The concept of bioethics was relatively new in 1984 when Mary Beth Blake, an in-house attorney at the University of Kansas Medical Center, Dr. Karen Ritchie, a family practice physician and psychiatrist, and Dr. Hans Uffelman, a philosophy professor at the University of Missouri-Kansas City, founded the Midwest Bioethics Center, now the Center for Practical Bioethics.
Back then, most of the half dozen existing ethics centers were based in academia and focused on theoretical issues. At the same time, ethical dilemmas presented by accelerating advances in medicine and technology increasingly galvanized public attention and professional concern:
In founding the Center, they adopted three bedrock principles:
Advanced Illness and Shared Decision
Making – With the population aging
and living longer than any generation before, the need for advance care
planning has never been greater. CPB needs financial support for Caring
As current Board Chair, I turn to one of my predecessors, James Spigarelli, PhD, who explains in this essay how his passion for the Center evolved
from professional admiration to personal gratitude:
As CEO for many years of Midwest Research Institute (now MRIGlobal), I was aware of the excellent work of the Center. But after experiencing the death of my daughter from cancer, the Center’s long history of helping families with the most difficult medical decisions became personal for me, and I began to learn more about its accomplishments and impact locally and nationally.
Early on, the Center published the first voluntary community HIV standards in the US and counseled both sides in Nancy Cruzan vs. Director, Mo. Dept. of Health, the first “right to die” case reviewed by the Supreme Court. Sen. John Danforth asked for the Center's help in developing the Patient Self-Determination Act.
By the 1990s, national groups sought the Center out for guidance and assistance. The Robert Wood Johnson Foundation chose it to direct an $11.25 million program on community-state partnerships to improve end-of-life care.
The 2000s brought into focus the Center’s efforts to ensure that loved ones get the care they need and want. Caring Conversations®, which guides family and friends through the advance care planning process, has reached hundreds of thousands. The Center leads a bi-state effort to achieve provider adoption of Transportable Physicians Orders for Patient Preferences (TPOPP).
It provides excellent opportunities to learn about and practice bioethics. Our KC Regional Hospital Ethics Committee Consortium remains the longest running consortium of its kind in the nation. Each year, we attract hundreds to symposia.
Looking back at back at my personal experience as father, advisor and caregiver to our daughter, I appreciate the value of the Center’s work at every stage of her struggle with cancer – from diagnosis, to various levels of treatment, to hospice care and death at 45 years of age. Each stage of illness presents the patient, family and caregivers with a complex set of decisions for which they are ill prepared and inadequately supported by our current healthcare system. The Center’s work truly makes a difference. That’s why I am proud to serve as chair of an organization whose work has literally touched millions of lives nationwide.
The Center helps thousands each year to prepare for the
uncertainties of advancing illness and to make their end-of-life wishes known
using proven tools:
2016, we put a tracking system in place so we know how many Caring
Conversations® – our individualized guide to making healthcare wishes known – and
other advance care planning resources – we have put in the hands of people
seeking help in order to monitor future improvement. We will provide and track
these resources distributed free online, as well as bulk orders by healthcare
providers. We will distribute and track numbers provided at community
workshops, and the many more at workplace programs and in African American
faith community settings. Eighty percent of workshop survey respondents will
say that they plan to complete an advance care plan. We will promote
development of new TPOPP coalitions, continue to train and provide technical
assistance to established coalitions, and design tools and metrics for quality
shows that Advance Care Planning (ACP) and physician orders that reflect
patient preferences improve patient outcomes and satisfaction at the end of
life. Improving the availability, access and training on use of ACP resources
will broaden their impact, reliability, transportability and effectiveness. It
will also reduce impediments to achieving goals of care in a fragmented system.
Shifts in thinking that accompany training and use of these resources and
emphasis on shared decision-making move all stakeholders towards appreciation
and expectation of a family and community experience as opposed to a tragic
episode of care. Our long-term goal is to base this movement on principles
similar to those employed in the successful hospice and palliative care
movements over the last 30 years. Engaging in meaningful shared decision-making
with knowledge of the preferences and values of the patient will aid is in
improving these experiences for all persons involved.
ADVANCE CARE PLANNING EDUCATION:
GOALS OF CARE FOR THE SERIOUSLY ILL:
Since Caring Conversations® was developed in 2001, we conservatively estimate that hundreds of thousands of CC workbooks have been distributed through print and website downloads. Hallmark renewed its Caring Conversations® in the Workplace contract
for the 6th year, KCPL has adopted it for 2017 and more companies
are considering adding the program to their employee benefits package. We have
held 15+ advance care planning education sessions within the African American community. Two-dozen+ communities have
implemented or are pursuing TPOPP coalitions.
recognized from its start that helping patients and families sort through
real-life healthcare issues with practitioners in real time requires
professionals equipped with critical thinking skills, sound judgment and
understanding of principles of ethical inquiry. Today, people and institutions
throughout our region look to the Center for leadership in bioethics education.
We will develop
preliminary plans for design of the KC Consortium for Bioethics and Humanities,
such that medical student enrollment will be on track for 2018/19. We will
continue our contractual relationships for ethics education at KCU and Kansas
City University Medical Center, and for clinical ethics education at the
University of Kansas Hospital. We will continue to lead the Hospital Ethics
Committee Consortium with average representation from 30 area hospitals. We
will expand access to thousands of print, audio and video resources and add new
ones to our website.
The Kansas City
Consortium for Bioethics and Humanities will enroll medical students and other
health professionals and share faculty and curricula in medical humanities,
history and philosophy of medicine and health policy, and bioethics education
and training for clinical ethics consultation. KCU’s Bioethics program will be enrolled
at maximum capacity with highly satisfied students, with improvements from
feedback incorporated into future offerings. The Hospital Ethics Committee
Consortium will gather regularly for members to learn from each other,
encourage a culture of inquiry and mutual support within their institutions. As
funding to support website development is secured, traffic to our site (155,545
page views in 2015, including 15,161 for case studies alone) will grow
dramatically, particularly from educational institutions, of which more than
100 already use our resources.
The KC Consortium
for Bioethics and Humanities will make progress in designing plans. We will
regularly consult with partnering organizations, members, faculty and students
through surveys and informal meetings to determine what information is useful
and ways to improve. We evaluate attendance at bi-monthly Ethics Consortium
meetings, which typically represent some 30 hospitals and seek feedback from
participants on an ongoing basis. We expect a total 700-800 people to attend
lectures and symposia in 2016. We will continue to see a steady rise in website
been reached among Kansas City’s three area medical schools to develop the KC
Consortium for Bioethics and Humanities. We provide ethics consultation
services involving hundreds of patients for the University of Kansas Hospital,
a 700-bed teaching hospital. Since taking the lead of KCU’s bioethics program,
we have revamped the school’s ethics curriculum and significantly increased MA
in Bioethics enrollment, with 50% growth in dual degree cohort over 2014.
Center staff has provided ethics instruction and workshops for medical
students, nursing students, graduate students, residents, fellows and staff physicians.
We receive at least weekly inquiries from around the world seeking permission
to use resources posted on our website.
The Center puts
bioethics into action. We have a proven track record (HIV/AIDS, Patient
Self-Determination Act, stem cell research) of bringing diverse groups together
to work collaboratively. Ultimately, we seek to bring about systemic change
that achieves better outcomes for all.
CHRONIC PAIN- The
Center will implement “Making Pain Visible,” a pilot project in Kansas City to
raise awareness and de-stigmatize chronic pain. We will seek funding to measure
increased understanding of impact of chronic pain.
National Pain Strategy Report will be funded and implemented by DHHS. Current
dialog regarding chronic pain, substance abuse and the relationship of chronic
pain to both audiences will be reframed.
will measure impact of Making Pain Visible by increased participation in
PAINS-KC, as well as implementation of additional community-based initiatives
across the country.
Because the Center's mission is to raise and respond to ethical issues in health and healthcare, we have a combination of continuing programs such as our education, consultation and resource efforts, as well as programs that develop around a specific need or emerging issue.
Such issues present themselves every day, across the country, affecting millions. What is brain death? When is artificial hydration and nutrition appropriate? What about resuscitation? Genomic testing? The issues are endless.
Our mission requires the Center to be knowledgeable on a vast range of subjects, as well as capable of responding quickly, practically and effectively. Indeed, virtually all of our programs – from developing one of the nation’s earliest standards of treatment for HIV/AIDS in 1987 to developing an ethical framework for Learning Health Systems – have sprung from real-life issues and problems that have arisen in communities and bedsides across the country. The under-treatment of pain, for example, has been a focus of the Center for more than a decade, but when the Institute of Medicine issued a report on this important topic in 2011, it was elevated to the national stage. The Center is experienced at seizing opportunities to advance a cause when public attention is focused there.
John G. Carney, MEd, was appointed the second President and CEO of the Center for Practical Bioethics in December 2011. John’s policy and advocacy work has entailed testifying in state capitals, co-authoring a report to Congress on advance care planning, and working with the Centers for Disease Control and the National Institutes of Health on improving end of life care for all Americans.
The Center maintains a variety of formal and informal relationships with academic institutions, healthcare organizations, patient advocacy groups, community and state-based coalitions and national organizations. Examples of local organizations with which we collaborate include Kansas City Area Life Sciences Institute, Frontiers: The Heartland Institute for Clinical and Translational Research, all three Kansas City regional schools of medicine (Kansas City University of Medicine and Biosciences, the University of Kansas School of Medicine and the University of Missouri, Kansas City School of Medicine), as well as Children’s Mercy Hospitals and Clinics, Saint Luke's Health Systems, HCA Midwest, and other hospitals and medical centers. Nationally, the Center collaborates with American Bar Association’s Commission on Law and Aging, National Association of Attorneys General, Federation of State Medical Boards, Centers for Disease Control (CDC), and the Coalition to Transform Advanced Care (C-TAC), to name a few.
Taking on some of the most difficult and complex healthcare issues of the day can be challenging for a small, independent nonprofit, especially when those issues involve large multibillion dollar corporations employing vast numbers of employees serving millions of patients a year. Still, the Center has managed to provide not only a prophetic but authentic voice for patients and families who face the most difficult challenges imaginable in an often fragmented health system.
The Center for Practical Bioethics maintains a unique position among bioethics centers in the country serving as the only independent, community based not-for-profit entity specifically devoted to serving the practical needs of patients and families involved in real life situations. Although we tackle some of the most complex issues confronting our society in health and healthcare through research, consultation, scholarly publications, conferences and teaching, we do so in an applied fashion. One of the most valuable contributions the Center makes is addressing the ethical concerns raised by patients, families, healthcare professionals and policy makers in real-life situations.
Indirect Public Support HelpIndirect public support represents revenue received through solicitation campaigns. This includes funding United Way and other federated fundraising organizations, but does not include donor designated contributions.
Earned Revenue HelpEarned revenue represents income generated in direct exchange for a product or service.Earned income includes income from government contracts.
The Center for Practical Bioethics celebrated its 30th anniversary at our annual dinner on April 24, 2014. From a first budget of $7,000 in 1984, the Center’s annual operating budget today is $1.7 million. Revenues come from membership, earned income, the annual dinner, program grants and from our annual major gifts campaign called Vision to Action. In addition, we have three established endowed chairs at the Center. The John B. Francis Chair in Bioethics, our first major endowed gift at $3 million, was funded by the Francis Family Foundation in honor of John Francis, a former board member of the Center in 1995. Since then, we have endowed the Rosemary Flanigan Chair at $2.2 million and the Kathleen M. Foley Chair at $1.5 million. The Francis funds are held on our behalf at the Greater Kansas City Community Foundation; the others are held in funds managed by the Center’s board.
The Center has expanded its efforts to increase earned income though consulting contracts and fee-based agreements with our members, health systems and investor-owned companies in the region. Goals in this area were established as part of the Center’s strategic plan in 2013. We will continue to seek program grants from foundations in Kansas City and across the country, but there are virtually no foundations that indicate bioethics as their focus. The Center thrives because thoughtful foundation decision-makers recognize that the Center does unique and essential work that affects each and every one of us. We are grateful that so many have stepped up to support this worthy work.
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