As advances in life-extending and lifesaving technologies open new possibilities for patient care, they also make the practice of medicine more complicated and raise difficult ethical issues. UCLA is at the forefront of efforts to ensure that healthcare professionals are properly trained to address these ethical quandaries in the clinical setting.
A modern hospital is a technological marvel. In the developed world, patients have access to vaccines that have vanquished diseases and tempered epidemics, surgical techniques and devices capable of giving new life to the dying and machines and drug therapies that can extend the lives of the ailing for years longer than was imaginable even 50 years ago. In the U.S., these technological advances have helped stretch the average lifespan by more than 10 percent since 1970.
But with every advance, it seems, comes an ethical shadow — a cost or effect that reminds us that where technology is concerned, its use is rarely an unequivocal good. The use of lifesaving drugs and vaccines, for example, may run afoul of a patient’s beliefs or be too costly to be given to all who need them. The limited availability of organs for transplant may raise questions about which patients are most appropriate to receive them. And end-of-life treatments risk extending biological existence at the expense of quality-of-life, prolonging the dying process while offering little hope of recovery.
Such issues occupy thorny ethical territory and have complicated the practice of medicine for all involved in the healthcare system. When difficult decisions need to be made about patient care, clinicians, patients and families can struggle to reach a consensus when the “right” thing to do is not clear-cut and is colored by personal belief. Within this uncharted terrain, a field that has been attracting increasing attention has arisen: clinical ethics. While clinical ethics itself is not a new discipline, a new professional practice has arisen, that of the clinical ethicist or ethics consultant. Its practitioners help healthcare workers, patients and families frame ethical issues and reflect on the implications of decisions made at the bedside and mediate when ethical dilemmas create seemingly intractable disagreements. At UCLA, ethics consultation is provided by the UCLA Health Ethics Center, which was founded in 2002.
“We are called into a situation when one of the stakeholders in the doctor-patient relationship is unsure what the right thing to do is from a moral perspective in a particular situation,” explains James Hynds, PhD, senior clinical ethicist and director of the center’s Arny and Anne Porath Clinical Ethics Fellowship. “In cases where there are value-laden clinical decisions to be made, our job is to facilitate respectful dialogue — to help individuals find their moral voice and to help people listen respectfully to the moral voice of others.”
In a sense, clinical ethicists are stewards to the human side of medical practice. Amid the mechanical and the automated, they attend to the metaphysical and personal. But finding the most humane course of action, where technology is concerned, can be more complicated than would first appear. While seemingly cold, unnatural or artificial in nature, technology, in the medical setting, also carries with it hope and possibility, appealing to our humanistic instincts.
It is this duality that often is the source of conflict, as physicians and their patients must constantly consider how, if and when the use of these burgeoning technologies actually enhances medicine or undermines it. “There exists the possibility that technology, used for less than truly human ends, may actually threaten the fundamental goal of medicine, which always has been to heal or cure the sick, so that they can go on living the rich, fulfilling, flourishing life that we all want,” Dr. Hynds asserts.
In medicine — perhaps most often in situations involving end-of-life care — there comes a point when attempts to cure may inflict more suffering than withholding treatment. It is a dilemma that, Dr. Hynds says, can trap the clinician between his most basic commitment — to “do no harm” — and the desires of the patient or the patient’s family to do everything possible to save that patient’s life.
Such times call for tough decisions on the part of doctors, patients and their families, and all parties may not agree on the “right” course of action. While doctors have the best perspective on prognosis, patients and their families know best the patient’s wishes, needs and limitations. Where clinicians may see the decision to deny treatment as humane, patients and family members might see it as a betrayal. Add to the mix the social implications that may factor into a medical decision — the potential cost of long-term care or the allotment of limited resources — and the ethical complexity and moral weight of each decision can be profound for both sides.
|Dr. James Hynds: “Because the stakes for patients are so high — often life and death — it seems to me a matter of justice that the people who are advising clinicians and advising patients have a high level of professional competence.”
Photo: Ann Johansson
Clinical ethicists are called upon to mediate in such situations — to help both sides recognize the concerns of the other and understand the potential consequences of a difficult choice. It is also the job of the clinical ethicist, Dr. Hynds contends, to help both sides see that the person with whom they disagree is equally invested in doing what is in the patient’s best interest, reminding all involved that reasonable people can disagree and helping the opposing sides reach an understanding and personal peace, if not an agreement.
“Because the stakes for patients are so high — often life and death — it seems to me a matter of justice that the people who are advising clinicians and advising patients have a high level of professional competence,” Dr. Hynds says. “Patients and their families have a legitimate expectation that a clinical ethicist will be professionally trained, just as they expect their nurse or medical clinician is professionally trained.”
WHEN PHYSICIANS AND NURSES ARE PUT THROUGH THEIR PACES during their professional training, there is a defined set of standards they must meet before they are deemed ready to handle cases in the clinic — completing an accredited academic program, passing licensure exams and spending years gaining practical experience by shadowing experts in their fields before taking on cases themselves.
But compared to the ancient practice of medicine, the field of clinical ethics consultation is still relatively recent, and it has yet to establish robust requirements regarding the expertise and training of those entering its ranks. Moreover, in this still-nascent field, it remains unclear what, exactly, that training should be.
“When employers are looking to hire someone with a clinical-ethics skill set, they don’t really have a full understanding of the scope and the nature of the work,” says Bruce White, DO, JD, director of the Alden March Bioethics Institute at Albany Medical College in Albany, New York. “It would be easier to hire qualified individuals if it were clear what skill set they should have and if there were ways to validate whether or not candidates truly possessed that skill set.”
This vocational ambiguity has prompted many in the field to call for formalized standards for the education and training of clinical ethicists. “Many of us would like to see the accreditation of programs that train clinical-ethics consultants. It is important for the discipline to recognize that having a degree in a related field, along with an interest in helping people, is not enough. There needs to be a clearer delineation or definition of what a clinical ethicist should be,” Dr. White says.
|Dr. Clarence H. Braddock III: “You can have a conversation about a particularly gnarly ethical dilemma and talk about how you might handle a situation, but turning that into practice ... takes a separate set of skills that is not necessarily addressed yet by medical education.”
Photo: Paul Babin
In 1998, the American Society for Bioethics and the Humanities outlined a set of “core competencies” for clinical ethicists, but there are no mechanisms currently in place to evaluate whether or not someone who claims to have those core competencies truly possesses them. Those charged with overseeing clinical ethics in U.S. hospitals come from a variety of disciplines — medicine, law, theology — often with degrees in bioethics, a field that has grown contemporaneously with clinical ethics to address many of the same complex ethical issues. Few, however, come to the field with any practical experience dealing with ethical issues at the bedside.
UCLA’S ETHICS CENTER IS AMONG THE VANGUARD OF INSTITUTIONS that have established fellowship programs to provide those trained in bioethics with experience in the clinical setting. The directors of these programs — Drs. Hynds and White among them — constitute an informal network dedicated to the professionalization of their field. Their fellowships are training a new professional generation of expert clinical ethicists, and, in the process, the hope is to define a high set of standards for those entering the discipline for years to come.
Perhaps nowhere are the standards more rigorous than at UCLA’s Ethics Center, where the Arny and Anne Porath Clinical Ethics Fellowship sets high demands for both entrance and completion of its two-year program. Now entering its fifth year, the fellowship has a high bar for admission — only applicants possessing a doctoral degree in ethics are considered — and fellows, once chosen, must complete two intensive years of academic and practical training and pass multiple assessments in order to fulfill their requirements.
While the demands of the fellowship include coursework and the publication of academic papers, practical experience in clinical ethics lies at the heart of the program. Following an apprenticeship model, fellows are mentored by clinical ethics consultants from the UCLA Health Ethics Center, including Dr. Hynds; center director Neil Wenger, MD ’84 (RES ’87, FEL ’89), MPH; and co-director Katherine Brown-Saltzman, RN, MA. The fellows first shadow their mentors as they consult on ethics issues in the hospitals they serve. Then, gradually, fellows are encouraged to take the lead during consultations — under the watchful eye and guidance of the experts.
The goal is to graduate fellows who have gained extensive, real-life experience in a variety of clinical and ethical contexts. Immersed over a two-year stretch in such diverse settings as Ronald Reagan UCLA Medical Center, the Stewart and Lynda Resnick Neuropsychiatric Hospital at UCLA and UCLA Health - Santa Monica Medical Center, fellows are exposed to a wide range of consults in several disciplines, including neonatology, pediatrics, transplant medicine, neurology and psychiatry. Past fellows have come out of the program having engaged in well over 200 consults — a substantial amount of experience that prepares them for a career as a solo ethicist.
This practical training, Dr. Hynds says, is in high demand; UCLA’s program has more than 50 applicants for each fellowship slot that it offers. “We are inundated by people who want to be clinical ethicists, who realize that one can only truly claim expertise — and feel comfortable as an ethicist — if one has practical training from clinical experience,” he says. Though the demand is high, the number of fellowship programs nationwide is relatively small. This is due, in part, to limited-available funding. For its part, UCLA’s ethics fellowship receives much of its support from donors, some of whom provide matches to the funding that UCLA Health provides.
Recent fellow Tyler Gibb, PhD, JD, agrees. “I attended a high-quality graduate program in bioethics, but it was an academic program that did not offer effective clinical experience. I was lucky to secure a fellowship that could bridge the gap,” he says. “Both in terms of the complexity and acuity of the cases and in terms of the intimate mentorship, the training I received at UCLA’s Ethics Center was unparalleled.”
Since completing the fellowship, Dr. Gibb has been appointed assistant professor of medical ethics, humanities & law at Western Michigan University’s Homer Stryker MD School of Medicine in Kalamazoo, Michigan. There, he will serve as an ethics consultant at two local medical centers and will help develop the ethics curriculum for the brand new medical school. Dr. Gibb is evidence that clinical ethics is maturing. He is part of a new generation seeding the field at medical centers across the country. He and other fellows bring with them a cultured view of the discipline that is a product of the mentorship and practical training they received.
“Those of us who go through these fellowships come out the other end not only with sound academic credentials, but also with a commitment to improving the craft of clinical ethics,” he says. “We really are trying to set the bar very high for our profession.”
WHILE HAVING TRAINED CLINICAL ETHICISTS in U.S. health systems is becoming more commonplace, their success still depends, at least in part, on the awareness of healthcare professionals to recognize ethical issues and to call on ethicists for support. To that end, the center has partnered at UCLA with Clarence H. Braddock III, MD, vice dean for education in the David Geffen School of Medicine at UCLA and Maxine and Eugene Rosenfeld Chair in Medical Education, and Neveen El-Farra, MD, interim associate dean for curricular affairs, to design a new clinical-ethics curriculum that will expand the training and exposure medical students have to ethical issues that arise in the clinic.
The curriculum, which Drs. Hynds and Braddock plan to roll out over the next few years, will prepare the next generation of clinicians for the ethical challenges that await them in clinical practice. The intent is to provide students with both theoretical and experience-based coursework from the time they enter medical school through graduation that will prepare them for their post-medical school residency, when they will have primary responsibility for patient care and the ethical quandaries that come with it.
The proposed curriculum will begin with an in-depth and sustained study of the nature and goals of medicine as a moral endeavor. Thereafter, a mainly case-based model will be employed to expose first- and second-year students who are not yet in the clinic to the foundational principles that guide ethical decision-making in medicine. Derived from elective seminars Drs. Hynds and Braddock have led in recent years, the courses will be taught through the lens of fictionalized cases based on real situations encountered by the consultants at the UCLA Health Ethics Center. The approach allows for lively discussion of ethical issues and introduces an analytical framework students can use to work through the moral morass.
WHY I GIVE
Recognizing a need for service and an opportunity to clinically train future ethicists, Arny Porath established the UCLA Arny and Anne Porath Clinical Ethics Fellowship Program in 2011. Since its inception, the program has provided nearly 1,000 consultations to patients, families and clinicians at UCLA, and UCLA-trained ethicists have gone on to provide services across the country.
“Clinical ethics is the part of healthcare that no one sees, but it is crucial to the continuum of care. My service on the ethics committee opened my eyes to the high volume of complex medical situations that would benefit from ethical consultation. Early and skilled interventions benefit patients and their families. This is what inspired us to establish the fellowship program.”
– Arny Porath
When students move on to their final years of training, during which they work as part of a healthcare team conducting clinical rounds, real-life situations they encounter will be integrated into the curriculum. Sessions will allow the students to debrief and make sense of ethical dilemmas they encountered on their rounds and the role they played in their resolution.
Dr. Braddock, who specializes in medical ethics and doctor-patient communication, says the experience will be a unique opportunity for students to resolve the sometimes dissonant realities of theory and practice. “You can have a conversation about a particularly gnarly ethical dilemma and talk about how you might handle a situation, but turning that into practice — having difficult or emotional conversations with patients or families or resolving conflict among parties — takes a separate set of skills that is not necessarily addressed yet by medical education,” he says.
But helping students recognize and analyze ethical issues is not enough. Dr. Braddock says that the curriculum also must address the unique position of the medical student in the ethical context of the clinic. “Because our students get exposure to ethical issues during their education, one of the interesting things that happens when they first land on the hospital ward or in the clinic is that they recognize these issues, while others don’t seem to or don’t share the same level of concern,” Dr. Braddock says.
In 1993, Dr. Dimitri Christakis and Dr. Chris Feudtner — then students at the University of Pennsylvania School of Medicine in Philadelphia, Pennsylvania — reported on the phenomenon in the Academic Medicine article “Ethics in a Short White Coat.” They found that when students first entered the clinical setting, they frequently encountered what they considered ethical dilemmas but that almost no one talked about them. These students came to believe that either they were wrong about the issue or that the ethical issue was, in fact, not really there.
There’s inherent danger for students in this disconnect, Dr. Braddock says. Students risk losing whatever insight or sensitivity they may have gained in their ethical training by virtue of enculturation into a medical system that seems to dismiss their ethical concerns. He and Dr. Hynds hope that the new curriculum will help empower students to feel confident raising questions about ethics in the clinical setting and to understand that their voice and perspective serve an important role that is of value to their medical team.
The pair intends to introduce the new curriculum first as a set of electives that will be the prototype for a series of courses and activities that they hope will be integrated into the required curriculum in the coming years. Such a curriculum would be at the forefront of medical education in terms of preparing students for the ethical aspects of the next phase of their clinical training.
The goal, Dr. Hynds says, is far-reaching: “We would like for all students to emerge from medical school with a solid theoretical and practical foundation in clinical ethics, having learned from in-depth critical reflection on real-life cases and real-world practice dealing with these issues in the clinic. Ultimately, the goal is better doctors and better healthcare.”
Veronica Meade-Kelly is a science writer at the Broad Institute of MIT and Harvard.