has multiple manifestations that may or may not need professional counseling and/or support, and that faith communities and other community organizations should be empowered to help give support to grieving people.
b.) Share awareness that professionals working with cancer patients can also experience vicarious grief, counter-transference and transference, and recognize that hospices can provide effective support to professionals as they cope with loss in their professional lives.

Worldwide Candle Lighting Service This Sunday

2009-12-11T07:00:00.001-05:00

This Sunday, December 13, will be the 13th annual Worldwide Candle Lighting Service of the Compassionate Friends.

The Compassionate Friends Worldwide Candle Lighting unites family and friends around the globe in lighting candles for one hour to honor and remember children who have died at any age from any cause. As candles are lit at 7 p.m. local time, creating a virtual wave of light, hundreds of thousands of persons commemorate and honor children in a way that transcends all ethnic, cultural, religious, and political boundaries.

Believed to be the largest mass candle lighting on the globe, the Worldwide Candle Lighting, a gift to the bereavement community from The Compassionate Friends, creates a virtual 24-hour wave of light as it moves from time zone to time zone. Hundreds of formal candle lighting events are held and thousands of informal candle lightings are conducted in homes as families gather in quiet remembrance of children who have died, but will never be forgotten.

Read HFA's interview with the Compassionate Friends Executive Director, Patricia Loder from 2008.

HFA Presents Webinar on Bereavement Camps for Kids: Benefits and Challenges

2009-12-09T11:07:00.002-05:00

Nationally-known expert Kenneth Doka, Senior Bereavement Consultant to Hospice Foundation of America (HFA), will host a discussion of the need for, and role of, bereavement camps as an intervention for children, adolescents, and their families during Hospice Foundation of America’s (HFA’s) live online webinar on Monday, February 1, from 1pm—2:30pm EDT. Dr. Doka will be joined by Sherry Schachter, Director of Calvary Hospital’s annual bereavement camp in New York; Angela Hamblen, Director of Camp Good Grief in Tennessee; Bonnie Carroll, Executive Director of TAPS, which offers support to those suffering the loss of a military loved one; and Lesa Linster, National Camp Erin Project Director at The Moyer Foundation.

“Almost 875,000 children and adolescents have experienced the death of a parent ,” states Dr. Doka. “Camps can be an innovative and successful milieu for supporting bereaved young people.” The speakers will examine underlying theoretical models of bereavement camps; identify some considerations in developing a camp program, including setting the target population, securing funding, and training staff and volunteers; discuss compliance issues; and explore some special issues that may arise. Schachter, Hamblen, and Carroll will each discuss their specific experiences in running a bereavement camp, focusing on camp structure, which children may benefit most from the program, and successful activities. The webinar and supporting materials will offer a toolbox of practical information such as intake forms, publicity materials, and hands-on suggestions.

“If you already run a camp, this webinar will reaffirm and review the most current information and best practices,” notes Amy S. Tucci, CEO/President of HFA. “If your organization is considering starting a camp, this webinar will be a great place to explore this new and viable approach to serving the bereaved youth of your community.”

Register here. The Organization Registration Fee is $100, which allows access to both the live webcast and an archived online program for one year past the live webinar, with unlimited CEs (1.5 hours) available for a wide range of professions. Individuals may register for the live webinar for $35 and 1.5 hours of CE credit is included for the registered individual.

To learn more about this exciting educational offering, contact HFA at 800-854-3402 or http://www.hospicefoundation.org/education/webinars.

Revised Hospice Payment System Fact Sheet Available

2009-12-03T11:04:00.001-05:00

From the Centers for Medicare & Medicaid Services (CMS):

The revised Hospice Payment System Fact Sheet (November 2009) is available. This fact sheet provides general information about the Medicare hospice benefit including coverage of hospice services, certification requirements, election periods, how payment rates are set, patient coinsurance payments, caps on hospice payments, and additional reporting required on hospice claims.

December 2009 Palliative Care Grand Rounds

2009-12-03T11:02:00.002-05:00

The December 2009 edition of Palliative Care Grand Rounds, a "monthly blog carnival" highlighting blog posts related to hospice and palliative care, is up at the Death Club for Cuties blog.

Hospice Care in the News

2009-12-01T17:11:00.000-05:00

An Associated Press article published this past Sunday looks at how hospice care has grown since the first hospice opened in the United States thirty-five years ago.

The number of Medicare hospice patients almost doubled between 2000 and 2007, to nearly 1 million. During the same period, Medicare hospice spending jumped 250 percent because of increased enrollments and longer lengths of stay, according to a committee that advises Congress on Medicare.

The medical community helped further legitimize the industry recently by offering certifications in hospice care for doctors, nurses and nursing assistants. The American Board of Medical Specialties first issued doctors certificates in hospice care in 2008, when it handed out 1,272 certificates.

In yesterday's Personal Health column from The New York Times, Jane Brody writes about a day she spent visiting four hospice patients with the Visiting Nurse Service of New York.

Hospice workers never know what they may find when they enter the homes of people whose doctors expect them to die within six months. But they are prepared to handle almost anything and have a team of specialists to call upon when needed: doctor, nurse, social worker, spiritual care counselor, bereavement counselor. The home hospice service is but a phone call away 24 hours a day, 7 days a week. The needs of patients and families are met within hours, if not sooner; moreover, the cost is usually covered by Medicare or Medicaid.
With hospice, death assumes a more natural trajectory, unencumbered by frightening machines and sometimes grotesque interventions of modern medicine that do little, if anything, to prolong life and often make dying more painful for patients and families, as well as costlier for society.
Indeed, studies have shown that, all other things being equal, patients receiving the comfort care provided by hospice tend to live longer and die more peacefully than those who continue to get intensive care for their disease when treatment has ceased to help.

Another great resource to find a hospice in your area is HFA's Hospice Directory, http://www.hospicedirectory.org.

Engage with Grace Blog Rally

2009-11-24T18:00:00.000-05:00

Last Thanksgiving weekend, many of us bloggers participated in the first documented “blog rally” to promote Engage With Grace – a movement aimed at having all of us understand and communicate our end-of-life wishes.

It was a great success, with over 100 bloggers in the healthcare space and beyond participating and spreading the word. Plus, it was timed to coincide with a weekend when most of us are with the very people with whom we should be having these tough conversations – our closest friends and family.

Our original mission – to get more and more people talking about their end of life wishes – hasn’t changed. But it’s been quite a year – so we thought this holiday, we’d try something different.

A bit of levity.

At the heart of Engage With Grace are five questions designed to get the conversation started. We’ve included them at the end of this post. They’re not easy questions, but they are important.

To help ease us into these tough questions, and in the spirit of the season, we thought we’d start with five parallel questions that ARE pretty easy to answer:

Silly? Maybe. But it underscores how having a template like this – just five questions in plain, simple language – can deflate some of the complexity, formality and even misnomers that have sometimes surrounded the end-of-life discussion.

So with that, we’ve included the five questions from Engage With Grace below. Think about them, document them, share them.

Over the past year there’s been a lot of discussion around end of life. And we’ve been fortunate to hear a lot of the more uplifting stories, as folks have used these five questions to initiate the conversation.

One man shared how surprised he was to learn that his wife’s preferences were not what he expected. Befitting this holiday, The One Slide now stands sentry on their fridge.

Wishing you and yours a holiday that’s fulfilling in all the right ways.

To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team. If you want to reproduce this post on your blog (or anywhere) you can download a ready-made html version here

End of Life Costs Examined on 60 Minutes

2009-11-23T11:33:00.006-05:00

Yesterday's 60 Minutes program included a segment on the costs associated with dying in America. Dr. Ira Byock, a palliative care physician and former president of the American Academy of Hospice and Palliative Medicine, and Dr. Elliott S. Fisher of the Dartmouth Atlas were featured during the segment. Here is a transcript of the program.

CBS News

Two extra segments also appeared online. In the first segment Dr. Herb Mauer, an oncologist, discusses his decision to enter hospice care.

CBS News

In another web segment his wife, also an oncologist, opines on how she feels our society could improve home care for the dying.

CBS News

Round-up: Awards, Fellowships, and Grants in the News

2009-11-20T14:43:00.001-05:00

Caring Today announced the grand prize winner of it's 2009 "Give a Caregiver a Break" essay contest. Winner Bob Goepfert, of Ballston Lake, NY, writes a beautiful essay about caring for his wife, Carole, who has Amyotrophic Lateral Sclerosis (ALS).

James A. Block, M.D., received the 2009 American Cancer Society Pathfinder in Palliative Care Award. The award recognizes individuals who have demonstrated innovation and ingenuity in their contributions to the advancement of the field of palliative care.

The American Academy of Hospice and Palliative Medicine announced that Timothy E. Quill will receive the Palliative Medicine Community Leadership Award at their annual meeting in March.

The International Palliative Care Leadership Development Initiative, selected 22 palliative care physicians practicing in resource-limited countries to participate in a two-year program to develop their leadership skills.

A new palliative medicine fellowship has begun in Washington state, part of cooperative effort between Providence Hospice of Seattle and the University of Washington School of Medicine.

The Regence Foundation announced a new palliative care grantmaking program in Idaho, Oregon, Utah and Washington, called Sojourns. The program will foster best practices, leadership and collaboration that help people with life-limiting and incurable illnesses access palliative care in their own community.

Brochure Focuses on Improving End-of-Life Care for African Americans

2009-11-19T11:01:00.001-05:00

The USC Davis School of Gerontology and the Partners in Care Foundation have published a brochure to offer information about end-of-life care options to the African American community. The brochure features real-life stories and families' experiences with various programs.

The brochure can be downloaded from the Partners in Care website and health and community-based organizations can order a limited number of print copies for free.

Historically, hospice care has not been a choice for many African Americans. HFA examines this history and suggests ways to reach out to African Americans who are making end-of-life decisions in a special report, African Americans and End-of-Life Care. The DVD of this program is available here. Social workers, nurses and counselors can obtain one continuing education credit through the program.

Focus on Advance Care Planning

2009-11-17T14:29:00.004-05:00

Yesterday, NPR’s All Things Considered looked at the advance care planning practices put in to place at Gundersen Lutheran hospital in La Cross, Wisconsin. Reporter Joseph Shapiro tells the stories of two patients to highlight that the process helps people think through their end-of-life care options well before decisions need to be made. Shapiro also writes about considering his own advance care directive at the hospital.

National Survivors of Suicide Day

2009-11-13T11:02:00.006-05:00

From the American Foundation for Suicide Prevention:

National Survivors of Suicide Day, a day of healing for bereavement after suicide, is Saturday, November 21, 2009. Every year, the American Foundation for Suicide Prevention sponsors this day to provide an opportunity for survivors of suicide loss to come together for support, healing, and information. Because the problem of suicide knows no national or cultural boundaries, survivors from around the world are invited to participate by attending a local conference or by watching the webcast from home.

You are not alone. Please visit www.afsp.org/survivorday to:

1. Locate a local conference site near you.

2. Pre-register to watch the live webcast from a home computer from 1-2:30 pm Eastern Standard Time and then join in a live online chat immediately afterwards, or

3. You can also watch webcasts from previous years at anytime.

Questions? Contact survivingsuicideloss@afsp.org or 1-888-333-2377 x33.

MedPAC Discusses Analysis of Hospice Visit Patterns

2009-11-12T13:39:00.002-05:00

At their November 5 public meeting, MedPAC (Medicare Payment Advisory Commission), discussed an analysis of hospice visit patterns. The data was collected to assist them in making recommendations for changes to the Medicare payment system for hospice services. Previously, MedPAC recommended changing the current flat per diem system of hospice payments to a system that is more U-shaped, allowing for higher payments at the beginning and end of service. You can find the brief and presentation on this page, as well as a link to send MedPAC your comments. (Pallimed has posted some more background here.)

Veterans in Hospice Care

2009-11-10T11:15:00.010-05:00

Hospices across the country care for terminally ill veterans during the final weeks and months of their lives. In honor of Veterans Day, we want to share the story of Cpl. Adam Austin and Staff Sgt. Deuntae Preston, both members of the United States Marine Corps. They serve as volunteers through a unique partnership with Heartland Home Health and Hospice in Kansas City. Stacy Higgins, Volunteer Coordinator at Heartland, matches Marines in the Single Marine Program with veterans in hospice care. HFA featured Cpl. Austin, Staff Sgt. Preston and Ms. Higgins on our Diversity and End-of-Life Care teleconference. (Read the full interview below the video.)

Tell us about your work with the Single Marine Program and Heartland Hospice.

AUSTIN: A big facet of the Single Marine Program is volunteer work. And the hospice just seemed like a very great idea, to deal with veterans. As military members we are people that can actually give something back a lot more to these veterans. Because, these veterans don't talk a lot with their families. A big thing that this program has accomplished so far is actually looking at Marines as more than just a fighting force. We are compassionate people and we are actually able to give back to the community.

What motivated you to become involved in the volunteer program with Heartland Hospice?

PRESTON: I would say what motivated me more or less was my background with the military. My grandfather was in the army. My uncle was in the navy. And I said it could me one day -- it could be a young corporal when I'm ill and they come out to visit me and it's just the right thing to do.

You know these are not only Marines, but Army, you know, sailors who laid their life on the line and just did the right thing from different wars back in the day and it was just the right thing to do.

AUSTIN: My family is not very military oriented. I'm actually the first. But I always loved hearing stories. I loved to know any type of history about anybody. And this is the perfect way for me to actually get to sit down with people and hear so many things that happened back in their time. I love volunteering and this is a perfect opportunity for me.

What have been some of your most meaningful experiences volunteering with fellow veterans?

AUSTIN: I have not found one that really didn’t want to share anything. They've been more than welcoming -- the whole family has been more than welcoming, the veterans and their spouses. I love the stories, the fact that there's still such camaraderie between military services, whether it was Marines, Air Force, Navy, Army. Like that fact when we are on the battlefield -- all that matters is that you all are brothers in a way. I love that.

My most meaningful experience was with one of our veterans -- he was a music lover and just me sitting down and playing the piano just meant the world to him, because that's something he couldn't necessarily do himself anymore. Just to give something as small as that, just to really move him; it got to me, it got to my heart.

PRESTON: My most meaningful experience was with a veteran who didn't really want us to come in the beginning but changed his mind. And we get there and the conversation was wonderful. He was upbeat. He had a lot to talk about and he didn't want us to leave. And it just left me with a smile on my face knowing that in the beginning he didn't want us to be there. We came, we had a nice conversation, enjoyed his company and it just meant a lot to me and I saw that it meant a lot to him as a veteran.

What have been some of the more difficult experiences for you?

AUSTIN: Some veterans, you know, they’ve had to go through a lot and they don't want to deal with a lot of it anymore.

I remember one; he actually just grabbed right a hold of me and said I just don't want to have to deal with this anymore. I don't want to -- I really don't want to necessarily deal with life. And I told him, “Well, you know, you're still here for a reason. I think you're still here for a reason, sir.”

PRESTON: I would say it's difficult and it's easy. It's difficult in that you don't know what you're getting into. It's easy in the mind set where when you get there, you're learning from veterans, their different experiences, their background. So, you know, it's difficult and easy at the same time.

What about being a Marine has helped you to work with fellow veterans facing the end of life?

PRESTON: I would say mainly as a Marine, we have to know -- you know, to deal with any type of death and dying; and just being able to cope with stuff like that, it does make it a little easier to be able to talk with the veterans.

AUSTIN: What I take from this program is hope, hope that when I am much older and I'm a veteran -- that a program like this will still be around, in which I can share my stories.

I think the biggest thing with this partnership is really getting to give back to these veterans that have already done so much, for how they've already served their country.

And the fact that we can at least show them that yes, you are here, you're still part of that brotherhood. You still mean so much to us as present day military.

National Veterans Day, November 11, 2009

November 2009 Palliative Care Grand Rounds

2009-11-09T11:24:00.001-05:00

The November 2009 edition of Palliative Care Grand Rounds, a "monthly blog carnival" highlighting blog posts related to hospice and palliative care, is up at the Pallimed Arts & Humanities blog.

Celebrate Hospice This November

2009-11-02T15:06:00.002-05:00

November is National Hospice Month, a month to recognize the invaluable work that hospices do each day, to educate consumers about the benefits of hospice, and to honor those who cope with caregiving and end-of-life issues in their own lives.

Learn more about hospice care and how hospices serve patients with life-limited illnesses and their families.

CMS Updates Medicare Hospice Statistics

2009-11-02T09:41:00.002-05:00

The Centers for Medicare & Medicaid Services (CMS) is providing updated hospice statistics from 1998 to 2008. The statistics include the 20 most frequent diagnoses, the number of patients, average length of stay, and trends over time in length of stay, by diagnosis.

From the data trends report:

Hospice Terminal Diagnoses

The table also shows that the frequency of some hospice terminal diagnoses has changed over time, with relatively fewer cancer patients and relatively more non-cancer patients as a percentage of total hospice patients. The percentage of all Medicare hospice patients with a terminal diagnosis of cancer dropped from 52.8% in 1998 to 31.1% in 2008 [data not shown]. Lung cancer has been recognized as the most common diagnosis among Medicare hospice patients every year since 1998. However, in 2006 non-Alzheimer’s dementia became the most common diagnosis among Medicare hospice patients. The percentage of Medicare hospice patients with lung cancer dropped from 16% in 1998 to 9% in 2008. In addition, we are seeing a notable increase in the number of neurologically-based diagnoses. We are also seeing a marked increase in non-specific diagnoses such as “Debility, Not Otherwise Specified”, and “Adult Failure to Thrive”.

Average Length of Stay

Along with the shift in the mix of hospice patients, there exists a significant increase in the average length of stay (LOS) for hospice patients. In 1998, the average LOS for hospice patients was 48 days, but by 2006 it had risen to 73 days (a 52% increase). Since 2006, the average LOS has begun to decline slightly, dropping to 71 days in 2008, which is a 48% increase from 1998. Charts 1 and 2 show that the average LOS varies by diagnosis. For the top twenty diagnoses in 2008, the average LOS ranged from 28 days for chronic kidney disease to 105 days for Alzheimer’s disease and other degenerative conditions. While the average LOS from 1998–2008 for hospice patients with diagnoses such as chronic kidney disease or cancers has remained relatively stable, the average LOS rose significantly for most other diagnoses, thought it has recently begun to decline slightly. Charts 1 and 2 graphically demonstrate the difference in the changes in lengths of stay for cancers versus other diagnoses in the top 20 list.

Dia de los Muertos: Memorializing Loved Ones

2009-10-30T11:03:00.004-04:00

Dia de los Muertos, or the Day of the Dead, is an ancient Central American holiday that memorializes loved ones who have died. The tradition is over 3,000 years old and is still observed by many inhabitants of Mexico, Central America, and, increasingly, worldwide.

When the Spanish colonialists arrived on this continent, they tried, unsuccessfully, to stamp out Dia de los Muertos, because they found the rituals to be bizarre and possibly blasphemous. When they realized they could not stop the holiday, they decided to move the date from August to the beginning of November in order to coincide with All Saints Day and All Soul Days—holidays officially sanctioned by the Catholic Church.

One primary difference between Dia de los Muertos and All Souls Day is the fundamental attitude towards death. With solemnity and reverence, All Souls Day observances tend to focus on what has been lost by the living. The tone of Dia de los Muertos, however, assumes continuity between life and the afterlife. With Dia de los Muertos, death is rather a new beginning—a rebirth.

Celebrants in more rural locations throughout Mexico observe by visiting the cemetery where their loved ones are buried. They clean the site of the grave, decorate it with candles and flowers, and bring gifts for their loved ones.

In today’s American Southwest, most second and third generation immigrants are not familiar with Dia de los Muertos and could find its attitude toward death—both festive and mocking—to be foreign. Some recent immigrants, however, still observe the holiday.

One of the primary crafts is the sugar skull. Molded from damp sugar, dried, and decorated with frosting, the sugar skulls are a key feature of any Dia de los Muertos celebration. The skulls are often placed on altars created by family members.

In the urban parts of Mexico and in the US, celebrants forego the cemetery celebrations and participate in rituals in their homes. They often create altars to commemorate the dead. Flowers, food, candles, sugar skulls, and pictures are used to honor the memory of the dead. It is believed by some that the spirits of the deceased travel the celestial plane to visit earth during Dia de los Muertos. The food is often left out for sustenance for the nonliving after the long voyage home. Like Santa Clause, the dead are said to consume the food, at least in part, while everyone sleeps.

Dia de los Muertos is now celebrated by more than just indigenous Central Americans. In the US, African-Americans, Native Americans, students, and artists have discovered the helpful role of the holiday.

Some find the light-hearted, mocking attitude a bit odd or threatening. In reality, however, the utmost respect is showed towards the dead.

Dia de los Muertos celebrations occur in Latin American countries besides Mexico. It is a recognized holiday in Brazil. Celebrations also take place in Guatemala, Haiti, the Philippines, and parts of Europe and Asia.

Joan Serber works for Hospice Brazos Valley in central Texas. She has been working for several years to revive the tradition in her area. Her initial efforts weren’t in a hospice setting, however. She worked with area artists and galleries to feature Dia de los Muertos art and crafts.

The best introduction to the holiday, according to Serber, is The Skeleton at the Feast: The Day of the Dead in Mexico by Elizabeth Carmichael and Chloë Sayer.

The tradition has been further melded with the Christian tradition in that crosses or statues of Jesus Christ or the Virgin Mary are often found on altars along with traditional items.

According to Serber, Hospice Brazos County created an altar for their therapy dog after his death. The staff and patients appreciated the reverent, if not quite solemn, displays.

As the Hispanic population rises throughout all parts of the United States, Dia de los Muertos will be an increasingly important holiday. Those who work in hospice programs that serve large immigrant populations should be knowledgeable of the holiday and prepared to help their grief clients observe its traditions, if so desired.

Keith Johnson, HFA
originally posted Oct 29, 2008

Dementia and the End of Life

2009-10-23T12:41:00.002-04:00

A study appearing in The New England Journal of Medicine suggests improving palliative care for advanced dementia patients. Researchers, led by Dr. Susan Mitchell of Harvard Medical School,studied 323 nurshing home residents around Boston and found that although most patients primary care goal was stated as comfort care, over 40 percent received at least one medical intervention in the last three months of life.

Tara Parker-Pope at The New York Times also reported on the study:

Dementia is often viewed as a disease of the mind, an illness that erases treasured memories but leaves the body intact.

But dementia is a physical illness, too — a progressive, terminal disease that shuts down the body as it attacks the brain. Although the early stages can last for years, the life expectancy of a patient with advanced dementia is similar to that of a patient with advanced cancer.

The lack of understanding about the physical toll of dementia means that many patients near the end of life are subjected to aggressive treatments that would never be considered with another terminal illness. People with advanced dementia are often given dialysis and put on ventilators; they may even get preventive care that cannot possibly help them, like colonoscopies and drugs for osteoporosis or high cholesterol.

“You can go to an intensive-care unit in most places,” said Dr. Greg A. Sachs, chief of general internal medicine and geriatrics at Indiana University School of Medicine, “and you’ll find people with dementia getting very aggressive treatment.”

Palliative Care Institute in Buffalo Established

2009-10-23T12:39:00.001-04:00

The Buffalo News reports that three organizations, The University at Buffalo, Veterans Affairs Medical Center, and the Center for Hospice & Palliative Care, joined to open a new Palliative Care Institute in Buffalo, NY. Among the institute's goals is replicating a program at the University of Buffalo's medical school that partners with a hospice to train specialists in palliative care. The institute plans to initiate training programs in the university's nursing and social work schools as well. Only 17 medical schools in the United States currently have such a program, according to the article.

More Research into the End-of-Life Care Received by African Americans

2009-10-20T13:39:00.004-04:00

In a follow-up study to research released last year, researchers from Dana-Farber Cancer Institute observed that cancer patients’ treatment preferences were less likely to be observed if they were black, rather than white.

"End-of-life care discussions appeared to be more effective in ensuring that white patients' treatment preferences were honored," said Holly Prigerson, PhD, senior author of the report in The Journal of Clinical Oncology. The study is posted on the journal's web site and will be published in a future print edition.

"We are not saying that black treatment preferences were ignored," she emphasized. "Black patients did want, and did receive, more aggressive care than whites. The disparity was in the effect of treatment preferences on care received not that black preferences didn't matter."

. . .

"None of the white patients who reported the completion of a do-not-resuscitate order, or a DNR, order at baseline subsequently received intensive care in the last week of life," said Prigerson. "This did not prove to be the case for black patients. DNR orders did not significantly protect black patients from intensive end-of-life care in this study."

She said the black-white disparity in adherence to advance directives may be linked to gaps in communication, some of which resulted from discontinuities in care that may have been more prevalent in the treatment of black patients.

For example, the researchers identified a few instances where DNR orders completed for black patients fell through the cracks because their informal caregivers (friend or family member) changed over the course of their illness, or because a critically ill patient was treated at a different hospital from the one that normally provided their care.

HFA’s 2009 Initiative is focused on Diversity and End-of-Life Care. As part of that initiative, HFA produced a DVD, African Americans and End-of-Life Care, which examines African-American attitudes about care at the end of life; offers explanations as to why hospice, historically, has not been a choice for many African Americans; looks at grief and the African-American community; and suggests ways to reach out to African Americans who are making end-of-life decisions. The program is available for purchase hereand one Continuing Education credit is available for social workers, nurses, counselors, for an additional small fee.

Hospice Care in Prisons

2009-10-20T13:38:00.001-04:00

Saturday’s New York Times included an article about hospice care in the nation’s prisons. Many programs use prisons as hospice volunteers to provide companionship at the end of life. The article focuses on how the experience can be transformative for the volunteers involved.

Grief, Holidays, and Family Dynamics

2009-10-15T13:08:00.004-04:00

Monday, November 16, 1pm-2pm ET

Dealing with the complex relationships in a family facing grief can be challenging. Facing loss during the holidays often is very difficult. The additional stress may have an impact emotionally, cognitively, and physically, and it is important for professionals to help grieving people be prepared for these feelings.

The Hospice Foundation of America will offer a webinar offering advice and practical assistance for helping grieving persons during the holidays. Some may be grieving a death, while others may be anticipating the impending death of a loved one, knowing the holidays are approaching. And while this is the “season” of important holidays for many, holidays occur throughout the year that can generate grief such as Mother’s Day and Father’s Day, or summer holidays that were reserved for special family reunions.

In this program for professionals and consumers, Dr. Ken Doka and Dr. Sherry Schachter will discuss:

How bereavement professionals and other providers can help grieving families think ahead about how their holidays may be different and difficult, and help them plan to cope more effectively
Give three principles to help grieving people cope with the holidays
Note two things to avoid as one faces the holidays
Offer strategies to help grieving children during the holidays
Describe programs and rituals that organizations can use to assist grieving families during the holiday season

Continuing Education Available for Professionals!

A valuable educational offering for individuals or organizations, with CEs included--in an easy-to-access on-line format! One hour of continuing education is available for social workers, nurses and counselors. See a complete list of board approvals.

Learn more about the program, including technical requirements, or register online now.

PBS to Explore End-of-Life Care Discussions Tonight

2009-10-09T11:55:00.002-04:00

PBS’ Now program, airing on most stations this evening, will focus on end-of-life care discussions at Gundersen Lutheran Hospital in Wisconsin. After the broadcast, video will be made available on the PBS website.

How did private discussions between seniors and their doctors about end-of-life choices for the very ill or dying become a flash point in the national health care debate?

This week, NOW travels to Wisconsin to sit in on some of these sessions and see how health care reform could profoundly affect the lives of American seniors.

The not-for-profit Gundersen Lutheran Hospital has two decades of experience in this area. Their "Respecting Choices" initiative has become one of the most comprehensive end-of-life planning programs in the country.

Two families grappling with the most difficult and complex life and death issues gave NOW on PBS extraordinary access to their discussions and their decisions.

October 2009 Palliative Care Grand Rounds

2009-10-08T11:20:00.000-04:00

The October 2009 edition of Palliative Care Grand Rounds, a "monthly blog carnival" highlighting blog posts related to hospice and palliative care, is up at GeriPal, a Geriatrics and Palliative Care blog.