Tuesday, March 8, 2011
The trauma of surrogacy
Given the extremely heterogeneous nature of this literature, the review is mostly a narrative summary of what is known. The authors went to great lengths (and described these lengths in unusually exhaustive detail) to systematically capture all the relevant literature, grade its quality, and parse its findings, but this nonetheless represents their best efforts to summarize what they found. They ended up identifying 40 papers, looking at ~2800 surrogates. Most of the studies were North American, 2/3 were qualitative-only, and most included (or were exclusively about) end-of-life decision-making (which was not, to be sure, defined in any consistent way across studies). The quality of the studies varied just as much.
In general, they found that
1. Surrogates reported, overall, satisfaction with their role of surrogates, however
2. As a group they described that role as being profoundly burdensome, and self-reports of feelings of guilt and self-doubt about whether they made the right decision were present in a substantial minority of patients (when looked for). This theme seemed particularly prominent in the qualitative studies.
3. The few comparative studies (e.g. comparing surrogates who participated in EOL decisions vs. non-EOL decisions or comparing bereaved family members who were surrogates vs those who weren't) gave mixed results, however the better quality studies did suggest higher rates of PTSD in the bereaved who were surrogates than those who weren't, and the authors conclude that being a surrogate is stressful beyond that of 'just' being a bereaved family member.
4. 'Role-discordance' (ie the surrogate found themselves in a position of being one even if they didn't want to be) appears to be uniquely traumatizing.
5. It wasn't all trauma and guilt however; the countervailing theme in the qualitative studies was one of surrogates feeling that they had honored their loved ones' wishes and values.
6. Knowledge of a patient's treatment preferences and/or the patient having an advance directive, was associated with less stress, guilt afterwards. However the surrogate reporting that the decision that was in the patient's best interests went against what the patient would have wanted was associated with more burden (what that means is not specified - most people don't endorse statements like 'I don't want something that's in my best interest' so one assumes this reflects circumstances in which the surrogate thought the patient would want to live but were being advised nonetheless the patient was dying and it was in their best interests to be 'made comfortable.')
A few comments:
The authors bring up the idea of being a surrogate is a form of 'harm' to them. I don't think it would have occurred to me to formulate this situation in that way, but it makes sense on its face: this role/action is associated with long-standing stress and dysphoria, if not frank PTSD, to a degree greater than simply being a bereaved loved-one. What bugged me about that was that there is nothing wrong, and probably a lot good/right/ok/it-is-what-it-is about grief. Grief, loss, longing for the deceased, sadness, anger - we wouldn't be human without them and they are the unhappy but necessary part of love, human connection, family, etc. They all go together. So these things are 'harms' yes, but not anything beyond the human condition. On the other hand, surrogacy is a recent societal invention, a solution to a problem created solely by advancing medical technology, and a solution which assumes 'autonomy' is the most important factor in medical decision making. It didn't have to be this way, it isn't in much of the world, and while a return to strict doctor-knows-best paternalism shouldn't (and, culturally, can't) happen, we clearly can do better than making family members feel like they are responsible for life and death decisions on behalf of their loved ones, which they almost never are (most of the time the decisions are about, at most, the exact timing and circumstance of death but not whether or not the patient will survive), but it's clear they feel like they are all too much, as evidenced by these qualitative studies.
And the good news is that what surrogates identified as helpful for mitigating the stress of surrogacy were routinely things that we can control. While we've discussed at length on the blog the limitations of advance directives, they do seem to be protective in this study. "Do it for your kids." In addition, the high and persistent amounts of guilt and doubt that a lot of surrogates described can surely be reduced by, well, doctors being doctors and being as comfortable saying (ie, telling patients/families, making a recommendation about the right thing to do) "He's dying. The treatments we are giving him aren't helping him get better, and I am going to continue only those treatments which are making sure he is comfortable, and not suffering" as we are saying "He needs radiation," or "That needs to be biopsied," or "We need to intubate him to protect his airway." Instead of "What do you want us to do?" when all most family members are feeling is "I want him to live. I can't believe this is happening." The longer I do this the more I'm convinced that it's our abandonment of owning medical decision making on the deathbed which is the single most broken aspect of how we treat our dying (at least as much as it relates to individual clinician-patient situations; from a health systems standpoint there are clearly other huge Things Which Are Broken).
Does anyway use the 'do it for your family' approach when recommending AD completion for their families? I have, although not routinely, and have worried about sounding too coercive (ie suggesting they'll hurt their families if they don't do this) although that's probably me being overly sensitive about the situation.
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13 Responses to “The trauma of surrogacy”
March 08, 2011
Great review of an intriguing article! It makes me wonder what factors in the Advance Care Planning process might be more or less associated with traumatic feelings in the surrogate. I suspect that if a surrogate is actually present during the discussion and development of the documents, they would be less likely to be traumatized, but that is totally my guess.
I also agree that we place too much emphasis on autonomy. Patients and surrogates look to our knowledge and expertise to guide them, and we do them a great disservice to deny them our opinions. The next study would then have to probably be how traumatized physicians become after those types of discussions! How many of us have had doubts or second-guessed ourselves after telling a family this kind of news?
March 08, 2011
The Burden Of Choice becomes orders of magnitude greater when the outcome is death. As you state so well, we can mitigate the effect of this decision-making burden, by identifying and endorsing which surrogate choices are the best ones, from the medical perspective. I have colleagues, who all too often abdicate their obligation to give the surrogate clear recommendations.
For example the overwhelmed family in a conference about their ventilated and dialyzed father with anoxic encephalopathy who has not regained consciousness for 3 days following a 12 minute arrest. The critical care specialist refuses to give them an opinion, even when the family asks for it, prefering to reconsult the neurologist instead. I had another specialist colleague tell me that "I always stay in my organ".
I echo your comment that many times it really comes down to a choice of not whether the loved-one will die, but rather How will they die? If the decision maker remains ambivalent after going through the end-of-life decision-making (GOC) conversation. I often find that it does ease the burden for many if I state the choice from the perspective of the patient's experience with medical interventions. For the ambivalent surrogate it helps to be explicit that it is not a choice of survival, but rather, one of quality of dying. We can do a better job of easing the burden of choice for surrogates. As always, thought provoking commentary, Drew.
March 09, 2011
Great review of a very important topic! As a chaplain, I'm reminded how important it is for those of us who get to accompany these surrogates and other loved ones through this process to pay attention to their suffering in all of its aspects. I wonder how much different these study results would be if these surrogates all had someone like a chaplain to share their loss and guilt with and have those feelings heard and normalized. George Handzo
March 09, 2011
Really appreciate not only your review but also the insightful comments regarding the responsibility that we as a medical profession have to take for our role in reducing stress and uncertainty whenever possible for our patients and families. The comments above echo as well the frustration felt when families seek information as well as advice and we feel we can only give half the equation.
We can ease this for surrogates by placing the focus back on the patient and being more clear in our speech.
March 09, 2011
Thanks all for the thoughtful comments. dspacl, wow, quite a story, but unfortunately all too common - staying within your organ - ugh. I wonder if some of it is docs mistaking what they think families want from them. Yes there are families who want absolutes, 100% guaranteed predictions, but that seems really rare. Most people have figured out that life, including medicine, is a crap shoot and us docs are tossing the dice as well. However, that's not (that 100% prediction) what most people want - they're just looking for guidance - to be told that Given X, Given Y, and Given Z (which is usually The Patient's Condition, Their understood values/wishes/life priorities, and their prognosis) the doctor recommends such and such course of action. That's all (usually!) they are looking for, not the voice of God, not an authoritarian 'this is what we are going to do' but 'this is what I think is the best approach to the patient's care given XYZ.' And I'd say that if your not willing to do this for your patients then why the hell did you become a doctor, b/c in a very fundamental way what we do is decide what constitutes appropriate medical therapy/intervention.
Dr Bob - re: doctor trauma - several months ago I outed my own on the blog as I publicly agonized over the use of the term 'never' (in discussing prognosis in brain injuries).
March 10, 2011
I think the biggest problem is not knowing how to communicate: "There's nothing more we can do" "Do YOU want to turn off the Vent?"
I try to teach nurses how to have these "difficult conversations", but they can't get anywhere when even just one physician gives false hope:
"We can do X or Y" which implies that X or Y will make them better...but no discussion of how sick the patient actually is & how poor their prognosis actually is...and how X or Y is extremely unlikely to change that...
Most families hang on any hint of someone able to make things all better--especially when it's a self confident sounding MD.
I know that Residents are now getting more EOL education in school and most of them seem open to discuss all of this, but they want to please their Attendings. These too often tend to be the "miracle workers" who see death as a failure and too often won't even discuss the topic.
I had an MD tell me recently that his patient wasn't yet ready for a Palliative Care consult because he might still be able to do "something". Her EF was 5% & was lower the next night. She understood her prognosis was poor. The MD said he would readily refer to hospice "when she was ready" and didn't even want to hear me try to explain what PC was about...just acted like I was talking down to him about something he already knew all about! (Not)
It's an uphill battle in some quarters...
March 10, 2011
Yikes! Hang in there Cyndi. You hit on a major barrier to having the conversations. I, like you, feel that many recently trained physicians have at least a modicum of PC skill in their bag of tricks, and if not otherwise inhibited that skill will grow in to a practice style...someday soon, I hope.
I have made a little pocket card for docs titled "My Patient is not ready" - Tips on talking to your patients about Palliative Care. It was done at the behest of case managers who tell me that attendings often say their patient is "not ready" when they approach the doc about calling a PC consult.
The text includes a prompt "check that you are not the one who's 'not ready" (to talk about it). So true!
March 10, 2011
Dennis,
That little card sounds great. Care to share? Will post it here as an original post with attribution to you of course. Who knows, a lot of other people may have independently made similar cards and together we can make an even better one. Crowdsourcing!
March 11, 2011
"In addition, all opinions expressed on this blog [PalliMed] are probably wrong, and should never be taken as medical advice in any form." Really??
March 11, 2011
Anon,
Great find. I actually forgot it was there. I think that was probably written by Drew, back in the early days when a little snark and self-deprecating humor was what every good blog had. These days we know that we know everything so I should probably get around to changing it.
Kidding on the omniscience, we are still humble but we can write a better disclaimer!
Credit to you (anonymous) for being the first one to make a mention of it in the past 5+ years.
March 11, 2011
I love our disclaimer and stand by it although looking at it our copyright stuff needs to be updated.
March 12, 2011
I love the disclaimer also. Good midwest self deprecation...form your own opinions about what is good advice, don't expect us to do so!
Christian, I am only in the proof stage of putting it on paper. If I were to post this online, then I'll have to get permission from a couple of folks, LOL. I'll let you know what comes of it. The crowdsourcing project sounds very interesting. You guys are brilliant in my book. Cheers!
March 13, 2011
I was the decision maker for my dad, and being the youngest of four very opinionated siblings pulling in different directions, it was extremely stressful. All three of my siblings (two of whom were out of town and flying in once in awhile during the end stage of his Alzheimer's) still think hospice "killed" my dad by putting him on psychotropic medications (Seroquel, I think). I worked for a hospice at the time in a non-clinical role, and I had been a chaplain in the past and so I had some understanding, at least on an intellectual level, of what I was in for.
The role of the IDT in supporting me was absolutely key in my surviving the nightmare of my dad's final four months. They could all see very clearly what was happening with the family dynamics and were constantly telling me I was doing the right thing, and explaining why it was the right thing. Hugs abounded for me from the team. They truly held me together. I cannot imagine going through that without the support of the hospice team, or what the ensuing grief would have been like. I am very grateful.
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