Something to Talk About

A recent study about end-of-life discussions in the Journal of Hospital Medicine is receiving some popular media attention. The study followed 365 patients in three separate hospitals from 2003 to 2009 who had a low or medium risk of dying within one year. Researchers reported that there were no changes in survival rates for those who had end-of-life discussions compared to than those who did not. Similarly, there were no changes in survival rates for those who had a living will versus those who did not. From the press release:

"Our findings are reassuring. They support health care providers, who can initiate these discussions, and policy makers, who seek to reimburse these time consuming discussions," said lead researcher Stacy M. Fischer, MD of the University of Colorado School of Medicine. "Most importantly, our findings are reassuring for patients and families who desire these discussions with their health care providers."

HFA supports patients having end-of-life care discussions with their doctors early and often. For more information on advance care planning and end of life, see our website.

Lunch 'n Learn Series Coming Soon!

Have you had a chance to register yet? Don't miss out on this exciting new program from Hospice Foundation of America.

On Wednesday, October 5, from 1 - 2 pm, EST, HFA will host its first Lunch 'n Learn webcast. This program, "The Hospice Appropriate Patient," goes beyond the traditional profile of a hospice patient to explore a wider array of hospice appropriate diagnoses and indicators.

Additionally, the program will offer ways your organization can work with the community to overcome barriers to seeking hospice care. Using this information, hospices and communities will be able to identify and serve more patients who could benefit from, but do not seek, hospice care. Panelists are Hank Willner, MD, and Jennifer Carlson, RN, CHPN, and they will be joined by Phil Carpenter, MDiv, from HFA.

Register now to see the live webcast and interact with the panel during a question and answer segment. Or, choose to watch the program at a time that better fits your schedule, up to one year after the initial live air date. Whichever you choose, registration is $85 per program for an organization or $35 per program for an individual. CEs for a wide range of professionals are available for an additional $10/person. Learn more about this and other upcoming programs in HFA's Lunch 'n Learn series.

Aging Challenges in the LGBT Community

Earlier this month, Manuel A. Eskildsen, MD wrote in the New York Times Cases column about the isolation often faced by aging LGBT seniors and his concerns treating members of that community as a geriatrician.

We know now that older gay, lesbian, bisexual and transgender people are more likely to be isolated socially than their heterosexual peers. They tend to be childless and may be estranged from family members, and often live with the enduring stigma that came with being anything but heterosexual in generations past.

Connectedness and a sense of community are vital human needs that, if anything, become more important as we get older. But by virtue of their frequent social isolation, many older gay people may be more likely in their later years to have little access to the very social networks that are important factors in successful aging. So, in a way, being old and gay can concentrate the biggest fears that many of us have about aging: that no one will care for us, and that we will die alone.

What can health care providers do to help? The task is complicated by the fact that these men and women may be all but invisible to us. Even people who were able to come out may find themselves retreating into the closet when they are forced to move into assisted living facilities or nursing homes. Health care providers must remember that just because a patient is old, he or she is not necessarily heterosexual.

Hospice Foundation of America has addressed this important topic through two webinars. The first, Aging and End-of-Life Challenges in the LGBT Community, is a free 30-minute program developed with the help of a grant from the Centers for Medicare & Medicaid Services. For those who work for an organization that serves older adults or individuals with life-limiting illnesses this program will prepare you to better serve the lesbian, gay, bisexual, and transgender individuals in your community.

The second archived webinar, Supporting the Lesbian, Gay, Bisexual and Transgender (LGBT) Community through Illness, Death and Grief, offers one hour of continuing education for a variety of professionals and is available until April 19, 2012. The program features Kimberly Acquaviva, PhD, MSW, of George Washington University, who discusses the challenges faced by this community and how organizations can better serve older LGBT adults and their loved ones. Kenneth Doka, PhD, MDiv, Senior Consultant at HFA, discusses the psychosocial issues faced by this community.

"Aging and death don't discriminate. Whether someone is heterosexual, gay, lesbian, bisexual, or transgender, everyone grows older," states Dr. Doka. "Yet during their lifetime, LGBT older adults have faced legal and societal barriers, and many older LGBT individuals may feel reluctant to seek and accept health care and social services."

World Alzheimer’s Day

Today is World Alzheimer’s Day. More than 5 million people live with Alzheimer’s disease and related dementias in the U.S. today, and this number is expected to grow even higher. And for every one person with dementia, there are numerous others in the picture, providing care as the disease progresses. When a person enters the final stages of Alzheimer’s disease, care needs become more intensive and demanding. Many people are surprised to learn that hospice is available to help care for people in the end stages of Alzheimer’s disease and other dementias.

As part of HFA’s Hospice Information Center, HFA developed this free webinar on Alzheimer’s Disease and Hospice Care. This program will help you understand how hospice helps persons with advanced dementia face the end of life with compassion and dignity.

Advancing Research on Professional Chaplaincy

The John Templeton Foundation recently announced a three-year, $3 million grant to HealthCare Chaplaincy to "advance scientific research on professional chaplaincy’s contributions to health and health care, particularly palliative care, which relieves suffering and improves one’s quality of life." From the press release:

The John Templeton Foundation is partnering with HealthCare Chaplaincy to:

• Select, fund and supervise about six interrelated and interdisciplinary national research projects to propose and test models, methods and measures for chaplaincy practice in the growing field of palliative care



• Close the research gap by establishing evidence-based standards of chaplaincy care practice in palliative care



• Team experienced behavioral and social science researchers with chaplains to develop their research skills



• Grow the number of skilled chaplain researchers by training, mentoring and supervising aspiring chaplain-researchers whose projects are not selected for funding through the competitive RFP process, but who, nonetheless, show considerable promise as researchers.

Upon learning of the grant, HFA's bereavement specialist, Phil Carpenter said, "It is tremendously exciting to see the steps being taken to support the wonderful work being done by chaplains in healthcare settings all across the country. This grant offers the opportunity to underscore the anecdotal evidence of how chaplains work as a valuable part of the health care team in all sorts of clinical facilities, providing compassionate, spiritual support to patients and their families, thus improving the quality of life for all involved. I believe this will have a positive impact on not just chaplains, but on all medical professionals."

HFA Staff and Consultants, Sharing their Expertise

HFA staff members and consultants are often invited by other groups to share their experience and expertise.

HFA's senior bereavement consultant, Ken Doka PhD, MDiv, will serve as a guest faculty member at the 15th Annual Interdisciplinary Conference on Supportive Care, Hospice and Palliative Medicine, sponsored by the University of Texas M.D. Anderson Cancer Center, this November 18-19.



Phil Carpenter, HFA Bereavement Specialist, will be serving on two panels in the next few months. He'll be part of a panel on the topic of Shared Voices: Mourning through the Lens of Various Faith Traditions at Sibley Memorial Hospital in October, and also a presenter at the Carlos F. Gomez Quality of Life for the Children Conference on pediatric palliative care in November.

Karyn Walsh, LCSW, HFA Social Worker, will be serving on the Leukemia and Lymphoma Society's Patient Services Committee for their National Office. The mission of The Leukemia & Lymphoma Society (LLS) is: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. LLS aims to give all people with blood cancer--at every stage of their journey--access to the information and services they need to fight and manage their disease.

If your organization is ever in need of a speaker or panelist, please contact HFA to see how we can help.

Interview with Elizabeth Clark, Executive Director of the National Association of Social Workers

Dr. Clark is a panelist on HFA's upcoming New Perspectives program. Early Registration ends today - September 14th! Register Now and Save! See a sneak peek below.

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Elizabeth J. Clark, PhD, ACSW, MPH, is the Executive Director of the National Association of Social Workers. Dr. Clark’s clinical specialty areas are oncology social work, and loss and grief.

Q. You serve as Executive Director of the National Association of Social Workers (NASW), the largest membership organization of professional social workers in the world. Can you tell our readers more about the work of NASW?

A. NASW was established in 1955 with a dual purpose: One goal is to further the field of social work, and the second goal is one that focuses on social justice, including social policy. The Association is committed to education and professional development for social workers. We are also just as strongly committed to advocacy—social workers are bound by our Code of Ethics to serve as advocates for those they serve.

Q. What are some of NASW’s initiatives in palliative and end-of-life care?

A. NASW serves on many coalitions with like-minded organizations, such as HFA and NHPCO to represent interests in end-of-life care. For instance, NASW is examining the Affordable Care Act, as are some of our partners, and its impact on palliative and end-of-life care. NASW has developed Standards of Practice for Social Workers in Hospice and Palliative Care Settings, and we are the only organization that credentials hospice and palliative care social workers.

We have recently become involved in the work of FHSSA, which is an organization that works to provide compassionate care in Sub-Saharan Africa; we are taking a group of social workers and nurses to Kenya next fall. Hospice in this part of the world has a much broader definition and serves as a social service agency, so this trip will be a great experience.

One new and exciting initiative that I am particularly proud of is the establishment of the Bernice Catherine Harper Scholarship Fund. Bernice is a renowned social worker who has dedicated much of her professional life to hospice and end-of-life care. She confided to me once that, when she was younger, she had always thought she would become a missionary in Africa. So, our work with FHSSA led to the establishment of this scholarship in her name, to help fund professionals in Africa to become educated in this field.

NASW also works closely with aging and disease-specific organizations. Much of our work is in areas like cancer, where unfortunately, a significant number of people with that disease will die. One area of focus for social workers is the issue of medical adherence.

Q. What are some of the concerns around this issue?

A. Social workers play an important role in helping patients with medication adherence (and please note, we prefer the concept of “adherence” as opposed to “compliance.”) Using the example of cancer medications—more treatments have moved from IV to oral treatment, but the chemotherapy regimens can be very strong and hard to follow. A major function of adherence lies in communication—if people really understand the ramifications of adhering, or not, to a particular regimen they are more likely to follow through.

Social workers are excellent patient educators. They are skilled at framing information to an individual’s specific context. For instance, a great amount of prescriptions are never actually filled. There can be many reasons why, and a common one is financial; the patient simply may not be able to afford it. Social workers understand the range of issues that patients face, and can be a resource to help get the medications they need or help connect them to programs that will help pay for the medications. If the issue is that the patient is not taking the medications properly, the social worker may consult with the pharmacist who can help the patient understand their medication regimen. I’m always proud to know that social workers have that ability and training to really see the person within his or her individual environment and respond accordingly.

Q. Those skills would seem to be particularly crucial when a patient is facing a life-limiting illness. How does the social worker help a patient and family cope with that experience? Has your own background in health care and social work, especially oncology, affected your outlook on the role of social workers in hospice and palliative care?

A. Social workers play a significant role from the point of diagnosis through the grief process, and not only in hospice care. Oncology presents a particular challenge; we are understaffed in the area of oncology social workers, and this issue will continue to grow. It is projected that by 2020, there will be 20 million people living with a history of cancer (currently, that number is about 12 million.) Social workers deal with cancer in every aspect of their practice; of course this will include, for many, palliative and end-of-life care. There is a real need for continuing to educate social workers about their role in helping patients and families cope with cancer at the end of life.

Social workers help people confront loss in a variety of ways. People coping with cancer may lose their ability to function in a way that is familiar to them; they of course may lose hair, or their ability to keep a job, or the role they played in their family. Social workers are well-equipped to help with these losses.

I also feel it’s critical to say that social workers have a role in helping people in these situations stay positive. I think we have underutilized the concept of “hope,” especially in the context of coping with a life-limiting illness. Hope, by definition, can never by “false;” social workers are trained to look at the therapeutic role that hope can play. They can help the person restore that sense of hope, or even reframe how they define and use it.

Q. One of the hallmarks of hospice care is the Interdisciplinary Team model. How does that model help support the social worker, and what do social workers bring to that team approach?

A. Just as social workers support patients and families, they also support other team members. When I was a practicing hospital social worker I used to hold a “psychosocial success conference” each month. This activity gave us a way to note those actions when a social worker did something that went above and beyond to help. A great example was about the man who couldn’t leave the hospital but was about to celebrate his 50^th wedding anniversary; the social worker stopped on her way in one day and picked out a card for him to give his wife.

Sometimes social workers don’t realize the importance of these acts, or don’t even stop to realize that this was a “success”—they just see a need and they work to fill it. One role that social workers can play on the IDT is to extend this understanding of “success” in serving patients and families.

Q. In a NASW job profile about hospice and palliative care social workers, I read that, “Self-care is vital to professional and personal sustainability in hospice and palliative care.” Although this work can be filled with the types of successes. What types of self-care can be most useful for a social worker facing grief and loss every day?

One ongoing concern in this profession is that social workers witness suffering frequently, and suffering changes us. We must continually find some way to integrate that suffering, both professionally and personally. Suffering can bring growth, but it’s critical to also consider the impact it can have.

The concept of self-care goes beyond preventing burn-out. In fact, I’m not convinced that any well-trained social worker ever really “burns out.” We know what it looks like when the work isn’t going well—that sense of helplessness or a feeling of low self-esteem. I always worry about a social worker when she or he won’t take time off, because there’s a perception that “no one can do my work while I’m gone.” I was fortunate to visit St. Christopher’s Hospice in London, and staff was required to take a one-week vacation every 12 weeks. That acknowledgment of the need to restore and regroup was always very impressive to me.

I also am concerned that there is not enough attention paid to the issue of Professional Grief. Professionals often form strong connections to those they care for, but yet when there is a death the role of the social worker is not seen as a griever.

Ken Doka’s work on disenfranchised grief is very relevant in these situations. One strategy that social workers can employ in this area is to know their own strengths and weaknesses. For instance, when my children were young I found that it was very difficult for me to work with dying children the same age. You need know your own strengths and -weaknesses; that can make you a better professional.

For social workers, it is really an ethical issue to admit what you can and cannot do. A true “balance” may never be possible. Social workers work with vulnerable people, and people in pain; this work is challenging and emotional. So there is a direct correlation between self-care and practice; a peer support network can be a vital way to work through these challenges.

Q. You are serving as a panelist for HFA’s upcoming program, “Beyond Kübler-Ross: New Perspectives on Death, Dying and Grief.” What do you see as an important message for social workers to extrapolate from an examination of past and current thinking on loss, grief and bereavement?

A. I entered this field in large part, because of Elisabeth Kübler-Ross. I heard her speak and she was absolutely remarkable, and she truly did inspire me as a young professional. She brought tremendous value to the field of death and dying, particularly in the emphasis she put on listening to the patient with compassion and dignity. She emphasized the importance of just having the conversation about death and dying.

And of course, even in her own book, she notes that did not necessarily intend for her Stage Model to have the linearity that has since been assigned to it. The major problem with that model is that it became prescriptive—this is what grieving people “have to” go through. And even worse, her original and pioneering focus on actually listening to the person has been lost—instead, many professionals simply impose the theory over the actual person.

Again, this goes back to what I see as the real strength of the social worker—the social worker listens, then helps each person to find his or her own path.

Q. How can social workers translate a more academic look at what is “new” in grief and bereavement and translate it into the day-to-day practice with patients facing the end of life and their loved ones?

A. I think sometimes people forget just how pervasive grief can be. I am continually appalled when I hear someone on TV say, “I am sorry for your loss.” This sentiment does such a disservice to what is truly the task, the work of grief which includes how you deal with loss, the tasks of grief and the restorative aspects of grief.

I have a teaching video I like to use in which a grieving mother talks about experiencing pain—physical pain—for over a year after her child’s death. She describes how, eventually, that pain shrank but that it was kept “in a chamber in her heart,” and that any time she could reach in and access it.

Grief is so multifaceted, and sometimes we underestimate the true impact it has on people. There is still so much work that needs to be done to help educate both professionals and the public about what grief really is.

And social workers have an important voice in this discussion. A professional team, supporting a dying patient and their family, is diminished without the presence of a trained social worker. I am proud of the work that NASW does to ensure that social workers continue to have a strong role in end-of-life care.

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Elizabeth J. Clark, PhD, ACSW, MPH, is the Executive Director of the National Association of Social Workers (NASW). Dr. Clark’s clinical specialty areas are oncology social work, and loss and grief. She is the founding editor of the journal Illness, Crisis and Loss, and is the editor of several books including Social Work in Oncology: Supporting Survivors, Families, and Caregivers, published by the American Cancer Society. She is the project director for the Cancer Survival Toolbox^®, a self-advocacy training program for persons with cancer, which is sponsored by the National Coalition for Cancer Survivorship (NCCS). She sits on the Board of Directors of C-Change, Collaborating to Conquer Cancer, the Leukemia and Lymphoma Society, and the Foundation for Hospices in Sub-Saharan Africa. She is past president of NCCS, and past board member of the National Hospice and Palliative Care Organization. Dr. Clark received the Leadership in Oncology Social Work Award from the Association of Oncology Social Work, a Ray of Hope award from NCCS for her work on the Cancer Survival Toolbox^® and the DeWitt Clinton Masonic Award in Community Service for her work in cancer survivorship. Dr. Clark holds a Bachelor’s and Master’s degree in social work and a Master’s of Public Health from the University of Pittsburgh, as well as a Master’s and Doctorate in medical sociology from the University of North Carolina. She is a recipient of an Honorary Doctor of Humane Letters degree from Wartburg College in Iowa for her work on social justice.

Caregiving Up Close

Judith Groch writes in the New York Times about the difficulty caregivers can have knowing that their loved ones are nearing the end of life:

Suddenly my new cellphone rang. In my world, a ringing phone was rarely good news. Bill’s doctors were on the line. “Please, please,” they urged. “Bill is refusing to go to dialysis. You need to talk to him. He’ll listen to you.”

So there, while the sun glittered, the white clouds danced and children tumbled all around, I got on the phone with Bill and started pleading, then demanding. In a weak voice, Bill said he was not going. He wanted life, but that morning he did not want to go to dialysis. So I got tough and said he absolutely had to go. That was my job as assigned by the doctors. Back and forth we went until finally I prevailed. With his aide’s help, Bill got into his wheelchair and departed with the ambulette driver. I had saved the day. The doctors thanked me, and we hung up.

For a moment, the beautiful spell broken, I stood there shaken: one foot in the world of grass and mountains, the other in the ominous, gray hospital world. Then I put the phone away and headed back to the horse show.

But — and it is a very big but — for years now I have wondered what I had failed to understand that day. Bill was getting cantankerous and didn’t want to do what was right for him. I had to be strong and “stick with the program.” I was the only one who could do it.

What had I missed? Looking back, I didn’t grasp that not only was Bill sick of dialysis, but he was protesting the quality of life it maintained. He never said he did not want to live anymore, but paradoxically he also was suggesting that he no longer had the courage to be a dialysis patient. Although Bill was not talking about giving up and dying, somewhere the spirit in this brave, brilliant man was fading.

I was so close I couldn’t see it.

Many people who are caring for a terminally ill person have never done it before. HFA’s bereavement and medical experts A Caregiver’s Guide to the Dying Process can serve as a sensitive, helpful resource for families. A Caregiver’s Guide prepares caregivers by discussing both the physical symptoms of dying and the psychological issues that accompany the dying process. It may also be used by hospices and other end-of-life organizations as a helpful training aid for staff and volunteers.

A Caregiver’s Guide to the Dying Process is now available for purchase at our online store. Individuals and families may order a maximum of three (3) guides, free of charge, but please note that shipping charges will apply. Bulk orders are available in packages of 50 or 100 to organizations that wish to distribute the guide among their patients and families.

Dealing with 9/11 - Ten Years Later

As we approach the anniversary of the 9/11 events, perhaps you are thinking about how it will affect you personally, and how it might affect the patients and families your organization is caring for during this time. Memorial services, recognitions and other community pograms are likely to be all around us. How might these pictures, speeches, and images affect hospice patients and their families, especially their children?

Read this helpful tipsheet from HFA for more information.

Kübler-Ross in the Media

Although research around how people grieve has evolved significantly since Kübler Ross wrote about dying and grief some 40 years ago, her name and theories are still referenced in popular media and have become engrained in our culture, as in a recent New York Times piece about the Real Housewives of Beverly Hills:

The tragedy was dealt with in an opening addendum: Two weeks after Mr. Armstrong’s death, all the Beverly Hills housewives except Taylor gathered at Adrienne’s mansion to address the suicide over hot beverages and chilled white wine. The women expressed anger, denial and acceptance — not grief, but a Kübler-Ross model of limited liability for the show.

“I never saw any sign of it,” Kim said.

Adrienne chimed in, “I don’t think any of us saw any sign of it.”

Kyle said: “All he ever wanted to be was a successful venture capitalist. When it went all down the tubes, it was too much pressure.” Kyle’s husband, Mauricio, shared his anger, saying he felt that suicide was “a very selfish act.”

HFA takes a hard look at what we know today about death, dying and grieving in Beyond Kübler-Ross: New Perspectives on Death, Dying, and Grief.

Hurry! Early registration for Beyond Kübler-Ross ends September 14th! Register today and save!

HFA Answers CMS Call for Comments

HFA answered a Centers for Medicare and Medicaid (CMS) Call for Comments on the importance of Hospital Discharge and Care Coordination for Medicare beneficiaries, including frail older adults, who transition from the hospital setting to a community setting. HFA encouraged and recommended that CMS further study the valued role of quality care coordination that goes into the discharge of a hospital patient into a community setting, especially as it pertains to the transition into hospice care. HFA commented that our Foundation interfaces with hospice patients, their loved ones and professionals involved on both sides of a hospital patient being discharged into hospice care. Often, the transition from hospital to hospice care is hurried and overwhelming for both patients and families and the health care professionals involved in the care coordination. HFA encourages CMS to undertake regulatory and developmental continuity and standards that would greatly help very sick people who must move around the health care system.

Read the letter here.