Tuesday, April 20, 2010
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An 85 year old woman with hypertension and ischemic cardiomyopathy presents to the emergency room late one night with severe abdominal pain. She is found to have a large, and leaking, abdominal aortic aneurysm. The on-call vascular surgeon comes in from home in the middle of the night and has a half-hour long conversation with the patient and her children about attempting an operative repair. The surgeon knows the chances of the patient surviving the immediate surgery aren't great, perhaps 60%, and the post-operative period will likely be rocky - days in the ICU, maybe longer, with a good chance of needing mechanical ventilation for that long or longer, not to mention acute kidney injury, need for dialysis, and stroke. The alternative is an almost certain death for the patient within a day or two, although the patient can be made very comfortable. The patient is told all of this, agrees to the procedure, and 3 days later is still ventilated, anuric, and needs CVVH (continuous hemodialysis). Her family at this point asks, insists, that dialysis not be started and the patient be removed from the ventilator and allowed to die comfortably. 'She wouldn't want any of this.' You, the palliative consultant, get the consult call from the SICU (surgery intensive care unit) case manager, because the surgeon is so upset and angry this is happening she couldn't bring herself to call you herself.*
Critical Care Medicine has a fascinating qualitative study about surgeons and end of life care which speaks directly to this, and similar, situation. It's an excellent paper for the teaching file, particularly for fellows who don't have surgical backgrounds (which I assume is most, but thankfully not all, HPM (hospice and palliative medicine fellows these days).
The paper presents a small qualitative study of 10 physicians (mostly surgeons; a few non-surgeons who do extensive work in SICUs) at two institutions who participate in high-risk procedures, and involves extensive open-ended interviews about end of life care post-operatively, and attitudes towards advance directives, based on specialty specific cases presented to the surgeons (cases which present similar scenarios as far as I can tell to the one I described above). A grounded theory approach was used to establish and describe the themes that emerge. Most of the paper simply describes those themes.
The major theme they identify is described as such:
Respondents described a complicated relationship involving negotiation with patients who require high-risk surgical procedures. According to physicians, this interaction creates an informal contract between the surgeon and patient in which the patient not only consents to the operative procedure, but commits to the postoperative surgical care anticipated by the surgeon. We have named this implicitly understood contract “surgical buy-in.”What they describe is that the surgeons either feel an implicit contract exists between the patient and the surgeon that if the surgeon is going to attempt this risky procedure, and that the patient consents to this, that they are consenting to (what generally seems to be an ill-defined) post-operative period in which essentially the surgeon decides what is necessary and appropriate care/treatments. While not actually stated in the paper, my sense is that there is an affinity between the reality that intraoperatively the surgeon has tremendous latitude in deciding how to proceed to make the surgery successful (you don't consent the patient mid-operation about whether or not to ligate the hypogastric artery), and the latitude they feel is necessary to ensure the success of the post-operative period. It's a 'package deal' (this language is used by a subject).
The surgeons described that part of the informed consent process for the surgery involves this, although it seems that at times this is frequently implicit (my sense here is that the expectation is that if the surgeon describes what could happen post-operatively and the patient still agrees to the procedure, then there is an implicit consent/agreement to all the post-operative care that the surgeon feels is necessary to keep the patient alive). The length of time needed post-operatively also does not seem to be explicitly defined by the surgeons in this process (which seems very understandable to an extent - the distinction between 7 days and 8, or 14 and 21, are arbitrary and in reality are patient-specific, and dependent on what actual complications occur, etc. etc.).
They also describe the surgeons' description of grief, guilt, frustration, and culpability when these events happen. There is a distinct sense of betrayal as well - that the surgeon told the patient this could happen, the patient agreed to take the risks, and when things don't go well immediately, the patient (or family) wants to stop, even when the surgeon thinks there is a chance s/he could pull the patient through. A key quote:
Respondents described situations in which requests for limiting postoperative care were denied. Surgeons' rationale for this course was based on the patient's potential for recovery: “For example, you know some people get pneumonia, but 90% are able to get through it and get off the ventilator and . . . that is sort of a bump in the road to that, and from my point of view you have to be willing to endure that on some level if we think you are recoverable.” Surgeons noted that this approach was paternalistic and even might be contrary to wishes expressed in the patient's AD but felt that the patient's potential for recovery as well as the preoperative negotiation permitted the continuation of aggressive support.
In my experiences with these situations the sense of betrayal and self-doubt are very acute for the surgeons. Colleagues have described to me acute feelings of causing harm to a patient: putting them through a major procedure and the post-operative care, for 'nothing,' when they could have just made the patient comfortable in the first place (for emergent procedures) or at least avoided the pain, cost, and human effort of an elective procedure. If they had known the post-op care would have been unacceptable to the patient they wouldn't have done the procedure in the first place - these were surgeons who were comfortable with their patients declining life-saving operations (they enact appropriate symptom-directed treatment and call the palliative care team) - and didn't feel like they were pressuring their patients into operations, or hiding from them what the post-operative course could involve.
I think it's a very different perspective from what our patients/families feel in these situations (I'm speaking here about personal experience as a palliative consultant, so I should acknowledge that I'm describing a self-selected group of patients/families). Most of the time I've witnessed these events the patients/families are grateful: they knew it was a long-shot, the doctors gave it their best shot, Mom knew there was a chance this would happen but was hoping it wouldn't, and it's ok that it didn't work out, now please can you make sure that Mom doesn't get a tracheostomy? The 'problem' per se is not that the patient didn't know the risks, it was that they agreed to the surgery hoping none of that would happen. And, yes now I'm introducing a boxing metaphor, the idea of going 'one or two rounds' then throwing in the towel is just plain fine with the patient/family. It is of course not fine with the surgeon, who thought the patient was agreeing to a lot more, and may not have decided to proceed with the operation in the first place knowing that there was a 2 round limit.
It's a very different perspective than what we (and I'm not completely sure how I'd define what I mean by 'we' there - internists, family docs, palliative clinicians, etc.) bring to end of life situations. Patient gets pneumonia and respiratory failure, wants to be full code and agrees to ICU level care, goes to the unit, gets intubated, and 10 days later when he can't be weaned from the vent, the patient or family says 'no he'd never want this, he wouldn't want a tracheostomy or gastrostomy tube, unhook him and make him comfortable.' Generally most of us are just fine with this, we feel we did our best, patient didn't get any better, trach/PEGs suck, and even if there's a chance he'll live he has the right to say no to this. It is very different for surgical patients, perhaps because what happens is a consequence of the surgery (at least from one perspective). In addition, I think this is due to a sense of deep personal responsibility that most non-surgeons don't have, and can't have (although as I've been thinking about this since reading the paper I wonder if there are similarities here with stem cell transplanters/BMT docs).
I have a distinct memory of one of my attendings, early on in my palliative fellowship, talking with me about surgeons. Those of us who didn't go through surgical training tend to think of surgeons as some sort of different species of physician: there's a stereotype of the egotistical, cowboy-hero surgeon who'll never give up, is unrealistic about 'his' patients' chances of living through the surgery and recovery, etc. (Obviously not everyone feels this way about surgeons, but I certainly went through my residency internalizing some similar caricature of my surgical colleagues). My attending told me something like 'Surgeons have a bond with their patients that is much stronger than internists. If you cut someone open, it changes your relationship with the patient in a way that internists just don't have.' I thought to myself at the time that that was really weird. Surgeons are cold heartless scapel jockeys - how could they have a bond deeper than my patient-centered, humanistic, whole-person approach? Well like a good fellow I remembered what he said, and slowly came to realize he was right.
Ignoring any argument about whether this bond/relationship is any qualitatively 'deeper' or 'better', or if this applies to all surgeons etc. (because clearly the humanistic patient-centered approach doesn't apply to all non-surgeons), let's just agree that it is different and different in a way that's important to understand, and appreciate, and respect in our role as palliative consultants. I think I entered palliative care training not understanding, and certainly not respecting, my surgical colleagues' different set of challenges, passions, and boundary issues, and I've come over the years to enjoy working with surgeons really more than any other specialty that consults me. The 'challenges' and 'boundary issues' can be pretty intense, but they're at least more interesting than internist X not wanting to tell patient Y that their end-stage-dyspnea at rest-20m 6 minute walk test-COPD is a terminal illness because it might make the patient cry and how can you be sure anyway?
I've probably broken some blog etiquette by writing a post this long, so I'm not going to talk about how these situations can be prevented (or if they can be; part of me doubts they can, at least for emergent procedures), or how one walks the thin line as a consultant in these situations (advocating for a patient, but also responding to a devastated, or disappointed, or angry colleague) - please feel free to discuss this in the comments.
*This is not a description of a real case I've encountered, although I've seen variations of these events frequently, but a narration of a case similar to what it sounds like they presented in this study.
While I'm disclosing things, I should probably mention that I work with 2 of the authors of this study, and for sure know at least one subject (who told me as much).
Schwarze, M., Bradley, C., and Brasel, K. (2010). Surgical “buy-in”: The contractual relationship between surgeons and patients that influences decisions regarding life-supporting therapy* Critical Care Medicine, 38 (3), 843-848 DOI: 10.1097/CCM.0b013e3181cc466b