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20MHT BONUS w/ Sandra Lindsay: Understanding cultural barriers to hospice · 20-Minute Health Talk

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  Hello and welcome to another bonus episode of 20-Minute Health talk.
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  I'm Rob Hoell and joining me in the studio is the one and only Sandra
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  Lindsay,
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  Vice president of public health advocacy for Northwell Health, and our
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  newest co-host. Thanks Rob,
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  it's great to be with you once again. Of course, Sandra spent 29 years
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  in nursing most recently, as director of Critical Care Nursing at LIJ
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  Medical Center as the first American to
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  receive the Covid-19 vaccine outside of a clinical trial. Sandra has
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  become a household name and prominent advocate for Health Equity and
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  access. For that work,
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  she has received numerous honors, including the Presidential medal of
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  freedom from President Joe Biden here in the US and just a few weeks
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  ago, the order of Distinction from the Prime Minister of her home
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  country of Jamaica on last week's show, we spoke with doctors Tara
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  Liberman and Mia
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  Clar about common misconceptions around hospice,
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  and the factors that too often prevent people from using
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  the valuable end-of-life services. Today we take a closer look
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  at one of those factors. Sandra.
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  Thanks Rob, after your conversation last week,
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  I followed up with Dr.
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  Liberman, executive director of Northwell Health Hospice.
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  Care Network about the role that culture plays in end-of-life care.
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  I've known Dr.
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  Liberman for many years.
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  Working at Long Island, Jewish Medical Center,
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  treating some of the sickest patients in our ICUs.
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  I've seen firsthand how misconceptions about hospice some based,
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  on cultural beliefs, can create barriers to care.
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  Studies show that non-white patients are considerably less likely to
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  use end-of-life Care and Pain Management.
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  Black seniors in particular are more likely to forego Hospice Care
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  compared with white and Latino seniors.
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  They're more likely to have multiple emergency department visits and
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  hospitalizations, and endure exhaustive treatments in the last six
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  months of life, compared with white individuals,
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  regardless of cause of death.
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  I asked Dr.
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  Liberman what factors drive
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  this hesitancy about end-of-life care, how cultural beliefs can
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  actually influence people's perception of pain, and how we can break
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  down cultural barriers to improve and possibly even extend their
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  lives.
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  Here is my conversation with Dr.
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  Liberman
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  Dr.
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  Liberman, welcome back to 20-Minute
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  Health Talk. On last week's episode,
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  you talked about working closely with patients and families to
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  understand what's meaningful to them.
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  We know that certain cultures are less likely to use this service.
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  What are some of the factors
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  driving that hesitancy?
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  I think there's a lot of different cultural beliefs and understandings
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  that as a practitioner it's really important to dive into
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  understanding around what is meaningful to them.
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  There are opportunities from mistrust in health and Health Care
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  Systems, given past experience for some cultures.
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  There's a understanding of pain and how pain can be appreciated
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  by different cultures and how it can be treated.
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  And then there's also just the idea of having a conversation about
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  death in different cultures, which can be taboo.
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  We know that the perception of pain can differ in various cultures.
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  Can you talk about that and how that can impact care being delivered
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  through hospice?
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  So pain is a very subjective feeling and those in different cultures
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  may exhibit pain in different
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  ways and may appreciate the way pain is affecting their medical
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  condition.
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  So some cultures when experiencing pain may feel as though it might be
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  a sign of weakness if they exhibit any pain.
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  So they try very hard to be stoic and not exhibit any pain.
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  Some cultures may feel that the pain that they're experiencing is a
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  part of their faith and this is the way that
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  God would want them to be experiencing the disease that they're having
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  through pain and to give them medications would lessen their
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  relationship with their faith.
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  Other people will feel that pain can influence the way that they are
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  being cared for.
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  So you might want to talk to them about what that means to them.
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  If medication is appropriate in some cases, they may not feel that
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  because they
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  want to feel the pain because that to them may feel as though they're
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  actually getting better In some cultures.
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  That's what they believe.
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  So, there's so many different thoughts around what pain means to
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  different cultures.
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  Some may also see that they're sleeping more after getting pain
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  medication and may see that as a sign that
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  we're hastening their progression to death.
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  Yeah, I think there's a lot of misconception about medication for pain
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  that they feel that
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  when given it, it can hasten someone's life and that they
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  could pass away sooner.
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  When reality, we've never proven that medication will hasten someone's
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  death, given an appropriate amount.
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  So, you know, a lot of education around how to provide the appropriate
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  dosage of whatever medication you're giving the patient,
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  and so that the loved ones understand that this is really
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  about decreasing suffering and not hastening the death of a loved one.
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  In many
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  cultures,
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  speaking about death is off-limits, as you mentioned before. In my
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  Jamaican culture, we often associate hospice with giving up on our
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  loved ones, in the South African culture, it is believed that speaking
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  about death will make it happen
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  faster. Japanese and Iranian cultures avoid the discussion altogether
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  and some cultures believe that God, not a physician or any other
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  individual, decides when life ends. What do you say to individuals who hold
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  these beliefs or avoid having these discussions?
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  I think that it's very important to first understand the belief and
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  understand where their thought is, there's a lot of cultures exactly
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  what you're saying is that speaking about death, is a taboo that it
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  may bring that coming on sooner or it may upset the patient or their
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  loved ones,
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  and so there's a lot of avoidance. I think it's important to talk about
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  what matters most to a patient and family when their life is getting
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  closer to the end and not talking about the
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  death, but how do we acknowledge and elevate their life when their
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  life span may be getting shorter and not to say that the person is
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  going to die in a week, a month, six months,
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  but just to say, what would be meaningful to you and your loved ones
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  when you are getting sicker, and that's how I try to frame the
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  conversation.
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  More about when someone is sick, has an advanced illness, and maybe
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  having a life lesson lifespan.
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  I like that
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  term that you use, elevating their life as you know, they've become
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  sick or getting sicker progressing.
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  So that people see it as in elevation and an enhancement of life
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  because often people feel like we're cutting life short, or taking away
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  and don't see the positives in hospice care.
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  So can you talk to us a little bit more about that?
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  Yeah, I think that's also a misnomer,
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  especially with hospice.
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  Many people feel that going to be on hospice means that we will give
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  up the treatments.
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  Give up the hope. Giving up the medical management.
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  When the reality of it, its really elevating and expanding someone's quality,
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  their comfort,
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  their relationship with their families, relationship with their
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  cultural, spiritual leaders Etc.
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  And I think that we need to change the idea of what
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  end of life looks like
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  and what the care of hospice looks like is more of a support system
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  and a way to elevate their quality.
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  So then how do we break down
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  the cultural barriers to accept in Hospice Care, particularly in
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  communities who are lagging behind in
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  acceptance?
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  I think it's really important to reach out to these communities and give
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  education on what is the benefit of hospice and what the benefit of
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  having conversations about what's meaningful to their loved ones when
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  they're getting close to the end of life, and understanding
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  and meeting meeting them where they're at in their own cultural
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  relationship with this experience.
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  And everybody is different, and we should never assume given their
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  background, that they all believe the same
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  and just individually having conversations about how can we help you
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  and your family, your loved ones,
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  talk about and experience an opportunity for us to improve their
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  quality of life, whatever time that is left.
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  Does developing a trusting relationship with a practitioner
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  help with getting through to some of these people?
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  I think it does.
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  I also think that practitioner can reach out to their cultural
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  leaders.
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  Some cultures look to a faith-based leader for information about how
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  to handle a situation.
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  Others will look to a community leader who is sort of helping them
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  gather the information and understand how they can be cared for.
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  So creating a relationship and partnering with their cultural leaders,
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  their spiritual leaders, can really help understand and help the family
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  get through the care of their loved ones.
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  And that's important because when people
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  are in a crisis, you know, that's
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  who they look to.
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  Yeah, I can think of so many times when I would speak with the
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  family who was hesitant and say, who's the person that you asked most,
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  who's the person that can really help us guide you through this.
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  And if they had somebody that was meaningful them, we asked if it was okay
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  to reach out to them and then we partnered in understanding how we
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  can you know, help make decisions and help move forward with the care
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  that they need.
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  So I think that's really important.
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  Just a lot of partnering, a lot of exploring,
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  just a lot of, you know, asking questions and understanding where
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  they're at.
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  And what are the signs families can look for that
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  might indicate a loved one
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  could benefit from hospice?
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  If you have a loved one who you feel may have less than six months to
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  live or that has been eating less, sleeping more, maybe having symptoms
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  like shortness of breath, pain, anxiety, confusion, and those would be
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  signs and symptoms that I would say hospice might be
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  appropriate.
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  What are the criteria for hospice and does culture play a role in that
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  decision?
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  So, you know, for hospice, it's a Medicare guidelines of less than six
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  months to live and that might be very difficult for a culture to be
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  able to admit that somebody has less than six months to live.
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  So a lot of times what a practitioner can say is
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  you know, when somebody's getting closer to the end of their life, we
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  would like to be able to support you and give you all the best support
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  we can in their home and help meet you where they are at in caring for
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  them.
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  So there's a lot of conversations about what the services are and
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  maybe avoiding the use of the word hospice because it has a lot of
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  negative connotations and sometimes feels like that we're just giving
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  up and there's a lot of mistrust around that when the opposite is the
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  truth.
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  We're really looking to just elevate their life.
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  So then, how do you prepare practitioners to have these delicate
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  conversations, knowing what terms to use,
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  how to bring It forward, Hospice Care in a more positive light, and
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  reduce the number of negative connotations?
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  So to I think, when you describe the services of what hospice is without
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  utilizing the name, anybody would accept the care.
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  They would love to have someone come to their home, a nurse,
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  they love to have a volunteer,
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  they'd love to have
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  a home health aid come and help care for their loved one,
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  they'd love to have a chaplain partner with one of their spiritual
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  leaders,
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  so I tell practitioners to describe what the service is and usually,
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  that is how we can get people to understand that this is really
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  about, you know, creating a supportive environment for a patient and
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  their loved ones at home.
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  And so, at that point, I think it's a little bit easier to then
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  understand that this is a service, we call Hospice and maybe allow
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  them to
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  to recognize that it's not about just stopping but more about
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  support.
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  So one more thing, I'd like to touch on because family members also
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  often feel guilty, there is a big component of guilt and perhaps
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  certain cultures experience that differently.
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  Can you talk to us a little bit more about that?
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  Yeah, so it's interesting.
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  There are some cultures you know that really focus on a hierarchical
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  or a patriarchal
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  way of having conversations at end of life.
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  So we see some cultures,
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  the patient cannot make the decision.
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  It would be, you know, the head of the household, which might be the
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  son, or it might be the daughter, depending on the culture.
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  And there's no conversation about what's meaningful.
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  It's just what their decision is and that's hard for us in the United
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  States
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  where it's autonomy, right?
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  The patient should be involved and have a conversation.
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  So there's lots of different nuances with cultures when it comes to
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  decisions.
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  And I think that
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  when you have these cultures, sometimes, there's less burden
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  because they know where they stand when there's more of a ambiguity
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  of, who's to make decisions and they haven't had conversations with
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  that patient,
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  then we don't know what they want, and then there's an element of
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  guilt.
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  So, I just really encourage everybody to just be open and honest and
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  talk about what's happening.
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  Just talk about
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  what's most important to them?
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  What matters most? Well, this has been an interesting conversation.
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  Dr.
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  Liberman, thanks so much for joining me on
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  this bonus episode of 20-Minute Health Talk, always a pleasure,
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  speaking to you. Sandra this is amazing work and so excited for you.
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  I mean, the last time I saw you were in scrubs and now it's so lovely
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  to see you doing this type of work.
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  It's so well deserved, I'm really excited for you and actually
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  everyone to be able to hear the knowledge that you have.
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  Thank you.
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  I really appreciate that Dr.
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  Liberman, thanks so much.
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  Get more expert Insight from the leading voices in healthcare today.
• 15:32
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