Tuesday, September 24, 2013

No More Excuses: Having tough talks in pediatrics




“What words can be uttered? Your turn just slightly and there it is: the death of your child. It is part symbol, part devil, and in your blind spot all along, until, if you are unlucky, it is completely upon you. Then it is a fierce little country abducting you; it holds you squarely inside itself like a cellar room – the best boundaries of you are the boundaries of it.” – Shirley Jackson, from “People Like That Are the Only People Here,” in Birds of America*
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“Doctor, you might have children just like anybody else. Would you want somebody to give you false hope or tell you, ‘OK, your child is gonna be fine,’ and you know she’s not?”  - Parent feedback (Meert et al)

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“Barriers to resuscitation status discussions were ranked according to the percentage of physicians and nurses who identified the issues as often or always a barrier. The top 3 barriers were unrealistic parent expectations (39.1%), lack of parent readiness to have the discussions (38.8%), and differences between clinician and patient/parent understanding of the prognosis (30.4%).”  - Sanderson et al. 
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I first read Shirley Jackson’s short story “People Like ThatAre the Only People Here: Canonical Babbling in Peed Onk” from her collection of short stories Birds of America* as a college freshman. At that time, nary had a thought entered my mind about a career in medicine, and I read the book during my coursework to obtain that ever so useful creative writing degree. The story was used again in a course I took later in college, and, again after I changed paths and went into medical school. It just kept showing up, and I kept reading it. The strange thing was, though, that I would forget I had read it until a few sentences in, when I would start to think, “Huh, this sounds very familiar…”

I’m sure that the 18 year old version of me who read the story took something from it far different that any of the other versions of me who have read it. As it is now, being a mom as well as a physician, I find it almost impossible to get through because it is too real and too scary. Although “fiction,” it is a scene that happens every day, in which moms like me, with kids like mine, and doctors like me, with patients like mine, find themselves abducted by that “little country.”
So when I sat down to write about Amy Sanderson and colleagues’ report on their findings of “Clinician perspectives regarding theDo-Not-Resuscitate order,” I knew I had read something before that would tie in with this study. It was another case of “Huh, this sounds familiar…” I knew there was another angle to this, so I dug through my file folders until I can to the one that said “Parental Perspectives” and another one labeled “Provider Perspectives.”

Both are very full of articles with frayed edges; and in these folders, a dichotomy.
In one folder, articles filled with attempts at identifying the needs of parents by culling through their experiences.  Common themes present themselves: losing a child is incredibly difficult – whether that child was a 17 week fetus or a 17 year old football star; there are no ways to be prepared for the loss of a child; honest and straightforward information and compassionate communication from doctors and nurses is helpful and necessary. In short, parents what to know what is going on, and they want to be able to have the information, even when there is prognostic uncertainty, so that they can be active participants in the care of and decision making for their children.

In the other folder, articles filled with identifying how pediatric care providers handle communication during times of critical and/or terminal illness. These pieces consistently find similar issues with communication between provider and parent/decision-maker. In this particularly lovely Pallimed piece from not so long ago, the author (okay it was me), discusses some of the barriers that seem to keep pediatricians from having the tough conversations. That post particularly pointed out studies citing lack of confidence in these communication skills, a lack of training in these skills, and a concern about prognostic uncertainty in pediatric patients’ disease processes as key barriers.
There is another common barrier theme that arises from the studies of the providers, though. It is one that, in light of what we see from parent surveys and studies in which parents are almost begging for more information, may surprise you.

Pediatricians give, as one of the most common reasons for NOT engaging in goals of care, end of life, or code status conversations a “lack of parental readiness” or “lack of parental acceptance.” There are worries about “unrealistic parent expectations,” as well as “clinician concern about taking away hope.” When I read these reasons, and also think about the combined lack of education and training, as well as lack of confidence, it makes sense how these crucial conversations become avoided. If you don’t feel like you know what you are doing, you are afraid of messing it up, and also afraid of upsetting or having conflict with parents, then pausing to ask “what are we doing and why? And is this the right approach or your child?” takes a backseat to the pressing issues of the vent and the drips and the day to day medical management. Just because it is an understandable position doesn’t make it right.
At the same time clinicians are grappling with feeling unprepared and uncertain of how to communicate, we have parents saying, “we need information from our child’s care team so that we can know what is going on, have time to process it and understand it, and be able to feel that we are helping make to most appropriate decisions for our child.” They want information given in smaller portions, in lay terms, on a regular basis.

As a parent is quoted in a study by Elaine C. Meyer and colleagues, “Listen. Answer all questions. Give all information—parents can handle it. What we cannot handle is not knowing what is going on. If something is going wrong, tell us.”
Is anyone else getting that sinking gut feeling?

Back to the Sanderson’s study and article. Sanderson and her colleagues David Zurakowski and Joanne Wolfe wanted “to identify clinician attitudes regarding the meaning, implication, and timing of the DNR order for pediatric patients.” Literature exists for adult populations, but this was the first specifically targeted at the pediatric realm.


What they found is disconcerting. Although about 2/3 of those surveyed -- physicians as well as nurses-- stated that “a DNR order indicates limitation of resuscitative measures only in cardiopulmonary arrest,” the other 1/3 “considered the DNR order to be the threshold for the limitation of treatments not specifically related to resuscitation.” Finally, about 6% of those surveyed “believed that a DNR order implies that only comfort measures are to be provided.”
Let that sit for a moment.

I’m sure most of us have had the experience of being called on a patient and hearing something that begins, “Well, she’s a DNR, but I went ahead and checked her vitals anyway and she has a fever of 102.” The implication of that phrasing, or variants of such phrasing, are that since the patient “is” a DNR (it’s a new species, look it up) that routine evaluation and management of non-cardiac arrest scenarios is to be discontinued. I cringe when I hear this call, and cringe more reading the misguided implications of the DNR order in adult, and now, in pediatric literature.
Perhaps the failure to have adequate communication upstream leads to consequences in care downstream when DNR orders are, as was found in Sanderson’s study, perceived to affect care beyond response to cardiopulmonary arrest.

How does this happen? How does a DNR order become a signal of “comfort care only?” Or lead to an assumption that it might include “limitation or withdrawal of diagnostic and therapeutic interventions?” Theory: Given the discomfort that pediatric providers have with communication near the end of life, but also their desire to protect their patients from what might be seen as a futile intervention, a conversation about a DNR order might be a proxy for a “bigger” conversation. It becomes a sort of substituted goals of care conversation, in which decisions are made and judgments potentially assumed, but in which that critical element of mutual understanding between all parties involved remains lacking.

There has been a growing demand for increasing education aboutcommunication at the end of life and palliative care to pediatric residents, but it is slow to gain steam in training curriculum already tightly packed to fit into three years. And this does little to address the needs of practicing pediatric providers, doubly frightening since they are the ones training the future providers. It is a need that, no matter how far we advance in the world of medicine, is going to remain. Sad as it is, difficult as it is, unfair and tragic as it is: children are going to die. These children and their families deserve care providers who can as deftly handle end of life care as they do handling vaccination schedules or chemotherapy regimens or DKA.
As a parent, the idea of something medically horrible befalling one of my children is almost too much to bear. The idea that I might be left in the dark about his condition or prognosis and not have the information I need to make the best decisions for my child and our family is another layer of suffering I don’t think I could tolerate. When the unthinkable happens and a parent is kidnapped into that “cellar room” that Lorrie Moore described,  she needs to hear voices from the outside telling her what is going on throughout her time in the cellar, not just when it is about to be flooded or set ablaze. And though no one can truly get into that cellar room with her, they can open windows into it, hold a hand through it and promise not to let go.  

For those providers who don’t feel they can do it, there are providers out there who can and will. There are those of us passionate about pediatric palliative care here to guide and support our professional colleagues just as much as we are here for the patients and the families.  We know that sometimes the providers feel like they are in their own cellar room, and we care about our professional colleagues as well as patients and families. We can’t help you if you don’t let us, though, and even though it can be hard to ask for help, consider the alternative. Consider the patient and her family. Consider that perhaps after having a palliative care provider there with you a couple of times, you will be able to feel confident and comfortable enough to handle the next one on your own. And then maybe teach others how to do the same…just like an invasive procedure in which you “see one, do one, teach one,” the end of life or advanced care planning or code status conversation(s) are skills that need to be honed and practiced…and then TAUGHT.
The burden isn’t just on pediatricians to ask for help from their palliative care colleagues, though. For those of you adult palliative care providers out there, don’t think you can weasel your way out of this: you are needed as well, and yes, you CAN handle working with young patients.  Just as pediatricians shouldn’t opt out and say “but I’m a pediatrician, I don’t do death,” you adult HPM docs don’t get to say, “But I’m an adult palliative care provider, I don’t do kids.”  We’ve all got to pitch in here.
Really and truly, you can do it. And if you run into a question or a problem along the way, guess what, the pediatric palliative care community is pretty small, and we are generally very nice,  and we LOVE to help our colleagues. You can email us (I’m pallcareriegel@gmail.com or eriegel@kumc.edu) or call us or hop onto our listservs. AAHPM has a Pediatrics SIG. CAPC has an entireforum board for pediatric palliative care issues. The American Academy ofPediatrics has a SIG for pediatric palliative care. The NHPCO has a section onpediatric palliative care. We live on Twitter as #PedPC.  I’m missing other routes and organizations here, so if any one reading this wants to add to the comments, please do. Basically, we want to shout “Help us help you!”
If we can work together, everyone will stand to benefit.

ResearchBlogging.orgSanderson A, Zurakowski D, and Wolfe J (2013). Clinician Perspectives Regarding the Do-Not-Resuscitate Order. JAMA Pediatrics PMID: 23979224



Other cited works:

Beach, M. C., and Morrison, R. S. (2002). The effect of do-not-resuscitate orders on physician decision-making. Journal of the American Geriatrics Society, 50, 2057-2061. (Open Access PDF)

Longden, J. V. (2011). Parental perspective of end-of-life care on paediatric intensive care units: a literature review. Nursing in Critical Care, 16(3), 131-139.

Meert, K. L., Eggly, S., Pollack, M., and Anand, K. (2008). Parents’ perspectives on physician-parent communication near the time of a children’s death in the pediatric intensive care unit. Pediatric Critical Care Medicine, 9(1), 2-7. (Open Access PDF)


Durall, A,, Zurakowski, D., and Wolfe, J. (2012) Barriers to conducting advanced care discussions for children with life-threatening conditionsPediatrics, 129(4), e975-e982 (Open Access PDF)

Photo credits: 
Birds: Audubon "Illustrated Birds of America"
Bridge: Emily Riegel Personal 
Child: Emily Riegel

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