Center for Practical Bioethics

Guidance at the Crossroads of Decision

Kansas City, MO   |  www.PracticalBioethics.org

Mission

CPB's mission is to raise and respond to ethical issues in health and healthcare. Our vision is that ethical discourse and action advance the health and dignity of all persons. As science and technology expand what medicine CAN do, decisions about what OUGHT to be done grow increasingly difficult and complex. On the PERSONAL level, CPB provides guidance to patients, families and clinicians. On the PROFESSIONAL/EDUCATIONAL level, it teaches bioethics to medical students, clinicians and consumers. On the POLICY level, it brings diverse groups together to work collaboratively, recommend guidelines, develop programs and disseminate resources. “Practical” distinguishes CPB from other bioethics centers, mostly based in academic institutions and focused primarily on theoretical issues.

Ruling year info

1984

President and CEO

Mr. John G. Carney

Main address

Harzfeld Building, Suite 500 1111 Main

Kansas City, MO 64105 USA

Show more contact info

Formerly known as

Midwest Bioethics Center

EIN

48-0985815

NTEE code info

Research Institutes and/or Public Policy Analysis (E05)

(Won)

(Hon)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Nearly everyone has heard about the issues we tackle, from end-of-life, chronic pain and health disparities to our inadequately resourced and neglected public health and disaster response systems. Still, most believe these issues don't concern them. The Center is needed because: 1. These issues affect everyone and most people aren't prepared. 2. Accelerating technology and innovation pose serious ethical issues. 3. Bioethics provides the greatest assurance of integrity and justice in healthcare. We know of no other organizations that address the ethical challenges of medicine as we do from all perspectives. PERSONAL—We provide guidance to patients, families and clinicians. PROFESSIONAL/EDUCATIONAL—We teach bioethics to medical students, clinicians and consumers and disseminate thousands of free resources. POLICY—We help legislators and policymakers understand the implications of healthcare legislation and regulations with fewer unintended consequences.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Advance Care Planning

Advance care planning is the process of making and documenting decisions about the healthcare one would want if unable to speak for themselves. The Center’s advance care planning activities build on its legacy work in end-of-life care, with emphasis on diverse communities’ participation in advance care planning and on accelerated medical decision making under circumstances of high stress and physical distancing.

The need to accelerate advance care planning during the pandemic, especially among at-risk populations, became urgent. A study of 9,000 participants published in the July 2020 Journal of Palliative Medicine found that, while 80% to 90% reported awareness of advance care planning and considered it important, less than 40% had named a proxy or completed a written document. Even lower participation rates among minority communities are generally attributed to distrust of the healthcare system, cultural barriers and racism. The Center completed a major project in 2020 engaging African American faith community leaders to promote advance care planning to their congregations.

Population(s) Served
People with diseases and illnesses
Economically disadvantaged people

Virtually all clinicians face ethical issues in caring for patients and families. The 56 and growing case studies on our website convey the nature and scope of these issues. Yet most clinicians receive no more than basic orientation to clinical ethics in their training. This educational gap impedes their ability to provide the best care in normal times – and critically in pandemic times. COVID-19 revealed a huge unmet need for ethics education, as well as an immediate need for resources to equip area clinicians, administrators and policymakers to incorporate ethics into their response to the crisis.

PROFESSIONAL EDUCATION - At the University of Kansas Health System (UKHS), this is our 13th year collaborating in the ethics education of hundreds of medical students, residents, fellows, nurses, staff physicians and other health professionals. At Kansas City University we continue our contractual relationship in the education of 860 med students across both campuses. We lead the KC Regional Ethics Committee Consortium’s 35th year providing ethics education to help members resolve difficult cases and incorporate ethics into institutional policies. Staff serves as faculty for other organizations’ programming. ETHICS CONSULTATION -- We direct the Ethics Consultation Service at UKHS. We provide Clinical Ethics Services to 25+ hospitals. We respond to 100+ direct requests annually for help from caregivers and students. BIOETHICS RESOURCES – Resources at PracticalBioethics.org include 4,000+ reports, guidelines, policy briefs, program resources, and audio/video recordings of interviews, lectures and symposia from the late 1980s to present. COMMUNITY ENGAGEMENT – Events include Annual Dinner, Flanigan Lecture, Berkley Symposium and Christopher Forum.

Population(s) Served
Adults
Economically disadvantaged people

New bioethical issues are emerging and affecting healthcare delivery at an accelerating pace. COVID-19, more than anything, demonstrates the veracity and far-reaching implications of this statement. We are not aware of any other organization in the country that addresses bioethical issues from a clinical perspective. That is, from the real-world, in the moment, at the bedside perspective where life and death decisions tear families apart, leave doctors and nurses burnt out, and place institutions at risk. Emerging issues are a major concern to all healthcare leaders.

Focus areas for 2021/22 are: (1) Continue to build the Center’s work and reputation in health ethics and civic engagement through research, formation of strategic alliances and partnerships with local, regional and national entities, laying the foundation for a community-based “health and opportunity for all in the heartland” project in Greater Kansas City, led by Erika Blacksher, PhD. (2) Elevate local focus on health ethics by providing resources and spokespeople to media. (3) Promote inclusion of ethics perspective in metro-area efforts to address COVID-19, including positions on committees, task forces and workgroups. (4) Provide consultation and resources on ethical issues in healthcare requested by local, state and national policymakers. (5) Develop recommendations and best practices for improving adherence to an ethics framework in the development, dissemination and use of artificial intelligence systems in healthcare. (6) Hold bi-monthly PAINS-KC meetings involving individuals who live with pain, providers and researchers to improve patient-centered outcomes.



Population(s) Served
Economically disadvantaged people
Adults

Where we work

Awards

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of individuals attending community events or trainings

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Total includes in-person, webinar and live streamed participants.

Number of research or policy analysis products developed, e.g., reports, briefs

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Includes 50+ lectures/presentations and 7 professional journal publications, as well as blogs, newsletter articles and policy briefs.

Number of downloads of the organization's materials and explanations

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The Center offers one of the largest free online bioethics libraries in the world.

Number of referrals to resources offered

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Responding to calls from consumers in healthcare crises and policymakers seeking guidance on healthcare legislation, regulation, etc. Most consultations take 15 minutes, often longer.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The Center raises and responds to ethical issues in health and healthcare to advance the health and dignity of all persons. We focus in 3 areas:

ADANCE CARE PLANNING (ACP) – Building on our legacy work in end-of-life care, we seek to increase participation in ACP from only 30% by Americans and 16% by minority communities. For patients with advanced illness, we develop Transportable Physician Orders for Patient Preferences (TPOPP) coalitions and train providers across MO/KS in documenting patients' goals of care as physician orders. COVID-19 placed increased emphasis on the need for ACP in diverse communities and for accelerated medical decision-making in long-term care settings under high stress and physical distancing. OUTCOMES: Patients and families’ end-of-life preferences are respected and families are more satisfied with health outcomes. Even when death results, survivors experience less anxiety, depression and stress. Fewer clinicians experience moral distress. Use of palliative care and hospice services increases. Costs of non-beneficial and often painful care are reduced.

ETHICS EDUCATION & CONSULTATION – At the University of Kansas Health System, we co-chair the Ethics Committee and lead the ethics consultation service. At KC University of Medicine and Biosciences, we help educate 860 medical students. We lead the KC Regional Hospital Ethics Committee Consortium and respond to requests for guidance from policymakers, as well as consumers experiencing healthcare crises. OUTCOMES: Clinicians and allied health professionals understand bioethics in action with ability to address ethical issues. Fewer clinicians are at high risk for experiencing moral distress, reducing turnover and costs. Partnerships with other organizations advance shared objectives. Policymakers make more informed decisions with fewer unintended consequences. More holistic care positions patients and families as better able to respond to crises, with reduced mental stress and adverse outcomes. Consumer knowledge increases ability to cope and respond to ethical issues.

EMERGING ISSUES & SYSTEMS CHANGE – We respond to contemporary healthcare issues that raise ethical concerns and need for systems change. OUTCOMES: The Francis Chair develops evidence-based strategies to engage populations burdened by health disparities and reduce inequalities. Public ability to apply bioethics concepts and resources to personal struggles results in better health outcomes. Participation in metro-wide efforts to address COVID positions the metro to respond to future disasters. Policymakers are better equipped to make informed decisions. The Ethical.AI project leads to positive AI healthcare applications and prevents unintended consequences. Increased access to comprehensive pain care improves lives, saves dollars and reduces opioid prescribing.

When the Center was founded in 1984, court reporters and judges appeared in hospital rooms to intervene on end-of-life decisions. Hospice was virtually non-existent. Our “practical bioethics" strategies are based on recognition that healthcare decisions touch everyone and that ethical discourse and action can advance the health and dignity of all persons. Practical bioethics helps families in crisis, assists physicians facing tough choices, and promotes civil discourse frayed by ideological differences.

ADVANCE CARE PLANNING (ACP)
1. Conduct at least 4 Caring Conversations webinars (50-75 participants per session). 2. Fulfill requests by Kansas City community-based organizations for ACP workshops. 3. Disseminate best practices and training to help those responsible for facilitating ACP interactions to do so effectively. 4. Provide TPOPP training to enable MO/KS providers to document seriously ill patients’ goals of care as physician orders that follow patients. Disseminate comprehensive learning modules for nursing medical and business administrators implementing TPOPP.

ETHICS EDUCATION & CONSULTATION
1. Respond to clinician, provider and policymaker needs for resources on bioethics issues by producing webinars, updates, lectures, blogs, interviews, articles, guidelines and reports. 2. Develop and implement a comprehensive, integrated plan to disseminate educational resources on social platforms. 3. Respond to 100+ direct consumer/clinician requests for ethics consultations. 4. Present 10 webinars and one half-day workshop for the KC Regional Ethics Committee Consortium. Publish 12 Ethics Dispatch newsletters. 5. Present educational programs for professional and lay audiences. 6. Fulfill other area organizations’ requests to serve as educational program faculty. 7. Collaborate with other organizations representing services necessary to care for the whole person, including social work, nursing, chaplaincy and advocacy.

EMERGING ISSUES & SYSTEMS CHANGE 1. Continue to build the Center’s work and reputation in health ethics and civic engagement through research, formation of strategic alliances and partnerships with local, regional and national entities, laying the foundation for a community-based “health and opportunity for all in the heartland” project in Greater Kansas City, led by Erika Blacksher, PhD. 2. Elevate local focus on health ethics by providing resources and spokespeople to media. 3. Promote inclusion of ethics perspective in metro-area efforts to address COVID-19. 4. Provide consultation and resources on ethical issues in healthcare requested by local, state and national policymakers. 5. Develop recommendations and best practices for improving adherence to an ethics framework in the development, dissemination and use of artificial intelligence systems in healthcare. 6. Hold bi-monthly PAINS-KC meetings involving individuals who live with pain, providers and researchers to improve patient-centered outcomes.

LEADERSHIP TEAM - CEO John Carney devoted his early career to hospice and palliative care in executive positions for provider/state associations. He was VP of the Center from 2004-2010. Cindy Leyland, MBA, Vice President of Operations & Fund Development, joined the Center in 2005 and oversees all programs, resource development and administration.

PROGRAM EXPERTISE – Formerly held by the late Richard Payne, MD, before his untimely death in January 2019, the John B. Francis Chair in Bioethics was filled on September 1, 2020 by Erika Blacksher, PhD. Tarris Rosell, PhD, DMin, Rosemary Flanigan Chair, completed a fellowship in clinical ethics at Vanderbilt University. Ryan Pferdehirt, MS, HEC-C, directs membership and ethics education. Polo Comacho, PhD, promotes the Center's health ethics education services and manages TPOPP.

PARTNERSHIPS - Achieving our mission is possible ONLY by through partnerships, for example:
• Promoting ACP in African American faith communities and hospices in 6 cities involved partnerships with churches and nonprofits.
• Leading the KC Regional Hospital Ethics Committee Consortium involving 28+ area hospitals.
• Teaching ethics to medical students and clinicians including contractual arrangements with universities and medical schools.
• Examining diverse views on end-of-life care among Catholics involved coordinating 18 video conferences and bringing all stakeholders together to draft and approve the report.
• Expanding adoption and training providers in MO/KS to implement a process that translates goals of care for patients with advanced illness into physician orders (TPOPP) involves building community-based coalitions.
• Improving care for people who live with chronic pain involved working with the NIH and DHHS to develop the National Pain Strategy Report and convening 120+ leaders to plan its implementation.

The Center maintains relationships with academic and healthcare institutions, patient advocacy groups, and community, state and national organizations. Examples include BioNexusKC, Frontiers: The Heartland Institute for Clinical & Translational Research, 3 schools of medicine, Children's Mercy Hospitals & Clinics, Saint Luke's Health System, HCA Midwest, National Academy of Medicine, ABA Commission on Law and Aging, National POLST Paradigm, and several conferences of black churches. 

SUSTAINABILITY – From the many perplexing issues in healthcare, we strategically choose where best to focus our limited resources. We derive revenue from diverse sources: program grants, earned income, donations/membership, special events, endowment and honoraria.

The Center introduced the world to “practical bioethics.” In the 1990s, we published the first voluntary community HIV standards in the US and counseled both sides of the Nancy Cruzan right-to-die case. In the 1990s, we pioneered advance care planning. A short list of recent accomplishments supports the efficacy of our approach:
1. Launched MetroCARE specialty referral service for low-income uninsured.
2. Helped establish National Healthcare Decisions Day.
3. Implemented KC4 Aging in Community, adopted as a major initiative of the Mid-America Regional Council.
4. Achieved National POLST endorsement in 2016 for Kansas/Missouri TPOPP leadership.
5. Participated in development of Institute of Medicine model of care for advanced illness.
6. In response to National Academy of Sciences recommendations, formed Pain Action Alliance to Implement a National Strategy, and developed PAINS-KC citizen leader public health model.
7. Conducted ACP initiative in African American faith communities in 6 cities.
8. Launched the Ethical AI project in response to concerns about bias in algorithms that determine access and treatment in healthcare.

By early March 2020, we knew that our mission meant providing ethical guidance through the pandemic while maintaining other programs and services. In response, we focused immediate attention on:
• Developing, curating and disseminating practical pandemic resources that policymakers need to apply ethical principles to patient care in real time;
• Working with healthcare leaders to promote ethical principles embedded in plans to adequately test, trace and support individuals of all racial, ethnic and socio-economic backgrounds impacted by COVID-19.
• Responding to urgent requests from providers and families for consultations on ethically complex cases.
• Addressing the devastating impact of COVID-19 on residents of long-term care entities by helping patients and families deal with medical decision making in crisis situations.

Our clinical ethics experience and web of institutional relationships have been critical assets in this work.

What haven’t we accomplished? Bioethics is a complex field, often misunderstood. Unfortunately, only a few US foundations identify a specific interest in funding “bioethics,” and they are focused on research, not practical applications. Our response has been to increase earned income through consulting contracts and fee-based agreements, expand sponsorship, extensive grant research, individual donor cultivation, and strategic communications with diverse stakeholders. We have 2 endowed chairs, which help provide steady income.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Paper surveys, Focus groups or interviews (by phone or in person),

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve,

  • What significant change resulted from feedback?

    We recently completed a two year process using a volunteer focus group of stakeholders to improve services/programming to ethics committee institutional members throughout our 30+hospital consortium. As a result we created a new educational format and delivery model for content (webinars, workshops and online resources).

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • Which of the following feedback practices does your organization routinely carry out?

  • What challenges does the organization face when collecting feedback?

    It is difficult to find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time, It is difficult to identify actionable feedback,

Financials

Center for Practical Bioethics
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Center for Practical Bioethics

Board of directors
as of 6/29/2021
SOURCE: Self-reported by organization
Board chair

Eva Karp

Cerner

Term: 2021 - 2021

Mary Blake

Retired Attorney (Polsinelli)

Sandra Stites

Kansas City Women's Clinic

Sukumar Ethirajan

Dr. E.T.'s Concierge Care

Jane Lombard

Palo Alto Medical Foundation

Peter Wilkinson

Rx Savings Solutions

Abiodun Akinwuntan

KU School of Health Professions

Darrin D'Agostino

Kansas City University of Medicine and Biosciences

Alan Edelman

Retired

Eva Karp

Cerner Corporation

Stephen Salanski

Partners in Primary Care Clinics & Transcend Population Health Mgt.

Liza Townsend

Community Volunteer

Brian Carter

UMKC & Children's Mercy Hospital

Karen Cox

Tresia Franklin

Diane Gallagher

American Century Investments

Sam Meers

Barkley Kansas City

Mark Thompson

Seigfreid Bingham

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 06/28/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 06/28/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.