November 9, 2022 • 15 mins
On this bonus episode Sandra Lindsay, DHSc, MA, MBA, RN, speaks with Tara Liberman, DO, executive director for Northwell Health’s Hospice Care Network, about the role that culture plays in end-of-life care. They discuss racial disparities in the use of hospice, how cultural beliefs can actually influence people’s perception of pain, and what providers need to know to deliver care in a culturally sensitive manner.
This bonus edition of 20-Minute Health Talk continues the conversation from the previous episode, which featured Dr. Liberman and Mia Clar, MD, another palliative care expert. They dispelled 6 common myths about hospice. Listen to that episode here.
Chapters:
- 00:01 - Intro
- 01:30 - Racial disparities in hospice utilization
- 02:44 - Factors driving hesitancy
- 03:39 - Varying perceptions of pain
- 05:12 - Pain management at the end of life
- 05:58 - Addressing misconceptions
- 07:39 - Elevating life
- 08:49 - Breaking down barriers
- 11:04 - Signs a loved one may benefit from hospice
- 11:34 - Criteria for hospice
- 12:29 - Preparing for a delicate conversation
- 12:35 - Dealing with guilt
More from the experts
- Dr. Liberman explains the difference between palliative care vs hospice.
- Dr. Mia Clar explains 5 things experts need to know about hospice.
Watch episodes of 20-Minute Health Talk on YouTube.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:05):
Hello and welcome to another bonus episode of 20-Minute Health talk.
I'm Rob Hoell and joining me in the studio is the one and only Sandra
Lindsay,
Vice president of public health advocacy for Northwell Health, and our
newest co-host. Thanks Rob,
it's great to be with you once again. Of course, Sandra spent 29 years
in nursing most recently, as director of Critical Care Nursing at LIJ
(00:27):
Medical Center as the first American to
receive the Covid-19 vaccine outside of a clinical trial. Sandra has
become a household name and prominent advocate for Health Equity and
access. For that work,
she has received numerous honors, including the Presidential medal of
freedom from President Joe Biden here in the US and just a few weeks
ago, the order of Distinction from the Prime Minister of her home
(00:49):
country of Jamaica on last week's show, we spoke with doctors Tara
Liberman and Mia
Clar about common misconceptions around hospice,
and the factors that too often prevent people from using
the valuable end-of-life services. Today we take a closer look
at one of those factors. Sandra.
Thanks Rob, after your conversation last week,
(01:10):
I followed up with Dr.
Liberman, executive director of Northwell Health Hospice.
Care Network about the role that culture plays in end-of-life care.
I've known Dr.
Liberman for many years.
Working at Long Island, Jewish Medical Center,
treating some of the sickest patients in our ICUs.
I've seen firsthand how misconceptions about hospice some based,
(01:36):
on cultural beliefs, can create barriers to care.
Studies show that non-white patients are considerably less likely to
use end-of-life Care and Pain Management.
Black seniors in particular are more likely to forego Hospice Care
compared with white and Latino seniors.
(01:57):
They're more likely to have multiple emergency department visits and
hospitalizations, and endure exhaustive treatments in the last six
months of life, compared with white individuals,
regardless of cause of death.
I asked Dr.
Liberman what factors drive
this hesitancy about end-of-life care, how cultural beliefs can
(02:21):
actually influence people's perception of pain, and how we can break
down cultural barriers to improve and possibly even extend their
lives.
Here is my conversation with Dr.
Liberman
Dr.
Liberman, welcome back to 20-Minute
(02:43):
Health Talk. On last week's episode,
you talked about working closely with patients and families to
understand what's meaningful to them.
We know that certain cultures are less likely to use this service.
What are some of the factors
driving that hesitancy?
I think there's a lot of different cultural beliefs and understandings
(03:07):
that as a practitioner it's really important to dive into
understanding around what is meaningful to them.
There are opportunities from mistrust in health and Health Care
Systems, given past experience for some cultures.
There's a understanding of pain and how pain can be appreciated
(03:30):
by different cultures and how it can be treated.
And then there's also just the idea of having a conversation about
death in different cultures, which can be taboo.
We know that the perception of pain can differ in various cultures.
Can you talk about that and how that can impact care being delivered
(03:51):
through hospice?
So pain is a very subjective feeling and those in different cultures
may exhibit pain in different
ways and may appreciate the way pain is affecting their medical
condition.
So some cultures when experiencing pain may feel as though it might be
(04:12):
a sign of weakness if they exhibit any pain.
So they try very hard to be stoic and not exhibit any pain.
Some cultures may feel that the pain that they're experiencing is a
part of their faith and this is the way that
God would want them to be experiencing the disease that they're having
(04:33):
through pain and to give them medications would lessen their
relationship with their faith.
Other people will feel that pain can influence the way that they are
being cared for.
So you might want to talk to them about what that means to them.
(04:55):
If medication is appropriate in some cases, they may not feel that
because they
want to feel the pain because that to them may feel as though they're
actually getting better In some cultures.
That's what they believe.
So, there's so many different thoughts around what pain means to
different cultures.
Some may also see that they're sleeping more after getting pain
(05:17):
medication and may see that as a sign that
we're hastening their progression to death.
Yeah, I think there's a lot of misconception about medication for pain
that they feel that
when given it, it can hasten someone's life and that they
could pass away sooner.
When reality, we've never proven that medication will hasten someone's
(05:39):
death, given an appropriate amount.
So, you know, a lot of education around how to provide the appropriate
dosage of whatever medication you're giving the patient,
and so that the loved ones understand that this is really
about decreasing suffering and not hastening the death of a loved one.
In many
(06:00):
cultures,
speaking about death is off-limits, as you mentioned before. In my
Jamaican culture, we often associate hospice with giving up on our
loved ones, in the South African culture, it is believed that speaking
about death will make it happen
faster. Japanese and Iranian cultures avoid the discussion altogether
(06:24):
and some cultures believe that God, not a physician or any other
individual, decides when life ends. What do you say to individuals who hold
these beliefs or avoid having these discussions?
I think that it's very important to first understand the belief and
(06:45):
understand where their thought is, there's a lot of cultures exactly
what you're saying is that speaking about death, is a taboo that it
may bring that coming on sooner or it may upset the patient or their
loved ones,
and so there's a lot of avoidance. I think it's important to talk about
what matters most to a patient and family when their life is getting
(07:08):
closer to the end and not talking about the
death, but how do we acknowledge and elevate their life when their
life span may be getting shorter and not to say that the person is
going to die in a week, a month, six months,
but just to say, what would be meaningful to you and your loved ones
when you are getting sicker, and that's how I try to frame the
(07:32):
conversation.
More about when someone is sick, has an advanced illness, and maybe
having a life lesson lifespan.
I like that
term that you use, elevating their life as you know, they've become
sick or getting sicker progressing.
So that people see it as in elevation and an enhancement of life
(07:56):
because often people feel like we're cutting life short, or taking away
and don't see the positives in hospice care.
So can you talk to us a little bit more about that?
Yeah, I think that's also a misnomer,
especially with hospice.
Many people feel that going to be on hospice means that we will give
(08:17):
up the treatments.
Give up the hope. Giving up the medical management.
When the reality of it, its really elevating and expanding someone's quality,
their comfort,
their relationship with their families, relationship with their
cultural, spiritual leaders Etc.
And I think that we need to change the idea of what
(08:41):
end of life looks like
and what the care of hospice looks like is more of a support system
and a way to elevate their quality.
So then how do we break down
the cultural barriers to accept in Hospice Care, particularly in
communities who are lagging behind in
acceptance?
I think it's really important to reach out to these communities and give
(09:04):
education on what is the benefit of hospice and what the benefit of
having conversations about what's meaningful to their loved ones when
they're getting close to the end of life, and understanding
and meeting meeting them where they're at in their own cultural
relationship with this experience.
And everybody is different, and we should never assume given their
(09:27):
background, that they all believe the same
and just individually having conversations about how can we help you
and your family, your loved ones,
talk about and experience an opportunity for us to improve their
quality of life, whatever time that is left.
Does developing a trusting relationship with a practitioner
(09:52):
help with getting through to some of these people?
I think it does.
I also think that practitioner can reach out to their cultural
leaders.
Some cultures look to a faith-based leader for information about how
to handle a situation.
Others will look to a community leader who is sort of helping them
gather the information and understand how they can be cared for.
(10:15):
So creating a relationship and partnering with their cultural leaders,
their spiritual leaders, can really help understand and help the family
get through the care of their loved ones.
And that's important because when people
are in a crisis, you know, that's
who they look to.
Yeah, I can think of so many times when I would speak with the
(10:38):
family who was hesitant and say, who's the person that you asked most,
who's the person that can really help us guide you through this.
And if they had somebody that was meaningful them, we asked if it was okay
to reach out to them and then we partnered in understanding how we
can you know, help make decisions and help move forward with the care
that they need.
So I think that's really important.
Just a lot of partnering, a lot of exploring,
(11:00):
just a lot of, you know, asking questions and understanding where
they're at.
And what are the signs families can look for that
might indicate a loved one
could benefit from hospice?
If you have a loved one who you feel may have less than six months to
live or that has been eating less, sleeping more, maybe having symptoms
(11:25):
like shortness of breath, pain, anxiety, confusion, and those would be
signs and symptoms that I would say hospice might be
appropriate.
What are the criteria for hospice and does culture play a role in that
decision?
So, you know, for hospice, it's a Medicare guidelines of less than six
(11:46):
months to live and that might be very difficult for a culture to be
able to admit that somebody has less than six months to live.
So a lot of times what a practitioner can say is
you know, when somebody's getting closer to the end of their life, we
would like to be able to support you and give you all the best support
(12:07):
we can in their home and help meet you where they are at in caring for
them.
So there's a lot of conversations about what the services are and
maybe avoiding the use of the word hospice because it has a lot of
negative connotations and sometimes feels like that we're just giving
up and there's a lot of mistrust around that when the opposite is the
truth.
We're really looking to just elevate their life.
(12:30):
So then, how do you prepare practitioners to have these delicate
conversations, knowing what terms to use,
how to bring It forward, Hospice Care in a more positive light, and
reduce the number of negative connotations?
So to I think, when you describe the services of what hospice is without
(12:53):
utilizing the name, anybody would accept the care.
They would love to have someone come to their home, a nurse,
they love to have a volunteer,
they'd love to have
a home health aid come and help care for their loved one,
they'd love to have a chaplain partner with one of their spiritual
leaders,
so I tell practitioners to describe what the service is and usually,
that is how we can get people to understand that this is really
(13:14):
about, you know, creating a supportive environment for a patient and
their loved ones at home.
And so, at that point, I think it's a little bit easier to then
understand that this is a service, we call Hospice and maybe allow
them to
to recognize that it's not about just stopping but more about
support.
(13:36):
So one more thing, I'd like to touch on because family members also
often feel guilty, there is a big component of guilt and perhaps
certain cultures experience that differently.
Can you talk to us a little bit more about that?
Yeah, so it's interesting.
There are some cultures you know that really focus on a hierarchical
(13:59):
or a patriarchal
way of having conversations at end of life.
So we see some cultures,
the patient cannot make the decision.
It would be, you know, the head of the household, which might be the
son, or it might be the daughter, depending on the culture.
And there's no conversation about what's meaningful.
It's just what their decision is and that's hard for us in the United
(14:19):
States
where it's autonomy, right?
The patient should be involved and have a conversation.
So there's lots of different nuances with cultures when it comes to
decisions.
And I think that
when you have these cultures, sometimes, there's less burden
because they know where they stand when there's more of a ambiguity
of, who's to make decisions and they haven't had conversations with
(14:41):
that patient,
then we don't know what they want, and then there's an element of
guilt.
So, I just really encourage everybody to just be open and honest and
talk about what's happening.
Just talk about
what's most important to them?
What matters most? Well, this has been an interesting conversation.
Dr.
Liberman, thanks so much for joining me on
this bonus episode of 20-Minute Health Talk, always a pleasure,
(15:04):
speaking to you. Sandra this is amazing work and so excited for you.
I mean, the last time I saw you were in scrubs and now it's so lovely
to see you doing this type of work.
It's so well deserved, I'm really excited for you and actually
everyone to be able to hear the knowledge that you have.
Thank you.
I really appreciate that Dr.
Liberman, thanks so much.
(15:27):
Get more expert Insight from the leading voices in healthcare today.
You can subscribe to 20-Minute Health Talk wherever podcasts are
available.
Hello and welcome to another bonus episode of 20-Minute Health talk.
I'm Rob Hoell and joining me in the studio is the one and only Sandra
Lindsay,
Vice president of public health advocacy for Northwell Health, and our
newest co-host. Thanks Rob,
it's great to be with you once again. Of course, Sandra spent 29 years
in nursing most recently, as director of Critical Care Nursing at LIJ
(00:27):
Medical Center as the first American to
receive the Covid-19 vaccine outside of a clinical trial. Sandra has
become a household name and prominent advocate for Health Equity and
access. For that work,
she has received numerous honors, including the Presidential medal of
freedom from President Joe Biden here in the US and just a few weeks
ago, the order of Distinction from the Prime Minister of her home
(00:49):
country of Jamaica on last week's show, we spoke with doctors Tara
Liberman and Mia
Clar about common misconceptions around hospice,
and the factors that too often prevent people from using
the valuable end-of-life services. Today we take a closer look
at one of those factors. Sandra.
Thanks Rob, after your conversation last week,
(01:10):
I followed up with Dr.
Liberman, executive director of Northwell Health Hospice.
Care Network about the role that culture plays in end-of-life care.
I've known Dr.
Liberman for many years.
Working at Long Island, Jewish Medical Center,
treating some of the sickest patients in our ICUs.
I've seen firsthand how misconceptions about hospice some based,
(01:36):
on cultural beliefs, can create barriers to care.
Studies show that non-white patients are considerably less likely to
use end-of-life Care and Pain Management.
Black seniors in particular are more likely to forego Hospice Care
compared with white and Latino seniors.
(01:57):
They're more likely to have multiple emergency department visits and
hospitalizations, and endure exhaustive treatments in the last six
months of life, compared with white individuals,
regardless of cause of death.
I asked Dr.
Liberman what factors drive
this hesitancy about end-of-life care, how cultural beliefs can
(02:21):
actually influence people's perception of pain, and how we can break
down cultural barriers to improve and possibly even extend their
lives.
Here is my conversation with Dr.
Liberman
Dr.
Liberman, welcome back to 20-Minute
(02:43):
Health Talk. On last week's episode,
you talked about working closely with patients and families to
understand what's meaningful to them.
We know that certain cultures are less likely to use this service.
What are some of the factors
driving that hesitancy?
I think there's a lot of different cultural beliefs and understandings
(03:07):
that as a practitioner it's really important to dive into
understanding around what is meaningful to them.
There are opportunities from mistrust in health and Health Care
Systems, given past experience for some cultures.
There's a understanding of pain and how pain can be appreciated
(03:30):
by different cultures and how it can be treated.
And then there's also just the idea of having a conversation about
death in different cultures, which can be taboo.
We know that the perception of pain can differ in various cultures.
Can you talk about that and how that can impact care being delivered
(03:51):
through hospice?
So pain is a very subjective feeling and those in different cultures
may exhibit pain in different
ways and may appreciate the way pain is affecting their medical
condition.
So some cultures when experiencing pain may feel as though it might be
(04:12):
a sign of weakness if they exhibit any pain.
So they try very hard to be stoic and not exhibit any pain.
Some cultures may feel that the pain that they're experiencing is a
part of their faith and this is the way that
God would want them to be experiencing the disease that they're having
(04:33):
through pain and to give them medications would lessen their
relationship with their faith.
Other people will feel that pain can influence the way that they are
being cared for.
So you might want to talk to them about what that means to them.
(04:55):
If medication is appropriate in some cases, they may not feel that
because they
want to feel the pain because that to them may feel as though they're
actually getting better In some cultures.
That's what they believe.
So, there's so many different thoughts around what pain means to
different cultures.
Some may also see that they're sleeping more after getting pain
(05:17):
medication and may see that as a sign that
we're hastening their progression to death.
Yeah, I think there's a lot of misconception about medication for pain
that they feel that
when given it, it can hasten someone's life and that they
could pass away sooner.
When reality, we've never proven that medication will hasten someone's
(05:39):
death, given an appropriate amount.
So, you know, a lot of education around how to provide the appropriate
dosage of whatever medication you're giving the patient,
and so that the loved ones understand that this is really
about decreasing suffering and not hastening the death of a loved one.
In many
(06:00):
cultures,
speaking about death is off-limits, as you mentioned before. In my
Jamaican culture, we often associate hospice with giving up on our
loved ones, in the South African culture, it is believed that speaking
about death will make it happen
faster. Japanese and Iranian cultures avoid the discussion altogether
(06:24):
and some cultures believe that God, not a physician or any other
individual, decides when life ends. What do you say to individuals who hold
these beliefs or avoid having these discussions?
I think that it's very important to first understand the belief and
(06:45):
understand where their thought is, there's a lot of cultures exactly
what you're saying is that speaking about death, is a taboo that it
may bring that coming on sooner or it may upset the patient or their
loved ones,
and so there's a lot of avoidance. I think it's important to talk about
what matters most to a patient and family when their life is getting
(07:08):
closer to the end and not talking about the
death, but how do we acknowledge and elevate their life when their
life span may be getting shorter and not to say that the person is
going to die in a week, a month, six months,
but just to say, what would be meaningful to you and your loved ones
when you are getting sicker, and that's how I try to frame the
(07:32):
conversation.
More about when someone is sick, has an advanced illness, and maybe
having a life lesson lifespan.
I like that
term that you use, elevating their life as you know, they've become
sick or getting sicker progressing.
So that people see it as in elevation and an enhancement of life
(07:56):
because often people feel like we're cutting life short, or taking away
and don't see the positives in hospice care.
So can you talk to us a little bit more about that?
Yeah, I think that's also a misnomer,
especially with hospice.
Many people feel that going to be on hospice means that we will give
(08:17):
up the treatments.
Give up the hope. Giving up the medical management.
When the reality of it, its really elevating and expanding someone's quality,
their comfort,
their relationship with their families, relationship with their
cultural, spiritual leaders Etc.
And I think that we need to change the idea of what
(08:41):
end of life looks like
and what the care of hospice looks like is more of a support system
and a way to elevate their quality.
So then how do we break down
the cultural barriers to accept in Hospice Care, particularly in
communities who are lagging behind in
acceptance?
I think it's really important to reach out to these communities and give
(09:04):
education on what is the benefit of hospice and what the benefit of
having conversations about what's meaningful to their loved ones when
they're getting close to the end of life, and understanding
and meeting meeting them where they're at in their own cultural
relationship with this experience.
And everybody is different, and we should never assume given their
(09:27):
background, that they all believe the same
and just individually having conversations about how can we help you
and your family, your loved ones,
talk about and experience an opportunity for us to improve their
quality of life, whatever time that is left.
Does developing a trusting relationship with a practitioner
(09:52):
help with getting through to some of these people?
I think it does.
I also think that practitioner can reach out to their cultural
leaders.
Some cultures look to a faith-based leader for information about how
to handle a situation.
Others will look to a community leader who is sort of helping them
gather the information and understand how they can be cared for.
(10:15):
So creating a relationship and partnering with their cultural leaders,
their spiritual leaders, can really help understand and help the family
get through the care of their loved ones.
And that's important because when people
are in a crisis, you know, that's
who they look to.
Yeah, I can think of so many times when I would speak with the
(10:38):
family who was hesitant and say, who's the person that you asked most,
who's the person that can really help us guide you through this.
And if they had somebody that was meaningful them, we asked if it was okay
to reach out to them and then we partnered in understanding how we
can you know, help make decisions and help move forward with the care
that they need.
So I think that's really important.
Just a lot of partnering, a lot of exploring,
(11:00):
just a lot of, you know, asking questions and understanding where
they're at.
And what are the signs families can look for that
might indicate a loved one
could benefit from hospice?
If you have a loved one who you feel may have less than six months to
live or that has been eating less, sleeping more, maybe having symptoms
(11:25):
like shortness of breath, pain, anxiety, confusion, and those would be
signs and symptoms that I would say hospice might be
appropriate.
What are the criteria for hospice and does culture play a role in that
decision?
So, you know, for hospice, it's a Medicare guidelines of less than six
(11:46):
months to live and that might be very difficult for a culture to be
able to admit that somebody has less than six months to live.
So a lot of times what a practitioner can say is
you know, when somebody's getting closer to the end of their life, we
would like to be able to support you and give you all the best support
(12:07):
we can in their home and help meet you where they are at in caring for
them.
So there's a lot of conversations about what the services are and
maybe avoiding the use of the word hospice because it has a lot of
negative connotations and sometimes feels like that we're just giving
up and there's a lot of mistrust around that when the opposite is the
truth.
We're really looking to just elevate their life.
(12:30):
So then, how do you prepare practitioners to have these delicate
conversations, knowing what terms to use,
how to bring It forward, Hospice Care in a more positive light, and
reduce the number of negative connotations?
So to I think, when you describe the services of what hospice is without
(12:53):
utilizing the name, anybody would accept the care.
They would love to have someone come to their home, a nurse,
they love to have a volunteer,
they'd love to have
a home health aid come and help care for their loved one,
they'd love to have a chaplain partner with one of their spiritual
leaders,
so I tell practitioners to describe what the service is and usually,
that is how we can get people to understand that this is really
(13:14):
about, you know, creating a supportive environment for a patient and
their loved ones at home.
And so, at that point, I think it's a little bit easier to then
understand that this is a service, we call Hospice and maybe allow
them to
to recognize that it's not about just stopping but more about
support.
(13:36):
So one more thing, I'd like to touch on because family members also
often feel guilty, there is a big component of guilt and perhaps
certain cultures experience that differently.
Can you talk to us a little bit more about that?
Yeah, so it's interesting.
There are some cultures you know that really focus on a hierarchical
(13:59):
or a patriarchal
way of having conversations at end of life.
So we see some cultures,
the patient cannot make the decision.
It would be, you know, the head of the household, which might be the
son, or it might be the daughter, depending on the culture.
And there's no conversation about what's meaningful.
It's just what their decision is and that's hard for us in the United
(14:19):
States
where it's autonomy, right?
The patient should be involved and have a conversation.
So there's lots of different nuances with cultures when it comes to
decisions.
And I think that
when you have these cultures, sometimes, there's less burden
because they know where they stand when there's more of a ambiguity
of, who's to make decisions and they haven't had conversations with
(14:41):
that patient,
then we don't know what they want, and then there's an element of
guilt.
So, I just really encourage everybody to just be open and honest and
talk about what's happening.
Just talk about
what's most important to them?
What matters most? Well, this has been an interesting conversation.
Dr.
Liberman, thanks so much for joining me on
this bonus episode of 20-Minute Health Talk, always a pleasure,
(15:04):
speaking to you. Sandra this is amazing work and so excited for you.
I mean, the last time I saw you were in scrubs and now it's so lovely
to see you doing this type of work.
It's so well deserved, I'm really excited for you and actually
everyone to be able to hear the knowledge that you have.
Thank you.
I really appreciate that Dr.
Liberman, thanks so much.
(15:27):
Get more expert Insight from the leading voices in healthcare today.
You can subscribe to 20-Minute Health Talk wherever podcasts are
available.
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