Culturally Sensitive Practices Highlighted at Minnesota Hospital

Sunday's New York Times included an in-depth piece examining how Hennepin County Medical Center in Minneapolis is handling the challenges of providing medical care to diverse immigrant populations while providing culturally sensitive care. The main article, by Denise Grady, is accompanied by a slide show and video segment. A related piece profiles a neighborhood clinic for Hispanic immigrants and includes an excellent video segment.

The hospital spends $3 million a year on interpreters covering 50 different languages to help serves many diverse cultural groups. Each group has unique cultural beliefs about life and death, medical treatment and illness. The article highlights some instances of providing culturally sensitive care:

On an afternoon in late September, Dr. Pryce and Dr. Harare, the interpreter and patient advocate, emerged from an examining room looking tired but wryly triumphant.

They had just finished negotiating, politely but persistently, with a patient who — just as politely but persistently — had refused to allow any blood tests because it was the holy month of Ramadan and he feared that having blood drawn might be a sin.

Finally, they telephoned an imam, who declared there was no sin. The blood was drawn.

Dr. Pryce says one of the great joys of working in a hospital like Hennepin is finding ways to bridge such cultural divides — and knowing that his patients are better off because of it.

Hospice Foundation of America's Year 2009 initiative focuses on these same challenges faced by professionals who provide care at the end of life, from the time of terminal diagnosis all the way through the grieving process. HFA's teleconference program, Diversity and End-of-Life Care, will be shown twice on April 29 -- first live via satellite and webcast at 1:30 p.m. EDT, and then replayed at 7:30 p.m. EDT (webcast only).

Three hours of Continuing Education Unit credits are available for a wide range of professions, including nurses, social workers, physicians, psychologists, licensed counselors, nursing home administrators, clergy, EMS personnel, EAP professionals, and funeral directors.

Find a site to watch the broadcast near you, or register to host the teleconference in your community.

Caring for the Dying During a Natural Disaster - Flooding in North Dakota and Hospice

Cheryl Link, LSW, CT from the Hospice of the Red River Valley asked us to share this message:

Hello, I am sure that some of you have heard about Fargo, ND in the news lately. We are fighting the highest flood waters that the area has ever experienced. Schools and colleges in the area have been filling sandbags sandbagging since Monday. Many areas of Moorhead, just across the river are also affected. Several developments in Fargo-Moorhead and surrounding towns are being asked to evacuate. Several people have been rescued by helicopter. Please keep this area in your thoughts these next few weeks. Thanks.

Caring for the dying is difficult under normal circumstances; hospices face especially daunting challenges during natural disasters. While hospice staff work to help these families, many of them are facing evacuation and potential loss of property at the same time.

Dr. Kenneth Doka, HFA’s Senior Consultant, traveled to North Dakota in 1997 after significant flooding had occurred there. He conducted workshops with hospice staff, school personnel, and with employers, to share ideas and resources about dealing with the tangible and intangible losses that had impacted so many. During that visit, and in watching responses to other natural disasters that have happened since, we are reminded of the vital role that hospices can play in their communities, in helping people cope with the myriad losses that occur as a result of natural disaster. HFA will continue to serve as a resource to communities in North Dakota and keep them in our thoughts.

Amy Tucci, President and CEO, Hospice Foundation of America

March 27 Round-up: Palliative Care Podcast, DNR Uniformity, the Hospice Model, Hospice Certification, and Caregiving Advice

• The University of Texas' MD Anderson Cancer Center offers a weekly podcast series called "Cancer Newsline". This week's podcast focused on palliative care and the "ways their research programs assess and manage severe physical or psychosocial symptoms in advanced and terminal cancer patients."

• This article from the Lexington Herald-Leader (KY) addresses confusion in how Do Not Resuscitate (DNR) orders are carried out in the state of Kentucky, and the need for more uniform procedures.

  In Kentucky, groups are debating whether guidelines for adhering to a patient's wishes should be the subject of proposed legislation in the General Assembly or simply added to existing administrative regulations.
  
  Bernie Vonderheide, president of Kentuckians for Nursing Home Reform, attended the meeting last week with Karem and Reynolds. Vonderheide said that any solution should be mandated so that it will be followed uniformly. He said he likes the idea of a uniform color-coded wrist band, but is open to other ideas.
  
  Tim Veno, president and CEO of the Kentucky Association of Homes and Services for the Aging — a group that represents long-term care providers — was also at the meeting and is asking that a panel of professionals come up with recommendations.
  
  He doesn't think a new law is necessary if best practices are followed.

• The writer of the "Life as a hospice patient" blog, Judi Chamberlin was interviewed by The Boston Globe:

  CHAMBERLIN: The hospice model puts the patient in the center. What matters is what the patient wants. And then the various people who are the staff - the nurses and social workers and others - are there to support their choices. They're not there to impose their ideas.

• The Martha's Vineyard Times has written a few articles that address the hospice industry. Hospice of Martha's Vineyard has operated as a nonprofit, non-Medicare certified hospice for 28 years. Now, the nonprofit Vineyard Nursing Association plans to offer a Medicare-certified hospice benefit in 2010. The latest article in the paper addresses the viewpoints of each organization towards the benefits and drawbacks of being Medicare certified.
  

• Dale Russakoff writes in today's New Old Age blog that over the years she carried for her ailing mother, different people would offer her advice that helped her in her new role of caregiver.

  Anyone who cares for an aging parent gets no shortage of unsolicited advice. But every now and then, one comment resonates — and helps, again and again.

HFA Interviews Claire Lavin: Grief and Loss Challenges for those with Developmental Disabilities

Claire Lavin is a professor of psychology at the College of New Rochelle in Westchester County, New York. A licensed clinical and school psychologist, she works with children and adults with disabilities in facilities and school districts in the greater New York City region. She has written articles and presented papers on older adults with disabilities. Dr. Lavin's chapter, "Persons with Intellectual Disabilities: Facing Dying and Loss" appears in HFA's upcoming 2009 teleconference companion book, Diversity and End-of-Life Care.

Why include persons with intellectual or developmental disabilities in a discussion of diversity and culture?

A. Healthcare professionals have traditionally not had a great deal of experience with this population. In the past, many people with developmental disabilities died at a relatively early age; with changes in lifestyle and medical treatment, the life expectancy of this population has risen. In addition, people with developmental disabilities are now more visible. Rather than living in institutions, many now live and work in the community.

What are some common misconceptions about persons with developmental disabilities?

A. We come to understand people by our experiences with them. Without experience, stereotypes tend to lead us. But anyone who has spent time with persons with developmental disabilities comes to realize that the commonalities between people are greater than the differences. They have needs, hopes, and fears— just like the rest of us.

Ironically, I am finding that as “healthy” people age, we actually become more like those with developmental disabilities. Older people may face cognitive impairment, such as Alzheimer’s disease, or sensory impairment that affects communication and emotional responses; there may be cardiac problems and other health issues that are similar to those experienced by persons with developmental disabilities. People with disabilities have typically been somewhat “devalued” in our society, and unfortunately that may often be the case with our senior population as well.

What stereotypes exist in connection with the areas of dealing with loss and grief?

A. A common stereotype is that persons with developmental disabilities do not experience loss or react to grief. In reality, the reactions to pain and loss are very similar. However, persons with developmental disabilities may not communicate or express these reactions in the same ways, and that difference can lead to misunderstanding and even a lack of emotional support. For instance, irritable, non-compliant behavior after a loss may be the way a person with communication impairments expresses their grief and need for emotional support. I think all too often caregivers do not interpret these signals correctly and the griever is not supported.

What are some of the issues of grief and loss that may pose particular challenges for those with developmental disabilities?

A. A hallmark of developmental disability is a lack of understanding of abstract concepts. So understandably, “big” concepts, like dying or loss, which can be difficult for anyone to grasp, can be additionally challenging. One critical role that both families and disability caregivers can play is to begin to prepare the person with the disability before illness or death is imminent. Use the changing of the seasons as a way to talk concretely about the cycles of nature and of life. The birth of a baby is a concrete example of the beginning of life, which helps express the concept of beginning and endings. A scene of death or a funeral in a movie or a television show can be used to start the conversation.

Do these suggestions apply primarily to adults with developmental disabilities, or do you suggest using them with children as well?

A. I believe that, like vaccinations, repeated exposure to these concepts is the “best medicine.” There is a strong tendency to overprotect those with developmental disabilities, and that is especially true with children. But the worst thing that can happen is for someone’s first experience with death to be that of a parent. Giving children some experiences with death, whether through being included in a funeral ritual, discussions like the ones mentioned above, or participating in some form of memorialization, teaches them that yes, sad things happen and people die, but people cope and support is there.

What may be some specific areas of concern for families and caregivers who are not comfortable exposing these children to discussions of grief and loss?

A. Again, one stereotype has been that persons with developmental disabilities do not actually experience loss, which we know is not the case, or that they just can’t understand the concept. Many people with developmental disabilities will react very strongly to these situations, but those reactions can be unsettling, as they are often very blunt. One example was a young man who came to a family member’s funeral and asked, in a loud voice, “Why is he in that box?” This is another example where preparation can be so critical—to talk through what the experience might be like, what they will see, etc.

Are there any additional concerns in helping adults with developmental disabilities deal with grief and loss?

A. The most common complaint that I hear from adults with developmental disabilities around this issue is that people have not taken the time to really listen to their expressions of grief. Just like in any situation when a death occurs, there is an initial flurry of activity and attention—there are funerals, cards, family gatherings, but then “life goes on.” But of course, as is normal for anyone experiencing loss, the grief is still there. Unfortunately, persons with developmental disabilities may not have easy ways to express these emotions, so caregivers may not understand that behaviors may in fact be expressions of loss. If the person is not able to express him or herself verbally, it may be even more difficult to understand. It is critical that persons with developmental disabilities have support systems in place to help them cope with normal grief reactions, and that caregivers are aware of the loss and understand how to help. Hospices can be great resources for bereavement support and information.

As people with developmental disabilities live longer, what advice do you have for healthcare professionals who may have had limited experience in working with adults with developmental disabilities, especially when facing end-of-life situations?

A. One critical piece of advice is that healthcare professionals need to work hard to connect with the people who have been providing care for the individual with a developmental disability. This may mean the family caregiver, or it may mean a professional caregiver--generally, persons with developmental disabilities have not lived independently, but have been in the care of someone else. These caregivers have likely developed ways to communicate and understand responses to emotional and physical pain. Perhaps as importantly, they have developed methods of soothing the person they are caring for, which may often involve a tactile response.

Challenges certainly exist for the healthcare provider when caring for this population. Professional caregivers who have been working with the individual may feel “territorial”, because their experiences and understanding of their clients has developed over time. Family caregivers may have developed a mistrust of the healthcare system over many years.

At the same time, misconceptions and barriers exist on the part of these caregivers as well. People with disability training have traditionally not been taught about death and dying, so while their experiences are a critical component of care, they may not be prepared to help their client face illness and loss. This is why strong partnerships between those who work in the developmental disability field and those who work in end-of-life care are so critical. Hospice personnel have been more open to these partnerships than other healthcare professionals, but there is still work to be done.

At the end of life, those commonalities we discussed come in to play. Most persons facing death want to be sure their wishes are respected, and that comfort and quality of life are the priority. What are some ways to ensure that these issues can be addressed for adults with developmental disabilities?

Again, the focus on concrete concepts and responses can be useful. So often, it is a matter of asking simple questions—who do you want to be with you? Do you want the lights on all the way or turned down some? Is there music that you like to hear? Are you more comfortable on your right side or your left? These questions, and honoring the responses, gives that person some power over what they can control within the situation. Healthcare professionals must be willing to listen to these answers and respond accordingly. This is where open communication and partnership between long-time caregivers and end-of-life professionals will be critical. Measurements of “quality of life” can be difficult to make, but allowing the person with the disability to express what he or she wants can give a great deal of insight and bring a great level of comfort and quality.

Podcasts Available on Death and Dying

Thanks to the Medical Futility blog for posting this information.

Podcasts from a professor of medical sociology at Harvard, Nicholas Christakis, are available here . The class, Life & Death in the USA: Medicine in Disease in Social Context, includes three lectures on end-of-life care.

• The Nature of Dying in the U.S.
  
• The Role of Prognostication in End-of-Life Care
  
• Selected Ethical Aspects of End-of-Life Care
  

From the class description:

We will explore the nature of dying in the U.S. and what might be done to improve end-of-life care. We will consider the nature of a good death, how death affects family members, and where death occurs. We will examine how social policy or clinical arrangements affect the experience of dying. We will especially focus on the role of physician decision-making and on ethical aspects of terminal care, including decisions about euthanasia and life support withdrawal. During this set of sessions on the care of the terminally ill, we shall also begin to consider the process by which physicians are socialized to their role as doctors. How does physician training influence health care delivery and patient experience?

Effective Hospice Care in Oregon

On Monday, an article by Steven Ertelt on LifeNews, suggested that hospices in Oregon were being unduly influenced by the Compassion & Choices organization and their support of Oregon's Death with Dignity Act. The Oregon Hospice Associationhas responded to the article with the following statement:

A March 16, 2009 LifeNews article by Steven Ertelt arrived at precisely the wrong conclusion about the impact of hospice care on the Oregon Death with Dignity Act. The article quotes Wesley J. Smith, saying that hospice has been "infiltrated" by Compassion and Choices, an organization to expand choice at the end of life. Nothing could be further from the truth.

Enrollment in hospice care is considered to be a primary reason why so few Oregonians avail themselves of the legal Death With Dignity option. A research study completed in 2002 and which appeared in The New England Journal of Medicine, found that an explanation of the very low rate of assisted death may be the high quality of care provided by Oregon's hospices. Moreover, only 1/2 of 1% of patients who inquire about using the Death with Dignity Act, use the provisions of the law.

Hospice care provides patient-centered end of life care; care is based on the individual patient and their family. Hospice's interdisciplinary team approach ensures that pain and other physical symptoms are addressed as well as emotional, social and spiritual issues.

Hospices honor patient's wishes within the confines of the law. Hospices are by federal regulation, non-denominational. Hence, individuals' beliefs are respected.

"I find this attack on hospice care to be disappointing", said Deborah Whiting Jaques, the executive director/CEO of the Oregon Hospice Association. "Statements like these which are critical of hospice care can have the effect of discouraging individuals, particularly those in the faith community which Wesley Smith represents, to use hospice services. Such comments do a disservice to terminally ill Oregonians and their families . . .”

Hospice Foundation of America agrees.

March 20 Round-up: Last Wishes, Pediatric Hospice and Palliative Care, National Social Workers Month, and Talking about Dying

• This short video from The Boston Globe shows an 82-year-old hospice patient taking part in a square dance.

• Alive Hospice honors National Social Workers Month by sharing why their social workers love their jobs.

In Pediatric Hospice and Palliative Care News:

• Ohio starts a free telephone support service for pediatric palliative care, to help serve more rural areas of the state. The Comfort Line is a medical advice and referral service provided by Akron Children's Hospital with the assistance of the Ohio Pediatric Palliative Care and End of Life Network (OPPEN).

• This University of Florida News article discussed the success of a pilot pediatric paliative care program in Florida:
  

  Florida was one of four states selected to receive $3.2 million to develop a new model for pediatric palliative care and was the first to implement its program in 2005. Called “Partners in Care: Together for Kids,” this program allows children on Medicaid or the State Children’s Health Insurance Program to receive palliative care from the time they are diagnosed with a life-threatening condition, regardless of prognosis.

  . . .
  

  Prior to the program, between 7 and 11 percent of children who died in Florida received hospice services at the end of life, according to a study the researchers published in March in the Journal of Palliative Medicine. By contrast, about 30 percent of adults with cancer receive hospice care at the end of life, Knapp said.

  . . .

  Between 2005 and 2008, enrollment in the program, which is available in seven cities across Florida, increased from 80 patients to 468. Of those families, 85 percent reported they were pleased with the program, according to an article published in the Journal of Palliative Medicine in November.

Having the Talk:

• The New York Times Well blog includes a post from an oncology nurse writing about a family’s reluctance to accept their loved one is dying.

• New York times health columnist Jane E. Brody has written a book that urges people to talk about death while they are still healthy. She was interviewed by Tara Parker-Pope on the Well blog:
  

  Q. All of your earlier books have focused on staying well and nutrition. Why did you write a book about dying?
  
  A. I’m known for my work on healthy living. It occurred to me that all life eventually comes to an end no matter how healthfully you live. There is no cure for mortality. The better and the further in advance you plan for that end, the less traumatic it’s likely to be, not just for you but for those you leave behind.
  

• Hospice of Michigan has a campaign, "Have You Had the Talk?"

  This is The Talk nobody talks about.
  
  You already know about the talk about sex and the one about drugs and the one about planning for college, retirement, and your last will and testament. But what about The Talk that helps you and the people you love navigate a confusing and overwhelming medical event like a heart attack or stroke, cancer, a chronic illness like diabetes or Parkinson’s, or a gradual decline in health and independence that requires the assistance from someone you love?
  
  The Have You Had the Talk™ Campaign urges all adults to consider and choose the care they want if they ever need to rely on someone else for their medical care and decision making. The best time to plan and prepare is when there is no emergency, no crisis, no scrambling.

Study Examines Religion's Impact on End-of-Life Care Choices

A study appearing in the most recent edition of The Journal of the American Medical Association asked 345 advanced cancer patients how much they relied on religion to cope with illness. Researchers from Boston's Beth Israel Deaconess Medical Center and Dana-Farber Cancer Institute found that patients who identified themselves as more deeply religious, chose more aggressive end-of-life care. Compared to patients who were less religious, they were less likely to have done advanced care planning, and were three times more likely to use a mechanical ventilator during the last week of life.

Religions specified in the study were Catholic, unspecified Protestant, Baptist and other. According to WebMD Health News, the researchers stated that the association between religious belief and aggressive medical treatment:

. . . persisted after other factors such as race, coping styles of patients, and advance medical care planning were considered.

But Duke University Medical Center psychiatrist Harold Koenig, MD, is not convinced that race did not influence the findings. He says that earlier studies have shown that blacks and Hispanics are more likely to have aggressive medical interventions at the end of life than whites.

From the New York Times:

“People think that spiritual patients are more likely to say their lives are in God’s hands — ’Let what happens happen’ — but in fact we know they want more aggressive care,” said Holly G. Prigerson, the study’s senior author and director of the Center for Psychosocial Oncology and Palliative Care Research at the Dana-Farber Cancer Institute in Boston.

“To religious people, life is sacred and sanctified,” Dr. Prigerson said, “and there’s a sense they feel it’s their duty and obligation to stay alive as long as possible.”

Aggressive life-prolonging care comes at a cost, however, in terms of both dollars and human suffering. Medicare, the government’s health plan for the elderly, spends about one-third of its budget on people who are in the last year of life, and much of that on patients at the very end of life.

Aggressive end-of-life care can lead to a more painful process of dying, researchers have found, and greater shock and grief for the family members left behind.

Last year, HFA interviewed Gloria Thomas Anderson, MSW, an African-American international author and motivational speaker. Anderson teaches cultural diversity and social work practicum integration courses,and has written The African American Spiritual and Ethical Guide to End of Life Care. The interview touched on the role spirituality plays in the African-American community at the end of life.

Q. Why do you think that African-Americans have traditionally not used hospice care?

A. My answer is based on research and my own observation and experience. There is limited awareness of hospice care in the African-American community, and hospice has not been actively promoted within many African-American communities. But for those families who have experienced hospice, it can be a real revelation to learn about the kind of support hospice offers not just for the dying person, but also for the caregivers.

As we discussed, for many older African-Americans, there is a general mistrust of the healthcare system. They still remember the Tuskegee experiments and the heart-breaking impact. Unfortunately in our society, especially for older African Americans, the message conveyed to many was, “Why would anyone care if I lived or died?” Because of this mistrust, some African Americans traditionally have not gone to the doctor regularly and often don’t get treated in the early stages of an illness. So when they do finally arrive at the ER or the hospital, often in the later stages of an illness, it can be a great challenge for healthcare personnel to treat them and provide the full range of services available.

One important cultural consideration in the African-American community is the issue of spirituality and faith. Many African Americans believe strongly that God will heal them. But doctors play an important role, too; in many ways, they are seen as God’s “instrument” for that healing. So when faced with making decisions about end-of-life care, there’s a spiritual component—if you decide to stop treatment, are you somehow “playing God?” This dilemma can cause a great deal of spiritual anguish to patients and their families. And I think there’s a feeling that’s universal in times of illness—I’m not going to “give in” and I’m not going to “give up.”

For coverage of the JAMA study: see WebMD Health News; New York Times; USA TODAY; and Reuters.

HFA Welcomes New Members to the Board of Directors

Hospice Foundation of America (HFA) announces the addition of new members to its Board of Directors. JoAnne Reifsnyder, PhD, APRN is a Research Assistant Professor and Division Director at Thomas Jefferson University’s Department of Health Policy in Philadelphia and Robert Washington is Vice President of Counseling Services at Montgomery Hospice in Montgomery County, MD.

“Hospice Foundation of America is pleased to have experts Dr. Reifsnyder and Dr. Washington joining its board. They bring to HFA years of experience in hospice and palliative care, grief and bereavement, and end-of-life care, both from an academic perspective and from their work in the field. Their involvement will help HFA pursue its goals of furthering awareness, use and support of hospice,” said HFA Chairman Thomas J. Spulak.

Dr. Reifsnyder and Dr. Washington join current board members Thomas Spulak, David Abrams, Myra MacPherson, Priscilla Perry, and Patricia Spulak. Amy Tucci, President and CEO of HFA, also joins the foundation’s board with Reifsnyder and Washington.

JoAnne Reifsnyder, PhD, ACHPN, has served as a consultant to numerous organizations on hospice regulations and other end-of-life issues. She is the current President of the Board of Directors for the Pennsylvania Hospice Network and a Member of the Board of Directors for the Hospice and Palliative Nurses Association. Her areas of interest include palliative and end-of-life care practice, ethical decision-making, and quality improvement in hospice. She is currently co-investigator on an NINR-funded study to evaluate the psychometric properties and clinical utility of a multidimensional, objective pain assessment tool in palliative care patients who are unable to self-report pain. Dr. Reifsnyder wrote a chapter for HFA's Pain Management at the End of Life, published in 2006,and was a panel member for HFA's 2005 teleconference, Ethics and End-of-Life Care.

Robert Washington, PhD, MDiv., is a licensed clinical psychologist and an ordained minister in the United Church of Christ. He has held various positions in mental health, including Commissioner of Mental Health Services for the District of Columbia and Executive Director for the Community Mental Health Council of Chicago, and William Wendt Center for Loss and Healing in Washington, DC. For the last 25 years, Dr. Washington has specialized in working with those who are ill, dying and/or bereaved and training others to do likewise. Through this work, Dr. Washington developed a strong interest in the interface of psychology and spirituality and subsequently pursued a second career in ministry. Dr. Washington served as a chaplain in the Inpatient, Bereavement and Admissions Departments of Montgomery Hospice. In 2005, he retired as adjunct professor in the End-of-Life Care Program at George Washington University. He currently serves on the Board of the Washington AIDS Partnership. Dr. Washington has written for HFA's blog and served as a panel member on HFA’s 2007 teleconference, Living with Grief: Before and After the Death.

Hospice Foundation of America (www.hospicefoundation.org) is a non-profit organization whose mission is to help those who cope personally or professionally with terminal illness, death, and the process of grief and bereavement. Among its annual projects is a widely viewed educational program, Living with Grief^®, which is viewed across North America by professionals and laypeople with an interest in end-of-life care issues HFA’s upcoming teleconference, “Diversity and End-of-Life Care,” will be broadcast April 29.

More on Language Matters: Supportive Care vs Palliative Care

Earlier this month we posted about a study appearing in the Journal of Medical Ethics on the language health care professionals use to discuss end of life care preferences. Last week, Pallimed's Thomas Quinn discusses a study that appeared in Cancer questioning 200 health care professionals on a web-based survey.

The questionnaire was short & straightforward, first asking clinicians if they were more inclined to refer patients for symptom control to a service named Palliative Care vs Supportive Care when patients were in the following groups: newly diagnosed with cancer; undergoing primary treatment for cancer; in remission; receiving active treatment for advanced cancer; advanced cancer no longer receiving active treatment or in transition to end of life. A service named "Supportive Care" was the clear choice of preferred name in all patient categories except the last, which was close to a tie.

When asked what term they preferred using when discussing the referral with patients and families, only 19% preferred 'palliative.'

When asked about perceptions associated with each name, 'palliative care' was considered a barrier to referral; well over 50% said that 'palliative care' is synonymous with hospice; a large percent felt that the term 'palliative' decreases hope in patients and families. 'Supportive care,' on the other hand, was significantly associated with treatment for chemotherapy side effects.

14% of participants reported that using 'palliative care' actually caused them distress, compared to 6% for 'supportive care.'

Despite these findings, participants reported that palliative care services are useful and there was a general willingness to refer, increasing as disease progressed and the patient approached the end of life.

Supporting a Family Member with Dementia - When They Want to Go Home

Caring.com's Paula Spencer writes about the challenge for family member's when a loved one with Alzheimer's or dementia says, "I want to go home." She offers some tips for dealing with this plea, which recognizes and respects the person with dementia. Arguing is counterproductive, whereas trying to understand the emotions underneath the statement can be more helpful.

March 12 Round-up: Caregiving, and Hospice and Palliative Care

• CMS is promoting its Ask Medicare feature on its caregiver website, http://www.medicare.gov/caregivers/. Users can view topics like Medicare basics, comparing drug and health plans, home health care and community services, nursing homes and alternatives and more. Learn more from Texas' Pittsburg Gazette.


• Listen to this National Public Radio story on the effect the economy is having on families providing eldercare for relatives.


• The Centers for Medicare & Medicaid Services (CMS) is holding the next Home Health, Hospice & DME Open Door Forum on April 1, 2009 at 2:00pm.

• Stanford University School of Medicine is running a study geared to improving at-home caregiving for U.S. veterans. They are looking for participants to gauge the effectiveness of an online workshop that provides training to at-home caregivers of veterans who suffer from traumatic brain injury, post-traumatic stress disorder, Alzheimer`s disease or other forms of dementia. Veterans who are caring for people with these disorders are also
  eligible. Learn more from the press release .
  


• Children's Hospital Los Angeles is starting an acupuncture program for children dealing with chronic pain.


• HemOnc Today discusses the effect fatigue has on adult and pediatric cancer patients.

  For patients with advanced cancer, palliative care patients and pediatric patients with advanced cancer, fatigue is one of the most prevalent and distressing symptoms they experience. It is the most common adverse effect of chemotherapy and radiation therapy.
  

  For cancer survivors, fatigue can continue to be a problem months or years after cancer treatment is completed. Fatigue is frequently multifactorial and affects not only the physical, but the psychological domains. Most patients do not broach the topic with their physician because they assume it is normal. Most clinicians do not ask about it because they do not realize the prevalence of the symptom and the distress it causes. Because of the profound negative impact it has on a patient’s life, addressing fatigue is a crucial component of effective palliative care.

End of Life Care and Costs in the News

The Archives of Internal Medicine's March 9, 2009 issue includes several articles on end of life care that are getting some media attention.

One study looked at racial and ethnic differences juxtaposed to the cost of end-of-life care. Researchers reviewed the treatment records of nearly 160,000 Medicare patients in the last six months of life. Medicare costs averaged $20,166 for whites, $26,704 for blacks, and $31,702 for Hispanics. The study did not examine reasons why costs varied. Read the Associated Press article for more information.

Another study discussed the role end-of-life conversations between a physician and a patient can play in health care costs during the last week of life. NPR discusses the findings with the study's author, Holly Prigerson. The study included 627 patients with advanced cancer and was funded by the National Institute of Mental Health and the National Cancer Institute. 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. Reuter's Andrew Stern reported :

After interviewing the patients' caregivers and nurses, the researchers concluded that palliative care led to more comfortable deaths, and aggressive care did not prolong life.

"The more aggressive care you get, the worse your quality of life. The longer you're in hospice and receive palliative care, the better your quality of life in that last week," Prigerson said.

Some patients do hope for a miracle cure, she said.

"We're not saying these conversations are easy," she said, suggesting physicians ill-equipped for the job pass it on to those that are, such as palliative care specialists. "Patients aren't significantly more distressed after these conversations. Letting false hope persist is not really helpful."

A third study, receiving the most attention, addressed patients' feelings of abandonment by their physician once they entered hospice care. The lead author is Anthony Back, a professor of medicine at the University of Washington. USA TODAY reports:

"I think patients should expect more," says Back, an oncologist.

"I don't think it's OK for them to talk to the doctor about hospice and never hear from the doctor again," he adds. "I think it just makes that whole process harder."

Back and his co-authors interviewed 31 doctors and 55 of their patients, all of whom had incurable cancer or advanced chronic obstructive pulmonary disease and were expected to die within a year.

The Los Angeles Times and HealthDay News also offered articles on the study. Christian Sinclair at Pallimed looked at the structure hospice care and why this might occur:

The headlines place the blame squarely on the physician, but for those who work in hospice it is easy to see the many reasons why contact breaks down between physician and patient after hospice enrollment. The blame does not rest solely with the physician but more with the system in general.

There was also a study examining the reasons patients in Oregon request physician aid in dying under Oregon's Death With Dignity Act. They indicated concerns about "future illness symptoms as a leading motivator."

Language Matters: Discussing End-of-Life Care

Yesterday's USA TODAY discusses whether changing the language health professionals use to ask about end-of-life care preferences might effect the answer of patients and their families.

A study published last year in the Journal of Medical Ethics measured how often nurses, student nurses and people with no health care backgrounds would endorse allowing death to progress when they were approached with the phrase "do not resuscitate" vs. "allow natural death." The nurses were likely to support the dying process regardless, but all three groups reported a greater likeliness to forgo resuscitation if "allow natural death" was used.

Some intensive care doctors say the words "do not resuscitate" can't yet disappear. That phrase carries a specific command to the attending medical team.

Razak Dosani, head of Lee Memorial Hospital's intensive care unit, says "do not resuscitate" means doctors will not perform cardiac resuscitation. But they will do everything up to that point. That might not be what the family or patient really wants. "Allow natural death" suggests doctors will offer only comfort measures, because any other aggressive treatment, such as intubation, may only prolong death.

Intensive-care doctors believe adding new terminology will help families with their decision.

Samira Beckwith, CEO of Hope Hospice in Fort Myers and a panelist on HFA's upcoming Diversity in End of Life Care teleconference points out that the idea of using different terminology is not new. She told USA TODAY:

a statewide task force a decade ago looked at adopting the language on its Do Not Resuscitate forms. That didn't happen, Beckwith says, but it got health care providers talking. Hope Hospice providers use "allow natural death," along with other terminology, to make sure patients and family understand their options.

"Our greatest responsibility is to listen to the person and find the language that is best understood by them," Beckwith says.

March 4 Round-up: End-of-Life Care Topics

• The second edition of the Palliative Care Grand Rounds is available on the Dethmama Chronicles blog. This "monthly blog carnival" the Grand Rounds highlights blog posts related to hospice and palliative care.

• Pallimed posts about the effects of the financial crisis on the George Mark Children's House, the first dedicated pediatric inpatient hospice facility in the United States.

• The Compassionate Friends has announced their Compassionate Employer Recognition for 2009. One hundred forty one employers were selected for "showing extra sensitivity to bereaved employees following the death of a child."

• This site has some good information on California's adoption of POLST (Physician Orders for Life-Sustaining Treatment). Here are more resources on different state's use of POLST, hosted by the Oregon Health & Science University.
  

NHPCO Statement on MedPAC Recommendations

The National Hospice and Palliative Care Organization (NHPCO) has issued a statement on the Medicare Payment Advisory Commission's March report to Congress, that recommends changes to the Medicare hospice benefit. Concerning the current review of the hospice benefit, NHPCO states:

Included in this comprehensive review of hospice should be payment methodologies, fiscal constraints review, alternative eligibility criteria, testing of new models of care, as well as any number of other issues. The hospice community is committed to work toward these goals.

Guiding this review ought to be several clear principles. Among them are:

• Advancing hospice and palliative care programs as the recognized providers of end-of-life care;
• Preserving and enhancing the Medicare hospice benefit;
• Recognizing "high quality" as the standard to which all providers must subscribe;
• Ensuring accountability through transparency and fair regulatory scrutiny; and
• Promoting increased access through expansion and collaboration.

We provided information about the January MedPAC meeting here. The March report is available here (PDF), in the last chapter of the document.