Latest / Becker’s Healthcare -- Pediatric Leadership Podcast / Advancing Ethical Care for Pediatric Feeding Disorders with William Sharp, PhD

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Advancing Ethical Care for Pediatric Feeding Disorders with William Sharp, PhD · Becker’s Healthcare -- Pediatric Leadership Podcast

• 0:00
  Welcome to the Becker's Healthcare Podcast. I'm Chris
• 0:02
  Sosa, your host. And I feel today to
• 0:04
  be joined by doctor William Sharp. He's director
• 0:06
  of the children's multidisciplinary
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  feeding program at Children's Healthcare of Atlanta, and
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  he joins us today to discuss the newly
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  formed National Center for Feeding Ethics. Will, thank
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  you for joining us today.
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  I appreciate the invitation. I'm excited to be
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  here. Fantastic. Will, would you mind giving us
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  a little bit more background on yourself and
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  Children's Healthcare of Atlanta, please? Sure. So start
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  with myself. I'm a clinical psychologist by training
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  with a focus in pediatric psychology,
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  which is a subspecialty area that sits at
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  the intersection between psychological and physical health in
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  children.
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  And what really attracted me to pediatric psychology
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  is the potential to have a transformational
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  impact on a child's life as it relates
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  to chronic, medical conditions.
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  I was further drawn to the subspecialization of
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  pediatric feeding disorder and the psychiatric diagnosis of
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  avoidant restricted food intake disorder or ARFID because
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  these diagnosis
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  diagnoses exemplify that intersection between the psychological and
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  the physical. In terms of children's, I joined
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  children's,
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  back in 2007.
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  So that is about I'm going getting close
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  to twenty years here, as a psychologist in
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  what was then a very small feeding program.
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  But what attracted me to the program was
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  how unique it was in many respects.
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  So first, the patient population that we work
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  with. Most of the children we work with
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  in the feeding program have complex medical and
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  developmental conditions
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  that make feeding difficult or, difficult or painful.
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  So instead of enjoying eating,
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  eating becomes a negative experience that to be
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  avoided, and this can lead to significant negative
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  outcomes like weight loss, malnutrition, and and in
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  some cases, the need for a feeding tube
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  to meet basic nutritional needs.
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  It it was it's also a multidisciplinary program,
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  and I know that multidisciplinary care is increasingly
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  recognizes a good standard for complex patients.
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  But this is a program where psychologists get
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  to work hand in hand with physicians, nurse
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  practitioners,
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  speech language pathologists, dietitians, social work, all under
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  the same clinical umbrella,
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  to really have life changing impact on patients
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  and families.
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  And then finally, we offer an intensive
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  model of care. We call it a day
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  program.
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  Your listeners might be more familiar with something
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  called an intensive outpatient program. But the this
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  is a program where kids come to us,
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  for four meals a day, five days a
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  week for up to two to three months,
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  and they live with us. And by live,
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  I put it in quotes because they do
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  go home at the at night and and
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  stay somewhere, but we're able to, you know,
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  really
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  change their trajectory of their life in a
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  very short period of time. That that sounds
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  like excellent and fulfilling work, Will. I'm glad
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  you gave us a little more insight on
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  what this is because, yeah, most people, we
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  just think about eating, and it's just something
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  we do. It's something we enjoy. But
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  to to be a child and not enjoy
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  that, that that's just
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  heartbreaking to be sure. Will, can you let
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  us know what age groups are you generally
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  dealing with about whether it's the outpatient program
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  or or any of the programs you have
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  down there in Atlanta? Yeah. That that's a
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  great question. So we the youngest patients we
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  will treat in our program is nine months
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  old. And so these are patients who are
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  born
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  oftentimes with prematurity or other medical complications that
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  make feeding painful or really impossible. So a
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  lot of our kids might come into the
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  world and start on a g tube, and
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  our goal is to help them reestablish a
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  wound intake at that that young of age.
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  We go all the way to 21.
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  So, you know, in any day in our
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  clinic, you can have, you know, nine month
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  olds,
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  you know, walking in hand in hand, not
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  walking, but but in the same clinic as,
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  like, a 21 year old. But the overarching
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  condition that we're working with is the psychiatric
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  condition called ARPID, like I mentioned earlier, where
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  this negative association with food has occurred for
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  some reason.
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  And instead of eating being pleasurable,
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  they they they're starting to reject and avoid,
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  food overall. And so in terms of our
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  patient population, it it can vary, but anybody
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  can develop that negative association at any time.
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  Fascinating to be sure.
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  Let's get into the National Center for Feeding
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  Ethics in particular.
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  How did that
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  elements of children's health care of Atlanta? How
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  did that evolve?
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  And why did you think that now why
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  do you believe, you and your colleagues that
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  is, that this is the right time to
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  launch that? Yeah. Right. Great question. So the
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  Center for Feeding Ethics represents a collaboration
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  between Children's Healthcare Atlanta and, you know, we
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  are one of the largest multidisciplinary feeding programs
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  in The US.
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  And we're partnering with Feeding Matters, which is
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  a global, leading nonprofit that focus on advancing
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  system wide change for children and families with
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  chronic feeding issues.
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  And our you know, as a national initiative,
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  we're dedicated to exploring the ethical challenges in
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  feeding disorder care and developing guidance to ensure
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  that treatment is safe, compassionate, and grounded in
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  best practices.
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  The reason we're doing it so how did
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  this come about and why do we think
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  it's now?
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  It involve
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  the the concept behind the center evolved based
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  on a few different lines of work.
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  First,
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  we increasingly
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  are hearing about the lived experience of patients
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  and families,
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  and this lived experience involves
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  encountering a a broader health health care ecosystem
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  that's unprepared to effectively identify and treat
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  food restriction in pediatric population. So, you know,
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  the the health care system is not really
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  built for these type of patients.
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  At the same time, we we it it's
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  well recognized that there's high variability in the
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  quality and availability of treatment throughout The United
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  States.
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  Our best estimate is that there are there
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  are let probably less than 20 multidisciplinary programs
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  offering this intensive model of care. More commonly,
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  patients are receiving single discipline care from providers
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  who are teaching themselves how to do treatment
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  because there's no standardized training pathways for clinicians
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  seeking competence in feeding disorder assessment and management.
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  Finally, there's no unified ethical guidelines across disciplines
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  to guide the provision of care. So,
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  and there's also different camps of clinicians that
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  are kind of at odds in in their
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  and so that you have this splinter treatment
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  landscape for families.
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  I wanna add
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  that
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  ARFID as a psychiatric condition
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  is one of the is very common. So,
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  the prevalence is extremely high.
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  Our best guesstimate is that five percent of
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  paid, children have ARFID. So if you're kinda
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  doing a classroom, like, analysis, one out of
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  every thirty kids sitting in a in a
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  classroom would have ARFID.
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  If you extrapolate that to the actual unmet
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  need, we're looking at more than a million
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  kids in United States who needs to get
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  access to evidence based care.
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  And and we you know, from our data,
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  we know that about a thou less than
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  a thousand kids are accessing evidence based care
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  for in from an intensive multidisciplinary standpoint.
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  I'm curious,
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  Will. So as someone who deals with the
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  psychological
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  aspect of our faith and other, you know,
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  feeding disorders,
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  when you're without giving us the entire
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  spectrum of treatment, just curious, like, when you're
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  treating a child,
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  how do you go about
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  making them more comfortable,
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  with food and
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  improving their their outlook toward it?
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  Right. Right. That's a great question. So the
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  first thing we wanna make sure whenever we
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  work with a patient with ARFID or any
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  other type of feeding disorder in young children
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  is we wanna make sure that that they're
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  not continuing to experience pain. So we we
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  do a thorough medical evaluation where we, you
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  know, do a head to toe,
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  physical, examination to make sure there's nothing along
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  the GI tract that be that be could
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  be causing pain or discomfort.
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  But once they're they're cleared, from a, medical
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  standpoint,
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  we also wanna make sure that there's no
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  safety concerns. So a lot of our kids,
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  they don't have any experience eating food, and
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  so they're they might not know how to
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  chew at all. I mean, we I was
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  just sharing a story about a young boy
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  who came to me who he was five.
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  He had severe food allergies, but he only
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  drank from a bottle, and he had never
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  actually used utensils or chew chewed before.
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  And so you wanna make sure that you
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  you you understand the skill based concerns. You
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  you understand the medical concerns. But then once
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  once you're cleared,
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  with those two, the psychological intervention is is,
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  at its core, exposure therapy. So these are
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  the learning that has occurred with these patients
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  is that they've learned food is harmful and
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  painful and something to avoid.
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  And our job
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  is to drive a hedonic shift where where
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  children start to learn that food is not
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  something to be fearful of. Food is something
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  you can enjoy, and we do it very
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  slowly, very systematically. And that's why having them
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  here in a dose of treatment that allows
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  us to do multiple therapeutic meals a day
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  over the course of months can have such
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  a large impact because, you know, most psychological
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  interventions are one time a week with, like,
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  you know, some exposure therapy. We're doing exposure
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  four times a day for forty minutes at
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  at a meal.
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  Gotcha. Thank you for for sharing that.
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  Will,
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  as the the National Center for Feeding Ethics
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  advances its efforts, let's say, how do you
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  think that you and your colleagues will measure
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  how successful it is? Yeah. So we we
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  have some goals. Our major goals, there's really
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  five of them.
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  We wanna better understand current care practices.
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  So we need to better understand the benefits
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  and limitations of other care pathways, including my
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  own care pathway,
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  and really seek to
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  eliminate
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  or, you know, identify ineffective and and harmful
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  practices so that patients can be better informed.
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  Right now, in the in the current, landscape,
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  parents are having a hard time differentiate where
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  they should go and who they should see.
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  And, you know, if they're lucky enough, and
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  I'm I'd like to think that they'd be
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  lucky enough to land in a multidisciplinary program,
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  they they oftentimes tell a story of being
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  lost and not knowing who to go to
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  because there was there was nowhere to go.
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  Related to that, we wanna elevate the lived
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  experience.
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  We wanna integrate the patient and family voices
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  into our research and into our training, into
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  our care model so those voices are heard.
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  That that sense of being lost is better
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  understood,
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  and we start to really shape a new
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  experience for those families.
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  We also hope to build consensus.
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  We wanna bring together clinicians, researchers, and advocates
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  to guide, you know, a better future of
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  care, on on a national level. And fourth,
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  we wanna promote compassionate care. We wanna encourage
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  treatment approaches that are trauma informed, respectful,
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  patient family centered, and evidence based. And then
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  the final deliverable in all of this will
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  be developing ethical guidance for care.
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  And we hope to do that by working
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  across disciplines to define what treatment should look
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  like.
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  And the the goal so, ultimately, if we're
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  successful,
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  success will be measured if we improve the
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  health care ecosystem so that that families receive
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  the right care from the right
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  right provider,
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  ideally well trained provider,
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  at the right point in time. And this
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  is in contrast to the current state where
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  families report, you know, confusion
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  and not having a a a really good
• 10:50
  sense of how they should navigate the health
• 10:51
  care ecosystem.
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  Well, it sounds like you and your colleagues
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  are well on your way to building a
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  a wonderful partnership, not only with,
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  all the colleagues you have at at the
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  center, but with the families who are, you
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  know, coming to you for help.
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  As other leaders look to maybe undertake similar
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  efforts, I mean, hopefully, yours is
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  wildly successful, and it it looks
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  to find, other ways to to help children
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  across the country.
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  What advice would you give to other leaders
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  who might be looking to follow in your
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  footsteps?
• 11:22
  Yeah. So I I think the first piece
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  of advice I would give is, you know,
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  build a solid team.
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  And that requires finding the right team members.
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  We're so lucky to not only build on
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  the strengths of the feeding program at Children's
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  Healthcare Atlanta, but, you know, to have also
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  found such amazing partners such as John, Lysacker.
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  So he is the director of the center
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  for ethics at Emory University. That's gonna be
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  our, you know, walking hand in hand with
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  us with this work.
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  So, yeah, finding the right team. I'd also
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  you know, if you're really trying to do
• 11:52
  something that is gonna hopefully lead a system
• 11:54
  level change,
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  be bold. You know, paradigm shifts require shaking
• 11:59
  up complacency
• 12:00
  and at times making people uncomfortable.
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  And so, you know but at the same
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  time, while you're creating that that that that
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  feeling of discomfort,
• 12:09
  you also have to create a a shared
• 12:10
  understanding that the ultimate goal is to improve
• 12:12
  the system of care. So we're all on
• 12:14
  the same team.
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  We're just not might not be talking to
• 12:17
  each other the right ways yet.
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  Finally, I would, you know, suggest being willing
• 12:22
  to listen and learn. My leadership style has
• 12:24
  evolved over the years. And while I don't
• 12:26
  ever think I'll be a leader who completely
• 12:28
  leads from the back, I've moved I've moved
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  away from completely leading from the front and
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  taken the position of being a curious leader
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  who is comfortable with with ambiguity.
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  Well, hopefully, the steps that you and Children's
• 12:41
  Healthcare Atlanta are taking to one, be bold,
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  but two, listen to each other, lead to
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  many great things.
• 12:47
  Will, thank you so much for sharing all
• 12:49
  the wonderful details about the National Center for
• 12:52
  Feeding Ethics. I mean, we love that you're
• 12:53
  on the show today, and we can't wait
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  till the next time that our paths cross.
• 12:58
  Alright. Thank you for so much for having
• 12:59
  me, today.