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Tuesday, March 8, 2011

The trauma of surrogacy

The current Annals of Internal Medicine has a provocative systematic review on the effects on surrogates on surrogate decision making. That is - how being a surrogate affects the surrogate (emotionally, effects on grief, trauma, etc.). We've followed the literature about the accuracy (or not) of surrogate decision making, how surrogates make decisions, etc. but this was the first time I'd really paid much attention to this literature. And it ain't pretty - but it also gives us some good guidance to how we can help these individuals who are often as much our 'patient' as the patients themselves. It's a good one for the teaching file - particularly for advanced learners like fellows.

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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