Wednesday, March 11, 2015
The truth is, I have been holding onto this song, Timshel, for years, knowing it would one day fit perfectly into a palliative care related essay. It is my professional anthem in many ways, and when, in the late summer heat in a dusty field in Oklahoma I saw the song performed live, I had chills and a few tears. Hearing it conjures the sum of emotions of those times we have seen families make impossibly difficult and heart breaking decisions, and the helplessness of being there with them, yet nowhere near them all at once.
In their article "Talking with Parents About End of Life Decisions for Their Children" In February's Pediatrics, Mirjam A. de Vos and colleagues embarked on a study to see if they could identify the ways that PICU physicians communicate and participate in decision making with parents, specifically regarding life sustaining treatment. With significant data indicating that parents prefer to have a “shared decision making” model, (defined as “a decision making process in which the physicians and the patient or his or her representatives exchange information, deliberate together, and decide together which treatment should be implemented or should not be implemented anymore”) de Vos and her colleagues set out to record actual end of life decision conversations and then assess the level of shared decision making both qualitatively and quantitatively to see how well intensivists in the Netherlands performed this task.
Over the course of two years, the research team audio-recorded 47 conversations between physicians and parents of children in which a decision related to withholding or withdrawing life sustaining treatments was discussed. Conversations were then assessed for: speaking time (physician, parents, nurse), communication behaviors through the decision-making process including providing and receiving information, deliberating, and reaching a decision, and finally the extent of shared decision making.
As a physician, my hope in reading this was to know “what did the docs do well, what did they do the right way?” and then to be able to reflect on my own skills and behaviors in the family meeting/goals of care conversation and consider ways I can improve. Turns out, docs did one thing really well: talked. They talked about the facts. They shared their perspective and their opinions. They explained which decision they would prefer. It was the physicians who spent most of the time talking, with an average of 67% of the conversation time being carried by the physicians. Some of that time was also spent acknowledging the parents’ emotions and inviting them to ask additional questions.
How does this play into the model and practice of shared decision making? Clearly if parents are going to be involved in making a decision, they need information on which to base that decision. No problems there, it seems. What else is key to shared decision making, though?
The first step is finding out from the parents how do they prefer to make decisions? Reading this is one of those “smack my head” moments. Of course! Not everyone wants to have the same share in the shared decision making, and the only way to know is to ask them. This was done by 0% of the physicians. Unlike being taught how to listen to heart tones or how to read an EKG, though, the skill of assessing preferences for participation in decisions is not one that clinicians are taught (Billings 2011). In my own attempts to find resources for how to properly assess for patient preferences for shared decision making, I found that much of the writings related to the “how to” peaked in the mid to late 1990s. (If you want to take your own academic detour, as I did on this topic while writing this essay, check out Elwynn’s article from 2000 and its list of sources).
There is a growing body of evidence related to what parents want from their children's doctors in terms of end of life decision making. An Australian study found that “parents do not want doctors to be the ultimate decision maker for their child; parents want doctors to support them to be the end-of-life decision maker for their child; and in their decision making and afterwards, parents find information, recommendations, referral and follow up by their doctor helpful.” (Sullivan et al) Studies like this help us know generalities of what parents usually want, but cannot be guaranteed to apply to every parent in every situation every time. It is still imperative to learn ways to assess how they want to participate in decision making related to end of life care.
Physicians asked parents about values or preferences regarding continuation or discontinuation in 21% of the encounters, but in 84% of the encounters the parents provided information about these values and preferences. Despite only 11% of the encounters having a physician invitation to share emotions, parents to share emotions , 100% of parents expressed emotions of grief, fear, despair and frustration, and 79% of the time this was acknowledge by physicians. Without having the transcripts in front of us, we can’t say that these were failures on the physicians part – perhaps the emotions were being expressed before the opportunity arose to ask for those emotions to be shared. It would be obtuse to invite a parent who is expressing emotion to share their emotion, just as parents may have provided information about their values and preferences before the physician had the opportunity to ask. This may be a case of “looks bad on paper,” but in the actual scenario was appropriate.
This paper and this particular study are a part of a larger research project this group is conducting. The findings and data they have culled thus far are insightful, and this is among the first studies to actually have recorded those end of life conversations, rather than being done retrospectively and asking parents to provide their recollection, after their child’s death, of how those conversations unfolded and how decisions were reached. Many of those studies have been conducted, and here are studies asking parents to provide their perspective on the decision making at the end of their children’s lives, and then relating those to symptoms of depression, anxiety, and PTSD (Sullivan, Caeymaex, Madrigal among others).
What has NOT been published thus far, (to my knowledge and based on my Pubmed review on February 4, 2015), has been a prospective, longitudinal study in which the end of life conversations are recorded, decisions are made, and then in the months or years following, parents are asked to provide their feedback related to those conversations qualitatively and quantitatively, as well as assessing parents for depression, anxiety and PTSD. This type of project would allow a more objective study to be done, in which the cloud of emotion and time can be set aside from the end of life conversation, and also in which we might be able to know how heavy that could hangs. Perhaps parents’ recall of the conversations are spot on. If they are not, then what are the components that stand out or, in memory, are not consistent with what was recorded.
Even in the current paper, in which it was decided that most encounters results in “some shared decision making,” we do not know how this played out in terms of parent satisfaction or comfort. Were most of the parents fine with “some shared decision making,” or did most want a more active role? Were the instances in which there was “more shared decision making” better tolerated and better handled by families versus those that were only “some shared?” How will families feel about their role in the decision making process as they move forward?
Physicians have concerns about end of life decision making and, nobly, often wish to protect parents from the weight of burden of life and death decision making. There are physicians who take this decision upon themselves and inform parents of the decision and the plan, or make strong recommendations leaving little to no room for parental dissent. Other physicians are themselves incapable of making these decisions or offering the families recommendations or suggestions, feeling that it is a personal family decision and the physicians fear unfairly influencing families in the decision they will have to ultimately live with. Some of us are trying to find a balance somewhere in between, moving back and forth along the spectrum.
As researchers continue to gather data for us clinicians, it helps us reflect on our skill-sets relating to one of the most important aspects of our work: holding the hands and walking alongside patients and families facing their mountains. “You are not alone in this,” is what parents are asking to hear. In our role we can help them understand timshel, “thou mayest," and its counterpart, "thou mayest not." At the end of life, when patients and families can feel so powerless and as if everything is entirely out of their control, one of our roles can be to continue to show them the choices that lie before them, the choices they are able to make in order to regain control over this very precious time, the choices they can make to continue to be at their fullest as individuals, as complete families, before a life is over.
Billings, J Andrew. "Part II: Family Centered Decision Making." Journal of Palliative Medicine. 2011.Volume 14 (9). 1051-1057
Elwynn, Glyn. Edwards, Adrian. Kinnersley, Paul. Grol, Richard."Shared decision making and the concept of equipoise: the competences of involving patients in healthcare choices." British Journal of General Practice. 2000, 50, 892-897
Sullivan, J. Monagle, P. Gillam, L. "What parents want from doctors in end of life decision making for children." Arch Dis Child. 2014. 99:216-220
Caeymaex, L et al. "Living with a crucial decision: a qualitative study of parental narratives three years after the loss of their newborn in the NICU." PLoS ONE 6(12): e26833
Madrigal, Vanessa, et al. "Parental decision-making preferences in the pediatric intensive care unit." Crit Care Med. 2012. 40 (10):2876-2882