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Clinical ethicists navigate challenges with evolving biotechnology

March 15, 2017

By BETSY TAYLOR

As science advances the application of biotechnology in patient care, clinicians and administrators may be called upon to consider deep philosophical and theological questions on the nature of life, death and suffering — questions that may be outside of their respective wheelhouses.

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Fr. FitzGerald

That's when Catholic hospitals and systems call in a bioethicist like Fr. Kevin FitzGerald. As a Jesuit with dual doctorates in molecular biology and bioethics, Fr. FitzGerald is an expert in laying out a logical, moral framework for clarifying and discussing questions where the answers may be unknown, or even unknowable.

Fr. FitzGerald holds the Dr. David P. Lauler Chair for Catholic Health Care Ethics at the Edmund D. Pellegrino Center for Clinical Bioethics at Georgetown University Medical Center, where he is a research associate professor in the department of oncology. CHA contracts with the center to make Fr. FitzGerald's expertise available to members of the health ministry.

He spoke with Catholic Health World about some of the common bioethical issues faced by clinical ethicists who work in patient care settings.

Are there similarities in the questions that CHA members ask you related to bioethics?
Yes, CHA members are interested in issues that are raised by advancements in genomic medicine, personalized medicine and stem cell treatments. They want to know how cutting-edge technology is impacting health care, where it might be going. They want to know: what's the church thinking on this?

Some systems have big, general questions. Some ask what the Catholic Church is saying on a particular issue. One system had questions related to some clinical trials it wanted to do. I think everybody is trying to figure out their footing moving forward.

For instance, you've got different health care systems and individual institutions advertising: "We do genomic medicine," or "We do personalized medicine," "We do regenerative medicine." Well, what does that mean? What, in fact, do they do, and what are the ethical issues that are raised, and how are they managing that?

One of the things that I say, not just to CHA institutions, but to all the health care institutions I speak with is: "Look, there's a lot of potential for good here, and that good could be lost if you don't do this right."

If you think back to Jesse Gelsinger — the first person publicly identified as dying in a clinical trial for gene therapy in 1999 — and how that one case really set back genetic treatments and genetic therapies at least 10 years, it wasn't because anybody was being malicious, it was because they were rushing ahead too fast. The potential for benefit from genetic therapies is great. It would be a horrific result if something goes awry because someone wants just to rush ahead and be first.

What qualifies someone to be a clinical ethicist or to become a member of a hospital's ethics committee?
Ethics work attracts a diverse collection of people. You have people with a variety of degrees: Ph.D.s, master's degrees, law degrees, medical doctor and nursing degrees, social work degrees. Clinical ethics consultation certification is an area that's being addressed right now. The American Society for Bioethics and Humanities is looking into what it would take to set up a system for certifying clinical ethicists. At CHA's behest, Georgetown University and the Catholic University of America are investigating the viability of starting a master's and a certification program in Catholic health care ethics.

CHA has found that a significant percentage of ethicists working in Catholic health care are planning to retire, and is developing the program with the universities to meet increased need for ethicists.

Catholic health care has some specific issues that don't necessarily come up in general health care institutions or public health care institutions because we have an additional mission that we pursue, a commitment to Jesus' mission of love and healing. As with all health care institutions, Catholic health care strives to bring the best care and treatments possible to its patients and families. The difference is that Catholic health care institutions do so from the perspective that all human beings deserve such care, from the beginning of their lives to their natural deaths, with particular attention given to those who are most vulnerable and in need.

What are some of the central ethical questions related to biotechnology in health care?
Our technologies are becoming so much more powerful. As one example, clinical ethicists are involved in the challenging process of informed consent for patients, which can be more complex than it used to be. How do you say to a patient: "Your medical information might be used in a research project that may yield new data that refers back to you particularly, and we may not have a good idea of what that data means with regard to your treatment plan?" What if the project shows that some have an elevated risk for a disease, but it's not clear the extent to which this particular person might contract the disease because everyone is unique? That makes it much more complex.

Helping to formulate and respond to these questions, that's part of what ethicists are supposed to be doing. We're trying to be a bridge between where cutting-edge science is, and then how that cutting-edge science ultimately might be applied to provide the best treatments available to different patients.

For instance, we have technology that can genetically sequence any tumor sample. The advantage of that is that now you can take four different patients who have colon cancer and discover that you want to treat each of those colon cancers differently because of the genetic mutations that are involved. At the same time, while tumor typing allows you to refine your approach and target treatments more precisely, you also might come across something you have never seen before. Now what do you do? How do you explain to patients that our power now to get all this additional information does not always lead to clarity? In fact, sometimes it can lead to greater uncertainty.

Is there a common protocol used by Catholic health care facilities when an ethical or bioethical issue arises?
They basically follow a similar approach. The ethicist or ethics committee gathers relevant information. You figure out what the different options are and the possible consequences of those options. You get different perspectives, and then you sit down with the patient, or whomever is making the decision for the patient, and try to truly inform their decision making. They choose among their options, and you continue to communicate with the patient, and loved ones, as their situation changes and as they become more familiar with their personal situation and the challenges before them.

What happens if there's an ethical question where those involved disagree?
It's a constant balancing of the relevant information. If there is gridlock in terms of decision making, sometimes you have to get additional information that might lead to greater clarity or consensus. Some clinical ethicists might say: "It's my job just to gather the information and make sure everyone is talking to one another."

Other clinical ethicists, and I would put myself in this group, say: "The goal is the best treatment plan for the patient." Dedicated, caring, highly trained and intelligent people can sort through the relevant information and issues and in conjunction with the patient and the patient's family to come up with a best treatment.

The thing that I find gratifying about medicine is you can't postpone it. You can't say, "Oh, well, we're all going to agree to disagree." I'm sorry, we can't do that, we've got a patient here, and a decision about the treatment plan has to be made.

 

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