Reader response
Myron Yaster MD
From Karla Castro-Frenzel, M.D. Assistant Professor, University of Rochester commenting on December 18, 2024 PAAD Hospice, palliative care, and the death of a child. A mother's perspective
Thank you so much for this PAAD, which touched on a rarely mentioned subject: the dying child and the grieving family.
I felt an obligation to respond, as I'm an oncology patient working in a pediatric world.
As I read this poignant account of what this family went through, and the apparent avoidance of any talk to death, I recalled how much pediatric and adult medicine can learn from each other.
The author and mother describes that no one addressed the psychic pain in her child. I know this psychic pain extremely well. Living with a terminal condition now for almost 6 years, I've experienced friends dying of the same disease I bear. As an adult patient, I am able to pick up the phone and address my fears directly with my oncologist. Adult oncology patients have so many avenues to address the fear of dying: psilopcybin clinical trials, filling out Five Wishes (a multi-state advance care planning program that is free), support groups, therapists, death doulas. Yes, there is such a thing as a death doula and an international, accredited association: INELDA: International End-of-Life Doula Association.
While these are available at many adult hospitals, I've never seen them in any of the pediatric facilities I have worked.
Nonetheless, in the pediatric world, child life is in abundance. Children, who never arrive alone to the hospital, are met with a "buddy" who helps them feel supported, less anxious, and less alone. How sharply that contrasts with the adult world, where so many patients, many of them elderly, sit alone in waiting rooms of oncology clinics.
Greater cross-pollination is needed. Adult hospitals should have something like child-life for the millions of adults who face difficult hospital visits alone. And pediatric hospitals should have more education and resources about end-of-life. A simple start would be the introduction of a death doula.
When a family lives with a terminal condition it affects every member of the family. My own daughter, at the age of 12, expressed, "I want to have children when I'm young so I can be alive for their whole lives." We may not talk about it every day, but my children know that what I have is serious and likely to end my life. As hopeful as we want to be, talking frankly about disease and the possibility of death does not extinguish hope. Rather, it gives you a chance to live more fully. And for patients, it lets them know that you are standing there with them, even if the room should grow dark.
I would love to see our adult medicine colleagues at our pediatric conferences and vice-versa. Because, why shouldn't we learn from each other?
From Steven J. Weisman, MD, Jane B. Pettit Chair in Pain Management, Children’s Wisconsin Professor of Anesthesiology and Pediatrics, Medical College of Wisconsin
Thanks to PAAD for sharing the story of Dr. Sarah McCarthy and Molly. I think most of us have medical origin stories that link to various personal events in our lives. My journey was certainly influenced by my tiny Polish immigrant grandmother who began her “you will be a doctor” brainwashing sometime in my infancy. However, the most significant event in my arrival to medicine was the loss of my 11 yo sister to hepatocellular carcinoma when I was 15 and she (of blessed memory) was only 11 years old. Wendy died in our small apartment in Brooklyn, NY literally in the bed next to me in our shared room. I thought our pediatrician (my mom’s first cousin and a true holy trinity of medicine) did an amazing job of guiding us through her pain and suffering. Over the years, however, I learned that my parents suffered endlessly and were largely unsupported in the last months of her life. In 1968, home care for the dying child was not a thing and we were deserted with a big bottle of acetaminophen with codeine.
Things really changed in the 1970’s and 1980”s, when the suffering children experienced when either being treated for or dying from cancer became an area of medical necessity. When I entered pediatrics (1978), I remained true to my goal of helping children with cancer and walked many a family through experiences quite similar to what Sarah described. However, what I saw as a Pediatric Hematologist/Oncologist in the early 1980’s was widespread suffering for the patients and their families. There are too many leaders in Pediatric Pain, to name here, who emerged during that time who began a major shift in the approach and care of children in pain from malignancies. Most of the leadership came from Pediatric Anesthesiologists across the world.
Their inspiration and leadership, demonstrated through kindness, caring and professionalism revolutionized care for these children. It also motivated me to shift my career and join their ranks. Dr. McCarthy was spot on. We don’t take care for 11 year old females with hepatocellular carcinoma. We take care of Wendy’s (and Molly’s) who have families that love them. We all are taught this in medical humanities classes. Please, please, never forget. Be kind!
From Vanessa Olbrecht, MD, MBA and Lynn Martin, MC MBA
We read and enjoyed the PAAD “I’m Bored” posted on 12/19/2024 by Dr. Ethan Sanford. This was a topic well off the beaten path for us. In fact, we were quickly fascinated by the description of the differences between boredom proneness (the tendency to experience boredom more frequently and intensely) and state boredom (boredom induced by a lack of available activities or forced mundane tasks), the former associated with failure to engage in creative processes and action, poor mental health outcomes, rule-breaking, and poor well-being while the latter associated with increased creativity.1
The experiment described by Mann and Cadman2 where study participants were assigned to (a) standard activities, (b) copying lines from a phone book, or (c) reading from a phone book was quite interesting. The phone book readers performed better than the copiers or the standard group. Who thinks of experiments like these? Someone very creative and likely not suffering from boredom proneness! Personally (LM), I seek out periodic down time to disengage and let my mind wander; I find these moments to be some of my most creative and insightful. Another excellent point is the constant source of engagement we find ourselves in in this digital era. How often do we truly lack stimulation sufficient to allow our minds to wander? Perhaps this is associated with a tendency towards poor well-being and poor mental health outcomes.
The comments regarding the influence of standardized practice and protocols driving the loss of agency in medicine stimulated our reader response. Much of our current practices that are not protocol driven are often driven by dogma and a lack of evidence (i.e., tenets that physicians are expected to accept without any doubts). Particularly in pediatric anesthesia, many of our practices are derived from the adult literature and adult practices as our specialty is not as rich in data. As an example, we have been taught that opioids are a NECESSARY element for virtually every anesthetic as we strive to provide a balanced anesthetic. Fortunately, I (LM) was also taught by Myron to challenge dogma! Physicians must use their minds and not practice on blind faith… and of course, turn to data and the literature to drive practice whenever possible.
Lastly, we fundamentally disagree that standardization of clinical practice inhibits creativity and creates boredom. Standardizing the care processes reduces the random noise inherent throughout healthcare and ultimately enhances the opportunity to test ideas for improvement and easily detect signals (success, failure, or unchanged). Again, let’s look at opioids for tonsillectomies, having a standard with opioids (baseline) and then standard without opioids anesthetic was not only possible but maybe better.3 Did we treat this as a new dogma and let the protocol bring boredom into the system and seek no further improvement? No, we strive for continuous improvement! Eight years and 16 protocol changes later, we have, in fact, further improved our outcomes.4 The accompanying editorial suggests that opioid-free anesthesia is perhaps the new gold standard for healthy ambulatory tonsillectomies: “multiple PDSA cycles are well explained and feasibly implementable, and the data are reliable and sustainable in the long term”.5
So where do we think this lack of agency and boredom with the practice of medicine comes from? As stated by Dr. Stanford, “clear the clutter of meaningless activities in order to manifest state boredom.” How many of us can do this? Perhaps this would be a great experiment to try for 24 hours … or even one week. But we believe it goes beyond this. As we have all been forced to spend more time clinically, we have often lost the opportunity to engage in creative endeavors in the field: to pursue research, quality improvement activities, curriculum development, etc. In these areas is where our minds are given those opportunities to wander – to think creatively – and to pursue alternate passions. We must not conflate standardization of practice with boredom in practice.
Physicians need to challenge dogma and use their minds and data to continuously improve the standardized care that they provide to their patients and families every day and, from this work, our creativity in our work will be reignited.
References
1. Brosowsky NP, Barr N, Mugon J, et al. Creativity, Boredom Proneness and Well-Being in the Pandemic. Behav Sci (Basel) 2022;12(3) (In eng). DOI: 10.3390/bs12030068.
2. Mann S, Cadman R. Does Being Bored Make Us More Creative? Creativity Research Journal 2014;26(2):165-173. DOI: 10.1080/10400419.2014.901073.
3. Franz AM, Dahl JP, Huang H, et al. The development of an opioid sparing anesthesia protocol for pediatric ambulatory tonsillectomy and adenotonsillectomy surgery-A quality improvement project. Paediatr Anaesth. 2019; 29(7):682-689. DOI:10.1111/pan.13662.
4. Chiem JL, Franz AM, Hansen EE, et al. Optimizing pediatric tonsillectomy outcomes with an opioid sparing anesthesia protocol: Learning and continuously improving with real world data. Pediatr Anesth, 2024; 34(11):1087-94. DOI.org/10.1111/pan.14979.
5. McDonnell C. We have come a long way, but I still have questions. Pediatr Anesth 2024; 34(11):1084-6. DOI:10.1111/pan.14988.
From Randall Flick, MD, MPH and David O. Warner, MD, Mayo Clinic
Football, wordsmithing and chasing ghosts…Today’s PAAD, authored by two of our friends, mentors, and colleagues, is a reprint of a previous PAAD from last summer. The Title; “Neither a single nor repeated brief exposures to general anesthesia in young children is likely to be associated with poorer neurodevelopmental outcomes compared with no or fewer exposures” at first seems to make a definitive statement regarding the large body of both preclinical and clinical data surrounding the challenging and important issue of the long term effects of commonly used anesthetics on the developing human brain. However, with a second reading the term “likely” becomes exceedingly difficult to miss.
So, does this mean that the probability of adverse neurodevelopmental consequences of early anesthetic exposure may be as great as 49%?
If so, this should a source of enormous concern rather than reassurance. I suspect that Dr’s Sun and especially Dr. Yaster meant to convey something else and may in retrospect word smithed the title a bit to include an adjective or two adding emphasis to the negative view expressed in the title. As it stands, we certainly would not disagree with the premise of the title nor would almost anyone who has been engaged in the hard work of creating the large and growing body of excellent albeit flawed data that are somewhat selectively highlighted in today’s PAAD. We have in the past made it a point to caution against both overinterpreting or dismissing the available data (Flick, Warner Anesthesiology 2012 & 2018; Paediatr Anaesth 2014; Lancet 2016) and will continue to do so.
Producing good research is difficult and requires hard work, diligence, and compromise as no model, no dataset and no trial is perfect. All are flawed, to one extent or another, nonetheless all contribute in some way to a body of knowledge that, over two decades, has transformed a question of public health urgency to one of research interest with potential public health consequence. This is something we are quite proud of as should be all those who have contributed to this effort.
Chasing ghosts and doing good research is hard work…opining from the sidelines is somewhat less taxing.
When one evaluates literature, it is important to avoid the error of choosing sides. Doing so leads to overt bias as reflected in the cherry-picking of data, over-emphasizing studies that agree with ones preconceived team view and underemphasizing those that do not. We do not have a team to root for nor do we have the time or space to review the large amount of data that consistently show subtle changes in behavior among those exposed both once and more than once. We direct the reader to the excellent meta-analysis by Ing et. al. (Ing et al. BJA, 2021). Caleb is a rock star and a protégé of Dr. Sun. To be clear, the cause of the observed changes and their significance remain uncertain. Their existence is not.
Choosing sides is good for football but not so good for evaluating research…
Let us end by pointing out a brand-new study by the GAS researchers that may be found on the Anesthesiology website as a preprint showing a dramatic reduction in IQ among those in the GAS study multiply exposed subsequent to their randomization but prior to assessment. When published, the study will no doubt be controversial and is certain to be accompanied by an exceedingly insightful commentary.