National Healthcare Decisions Day 2.0

In the future, those of us who survive 2020 will use words like “scary,” and “uncontrollable” in describing this pandemic year. But right now, you can control one very important aspect of your life – the end of your life. I’m not being flippant. It’s true.

Due to the pandemic, National Healthcare Decisions Day (NHDD), which is always the day after Tax Day, is doing a reboot or a second round – a 2.0. Since Tax Day was moved to July 15, NHDD is moving to July 16. NHDD has always used the “death and taxes” slogan to remind people to complete or review their advance care directive.

On the Center for Practical Bioethics website, we’ve made it easy to host an NHDD health fair-type event at your hospital or organization with your choice of two marketing kits.

If you’re an individual who hasn’t completed your advance care directive, we offer a free download from our website of our workbook in English or Spanish. 

Whether you are an organization or an individual, you can call us anytime if you have questions or need guidance on advance care directives.

So 2020 is scary and much of what’s happening may be uncontrollable, but hosting an NHDD event or filling out your directive can be an easier accomplishment in 2020 with the Center’s resources.

Written by Monica Delles

Ethics Consultation in COVID Times

Q:  What happens to clinical ethics consultation in a pandemic?

A:  Ethics consultation continues, only more so.

During the first few months of the coronavirus pandemic, with a significantly lower overall inpatient census and fewer providers seeing outpatients, ethics consultation at the University of Kansas Health System (UKHS) increased rather than decreased. Not all of the increase is COVID related. Most consultations reflect issues that arise during normal times as well.

Typical Issues, New Perspectives

Some consultation has been COVID specific, including participation on the UKHS Pandemic Triage Team assisting in preparation of guidelines for allocation of scarce resources under crisis standards of care. If hospital admissions exceed our critical care capacity, who gets an ICU bed? If there is just one ventilator available and two patients need ventilation support, who gets it and who is allowed to die? Or the shortage may be of personnel, or dialysis, or medications. Who decides and how? These are matters of ethics.

Ethics consultation services, both at UKHS and the Center for Practical Bioethics, are always available. Always.

Early in this pandemic situation, we responded to queries about a provider’s duty to care and ethically appropriate exceptions to the rule. Other consultation addressed the need to encourage advance care planning further upstream of arrival at the Emergency Department by patients in COVID-19 crisis. Decisions then may need to be made emergently about resuscitation attempts on a patient who may not have wanted it, or for whom CPR will almost certainly be futile—and riskier also for those who provide it. Heightened risk to providers sometimes spawns awareness of ethics issues. This was discussed at great length most everywhere relative to shortages and conservation of personal protective equipment (PPE).

The UKHS Ethics Consult Service responded recently to several situations of ethics dilemma regarding decisions for patients who also are prisoners. Who decides for a ward of the state? Can the patient’s mother be contacted directly, or only by permission of the warden? Ought we allow prison guards in the COVID “hot zone”? Not all such cases arise as a direct result of a pandemic, but there seemed more of them recently, perhaps with correlation to the inordinately high incidence of coronavirus transmission within incarcerated populations.

Same Process, New Technology

Consult requests can come at all times, pandemic or not, and at all hours of the day and night. Health system ethics consultants typically are happy to respond with ethics assistance at 3 or 4 A.M. even on a holiday weekend, as happens occasionally for this consultant. I might heat up a cup of coffee before picking up the phone to return a call after the Ethics pager has gone off in the wee hours, but it is a privilege to collaborate with resident physicians and night shift nurses on ethical care to patients—whenever need arises.

The UKHS ethics consult service has been carried out during COVID times both virtually and with physical presence in clinical settings. For the most part, we are doing “tele-ethics.” Like tele-health generally, we too make optimal use of confidential email, phone calls, Zoom meetings, and ethics notes posted to the electronic medical record. Some of our consultation team members are considered “essential” healthcare workers in their primary roles of physician, nurse, social worker, or administrator. That has enabled us to offer physical presence at the bedside or on the unit when face-to-face communications are necessary or at least better than virtual only.

Ethics consultation continues during COVID times as it did before this global strangeness began. Pandemic conditions may have put the pause on elective services for a time, but Ethics is never elective. Ethics consultation services, both at UKHS and the Center for Practical Bioethics, are always available. Always.

By Tarris Rosell, PhD, DMin

Dr. Rosell is the Rosemary Flanigan Chair at the Center for Practical Bioethics and  Director of the University of Kansas Health System Ethics Consultation Service and Co-Chair of its Hospital Ethics Committee. He is also the Center for Practical Bioethics’ 2020 Vision to Action Award honoree.

Ethical Issues in OB/GYN Inspire Board Service

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

Board Chair, Center for Practical Bioethics

Walking Humbly with a Sacred Mission

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

Lifetime Achievement in Bioethics

Center for Practical Bioethics Founding Executive Myra Christopher Honored by American Society for Bioethics and Humanities 

Forty years ago, a young Johnson County, Kansas, homemaker stood by her mother’s grave and promised to spend the rest of her life working to ensure that those living with serious illness could have their wishes honored and values respected. That same year, her college philosophy professor introduced her to a new “movement” called bioethics that advocated for patients to actively engage in their own care. Following graduation, from 1984 through 2011, she served as founding executive director of the Center for Practical Bioethics in Kansas City.

On October 20, 2017, Myra Christopher’s four-decade journey will culminate in her acceptance of the 2017 Lifetime Achievement Award from the 1,800-member American Society for Bioethics and Humanities (ASBH) at the national association’s conference hosted in Kansas City.

Early in Christopher’s career at the Center for Practical Bioethics, she and her founding board faced challenges like court reporters, judges and lawyers appearing in hospital rooms to intervene on end-of-life decisions. Hospice care was, for the most part, still rare.

Unlike the half dozen academia-based bioethics centers that existed at the time, the vision for the Center was to create an independent, free-standing nonprofit that converts bioethics theory into services and resources to serve real patients, families, providers and policymakers facing real-life healthcare issues and crises in real time.

In recognition of Christopher’s role in achieving this vision, ASBH professionals from clinical and academic settings along with those from medical humanities throughout the country will present her with its most prestigious honor in afternoon ceremonies at the Sheraton Crown Center Hotel in Kansas City, Missouri.

Christopher, who credits her success to early believers and supporters, will be honored along with Steven Miles, MD, who is recognized for his contribution to bioethics scholarship and devotion to the alleviation of suffering.

In announcing the award, ASBH stated: “Christopher’s work has changed how shared decision making among families helps to match the care a loved one receives with his or her wishes, how hospital ethics committees respect and advocate for the rights of patients, and how communities care for those with terminal illness.”

In response to the ASBH announcements, congratulations from national and local leaders in healthcare have poured in, as exemplified below:

Myra Christopher has long been a hero of mine. Her values and unwavering commitment to service represent a personal True North.

Ira Byock, MD, Founder & Chief Medical Officer
Providence Institute for Human Caring, Torrance, CA

Myra Christopher is part of a group of pioneering women – in which I include Dame Cicely Saunders, Florence Wald and Elisabeth Kubler-Ross – each of whom stood up, powerfully and strategically, on behalf of people who are suffering. Because of Myra, the beginnings of a transformation towards person-centered care has begun.

Diane Meier, MD, FACP, Director of the Center to Advance Palliative Care
Mount Sinai Health System, New York, NY

Myra Christopher’s contributions to improving care for patients at the end of life are emblematic of some of the best features of bioethics. Rather than simply engaging in research (which she also does), she has shown how commitment and intelligent action can lead to changes in policy and practice that actually improve the lives of patients.

David Magnus, PhD, Director of the Stanford Center for Biomedical Ethics
Stanford University, Palo Alto, CA

As we continue to wrestle with ongoing issues in bioethics (end-of-life care, protection of human subjects, pain management, etc.), as well as enter into new challenges in bioethics (new technologies, genomics, healthcare financing, etc.), we will all benefit from the legacy of your work and be better prepared to bring bioethics down to that “practical” level that you have so successfully advocated.

Betty Drees, MD, FACP, FACE, Professor of Medicine and Dean Emerita
University of Missouri-Kansas City School of Medicine, Kansas City, MO

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

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

Kathy Greenlee, 

VP for Aging and Health Policy

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

Four distinct concepts emerged:

1) the perspective of the person as patient,

2) similarities and differences between shared decision-making and supported decision-making, 

3) the balance between what is “important to” a person and “important for” a person, and

4) the need to see a patient within the context of their family, however defined.

Person-Centered Communication

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

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

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

Negative Stereotypes

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

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

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

Shared vs. Supported Decision Making

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

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

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

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

Patient Centered Care vs. Person-Centered Planning

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

Each of us are patients for only part of our lives. Robert Sattler, partner with Support Development Associates showed us a variety of documents that reflect a person-centered plan. Imagine taking a sheet of paper and some colored markers. Draw a big cartoon balloon and in it describe what you like and who is important to you. Then in another balloon, list things you don’t like. And for the third section, describe medical information that is important for others to know. In this simple manner, it is possible to capture the essence of someone in a way that is much different than an electronic health record. 

The core concept in person-centered thinking is to create a framework for identifying what is important to people while also identifying what is important for a person. For high-risk patients, professionals often focus on what is important for that person, motivated by a concern for health and safety. But a sole focus on health and safety – patient-centered care – overlooks what is unique about a person and what makes them happy. Person-centered planning challenges us to find the right balance; for someone to be both happy/satisfied and healthy/safe. A person will not do what important for them unless there is a connection to what is important to them. 

Family Relationships

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

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

The tool captures aspects of life most of us never focus on, yet each of these life domains add unique value and opportunity to the experience of life. The six domains are:

1) daily life and employment

2) community living

3) safety and security

4) healthy living

5) social and spirituality

6) citizenship and advocacy

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

The Bioethics Connection

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

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

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

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

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

Death with Dignity?

Tarris Rosell, PhD, DMin

What Kansans Need to Consider about House Bill No. 2150

(“The Kansas Death with Dignity Act”)

How would you answer the following question if a Gallup pollster asked?

When a person has a disease that cannot be cured and is living in severe pain, do you think doctors should or should not be allowed by law to assist the patient to commit suicide if the patient requests it?

As of mid-2015, nearly 7 out of 10 Americans polled answered that question, “Yes,” including 48% of those who attend church weekly. The vast majority of Americans, and 81% of young adults ages 18-34, currently favor physician-assisted suicide (PAS). Are they right? Could that large a majority possibly be mistaken?

Kansas legislators, like those in most states, have had opportunity to consider making PAS legal. It is already legal, with restrictions and regulations, in several other states, most notably Oregon, Montana, Vermont and Washington, and as of this year California. The addition of California now makes the question relevant to 1 in 10 of all Americans. The 1994 Oregon “Death with Dignity Act” served as the model in California, and also for Kansas House Bill No. 2150, introduced last year. No hearing was held.

Governor Jerry Brown, a Catholic Christian, recently signed that CA legislation after much thought. Kansas Governor Brownback, also a Catholic, seems unlikely to sign such a bill even if it were to get out of committee and garner enough support to get through both chambers of the Kansas legislature. Is this good public policy? Or are we wrong-headed in the Heartland?

One of the influences credited with raising Gallup percentages especially among young people was the physician-aided death of 29-year old Brittany Maynard.

Brittany was living in California when diagnosed with glioblastoma multiforme, an aggressive form of terminal brain cancer. After much research and discussion, Brittany decided to move with her husband and mother to Oregon so as to qualify for that state's "death with dignity" protocol. After establishing residency and meeting with physicians, Brittany received her lethal prescription of drugs, to be used or not at the recipient's will. If taken as a means to end life, Oregon law specifies that the drugs would need to be taken by Brittany's own hand. No one could do it for her.



Upon experiencing multiple seizures and cancer-related pain, Ms. Maynard decided to take a lethal dose of medications prescribed for this purpose, and thereby end her life on November 1, 2014. Close family and friends accompanied her at the time of departure. It was said to have been a peaceful death. Was it a "death with dignity?"

In a dialogue group I attend monthly, involving mostly physicians and chaplains, the Brittany Maynard case was discussed after viewing a six-minute YouTube video posted by Brittany prior to her death. I have facilitated discussion of this case with groups of seminarians and medical students, also. Each time, I poll the participants on their opinion of PAS. Regardless of the group, percentages mirror those of Gallup. So should the majority rule in Kansas on this matter?

A hospice physician friend suggested that Brittany Maynard might have utilized palliative care in hospice. He acknowledged that this could not guarantee a death without pain and suffering, but that hospice care places value on a dying patient’s dignity. Indeed, most surely do, and most hospice deaths seem relatively peaceful. This is what I, and most bioethicists I know, advocate rather than expanding access to PAS. It may well be that the American majority has been misled, and that the better way to achieve death with dignity is to promote palliative and hospice care—especially for those groups who don’t have access to comprehensive care. But really, for all of us.

Brittany and at least 859 other terminally ill patients in Oregon over the course of the last 15 years or so, have chosen a different route to their deaths. Even in Oregon this remains a remote event, affecting only about 3 deaths in 1,000. I don’t condemn them nor their assisting physicians. Condemnation gets us nowhere good. I urge thoughtful and respectful ethics dialogue instead.

I advocate for better advance care planning, earlier end-of-life conversations between patients and their physicians, and more robust discussions about goals of care in advance of health crises. Increased public funding seems necessary so as to train more palliative care and hospice physicians. More research, and research funding, is needed for rigorous evaluation of the care currently being provided to dying patients.

This seems to me the better path to death with dignity, not only in the Heartland but everywhere.

How does it seem to you?

RESOURCES:

• http://kslegislature.org/li/b2015_16/measures/documents/hb2150_00_0000.pdf
• http://www.gallup.com/poll/183425/support-doctor-assisted-suicide.aspx
• http://www.gallup.com/poll/171704/seven-americans-back-euthanasia.aspx
• https://www.youtube.com/watch?v=1lHXH0Zb2QI
• http://thebrittanyfund.org/category/videos/
• http://www.washingtontimes.com/news/2014/oct/31/oregon-womans-assisted-suicide-decision-sparks-deb/?page=all
• http://www.wsj.com/articles/a-doctor-assisted-disaster-for-medicine-1439853118
• https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year17.pdf
• http://www.deathwithdignity.org/access-acts

Tarris Rosell, PhD, DMin, is the Rosemary Flanigan Chair at the Center for Practical Bioethics.

Rapping about Dying

ZDoggMD is something of a celebrity among physicians and medical students. He is the “Weird Al” Yankovic of the medical world – parody songwriter extraordinaire, satirist of medical culture and, at his best, a seriously funny human being. Whether lampooning hospital readmissions or mocking anti-vaxxers, his music videos bring humor to physicians’ challenges as well as their follies.

But listen closely and you will find that, beneath the humor, there often lies a serious message in ZDoggMD’s lyrics. The parodies aim to entertain healthcare workers, of course. But they also seek to educate. “Let’s just prevent readmissions/manage those chronic conditions/need time preparing the handoffs/move along to other clinicians,” he raps in “Readmission,” a parody of the R&B hit “Ignition (remix).” In the music video, ZDoggMD utters these lines in a hospital ward, wearing a lavish fur coat and sunglasses in the fashion of a rap musician. The routine is absurd – and funny – but the goal is more than mere entertainment. ZDoggMD’s light touch of humor warms us up for a serious conversation on a topic that is no laughing matter.

Ain’t the Way to Die

For his latest video, “Ain’t the Way to Die” (a parody of Eminem’s “Love the Way You Lie”), ZDoggMD forgoes humor altogether – a first, according to his blog. Stripping away humor, the song takes a more direct approach to talking seriously about a topic that many of us prefer to avoid – death and dying. As ZDoggMD writes, “…we too often fail to have those difficult but crucial discussions about dying, and this failure leads to untold human suffering and billions in squandered resources. We are failing as caregivers, we are failing as family members, and we are failing as individuals – failing to simply have a conversation that ensures that we direct our own destiny. Plainly put, we need to talk about dying.”

Talking about dying is hard. It’s uncomfortable. As a medical student, I’ve become acutely aware of the discomfort. I feel it too, even as an observer. For all of us, the challenge is to communicate effectively about death and dying in spite of the discomfort, and in that regard ZDoggMD’s sentiment too often rings true: We are failing as caregivers, family members, and individuals to have these crucial conversation about the end of life.

Conversation Starter

Thankfully, there are people working to make these conversations a little easier. Caring Conversations, a resource developed by the Center for Practical Bioethics, for years has guided patients and their families through the process of advanced care planning. In its own way, ZDoggMD’s “Ain’t the Way to Die” can also facilitate these conversations, by melodically breaking the ice on death and dying: “Just gonna stand there and watch me burn/end of life and all my wishes go unheard/they just prolong me and don’t ask why/it’s not right because this ain’t the way to die, ain’t the way to die.” 

The musical stylings may be off-putting to some, but for those who enjoy rap music – and those who can tolerate it – the lyrics of “Ain’t the Way to Die” succeed in broaching a wide range of end-of-life issues, from family discord to resuscitation. And this brings us to what is perhaps the greatest virtue of “Ain’t the Way to Die” – that the breadth of issues addressed in the short video makes the parody a conversation-starter for healthcare workers and patients alike.  

All of us must find a way to communicate clearly in conversations about the end of life. “Ain’t the Way to Die” may help some of us find the words to do so. With that in mind, I encourage you to watch the video and share it with others.  No matter one’s background or profession, each of us will one day face the end of life. Starting a conversation about how you want to face it gives you the best shot at doing it on your own terms. 


Written By Joel Burnett. Joel Burnett is an MD candidate at the University of Kansas School of Medicine.

Chronic Pain -- The Invisible Public Health Crises

Chronic Pain -- The Invisible Public Health Crises

A Call for Moral Leadership

“I am an invisible man. No I am not a spook like those who haunted Edgar Allen Poe: Nor am I one of your Hollywood movie ectoplasms. I am a man of substance, of flesh and bone, fiber and liquids- and I might even be said to possess a mind. I am invisible, simply because people refuse to see me.”
- Ralph Ellison

Ralph Ellison’s famous novel, The Invisible Man, starts with this passage, which also reminds me of the problem of chronic pain. The Institute of Medicine (IOM) report, Relieving Pain in America, documented the more than 100 million Americans (almost 1 in 3 and surely someone whom you know and love) suffers from chronic pain, at an economic cost of $6 billion and an incalculable psychological cost. We named pain as a “disease” because of its profound effects on the brain and its interference with multiple domains of the quality of life of sufferers. The committee identified chronic pain as a public health problem, given the sheer numbers affected, and the opportunities to intervene to prevent acute pain from becoming chronic pain. However, the report is now almost four years old, and it is fair to say has not really moved the needle in doing what we implored in the IOM report—“changing the way in which pain is judged, managed and perceived.” Why is that?

Because pain is subjective -- and therefore difficult to measure by the usual medical tests -- it is often doubted. As someone once said, my pain is real, your pain is in doubt. Also, we live in profound cultural ambivalence about pain. Cultural icons such as  Julius Caesar and Albert Schweitzer have been quoted as saying that pain is worse than death, but there is also an ethos of “no pain, no gain.” Medical interventions, particularly powerful opioid drugs such as morphine and oxycodone, although essential to manage acute and persistent pain, come with a cost of many side effects and may induce psychological dependence in some. Persons in pain and their doctors fear addiction, although we do not truly know the risk of addiction in persons taking opioids who have not abused recreational or illicit drugs. For these and other reasons, on an individual and societal level, we prefer to ignore the problem of chronic pain, unless confronted by it in our personal lives.

So how do we advance the moral imperative to address pain and suffering in contemporary medical practice, as required by our ethical codes and professional oaths? How do we bring the invisible suffering of so many to light and work to alleviate it? I think we commit ourselves to five big goals:

1. We advocate for more and better science to understand the underlying neuroscience of pain production and modulation. This requires advocacy at the NIH and other federal agencies to fund worthy science related to pain mechanisms and clinical trials of pain treatments.

2. We advocate for more and better drug development, including the creation of abuse deterrent opioid formulations and novel non-opioid based analgesics. This will require advocacy for effective public-private partnerships between the pharmaceutical industry, academia and federal agencies.

3. We advocate and demand better education of health care professionals to live up to their obligations to be competent and to attend to pain and suffering in their patients. We also advocate for better public education so that persons suffering with chronic pain understand that this is a disease, and not subject to quick fixes.

4. We advocate and demand better policy solutions to provide sustainable and patient-centric interdisciplinary pain treatment programs that truly address patient and provider needs. 

5. Finally, we need effective collaboration on a shared policy agenda between pain specialists and substance abuse specialists to advocate for comprehensive, rehabilitation-focused care for chronic pain, and greater access to substance abuse treatment for those persons who have a dual diagnosis of chronic pain and addiction.    

These are my thoughts. What do you think?

Richard Payne, MD
John B. Francis Chair, Bioethics
Center for Practical Bioethics

Esther Colliflower Professor of Medicine and Divinty
Duke University

How Future Doctors Think

How Future Doctors Think
Flanigan Lecture Explores How Medical Students Make Sense of Their World

 What kind of physician do you want? Do you want someone who, out of respect for your autonomy, explains treatment options but makes no recommendations, leaving the decision up to you? Or do you want something more?

If you want something more, the research conducted by Felicia Cohn, Ph.D., who presented the 19th Annual Rosemary Flanigan Lecture on July 30, 2013, underscores the importance of knowing how your doctor thinks and helping him or her to understand your story.

Patterns in Their Stories

When Dr. Cohn taught medical ethics at the University of California-Irvine School of Medicine, she noticed patterns in the stories medical students shared concerning conflicts they encountered between their personal values and professional obligations and what they did about them. Her colleague at UCI, Humanities Director Johanna Shapiro, wondered if there might be a way to analyze and identify themes from these stories as told in 299 papers Dr. Cohn had collected.

“The themes of the students’ narratives really did fall quite neatly into six categories,” said Dr. Cohn.

• Restitution (38%)  - Appealed to a moral norm or ethical principle.
• Compromise (16%) – Conceded core values.
• Journey (16%) – Grew through experience.
• Witnessing (13%) – Felt empathy but stood by and watched.
• Resistance (9%) – Rejected professional ethics in favor of personal views
• No Problem (2%) – Never experienced any conflict.

“I thought the papers would tell a lot more stories about witnessing and compromise, which were the type of stories that the students mostly shared in class,” said Dr. Cohn. “But it turned out that restitution – appeal to principle – was the most common story they told. And more often than not the principle the students appealed to was autonomy. In other words, it’s okay for me to do this because it’s what the patient said he wants.”

Autonomy or Guidance?

Dr. Cohn explained that this emphasis on autonomy in modern medical culture has important implications for both healthcare professionals and their patients.

“If physicians really think what a patient is doing is wrong but feel that respecting autonomy takes precedence, they’re going to be spending a lot of time doing things that they think are wrong. Then they’re miserable and we go and ask them to be nice to patients. I can’t help but think that’s where a lot of the dissatisfaction and even burnout from healthcare professionals comes from.”

Conversely, for the patient who wants more than options from their physician – who wants their physician to consider how their illness and treatment will integrate into their life and make honest recommendations based on that – then the doctor who tells a restitution story probably isn’t the doctor for them.

Learn more at http://www.PracticalBioethics.org

Medical Futility: Wrong Medicine?

Lawrence Schneiderman, MD

In this edition of The Bioethics Channel host Lorell LaBoube visits with the co-author of a new book, Wrong Medicine - Doctors, Patients and Futile Treatment.

Links:

Podcast, The Bioethics Channel

Wrong Medicine: Doctors, Patients, and Futile Treatment, Book Review, Journal of the American Medical Association, February 1, 2012

Glenn McGee named as John B. Francis Chair in Bioethics

Glenn McGee, PhD, will assume the John B. Francis Chair in Bioethics on January 1, 2010. He follows John D. Lantos, MD. The chair was established in 2005 through a $3 million endowment from the Francis Family Foundation to the Center for Practical Bioethics.

The Francis Chair was designed for an individual with national stature in bioethics, a proven track record in teaching and research and proven leadership qualities in fostering excellence in collaboration. In addition to his research, Dr. McGee will engage in public outreach, and consult with policymakers on medical ethics issues.

“Dr. McGee brings enormous expertise, experience and energy to his new role as the John B. Francis Chair in Bioethics,” says Myra Christopher, president and CEO of the Center. Dr. McGee is known for a pragmatic approach to bioethics, making him a perfect fit for the Center for Practical Bioethics.”

Links:

Francis Chair Announcement

Bio brief, Glenn McGee, PhD

Podcast, Introducing: the new John B. Francis Chair in Bioethics, The Bioethics Channel, 11 minutes 39 seconds

What's MORAL about mammogram policy?

Rosemary Flanigan

November 20, 2009

There’s value and worth under discussion here—and that value and worth are justified by a utilitarian calculus: balancing harms over benefits. But there is no objective “harm” or “benefit” in utilitarianism. When it comes to mammograms, women in their 40’s might well determine “worth” and “value” differently.

To increase our awareness of how much of our lives are shot through with moral considerations—and how much we should be open to questioning the justification for those judgments or policies or habits that stream along with us—is a hallmark of ethical reflection.

I think of the bundles of institutional “habits” or policies that make up a healthcare organization. We assume that 98% of them can be justified—and we’d never get any work done if we were reviewing them all the time.

But that “ethical component” is integral to the “character” of the entire institution.

Reflecting on Moral Habits

Rosemary Flanigan

October 14, 2009

This is teaching week for me—to medical students working on their Bioethics M.A. and to nursing ethics committee members. With the students, I want to show them how their moral sense develops and how we often argue with ourselves over those conclusions—or certainly with others about their conclusions. And that arguing is “doing” ethics if it is so framed and if it is good reasoning (thus a nose-to-nose look at logical fallacies).

My hope is that they know there is no judgment that cannot be challenged. We may still cling to it following the ethical reflection, but we’ll know why.

But with the nurses (and less time), I’m making them reflect on moral habits. After all, each of us is bundled habits (or bundles of bundled habits), and here again, we need to take some time to reflect on whether or not we are becoming what we hope to become.

With all the new docs entering the profession presuming on the aid of ethics committees and all the nurses knowing they are expected to be reflective in their profession, what a marvelous future ethics committees have—if they are constantly upgrading themselves. But that leads me to credentialing, and I’m not ready to take that subject on –not yet.

So give a whoop and holler that you’re part of the movement.

Home Stretch for Health Reform

John Carney
Vice President for Aging and End of Life
Center for Practical Bioethics

The health reform debate lurches into October with an uncertain prognosis. John Carney of the Center for Practical Bioethics gives an update and talks about a series of Center public forums on health reform in this edition of The Bioethics Channel.

Links:

Podcast: Home Stretch for Health Reform, 11 minutes 5 seconds

Three Myths about the Ethics of Health Care Reform, Association of Bioethics Program Directors, October 1, 2009

Getting an "A" in Pain Policy

Robert Twillman, PhD
13 minutes 25 seconds

Kansas gets an “A” … Missouri a “C” for state policies addressing pain. What does that mean for physicians and patients when it comes to treating pain?

Dr. Robert Twillman explains in this edition of The Bioethics Channel. He is a Clinical Associate Professor of Psychiatry and Behavioral Sciences at the University of Kansas School of Medicine.

Links:

Getting an "A" in Pain Policy podcast

Archive: The Bioethics Channel

Assessing Quality of Ethics Case Consults

Rosemary Flanigan
September 25, 2009

I feel so fortunate to have you conscientious discussion-groupers when I have a vexing question—and I am vexed by the first article in the recent Cambridge Quarterly.

George Agich is the guest editor for the issue on "Consultation: Time for Assessment and Evaluation." My query is about assessing the quality of our case consults.

I have been helping to drive our ethics committee at Carondelet Health for 19 years and the only specific “quality assessment” we have conducted is through the self-assessment tool prepared by the Consortium.

On Case consultation, there are 11 questions:

Who may ask for a consult?
Questions about the screening process
What happens to a case that is “screened out”?
How is the consult addressed (individual? a few members? the whole?)
Response time
Required consents
Who else is involved?
How documented
How reported and to whom?
Written procedures?
Have we reviewed Core Competencies?

But how ought we to assess the quality of the consult? Do any of you have a specific time to do it? A tool to use?

It’s as if I’ve neglected something very important.

HELP! HELP!

Humor in Healthcare a Serious Business

Humor in Healthcare a Serious Business

Hob Osterlund, RN11 minutes 54 seconds

The Center for Practical Bioethics honored nurses, social workers, chaplains and allied health professionals with Frontline Action Awards during activities September 8 in Kansas City.
Hob Osterlund, RN, palliative care nurse and nationally known humorist, presented her unique approach to health care before an audience of more than 200 people.

In this edition of The Bioethics Channel, Hob explains how her comic character, Ivy Push, RN, reflects the absurdities that take place all too often in healthcare.

Links:

Celebrating with Frontliners, Hob Osterlund, RN, Lectures in Bioethics, September 8, 2009 34 minutes 39 seconds

Humor in Healthcare a Serious Business, Hob Osterlund, RN, You Tube, September 8, 2009 6 minutes 14 seconds

Ethics Consultation: what is at stake and for whom?

Rosemary Flanigan
September 18, 2009

The recent issue of Cambridge Quarterly for Healthcare Ethics arrived at home and the entire issue is devoted to reviewing and assessing ethics consultation. One of the articles asks, “Is Consent Necessary for Ethics Consultation?” and it shows that consults may be called for participants other than the patient.

Thus one must ask what is at stake and for whom.

An example given is the cardiologist who is the attending physician for an elderly gentleman for whom he has provided care for over a decade. All along, the patient has insisted that he not end up debilitated and in a nursing home, but here it is, the fifth hospitalization in the past 18 months and the old gentleman is on mechanical ventilation, is in acute renal failure, has a variety of infections and a prolonged altered mental status.

The cardiologist has talked to the family and they have agreed that life support be withdrawn and their father allowed to die. It was at this point that the cardiologist requested an ethics consultation—not for the purpose of reviewing the case or checking the hospital’s DNR policies/terminal weans but whether or not this the “right” time to stop.

If this were your ethics committee, would you invite the family into the consult?

Organ allocation and doing justice

Rosemary Flanigan

September 11, 2009

A student is writing an ethics paper on whether or not criminals are eligible for transplants—so let us give her some help. I would suggest that she read the policy and procedures of the transplant network which is in place.

Judging justly, I would deem there would be few—if any—discriminations mentioned—not age, certainly not social worth. I would imagine that the procedures were focused on physical condition and time spent on the waiting list. If she wants to argue scarcity of organs, then how will she argue allocation—and do justice?

I would think the heart of her argument would be found in the materials of the transplant network. Am I wrong???