Racial Differences in Hospice Utilization Among Heart Failure Patients

The March 8 issue of the Archives of Internal Medicine reports that among patients with advanced heart failure, blacks and Hispanics are less likely to enroll in hospice care. Researchers from the Institute for Aging Research of Hebrew SeniorLife and Boston University School of Medicine adjusted for sociodemographic, clinical, and geographic factors and found that blacks were 41% less likely to use hospice care than whites, and Hispanics were 51% less likely.

Researchers looked at 98,258 beneficiaries who were not enrolled in 2000, and whether or not they entered hospice in 2001.

From the Ivanhoe Newswire:

Concerning experts is the fact that blacks develop heart failure at a significantly higher rate than Hispanics and whites, mostly because of their increased rates of diabetes and high blood pressure. A recent study revealed young and middle-aged blacks suffer heart failure 20 times more than white individuals in the same age group.

"Our findings document significant racial differences in hospice use and show that overall increases in the availability of hospice services in the 1990s have not erased racial differences in hospice utilization," Jane L. Givens, M.D., M.S.C.E., lead author and a scientist at the Institute for Aging Research in Boston, was quoted as saying.

Earlier studies show cultural belief and values play an important role in hospice use, but Dr. Givens says hospice care must be culturally sensitive to work.

Read the Cardiology Today and MedPage Today reports of this study.

HFA's 2009 initiative focused on Diversity and End-of-Life Care, and also included this special report on African Americans and End-of-Life Care. The report 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.

Virtual Grief - the Role of Internet Support

Last month NEWSWEEK's religion editor, Lisa Miller, wrote a piece on virtual grief that examined the impact and limitations of online bereavement, specifically on Facebook.

One might imagine such virtual mourning is shallow, but it's not. Here is a real gathering place, where friends can grieve together—and where the deceased continues, in some sense, to exist. "You're creating something like a tombstone, but people can visit that tombstone anytime, anyplace, as long as they have Internet access," says Brian McLaren, a leader in the emerging church movement and author of A New Kind of Christianity. "That seems to me to be a great gain."

Facebook changed their policy regarding profiles of deceased persons in 2009, now allowing them to remain in place indefinitely. TIME ran a piece in August 2009 talks about what happens to a deceased person's online profiles, and also how those profiles can be a source of comfort for grieving parents:

Before her 21-year-old daughter died in a sledding accident in early 2007, Pam Weiss had never logged on to Facebook. Back then, social-networking sites were used almost exclusively by the young. But she knew her daughter Amy Woolington, a UCLA student, had an account, so in her grief Weiss turned to Facebook to look for photos. She found what she was looking for and more. She was soon communicating with her daughter's many friends, sharing memories and even piecing together, through posts her daughter had written, a blueprint of things she had hoped to do. "It makes me feel good that Amy had a positive effect on so many people, and I wouldn't have had a clue if it hadn't been for Facebook," says Weiss.

An independent Tufts University student newspaper has written about the phenomenon of memorials on both Facebook and MySpace:

In addition to dealing with the grieving process, online resources can be useful for organizing friends of the deceased for a common goal. In December 2006, Lily Karian, a freshman at Tufts, committed suicide. Her friends and family created a Facebook group in her memory and later used this group as a forum to organize a suicide prevention fundraiser, Walk for Lily, in her memory. The walk raised over $41,000.

“If it weren’t for the [Facebook] page, we wouldn’t have been able to get people together and explain what we were doing to raise money and mobilize the efforts,” Max Chalkin, a senior who organized the walk, said.

Diane Nash, a college professor who teaches courses on death and bereavement, opined in the Christian Science Monitor about why young people find it comforting to share their grief with others online:

If you search for "In Memory of..." on Facebook more than 100,000 results pop up. Following Michael Jackson's death, more than 150,000 people commented on his Facebook wall. The Virginia Tech tragedy pulled millions of young people to the site.

I have taught bereavement courses for 10 years and recently one of my students shared that he could not talk to his parents about his friend who died in an auto accident because they would cry or immediately change the subject.

But he could visit the world's largest social media website any time of day or night to talk about how much he misses his friend and how helpless he feels.

HFA is examining the role the internet plays in the lives of grieving children and adolescents in an upcoming webinar on June 15, 2010. The webinar is part of a three-part series on Helping Children and Adolescents Cope with Grief and Loss.

Participants in the webinar will be able to:

1. Describe the roles of the Internet in the lives of children and adolescents and discuss three ways that adolescents may utilize the Internet in bereavement;
2. Discuss the ways that children and adolescents use social networking sites such as Facebook to memorialize and discuss loss as well as the ways they might access grief specific sites such as kidsaid.com;
3. Describe the opportunities that adolescents have to form on-line relationships that may result in loss;
4. Discuss the advantages and disadvantages of the Internet as a form of grief support for adolescents;
5. Discuss the clinical implications of research of Internet use for intervention with children and adolescents and their families, describing the possibilities and limitations for adults or organizations to offer support in a monitored, safe way;

Individuals or organizations can register for this program here. Organizations can also register for the entire series 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.

Hospice Patients with Implantable Cardioverter Defibrillators

A study of hospice patients with implantable cardioverter defibrillator (ICD) was published in the March 2, 2010 issue of the Annals of Internal Medicine. The study shows that the devices can cause unnecessary suffering at the end-of-life. Researchers at Mount Sinai gathered survey responses from 414 hospices. While most (97%) of the responding hospices admitted patients with ICDs, nearly 60 percent of patients did not have the shocking function of the ICD deactivated. Researchers found that only 20 percent of hospices had a question on their intake forms to identify patients with ICDs, and only 10 percent reported having a policy in place to discuss deactivation with patients and their families.

“Hospices are the foremost experts at dealing with the complex communication issues surrounding end-of-life discussions with patients and their families,” study researcher Nathan Goldstein, MD, assistant professor at the Hertzberg Palliative Care Institute, Mount Sinai School of Medicine in New York City, said in a press release. “The fact that so few organizations have a policy about deactivation shows how complicated these conversations are. Having a policy in place can improve communication and provide better quality of care for patients and their families.”

Goldstein and colleagues created a sample deactivation policy based on existing programs in the hospices surveyed that has been published along with the original study. The policy outlines steps for identifying ICD devices; informed consent to deactivate the device; and processes for reprogramming ICDs — including in emergent scenarios and postmortem care. The researchers emphasized that this policy has not been pilot-tested and should be implemented only after identifying community partners who can assist with ICD reprogramming.

Deadline Approaching for Grieving Teen Grants Submission

A Letter of Intent is due Wednesday, March 10 for HFA's Grieving Teen Grant Program

Hospice Foundation of America announces its new funding program to support grieving young people ages 13—17. Applicants must be non-profit hospices or other non-profit bereavement organizations whose programs are available to the entire community in which they are located. Hospice Foundation of America will award one $10,000 grant for program-related expenses (including but not limited to purchase of equipment or materials, publications, or other curriculum-related materials.) Priority will be given to programs who offer innovative programs for young people ages 13—17, with a special priority given to programs that focus on outreach to diverse populations. HFA will also award a number of smaller $1,000 grants for noteworthy programs.

To be considered for funding, please submit the following information in a one-page Letter of Intent (250 words maximum):

• Primary contact: Name, address, phone # and email
• A snapshot of your organization, including:
  • Mission statement
  • Number of professional staff and volunteers
  • Geographic region served by your programs ; and
  • Programming provided to children, adolescents and their families
• A brief description of how funds from HFA would be used

Letters should be submitted via email to grants@hospicefoundation.org by Wednesday, March 10. Letters will be reviewed on an ongoing basis. Selected organizations will be invited to submit a full proposal, which will be due on Wednesday, April 21. Grants will be awarded by June 15.

View more information on the About Us - Grant Programs page of the HFA website.

March 2010 Eldercare Notes

A round-up of the some eldercare-related articles and blog posts from the last few weeks:

• The GeriPal blog posts about a study in the Journal of the American Geriatrics Society by researchers at the University of Cambridge that examines functional status during the last year of life in the very old.
  

  The study illustrates a point we have recently stressed on GeriPal: The vast majority of older persons will have some degree of significant disability in the last years of life. This is in contrast to the popular perception that disabiity can be prevented if one does all the right things. Encouraging good health habits is a very good thing. However, suggesting that if you become disabled, it must be because you did something wrong is a very bad thing.




• The New York Times' Economix blog writes about the staggering expenses of old age:
  

  A new study, from the Center for Retirement Research at Boston College, estimates that at age 65, the typical married couple should expect to spend $197,000 on uninsured health care costs over the rest of their lives. This total includes insurance premiums, out-of-pocket costs and home health care costs, but it does not include nursing home care. Including the cost of nursing home care, typical lifetime health care costs shoot up to $260,000.
  
  Not everyone spends “just” $197,000 though. According to this new study, about 5 percent of these households will spend more than $311,000 on their uninsured health care costs, not including nursing home care. Including nursing home care, there is a 5 percent risk that cumulative health care costs increase to $570,000.



• The Eldercare Support Group blog writes that sometimes a family member may need to use 'sneaky' ways to get a senior to accept a respite carer, in order to give the primary caregiver some needed assistance. The author writes about her attempts to have her father accept someone else being in the house:
  

  The first few times I left my father while I did errands, I left him with a “senior companion” – this is a person, usually a senior citizen who volunteers their time to sit with an elderly person and talk, play cards, watch a movie, etc. Unfortunately, this companion didn’t work for my Dad. He felt insulted that he had to be cared for and irritated that he had “to entertain” the companion.
  
  In another trial, I invited a lady to come over under the auspices that she wanted to learn to play Cribbage. My father loved to play cribbage and could do so until the last couple of weeks of his life. This worked well at first but he soon figured out that when she came over, I left the house and he began to resent her visits and started calling her “the babysitter”.
  
  So I decided to hire a “housekeeper”. Fortunately I had had one in the past when I was busy with my kids in school so it was not completely out of the ordinary. This “housekeeper” swept the floor, put the dishes in the dishwasher, made my Dad a sandwich if he wished and generally just watched to make sure he stayed home and helped him up if he fell. This way, my Dad could lie down and watch his TV or sit out on the patio and not feel compelled to “entertain” the caregiver.



• In this New York Times' Cases column, a geriatric psychiatrist talks about imposing one's view of old age on seniors.
  

  She sat silently in a wheelchair, her 93-year-old silhouette stooped in the bathing light. . . . I asked her why she had come to the nursing home, and she described the recent passing of her husband after 73 years of marriage. I was overwhelmed by the thought of her loss, and wanted to offer some words of comfort. I leaned in close and spoke.
  
  “I’m so sorry,” I told her. “What has it been like for you losing your husband after so many years of marriage?”
  
  She paused for a moment and then replied: “Heaven.”
  
  Seeing my bewilderment, she smiled and went on to describe how she had endured decades in an unhappy marriage with a gruff, verbally abusive man.
  
  As she spoke, I realized why my instincts were so completely off. In my misguided empathy I had committed what William James called the psychologist’s fallacy, assuming incorrectly that one knows what someone else is experiencing. With this newly widowed patient I imagined that only a life of sadness and decrepitude remained, and I felt bad about it.



• Susan Brink wrote a three-part series for Kaiser Health News that appears on MSNBC. The first part looks at the difficult medical decisions a family faced when their 87-year-old mother had a stroke.
  

  Her sons said that before her stroke, they had believed that they understood her wishes. Yet when they examined the decision-making grids and flow charts of her written instructions, they were confused about the details of the many complex options. She had decided that she didn’t want to be intubated or put on life support. Did that preclude temporary nasogastric tubes for nutrition? A respirator was against her wishes, but what about a short-term oxygen mask?

  The series also includes pieces on living wills, and hospice and palliative care.


• ABC's Good Morning America did a series of segments in January on adult children discussing tough topics, such as living conditions and driving ability, with their aging parents.


• Jane E. Brody writes about the importance of regular exercise to benefit the mind and body of people at any age. She cites studies that show the impact of regular exercise on diseases such as cancer, osteoporosis, cardiovascular disease, diabetes and dementia.


• Paula Span shares some products shown at the Consumer Electronics Show that are targeted to seniors.

Palliative Care Up Close

The Philadelphia Inquirer's Michael Vitez spent months visiting a palliative care team at Abington Memorial Hospital. He follows the case of Mary Tole, a 74-year-old patient whose family must decide, along with physicians, what type of care she would have wanted after she became suddenly seriously ill.

Palliative care is medicine's response to the dismal way people have died. One purpose is to help patients and families make hard decisions when facing chronic illness or death.

The end of life is also when the use and expense of health care soars. Medicare spent an estimated $143 billion in 2009 caring for people in their last year. That is enough to provide health insurance to 35 million Americans for a year.

One question palliative care raises is this: How many Americans would want the expensive, all-out assault of intensive medicine if they understood all their choices and likely outcomes?

Vitez had previously written a series about end-of-life care care 13 years ago that won a Pulitzer Prize. Tim Cousounis, at the Palliative Care Success blog, writes about the comparison between palliative care then and now:

Has much changed around end-of-life care in those 13 years? Surely, a patient in an ICU with a poor prognosis is more likely today than 1996 to be consulted by a palliative medicine physician such as Dr. Dietzen. But how much more likely, and if a consult is requested, is the timing appropriate? Just as surely, large variations in late-life care continue to persist among hospitals and communities, still raising questions about the appropriate role for acute hospital care in the management of patients with advanced illnesses.

As one of the doctors in the 1997 article stated ," America wants to offer the most advanced technology and treatments to everyone, yet keep health-care costs down."

How to balance those desires, the doctor added, "is a discussion nobody wants to have." Thirteen years later, when one considers the discussions taking place in the name of health reform, one must wonder how far have we advanced.

February 2010 Palliative Care Grand Rounds

The third edition of Palliative Care Grand Rounds for 2010, a "monthly blog carnival" highlighting blog posts related to hospice and palliative care, is up at Larry Beresford's blog.

Small Study on Pediatric End-of-Life Care Raises Big Headlines

A small study of 141 parents published in the Archives of Pediatrics & Adolescent Medicine has been written up by the Associated Press, HealthDay News, TIME Magazine, and The Boston Globe. The headlines, such as "Parents say doctors hastened death for dying kids," and "Some Parents Consider Hastening a Sick Child's Death" outsize the scope of the study and can mislead readers.

The study, led by researchers at the Dana-Farber Cancer Institute in Boston, interviewed parents of children with terminal cancer about their experiences at the end of their child's life. Questions included whether a parents had thought about asking a physician to hasten death, and whether they had that type of conversation with their child's doctor. In the three weeks preceding their child's death, 19 parents considered asking their child's doctor about hastening their death, and 13 parents did have a discussion with caregivers.

The primary conclusion signified by the headlines, is not what one of the study's authors chose to highlight (from The Boston Globe):

Wolfe thinks the study should be a starting point for discussion about end of life care for children. "The important point is that these considerations may be mitigated if we did a better job taking care of children suffering while we are doing end of life care," she said in an interview. "There need to be opportunities for families to express their fears and for us to be able to indicate what is possible in terms of controlling pain and discomfort at the end of life."

She cautioned that not every child dying of cancer will have suffering relieved. "We still as yet cannot promise families that their child will be pain free," she said.

There have been calls for increased access to pediatric hospice and palliative from organizations such as Children's Hospice International and the Children's Hospice and Palliative Care Coalition in California, and it's been written about on the Kaiser Health News Network, and pilot programs have been tried in some states (see these past blog posts about efforts in Pennsylvania and California.)

We wish this study would be met with headlines such as, "Study Highlights the Need for Improved Access to Pediatric Hospice," or "Pain Management for Terminally-ill Children Needs Improvement," because those headlines would not only be less inflammatory, they would also be more appropriate, and more helpful to the children and families faced with these issues.

MedPAC March 2010 Report Released

The Medicare Payment Advisory Commission (MedPAC) released its 2010 March report yesterday. Items affecting hospice services include these recommendations from the fact sheet:

Hospice

• The Congress should update the payment rates for hospice for 2011 by the projected rate of increase in the hospital market basket index less the Commission’s adjustment for productivity growth (a net update of approximately 1.1%). The Commission also reiterated its hospice recommendation from March 2009:

• The Congress should direct the Secretary to change the Medicare payment system for hospice to: have relatively higher payments per day at the beginning of the episode and relatively lower payments per day as the length of the episode increases; include a relatively higher payment for the costs associated with patient death at the end of the episode; and implement the payment system changes in 2013, with a brief transitional period. These payment system changes should be implemented in a budget neutral manner in the first year.

• The Congress should direct the Secretary to: require that a hospice physician or advanced practice nurse visit the patient to determine continued eligibility prior to the 180th-day recertification and each subsequent recertification and attest that such visits took place, require that certifications and recertifications include a brief narrative describing the clinical basis for the patient’s prognosis, and require that all stays in excess of 180 days be medically reviewed for hospices for which stays exceeding 180 days make up 40 percent or more of their total cases.

• The Secretary should direct the Office of Inspector General to investigate: the prevalence of financial relationships between hospices and long-term care facilities such as nursing facilities and assisted living facilities that may represent a conflict of interest and influence admissions to hospice, differences in patterns of nursing home referrals to hospice, the appropriateness of enrollment practices for hospices with unusual utilization patterns (e.g., high frequency of very long stays, very short stays, or enrollment of patients discharged from other hospices), and the appropriateness of hospice marketing materials and other admissions practices and potential correlations between length of stay and deficiencies in marketing or admissions practices.
  
• The Secretary should collect additional data on hospice care and improve the quality of all data collected to facilitate the management of the hospice benefit. Additional data could be collected from claims as a condition of payment and from hospice cost reports.

Choosing Hospice and Palliative Medicine as a Subspecialty

The new blog hosted by the American Academy of Hospice and Palliative Medicine (AAHPM) included a recent post by medical student Jacqui O’Kane. She writes about the reactions she receives from friends and family when they hear about her subspecialty, and why she feels hospice and palliative medicine is an important field.

Fortunately, doctors do much more than cure. We are in the business of healing, and healing does not always mean curing, nor does it even necessarily mean affecting a physical improvement. Physicians may heal in other ways too, encouraging emotional, mental, and spiritual convalescence in patients and their families.

In fact, it is in these “alternative” forms of healing that the HPM physician shines.