Center for Practical Bioethics
Harzfeld Building, Suite 500
1111 Main
Kansas City MO 64105-2116
Web and Phone Contact
Telephone (816) 221-1100
Mission Statement
Mission:  To raise and respond to ethical issues in health and healthcare.
Vision:  Ethical discourse and action advance the health and dignity of all persons. 

 

The Center for Practical Bioethics is a nonprofit, free-standing and independent organization nationally recognized for its work in practical bioethics. For more than 30 years, the Center has helped patients and their families, healthcare professionals, policymakers and corporate leaders grapple with difficult issues in healthcare and research involving patients. The Center does not wait to be called upon. Our vision and mission require us to be proactive — to call attention to ethical issues and to develop programs, policies and publications that address them. Through this unique approach, the Center puts “practical bioethics” into action. That’s why our motto is “Real Life. Real Issues. Real Time.”

 

The results? Reasoned, real-world responses to ethically complex situations and, ultimately, the greatest peace of mind possible for those who must decide. A dedicated Board of Directors and staff representing multiple disciplines and fields of expertise, as well as individuals and organizations throughout the nation committed to advancing ethical practices and policies in health and healthcare, support the Center.

 

The Center’s unique practical approach makes a difference by:
  1. Using the tools of ethics based on principles of philosophy and ethics developed over centuries.
  2. Seizing opportunities to advance awareness of issues and causes.
  3. Bringing diverse, multi-disciplinary groups together to work collaboratively.
  4. Finding common ground through public and professional education, consumer and clinical consultation, research, publications, public engagement and advocacy.


Leadership
CEO/Executive Director John G. Carney
Board Chair Mary Beth Blake
Board Chair Company Affiliation Polsinelli
History and Background
Year of Incorporation 1984
Former Names
Midwest Bioethics Center
Financial Summary
 
 
Projected Revenue $1,753,689
Projected Expenses $1,745,426
Statements
Mission Statement
Mission:  To raise and respond to ethical issues in health and healthcare.
Vision:  Ethical discourse and action advance the health and dignity of all persons. 

 

The Center for Practical Bioethics is a nonprofit, free-standing and independent organization nationally recognized for its work in practical bioethics. For more than 30 years, the Center has helped patients and their families, healthcare professionals, policymakers and corporate leaders grapple with difficult issues in healthcare and research involving patients. The Center does not wait to be called upon. Our vision and mission require us to be proactive — to call attention to ethical issues and to develop programs, policies and publications that address them. Through this unique approach, the Center puts “practical bioethics” into action. That’s why our motto is “Real Life. Real Issues. Real Time.”

 

The results? Reasoned, real-world responses to ethically complex situations and, ultimately, the greatest peace of mind possible for those who must decide. A dedicated Board of Directors and staff representing multiple disciplines and fields of expertise, as well as individuals and organizations throughout the nation committed to advancing ethical practices and policies in health and healthcare, support the Center.

 

The Center’s unique practical approach makes a difference by:
  1. Using the tools of ethics based on principles of philosophy and ethics developed over centuries.
  2. Seizing opportunities to advance awareness of issues and causes.
  3. Bringing diverse, multi-disciplinary groups together to work collaboratively.
  4. Finding common ground through public and professional education, consumer and clinical consultation, research, publications, public engagement and advocacy.


Background Statement

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:

 
  • The horrors of the Tuskegee Syphilis Study, which began in 1932 and were exposed in 1972, prompted the creation of the National Commission for the Protection of Human Subjects in 1974.
  • In 1976, the New Jersey Supreme Court ruled in favor of removal of a ventilator at the request of the parents of Karen Ann Quinlan who had lapsed into a persistent vegetative state.
  • The President’s Commission for the Protection of Human Subjects of Biomedical and Behavioral Research published the Belmont Report in 1978, which led to the requirement that any research institution funded by federal dollars have an Institutional Review Board to ensure that “beneficence, respect and justice” govern research involving human subjects.
  • In 1978, the first “test-tube” baby was born through in vitro fertilization.
  • In the early 1980s, a number of Baby Doe cases established precedents for the obligations of healthcare professionals in the care and treatment of seriously disabled newborns.

 

Hans, Mary Beth and Karen knew that bioethics should be brought to the bedside and believed also that bioethics could provide valuable tools and resources to help those making the most ethically complex life and death decisions.
 

In founding the Center, they adopted three bedrock principles:

  
  • Bring diverse, multidisciplinary groups together to work collaboratively.
  • Focus on the practical and theoretical, with emphasis on the practical.
  • Remain independent, free-standing and unfettered by special interests.

 

For 30 years, the Center has led the way in making bioethics meaningful to patients and families from all walks of life, as well as their clinicians and institutions. The Center brings diverse groups together to address difficult issues and achieve common ground, ensuring always that the patient voice is heard.
Impact Statement

ACCOMPLISHMENTS:

 
  1. Developed community programs and comprehensive training for clinicians to engage in advance care planning conversations in response to Medicare funding for these services.
  2. Expanded community coalitions in KS and MO offering help to patients living with life-limiting illness to ensure their wishes are honored regardless of care setting.
  3. In local and national work to improve care for those who live with chronic pain, we formed the 1st Citizen Leader Group in the nation, worked with multiple federal agencies in finalizing the National Pain Strategy Report and convened national leaders to implement it.
  4. Convened the 29th year of the KC Regional Hospital Ethics Committee Consortium and provided ethics consultation at hospitals and health systems across the region. 
  5. Provided guidance to hundreds faced with complex medical decisions. 
 
GOALS:
 

  1. Building on its legacy work in end-of-life care, the Center is exploring new paths to honor patient wishes. In 2016, we are focused on increasing participation in advance care planning by the American public in general, in the workplace and in African Americans faith communities. We are also engaged in regional efforts to train and educate the medical community to hold these discussions with patients, and we are expanding our reach with community coalitions throughout KS and MO to achieve goals of care for those living with advanced illness.
  2. Kansas City’s three medical schools currently provide ethics training as part of their curricula but with no sharing of resources. Initial efforts are underway to design a bioethics education consortium for medical students, and to eventually broaden the effort to include other health professions.
  3. The Center is leading a two-year effort to develop and implement No Longer Silent, a strategic communications plan to reframe the current dialog regarding chronic pain management and care, substance abuse and the relationship of opioids to both patient audiences.

Needs Statement

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 Conversations. 

  • Remote locations with fewer employees, staff time to keep the presentations updated, materials to disseminate to several thousand participating employees ($25,000)
  • Working with hospitals to provide our workbooks to patients and families ($10,000)
  • Training, education, and support for coalitions organizing around Transportable Physicians Orders for Patient Preferences (TPOPP), including collateral materials, video production and print ($25,000).
  • Policy and advocacy staff support to work with Kansas and Missouri professional associations, regulatory and legislative bodies ($40,000).
  • PAINS Project Kansas City – Detailed grant proposal description provided upon request. ($150,000)

 

Ethics Education

  • Support for the emerging Kansas City Consortium for Bioethics and Humanities providing ethics education to medical students and mid-career professionals through CPB, as well as all three KC med schools
  • Certificate in Bioethics Scholarships ($45,000)

 

Increased Organizational Capacity

  • Ongoing web presence and upgrade of site, as well as making all bioethics resources developed by the Center over 32 years accessible/searchable through Google ($30,000)
  • Development and marketing staff position(s) ($70,000)
  • Technology fund ($10,000)

Service Categories
Research Institutes & Public Policy Analysis
Areas of Service
National
MO
KS
MO - Jackson County
MO - Clay County
MO - Platte County
KS - Wyandotte County
KS - Johnson County
MO - Jackson County Urban Core
CEO/Executive Director/Board Chair Statement

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 Center has published numerous policy briefs and curricula, such as an 8-year policy series, "State Initiatives to Improve End-of-Life Care; recommendations to the DHHS Secretary to establish new federal protections for subjects with diminished capacity; an end-of-life curriculum piloted for the CDC; and a report on advance care planning presented to Congress.

 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.  

The Center has also been a pioneer in the area of pain and pain management. From 2003-5, we collaborated with the Federation of State Medical Boards on guidelines for the use of controlled substances treating pain. In 2006, we consulted with CDC to develop a model for health departments to integrate palliative care with chronic disease management. In 2009, with the Academy of Family Physicians, we developed and distributed a curriculum to improve the treatment of pain and a policy brief to assist law enforcement.

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.

Programs
Description

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:

  • ADVANCE CARE PLANNING (ACP)–We respond to hundreds of questions and inquiries from consumers and clinicians experiencing difficulty with healthcare decision making. We offer our Caring Conversations® workbook free and at minimal cost for large quantities. Through Caring Conversations® in the Workplace, we provide consultation and advocacy for employees with healthcare challenges. Responding to Medicare’s introduction of payment for ACP, we offer provider training and community-based education. Also in 2016, we started a 2-year initiative with African American faith communities in 6 cities to increase advance care planning.
  • GOALS OF CARE FOR THE SERIOUSLY ILL-We are building coalitions and training providers across MO and KS in adoption of a form that translates patient goals of care into physician orders that follow the patient.
Category Health Care, General/Other Bioethics & Medical Ethics
Population Served People/Families of People with Health Conditions, At-Risk Populations, General/Unspecified
Short-Term Success

In 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 improvement.


Long-Term Success

Research clearly 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.


Program Success Monitored By

ADVANCE CARE PLANNING EDUCATION:

  • Number of Caring Conversations® workbooks requested and distributed by recipient (e.g., individuals, workplace, providers, etc.) 
  • Number of Caring Conversations® in the Workplace programs provided for employers
  • Post-workshop participant surveys indicating intent to have ACP family conversation and/or need for additional assistance

GOALS OF CARE FOR THE SERIOUSLY ILL:

  • Number of TPOPP coalitions and number of providers involved in each as calculated through the web-based Recap data management tool
  • Number of TPOPP forms ordered by coalitions as indication of expanding use by patients

Examples of Program Success

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.

 

Unfortunately, we do not have resources to contact a sample of workbook recipients to show that, of X distributed in a particular year, Y had an end-of-life event in their family and that the workbook made a positive difference in Z% of cases. However, recent studies (e.g., British Medical Journal, 2013) show that advance care planning tools can prevent unnecessary suffering, tragic consequences and wasted resources.
Description

The Center 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. The Center:

  • Leads effort to design a regional bioethics education consortium among Kansas City’s three medical schools.
  • Chairs Kansas City University (KCU) of Medicine and Biosciences’ bioethics program and leads its Bioethics Lecture Series.
  • Leads ethics committees and provides ethics consultation services in hospitals and health systems.
  • Leads the KC Hospital Regional Ethics Committee Consortium (29 yrs).
  • Presents community lectures/symposia.
  • Publishes/disseminates at no charge case studies, guidelines, briefs, blogs, educational webinars and audio/video lecture recordings.
Category Health Care, General/Other Bioethics & Medical Ethics
Population Served General/Unspecified, At-Risk Populations,
Short-Term Success

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.


Long-Term Success

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.


Program Success Monitored By

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 traffic.


Examples of Program Success

Agreement has 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.


Description

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’s decade-plus investment in changing the way pain is perceived judged and treated through the PAINS program continues to yield significant progress in improving care for the more than 100 million Americans who live with chronic pain.
  • PUBLIC-PRIVATE PARTNERSHIPS-The Center is collaborating with the Alliance for Clinical Research Excellence and Safety to envision a new paradigm for ethical and regulatory innovations using Learning Health Systems’ ethical framework.

Category Health Care, General/Other Health Care Issues
Population Served At-Risk Populations, Other Named Groups,
Short-Term Success

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.


Long-Term Success

CHRONIC PAIN-The 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.


Program Success Monitored By

CHRONIC PAIN-We 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.


Examples of Program Success

  • CHRONIC PAIN-The PAINS Project formed the national’s first Citizen Leaders Group composed of chronic pain patient. PAINS-KC has been recognized for its groundbreaking work in involving patients directly in defining research priorities that respond to patient rather than clinician agendas. We worked with NIH and HHS to develop the National Pain Strategy Report, convened 120+ leaders to plan for its implementation, and are leading an effort to find common ground among advocating for improve pain care and those working to prevent opioid abuse.
  • PUBLIC-PRIVATE PARTNERSHIPS-The Center convened a March 2016 meeting in KC of 18 key stakeholders and published a report on PPPs suggesting new best practices for partnerships that uphold the integrity of the scientific process.

CEO Comments

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.

Executive Director/CEO
Executive Director John G. Carney
Term Start Dec 2011
Experience

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. 

 

Two decades of hospice, palliative care and healthcare management experience prepared John for his first leadership role at the Center as vice president of Aging and End of Life from 2004 through 2010. His executive leadership positions include professional and volunteer organizations at the local provider, state and national association levels. His passionate voice advocating for families facing difficult healthcare decisions has been heard in rural Kansas town halls to national forums from coast to coast.

 

Following a brief appointment in 2011 as executive director of Crossroads Hospice to launch its Kansas presence, John returned to serve as the Center’s second president. He holds an undergraduate degree in philosophy from Newman University in Wichita, Kansas, and masters in counseling from Wichita State University. Prior to his return to the Midwest in 2004, John spent time in the nation’s capital in leadership positions with the National Hospice and Palliative Care Organization and America’s Health Insurance Plans.


Co-CEO/Executive Director
Term Start
Compensation Last Year
Former CEOs
NameTerm
Myra Christopher 1985 - Dec 2011
Senior Staff
Title Executive Vice President/Chief Operating Officer
Experience/Biography
Linda Ward joined the Center in 2004 and serves as Executive Vice President and COO. Previously, she served as executive vice-president of corporate relations and strategic planning for Health Midwest and was part of the team that led Health Midwest through its sale to HCA. The conversion is considered the largest transaction of its kind resulting in the formation of the Greater Kansas City Healthcare Foundation (MO) and the REACH Foundation (KS).
During her tenure, the Center has made progress in professionalization of staff functions, development towards a high performing board, creation of endowment, and growth of earned income and special events revenue in support of the mission. 
Linda is past chair of the Board of Westminster College where she was awarded an honorary doctorate of humane letters. She is immediate past chair of the Port Authority of Kansas City and of the Northland Community Foundation and previously chaired the Missouri Children's Trust Fund, the Boys and Girls Clubs of Greater Kansas City, the Greater Kansas City Women's Foundation. She was vice chair of the Partnership for Children, and serves as chair of the governance committee of the United Way of Greater Kansas City and as a director of Lawson Bank. Among other honors she has received the Gillis "Spirit of Kansas City" Award, the Kansas City Tomorrow's Distinguished Alumni Award, and Woman of the Year by the Central Exchange.
Staff
Paid Full-Time Staff 7
Paid Part-Time Staff 3
Volunteers 106
Paid Contractors 2
Retention Rate 100%
Formal Evaluations
CEO Formal Evaluation Yes
CEO/Executive Formal Evaluation Frequency Annually
Senior Management Formal Evaluation Yes
Senior Management Formal Evaluation Frequency Annually
Non-Management Formal Evaluation Yes
Non-Management Formal Evaluation Frequency Annually
Plans & Policies
Organization Has a Fundraising Plan Yes
Organization Has a Strategic Plan Yes
Management Succession Plan Yes
Organization Policy and Procedures Yes
Nondiscrimination Policy No
Whistleblower Policy Yes
Document Destruction Policy Yes
Collaborations

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.


Awards
Award/RecognitionOrganizationYear
President's AwardNational Association of Attorneys General2003
Marion Gray-Secundy Sankofa AwardLast Miles of the Way Home Conference - Robert Wood Johnson Foundation2004
Non-Profit Executive of the Year AwardNonprofit Connect2006
William F. Yates Medallion for Distinguished ServiceWilliam Jewell College2008
Head and Heart AwardAmerican Association ofPain Management2009
Consumer Advocacy AwardAmerican Academy of Pain Medicine2010
President's AwardAmerican Academy of Palliative Medicine2012
Interagency Pain Research Coordinating CommitteeNational Institutes of Health2014
Pioneer AwardHealth Care Chaplaincy Network2014
Starr Women's Hall of FameUniversity of Missouri-Kansas City2015
Government Licenses
Is your organization licensed by the government? No
CEO Comments

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’s 30-year history of listening to patients and families and translating what we’ve learned from those intimate and often critical expressions into action is the core of the Center’s work. Its programs, projects, policy documents, guidelines and preferred practices have proven valuable to the providers who have participated with us and have contributed to the important work of resolving differences and deficiencies.

 

The Center’s success can be attributed to the professionalism of its members and collaborators and the commitment of a tireless group of patients, families and advocates. The staff and volunteers at the Center commit daily to the task of improving patient outcomes, finding common ground among those who struggle with genuine differences while respectfully disagreeing. Our work is to clarify the facts, identify the “oughts,” attend to the safe and respectful conduct of science and research while never losing sight of what “good health” and “good healthcare” mean. The Center’s reliance on the generosity of its community of donors and benefactors keep us true to the pledge that we will pursue our goals with integrity and passion and that we will remain grateful to many and beholden to none.



Board Chair
Board Chair Mary Beth Blake
Company Affiliation Polsinelli
Term Jan 2016 to Dec 2016
Email mblake@polsinelli.com
Board Members
NameAffiliation
Robert J Belt MDRetired
Drew Billingsley American Century Investments
Mary Beth Blake JDPolsinelli, Shelton, & Welte
Sukumar Ethirajan MDHCA Midwest
Richard Green Corridor InfraTrust Management, LLC
Mark Hoffman PhDUniversity of Missouri - Kansas City
Jane Lombard MDPalo Alto Medical Foundation
Karen L. Miller PhD, RNUniversity of Kansas Medical Center
Cynthia B. Spaeth Community Volunteer
James Spigarelli Retired
Ed Stevens Pulse NeedleFree Systems, Inc.
Sandra R. Stites MDKansas City Women's Clinic
Peter M. Wilkinson ExamOne, a Quest Diagnostics Company
John D. Yeast MDSaint Luke's Hospital
Board Demographics - Ethnicity
African American/Black 1
Asian American/Pacific Islander 1
Caucasian 12
Hispanic/Latino 0
Native American/American Indian 0
Other 0 0
Board Demographics - Gender
Male 9
Female 5
Unspecified 0
Governance
Board Term Lengths 3
Board Term Limits 3
Board Meeting Attendance % 73%
Written Board Selection Criteria? Yes
Written Conflict of Interest Policy? Yes
Percentage Making Monetary Contributions 100%
Percentage Making In-Kind Contributions 100%
Constituency Includes Client Representation No
Number of Full Board Meetings Annually 6
Standing Committees
Board Governance
Executive
Finance
Development / Fund Development / Fund Raising / Grant Writing / Major Gifts
CEO Comments

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.

 

We often convene groups of diverse stakeholders to clarify ethical issues, identify common ground, and to develop programs, institutional policies, and public health strategies that can be defended ethically and implemented in the "real world." One example is the Center’s work to create balanced pain policy in the US. Two important ‘goods’ – adequate treatment of chronic pain and keeping prescription drugs off the streets – are in conflict. Patients suffering from chronic pain need strong pain medication. Studies say that need is not always met because doctors fear they will be targeted by law enforcement if they prescribe controlled substances. The Center has brought together the Federation of State Medical Boards, the National Association of Attorneys General, the DEA and others to talk about this problem and find common ground. The Center’s research clearly identified the size of the problem. Findings were published in the Journal of Pain Medicine, and the study has drawn attention from around the country. The Center plays a key role as convener to these groups.

 

Another example includes the Center’s leadership role in managing a bi-state initiative to ensure that the expressed wishes of patients living with advanced disease are honored across settings and among different healthcare providers. The Center’s role in coordinating the Transportable Physician Orders for Patient Preferences in multiple communities in the states of Kansas and Missouri demonstrates the trust and confidence many large and small healthcare providers have in the Center’s efforts at advancing improved patient outcomes, especially for the most vulnerable patient populations.
 
 
Financials
Fiscal Year Start Jan 01, 2015
Fiscal Year End Dec 31, 2015
Projected Revenue $1,753,689
Projected Expenses $1,745,426
Endowment Value $3,306,989
Spending Policy Percentage
Percentage 5%
IRS Letter of Exemption
Foundation Comments
  • FY 2015, 2014: Financial data reported using the IRS Form 990.
  • FY 2013: Financial data reported using the organization's audited financial statements.  
  • Foundation/corporate revenue line item may include contributions from individuals. 
Detailed Financials
Revenue SourcesHelpThe financial analysis involves a comparison of the IRS Form 990 and the audit report (when available) and revenue sources may not sum to total based on reconciliation differences. Revenue from foundations and corporations may include individual contributions when not itemized separately.
Fiscal Year201520142013
Foundation and
Corporation Contributions
$477,416$833,264$1,045,158
Government Contributions$0$0$0
Federal----$0
State----$0
Local----$0
Unspecified$0$0$0
Individual Contributions----$0
$0$0$0
$220,178$266,686$21,797
Investment Income, Net of Losses$95,250$103,500$114,603
Membership Dues$95,150$104,450$121,010
Special Events$227,647$206,516$287,328
Revenue In-Kind$0$18,330$0
Other$9,390$16,293$6,290
Expense Allocation
Fiscal Year201520142013
Program Expense$1,252,744$1,221,579$1,214,647
Administration Expense$219,224$384,163$331,237
Fundraising Expense$290,458$154,220$129,514
Payments to Affiliates----$0
Total Revenue/Total Expenses0.640.880.95
Program Expense/Total Expenses71%69%72%
Fundraising Expense/Contributed Revenue41%15%10%
Assets and Liabilities
Fiscal Year201520142013
Total Assets$3,909,799$4,590,730$4,464,792
Current Assets$549,459$761,702$339,434
Long-Term Liabilities$208,351$183,597$152,427
Current Liabilities$240,579$232,942$136,360
Total Net Assets$3,460,869$4,174,191$4,176,005
Short-Term Solvency
Fiscal Year201520142013
Current Ratio: Current Assets/Current Liabilities2.283.272.49
Long-Term Solvency
Fiscal Year201520142013
Long-Term Liabilities/Total Assets5%4%3%
Top Funding Sources
Fiscal Year201520142013
Top Funding Source & Dollar AmountFrancis Family Foundation $142,420Anonymous $139,175Anonymous $131,433
Second Highest Funding Source & Dollar AmountMilbank Foundation for Rehabilitation $100,000Anonymous $105,000Anonymous $100,000
Third Highest Funding Source & Dollar AmountJohn & Wauna Harman Foundation $62,337Anonymous $100,000Anonymous $75,000
Capital Campaign
Currently in a Capital Campaign? No
Capital Campaign Anticipated in Next 5 Years Yes
Organization Comments

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.

Organization Name Center for Practical Bioethics
Address Harzfeld Building, Suite 500
1111 Main
Kansas City, MO 641052116
Primary Phone (816) 221-1100
CEO/Executive Director John G. Carney
Board Chair Mary Beth Blake
Board Chair Company Affiliation Polsinelli
Year of Incorporation 1984
Former Names
Midwest Bioethics Center