Somehow I don't envision being able to get a follow-up appointment scheduled with any of Dad's doctors now, which leads me to wonder: What rights - or responsibility, if any, does a family have after a patient's death, especially when they feel things could/should have been handled differently? And, as an adjunct to this thought process, what responsibility, if any, does a physician (an oncologist, a surgeon, etc.) have to the family after a patient's death?
I like the idea of a "closure" appointment. I think the family would need to be very clear on their goals of such as interaction, and I think if there are any negative or ambiguous feelings involved that the family may need to put those aside or at least carefully consider the impact of those on the possible productiveness of such a meeting. In many cases, if such a meeting were to occur, I think what the family would have to say would be, as the doctor who wrote the article said, coming from a place that is "not accusatory" but rather "a need to revisit earlier events."
I think there could be growth and learning (and potentially "closure") from the perspective of both family members and the physician in a wrap-up meeting. I think many doctors may be hesitant to take part in such a meeting, though, because they couldn't charge a fee for their time for it, because we live in such a litigious society, and/or because it would be emotionally difficult to face many of the emotions that could arise.
And because I think doctors aren't good at death. They are trained to help people avoid it, and I think it's especially difficult for them when that has to change. Like society in general, doctors almost always default to prolonging life. Even for those who refer patients to hospice care more often than their peers because of their chosen specialty areas, giving up that control (which is surely how they must see it) isn't easy, and, as a result, in many cases and for a variety of reasons, I think physicians tend to recommend more aggressive end-of-life care for their patients than they would for themselves.
In cases when the physician is involved with the decision for a patient to bridge over to hospice, it's not unnatural for him to want to disconnect with the patient at this point, although - let me be clear - in my opinion, it's not right for them to do that. (It may be hard for him to stay involved in the care of a patient whom he knows is going to die soon, but that is part of his responsibility.) Instead of being a "hero" through providing a cure for the disease for a patient, they have the opportunity to serve in that role by supporting and guiding a patient and his family during the toughest of times, which surely requires true fortitude and is a sign of a truly devoted caregiver.
Dad's oncologist completely failed in that regard. Once we had brought up the idea of hospice and after he had agreed that it was the best option at that point, he sat in Dad's hospital room and told my mom, my sisters, and me that he would still be involved with Dad's care and that he would follow-up by calling my parents' house on the following Monday to check in. And, as I recounted earlier in our story, that was the last any of us ever heard from him. I wonder if he has ever thought about that last conversation - or my dad and my family since it occurred.
Making the decision to stop curative treatments for Dad was both grueling and easy. It was easy because we didn't feel like we had any other choices - it was crystal clear to us that he couldn't stay in the hospital, and he couldn't go to rehab. We didn't want to consider a nursing home as an option at that point, and we needed help to take care of him at home. With hospice, that's what we were going to get. And Dad was asking to go home, saying "it's too much." It was grueling because it's awful enough when a person has to make life-or-death treatment decisions for himself, but having to do that for someone else, someone you love so very much, is nothing short of torture. It's especially unfair when most of our knowledge has come from Google or in a ten-minute-long crash course taught by an oncologist who doesn't really know the person you love so damn much, while you listen in such a state of shock. It sets you up for a lifetime of second-guessing yourself: should we should have made a different choice somewhere along the way? Add that to the list of things that we will never know.
But back to the idea of a wrap-up session or at least some kind of communication between a patient's family and the physician after a patient's death: Does it seem like poor practice to anyone else besides me that physicians so rarely follow-up to find out the patient’s and/or family’s perspective on the treatment and the care provided? We’re all about quality assurance in business, but what about in health care? The QA processes with which I've been involved over the years as a healthcare provider center on things like how long a patient has to wait before being seen by a practitioner or how quickly the treatment note is written and filed after the intervention occurs.
So many treatments for seriously illnesses are judged solely on whether or not the patient survived, but what about the patient’s quality of life, what about the perception of the care the patient received, both during and after treatment? Shouldn’t this be part of the research collected in evidence-based practice? Capturing the patient’s perspective is central to research on quality of care because it provides a complete picture of treatment impact. This can be done with standardized questionnaires that ask patients to report on their functioning, well-being, symptoms, and satisfaction with care. To my knowledge, though, this data, is not collected routinely in either clinical research or practice.
I think about exit interviews and the debriefing process, the latter of which has become of particular interest to me as an instructor of future occupational therapists in relation to things that can be gained during post-exam, lab and clinical experience follow-up, and end-of-course interactions with students. I take to heart the things students in my classes say (not just to me but to each other and in written reflections) in wrap-up sessions and believe that the debrief is one of the most important parts of learning. I know there are some physicians and other healthcare providers out there who strive to glean information from which they can improve after patient interactions; I only wish there were more and that the "wrap-up" could become a standard part of medical care.
Debriefing with my students
