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SCCM Pod-513: Current Concepts: Effective, Culturally Sensitive End-of-Life Discussions

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This is the fourth episode of SCCM’s Current Concepts Series. Diane C. McLaughlin, DNP, AGACNP-BC, CCRN, FCCM, is joined by Kwame A. Akuamoah-Boateng, DNP, ACNP-BC, FCCM, and Collin Sprenker, PA-C, to discuss effective, culturally sensitive end-of-life care. Discover why this topic is a crucial current concept in critical care as the guests share insights and personal experiences in dealing with end-of-life care.

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Dr. McLaughlin: Hello and welcome to the Society of Critical Care Medicine Podcast. I’m your host, Diane McLaughlin. Today we’re joined by some friends of mine in Virginia in the fourth episode of our multipart series discussing the Current Concepts course and text. Get ready to dive into each chapter as we chat with the authors, providing an exclusive sneak peek into their expertise and course content. Do you guys want to say hello, introduce yourself and where you’re from?

Dr. Akuamoah-Boateng: Definitely. Thank you so much for having us. My name is Kwame Asante Akuamoah-Boateng, and I’m the lead advanced practice provider for the Acute Care Surgical Services Division at Virginia Commonwealth University Health. And my partner?

Dr. Sprenker: Hello, everyone. Thanks for having me. My name is Collin Sprenker. I’m a physician assistant with the Acute Care Surgical Services Department, also at VCU.

Dr. McLaughlin: Excellent. Thanks for joining us. Before we start, do either of you have any disclosures to report?

Dr. Akuamoah-Boateng: No disclosures to report.

Dr. Sprenker: No disclosures.

Dr. McLaughlin: All right. Excellent. What’s the title of the chapter that you guys wrote?

Dr. Akuamoah-Boateng: Cultural Sensitivity and End-of-Life Discussion.

Dr. McLaughlin: I have to ask, I think we’ve all had required mandatory learning at all of our institutions for probably the last 10 years, if not more. What makes this right now still a current concept?

Dr. Akuamoah-Boateng: To be honest, it is an interesting question because when we speak of the concept of culture, sensitivity, and end-of-life discussion, it’s an endless concept, right? Because again, one, you are looking at two domains, one being the culture influence on end-of-life and end-of-life itself not being just one defined process, but really the end of life is something that can be cultivated in so many different ways. So it makes it a current concept because it’s an endless discussion.

I think, after all these years, we are still learning more and more, and there’s no end when it comes to learning enough about the concept of culture because cultures come with different approaches. When we talk about culture, we are looking from the lens of people’s values and people’s behaviors, people’s traits, and the overall belief system, and these do change over time. Every given moment, we may think that we potentially have a better understanding of how a certain culture influences the discussion of end of life, but then a decade from now, it may be a different approach. That, I think, makes it more exciting and also definitely warrants a current concept discussion.

Dr. Sprenker: Yeah, I agree with Kwame. It’s something that we deal with all the time in the ICU. As he said, culture has evolved even, I would say, in the past almost 10 years of practice. I wouldn’t say that I’ve seen some of the gender issues that we see now and gender changes that do influence some people’s end-of-life decisions. As time goes on, culture changes somewhat, and it always stays current.

Dr. McLaughlin: I think that’s really well said that, even through the course of my career, I think I’ve seen some changes occurring and definitely, reading your chapter, I’ve seen some of that discussed. To let everybody else in, what are some of the core principles or concepts in your chapter that you believe every healthcare worker should know?

Dr. Akuamoah-Boateng: I think we had listed a couple of domains looking at the culture awareness, right? Just really being open to recognize that there is a lot of influence in how culture plays a role when it comes to end-of-life discussion and recognizing the different cultures that we may be exposed to as clinicians every day. Then also the cultural knowledge. Not one particular culture fits all culture, right?

It’s important that we truly have more of an open mindset in learning the various different cultures that we become exposed to. That obviously goes into the third component, which is the cultural encounter. The more we are exposed to the diversity of different cultures, I think that’s why DEI is such a very central piece when it comes to care delivery. The more we encounter different cultures, I think the more we’re able to really provide a more culturally sensitive approach to end of life.

Then, like we rightly said, what we do in our various institutions, which is the training and the skill set that annually all of us probably have been exposed to. Now that is basically the fundamentals, but yet I think what we need to learn is that we need to still build different skill sets, different assessment approaches of how we interact with different culturally diverse populations. Really having a sincere pursuit to learn and develop an in-depth understanding of each exposure or each encounter based on the differences we go through. I think that desire is one of the things that, to me, I really believe that it is essential in how we approach this issue of cultural sensitivity when it comes to end-of-life discussion.

Dr. Sprenker: Yeah. Just to piggyback off that, I like the last domain, cultural desire. I think that’s probably the one component that most clinicians, if they don’t have any of them, may not have that one, the desire to actually pursue knowledge of other cultures. That may be part of their training, but actually wanting to learn that, I think, is a really important part of being a clinician.

Dr. McLaughlin: We all know somebody who kind of ignorantly has said, well, you know, we’re in our country and they should learn things the way that we do them. But it really is tone deaf to where we should be right now from a societal standpoint.

Dr. Akuamoah-Boateng: Right, right. Very true.

Dr. McLaughlin: This chapter really discusses end of life. Can you talk about how the book addresses these challenges of cultural sensitivity in those discussions and maybe provide an example?

Dr. Akuamoah-Boateng: Definitely. The first approach, if you go through the chapter, you learn that there are different processes that we ought to be considerate about when we are approaching the issue of culturally sensitive end-of-life discussion. The learning approach itself is the first step, and the things that we ought to be considerate about or even consider prior to going to the discussion, one being knowing your own biases you may have toward a certain culture.

One of the things that we did address is looking at the spirituality of things. In many patients, spirituality plays a huge role when it comes to end-of-life discussion. You may not share the same spirituality or the religious values, but recognizing your own personal biases before you go into that discussion may play a huge role because, again, some patients’ spiritual values may play a huge role in how they make decisions relating to end of life, and to be able to better support the patients and the entire community around the patient is really recognizing what are the things that are important to that patient.

So it is the process, learning the process, and what are the things that you need to be mindful of or be considerate of before you actually go into it? That really begins with you evaluating yourself and looking at what are the biases that you potentially may have so you can be very open-minded and be able to support the patient through this challenging time and situation.

Dr. McLaughlin: Is there ever a time when there’s a limit to cultural sensitivity at the end of life? I work in the neurocritical care unit and I’m aware of some cultures that don’t believe in brain death, though we know physiologically this is in fact a true thing. How would you approach something like that?

Dr. Akuamoah-Boateng: Very good question. I think if you look at the scenario I presented in the beginning of the chapter, it addresses that. That’s why I made mention of spirituality being one of the key components of end-of-life discussion that I think, in healthcare systems, we try to deviate away from, but for the patient, it actually is a key influence of how they make their decisions. So yes, correct. At some point, it may be very black and white that this patient is not going to survive and we need to proceed with comfort measures.

But what I’ve seen is that usually if you’re able to acknowledge the perspective of their faith, and again, it does not have to be the clinician to really do this. This is why we made a lot of encouragement of looking at a multiprofessional team. This is where the chaplain plays a huge role and see if that could be the question that we are not truly answering. In the Muslim religion, for example, one of the things that we emphasize is that, when it comes to death and withdrawal of care, there is that barrier of, have I sinned against God.

Trying to at least engage someone with the same faith, an example being the imam and having that person be part of that discussion and creating a community around that discussion so that it helps facilitate the end-of-life process that we are all here to support. I think if we’re able to make it a community-centered approach, whereby the multiprofessional group are very engaged in ensuring that every layer of barriers is really acknowledged and addressed, I believe we will have a better approach.

That’s why this chapter is very vital. We will have a better approach to end-of-life discussion. But if we neglect the areas that may be more important to the patient and family, then there is that barrier or that stronghold that they are still not able to see beyond the fact that there is no survival in this case.

Dr. McLaughlin: It seems like this is something that should be put into place everywhere. We should be able to provide culturally sensitive care. What are the challenges that seem to exist for healthcare workers to do this, particularly in the critical care setting?

Dr. Sprenker: I think, piggybacking off of Kwame’s answer for one of the prior questions, leaving our preconceived notions and biases behind and allowing patients to make decisions that we may not agree with ourselves, from what I’ve seen, is one of the biggest challenges. You’ll hear chatter of your other colleagues comment on the side, not in front of the patient or the family, but comment on the side how what they’re doing is inappropriate. It takes a leader to shut down that conversation and educate and bring them back to what it means to be sensitive to their culture.

Then I would say the other challenge that I’ve faced, and I think all of us have faced, is trying with all of our energy to get patients better, realizing that we do have limitations in our technology and what we can do, then balancing that with the wishes of the family and knowing when to make that transition, get the interdisciplinary team involved, have open discussions with families and just have that balance without getting too emotionally driven, even though obviously we’re all emotional beings. It’s definitely very tough for new providers, but it’s something that I think we can all strive to get better at.

Dr. Akuamoah-Boateng: One of the things I wanted to add to this is, we have a set time period that we have to renew things like CPR, ACLS, etc., so we can be very effective at it. I think that is one of the things that, when it comes to the discussion about end of life and being culturally sensitive about it, usually it’s more the going through the modules and just trying to answer through the modules.

But I think we need to really start to shift the spectrum a little bit toward really life-practical experiences where we really have practical discussions as a team and practical scenarios. How do we handle A, B, C, and D? Can we debrief to look at what we did better, what we could have potentially added, or what probably influenced our approach?

I think we don’t have that practical approach when it comes to this very important concept. So, because of that, I think, after you do the training through these modules that we do in our various health systems, when the really life-practical issues really happen, it becomes more of a foreign approach and very challenging to be able to align, to see how best you really approach challenging situations like this. But I think if we address it in a way that is more simulation centered, I think we will potentially all build more skill sets in these areas.

Dr. McLaughlin: That’s really interesting, especially the comparison to BLS and ACLS training that we do. It actually kind of fishtails into my next question, which is what are some strategies that we can use to help improve the skill set?

Dr. Sprenker: Some practical strategies from the book that healthcare professionals can use to improve their communication, I would say having these conversations early with the families is particularly helpful. A lot of times we neglect these conversations until the patient’s on three vasopressors, on max vent settings, and very tenuous, can’t be moved for any scans. Then we tell family, well, we need to probably talk about comfort care.

I think bringing up these conversations earlier, maybe not on every single patient, but the ones that we have kind of a notion that maybe they have risk factors. Another reason it’s important is, before they get intubated or before they’re delirious or whatnot, it’d be helpful to have the conversation actually with the patient rather than the family because once those things happen, then we do have to rely on families who may or may not have had this conversation with their family members and it becomes much more difficult.

Another practical strategy I can share is having open conversations regarding prognosis, even though it may not always be fully understood, to the best of our ability, bring up those kind of statistics and data sets that can help families have some realistic expectations of what could or could not happen based on one path or another.

Then I would say the last practical strategy that we discussed in the book chapter is identifying what factors that the patient considers a good death. It takes the conversation one step further, not just, do you want to be a full code, but would you want family here? Would you want to be alone? Would you want, you know, we have dogs on call, things like that, to kind of facilitate that transition. I don’t think that that’s something that we typically, or routinely at least, ask our patients. I think that’s something that we can all kind of strive to look for.

Dr. McLaughlin: You mentioned risk factors and, when you see certain risk factors, having these conversations early, do you mean clinical risk factors of deterioration or do you mean some signs that there might be some cultural differences that we need to acknowledge early?

Dr. Sprenker: I would say both, definitely clinical risk factors but also, I think we shouldn’t just say, oh, because this patient is this or that faith or this or that culture, we should be extra sensitive, we should be sensitive with every single patient, because we don’t know their life story, we don’t know what they’ve been through or all that history, at least not yet, so I would be hesitant to say that we should identify at-risk cultures, because I think we’re all dealing with our own things and we have our own ways of navigating end-of-life care. I think I was more leaning toward clinical triggers and clinical risk factors.

Dr. Akuamoah-Boateng: Yeah, it’s a very good question and I love your response to this. But also the culture concept, right? There are some cultures that may not be well exposed to the clinical team, right? We experience that. For example, if you encounter a situation where there’s that language barrier, and there is not a lot of family support around the person, we need to recognize that as being one of the risk factors that warrant us to really start having an early discussion, getting the right set of people. There are community resources that I believe some healthcare centers do a great job influencing the community in these areas.

That is an approach that, I think, the more we’re able to be mindful of that, there are some areas that they may have a singular type of community of people who have these very similar cultures. So maybe identifying the leader or some leaders within that community and seeing how the health system can potentially build some partnership and network of resources that, in these cases, it is not really just the healthcare team versus the patient.

In the middle, you have a huge wall because we will not understand fully the culture on the patient side and vice versa because of language barriers and everything else that Collin just made mention of may not also be able to get the patient to truly understand or the family to understand the current state of the patient’s illness or the severity of illness. So I think engaging a community or network to help mitigate these risk factors will be very essential.

Dr. McLaughlin: I think the resources available are going to be very different dependent upon where you are. If you work in a big teaching hospital in an academic setting, you might have more resources available. But what if you’re somewhere in the middle of the country, that’s a really small hospital and typically you’re in a community of one very specific type of person, what do you do when somebody hits the hospital walls who is completely different from what you know? Are there resources that you can recommend beyond the community, something online, something that SCCM has?

Dr. Akuamoah-Boateng: Well, I think definitely, from the provider standpoint, this is the first approach. Purchasing this book and reading this chapter is the first approach because, again, there are quite a lot of resources that are already in this book chapter that potentially will give a lot of clinicians much more guidance on how to address these cases. Because I definitely put a scenario in there that was a real scenario that truly did happen and, looking back on it and seeing how we could have done things a little bit different in our debrief, was as simple as really recognizing this person’s faith and engaging the leadership and their faith into this discussion. It would have potentially alleviated a lot of the challenges that we had at the end.

So you are very correct. I think, if you are in a small hospital, that may be challenging. But again, it goes back to what I said earlier, exposing yourself more to the knowledge, more to the skills, more to the culture encounters and the culture desire.

Dr. McLaughlin: I’m going to stop trying to steal content from the book. Can you give us another, you said there’s at least one or two anecdotes within your chapter, but can you tell us another personal experience? There was a moment where the communication that you had with the patient and their family really impacted their end-of-life experience.

Dr. Sprenker: Early on in my career, I had a patient in the medical ICU who was suffering from end-stage interstitial lung disease on high-level oxygen, and the pulmonologists were recommending moving toward hospice. The patient would often share his Christian faith when I would round on him, but he was also at the same time very discouraged by his condition. It was getting to the point where he was finally ready to make that decision to move toward the palliative suite.

I was rounding on him late in the afternoon and I offered to allow him to have the chaplain come by to offer any services, given that I remembered his Christian faith. He actually had noticed that I wear a cross on my neck, so he actually asked me if I was willing to pray with him, and I obliged, although I was hesitant because that’s always kind of, I don’t know, somewhat of a taboo thing to do in the hospital, at least back then. But I did and I prayed with him and he told me that, after that moment, he felt complete peace of transition to comfort care. That was the last time I saw him, but it made me feel like just being there, noticing those little things, we were able to connect in that way.

Dr. Akuamoah-Boateng: That’s a great example. I have an interesting one as well. Mine was a patient who was in his early 40s and had a pretty raging acute bronchitis that became hemorrhagic and progressed to become worse and he ended up on ECMO. After being on ECMO, he ended up on CRRT, acute kidney injury, and just continued to decline. It got to a point where he just couldn’t recover or sustain his life any longer.

I remember it was 2:00 in the morning and his three kids had to walk in to come say their final goodbye to their father. It was very challenging because the wife was not ready to let us withdraw care. They have three little kids and the kids walked in the room tearing, very upset, very sad of losing their father. The wife kept saying, I cannot make this decision. Being a father myself, seeing these kids crying, unfortunately, I started crying too. I remember holding one of the younger kids and just holding his hand and saying, this is very difficult, this is very hard.

All I could do is just look at their experience and I was just in tears. Long story short, I’m not sure what they saw, but I think the fact that they saw that I recognized the pain they are going through and the emotions that probably it wasn’t planned. It was just, it just started expressing just because, again, I’m a father of three kids. It gave them a sense of comfort. It was very strange, but it gave them a sense of comfort to say, you know what? We believe that you guys have done your best and it’s okay.

They then proceeded to withdraw care and I stood with them throughout the entire night. Even when the husband/father was deceased, I helped with every step of the way because I recognized that my presence meant that much to them. Sometimes it’s those little things that, culturally, play a huge role to that family, it’s recognizing that they are not alone, but the provider team is also part of them. I think sometimes it’s those little things and engaging yourself to be part of the family in a way that will show them that we are all one team. That truly did make a huge difference for them.

Dr. McLaughlin: You both share these stories that are super-touching and show the impact that you had on these patients and their families. What’s interesting is, Collin, you mentioned that it used to be taboo. I think we’re at a time that we’re trying to find a balance between being so emotionally invested that it’s actually causing some strain and burnout on the healthcare system versus being there and providing that personal touch and being culturally sensitive. How do you balance these two things?

Dr. Sprenker: Yeah, I think it is a tough balance, and I think being cognizant of your own mental health and limitations is important because you can become so emotionally invested and you also have x amount of patients to take care of. So being able to know your limitations, but also trying to keep that compassionate fire in you to be there for your patients. Maybe for a new provider, it’s a little harder to find that balance. But once you’re more established, I at least know for me, I’m able to take that extra 10, 15 minutes with the patient and talk with them. I think Kwame would probably agree with that one as well.

Dr. Akuamoah-Boateng: Definitely, definitely.

Dr. McLaughlin: What future developments do you see or hope for in the field of culturally sensitive end-of-life care?

Dr. Sprenker: Other than what Kwame already mentioned about in-person training, I thought a trigger in the EMR to identify at-risk patients to at least suggest getting the palliative team involved. I know it’s an interdisciplinary team, but most hospitals at least have a dedicated palliative team. I think it’s generally not part of the rounding tool. It’s really not like something we mention on all patients, but I think it might be something that could be brought up on almost every ICU patient, saying, are there any cultural needs, are there any spiritual needs that aren’t being addressed? It’s kind of keeping all team members in the know of those wishes.

I think one cohesive idea of those things would serve the patients better, especially if it’s identified early before things are escalated with interventions and procedures overnight, things like that that definitely get missed in translation and signout and from providers coming and going.

Dr. Akuamoah-Boateng: What I will add to it as one of the things Collin just made a mention of is a spiritual belief assessment. Usually it’s more nurse-driven, but I think it needs to be multidisciplinary or multiprofessional driven, where we actually look at it and incorporate some of the key components into our everyday discussion about patient care, so looking at what may be the spiritual stuff like faith or what may be the level of influence that their faith may play a role in some of the decision-making.

What community, I keep going back again to the community, what community I’m part of and how to best address the issues that arise because of their spiritual belief. I think if we’re able to really make it part of these discussions on our care delivery on a daily basis, I believe it will help alleviate and also be able to capture some of the barriers early.

We can also be able to address it as a unified team and not just when an issue arises is when we really want to find the best way or solution. Because we know that it plays a huge role. It plays a huge role in the patient’s decision-making so why not start early to really make sure that it’s part of the conversation?

Dr. McLaughlin: Well, these are some really great ideas, and it really tells me that, even though we have our mandatory training, we have a lot more work to do to provide the care that we really want and patients deserve. We really only have time for one more question. What I’d love to finish with is, as experts in your field and authors of this chapter, what is the most significant takeaway or lesson from writing this?

Dr. Akuamoah-Boateng: I would say this: Culturally sensitive end-of-life discussion matters. It does matter. It all boils down to us continuously learning and keep learning and keep learning and keep learning. The more we learn, I think the better we become a holistic team and a holistic clinician to be able to better support our patients who may be dealing with the issue of end of life.

Dr. Sprenker: Yeah, I think that’s a great point. Then I would add that just listening to your patient before you’re so quick to speak or so quick to just tell them what their labs are will really make a difference in their overall experience in the hospital, but also allowing them to transition well to end-of-life care if that is where they’re at. Because if they’re not at it now, they will be at some point. I think we can all learn from each other and support each other in this endeavor.

Dr. McLaughlin: Well, thank you guys so much for joining me today. I think we all learned a lot. This concludes another episode of the Society of Critical Care Medicine Podcast. Don’t forget, if you’re listening on your favorite podcast app and you liked what you heard, consider rating and leaving a review. For the Society of Critical Care Medicine Podcast, I’m Dianne McLaughlin.

Announcer: This educational activity is supported by the SCCM Current Concepts Committee. Dianne C. McLaughlin, DNP, AGACNP-BC, CCRN, FCCM, is a neurocritical care nurse practitioner at University of Florida Health Jacksonville. She is active within SCCM, serving on both the APP Resource and Ultrasound committees and is a social media ambassador for SCCM.

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Knowledge Area: Professional Development and Education Ethics End of Life