Journal of Social Work in End-of-Life & Palliative Care, 10:338–355, 2014 Copyright # Taylor & Francis Group, LLC ISSN: 1552-4256 print=1552-4264 online DOI: 10.1080/15524256.2014.975317
PEER-REVIEWED ARTICLES Values Important to Terminally Ill African American Older Adults in Receiving Hospice Care HYUNJIN NOH The University of Alabama School of Social Work, Tuscaloosa, Alabama, USA
While racial disparity in the use of hospice care by older African Americans is widely acknowledged, little is known about the values that they consider as important in receiving health care services along with direct experiences with having these values respected by hospice care providers. Using individual, face-to-face interviews, data were collected directly from 28 African American hospice patients about their experiences in hospice care. Content analysis was used to identify and categorize themes from multiple readings of the qualitative data. Resulting themes included: dying at home, open communications, independent decision-making, autonomy in daily life, unwillingness to be a burden, and relationships. Through the initial assessment, value preferences can be explored and then shared with hospice team members to ensure that services are provided in such a way that their values and preferences are respected. KEYWORDS African American, elderly, hospice, preference, qualitative, value
INTRODUCTION Racial disparity in the use of hospice care has been widely reported (Cohen, 2008; Colon & Lyke, 2003; Greiner, Perera, & Ahluwalia, 2003; Lackan et al., 2004; Lepore, Miller, & Gozalo, 2011). Prior research raised the question regarding whether low participation of African Americans in hospice care was due to structural barriers preventing access to hospice care or preferences affecting Received 16 April 2014; accepted 6 September 2014. Address correspondence to Hyunjin Noh, PhD, Assistant Professor, The University of Alabama School of Social Work, Box 870314, Tuscaloosa, AL 35487-0314, USA. E-mail: [email protected] 338
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use of hospice care. If African American individuals want to access hospice care but face barriers in doing so, then it becomes important to understand and address these barriers. The choice not to use hospice care despite having access to the service may still be driven by overall disparities in health care if their cultural values or preferences cannot be accommodated by service providers. Researchers explored structural barriers experienced by many African Americans accessing hospice care, as well as their preferences that may serve as barriers to their use of the services. Access barriers include lack of health insurance and limited income (Reese, Melton, & Ciaravino, 2004; Welch, Teno, & Mor, 2005), lack of knowledge of hospice care (Born, Greiner, Sylvia, Butler, & Ahluwalia, 2004; Jackson, Schim, Seeley, Grunow, & Baker, 2000; Jenkins, Zapka, Kurent, & Lapelle, 2005; Yancu, Farmer, & Leahman, 2010), low referral rates by physicians (Colon & Lyke, 2003; Reese et al., 2004; Winston, Leshner, Kramer, & Allen, 2004), and other logistical barriers (Damron-Rodriguez, Wallace, & Kington, 1994; Reese et al., 2004; Winston et al., 2004). Furthermore, some African Americans’ end-of-life care preferences may not be in line with hospice philosophy, when they desire for life-sustaining or curative treatments (Crawley, 2000; Gerst & Burr, 2008; Gessert, Curry, & Robinson, 2001; Winston et al., 2004). Such preferences may prevent them from using hospice care even when they have access to the service. Prior research also pointed out that some African Americans’ preference regarding how they receive hospice care may pose a barrier to their use of the service if, for example, there is lack of African American hospice staff when African American patients want to receive care from providers they can identify with (Burrs, 1995; Reese, Ahern, Nair, O’Faire, & Warren, 1999). Findings from these studies add to an understanding of older African Americans’ preferences that prevent them from receiving hospice care even when they have access to it. However, scant information is available regarding values that are important to terminally ill African American older adults when receiving health care services and their experiences with having their values respected by their hospice staff. This study addressed this gap through in-depth, qualitative interviews with older African American hospice patients. The goal was to identify the unique values and preferences of these individuals and facilitate the ability of hospice care professionals to honor these at end of life.
METHODS Sample A purposive sample of 28 participants was recruited from three hospice agencies in urban areas of Georgia. The Georgia Hospice & Palliative Care Organization provided a list of its board members and their agency affiliations. Eight agencies listed that were within a 2-hour driving distance
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from Atlanta, GA were contacted and asked to participate in the study. Five of the eight hospice agencies contacted agreed to participate. Three of the five agencies made participant referrals for interview, while the other two agencies did not have patients who met the eligibility criteria during the data collection period from August 2011 to January 2012. One of the three agencies was nonprofit and the other two for-profit. All three agencies were Medicarecertified, freestanding hospice agencies. One agency had 48% African American staff. The other two agencies reported having a very diverse staff including many African American staff members; however, they did not provide the number or percentage due to their lacking such information. The eligibility criteria were: (a) currently receiving hospice care; (b) 50 years of age or older; (c) African American; and (d) deemed by their nurse, social worker, or chaplain as mentally competent to participate. The data was collected directly from terminally ill hospice patients, rather than from medical chart or a proxy, so that it would represent their experiences as accurately as possible.
Data Collection Health care professionals (nurses, social workers, chaplains, physicians) of each hospice agency recruited patients who met the eligibility criteria through a letter of introduction and reading it to them when needed. The letter of introduction contained researcher information (name, affiliation, and contact information), and an explanation of the purpose of the study, eligibility criteria, interview procedures, and confidentiality. After patients gave verbal consent to release their name and contact information to the investigator, the health care professionals provided the interviewers with the information. An African American student majoring in gerontology and the investigator of this study, who is a Korean native, served as interviewers. Either the investigator or the student interviewer contacted the patients to answer questions about the study and to confirm their willingness to participate. Of the 34 individuals referred and contacted, 29 individuals agreed to the interview. All of the 29 individuals resided in the urban areas in Georgia. One individual’s condition deteriorated too quickly to participate in an interview; therefore, only 28 face-to-face interviews were conducted and completed. One-half of the 28 interviews were conducted by the African American student interviewer and the others by the investigator. Each interview was completed in a single session and conducted in a private place such as the participant’s home, his=her room on a hospice in-patient unit or room in a nursing home or an assisted living facility. Each participant signed a consent form before starting the interview. The participants were asked open-ended questions about values they believed were important in receiving health care services and experiences in having these values respected by hospice care workers (‘‘Would you please talk about any important values you have that are related to receiving
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health care services?’’ and ‘‘What are your experiences in having these values respected by the hospice care workers who provide your care?’’). For each of these values the participant provided in answering the first question, the interviewer probed by asking, ‘‘Could you please talk more about. . . . ?’’ and ‘‘Could you please tell me why (the value provided by the participant) is important to you in receiving health care services?’’ The interviewer also probed the participant’s answers to the second question by asking, ‘‘In what ways do your hospice care workers respect (or not respect) your values?’’ In addition to questions about their values, the participants were asked about their decisions to receive hospice care (‘‘Would you please talk about why you chose to receive hospice care?’’ and ‘‘Would you please talk about any factors you had to consider in making your choice to receive hospice care?’’). Analysis of responses to these questions were reported in elsewhere (Noh & Schroepfer, 2014). In order to gather the background information, the participant was asked about his or her gender, age, education, marital status, and religion. Information about the participant’s primary diagnosis was collected from the hospice staff. All of the interviews were audio-recorded and transcribed verbatim. The study was approved by the Institutional Review Boards (IRBs) of both the participating hospice agencies and the University of Wisconsin-Madison.
Data Analysis For the qualitative data, conventional content analysis (Hsieh & Shannon, 2005) was used to identify themes and patterns that arose from multiple readings of the transcripts. Under this inductive approach, researchers immerse themselves in the data to allow themes to emerge (Hsieh & Shannon, 2005), rather than using a predetermined coding scheme. The primary investigator and two researchers, both familiar with the topic and qualitative data analysis, repeatedly read and categorized responses. After separately analyzing=identifying themes of the data, the three ‘‘analysts’’ met to compare the thematic categories that evolved from each of their analysis. There was initial agreement on 80% of the categories and, after discussions, reached full consensus. The text was then separately coded using the agreed upon thematic categories. The analysts met again to compare the coded text under each thematic category. Agreement at that point was 90% and after discussion, full agreement was reached.
RESULTS Participants’ Characteristics Half of the participants (n ¼ 14) were female and half (n ¼ 14) male. Participants’ mean age was 69, and the majority (n ¼ 22, 78.6%) were neither married nor living with a partner. A little less than two-thirds of the participants self-identified as Baptist (n ¼ 18, 64%), while a little less than
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one-third as other Protestant (n ¼ 8, 29%), one as Muslim, and one as having no religious affiliation. The mean years of education was 10; a range of no formal education to a participant who had two master’s degrees (>20 years of education). Participants’ primary diagnoses were cancer (n ¼ 8, 28.6%), heart disease (n ¼ 8, 28.6%), pulmonary disease (n ¼ 5, 17.9%), debility unspecified (n ¼ 4, 14.2%), and other (n ¼ 3, 10.7%).
Identified Themes Regarding Values The content analysis revealed that six themes represented the views of these older African Americans. The themes were: dying at home, independent decision-making, autonomy in daily life, burden on family, open communication, and relationships. Each theme and subtheme is discussed in the following sections. DYING AT HOME When asked about values important to them, 19 (79%) of the 28 participants talked about the value of dying at home. They expressed a preference to die at home, and all 19 of them felt that their hospice care workers respected this preference. A 94-year-old female participant stated, ‘‘I wanted to be home and I am going to die at home.’’ When asked to talk about whether her wish was respected by the hospice providers, she answered as follows: Oh, yes, they (hospice care providers) are fine with it. They don’t tell me [that I] should stay somewhere else [such as nursing home]. I bet they all knew this is where I want to be and gonna die here.
Correspondingly, a 51-year-old male participant mentioned that hospice care worked well for him because he did not want to leave home and could have hospice care providers come to his house to provide care. He added that the hospice care providers supported such preference and had ‘‘no problem in that area.’’ INDEPENDENT DECISION-MAKING Another theme was independent decision-making. Seven (25%) of the 28 participants expressed that they placed a high value on making decisions based on their own judgment. All expressed satisfaction with the hospice care providers for honoring this value. For example, a 50-year-old male participant described his decision-making process as follows: I decide what’s best for me. I ask for facts and think them over and make my own decision. When to have them (hospice care providers) come in and what to take or what not. [I] need those pills and oxygen but not the hospital bed. It’s all upon my decision.
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This participant had a good experience with respect shown in this remark: ‘‘They (hospice care providers) are really great about it. [They] always says, ‘Take your time and it’s (the decision) up to you.’ They never push.’’ Similarly, a 61-year-old female participant illustrated the value of independent decision-making: ‘‘I can feel when a person is forcing things on me, and when they force things on me, it makes me angry . . . . I decide what I want and what I need . . . . I’ve always been this way.’’ This participant also expressed satisfaction with the hospice care providers being respectful of her preference by saying, ‘‘They (hospice care providers) don’t try to force anything. Any of it. They let me decide. I feel good about it.’’ Correspondingly, a 55-year-old female participant shared a similar experience by stating as follows: Say, if I have a problem, and they’ll (hospice care providers) say, ‘‘Well, it’s up to you, Ms. [participant’s last name], what you want to do.’’ And I tell them, ‘‘Let me think about it,’’ and then I tell them what I want to do. And, then they would do their best to try to help me to get it done.
To these participants, making their own decision was an important value that they felt was respected by the hospice care providers. AUTONOMY IN DAILY LIFE Even when terminally ill and experiencing physical limitations, exercising autonomy in their everyday lives was reported as important by 12 (43%) of the 28 participants. For example, a 50-year-old male participant discussed his wish for autonomy in his daily activities as follows: They asked if I needed them to come by and bathe me and shave me and stuff. I told them I don’t need that and I can do that myself. And I just need the nurse to come out, and they just send the nurse and my social worker. I mean I don’t want to waste nobody’s time. If I can do it myself, that’s my job to do it. Somebody else come out here and do it for me when I can still do it—I don’t think it [is] right.
This participant showed satisfaction with hospice care providers’ respect by saying, ‘‘They (hospice care providers) respect what I want. They are great about it.’’ Another participant, a 90-year-old female, placed a strong emphasis on her autonomy by saying, ‘‘To tell you the truth, I’ve always been independent. I always could take care of myself. I’m doing pretty good here (home) by myself. I usually do my own house.’’ This emphasis on autonomy in daily life was also found in a 52-year-old male participant’s statement: I’m sick, sure enough, but I’m not helpless. I can walk up that street, but once I get up to that little hill right up there, I have to stop and rest for a
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little while. But, I can still walk and when I go to the store, I walk a little bit further or I can drive that green car over there.
A subtheme arose from the discussion of autonomy in daily life. In talking about the importance of autonomy in their daily lives, nine (75%) of the 12 participants put an emphasis on maintaining their mobility. Though these participants were physically limited due to their declining health, they were either making efforts to improve their mobility or wishing to recover their previous state so that they could keep their autonomy in daily life. One example was found in a 73-year-old male participant’s comment: I keep telling myself, if you don’t want to lose it, you better use it. And I’m referring to my body. Because eventually if we don’t use what God gives us, he will give it to somebody else. He will give it to somebody that will use it.
An 82-year-old female participant shared a similar attitude in her comment: I appreciate their (hospice care providers) worries about me being by myself here, but, I tell you what, I can hold on to the stove and can carry my stuff on wheels. I try to keep myself up and keep going.
While six (67%) of the nine participants answered that their hospice care providers respected that they wanted to keep mobile, the other three participants (33%) spoke about how their wish for mobility was not respected by the hospice. For example, a 73-year-old male participant talked about his wish as follows: There’s room for improvement if they had a program of exercise that they could pass on to the hospice patients—especially those that request it. I know a bunch of folks would be just as glad to forget about it, but there are others of us that—excuse me—that would enjoy doing something besides walking around that church.
Correspondingly, another participant, a 77-year-old male, strongly expressed his wish for increased mobility in his statement: It looks to me, hospice is something that they put you in your house—in your house [to] just sit down and look at the walls and die. They [are] not making my life better. I know there are people that I know, they go to the YMCA. They go to different places. They have a center that they have transportation come and takes you there for activities to get you move.
BURDEN ON FAMILY Unwillingness to be a burden to their loved ones was discussed by eight (29%) of the 28 participants, who all noted that their hospice care providers
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understood and respected this value. For example, a 50-year-old female participant talked about the care her brother provided prior to her admission to hospice care: I became a burden to him. They had to look out for me. The pain in my legs was so bad that I couldn’t sleep at night. They put me in the wheelchair and took me down to the ER. I really didn’t want to be a burden.
Similarly, a 54-year-old male participant was concerned about his wife who had multiple caregiving responsibilities: Even though now I still tell her, you know, ‘‘You just take it easy. Don’t worry about me. Take care of—just do your job and try not to worry about me.’’ But I know she can’t help from worrying, you know? Now that she’s got, we got two grandkids and she helps with them, too . . . she [has] been having to do mostly everything for me. And that took a lot out of her. That kinda bothered me.
A 76-year-old female felt that hospice care providers honored her value and provided the necessary support: ‘‘I’m asking for a volunteer because my granddaughter’s young but she stays in the house with me 24=7. It’s a hard job to do. They (hospice care providers) understood and said they’ll get somebody.’’ As much as these participants appreciated the support and care provided by their family, they did not want to be a burden to them, and all eight participants expressed that their hospice care providers respected the value. OPEN COMMUNICATION In discussing important values in receiving health care services, 12 (43%) of 28 participants noted that they wanted to have open communication with their health care providers and talked about their experience with the hospice care providers supporting their preferences for open communication. The 12 participants believed that full-disclosure of their health condition and information about the care they were receiving was important. In addition, they also thought it was important to express their concerns and ask questions of their health care providers. For example, a 50-year-old male participant talked about his preference for open communication with health care providers: I feel about anybody—I mean if you want to tell me something, tell it to me. If you [are] not gonna be honest with me and tell me lies, don’t even mention it. If you are gonna tell me something bad, tell me something bad. If you are gonna tell me something good, tell me something good. I want to know. And don’t beat around the bush.
He described his experience with hospice care providers’ respect by saying, ‘‘They (hospice care providers) don’t hold back nothing (anything) from me.
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They let me know what’s going on, and I appreciate it.’’ Truth-telling in communication with health care providers was also emphasized in a 64-year-old participant’s comment, ‘‘Be honest [with] what you see or what you may suspect. Give me the real deal, tell me the truth of it and let me deal with that. Don’t try to sugarcoat it. It is what it is.’’ In addition to the wishes for full-disclosure of their health condition from health care providers, participants talked about wanting to let their health care providers know how they feel. You’re the one who’s feeling the pains and the problems, so you have to let them know what you feel, because they can’t guess everything about you, so you have to let them know what’s what. And, I let them know if I’m feeling bad or something. (55-year-old female)
In addition to the full-disclosure of their health condition, participants wanted sufficient explanation about their condition and the health care services=treatments that they were receiving. They wanted to have health care providers who would take the time to explain their health conditions and the care provided and to make sure the patients understood the information conveyed. For instance, a 101-year-old female participant expressed her preference by stating, ‘‘I love a person going to sit down, take some time to explain things to me. Just don’t close it out to me and then leave me hanging and I’m trying to figure out what’s what.’’ A 54-year-old male participant spoke about the hospice care providers’ respect as follows: Anything that she (hospice nurse) thinks is wrong with me, she sits down and explains it to me, you know? A lot of nurses or even doctors don’t do that. They just, ‘‘I’m giving you a prescription for you to get this and get that because . . .,’’ but my nurse, she really sat down and explained it [to] me. She’s real nice.
While nine (75%) of the 12 participants felt their wish for open communication was respected by the hospice care providers, three (25%) participants reported a negative experience. For example, a 68-year-old male described his experience as follows: I felt rejected when I thought she [hospice nurse] might’ve been hiding something from me . . . . She may be hiding something to look out for me, but I still feel rejected. I wish she’d be just more open with me.
Similarly, a 51-year-old male said he was ‘‘not completely satisfied’’ with the depth of information his hospice nurse provided about the medical care he was receiving from her.
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RELATIONSHIPS Twenty (71%) of the 28 participants talked about the nature of the relationships they wanted to have with their loved ones and=or their health care providers. The content analysis of their comments resulted in three subthemes: receipt of social support, a caring and friendly attitude, and dependability. Social support. Eight (40%) of the 20 participants spoke about wanting to receive social support while they were going through a difficult time with their health. They wanted to have their family, friends, neighbors, or church members close by and without asking for them to be there. For example, a 52-year-old male participant pointed out that ‘‘still seeing his friends and relatives’’ was very important to him when he was sick. A 75-year-old female spoke about how she appreciated the visits from her pastor and her church members, and how these visits ‘‘kept [her] spirits up and were important [to her].’’ The importance of receiving social support was also mentioned by a 94-year-old female participant: ‘‘That’s (having visitors) keeping me alive. I may be sick and weak but I really enjoy seeing them and talking with them. It gives me good energy.’’ Having their loved ones when they were seriously ill provided valuable support to these participants, and all eight reported that their wish to receive social support was supported by their hospice care providers. This support was revealed through a 50-year-old female participant’s comment: ‘‘They (hospice care providers) are really nice. They let my family visit me here (hospice in-patient unit) and stay at night with me. My children are welcome here.’’ Caring and friendly attitude. In addition to the relationships with their family, friends, and church members, participants talked about relationships with their hospice care providers. Fifteen (75%) of the 20 participants emphasized that a ‘‘caring and friendly’’ attitude was important to them when it came to receiving health care services and all 15 participants reported that their respective hospice care providers demonstrated this attitude. For example, a 90-year-old female participant shared her experience of being treated badly by hospital staff prior to her admission to her hospice care agency. She was very appreciative of her hospice care providers’ friendly attitude. She emphasized the importance of being treated nicely by health care providers, saying, ‘‘When people treat you like you’re a human being that goes a long way with me.’’ This participant further described the treatment as follow: They pay attention to the little tiniest thing. I knew nothing about hospice, but I can tell you this, I have never been treated so well [as I am] in hospice. I love all of ‘em. I love ‘em to death.
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Similarly, a 68-year-old male participant discussed how he appreciated being treated with care and concern by health care providers and how hospice care providers supported his value: It’s (hospice care) like family, better than family, better than family. They are, what I like is, they are ‘‘concerned, concerned’’ about you, and they do their best to see about you. It’s what I [am] always looking for in doctors and nurses. They (hospice care providers) do their very best to see about you.
Dependability. One-half (N ¼ 10) of the 20 participants pointed out the importance of being able to depend on health care providers for competent and responsive services. A 90-year-old female participant, for example, described her hospice care providers’ dependability by saying, ‘‘They’re always there, no matter what. I had a little problem last week but they were right there for me. It’s a huge relief to know they’re there when I need them.’’ Similarly, a 54-year-old male participant expressed his appreciation for the hospice care providers’ dependability by saying: You know they (hospice care providers) always come the day they said they gonna come and call when they gonna be late. Just in case my wife or somebody is here, they don’t have to wait on them coming. They call and let you know what time they are coming. That means a lot when you receive care from somebody.
Eight (80%) of the 10 participants noted that their hospice providers did a great job supporting their wish for dependability; however, two of the participants (20%) shared negative experiences with the hospice providers’ dependability. One 51-year-old male wished that the hospice providers would be more responsive to his telephone calls as follows: I wish they could improve with answering their phones at late hours. They’re supposed to be at desk all time, somebody to pick up the phone all time, but, sometimes it’s hard to get them on the phone. I don’t want to be in no (any) emergency if I can’t get nobody (anybody) on the phone.
The other participant, a 64-year-old male, had to wait a couple of days for the hospice care providers to pay an initial visit after he was discharged from the hospital. He complained that, even after the initial visit by the hospice nurse, it took several more days for the hospice care providers to provide the medical care he needed. DIVERSITY AMONG HEALTH CARE PROVIDERS When discussing their values or preferences in receiving health care services, none of the 28 participants mentioned a preference for their hospice care
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providers’ race or ethnicity. In a follow-up question, participants were asked whether prior to enrolling in services they asked if the agency had Black providers. All 28 participants (100%) answered that they had not asked and the interviewer then followed up by asking why not. The content analysis of the reasons provided by all 28 participants resulted in four themes: (a) disinterest in hospice providers’ race=ethnicity, (b) no preference due to religious beliefs, (c) more importance on competency than on race=ethnicity, and (d) knowledge on the availability of Black providers. Disinterest in the hospice care providers’ race=ethnicity. Twenty (71%) out of 28 participants answered that the hospice care providers’ race= ethnicity did not matter to them. For example, an 89-year-old female participant expressed her lack of racial preference for the hospice care providers by saying, ‘‘I’m a human being and they’re human beings, so I didn’t think it was necessary for me to ask that question.’’ Another participant, a 68-year-old male, provided a similar response, ‘‘It doesn’t matter. People are people.’’ Correspondingly, a 92-year-old female participant said, ‘‘I didn’t think about asking that, but I feel one might not be any nicer than the other. You find some nice and White and some nice and Black. And just the opposite.’’ No preference due to religious beliefs. Three (11%) of 28 participants talked about the role their religious beliefs played in their response. They were not interested in the race=ethnicity of hospice care providers because God ‘‘made all colors and all kinds’’ (87-year-old female) and ‘‘sees about all of us’’ (82-year-old female). A 94-year-old female noted, ‘‘The color was not even a big interest to us. The color, race, or the local . . . as long as they were people who would enter the spirit of Christ.’’ More importance on competency than on race=ethnicity. Four (14%) of the 28 participants placed more focus on the hospice care providers’ competency than on their race=ethnicity. For example, a 54-year-old male participant answered, ‘‘I have no feeling about that (hospice care providers’ race=ethnicity), you know, as long as they’re ‘capable.’’’ This attitude was also found in a 68-year-old male participant’s remark: ‘‘I didn’t think it mattered as long [as] you knew you’re getting good care from someone who knows what they’re doing. If we [are] Black or White or what, it don’t made no difference.’’ Knowledge on the availability of black hospice care providers. Three (11%) of the 28 participants answered that they knew or assumed that the agency would. One participant, a 75-year old female, was already aware of the availability of Black care providers through her previous experience with the agency when her late husband received care from that agency. Another
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participant, a 54-year old male, assumed that the agency would have Black care providers because he had seen many Black staff at other health care agencies in the area.
DISCUSSION Participants discussed the values they considered important in receiving care from their hospice care providers. These included: dying at home; independent decision-making; autonomy in daily life; unwillingness to be a burden; open communication; and supportive, caring, and dependable relationships. Three of these six values—independent decision-making, autonomy in daily life, and unwillingness to be a burden—centered around the sense of independence. The participants clearly sought to remain as independent as possible by making their own decisions, performing everyday activities on their own for as long as they were able, and not placing a burden on loved ones. Such findings are consistent with seriously ill older adults’ values reported in the previous studies with mostly White samples (Schroepfer, Noh, & Kavanaugh, 2009; Steinhauser et al., 2000). Therefore, these findings suggest that there is a similarity across racial groups regarding values important to older adults with serious illness. Another value that participants discussed was the role of open communication with health care providers. These participants wanted full disclosure of their health condition and sufficient information regarding their health care options from their health care providers. Considering wishes to make their own decisions based upon information provided to them, it is easy to understand that open communication was of critical importance to participants. This finding is similar to previous research findings about the importance of open communication in seriously ill patients across all racial groups (Steinhauser et al., 2001; Steinhauser et al., 2000). However, it contrasts with the findings from previous literature about minority families who keep terminal diagnosis=prognosis from the patient, as a way to protect the patient from emotional distress (Noggle, 1995; Winston et al., 2004). The contradictory findings may suggest that nondisclosure may not accurately meet the cultural and communication preferences of many African Americans. It should be also noted that there might have been a shift in African Americans’ attitude toward full-disclosure since previous findings on end-oflife communication were reported. Participants also placed an emphasis on supportive, caring, and dependable relationships with their family, friends, as well as health care providers. This finding adds to the previous findings about the importance of quality social support and relationships among seriously ill individuals (Kelly et al., 2003; O’Mahony et al., 2005; Schroepfer, 2008). The participants in this study appreciated visits and calls from family, friends, and church
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members, and wanted them to be nearby as a source of emotional support. As for the relationship with their health care providers, participants wanted someone with a caring and friendly attitude upon whom they could depend to be competent and punctual in providing care. The participants reported that these attributes were more important than the race=ethnicity of their hospice providers. This finding is in sharp contrast to previous research on minority patients’ cultural preferences in receiving health care services that found that African Americans wanted to have a health care provider who shared with them a common racial and cultural background (Burrs, 1995; Reese et al., 1999; Cort, 2004). It should be noted, though, that all three hospice agencies had many African American hospice care providers and some participants recalled African American care providers visiting them during the admission process. Furthermore, the urban areas of Georgia, where most of the participants resided, traditionally have a large number of African American populations. Due to this community racial composition, participants may have expected to have at least one African American hospice care provider. As one participant stated, ‘‘Well, considering the fact it’s (the race= ethnicity of hospice care providers) not really important for one. For two, this is Atlanta, so we’re (African Americans) everywhere, you know.’’ It also needs to be considered that African Americans’ preference for racial=ethnic background of health care providers might have changed since previous studies were conducted. Overall, participants felt that their values were respected by their hospice providers; however, a few participants discussed some areas where they felt improvement could be made—including a need for sufficient information, hospice programs to improve mobility, and dependable hospice care providers. Likewise, participants had a list of values that they wanted to have respected by their hospice providers and that could have affected their use of hospice care if not respected. The findings for the older African American hospice patients in this study are similar to previous research findings about seriously ill older adults’ values in mostly White samples and, therefore, may not be unique to the African Americans. The findings of this study, however, are based on a small sample not intended to be generalized. Future research with larger samples is needed to extend our knowledge about older African American hospice patients’ values.
STUDY LIMITATIONS This study addressed gaps in prior research by: (a) focusing on values held by African American older adults who are receiving hospice care, while previous studies mainly explored values of those who chose not to receive it; and (b) collecting information directly from hospice patients rather than from chart or proxy. However, three primary limitations of the study’s results exist. Due to the nature of the purposive sampling method, only the views of those
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who voluntarily participated were captured. These participants may have had values and experiences in receiving hospice care that were different from those who decided not to participate in the study. This study recruited participants with intact cognitive ability and, therefore, the findings of this study do not reflect the values and experiences of patients with cognitive issues. Proxies of such patients should be interviewed in future research to explore the values proxies consider important in choosing hospice care for their loved ones and their experiences in having the values respected by hospice care providers. Also, participants in this study may not have been completely open about their values or preferences in receiving health care services and their experiences with hospice care providers. Before each interview, the interviewer explained participant their rights and made sure that they understood that the interview and his or her identity would be kept confidential. However, participants may have still felt uncomfortable discussing openly their values and experiences for fear of offending their hospice care providers and having the health care they receive compromised. It should be noted that the participants in this study were interviewed by either an African American or a Korean native interviewer. The participants’ responses did not seem to differ by the interviewer’s race in this study. Nevertheless, the potential impact of an interviewer’s race=ethnicity should be considered as a factor in the design of future studies about similar topics with older African Americans because of racial discrimination in various care services.
Future Research The findings of this study provide implications for future research. The findings suggest that future research explore terminally ill African American older adults’ preferences for a full disclosure of their health condition with a bigger sample size from a longitudinal perspective. The findings of this study are based upon a small number of participants at one time point in their terminal illness trajectory. A longitudinal study, with a larger sample, could provide more insight into what preference they have regarding a full-disclosure and how their preferences might change over time. Future research should also consider making comparisons between terminally ill African American older adults who opted for hospice care and who did not. Knowledge from such comparison will enhance our understanding of values important to terminally ill African American older adults and of any differences in values between hospice and nonhospice users among African Americans.
Social Work Practice Implications Hospice social workers can assess patients’ preference for the level of independence and autonomy they want to try to maintain in their daily activities.
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The hospice team members then can be made aware of the result of the assessment and support the patient’s wishes. Patients will likely feel more comfortable in allowing hospice care workers into their lives knowing that they still can maintain a sense of autonomy and control over their lives. As independence was found important to older White patients as well (Schroepfer et al., 2009; Steinhauser et al., 2000), assessment of this value by social workers can be useful for seriously ill older adults in both racial groups. Hospice social workers can also assess patients’ preference for the level of open communication about medical condition and treatment and share their assessment with team members. This assessment can be used to help hospice care providers adjust the amount and depth of information given to patients. This assessment should be ongoing because patients’ preferences may change as their illness progresses.
CONCLUSION The current study explored values important to older African American hospice patients. Participants expressed the need to have independence, social support, and open communication respected by their hospice care providers. It is imperative that hospice providers explore and understand values and preferences of older African Americans to be able to incorporate them into service delivery. Providing service in a way that respects values could improve older African Americans’ experience with hospice care services. Examples of successful intervention and care can be promulgated within the African American community in an effort to increase use of hospice care among seriously ill older African Americans.
ACKNOWLEDGMENTS The findings of this study were presented as a poster at the 66th Annual Scientific Meeting of The Gerontological Society of America, November 19–24, 2013, New Orleans, LA and at the 18th Society for Social Work Research Conference, January 15–19, 2014, San Antonio, TX. The author would like to acknowledge Dr. Melinda Kavanaugh for her comments on an earlier version of the article.
FUNDING Support for this study was provided by University of Wisconsin-Madison Population Health Dissertation Grant sponsored by the Robert Wood Johnson Foundation Health & Society Scholars Program (grant no. 67959).
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Noh, H., & Schroepfer, T. A. (2014). Terminally ill African American elders’ access to and use of hospice care. American Journal of Hospice and Palliative Medicine. Advance online publication. doi:10.1177=1049909113518092 O’Mahony, S., Goulet, J., Kornblith, A., Abbatiello, G., Clarke, B., Kless-Siegel, S., . . . Payne, R. (2005). Desire for hastened death, cancer pain and depression: Report of a longitudinal observational dtudy. Journal of Pain and Symptom Management, 29(5), 446–457. Reese, D. J., Ahern, R. E., Nair, S., O’Faire, J. D., & Warren, C. (1999). Hospice access and use by African Americans: Addressing cultural and institutional barriers through participatory action research. Social Work, 44(6), 549–559. doi:10.1093=sw=44.6.549 Reese, D. J., Melton, E., & Ciaravino, K. (2004). Programmatic barriers to providing culturally competent end-of-life care. American Journal of Hospice & Palliative Care, 21(5), 357–364. Schroepfer, T. A. (2008). Social relationships and their role in the consideration to hasten death. The Gerontologist, 48(5), 612–621. doi:10.1093=geront=48.5.612 Schroepfer, T. A., Noh, H., & Kavanaugh, M. (2009). The myriad strategies for seeking control in the dying process. The Gerontologist, 49, 755–766. doi:10.1093= geront=gnp060 Steinhauser, K., Christakis, N., Clipp, E., McNeilly, M., Grambow, S., Parker, J., & Tulsky, J. (2001). Preparing for the end of life: Preferences of patients, families, physicians, and other care providers. Journal of Pain and Symptom Management, 22(3), 727–737. doi:http://dx.doi.org/10.1016/S0885-3924(01)00334-7 Steinhauser, K., Christakis, N., Clipp, E., McNeilly, M., McIntyre, L., & Tulsky, J. (2000). Factors considered important at the end of life by patients, family, physicians, and other care providers. Journal of the American Medical Association, 284(19), 2476–2482. Welch, L. C., Teno, J. M., & Mor, V. (2005). End-of-life care in Black and Whites: Race matters for medical care of dying patients and their families. Journal of the American Geriatrics Society, 53, 1145–1153. Winston, C. A., Leshner, P., Kramer, J., & Allen, G. (2004). Overcoming barriers to access and utilization of hospice and palliative care services in African-American communities. Omega: Journal of Death & Dying, 50(2), 151–163. Yancu, C. N., Farmer, D. F., & Leahman, D. (2010). Barriers to hospice use and palliative care services use by African American adults. American Journal of Hospice & Palliative Medicine, 27(4), 248–253. doi:10.1177=1049909109349942
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PEER-REVIEWED ARTICLES Values Important to Terminally Ill African American Older Adults in Receiving Hospice Care HYUNJIN NOH The University of Alabama School of Social Work, Tuscaloosa, Alabama, USA
While racial disparity in the use of hospice care by older African Americans is widely acknowledged, little is known about the values that they consider as important in receiving health care services along with direct experiences with having these values respected by hospice care providers. Using individual, face-to-face interviews, data were collected directly from 28 African American hospice patients about their experiences in hospice care. Content analysis was used to identify and categorize themes from multiple readings of the qualitative data. Resulting themes included: dying at home, open communications, independent decision-making, autonomy in daily life, unwillingness to be a burden, and relationships. Through the initial assessment, value preferences can be explored and then shared with hospice team members to ensure that services are provided in such a way that their values and preferences are respected. KEYWORDS African American, elderly, hospice, preference, qualitative, value
INTRODUCTION Racial disparity in the use of hospice care has been widely reported (Cohen, 2008; Colon & Lyke, 2003; Greiner, Perera, & Ahluwalia, 2003; Lackan et al., 2004; Lepore, Miller, & Gozalo, 2011). Prior research raised the question regarding whether low participation of African Americans in hospice care was due to structural barriers preventing access to hospice care or preferences affecting Received 16 April 2014; accepted 6 September 2014. Address correspondence to Hyunjin Noh, PhD, Assistant Professor, The University of Alabama School of Social Work, Box 870314, Tuscaloosa, AL 35487-0314, USA. E-mail: [email protected] 338
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use of hospice care. If African American individuals want to access hospice care but face barriers in doing so, then it becomes important to understand and address these barriers. The choice not to use hospice care despite having access to the service may still be driven by overall disparities in health care if their cultural values or preferences cannot be accommodated by service providers. Researchers explored structural barriers experienced by many African Americans accessing hospice care, as well as their preferences that may serve as barriers to their use of the services. Access barriers include lack of health insurance and limited income (Reese, Melton, & Ciaravino, 2004; Welch, Teno, & Mor, 2005), lack of knowledge of hospice care (Born, Greiner, Sylvia, Butler, & Ahluwalia, 2004; Jackson, Schim, Seeley, Grunow, & Baker, 2000; Jenkins, Zapka, Kurent, & Lapelle, 2005; Yancu, Farmer, & Leahman, 2010), low referral rates by physicians (Colon & Lyke, 2003; Reese et al., 2004; Winston, Leshner, Kramer, & Allen, 2004), and other logistical barriers (Damron-Rodriguez, Wallace, & Kington, 1994; Reese et al., 2004; Winston et al., 2004). Furthermore, some African Americans’ end-of-life care preferences may not be in line with hospice philosophy, when they desire for life-sustaining or curative treatments (Crawley, 2000; Gerst & Burr, 2008; Gessert, Curry, & Robinson, 2001; Winston et al., 2004). Such preferences may prevent them from using hospice care even when they have access to the service. Prior research also pointed out that some African Americans’ preference regarding how they receive hospice care may pose a barrier to their use of the service if, for example, there is lack of African American hospice staff when African American patients want to receive care from providers they can identify with (Burrs, 1995; Reese, Ahern, Nair, O’Faire, & Warren, 1999). Findings from these studies add to an understanding of older African Americans’ preferences that prevent them from receiving hospice care even when they have access to it. However, scant information is available regarding values that are important to terminally ill African American older adults when receiving health care services and their experiences with having their values respected by their hospice staff. This study addressed this gap through in-depth, qualitative interviews with older African American hospice patients. The goal was to identify the unique values and preferences of these individuals and facilitate the ability of hospice care professionals to honor these at end of life.
METHODS Sample A purposive sample of 28 participants was recruited from three hospice agencies in urban areas of Georgia. The Georgia Hospice & Palliative Care Organization provided a list of its board members and their agency affiliations. Eight agencies listed that were within a 2-hour driving distance
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from Atlanta, GA were contacted and asked to participate in the study. Five of the eight hospice agencies contacted agreed to participate. Three of the five agencies made participant referrals for interview, while the other two agencies did not have patients who met the eligibility criteria during the data collection period from August 2011 to January 2012. One of the three agencies was nonprofit and the other two for-profit. All three agencies were Medicarecertified, freestanding hospice agencies. One agency had 48% African American staff. The other two agencies reported having a very diverse staff including many African American staff members; however, they did not provide the number or percentage due to their lacking such information. The eligibility criteria were: (a) currently receiving hospice care; (b) 50 years of age or older; (c) African American; and (d) deemed by their nurse, social worker, or chaplain as mentally competent to participate. The data was collected directly from terminally ill hospice patients, rather than from medical chart or a proxy, so that it would represent their experiences as accurately as possible.
Data Collection Health care professionals (nurses, social workers, chaplains, physicians) of each hospice agency recruited patients who met the eligibility criteria through a letter of introduction and reading it to them when needed. The letter of introduction contained researcher information (name, affiliation, and contact information), and an explanation of the purpose of the study, eligibility criteria, interview procedures, and confidentiality. After patients gave verbal consent to release their name and contact information to the investigator, the health care professionals provided the interviewers with the information. An African American student majoring in gerontology and the investigator of this study, who is a Korean native, served as interviewers. Either the investigator or the student interviewer contacted the patients to answer questions about the study and to confirm their willingness to participate. Of the 34 individuals referred and contacted, 29 individuals agreed to the interview. All of the 29 individuals resided in the urban areas in Georgia. One individual’s condition deteriorated too quickly to participate in an interview; therefore, only 28 face-to-face interviews were conducted and completed. One-half of the 28 interviews were conducted by the African American student interviewer and the others by the investigator. Each interview was completed in a single session and conducted in a private place such as the participant’s home, his=her room on a hospice in-patient unit or room in a nursing home or an assisted living facility. Each participant signed a consent form before starting the interview. The participants were asked open-ended questions about values they believed were important in receiving health care services and experiences in having these values respected by hospice care workers (‘‘Would you please talk about any important values you have that are related to receiving
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health care services?’’ and ‘‘What are your experiences in having these values respected by the hospice care workers who provide your care?’’). For each of these values the participant provided in answering the first question, the interviewer probed by asking, ‘‘Could you please talk more about. . . . ?’’ and ‘‘Could you please tell me why (the value provided by the participant) is important to you in receiving health care services?’’ The interviewer also probed the participant’s answers to the second question by asking, ‘‘In what ways do your hospice care workers respect (or not respect) your values?’’ In addition to questions about their values, the participants were asked about their decisions to receive hospice care (‘‘Would you please talk about why you chose to receive hospice care?’’ and ‘‘Would you please talk about any factors you had to consider in making your choice to receive hospice care?’’). Analysis of responses to these questions were reported in elsewhere (Noh & Schroepfer, 2014). In order to gather the background information, the participant was asked about his or her gender, age, education, marital status, and religion. Information about the participant’s primary diagnosis was collected from the hospice staff. All of the interviews were audio-recorded and transcribed verbatim. The study was approved by the Institutional Review Boards (IRBs) of both the participating hospice agencies and the University of Wisconsin-Madison.
Data Analysis For the qualitative data, conventional content analysis (Hsieh & Shannon, 2005) was used to identify themes and patterns that arose from multiple readings of the transcripts. Under this inductive approach, researchers immerse themselves in the data to allow themes to emerge (Hsieh & Shannon, 2005), rather than using a predetermined coding scheme. The primary investigator and two researchers, both familiar with the topic and qualitative data analysis, repeatedly read and categorized responses. After separately analyzing=identifying themes of the data, the three ‘‘analysts’’ met to compare the thematic categories that evolved from each of their analysis. There was initial agreement on 80% of the categories and, after discussions, reached full consensus. The text was then separately coded using the agreed upon thematic categories. The analysts met again to compare the coded text under each thematic category. Agreement at that point was 90% and after discussion, full agreement was reached.
RESULTS Participants’ Characteristics Half of the participants (n ¼ 14) were female and half (n ¼ 14) male. Participants’ mean age was 69, and the majority (n ¼ 22, 78.6%) were neither married nor living with a partner. A little less than two-thirds of the participants self-identified as Baptist (n ¼ 18, 64%), while a little less than
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one-third as other Protestant (n ¼ 8, 29%), one as Muslim, and one as having no religious affiliation. The mean years of education was 10; a range of no formal education to a participant who had two master’s degrees (>20 years of education). Participants’ primary diagnoses were cancer (n ¼ 8, 28.6%), heart disease (n ¼ 8, 28.6%), pulmonary disease (n ¼ 5, 17.9%), debility unspecified (n ¼ 4, 14.2%), and other (n ¼ 3, 10.7%).
Identified Themes Regarding Values The content analysis revealed that six themes represented the views of these older African Americans. The themes were: dying at home, independent decision-making, autonomy in daily life, burden on family, open communication, and relationships. Each theme and subtheme is discussed in the following sections. DYING AT HOME When asked about values important to them, 19 (79%) of the 28 participants talked about the value of dying at home. They expressed a preference to die at home, and all 19 of them felt that their hospice care workers respected this preference. A 94-year-old female participant stated, ‘‘I wanted to be home and I am going to die at home.’’ When asked to talk about whether her wish was respected by the hospice providers, she answered as follows: Oh, yes, they (hospice care providers) are fine with it. They don’t tell me [that I] should stay somewhere else [such as nursing home]. I bet they all knew this is where I want to be and gonna die here.
Correspondingly, a 51-year-old male participant mentioned that hospice care worked well for him because he did not want to leave home and could have hospice care providers come to his house to provide care. He added that the hospice care providers supported such preference and had ‘‘no problem in that area.’’ INDEPENDENT DECISION-MAKING Another theme was independent decision-making. Seven (25%) of the 28 participants expressed that they placed a high value on making decisions based on their own judgment. All expressed satisfaction with the hospice care providers for honoring this value. For example, a 50-year-old male participant described his decision-making process as follows: I decide what’s best for me. I ask for facts and think them over and make my own decision. When to have them (hospice care providers) come in and what to take or what not. [I] need those pills and oxygen but not the hospital bed. It’s all upon my decision.
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This participant had a good experience with respect shown in this remark: ‘‘They (hospice care providers) are really great about it. [They] always says, ‘Take your time and it’s (the decision) up to you.’ They never push.’’ Similarly, a 61-year-old female participant illustrated the value of independent decision-making: ‘‘I can feel when a person is forcing things on me, and when they force things on me, it makes me angry . . . . I decide what I want and what I need . . . . I’ve always been this way.’’ This participant also expressed satisfaction with the hospice care providers being respectful of her preference by saying, ‘‘They (hospice care providers) don’t try to force anything. Any of it. They let me decide. I feel good about it.’’ Correspondingly, a 55-year-old female participant shared a similar experience by stating as follows: Say, if I have a problem, and they’ll (hospice care providers) say, ‘‘Well, it’s up to you, Ms. [participant’s last name], what you want to do.’’ And I tell them, ‘‘Let me think about it,’’ and then I tell them what I want to do. And, then they would do their best to try to help me to get it done.
To these participants, making their own decision was an important value that they felt was respected by the hospice care providers. AUTONOMY IN DAILY LIFE Even when terminally ill and experiencing physical limitations, exercising autonomy in their everyday lives was reported as important by 12 (43%) of the 28 participants. For example, a 50-year-old male participant discussed his wish for autonomy in his daily activities as follows: They asked if I needed them to come by and bathe me and shave me and stuff. I told them I don’t need that and I can do that myself. And I just need the nurse to come out, and they just send the nurse and my social worker. I mean I don’t want to waste nobody’s time. If I can do it myself, that’s my job to do it. Somebody else come out here and do it for me when I can still do it—I don’t think it [is] right.
This participant showed satisfaction with hospice care providers’ respect by saying, ‘‘They (hospice care providers) respect what I want. They are great about it.’’ Another participant, a 90-year-old female, placed a strong emphasis on her autonomy by saying, ‘‘To tell you the truth, I’ve always been independent. I always could take care of myself. I’m doing pretty good here (home) by myself. I usually do my own house.’’ This emphasis on autonomy in daily life was also found in a 52-year-old male participant’s statement: I’m sick, sure enough, but I’m not helpless. I can walk up that street, but once I get up to that little hill right up there, I have to stop and rest for a
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little while. But, I can still walk and when I go to the store, I walk a little bit further or I can drive that green car over there.
A subtheme arose from the discussion of autonomy in daily life. In talking about the importance of autonomy in their daily lives, nine (75%) of the 12 participants put an emphasis on maintaining their mobility. Though these participants were physically limited due to their declining health, they were either making efforts to improve their mobility or wishing to recover their previous state so that they could keep their autonomy in daily life. One example was found in a 73-year-old male participant’s comment: I keep telling myself, if you don’t want to lose it, you better use it. And I’m referring to my body. Because eventually if we don’t use what God gives us, he will give it to somebody else. He will give it to somebody that will use it.
An 82-year-old female participant shared a similar attitude in her comment: I appreciate their (hospice care providers) worries about me being by myself here, but, I tell you what, I can hold on to the stove and can carry my stuff on wheels. I try to keep myself up and keep going.
While six (67%) of the nine participants answered that their hospice care providers respected that they wanted to keep mobile, the other three participants (33%) spoke about how their wish for mobility was not respected by the hospice. For example, a 73-year-old male participant talked about his wish as follows: There’s room for improvement if they had a program of exercise that they could pass on to the hospice patients—especially those that request it. I know a bunch of folks would be just as glad to forget about it, but there are others of us that—excuse me—that would enjoy doing something besides walking around that church.
Correspondingly, another participant, a 77-year-old male, strongly expressed his wish for increased mobility in his statement: It looks to me, hospice is something that they put you in your house—in your house [to] just sit down and look at the walls and die. They [are] not making my life better. I know there are people that I know, they go to the YMCA. They go to different places. They have a center that they have transportation come and takes you there for activities to get you move.
BURDEN ON FAMILY Unwillingness to be a burden to their loved ones was discussed by eight (29%) of the 28 participants, who all noted that their hospice care providers
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understood and respected this value. For example, a 50-year-old female participant talked about the care her brother provided prior to her admission to hospice care: I became a burden to him. They had to look out for me. The pain in my legs was so bad that I couldn’t sleep at night. They put me in the wheelchair and took me down to the ER. I really didn’t want to be a burden.
Similarly, a 54-year-old male participant was concerned about his wife who had multiple caregiving responsibilities: Even though now I still tell her, you know, ‘‘You just take it easy. Don’t worry about me. Take care of—just do your job and try not to worry about me.’’ But I know she can’t help from worrying, you know? Now that she’s got, we got two grandkids and she helps with them, too . . . she [has] been having to do mostly everything for me. And that took a lot out of her. That kinda bothered me.
A 76-year-old female felt that hospice care providers honored her value and provided the necessary support: ‘‘I’m asking for a volunteer because my granddaughter’s young but she stays in the house with me 24=7. It’s a hard job to do. They (hospice care providers) understood and said they’ll get somebody.’’ As much as these participants appreciated the support and care provided by their family, they did not want to be a burden to them, and all eight participants expressed that their hospice care providers respected the value. OPEN COMMUNICATION In discussing important values in receiving health care services, 12 (43%) of 28 participants noted that they wanted to have open communication with their health care providers and talked about their experience with the hospice care providers supporting their preferences for open communication. The 12 participants believed that full-disclosure of their health condition and information about the care they were receiving was important. In addition, they also thought it was important to express their concerns and ask questions of their health care providers. For example, a 50-year-old male participant talked about his preference for open communication with health care providers: I feel about anybody—I mean if you want to tell me something, tell it to me. If you [are] not gonna be honest with me and tell me lies, don’t even mention it. If you are gonna tell me something bad, tell me something bad. If you are gonna tell me something good, tell me something good. I want to know. And don’t beat around the bush.
He described his experience with hospice care providers’ respect by saying, ‘‘They (hospice care providers) don’t hold back nothing (anything) from me.
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They let me know what’s going on, and I appreciate it.’’ Truth-telling in communication with health care providers was also emphasized in a 64-year-old participant’s comment, ‘‘Be honest [with] what you see or what you may suspect. Give me the real deal, tell me the truth of it and let me deal with that. Don’t try to sugarcoat it. It is what it is.’’ In addition to the wishes for full-disclosure of their health condition from health care providers, participants talked about wanting to let their health care providers know how they feel. You’re the one who’s feeling the pains and the problems, so you have to let them know what you feel, because they can’t guess everything about you, so you have to let them know what’s what. And, I let them know if I’m feeling bad or something. (55-year-old female)
In addition to the full-disclosure of their health condition, participants wanted sufficient explanation about their condition and the health care services=treatments that they were receiving. They wanted to have health care providers who would take the time to explain their health conditions and the care provided and to make sure the patients understood the information conveyed. For instance, a 101-year-old female participant expressed her preference by stating, ‘‘I love a person going to sit down, take some time to explain things to me. Just don’t close it out to me and then leave me hanging and I’m trying to figure out what’s what.’’ A 54-year-old male participant spoke about the hospice care providers’ respect as follows: Anything that she (hospice nurse) thinks is wrong with me, she sits down and explains it to me, you know? A lot of nurses or even doctors don’t do that. They just, ‘‘I’m giving you a prescription for you to get this and get that because . . .,’’ but my nurse, she really sat down and explained it [to] me. She’s real nice.
While nine (75%) of the 12 participants felt their wish for open communication was respected by the hospice care providers, three (25%) participants reported a negative experience. For example, a 68-year-old male described his experience as follows: I felt rejected when I thought she [hospice nurse] might’ve been hiding something from me . . . . She may be hiding something to look out for me, but I still feel rejected. I wish she’d be just more open with me.
Similarly, a 51-year-old male said he was ‘‘not completely satisfied’’ with the depth of information his hospice nurse provided about the medical care he was receiving from her.
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RELATIONSHIPS Twenty (71%) of the 28 participants talked about the nature of the relationships they wanted to have with their loved ones and=or their health care providers. The content analysis of their comments resulted in three subthemes: receipt of social support, a caring and friendly attitude, and dependability. Social support. Eight (40%) of the 20 participants spoke about wanting to receive social support while they were going through a difficult time with their health. They wanted to have their family, friends, neighbors, or church members close by and without asking for them to be there. For example, a 52-year-old male participant pointed out that ‘‘still seeing his friends and relatives’’ was very important to him when he was sick. A 75-year-old female spoke about how she appreciated the visits from her pastor and her church members, and how these visits ‘‘kept [her] spirits up and were important [to her].’’ The importance of receiving social support was also mentioned by a 94-year-old female participant: ‘‘That’s (having visitors) keeping me alive. I may be sick and weak but I really enjoy seeing them and talking with them. It gives me good energy.’’ Having their loved ones when they were seriously ill provided valuable support to these participants, and all eight reported that their wish to receive social support was supported by their hospice care providers. This support was revealed through a 50-year-old female participant’s comment: ‘‘They (hospice care providers) are really nice. They let my family visit me here (hospice in-patient unit) and stay at night with me. My children are welcome here.’’ Caring and friendly attitude. In addition to the relationships with their family, friends, and church members, participants talked about relationships with their hospice care providers. Fifteen (75%) of the 20 participants emphasized that a ‘‘caring and friendly’’ attitude was important to them when it came to receiving health care services and all 15 participants reported that their respective hospice care providers demonstrated this attitude. For example, a 90-year-old female participant shared her experience of being treated badly by hospital staff prior to her admission to her hospice care agency. She was very appreciative of her hospice care providers’ friendly attitude. She emphasized the importance of being treated nicely by health care providers, saying, ‘‘When people treat you like you’re a human being that goes a long way with me.’’ This participant further described the treatment as follow: They pay attention to the little tiniest thing. I knew nothing about hospice, but I can tell you this, I have never been treated so well [as I am] in hospice. I love all of ‘em. I love ‘em to death.
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Similarly, a 68-year-old male participant discussed how he appreciated being treated with care and concern by health care providers and how hospice care providers supported his value: It’s (hospice care) like family, better than family, better than family. They are, what I like is, they are ‘‘concerned, concerned’’ about you, and they do their best to see about you. It’s what I [am] always looking for in doctors and nurses. They (hospice care providers) do their very best to see about you.
Dependability. One-half (N ¼ 10) of the 20 participants pointed out the importance of being able to depend on health care providers for competent and responsive services. A 90-year-old female participant, for example, described her hospice care providers’ dependability by saying, ‘‘They’re always there, no matter what. I had a little problem last week but they were right there for me. It’s a huge relief to know they’re there when I need them.’’ Similarly, a 54-year-old male participant expressed his appreciation for the hospice care providers’ dependability by saying: You know they (hospice care providers) always come the day they said they gonna come and call when they gonna be late. Just in case my wife or somebody is here, they don’t have to wait on them coming. They call and let you know what time they are coming. That means a lot when you receive care from somebody.
Eight (80%) of the 10 participants noted that their hospice providers did a great job supporting their wish for dependability; however, two of the participants (20%) shared negative experiences with the hospice providers’ dependability. One 51-year-old male wished that the hospice providers would be more responsive to his telephone calls as follows: I wish they could improve with answering their phones at late hours. They’re supposed to be at desk all time, somebody to pick up the phone all time, but, sometimes it’s hard to get them on the phone. I don’t want to be in no (any) emergency if I can’t get nobody (anybody) on the phone.
The other participant, a 64-year-old male, had to wait a couple of days for the hospice care providers to pay an initial visit after he was discharged from the hospital. He complained that, even after the initial visit by the hospice nurse, it took several more days for the hospice care providers to provide the medical care he needed. DIVERSITY AMONG HEALTH CARE PROVIDERS When discussing their values or preferences in receiving health care services, none of the 28 participants mentioned a preference for their hospice care
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providers’ race or ethnicity. In a follow-up question, participants were asked whether prior to enrolling in services they asked if the agency had Black providers. All 28 participants (100%) answered that they had not asked and the interviewer then followed up by asking why not. The content analysis of the reasons provided by all 28 participants resulted in four themes: (a) disinterest in hospice providers’ race=ethnicity, (b) no preference due to religious beliefs, (c) more importance on competency than on race=ethnicity, and (d) knowledge on the availability of Black providers. Disinterest in the hospice care providers’ race=ethnicity. Twenty (71%) out of 28 participants answered that the hospice care providers’ race= ethnicity did not matter to them. For example, an 89-year-old female participant expressed her lack of racial preference for the hospice care providers by saying, ‘‘I’m a human being and they’re human beings, so I didn’t think it was necessary for me to ask that question.’’ Another participant, a 68-year-old male, provided a similar response, ‘‘It doesn’t matter. People are people.’’ Correspondingly, a 92-year-old female participant said, ‘‘I didn’t think about asking that, but I feel one might not be any nicer than the other. You find some nice and White and some nice and Black. And just the opposite.’’ No preference due to religious beliefs. Three (11%) of 28 participants talked about the role their religious beliefs played in their response. They were not interested in the race=ethnicity of hospice care providers because God ‘‘made all colors and all kinds’’ (87-year-old female) and ‘‘sees about all of us’’ (82-year-old female). A 94-year-old female noted, ‘‘The color was not even a big interest to us. The color, race, or the local . . . as long as they were people who would enter the spirit of Christ.’’ More importance on competency than on race=ethnicity. Four (14%) of the 28 participants placed more focus on the hospice care providers’ competency than on their race=ethnicity. For example, a 54-year-old male participant answered, ‘‘I have no feeling about that (hospice care providers’ race=ethnicity), you know, as long as they’re ‘capable.’’’ This attitude was also found in a 68-year-old male participant’s remark: ‘‘I didn’t think it mattered as long [as] you knew you’re getting good care from someone who knows what they’re doing. If we [are] Black or White or what, it don’t made no difference.’’ Knowledge on the availability of black hospice care providers. Three (11%) of the 28 participants answered that they knew or assumed that the agency would. One participant, a 75-year old female, was already aware of the availability of Black care providers through her previous experience with the agency when her late husband received care from that agency. Another
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participant, a 54-year old male, assumed that the agency would have Black care providers because he had seen many Black staff at other health care agencies in the area.
DISCUSSION Participants discussed the values they considered important in receiving care from their hospice care providers. These included: dying at home; independent decision-making; autonomy in daily life; unwillingness to be a burden; open communication; and supportive, caring, and dependable relationships. Three of these six values—independent decision-making, autonomy in daily life, and unwillingness to be a burden—centered around the sense of independence. The participants clearly sought to remain as independent as possible by making their own decisions, performing everyday activities on their own for as long as they were able, and not placing a burden on loved ones. Such findings are consistent with seriously ill older adults’ values reported in the previous studies with mostly White samples (Schroepfer, Noh, & Kavanaugh, 2009; Steinhauser et al., 2000). Therefore, these findings suggest that there is a similarity across racial groups regarding values important to older adults with serious illness. Another value that participants discussed was the role of open communication with health care providers. These participants wanted full disclosure of their health condition and sufficient information regarding their health care options from their health care providers. Considering wishes to make their own decisions based upon information provided to them, it is easy to understand that open communication was of critical importance to participants. This finding is similar to previous research findings about the importance of open communication in seriously ill patients across all racial groups (Steinhauser et al., 2001; Steinhauser et al., 2000). However, it contrasts with the findings from previous literature about minority families who keep terminal diagnosis=prognosis from the patient, as a way to protect the patient from emotional distress (Noggle, 1995; Winston et al., 2004). The contradictory findings may suggest that nondisclosure may not accurately meet the cultural and communication preferences of many African Americans. It should be also noted that there might have been a shift in African Americans’ attitude toward full-disclosure since previous findings on end-oflife communication were reported. Participants also placed an emphasis on supportive, caring, and dependable relationships with their family, friends, as well as health care providers. This finding adds to the previous findings about the importance of quality social support and relationships among seriously ill individuals (Kelly et al., 2003; O’Mahony et al., 2005; Schroepfer, 2008). The participants in this study appreciated visits and calls from family, friends, and church
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members, and wanted them to be nearby as a source of emotional support. As for the relationship with their health care providers, participants wanted someone with a caring and friendly attitude upon whom they could depend to be competent and punctual in providing care. The participants reported that these attributes were more important than the race=ethnicity of their hospice providers. This finding is in sharp contrast to previous research on minority patients’ cultural preferences in receiving health care services that found that African Americans wanted to have a health care provider who shared with them a common racial and cultural background (Burrs, 1995; Reese et al., 1999; Cort, 2004). It should be noted, though, that all three hospice agencies had many African American hospice care providers and some participants recalled African American care providers visiting them during the admission process. Furthermore, the urban areas of Georgia, where most of the participants resided, traditionally have a large number of African American populations. Due to this community racial composition, participants may have expected to have at least one African American hospice care provider. As one participant stated, ‘‘Well, considering the fact it’s (the race= ethnicity of hospice care providers) not really important for one. For two, this is Atlanta, so we’re (African Americans) everywhere, you know.’’ It also needs to be considered that African Americans’ preference for racial=ethnic background of health care providers might have changed since previous studies were conducted. Overall, participants felt that their values were respected by their hospice providers; however, a few participants discussed some areas where they felt improvement could be made—including a need for sufficient information, hospice programs to improve mobility, and dependable hospice care providers. Likewise, participants had a list of values that they wanted to have respected by their hospice providers and that could have affected their use of hospice care if not respected. The findings for the older African American hospice patients in this study are similar to previous research findings about seriously ill older adults’ values in mostly White samples and, therefore, may not be unique to the African Americans. The findings of this study, however, are based on a small sample not intended to be generalized. Future research with larger samples is needed to extend our knowledge about older African American hospice patients’ values.
STUDY LIMITATIONS This study addressed gaps in prior research by: (a) focusing on values held by African American older adults who are receiving hospice care, while previous studies mainly explored values of those who chose not to receive it; and (b) collecting information directly from hospice patients rather than from chart or proxy. However, three primary limitations of the study’s results exist. Due to the nature of the purposive sampling method, only the views of those
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who voluntarily participated were captured. These participants may have had values and experiences in receiving hospice care that were different from those who decided not to participate in the study. This study recruited participants with intact cognitive ability and, therefore, the findings of this study do not reflect the values and experiences of patients with cognitive issues. Proxies of such patients should be interviewed in future research to explore the values proxies consider important in choosing hospice care for their loved ones and their experiences in having the values respected by hospice care providers. Also, participants in this study may not have been completely open about their values or preferences in receiving health care services and their experiences with hospice care providers. Before each interview, the interviewer explained participant their rights and made sure that they understood that the interview and his or her identity would be kept confidential. However, participants may have still felt uncomfortable discussing openly their values and experiences for fear of offending their hospice care providers and having the health care they receive compromised. It should be noted that the participants in this study were interviewed by either an African American or a Korean native interviewer. The participants’ responses did not seem to differ by the interviewer’s race in this study. Nevertheless, the potential impact of an interviewer’s race=ethnicity should be considered as a factor in the design of future studies about similar topics with older African Americans because of racial discrimination in various care services.
Future Research The findings of this study provide implications for future research. The findings suggest that future research explore terminally ill African American older adults’ preferences for a full disclosure of their health condition with a bigger sample size from a longitudinal perspective. The findings of this study are based upon a small number of participants at one time point in their terminal illness trajectory. A longitudinal study, with a larger sample, could provide more insight into what preference they have regarding a full-disclosure and how their preferences might change over time. Future research should also consider making comparisons between terminally ill African American older adults who opted for hospice care and who did not. Knowledge from such comparison will enhance our understanding of values important to terminally ill African American older adults and of any differences in values between hospice and nonhospice users among African Americans.
Social Work Practice Implications Hospice social workers can assess patients’ preference for the level of independence and autonomy they want to try to maintain in their daily activities.
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The hospice team members then can be made aware of the result of the assessment and support the patient’s wishes. Patients will likely feel more comfortable in allowing hospice care workers into their lives knowing that they still can maintain a sense of autonomy and control over their lives. As independence was found important to older White patients as well (Schroepfer et al., 2009; Steinhauser et al., 2000), assessment of this value by social workers can be useful for seriously ill older adults in both racial groups. Hospice social workers can also assess patients’ preference for the level of open communication about medical condition and treatment and share their assessment with team members. This assessment can be used to help hospice care providers adjust the amount and depth of information given to patients. This assessment should be ongoing because patients’ preferences may change as their illness progresses.
CONCLUSION The current study explored values important to older African American hospice patients. Participants expressed the need to have independence, social support, and open communication respected by their hospice care providers. It is imperative that hospice providers explore and understand values and preferences of older African Americans to be able to incorporate them into service delivery. Providing service in a way that respects values could improve older African Americans’ experience with hospice care services. Examples of successful intervention and care can be promulgated within the African American community in an effort to increase use of hospice care among seriously ill older African Americans.
ACKNOWLEDGMENTS The findings of this study were presented as a poster at the 66th Annual Scientific Meeting of The Gerontological Society of America, November 19–24, 2013, New Orleans, LA and at the 18th Society for Social Work Research Conference, January 15–19, 2014, San Antonio, TX. The author would like to acknowledge Dr. Melinda Kavanaugh for her comments on an earlier version of the article.
FUNDING Support for this study was provided by University of Wisconsin-Madison Population Health Dissertation Grant sponsored by the Robert Wood Johnson Foundation Health & Society Scholars Program (grant no. 67959).
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