Bioethics consultation services like ours are an endangered enterprise. For one thing, there is no apparent business case. Physicians, nurses, social workers and others spend professional time at this work without an off-setting revenue stream. Yes, it is true that at least some consultations result in "foregoing life-extending treatment." (This issue is so common in the field that it gets its own acronym - FLET). And FLET, in turn, reduces cost, thereby improving margin. On the other hand, nothing imperils the legitimacy of an ethics service more profoundly than equating its success with savings to the healthcare delivery system. Additionally, a contingent of respected physician leaders going back over the last 30 years have expressed suspicion of ethics services, opining privately - and sometimes publicly - that Bioethics isn't necessary, or shouldn't be, "if physicians would just act ethically."
This shouldn't come as a surprise. Indeed, the whole field of Bioethics emerged as a backlash against technological Medicine and the prevailing mid-20th century view that doctors are the most qualified arbiters of what treatment is "right" for the patient - even for value-laden choices with profound consequences. What followed might have been an era of shared decision making that recognized the physician as the expert in what could be done, based on the best medical science, and the patient as the expert in what should be done, based on her personal values and preferences. What followed instead, to some degree, has been a simmering antagonism between health professionals, patients and families over the authority to decide, and as a corollary, objection to "outsiders" (i.e. the Ethics consultants) insinuating themselves into the doctor-patient relationship.
And Now the Good News...
The December meeting of our Bioethics Committee was so well attended that we had to have more handouts made - twice. The agenda was so full that we needed to prioritize. And the conversation was so energetic (and diverse and thoughtful) that, as chair, I had two problems - how to keep the meeting from segueing from Robert's Rules to something more closely resembling conversation at a large Holiday dinner...and getting a motion to adjourn at the end of our scheduled hour with dialogue among physicians, administrators, a clergyman, a nurse and a social worker going full tilt. There was something else special about the meeting - more members of our Board of Directors attended this meeting than ever before in its history. (There were four in all, including the Chairman of the Board.)
The question is why? Why this interest, this engagement and the sense that this is vitally important work? Notwithstanding the observation of one member, that Bioethics Committees should be in the business of working themselves out of a job" [by educating and inculcating ethical principles at the bedside], moral distress among caregivers remains an urgent issue. Failures of communication and trust between families and doctors still happen. And deciding whether an intervention is extending life or prolonging death remains an everyday challenge. As a trustee so aptly noted, "you should really call this the Snowflake committee, because every case is unique."
How We Got Here
On a personal note, my own discovery of Bioethics began as an undergraduate at Georgetown University in the 1970's and closely paralleled the development of the field as a whole. At that time, this was a new term for a still-new field, and a course on the topic was offered in the Philosophy Department by a junior faculty member named Tom Beauchamp (pronounced in the Southern and decidedly un-French way: BEE - champ).
Among the luminaries writing at the time was Dr. Edmund Pelligrino, an internist whose views on the matter proceeded from his Roman Catholicism and from a philosophy of Medicine grounded in the set of obligations that bind doctor and patient. Warren Reich, over at the new Kennedy Institute, a GU affiliated program, was working on an Encyclopedia of Bioethics. As it would happen, my own professor had recently written - together with James Childress - the authoritative textbook for the field highlighting their own intellectual infrastructure for a clinical Bioethics that we now rely on to such a degree that many of my colleagues likely believe it was handed down from the ancients.
Along the way, someone gave Beauchamp's approach a proper name: Principlism.
This is the idea, in brief. Ethical conflicts in the hospital can best be understood in terms of four principles; hence the name. One of these is respect for Autonomy, the patient's right to make decisions about his own body. A second principle - nonmaleficence - is to avoid harm. 'Primum non nocere' enjoins and prohibits the physician from doing anything that would cause injury to the patient, and requires him to direct his very best effort to comply with this moral precept. A third principle is closely related; that is, that the physician shall act always in the patient's best interest. Known as "beneficence," this mandate is shared in varying degrees with other learned professions where a fiduciary relationship exists between the professional and the one seeking professional service. Finally, principlists refer to a notion of distributive justice to describe a moral responsibility to apply healthcare resources in a way that is essentially fair and equitable.
A purely principlist account of moral conflict would refract each clinical case through the lens of (often colliding) principles. A physician receives an ambiguous result from a test for cancer, and asks the patient to repeat it. Full disclosure would involve telling the patient that the news may be very bad (or maybe not). Sharing this information would support the patient's right to information about his own health (Autonomy principle). However, providing it would likely distress the patient, while doing nothing to advance his situation (raising considerations of Beneficence and Non-maleficence). Therefore, telling the patient only that a repeat test is needed is an attractive option. Whether this course of action is morally justified requires parsing the strength of arguments on behalf of these conflicting values.Based on our experiences with the Ethics Consultation service, there are at least three other factors that come to bear in many, if not all cases. One is medical information. Good ethics starts with good Medicine. (I have been reminded of this time and again by our committee's only card-carrying PhD Bioethicist, Dr. Robert Cassidy.)
The healthcare team and the family are at loggerheads over the question of PEG (feeding tube) insertion for a patient with advanced Alzheimer's dementia. One side feels the procedure is necessary to "protect" the patient from aspiration pneumonia and malnutrition. The other feels that this is an unnatural invasion at the end of life. It should matter to us to know that studies have found no life extension benefit from this intervention for patients in this end-of-life circumstance.
A second issue is communication. So often, when family members are in conflict with the caregiving team, it is because messaging has been inconsistent or ineffective.
The fact is that our patients tell us about this every month, because we ask them. One whole domain in the federal HCAHPS survey involves physician communication, and one question specifically asks how often doctors "explain things in a way you understand." Month after month, more patients say that doctors treat them "with courtesy and respect" than answer positively to the question on clear communication. We mean well.
Finally, there is a question of understanding. When patients or families are in conflict with caregivers, there is, by and large, a reason. It is our obligation to find out what it is. But this takes time, something that is in chronically short supply in the modern hospital. Nonetheless, getting the right medical facts, ensuring clear communication and being curious enough about the patient and family and their values and preferences and motivations - all of this is part of our job and necessary to obtaining the best outcomes for those who come to us for care.
I titled this blog entry with a question: "Where next" for Bioethics? But I have taken up enough space for now. Lets return to this in 2018. Best wishes to all for a fulfilling, meaningful, ethical New Year!
