Veterans in Hospice Care

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.

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National Veterans Day, November 11, 2009

November 2009 Palliative Care Grand Rounds

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

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

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

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

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

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

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

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

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.