From The Chair
Our expectations shape our experience. One of my mantras — which I recite both to myself and (I hope without undue annoyance) to those with whom I work — is that we need to manage expectations. This I find is true in many areas of endeavor where I, or the group I am working with, attempt to do something big and important.
At a personal level, much of my own happiness depends upon what I expect, and thus, whether I am pleased as my expectations confront reality, or whether I am acutely or chronically disappointed. To take one example, over the past few years I have gotten back into running long distance races such as half and full marathons, largely at the instigation of my wife. Lynda is a relative running novice and wants to experience all that running has to offer. To call them races, though, immediately spurs my expectation that I will somehow be competing in these events, which in reality are more like long slow runs (LSR) than races. One of the most important elements to whether I do or do not enjoy the preparation for the LSR, and the event itself, is whether I can manage my own expectations, aiming neither too low (in which case I lose interest and then my motivation) nor too high (in which case the self-inflicted pressure to perform kicks me into over-training, getting hurt, and burning out). The same is true, with surprising little alteration of the general gist of managing expectations, about my efforts to conduct a long-term research project.
When providing pediatric palliative care, I often am very mindful of the need to manage expectations. When we are meeting a child and family for the first time, I want to assure that we neither over- nor under-promise what we can provide in terms of service or outcomes. I often will promise that our team will work as hard as possible to assure that any symptoms that are bothering the child will be treated as best we know how, while at the same time saying that while I wish I could promise that the child will be completely comfortable. But that promise I cannot make, because sometimes symptoms are really hard to treat. If the family has expressed a desire to be discharged from the hospital and go home ASAP, and we simply know that cannot safely arrange hospice late on a Friday afternoon, part of my job is to manage expectations by clarifying for the family, and all else involved, what the time frame must be for going home. I am sure that some members of our Section would be able to promise and deliver on these items that make me leery of making a promise, and that is great, but I have limits, as does the palliative care team with which I am honored to work. A key part of operating with integrity is knowing one’s limits and alerting others about them.
Pediatric palliative care program development and ongoing maintenance is another arena in which I find that managing expectations is very important. For new or young programs this may be particularly true. If a hospital or region has not had a program, the new program may at first be slow to gain new patients. Suddenly, after six months or a year, it may be overwhelmed. When Tammy Kang and Gina Santucci started our program at CHOP, our motto (at least, the one I kept reciting to myself) was “Slow and Grow.” We worked hard to not over-promise, because the harm of underperforming might take years to undo. Yet over-promising is so darn tempting, especially when trying to convince hospital leadership that the program is worth the investment to create and grow. But beware: much of the lack of success that I have witnessed, both of individuals and programs, has been due to a large degree by not keeping expectations reasonable. Far better to under-promise and over-perform.
As the field of pediatric palliative care has grown in terms of professionalization (with the rise of Board certification and fellowships) and respect (which may not always be apparent from every interaction we might have with others, but is slowly and steadily increasing), we will also need to think through collectively what expectations we want to advance for ourselves. Quicker than we might realize, we are being called upon to handle some of the most challenging problems in pediatric clinical care. I am not referring here to cases with difficult pain and symptom management problems or with needs for deep levels of decision support for patients and families. These are the long-standing concerns of pediatric palliative care. What I mean is being involved with patients whose care is costly, or particularly burdensome or difficult for other clinicians, or whose outcomes may not be in alignment with the outcomes that public reporting metrics deem to be good. We need to start preparing ourselves for what promises we want, and do not want, to make.
Which leads, finally, to what members in our Section of Hospice and Palliative Medicine should expect from me as the new Chair for the Section. As the fourth person to hold this position, after the pioneering work of Marcia Levetown, Sarah Friebert, and Brian Carter, I neither want to aim too high nor too low. I hope to build on all that we have already done, believing that what we do together is what will really make a difference. Over the coming months, we are going to be rolling out some new offerings via our wonderful email listserv: on roughly a monthly basis, the listserv will present either a Case of the Month, a Drug/Device of the Month, or a Coding Consultation of the Month. We hope that these will continue to keep our email-based discussions vibrant and educational. We will continue the excellent newsletter, and for both the listserv and the newsletter, we will work to make sure we are meeting the needs and matching the interests of the earlier career stage folks who are joining the SOHPM. In these endeavors, will continue to look to Rick Goldstein, Tressia Shaw, and other members of the subcommittee on Membership and Internal Communication. Thanks to so many of you who have worked in the past on creating great offerings at the annual AAP NCE meeting, we will carry on this tradition in the years to come. We are also working to provide a way for SOHPM members from the four corners of the globe to be able to share published and unpublished resources, and hope to have this ready for primetime in the coming year. Beyond these efforts to facilitate collaboration and learning amongst members of our amazing community, we will also be working to improve the care received by children with serious illness and their families — and while I cannot promise yet exactly how, and the projects like these always seems to take longer than they should, we are in this LSR towards our goals together, one step at a time.
Chris Feudtner, MD, PhD, MPH, FAAP