Pitting Hospice Against Palliative Care Misleading

This Letter to the Editor from HFA appeared online today at denverpost.com.

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Re: “I call them guardian angels,” March 25 Denver and The West story.

This article addresses the vital importance of patients and families having options in the care they want when facing a terminal illness. Unfortunately, the article has chosen to pit palliative care against hospice care. Dr. Johnson states that palliative care succeeds by “putting patient and family right in the center … . It’s about providing good medical care — as defined by that patient and family.”

Hospice care has provided just this kind of care for over 25 years. In addition to excellent medical care, hospice is the only system of care in which emotional and spiritual support for the patient and family, both during the dying process and after the death, is covered by Medicare.

By saying that people in hospice must “give up the right” to pursue life-prolonging treatment, the article perpetuates the common myth that hospice is about giving up or giving in. Yet the Millers, who were highlighted as an example of the strengths of palliative care, explicitly stated that after reviewing their options, they “decided on no further medicine, no chemo.” To paint one as “giving up” while heralding the other as a family- and patient-driven decision is, at best, misleading. Over 1 million people actively choose hospice care each year over futile treatments in order to receive the best pain control and quality of life.

The article also touted the economic efficiency of palliative care. Yet a recent report by Duke showed that not only does hospice deliver high quality care to the dying, it does so in a way that is economically sound. Citing other researchers who have demonstrated that hospice improves the quality of life for patients and family members, the authors conclude that “the Medicare program appears to have a rare situation whereby something that improves quality of life also appears to reduce costs.” Hospice has been shown to save money since the first study was done in 1986.

Ultimately, when faced with end-of-life decisions, families deserve the best care possible, whether or not it increases the economic and managerial efficiency of a hospital system. Hospice care has set the standard for quality end-of-life care for more than 25 years, and allows people to die in a home environment rather than a hospital if they choose. For more about the facts of hospice care, please go to www.hospicefoundation.org

David Abrams, President, Hospice Foundation of America, Washington, D.C.

Examining Hope in Patients with ALS

A study from April's Journal of Palliative Medicine, released online this week, investigates the concept of hope in patients with amyotrophic lateral sclerosis (ALS). Through interviews with 16 patients, the researchers defined eight categories of hope: hope for a cure, social support, search for information, spiritual beliefs, concern for others, adapting to changing capacities, living in the moment, and self-transcendence. The authors of the study suggest that the palliative care team has an opportunity to assist in the "process of acceptance of illness and death" for these patients.

Sibling and Long-Distance Caregiving Issues Examined

We wanted to share two items about sibling and long-distance caregiving. First, Carol O'Dell writes about the difficulty in coordinating caregiving between sibling on her Mothering Mother and More blog.

If you’re the primary caregiver, you may feel resentment toward your “free” sibling who works, goes to movies, take vacations.

If you’re the “other” sibling, you feel guilty. You don’t know where you fit in. You’re uncomfortable speaking up and voicing your opinion because after all, you’re not the one doing all the work–and you’re reminded of that often.

If you’re the third sibling, well, you might as well be in the outer Netherlands. That’s might be how it feels. All those childhood birth order issues get kicked right back up.

Second, an article from the Craig Daily Press (CO) discusses the experience of Rene Mattone, who lives far away from her parents, leaving the responsibility for daily caregiving to her six siblings. Her father is in the early stages of Alzheimer's disease and her mother has cancer.

In some respects, living far away is easier because Mattone doesn’t have to witness the changes in her parents — her father is in the early stages of Alzheimer’s disease and her mother has cancer — yet the distance often leaves her feeling guilty and helpless.

“I feel like I’d like to be able to do more, like I’m a little bit of a disappointment because I can’t be there,” she said.

Living far away from an aging parent — especially one who is injured or sick — can be an emotional rollercoaster for an adult child, who must cope with worry, frustration and feelings of inadequacy. These feelings are compounded by the stress of caring for that person over hundreds or thousands of miles.

Seeking Grandparents for Caregiving Survey

From the Denton Record-Chronicle:

Dr. Bert Hayslip of the University of North Texas Psychology Department and UNT student Shanna Davis are conducting a survey exploring the role of endurance as a resource among grandparents who are raising grandchildren on a full-time basis. The survey will ask questions about the grandparents, the caregiving situation and about the relationship to the grandchild. The survey takes about an hour to do and can be done at home.

To qualify for the project, grandparents must be primarily responsible for the full-time care of their grandchildren, who must be younger than 18 and residing with the grandparent.

Those interested can have the survey mailed to them. All information will be confidential. Each grandparent will be assigned a code number that will uniquely identify them only to Hayslip and Davis; no names will appear on the survey.

Also, grandparent caregivers are under no obligation to complete the survey even if they have begun the project. If desired, participants may receive results of the project when it is completed.

For more information, call 940-565-2675 or e-mail hayslipb@unt.edu

Perinatal Hospice Programs

An MSNBC story from Monday focuses on perinatal hospice programs. The story also shares a website, www.perinatalhospice.org, that tracks the growth of perinatal hospice programs in the United States. The site is run by Amy Kuebelbeck, whose son was diagnosed prenatally with a deadly heart defect in 1999. In a previous post, we shared an article that appeared in the New York Times last year, which explains the role of perinatal hospice and followed two families experiences.

Weinberg Foundation Offering Family and Informal Caregiver Support Grants

The Harry and Jeanette Weinberg Foundation, based in Baltimore, announced a new grants programs aimed at supporting caregivers of the elderly. The Foundation plans to award 12 to 20 grants ranging from $300,000 to $900,000 to nonprofit community groups, who will also need to provide a local match. Non-profit 501(c)(3) organizations, including aging and human service agencies, faith-based and other community-based organizations, tribal organizations, and units of local government are encouraged to apply. For more information, see their website, www.hjweinbergfoundation.org.

Nevada Launches Living Will Website

Nevada joined other states offering an electronic repository for patients' advance directives and living wills:

The site is the state’s first online repository for advance directives, allowing health care professionals access to decisions about their patients’ end-of-life treatment options.

Advance directives, including living wills and Durable Power of Attorney for Health Care papers, are legal documents for individuals to communicate appropriate end-of-life care ahead of time. Advance directives are used when individuals cannot communicate this information to their healthcare provider themselves.

“Typically, people think advanced directives are an issue for older people, but this is an issue that affects everyone,” said Sally Hardwick, the center’s interim director and a lecturer for the University’s School of Public Health. “When individuals have an advanced directive, it alleviates pressure on family members to make a decision and allows the individual’s wishes to be carried out by a physician.”

Only 22 percent of Nevadans have advanced directives for end-of-life care. Further complications arise about end-of-life treatment, according to a 2002 Nevada survey of emergency medical service responders and emergency physicians, because advance directives are rarely seen by emergency room personnel.

“As an emergency room doctor with an interest in bioethics, I have witnessed patients in the hospital who are very sick and then a sudden event occurs,” Reno physician Kevin Brown said. “Having access to advance directives at the hospital is a concrete way to grant the patient’s wishes.”

We've previously posted about Oregon's plans to make it's POLST orders ("Physician Order for Life Sustaining Treatment") available electronically as well.

Julia's Life in Pictures

Hospice Foundation of America's 2008 Living with Grief Teleconference will focus on the experience of grieving children and adolescents and the ways that hospice professionals, teachers and school administrators, grief counselors, funeral directors, and parents can best support these populations as they cope with loss and grief. One of our regular contributors, Elizabeth Uppman, reflects on the role a hospice art therapist played in her and her daughter's life after the death of her son, Gabriel.

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Elizabeth Uppman

My son Gabriel was 3 when he died. His sister Julia had just turned 6. The following months were rough on everyone, especially Julia, who acquired a whole catalog of fears (dogs, tornadoes) and developed the habit of following me from room to room of our tiny house.

Stephanie, the art therapist from hospice, came for her first visit the week after Gabriel died. Stephanie brought clay and crayons and paints and beautiful big sheets of paper, and she and Julia sat down at the kitchen table to make art. Stephanie's visits didn't magically dissolve Julia's fears or make our going-to-bed battles any better, but for that one hour per week, Julia basked in her attention.

One of their projects was a pictorial history of Julia's life. Julia drew six scenes: her birth, our move from Mexico to Kansas, Gabriel's birth, Julia's first day of school, her fourth birthday, and Gabriel's death. The scenes are connected by round gray stepping-stones. In the middle of the picture is a seventh scene, an imaginary one, in which a white-robed Gabriel hovers over Julia. In cartoon word-balloons Gabriel says, "I see Julia." Julia says, "What, Gabriel?" Gabriel replies, "I see you."

Click here to view a larger image.

Fast-forward a couple of years. We have a new baby, Lucia, and are moving into a new house. Unpacking, I pull a picture out of a box. It is Julia's pictorial history, which Stephanie framed for us as a goodbye gift. "Hey, Julia," I say, "where do you want to put this?"

Julia dashes in from the next room, her long hair flopping. She has been videotaping the new house and wants to get back to it. She looks at her artwork – the blobby airplane, the people with no necks and cauliflower hands – and wrinkles her nose. Clearly, her artistic abilities have matured since then. "Do we have to put it up?"

"Well, we don't have to put it in your room if you don't want to."

She considers. "Can we put it in Lucia's room?"

"Why Lucia's room?"

"Well, she has to learn the story."

The picture is still hanging in Lucia's room, amid a taped-up assortment of Lucia's own art. Just now I went in to look at it. The airplane made me smile, its wings upraised like a bird's. I had never noticed that, in all three of Gabriel's scenes, he is smiling.

Elizabeth Uppman

Anticipatory Grief Prevalent Among Dementia Caregivers

Professor Jacquelyn Frank, of the University of Indianapolis has examined the challenges faced by caregivers of dementia patients.

Frank gathered responses from more than 400 dementia caregivers around Indiana, most of them spouses and adult children of Alzheimer’s patients . . . she was struck immediately by the responses to this open-ended question: “What would you say is the biggest barrier you have faced as a caregiver?”

Though the respondents’ language varied, a computer analysis found that more than 80 percent of them touched on a common theme: “letting go of the person we used to know,” as one person wrote, or “watching your loved one slip away and forget who people are.”

The comments illustrate two previously noted but seldom-studied phenomena seen in those caring for the terminally ill. “Anticipatory grief” is the pain of losing a loved one, felt in advance of the patient’s death. “Ambiguous loss” is the discordant feeling that comes from interacting with a patient who is physically alive but no longer seems present socially or psychologically.

It’s not surprising that such effects would be common among dementia caregivers, but this study is among the first to document their prevalence.

“The fundamental barrier experienced by Alzheimer’s caregivers appears to be a combination of anticipatory grief and ambiguous loss, rather than hands-on care issues,” Frank says.

Hospice Foundation of America's 2007 book, Living With Grief: Before and After the Death, dealt with the concept of anticipatory grief.

Role of Palliative Care Pharmacists in Patient Care

From the American Society of Health-System Pharmacists, a description of the changing roles of a palliative care pharmacist. While providing psychosocial care is traditionally seen as the role of a social worker on a palliative care team, some programs are training pharmacists to play a greater part.

Preparing for the End of Life

Dr. Kirth Steele, who practices practices intensive care medicine, urges readers to take personal responsibility in planning for the end of life.

This is where personal responsibility enters the picture. We owe it to our families to think about and discuss these things far in advance of the inevitable decline and/or devastating illness. This allows us to retain control of our destiny and to come to terms with our eventual death. This also represents a chance to provide a final gift to those closest to us, the gift of relieving them of a burden as we talk openly and honestly about how we want to end our lives. It gives us a chance to ease them and ourselves into a state of mind which is, admittedly, uncomfortable for all of us.

No matter how well we plan and how much we practice good health habits, death will come and for some, suffering along the way to death. However, we can spare ourselves and our family's needless suffering and indignity by thinking about our values and understanding what gives us meaning far in advance of our inevitable decline and/or devastating illness. Though we cannot control how we will die, we can choose how we approach our dying and how we care for ourselves and others in the process. That choice to care may be the most valuable possession we have.

Internist Opines on Why Hospice Matters

There are quite a few 'anonymous' medical blogs out there, doctors and nurses who want their voices heard, but not on the record. I avoid posting from them, because there are plenty of medical professionals willing to attach their names to blogs. But this anonymous post from the WhiteCoat Underground blog, by an internist, captured my attention. Hospice professionals would undoubtedly agree with this description, but there are many people (medical professionals included) who still don't really "get" hospice care. This internist does:

Hospice care is aggressive, but not in the same way as standard medical care. The starting assumption is that a disease is incurable and the patient is going to die. Since the disease is ultimately going to win, the only battle left is the symptoms. Pain, breathing difficulties, loneliness, grief are all treated aggressively by a multidisciplinary team that usually includes doctors, nurses, clergy, and others.

The hospice team cares not just for the patient, but the family as well. Hospice treats not just the pain of the disease, but the pain of loss as well. Hospice care is indeed aggressive care, when it is most needed.

Krista Renenger

Caregiver's Viewpoint: Validating Dementia Patients Comes Naturally

Author and caregiver Carol Bradley Bursack writes about how she dealt with her father's delusional state from dementia. Before it became a known as 'validation theory,' Bursack sought to allay her father's anxiety by helping re-create the reality he was experiencing.

Dad was adamant. He was waiting for his medical degree to come from the University of Minnesota and wondered why it was taking so long. I did what I usually did, and waited a few days to see if this episode of delusionary thinking would pass. It did not. So, I went to my computer and designed a medical degree with my dad’s name on it, scribbled some “signatures” on the bottom, put it in a mailing envelope and brought it to him, in the nursing home, the following day. He was delighted.

The Strain of Caregiving on Marriages

Last Sunday's Washington Post Magazine featured a look at the stress and strain long-term caregiving causes in marriages. The article follow one couple's caregiving journey, when the wife is diagnosed with Huntington's disease. On Monday, the Post hosted a live discussion with the article's author and the husband featured in the magazine.

Interview with Dr. J. William Worden

HFA is pleased that Dr. J. William Worden, a leading expert in the field of children and bereavement, will be a member of HFA's teleconference panel in April. Dr. Worden discusses his groundbreaking work with HFA's Lisa McGahey Veglahn as the co-director of Harvard's Child Bereavement Study, based at Massachusetts General Hospital; the changes he has seen in the field since he began the study with co-director Dr. Phyllis Silverman; and creative strategies he has found that can benefit children and adolescents dealing with grief and loss.

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Q. You have been played an instrumental role in the Harvard Child Bereavement Study. Can you briefly describe that project and what impact it has had on what we know about children and loss?

A. Dr. Phyllis Silverman and I were co-directors. Our goal was to develop a study of bereaved children that would the most effective study to date. We met with our first group in 1987 and followed each group longitudinally for two years. A few components of the study are particularly significant:

• We interviewed both parents and children in families where one parent had died; up to that point, most studies on bereaved children had only interviewed the surviving parent.
• We chose children ages 6—17 from communities in the Boston area representing a wide range of backgrounds and demographics.
• We matched each bereaved child with one non-bereaved child as a control.

One of the most significant findings from our work has been that many of the negative consequences associated with the loss of a parent do not appear in children for as long as two years after the death. Even hospice care, which has always been strong in offering bereavement support, generally focuses on the first year after the death.

Q. What implications does that finding have for hospices and other organizations that work with bereaved children?

A. One of the main objectives that has come out of the study has been to develop a screening instrument that can be used, 4-6 months after the death, to predict which children will not be doing well two years out. On average, we find that about 20% of children will need intervention after two years. This average contrasted significantly with the average for the control group, which was closer to 9—11%.

Donna Schuurman of The Dougy Center has used our screening instrument in her enrollment, and they found that their programs did indeed primarily reach those 20%. Utilizing the instrument and the findings from the study does not mean that we recommend excluding 80% of children from bereavement support, nor do we want programs to wait for two years until those kids really need help. The screening instrument can help serve as an indicator, 4-6 months after the loss, of which kids might need help later on, and offer those interventions now.

In my book Children and Grief: When a Parent Dies, I write that there are basically three approaches of how we have helped kids in times of loss:

1. We can take a sort of traditional approach—“it’s tough for every kid to lose a parent” and offer all bereaved children some sort of intervention. But what we found from the Harvard study is that not all kids need it, and it is not cost-effective.
2. We can wait to see that a child is really in trouble—acting out, failing in school—and then step in.
3. Using our findings and instruments, we can develop an early prediction of potential problems and hopefully use a more preventative mental health approach.

Q. Is there one factor that seems to be a strong predictor for children who might have trouble coping after the loss of a parent?

A. It is very clear that the one variable that most strongly affects the functioning of a child after loss is the functionality of the surviving parent. If that parent is depressed, if he or she is not able to maintain a consistency within the home with regards to homework, discipline, etc., that child is going to have a much more difficult time adjusting to the loss.

Q. So does that mean that programs should focus more on helping the surviving parent?

A. That’s an interesting philosophical issue. It certainly may be more appealing to funders and community members to offer programs for children, rather than adults. Some of the work may just be in re-thinking what type of support is offered. For instance, I once oversaw a fairly traditional men’s bereavement program, and attendance was very low. We made a change and focused more on “skills for single parents,” and were able to reach out and really help those men.

Irwin Sandler’s group in Tempe, AZ has developed an intervention to identify poorly functioning parents, with the hope that by identifying these parents, the children will then also benefit.

Q. What changes have you seen in professional beliefs about children and loss since you entered this field?

A. In the last 15—20 years, I have definitely seen an increased interest in the issues facing bereaved children. There has been much more written in the literature on intervention, and some wonderful books for kids have been written as well.

The Harvard study was really a spawning ground for the concept of “continuing bonds,” which is now a strong theme in bereavement. The phenomenon was clearly prevalent with the children we interviewed, so we developed some questions to pursue the concept as the study went on. In children, we do not see the need for continuing bonds as a predictor of a problem. The existence of these bonds did not have negative consequences for most children.

Q. What are some fundamental components of how children grieve that may differ from grief in adults?

A. Based on the research, a great deal of the differences depends on age and development. I generally break it down into three categories:

1. Preschoolers/young children: For about the first year after the death, it is very common for this age group to show major regression to earlier developmental stages, in areas such as toilet-training or even language.
2. School-age: One finding in the Harvard study that has always fascinated me was how many children this age somaticize grief—headaches and stomach aches are very prevalent. Some children this age may also revert to clinging behavior. This is not to say that it would be unusual for a school-age child who has just lost a parent to want to stay close to the surviving parent at first. With intervention, there is always that fine line between supporting the child’s wishes and promoting a behavior that may not be healthy.

   Aggression can also be a factor with this age group, especially with boys. In these cases it is critical that the school personnel are aware of, and sensitive to, the child’s circumstances.

3. Adolescents: In general, the grief you see with adolescents is fairly similar to that of adults.

I am often asked the question, “Do young kids grieve?” Some professionals say that for a person to experience grief, that person must be capable of understanding certain abstractions about death, mortality, etc. My belief is that, even if a child is not able to grasp abstractions, he or she will respond to separation, and that is grief. And even very young children will pick up on the “vibes” of a family that is in crisis, or dealing with loss.

Q. What role can schools play in helping children cope with loss?

A. In the Harvard study, we found for the most part that schools have been doing a good job in helping kids. For many young people, the most important intervention is simply having patient adults who are willing to help kids find ways to talk about the loss, and being willing to listen. While some kids in our study reported that they did not want to talk, very few kids reported that a teacher wouldn’t let them talk.

Many schools are now partnering with hospices and other community groups to provide bereavement support in the school. The only advice that I would stress is that schools should not offer “mixed” groups for children dealing with divorce and children dealing with the death of a parent.

Q. In your work with the Harvard study, what role did the funeral play for the children?

A. Most children we interviewed attended their parents’ funeral. Attending the funeral can help the child feel important at a time that he or she may feel displaced by what is happening around them. In some cases, children can be encouraged to participate in the funeral, which can help them feel included.

In general, I like to see the child given an educated choice. They should be told what they will see, what they should expect. For very young children, up to five years of age, the parent can generally decide what would be best. One suggestion that can help is to “assign” an adult friend to accompany the child to the funeral, in case the child has second thoughts.

Q. It has been found that up to 20% of young people who are grieving may require more intensive intervention. Beyond the more obvious behaviors, like self-destructive acts, what are some more subtle warning signs that a young person is struggling and needs more help?

A. One significant concern is when a child exhibits significant, sudden changes in behavior. Of course, short-term changes may be normal. But if the changes are persistent, or striking—for example, the usually social child doesn’t want to be around anyone—this may be cause for concern.

A few “red flag” signs that may indicate the need for further assessment by a mental health professional are:

• If a child cannot speak about the dead person, or leaves the room when the person’s name is mentioned;
• A child whose aggression becomes destructive, especially if this is new or unusual behavior
• A child who develops persisting anxiety.

Again it is important to look at these in the context of the death; many of these behaviors may be typical soon after the death, but if they continue they may be more serious.

In any of these situations, I would urge professionals to take the time to listen well; to be patient and really develop relationships with the children they work with, so they can offer them the best support through this challenging time.

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J. William Worden, PhD, ABPP, is a Fellow of the American Psychological Association and holds academic appointments at Harvard Medical School and the Rosemead Graduate School of Psychology in California. He is also co-principal investigator for Harvard's Child Bereavement Study, based at Massachusetts General Hospital. He is the author of Personal Death Awareness; Children & Grief: When a Parent Dies; and is co-author of Helping Cancer Patients Cope. His book Grief Counseling & Grief Therapy: A Handbook for the Mental Health Practitioner, now in its third edition, has been translated into 12 languages and is widely used around the world as the standard reference on the subject.

Hospice Offers Music Thanatology to Patients

This Chicago Tribune article discusses the clinical benefits of music therapy for both the living and the dying. It details one hospice programs which uses a music-thanatologist to comfort dying patients.

The Midwest Palliative & Hospice CareCenter, based in Glenview, offers a different kind of music therapy for terminally ill patients. Therapist Pat Harthun, who sings and plays guitar, said, "The music helps patients express their feelings in a way that is much less threatening than talk therapy, and it can also help with physical aspects such as reducing their pain, lowering their heart rate and blood pressure, and helping them to breathe more easily and relax."

Peace in the final hours

When a patient has only a day or two left to live, a music-thanatologist (from the Greek word for death) who plays a harp and sings or hums melodies can ease the final hours.

"It's not a concert, and we're not playing Bach," explained music-thanatologist Margaret Pasquesi. "We weave together musical elements in response to a patient's moment-to-moment changes with the purpose of alleviating physical, emotional and spiritual suffering, so the music is very individualized as the patient's respiration rate or agitation changes."

Cornell University's Aging Research Translator

The Aging Research Translator offers ". . .non-technical summaries of aging research published in peer-reviewed academic journals."

The ART website has been designed with community-based practitioners in mind. Community-based practitioners are the largest group of potential users of aging-related research, and the people most likely to apply the aging knowledge-base to the lives of real people. However, the location of research in university libraries and databases makes it difficult to access. Furthermore, the overly technical language of research articles can be an impediment. The ART website, developed by Cornell University researchers, attempts to address these challenges by posting summaries of aging research literature using non-technical language.

Thanks to Laurie Blanchard's long-term care blog for sharing this site.

GAO Report on Medicare Advantage Plans

The GAO recently published a report comparing traditional Medicare to Medicare Advantage plans (offered by private insurers.) U.S. News & World Report offers a synopsis of the report here. The original GAO report on Medicare Advantage, "Medicare Advantage: Increased Spending Relative to Medicare Fee-for-Service May Not Always Reduce Beneficiary Out-of-Pocket Costs," is available as a PDF.

PBS Produces Caring for Your Parents

Last month we shared a request for videos from PBS for people caring for elderly parents. The program will be airing April 2, 2008 spring and PBS has placed some of the videos on their website.

"As the population ages, many adult children are grappling with an unprecedented social, cultural, economic, and personal revolution as they transition into the primary caregiver role for their aging parents. Produced, written, and directed by award-winning filmmaker Michael Kirk, Caring for Your Parents is a moving two-hour special that draws much-needed attention to this universal reality."

Practicing Acceptance for the Hospice Professional

Vince Chiles

Learning to accept the inevitable is something hospice professionals often discuss with those in their care. They need to help their patients and families come to terms with what it means to have, or care for someone with, a terminal illness. Acceptance is not just something that helps hospice patients cope and have a better quality of life, it is something that helps us all cope better. When we struggle in life it is often because we are not accepting something that is interrupting our status quo. Learning to practice acceptance is something the hospice professional can do to help him cope better with the demands of this work.

Hospice professionals get recharged by helping their patients and families make peace with their illnesses and find a better quality of life in the time they have left. We are passionate about caregiving, and feel blessed by each patient contact we have. However, the nature of the work behind that contact is demanding; from obtaining physician orders, to paperwork, to assuring regulations are met. These demands can exhaust the professional and create a sense of disharmony and frustration. “How can we do all that needs to be done,” we lament. If giving care charges us up, doing the work drains us.

Accepting the work behind hospice care is a key to best care practices. Denying all the responsibilities of the job can create frustration, and it is a form of denial. When we accept all of the work as a means to providing the very best patient care, we learn to manage ourselves better. As a result, we can keep our battery packs charged, and we can keep going, and going. . . Acceptance is much more then a care strategy in hospice; it is a way of life.

Here is my simple four-step guide to practicing acceptance. First, take a few moments to stop yourself before you allow the frustration to build. Second, check-in with yourself by acknowledging what is frustrating you. Third, learn to follow your gut, by asking yourself ‘What can I do to make this situation better?’ Pay attention to your intuitive answer and apply it to the situation. If you can’t come up with an answer, ask for help. You can call your supervisor, another team member, or appeal to a higher authority. Fourth, take a few deep breaths to re-focus and re-direct your attention to what has to be done next and move on.

The third step also requires a willingness to ask for help when you cannot find a solution on your own. Your supervisor wants you to provide the best care, and asking for help assures this. Hospice administrators strive to provide leadership that fosters emotional well-being in the workforce. They often use a variety of resources to promote a healthy team.

Some examples of resources hospices use to promote employee well-being include; open door policies regarding staff concerns, providing supportive services to lessen work responsibilities, and employee assistance programs. Many hospices extend the services of their spiritual and bereavement departments to staff struggling with the emotional rigors of the work. Hospice programs may provide onsite trainings, or send staff to professional seminars for personal development, growth, and renewal. Many programs hold regular staff appreciation events, from pizza parties to recognition receptions, to validate the dedication and hard work of their employees and volunteers. Hospice administrators recognize the value of a healthy inter-disciplinary team, and strive to develop new and improved programs that encourage hospice staff and volunteers to feel comfortable to seek out help when they need it.

Hospice leadership recognizes the value of effective team work. Effective team work means that no one person will have all the answers all the time. It means the members of the team will need to rely on one another to get the job done. Hospice administrators know that acceptance of our limitations as team members is a valuable resource in assuring best practices. The best hospice teams require members who can acknowledge the value acceptance plays in promoting quality care.

Remember to practice acceptance yourself every time you feel you are reaching your knowledge limit. Apply these four steps; stop yourself, check-in, follow your gut or ask for help, and move on. As you become used to using these tools you will find you have a greater level of acceptance in your work, and as a result you will be providing better care.

Vince Chiles, MSW

Difficulty in Choosing Drugs to Treat Dementia

A group from the American College of Physicians, led by Dr. Amir Qaseem, conducted a review of 96 different studies covering five drugs used to treat dementia. According to the article in Reuters:

"The drugs can sometimes delay progression of the symptoms of dementia, which can take many different forms.

None works very well for people in general, although individual patients may see benefits, Qaseem said.

'There is so much variation between individual patients,' he said. And if doctors keep trying one drug after another, weeks and months can pass. In the end, he said, 'there might not be any effect at all.'

Writing in the Annals of Internal Medicine, Qaseem and colleagues said they looked for evidence that the drugs helped cognition, global function, behavior, mood and quality of life.

Rather than trying to find the most effective drug, doctors should focus on tolerability, adverse effects, ease of use and cost, they recommended."

The drugs reviewed are the only ones currently FDA-approved drugs for treatment of dementia, donepezil (Aricept), galantamine (Razadyne, Reminyl, Nivalin), rivastigmine (Exelon), tacrine, and memantine (Mamenda). The review has led to new guidelines issued by a joint panel of the American Academy of Family Physicians and the American College of Physicians:

Dementia Guideline Panel Recommendations

Recommendation 1: Clinicians should base the decision to initiate a trial of therapy with a cholinesterase inhibitor or memantine on individualized assessment. (Grade: weak recommendation, moderate-quality evidence.)

Recommendation 2: Clinicians should base the choice of pharmacological agents on tolerability, adverse effect profile, ease of use and cost of medication. The evidence is insufficient to compare the effectiveness of different pharmacological agents for the treatment of dementia. (Grade: weak recommendation, low-quality evidence.)

Recommendation 3: There is an urgent need for further research on the clinical effectiveness of pharmacological management of dementias.

Relief Accompanies Alzheimer's Diagnosis

A research study from Washington University in St. Louis suggests that informing patients of their Alzheimer's or dementia diagnosis early improves the emotional well-being of both the patients and their caregiver. The study examined 90 individuals and their caregivers at the Alzheimer's Disease Research Center at the university's School of Medicine, and confirmed that ". . . most patients, regardless of their degree of impairment, tend to experience a sense of relief after getting their diagnosis."

"'We undertook this study because we wanted there to be some data out there that addressed this question and that we could show to physicians and say, "Most of the people don't get depressed, upset and suicidal. So, this fear that you have about telling them and disturbing them is probably not legitimate for most people,"' says Brian Carpenter, Ph.D., associate professor of psychology in Arts & Sciences at Washington University."

Factors to Consider in the Use of Antibiotics in Dementia Patients

D'Agata and Mitchell's study in the Archives of Internal Medicine reporting on the use of antibiotics to treat infections in persons with advanced Alzheimer's disease (A.D.) brings to mind the complexity underlying the dilemmas surrounding care of persons who can no longer make therapeutic decisions for themselves. Many patients reside in an extended care facility. Most are elderly, female and lacking in definitive advance directives regarding management of infections they may develop in their final days.

Mitchell (Hebrew Senior Life's Institute for Aging Research), informs us that patients with advanced dementia ''frequently receive antibiotic medications -- especially in the two weeks prior to their death." A recent Pallimed blog (February 27, 2008) opines that this "multi-center prospective cohort is probably the best study to demonstrate the limited efficacy of antibiotics in patients with advanced dementia."

The Archives journal also includes an editorial response to the D’Agata and Mitchell study entitled, “Antibiotic Therapy in the Demented Elderly Population: Redefining the Ethical Dilemma.” This paper, which has generated intense commentary, mentions two reasons to question the administration of antibiotics to persons in the final stages of dementia:

• the lack of lasting improvement


• the possibility of predisposing to the development strains of bacteria that are resistant to commonly available antibiotics.

The commentary also points on how the decision to treat should be made, stating:

“. . .the ethical question of treatment of bacterial infection must encompass not just the deliberation over whether to withhold or withdraw treatment, but the decision to initiate it as well. All such decisions must ultimately be made individually, based on the medical situation and the expressed wishes of the patient and family, as well as on the physician's judgment of the benefits and risks entailed in treating vs not treating.”

Addressing this need for deliberation also raises the question of whether communication between the physician and the family is adequate. While it is easy to place responsibility for failures in communication at the feet of the physician, all who work with the patient share in the responsibility to communicate with the family of patients with advanced dementia. My experience in co-leading a support group for family caregivers of patients with Alzheimer's disease reminds me over and over that communication is not a one time event. Caregivers -- institutional and family -- require support as well as education. It is economical to provide this in a group that can share its knowledge with new members. Such a group is also a tremendous asset in providing support during bereavement.

I am also concerned that the discussion about administration of antibiotics to persons with end stage dementia thus far does not adequately deal with other factors that contribute to or result from the reflexive prescribing of antibiotics to persons with infections during the final phases of dementia. In the case of hospice care, there are a number of factors (imperatives) that contribute to the need for hospice/palliative care. One of them is the Therapeutic Imperative. This term suggests that there is a pressure, an imperative, to treat vs. not treat on the part of physicians, patients, family and caregivers. Physicians are reluctant to say there is "nothing more" they can offer. Patients do not want to relinquish hope. Caregivers and family members often urge doctors to "do something." Modern medicine has been held out as a right. Patients are consumers. They know that they want "something" rather than nothing. When the patient is severely demented and unable to make decisions, the family and sometimes the caregivers are reluctant to admit the inevitability of death.

Physicians are reluctant to be in a position where they have declined ordering a medication including antibiotics for elevated temperature in patients with advanced dementia. It is easier to order the medication even if it is against the physician's better judgment to do so. Further, physicians are cognizant of the legal implications of not providing a medication to treat a specific condition (like an apparent pneumonia) because of the risk of not practicing in accord with the standards of the community. The threat of being sued for malpractice is a constant presence in the lives of all physicians. In addition, our current system of physician reimbursement limits the frequency of visits. Time spent communicating with family and caregivers is covered only minimally, if at all. Due to the limited time physician are able to spend with patients’ families, it is not unusual for families to be unaware of all that is going on, including prognosis and the efficacy or lack of efficacy of various treatment alternatives.

Physicians need to speak with the family directly in order to communicate the reality of their loved one’s condition, and the efficacy of treatment options. Unfortunately, our current medical ethics, legal realities, and financial reimbursement structure work against this type of ongoing communication. The Archives commentary has created a dialogue in the area of medical ethics. There are many other areas to address regarding the difficulties in caring for persons with advanced dementia.

William M. Lamers, Jr., M.D.