Remembering Daniel Callahan

By Ruth Faden

It is with profound sadness and a deep sense of gratitude that we mark the passing of Daniel Callahan, who died on Tuesday, July 16th, just two days shy of his 89th birthday.

Callahan was without question one of the founders and intellectual giants of the field of bioethics. Over the course of an extraordinary career, Callahan wrote 47 books, 17 solo-authored. Nine of his books won national prizes; all took difficult topics to new levels of scrutiny and insight, and many expanded the horizons of bioethics inquiry. Callahan’s most recent book, for example, The Five Horsemen of the Modern World (Columbia University Press, 2016) explored climate change, food, and water as well as chronic illness, and obesity.

In the 1970s and 80s, when I was coming of age in bioethics, it is no exaggeration to say that Dan defined much of what was, and still is, the best of bioethics. His commitment to interdisciplinary inquiry, to rigorous engagement with opposing viewpoints, and to seeking solutions to complex problems was like a magnet to me and others that were looking for a way to make a difference in ethics and public policy.

For many in bioethics, Dan was an extraordinary mentor, advocate and friend who took genuine pleasure in the accomplishments of others. I will never forget one letter I received when I was appointed chair of a presidential committee in the 1990s. It was incredibly supportive and encouraging, a “you can do this” kind of note, signed “an anonymous admirer”. It took me barely a nano-second to deduce that the note was from Dan (who sweetly ‘fessed up in a phone call, replete with more words of encouragement and support).

Dan has inspired so many of us in bioethics in so many ways. A true public intellectual, Dan’s prodigious, probing scholarship remains unmatched in its unique combination of rigor and accessibility. Many of Dan’s insights and arguments will remain vital and vibrant well into the future.

But for all of his extraordinary scholarly accomplishments, Dan Callahan’s legacy will perhaps most be defined by the co-founding and flourishing of the Hastings Center.

At the celebration of the Berman Institute’s 10th anniversary we honored the first recipient of the Harvey M. Meyerhoff Leadership in Bioethics Award. A global civic leader, long-time trustee of the Johns Hopkins University, and member and chair of the Berman Institute Board, Harvey (Bud) Meyerhoff played a major role in the founding and success of the Berman Institute. In establishing the Meyerhoff Leadership Award the intent was to honor people who, like Bud Meyerhoff, exemplify extraordinary leadership, specifically within or in support of the field of bioethics.

The selection committee had no difficulty agreeing on who the first recipient of the Meyerhoff Leadership Award should be.

I can think of no one who better represents the ideals of leadership in the field of bioethics than Dan Callahan. In fact, the story of contemporary biomedical ethics cannot be accurately told without identifying the central role of both Dan and the Hastings Center.

In the late 1960s, Dan foresaw the need for an organization that could engage in systematic intellectual study of the ethical issues raised by the new technological medicine and the broader impact of this new medicine on culture. Serving as the director or president of the Hastings Center for its first 27 years, Dan helped guide the Center from a one-room entity in the basement of his house (supported by a small gift from his mother) into a major center for bioethics scholarship and public engagement.

Today the legacy of Dan Callahan, lies not only in the quality of Hasting Center’s own research projects and of Dan’s own scholarship, but also in the numerous other bioethics scholars and centers that Dan has helped spawn in the United States, Europe, and Asia.

All of us in bioethics are deeply indebted to Dan Callahan. Dan will be sorely missed but his voice and his presence will be ever with us.

 

Image: By Chip Porter – www.thehastingscenter.org, CC BY 3.0

Viewing Drug Shortages as a Public Health Crisis

In resource-rich countries, 5-year survival rates for children with cancer approach 85%. However, shortages in the drugs which make up the backbone of many proven and life-saving pediatric oncology regimens have become commonplace in the United States, with far-reaching consequences. In a paper published in the March 4 JAMA Pediatrics, Berman Institute professor Yoram Unguru and colleagues explore the causes and impacts of drug shortages, and call for government intervention to address this growing public health crisis.

“Typically we only get one chance to cure disease. If that opportunity is missed, it is rare we are able to cure childhood cancer,” says. Dr. Unguru. “Direct consequences of drug shortages include increased medication errors, delayed administration of life-saving therapy, inferior outcomes, and patient deaths.”

“At the height of the shortages, a survey of medical oncologists found that a staggering 83% of oncologists weren’t able to prescribe their preferred chemotherapy agent. More than 75% had to make a major change in treatment such as choosing a different treatment regimen or substitute different drugs during the treatment. And over 40% had to delay the start of treatment. Two surveys of childhood cancer specialists, in 2015 and in 2017 , found that two out of three pediatric oncologists reported that their patients’ clinical care was compromised by the shortages.”

Dr. Unguru and his co-authors argue that the U.S., like many other countries already have, should establish an essential medicines list. As defined by the WHO, essential medicines satisfy the priority health care needs of the population. Medicines included in the essential medicines listare both clinically effective and cost effective and are to be available within the context of functioning health systems at all times in adequate amounts and dosage forms, with assured quality and at an affordable price.The current WHO Essential Medicines List for Children includes 18 chemotherapy agents and 4 supportive care medicines.

“It may shock you to hear, but over the past 2.5 years, nearly two-thirds of these essential medicines for children with cancer have been or are currently in short supply in the U.S.  In fact, at this time, 5 of the 18 essential medicines, nearly 30%, are in short supply in the U.S.,” said Dr. Unguru.

Dr. Unguru is a pediatric hematologist/oncologist with joint faculty appointments at The Herman and Walter Samuelson Children’s Hospital at Sinai and The Johns Hopkins Berman Institute of Bioethics, where he is a Core Faculty member. He is also an Assistant Professor in the Johns Hopkins School of Medicine. Dr. Unguru is a member of the Children’s Oncology Group, and leads a multidisciplinary, transnational working group examining the ethical and policy implications of chemotherapy shortages in childhood cancer.

Addressing Challenges of Children with Medical Complexity

Drs. Renee Boss and Rebecca Seltzer, faculty members at the Berman Institute of Bioethics, hosted the Robert H. Levi Leadership Symposium, “Where can they live? The Ethical Challenges of Gaps in Community Supports, Services, and Placement Options for Children with Medical Complexity,” on February 4-5. While children with medical complexity and their families interact with multiple systems of care as they navigate complex medical and social needs, these systems tend to work in silos. The Levi Symposium offered a unique opportunity to bridge those gaps.

Leaders from across the various systems of care in Maryland that serve this population of children (i.e., healthcare, social services, Medicaid, Maryland Department of Health, case management, policy, law, advocacy) collaborated with with parents and national experts in policy, research, and clinical care of children with medical complexity (CMC). This 2-day symposium included a publically attended panel discussion, followed by an all-day invite-only working group.

For more information about the symposium and to learn more about the invited guests and progress, please visit the symposium website.

Approximately 100 guests attended the first event of the symposium, a public panel discussion titled “Defining ‘Good Outcomes’ for Children, Families, and Systems of Care in the Context of Pediatric Medical Complexity.” Panelists included:

  • Marisa Berry, a parent of a child with medical complexity;
  • Margaret Moon, MD, MPH, the Chief Medical Officer of Johns Hopkins Children’s Center;
  • Debbie Marini, MSW, LCSW-C, Director of Placement and Permanency at the Social Services Administration (SSA) of the Maryland Department of Human Services (MDHS);
  • Rebecca Jones Gaston, MSW, the Executive Director of the SSA at MDHS;
  • Chris Feudtner, MD, PhD, MPH, an ethicist and complex care/palliative care physician at the Children’s Hospital of Philadelphia.

This diverse panel of speakers offered their unique perspectives on this topic, followed by an engaging Q+A discussion session with the audience. The panelists’ commentary and subsequent discussion regarding what defines “good” outcomes in this context helped set the stage and clarify objectives for the next day’s working group agenda.

During the full-day meeting, working group members came together to discuss what policies and practices exist (or are lacking) in Maryland to address the needs of CMC, especially as they relate to placements, supports, and services. They heard the perspectives of stakeholders across systems/agencies in Maryland, listened to parents share their stories of caring for a child with complex medical needs, learned from national experts about what is happening in other states, and brainstormed where to prioritize collaborative efforts to address the unmet needs of this population.

Improving access to high quality data, especially linked across systems, was highlighted as an important step to better understanding and tracking this population. One goal is to develop a cross-sector complex care consortium in Maryland to share data and work together to inform clinical, placement, and policy innovations.

The Levi Symposium sparked important cross-sector dialogue about caring for children with medical complexity and connected key stakeholders in the state of Maryland and beyond. Moving forward, invited guests will continue to collaborate in research, advocacy, and practice to enhance systems of care for children with medical complexity. Knowledge and perspectives gained through this symposium will be disseminated through scholarly publications.

Apply: Genomics & Society Mentorship Program

Summer Internship Dates: May 26 – August 3, 2019

Application Deadline: Early February, 2019.
Applicants will be informed of their status by March 1.

6 slots available for Summer 2019 cohort

Open to undergraduate students interested in the ethics of research, clinical care and/or public health, the Johns Hopkins Genomics and Society Mentorship Program begins with a 10-week Summer Internship Program (SIP) through the Johns Hopkins School of Medicine. The Johns Hopkins SIP provides summer research experience to underrepresented minorities, students from economically disadvantaged and underserved backgrounds, and students with disabilities. Through the Mentorship Program, these students will gain experience doing research centered on ethical, legal and social implications (ELSI) of genomics.

Visit the Program webpage for more information and to apply.

Ethics for Lunch

This monthly conference series at Johns Hopkins Hospital attracts 60-70 attendees to each session from the entire hospital community – physicians, nurses, medical students, social workers, chaplains, etc. – to participate in discussion about an important clinical ethics issue.

2018-19 Panels (Upcoming)

Tuesday, June 18
Looking Back and Looking Forward 2019

Noon-1:15 p.m.
Wilmer Eye Center, Patz Lecture Hall (note change in usual location)

2018-19 Panels (Complete)

Tuesday, May 21
When Patients Refuse Aspects of Care that Affects Overall Treatment Plan

Tuesday, April 16
26th Annual Shallenberger Lecture
“Beyond Charity: Re-Imagined Communities”
James Corbett, M.Div., J.D.
Principal, Initium Health

Tuesday, March 19
Informed Consent: When Patients Change Their Minds

 

Tuesday, Feb. 19
Ethical Challenges Associated with Enrolling Families in Genetic/Genomic Research

Tuesday, Jan. 15, 2019
Ethical decision-making for patients with substance use disorders requiring repeat cardiac valve replacement surgery

Issues of Distrust Around Neurological Death, Organ Donation and the Role of Spiritual Care
Tuesday, December 18, 2018

 

Breastfeeding for US Women with HIV – A Medical and Ethical Analysis
Tuesday, November 20, 2018

(Video not available at panelist’s request)

 

Ethics and the Care of Transgender Patients – Justice / Harm / Respect
Tuesday, October 16, 2018

Ethics for Lunch: The Intersection of Decision-Making Capacity and Mental Illness
Sept 18, 2018