Working for Equity and Justice in Healthcare
Barbara Atkinson’s interest in medical ethics emerged from her experiences while doing cytopathology (the diagnosis of cancer and infections from the examination of cells) as a faculty member at the University of Pennsylvania.
“If, for example, you make a diagnosis of cancer,” said Barbara, “you’re obligated to tell the patient’s physician. But sometimes the patient’s family calls wanting information that’s not really appropriate for me, as the pathologist, to tell them. What if the patient wants to keep the information private?”
Later in her career, as chair of the Department of Pathology and Laboratory Medicine at the Medical College of Pennsylvania and subsequently as Annenberg Dean of the Medical College of Pennsylvania Hahnemann School of Medicine (now Drexel University College of Medicine), Barbara faced ethical issues at the institutional level. Such as whether to dismiss a medical student who’s done something inappropriate or unethical. Or, the limits around which an institution should be able to benefit from a business that grew out of an employee’s research project.
“Some issues are cut and dry,” said Barbara. “Clearly, if a patient hasn’t given approval to share information with the family, then it’s not okay to do that. But many issues fall right on the line, and that’s where the Center helps. The issue could have to do with chronic pain, which is very important because you have to find the balance between avoiding addiction versus not providing enough medicine for pain relief when necessary. Physicians often need to get help in making those types of decisions.”
Barbara left Philadelphia to head the Department of Pathology and Laboratory Medicine at the University of Kansas School of Medicine and in 2002 became Dean of the School of Medicine and then in 2005 also became executive vice chancellor, responsible for the school’s efforts to recruit new faculty and expand KUMC’s biomedical research and other programs. Throughout her university career, she helped lead small groups in medical ethics courses for medical students.
Having served on the Institute of Medicine since her election in 1997 and as a member of President Obama’s Presidential Commission for the Study of Bioethical Issues, Barbara brought a national perspective to her role as vice chair of the Center’s board of directors.
“The Presidential Commission,” she said, “gives advice to the President, the Secretary of Health and Human Services and anyone in the government who requests help in dealing with a major bioethical issue. It’s comparable to what the Center does, just at a different level.”
Judy Bellome looks back on her 30 years of involvement with the Center for Practical Bioethics with many fond memories. But, she says, one of the highlights has to be staying up all night talking with Sister Rosemary Flanigan when they were roommates at The Elms for a nursing seminar where Sister Rosemary was on the faculty.
Judy’s relationship with the Center began in the mid-1980s, when hospital ethics committees in the Kansas City area were getting off the ground, most of them having been formed and trained by the Center. Judy, who was the executive director of Clinicare, a nonprofit home health agency in Wyandotte County which later merged with the Visiting Nurse Association, went to hear Bill Bartholome, a pediatrician, bioethicist and teacher, speak at an ethics workshop at KU Medical Center.
A Great Idea That Worked
Inspired by Bill’s message, Judy approached Myra Christopher, the Center’s president & CEO, for advice on how to start an ethics committee for Clinicare, since home health agencies like hers were certainly facing many of the same types of ethical issues as hospitals.
“Myra said, ‘Great idea! Why don’t you meet with Bill and ask him to help you get started.’”
But, as Judy explained, “Meeting with Bill was like meeting with Socrates. He was a very strong, assertive person, and he felt it wasn’t necessary for us to have an ethics committee.” Instead, he encouraged her to bring her home health cases to KU for review.
That didn’t make sense to Judy—or Myra, who must have convinced Bill. Bill called Judy back, sent her materials from The Hastings Center on how to set up ethics committees, and came to a Clinicare board meeting to provide guidance.
The Clinicare board, chaired by Dr. Robert Potter, voted to establish the area’s first home health agency ethics committee, headed by Dr. Potter with Bill as an ex officio member and Sister Rosemary on occasion to train members.
Cases That Mattered
Two early cases stand out for Judy.
“We had a very elderly woman, fiercely independent, who had had Parkinson’s and several heart attacks. She lived alone in a high-rise apartment building in Kansas City, Kansas, and was developing memory issues. At least twice, she had forgotten to turn off the stove.
She wanted to stay in her home, but at the same time the committee could see that endangered the lives of others.”
The committee explored options and, in the end, helped the woman find an assisted living facility where she shared a two-bedroom apartment with an able-bodied woman who was lonely. The two women became good friends.
The second case—very different from the first but memorable because of its impact on the agency’s sustainability—involved an uninsured patient. Clinicare was one of the few agencies on the Kansas side that took referrals from people without insurance. But it had reached a point where doing so was undermining financial stability. Recognizing that this jeopardized the agency’s very existence, the ethics committee was called upon to draft a new agency mission statement.
“Basically, the new mission statement said that Clinicare would provide healthcare and in-home health services, with a bullet underneath that it would do so in such way to ensure financial viability,” said Judy.
A Great Idea That Wouldn’t Work
Clinicare was ahead of its time, but Judy credits Bill’s stature, Myra’s perseverance and Sister Rosemary’s pedagogical prowess for her success in convincing other home health agencies and hospices that belonged to the Kansas City Regional Home Care Association to start their own ethics committees.
Judy retired in January 2013 as CEO of Douglas County Visiting Nurses and Hospice in Lawrence, Kansas, and remains “very proud” of her relationship with the Center. She wonders if someone could raise a lot of money by auctioning off a night of conversation with Sister Rosemary, like the one she had at The Elms, but quickly realizes why the idea wouldn’t work: “I’m afraid,” said Judy, “that the bidding would go too high and Sister Rosemary would get embarrassed.”
Not too many people say that an organization not only changed their lives, but that it also changed the way they live life—and how they hope and plan for its end. Bert Berkley, happily married for 64 years to Joan Meinrath Berkley, is one of them. Bert explains that Joan became interested in end-of-life issues and got involved with the Center for Practical Bioethics after taking care of his and Joan’s mothers, who both died at age 97 and lived within a few blocks of each other.
Joan was a faithful advocate for the Center for Practical Bioethics and began her service on the board of the Center in 2002. She served in a number of positions, including chair of the Board of Directors during her decade of board membership. She attended Center events regularly and advocated with energy and passion for good end-of-life care. She spoke regularly about the importance of holding a “caring conversation” about end-of-life wishes. She was honored with the Center’s highest award, Vision to Action, in 2011.
Joan was diagnosed with cancer in 2003 but it hardly slowed her down until its reappearance in 2011. Joan died peacefully on September 14, 2012, at home, with Bert and their children by her side.
“As a result of her involvement with the Center, my wife learned a great deal about end-of-life issues, how to handle oneself, the importance of saying goodbye and making sure others have the opportunity,” Bert said.
Joan’s understanding of end-of-life issues left so deep an impression that, months after she died, Suellen Fried, in paying tribute to Joan at the Center’s 2012 Annual Symposium, remembered her wisdom word for word:
Shortly before she died, my husband Harvey and I were having dinner at Joan and Bert’s home and Joan posed a question to us. She said, “Everybody keeps telling me how strong I am. I am not feeling strong at all. I wonder why people are using that word.”
So I said to Joan, “Well, what is the word? How do you feel?”
“I feel free.”
I said, “Tell us about ‘free.’”
“I feel free to cling to my grandson and sob deeply in each other’s arms. I feel free to have the most unimagined, intimate conversations with my husband. I feel free to wake up every morning and not have any idea how it will evolve. I feel free to be in the presence of my friends’ tears.”
And then she pleaded with anyone and everyone she was in contact with: “Don’t wait until you’re at the end of life to have those unimagined, intimate conversations.”
And, so, a year since his wife’s death, at his 90th birthday celebration, Bert could say, “Though I miss Joan deeply, I’m back and I’m enjoying life. You have to live life to its fullest each day. And I attribute that to the Center. Basically, the Center changed our lives and did so in a very positive way.”
A patient would be on a ventilator and the hospital would want a court order to permit removal. Mary Beth Blake, an attorney for the University of Kansas Medical Center, would call the judge in Wyandotte County, who would come to the hospital with his court reporter, where they would all go into the patient’s room and the doctor would describe the patient’s condition.
“There might be some assessment of the patient’s wishes,”’ recalls Mary Beth, a co-founder of the Center for Practical Bioethics and now a senior partner with the Polsinelli law firm in Kansas City. “Then the judge would issue an order that it was okay to withdraw ventilation.”
She told her friend, Karen Ritchie, “There’s got to be a better way of doing it.”
There was. In 1983, Mary Beth and Karen, a psychiatrist at the University of Kansas Hospital, approached Dr. Hans Uffelmann, professor of philosophy and Medicine at UMKC, for his help in co-founding a bioethics center in Kansas City.
Mary Beth realizes she had no idea at the time how the Center would affect her or her brother’s lives. Her brother, Don Reynolds, JD, worked at the Center and is now a research assistant professor and director of the Office for Responsible Research at the MU Center for Health Ethics at the University of Missouri in Columbia.
“What we were doing must have rubbed off on our parents,” said Mary Beth.
“Our dad, knowing that he could make his own decisions about how he would die, elected to forego any treatment for pancreatic cancer when he was well into his eighties. He died on his own terms quickly and with excellent caregivers.
“Our mom was over 90 and her body, but certainly not her mind, was giving out. She suffered tremendous pain and had one wish, which was expressly stated on her advance directive. And that was to die at the Kansas City Hospice House.”
Mary Beth tried for two months to get her mother in for a palliative care consult, but it was an uphill battle to convince her doctor that her mother didn’t mind paying for the visit and that it would not be Medicare fraud for him to copy her records and send them to the palliative care doctors at Kansas City Hospice.
“Lucky for my mother,” said Mary Beth, “she had a bad reaction to attempts to treat her pain, which led to a determination that she was a candidate for hospice care. She was fortunate to spend her last weeks just as she wanted, and she died peacefully without pain.”
Thirty years ago, Mary Beth admits that she must have thought the Center was a “really cool idea.” Today, when she thinks about how the Center has affected her life, it’s the personal impact that first comes to mind.
“All the years of working with the Center,” she said, “gave me the fortitude and tools to fight her battles with the current healthcare system and to help her find the place that could alleviate her pain and provide a path for her final journey that was what she wanted.”
Myra Christopher still thinks about the young couple who wanted children so desperately that they went to extreme measures to have them and whose marriage was later threatened by that same process.
The couple called the Center on Friday and Myra came in to meet with them the next morning. The issue was what to do with unused cryopreserved embryos that had been harvested several years earlier and resulted in the couple’s two healthy children.
The husband wanted to destroy the remaining embryos, or donate them for research or to another couple struggling with fertility. The wife believed that destroying them was the same as “killing your child,” nor could she imagine consenting to them being used for research. She said that if they were donated that she would look at every child resembling their own and wonder, is that our child? Her solution was to have all the embryos implanted in her at one time.
“We had a long conversation,” she said. “We talked about science, religious views and, from an ethics perspective, what this has to do with ‘moral status’ of being. Does a human embryo have the same status and rights as a fetus or born child?”
Myra never learned what the couple decided to do or whether the marriage survived. She hopes the time she spent with them helped them to arrive at a mutually acceptable course of action. Today, post “octomom,” although fertility clinics are still not strictly regulated, most fertility specialists will not implant more than three embryos at one time. As a result, such conflicts are less likely to occur.
Yet, all these years later, said Myra, “When I think about this young couple, I am still struck by the intersection between scientific capacity and moral, ethical and religious thinking. How complicated it all is and how often in our society we think that facts or science will solve all of our problems. However, it does not. Actually, it transforms age-old ethical issues into new problems. What is life? When does it begin?”
The Veteran and His Band of Brothers
Joe knew he made the right decision when he sold his house in a small town and moved into a veterans’ home. After all, his wife had died, his two daughters lived elsewhere, the home provided good quality care that he needed to manage his diabetes and, most importantly, he was happy living out his remaining years with his fellow World War II veterans, his “band of brothers.”
After a few years, however, the ulcers on his feet would not heal, and hemorrhages in his eyes made it impossible to read anymore. In consultation with his physician, he decided to stop taking his insulin.
The Center got involved when the daughter called with a question. She wanted to know if the facility could force him to take insulin and if the Center could help.
Joe felt he had accomplished everything he wanted in life. His physician at the home had fully informed him about what would happen if he stopped the insulin. His daughters had discussed their father’s plan with him and his physician and, sorrowfully but respectfully, accepted his decision.
A social worker at the home had gotten wind of the plan, called the state attorney general’s office to find out if the home and its employees might be held liable for participating in his suicide, and had been told that they would, in fact, be exposing themselves to manslaughter charges.
“I knew this was not right,” said Myra. “The Cruzan decision made it clear that adults with decision-making capacity can choose or refuse any medical or surgical treatment. It also said that states have the right to require a specific standard of proof that these are the patient’s wishes. Missouri has set the highest bar, clear and convincing evidence. So here you have an adult with capacity expressing his wishes, a supportive physician and family. What other evidence could you want or need?”
But it wasn’t enough for the home’s administrator. Even after the Center held an ethics consultation by phone with providers at the home and suggested having hospice take over Joe’s care there, the home gave the family two choices: Joe could continue to take his insulin or he could leave. Joe chose to leave. He was admitted to a nursing facility for hospice care near one of his daughters.
“The tragic part was the price he had to pay to have his wishes honored,” said Myra. “That he had to leave his band of brothers. We sent a young man to Europe to fight and when he’s an old, dying man, we won’t let him die. At least he died the way he lived, independently, in control, with family by his side.”
The Center for Practical Bioethics reminds Helen Emmott of a country western song, “The House that Built Me.” As the woman in the song drives by the house she grew up in, it reminds her of all the stories that took place there.
“I say that the Center is the house that built me,” said Helen.
For most of her life, Helen wanted to be a nurse, but after years of pediatric and adult intensive care nursing, she was unhappy and couldn’t figure out why.
“It was only after studying bioethics and my internship at the Center that I realized it was because the voices of the patients and families were missing. All we wanted to do was keep them quiet. We didn’t want families in the hospital. They bothered us. We had important life-saving stuff to do!”
Helen left her active nursing practice to obtain a degree in philosophy at the University of Missouri-Kansas City. “It was for fun,” she said. “And then I took a course from this German philosopher, Hans Uffelmann, and learned about the field of bioethics. When I discovered that he founded the Center, I asked if I could do an internship there and he said yes. That’s how I got hooked on the Center.”
What Was It Like in 1991?
The day in 1991 when Helen started her internship was the same day Rosemary Flanigan, recently retired from teaching philosophy at Rockhurst University, joined the Center staff.
“At the time,” recalls Helen, “the Center was holding town meetings. Lots of discussions about justice, the allocation of healthcare resources, affordability, managed care, the rights of minors, organ transplants and a big emphasis on the education of nurses.”
The Center enabled Helen to discover what made her unhappy as a nurse. “It taught me that my discomforts were justified. It not only reaffirmed my passion for nursing, but made me realize I wasn’t a bad nurse. I was a really good nurse who wanted to be a lot better.
“Combining nursing and ethics was a way to integrate the compassion I had as a nurse with my desire to give patients and families a voice, a dominant voice,” she said.
After graduation, Helen returned to the Center, first as a volunteer and, over the next two decades, through several periods as an employee, a board member and, during CEO Myra Christopher’s leave and transition to fill the Kathleen M. Foley Chair for Pain and Palliative Care, for six months as the Center’s interim president and CEO.
Growing with the Center
Myra was quick to recognize Helen’s passion and potential. “I honestly believe she thought I was smarter than I thought I was,” said Helen. “She always stretched me to the point where I was scared to death. ‘You can do this,’ she’d say, “dragging me all over the United States with my two bachelor’s degrees teaching people with MDs, PhDs, JDs! She, Rosemary and Hans are my three mentors.”
One of Helen’s early projects for the Center was the Nursing Leadership Institute. Nurses dedicated to improving end-of-life-care in their communities who were accepted into the program came to Kansas City for an intensive week of training and support in ethics and end-of-life care. At week’s end, participants chose a project, such as forming an ethics committee, fighting for better pain control and promoting advance care planning. Students went back to their communities and reconvened a year later to report on the results of their projects. Helen was responsible for everything from finding speakers to arranging transportation, food, housing, scholarships and student projects. She wishes now that she had data on the number of lives affected by these projects.
On another initiative, Helen traveled throughout the State of Alabama with researchers from Tuskegee University’s National Center for Bioethics in Research and Health Care to model the Center for Practical Bioethics’ community-based approach. Helen helped lead town hall meetings and interview prisoners about their hopes and aspirations with regard to end of life.
She was also instrumental in the Center’s “Trusting Our Differences” initiative, which included a grant from the Kellogg Foundation and the Wyandotte Health Foundation for a comparative study of cultural differences in end-of-life preferences. “What we found,” said Helen, “was that there are no cultural differences in what people want as much as there were horrible disparities and biases in their care.” Helen still uses the cultural sensitivity tool that came out of that effort in her teaching of healthcare ethics.
A Family Affair
The Center not only changed Helen’s life but also had a significant impact on members of her family. The Center’s influence on her husband, David, a urologist, led him to change the power balance in his approach to patients.
He told Helen: ‘I used to be so proud of my bow tie and white coat. Whether I was giving people good or bad news, it made me feel confident. After being involved with the Center, I learned to take off my white coat, scoot my chair over to the patient, and promise them whatever happened, I would be by their side.”
Cameron, their son, now working in finance and married with two children, developed an autoimmune intestinal disease in his early 20s that required three major surgeries and 15 hospital stays over five years. Helen believes that Cameron’s equanimity and understanding that human lives are more than a diagnosis derived, in large part, from being “dragged” to the Center. Maggie, one of the Emmotts’ two daughters, is a medical student planning to specialize in pediatrics and dedicate her practice to the poor and underserved, particularly among non-English speaking families.
And then there was Helen’s mom.
“My mom, who had an 8th grade education, divorced my dad after 54 years of marriage and moved to Kansas City,” said Helen. “At the Center, we were just starting to work on Caring Conversations® and she got involved. She wrote a letter to her 10 kids about what was in her advance directive and what was important to her. She had a peaceful death because she, and we, all knew that she didn’t have to do anything that she didn’t want to.”
Helen has never fully retired from nursing, finding opportunities to fulfill that passion through mission trips to Haiti and volunteering as a pediatric nurse at Turner House Clinic in Kansas City, Kansas. She earned her Master’s in Bioethics and Healthcare Policy from Loyola University in Chicago and hasn’t given up on the idea of a PhD. She’s thrilled now to be teaching a course on ethics and morality in contemporary health issues in the same classroom at Rockhurst University where Rosemary taught.
Helen’s most recent project has been writing a book about her and David’s experiences and lessons from caring for both of their aging moms.
“Every chapter has a story about my family or a friend that parallels something that I learned at the Center,” she said. In the preface, I acknowledge my husband, Myra, the Center, the Shepherd’s Center and the organization that funded me to write it, the O’Connor Foundation.
“It’s dedicated to my mother-in-law and my mother,” she said, “because, if with no money and no education, after 54 years of being married to a Baptist minister you can reclaim your autonomy, do your advance planning, buy a sports car, control your life and control your death, anyone can!”
Like most emergency medical services (EMS) providers, Angela Fera used to refer to the toughest cases as “difficult scenes” or “complex calls.” Now she calls them ethical dilemmas, and she has the tools to respond to them.
Back in 2009, Angela was a relatively new paramedic, having jumped off the international finance corporate ladder and into an ambulance, when she attended a panel presentation titled “Ethics in Emergency Medical Services.” Presented by an EMS system medical director, a bioethicist and two chaplains, the training was designed to give participants “a thoughtful approach to dealing with potential ethical dilemmas.”
Angela was struck by the revelation that what EMS often referred to as a “difficult call” was, in fact, evidence of ethical conflict.
“We just don’t call it that,” she said. “We weren’t trained to recognize it. But I could then see how ethical conflicts affect our everyday interactions with patients, family members, partner agencies, medical staff and the media.”
Two years later, Angela read an article, “Why EMS Needs Its Own Ethics,” that suggested that the traditional medical ethics model may not fit the unique role EMS plays in the healthcare system. The authors urged readers to update their EMS Code of Ethics, as well as to offer written opinions to help EMS agencies develop better policies and protocols.
Certificate in Clinical Ethics & Health Policy
Angela took that challenge to heart and began searching for an ethics education program that would support her work toward that goal.
“When I compared the Certificate Program in Clinical Ethics and Health Policy at the Center for Practical Bioethics to other Master’s-level programs, I quickly recognized how the program would specifically meet my needs,” she said. As she learned, the Certificate in Clinical Ethics and Health Policy is designed for:
… professionals whose work is intertwined with healthcare. The program gives students the tools to identify, understand and analyze ethical issues and is designed for healthcare practitioners as well as administrators, risk managers, researchers, academics, journalists, lawyers, etc.
She also appreciated that the structure of the program—two online courses and a seven-day intensive—would allow her to manage both her personal and professional responsibilities and still obtain the education she sought.
Angela enrolled in the Certificate program in June 2012, two months before Johnson County MED-ACT appointed her as EMS educator and public information officer, with primary responsibility for training fire department personnel. Prior to that, since 2004, she had been a paramedic/lieutenant with MED-ACT.
“The Certificate program provided me with the foundational philosophical principles to analyze ethical dilemmas, a framework for how ethics is practiced in the context of multiple healthcare settings, and a very deep appreciation for the care with which policies and protocols should be written.
“As a result,” she continued, “I am a better patient advocate and educator, and I have become a resource that can drive change within my profession. The program also helped me to develop a network of people and resources that I can go to for guidance as the role of EMS evolves in healthcare delivery.”
A Good Plan
Ironically, it was the Center that turned to Angela when questions arose as to how to involve EMS in its bi-state effort in Kansas and Missouri to achieve adoption of Transportable Physician Orders for Patient Preferences (TPOPP).
TPOPP translates vulnerable patients’ preferences into physicians’ medical orders via a form that follows the patient in any setting and is modified in response to the patient’s changing medical condition and preferences.
Angela had just started the Certificate program when she received a call from Sandy Silva, the Center’s TPOPP manager, who invited Angela to join the TPOPP leadership team working to integrate EMS protocols into the TPOPP initiative.
Within a week of Sandy’s inquiry, Angela ran a “difficult call” that perfectly demonstrates why TPOPP matters, how TPOPP fits into EMS, and what makes it a valuable tool for EMS providers faced with ethical dilemmas.
Angela recounts the call:
We were dispatched to a Code One Closest, which means the highest priority emergency. The call type was difficulty breathing. We were met at the door of the residence by patient’s husband, who said, “My 62-year old wife has terminal cancer and is at home on hospice. She has an Out of Hospital Do Not Resuscitate Order (OHDNR).”
When I found her, she was unresponsive with agonal respiration and a palpable carotid pulse, which meant she wasn’t in cardiac arrest so the OHDNR didn’t apply. Her husband told us she did not want to go to the hospital because she didn’t want to die in the Intensive Care Unit (ICU). He also told us that he was her second husband and that she had three adult children who needed to be part of the decision whether to treat and transport her to the ER or not.
So her condition was “respiratory failure.” Given her condition, our current protocol would direct us to treat her aggressively and manage her airway while transporting her emergently to the ER, where you can presume she would be put on a ventilator and admitted to the ICU.
The ethical dilemma required us to reconcile the patient’s wishes with our policy and protocol.
We asked the husband to contact hospice and the adult children and have them come to the scene. We began to provide supportive oxygenation and ventilation. We feared the family wouldn’t agree with his representation of her wishes or they would want something different for her. Fortunately, they all arrived, including hospice, and everyone agreed that she wouldn’t want to go to the hospital. Everyone was on board.
So instead of treating and transporting—as our protocol and policy would require—we called medical control, which is an emergency room physician at the hospital on the radio. We provided the patient presentation, history and shared what had been communicated to us by the family and hospice, and we requested orders to transfer care to hospice and clear the scene.
That’s not what we do. Typically, the physician on the radio might say, “I don’t know that patient. I’m not familiar with her history. I can’t assess her over the radio, so go ahead and bring her in and we’ll sort it out when you get here.”
That’s what we expected. Instead, he said, “That sounds like a good plan. Give the family our condolences, transfer care to hospice and clear the scene.”
We did just that. Back at the station, we had a debrief session because that was so unusual for us to do. Both the fire department and ambulance crew felt like it was the right thing to do for the patient and family, but it didn’t fit in with what we’re used to doing. How would we document such an unusual situation?
On a typical call, crews are on the scene for 10 to 20 minutes. On this one, they were there for 45 minutes.
A Better Plan
The patient on this call was fortunate that the physician on the radio agreed to the plan. If she had been taken to the ER and admitted to the ICU at the hospital, her wishes would only be honored when she went into cardiac arrest.
Since then, any time Angela lectures on ethics to EMS, she includes information about TPOPP. She eventually sees TPOPP expanding to improve care provided to other populations. Recently, Johnson County MED-ACT has been approached by school districts for resources to ensure that end-of-life wishes are honored for students who have complex medical histories, often including physicians’ orders and Out of Hospital DNRs.
“Had the doc on that call said, ‘You need to transport,’ we would have had no choice. We would have had to bring the patient to the hospital,” said Angela. “We face that kind of moral hazard all the time. TPOPP allows us to call it what it is—an ethical dilemma—and provides a tool that enables us to honor patient autonomy.”
“For me, the work of the Center for Practical Bioethics—from the Certificate in Clinical Ethics and Health Policy to my involvement in connecting TPOPP to EMS—has been integral in helping me build the toolkit I began searching for in 2009.”
When journalist Cathy Lynn Grossman started at USA TODAY in 1989, no one at the paper was covering religion, and she could see that they were missing a lot of great stories.
Nine years later, she created the religion, ethics and spirituality beat at USA TODAY and, over the next 15 years, covered just about every big story involving religion, from papal transitions and Billy Graham to atheism and the rise of the “nones,” people who don’t identify with any religious denomination.
Intriguing Questions, Complex Answers
The more she wrote about religion, the more questions arose that intrigued and deepened her interest in the field of bioethics. Questions like why a person might be considered to be alive if he or she were no longer conscious. Answers like the one provided by C. Ben Mitchell, PhD, assistant professor of bioethics and contemporary culture at Trinity International University.
“Mitchell essentially said, ‘Just because you can’t think of God doesn’t mean that God doesn’t think of you.’ That was a stunning concept,” said Cathy, “because it really helped me get a grip on the religious perspective. It helped me realize that in secular bioethics, without consciousness you’re not really there; but from the religious perspective, consciousness is not a relevant question.”
In the summer of 2005, Cathy was awarded a Templeton Foundation Journalism Fellowship in Science and Religion, which required a major writing project. Cathy’s was on the vocabulary of death and dying. For example, what does a “meaningful life” mean and who decides? The answers she found continued to intrigue her.
Certificate in Clinical Ethics
Back at USA TODAY after the fellowship, the idea of a second career in communications related to bioethics began taking shape in Cathy’s mind.
“Still,” she said, “I bumbled around for years seeking ethics sources. The more I wrote about ethics issues, the more I realized I lacked solid background in the philosophy and practice of biomedical ethics. And the more I learned, the more deeply interested I became.”
Cathy had known about the Center for Practical Bioethics for years and turned often to its staff for background and sources to interview on various topics. Along the way, she had learned about the Center’s Certificate in Clinical Ethics and Health Policy.
The Certificate program consists of three courses taught by nationally recognized faculty, including two 12-week classes are offered online and one onsite course. The two online classes – one on the philosophy of clinical ethics, the other on practice of clinical ethics – complement each other and are elected consecutively, beginning with either class. The seven-day intensive course, convened in Kansas City, Missouri, is elected after successful completion of both online courses.
“The Certificate program looked doable while working full-time and it offered the opportunity to develop my knowledge base and analytical skills,” she said. “The content suited my needs, while other programs I briefly considered were too focused on the needs of only medical professionals. Also, the Center specifically included journalists among those invited to apply to the program, so I felt welcome.”
A New Career
In 2013, when USA TODAY offered a buyout, Cathy knew she was ready to wrap up 43 years in newsrooms and move on. Her last day at the paper, May 10, 2013, was two days before she flew to Kansas City for the intensive course.
Cathy soon started her second career – joining Religion News Service (RNS) as a senior national correspondent in September 2013. She specializes in covering research and statistics related to religion and ethics and keeping an eye on bioethics issues.
For example, when the Pew Research Center issued a comprehensive new survey on views on end-of-life medical treatments (Nov. 2013), Cathy wrote four RNS stories. One looked at the overall findings. Another focused on the definition of quality of life and two stories included sources drawn from her Center for Practical Bioethics experiences. Terry Rosell, Rosemary Flanigan Chair in Bioethics at the Center, worked with Cathy for her story on how Hispanics and African-Americans make different choices than non-Hispanic Whites. And Sandy Silva was a key source for a story on different types of advance directives, which included the Center’s TPOPP (Transportable Physician Orders for Patient Preferences) video.
“The dominant takeaway for me from the Certificate program was respect,” said Cathy.
“Respect for the complexity of biomedical ethical questions in a time of contesting religious, personal and legal value systems.
“Respect for the difficulty and life-altering significance of efforts to find consensus and/or compromise.
“Respect for the challenge of communicating biomedical dilemmas and decisions to the general public.
“Respect for the need to acknowledge at all times the essential human dignity of all involved.
“My Center for Practical Bioethics education has taught me to ask better questions of a wider range of sources. I feel significantly better prepared to write stories about complex biomedical and public health issues that are accessible and engaging to the general public, yet still offer the sophistication and accuracy demanded by readers in the medical and ethics professions.
“Not to be forgotten,” adds Cathy, “are the friendships I’ve made through the Center. It’s all one great package from the Center for Practical Bioethics.”
When the Center for Practical Bioethics sought voices of religious leaders to be part of the bioethics conversations taking place in the 1990s, Dr. Robert Lee Hill, senior minister at Community Christian Church, was among the first that they called upon. Bob was quick to respond.
“I was honored by the invitation,” he said, “because these conversations were about things that really matter—life and death, right and wrong, community and individual freedom—and I was excited to be part of this wondrous creation, a community-based bioethics center.”
Years later, Bob remains an “ardent champion” of the Center. “You would think they’ve been around for 150 years, considering what they’ve accomplished in 30,” he said, and then explains why.
Advance Care Planning
Bob ranks the Center’s work to promote advance care planning at the top of the impact scale, citing the Patient Self-Determination Act of 1990, which the Center helped Senator John Danforth’s staff to draft and enact, as a signature achievement. The Act requires all facilities receiving federal funding to educate consumers about their rights and to honor patients’ advance directives.
Still, recognizing the limitations of legislation and legal documents, the Center developed a workbook, “Caring Conversations®,” which has been distributed to thousands of people, including Bob’s congregants, to help guide them, their families and friends through the process of advance care planning.
“For years,” said Bob, “we’ve had stacks of workbooks about the importance of making known what one wants to happen to oneself if incapacitated, to have those ‘caring conversations.’” Bob has several advance directives and powers of attorney that church members have asked him to keep on file.
“So if they ever become incapacitated, they want me to reinforce their wishes. If the Center did nothing else but this in its entire history, it would be an exemplary organization.”
But the Center has done more.
Compassion Sabbath, which Bob co-chaired with the Rev. Kelvin Calloway, senior pastor of Second AME Church in Los Angeles, was a major initiative of the Center’s Robert Wood Johnson Foundation funded project, PATHWAYS: A Community Approach to Improving End-of-Life Care.” Launched in 1998, Compassion Sabbath mobilized clergy and religious leaders to develop tools to address the spiritual needs of seriously ill and dying persons in Greater Kansas City.
“It was a wonderful way to gather interfaith constituencies on a focused, non-sectarian project,” said Bob.
The ETC Institute evaluation of the project validated its impact in Greater Kansas City. According to the report, Compassion Sabbath:
• Enhanced the quality of ministry to the seriously ill
• Increased the number of people involved in ministry to the seriously ill and dying
• Increased participation in programs designed to enhance end-of-life ministry
• Raised the level of concern about ministry to the seriously ill and dying
• Enhanced the ability of congregations to minister to the seriously ill and dying
• Increased familiarity with and use of resources to help with ministry to the seriously ill and dying
If a complex ethical issue arises concerning a hospital patient who is a member of Community Christian Church, Bob knows that most area hospitals will consult with him along with the family.
“That wouldn’t have happened 20 years ago,” he said, crediting much of the change to the Center’s work to develop and train ethics committees and to nurture communication among stakeholders, particularly clergy and physicians.
Bob’s connection to the Center led to his participation in a clergy-physician dialog group formed by Steven Jeffers, PhD, who was the Director of Spirituality in Health at Shawnee Mission Medical Center.
“Myra Christopher heard me many times express great consternation that once there was a terminal diagnosis, the oncologist or someone else would throw the baton to the clergy and seemingly wash their hands of the patient. That led Myra to recommend me to this group, which I participated in for the past decade.”
Bob describes the book Jeffers wrote with Michael Nelson, Vern Barnet and Michael Brannigan, The Essential Guide to Religious Traditions for Health Care Providers, published in March 2013, as a “gift to the world,” a Merck’s manual for medical communities to care for patients from different religious backgrounds.
“I also think the Center does a wonderful job in trying to deal with disparities in healthcare,” he said. “There is, for example, huge, well-deserved mistrust of medical personnel by the African American community because of the Tuskegee syphilis experiments. The Center has served as a broker on one wonderful conversation after another to engage and connect to constituencies of color.”
Asked to speculate on the future, Bob predicts that end-of-life issues and justice will continue to command the Center’s attention.
“What can we afford for how many people? What we can do to enhance the quality of life for people who are going to grow a lot older than their forebears? These are nettlesome questions.
“The Center is perfectly positioned—better than any other bioethics center in the world—to address them because they aren’t overseen by a hospital or educational institution or think tank funded by a particular partisan perspective. They have great freedom. They are independent and unafraid to engage people who might have other positions. They can broker civic and civil conversations where others can’t.
“They are also great at balancing engagement at all levels, meaning they don’t just deal with heads of hospitals and philosophy professors with armchair views of end-of-life issues. They deal with the thoughtful, practicing nurse and clergyperson at the bedside. They are conversant with movers and shakers at the policy and legislative level and, at the same time, at the point of delivery of care.
“More people need to know about the Center as a way of being in the world when it comes to matters of supreme significance.”
“Everything the Center does came together for me in one fell swoop,” said Sean Hogan, remembering his grandmother, Betty Townsend, with whom he spent a great deal of time growing up and who passed away in 2009 at the age of 95.
Sean is the co-founder and account director of DMH, an advertising agency that specializes in linking traditional, digital and social media design. Sean became interested in bioethics and discovered the Center in the early 1990s – in a different life he might say – when he was an attorney involved in malpractice work.
“There was one particular case with a doctor I was working with,” he said, “who had done everything above and beyond the standard of care but was feeling a sense that he should have done more.
“I knew some folks at the Center and reached out for information that would help me coach and get him in the right mindset. The great thing about the Center is that they don’t take a stand. They provide information that helps people make their own choices.”
Sean joined the Center’s board of directors in 2008. His deep affection for his grandmother is obvious when he describes how the Center affected his whole family at the end of her life.
“She was bright as a whip,” he said, “and living in an assisted living facility when she started to deteriorate. She’d had a few incidents in the previous couple of years where she had literally flat-lined and come back. The running joke in my family was that she wasn’t going to go until she was darn good and ready.”
During that time, messages that Sean had heard as a board member became profoundly relevant and meaningful: Make your wishes known for future healthcare. Appoint someone to speak for you when you can no longer speak for yourself. Do it for yourself. Do it for your loved ones. Do it now.
“In the two years leading up to her death, we sat down with her and had the conversation,” he said.
Sean truly realized the impact the Center had on his entire family as his grandmother lay dying in the hospital. “The doctors came in and said they could keep her alive a few more months but that there was little chance she would regain consciousness.
We said, unequivocally, that she would not want this. One of her physicians took us aside in the hallway and said, ‘You all need to understand that this is the greatest gift you can give a loved one. The fact that you’ve taken the time to talk about this and fulfill your grandmother’s wishes is a very beautiful thing.’”
Since Sean’s grandmother died, he and many other members of his family have documented their end-of-life wishes.
“No one likes to think about dying,” he said. “But to see the effect of doing so, allowing her to die with peace and dignity, had a profound impact.”
Linda Johnson joined the social work department at Saint Luke’s Hospital in 1986, about the same time the hospital was forming its ethics committee. Linda’s interest in ethics grew naturally out of her profession.
“As a social worker, I would take a contentious family, bring them together and help them find common ground. That’s exactly what ethics committees do.”
The Center for Practical Bioethics helped to form and train most hospital ethics committees in the Kansas City region. When the Center came to Saint Luke’s to present training, Linda was an enthusiastic participant.
Soon after, she joined the ethics committee, served as its chair for a number of years and signed on with the Center as a volunteer.
“I love public policy and the big picture,” said Linda, which helps to explain her passion for the issues the Center was addressing. Her background, dedicated to helping people be who they want to be, fit hand-in-glove with the Center’s core value of respect for human dignity.
Linda was at the table when the Center-led Kansas City Regional Hospital Ethics Consortium developed the first comprehensive initiative to promote advance care planning in the country. She helped the Center facilitate groups and draft ethical guidelines for caring for patients with HIV/AIDS, managed care organizations, hospitalized children, long-term care facilities, people with mental disabilities and for determining medical futility.
She participated in the Center’s work with the Joint Commission for the Accreditation of Healthcare Organizations to establish standards in organizational ethics and patients’ rights, helped launch Compassion Sabbath, and takes special pride in having been the one to name one of the Center’s signature resources, Caring Conversations®, a tool to help individuals and families think through and put in writing their wishes regarding end-of-life care.
Caring for Mom
Rare is the volunteer or employee of the Center whose personal life has not been touched by the experience. Linda’s work for the Center, from 1986 to 1995 as a volunteer and until 2002 on staff, helped ease the process of caring for her mother who lived 14 years with Alzheimer’s.
“In the last years of her life, when she had no capacity to communicate or make decisions for herself, I felt very comfortable and knowledgeable about what we would and wouldn’t do,” said Linda.
“The values that underlie an issue are second nature to me—in my work, in church and in my life. Theory, practice, policy! I love the mix and the Center pulled them all nicely together.”
Jim Spigarelli’s 43-year old daughter, Jane, her husband and five-year old son were in Kansas City for the family’s traditional Thanksgiving gathering in 2008 when Jane ended up in a local emergency room with abdominal pain and swelling that turned out to be metastatic ovarian cancer.
A chemist by training, Jim was chair of the Center for Bioethics Board of Directors. When his daughter was diagnosed, he was considering retirement from MRIGlobal, where he had spent the past 40 years of his career.
For Jim, battling to schedule emergency procedures to drain Jane’s abdomen in Kansas City and again at the major cancer center where she was treated in another state were eye-opening encounters with healthcare systems and their shortcomings.
As is standard upon checking into a hospital, Jane filled out a healthcare directive at the cancer center where she was first treated.
“Then she went to be treated in a clinical trial in California,” said Jim. “I didn’t know that the directive at the first cancer center had no value in California. By this time, she was suffering tremendously, but for whatever reason she was not able to complete another directive. So she lingered with artificial feeding and other extraordinary measures to keep her alive for nine months. It really pointed out to me the importance of having those directives follow the person wherever they go.”
Jim was also taken aback by the lack of information provided to his family regarding eligibility and potential costs and benefits of participating in clinical trials. Jim learned that the order of treatments matter because certain treatments can preclude participation in various clinical trials. Then, faced with decisions whether or not to participate in a trial, he discovered how difficult it can be to obtain information to make informed decisions whether or not to participate.
“There’s no advocate,” he said. “No one trained to tell people more straightforwardly and transparently what the situation really is.”
MRIGlobal had long been a supporter of the Center when Jim called former president and CEO, Myra Christopher, for advice on how to help his daughter and her family with hospice care in California. And, now, when discussions arise around such Center programs as Caring Conversations® and TPOPP (Transferable Physician Orders for Patient Preferences), Jim fully understands their impact on real issues in real life and real time.
In 1986 when Dr. John Yeast started Kansas City’s first Perinatal Center at Saint Luke’s Hospital, high-risk obstetrics and fetal treatment were fast evolving technically while raising controversial issues on “maternal-fetal conflict.”
“Basically,” explains Dr. Yeast, “that’s when you had complications that arose in pregnancy, determining who were the clinicians responsible for? Was there responsibility for the mother? Did the rights of the fetus supersede the rights of the mother? Could you intervene in a pregnancy without the mother’s consent? Some of these questions may sound crazy, but those kinds of things were happening.”
In the late 1980s, with help from the newly established Center for Practical Bioethics, Dr. Yeast spearheaded the development of “perinatal bioethics rounds” hosted by large hospitals throughout the metro.
“Complex maternal-fetal conflict cases, where either the mother or baby might be at tremendous risk but treatment of one or the other placed someone in jeopardy, were brought to a conference where everybody—physicians, nurses, ethicists and geneticists—could meet and dialog.
“I think it was very beneficial,” said Dr. Yeast. “We were able to get past some of the fundamental bases for these conflicts and discuss who we were responsible for first and how we would best approach managing some of these very complicated problems.”
Dr. Yeast provides examples:
A 16-year old girl from a small, rural community in Kansas discovered on ultrasound at 20 weeks that her baby’s heart might have a severe malformation incompatible with life. Her parents, the 15-year old father and his parents wanted to perform amniocentesis and consider termination. The girl opposed all of that. The consensus was that the girl had the right to make decisions regarding care for her and her baby.
A well-educated woman and her husband were pregnant with their third child, diagnosed before delivery with a life-threatening cardiac problem. With surgery, the child might live, at best, to his teen years. Instead, the couple wanted to deliver the baby safely, take him home and spend together whatever time they had. There were care providers who considered requesting the court to intervene. The consensus that emerged, however, was to support the parents’ wishes. The baby was delivered safely and died in his parents’ arms, at home, about six weeks later.
After four or five years, Dr. Yeast recalls, the perinatal ethics rounds were discontinued because medical staff and ethics committees were better prepared to deal with cases that might require review, knowing that the Center was available to consult on the most difficult of cases.
Dr. Yeast joined the Center’s Board of Directors in 1995 and served as president for two terms, from 2000 to 2003.
“I remained interested in the Center and remain interested today” he said. “The Board has always been made up not only of healthcare providers but attorneys and community leaders, which lends a broader understanding of how we should approach issues like end of life and all the complexities of care in hospitals.”