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Author Archive: Practical Bioethics

About Practical Bioethics

Deciding How You Want to Live in the Time of COVID19


People don’t like to talk about politics, religion or money. To that we would add advance care planning. And to that we would add there’s been no time in recent memory when it was more important to name someone to speak for you if you can’t speak for yourself…which is what happens when you’re on a ventilator!


Advance care planning is the process of clarifying your life goals and values and making sure your healthcare preferences are known and honored.


Most Americans today will die from complications of chronic illness, with slow and uncertain disease paths, affected by dementia, and 85% will die without capacity to make decisions.


So why are two-thirds of Americans still leaving it up to their doctors and ill-prepared family members to make decisions about care and life-prolonging treatments? Maybe you’re familiar with some of these mistaken beliefs that lead people to avoid advance care planning:

·      I’ll always be able to make my own decisions.

·      My family already knows my wishes.

·      My doctor will know what’s right.

·      I’ve written it down so I don’t need to talk about it.


Solutions Offered


The Center pioneered advance care planning in the 1980s and continues trailblazing work to make the patient voice heard.


·      Counseling – Responding to calls for guidance in a personal or family healthcare crisis. Call us at 816-221-1100 if you need help.

·      Resources – Providing Caring ConversationsÒ workbooks in English and Spanish.

·      Employee Benefits – Offering advance care planning education and support through corporate employee benefit programs.

·      Cultural Competence – Developing curricula and holding workshops to encourage advance care planning in African American faith communities.

·      Seriously Ill Patients – Training Missouri and Kansas providers to document seriously ill patients’ goals of care as physician orders.

·      MyDirectives.com – Enabling family and providers to easily access advance care planning documents and video testimonies online.


Three Lessons Learned


1.     Advance care planning is for everyone. A medical crisis could leave you too ill to make your own healthcare decisions at any age.

2.     Start with the conversation. Share your wishes with someone you trust to speak for you if you can’t speak for yourself.

3.     This is not a one-and-done process. Wishes change through various life stages. Revisit your plan.


Things happen. People have accidents. Get chronic illnesses. Receive life-threatening diagnoses. And, now, pandemics.


Advance care planning is not about death and dying. It’s about how you want to live.



April 16, 2020

National Healthcare Decisions Day


Founded in 2008, National Healthcare Decisions Day is a collaborative effort of national, state and community organizations to inspire, educate and empower the public and providers about the importance of advance care planning.

Full Article

Deciding How You Want to Live in the Time of COVID19


People don’t like to talk about politics, religion or money. To that we would add advance care planning. And to that we would add there’s been no time in recent memory when it was more important to name someone to speak for you if you can’t speak for yourself…which is what happens when you’re on a ventilator!


Advance care planning is the process of clarifying your life goals and values and making sure your healthcare preferences are known and honored.


Most Americans today will die from complications of chronic illness, with slow and uncertain disease paths, affected by dementia, and 85% will die without capacity to make decisions.


So why are two-thirds of Americans still leaving it up to their doctors and ill-prepared family members to make decisions about care and life-prolonging treatments? Maybe you’re familiar with some of these mistaken beliefs that lead people to avoid advance care planning:

·      I’ll always be able to make my own decisions.

·      My family already knows my wishes.

·      My doctor will know what’s right.

·      I’ve written it down so I don’t need to talk about it.


Solutions Offered


The Center pioneered advance care planning in the 1980s and continues trailblazing work to make the patient voice heard.


·      Counseling – Responding to calls for guidance in a personal or family healthcare crisis. Call us at 816-221-1100 if you need help.

·      Resources – Providing Caring ConversationsÒ workbooks in English and Spanish.

·      Employee Benefits – Offering advance care planning education and support through corporate employee benefit programs.

·      Cultural Competence – Developing curricula and holding workshops to encourage advance care planning in African American faith communities.

·      Seriously Ill Patients – Training Missouri and Kansas providers to document seriously ill patients’ goals of care as physician orders.

·      MyDirectives.com – Enabling family and providers to easily access advance care planning documents and video testimonies online.


Three Lessons Learned


1.     Advance care planning is for everyone. A medical crisis could leave you too ill to make your own healthcare decisions at any age.

2.     Start with the conversation. Share your wishes with someone you trust to speak for you if you can’t speak for yourself.

3.     This is not a one-and-done process. Wishes change through various life stages. Revisit your plan.


Things happen. People have accidents. Get chronic illnesses. Receive life-threatening diagnoses. And, now, pandemics.


Advance care planning is not about death and dying. It’s about how you want to live.



April 16, 2020

National Healthcare Decisions Day


Founded in 2008, National Healthcare Decisions Day is a collaborative effort of national, state and community organizations to inspire, educate and empower the public and providers about the importance of advance care planning.

Full Article

Jama’s mom had been living in a long-term acute care facility on dialysis and a ventilator for nearly five months. Dad was by her side 24/7.


“One day, as my sister and I were walking out, I looked at her and said, ‘I think mom is dying,’” said Jama. “We started crying. Of course mom was dying, but no one had told us…or Mom.”


Call the Center


Jama and her siblings began insisting that the doctors at least be honest with their dad about Mom’s failing condition. Dad thought he had to seek heroic efforts because of religious beliefs. All along Mom thought she was going to get well enough to go home.  


“There wasn’t anyone to guide us through it,” said Jama, “so I called the Center.


“The staff there helped us understand who we needed to ask for what and how to talk honestly with Dad about Mom’s situation. When the doctors finally told Mom that she would live on a vent for the rest of her life, she said take it out. She died peacefully within hours. 


“The work and wisdom of the Center helped move us from anguish to grief and finally peace of mind.”


Monthly Giving


That was five years ago. Today, Jama and her husband Carl are monthly donors to the Center because they want to ensure that the resources that helped them are there for others.


“The Center helps people in so many personal ways,” said Jama. “They focus on education and policy issues that aren’t trendy or glamorous but that we, and everybody we know, will eventually face.”

 


 


Full Article

Jama’s mom had been living in a long-term acute care facility on dialysis and a ventilator for nearly five months. Dad was by her side 24/7.


“One day, as my sister and I were walking out, I looked at her and said, ‘I think mom is dying,’” said Jama. “We started crying. Of course mom was dying, but no one had told us…or Mom.”


Call the Center


Jama and her siblings began insisting that the doctors at least be honest with their dad about Mom’s failing condition. Dad thought he had to seek heroic efforts because of religious beliefs. All along Mom thought she was going to get well enough to go home.  


“There wasn’t anyone to guide us through it,” said Jama, “so I called the Center.


“The staff there helped us understand who we needed to ask for what and how to talk honestly with Dad about Mom’s situation. When the doctors finally told Mom that she would live on a vent for the rest of her life, she said take it out. She died peacefully within hours. 


“The work and wisdom of the Center helped move us from anguish to grief and finally peace of mind.”


Monthly Giving


That was five years ago. Today, Jama and her husband Carl are monthly donors to the Center because they want to ensure that the resources that helped them are there for others.


“The Center helps people in so many personal ways,” said Jama. “They focus on education and policy issues that aren’t trendy or glamorous but that we, and everybody we know, will eventually face.”

 


 


Full Article

Sandra Stites, MD

Board Chair, Center for Practical Bioethics
My first exposure to the Center for Practical Bioethics was as a guest at the Annual Dinner event with my husband, who is a physician at the University of Kansas. But it was my experience as an OB/GYN physician that really sparked my desire to get more involved. 

In my practice as an OB/GYN, and especially in OB, ethics comes into play from day one throughout pregnancy. I can remember one of my first patients decades ago, a senior at a local high school, who wasn’t allowed to graduate because she was pregnant. 

And with the growth of technology in medicine we now have sophisticated prenatal testing, which raises questions about what to do with the information, how it’s presented, how it’s perceived and who makes decisions about what happens. Then we get to birth. If delivery is premature or there’s a problem with delivery or birth defects, again, questions arise about how this is handled, perceived and who makes decisions.

Lucky Kansas City

Knowing not only that there is help locally to address those types of situations but also of the Center’s national influence underscores how lucky Kansas City is to have this resource. 

Good friends, such as a former board chair of the Center, Cynthia Spaeth, advised me a few years ago that if I ever went looking for a place to devote my spare time, I should think about volunteering for the Center. 

I joined the Center’s board in 2015, and will soon start my second year as its chair. I can honestly say I have never worked with a governing board with 100% of its members so invested, from so many walks of life and diverse points of view, all of which allows for well-rounded discussion and constructive strategic guidance. People walk up to me and other board members asking how they can be part of this. That’s because of the work of the board and a small staff that works extremely hard.  

Community-Based Bioethics

If asked to name one challenge we face as an organization, I would say funding. Bioethics isn’t a typical funding category. The field’s breadth and complexity, involving multiple disciplines, makes general operating expenses especially difficult to secure. The one or two foundations that focus on bioethics are primarily interested in research, not practical community-based bioethics.

Nevertheless, I have no doubt that, as it has for nearly 36 years, the Center will continue to thrive. I am particularly encouraged by our growing emphasis on earned income through consulting contracts and fee-based agreements, such as the Clinical Ethics Service, offering hospitals support for ethics consultations, ethics committee management, protection of human subjects involved in research, and advance care planning programs. 

It is my honor and privilege to serve, to grow with the Center, and to further its vision to advance the health and dignity of all persons.
- - - - - - 

By Sandra Stites, MD

Full Article

Sandra Stites, MD

Board Chair, Center for Practical Bioethics
My first exposure to the Center for Practical Bioethics was as a guest at the Annual Dinner event with my husband, who is a physician at the University of Kansas. But it was my experience as an OB/GYN physician that really sparked my desire to get more involved. 

In my practice as an OB/GYN, and especially in OB, ethics comes into play from day one throughout pregnancy. I can remember one of my first patients decades ago, a senior at a local high school, who wasn’t allowed to graduate because she was pregnant. 

And with the growth of technology in medicine we now have sophisticated prenatal testing, which raises questions about what to do with the information, how it’s presented, how it’s perceived and who makes decisions about what happens. Then we get to birth. If delivery is premature or there’s a problem with delivery or birth defects, again, questions arise about how this is handled, perceived and who makes decisions.

Lucky Kansas City

Knowing not only that there is help locally to address those types of situations but also of the Center’s national influence underscores how lucky Kansas City is to have this resource. 

Good friends, such as a former board chair of the Center, Cynthia Spaeth, advised me a few years ago that if I ever went looking for a place to devote my spare time, I should think about volunteering for the Center. 

I joined the Center’s board in 2015, and will soon start my second year as its chair. I can honestly say I have never worked with a governing board with 100% of its members so invested, from so many walks of life and diverse points of view, all of which allows for well-rounded discussion and constructive strategic guidance. People walk up to me and other board members asking how they can be part of this. That’s because of the work of the board and a small staff that works extremely hard.  

Community-Based Bioethics

If asked to name one challenge we face as an organization, I would say funding. Bioethics isn’t a typical funding category. The field’s breadth and complexity, involving multiple disciplines, makes general operating expenses especially difficult to secure. The one or two foundations that focus on bioethics are primarily interested in research, not practical community-based bioethics.

Nevertheless, I have no doubt that, as it has for nearly 36 years, the Center will continue to thrive. I am particularly encouraged by our growing emphasis on earned income through consulting contracts and fee-based agreements, such as the Clinical Ethics Service, offering hospitals support for ethics consultations, ethics committee management, protection of human subjects involved in research, and advance care planning programs. 

It is my honor and privilege to serve, to grow with the Center, and to further its vision to advance the health and dignity of all persons.
- - - - - - 

By Sandra Stites, MD

Full Article

The African American Advance Care Planning Palliative Care Network is the brainchild of the late Dr. Richard Payne, a man of great honor and distinguished character. I’ll always remember being introduced to him, initially by phone in 2006, when I was working on my Master’s in Social Work. My thesis was on African Americans at the end of life and I wanted to ask Dr. Payne if I could reference his work. He not only said yes but also became a mentor to me. I had the opportunity to work with him on multiple projects. 


Dr. Payne’s exemplary leadership was always balanced with his love for his family and his fellow man. I believe that God graced my life for 12 precious years to work with Dr. Payne and to become friends with him and his devoted wife, Terrie—the love of his life.


Our first Network meeting in Durham was indeed sacred. I learned that the meeting room where we gathered at Duke University’s Divinity School was the same place where Dr. Payne had first spoken on the topic of AA-ACP. We felt an air of peace and solidarity of mind for the work at hand—the right place, the right time, and for the right reason. Sacred indeed.


I believe I speak for us all in the Network when I say that we are committed to advancing equitable healthcare and service delivery to the most vulnerable persons in our society. I am honored to be a part of that mission. As we move forward in furthering the work of the AA-ACPN, we also continue the monumental legacy of Dr. Payne’s incredible lifework and vision.



GLORIA THOMAS ANDERSON, PhD, LMSW

Advance Care Planning & Health Living Through Faith

African American Advance Care Planning Palliative Care Network member

Full Article

The African American Advance Care Planning Palliative Care Network is the brainchild of the late Dr. Richard Payne, a man of great honor and distinguished character. I’ll always remember being introduced to him, initially by phone in 2006, when I was working on my Master’s in Social Work. My thesis was on African Americans at the end of life and I wanted to ask Dr. Payne if I could reference his work. He not only said yes but also became a mentor to me. I had the opportunity to work with him on multiple projects. 


Dr. Payne’s exemplary leadership was always balanced with his love for his family and his fellow man. I believe that God graced my life for 12 precious years to work with Dr. Payne and to become friends with him and his devoted wife, Terrie—the love of his life.


Our first Network meeting in Durham was indeed sacred. I learned that the meeting room where we gathered at Duke University’s Divinity School was the same place where Dr. Payne had first spoken on the topic of AA-ACP. We felt an air of peace and solidarity of mind for the work at hand—the right place, the right time, and for the right reason. Sacred indeed.


I believe I speak for us all in the Network when I say that we are committed to advancing equitable healthcare and service delivery to the most vulnerable persons in our society. I am honored to be a part of that mission. As we move forward in furthering the work of the AA-ACPN, we also continue the monumental legacy of Dr. Payne’s incredible lifework and vision.



GLORIA THOMAS ANDERSON, PhD, LMSW

Advance Care Planning & Health Living Through Faith

African American Advance Care Planning Palliative Care Network member

Full Article

When our colleague and mentor, Dr. Richard Payne, died suddenly in January 2019 following a short but aggressive illness, we gathered in Kansas City in April to celebrate his life and to explore how we might continue his legacy work in advance care planning with African American faith communities. 


Richard had an idea of establishing a network of leaders, believers, doers, mentors and healers – ministers of the body and physicians of the soul – to bring this sacred work to fruition. We knew his death meant that without his physical presence, we had to capture his essence in another way. So, we invited the most dedicated, brilliant, innovative and inspirational group of leaders we could find already at work in this space, often inspired and encouraged by Dr. Payne’s life and work. We asked them to join us at the end of July and first of August in a gathering at Duke Divinity School – if not in person, then virtually.  Nearly everyone in the room and online had been profoundly touched and nurtured by Dr. Payne in our work as ministers and pastors, social workers and community advocates, physicians and researchers, nurses and ethicists. They all said yes and many added, “Amen.”


Terrie Payne opened our meeting asking us to determine how we would act on the conviction about her Richie’s life that called us to chart the next steps of this journey.  And so, we began. Rolling up our sleeves, we got to work.


CPB’s role as convener was to facilitate and unleash the energy and imagination of one of the most powerful group of leaders ever assembled to discern this unchartered, and as yet incomplete, journey.


Our work will require investigating and recalling dozens of efforts and myriad resources spanning decades of work while re-creating new approaches and tools. We will discern the leadership and evolving network to carry this work deeper into our communities and beyond. This will be Rich’s legacy and it will become ours. Stay tuned and join in the journey.


Pictured below are those who were with us in person on Day 2. In addition, we were joined online by Yvonne Delk, Chris Brady, Lauren Van Scoy and Vivian Anugwom. 


From left to right on the Back Row:

Kimberly Johnson, Patrick Smith, Janice Bell, Cindy Leyland, Cynthia Carter Perilliatt, Marisette Hasan, Tammie Quest, Julie Boudreau, Corey Kennard, Harriet Holloway, Diane Deese, Ronit Elk

Front Row:   

Gloria Ramsey, John Carney, Karen Bullock, Toya Booth, Gloria Anderson, Terrie Payne, Gloria White-Hammond, Pamela Witt


Full Article

When our colleague and mentor, Dr. Richard Payne, died suddenly in January 2019 following a short but aggressive illness, we gathered in Kansas City in April to celebrate his life and to explore how we might continue his legacy work in advance care planning with African American faith communities. 


Richard had an idea of establishing a network of leaders, believers, doers, mentors and healers – ministers of the body and physicians of the soul – to bring this sacred work to fruition. We knew his death meant that without his physical presence, we had to capture his essence in another way. So, we invited the most dedicated, brilliant, innovative and inspirational group of leaders we could find already at work in this space, often inspired and encouraged by Dr. Payne’s life and work. We asked them to join us at the end of July and first of August in a gathering at Duke Divinity School – if not in person, then virtually.  Nearly everyone in the room and online had been profoundly touched and nurtured by Dr. Payne in our work as ministers and pastors, social workers and community advocates, physicians and researchers, nurses and ethicists. They all said yes and many added, “Amen.”


Terrie Payne opened our meeting asking us to determine how we would act on the conviction about her Richie’s life that called us to chart the next steps of this journey.  And so, we began. Rolling up our sleeves, we got to work.


CPB’s role as convener was to facilitate and unleash the energy and imagination of one of the most powerful group of leaders ever assembled to discern this unchartered, and as yet incomplete, journey.


Our work will require investigating and recalling dozens of efforts and myriad resources spanning decades of work while re-creating new approaches and tools. We will discern the leadership and evolving network to carry this work deeper into our communities and beyond. This will be Rich’s legacy and it will become ours. Stay tuned and join in the journey.


Pictured below are those who were with us in person on Day 2. In addition, we were joined online by Yvonne Delk, Chris Brady, Lauren Van Scoy and Vivian Anugwom. 


From left to right on the Back Row:

Kimberly Johnson, Patrick Smith, Janice Bell, Cindy Leyland, Cynthia Carter Perilliatt, Marisette Hasan, Tammie Quest, Julie Boudreau, Corey Kennard, Harriet Holloway, Diane Deese, Ronit Elk

Front Row:   

Gloria Ramsey, John Carney, Karen Bullock, Toya Booth, Gloria Anderson, Terrie Payne, Gloria White-Hammond, Pamela Witt


Full Article