In Times Like These . . . What Should Bioethicists Do?
By Tarris (Terry) Rosell, PhD, DMin
Rosemary Flanigan Chair at the Center for Practical Bioethics
We live in difficult and disturbing times.
• We are entering the third year of a global pandemic, with nearly a million deaths in the United States alone, a public health crisis to which the response by tens of millions has been to protest public health measures on libertarian grounds and asinine conspiracy theories.
• Political partisanship has gone to extremes, becoming cult-like, dividing families and faith communities, destroying friendships and careers.
• The vitriol of “anti-vaxxers” too often has been turned on the very people to whom they turn for care when infected by the virus some had denied existed. Public health leaders, physicians and nurses are mocked or accused as fraudulent, sometimes even by patients who are dying of an infection they themselves easily could have prevented.
• Overworked, disrespected and stressed-out healthcare workers are burning out and quitting their vocation at rates not seen before.
What should bioethicists do in times like these?
What bioethicists—and the Center for Practical Bioethics—should not do, in my opinion, is become distracted and deluded into thinking that what we are doing doesn’t matter in times like these.
Hearing Patients’ Voices
When the Midwest Bioethics Center was founded nearly 40 years ago, it was to keep healthcare decisions at the bedside and out of the courtroom. Bioethics as a movement arose to ensure that patients’ voices were heard over the clamor of medical high-tech beepers and buzzers, products and procedures aiming to keep patients’ bodies alive longer and longer. Some thoughtful and compassionate clinicians wondered how to use all the new tools at their disposal so as to do patients some good and avoid harming them instead. Too many harms had been done already to human subjects from vulnerable populations in grossly unethical research protocols.
And so, bioethics was born, including the nonprofit entity that became the Center for Practical Bioethics. We created programs to promote advance care planning such as Compassion Sabbath, involving hundreds of faith communities regionally and nationally. Caring Conversations was published and distributed by the hundreds of thousands and continues to be. TPOPP, Transportable Physicians Orders for Patient Preferences, emerged to better align treatment plans with goals of care for patients with life-limiting illness.
We helped form, train and support dozens of hospital ethics committees, and continue to do so. We created the Ethics Committee Consortium and continue to lead and provide it with resources, including the monthly Ethics Dispatch. We have blogged and recorded hundreds of videos and podcasts, including a series we called “COVID Ethics Updates.” We have offered innumerable webinars and symposia. We are quoted by journalists. These all are things we have done and still do because we think it matters, even in times like these.
Weighing Oughts and Ought Nots
Back about the time the Center was born, bioethicists were being recruited to help address research wrongs that had been committed in many places. We collaborated on policies and procedures to prevent future abuses. We joined Institutional Review Boards (IRBs) for the protection of human subjects. We have always been involved in research ethics of one sort or another, and we are now. It’s what we do. We think it matters, even in times like these.
When bioethics began, clinical ethics consultants were trained to help patients’ voices to be heard, their wishes to be respected. We joined clinicians at the bedside to help think through questions of “ought” and “ought not.”
“We could trach and PEG this patient, but should we?”
“We have a homeless patient whose decisional capacity is questionable at best but needs his badly burned leg amputated or he will die. He says no to amputation. What does respect for the patient’s autonomy mean in this situation?”
Clinicians and decisional surrogates were asking ethics questions, and clinical ethics consultants came alongside to help. We continue to do so because patients still need to be heard and respected, because clinicians and families continue to be faced with moral dilemmas, because they still ask hard questions and request help from clinical ethicists. We come alongside to help because we think it matters, even or especially in times like these.
Several decades ago, bioethicists began working in schools of medicine and nursing and other health professions, in residency and fellowship programs also. We were recruited to help educate the next generations of healthcare providers and leaders, to prepare them to navigate virtuously the moral dimensions of healthcare. Bioethicists at the Center have always been deeply involved in medical ethics education, especially so during the past decade, touching the lives of thousands of students per year. We continue to do this work because we think it matters, especially in times like these.
Pursuing Equity and Justice
As bioethics matured, we noticed rampant and persistent disparities in health and healthcare. Some folks get more and better while other folks get less and worse. Bioethicists paid attention, researched, published, described what was happening, developed policies and programs to improve health and treat people more equitably. The Center has always had this inclination. Our programs have had titles such as:
• “Trusting Our Differences” (aiming to bridge racial and ethnic divisions)
• “Sabbaths of Hope” (addressing the stigma of depression and barriers to treatment)
• “MetroCARE” (matching pro bono specialty care providers with uninsured patients in need)
• the “PAINS Project” (helping us see the undertreatment of pain as an ethics problem)
• “Disaster Ethics” (a symposium aimed at preventing another “Katrina” tragedy)
Now we are working with vulnerable populations using strategies of civil engagement and “deliberative democracy” to advance health and social equity. Now too, we have embarked on grant-funded projects to help make artificial intelligence more ethical and less diabolical, or at least less discriminatory to those already marginalized.
We do all these many things because they do in fact matter, especially in times like these.
Staying the Course
It has been suggested that, given the difficult and disturbing times in which we live, there should be additional or alternative roles and responsibilities for bioethics and specifically for the Center for Practical Bioethics. Perhaps there are.
Alternatively, it could be that, especially in times like these, the role of bioethicists is mostly to not get distracted or discouraged or dissuaded or deluded along with so many others in our society. Our primary responsibility could be, in times like these, to stay the course and not forget what matters: patients’ voices, the moral dimensions of healthcare, ethical research, equitable access, non-discriminatory practices, civil discourse and community engagement, helping clinicians do the right thing, nurturing new generations of ethical healthcare practitioners, sharing our wealth of resources with those who need them.
It could be that these are the things that still matter for bioethics vocation, even and especially in times like these.
Tarris (Terry) Rosell, PhD, DMin
Rosemary Flanigan Chair at the Center for Practical Bioethics