Bringing Awareness to the Racial and Ethnic Disparities in Palliative Care

Bringing Awareness to the Racial and Ethnic Disparities in Palliative Care



good morning everyone I'm delighted to present our next presenter for Grand Rounds in our second-to-last Fellowes Grand Rounds presentation of the year dr. Kevin Smith graduated with his bachelor's degree in science pre Professional Studies and anthropology from the University of Notre Dame following his undergraduate studies he then got his medical degree at st. Louis University School of Medicine and later completed an internal medicine residency at Duke University and there he was also selected to be an assistant chief resident his clinical interests revolve around both the practice of hospital medicine and palliative care as well as exploring social barriers and determinants of hospice and palliative care and underrepresented minority communities [Applause] good morning everyone and thank you for joining me here today over the course of the next 60 minutes I would like to spend a little bit of time talking about health inequities and specifically as they relate to racial and ethnic disparities in palliative care among the african-american community I have no relevant disclosures before I begin I would like to tell you a story about a case that impacted me during my time and residency this is the story of a 57 year old gentleman who was a disabled veteran and he was also an individual who had suffer from an ischemic stroke that stroke resulted in him having expressive aphasia right hemiparesis he was predominantly bed bound required in taro nutrition and he was dependent on others for almost all of his activities of daily living this gentleman unfortunately was also diagnosed with AML he did not have any formal health care proxy he did not have a wife nor did he have any children but he did have a very extended family predominantly his siblings that were his primary medical decision makers and ultimately this patients oncologist recommended against pursuing chemotherapy but instead recommended hospice care and palliative care services based on his functional status and his family were adamantly opposed to this for a couple of different reasons the first was that this patient they stated that it was sort of against their religious preferences and that by pursuing hospice and palliative care it would have resulted in them not trusting and having faith in God the second reason was that they stated and they acknowledged out loud that they wondered if perhaps the recommendation from the doctor would have been different if their brother would have been white and so the reason I bring up this case is because I think that it highlights several themes that I would like to talk about going forward and over that this is a topic that is near and dear to my heart for both professional reasons and also personal reasons I also think that it is an important conversation to have especially giving the evolving landscape of the african-american population within the United States my objectives are threefold first I would like to identify factors and social determinants that contributes to disparities in palliative care within the african-american community next I will like to illustrate how these factors negatively impacting to Life Care and then explore solutions that perhaps we as palliative care clinicians can help implement with the goal to hopefully transcend these cultural barriers and many african-american patients and one of the things that I will say is that it is not my intention as a result of the story to try to describe african-american culture as a monolith because we know that that is not the case but one of the things that I would like to do is to shed light on the perspective and the narrative and the lens through which many african-americans have and to show you how that can impact their interaction within the healthcare system and I think that it is important to understand these is because if we do not recognize some of these barriers that exist then ultimately it inhibits us from providing goal concordant care and adequate and high quality end-of-life care for many of our patients one of the things that we know is that in the United States african-american Americans experience poor access to medical care than their white counterparts and there are numerous social determinants that contribute to this and they range from income being under insured under uninsured living where there are areas of food deserts and the list goes on but even after adjusting for socio-economic factors and access related mediators these barriers persist any other thing that we know is that the social determinants of health impact many African Americans throughout their entire lifespan for example African Americans have a 44% chance more likely of dying from a stroke than whites Africa merican women are 40 percent more likely to die from breast cancer and men are twice as likely to die from prostate cancer and this list by no means tells the complete story we recognized that disparities exist in the prevalence of HIV obesity asthma furthermore we know that these disparities not only impact African American adults but they are also seen in African American children across all age groups and there is a there is a quote by the author and poet Langston Hughes where he starts off by stating that there is no color line in death and he attempts to convey a couple of different points the first is that we all must die the second is that in death we are all equal however what I would like to contend to you here today is that getting there is not a process that is characterized by equity and that furthermore for many African Americans getting there is a process that is compounded by the inequities that exist throughout their lifespan so take for example one of the fundamental aspects of what we do in a spill as palliative care clinicians and also as and also for our hospice colleagues is we focus on symptom management and one of the major symptoms is pain management but also one of the things that we know is that there are disparities that exist in pain management across the lifespan for many African Americans including the end of life and these disparities exist not only with many african-americans reached not receiving adequate pain management but also these disparities exist across socio-economic status and in addition to that we recognize that there are also disparities that exist when it comes to even access to medications for example pharmacies and minority neighborhoods are less likely to carry sufficient opioid analgesics in comparison to looking at white neighborhoods and more affluent neighborhoods we also know that african-americans are more likely to be screened for substance abuse and we see that these disparities and pain management are seen across multiple different studies furthermore we know that these disparities are seen across patient settings they're seen across pain types whether we're talking about cancer related pain versus non cancer related pain they're seen across whether we're talking about opioid medications versus non opioid medications and they're also seeing across whether we're talking about traumatic pain versus non traumatic pain let's take for example this meta-analysis and systematic review that was performed a few years ago one of the most startling aspects or findings of this study was that african-americans experienced both a higher number and magnitude of disparities than any other group including other underrepresented minority groups one of the other things that I would like to highlight as well that I thought was equally profound was that belonging to the white race was associated with higher odds of receiving opioids in the emergency department even more so than a presence of having a traumatic injury if you were black and so we also know that one of the ways that we have or hospice is one of the ways that we have to provide good care for our patients and we also know that there is data that suggests that those disparities that exist in pain management across different settings actually dissipate when patients are enrolled in hospice however what I would like to turn your attention to you is that african-americans are significantly and disproportionately underrepresented not only in their use of hospice services but also how they utilize hospice care for example many african-americans have stated in the literature that oftentimes they feel coerced into rolling enrolling in hospice furthermore we see that many African Americans access it later in the course of their illness and impart this may be related to determinants that are impacted by access to care earlier on in their disease trajectory and moreover we also see that African Americans are more likely to have impaired function than our common our Caucasian counterparts by the time that they enrolled and there are several hypotheses and barriers that many people argue that contribute to why hospice enrollment and solo and they range from health literacy cultural aspects but also religion and spirituality there is a lot of data that highlights the fact that many African American patients and their families are unfamiliar with exactly what hospice services Intel and even beyond that they're unfamiliar with things such as where one can receive hospice services or how is covered and looking beyond even health literacy again we recognize that there are cultural factors at play and there is a lot of literature that shows that African Americans have consistent documentation for greater preferences for life-sustaining therapies regardless of their prognosis there is also a study that was conducted in the late 90s that demonstrated that many African Americans have a greater than three-fold increase and their willingness to tolerate a poorer function of status before downgrading their quality of life and let's also think a little bit about religion and spirituality for example in the case I talked about a little bit earlier there are some people that argue that African Americans demonstrate more religiosity and spirituality and as a result of that these are actually barriers that can impede not only enrollment in hospice but also affects things such as advanced care planning and one of the things that we know is that in addition to African Americans being significantly underrepresented and enrollment in hospice they are also there was a disproportionality and the number of African Americans that ultimately choose to disenroll from hospice and that was demonstrated in this particular study here and one of the things that we saw was that when comparing white patients to black patients across all deciles african-americans were more likely to not only disenroll from hospice but the same patient population were more likely to utilize to subsequently utilize the emergency department and be admitted to the hospital and there was a study that was done by dr. Kimberly Johnson who was a palliative care physician and studies health disparities at Duke where she looked at and one of the things that she found was that on average there was an span of 22 days between a time that many African Americans enrolled in hospice and in subsequently disenrolled and so in addition to understanding how cultural preferences for end-of-life care may influence hospice disenrollment one of the other important things that I think that is important to acknowledge and to better understand is what happens to these patients who ultimately decide to disenroll and what the fear is and what some of the literature supports is that many of these patients ultimately end up dying without access to high quality end-of-life care and one of the other things that I would like to point out is that we recognize that there are multiple factors that contribute to end-of-life inequities and we also know that these factors exist at various levels and some of the ones that I've talked about exist at the interpersonal level but we also know that they exist at the interpersonal and the system's levels moreover they are also interconnected and so I would like to spend a little bit of time talking about communication and the clinician patient interaction and less visit how this impacts these disparities at the end of life for many African American patients in this particular study here what the author's attempted to do was they had goals of care conversations with black patients and with white patients and they followed these patient populations over time and ultimately what they wanted to try to see was if as a result of those conversations did it actually result in goal comporting care at the end of their life and the results were actually pretty startling for some of the african-american patients in a study there was actually a attainment of some communication goals for example some of these patients after having these goals of care conversations stated that they were more likely to prefer symptom focus care and also more likely to prefer changing their Co status the DNR however for the majority of African American patients in his study they still ended up receiving more aggressive care regardless of their preferences and so what does this mean this means that regardless of them stating that they advocated for being DNR or DNI or pursuing comfort focused care they still ended up and they were more likely to undergo CPR intubation admission to an Hospital NICU and not enrollment in hospice and so ultimately the communication that occurred in this particular study did not result in gokhan courting care for African American patients but it did result in goal compartir care for the white patients and let's turn our attention to another study where and this the authors were their objectives were to compare end-of-life medical care that was experienced by african-american families to white families and family members of african-american patients were 60% less likely to rate the overall quality of care that they receive as being good or excellent furthermore they were less satisfied with the communication with the physician they felt that they were less informed and they also stated that their family they thought that their family receives less support overall by the hospital and by the physician and on top of that they were more than twice as likely to report not speaking to a physician despite wanting to do so and as we look at these studies one of the questions that you may be asking yourself right now is is Duty's results reflect the perception that these patients have or is there any actually objective evidence that shows that communication is poor for many African American patients at the end of their life and there was another study that attempted to evaluate and ask that very question and in this particular study what donna termed is refer to you are the relationship between the patient and the physician and troyius refers to the relationship between the patient the physician and their companion and what they did was they compared they compare consultations that occurred with african-american families and white families and they wanted to observe if there they wanted to observe the information given statements that were seen in those clinical encounters and what they found was across all groups including both the diet group and the triad group that and the african-americans families there were objectively less information giving statements that were either self initiated by the doctor or prompted by the patient and those encounters however on the flipside when there was actually racially concordance meaning that when there was a black doctor talking to a black family across all the groups there was more information sharing that was seen and then less also sort of think about the clinician patient relationship and the perception that many African Americans had after their clinical encounters and again what we see is that terminally ill African American patients gave lower ratings to the quality of their relationship with their physician and almost every single category what we also see here is that African American patients on average we're also less likely to have advanced care planning which includes a formal health care proxy and having end of life conversations either with their family or with their physicians and as we sort of think about these findings I think that they suggest important clinical implications for clinicians across all specialties in that they remind us of the heterogeneity and the needs and preferences of our different patient populations and again as we think a little bit more about advanced care planning one of the things that we also know is that African Americans are more likely to pursue informal planning as opposed to formally document their care preferences and again this is due to a myriad of different factors that take into effect they take into account miss truss poor communication health literacy and the list goes on but again one of the things that I would like to highlight as a result of this study is that there is not just one specific item that all of these things are interconnected and exists across different levels and so ultimately what does the majority of the literature suggests is one of the primary driving forces as to why many of these health care disparities exist at the end of life for our patients and the answer to that resolves of or gulps around poor communication and this is a model where the author's attempted to try to demonstrate how communication can hopefully result in goal concordant care and as we look at this we see that it may actually look very similar to what we do on a very on a daily basis in that we have goals of care conversations with our patients we attempt to better understand their prognostic awareness and their preferences and hopefully think about and try to assist with events care planning and our hope is that over time this can result and effective goal concordant care however what I would pose is that this model is incomplete and one of the things that we know is that communication with our patients is a lot more complex and it does a lot more nuanced and in a slice to come I will show you a more updated model to how we can better think about more effective communications but even as and just as the literature shows that poor communication is one of the driving forces as to why these disparities exist I would also argue that one of the major mediators as well has to deal with the role of mistrust and distrust within the healthcare system and I think that if we're going to talk about mistrust we must understand that this is rooted in history and we must also understand this from the historical perspective of slavery and this history isn't only impacted by slavery in and of itself but there is also ample sort of stories throughout our lifetime that shows abuses and medical experimentation so for example there is evidence where throughout our history slave corpses were used for education and research purposes and medical institutions including prominent medical institutions even here in the city there is also examples a physician using black slaves for experimentation to help advance their surgical procedures and even as we move beyond the history of the 18th and 19th century in this country there is even more modern examples of abuses of medical experimentation take for example the infamous Tuskegee syphilis experiment this was an experiment that was conducted over the span of 40 years from the 1930s to the 1970s by the US Public Health Service and the objective was to help me to evaluate the progression of untreated syphilis in african-american men and one of the things that we know is that the participants in this study actually thought that they were receiving free health care from the government they were neither informed that they had the disease nor were they informed that there was a treatment available that could cure it when penicillin was later discovered and we only know about this experiment now as the result of stories that were later leaked to the media by individuals who were participants in this study and so one of the things that I would like to highlight is that for African Americans the history of abuse is not a cultural artifact but this history of distrust within the healthcare system is something that is still felt today it is something that is still very potent and it is something that still permeates the hearts and the minds of many of our patients and these historical events that have occurred have not only taken place at the national level but also locally and segregation patterns are deeply embedded in Boston healthcare and I wonder if perhaps it is this history of mistrust that impacts and part why so few African Americans within the city a lot to receive their care at this institution and I would also challenge us to think about this patient narrative as we think about even many of the patients that still choose walk through these doors and think about some of the things that may impact again how their experiences and how they sort of interact with us as we come here and so what are some of the steps that we can do moving forward and how do we achieve equity as a relates to these disparities and one of the things to note is that equality is not the same as equity equality is treating everyone the same and it's Ramat and it tries to promote fairness however this only works if everyone starts from the same place and needs the same help equity on the other hand is giving everyone what they need in order to be successful and what we see within the literature is that one of the fundamental things that we can do to try to help bring more equity to these disparities is enhance our communication and one of the things that we know is that again communication is complex it's nuanced and beyond having ad-hoc conversations with our patients we recognize now the importance of fostering long-term relationships and building therapeutic alliance and Trust and knowing a person beyond their medical illness and it is only through after we and as I went through the combinations of after we accomplish these things and we'll share decision-making can we ultimately provide adequate end-of-life high-quality care and go concordant care and so what are some of the next steps that we can take moving forward and I propose a couple of different things the first I think is that we must practice cultural humility and cultural sensitivity we must recognize that an individual's live experiences are rich fair diverse and they're complex and furthermore we must be willing to step outside of ourselves and be open exploring the identities of others and cultural sensitivity are a set of skills and attitudes that enable us to learn about and to better understand people who are different from ourselves thereby becoming better able to serve different populations within their own communities and ultimately this goes back to understanding the patient narrative and one of the things that I would also argue and contend is that provider bias and stereotypes influenced many of the outcomes that we discuss and a benefit and perhaps a byproduct of cultural sensitivity is that it can increase our awareness of our own unconscious bias let's take for example this study here where physicians initially sort of expressed that they did not have any explicit preference for treating black versus white patients however after taking the implicit association test and there is an example on the right here ultimately what it revealed was an unconscious bias for treating white patients more favorably furthermore they were able to demonstrate through his study a direct association between offering more treatments white patients and less towards black patients and as we think about our biases we must recognize that as healthcare providers and may be difficult for us to relate to you because many times clinicians believe that biases and treatment do not apply to their own clinical practice but I would contend that compassion and end-of-life care ultimately requires that we as clinicians resist the urge to conveniently draw upon racial and ethnic stereotypes the next step that I were proposed is that sometimes we have to name the elephant in the room and when it comes to health inequities any suspects many times race and mistrust is that elephant and we must learn and we must not avoid talking about these issues with our patients and sometimes by simply acknowledging that they may not have a reason to trust us and by validating their perceive or perhaps actual past experiences can ultimately help forge an alliance that is ultimately rooted in trust and the other aspect that we know is that patient-centered communication that revolves around respect and establishing rapport with our patients and the long-term relationships and good communication can help overcome barriers especially those that are seen and racially discordant relationships and so for a second I would like to turn your attention to the quote here at the bottom and this was actually from a paper that was written here by an individual on the ethics team here at MGH and they're in our audience right now and the sort of title of this paper was can I trust him to do everything on sort of exploring the role of distrust and ethics committees consultations in African and African patients and one of the things that I would like to sort of highlight in this particular quote and after speaking to this individual was one of the things that they taught me was that they've had numerous patient encounters where as an a member of the ethics team and sorry going backwards for a second I should also recognize that this person is of Haitian descent and they had numerous conversations with family members as part of the epic scheme that involved not only themselves but also the palliative care teams the primary teams and the patient and her families and at the end of these conversations as people were exiting the room whether it was a family member or the patient they pulled this individual aside and said can I actually trust what they're telling me and the reason that they asked them that is because he was someone that looked like them and that in and of itself was enough to sort of foster trust and so I want you to think for a second about perhaps clinical encounters that you may have had with patients and her family members and where you were talking about end-of-life conversations and this was the question that was permeating through their minds during your conversation and perhaps the family member or the patient openly acknowledged this but also think about the many of times that you have had these conversations and you didn't even know that this was something that was on their mind and so one of the things that I think that this argues for is for increasing our racial diversity within the workplace and there is ample literature across the board that shows that this can enhance communication it improves health outcomes it reduces health disparities and also in another self it creates it increases creativity and problem-solving within the organization and community as a whole and the next steps what I would argue is that we must recognize that factors that have historically been considered barriers are actually assets and so before I spoke to you that many individuals have argued that religion and spirituality are actually impediments to providing goal concordant care and enrollment in hospice and perhaps even with advanced care planning but one of the things that we also see within the literature is that for many of our african-american patients religion is a major source of positive coping and a major source of strength and many patients will argue that they prefer to be in a place where their spiritual values and beliefs are not just tolerated but they're also embraced and so there is a study that was done by Balboni who demonstrated that african-american patients who received spiritual support from their medical teams were actually less likely to undergo intensive end-of-life interventions and there was also a sister study that actually showed some contrasting data and that those who receive a high degree of spiritual support from their communities who were more likely to undergo end-of-life interventions and so I asked you how can we bridge this gap and what I think is one of the solutions is that we must form partnerships with faith-based communities take for example in this study the Centre for practical bioethics partner with black congregations across the United States and over nine different churches and six different cities over a span of two years and one of the things that they did was they educated many of their parishioners about the importance and the role of advanced care planning and these parishioners became advance care planning ambassadors and again over the span of two years they have numerous events at their churches and congregations across the country where they were promoting the important role of advance care planning of palliative care and of Hospice and over that course over 700 individuals attended these events and so what I would argue is that this is something that is incredibly underutilized as we think about improving the health literacy of African American patients and I think that this is an opportunity to improve communication about palliative care and hospice care and one of the other things that many have argued for a long time that is potentially an impediment for end-of-life and goal comporting care for many African American patients is that oftentimes there are multiple stakeholders and there are multiple individuals who participate and the health decision made but one of the things that we know is that for many african-american patients they trust their loved ones to make decisions and oftentimes this can take precedence over independence and patient autonomy and I think that we must recognize that we cannot practice in a model where one size fits all but we must be it we must become comfortable with the fact that in dealing with many African American patients again there are multiple individuals who are involved in the overall aspect of their care and I would like for a second to return to the case that I talked about earlier so again this was a gentleman who was a disabled veteran who had a history of a stroke was dependent on others for his activities of daily living and he was diagnosed with AML and his family wanted to pursue aggressive life-sustaining treatments but his medical team thought that based on his functional status he was not a good candidate for it and what happened over time is that his family ultimately decided to transfer his care to a different hospital that was predominantly in a black neighborhood and also there were member there was a member of this patients team or a member of this patient's family who also strongly advocated for pursuing palliative care consultation and hospice but the family remained adamant vehemently opposed to this and over time this patient quickly became transfusion dependent and require multiple hospitalization Bizet's and also this individual became septic and ended up in the ICU and it was only towards the very end of his life as he was having more symptoms where the family decided ultimately to perfect to pursue a palliative care consultation and ultimately enroll in hospice unfortunately this patient died a day before he was scheduled to be discharged the hospice service and the reason that this patient encounter is near and dear to my and sticks loose me even to this day is because this patient was my uncle and that family member who was advocating for hospice was myself and I told the story not to garner sympathy but one of the things that I would like to highlight is again to understand how pervasive that patient narrative can be but even in the setting where I as a doctor as an african-american and as a family member I was unable to sort of overcome some of those barriers and believes that my family members had in this particular case and so if that was challenging for me I want you to sort of think about again the experiences that many of our patients have when we're having those conversations with them here at this institution and across our field on a daily basis and in summary I would like to leave you with the fact that we know that there is a color line that exists at the end of life and at these health disparities and inequities that are seeing impact African Americans more so than other racial and ethnic groups and that ultimately the etiology for these factors are multifactorial and they exist across different levels and one of the major driving mediators is a history of distrust and mistrust that is rooted in our history and also poor communication and while we cannot erase our history we can help to enhance our communication skills and work to establish and build long term relationship with our patients and ultimately increase our workplace diversity and last we must recognize that factors that in the past that we have perceived to been barriers are actually cultural assets and they can assist us to overall help reduce some of these disparities going forward and so I would like to thank you for your attention and your time today [Applause] Kevin thank you so much that was really fabulous I want to turn it over and see if there are questions and comments coming thank you very much excellent moving presentation and really appreciate it I wanted to ask you you know in the with all of the backdrop that you described and when we come into situations and ethics consults at MGH in other places as well colleagues will say when a patient is actually approaching really approaching end-of-life say in the final days of their life in physicians are wanting to change in working with them up through that point to to try to collaborate as best as possible with the family to reach a more palliative approach to care but when that doesn't seem to be coming about in the situation is it beneficent towards the patient or is it overly paternalistic for physicians to limit life-sustaining treatment to allow the patient a peaceful death in one of the things I worry about is are we actually by doing that are we actually cutting in deep to the heart of the patient and family or are we able to maybe in their bereavement maybe right in the final moments they might see that a peaceful passage of their loved one is a good thing but but it's a dilemma right I think that's a very important topic I think perhaps you and I have spoken about this a couple of times before and I don't really know if there is an easy answer to that I think that again many times what it comes down to is communication with the patient and perhaps trying to understand why again sort of what we do in a daily basis and perhaps under try to understand why and what are the factors that go into why they're making this decision because I do agree with you that for some individuals when we think about perhaps unilaterally implementing DNR or sort of stating that we are not going to offer additional life-sustaining treatments that that can leave almost a negative taste in their mouth and in their perspectives and that experience not only impacts how those family members interact within the healthcare system going forward but it also impacts perhaps how their other individuals within our family and generations to come interacts as well and so I think that by having this awareness that perhaps they're there they're there are these factors that are at play that that in and of itself can aid to communication and better understanding and that ultimately even as it was for the case for my uncle is that we may ultimately not get to that point where we can result in a good death but part of the humility even in that is recognizing that everyone has their own narrative and for some people that may be how they choose to sort of spend that time of their life can I wonder you talked a bit about the family being the unit of sort of decision making versus one individual and sometimes being brothers sisters and it just strikes me that in our medical system we really focus on a health care proxy which is points one maybe two people and it's the first time I've thought about this is being maybe culturally insensitive that we force this and I wonder if you have come across a different way or think about this in a different way when you're asking about decision-making if a patient's unable to make a decision yeah I think part of that is just sort of like asking are there other individuals that you know help you sort of think about these things I think it was interesting is I think over the course of this fellowship you know when we talk about cultural humility and just other cultures in general on you know we talk about how for again other cultures that are not perhaps you know in the United States that there are that family can be a unit when it comes to making health decisions and sometimes we don't necessarily even talk to the patient and we talk to you know other relatives but I think sometimes we forget that when we're sort of like thinking about again dealing with individuals even here within the US and again part of it is just being culturally humility and culturally sensitive and again having a mindset and a willingness to sort of join the patient and exploration trip to try to understand again what are the factors that goes into how they think about things I hope you'll accept semi personal question but could you look in when your family was insisting and you were trying to dissuade them could you talk about what what dynamics you saw there and then in retrospect how did the family feel about it and third how long did your uncle survive at the other hospital okay so when spring the last question first he survived over a span of a month and a half after the initial diagnosis and those one I was a resident at the time and I was doing a lot of back and forth from residency to going to Chicago to be with him and so a lot of the communication as well was in part medical translation over the phone even while I was still in North Carolina but ultimately what that experience was like for me is that you know many times I try to help my family understand the the role of palliative care and hospice care and the philosophy and to sort of try to think more about how altum Utley on you know this would be in my uncle's best interest and sort of like think in framing suffering as well but for many of my family members and I will also acknowledge that I did not have the sort of communication skills that I possess right now but I also think that for many of my relatives on as a result of their own personal experience mistrust was by far the biggest factor that played a role for why they were not interested and they constantly sort of said well we know at this hospital doesn't treat black patients very well and we know that you know I know so-and-so who had the same diagnosis and they did something differently and that impart was why they ultimately decided to transfer his care to a different facility and even then after hearing the same thing at that institution I think we'd also should recognize that african-americans in general are significantly underrepresented within the healthcare system and so it was still a predominantly Caucasian workforce even at this other hospital but it was very difficult to sort of overcome that aspect of of mistrust and race and I think that I actually haven't had an opportunity to reflect back on his experience a lot with them now I think that initially there was some regret that ultimately my uncle died with what many of our family member beyou died suffering at that time and perhaps that may that experience may impact the decisions that they make with future family members going forward but at the time I will say that mistrust was by far the biggest mediator that played a role there Kevin thanks so much for an incredibly thoughtful and well put-together talk have a lot of thoughts in my in my mind but a couple things I do want to point out is that cannot overstate the importance of the tuskegee experimentation it has come up so many times and my taking care of patients this idea of suffering at the end of life can be you know we are very good at paying careful attention to what we're hearing from patients and families and then adjusting what we're saying so that it it mirrors or supports their view point using religiosity etc and that's super important there's a way in which acknowledging the mistrust can be super can be very helpful you know I I know oftentimes in my african-american the black patients that I'm taking care of their families there's worried that that we're not going to take good care of you so acknowledging as very can be very powerful I also worry that the language of suffering that we also use can be hurtful to patients and I worry that as we get closer and closer to the end of life and as families you're not doing what we want them to do and we emphasize the suffering and the pain you forget he's getting all these sticks do you want to go through these procedures don't you can you stand here and see him suffering that that the outcomes sometimes can be burden on the family going forward and so it's a kind of a careful balance where you have to kind of see what's happening in front of you and be open mean we're so good in palliative care at doing that but the the key here is being open to these seeing these particular threads and then the one last thing is for diversity in the workplace you know I this is been true forever and I'm feeling that in a much deeper way recently for some reason and being able to see people who look like you and as a as a clinician to be able to kind of claim being a piece of that group and speak with us at authenticity and authority really matters and you know so for our fellowship the importance of recruiting and then in terms of mentoring young people of color in this field cannot say enough how important that is thank you for that thank you you're inspiring talk I just want to make sure I open it up if there any questions at dana-farber Thank You Kevin this was a great job I'm Gloria white Hammond I'm a physician and I'm also a pastor of a local congregation we've done some some work with regard to the advanced care planning and really promoting the notion of palliative medicine in the african-american especially christian community so your talk was excellent when I came in I said for Kevin to make sure he tells his family that his people were here we were here we had your back and so many of the comments that you made were just absolutely brilliant and and your questions really were we're so helpful and I think I mean I know you're right that there's this historic mistrust but what's also important is to recognize that it's not just once upon a time that this is a this is a contemporary phenomenon so you it's you know just the headlines it's reminds us that we are it's not once upon a time so we are and given that we're all operating in a microcosm I remind us it's it this is a place where sterility was important but it's not a sterile bubble in the context of all of the isms that we all confront so it's it's out there is in here and it's an ongoing work for us to to to opportu to work at it and I and I because I operate on its both both sides of the bed if you will in terms of a pastoral but also a medical I really understand the tension that people feel especially when we get to these these thorny places end of life and what we're going to do a vs. not and and and but one of the things that I've recognized is that this is this is not these kinds of conversations it's you can't you can't be they can't be routed along the urgent care track it really requires staying in the conversation and it's often hard for us as providers because we just just makes no sense to us but to stay in the conversation because like you're saying to some extent you're seeding into the next relationship and if we if we dig our heels in and say this is just crazy this don't make no kind of sense that we're using this stuff all these treatments then it forces the family to dig in because now we've got a we've got a proof to you that God is able so if we if we can get to the place of wonder wonder why perfectly rational people are operating in these ways stay in that place of wonder and that humility and we may not win this one but it was seeding into the next one and the next one in the next one and we're all getting stronger and better because of it thank you so much thank time thank you so much every farthing be part of it [Applause]

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