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.”