Latest / Becker’s Healthcare -- Pediatric Leadership Podcast / Reframing Pediatric Palliative Care Through Compassionate, Family Centered Support with Dr. Carla Cangemi

Transcript

Reframing Pediatric Palliative Care Through Compassionate, Family Centered Support with Dr. Carla Cangemi · Becker’s Healthcare -- Pediatric Leadership Podcast

• 0:00
  This is Laura Dirda with the Becker's Healthcare
• 0:02
  podcast. I'm thrilled today to be joined by
• 0:04
  doctor Carla Cangemi,
• 0:06
  vice president and chief medical officer at Saint
• 0:08
  Mary's Healthcare System for Children. Doctor Cangemi, it's
• 0:11
  a pleasure to have you on the podcast
• 0:13
  today. Thank you for having me.
• 0:15
  Absolutely. Now I'm excited for our conversation. I
• 0:17
  know we're gonna dig into,
• 0:19
  some of the different things you have done
• 0:21
  around your palliative care program and rebranding it
• 0:23
  as compassionate care. But before we do that,
• 0:26
  can you tell us a little bit more
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  about yourself as well as the hospital?
• 0:30
  Yeah. Sure. So I joined St. Mary's in
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  October
• 0:35
  2022.
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  And prior to St. Mary's,
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  I'm actually a board certified pediatrician and board
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  certified pediatric critical care
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  physician,
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  and I worked in acute care facilities for
• 0:47
  quite a bit and transitioned to a post
• 0:50
  acute care facility
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  here at St. Mary's.
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  That's amazing to hear. Now let's dig into
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  it. I know Saint Mary's recently rebranded its
• 0:58
  palliative care program as compassionate care. What inspired
• 1:01
  this change, and what can you tell us
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  about it?
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  Sure. So early nineteen eighties,
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  Saint Mary's designated palliative care units
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  here.
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  And then over the years,
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  they developed
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  certain levels of care and pathways.
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  And in 2025,
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  working with our
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  team here at Families,
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  palliative care
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  was something that families kind of, shied away
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  from.
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  They
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  heard palliative care
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  and thought, right away, preparation for death and
• 1:34
  dying.
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  And palliative care is more than that, not
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  just end of life. Right? It's providing
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  providing support
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  and comfort,
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  for families with children,
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  with lifelong limiting conditions, medical complexities.
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  So we thought the term compassionate care
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  was a friend friendlier term,
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  that we can present to families
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  to be part of, the program.
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  And we received,
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  feedback from actual staff and family members
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  who,
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  are now open
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  to learn more about the program.
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  That's really neat to hear and definitely such
• 2:17
  an important aspect of that care journey. I
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  know it's something that can be a challenge
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  to confront, but at the same time,
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  makes such a big difference if you have
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  that right time kind of care in place,
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  you know, to to make that time,
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  you know, really optimized and special. So can
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  you talk about how the term compassionate care
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  better reflects the philosophy and goals of the
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  program?
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  Sure. It's more of a a empathetic approach,
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  and
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  the term compassionate care
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  reflects all our levels, so we provide the
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  supportive care. So there's three levels that were
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  established in the past, and we added an
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  additional level,
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  which is level four,
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  for advance and continuous supportive care. So more
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  of end of life and hospice care.
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  But the level one through three provides different
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  levels of supportive care. So it's a multidisciplinary
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  approach
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  with a team from
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  each discipline. So
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  medicine is involved as well as nursing,
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  rehab,
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  and our complimentary care services such as our
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  recreation
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  department that provides music and art therapy,
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  aromatherapy,
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  massage therapy,
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  also,
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  spiritual
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  therapy
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  to not only the patient families,
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  but also to the siblings,
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  at any time during their journey here at
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  Saint Mary's.
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  Well, that's incredible. And I can imagine it
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  makes a big difference just for the whole
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  families as well as the patients that are
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  going through, some really significant
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  challenging
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  times. So, that that sounds like it'd be
• 3:57
  an amazing opportunity for them.
• 3:59
  Yes. And, also, we also implemented
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  a tool assessment.
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  So every patient upon admission
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  and throughout this their stay here, they'll have
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  an assessment
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  and based on their medical needs,
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  and they'll be classified in different levels.
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  And that is aligned to a pathway
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  of services.
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  And in addition,
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  we thought
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  to make it another way to be friendlier
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  with families and staff as well
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  is
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  to, apply a animal character
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  to each level. For level one, being a
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  teddy bear, level two being,
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  you know, a rabbit, level three being a
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  turtle, and level four
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  for end of life
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  patients being a butterfly.
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  So instead of being referred to as a
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  level and a number, it would be a
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  character
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  just to find some ways of comfort and
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  peace
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  at every stage of that level.
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  It's such
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  a important point and definitely makes a lot
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  of sense. And thank you so much for
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  sharing inside of the program a bit. I
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  appreciate it.
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  What are some of the common misconceptions
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  that families have about palliative care and how
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  does the compassionate care help reframe
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  the understanding?
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  Like I said previously, the feedback that we
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  receive from families is palliative care equals, like,
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  end of life death and dying.
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  And it's not about just that. Unfortunately, at
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  times during the journey of the child's life,
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  it might lead to that. But early on,
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  they might have this lifelong
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  chronic illness,
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  but necessarily
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  not
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  near end of life.
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  We can prepare families for that time, give
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  them the opportunity and space to ask questions,
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  and help them
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  along their journey to discuss legacy building,
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  how to speak to the siblings
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  about their condition.
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  So we found that
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  the compassionate
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  care term,
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  allows parents,
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  to
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  embrace
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  their child's illness,
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  what to expect.
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  But more so, we wanna provide support
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  to families that we are here,
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  at any time
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  they want
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  to discuss
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  any decisions they need to be made along
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  their child's
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  journey or when there is a clinical change
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  and decisions need to be made.
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  That's helpful to understand and definitely makes a
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  lot of sense when you're thinking about all
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  the different
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  patients and individuals that could be part of
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  the program and where they're at in their
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  individual journeys as well.
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  The program uses multidisciplinary
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  and holistic approach, and I've talked about that
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  a little bit already, and it can include
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  some complimentary therapies.
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  What impact does that have on the quality
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  of life for these patients?
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  Oh, it improves their quality of life tremendously.
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  It's not just the
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  medical and nursing care that we provide every
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  day,
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  but it's also
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  the comfort care such as, you know, massage
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  therapy
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  and having that the patients receive
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  that, gentle touch and soothing measures or aromatherapy
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  targeting their senses of smell
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  or
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  music,
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  the music therapy or art therapy.
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  So it's more of a holistic approach as
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  well embedded to the
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  clinical approach.
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  Fascinating. And,
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  I can appreciate
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  the ability to have that type of holistic
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  approach,
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  because, you know, it it takes time and
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  effort and intentional
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  resources to put into some of those things.
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  Why is it important that compassionate care can
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  begin with a diagnosis and then continue alongside
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  some of the curative treatment?
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  Well, I believe that,
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  having
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  that discussion early on and being transparent with
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  families
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  establishes
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  a,
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  secure relationship with them.
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  And we can,
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  develop trust, right, with the provider and the
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  parent and the team,
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  and making them feel comfortable so they know
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  they
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  they're looking for some comfort,
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  also looking for some peace
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  and providing some sort of hope.
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  And just knowing that we are providing
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  supportive care,
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  throughout their journey, I think it's extremely important.
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  Absolutely. And, you know, for other hospitals out
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  there who are thinking about
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  this type of program or
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  wanting to potentially
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  build something along these lines that's more holistic
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  than what they currently have,
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  for their patients.
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  What advice do you have or what are
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  some of the things that you've learned along
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  the way that would be helpful in constructing
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  a beneficial program like this?
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  So I think the most important thing and
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  I think what's what we implemented was a
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  tool assessment.
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  And that's something that we are sharing with,
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  other facilities
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  in and also other providers in palliative care,
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  because with the tool assessment, it's something that
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  we can assess
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  upon admission monthly, quarterly
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  depending on any clinical change and needs.
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  And actually showing
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  that to parents
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  helps them
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  understand,
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  the different changes
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  in their condition,
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  and it opens to,
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  a better understanding and communication with the provider
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  and the parent.
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  That is incredible advice and and definitely helpful
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  when you think about especially,
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  that the communication flow and aligning everybody's expectations
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  and understanding of what's next. Before we wrap
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  up here, I'm curious, how does compassionate care
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  support not just the child, but the entire
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  family emotionally and practically?
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  That's a great question because it's we always,
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  think about the child, but also
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  the families need the support.
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  So parents, especially children, the siblings
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  of the child.
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  We have created a sibling group. Our social
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  work department,
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  and our child life services
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  have developed different sessions allowing the siblings,
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  to spend a day,
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  different activities during the different seasons of the
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  year, spending time building memories
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  with their sibling. And this actually
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  helps,
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  you know, the family and the siblings
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  to understand
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  where
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  their
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  child and sibling
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  is at.
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  It allows that,
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  open up discussions for the siblings
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  to
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  ask specific questions regarding the diagnosis
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  or the needs of their sibling.
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  And this also also supports,
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  the families, like the parents or guardians,
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  because it's very challenging
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  to
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  have those crucial conversations,
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  with siblings, especially
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  if they're,
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  much younger,
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  and they'll truly understand. So it's a safe
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  space,
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  and our social workers are experienced in this
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  area.
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  That's amazing to hear.
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  I I really appreciate your time today, doctor,
• 11:26
  Kimjemme, and I look forward to connecting with
• 11:28
  you again soon.
• 11:30
  Great. Thank you so much.