Thank you so much for coming to this panel. So I was given the topic of cultural barriers to end-of-life discussions, both foreign and domestic. I am going to have a clicker, just a mouse. Okay, I have no disclosures for this talk except that I'm a co-chair of the Ethics Committee and the video that you're going to watch was directed, was my debut in direction and production. So I'd like to submit that the title should be slightly more nuanced and instead of barriers, we should consider cultural considerations to end-of-life discussions, both foreign and domestic. And the reason is obvious that these are not barriers. Culture doesn't mean that it's something foreign. We all espouse our own cultures. We come with a background which makes up a culture. You have cultures of organizations, cultures of institutions, and personal culture as well. So it's not just something that is something that's come from across the border. I'd like to start with this study that we did and published and it was actually a thought experiment. It was an experiment in behavioral sciences, which is where my specialty lies. I've done a master's in ethics based on behavioral sciences and sociology. And I'm an intensivist by training. So most of my work is in the intensive care unit or the critical care unit. So this study is, this is the citation for this study. It was done on compassion, which I was funded for, to look at compassion. And in the next slide, we have a video which I'd like to share with you. It's a 45-second video, please bear with me. The actors and actresses are residents, nurses, and the director of the Sim Center. And I am directing. So please keep your criticisms for later. Her vasopressor is at 2.4. I think we need to have surgery or IR, take a look at her. We got to get the bleeding under control. But Dr. Rogers, she's post-cardiac arrest and on four maximum dose vasopressors. And her pH is 6.8. I think this is too tall. She needs to go to the OR to control the bleeding. Her wishes were not heroic measures. She was not aware of what she was saying. Besides, we can't keep her in the ICU. We need the bed. Should we call her husband or son at least and have them come and sit with her? Her stomach is really distended and she's in pain. Could we give her some morphine? Morphine is just going to kill her. We need the bed. We need to get her out of here. So with this video, there are many nuances. There are many aspects of not having compassionate care. And some of them could be called bias, prejudice, or just not being a nice person. But these are things, the story, the script was made by actual anecdotes, not all in the same scenario. So if you could just reflect on that, keep in the back of your mind as I go through the literature that I will present to you, the evidence that there is present in literature. So in 1999, Peter Singer, who is one of the world's famous intensivists, coined the term of quality death or quality end-of-life care. And he defined it as receiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden, and strengthening relationships with loved ones. Now keeping that in your minds that this was in 1999. However, it's well documented since then that structurally vulnerable populations have greater difficulty accessing equitable and culturally safe end-of-life care. There are many reasons for it. There's a lot of literature out there. The domains which are identified as contributing factors to these disparities are systemic racism, cultural differences around death and suffering, implicit bias, language barriers, issues of equity continue to disproportionately affect different populations, as we know, and especially racially marginalized populations, immigrants, low-income communities, Medicaid patients, and foreigners. And each of these have a ton of literature around it. Now it's also present in the images that we see in our imagination. So I read this study, which was very interesting. This is where somebody looked at all the movies or Hollywood documentaries or anything that's made around end-of-life care or depicting a dying situation. And they went through 35 of these. And they did a qualitative analysis of the study of the movies that was scripted. And they demonstrated racial biases in these documentaries, focusing on end-of-life care that are similar to biases found in other media representations. While white patients often appeared as central characters in the narratives presented, black, indigenous, and people of color patients were more frequently marginalized and given much less opportunity to reflect on their own personal narratives. And that is very important as an aspect of culture. Palliative care as a specialty, we know it's everywhere in our ICUs. We trigger a palliative care consult. However, these are typically embodied beliefs, policies, and practices that encompass Western perspectives of death and dying. Moreover, it is important to understand the historical impacts of broader discrimination and biases in this space. Descendants of, for example, in this study, descendants of Chinese and South Asian ethnicity, South Asian immigrants, and recent immigrants from minority ethnicities had the highest rates of aggressive end-of-life care and were much more likely to die in an ICU. And our own study, which was 10 years database review at Beth Israel in Boston, where I work, we found differences in end-of-life care in the ICU. And this showed that black and Hispanic patients changed their code status, or their code status was changed for them earlier in their ICU course. And this is statistically significant, of course. But still received an increasing intensity of interventions with fewer palliative care options and more ethics consultations. So just reflect on that, that usually when you call an ethics consultation, there's some level of disagreement or conflict that's going on, or some communication lapse. Demonstrating a substantial disparity in high-quality, what we call high-quality end-of-life care. Limited access to or use of translators and lack of representation of health care workers also perpetuate barriers. So when people see people taking care of their loved ones who are dying who are not like them, that is a cultural inappropriation as well. And I know we'll talk about interpreters, but what is cultural appropriation? Patients of different cultural backgrounds often have differing views of pain management, family involvement, communication, and preference for location of death. I worked in Singapore for 10 years, and in the Chinese philosophy, there's something called filial piety, where it is not respectful to talk to an older person in your family about death and dying. It's just not done. You don't think about it, or you don't talk about it. It's considered disrespectful by the children who may be adult children. So these are things that we need to consider when we're taking care of such patients within our walls. In a different study that I published on narrative ethics, we used an often recurring scenario with black patients and their families in our ICUs, especially in a place like Boston, where the role of racial factors contributed to the mistrust that is present in the interaction. And from the get-go, this mistrust affects the decisions made at the end of life. And this may be a perpetuating, triggering cycle that goes on. In some cultures, pain may be viewed as a part of the dying process and tolerated, resulting in lower uptake of pain medicine. Some cultures discuss pain and end-of-life decisions collectively. This is called a respective autonomy instead of a personal autonomy, where you do involve family members in the decision. Many cultures use indirect communication rather than direct communication, such as nonverbal behaviors or the tone of voice in which you talk about death, understanding the underlying context. So there is no magic pill. Cultural perspective refers to the way that people view the world around them based on their cultural background, experiences, and beliefs. When we interact with anybody, we bring to the table our culture, and that is our personal culture but based on our background and what we have grown up with. It shapes the way we understand things and the lens that we use. And if you read social psychology, it's fascinating. It's called ethnocentrism, where you think that your culture is the superior one, and it could be any culture that thinks that way. I worked in the U.S., I worked in Pakistan, and I worked in Singapore. Each culture thinks that their culture is better than everybody else's. It means that we think our cultural practices and customs are the correct standards that their culture should follow, and we naturally see our own culture as the anchoring point, and that's why prejudice arises, because everybody else is the outsider or is different. And this is something we teach our children, and it's something very basic, but when you look at all these disparities and the basis of the mistrust, the underlying theme that comes out is the difference in how we perceive the other person and their choices. And how do we understand perspective? Cognitive empathy enhances perspective. Getting the experience from the lens of the other person, reflection and reevaluation of personal bias, and perspective-taking is an essential competency because it enables a better understanding of complex issues, of conflicts, with various actors and different points of view. So there's a whole study and a whole field of science behind this. But in conclusion, since we don't have that much time, I'd like to say that it's important to understand, study, implement, and measure cognitive empathy, and we are currently in the process at the European Society, where I'm part of the Ethics Committee, of revising our end-of-life guidelines to actually measure what is culturally appropriate decision-making. And in that, we can address these differences in cultures. Voices of patients and families are very important and should be studied by culturally aligned people. So we are actually, and Dr. Barwais is one of the speakers, part of the study that I'm trying to apply for funding to NIH, where we're actually not just looking at data from Black and Hispanic patients who are dying in our ICUs, but that data will be looked upon by people who are from the same community. Because we look at data and say, this is how it should be, but that may not be acceptable by culturally appropriate people. And the quality of dying is nuanced. We have to understand that and should be understood within each perspective.

cultural considerations

end-of-life care

cultural competency

cognitive empathy

systemic racism