Hospice Staff Given Recognition in Tucson

The Arizona Daily Star reports on a local award, Ben's Bells, started to honor people who make the Tucson community a better place to live. Last week the employees of Casa de la Luz Hospice received the "belling" after a dying man asked his family to honor the hospice staff. The Ben's Bells project began after the death of Ben Maré Packard in 2003, who was almost three years old. The boy's family hopes the project will remind people to be kind, to help ease one another's pain.

The recognition was a huge accolade for the staff, said Dasa Schmidt, the marketing director for Casa de la Luz.

"It was such an honor and we are so grateful for the recognition and the support," she said.

About 15 people were there for the ceremony, she said, everyone from the social worker to the spiritual counselor who had helped the family with Daniel Arvayo's transition.

"They brought his picture, so it almost felt like he was present," Schmidt said.

The hospice is in its 10th year and is locally owned and operated, she said. Most of its patients remain in their homes, but the hospice also has an inpatient unit and a residential home.

In all of its services, she said, the hospice follows a model of care that treats the whole patient, and family members, too. For example, the facility has a bereavement-services program that cares for families for a year after their loved one's passing.

"We just try to make sure they can process their grief properly and with lots of love and support," Schmidt said.

She also praised the Arvayos.

"We just feel so honored to be recognized by Ben's Bells and Del and it was a privilege to take care of Mr. Arvayo and his family. They're very special, as is every single person we have the opportunity to be with."

Communication Tips for Caregivers

RNCentral offers this list of 50 communication tips and techniques, for professional nurses as well as for family caregivers. The tips are grouped by areas, including memory loss, speaking, attention, nonverbal, behavior, and with others. Each item links to more detailed information from a variety of websites.

Lessons from a Dying Patient

Last week in the Wall Street Journal's online column, The Doctor's Office, Benjamin Brewer, MD writes about lessons he learned from a dying patient. Dr. Brewer has a family practice in the rural village of Forrest, Ill. There were also follow-up questions answered in the WSJ forums.

Even though death is an inevitable part of the human condition, it's not something that most doctors, including me, ever get too comfortable with. We get used to pushing it off until another day.

When death is approaching, the natural tendency is to avoid situations that are uncomfortable, emotionally detach, visit less often, fill our time with something that seems more productive.

It's during those times when I remind myself to slow down, sit down and listen. What I have to offer when there is nothing more that medicine can do is some comfort and companionship.

Emergency Planning for Hospices and Eldercare Agencies

The recent floods in the Midwest have highlighted the need for hospices and other agencies that provide care to the elderly to have an emergency plan in place in case of a natural disaster. This post from Caregiverlist.com provides a checklist for those providing care in an elderly person's home. Pallimed conducted an interview with David Wensel, DO, hospice & palliative medicine physician for Hospice of North Iowa. Dr. Wensel discussed the challenges of providing care to their hospice patients after the flooding.

Pallimed: What are the important lessons learned from the flooding to share with other hospice agencies as they look at their own disaster planning?

Dr. Wensel: The greatest lesson learned is to plan for the worse case scenario. As a hospice think about if you lost half your staff, some of your patients had to be evacuated, and you had no safe water. You can never plan for every possible problem that might come up, but it would be very helpful to talk through different disaster plans with your staff. You never realize how wonderful it is to wash your hands, brush your teeth or take a bath until you can't. I had never thought about all the things we do to care for patents that require water.

Helpful Way to Think About Caregiving: Six Stages

I came across an online radio broadcast about the Six Stages of Caregiving that aired earlier today (Thursday). The stages are described on the Caregiving.com website, and were developed by Denise M. Brown, who runs The Center for Family Caregivers in Park Ridge, Ill. The site is a little difficult to navigate but stages of caregiving she describes: expectant, freshman, entrenched, pragmatic, transitioning, and godspeed - can be useful to those starting on the caregiving journey and offers some excellent suggestions for handling your changing role. The radio broadcast dealt with the first three stages and the next three stages will air next week.

Hospice Social Worker Addresses Ethical Questions

In this article from The Ithaca Journal, hospice social worker Jeff Collins discusses some of the ethical questions that can arise for hospices while caring for their patients. He says these ethical questions can create 'dynamic tension' for hospice staff and the patient's family, and that ". . . this is a tension we need to accept to truly meet the patient where they are."

In our day-to-day work, most ethical questions we face turn on issues of patient choice. One fairly common example can arise in home care. Most of our patients live at home and have sufficient day-to-day care from family and friends. Sometimes, though, we will have a patient who lives alone or has a frail caregiver. Staying at home might be incredibly important to that patient, but because of growing weakness, the patient's self-care capacity may diminish and the whole situation may become riskier. Sometimes, insurance pays for the kind of custodial care that the patient needs, but that is rare. The hospice staff wants the best and safest care for the patient and starts to think of a transfer to a nursing home or the hospice residence. But the patient wants to be home and often sees a fall or even death as far less of a concern than leaving home. This sort of situation can create a great deal of dynamic tension. How much risk is too much risk, and who has the right to say that the risk is too much? What leverage do we have to impel changes, especially with a rational patient? Do we need to call Adult Protective Services? We live with this tension and explore the situation among ourselves and with the patient and family. Things usually turn out OK, in no small part because of that dynamic tension.

The Role of Music Therapy

Music therapy can have a role in caring for the seriously ill and dying; it is one method that can help to ease pain and stress at the end of life.

• From Growth House's Goodbyes blog, by Deborah Bradley Ruder, she relates the role of harpist Nancy Kleiman. Kleiman shares her music across a variety of settings.

She doesn't have an assigned spot but goes where she is needed, whether to patient rooms or common areas. While riding in a crowded hospital elevator one day, a woman turned to her and said, "Do you ever play for patients? My mother is dying." "I'm right behind you," is Nancy's typical reply.

• Pallimed's new Case Conferences blog takes cases from the University of Pittsburgh Institute to Enhance Palliative Care and posts them twice a month, allowing comments and discussions. In the latest post, Andrea Scheve, MM, NMT, MT-BC, writes about the use of music and musical life reviews for a heart transplant patient.

Musical life reviews are a way for people to celebrate their lives, their love for each other, and their family traditions. Just as certain olfactory sensations can trigger memories and emotional reactions, auditory sensations (music) are linked to memories and emotions, making the life review process seamless in musical form.

Anticipatory Grief for Dementia and Alzheimer's Patients Not Unusual

The Eagle-Tribune (MA) dealt with a question about anticipatory grief among family members of Alzheimer's and dementia patients. The executive director of Elder Services of the Merrimack Valley, Rosanne DiStefano, answers a question from a member of a caregiver support group about mourning the loss of a family member before they die.

Families caring for someone with dementia often start the grieving process long before their loved one passes away. Many times the caregiver is not even consciously aware they are plodding through the stages of grief; they may be somewhat aware of bouts of sadness, depression, frustration and even anger or resentment, but they might not be able to put a label on the experience nor completely understand why they are experiencing these clashes of emotions.

More on Antipsychotic Use in Dementia Patients

The New York Times weighs in again in this article about the use of antipsychotic medications for patients with dementia. Alternative approaches to medication are also discussed, such as 'environmental intervention' by social workers in nursing homes.

The strategies include reducing boredom, providing intellectual and physical stimulation, exercise, calming music, bringing in pets for therapy and improving how the staff approaches and talks to dementia patients.

At the Margaret Teitz Nursing and Rehabilitation Center in Queens, social workers do life reviews of patients to understand their interests, lifestyle and former occupations.

“I had a patient who used to be in fashion,” said Nancy Goldwasser, the director of social services. “So we got her fabric samples. And she’d sit and look through the books, touch the fabric, and it would calm her.”

But such approaches are time consuming, they do not help all patients, they can be prohibitively expensive and they will be more difficult to provide as Alzheimer’s continues to increase.

Watch the Health Implications of Caregiving Satellite Broadcast

Next Wednesday, June 25th, from 1-2:30pm ET, the U.S. Department of Health & Human Services and the Centers for Medicare & Medicaid will sponsor a satellite broadcast, Health Implications of Caregiving. Attendees will:

• Learn about the impact caregiving is having on your health.


• Learn simple tips to preserve your health while caring for a loved one.


• Hear about programs specifically developed to support you.

Learn more here.

Physical Functioning Better Predictor of Death than Disease Among Elderly

The July 2008 issue of the American Journal of Public Health includes a study that shows that in people 80 and older, limits on a person's physical functioning are a better predictor of death within five years, than the presence of chronic diseases. The researchers, from the San Francisco VA Medical Center, looked at data from 19,430 participants from an ongoing National Institute on Aging. For those aged 50 to 59, chronic disease conditions were better indicators of mortality than functional measures. In older participants, the results shifted and functional limitations, became a better predictor.

Sei Lee, MD, MAS, a geriatrics researcher and assistant adjunct professor at UCSF believes there are two possible causes of the change.

The first is what he calls “a selection or survival effect.” For a younger person, he explains, high blood pressure or diabetes “can be a very bad thing, with a likelihood of very bad consequences. But if you’re 80, and you’ve lived with high blood pressure for 30 years, it’s possible that it just doesn’t mean the same thing to you as it does to the average person –– that your body has adjusted to it in some way. And so it won’t have nearly as much bearing on your chances of living another five years as your ability to walk down the block unaided or manage your own medications without help.”

Another potential reason has to do with the “trajectory of decline among our oldest subjects,” he says. Younger people are more likely to have a clear single cause of decline, he says, such as a heart attack or pneumonia. Older people, by contrast, are more likely to decline slowly, not as a result of one catastrophic event but “slowly, month by month, week by week, for no clear reason that you can put your finger on. Functional measures are much more likely to capture that trajectory of decline.”

Lee notes that functional status is known to be an important component of quality of life for older people. “Most older patients will tell you that they are more afraid of losing their independence than they are of dying,” he says.

As a follow up to the current study, Lee says that “even though self-reporting is well-known to be a valid indicator of health status, it would make sense to replicate this work with a larger sample and an objective data set such as formal medical records.”

If his results are validated, he says, “I would strongly advocate that functional status become a standard component of medical records. It would be an important tool for policy makers, clinicians, and patients.”

FDA Adds Black Box Warning on Antipsychotic Medications for Dementia Patients; Morphine Sulfate Tablets Recall

The FDA has added a black box warning to conventional antipsychotic medications, citing an increased risk of death with their use among dementia patients.
From WebMD:

In 2005, the FDA warned that clinical trial data strongly suggested that newer "atypical" antipsychotics increase the risk of death in dementia patients. The agency required these drugs to carry its strongest "black box" warning on their labels.

Now, based on observational studies, the FDA warns that older antipsychotics also seem to increase dementia patients' risk of death. These drugs, too, will carry a black box warning.

We also wanted to share a voluntary recall of morphine sulfate tablets:

Ethex Corporation notified healthcare professionals of a voluntary recall of a single lot of morphine sulfate 60 mg extended release tablets (Lot No. 91762) due to a report of a tablet with twice the appropriate thickness. Oversized tablets may contain as much as two times the labeled level of active morphine sulfate. The lot was distributed by Ethex Corporation under an 'Ethex" label between April 16th and April 27th of 2008.

For any questions related to this action, please contact Ethex Customer Service (representatives are available Monday through Friday, 8 am to 5 pm CST): Telephone 1-800-321-1705.

MedPAC's June 2008 Report to Congress

As we noted yesterday, the Medicare Payment Advisory Commission (MedPAC), an independent Congressional agency, has released its June 2008 Report to Congress. Chapter 8 of the report is dedicated to an evaluation of Medicare's hospice benefit. The report contains considerable analysis of the who is receiving and giving hospice care, mainly from 2000 through 2005. Some highlights:

• In 2000, 27.3 percent of Medicare decedents used hospice. In 2005, that number had increased to roughly 40 percent.


• The average length of stay in hospice has increased over this period. Between 1998 and 2000, the average was 48 days; between 2000 and 2005, it was 67 days.


• The provider mix of hospices has changed since 1983, when Medicare implemented the hospice benefit. In 1983, most providers were nonprofits affiliated with religious or community organization. Today, for-profit hospices are the majority.


• A small but growing number of hospice are exceeding the "hospice cap," the aggregate per patient limit on Medicare payments for hospice services. [Payments are made on a per diem basis across four general types of care.]


• In 2002, 2.6 percent of hospices exceeded the cap. In 2005, 7.8 percent exceeded it.


• Spending on the Medicare hospice benefit has increased due to greater numbers of beneficiaries, as well as longer hospice stays. The longer stays are consistent with the growth of noncancer diagnoses (such as Alzheimer's disease and dementia.)


• The report concludes a combination of provider characteristics (for-profit vs nonprofit), patient diagnoses, and market conditions were correlated to the likelihood that hospice would exceed the cap. The number of hospices exceeding the cap is still small, just under 8 percent of hospice providers in 2005. In addition, hospices exceeding the cap were more likely to be for-profit, freestanding facilities with smaller patient loads.


• Other market forces involved in longer lengths of stay may include: whether a hospice is a new entrant into the market, the number of Medicare beneficiaries per hospice provider, patients wanting the benefit for longer periods, and the financial incentives of the current payment system.


• Growth in hospice use was higher among women than men, higher among whites and blacks than those of Hispanics and Asian heritage. Use by Native Americans doubled between 2000 and 2005. Use also grew the fastest for the oldest patients, those 85 and older.

Items we noted:

• The report details the financial incentives for hospices to provider longer stays, but also states a lack of data does not allow them to "determine conclusively whether the payment system encourages or discourages the admission of certain patients to hospice on the basis of their profitability."


• It highlighted that CMS does not currently require hospices to report quality of care, but that the new Conditions of Participation will need to provide quality assessment. The report points out the challenges of implementing quality assessment and discusses options.


• The report makes this statement, "The hospice payment system should be changed to minimize incentives that make some patients more profitable than others, so that access is equal for all Medicare beneficiaries who wish to use the benefit." The report does not provide suggestions for an alternate payment system, however.

Bright Lights, Fewer Symptoms for Dementia Patients

A study reported in the Journal of the American Medical Association showed that putting brighter lights in nursing homes helped reduce cognitive declines and depression among dementia patients. The New York Times article also reports that researchers "also found that giving dementia patients the hormone melatonin could help improve their sleep and mood, but only in conjunction with the increased lighting."

Round-Up: Awards, New Caregiving Advice Column, MedPAC report and more

This week's collection of articles, posts, and items of interest from around the web:

• The Jefferson Awards, honoring contributions through public and community service , announced its 2008 winners, including the founder of a hospice in rural Mississippi.


• The Rosalynn Carter Institute for Caregiving is now taking nominations until August 15 for its 2008 Leadership in Caregiving Award.


• Judy Bachrach, journalist and contributing editor at Vanity Fair, had launched a new website on online advice column on dying well


• The Medicare Payment Advisory Commission (MedPAC), an independent Congressional agency, has released its June 2008 Report to Congress. There is a lot of information about the Medicare hospice benefit in the report. HFA will share highlights in a future post.

Increased Coverage of End-of-Life Discussion Study

Last month we shared a Chicago Tribune article about a study funded by the National Cancer Institute and the National Institute of Mental Health on whether physicians discuss end-of-life issues with patients dying of cancer. The study was presented at the annual meeting of the American Society of Clinical Oncology and showed just over a third of patients could recall having discussed end-of-life issues with their doctor.

That study is getting increased media attention this week due to the passage a bill by the California Assembly that requires health care providers to give dying patients complete answers about their end-of-life options. The bill still must pass the in the state Senate.

This AP article appearing on MSNBC includes several doctors' reaction to the study. An LA Chronicle article from Saturday also highlights the groups that support and oppose the bill. Compassion & Choices, which supports the bill, points out that a group opposing the bill, the Northern California Oncologists, appear to be in contradiction with the study, as well as the result of another study regarding the use of chemotherapy at the end-of-life (which we posted last Friday.)

Review of State Legal Barriers to Using POLST orders

Researchers examined legal barriers to implementing POLST (Physician Orders for Life-Sustaining Treatment) forms in states other than Oregon, West Virgina, and Washington. The POLST form helps translate a patient’s wishes for life-sustaining treatment into clear medical directions for health care workers. While it is generally recommended that everyone have some form of advance directive, such as a living will or health care proxy, the POLST form was developed specifically for patients who already have a serious illness.

This legal review appeared in the March 2008 Journal of Law, Medicine & Ethics and is available from the Oregon Health & Science University (OHSU) website. The research was conducted between October 2005 and May 2006. At that time parts of Wisconsin, Pennsylvania, and New York were also using a type of POLST form. Additionally, Hawaii, Idaho, North Carolina, and Tennessee began using POLST-type orders after research concluded in December 2006.

See the OHSU website for more information about individual state coverage.

Last week the California Senate Health Committee voted to approve a bill which will allow patients whose life expectancy is less than one year to utilize a POLST form.

Chemotherapy Guidance at the End-of-Life

Researchers from the Virginia Commonwealth University Massey Cancer Center examined the use of chemotherapy given to cancer patients in the U.S. at the end of life. In a news release about the research, which appears in the Journal of the American Medical Association (JAMA), the authors conclude chemotherapy may not be the best solution and suggest discussing hospice care with patients. From the news release:

Taking several other factors into account, chemotherapy toward the end of life may not be the best solution for many incurable patients. These factors include:

• Chemotherapy may have negative side effects, compromising the patients’ sense of well-being


• People in hospice not receiving chemotherapy live longer


• Chemotherapy prevents patients from going into hospice


• One in three families is bankrupted by serious illness


• Patients receiving chemotherapy are likely to miss opportunities for spiritual growth, quality family time, travel, financial transitions and to pass on a “life review” for future generations.

The authors show that chemotherapy is given near the end of life in the United States more than in other countries. The contributing factors include:

• A lack of honest information about prognosis


• Hype from drug companies and national research organizations


• People not believing their doctors or having a different perspective


• Doctors and patients wanting to avoid frank discussion about the issue


• Doctors in the United States are paid to prescribe chemotherapy; they are not paid to counsel patients and help them prepare for a “good death.”

“As doctors we are taught to save lives, and much of our training and practice is geared toward that effort,” said Smith. “Patients and their families want and need more information to transition toward the best death possible. This article provides several helpful sections to identify the appropriate goals of chemotherapy, to transition to palliative or hospice care and to discuss prognoses in clear and effective manners with patients.”

The solutions Smith and Harrington present to the medical profession include:

• More honest communication from the beginning with patients


• Bring up hospice


• Ask people what they want to know, and tell them

Also see coverage of the research from USAToday and Pallimed.

Round-Up: Risk-of-Death Charts, Violent Death Rates, Obit Magazine and More

A collection of articles, posts, and websites from around the web this week.

• The Journal of the National Cancer Institute, published risk-of-death charts, offering the public way a simpler was to view health threats. The charts stress the three factors that most influence mortality, the person's age, gender, and smoking status. Read the news coverage from WebMD and the Associated Press.


• The New York Times reports on the high rate of suicides among violent death statistics. Over half of all violent deaths are the result of suicide, from 2005 data.


• An op-ed appearing in The Wall Street Journal by the Abigail Alliance for Better Access to Developmental Drugs, urges the Senate to pass a bill that would allow terminally ill patients access to experimental drug treatments.


• An article from The New York Times discusses the role of geriatric care managers.


• And last, Obit Magazine, which describes itself as a magazine that explores death as an integral part of life.

HFA to Address Diversity and End-of-Life Care

In May 2007, the US Census Bureau released information about the growth of minority populations in the United States. "About one in three U.S. residents is a minority," said Census Bureau Director Louis Kincannon. "To put this into perspective, there are more minorities in this country today than there were people in the United States in 1910. In fact, the minority population in the U.S. is larger than the total population of all but 11 countries."

Hospices and other organizations that care for people at the end of life are gaining an increasing awareness of the need to learn more about incorporating cultural competency into their care. HFA's 16th annual National Bereavement Teleconference will focus on Diversity and End-of-Life Care. The program, which will be broadcast Wednesday, April 29, 2009, will look at how diversity may influence end-of-life decision making, and the impact that culture may have at the time of death and during bereavement. One of the goals of the teleconference is to increase sensitivity by helping professionals acknowledge how their own cultural values and assumptions influence the delivery of care. The program will include a special examination of hospice care and diversity, including how hospices are reaching out to diverse groups and incorporating traditional practices and alternative therapies. The program will also discuss the challenges that may occur when culture considerations may cause ethical concerns or moral distress.

Racial Disparities in Health Care, Missing Cultural Needs

A study released Monday in The Archives of Internal Medicine, reported by The New York Times, examined the electronic medical records of 6,814 patients with diabetes in eastern Massachusetts between 2005 and 2007. The study found racial disparities in their treatment, even when it was by the same doctor.

The lead author of the study said in an interview that he attributed the differences less to overt racism than to a systemic failure to tailor treatments to patients’ cultural norms. The problem, said the author, Dr. Thomas D. Sequist, an assistant professor of health care policy at Harvard Medical School, may be that physicians do not discriminate in the way they counsel patients.

“It isn’t that providers are doing different things for different patients,” Dr. Sequist said. “It’s that we’re doing the same thing for every patient and not accounting for individual needs. Our one-size-fits-all approach may leave minority patients with needs that aren’t being met.”

For instance, he said, counseling black or Latino patients with diabetes to lower their carbohydrate intake by cutting rice from their diets may not be a realistic strategy if rice is a family staple.

“We may be listing fruits and vegetables that are part of one person’s culture but not another,” Dr. Sequist said. “We’re not really giving them information they can use.”

The study authors advise that doctors, and other members of the health care system, learn more about the minority communities they serve.

Younger People Are Becoming Hospice Volunteers

Don Aucoin at The Boston Globe reports on the rise in younger people volunteering to provide hospice care. Hospice volunteers tend to be seen as older.

But that profile is changing, as young people who saw what it did for their grandparents or other relatives step up to do what they can to ease the final days of other dying patients. There are other factors, of course, including Internet-savvy outreach by the hospices (which advertise on websites like Craigslist) and community-service requirements at colleges and high schools.

Some hospices are even seeing a surge in teen volunteers. Teenagers account for 10 percent of the Hospice of the Florida Suncoast's 3,000 volunteers. At the largest hospice organization in New England, Beacon Hospice, the number of volunteers in their teens and 20s has risen nearly 80 percent in the past year.

For more information on becoming a hospice volunteer, see the HFA website.

More on Hospitals Handling of Early Infant Death

Last month we posted an article about how two hospitals handle early infant death in Berks County, Pennsylvania. Earlier this week, Tampa Bay Online published two articles about a bereavement program, Cherished Moments, at Brandon Regional Hospital in Florida. One article discusses the program, which includes photographing the baby, and creating a box for mementos. The other article profiles the nurse, Laurie Van Damme, who began the program.

Patients Who Recall End-of-Life Discussions with Physicians Die More Comfortably

A study of 332 cancer patients who eventually died, reported at the American Society of Clinical Oncologists in Chicago last week, showed one-third recalled discussing the end of life with their doctors. Researcher Alexi Wright, MD, medical oncology fellow at the Dana-Farber Cancer Institute in Boston, reported that those patients were:

• 1.6 times more likely to enter a hospice in time to receive its benefits -- that is, to die as comfortable a death as possible. In the study, people who entered the hospice two months or more before death reported the best quality of life in their final weeks, Wright says.


• three times more likely to complete a do-not-resuscitate order and two times more likely to fill out a living will.


• no more likely to meet criteria for depression.


• no more likely to report being depressed, worried, anxious, or terrified when directly asked.

Use of a Fake Bus Stop to Keep Alzheimer's Patients Safe

Interesting item about senior centers in Germany that began using fake bus stops to keep Alzheimer's disease patients from wandering off. The patients wait at the stop to be taken home, and can be calmed by being invited to stop in for coffee while waiting for the bus. From the article, it is not clear if the centers would fit the description of a senior center or a nursing home in the U.S., but the idea has worked so well it is being replicated at other centers in Germany.

CMS Highlights Rights of Medicare Hospice Patients in Press Release

The Centers for Medicare & Medicaid Services (CMS) highlighted how patient rights are affected by the new hospice Conditions of Participation, which have been recently released. The new rule sets out a detailed list of patient rights.

Specifically, the rule says, patients who choose hospice, or palliative care, over curative treatment are entitled to such things as participation in their treatment plan; the right to effective pain management, the right to refuse treatment and the right to choose his or her own physician.

“As more patients and their families come to understand and select hospice care, we felt it was critical to outline what rights patients have to control the care they receive in their final days,” said Kerry Weems, acting administrator of CMS.

In addition, the press release noted these other changes to the regulations.

• A requirement that patient needs be initially assessed within 48 hours of electing the hospice benefit. The rule also requires that a comprehensive assessment occur within five days of electing the hospice and that updated assessments be done at least every 15 days thereafter.


• A requirement that each patient receive a full drug profile that examines issues ranging from the effectiveness of current drug therapies to potential drug interactions to drug side effects. A treatment team will consult with a qualified individual, such as a pharmacist, to ensure that drugs meet the needs of every hospice patient.


• A provision allowing a hospice to contract with another Medicare-certified hospice for nursing, medical social services, and counseling services under extraordinary or other non-routine circumstances, including travel of a patient outside of the hospice’s service area.


• Removal of a provision requiring an inpatient facility only providing respite care to have an RN on duty 24 hours a day. The patient’s needs, acuity and plan of care will drive the nursing and staffing requirements.

Heart Failure Patients Overestimate Their Life Expectancy

Researchers from Duke University Medical Center note that many heart failure patients overestimate their life expectancy, reports ScienceDaily. This is important because it can effect their decisions regarding treatment options.

The research showed that among 122 patients with heart failure enrolled in the Duke University Heart Failure Disease Management Program, the patients, on average, believed the would live about 40 percent longer than what accepted survival models predicted.

While the reasons underlying the phenomenon aren't clear, scientists say the finding may hold important implications about options such as high-end medical devices, transplantation or palliative care -- important decisions that have enormous impact on patients' quality of life and clinical outcomes.

Racial and Regional Disparities in Health Care Getting More Attention

The Robert Wood Johnson Foundation aims to reduce racial and ethnic disparities in health care, through a new $300 million program to improve care in 14 communities.

The New York Times reported on the program, along with a new study from Dartmouth that was commissioned by the foundation.

The study, by researchers at Dartmouth, examined Medicare claims for evidence of racial and geographic disparities and found that on a variety of quality indices, blacks typically were less likely to receive recommended care than whites within a given region. But the most striking disparities were found from place to place.

For instance, the widest racial gaps in mammogram rates within a state were in California and Illinois, with a difference of 12 percentage points between the white rate and the black rate. But the country’s lowest rate for blacks — 48 percent in California — was 24 percentage points below the highest rate — 72 percent in Massachusetts. The statistics were for women ages 65 to 69 who received screening in 2004 or 2005.

In all but two states, black diabetics were less likely than whites to receive annual hemoglobin testing. But blacks in Colorado (66 percent) were far less likely to be screened than those in Massachusetts (88 percent).

The role of race and culture plays in health care has been receiving a lot of media attention recently. HFA is in the process of planning our 2009 teleconference, which focuses on the impact of racial, ethnic, and cultural diversity in end-of-life care. We will post more information about the teleconference in upcoming months.

Update: Change in Language Provisions in the New CMS Hospice Conditions of Participation

Here is the CMS document, “Medicare and Medicaid Programs: Hospice Conditions of Participation.” We were alerted that the document contains some changes regarding language provisions from the previous conditions of participation. Addressing these language provisions may present a challenge for some hospices servicing diverse populations. HFA’s 2009 teleconference will focus on ways of understanding the impact of cultural diversity at the end of life.

From the CMS document,on p. 52, Section 418.52 [emphasis added]:

3. Condition of Participation: Patient’s rights (Proposed §418.52)

We proposed to replace the existing CoP, Informed consent, at §418.62, with a new patient rights CoP. The proposed patient rights CoP was divided into five standards. The first standard,”(a) Notice of rights,” would have required hospices to develop a notice of rights, including information about advance directives and the hospice’s controlled drug policies. Under the proposed requirement, hospices would have been required to present the notice of rights verbally (meaning spoken) and in writing to patients and families in a language and manner that they are able to understand. This would have occurred before the hospice furnished care to a patient and family. Hospices would also have been required to document the patient’s or representative’s understanding of the notice of rights.

In standard (b), “Exercise of rights and respect for property and person,” we proposed that the patient would be able to exercise his or her rights, be respected, voice grievances, and not be subjected to discrimination or reprisal. We also proposed that hospices would investigate and report all alleged violations of patient rights, and take appropriate corrective action where necessary.

[continued]

Comment: A majority of commenters on this issue expressed concern about the proposed requirement that hospices provide a notice of the patient’s rights and responsibilities verbally, as well as in writing, in a language and manner that the patient would understand. Many of these commenters requested that hospices not be required to furnish written notices in obscure or otherwise uncommon languages. Other commenters requested that the choice of language(s) used to communicate be left to the discretion of each hospice or that the communication be done in accordance with guidance issued by the Department of Health and Human Services (HHS) related to Title VI of the Civil Rights Act of 1964, Prohibition Against National Origin Discrimination Affecting Limited English Proficient Persons. Still other commenters requested that we specifically recognize in the regulation that interpreters, family or otherwise, be permitted to facilitate communication of the notice of rights to patients and families.

Response: We recognize that this is an area of concern for hospices, as it may be challenging for hospices to communicate with patients who speak languages other than English. However, ensuring that patients are aware of their rights and how to exercise them are vital components of improving overall hospice quality and patient satisfaction. If patients are unaware of their rights or the methods and protections available for exercising those rights, then hospices cannot expect to receive valid feedback from patients on ways to improve their services. Without the valid feedback, true quality measurement and improvement cannot exist. Therefore, we believe it is in the interest of patients and hospices to ensure that all patients, regardless of their communication needs, are informed of their patient rights.

Even so, we are sensitive to the concerns of hospice providers. The HHS guidance on Title VI (August 8, 2003, 68 FR 47311) applies to those entities that receive federal financial assistance from HHS, including hospices. This guidance presents four areas for hospices to consider when developing and implementing strategies to meet the needs of limited English proficient persons. The guidance recognizes the role of professional translation services, as well as family and friends of the patient, in communicating important information to patients, including the notice of rights. Hospices are already expected to comply with the HHS guidance, and doing so will enable them to comply with the requirements of the proposed rule.

Using family and friends as translators should not be the communication plan of choice for the hospice for its patients who do not speak English, unless the patient specifically requests this approach. Hospices should make all reasonable efforts to secure a professional, objective translator for hospice-patient communications, including those involving the notice of patient rights. Furthermore, hospices should make all reasonable efforts to have written copies of the notice of rights available in the language(s) that are commonly spoken in the hospice’s service area. For those patients who speak uncommon languages in areas where professional translators for those languages are not readily available, using family and friends of the patient is an acceptable option.

[continued]

Comment: Some commenters asked that we clarify what type of documentation would be necessary to demonstrate that the hospice provided patients with a notice of rights and that the patient or representative demonstrated an understanding of the rights. A majority of commenters noted that language in the proposed rule, “demonstrated an understanding of,” was imprecise and difficult to measure.

Additional commenters suggested that language from the home health agency CoPs at 42 CFR 484.10 should be used in the hospice CoPs. Section 484.10 states that “the HHA must maintain documentation that it has complied with the requirements of this section.” This language, commenters noted, would allow hospices to determine in their own policies how the documentation would be handled. Several other commenters suggested that hospices be required to obtain the patient’s or family’s signature, confirming that they received the notice of rights.

Response: We agree that a more precise requirement will help hospices ensure that patients and families are fully informed about the notice of rights. Furthermore, we agree that more precise language will help hospices ensure that they are in compliance with our documentation requirements. Therefore, this final rule at §418.52(a)(3) states, “The hospice must obtain the patient’s or representative’s signature confirming that he or she has received a copy of the notice of rights and responsibilities.”

Later, on p.564 CMS calculates the burden of compliance for hospices of the above [emphasis added]:

Condition of participation: Patient’s rights (§418.52)

Section 418.52(a)(1) states that a hospice must provide the patient or representative with verbal and written notice of the patient’s right and responsibilities. The notification must be presented in a manner and language consistent with the patient’s ability to comprehend the information. Section 418.52(a)(2) requires a hospice to inform and distribute written information on its policies concerning advance directives. The information must include a description of applicable State laws. Section 418.52(a)(3) states that a hospice must obtain the patient’s or representative’s signature confirming that he or she has received a copy of the notice of rights.

The burden associated with the notification requirements contained in §418.52(a) is the time and effort necessary for a hospice to: develop the notification form; provide, both verbally and in writing, the patient or the patient’s representative with a notice of patient’s rights; inform and distribute information pertaining to its policies on advance directives and applicable State laws; obtain signatures from the either the patient or representative confirming receipt of a copy of the notice of rights. There are 2,872 hospices that must comply with the aforementioned requirements. We estimate that it will take each hospice 8 hours to develop the form and 5 minutes to meet the requirements in §418.52(a)(1-3). We estimate that each hospice will on average provide 303 notifications per year for a total one time burden of 22,976 hours and annual burden of 72,518 hours.

CMS also requires communication with patients and representatives regarding the safe use and disposal of controlled drugs be done in a language and manner they can understand, p. 587, Section 418.106(e) [emphasis added]:

Section 418.106(e) discusses the standard for labeling, disposing and storing of drugs and biologicals.

Specifically, §418.106(e)(2)(i) states that a hospice must have a written policy for the management and disposal of controlled drugs in the patient’s home. As required by §418.106(e)(2)(i)(A), a hospice must provide a copy of the written policy required in §418.106(e)(2)(i) to the patient, and his/her representative and family. Additionally, the hospice must discuss the hospice policy for managing the safe use and disposal of controlled drugs with the patient or representative and the family in a language and manner they can understand to ensure that these parties are educated regarding the safe use and disposal of controlled drugs, as required by §418.106(e)(2)(i)(B).

Section 418.106(e)(2)(i)(C) requires a hospice to document in a patient’s clinical record that the written policy for managing controlled drugs was provided and discussed. Section 418.106(e)(2)(ii) states that a hospice maintain current and accurate records of the receipt and disposition of all controlled drugs.
The burden associated with the requirements contained in §418.106(e)(2) is the time and effort necessary to provide a written copy of the policy on the management and disposal of controlled drugs in the patient’s home to the patient representative and family. There is also some burden associated with the hospice explaining the policy to the patient or representative and the family. In addition, there is a burden associated with documenting in the patient’s clinical record that the written policy for managing and controlled drugs was provided and discussed. We believe the burden associated with the aforementioned requirements is exempt from the PRA under 5 CFR 1320.3(b)(2), as they are part of the usual and customary business practice for hospices.

Providing Hospice Care in New Jersey

The Star-Ledger (NJ) has a piece discussing hospice care in New Jersey. Reporter Carol Ann Campbell addresses the challenges of providing hospice care in a state that treats terminal illnesses very aggressively.

Hospice workers say they often feel they are swimming against the current in New Jersey, where chronically ill patients are more likely to die in the hospital or intensive care unit than patients in any other state.

. . .

Donald L. Pendley [president of the New Jersey Hospice and Palliative Care Organization] said the average hospice patient in the United States spends 25 days in hospice. In New Jersey, the figure is 17. The Dartmouth Atlas of Health Care, a national database, found that chronically ill Medicare patients in New Jersey spend 30 percent less on hospice in the last six months of life than the national average.

The article describes the care received by patients at a new residence hospice, but does point out that most hospice care is received at home.

New Pediatric Palliative Care Team in Omaha

An article from the Omaha World-Herald describes the new pediatric palliative care team at the Children's Hospital in Omaha. The team consists of five members, known as the Hand in Hand program, and includes a physician, social worker, chaplain, nurse, and a child life specialist.

The program began as a test project in October 2006 and became a unit of Children's Hospital last fall. The team has worked with 47 families, 13 of which have since lost their child.

Hand in Hand provides "pediatric palliative care" -- team members listen to, comfort and assist families that face life-and-death decisions for their children. Team members help families make plans and goals for those kids.

What a Hospice Volunteers Can Do For Patients

Here's a nice article about the role one hospice volunteer has played in the lives of the terminally ill, from The Post-Crescent (WI).

Read more about what volunteers contribute to hospice care.

Facing Cancer, Facing Expectations

We saw an interesting article in the New York Times about the expectations placed on cancer patients to face their illness with optimism. Also check out the blog comments.

Dr. Gary M. Reisfield, a palliative care specialist at the University of Florida, Jacksonville, believes that the language used by cancer patients and their supporters can galvanize or constrain them. Over the last 40 years, war has become the most common metaphor, with patients girding themselves against the enemy, doctors as generals, medicines as weapons. When the news broke about Senator Kennedy, he was ubiquitously described as a fighter. While the metaphor may be apt for some, said Dr. Reisfield, who has written about cancer metaphors, it may be a poor choice for others.

“Metaphors don’t just describe reality, they create reality,” he said. “You think you have to fight this war, and people expect you to fight.” But many patients must balance arduous, often ineffective therapy with quality-of-life issues. The war metaphor, he said, places them in retreat, or as losing a battle, when, in fact, they may have made peace with their decisions.

Providing Spiritual Support to the Dying

This Sacramento Bee article discusses an end-of-life seminar attended by more than 50 local faith leaders.

Hospice College of America (a distance-learning subsidiary of HFA) offers an online course, Engaging Faith Communities in End-of-Life Care. The course is for clergy and faith leaders designed to enhance understanding of issues related to end of life care, and to provide techniques to help clergy and lay leaders to assist members of their congregations who are facing an end-of-life medical crisis. This course was developed by Hospice Foundation of America in cooperation with the Florida Department of Elder Affairs and The Center on Aging at Florida International University.

Nurses Surveyed for Their Impressions of Hospice Volunteers

The Hospice and Nursing Homes blog pointed us to a study that appeared in the April 10 American Journal of Hospice and Palliative Care regarding the views of nurses towards hospice volunteers. Although the survey set was small, 50 nurses involved in hospice and home care, the nurses were asked about their knowledge and perception of hospice volunteers, appropriate tasks for volunteers, and the value of volunteers.

Fifty-three percent of the nurses felt that volunteers should know patient medical information, and 77% thought that volunteers should have the opportunity to provide input regarding patient care. Also, 75% of the nurses felt that volunteers made their jobs easier, and 56% felt that volunteers should be included in team meetings. When asked to list the topics covered in a hospice palliative care volunteer training program, 73% of the nurses indicated that they were not sure or did not know what topics were covered, indicating a lack of knowledge regarding volunteer training.

Black Cancer Patients Choose More Aggressive End-of-Life Care

Today, at the annual meeting of the American Society of Clinical Oncology in Chicago, researchers from the Dana-Farber Cancer Institute in Boston will report on findings showing black patients with advanced cancer were more likely than whites to die in a hospital intensive care unit. Researchers surmise this shows a greater preference for life-extending treatment even at the end-of-life.

"This is the first study focused on black/white differences that prospectively asked [terminal cancer patients] what kind of care they wanted at the end of life, and then documented the kind of care they actually received and the place of their death," said Elizabeth Trice, MD, PhD, of Dana-Farber, lead author.

Although they ruled out a number of possible explanations for the black/white differences, the investigators weren't able to identify precisely why blacks tended to prefer more-aggressive care.

"There is something different about the way black patients and white patients approach the end of life," Trice said, which may be based in cultural attitudes, religious beliefs, and how thoroughly they have been informed about and comprehend their prognosis, among other things.

Data on the preferences was obtained from the Coping with Cancer study led by Holly Prigerson, PhD, director of the Center for Psycho-social Oncology and Palliative Care Research at Dana-Farber and an associate professor of psychiatry at Harvard Medical School. That study is recruiting 800 cancer patients and their informal caregivers, such as family members.

The researchers recorded the location of death for 231 white and 61 black patients who had stage IV metastatic cancer, and who had been interviewed when they entered the study. Black patients were over four times more likely to die in a hospital ICU than white patients, they found.

Memorial Day Follow-Up: Hospice Benefits for Veterans

This article from the Home Town Journal (FL) describes the hospice care benefits veterans can receive under the Veterans’ Health Care Eligibility Reform Act of 1996 and the types of services Florida hospice provide veterans and their families.