Saturday morning in the clinic.
Galbraith, Kyle L.
Perry, Joshua E.
|Publication:||Name: The Hastings Center Report Publisher: Hastings Center Audience: Academic; Professional Format: Magazine/Journal Subject: Biological sciences; Health Copyright: COPYRIGHT 2009 Hastings Center ISSN: 0093-0334|
|Issue:||Date: Sept-Oct, 2009 Source Volume: 39 Source Issue: 5|
|Topic:||Event Code: 290 Public affairs Advertising Code: 91 Ethics|
|Product:||SIC Code: 8742 Management consulting services; 8748 Business consulting, not elsewhere classified|
A decade ago Mark Bliton and Stuart Finder suggested that clinical
ethics consultants be "persistently guided" by the question
"What do I need to know?" (1) Exploration of this question,
they argued, is critical for two reasons. First, it helps consultants to
figure out why the ethics consultation was requested in the first place,
as well as to understand the details of the situation. Secondly, the
conversation it prompts with the primary participants--patient, family,
physicians, nurses--is the only way to elicit what they find
"troubling and in need of resolution, and therefore what aftermaths
they can live with in the light of what is most worthwhile to, and for,
Relatively novice at the practice of clinical ethics consultation, we are a junior faculty member tracking toward tenure and a graduate student/ethics fellow training in the practice of ethics consultations and moving toward completion of a dissertation. In addition to our various other medical school obligations, we regularly carry the ethics pager, and when called--usually by a nurse or a resident--we come, oriented each time by this primary question: What do we need to know?
This was our first thought when our pager started beeping around 7:30 on a recent Saturday morning. The surgical resident requesting an ethics consultation needed "ethics help" on the case of Mrs. K, a seventy-one-year-old woman who had been in the surgical intensive care unit for eleven days following treatment for a small bowel obstruction. Throughout her hospital stay, Mrs. K had told various members of her care team that she would "rather die than have a colostomy bag." During the early hours of this Saturday morning, Mrs. K had become septic and unconscious due to the presumed rupture of her small bowel. The resident told us that she required surgery on her previously resected intestine, likely resulting in an ostomy, to save her life. He indicated his desire to respect Mrs. K's stated wishes by not performing the surgery, but he thought he should first consult the ethics service, since failure to operate would result in the patient's death. We agreed to meet him in the ICU as soon as possible and also urged him to contact Mrs. K's husband--and surrogate decision-maker--to update him on his wife's status.
Trained in law and religion and philosophy, neither of us ever feels completely comfortable in the environment of the medical clinic. It is a foreign land, marked by strange, loud noises and permeated by a harried pace. To those untrained in medicine and unfamiliar with the daily contours of such an intense place, this landscape can be disorienting.
We arrived on the scene about an hour after being paged, and we immediately noticed Mr. K's numbed expression as he sat at his wife's bedside, elbows on his knees, his hands propping up his disheveled head. He had arrived in the ICU about thirty minutes before us, and during the intervening time, the attending surgeon had explained the urgency of Mrs. K's compromised status. We were told by the resident who had paged us that the attending surgeon had presented Mr. K with a consent form for his wife's surgery, and that Mr. K had signed it. As we attempted to get our bearings, preparations for Mrs. K's surgery were already underway.
During our earlier conversation with the surgical resident, he had been clear about his understanding of Mrs. K's unequivocal desire to decline any surgery that would result in an ostomy. The preparation for surgery thus struck us as odd, so we approached Mr. K to learn more about the decision he had just made on his wife's behalf. He said quite plainly that he knew his wife would be "mad" at him once she awoke from surgery, and in fact, he believed that upon waking she would immediately "rip the bag off" herself. Married for fifty-seven years, he knew his wife's wishes, but he said the surgeon had told him that colostomies are sometimes reversible. His understanding was that Mrs. K would need "the bag" for only "a few days."
This comment was unsettling to us. During our telephone conversation with the resident, nothing had been said about a short-term ostomy. And so we left Mr. K at his wife's bedside, amidst all the beeping noises and frantic nurses making rapid preparations for emergency surgery, in order to speak directly with the attending surgeon.
His perspective was clear. Mrs. K's emergent situation required a relatively simple medical intervention. Years could be added to her life, but only if the surgeons acted quickly. Her necrotic bowel demanded immediate attention, and the surgery team needed consent to operate. Sensing that the attending surgeon was not amenable to a lengthy conversation with the ethics consultants, we asked only one follow-up question: How long would Mrs. K likely have to endure the ostomy? In response, the attending surgeon confidently estimated that given her extensive history of medical problems (multiple heart surgeries, chronic renal failure, prior colon resection), ostomy reversal would be unlikely for at least a year. Moreover, given her advanced age and poor health, she very well might live the rest of her life with "the bag."
Following this, we never did find an opportunity (or the courage) to inquire of the attending surgeon what he had said that so warped Mr. K's understanding of his wife's situation. We regret not speaking further with him about this, and about why he had presented Mr. K with a consent form for his wife's surgery. His actions provided an educational moment for all of us, but by not probing his reasons, perhaps we, the ethics team, failed. In the months since this case, we have found ourselves reflecting on why we were called and what the care team expected of us, and on the authority bestowed upon us by both the physicians and Mr. K. We should have pressed members of the health care team further on these points in particular.
Now, we can only speculate on what might have happened. Perhaps Mr. K had heard "a few days" because that was what he needed to hear in order to muster the courage to authorize a decision that he feared his wife would not have agreed with. Perhaps he had heard "a few days" because nothing in the ICU setting suggests that it is ever appropriate not to perform a relatively routine medical procedure, especially when the result will be the death of the patient. Of course, we trained clinical ethicists know that the legal and philosophical principles of self-determination and informed consent give an adult with the capacity to make medical decisions the right to decline intestinal surgery on a necrotic bowel, even if that decision hastens her death. But Mrs. K was unconscious, and the decision had to be made on her behalf by someone who had spent the last six decades of his life as her companion. This was a textbook case of surrogate decision-making under extreme duress.
Adding to the tension on that Saturday morning in the ICU was the complexity that always emerges from the interplay of each participant's subjective lens of life experience. Highlighting the relevance of perspective, a twenty-something nurse who had been caring for Mrs. K for a week whispered to us at one point, "It's just a colostomy. She'll die without it. Wouldn't she rather live?" The nurse's candor spoke volumes about the importance of carefully considering the specific facts in every clinical encounter. If Mrs K had been a younger, relatively healthy individual whose recovery would likely be faster and whose time spent with a reversible ostomy shorter, the lifesaving surgery would probably have been insisted upon by the surgical team, even in the face of her previous comments regarding it. Indeed, one trained to wield a hammer is quite naturally inclined to hit the nail, and if a routine surgical procedure will prevent a patient's death, certainly many would see failure to operate as--well, a failure. And in fairness, when someone can be restored to relatively good health and lifestyle, then a surrogate decision-maker's refusal to consent to a routine, life-prolonging surgery might warrant intense scrutiny by other interested parties--family members, nurses, and ethicists, for example--and might even result in legal action to proceed with the medical intervention. Such is the life-at-all-costs culture of twenty-first century Western medicine.
The facts of Mrs. K's case, however, were much different, and their interpretation far more emotionally complex. Her husband of nearly sixty years had tears in his eyes when he revealed to us later that except for her frequent doctor visits, his wife had not left the house for several years, and that their rural community allowed them to maintain few social ties. Mr. K told us that one of their only remaining friends had worn a colostomy bag for a long time. He elaborated on the "foul smell" that he and Mrs. K had noticed on several occasions, and said he and his wife had both commented to one another that neither of them would ever want to "wear a bag."
Or Not to Consent?
After our brief conversation with the attending surgeon, we promptly returned to Mr. K to clarify his apparent misunderstanding of his wife's prognosis. Beginning to weep, he admitted uncertainty regarding his decision and distress over the realities of the ostomy. He said that if now was the time for his wife to "meet her Maker," then so be it. He then said he wanted to call their adult daughter.
After speaking with his daughter, Mr. K told us that he knew "deep down" that his wife would not want to live with an ostomy, and he wanted to "respect her wishes." Accordingly, he now wished to revoke his consent for his wife's surgery. Knowing that final surgical preparations were being made at that very moment, we--panic-stricken--quickly devised a plan. Kyle would remain with Mr. K while Josh, who had hurriedly dressed in scrubs, searched for a nurse escort to usher him into the operating preparation area to stop the bowel surgery that would extend Mrs. K's life. Once the team knew consent was revoked, surgical preparations ceased immediately, and Mrs. K was returned to her room and made comfortable. By 11:00 a.m., Mr. K and his daughter were with Mrs. K at her bedside. She died two days later due to intra-abdominal sepsis.
When one hears about clinical ethics consultation, often one hears a great deal about "autonomy" or "do no harm" or some other principle canonized by Beauchamp and Childress. If patient autonomy is the esteemed principle that is to be upheld whenever possible, then one might consider this ethics consultation successful to the extent that the patient's desire to forego life with a colostomy bag was honored. We were able to work with Mr. K and his wife's various care providers to ensure that Mrs. K's autonomous choice was respected, even in the face of an attending surgeon who clearly had his own strong feelings about what was best for his patient. We helped to clarify Mr. K's understanding and to bolster his courage, thereby resulting in the preservation of Mrs. K's right to make her own decision and, in some sense, to have the final say on the matter of her care--and the means of her death. Even the surgical resident who placed the original consultation request indicated relief regarding the outcome when we followed up with him several weeks after the episode. He noted genuine concern regarding the "quality of the consent" obtained by the attending surgeon during his conversation with Mr. K prior to our arrival.
However, evaluating this--or any--clinical ethics encounter solely by reducing it to its final outcome or by the extent to which it preserves the principle of autonomy ignores some of its more complex and truly tragic elements. A man on the verge of losing his wife of fifty-seven years was offered the chance to prolong her life by acting against her stated wishes. With that kind of pressure, how could any such situation be deemed successful, even if the eventual outcome preserved the patient's autonomy? Accepting such a loss is a bittersweet "success." Perhaps the best one can say is that resolving this case so its participants could move past it was the only way to render it slightly less tragic. And yet we must not forget that the central figure in this case neither actively participated in the final decision nor lived to move past it.
Without our inquiries into this situation, we are convinced that Mr. K's understanding regarding the implications of his consent to his wife's surgery would not have been probed, their daughter would not have been contacted, and Mrs. K would have awakened to find the (probably) permanent "bag" she had so adamantly refused for many previous difficult years of homebound illness. We believe that despite the probable prolongation of life, neither Mr. nor Mrs. K would have lived well with the decision to operate, nor would the resident surgeon who initiated the consultation. Despite the difficulty in determining metrics for whether our ethics consultations are successful, we can occasionally look back and imagine ways in which the absence of our work might have yielded a greater failure.
Writing about the process of moral discernment within the context of clinical ethics consultation, Richard Zaner--who mentored Bliton and Finder for many years--noted that each case "consists of the emotion, actions, and efforts of the individuals whose 'case' it is," and as such "presents multiple issues, not only during the course of a case, but also simultaneously, e.g. between patients and physicians, between physicians and institutions, family etc. Moral discernment, therefore, like clinical assessment and ongoing diagnostic procedures, requires continual alertness to conditions and circumstances (of all sorts) which change in various ways partly due to determinations and decisions being continually made during its course." (2)
In the case of Mrs. K, we found that our engagement in moral discernment was well served by our being continually alert to the changing conditions and circumstances of that Saturday morning in the clinic, particularly as we became participants in them. To remain alert to these fluctuations in the contours of one's moral discernment, we are convinced that space and time must always be made for that guiding question: What do we need to know? As this one encounter illustrates, this critically self-reflective orientation to clinical ethics consultation enables one to discover and probe those subliminal issues that too often remain below the threshold of our immediate awareness but nonetheless demand our attention.
Moreover, it allows one the space to remember that we are invited to intervene in this clinical space so that we might be, in some sense, helpful--and not necessarily because we bring with us all the "right" answers. Such an approach to the clinical ethics encounter requires particularity and care with the individual persons and circumstances at hand. As such, the approach to clinical ethics consultations that we are endorsing requires more than mere reference to past experiences or recourse to theoretical frameworks. The work of the ethicist in the clinic, we believe, must be characterized by intentionality and reflection. Ultimately we must be guided by a holistic openness that seeks "at once to understand and be understanding" of the particularities that the ethicist needs to discover in that moment in order to find out what he or she needs to know. (3)
(1.) M.J. Bliton and S.G. Finder, "Strange, But Not Stranger: The Peculiar Visage of Philosophy in Clinical Ethics Consultation," Human Studies 22 (1999): 69-97, at 75.
(2.) R. Zaner, "Is 'Ethicist' Anything to Call a Philosopher?" Human Studies 7 (1984): 71-90, at 80-81.
(3.) R. Zaner, "Afterward," Human Studies 22 (1999): 99-116, at 104.
Kyle L. Galbraith and Joshua E. Perry, "Saturday Morning in the Clinic," Hastings Center Report 39, no. 5 (2009): 24-26.
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