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Palliative vs Hospice Care with Suzanne O’Brien | The Eye Believe Podcast · The Eye Believe Podcast

• 0:00
  okay you guys
• 0:00
  welcome back to the Eye Believe Podcast
• 0:02
  we have Suzanne O'Brien
• 0:03
  who is a registered nurse from Saint Petersburg
• 0:06
  Florida and I'm gonna go ahead and let you just kind of
• 0:08
  tell us your history Suzanne
• 0:10
  if that's okay oh absolutely
• 0:12
  first of all thank you for having me
• 0:13
  and thank you everyone
• 0:14
  I'm a registered nurse by trade
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  and my background is in hospice care
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  which is end of life care
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  and or oncology care which is cancer care
• 0:22
  and from the moment that I worked in that space
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  I realized that we have huge gaps
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  not just in education and support
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  but even about talking about the natural
• 0:33
  sacred experience that end of life is
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  and then
• 0:35
  how it can go so much better for patients and families
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  and we we need to now bring that back
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  a hundred years ago it was something
• 0:43
  that a grandmother used to teach a grandchild
• 0:45
  end of life how we care for people
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  and literally
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  we've removed it almost entirely from our awareness
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  and it's causing end of life
• 0:53
  to be a thousand times more challenging
• 0:55
  so I developed trainings called doulas
• 0:58
  and we'll talk about that
• 0:59
  that is for the non medical
• 1:02
  holistic training for families
• 1:04
  for caregivers just so we can bring back this education
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  and I will tell you this
• 1:08
  that 80 to 90% of a better end of life happens
• 1:11
  when we talk about it and plan ahead
• 1:13
  and know what's available to us for support
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  so that is what I do um
• 1:18
  and I am grateful to be here with you
• 1:20
  well I so appreciate you joining us
• 1:23
  and for those of you who don't know um
• 1:25
  or haven't seen Suzanne's doula givers page
• 1:28
  or any of her stuff on Facebook
• 1:30
  I have followed her stuff um
• 1:33
  for a while like
• 1:34
  just her page her content
• 1:35
  and she has a ton of resources
• 1:37
  and we'll talk about a little bit more of that
• 1:39
  she has done a lot of videos
• 1:42
  she's very um
• 1:43
  just very open but I also feel like
• 1:45
  very sensitive to
• 1:46
  to what this journey looks like for people
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  and um
• 1:49
  she has a I think there's a community that you can join
• 1:51
  for caregivers or for yourself
• 1:53
  if you want to learn more about palliative care
• 1:56
  about just living well
• 1:57
  is what I've seen in these groups about just like
• 1:59
  living well through
• 2:01
  through anything that you're navigating
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  and of course
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  with a stage 4 diagnosis or with a cancer diagnosis
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  that can look different
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  let's talk about the difference between like
• 2:08
  what is palliative care and what is hospice care
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  yeah absolutely
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  so a lot of times they're grouped together
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  so you'll see palliative hospice care
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  and it really again
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  the word hospice almost right now
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  has this entirely fear based and negative connotation
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  there's several reasons for that
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  but the main reason is this
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  is that people know it means death and dying
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  and they don't wanna go there
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  because death is our number one fear in this world
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  which by the way
• 2:37
  I just have to share with you
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  I've been doing this a very long time
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  and for something that's 100% guaranteed
• 2:43
  as part of our journey for all of us
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  for it to be the number one fear in the world
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  how did that happen
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  and it really is only in the last hundred years
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  and I really had to study this
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  you know being that practitioner at the end of life
• 2:55
  hospice nurse oncology nurse
• 2:57
  when people would get diagnoses that would
• 3:00
  you know put them right in that space
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  of thinking about the end of life um
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  it's so much more difficult
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  and the fear just just comes about
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  and I always try to say what is the fear
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  and I understand we don't wanna rush this
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  we don't wanna get there
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  but when we don't know the support
• 3:19
  the availability what life's about
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  really what makes a beautiful end of life um
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  we can't have that accomplished
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  if we're not discussing it
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  and then and just to share with you all
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  that I have been privileged and honored
• 3:32
  to see
• 3:32
  some of the most beautiful end of life experiences
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  and this is why my platform was built
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  to give those elements
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  what I call the elements of what you need to know
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  as a family member as a person in this journey
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  that allow you to have that positive end of life
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  so for something that's 100% care
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  and I'm talking about 80 to 90% beautiful
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  um that's what we're talking about
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  that's what my experience is
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  and so I don't want us to be afraid of something that
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  maybe we can't even pinpoint
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  what is that fear and that's one of the big questions
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  so going back to palliative and hospice care
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  is that palliative means symptom management
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  so it means that this this disease
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  process or condition can't be reversed
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  so it can't be reversed by a treatment or a surgery
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  but it means that we can do tight
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  what I call tight symptom management
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  which by the way
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  with tight symptom management
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  I have seen people do better
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  in the last six months of life
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  than they have in 30 years
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  and that's really important
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  the longer we're living now
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  and our lifespan has never
• 4:39
  we've never seen this aging population
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  and this demographic
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  we are going to have issues happen physical cognitive
• 4:49
  financial and so
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  we need to know what we can do for that high quality
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  every single day of living
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  and we can get it really high
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  when we share the tools of how to do that
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  so palliative means it can't be reversed
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  but we can have comfort care and symptom management
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  and hospice means that end of life care
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  and again it applies to
• 5:09
  the goal is to have symptom management so tight
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  that every single day is at the highest quality
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  for as many days as we have
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  and I believe
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  all of us should live our every day that way
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  with that yeah
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  no I love that
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  and I think that that's
• 5:23
  that's such a nice way to break it down um
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  and to just kind of establish like
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  like yes
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  they are related but also yeah
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  they're separate in some ways
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  like they absolutely
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  they have their own unique purpose
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  the more that we see this aging population
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  and family caregivers needing that support
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  of what can we do we honestly
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  have to really understand what palliative care is
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  how it is not hospice because
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  we want our loved ones to have the highest quality
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  so palliative care will become more and more
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  I think
• 5:51
  a part of all of our journeys as this aging demographic
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  uh progresses
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  mm hmm yeah
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  so can we just talk a little bit about
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  like
• 5:59
  why is this beneficial to the patients and families
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  obviously like
• 6:02
  we want I think we've kind of covered a little bit
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  maybe to the patient um
• 6:06
  but why is this helpful to families
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  like the caregivers of these patients who
• 6:10
  you know are
• 6:10
  are seeking or needing that palliative or hospice care
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  yeah so we love our loved ones
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  we love our family members
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  and I think sometimes we feel incredibly helpless
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  when someone's going through an illness
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  and I wanna say this
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  that it is almost equally as intense
• 6:27
  for that main caregiver as it is for the person
• 6:30
  going through it very different journeys
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  but all but you know
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  when we are caring for people
• 6:35
  we care for not only the patient
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  but all the loved ones as well
• 6:38
  and so we want to bring back education and tools
• 6:42
  to support the caregiver
• 6:45
  to be able to know what they can do
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  so it's an empowering moment to help their loved one
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  that's in this situation and what I found as a nurse
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  unfortunately and I think this is not news to anyone
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  is that our medical system is broken down
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  and fragmented and the amount of actual bedside time
• 7:02
  that medical practitioners have with patients
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  is so minimal
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  as a hospice nurse
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  I was there for one hour once a week in the home
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  one hour once a week
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  there are huge gaps right now
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  because of the reimbursement structure
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  and so what I did about 16 years ago now
• 7:19
  is go to my hospice CEO and say
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  these ends of lives
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  are not going as well as they could go
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  and I'm being very gentle when I say that
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  and the concept of hospice
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  is that the hospice nurse
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  is supposed to teach the loved ones
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  the family member how to care for their dying loved one
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  there's not enough time it's not happening
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  what about if I develop this training
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  which I have here for you
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  three phases of end of life
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  interventions that the family can use
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  in each one of those phases
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  and we can teach them ahead of time
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  and they can have it in its completion
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  and he said this is great
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  we can't do it and I said why
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  he goes we won't get reimbursed for it
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  so I said okay
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  I'm just gonna go to the local library
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  give it for free and guess what happened
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  not a seat left in in the room
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  it filled up and so again
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  we want to make sure that we're filling the gaps
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  of what mainstream medical
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  at this time is not able to provide
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  and I want to remind us all of this
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  that death is not a medical experience
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  it's a human one and it's a holistic one
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  and a hundred years ago
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  a grandmother used to hand down this skill
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  to a grandchild this training
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  and you can take this for free
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  we're gonna share the resources at the end
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  is 90 minutes long
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  it has been used by almost 400,000 people
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  around the world with amazing success
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  and so today this is still what doula gives us
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  our main initiative is that free training
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  it empowers families to feel grounded and centered
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  that they know what they can do
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  to care for their loved one
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  or know that what they're seeing
• 8:50
  is a natural part of the process
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  it allows for the highest quality of the day
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  it brings back the sacred experience of end of life
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  and it being natural completely changes everything
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  so that's
• 9:02
  that's what we need to do for patients and families
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  and just one more thing is that
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  nine out of 10 people say
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  that they want to be cared for at home
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  if they become terminally ill
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  and when and I
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  my hand is up with that we need to support patients
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  to be able to be at home with
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  supporting the families to know how to do that
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  because 98% of the hands on care
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  and hospice care is done by the loved ones
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  that's such a good point and I don't
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  I don't know that I have ever established
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  you know this level of knowledge myself
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  I am not the only one who maybe has
• 9:32
  like you said this maybe irrational fear around
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  just even talking about this
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  yeah and so I guess we could
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  let's just cover that like
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  why do you feel like there are
• 9:42
  there is a level of fear um
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  what do you see in in your
• 9:45
  in your practice yeah
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  people being afraid of even initiating palliative care
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  or hospice care absolutely
• 9:51
  and and this
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  this is probably if
• 9:53
  you know if we did three hours on
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  on fear this is probably
• 9:57
  one of the most important things we talk about
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  at this moment is
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  because
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  I was privileged to grow up in a medical family
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  so from a young age
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  I heard my parents talking about people who died
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  and people that were in surgeries
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  and so I knew that end of life
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  was a part of our journey
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  even if it wasn't being directly told to me
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  children absorb
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  and when I got into the hospital setting
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  and people were dying and it was so fearful
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  and I thought what happened
• 10:22
  you know what happened
• 10:23
  you know how would
• 10:24
  how did it get get like this
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  and then I was being called to go to hospice
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  I was having this heart guidance called to hospice
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  and I thought for sure in hospice care
• 10:33
  we would be talking open about it
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  it would be better
• 10:35
  we would have time with our patients and all of that
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  and it wasn't better and so for me
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  immediately I had to say and I saw things done
• 10:43
  and I think we can all relate to this
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  especially in the oncology
• 10:46
  when I was an oncology nurse
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  when people would get the terminal diagnosis
• 10:50
  their cancer spread you know
• 10:52
  um and again
• 10:53
  I think
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  a lot of the language we use in the medical profession
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  needs to be looked at and changed
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  saying I'm sorry
• 11:00
  there's no more I can do for you
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  when somebody has a terminal diagnosis
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  is absolutely false
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  there is so much that we can do for people and
• 11:10
  and I think we've built this fear bubble around
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  end of life in a few different ways
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  number one removing it from our awareness
• 11:20
  so you know
• 11:21
  cause I've studied this I said
• 11:22
  how did we get here by the way
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  we've been dying for thousands of years
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  we know how to do this it's only in the last 100
• 11:28
  so I think it's this like
• 11:29
  trifecta of what happened is number one
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  in the last hundred years
• 11:32
  we have made major medical advances
• 11:34
  and we are able to keep people alive
• 11:37
  and we've taught the doctors how to do that
• 11:40
  and we can do that well
• 11:41
  but keeping people alive and living
• 11:44
  are two very different things
• 11:46
  and we actually treat our doctors right now
• 11:48
  that if their patient dies
• 11:50
  they failed
• 11:52
  and I've seen doctors walk down the hallway
• 11:54
  their 99 year old patient
• 11:55
  who's had cancer for you know
• 11:57
  a year finally died with their head down
• 12:00
  like they failed that is one part of it
• 12:02
  second is we don't
• 12:04
  we don't see aging and end of life like we used to
• 12:08
  you know our
• 12:08
  our loved ones live in institutions in different states
• 12:11
  and you might get a phone call that
• 12:13
  Nana's in the hospital or that she had her end of life
• 12:15
  it's not really real anymore
• 12:17
  we don't see that and this fear has completely uh
• 12:22
  developed you know
• 12:23
  from the language that we use
• 12:25
  and the and the
• 12:26
  we don't even really as medical practitioners
• 12:28
  give that option
• 12:29
  which is really what I want to talk to you about
• 12:32
  about your empowerment your knowledge
• 12:34
  and you making subjective decisions for yourself
• 12:38
  because you're unique
• 12:39
  and everyone's gonna have a difference of that
• 12:41
  but as a medical professional
• 12:43
  I wasn't even seeing in these moments
• 12:46
  I wasn't even seeing you know
• 12:47
  you have choice a choice B
• 12:49
  and choice C I was seeing that
• 12:52
  they got a diagnosis of terminal cancer
• 12:55
  or cancer that was advanced
• 12:57
  that it was a panic across the board with the family
• 13:01
  because of this fear
• 13:03
  and I also saw people do procedures and things
• 13:06
  that were never gonna reverse the quality
• 13:09
  or the condition of that disease
• 13:10
  and that caused them a lot more harm
• 13:13
  and that is heartbreaking
• 13:15
  so I want to say this that for a part of our journey
• 13:18
  end of life
• 13:19
  that we'll all be experiencing with ourselves
• 13:21
  with those we love
• 13:23
  is that we need to decide for ourselves
• 13:25
  what quality of life means
• 13:27
  to me and when is the time
• 13:30
  when is that in my journey
• 13:31
  where I wouldn't want things done to extend my life
• 13:35
  if there's not quality there
• 13:37
  and then of course
• 13:38
  bringing in the beautiful end of life experiences
• 13:42
  what people have said at the end of life
• 13:43
  so that we can bring it back into the natural
• 13:45
  sacred experience that it really is
• 13:48
  that does it need to be feared or it
• 13:51
  or have we just developed this bubble
• 13:52
  for whatever reason that is making end of life
• 13:55
  a thousand times harder for all of us
• 13:57
  I've followed a
• 13:58
  a wife of someone who is in our community
• 14:01
  and we've actually had her on
• 14:02
  Emily Bingham she's a
• 14:03
  a grief uh
• 14:04
  I guess you would call her a grief coach
• 14:06
  and she's a widow
• 14:07
  and she specifically works with other widows
• 14:09
  and she's got a fantastic course
• 14:11
  and she um
• 14:12
  really just took her experience
• 14:15
  and has transformed both herself
• 14:17
  and
• 14:17
  also been able to transform the experience of others
• 14:19
  and it's been beautiful to see her do that
• 14:21
  but one of the things that she's talked about
• 14:23
  is this idea that in our world
• 14:24
  a we don't talk about dying enough
• 14:27
  and B we don't talk about grief enough
• 14:29
  like that just this idea of what does grief look like
• 14:32
  and that there's this anticipatory grief
• 14:34
  that happens when you know the end
• 14:36
  you know the end is coming whether
• 14:37
  whether it's for your sweet little cat
• 14:39
  that you've had for 20 years
• 14:40
  and you know that they're
• 14:42
  they're close to dying
• 14:43
  because of whatever symptoms they're presenting or
• 14:45
  or because somebody you know
• 14:48
  passed away suddenly in you know
• 14:49
  a car accident or just a sudden
• 14:51
  tragic accident
• 14:52
  it doesn't matter how this death happens
• 14:54
  this loss happens but that grief is there
• 14:56
  and I think that when we avoid feeling the grief um
• 14:59
  what she talks about
• 15:00
  is that idea that when we're avoiding feeling
• 15:02
  and recognizing and honoring that grief
• 15:04
  it makes the fear of the rest of the experience
• 15:07
  the loss itself that much bigger
• 15:10
  yeah let's roll this back for a minute
• 15:12
  cause I think this is really important
• 15:13
  what you just shared about grief
• 15:14
  but first of all I just want to share with you that
• 15:16
  when we're talking about death
• 15:18
  we are talking about life
• 15:19
  they're not exclusive of one another
• 15:21
  yeah because I have never lived more fully
• 15:25
  than when I started
• 15:26
  be working with those at the end of life
• 15:27
  as a hospice nurse why
• 15:29
  because your level of gratitude
• 15:32
  of everything in your life completely changes
• 15:35
  in the best way possible it's no longer oh
• 15:39
  I have to go to the gym I get to go to the gym
• 15:42
  it's no longer I have to go to the grocery store
• 15:44
  I get to go to the grocery store
• 15:45
  like things just change the
• 15:47
  the moments the sunshine on your face
• 15:49
  like everything changes
• 15:50
  and that's a very important part
• 15:53
  because at the end of life
• 15:54
  you know for my patients
• 15:55
  and I've been honored to be with over 1,000 people
• 15:57
  at the end of life they
• 15:58
  they know that death
• 15:59
  is the number one fear in the world
• 16:01
  however I really feel for my patients
• 16:03
  that it was not so much the fear of death
• 16:06
  as it was the regret that they did not live
• 16:11
  that they did not take each day and live it like
• 16:14
  what I call one little lifetime
• 16:16
  and really share the gift of loving
• 16:19
  and of whatever gift they brought into this world
• 16:22
  because they just thought they had time and
• 16:25
  and we just don't know
• 16:26
  so let's talk about grief for a moment
• 16:28
  right now I think we are stuck
• 16:30
  and we see this global epidemic of grief
• 16:35
  really traumatic grief
• 16:37
  and I want to say this to you with so much love
• 16:39
  that my my understanding and belief system is
• 16:42
  that we have so much traumatic grief
• 16:45
  is because we are not talking about end of life
• 16:48
  because I see it
• 16:49
  when people have the relationship with end of life life
• 16:54
  the the wisdom of what this experience is about
• 16:57
  living in that graceful presence in the day
• 17:01
  when we get to the end of life
• 17:03
  the grief is completely different
• 17:05
  it can be healed and so right now
• 17:07
  people are stuck because end of life shows up
• 17:09
  which 100% it will
• 17:11
  it's really a train wreck for everyone
• 17:13
  the person dies they're stuck in that horrible
• 17:18
  intense memory and container of what it is
• 17:21
  and there's nowhere for it to really go
• 17:23
  so you said right
• 17:24
  we have to be able to feel the grief
• 17:26
  but
• 17:27
  we are suffering from such levels of trauma and grief
• 17:31
  right now
• 17:32
  because we're not talking about end of life education
• 17:35
  and the natural experience that it is
• 17:37
  that's a really good point yes
• 17:38
  that idea that if we're not
• 17:40
  if we're not learning about the experience
• 17:42
  I mean yes
• 17:43
  you know when
• 17:43
  when you have I mean
• 17:44
  just to draw this parallel
• 17:46
  when you have a baby you go to birth class right
• 17:49
  absolutely most
• 17:50
  most most couples will attend
• 17:52
  at least a single or a series of birthing classes
• 17:56
  where they learn about
• 17:56
  what is this experience that is birth
• 17:58
  yeah um
• 17:59
  that's how life begins
• 18:01
  it would absolutely make sense that
• 18:04
  like you said historically
• 18:05
  that that used to happen
• 18:06
  that there used to be some level of class almost
• 18:09
  where we Learned about what is
• 18:11
  what is the end of life look like
• 18:12
  what is you know
• 18:13
  what is this sacred experience
• 18:14
  like you said yes
• 18:15
  it it doesn't have to be this thing
• 18:17
  that we're so afraid of but I think that
• 18:20
  I don't know I guess
• 18:21
  I guess as as a patient myself I
• 18:22
  I think about sometimes that
• 18:24
  you know
• 18:24
  maybe that fear comes from worry that my family members
• 18:27
  well not even for
• 18:28
  for me that was
• 18:29
  it was worry that my family members
• 18:30
  wouldn't be able to handle me being gone
• 18:33
  yeah and
• 18:34
  and that is something I can't control
• 18:36
  regardless of how much I try to teach my family members
• 18:38
  like they will have to cope
• 18:40
  they will have to do that
• 18:41
  but like you said this
• 18:42
  this level of empowering our family members
• 18:45
  empowering ourselves as patients
• 18:47
  with this knowledge of end of life care
• 18:49
  and hospice and palliative care
• 18:51
  and how they can help us
• 18:52
  that's something that's not something to be feared
• 18:54
  really that's
• 18:55
  that's information and knowledge that
• 18:56
  I feel like we could we could say is
• 18:58
  is exceptionally empowering
• 19:00
  um and I think that yes
• 19:01
  I mean I
• 19:02
  I see that in how you talk about it
• 19:03
  and I imagine any of the patients that
• 19:05
  well to be honest I
• 19:06
  I would imagine any of the patients who we
• 19:08
  if we tried to talk to them
• 19:10
  they would probably be like
• 19:11
  I'm too busy living my life right now
• 19:13
  to talk to you about this
• 19:14
  but generally like you know
• 19:15
  like that they would they would say they feel that what
• 19:19
  I have chills cause so many things just like
• 19:21
  came in when you were talking
• 19:22
  like across the board
• 19:24
  and we had this one beautiful woman
• 19:27
  Jodie Stockhammer and she was stage four on hospice
• 19:32
  and I was doing an interview with her
• 19:34
  and she was running she
• 19:36
  and this was early in the morning
• 19:37
  she runs in and she's like
• 19:39
  I'm so sorry I was late cause I was doing this and that
• 19:41
  the other thing she talks about
• 19:44
  never having more joy and love in her life
• 19:48
  until this stage symptom management
• 19:51
  but her heart broke open
• 19:52
  she Learned about life so much in it
• 19:55
  she Learned about letting go and forgiveness
• 19:58
  talking about end of life education
• 20:00
  teaches us how to live
• 20:02
  it is our greatest teacher about how to live
• 20:05
  and the fact that we've removed it
• 20:08
  Denay I feel like
• 20:09
  is directly related to the chaos
• 20:10
  in which we see in the world
• 20:12
  I mean let's bring the sacredness of this whole
• 20:14
  journey of humanity back yeah I
• 20:17
  I love I love how you talk about this like
• 20:19
  and I like this idea that it is
• 20:21
  it is very much a human experience yes
• 20:55
  so um
• 20:56
  let's let's kind of
• 20:57
  get back to this idea of a stage 4 diagnosis
• 21:00
  right sure we
• 21:00
  we know historically in
• 21:02
  in a conventional medicine
• 21:04
  you know in
• 21:04
  in those terms stage 4 typically means they expect
• 21:08
  they expect end of life will happen
• 21:10
  due to this diagnosis
• 21:12
  they can't guarantee that it will or will not because
• 21:14
  right they can't see the future and um
• 21:17
  but in our community often times
• 21:19
  you know when patients are diagnosed with their eye
• 21:21
  that's the primary diagnosis
• 21:23
  and then we talked about this
• 21:24
  that it it then goes to the liver or the lungs
• 21:26
  and then you know
• 21:27
  from there can kind of go other places
• 21:29
  and when we're given that diagnosis
• 21:31
  most conventional or medical doctors
• 21:33
  would call that a stage four diagnosis
• 21:35
  so my question then is you know
• 21:38
  within the realm of the stage 4 diagnosis
• 21:40
  that happens especially for
• 21:41
  you know for us
• 21:42
  sometimes it it happens really early
• 21:44
  when there's very little stage 4 disease
• 21:46
  but it still is there
• 21:47
  and it's still very much a risk to your
• 21:49
  to your whole body um
• 21:51
  what's the best time for a patient
• 21:53
  to consider engaging with palliative care
• 21:57
  earlier rather than later
• 21:59
  and so what I want to say
• 22:01
  and so we we're talking about stage four and
• 22:03
  and I love that because it's so important to
• 22:05
  support people everywhere that they are
• 22:08
  but earlier rather than later
• 22:10
  I will tell you this
• 22:11
  that the earlier that you get that support
• 22:14
  with symptom management with choices
• 22:16
  the usually the better that whole process goes
• 22:19
  that whole end of life goes
• 22:21
  but I also realize this that
• 22:23
  because there is such a sting
• 22:25
  with talking about end of life
• 22:27
  and disease processes that when we are fearful
• 22:30
  and of course
• 22:31
  if somebody has an actual stage four diagnosis
• 22:33
  it's going to you know
• 22:35
  just be something that's so life altering and heavy
• 22:39
  it's very hard to have uh
• 22:41
  the understanding and the grounding to
• 22:43
  to learn and to absorb things
• 22:45
  so what I would share is that if possible
• 22:48
  let's talk about this ahead of time
• 22:50
  let's talk about different options but
• 22:53
  and so I really want to emphasize that
• 22:55
  but if we are at stage 4 earlier rather than later
• 22:58
  don't wait because when people wait
• 23:01
  which right now we're all waiting way too long
• 23:04
  is that I'm running in there as a hospice nurse
• 23:06
  and basically putting Band Aids on something
• 23:09
  I see it
• 23:10
  it's not going as well as it could go nearly enough
• 23:14
  so what we have is we actually have people now
• 23:17
  looking for their doula giver
• 23:19
  even ahead of time who's in their area
• 23:21
  I'm not even sick I had one woman who's 88 years old
• 23:24
  have me pay me to teach her children about end of life
• 23:29
  she's not even ill so that they were prepared
• 23:31
  just like you said Denay
• 23:33
  you're worried about your loved ones
• 23:34
  which most end of life people are
• 23:36
  they want to support their loved ones
• 23:38
  so it wasn't that I mean
• 23:39
  I think that's such a beautiful thing
• 23:40
  is that she had me sit with her family
• 23:42
  teach them let them ask questions
• 23:44
  have the plan in place so that they feel so empowered
• 23:48
  for something that they know one day
• 23:50
  not knowing when will show up
• 23:52
  so choosing ahead of time and knowing
• 23:54
  even dipping your foot into this
• 23:56
  and just asking some questions that are on your mind
• 23:59
  but just keep in mind that sooner rather than later
• 24:02
  later when we're actually in it
• 24:04
  the sooner you can do
• 24:05
  the better that end of life will go
• 24:07
  so can you just maybe give us a a
• 24:10
  just a handful of examples of some of the things that
• 24:13
  that palliative care can cover
• 24:15
  like we talked about symptom management
• 24:16
  so you know I
• 24:17
  I think I think
• 24:18
  most of us would understand what symptom management is
• 24:21
  but maybe give us a specific example in
• 24:22
  in the terms of maybe someone is experiencing pain
• 24:26
  okay so let me give you an example about pain
• 24:28
  so when we say palliative care
• 24:29
  I really have to do this as a disclosure is that
• 24:33
  don't assume that
• 24:34
  because you have palliative care on the case
• 24:37
  that all your problems are solved
• 24:39
  there's an active role in which caregivers
• 24:42
  play and patients as well
• 24:44
  in diagnosing what is the symptom
• 24:46
  making sure you're reaching out for help
• 24:48
  making sure you fill in the gaps
• 24:49
  of what's not available in mainstream
• 24:51
  because the medical team can only do their job
• 24:54
  when they know what's happening
• 24:56
  and when they're actually interacting with you
• 24:58
  so let me give you an example of palliative care
• 25:00
  I came on as a hospice nurse
• 25:02
  but this was her pain management
• 25:04
  this woman was so lovely she was 80 years old
• 25:07
  she had lung cancer
• 25:08
  stage 4 lung cancer that she was dying from
• 25:10
  two daughters just beautiful
• 25:12
  I came to her home to assess her
• 25:14
  and she said I have so much pain in my head
• 25:17
  it's a and I asked her
• 25:18
  on a pain scale zero being no pain
• 25:19
  10 being the most pain you could be in
• 25:21
  where is it hmm
• 25:22
  like an 8 7 8
• 25:24
  which is completely unacceptable
• 25:26
  so pain is should be at a 4 or below
• 25:28
  she was on I think it
• 25:30
  and if I remember correctly
• 25:31
  I think it was 80 mg of morphine a day
• 25:34
  which is a huge amount of morphine
• 25:35
  so she was already conditioned to that
• 25:37
  and her pain was still at a 7 and eight
• 25:40
  from my experience
• 25:41
  that's telling me that it's not a somatic pain
• 25:45
  that a narcotic medicine would cover
• 25:48
  so let's what is the pain
• 25:50
  so I need to ask her what does it feel like
• 25:52
  is it a burning pain is it a stabbing pain
• 25:54
  is it intermittent she was like yeah
• 25:57
  it's a nerve pain
• 25:59
  so I went back to the doctor and I said
• 26:01
  we have somebody
• 26:01
  and I believe this is a nerve pain that she's had
• 26:04
  she needs a gabapentin or a different medication
• 26:07
  the minute that she started that
• 26:09
  her pain went down to a 2 or 3
• 26:12
  she was able to eat her tuna fish sandwiches and milk
• 26:14
  don't judge and watch her soap operas
• 26:16
  which is what her favorite thing to do once a day was
• 26:19
  you have high levels of pain
• 26:20
  you can't enjoy anything
• 26:23
  she lasted with us for weeks after
• 26:26
  that was such a high quality of life
• 26:28
  because her pain management was there
• 26:30
  but if I and
• 26:31
  and look she had been to doctor to doctor to doctor
• 26:34
  if we don't dig a little bit deeper
• 26:36
  and assess and ask the right questions
• 26:38
  and teach my families to ask those questions
• 26:41
  we can't help somebody so it's so important
• 26:44
  but also there's um
• 26:46
  and I and I wanna say this in the most loving way
• 26:48
  without judgment there's huge gaps
• 26:50
  in how much time
• 26:50
  a medical practitioner is with patients and families
• 26:53
  it's up to us as family members to really say mom
• 26:57
  are you having pain what does it feel like
• 26:59
  making sure you're contacting that medical
• 27:01
  know that medication that morphine's not touching it
• 27:03
  it must be something different
• 27:05
  and we can teach you all
• 27:06
  that in a lot of the free resources
• 27:08
  yeah so
• 27:10
  and then you also talked about
• 27:11
  how palliative care can help with support
• 27:13
  so what does that support sometimes look like
• 27:15
  like is that
• 27:15
  you know yeah
• 27:16
  someone who helps with scheduling doctors appointments
• 27:18
  or you know
• 27:19
  what does that look like
• 27:20
  so when we talk about palliative care
• 27:22
  let's kind of roll that back to also
• 27:25
  that non medical doula giver now
• 27:27
  because again unfortunately
• 27:30
  when we're in mainstream medical
• 27:31
  we have 20 patients
• 27:33
  we're only there for a short amount of time
• 27:35
  so theoretically
• 27:37
  hospice and palliative care are looking at holistically
• 27:40
  the person but unfortunately
• 27:43
  because there's a lot of gaps there
• 27:44
  there's a lot of things that are not followed through
• 27:46
  or caught so let's talk about holistic care
• 27:49
  which is so important we're holistic beings physical
• 27:52
  mental emotional and spiritual
• 27:55
  and at the end of life I will tell you this
• 27:57
  that the emotional component to who we are can
• 28:02
  can produce actual physical pain
• 28:05
  and so this is the last moment we have
• 28:07
  so as practitioners
• 28:08
  we wanna come in and address all of those quadrants
• 28:11
  the physical mental
• 28:12
  emotional spiritual
• 28:14
  and let's sit here for a minute and think if
• 28:16
  if I got a terminal diagnosis today
• 28:18
  you know what would that feel like
• 28:20
  what what would
• 28:21
  I would probably be thinking of
• 28:22
  what I'm gonna miss out on or
• 28:23
  or I can't you know
• 28:24
  just lots of things we wanna help people
• 28:27
  show up make sure their physical symptoms are managed
• 28:31
  so that now we can sit we can have those conversations
• 28:34
  offer that support
• 28:35
  and one of the things that often comes up
• 28:37
  and I wanna tell you this
• 28:38
  is a very natural part of the human journey
• 28:41
  one of the promises I call it
• 28:43
  is that we all have forgiveness to give others
• 28:45
  for things in our lives
• 28:47
  and we all have forgiveness to give ourselves
• 28:49
  and that's a huge emotional part of the end of life
• 28:53
  and so helping with bringing in that space
• 28:57
  to have those dialogues which again
• 28:59
  takes building trust and having sessions
• 29:01
  and making sure symptoms are managed
• 29:03
  what about acceptance
• 29:04
  getting to that place where I'm okay
• 29:07
  I'm at peace personally with that
• 29:10
  I'm going to have my end of life
• 29:11
  I try and put myself in those shoes many times to
• 29:15
  to even have a glimmer of what that might feel like
• 29:17
  but when you have somebody who is at the end of life
• 29:22
  who's found the forgiveness
• 29:24
  who's found the acceptance
• 29:26
  maybe said to their loved ones
• 29:28
  you know thank you and I love you
• 29:29
  and please forgive me
• 29:30
  and all those beautiful things that can happen
• 29:33
  their end of lives
• 29:34
  have been the most amazing that I've ever seen
• 29:36
  so please remember holistically
• 29:38
  we need to show up
• 29:40
  look at those four quadrants
• 29:41
  and I will tell you
• 29:42
  rolling it back into our lives today
• 29:44
  is one of the greatest things
• 29:45
  we can do for care for one another
• 29:49
  I think that's so important
• 29:51
  um thank you for sharing that
• 29:52
  so so the
• 29:55
  I guess what I'm what I'm hearing from you is that the
• 29:58
  the overlaps in conventional medicine are so
• 30:02
  they're so thick
• 30:03
  that it can be kind of hard to distinguish
• 30:06
  like for
• 30:06
  for say
• 30:07
  your oncologist to tell you oh
• 30:09
  you know you should look at palliative and hospice
• 30:11
  hospice care now um
• 30:13
  what I'm also hearing though
• 30:14
  is that often times they're not being encouraged
• 30:16
  to seek that care early enough
• 30:18
  and they're being told by the time
• 30:20
  you know maybe they
• 30:21
  maybe they are like in
• 30:22
  in our case with our cancer
• 30:24
  it's usually liver failure
• 30:25
  is the reasoning behind end of life
• 30:28
  um and so they're often
• 30:29
  you know
• 30:30
  waiting until they're already in that experience of
• 30:33
  their liver is failing they could have a month
• 30:35
  but they could have they could have days or weeks
• 30:37
  and there's no way to know
• 30:38
  so what would be um
• 30:40
  some of the things that that we could do as patients
• 30:43
  as caregivers to help uh
• 30:45
  to help encourage you know
• 30:47
  encourage our medical teams to
• 30:48
  to talk with us more openly about what's going on and
• 30:52
  and when
• 30:52
  they would suggest that we start seeking the support
• 30:54
  that we really need to
• 30:56
  like you said to live well Danet
• 30:58
  I love that so
• 30:59
  this is so important
• 31:00
  what I'm going to share with you right now
• 31:02
  so one of the things that I have been told
• 31:03
  by patients that were on hospice is
• 31:06
  several of them had said that
• 31:08
  they actually begged their oncologist
• 31:11
  to put them on hospice and the oncologist said no
• 31:13
  you're not ready for it so I want you to
• 31:15
  with so much love cause
• 31:17
  I know that everyone is doing their best in this world
• 31:20
  I want you to know that you have the choices
• 31:23
  and the power so
• 31:24
  here's the thing about hospice
• 31:26
  is that
• 31:27
  you do not need your practicing doctor
• 31:31
  to give you permission to go on hospice
• 31:34
  if you feel that you and your loved one
• 31:35
  want to do that
• 31:36
  if you are up against a place where somebody is like
• 31:39
  we're not there yet but you were like no
• 31:40
  I want to you can actually contact that hospice
• 31:44
  they can send out a nurse who will do an assessment
• 31:47
  and if you are hospice appropriate
• 31:49
  they will have their medical director
• 31:51
  admit you to hospice
• 31:52
  so I don't want you to give away your power
• 31:55
  so to speak to other people
• 31:56
  I want you to know how much power that you do have
• 31:58
  and I would I would do this
• 32:00
  I would go ahead and find out who in your area what
• 32:04
  what at hospices are recommended
• 32:06
  look at the reviews what are their qualifications
• 32:09
  and get get your information ahead of time
• 32:12
  so that you can decide what's right for you
• 32:14
  and here's the thing
• 32:16
  and this is so important there are some times
• 32:19
  and I want to share this because
• 32:20
  it's amazing that people come on hospice services
• 32:24
  like President Carter right now
• 32:26
  I think he's going on eight months
• 32:28
  who actually do better
• 32:30
  and have a higher quality of life
• 32:32
  because there's just so much
• 32:33
  again holistic support that's being given
• 32:37
  um
• 32:38
  and let's be very honest that going through surgeries
• 32:41
  and going through different things
• 32:43
  are very hard courses to endure
• 32:46
  but you're the only one that knows what's right for you
• 32:48
  so find out ahead of time
• 32:50
  and I want you to understand
• 32:51
  that your practicing doctor
• 32:53
  is not the one that holds the key to hospice
• 32:55
  and getting you on it
• 32:56
  that if they don't want it for whatever reason
• 32:58
  and I know that they want the best for everyone
• 33:00
  but you have the key
• 33:02
  and so if you really feel that this is for you
• 33:03
  and whatever your doctor might not be on board
• 33:06
  you can contact your local hospice
• 33:08
  and you can ask for an assessment
• 33:09
  and if you're appropriate
• 33:11
  they will come out
• 33:12
  and they will get you on those services
• 33:14
  well thank you
• 33:15
  I think that's that's super empowering to hear
• 33:17
  it is
• 33:17
  and I hope that patients and caregivers can take that
• 33:20
  yeah because
• 33:20
  like you said it you know
• 33:22
  I think that there's this level
• 33:24
  this stigma and I
• 33:25
  we've kind of alluded to this
• 33:26
  but I don't think we really kind of jumped it yeah
• 33:29
  or you know
• 33:29
  solidly landed on this idea
• 33:31
  but this stigma around hospice care and palliative care
• 33:34
  really both of them yeah
• 33:35
  that says if I'm admitting I need this
• 33:38
  I'm somehow admitting defeat
• 33:39
  I'm admitting defeat as a doctor with my patient
• 33:41
  that I can no longer help them
• 33:43
  and I'm admitting defeat as a patient with this cancer
• 33:45
  that I will not live this
• 33:46
  I will not live through this so
• 33:48
  and so how do you help address that
• 33:50
  that fear of of admitting defeat
• 33:52
  I guess so let's go back to our doctors for a minute
• 33:55
  because we don't want to ever
• 33:56
  you know be pointing fingers
• 33:58
  and we're not at all in fact
• 33:59
  they're heroes right
• 34:00
  with what they're doing and they have a no
• 34:02
  they're doing such a fantastic job
• 34:04
  and their goal is obviously
• 34:05
  to do everything they can
• 34:06
  of course and
• 34:07
  and they're
• 34:08
  and they're really up against almost impossible odds
• 34:11
  now we've set them up just like you just said
• 34:14
  that if they put a
• 34:15
  a person that they've been treating on hospice
• 34:17
  they failed we literally have that branding for them
• 34:21
  so of course
• 34:22
  you know they really wanna try everything
• 34:24
  and they wanna keep going
• 34:25
  but they don't want this I failed
• 34:27
  and you don't wanna feel that you're giving up and
• 34:30
  and I wanna say you know
• 34:31
  the words
• 34:32
  and the phrasing that we're using around this
• 34:34
  has to change
• 34:34
  and that's how we're gonna shift the culture
• 34:36
  because what are we giving up of
• 34:40
  if I go on hospice am I giving up
• 34:42
  of having a beautiful end of life be possible
• 34:46
  for me and my family of course not
• 34:47
  I'm giving in I'm giving into that
• 34:49
  so yeah
• 34:50
  it's like you're letting go of a
• 34:52
  a different picture you're of an illusion
• 34:55
  yeah and so what we've done is we've completely
• 34:58
  in the last hundred years
• 34:59
  developed this fear of death
• 35:01
  developed the conversation
• 35:02
  trained our doctors so
• 35:04
  so all of it is a standoff
• 35:06
  we've got to educate the opposite
• 35:09
  to bring back the truth of it
• 35:10
  and that's how we can have these conversations
• 35:12
  and I also just want to say that
• 35:14
  doctors have very little time
• 35:16
  with patients to have an end of life conversation
• 35:19
  is not 15 minutes it's not 10 minutes
• 35:22
  we're not giving them the
• 35:24
  they're not trained in med school with it
• 35:26
  and they're not given the time to have it
• 35:28
  so we've got to remember how difficult it is on them
• 35:31
  and so this needs to be changed in all fronts
• 35:34
  moving forward for all of us
• 35:56
  such such a powerful way to put it
• 35:57
  and I um
• 35:59
  I love that and I
• 36:01
  I just feel like it's
• 36:03
  it's eye opening like you said it's
• 36:04
  it's this layer of knowledge
• 36:06
  that if we have this knowledge it
• 36:07
  it stops being scary
• 36:09
  and it starts feeling so much more empowering
• 36:12
  yeah I really hope that our patients
• 36:14
  that are listening
• 36:14
  our caregivers can take that away from this episode
• 36:16
  for sure I hope so
• 36:18
  because you know I
• 36:18
  I obviously this is my life's purpose
• 36:20
  and this is my life's work
• 36:21
  so you know
• 36:22
  I often think
• 36:23
  if the expectation is to keep somebody alive forever
• 36:28
  and this maybe are
• 36:30
  what we need to be doing is changing the expectation
• 36:34
  and that's what we do
• 36:36
  with the education and the truth about end of life
• 36:39
  yeah so
• 36:41
  so let's talk a little bit more about doula givers
• 36:43
  and about how this um
• 36:45
  this program that you have
• 36:46
  you have the free course and then the doula givers
• 36:48
  so can you just kind of give us a good summary of
• 36:50
  of what are these
• 36:51
  these opportunities and how can people find them
• 36:53
  yeah thank you very much for that
• 36:55
  so again this goes back
• 36:56
  you know almost two decades now
• 36:58
  where I started with that
• 36:59
  you know CEO in the hospice office
• 37:01
  with the full training of
• 37:03
  how to care for somebody at the end of life
• 37:05
  that you love
• 37:05
  three stages of end of life that I've identified
• 37:09
  interventions to use in each stage
• 37:12
  and then the you know
• 37:13
  signs that somebody's actively dying
• 37:15
  what you can do and then also how to set a sacred space
• 37:19
  and this training has been online live
• 37:22
  I do it every month and given in person
• 37:25
  and has been used all over the world
• 37:27
  and so what I want to share
• 37:28
  with you is that it's so powerful on so many levels
• 37:32
  and I also what I didn't expect
• 37:34
  so it did three set things
• 37:36
  it teaches people how to care for their loved ones
• 37:38
  at the end of life holistically
• 37:40
  it inspires you about life
• 37:42
  cause I share bedside stories from those
• 37:44
  at the end of life
• 37:45
  what they want you to know about the life's journey
• 37:47
  and you'll you'll absolutely love it
• 37:49
  and also three it is healed grief for people
• 37:52
  and I didn't expect that
• 37:53
  it is healed grief from 35 years ago
• 37:56
  40 years ago because it put everything into its context
• 38:00
  and so doula gives is that is our main platform
• 38:03
  is that free education for families
• 38:06
  the level one that's the course you would take
• 38:08
  to care for your loved one at the end of life
• 38:10
  but then of course
• 38:11
  we have given a platform now
• 38:14
  of doing your advanced directives ahead of time
• 38:16
  so free training on
• 38:17
  what are the questions that you want to think about
• 38:20
  for when that time comes
• 38:22
  for when I don't want to pursue aggressive treatment
• 38:25
  what how comfortable do I wanna be
• 38:27
  how do I make sure that my wishes are being honored
• 38:30
  by not just my family but by doctors as well
• 38:33
  so there's advanced care training
• 38:34
  and then of course
• 38:35
  there's how to care for the caregiver
• 38:37
  I have seen so many caregivers
• 38:40
  in that end of life space
• 38:42
  go right down with that main person
• 38:45
  and because it they're
• 38:46
  it's being done by one person
• 38:47
  and they're not getting any respect
• 38:48
  care and it's so intense
• 38:50
  so there's a resource center on doula
• 38:53
  give us dot com that I think
• 38:54
  that you could find
• 38:55
  just about anything that you're looking for
• 38:57
  including grief support um
• 38:59
  but I really encourage
• 39:00
  and I wanna say this from my heart
• 39:02
  I really encourage everyone in every family
• 39:05
  to take the free family caregiver course
• 39:08
  it'll change your life I promise you that
• 39:10
  yeah
• 39:12
  oh I think that's so powerful
• 39:14
  and I'm Susan
• 39:15
  I'm so glad that you were able to come on
• 39:17
  and that you were willing to talk to our small
• 39:19
  tiny cancer community of just amazing people
• 39:23
  yeah I think if you had the opportunity to come and
• 39:25
  and meet any of them in person
• 39:26
  you would absolutely love all of
• 39:27
  all of our we call them our omies
• 39:29
  um yeah
• 39:30
  but we are
• 39:31
  we are so grateful to you for taking the time
• 39:33
  and I like
• 39:34
  I like
• 39:35
  can feel myself getting emotional'cause this is just
• 39:37
  it's such powerful stuff
• 39:39
  it's such powerful stuff and
• 39:42
  and I really think that there's so much
• 39:46
  so much of a gift like
• 39:48
  the gift of life there's so much to be gained from this
• 39:50
  there is it's every
• 39:52
  it's everything
• 39:53
  and I I really hope that people caregivers
• 39:56
  people listening please share this
• 39:58
  share this with someone who
• 39:59
  you know is experiencing um
• 40:02
  the stage 4 diagnosis or I
• 40:04
  you know I would argue if
• 40:04
  if you have a pre malignant diagnosis
• 40:07
  and in your ocular melanoma journey
• 40:09
  or if you are a higher risk patient
• 40:12
  this is absolutely something that you should
• 40:13
  you should consider just learning and
• 40:15
  and learning like we talked about
• 40:17
  learning
• 40:17
  doesn't mean you're admitting any level of negative
• 40:20
  you know defeat
• 40:21
  it just means you're acknowledging that
• 40:23
  you're aware you're aware that life does end
• 40:26
  and whether it happens because of this cancer
• 40:28
  or something else is irrelevant
• 40:30
  um yes
• 40:31
  this cancer adds a whole layer of uncertainty
• 40:33
  and crazy that we all get to deal with
• 40:35
  and the medical appointments
• 40:36
  and all of that is just not fun
• 40:38
  but but Suzanne
• 40:39
  you did such a good job of just pulling this together
• 40:41
  and I feel like of helping helping
• 40:44
  uh frame this in a way that it is an empowering stage
• 40:47
  and um
• 40:48
  and I I just really
• 40:49
  I truly appreciate your passion for this
• 40:50
  so thank you so much thank you so much for having me
• 40:53
  and thank you everyone for being here and
• 40:55
  and I will tell you
• 40:56
  that this is how we do change the world
• 40:58
  by showing up for one another
• 40:59
  by sharing our gifts
• 41:00
  and by really being present and seeing each other
• 41:03
  so there's so much in this community
• 41:05
  Danet your group is amazing
• 41:06
  um if anyone has any questions
• 41:08
  reach out to our organization
• 41:10
  we are here to support you
• 41:11
  please don't hesitate to reach out
• 41:12
  and we will front those questions
• 41:13
  to Suzanne and her organization
• 41:15
  you can also find them at DoulaGivers.com
• 41:17
  which will be in the show notes and um
• 41:20
  and I I love this idea
• 41:21
  and I hope we can end let's just end with this
• 41:23
  this idea that every day can be one little lifetime
• 41:25
  I love what you said about that
• 41:27
  I love it too thank you so much