(A hearty welcome to Emily Riegel, MD (@emriegel) a Med/Peds physician who completed a hospice and palliative medicine fellowship a few years ago and is now at KU Medical Center helping lead pediatric palliative care in Kansas City. Emily is a keen observer who could easily be writing the great next medical drama on TV, but until then I'm happy she is contributing to Pallimed - Sinclair)In the March issue of Pediatrics, Jonna D. Clark, MD, and Denise M. Dudzinski, PhD, take on the audacious task of encouraging pediatricians to step into the role of decision maker for terminally ill children and, in doing so, help alleviate the burden of making decisions regarding CPR from the shoulders of parents. In “The Culture of Dysthanasia: Attempting CPR in Terminally Ill Children,” Clark and Dudzinski call into question the practice of requiring the “opt-out” approach to CPR, and state that this “fails to appreciate the nuances of the special parent-child relationship and the moral and emotional complexity of enlisting parents in decisions to withhold CPR from their children.” The authors then provide two tenets on which physicians ought to base this action of taking over decision making for the parents of terminally ill children.
The first tenet is a brilliant description of the “therapeutic goal” of CPR, one that I would love to see come into more common use, to become as second nature in physicians minds’ as being able to state that “the therapeutic goal of antibiotics is to kill bacteria, or aid in the killing of bacteria.” The authors ask that physicians begin to look at the intervention of CPR in terms of its therapeutic goal being “not merely to resume spontaneous circulation but rather to provide circulation to vital organs to allow for the treatment of the underlying proximal and distal etiologies for the arrest.” This definition of the therapeutic goal of CPR was elucidated from the article by Bishop, et al, in their 2010 piece from the American Journal of Bioethics, which also asks physicians to rethink CPR’s utility based on its ability to address “the underlying disease process or…the distal causes of arrest.”
If we more readily viewed CPR in this
light, would it become just as easy to say, “CPR will not fix the advanced,
terminal cancer that has ultimately led, or will ultimately lead, to cardiac
arrest, so we [the healthcare team] are not going to give you CPR since it is
not a therapeutic option,” as it is to say to a patient (or his family),
“Antibiotics will not address the viral cause of your upper respiratory
infection, so I’m not going to give you antibiotics since it is not a
therapeutic option.”
Perhaps it would.
If one looks at physician’s prescribing practices in terms of using antibiotics1, often despite guidelines and recommendations and clinical evidence that they are not going to aid in reaching a “therapeutic goal,” it seems unlikely that when it comes to holding back on THE intervention, that physicians will actually be able to commit to making a much bigger decision for their patients.
The second tenet set
forth by Clark and Dudzinski is that there are limited cases in which
physicians ought to exert the decision making, and is only in cases where “all
treating providers agree that attempting CPR is highly unlikely to achieve this
therapeutic goal or will merely prolong dying.”
Let’s read that again, especially the part about “All treating providers agree…” Like adult patients facing a terminal illness, pediatric patients facing terminal illness often have a long list of treating providers. Just about any –ogist or –ivist may have some role on the treating team and could then be considered among the treating providers. The biggest challenge it seems is getting any group of physicians, who are highly educated and clearly very caring and committed providers, to agree on prognosis. Add in to that needing to agree on it publicly, perhaps in front of a patient or parent(s), and to remain consistent in it, along with the profound difficulties with prognostication itself in pediatric patients2, and I propose that the situations in which the criteria to move forward with physician derived DNR orders are going to be rare.
While my critique is in no way directed at the work of Clark and Dudzinski, who do a lovely job of outlining their objective, using case examples, and pulling in bioethical principles, especially as they apply to the unique nature of the parent-child relationship, I do find myself feeling critical of us practicing physicians and wondering if we are really up to this task. Is it in the nature of pediatricians to take this on? When I lecture on pediatric palliative care for our fellowship lecture series, I point out that as much as kids are not just “little adults,” and that they require a vastly different approach to providing them with palliative care, so is the same for pediatricians. Being med-peds trained, and working in both adult and pediatric palliative care, as well as a pediatric hospitalist, I can tell you: pediatricians are different. Much different from internists. It’s a gentleness of heart and spirit, an eternal optimism toward the world, a bruised but never relinquished hope that we really can make a difference, one child at a time. It’s what gives these people the ability to be the doctors that they are: serving kids and their families, advocating for children, and very often, retaining a certain sense of wonder at the world. These same qualities, though, when it comes to tough conversations, giving bad news, breaking the hearts of parents, do not work well. You think it’s hard to tell a wife or an adult child that the 87 year old patient is not going to recover from his cancer and that he is going to die? Imagine looking a parent in the eye and saying those same words. I think that’s why many of my colleagues, even seasoned adult palliative care providers, have looked at me and said, “Uuuuugh. How can you do what you do?” And most pediatricians’ responses? Well, let’s just say I often feel like I should relocate to the Island of Misfit Toys.
With this in mind, I am even more appreciative of any calls to action of the type in this article. End of life decision making in pediatrics is wrought with legal, moral, ethical, personal and emotional entanglements that vary widely. Attempts at creating a standard of practice, or at least suggesting one when it comes to end of life decision making for children seem so reasonable and necessary. A shining example is the work of Dr. Sarah Friebert and Dr. Kaci Osenga in creating a trigger list for perinatal palliative care consultation.3 Having these trigger lists helps raise an awareness of the need for appropriate pediatric palliative care, much like the “Check Engine” light on the dashboard alerts one to the need to do just that. Without the proper tools to look at the engine and address the issue, though, that light does little to actually fix the problem. Evidence shows us that, just like I have minimal comfort with opening the hood of my car, so do pediatric residents, fellows, and attendings themselves have minimal comfort in handling these difficult patient care situations. A study by Orgel, et al, noted that 75% of pediatric residents, 60% of pediatric fellows, 40% of pediatric attendings (general and subspecialty) felt their knowledge and comfort level in delivering bas news was “less than sufficient.” 4
What would we say if 40%
of mechanics told us they felt their knowledge level was “less than sufficient”
when it comes to helping us with that pesky “Check Engine” light? Or, what if
40% of intensivists felt their knowledge level was “less than sufficient” to
intubate a patient, or run their pressors, or place a central line?
Delivering bad news
should be a basic skill that every
physician has.5 If a physician can’t deliver bad news, how is that
physician going to deliver the bad news AND make a decision regarding code
status for a child? It doesn’t seem behaviorally congruent.
It is through articles that place a call to action, such as Clark and Dudzinksi’s, that practitioner’s are given the opportunity to reflect on their own practice, to see that there are guidelines and support structures for dealing with these gut wrenching situations, and develop a skill set for use when the need arises. We need to have the skill set so that in those complex, difficult moments of crisis, we can feel the comfort that comes with a plan. We can guide our team, our learners, and most importantly, guide and support our patients and their families.
1Several
studies in the past 20 years have found high rates of inappropriate antibiotic
prescribing practices, with one
finding that 50% of children seen by a physician for diagnosis of upper
respiratory tract infection were prescribed antibiotics. David R. Nash, MD; Jeffrey Harman, PhD; Ellen R. Wald, MD; Kelly
J. Kelleher, MD Arch Pediatr Adolesc Med. 2002;156(11):1114-1119 (Open Access)
2 For those adult
providers out there, imagine prognosticating without well validated or widely
clinically tools, fully understood disease processes, and in physiologic
organisms (children) that seem to have a resiliency beyond understanding. Drew posted a review of a prognostic tool for pediatric oncology patients. You adult providers, check out that prognostic tool and tell
me it doesn’t make you cringe a bit.
4 A Failing Medical Education Model. Faitan Orgel, Robert McCarter,
and Shana Jacobs. Journal of Palliative Medicine. June 2010, 13(6): 677-683.
doi:10.1089/jpm.2009.0338. (Subscription Req'd)
5 See also an article on the lack of training in end of life or
palliative care issues reported by neonatology fellows. Boss RD, Hutton N, Donohue PK, Arnold RM. Neonatologist Training
to Guide Family Decision Making for Critically Ill Infants. Arch Pediatr
Adolesc Med. 2009;163(9):783-788. doi:10.1001/archpediatrics.2009.155. (Open Access)