Highlighting Hospice during Black History Month

In honor of Black History Month, the Milwaukee Courier published this list of prominent African Americans who receive hospice care, written by Clarene Mitchell, Community Liaison for VITAS Innovative Hospice Care.

On a national level, only 8 percent of hospice users are African American. Yet, with the disproportionately higher African American mortality rates, many more could benefit from the end-of-life care. There are various reasons that contribute to the racial health disparity; some of which includes African Americans either not knowing enough about hospice and/or believing that it is only available to other populations. In contrast to this, there are many prominent and accomplished African Americans who have benefited from hospice care as they transitioned into death.

Gloria Thomas Anderson, MSW, wrote a booklet, The African American Spiritual and Ethical Guide to End of Life Care, that addresses some concerns African Americans may have about hospice care. The booklet is being used by Kansas City Hospice as part of their outreach efforts. HFA interviewed Ms. Anderson and Jeannette Ford, Kansas City Hospice's Director of Community Relations.

HFA examined why hospice is under-utilized by African Americans in this special report produced last year. The report looks at 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.

End-of-Life Care In and Out of Prison

Researchers from Penn State University and employees from six Pennsylvania prisons and the state's Department of Corrections will be examining end-of-life care options for prisoners. The research is being funded by a $1.27-million grant from the National Institute of Nursing Research. An intervention toolkit will be developed as part of the project, to be used at prisons across the United States.

Prison workers, including health care professionals, chaplains, prison society volunteers and corrections officers, will provide information on current limitations, strengths, existing perceptions of end-of-life care among prison stakeholders and areas of care that bear improvement. Using the data collected, researchers will create a set of educational strategies for use by prison staff that they can tailor to fit individual prison's needs.

Researchers selected Pennsylvania prisons that represent the diversity of those nationwide. They include varying levels of racial/ethnic concentrations and range from minimum- to maximum-security facilities. Included are prisons for male and female inmates. The study also includes a prison with an oncology unit, a prison that holds a primarily geriatric population, two prisons that house inmates facing death penalties and a prison that has a mental health unit.

New York state and many other states allow for compassionate release of terminally ill prisoners, reports the New York Times. However, few prisoners are actually released under these types of laws.

The embrace of compassionate release comes as the nation’s prison population is at a historic high — 1.6 million people as of 2008, according to the Justice Department — compounded by a surge in aging and sick inmates serving longer sentences. In 2008, there were 74,100 inmates age 55 and older, a 79 percent increase from 1999. New York estimates the cost of caring for a gravely ill inmate at $150,809 a year.

Once released, they are usually cared for by family members or placed in nursing homes or hospices, their expenses largely covered by Medicare or Medicaid.

But while the new state guidelines led to a rise in applications for medical parole — 202 inmates last year, compared with 66 in 2008 — they have hardly led to more releases.

February 2010 Palliative Care Grand Rounds

The second edition of Palliative Care Grand Rounds for 2010, a "monthly blog carnival" highlighting blog posts related to hospice and palliative care, is up at the Alive Hospice blog.

FDA Approves Morphine Sulfate Oral Solution

Last spring the U.S. Food and Drug Administration initially banned, then allowed a form of liquid morphine (20 mg/ml morphine sulfate solution). Now it has released an official approval:

The U.S. Food and Drug Administration approved Morphine Sulfate Oral Solution for the relief of moderate to severe, acute and chronic pain in opioid-tolerant patients. This medicine will be available in 100 milligrams per 5 mL or 20 milligrams per 1 mL.

This is the only FDA approved morphine sulfate oral solution available at this concentration. Although the use of this medicine to manage pain has been common practice for many years, this form and concentration of morphine was not FDA approved until now.

Hospice organizations and hospice professionals expressed concern about limiting these forms of morphine, and those concerns were heard by the FDA. View other posts about this change at the Center to Advance Palliative Care, and the GeriPal and Pallimed blogs.)

Changes to Medicare Hospice Claim Form

The Centers for Medicare & Medicaid Services (CMS) recently issued CR6791 which requires hospice agencies to report a separate line item for each time the levelof care changes.

For hospice claimssubmitted on or after April 29, 2010, hospices should report separate line itemsfor the level of care each time the level of care changes. This includes revenuecodes 0651 (Routine Home Care), 0655 (Inpatient Respite Care) and 0656 (General Inpatient Care).

Read the complete release on the CMS website.

Arizona Stops Funding for Some Medicaid Hospice Services

The Arizona Daily Star reported yesterday that the state's Medicaid program (known as the Arizona Health Care Cost Containment System) no longer funds hospice services for some Medicaid patients. Patients enrolled in the long-term care program will continue to receive hospice benefits, however. The article reports that the 541 patients who received care under the program last year would not be eligible today.

State legislators, in an attempt to balance the budget, have cut care options for some terminally ill Arizonans, and hospices may have to repay the state for services already provided.

A footnote in the Legislature's 2007 General Appropriation Act allowed the Arizona Health Care Cost Containment System to match federal funds for hospice services needed by acute-care patients. It was a one-year appropriation that was renewed in 2008, but not for the fiscal year that began on July 1, 2009. Even though legislators approved the budget in July, AHCCCS continued authorizing hospice payments for another six months.

Last month, AHCCCS sent a letter to providers telling them that the funding had been eliminated, and it suggested they would have to repay the state.

Sharing Stories: Cancer and End-of-Life Care

In HFA's upcoming teleconference, you'll meet a variety of people dealing with cancer and end-of-life care. Below are excerpts from three individuals - two professionals who encounter cancer on a daily basis, and a daughter who describes her family's experience following her mother's cancer diagnosis. Their lives and stories are extraordinary and give you an idea of the depth of this year's March 24 program.

Shelda Smith is a medical social worker with Calvary Hospital and Hospice in Bronx, NY. She talks about the emotional components of her work.

Being hospice clinicians, [we] carry the grief of a lot of whole families on our shoulders. And one of the most difficult things is balancing that emotional piece of working with those families with your own personal life and your own sense of well-being. The toughest cases for me have been the cases where I've met women who are about my age and have children about the age of my children. And it certainly mirrors my own mortality. I feel vulnerable and that's difficult. It's often very difficult to... think you're invincible with this job. We enter into somebody's emotional world and we come out of it feeling a lot of those emotions. I try to put myself in a place where I do feel it, and I could empathize with it, and I don't run away from it. I think it's important even for patients to know that you're there, that you are where they are and they can sense it. And for me, I think it's probably my best skill -- being able to be where patients are, and really letting them know that I understand what they're going through. But then you have to find a way to come out of that house and be able to leave that behind.

Jennifer Alkhayat is a nurse practitioner with Capital Palliative Care Consultants, which is based in Northern Virginia and affiliated with Capital Hospice.

Capital Hospice had a great medical team and realized that there was a huge part of the population that was not being able to benefit from the hospice services, but could still benefit from the knowledge and education that all of our medical professionals had. So we thought it would be a good idea to get out and into the community, and be able to offer these services to those who were not quite ready for hospice yet. The types of patients that we see are generally patients with life-limiting illness, who have symptoms that may be out of control while they are pursuing other types of aggressive treatments, whether that be chemotherapy, dialysis, any of those things. When you have a disease like this, they usually go hand in hand with symptoms -- you're usually not well-managed at that point, because a lot of times people think that this is part of the illness, and they need to go through that part. What we try to do is educate them, let them know that they don't have to suffer, that they can continue to get the treatment that they want to pursue, but at the same time have the quality of life that they would like to live. The type of symptoms that Capital Palliative Care assists in managing are pain, shortness of breath, fatigue, anxiety, constipation, diarrhea, any -- any adverse effects that you may be getting from aggressive treatment or from the disease itself.

The special role that we have is, especially when Capital Palliative Care gets involved early in someone's cancer diagnosis, is being able to take that journey with them, to make sure that they are comfortable, to make sure that they have the energy, to make sure that they have the support to continue with these treatments that can be quite burdensome to many people. Many people really hold on to these treatments as kind of their lifeline, and don't want to let go.

Sherry Meyers of Great Falls, VA, is one of three siblings and talks about her mother's cancer diagnosis and her family's experience with hospice care.

We learned about mom having lung cancer five years ago, so that would be 2005. It was St. Patrick's Day. It was very unexpected, although she was a smoker for a number of years. We weren't shocked that she had lung cancer, but were surprised that it had taken so long to catch up to her. So we were advised by her general practitioner to see a series of oncologists and to bring in hospice right away because she was 83 at the time. So we had no idea how long she would live or how far it had progressed. I am the youngest of three children, but I am kind of the main caregiver of my family, and so I was the one that had to contact the hospice and brought them in soon after she was diagnosed.

[Mom] was very apprehensive about it at the beginning because she thought if I have hospice, then I'm going to die tomorrow, which was what a lot of my brother was focusing on. She eventually came to accept it and she lived for a year and a half with the lung cancer, so we were involved with hospice for a year and a half. [Hospice] was absolutely incredible. We had a very good experience with them. When they first came with us, the hospice nurse and social worker took us through all that they would be doing. My sister was very for it. My brother, as I said, was a little apprehensive in the beginning, just because he thought it was too soon to bring hospice in. He realized shortly thereafter that it was a great decision because they brought a calming influence to a very difficult situation.

Bereavement Camps for Kids Webinar on February 1st

Today is the last day to register for HFA's Bereavement Camps for Kids: Benefits and Challenges Live Webinar (Monday, February 1, 1:00pm-2:30pm ET.) This webinar is part of our Grieving Children and Adolescents series. If you can't make Monday's live webinar, you can still register for the series and view the first webinar on-demand once it is archived.

HFA's live online webinar series includes:

Bereavement Camps for Kids: Benefits and Challenges on Monday, February 1. Panelists will include: 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.

Bereaved Children and Adolescents: Lessons from Research on Wednesday, April 14. Panelists will include J. William Worden, Lead Researcher for the Harvard Child Bereavement Study and Irwin N. Sandler, Regent's Professor of Psychology, Arizona State University.

Grieving Children and Adolescents: The Role of Internet Support on Tuesday, June 15. Panelists will include Pamela Gabbay of the Mourning Star Center and National Alliance of Grieving Children and Cendra Lynn, founder of GriefNet and KidsAid.com.

Register for the series here. The Organization Registration Fee for the three-part series is $250, which allows access to both the live webcast and an archived online program for one year past the live webinar, with unlimited complimentary CEs (1.5 hours) available for a wide range of professions. If purchased separately, the Organization Fee is $100 per program. Individuals may register for each webinar for $35 and 1.5 hours of CE credit is included for the registered individual. To learn more, contact HFA at 800-854-3402 or see the website.

Los Angeles Times Focuses on End-of-Life Care

The Los Angeles Times is featuring a few articles on hospice and end-of-life care. First, Lisa Zamosky wrote about the choices patients face at the end of life, referencing several recent studies that looked at the cost and quality of various end-of-life care options.

"People may think that the more money spent on their healthcare, the better care and quality of life purchased. At the end of life, it doesn't work that way," says Holly G. Prigerson, director of the Center for Psycho-oncology and Palliative Care Research at the Dana-Farber Cancer Institute at Harvard Medical School. She was one of the authors on an end-of-life care study published last year in the Archives of Internal Medicine. "In fact, we found the opposite to be true. We found that most of the costs of end-of-life care pay for burdensome, non-curative care that offers no substantial survival advantage."

That study showed that cancer patients who planned in advance with their doctors about end-of-life treatment had much lower healthcare costs in their final week of life than those who didn't. What's more, the higher the cost of medical care, they found, the worse the patient's quality of life was in the final week of life.

Christie Aschwanden offers a basic review of hospice, including who is eligible and what to expect. (For more information on hospice, see HFA's What is Hospice? section.)

When and how to have the discussion: Family members and terminally ill patients often struggle to initiate discussions about death, and this can result in a conspiracy of silence that can delay hospice care, Whitney says. "Very often the patient says to me, 'I know I'm dying, but please don't tell my wife.' And then I'll talk to the wife and she'll say, 'I know my husband is dying, but please don't tell him.' "

Because doctors too may be reluctant to suggest hospice, it's often up to the patient or family to ask. If needed, hospice staff can call the doctor to help initiate the discussion.

Today, Jill U. Adams discusses a study from the journal Cancer that we posted earlier this month.

Here's a closer look at why end-of-life discussions are important.

If done sensitively and as part of ongoing medical care, discussing whether to resuscitate, when to seek hospice care and where patients want to spend the last days of their lives can actually empower patients, rather than making patients lose hope, say Keating and other palliative care experts. Instead, the talks help patients gain some control over treatment and over the final stage of their lives.

"My own view about this is that the whole approach to dying is really an approach to living," says Dr. Katherine Kahn, a UCLA physician and co-author of the new study. "The more we can make these discussions about end of life part of a larger set of discussions with patients about how they approach medical care and how they approach life, the better we can honor their medical wishes when it comes time."

To do this, patients and doctors need to accept the facts, says Dr. Michael Levy, an oncologist at Fox Chase Cancer Center in Philadelphia. He chaired the panel that crafted the cancer network guidelines.

Only 15% of patients with Stage 4 cancer have a viable chance at a cure, he says, and even in those patients, only 50% are cured. "That means that 92.5% of patients with advanced disease will die of their cancer," Levy says. "So you've got to just talk about it."

In the column, In Practice, Mark Morocco, an associate professor and associate residency director of emergency medicine at UCLA Medical Center, writes about his difficulty discussing end-of-life care with a particular patient when he was a medical student.

I was the "sub-intern" -- a few months from graduation -- so when Mr. Martinez exasperated the last of the "real" doctors, they passed the hot potato, and the responsibility for his end-of-life care, to me. With the latest academic ideas on hospice care still fresh in my mind, I knew exactly what to do. I would control his pain aggressively and arrange for care in some place where he could "die with dignity." If only I could get him on board with this plan, my job would be easy.

Obvious Lesson No. 1 in medical school, however, is that there is nothing easy about "treating" death and nothing simple about making plans for it. Armed with miracle machines and genetically built drugs, doctors promptly forget this lesson in our focus to save our patients or to at least let them live another day. Yet death waits for all of us, and, like Mr. Martinez, we usually just don't want to talk about it. "What's to talk about?" he'd yell at me. "Go away!"

Awards and Tributes Spotlight Hospice and Palliative Providers

• Hastings Center Cunniff-Dixon Physician Award Recipients
  
  Robert A. Milch, MD, FACS, a surgeon who helped found Hospice Buffalo, won the established physician award for leadership in end-of-life care. Three other physicians will receive early career awards, Elisabeth Potts Dellon, MD, MPH, of the University of North Carolina; Jeffrey N. Stoneberg, DO, of San Diego Hospice and The Institute for Palliative Medicine; and Eytan Szmuilowicz, MD, of Northwestern Medical Center in Chicago.
  
  Jeffrey N. Stoneberg, DO, mentioned above, was featured on San Diego University's KPBS station.
  
  
• 2010 End-of-Life Nursing Education Consortium (ELNEC) Award from the American Association of Colleges of Nursing (AACN)
  
  Madeline Lambrecht, professor in the School of Nursing at the University of Delaware received this award.
  
  

• The Hospice and Palliative Nurses Association is honoring nurses with a Memorial Photo Tribute. Learn more.

  To help celebrate the 2010 International Year of the Nurse (2010 IYNurse), HPNA has a very unique opportunity for its members to commemorate the invaluable contributions of their nursing colleagues who have died. The National Office will collect their names and photos to launch the HPNA Photo Memorial Tribute to Nursing Colleagues.
  
  We invite you to send a photo and brief description of the colleague you wish to memorialize. This special person can be a nursing mentor, past nursing co-worker, national nursing leader, or a nurse in your life who has passed away.