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Brown: When you or your loved ones are facing end-of-life decisions you probably want the utmost in sensitivity from all service providers concerned, which in many cases includes healthcare professionals. A nurse in Asheville not only affirms this desire, she says every individual is entitled to it. We'll talk about the importance of culturally appropriate end-of-life care to healthcare recipients and providers next on Black Issues Forum.
Voiceover: Funding for this program is made possible in part by UNC-TV members.
Brown: Hello and welcome to Black Issues Forum. I am Natalie Bullock Brown. About five years ago America's attention was captured by the PBS documentary, "On Our Own Terms: Moyers on Dying." Today, according to the State Department of Health and Human Services, there re over thirty locally-based end-of-life care coalitions in North Carolina. These groups exist to help Americans better manage end-of-life decisions. There are also individuals working towards this same goal. One individual is a woman who has spent over 26 years in nursing and has witnesses\d the now well-documented fact that all healthcare is not equitable. Today her mission is to help people, especially African-Americans, understand that culturally appropriate care during the end of life is not only important, it is a patient's right. She has already made a strong impression in the city of Asheville at Mission Hospital. And now she is carrying her message statewide. We will meet and talk with her along with the head of a local end-of-life care facility in just a moment. But first here's a little about the people she has reached and those whom she has touched with her teaching.
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Clark: Good. Have you talked to other people in your family about what you would want?
Brownlee: I talked to Miniche about it.
Clark: Okay, good. Mr. Brownlee, John Brownlee is in his late 70's. He has multiple chronic illnesses. He's one of those people that if you looked at his medical record, looked at him on paper you would be surprised that he is as live and vibrant as he is. And I also have Ms. Rowland, who is one of my younger patients. And she has recently had an experience with cancer herself. And the older adults whom I see in the 85 plus group, end-of-life issues and being able to talk about what you want and about what your wishes are becomes very important.
Rowland: They were very concerned about me and they stuck right by my side.
Clark: I realize that we're all under a lot of time constraints. But actively listening and conveying that you want to hear the answer to a question when you ask it, I think is imperative. I think that's true of any older adult but I think it's particularly true with folks who perhaps have not felt like what they had to say or who they were was important.
Brown: Active listening is just one of the lessons advanced nursing practitioner Kay Mantiply Clark has learned and applied at Mission Hospital's Elderly Clinic in Asheville. It's a part of administering culturally appropriate care, an issue shared by one of her colleagues in nursing, an issue shared by one of her colleagues in nursing, Sharon Kelly West.
West: Culturally appropriateness is the one area that goes beneath the surface of what we need to be held accountable for. We as healthcare practitioners have a tendency to be a checks and balances type organization where we can do our annual diversity training, we can do - we can talk about how we need to service certain cultures but are our policies and procedures actually reflecting that these policies and procedures are appropriate for that specific culture?
Brown: This is one of the questions Sharon challenges both colleagues and students in healthcare to consider as she lectures across the state.
West: The American Indians coined a phrase called historical trauma. Has anyone heard of this before? It's very important to know the history of the people that you're serving.
Peterson: Being a nursing major we learn a lot about culture and how to integrate it into our nursing care and I think today is a good opportunity to learn about African-American culture and how to make my nursing care culturally appropriate.
Brown: It's a question that grew from her own experience as a nurse case manager.
West: I was going through something in my life when I knew, as a nurse, I felt like there's something more. To me it felt like no matter who you are, what culture you represented, we were forced to fit in an Anglo Eurocentric box when it dealt with patient care. And I knew that that wasn't fitting but still I, like everyone else, followed suit and didn't make waves but it didn't feel right. And I had an opportunity to share it with my mentor, who is now deceased, Dr. Secundi. And she said, "You're describing something that's dealing with culture and we call that culturally appropriate care. With this push from her I was allowed to talk to the ethics committee here at the hospital and share my concerns and to share this program with them. And they just totally absorbed it.
Blackmon: Well, I think the things that Sharon is offering is the ability to hear stories. Specifically from Sharon's work, hear stories of African-Americans, so that people can hear those stories before they get in the room, so to speak. Cultural awareness is primary because the story comes out of a cultural context. Chaplains very often go in and visit patients who are early on in a diagnosis and the patient is just beginning to think about, "Well what does my life mean now that I have this diagnosis?" Now our job is not to go in and connect them with a Baptist faith tradition or a Christian faith tradition or a Jewish faith tradition. It's to go in and listen and listen carefully about their story, their faith, and help them find support and concern and care, the presence of God if that is what they believe in, as they now reframe their lives in terms of this known terminal illness.
Mance: We are getting to the point where we don't know what the next patient is going to look like, what country they may come from, what religion they may practice or what have you. And so we have to be prepared for all of it. And so the biggest thing is to recognize that people are different and that they may have different needs, especially in their hours of distress or discomfort, that make paying attention to their cultural needs more important. And while we may not know exactly what their cultural needs are, we need to be aware that there are some different cultural needs.
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Brown: I'd like to welcome to the program Sharon Kelly West, a nurse case manager in Oncology Services at Mission Hospitals in Asheville and also Dr. Richard Payne, Director of the Institute on Care at the End of Life at the Duke Divinity School. Welcome to both of you. And one of the things that I have - well, both of you have shared with me and I've also read, is that all healthcare is just not equitable, and particularly at the end of life, as we were seeing on the feature. It's just - I guess healthcare professionals are not quite at the point that they understand that culturally appropriate end-of-life care issues are something that have to be thought about. I just would like your opinion, your explanation on that. Dr. Payne, I'll start with you.
Payne: Yes. Well, there are differences in outcomes of treatment that are based not so much on the actual treatment but on how they are applied to different populations. And this cuts across all areas of medicine, from infant care to surgery rates to end-of-life care.
Brown: So let me just make sure I'm understanding you. What you are saying is that the way that someone is treated when they are being treated medically, with medicine, the way that someone communicates with them, interacts with them, that also has an impact on how well they will receive the treatment?
Payne: Yes. Medicine is not just a scientific discipline. It's grounded in our sociology and our culture. The unfortunate fact of the matter is that we know not everyone is always treated equally by the healthcare system and that there are differences in outcomes that are based on race and gender and socio-economic differences.
Brown: What about these differences, Ms. West?
West: I think that Dr. Payne, what he says, is very true. But also the Institute of Medicine documented that very well in the release of "Unequal Treatment" when they said that no matter your income, no matter who you are, that based on racial - I don't want to say profile - but based on the minority status that you are treated differently. And also they said that disparity exists in African-Americans and most minorities from birth until death. And so these are very real facts.
Brown: Dr. Payne, is it that doctors and nurses in general are just insensitive and really could care less or is it that they are not aware of how they are treating people?
Payne: No, I think it's very complicated. I think it's - I think there is some insensitivity based on the time pressures that we have in terms of seeing patients. But I think the key thing is that people are just not aware of the fact that some of the decisions that they are making can be influenced by their own biases and stereotyping about the patients whom they are seeing. And we know that from the Institute of Medicine study that we when you're in a situation where it's complicated and where there's lots of time pressure to make a decision, that those are the very kind of circumstances that actually reinforce stereotyping and sort of what are called cognitive shortcuts for people to be able to make decisions. And that's bad.
Brown: Can you give an example?
Payne: Well sure. Like if you, for example, there was a study done in which patients were actors, black and white actors, with heath disease. When went to doctors and they were given identical scripts about the symptoms of heart disease that they had. And it turned out that although they were talking about the same symptoms, that they got different treatment recommendations from their doctors based on whether they were a white man or a black woman or a black man. And so why does that happen? Because the doctors or nurse might say, "Well, I would do this but I don't think the patient will really comply with the medication the same way another patient would so I might not give the same dose or give the - or write the same prescription. It's that kind of subtlety. And we need to make people aware that these biases are occurring and then do self-corrective measures to change it.
Brown: Ms. West, in your efforts to try and bring this issue to a larger audience, I guess, how well has it been received? And were you surprised that the executives at Mission Hospitals were so receptive to what you wanted to do?
West: Absolutely! And it's been really an eye-opener for me in just the fact that nursing schools in the area are wanting this type of training for their students that are future RN's and LPN's and of course CNA's. But the administration at Mission has been very, very supportive. The staff has wanted to know, "What can we do? Are we doing what we're supposed to be doing to make people feel welcomed?" And there's a history, as you well know and Dr. Payne, of mistrust. And there are issues that still have not been resolved. But those people that we have a tendency to see the most in end-of-life care are those people who are elderly. And of course these people remember the times when were not welcome in the very institutions that we are saying, "Come on board." They don't know if these practices have been eliminated. But they are still very distrustful. So there's a lot to do in cultural appropriateness training, which means we go beneath the surfaces, as was stated earlier. We look at public policy, we look at institutional roles and then we look at those people who are in those roles, the behaviors of those people, to see if they are willing to change and willing to make accommodations for various cultures we serve.
Brown: Right. So Dr. Payne, tell us about APPEAL. What does it stand for an how does it apply?
Payne: APPEAL is an acronym. It stands for A Progressive Palliative Care Educational Curriculum for African-Americans at Life's End. We had the opportunity to develop APPEAL because the other more standard curricular were not always addressing issues that were relevant to clinicians: doctors, nurses, social workers, chaplains, who were dealing with African-American patients at life's end. So the standard curriculums didn't talk much about the role of the faith community and dealing with the inherent spirituality of people as a way to increase their ability to cope with chronic serious illness. We do that in APPEAL. We have a module in APPEAL that talks about the need for culturally appropriate communication, to sit at the same level, literally sit at the same level with a person as you are discussing these very sensitive issues around, "Do we need to continue with aggressive treatment or do we need to withdraw some treatments because of the nature of your medical condition?" These are things that are very sensitive, require a lot of not just talking but listening. And there are way to do that and to teach doctors and nurses how to do that. And that's what the APPEAL curriculum does, in part.
Brown: Ms. West, with your program, how do you partner with Dr. Payne? And what are some of the, I guess, ways that your programs complement each other?
West: I think that it teaching the same thing. Of course my mentor up there was Dr. Marion Gray Secundi, who was also a mentor with Dr. Payne. And she taught me many, many things. She was a bio-ethicist at Tuskegee and then later Howard University. But basically it's quality care. And cultural appropriateness, to be real honest, is not an additional step at all; it's a part of quality that we as healthcare professionals should provide to our patients. And so we do complement each other because it's about serving everyone equally and to meet the needs of that individual.
Brown: Right. Well let's talk about some of the assumptions that are made potentially when a healthcare professional is confronted with a minority, an African-American patient in particular. What sort of things may come into mind, consciously or not, that would affect how well they treat that patient?
Payne: Well, because of this legacy of medical racism and the affirmative denial of care for many African-Americans, some African-American families will actually say that they want a lot treatment even when it may seem that that treatment might not be the best thing for their - at this time in their illness. Well, people will then make an assumption that all black folks will think that way. So it's again this idea around stereotyping is to over-generalize about what people really want and need. And one of the things that we've really learned is that you really have to individualize this care; you've got to get to know a person human-to-human, doctor-to-patient, and then make treatment recommendations that are in the best interest of that individual. So you can't generalize and stereotype.
Brown: Let me go back to something that you said and then I have a question for you in particular, Ms. West. But when you say that some patients respond to whatever their condition may be, by asking for more medicine, more treatment than they may need. Is that in response to - is that in response to, are you saying that's in response to the history of the denial of care, that it's basically sort of over compensating?
Payne: Right, in part. And it's also the language that healthcare providers sometimes use. For example it's very common to hear a doctor or a nurse say, "There's nothing more that we can do, so you've got to go to hospice. When the reality is there's a lot more that can be done. It may not be that you can cure the disease but you can continue care. So that's an example of how we use language that sends the wrong message when we should be saying, "We always care. We may not be able to cure but we can always care. So that sends a message, "Well, you can continue to care and to do treatment; you just can't cure the disease." And that's an example of the kind of culturally appropriate communication and the communication barriers that come up.
Brown: It seems like it's total reprogramming of nurses and doctors in the way that they think about what they say, because I'm sure that there's a sort of a terminology, there's a protocol that is standard in the healthcare profession. So how hard is it, how realistic it to think that nurses and doctors in the short term will be able to actually take this sort of new terminology on?
West: Well hopefully with the education process and the consistency in providing access to educational culturally appropriateness training, that we can continue to allow people to have that opportunity. And also I think it should be a mandate in the hospitals. If we do annual diversity trainings why not have annual cultural appropriateness training to make sure that people are aware and sensitized to the fact that we need to make sure that we are meeting the needs of the people that we serve. Also a part of the cultural appropriateness training is look, listen and feel. And as healthcare professionals we've learned that so much in basic life support. And I thought it was very appropriate to use that in this training. We looked at the individual and we've listened to the individual and we've become empathetic to see who is this person we are serving? What were their roles? Not assume and not stereotype, which is so easy to do. You cannot live in the South and not have stereotypes. I mean that's just a fact. But we as healthcare professionals need to leave our stereotypes at the door and we need to take on what is appropriate for our patients. It's not about us, it's about the patient that we serve.
Payne: And I'm very hopeful actually because in our experience with the APPEAL curriculum in teaching medical students and nursing students and young doctors and nurses, that people, before these habits become entrenched, the bad habits become entrenched, I think people do get it. People go into these professions really with a sincere intent to help people. And so we just have to teach them the right thing to do.
Brown: And in general do you think that this sort of appeal, to try and get doctors and nurses to think differently about how they interact with their patients, is something that's really only going to be most effective with the new crop or the new generation coming in? Or is it something that actually can be adapted by current professionals, especially those who have been in the profession for years? Ms. West?
West: I think - well one example I can give is I had to do a presentation before the board of directors at Mission Hospitals about just a segment of this. And one of the neurosurgeons who has been there for awhile in our town, an older gentleman, and he said at the end, "What can I do to make sure that my office is providing culturally appropriate care?" And to me that was a definite sign that things can change and that we'll keep persevering until it does completely.
Payne: I think you can teach an old dog new tricks. But I think it's like everything else, getting at the students early is very important. But we also have a multi-tiered strategy where we want to do, through continuing education, to teach practicing physicians and nurses new skills to improve their confidence and competency in these end-of-life matters and in culturally appropriate communication.
Brown: Ms. West, I want to go back to something that you said in the feature. You used a couple of terms. One of them was social isolation and the other one was historical trauma. Can you quickly, well briefly, tell us a little bit about what those things mean because they seem to be clues into how patients are going think about themselves but also how doctors and other healthcare professionals should think about their patients.
West: Well, historical trauma is coined from the American Indian. And basically it has to do with the Trail of Tears when these people were removed unfairly from their land. And that's a whole other segment. But I think that the definition of historical trauma is very apparent and it's very appropriate when we talk about this because it is a traumatic response to a cataclysmic. And I think that when we look at the history of slavery and on up to the segregation, Jim Crow and all these things that separated and qualified people as lesser than, these thoughts still remain in the minds of many people today. And even though, for example, I wasn't a part of the entire segregation era, I remember parts of it. But I remember what was passed on from the generation about the unfairness among the African-Americans, black Americans, and how some of it still remains. And the elders that come to the hospital that I see that are my patients constantly tell me, "I don't feel welcomed." So then we know that there is some of that trauma that still exists, that's been passed on from generation to generation. And it will cause a social isolation, you know? Because if people go to a place they don't feel welcome, they're not going to go to the hospital until the later stages, which is what we have a tendency to see with African-Americans.
Brown: Right. Well, Dr. Payne, we have close to 30 seconds left. So I wanted to give you the final word. What is the one important kernel of information that we need to have here?
Payne: Well, you know, end-of-life care and dying, death and dying, are part of a cycle of living. And we know that - we've talked a lot about differences between blacks and whites. But everybody has a basic human need to, when they're facing the end of a life, to die in community with their family, surrounded by loved ones, to have their death free of physical symptoms and to have their care in accordance with their own individual preferences. And in order to do that you have to really understand their cultural context and the background from which your patients are coming from.
Brown: Well, I want to thank both of you for being here and for such an informative discussion. I really appreciate it. And if you'd to obtain a copy or transcript of this show or get in touch with our guests, visit us online at www.unctv.org/bif.. And when you visit be sure to give us your comments and program suggestions. You can also call us on the BIF line at 919-549-7167. Be sure to join us next time for more stimulating discussion. And for Black Issues Forum, I'm Natalie Bullock Brown reminding you to be encouraged no matter what. Have a good one!
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