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 how providers can deliver care in a culturally appropriate manner.
Hello and welcome to another bonus episode of 20 minute health talk. I'm rob Hoyle and joining me in the studio is the one and only. Sandra Lindsay, Vice president of public health advocacy for North Well 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 Ellijay 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 U. S. And just a few weeks ago, the order of distinction from the Prime Minister of her home country of Jamaica. On last week's show, we spoke with doctors Tara Lieberman 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, I followed up with Dr Lieberman, executive director of North Well Health Hospice Care Network about the role that culture plays in end of life care. I've known Dr Lieberman for many years working at Long Island, jewish Medical Center treating some of the sickest patients in our I. C. U. S. I've seen firsthand how misconceptions about hospice, some based 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 forgo hospice care compared with white and latino seniors, 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 Lieberman what factors drive this hesitancy about end of life care, How cultural beliefs can 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 Lieberman, Dr. Lieberman, welcome back to 20 minute 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 the service. What are some of the factors driving that hesitancy? Um I think there's a lot of different cultural beliefs and understandings that as a practitioner, it's really important to dive into understanding um around what is meaningful to them. Um There are opportunities for mistrust um in health health care system, given past experience for some cultures, there's a understanding of pain and how pain can be um appreciated by different cultures and how it can be treated, and then there's also just the idea of having a conversation about death um in different cultures, which can be taboo, We know that the perception of pain um can differ in various cultures. Can you talk about that and how that can impact here being delivered 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 being um affecting their medical conditions. So some cultures when experiencing pain may feel as though it might be a sign of weakness um 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 experiencing is um the faith of part of their faith, and this is the way that God would want them to be um experiencing the disease that they're having through pain and to give them medications would lessen their relationship with their faith. Um Other people will feel that pain can influence the way that they are being cared for. Um So, so you might want to talk to them about what that means to them 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 um 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 medication and may see that as a sign of, Well 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 giving it, it can hasten someone's life and that they could pass away sooner when reality, we've never proven um that medication will hasten someone's 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 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. 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 understand where their thought is. Um there's a lot of culture is 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 closer to the end and not talk talking about the specific death. But how do we acknowledge and elevate their life when their lifespan 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 conversation more about when someone is sick has an advanced illness and maybe having a lesson lifespan and I like that term that you use um elevating their life as you know they've become sick or getting sicker progressing so that people see it as an elevation and an enhancement of life because often people feel like we're cutting life short or taken 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 you're going to be on hospice means that we will um give up the treatments, give up um the hope, giving up the um medical management. What reality of it's really elevating and um expanding someone's quality, their comfort, their relationship with their families, relationship with their culture or spiritual leaders etcetera. And I think that we need to change the idea of what um 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, give education on what is the benefit of hospice and what the benefit of, of having conversations about what's meaningful to their loved when they're getting close to the end of life and understanding and 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 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 um an opportunity for us to improve their quality of life, whatever time that is left does developing a trusting relationship with a practitioner, um will that help with getting true to some of these people? I think it does. I also think that 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. So creating a relationship and partnering with their cultural leaders, their spiritual leaders can really help understand and and help the family get through the care of their loved one. And that's important because when people are in a crisis, um, you know, that's where who they look to. Yeah, I can think of so many times when I would speak with the family who was hesitant and say, who is the person that you asked most? Who is the person that can really help us guide you through this? And if they had somebody that was meaningful them, we asked it was okay to reach out to them and then we partnered in understanding how we can help make decisions and help move forward with the care that they need. Um, so I think that's really important. Just a lot of partnering, a lot of exploring and 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 um, you feel may have less than six months to live or that has been eating less, sleeping more. Um, maybe have symptoms like shortness of breath pain, anxiety, confusion and those would be things 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 months to live. And that might be very difficult for a culture to 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 is getting closer to the end of their life, we'd like to be able to support you and give you all the um, the best support we can in their home and help meet you where they're at and caring for them. Um, 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 their life. 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. I think when you describe the services of what hospice is without utilizing the name, anybody would accept the care. They would love to have someone come to their home a nurse, they'd love to have a volunteer, They'd love to have someone a home health aide 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 services and usually that is how we can get people to understand that this is really about, you know, creating a supportive environment for patients and their loved ones um 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 um and maybe allow them to, you know, recognize that it's not about just stopping, but more about support. So one more thing I'd like to touch on because family members all 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 um hierarchal or patriarchal way of having conversations that 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 sun 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 States where its autonomy, 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 ambiguity of who's to make decisions and they haven't had conversations with 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 and just talk about what's most important to them what matters most. Well, this has been an interesting conversation. Dr Lieberman thanks so much for joining me on this bonus episode of 20 minute health talk. Always a pleasure speaking to you, Sandra, This 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 Lieberman thanks so much. Get more expert insight from the leading voices in healthcare today. You can subscribe to 20 minute health talk wherever podcasts are available
