New Standards of Practice for Pediatric Palliative Care and Hospice Released

As part of the National Hospice and Palliative Care Organization's (NHPCO) annual leadership conference, the organization released new Standards of Practice for Pediatric Palliative Care and Hospice. The standards were developed by NHPCO and members of the Children’s Project for Palliative/Hospice Services, and aim "to help hospice and palliative care providers develop safe, effective, and high-quality programming for children and their families facing serious and life-limiting illness. NHPCO also released facts and figures on pediatric palliative and hospice care in America.

Interpretation and Translation Services Not Always Utilized

Friday's Doctor and Patient column from The New York Times discussed a small study from the Journal of General Internal Medicine showing doctors were consciously deciding not to use interpretation services available at their hospitals.

Dr. Alicia Fernandez and colleagues at the University of California, San Francisco, and at Yale University examined language barriers between patients and doctors at two teaching hospitals with excellent interpreter services. The investigators interviewed 20 residents, young doctors recently graduated from medical school who make up the clinical frontline at these two urban medical centers.

A complex picture emerged from the interviews. While the doctors acknowledged that they were underutilizing professional interpreters, many made the decision not to call an interpreter consciously, weighing the perceived value of patient information against their own time constraints. Moreover, despite their personal misgivings, the doctors often felt that this kind of shortcut was acceptable and well within the norms of their professional environment.

Also see readers' comments here.

Reframing End-of-Life Discussions between Doctors and Families

This post from an anonymous hospice doctor blog talks about reframing the discussion with a patient's loved ones when there is disagreement as to the course of care. Here the doctor talks with a patient's daughter:

She did seem to accept that her mother was gravely ill, but she was unsure about the dying part. She felt that a terminal prognosis would mean her mother would stop receiving care and basically just be left alone to die. And she had an issue with the staff accepting her mother's word for it. "Look," she said, "if a person has a bad stomach ache, he might say 'I want to die, I want to die,' but it's because of the pain. He doesn't really want to die."

As I listened to Lila's comment, I felt she had a legitimate point. How many of us have said the word die in just the way she described? But I also sensed an opening, a way to reframe the discussion. "You may be right," I replied. "Perhaps when your mother says, 'I want to die,' she's really saying, 'I want you to relieve my pain and suffering above all, and beyond that I'll let things unfold on their own.'" I said that we could actually do that -- treat her pain without making her unconscious, and support both daughters and their mother no matter what happened. I didn't talk about dying. I talked about living without suffering for however long she would live.

Advice for Finding Caregiving Support

Carol O'Dell of the Mothering Mother blog writes about how caregivers can find and give support in this post, "Caregivers, Find Your Tribe, The Power of the Caregiving Community." She urges caregivers to find others in similar circumstances, here at a meeting of families members of people with Parkinson's:

And I’ll encourage them to look around–at their “peop’s.” This room is their tribe. There’s someone here they could email or call. There’s someone here who knows a thing or two about their particular current issue–and how we help each other at our points of need.

That’s the power of community. As isolating as caregiving is, it also makes us vulnerable–and that’s a good thing. We meet, come to gether only where our lives intersect.

I know how tired you are. I know you don’t consider yourself good company.

But you need people–and they need you. You can start giving back now (what, you didn’t realize this was part of the bargain?) There are new caregivers every day. They’re your neighbors, your cousins, your friends, and they need your wisdom, advice, and your “here’s what not to do” list. When life presents you an opportunity (and it will), I hope your ears will perk up and you’ll remember this blog, and you’ll know it’s time.

Finding your tribe means you are willing to step into the circle.

Pilot Project Supporting Hospice Caregivers

A pilot project based at the University of Colorado Denver Department of Psychology and the University of Colorado School of Medicine is being run to see if a telephone-based support program for family caregivers of hospice patients can improve their psychological care. The project is being funded by American Cancer Society, the National Institute on Aging, and the National Cancer Institute.

Support calls focus on self-care, coping with stress, physical symptoms, social support, grief and bereavement, and spiritual issues. Seven hospices are participating in the initial project: San Diego Hospice & Palliative Care (San Diego, CA), Rice Hospice (Willmar, MN), Hospice of Michigan (Detroit, MI), Hospice of Saint John (Lakewood, CO), Capital Hospice (Falls Church, VA), Hospice of Montezuma (Cortez, CO), and Hospice of the Roaring Fork (Glenwood Springs, CO).

New Care Transitions Pilot Project Announced by CMS

The Centers for Medicare & Medicaid Services (CMS) has announced a new pilot program, the Care Transitions Project, designed to minimize hospital readmissions.

“Our data show that nearly one in five patients who leave the hospital today will be re-admitted within the next month, and that more than three-quarters of these re-admissions are potentially preventable,” said CMS Acting Administrator Charlene Frizzera. “This situation can be changed by approaching health care quality from a community-wide perspective, and focusing on how all of the members of an area’s health care team can better work together in the best interests of their shared patient population.”

The goal of the Care Transitions Project is to improve health care processes so that patients, their caregivers, and their entire team of providers have what they need to keep patients from returning to the hospital for ongoing care needs. By promoting seamless transitions from the hospital to home, skilled nursing care, or home health care, this community-wide approach seeks, not only to reduce hospital readmissions but to yield sustainable and replicable strategies that achieve high-value health care for Medicare beneficiaries.

The New England Journal of Medicine recently published a study showing that many hospital readmissions could be prevented with improved follow-up care.

Sharing Experiences As Volunteer Week Nears End

A hospice volunteer with Willamette Valley Hospice shares the joy she finds in her with in this editorial from Oregon's Statesman Journal.

Before I became involved with hospice, I was not aware of the incredible amount of time that hospice volunteers dedicate to selfless support and care for patients and their families. More than 400,000 volunteers provide millions of hours of service through our nation's hospices every year. More than 1.4 million people received compassionate care from hospice last year and its volunteers serve as an integral part of the care team. Everyone involved demonstrates their selfless attitude, greatly affecting the lives of others with their small actions of comfort and kindness.

Serving as a hospice volunteer allows me to make sure that the people I care for and their families find hope within each day, have their dignity preserved and are surrounded by love even in the final moments of life.

Also read this story from a volunteer at Alive Hospice Residence Nashville.

Listening – that’s what we all do the most of here. Oh, and caring enough to get out of our comfort zones and then finding out that we now have a new comfort zone. We assist patients with writing thank-you’s and then sometimes we help them write letters of good-bye. We cry, we laugh, we listen some more and we may laugh and cry all over again. Sometimes we order pizza and have girls’ nights in, bring in patients’ beloved pets, watch movies, water plants, take a patient for a walk or ride around the Residence, play music, or paint nails.

Hospice volunteers, thank you for the wonderful service you provide to patients and their families!

Advanced Directives and End of Life Care

Missouri's Columbia Daily Tribune featured an article about a proposal to increase the use of advance directives in the state.

A new proposal might encourage more Missourians to have that talk. Lt. Gov. Peter Kinder plans this summer to roll out a plan similar to the program at Gundersen Lutheran Hospital in La Crosse, Wis., where more than 90 percent of the patients have signed advance directives. Advocates say results include less expensive and more satisfying end-of life care.

Bud Hammes, director of the Respecting Choices training program at Gundersen Lutheran, said the end-of-life care model began in 1986 with dialysis patients, who are at high risk for strokes that can severely impair motor skills and brain function. Hammes kept having the same difficult discussions with family members in case after case about whether the loved one would like to continue receiving dialysis to prolong his or her life.

“I repeatedly got this look of despair and the response of, ‘If I only knew,’ ” he recalled.Hammes said he was surpised that dialysis patients were visiting the hospital three times weekly for hours at a time and no one bothered to ask what type of care they’d like should they become incapacitated.

Over the years, advance care directives have become a communitywide passion in La Crosse. The discussion is built into the hospital’s admissions process. From primary care doctors to emergency rooms, patients are given the opportunity to make end-of-life plans. At Gundersen Lutheran, advance directives are part of a patient’s electronic medical records, viewable by medical care personnel from paramedics to the bedside nurse.

Paula Span ponders the reasons why more people do not have advanced directives at The New Old Age Blog.

Recent Hospice and Palliative Medicine Studies Discussed

The "State of the Science" presentation from the recent American Academy of Hospice and Palliative Medicine (AAHPM) and Hospice and Palliative Nurses Association (HPNA) annual assembly is now available on the association's website, including the audio presentation and handout.

The presentation summarized eight peer-reviewed articles from 2008, selecting those with the "highest potential impact upon the field of hospice and palliative medicine."

Papers discussed included:

• Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment


• Patient-Oncologist Communication in Advanced Cancer: Predictors of Patient Perception of Prognosis


• QTc Interval Screening in Methadone Treatment


• Methylnaltrexone for opioid-induced constipation in advanced illness


• Recovery of Activities of Daily Living in Older Patients After Hospitalization for Acute Medical Illness


• Massage Therapy versus Simple Touch to Improve Pain and Mood in Patients with Advanced Cancer


• Anticoagulation for the long term treatment of venous thromboembolism in patients with cancer


• Cost savings associated with US hospital palliative care consultation programs

National Hospice Leadership Conference This Week

The National Hospice and Palliative Care Organization's (NHPCO) National Hospice Leadership Conference is this week in Washington, DC. Today is Hospice Capitol Hill Day. People can attend a virtual version of this event; see NHPCO's site for more details.

Next week, the Center to Advance Palliative Care (CAPC) is hosting an audio conference on April 30 from 1:30-2:30pm ET on how palliative care teams can avoid burnout.

This audio conference will focus on the challenging balance of caring for ourselves while caring for others. What are the unique aspects of compassion fatigue for professionals working in the field of palliative care? What strategies can help palliative care professionals strengthen their personal resiliency?

Caring for Terminally Ill Children

This report from Minnesota Public Radio talks about a recent conference that focused on the problem of proper pain management in children. Children's Hospitals and Clinics of Minnesota conducted a training to show physicians the latest pain management techniques.

The Open to Hope Foundation published a post from a parent whose child died of a terminal illness. She talks about her grief and facing the reality that her child's life was ending.

If the doctors have the courage to speak the unspeakable and tell us what no parent ever wants to hear, they give us the gift of quality time with our children. We hope that the web of support they have given us through treatment doesn’t end with this new phase of life.

For those of us who choose to take our children home from the hospital when western medicine has failed, we are not taking them home to die…we are taking them home to live. We bring them home to live and we protect them with the fierceness and strength of Mama Bears, Our hearts open wide, as we hold all the hope of the universe inside. We take them to the snow, the zoo, Disneyland. We try and compress a lifetime of happiness into the little time we have left.

Proposed Medicare Hospice Wage Index for FY 2010

The Centers for Medicare & Medicaid Services (CMS) issued a proposed rule to update the Medicare Hospice Wage Index for fiscal year (FY) 2010.

From the release:

Payments to Medicare participating hospices are estimated to decrease by approximately 1.1 percent in FY 2010. The decrease in the hospice payments is the net result of a 3.2 percent reduction in payments due to the phase-out of a temporary adjustment used in calculating the wage index, partially offset by an estimated 2.1 percent increase in the hospital market basket indicator of costs.

The elimination of this adjustment with a 2-year phase-out would result in more accurate payments and saves Medicare $2.9 billion over five years. The proposed phase-out would include a 75 percent reduction for FY 2010 and ultimately eliminate it in FY 2011. As such, hospice expenditures are estimated to be about $13 billion in 2010 for more than 3,000 for-profit and not-for-profit hospices across the country.

This proposed rule also solicits comments on a number of potential policy changes for the future. In order to increase accountability in the recertification process, the rule seeks comment on requiring a physician or nurse practitioner to visit every hospice patient after 180 days on the benefit, and every benefit period thereafter.

This proposed rule also solicits comments on broader payment reform, such as alternate methods to calculate the hospice aggregate cap.

This proposed rule will be published at the Federal Register on April 24, 2009. Comments are due 60 days after publication by June 22, 2009. A link to the proposed rule and accompanying documents will be available at: http://www.federalregister.gov/OFRUpload/OFRData/2009-09417_PI.pdf

Voices of Grief: Preparing for the Memorial Service

We ask readers of HFA’s bereavement newsletter, Journeys, to send us stories of what has helped them grieve after a loved one has died. Provena Hospice in Champaign, IL recently sent us the reflections shared by the wife of one of their patients after her husband’s funeral.

It helped to read Journeys and realize anew that each person handles grief differently.

I’ve always felt that funerals and visitations were the hardest things to endure after the loss of a loved one. My husband died recently at age 90. We had been married for 65+ years. Our daughters, granddaughters, and I decided that we would have a brief service at the grave site and then later have a Memorial “Celebrating A Life” service.

Our daughter Nancy made all the arrangements for the Memorial service. I needed to “dig out” photos to display – from his childhood, our college life, our marriage, WWII and the Korean War, and some fun things that we shared. Our daughter Carol prepared and gave the eulogy honoring her Dad which included some of the humorous things he did and said during the girls’ childhood. Some friends in the audience talked about their experiences (both serious and funny) with him.

This activity occupied my mind during the first few weeks. It is helpful now to remember the good times (and some not so good i.e., the wars) and recognize again how very fortunate we have been.

Bereavement rituals are an importance part of the grieving process. Alice Parsons Zulli wrote about healing rituals for HFA:

Ritual is sacred. Rituals can help to restore a sense of balance to life. Although many of us create ceremonies or rituals for one occasion or another, few understand why rituals help in adjusting to change. Even fewer understand the power of ritual to strengthen the bonds that connect us. Caregivers can influence the grieving process through ritual, customs, and traditions, and they can be sensitive to, and draw from, diverse cultures to create therapeutic rituals.

It is natural to express ourselves with physical actions. Death and grief are experiences that may make us feel helpless or out of control as emotional and physical energy is thrown out of balance. Rituals or ceremonies link physical and mental expression in a way that allows us to express and act out feelings and beliefs.

It seems that nobody teaches us how to die or to companion someone who is dying, or how to grieve or help those who are grieving. Much of what we know about dying and grieving we have not been taught explicitly, but have "caught" from culture, religious beliefs, and family traditions.

Caregivers must incorporate ritual to teach and mentor those who are embarking upon the journey of dying and grieving.

Read more from this article, Healing Rituals: Powerful and Empowering by Alice Parsons Zulli, published in Living With Grief: Who We Are, How We Grieve.

National Volunteer Week: Hospice and the Marines

National Volunteer Week (April 21-25) celebrates the work of volunteers nationwide. Cpl. Adam Austin and Staff Sgt. Deuntae Preston are both members of the United States Marine Corps and serve as volunteers through a unique partnership with Heartland Home Health Care & Hospice in Kansas City. The program matches Marines in the Single Marine Program with veterans in hospice care. HFA interviewed Cpl. Austin and Staff Sgt. Preston in conjunction with our upcoming teleconference, and asked them to tell us about their hospice volunteer work with fellow veterans.

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

Cpl. Adam Austin

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?

Staff Sgt. Deuntae Preston

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.

Thursday is National Healthcare Decisions Day

April 16, 2009 has been designated as National Healthcare Decisions Day. The National Healthcare Decisions Day Initiative 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. HFA proudly joins these participating organizations supporting this initiative.

Bill Colby, senior fellow for law and patient rights at the Center for Practical Bioethics, writes about the importance of having “the talk” about your end-of-life wishes in this op-ed for the Kansas City Star.

Celebrating Volunteers

One way that hospice sets itself apart from other healthcare systems is in its integral reliance on volunteers. The Medicare Hospice Benefit requires that at least five percent of patient care hours be provided by volunteers. Recent statistics from the National Hospice and Palliative Care Organization (NHPCO) show that hospices actually exceed the required percentage, coming closer to seven percent of patient care hours, and that hospice volunteers give more than 16 million hours of service annually.

One critical role that hospices have discovered for volunteers is utilizing their ability to help bridge a cultural gap in the community. By recruiting volunteers from a diverse population, hospices can better serve their patients and families. Volunteers who can communicate in a language other than English, and who understand another culture, can be a great addition to a hospice's outreach and education efforts. We talked to such volunteers in preparation for HFA's 2009 teleconference, and were particularly moved by the contributions of the Villas, a Hispanic/Latino couple who volunteer for Capital Hospice in the Greater Washington, D.C. area.

The United States Senate recently passed the Senator Edward M. Kennedy Serve America Act. The legislation, which had broad bipartisan support, would expand the ranks of AmeriCorps, which was created by President Bill Clinton in 1993 to bring federal volunteer programs under a single umbrella. In addition to adding positions to AmeriCorps, the bill would create four new service corps. The bill also seeks to encourage volunteer work among retirees.

FDA Responds to Hospice and Palliative Community

On March 31 the Food and Drug Administration warned nine companies to stop making 14 prescription opioids that were unapproved. After hearing feedback from the hospice and palliative care community, the FDA has reversed part of that ban and promises to continue to allow one form of liquid morphine (20 mg/ml morphine sulfate solution) available.

Read coverage from the Associated Press, New Health America blog, and the American Academy of Hospice and Palliative Medicine.

Advice for Caregivers: Reducing Hospital Readmissions

The Chicago Tribune's health care blogger, Judith Graham, recently posted about a New England Journal of Medicine report that showed as many as one in five Medicare patients get readmitted to the hospital within 30 days of being discharged. She offers some practical advice for patients and their caregivers to help plan for discharge, and manage chronic conditions after leaving the hospital.

Hospice Care Across the U.S.

We enjoy reading articles about hospice care that appear in local newspapers across the country. This article from The Daily Progress in Charlottesville, VA, discusses Hospice of the Piedmont's bereavement support and other services.

Adult Day Care

Carol Bradley Bursack at OurAlzheimers.com writes about Adult Day Care centers this week. She discusses the types of centers, the services offered, and costs.

Accepting Death

Slate has been running a series of articles on grieving by Meghan O'Rouke. The latest is titled "Watching Someone You Love Accept Death. " O'Rouke talks about how her mother's acceptance that her life was ending, affected O’Rouke’s own grief process.

A few weeks ago, I spoke by phone to Holly Prigerson, a clinical researcher on grief at the Dana Farber Cancer institute at Harvard. She told me something that lodged in my brain. Research has shown that when a terminally ill patient "accepts" her death, the bereaved—her family and friends—typically find their grief more manageable than when a terminally ill patient is in "despair" about her death. It is, of course, difficult to study "grief," because the salient feature of grief is that it's not monolithic or singular; it's personal and variable. That said, there are many universal features of grief, I've discovered from talking to and hearing from others who've seen loved ones die. And one seems to be this, the ameliorating influence of watching your loved one accept his or her death.

While it did not directly address 'acceptance', a piece titled "You're going to die the way you live," appeared earlier this week on CNN and touches on the same subject.

The idea that dying well is as important as living well gained cultural currency last year when Randy Pausch, a computer science professor at Carnegie Mellon University, delivered a final lecture a month after learning that his pancreatic cancer had spread and was inoperable. The lecture was viewed millions of times on the Internet and adapted into a best-selling book.

"We cannot change the cards we are dealt," Pausch, who died in July at age 47, told his audience, "just how we play the hand."

Medical Care at the End of Life

This week National Public Radio interviewed doctor and bioethicist Robert Martensen, who discussed how Americans die, with most people dying in hospitals having deaths that 'do not go well.' He discussed aggressive interventions that occur, and the lack of discussion about the quality of life when a patient is at the end of life.

Earlier this week, David Tribble, the chief medical officer at Alive Hospice, wrote about a study that appeared in the March 9 Archives of Internal Medicine regarding end-of-life care discussions between patients and their doctors. The study concluded that patients who reported discussing end of life with their doctors had lower health care costs. Also, patients whose health care costs were higher had a worse quality of death. Tribble comments:

This study quantifies an issue that has been avoided largely: that Americans spend more time and money on high-tech end-of-life heroics than the rest of the world combined, and do not live any longer for it. Hospice care is not anti-technology, anti-survival, or anti-hope. It is a call for us to look seriously at what works. The fact that we have a technology does not make it effective for all people, and we actually have very good data regarding where such technology can be effective, and where it is unlikely to be effective. It is time we looked seriously at our own data and stopped performing treatments that we know are ineffective.

This study was also discussed by Maggie Jones on The New Old Age blog last week.

Another study by researchers at Thomas Jefferson University examined the discrepancy between what kind of care patients state they want and what their proxy decision maker believes they want. Researchers interviewed 200 older patients and asked about specific treatment preferences they would want if they had advanced dementia. The results showed that patients would want certain interventions less frequently than their proxys reported.

Caregiving Strain and Marriages

CureToday offers some advice for spouse caregivers to help handle the stress and changes that come with caring for their loved one. Caregiving can also be hard on a marriage when one spouse is caring for another family member. Carol O'Dell writes openly on her Mothering Mother and More blog about the stress placed on her marriage when she began caring for her mother. She gives some tips to make the caregiving process easier on your marriage.

The Center for Disease Control's Preventing Chronic Disease also released a study on caregivers of older adults with cognitive impairment and discussed the importance in knowing who is providing care in order to provide adequate public resources to assist caregivers.

The number of caregivers in the United States, including the number of caregivers of people with cognitive impairment, is expected to grow (13). If these caregivers are to continue to provide the foundation of care for people who need assistance, their health, both physical and mental, must be assured. Caregivers, particularly caregivers of people with cognitive impairment, dedicate substantial time to providing care, as our results show. Caregivers of people with cognitive impairment may provide care for long periods of time because of the slow progression of many types of dementia (17). Therefore, caregiving is of public health importance, and caregiving surveillance is vital in assessing and responding to the needs of the growing number of caregivers (5). Evaluating trends in cognitive impairment and caregiving over time is also important. Quantifying the number and type of caregivers in a community will improve our understanding of the health and quality-of-life consequences of providing care and will aid in policy making and decision making.

Latinos and Palliative Care

A recent case study published in the Journal of the American Medical Association looks at the ways healthcare providers can offer culturally sensitive palliative care. The researchers recommend using professional interpreters for discussions of health care goals.

The article offers ". . .concrete suggestions are provided for clinicians in working with interpreters, eliciting culturally based attitudes and beliefs, and implementing universal strategies for clear health communication."

End-of-life organizations must also address whether they are offering culturally proficient care. Are materials available in the language of local groups? Are interpreters available? How does the organizational environment reflect diversity? How diverse is the organization’s management and staff at every level? How diverse is the volunteer base? If changes need to be made, where do organizations begin? These questions will be explored during HFA’s April 29 Teleconference, Diversity and End-of-Life Care.

Seeking Volunteers for Complicated Grief Study

A study funded by the National Institute of Mental Health is seeking participants for a study of complicated grief .

Characterized by prolonged intense yearning and preoccupation with the lost loved one, waves of sadness and longing, bitter protest, caregiver self-blame, and a feeling of profound emptiness that does not lessen with time, complicated grief may be more prevalent in older people than in younger adults. It destroys sufferers’ lives for years, is not cured through traditional talk or drug therapies, and has seemed resistant to almost all treatment.

Variability in Hospice Availability Studied

HealthDay News reports on research presented at the American Academy of Hospice and Palliative Medicine last week looking at the level of hospice availability. Using Medicare data, Maria J. Silveira, M.D., M.P.H, M.A., of the University of Michigan in Ann Arbor analyzed whether there was a correlation between the level of county wealth, education, race and ethnicity, or age, and the level of hospice availability.

For each 1 percent increase in the proportion of households with incomes above $100,000, the author observed a 16 percent higher chance of being in the next higher category of hospice availability. For each 1 percent increase of high school education, there was a 24 percent higher chance of being in the next higher category of availability. Each 1 percent increase in elderly adults at the county level was linked to a 10 percent lower chance of being in the higher hospice category. No confounding by race or ethnicity was seen.

"To address disparities in the utilization of hospice, policymakers may need to address inequities in the availability of hospice first," the author concludes.

April 3 Round-up: Hospice Care

• Growth House's Les Morgan recently interviewed medical journalist Larry Beresford about the Medicare benefit's "hospice cap". They discussed what the payment cap is, whether it is or could effect patient care, and how hospices handle the cap. You can listen here.



• A presentation at last week's American Academy of Hospice and Palliative Medicine discussed the lack of hospice policies that covering the deactivation of implantable cardiac defibrillators (ICDs). Not having such a policy in place could allow patients to unwanted shocks at the end of life. Researcher Nathan Goldstein, M.D. of Mount Sinai Medical Center in New York reported that almost 60% of the 900 hospices surveyed had patients who were shocked after admission. Only 10.9% of the hospices had policies for deactivation of the ICD devices.



• This article from the Houston Chronicle describes how Texans are using hospice care. Reporter Cindy George states that more than 100 doctors in the state have been recently board-certified in hospice and palliative medicine during the first exam held for that sub-specialty.



• Massachusett's Patriot Ledger published an article that describes the writer Sue Scheible's experience with hospice when her father died.



• CureToday's Spring 2009 edition includes an article that expresses the concept of a 'good death'. Elizabeth Paulk, MD, director of the Palliative Care Clinic at Parkland Hospital in Dallas, and Eugene Perlov, MD, a hospice physician with Visiting Nurse Service of New York, describe their experiences with dying patients. In a related article called "The Final Journey ", photographer Beatriz Terrazas and editor-at-large Kathy LaTour spend six months documenting the Abernathy family's experiences, as Judy Abernathy faces the end of her life.

Palliative Care Grand Rounds, Volume 1, Issue 3

Palliative Care Grand Rounds is up on The Good Death blog. The "monthly blog carnival" the Grand Rounds highlights blog posts related to hospice and palliative care.

Also,the National Consensus Project for Quality Palliative Care (NCP) had revised its revised Clinical Practice Guidelines for Quality Palliative Care, Second Edition. The guidelines offer the most current information in the field of palliative care.

Pediatric Palliative Care In the News: Diversity of Patients Documents, Illinois Seeks Waiver

• A study documenting the diversity of pediatric palliative care patients was recently published in the Journal of Pain and Symptom Management. Using data from six large programs showed that ". . . patients with genetic and congenital conditions accounted for the largest numbers, but a substantial proportion had neuromuscular, respiratory, or gastrointestinal conditions, as well as cancer." Researcher Chris Feudtner, M.D., Ph.D., of Children's Hospital in Philadelphia, reported the findings at the American Academy of Hospice and Palliative Medicine meeting last week.
  

  The analysis included 511 patients, 35.2% of whom were new to the programs and 64.8% of whom were established patients.
  
  About 54% of the patients were male, 70% were white, and 57% had public insurance. Most of the patients were either 1 to 9 years old (37.2%) or 10-to-18 years (30.1%). However, patient age ranged from less than 1 month (4.7%) to 19 years or older (15.5%).

• Illinois is seeking to join the states of California, Florida, and Colorado* in receiving a federal waiver to offer pediatric palliative care to Medicaid patients, without requiring them to forgo curative treatments. A bill to start a pilot project has passed the Illinois Senate <

Compassion Fatigue in Healthcare Professionals

The Indiana University School of Medicine and researchers from Regenstrief Institute recently published an analysis of compassion fatigue in cancer-care providers in the Journal of Health Psychology. Compassion fatigue is described as when healthcare providers develop "a distance from the patient as a way of self-protection. Symptoms of compassion fatigue include chronic tiredness and irritability, lack of joy in life, engagement in behaviors which are fine in moderation, such as drinking, at a destructive level." The researchers "reviewed 57 studies to identify the prevalence of compassion fatigue among cancer-care providers, how to detect it and means of prevention and treatment."

On the same day this analysis was released, the New Old Age blog published a post from Theresa Brown, an oncology nurse, on how she and her colleagues deal with grief in the workplace.

My hospital also pays for us to have free individual sessions at the Good Grief Center if we feel we need them. This off-site arrangement works better for me because it means I’m not trying to process my grief during stolen time on the job.

I’ve gone twice now, once to talk over a particularly gruesome death, and most recently to discuss our very tough December. I thought the counselor and I would talk about death, grief and grieving, and we did some of that, but mostly we talked about how to leave work at work. One idea she had was to call a friend when I leave the hospital at the end of shift, making an immediate break with my work world. Some people, she said, sit in their car for 10 minutes listening to the radio, zoning out, before they take off for home.

While talking to the grief counselor I realized that riding my bike the two miles to and from the hospital transitions me from work to the rest of my life. My ride home is mostly uphill, and the last few blocks can be a killer after a 12-hour shift. But when I finally get home, sweaty and panting, I’ve mulled over the ups and downs of the day — the blanket I forgot to get someone, the home care nurse who drove me crazy, the impossibility of being three places at once — and I’ve also begun to digest the sadder kinds of events that weigh on me over time.

FDA Bans Certain Opioids

Earlier this week, the Food and Drug Administration (FDA) told companies to stop manufacturing 14 unapproved opioid drugs. According to the FDA, this ban includes certain "high concentrate oral solutions containing morphine sulfate and unapproved immediate release tablets containing morphine sulfate, hydromorphone, or oxycodone." View the complete list of approved and unapproved products at this FDA Q&A page .

Manufacturers have 60 days to stop manufacturing these products and distributors have 90 days to stop shipping existing products. Pallimed covers some of the implications for prescribing physicians and patients receiving hospice and palliative care.

Alabama Emergency Physicians Encourage Adoption of POLST

The Alabama chapter of the American College of Emergency Physicians urges the state's emergency physicians to support the implementation of Physician Orders for Life-Sustaining Treatment (POLST) forms.

For more information on other states using POLST, see here. Also, learn more about POLST.

Industry News: Children's In-Patient Hospice Facing Economic Challenges

Saturday's Los Angeles Times featured a story and accompanying slide show and audio that the George Mark Hospice, the only free-standing hospice and respite care center for children in the country, may need to close due to financial constraints. The hospice is funded mostly by donations and grants, only 5% of the care provided is reimbursed by other means.

Some states are working on with the Centers for Medicare & Medicaid to be able to provide hospice services for children while not requiring them to forgo curative treatments. California received such a waiver in December 2008. Children's Hospice International is one group working to make these changes more widespread and has supported a bill (HR 722) that would give all states the option of providing similar care models under Medicaid.

Aging Caregivers Unsure of Disabled Child's Future

This article from The Florida Times-Union tells the story of parents who care for their severely disabled child, and their worries over who will provide that care when they are no longer able to do so.

In Florida, more than 25 percent of adults suffering from mental retardation live with caregivers over the age of 60, and about 61 percent of caregivers also suffer from depression as a result of their role.

" 'Aging caregivers' is almost being considered a national crisis," said Charlotte Temple, director of advocacy at Arc Jacksonville. "Many have never used community outreach programs or accessed services until it was too late."

Temple said she often sees siblings of disabled adults scrambling because the 80-year-old caregiver has died and the family has nowhere to turn.

This is the first large generation of disabled people not being institutionalized, she said, and there isn't enough space or money to accommodate them.