Monday, May 15, 2017

Improving End-of-Life Care for African-Americans through Advance Care Planning in Partnership with Faith Communities

Leslie McNolty
The Center for Practical Bioethics has worked on end-of-life issues and advance care planning for more than three decades. Over the years, we’ve been enlightened and encouraged by the six reports that the National Academy of Medicine has issued on palliative and end-of-life care in the USA. These reports clearly establish that palliative care and hospice are essential to address suffering and quality care for the seriously and terminally ill. Research also shows that improving shared decision-making processes, such as advance care planning, provide a path to greater satisfaction for families experiencing the death of a loved one. We know that individuals who complete advance directive documents are more likely to have their preferences for end-of-life care respected -- particularly the preference to die at home in hospice care. 

We also noticed with increasing alarm that African-Americans typically do not share in the benefits of advance care planning, palliative care and hospice care to the same extent that white Americans do. Statistics from the National Hospice and Palliative Care Organization consistently show severe underutilization of hospice by African-Americans – whites make up more than 80% of hospice utilization on a national level, with African-American utilization at about 8%. This disparity in hospice and palliative care utilization is particularly striking because African-Americans die at excessive levels from chronic diseases. 


Barriers and Opportunities


Unfortunately, there are significant barriers to implementing advance care planning tools in African-American communities. Many harbor a deep distrust of the traditional healthcare system stemming from egregious ethical violations in the past. Furthermore, African-Americans, who according to Pew Research Studies are know the most religious racial group in the USA, have significant religious concerns about advance care planning. For example, a survey of 205 African-American patients showed that “African-Americans were more likely to express discomfort discussing death, want aggressive care at the end of life, have spiritual beliefs that conflict with the goals of palliative care, and distrust the healthcare system.” 

Fortunately, despite all of this, a seminal report funded by the California Health Care Foundation in 2007 found that, although minority communities in California have done less advance care planning than whites, African-Americans had fewer negative attitudes about the general concept of advance care planning than do any other racial-ethnic group.5 

Nine Churches in Six Cities


In November 2015, the Center began a two-year project to work with religious communities to address advance care planning in African-American communities. With funding from the John and Wauna Harman Foundation, we partnered with VITAS Healthcare to recruit nine churches in six cities to work on advance care planning in their congregations. These churches designated advance care planning (ACP) ambassadors to teach about and advocate for advance care planning within their congregations.  

In Chicago, Dallas and Kansas City ACP Ambassadors focused first on reaching out to the clergy in their churches by making presentations at regularly scheduled work meetings. Teams in Atlanta, Philadelphia and West Palm Beach have worked through the different ministries in their churches to make presentations and organize events. At each event, Ambassadors asked the audience to commit to having a conversation about end-of-life care with their families. They also provided materials and additional information upon request following the presentation. In total, church teams organized 19 events that reached nearly 700 people. More than 200 attendees committed to having conversations with their family members about advance care planning and end-of-life care. Nearly 100 individuals approached the presenters for more information and discussion following the event. 

Crossing Over Jordan Conferences


ACP Ambassadors and VITAS Healthcare community liaisons in Atlanta, Chicago, Philadelphia and West Palm Beach each organized a half-day Crossing Over Jordan Conference to celebrate the conclusion of their six-month project and encourage other organizations in their communities to promote advance care planning. Nearly 500 community members attended these conferences, including representatives from local hospitals, assisted living centers, home health services, professional medical associations, community organizations and African-American churches.

The Crossing Over Jordan conferences were designed to exchange basic medical information about end-of-life care, as well as to celebrate the activities of the programs in traditional African-American church traditions that included music, singing, dancing and the spoken word performances.  There were also remarks from pastors and spiritual leaders connecting the idea of advance care planning with biblical scripture, and a contemporary theological exploration justifying the practice. Attendees of the Crossing Over Jordan conferences were encouraged to speak to their families and friends about advance care planning, and were told that they can rely on ongoing connection to the Center for Practical Bioethics and Vitas for resources on advance care planning in their communities.

The Center remains committed to improving end-of-life care for African-Americans by promoting advance care planning. We are planning the next stage of this project and look forward to meeting with our partners and other stakeholders in the next few months. 



i Able J, Pringe A, Rich A, Malik T, Verne J.  The impact of advance care planning of place of death, a hospice retrospective cohort study.  BMJ Supportive & Palliative Care 2013;3:168–173.
ii NHPCO’s Facts and Figures: Hospice Care in America, 2014 Edition, p. 5
 iii Rodriguez, J.M., Geronimus, A.T., Bound, J., Dorling, D. Black Lives Matter: Differential Mortality and the Racial Composition of the U.S. Electorate, 1970-2004.  Social Science and Medicine, 2015; 136-137 and 192-199
 iv Johnson K, Kuchibhatla M, Tulsky J., What Explains Racial Differences in the Use of Advance Directives and Attitudes Toward Hospice Care? Journal of the American Geriatrics Society 2008;56(10):1953-1958
 v Crawley L, and Kagawa-Singer M. Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California, California Healthcare Foundation Report, March 2007.   


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Sunday, April 23, 2017

Reflections on the Life of Beth Smith

Written by Linda Doolin Ward and Myra Christopher

Linda’s Reflections 


Beth Smith
I met Beth Smith after Terry and I returned home to Kansas City after six years in New York and New Jersey. In 1981, when she and Marjorie Allen along with the other 10 founders of the Central Exchange were looking for help to break through the 160-member barrier, they asked several people to help identify candidates. Jody Craig and I had become acquainted through Kansas City Tomorrow and she suggested they talk with me. The fledgling CX’s financial prognosis was grim. Dorothy Johnson was keeping the books immaculately in a Harzfeld’s box under her bed and the books showed a growing problem. They had reached 160 members, but breakeven was 225, and the math was simply not working. They were stuck. I was dazzled by these women and the concept and I said yes.

Working with these twelve amazing women and the early members they had attracted in the first year was a great joy. Beth Smith and Marjorie Allen were clearly in the lead of this pack of leaders on a mission. I was in constant contact with one or both. Beth was the steady advisor, encouraging Marjorie at every step. Marjorie was relatively new to Kansas City and Beth, the consummate guide, was an enthusiastic tutor. The Central Exchange began to grow quickly and with our plans for the new location at 10th and Central in the old Fire Station, many new members joined and stayed.

When Marjorie heard a 60 Minutes program on Lupe Anguiano in Texas who was helping women become self-sufficient, after she and Beth talked it over, the Women’s Employment Network was born. They were both excited about this powerful concept, and we all worked hard to create this great organization that thrives today.  When Marjorie was diagnosed with cancer, she talked with Beth about the need to ensure the future financial viability of WEN. Some others had also been thinking about a financial resource for women and, once again, the two of them brought all the interested women together to create the Women’s Foundation, which also thrives today.

While the Central Exchange, the Women’s Employment Network and the Women’s Foundation were continuing to grow, I had an opportunity to join Payless Cashways. David Stanley had called Beth and asked about me. Beth must have said something good, because that launched the next 15 years of my work life. But while I was working at Payless and over the years after that, I stayed involved in all three of Beth and Marjorie’s creations off and on.

Fast forward five years after Payless—I had an opportunity to join what was then Midwest Bioethics Center. Again, Beth and I were involved in the same cause. For the next almost decade, Beth was a steady advisor and friend. We joined each other for lunch and shared all that was going on. She gave advice, calmed fears, told me I was doing a great job and otherwise provided the inspiration needed for anyone working for a cause. No other single person outside my family has been as consistently intertwined with my work and volunteer life as Beth Smith.  I cannot adequately express the importance of her influence in my life and I will carry her with me always.

Myra’s Reflections


Beyond a deep sense of loss, the thing that saddens me most about writing this tribute to Beth Smith is that many who read it will never have known this remarkable woman.

I met Beth approximately 30 years ago as the director of a brand-new not for profit, Midwest Bioethics Center (now the Center for Practical Bioethics). She was an icon in the non-profit sector of our community. She was so revered that I was quite intimidated by her. I've never been sure how or why I was invited to a "plowshare leadership retreat" at the Wildwood Outdoor Education Center with a handful of other young/new not-for-profit leaders including: Joan Israelite who became the development director of the Boys and Girls Clubs, Connie Campbell who became director of the Learning Exchange, Alan DuBois, director of the Genesis School, and Gary Baker, director of Crittenton Center, all of whom stayed in the not-for-profit community and went on to make Kansas City a better place.

In my lifetime, I'm confident that I have attended at least a dozen leadership training programs. I have only the vaguest memory of most of them now, but not so with Plowshare. This was a turning point in my personal and professional life and the future of the Center for Practical Bioethics.

The difference between Plowshare and the other programs is easy to pinpoint -- it was Beth Smith. It was her belief in the potential of those she had handpicked to attend, the significance she placed on the non-profit sector to our civil society and the importance of well-run not-for-profit organizations, especially those with strong governance structures and financial accountability.

While at Wildwood, Beth said to me, “When the time is right, I will serve on your board.” Rather than being put off by her assertiveness, I was thrilled to death. I remember thinking, “OMG! She thinks the Center has a future. She thinks we can actually pull this off." Frankly I've been to the point that even I was not sure, but I knew if Beth Smith understood the importance of our mission and was willing to help, others would follow.

Beth served on our board for six years and was the toughest board member under which I ever served. She always asked the hardest questions. She knew when I was trying to bluff a response.

Over the years, Beth and I became close friends and she became one of my most trusted confidants until Alzheimer's took this woman's genius from us.

Although Beth hadn't recognized me for some time, she held onto a memory of the Center and associated herself and me with it. On my very last visit, the first thing she said to me was, “So tell me about the Center.” Anyone who knows me knows there is nothing I like to do better.  When I paused, she said again, “So, tell me about the Center.” We spent an absolutely delightful afternoon having a perfectly circular conversation, and because of Beth Smith's wisdom, guidance and enduring love, there was much about which to tell her.

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Tuesday, April 18, 2017

Kathy Greenlee’s Reflections on Paths to Person-Centered Planning

Challenging Us to See the Whole Person at All Stages of Life

Kathy Greenlee, VP for Aging and Health Policy


The Center for Practical Bioethics hosted the Joan Berkeley symposium on Thursday, April 6. The title for the day was “Paths to Person-Centered Planning.” In planning the event, my objective was to focus on tools and techniques grounded in a disability policy perspective that could benefit healthcare professionals and bioethicists. The day brought articulate and engaged speakers, raised new questions, introduced different language, and ultimately affirmed the strength of a multi-disciplinary approach to supporting people and their families as they face serious illness and end of life. 

Four distinct concepts emerged:
1) the perspective of the person as patient,
2) similarities and differences between shared decision-making and supported decision-making, 
3) the balance between what is “important to” a person and “important for” a person, and
4) the need to see a patient within the context of their family, however defined.

Person-Centered Communication


The panelists who opened the day demonstrated the importance of listening to people and the first speaker stole the show. 

Cathy Enfield, member of Self-Advocates Becoming Empowered (SABE), is an articulate adult woman with a developmental disability. She uses an iPad for communication assistance. She gave a first-person account of having healthcare providers look past her and talk directly to her caregiver. 

To communicate, Cathy needs support. Yet, public policies ranging from transportation to healthcare create barriers and financial disincentives that require her to be accompanied by someone to assist. Cathy’s comments were so compelling one of the medical educators in the audience intends to make them required reading for his first-year medical students. The problem of being looked past was affirmed in the afternoon when we discussed caring for someone with Alzheimer’s disease. The stigma surrounding dementia is so severe, patients who can communicate often become invisible as conversations shift to the caregiver only.

Negative Stereotypes


Each of the successive panelists raised important considerations. Mike Oxford, executive director for policy, Topeka Independent Living Resource Center, talked about living with chronic pain for more than 20 years. He worries that the focus on the opioid epidemic is making it more difficult for patients to get access to much needed medicine, understanding medicine is one of a variety of approaches for managing pain. Mike’s comments resonated with the Center’s work on chronic pain and the PAINS Project. 

Jean Hall, professor, Department of Health Policy and Management, University of Missouri-Kansas City and director, Institute for Health & Disability Policy Studies, is a person with multiple chronic conditions who received discouraging and inappropriate comments during her high-risk pregnancy when carrying triplets. As a researcher, she has documented lack of adequate prenatal care for woman with disabilities. 

Tyrone Flowers, a gun-shot survivor and Founder and president of Higher M-Pact, talked about the amplified issues of being an African-American male going through physical rehabilitation at the age of 18. During voc-rehab he was consistently funneled to vo-tech programs. Assumptions about his future reflected the circumstances of his childhood, not the talent he would display by graduating law school.

Shared vs. Supported Decision Making


What if your life decisions were called into question by people close to you? If the quality of your decision-making was challenged? If people started collecting evidence that you may be losing capacity?

These were the opening questions posed to us by Tina Campanella, CEO with Quality Trust for People with Disabilities in Washington, DC. People with disabilities and older people face these realities all the time. Human decision-making is complex and capacity to make decisions fluxuates. As we support other people, we need to think about how to make the most of someone’s abilities. We need to presume capacity and build from there. If we don’t presume capacity, we won’t go looking for it.

The fundamental element of supported decision-making is autonomy and control. Placing a person in the driver’s seat of their life. Dignity is the reason you presume capacity because it is important to recognize every human being has value and worth. Tina’s remarks about shared decision-making versus supported decision-making prompted a lively exchange with the audience. 

Shared decision-making comes from the healthcare field. However, sharing, by definition, means there are two loci of power: the patient and the provider. Supported decision-making presumes the person is in charge of their life. Professionals provide expertise and recommendations, but the ultimate decision-maker is the patient. The issue left unresolved is the impact on the moral agency of the healthcare provider in a supported decision-making scenario. What is the impact on the healthcare provider’s duty of care? Of the many concepts discussed, these differences in approach to decision-making are likely to generate the most additional thought and conversation. 

Patient Centered Care vs. Person-Centered Planning


The concepts of patient-centered care and person-centered planning are compatible but not interchangeable. 

Each of us are patients for only part of our lives. Robert Sattler, partner with Support Development Associates showed us a variety of documents that reflect a person-centered plan. Imagine taking a sheet of paper and some colored markers. Draw a big cartoon balloon and in it describe what you like and who is important to you. Then in another balloon, list things you don’t like. And for the third section, describe medical information that is important for others to know. In this simple manner, it is possible to capture the essence of someone in a way that is much different than an electronic health record. 
The core concept in person-centered thinking is to create a framework for identifying what is important to people while also identifying what is important for a person. For high-risk patients, professionals often focus on what is important for that person, motivated by a concern for health and safety. But a sole focus on health and safety – patient-centered care – overlooks what is unique about a person and what makes them happy. Person-centered planning challenges us to find the right balance; for someone to be both happy/satisfied and healthy/safe. A person will not do what important for them unless there is a connection to what is important to them. 

Family Relationships


All of us are part of a family, however defined, and a community. Our relationships to other people and our environment are ours to steer and something we take for granted. Michelle Reynolds (Sheli), director of the Individual Advocacy and Family Support for the Institute for Human Development at the University of Missouri-Kansas City, discussed the importance of family in relationship to a person with a disability of any age. 

Often a person with a disability needs supports with basic activities, from personal care to social engagement. However, those supports can also surround a person in such a way that they impede relationships with family, friends and community. The supports can end up defining someone’s life. After working with hundreds of people with disabilities and their families, Sheli developed a Charting the LifeCourse tool to help people plot a full and meaningful life.

The tool captures aspects of life most of us never focus on, yet each of these life domains add unique value and opportunity to the experience of life. The six domains are:
1) daily life and employment
2) community living
3) safety and security
4) healthy living
5) social and spirituality
6) citizenship and advocacy

Charting the LifeCourse reflects a core belief that all people and their families have the right to live, love, work, play and pursue their life aspirations in their community. We have a tendency to segment people based on a label. To change policy and practices, we need to think and talk about all people. All people need the six domains of daily life. For persons with disabilities, the strategy for incorporating those domains may be unique. But, then again, that is true for each of us.

The Bioethics Connection


How do these concepts fit into bioethics? Our very own Richard Payne, John B. Francis Chair at the Center for Practical Bioethics and the Esther Colliflower Professor of Medicine and Divinity at Duke Divinity School, Duke University, spoke and recalled the panel of consumers who began the day. How do we really see people? 

As a medical educator, he asks students if they can really see the person in front of them. He uses pedagogical exercises to teach this lesson. 

Don Reynolds, assistant research professor and director of the Office for Responsible Research at the University of Missouri Center for Health Ethics, as well as a Center for Practical Bioethics Fellow, provided continuity to the past and future. He has worked with the UMKC Institute for Human Development and the Center to bring attention to the need for advanced illness care planning for people with developmental disabilities. He has personally seen the continued evolution of patient centered care and believes we are on the right track to make person-centered planning work.

As we engaged in audience discussion at the end of the day, it was clear we had been challenged to see the whole life of a person in relationship to their healthcare at all stages of life. We reconnected with colleagues and met new people. We concluded the day by talking with Lex Frieden, professor of biomedical informatics, professor of rehabilitation at the University of Texas Health Science Center, and one of the pioneers responsible for the Americans with Disabilities Act.

In the end, we all experience the challenges and opportunities of life. Adding new voices and concepts to healthcare and bioethics conversations will enrich us all. 

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Tuesday, March 7, 2017

Secretary Kathleen Sebelius Presents Big Ideas in End-of-Life Care

By Kathy Greenlee, JD
What are the “big ideas” in end of life care? The Aspen Institute Health Strategy Group (AHSG) is helping to answer this question.

In 2016, AHSG selected end-of-life care as the subject of their year-long research. The effort was co-chaired by former Health and Human Services Secretaries Kathleen Sebelius and Tommy G. Thompson. Aspen worked with leaders in the field, sought public input and documented their findings in a recently released report titled, “Improving Care at the End of Life.” The Center for Practical Bioethics offered ideas as part of the public input process, a fact noted in the Preface to the report.

We are excited that former Secretary Sebelius will provide a keynote address at our Annual Dinner, April 5, where she will discuss these ideas and her role as co-chair of the project. Additional information about the Annual Dinner can be found on our website.

Practitioners will be encouraged to see the scope and depth of the AHSG five recommendation. They are:

Build the development and updating of an advance care plan into the fabric of life.

Redefine Medicare coverage in a way that meets the complex needs of people with serious illnesses.

Develop a set of quality metrics related to end-of-life care that can be used for accountability, transparency, improvements and payment.

Increase the number and types of health professionals who can meet the growing needs of an aging population.

Support model communities embracing fundamental change in the design and delivery of care for people with advanced illness.

Four background papers are included as the second part of the report:

Overview of the End-of-Life Experience in the United States, by Laura C. Hanson, M.D., M.P.H.

Care at the End of Life, by Diane E. Meier, M.D.

Financing Care at the End of Life: Ensuring Access and Quality in an Era of Value-Based Reforms, by Haiden Huskamp, Ph.D. and David Stevenson, Ph.D.

Doing Right by the Seriously Ill: Ethical Norms for Care Near the End of Life, by Mildred Z. Solomon, Ed.D.

You can find this report online at https://assets.aspeninstitute.org/content/uploads/2017/02/AHSG-Report-Improving-Care-at-the-End-of-Life.pdf


Kathy Greenlee joined the Center’s staff as Vice President for Health Policy and Aging in November 2016 after serving the past seven years as Assistant Secretary for Aging in the U.S. Department of Health and Human Services.

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