Original Article
Decisions and Caregiving: End of Life Among Blacks From the Perspective of Informal Caregivers and Decision Makers
American Journal of Hospice & Palliative Medicine® 2015, Vol. 32(4) 454-463 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114529013 ajhpm.sagepub.com
Norma E. Conner, PhD, RN1, and Susan K. Chase, EdD, RN, FNP-BC1
Abstract This focus group study describes end-of-life caregiving and decision making among blacks from the perspective of the informal caregivers and decision makers. The Behavioral Model of Health Services Use framed the study. Five focus groups with a total of 53 informal caregivers/decision makers were conducted. A qualitative phenomenological approach was used for the data analysis. Findings are presented under the themes of end of life caregiving and decision making roles, dynamics and process, and beliefs and values. The common thread of care giving and decision-making within relationship and six subthemes were identified. Findings also suggest the need for support and inclusion of designated informal caregivers and decisionmakers in the advance care planning process early in the disease trajectory. Keywords end of life, decision making, caregiving, blacks, focus groups, qualitative
Introduction Black men and women have a higher death rate in comparison to their same gender, white and Hispanic cohorts.1 Blacks differ greatly from whites in their patterns of morbidity and mortality.2,3 Just as for whites, heart disease, malignant neoplasms, and cerebrovascular disease remain the top 3 causes of death for blacks; however, blacks die at a younger age of these diseases.3 Beyond the top 3 main causes of death, blacks vary widely from whites in the remaining top 20 causes of death, with diabetes mellitus, nephritis, and human immunodeficiency virus/AIDS ranking higher among blacks than whites.3 Blacks differ from whites in their treatment preferences at the end of life (EOL). In comparison to whites, blacks are more likely to choose a full code (P < .001) and less likely to accept a ‘‘do not resuscitate’’ status or discontinue life support (P ¼ .03 and P ¼ .005), respectively.4 Blacks are also more likely to continue with chemotherapy even in the face of medical futility.5 In addition to making selections that prolong life, blacks do not select services that could provide supportive care at the EOL such as hospice, only comprising 8.5% of hospice patients in 2011.6 Blacks also do not readily complete advance directives citing conflict with religious beliefs, the health system reflecting the negative behaviors of society creating distrust, and that a trusted loved one is the preferred EOL decision maker rather than a formalized document.7 A recent report by the National Institute of Nursing Research identified the need for future studies on caregiver psychosocial needs, stressors, caregiver characteristics,
including racial and ethnic characteristics, that may impact end-of-life (EOL) care needs, and service use preferences.8 Furthermore, research is needed that clarifies the diversity of beliefs and values influencing preferences for EOL and palliative care and the behavioral mechanisms that play a role in advance care planning.8 This study identified some psychosocial processes and beliefs and values of caregivers in EOL decision making.
Background A review of the literature specific to EOL health decision making and caregiving among blacks revealed studies on (1) caregiver actions, (2) preferences and decisions for loved ones with cognitive impairment, (3) satisfaction with their loved ones’ care, and (4) congruence between patients and their surrogates on EOL decisions. African Americans caring for those with Alzheimer disease were more likely to care for their loved ones at home until death and did not view the death of the loved one as a relief, rather as a loss.9 The dementia of a loved one was more acceptable to African American 1
University of Central Florida, College of Nursing, Orlando, FL, USA
Corresponding Author: Norma E. Conner, PhD, RN, University of Central Florida, College of Nursing, 12201 Research Parkway Suite 300, Orlando, FL 32826, USA. Email: [email protected]
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caregivers and did not seem to influence surrogates to choose less aggressive treatments as compared with whites.10 African American decedents compared to whites were less satisfied with the care received by their loved ones and with the communication with health care providers.11 In studies of patient and surrogate decision maker congruence in EOL decisions and preferences, results are mixed. Some studies reported confidence by surrogates to carry out their loved ones’ EOL wishes. In reality, this confidence was unsubstantiated, as they could only indicate (1) general patient preferences, (2) preferences reflective of the surrogate’s beliefs, and (3) a disposition for lower levels of treatment as compared with the patient.12-14 This was particularly true when patients did not formally articulate their specific EOL preferences.12-14 Studies have also shown that the patient’s family and physician play a role in EOL decision making.15 Yet, this process is only partially understood, as most of these studies have been from a patient’s perspective.15 Prior studies suggested the need for research from the perspective of the caregivers and decision makers about their roles and relationships with the dying individuals with whom they were involved, their own beliefs and values pertaining to EOL, and the decisionmaking process itself.10,11,14,15 Understanding how those decisions are made and examination of the role of the caregivers and decision makers may add valuable insight for health professionals working to alleviate health disparities. Andersen’s Behavioral Model of Health Services Use (2008) supports the influence of multiple determinants, including beliefs and family factors on health services use including EOL care.16-18 The model depicts contextual factors of the community and individual factors as impacting health behaviors and eventual health outcomes.16 Both the contextual and the individual determinants consist of predisposing, enabling, and needs factors. The contextual and individual predisposing factors are considered to be demographics, social structure factors such as education and ethnicity, and beliefs and values.16 The enabling factors at the contextual level include health policy, financing, and organization and at the individual level include financing and organization measured by insurance status, income, and regular source of care.16 The needs factors at the contextual level are represented by environmental factors and population indices and at the individual level as perceived (patient’s perspective) and evaluated (professionally assessed) need.16 Taken together these 3 factors influence health behaviors (personal health practices, health service use, and process of medical care), which then impacts health outcomes (perceived and evaluated health and consumer satisfaction).16 The Behavioral Model of Health Services Use provided the theoretical framework for this study. Informal caregivers and decision makers articulated contextual and individual predisposing and enabling factors that impacted health behaviors and health outcomes. Needs factors were identified, however, only from the caregiver/decision maker’s perspective. The purpose of this study was to describe (1) various informal support relationships and the caregiving and decision-making
roles therein, (2) dynamics of the caregiving/decision-making process, and (3) beliefs and values about EOL care, among blacks who have experienced caregiving or health decision making for a seriously ill loved one. The research questions were
What are the various informal caregiving/decisionmaking roles among blacks pertaining to EOL care? What are the dynamics of the caregiving/decisionmaking process among blacks? What are the beliefs and values about EOL care among black informal caregivers/health decision makers?
Methods Study data were collected using a focus group methodology. A total of five 90-minute focus groups were held in 2 counties in southwest Florida. Participants were recruited from black religious congregations. The principal investigator (PI) contacted the formal church leadership to gain permission to recruit participants from the congregation and was then put in touch with an intermediary at each congregation. These intermediaries were aware of congregation members and some surrounding community members who had experienced the role of informal caregiver or decision maker for a dying loved one. Additionally, the intermediary served as the liaison between the PI and those invited to participate in the study. Institutional review board approval was obtained for the study. Each focus group session took place in a meeting room of the worship facility. Those agreeing to participate met once for the focus group interview. There was no follow-up with participants. Refreshments were provided during the session. Participants were seated around tables facing one another. The study purpose and procedures were explained, and each participant signed an informed consent. Once agreeing to participate in the study, participants received a US$20.00 honorarium to offset any costs they may have incurred to participate in the study. Each participant completed a demographic data sheet. The PI used a pilot-tested interview guide to facilitate the discussions. Each session was audiotape recorded. The tape recordings of each session were transcribed verbatim by a transcriptionist. A research assistant was present to help facilitate each session and to assist with participants who became upset discussing their experiences with a loved one who may have already died. There was a debriefing time at the end of each session for those that wanted to discuss their experience. Participants were also given a sheet of community resources for follow-up counseling or bereavement services if they wanted to avail themselves of those services.
Data Analysis Data analysis consisted of a qualitative phenomenological approach with the intention of uncovering the unique perspectives and meanings of EOL caregiving and decision making
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456 Table 1. Codes Related to Themes of Decisions and Costs.
Table 2. Caregiver Characteristics.
Codes related to decisions
Codes related to costs
Variable
Need to decide living will Decision making by daughters with mother comatose Decision for nursing home Needing to work the group Getting all in agreement Patient controlling the process
Duty not really universal Being stuck
Age, years 65.79 (13.58) 28-88 Years of 13.57 (4.26) education Marital status Single Married Divorced Widowed Partnership Religion Roman Catholic Protestant None Missing Advance directives No Yes Other Missing Expecting to be a caregiver No Yes Other Living with the person you expect to care for No Yes Other
Left home to be with her Rotated care nightly The cost of duty Wife quit job to care for mother Amputation decision Took care of both mother and mother-in-law Patient refused hospice and demanded Went to nursing home daily sister stay home to care for her to be sure she was OK Distrust of system
among caregivers of family members or loved ones near EOL. Separate transcripts were created for each focus group. Each transcript was coded for themes independently by the 2 authors. In order to allow for the most open interpretation, no a priori set of codes was used. Codes from each transcript were compared, and small categories of codes were collected under larger themes. For example, from focus group 2 ‘‘making decision/need permission’’ was similar to a code from focus group 1 ‘‘plan for how to decide.’’ The theme of decisions was often related in the text with codes related to personal losses such as ‘‘the cost of duty’’ and ‘‘being stuck.’’ A representative list of codes related to ‘‘decisions’’ and ‘‘costs’’ is presented in Table 1. Each step of data analysis closely followed the systematic and verifiable methods of data analysis for focus groups outlined in the literature.19,20 The themes derived from the coding process were organized by the foci of the research questions: (1) caregiving/decisionmaking roles; (2) dynamics of caregiving/decision making; and (3) beliefs and values about EOL care. In some cases, themes overlapped the focus areas.
Results A total of 53 informal caregivers/decision makers, 7 black men and 46 black women participated in the study. The mean age of the caregivers/decision makers was 63 years, and the range was 28 to 88 years of age; and the mean years of education were 13.57 years. The plurality of participants was married (n ¼ 24, 46.2%), was Protestant (n ¼ 28, 88.5%), expect to be a caregiver again (n ¼ 42, 80.8%), and of those they intend to care for (n ¼ 29, 55.8%) and had not completed an advance directive (Table 2).
Caregiver/Decision-Making Roles Caregiver roles for the participants in this study revealed a complex range of associations, activities, and commitments. There was a great deal of variation among the participants with regard to the relationship between the caregiver/decision maker and the dying loved one. Participants cared for/made
Mean (SD)
Range
Frequency
Percent
5 24 4 18 1
9.6 46.2 7.7 34.6 1.9
2 46 1 3
3.8 88.5 1.9 5.8
29 21 1 1
55.8 40.4 1.9 1.9
8 42 2
15.4 80.8 3.8
25 19 6
48.1 36.5 11.5
Abbreviation: SD, standard deviation.
decisions for their spouses, parents, grandparents, great grandparents, parents-in-law, siblings, aunts, uncles, friends, and neighbors. The time they spent in the role of caregiver/decision maker ranged from 2 to 28 years. The conditions of their dying loved ones included Alzheimer disease, cancer, kidney failure, diabetes, stroke, and cardiac disease. Roles of the caregivers and decision makers were most often task defined and included physical care (ie, bathing, personal care, changing catheters, and feeding), financial/paperwork management, and general care management (coordination of services/providers or advocating for the patient). Decisions made by the study participants included consent for amputations, nursing home placement, beginning and ending life-sustaining treatments, having surgery, resuscitation, funeral arrangements, and placement of children orphaned by the death of a parent. Data analysis revealed that the overarching theme of caregiving and decision making within relationship dominated this experience. The relationship was the basis of the caregiving experience and provided context and reason for the commitment required to face both the decisions that were demanded and the actions that then followed. Several subthemes emerged within this overarching theme including (1) preordained role assignment, (2) roles challenged societal norms, (3) honoring promises, (4) depth of feelings, (5) valued relationships versus personal costs, and (6) beliefs and the healthcare system.
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Preordained role assignment. In many cases, participants stated that the decision-making role they played at the end of their loved one’s life was simply a continuation of an ongoing decision-making role they previously held within their family. Others found themselves in uncharted waters when they became the singular decision maker for their loved ones. One woman shared instances where she engaged in decision making about her family homestead: Well I’m not the oldest, but when it was a roof that needed to be put on our house, my Dad called me, and then I’d call and let everybody know, and when we put an air conditioner in our home, I chose the gas A/C.
Even in the face of many available family members, 1 person would be chosen for the decision-making role. One participant shared that she was 1 of the 13 children, and in spite of so many family members, she alone seemed designated as the family decision maker: Yeah, I was the one they came to if there was an issue. I ended up falling into the routine that when they need something done, okay, call me! But that is what it boiled down to.
Other participants echoed the same experience: There’s just the three of us. I was always the one making the decisions. So even now, my brother said, you know, you make them so well; you can be the one that makes the decisions.
And With my family, it’s a lot of them, and a lot of different personalities, and when it comes to an important decision, you can’t really rely on some of them because they’re just in the moment. So it has to be one stable person that says ‘‘This is the way it’s going to be. . . . Get with the program.’’ They come up with something like over the head idea, and I’m like, well, okay, we’re not going to do that. I think it’s because . . . I am the stable one.
Sometimes, individuals thrust into a decision-making role are unfamiliar with taking on this role alone. A participant who had to make decisions about her spouse expressed this: And you always wonder if you make the right decision since this always has been a shared decision. You always wonder, ‘‘did I do the right thing? Was this what he would want me to do?’’ You just don’t know in that case.
Roles challenged societal norms. Traditionally, women are seen as caregivers, but in this sample, women were tapped as decision makers in multiple ways, as evidenced previously. Men became physical caregivers, as one emotionally admitted about caring for his mother:
Everything that a CNA would do at the hospital, from changing the catheter to cleaning the catheter; I did everything . . . and that really hurt.
In some cases, the men in the family were kept out of the daily care of a loved one, but when advocacy for the patient was needed, the men were undeterred even to the point of using extreme force. The following scenario occurred after the family’s mother went into a diabetic coma while hospitalized: My brother drove from Fort Lauderdale, . . . and he had a shotgun. ‘‘I dare anybody to say anything to me, I want to find the so and so that did this to my mom.’’ And he’s sitting there with his gun on her bed, and said, ‘‘I dare you all to move.’’ So we refer to our brother as the A-team. We filter stuff out, and give them the good version, because both of them would tell you what he said, ‘‘I’ll go to prison, I have no problem with that. Don’t bother my sisters or my mom and dad.’’
The experiences shared here prompt an expanded understanding of the relationship between caregiver/decision maker role and gender. They also suggest that family roles are determined years prior to EOL and should be explored by nurses providing EOL care. Nurses must also develop open lines of communication with caregivers and decision makers to stave off potential incidents of violence.
Caregiving Dynamics/Decision Making Process Findings from this study indicate that caregiving and decision making are dynamic processes with great diversity, yet woven through the following themes is the concept of caregiving and decision making in relationship. Care is given, and decisions are made within the context of the past relationship with the patient and the ongoing and future relationship with the patient and other family members. Caregiving dynamics and decision-making process themes include honoring promises and depth of feelings. Honoring promises. Participants shared that in some cases advance directives were not completed, but discussions took place where the caregivers/decision makers gave their word that they would carry out the patient’s wishes. Several participants expressed their strong commitment to their dying loved one as the reason for their dedication to decision making and caregiving until their loved ones death. One woman’s mother made her 7 children promise that all decisions would be made with total consensus. Pressure was not to be used to influence the siblings to concede. It was clear that this mother understood that the siblings needed to be able to remain in relationship with one another after her death: . . . amputating my mother’s leg. I had a dream that it appeared that my mother’s leg was still there. So to me, that was a message to me, saying, ‘‘Don’t do it.’’ Well my family was saying, you know it’s the gangrene and you need to go on and . . . the doctors . . . had to get a little bit more creative to convince me. And when they
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458 did . . . what they saw, that they said was gangrene, it was something else. So for me it validated my presence. It made them go back and study some more . . . it was about six months before my mother’s leg eventually was amputated. But it made me feel more comfortable that what I felt was right.
One older gentleman shared his enduring fidelity to his wife: Sometimes I have a hard time, but through it all I try to do the best I can. . . . I cope with it, because that’s my wife, and the Bible says we should stay together until death do we part, whether we sick or whatever, and this is what I do. . . . we going to have hills and we going to have mountains . . . If it’s a mountain, we’re going to have to ask the Lord to help us go down and come up. I always carry a smile when I’m around my wife, even if I’m hurting. Because we’re all human, and once you get around a sick person . . . sometimes you get real low, and then when you come to church, and you hear the preacher preach, or you hear the Bible study, or you hear things about the Bible, it’ll show up again, so when I go home, I’m filled up, not to worry, but to rejoice . . .
Similarly, a woman discussed her commitment to her brother until his death: Well I left and went away and took care of my brother until he passed away. And when he passed I was almost ready to go myself. When I would get up and leave him, he’d say ‘‘Where’s that Ol’ Hen, she done gone?’’ . . . That’s the only thing. He wouldn’t want me to go, he wanted me to sit right there, but as far as worrying me, he would get up and go to the bathroom, . . . eat his food and ate for the last time. He pushed the plate away, and smiled, and then went away in my arms. The only thing, he didn’t want me to leave him. I was his Ol’ Hen.
In these examples, the nature of the prior relationship and the shared life perspective of the family provide a filter for the decision making and for the human responses to caring demands. The commitment to the promises made seemed as binding as any formal advanced directive. Depth of feelings. It can be expected that caregiving and decision making for individuals who are dying would elicit a range of emotions. In this study, the rawness of the expressed feelings by the participants, and decisions made based upon these feelings, was surprising. None had sought counseling or support in dealing with these emotions; rather they owned them as part of the real human experience of being caregivers and decision makers at the EOL. One man expressed fear in caring for his mother who had Alzheimer disease: So the fear involved the wandering. Someone always had to be diligent and awake at night. And you just couldn’t live that way. I would just lie across the front door, get a chair and lay across the front door, and as she’d come to the door, I’d know to wake up.
And we just couldn’t handle it anymore, I didn’t want to put her in the nursing home, but I just had no other choice.
A young woman who had taken care of 2 aunts expressed her anger at them for what she perceived to be their roles in their diseases and eventual deaths. Although her aunts had been dead for a while, her anger was still very present. And no matter how many times you try to direct them to do the right thing, with their medications and food, it was like a constant battle; trying to tell somebody to try to live, and they just didn’t choose to do it. So it was just horrible. There’s a lot of anger towards both of them.
A woman who cared for her terminally ill sister expressed her feelings of anger that she referred to as stupidity for allowing herself to be manipulated into being her sister’s exclusive caregiver, to the detriment of her own health: . . . she did not allow anybody else to do anything. She wasn’t taking any medications from anyone. . . . She kind of hand-picked you. She kind of indicated that you were the one she was going to rely on. And it does get to be to the point where I felt stupid with it. I mean, if you let it happen, it really drains you, so you gotta know that this is what you want to do. Because I mean I’m talking about losing 15 pounds.
Another participant expressed feelings of hurt and fear because her mother and an aunt had chosen to maintain their independent living arrangements rather than moving in with her: . . . nobody wants to cooperate that way. And that really hurt me, because I couldn’t make anyone come live with me. They still wanted their own personal space and independence. I am afraid that people know that she is there alone, you know, and I’m afraid they may try to go in and harm her.
By comparison, 2 different participants expressed a deep love and forgiveness for those they cared for or made decisions for. In 1 instance, this love was expressed in spite of difficulties faced in the caregiving role: The whole trick to that is being able to prepare yourself enough that in spite of how they treat you (they’ll treat you bad), but you have to treat them with respect. But in order to get their way they will treat you bad, to try to get you to stay away, but you have to get past your feelings. And my wife will tell me, I’m not going back over there, I got treated so badly. And I’d say, baby, you have to get past your feelings, and truly love them.
In the other case, the feelings of love from the caregivers rendered them ineffective in managing the care of their loved one: . . . there were signs that we didn’t recognize and her Dilantin levels dropped low . . . the nurse was coming in, and she caught this,
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and then you know she had to go to the hospital a couple of times because of it. Well, you know, we finally caught on, but then we were killing her with love.
These illustrations showed that the caregivers were aware of their feelings but did not allow their feelings to prevent them from providing the care that they felt was best for their loved ones. Despite feeling used at times, they were able to respond in love. Again, the expression of caregiving, despite at times negative emotions, was central as it was based on the relationship with the person nearing death.
Beliefs About and Values of Caregiving and Decision Making at EOL Valued relationships versus personal costs. Participants recognized the tangible costs and sacrifices they incurred to provide care and make decisions for loved ones who were dying. These losses included job loss, physical tolls (weight loss, loss of sleep, or rest), life ‘‘put on hold,’’ and time away from their nuclear family (wife and children) to provide care to dying loved ones. Yet they were reticent to label them as costs, as such an acknowledgement would show disrespect toward their dying loved ones. Some stated the costs they incurred were actually a debt paid to the loved one for previous love and caring bestowed upon them by the dying loved one. One gentleman related his experience of caring for his mother as repayment for the care she gave him when he was a child. I was faithful and I worked, when I got off work, I went to see her, stayed there until about 10 at night, and I did that weekly. Sometimes a week would go by and I would just see my wife in passing, say ‘‘Hey how are you doing?’’ You know, call her on the phone. . . . She [mother] carried me around for 9 months. I was part of her, I was in her and everything . . . She like gave up her life, there were times that there were parties, maybe she wanted to go out with her friends, and she had to take care of me. We had that little bond.
A female participant expressed a similar sentiment about caring for her mother: My Mom, she had Alzheimer’s . . . Every time I took my vacation, my vacation would be to go care for my mom . . . I didn’t mind at all . . . I loved it. She was Mom, after everything she had done for me . . . We refused to let her go to a nursing home, my sister and I. We decided between the two of us, we would do it regardless . . . I had my mother down here for three months. . . Oh yeah I worked . . . and when I went to work at 7:00, I had to have all this done, the bath, the food, she had abscesses on her one leg, and I had to give her a whirlpool bath. Well I didn’t have to, but I chose to.
Caring, costly as it might be, was the way of living out the relationship that had preceded the current demands. It was a burden from which participants did not seek to be relieved. Not
to live out the caring would have been a statement about themselves and about their relationships. Beliefs and the health care system. Participants shared their perceptions of not being given all the necessary information to make an informed choice and not being given enough time to make decisions, resulting in discomfort with the outcome. Also some shared that their loved one had experienced bad care that resulted in pain or suffering by the dying individual. There was no indication that these participants believed a partnership existed between themselves and health care providers. The health care and social service systems themselves were not described as supportive to decision makers. One woman discussed her experience in trying to get services to help her mother: At first it’s very frustrating because everywhere I went for medical assistance, the doors were closed. . . . everybody’s office was open from 9 AM to 5 PM. You didn’t have a chance to call and make contact, during the day, once you got off of work, you couldn’t do anything. . . . Trying to get assistance as far as paying bills, I’d never want anyone to have to go through HRS, this place and that place. And it’s like these people, this is their money, you know and they talk to you like you are a nobody. It was just a horrible, horrible experience.
A gentleman shared a phone call that he received, which illustrated the lack of understanding among health care providers for the need of time for making decisions. I know when my father was ill, . . . they called me like at 2:00 in the morning to ask me if my father had a living will and I didn’t know what a living will was, and my response was ‘‘He has a will to live.’’ . . . so I went down to the hospital, and just said do whatever you need to do to keep him alive. . . . I had never even thought about saying, let him expire.
This kind of missed communication can result in a lack of openness and trust between lay caregivers and professionals. It can result in health care actions being taken that might not be in the best interest of the person dying, the caregiver, or the health care system. Another woman asked why the health care team only comes to you when the situation is dire and decisions are needed quickly: They come at a sensitive time when they’re going into a coma and they come out rushing to you, ‘‘Here sign this paper.’’ Why is it that they do that at that point? Why can’t a person be given those papers at the beginning when things aren’t in a grave position? Here you are, trying to make a decision, you may be the only one at the hospital, and you’ve got to make that decision, and it may not be in agreement with everybody else.
The need for families to discuss critical decisions is not supported by crisis decision making. Similarly, 1 woman illustrated her misinterpretation of the situation, how this guided
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460 her decision making, and her perception that she was being circumvented in favor of her eldest daughter. After that I’m still not seeing what they’re seeing. I guess because I was in denial. They just started overlooking me and going to my older daughter, because I think they were a little stronger than I was with it. So I had figured, well he’s on life support, so he’ll be fine, he’ll come around. . . . but it was years later before I found out that no, life support doesn’t keep you here.
Language that makes sense to health care professionals, even if it is in common usage, cannot be assumed to be understood from the same perspective by lay caregivers. There were several instances, shared by participants, of negative opinions of those in health care and social work. One participant discussed a lack of continuity pertaining to advanced directives: And every hospital I went to, nobody communicates with nobody. ‘‘Why don’t you just fill out another one?’’ But which one is legal?
One participant connected his opinion of health care providers to the avoidance of nursing homes as a source of care: . . . whether it’s a hospital or a nursing home, you have some nurses that care, and you have some that don’t. . . . when you have individuals hollering for help and the nurses are standing right out the door and don’t go see what they need or won’t go to help I wouldn’t ask anybody to put anybody in a nursing home if you are able to do for them every day.
The impressions of the caregivers and decision makers are important because they will later share their experiences with others in the community, particularly with regard to what services are available as expressed by 1 participant: The mere fact that in the black community, the only way that individuals get that is from word of mouth. . . .
The data were rich, and the quotes here are just exemplars. There were many more expressions by participants that further supported the themes presented here. Participants offered their care to persons who were dying based on a deep commitment to the relationship that connected them. Although they knew the costs they were bearing, they were willing to continue to care. They expressed the need to have more clear communication regarding the health status of their loved one and about what treatment options meant. They were capable decision makers in many aspects of the life of the person who was dying, but they often felt disregarded by the professionals in the health care system, which diminished their participation in decision making regarding EOL.
Discussion This study directly responded to the calls for research made by authors of prior articles. These authors suggested a need for research that was naturalistic and qualitative in nature that
described the decision-making processes experienced by real families, identified the human costs of the decision making and caregiving role, and viewed EOL decision making from the perspective of the patient and family considering culture and historical legacy in order to move the knowledge forward in this area.5,7,21,22 Although it cannot be said that the experiences shared by participants in this study are exclusive to blacks, it can be said that these experiences accurately reflect EOL caregiving and decision-making roles, dynamics and processes, and beliefs and values among blacks who chose to participate.
Decision Making and Caregiving Roles This study validated the prominent role of family members in the black community in the EOL decision-making process and additionally identified places where health care providers fall short of providing appropriate support. For some participants in this study, health care decision makers had assumed the decision-making role in the family well before their family member was dying and in connection with decisions related to the functioning of the household or other nonhealth concerns. Health care providers need to determine how families make decisions early in the disease trajectory. These findings support Andersen’s suggestion that social networks and interactions as part of the predisposing factor of social structure influence health services use by individuals.17 Findings that dispelled preconceived biases of caregiving as a female role and decision making as a male role should cue health care providers to consider and offer support to males and females equally called and willing to act as both caregivers and decision makers for their loved ones.
Caregiving Dynamics/Decision-Making Process The concept within relationship was woven throughout the themes of honoring promises, and depth of feelings revealed when participants discussed their caregiving and decisionmaking processes. Previous studies using hypothetical vignettes to elicit EOL decision-making responses artificially presented the process as insular and isolated.22 In contrast, findings in this study provide the depth and breadth of impact of real caregiving and decision-making experiences. Decisions made for dying loved ones are meant to be honored even through adversity. In the poignant example of advanced care planning, a mother focused on consensus decision making among her children, rather than her own treatment preferences. This woman’s decision makers in turn also focused on the process of consensus and not the decisions to be made. This study confirmed that most dying family members did not complete advanced directives. There was, however, an expressed belief by the terminally ill person that the decision maker knows what his or her wishes are for EOL treatment and care. The reality shared by some is that the decisions they were faced with making pertained to scenarios that had not been discussed with their dying loved one
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or other family members. Therefore, they were making decisions that may not have been consistent with the wishes of their dying loved one. Andersen suggested that the family was originally the focus of the model of health services use.17 He also acknowledges beliefs and values as influential in the use of health services by individuals, and that once the measurement of these variables improves, their influence on health services use will become more evident.17 Therefore, findings from this study may allow for an expanded understanding of Andersen’s model that includes family member beliefs influencing the health services use of individuals. The depth of feelings that were revealed by the participants had important implications. First, none of the participants discussed follow-up counseling or management of their feelings, although the positive effect of religious service participation was shared. In a recent iteration of his model, Andersen includes the process of medical care, which encompasses patient counseling and the communication between health providers and patients, as important to health services use.16 Participants in this study did not report positive communication with health providers. Health care providers should evaluate the emotions of caregivers and decision makers and provide appropriate resources. Second, some care decisions were made based upon the feelings and emotions of the caregiver/decision maker. Fear of harm was a catalyst for seeking safer care alternatives such as nursing home placement for the loved one. When their loved one’s needs exceeded caregivers’ and decision makers’ ability to meet them, caregivers and decision makers expressed fear and other emotions and initiated the use of formal health services. Andersen suggests that the need variable continues to explain more of the variance in health services use than the predisposing or enabling variables in the model.17
Beliefs and Values Societal values include job and financial security, yet the blacks in this study valued their family relationships more than job or money. Caregivers in this study valued equally their relationships with their dying loved one and relationships with members of their nuclear family. There was an underlying belief that they were repaying a debt they owed to the one who was dying. The nuclear family members understood this commitment and assumed a supportive role that allowed their loved ones to carry out their caregiving roles without repercussions. In some cases, when there was a clash between the caregiver and the patient regarding health beliefs, such as beliefs about smoking, and the health behavior of continued tobacco use, residual anger for the caregiver was expressed. This dissidence supports Andersen’s suggestion that measurements of the family as a unit to determine health services use are complicated by the heterogeneity among family members for factors such as beliefs.17 Andersen suggests that enabling factors, such as prior experience with health services, and social networks will predict health service use.17 As such, prior positive and negative experiences
with the health care system could impact EOL decision making among blacks. Participants from this study indicated the lack of information, misunderstanding of health system practices, and general animosity toward health care workers had an impact on their EOL decisions for loved ones. Exploring past experiences with EOL decision making could alleviate distrust between health care providers and family decision makers. The literature has indicated that communication between practitioners, patients, and family members at the EOL has been less than optimal.23-27 Participants in this study confirmed that patients and family members are not working with the same information that health providers possess when the 2 groups are discussing EOL decisions. As such they are not equal partners in patient-centered care at the EOL, and it should therefore not be surprising that the 2 groups come to different conclusions about treatment. Even when family members are provided information, they may not understand the meaning behind the information.27 Participants in this study indicated that once enacted, health decisions will be followed through. It is understandable that they will need all the information and the time to process the information to make an informed decision. Participants in this study indicated they misinterpreted life support as certain recovery, not a life-prolonging option at EOL. A persistence to continue care, even aggressive care, by black family members may result from a sense of duty based on long-standing relationships as indicated earlier or a misinterpretation of treatment outcomes. Kuczewski suggested that not really knowing or understanding others has led to false assumptions and accusations of irrationality by clinicians, and that EOL decisions may be based upon a legacy of mistrust.23 Findings from this study begin to close the gap, identified by Kuczewski, between clinicians, and patients and their families at the EOL.23 If EOL care is to improve, the animosity toward health care and social service providers expressed by participants needs to be resolved. As shared by participants in this study, within the black community, word of mouth is how they find out about available health services. Perceptions that information about loved ones’ conditions and available community services has been purposely withheld may spread throughout the black community and perpetuates the animosity toward health care providers. Andersen includes community services as a contextual enabling factor that influences health services use and was verified by participants in this study. Decision makers in this study indicated a lack of community services as a main factor in the decision to move a loved one from the home of one family member to that of another to access more complete services. Limitations of the study include the inability to generalize the findings to the larger population and the inability to make comparisons to other populations. Participant recruitment from worship sites may be seen as a limitation, but invitations were not limited to only members of the faith community. People were drawn from the neighborhoods surrounding the worship sites. The qualitative design of this study did result in data rich in the lived experience among blacks of caregiving and decision making for loved ones at the EOL. The resulting themes can guide future areas for research. Implications for these
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462 findings for new approaches that health care providers can take with this population should be considered in general care as well as hospice and palliative care situations.
was funded by a grant from the University of South Florida’s New Researcher Grant.
References
Conclusions This study directly addresses gaps in the literature and research implications for caregiving and decision making among blacks at the end of their loved one’s life.8
Implications for Practice The process of advanced care planning is multiphase and requires a partnership between patients, their decision makers, health care providers, and social workers.27 Briggs and Colvin suggest that the nurse’s role in the advanced care planning process involves more than inquiring about advanced directives at the time of admission.25 Findings from this study confirm that among blacks, advanced care planning is not the isolated act of patients but accomplished in relationship with family members. In general, health care providers were not viewed as partners in this process. Health care providers need to focus on becoming a part of the advanced care planning process among blacks and to evaluate information sharing and health education among all patients and families to ensure informed decision making, particularly at EOL. Clinicians need to evaluate the health literacy of both patients and decision makers. Participants in this study shared that they misunderstood the meaning of someone being placed on life support. Melhado and Bushy suggest that low health literacy among African Americans may contribute to a mistrust of the health care system and with it disparity in EOL care.28
Implications for Research Future research is warranted using prospective studies on the EOL decision-making process among blacks. These studies should test interventions that have the potential to improve the advanced care planning process. Outcomes of the intervention studies should include decision congruence between the patient and family members, and patient and decision maker understanding of the disease progression and accompanying treatment options. Similarly, Wicher and Meeker found that there was a need for prospective studies on attitudes and preferences, and EOL decisions made.24 Additional studies testing relationships within the Andersen’s model should include family member decisionmaking roles, beliefs, and values.16-18 Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study
1. Minin˜o AM. Death in the United States, 2011. NCHS data brief, no 115. Hyattsville, MD: National Center for Health Statistics; 2011. 2. Office of Minority Health. African American Profile. US Department of Health and Human Services Office of Minority Health. https://minorityhealth.hhs.gov/templates/browse.aspx?lvl¼2& lvlID¼51. Accessed November 12, 2013. 3. US Department of Commerce. The 2012 Statistical Abstract. The United States Census Bureau. http://www.census.gov/com pendia/statab/cats/births_deaths_marriages_divorces/deaths.html. Accessed November 12, 2013. 4. Johnson R, Newby K, Granger C, et al. Differences in level of care at the end of life according to race. Am J Crit Care. 2010; 19(4):335-344. doi:10.4037/ajcc201061. 5. Mazanec P, Daly B, Townsend A. Hospice utilization and end-oflife care decision making of African Americans. Am J Hosp Palliat Med. 2010;27(8):560-566. doi:10.11/77/1049909110372087. 6. National Hospice and Palliative Care Organization. NHPCO facts and figures on hospice care; 2012. http://www.nhpco.org/sites/ default/files/public/Statistics_Research/2012_Facts_Figures.pdf. Accessed November 12, 2013. 7. Waters CM. Understanding and supporting African Americans’ perspectives of end-of-life care planning and decision making. Qual Health Res. 2001;11(3):385-390. doi:10.1177/10497320 1129119172. 8. The National Institutes of Health the National Institute of Nursing Research. Building momentum: the science of end-of-life and palliative care. A review of research trends and funding, 1997-2010; 2013. 9. Owen K, Goode K, Haley W. End of life and reactions to death in African American and White family caregivers of relatives with Alzheimer’s disease. Omega (Westport). 2001;43(4):349-361. 10. Hopp F, Duffy S. Racial variations in end-of-life. J Am Geriatr Soc. 2000;48(6):658-663. 11. Barrett RK. Dialogues in diversity: an invited series of papers, advance directives, DNRs and end-of-life care for African Americans. Omega. 2005-2006;52(3):249-261. 12. Black BS, Fogarty LA, Phillips H, et al. Surrogate decision makers’ understanding of dementia patients’ prior wishes for end-of-life care. J Aging Health. 2009;21(4):627-650. 13. Song M, Ward SE, Lin F. End-of-life decision-making confidence in surrogates of African-American dialysis patients is overly optimistic. J Palliat Med. 2012;15(4):412-417. 14. Campbell C, Williams I, Orr T. Factors that impact end-of-life decision making in African Americans with advanced cancer. J Hosp Palliat Nurs. 2010;12(4):214-224. 15. Chen H, Haley WE, Robinson BE, Schonwetter RS. Decisions for hospice care in patients with advanced cancer. J Am Geriatr Soc. 2003;51(6):789-797. 16. Andersen R. National health surveys and the behavioral model of health services use. Med Care. 2008;46(7):647-653.
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17. Andersen R. Revisiting the Behavioral model and access to medical care: does it matter. J Health Soc Behav. 1995;36(1): 1-10. 18. Andersen R. Societal and individual determinants of medical care utilization in the united states. Milbank Mem Fund Q Health Soc. 1973;51(1):95-124. 19. Krueger R. Focus Groups: A Practical Guide for Applied Research. Newbury Park, CA: Sage Publication, Inc.; 1988. 20. Halcomb EJ, Gholizadeh L, DiGiocomo M, Phillips J, Davidson PM. Literature review: considerations in undertaking focus group research with culturally and linguistically diverse groups. J Clin Nurs. 2007;16(6):1000-1011. doi:10.1111/j.1365-2702. 2006.01760.x. 21. Welch LC, Teno JM, Mor V. End of life care in black and white: race matters for medical care of dying patients and their families. J Am Geriatr Soc. 2005;53(7):1145-1153. 22. Schmid B, Allen RS, Haley P, DeCoster J. Family matters: dyadic agreement in end-of-life medical decision making. Gerontologist. 2010;50(2):226-237.
23. Kuczewski M. Our cultures, our selves: toward an honest dialogue on race and end-of-life decisions. Am J Bioeth. 2006;6(5):13-17. doi:10.1080/15265160600857189. 24. Wicher C, Meeker M. What influences African American end-oflife preferences? J Health Care Poor Underserved. 2012;23(1): 28-58. doi:10.1353/hpu.2012.0027. 25. Briggs L, Colvin E. The nurse’s role in end-of-life decision-making for patients and families. Geriatr Nurs. 2002;23(6):302-310. 26. Lokker M, Veerbeek L, van der Heide A. Awareness of dying: it needs words. Support Care Cancer. 2012;20(6):1227-1233. doi:10.1007/s00520-011-1208-7. 27. Allen R, Allen J, Hilgeman M, DeCoster J. End-of-life decisionmaking, decisional conflict, and enhanced information: race effects. J Am Geriatr Soc. 2008;56(10):1904-1909. doi:10.1111/ j.1532-5415.2008.01929.x. 28. Melhado L, Bushy A. Exploring uncertainty in advance care planning in African Americans: does low health literacy influence decision making preference at the end-of-life. Am J Hosp Palliat Med. 2011;28(7):495-500. doi:10.1177/1049909110398005.
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Decisions and Caregiving: End of Life Among Blacks From the Perspective of Informal Caregivers and Decision Makers
American Journal of Hospice & Palliative Medicine® 2015, Vol. 32(4) 454-463 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114529013 ajhpm.sagepub.com
Norma E. Conner, PhD, RN1, and Susan K. Chase, EdD, RN, FNP-BC1
Abstract This focus group study describes end-of-life caregiving and decision making among blacks from the perspective of the informal caregivers and decision makers. The Behavioral Model of Health Services Use framed the study. Five focus groups with a total of 53 informal caregivers/decision makers were conducted. A qualitative phenomenological approach was used for the data analysis. Findings are presented under the themes of end of life caregiving and decision making roles, dynamics and process, and beliefs and values. The common thread of care giving and decision-making within relationship and six subthemes were identified. Findings also suggest the need for support and inclusion of designated informal caregivers and decisionmakers in the advance care planning process early in the disease trajectory. Keywords end of life, decision making, caregiving, blacks, focus groups, qualitative
Introduction Black men and women have a higher death rate in comparison to their same gender, white and Hispanic cohorts.1 Blacks differ greatly from whites in their patterns of morbidity and mortality.2,3 Just as for whites, heart disease, malignant neoplasms, and cerebrovascular disease remain the top 3 causes of death for blacks; however, blacks die at a younger age of these diseases.3 Beyond the top 3 main causes of death, blacks vary widely from whites in the remaining top 20 causes of death, with diabetes mellitus, nephritis, and human immunodeficiency virus/AIDS ranking higher among blacks than whites.3 Blacks differ from whites in their treatment preferences at the end of life (EOL). In comparison to whites, blacks are more likely to choose a full code (P < .001) and less likely to accept a ‘‘do not resuscitate’’ status or discontinue life support (P ¼ .03 and P ¼ .005), respectively.4 Blacks are also more likely to continue with chemotherapy even in the face of medical futility.5 In addition to making selections that prolong life, blacks do not select services that could provide supportive care at the EOL such as hospice, only comprising 8.5% of hospice patients in 2011.6 Blacks also do not readily complete advance directives citing conflict with religious beliefs, the health system reflecting the negative behaviors of society creating distrust, and that a trusted loved one is the preferred EOL decision maker rather than a formalized document.7 A recent report by the National Institute of Nursing Research identified the need for future studies on caregiver psychosocial needs, stressors, caregiver characteristics,
including racial and ethnic characteristics, that may impact end-of-life (EOL) care needs, and service use preferences.8 Furthermore, research is needed that clarifies the diversity of beliefs and values influencing preferences for EOL and palliative care and the behavioral mechanisms that play a role in advance care planning.8 This study identified some psychosocial processes and beliefs and values of caregivers in EOL decision making.
Background A review of the literature specific to EOL health decision making and caregiving among blacks revealed studies on (1) caregiver actions, (2) preferences and decisions for loved ones with cognitive impairment, (3) satisfaction with their loved ones’ care, and (4) congruence between patients and their surrogates on EOL decisions. African Americans caring for those with Alzheimer disease were more likely to care for their loved ones at home until death and did not view the death of the loved one as a relief, rather as a loss.9 The dementia of a loved one was more acceptable to African American 1
University of Central Florida, College of Nursing, Orlando, FL, USA
Corresponding Author: Norma E. Conner, PhD, RN, University of Central Florida, College of Nursing, 12201 Research Parkway Suite 300, Orlando, FL 32826, USA. Email: [email protected]
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caregivers and did not seem to influence surrogates to choose less aggressive treatments as compared with whites.10 African American decedents compared to whites were less satisfied with the care received by their loved ones and with the communication with health care providers.11 In studies of patient and surrogate decision maker congruence in EOL decisions and preferences, results are mixed. Some studies reported confidence by surrogates to carry out their loved ones’ EOL wishes. In reality, this confidence was unsubstantiated, as they could only indicate (1) general patient preferences, (2) preferences reflective of the surrogate’s beliefs, and (3) a disposition for lower levels of treatment as compared with the patient.12-14 This was particularly true when patients did not formally articulate their specific EOL preferences.12-14 Studies have also shown that the patient’s family and physician play a role in EOL decision making.15 Yet, this process is only partially understood, as most of these studies have been from a patient’s perspective.15 Prior studies suggested the need for research from the perspective of the caregivers and decision makers about their roles and relationships with the dying individuals with whom they were involved, their own beliefs and values pertaining to EOL, and the decisionmaking process itself.10,11,14,15 Understanding how those decisions are made and examination of the role of the caregivers and decision makers may add valuable insight for health professionals working to alleviate health disparities. Andersen’s Behavioral Model of Health Services Use (2008) supports the influence of multiple determinants, including beliefs and family factors on health services use including EOL care.16-18 The model depicts contextual factors of the community and individual factors as impacting health behaviors and eventual health outcomes.16 Both the contextual and the individual determinants consist of predisposing, enabling, and needs factors. The contextual and individual predisposing factors are considered to be demographics, social structure factors such as education and ethnicity, and beliefs and values.16 The enabling factors at the contextual level include health policy, financing, and organization and at the individual level include financing and organization measured by insurance status, income, and regular source of care.16 The needs factors at the contextual level are represented by environmental factors and population indices and at the individual level as perceived (patient’s perspective) and evaluated (professionally assessed) need.16 Taken together these 3 factors influence health behaviors (personal health practices, health service use, and process of medical care), which then impacts health outcomes (perceived and evaluated health and consumer satisfaction).16 The Behavioral Model of Health Services Use provided the theoretical framework for this study. Informal caregivers and decision makers articulated contextual and individual predisposing and enabling factors that impacted health behaviors and health outcomes. Needs factors were identified, however, only from the caregiver/decision maker’s perspective. The purpose of this study was to describe (1) various informal support relationships and the caregiving and decision-making
roles therein, (2) dynamics of the caregiving/decision-making process, and (3) beliefs and values about EOL care, among blacks who have experienced caregiving or health decision making for a seriously ill loved one. The research questions were
What are the various informal caregiving/decisionmaking roles among blacks pertaining to EOL care? What are the dynamics of the caregiving/decisionmaking process among blacks? What are the beliefs and values about EOL care among black informal caregivers/health decision makers?
Methods Study data were collected using a focus group methodology. A total of five 90-minute focus groups were held in 2 counties in southwest Florida. Participants were recruited from black religious congregations. The principal investigator (PI) contacted the formal church leadership to gain permission to recruit participants from the congregation and was then put in touch with an intermediary at each congregation. These intermediaries were aware of congregation members and some surrounding community members who had experienced the role of informal caregiver or decision maker for a dying loved one. Additionally, the intermediary served as the liaison between the PI and those invited to participate in the study. Institutional review board approval was obtained for the study. Each focus group session took place in a meeting room of the worship facility. Those agreeing to participate met once for the focus group interview. There was no follow-up with participants. Refreshments were provided during the session. Participants were seated around tables facing one another. The study purpose and procedures were explained, and each participant signed an informed consent. Once agreeing to participate in the study, participants received a US$20.00 honorarium to offset any costs they may have incurred to participate in the study. Each participant completed a demographic data sheet. The PI used a pilot-tested interview guide to facilitate the discussions. Each session was audiotape recorded. The tape recordings of each session were transcribed verbatim by a transcriptionist. A research assistant was present to help facilitate each session and to assist with participants who became upset discussing their experiences with a loved one who may have already died. There was a debriefing time at the end of each session for those that wanted to discuss their experience. Participants were also given a sheet of community resources for follow-up counseling or bereavement services if they wanted to avail themselves of those services.
Data Analysis Data analysis consisted of a qualitative phenomenological approach with the intention of uncovering the unique perspectives and meanings of EOL caregiving and decision making
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456 Table 1. Codes Related to Themes of Decisions and Costs.
Table 2. Caregiver Characteristics.
Codes related to decisions
Codes related to costs
Variable
Need to decide living will Decision making by daughters with mother comatose Decision for nursing home Needing to work the group Getting all in agreement Patient controlling the process
Duty not really universal Being stuck
Age, years 65.79 (13.58) 28-88 Years of 13.57 (4.26) education Marital status Single Married Divorced Widowed Partnership Religion Roman Catholic Protestant None Missing Advance directives No Yes Other Missing Expecting to be a caregiver No Yes Other Living with the person you expect to care for No Yes Other
Left home to be with her Rotated care nightly The cost of duty Wife quit job to care for mother Amputation decision Took care of both mother and mother-in-law Patient refused hospice and demanded Went to nursing home daily sister stay home to care for her to be sure she was OK Distrust of system
among caregivers of family members or loved ones near EOL. Separate transcripts were created for each focus group. Each transcript was coded for themes independently by the 2 authors. In order to allow for the most open interpretation, no a priori set of codes was used. Codes from each transcript were compared, and small categories of codes were collected under larger themes. For example, from focus group 2 ‘‘making decision/need permission’’ was similar to a code from focus group 1 ‘‘plan for how to decide.’’ The theme of decisions was often related in the text with codes related to personal losses such as ‘‘the cost of duty’’ and ‘‘being stuck.’’ A representative list of codes related to ‘‘decisions’’ and ‘‘costs’’ is presented in Table 1. Each step of data analysis closely followed the systematic and verifiable methods of data analysis for focus groups outlined in the literature.19,20 The themes derived from the coding process were organized by the foci of the research questions: (1) caregiving/decisionmaking roles; (2) dynamics of caregiving/decision making; and (3) beliefs and values about EOL care. In some cases, themes overlapped the focus areas.
Results A total of 53 informal caregivers/decision makers, 7 black men and 46 black women participated in the study. The mean age of the caregivers/decision makers was 63 years, and the range was 28 to 88 years of age; and the mean years of education were 13.57 years. The plurality of participants was married (n ¼ 24, 46.2%), was Protestant (n ¼ 28, 88.5%), expect to be a caregiver again (n ¼ 42, 80.8%), and of those they intend to care for (n ¼ 29, 55.8%) and had not completed an advance directive (Table 2).
Caregiver/Decision-Making Roles Caregiver roles for the participants in this study revealed a complex range of associations, activities, and commitments. There was a great deal of variation among the participants with regard to the relationship between the caregiver/decision maker and the dying loved one. Participants cared for/made
Mean (SD)
Range
Frequency
Percent
5 24 4 18 1
9.6 46.2 7.7 34.6 1.9
2 46 1 3
3.8 88.5 1.9 5.8
29 21 1 1
55.8 40.4 1.9 1.9
8 42 2
15.4 80.8 3.8
25 19 6
48.1 36.5 11.5
Abbreviation: SD, standard deviation.
decisions for their spouses, parents, grandparents, great grandparents, parents-in-law, siblings, aunts, uncles, friends, and neighbors. The time they spent in the role of caregiver/decision maker ranged from 2 to 28 years. The conditions of their dying loved ones included Alzheimer disease, cancer, kidney failure, diabetes, stroke, and cardiac disease. Roles of the caregivers and decision makers were most often task defined and included physical care (ie, bathing, personal care, changing catheters, and feeding), financial/paperwork management, and general care management (coordination of services/providers or advocating for the patient). Decisions made by the study participants included consent for amputations, nursing home placement, beginning and ending life-sustaining treatments, having surgery, resuscitation, funeral arrangements, and placement of children orphaned by the death of a parent. Data analysis revealed that the overarching theme of caregiving and decision making within relationship dominated this experience. The relationship was the basis of the caregiving experience and provided context and reason for the commitment required to face both the decisions that were demanded and the actions that then followed. Several subthemes emerged within this overarching theme including (1) preordained role assignment, (2) roles challenged societal norms, (3) honoring promises, (4) depth of feelings, (5) valued relationships versus personal costs, and (6) beliefs and the healthcare system.
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Preordained role assignment. In many cases, participants stated that the decision-making role they played at the end of their loved one’s life was simply a continuation of an ongoing decision-making role they previously held within their family. Others found themselves in uncharted waters when they became the singular decision maker for their loved ones. One woman shared instances where she engaged in decision making about her family homestead: Well I’m not the oldest, but when it was a roof that needed to be put on our house, my Dad called me, and then I’d call and let everybody know, and when we put an air conditioner in our home, I chose the gas A/C.
Even in the face of many available family members, 1 person would be chosen for the decision-making role. One participant shared that she was 1 of the 13 children, and in spite of so many family members, she alone seemed designated as the family decision maker: Yeah, I was the one they came to if there was an issue. I ended up falling into the routine that when they need something done, okay, call me! But that is what it boiled down to.
Other participants echoed the same experience: There’s just the three of us. I was always the one making the decisions. So even now, my brother said, you know, you make them so well; you can be the one that makes the decisions.
And With my family, it’s a lot of them, and a lot of different personalities, and when it comes to an important decision, you can’t really rely on some of them because they’re just in the moment. So it has to be one stable person that says ‘‘This is the way it’s going to be. . . . Get with the program.’’ They come up with something like over the head idea, and I’m like, well, okay, we’re not going to do that. I think it’s because . . . I am the stable one.
Sometimes, individuals thrust into a decision-making role are unfamiliar with taking on this role alone. A participant who had to make decisions about her spouse expressed this: And you always wonder if you make the right decision since this always has been a shared decision. You always wonder, ‘‘did I do the right thing? Was this what he would want me to do?’’ You just don’t know in that case.
Roles challenged societal norms. Traditionally, women are seen as caregivers, but in this sample, women were tapped as decision makers in multiple ways, as evidenced previously. Men became physical caregivers, as one emotionally admitted about caring for his mother:
Everything that a CNA would do at the hospital, from changing the catheter to cleaning the catheter; I did everything . . . and that really hurt.
In some cases, the men in the family were kept out of the daily care of a loved one, but when advocacy for the patient was needed, the men were undeterred even to the point of using extreme force. The following scenario occurred after the family’s mother went into a diabetic coma while hospitalized: My brother drove from Fort Lauderdale, . . . and he had a shotgun. ‘‘I dare anybody to say anything to me, I want to find the so and so that did this to my mom.’’ And he’s sitting there with his gun on her bed, and said, ‘‘I dare you all to move.’’ So we refer to our brother as the A-team. We filter stuff out, and give them the good version, because both of them would tell you what he said, ‘‘I’ll go to prison, I have no problem with that. Don’t bother my sisters or my mom and dad.’’
The experiences shared here prompt an expanded understanding of the relationship between caregiver/decision maker role and gender. They also suggest that family roles are determined years prior to EOL and should be explored by nurses providing EOL care. Nurses must also develop open lines of communication with caregivers and decision makers to stave off potential incidents of violence.
Caregiving Dynamics/Decision Making Process Findings from this study indicate that caregiving and decision making are dynamic processes with great diversity, yet woven through the following themes is the concept of caregiving and decision making in relationship. Care is given, and decisions are made within the context of the past relationship with the patient and the ongoing and future relationship with the patient and other family members. Caregiving dynamics and decision-making process themes include honoring promises and depth of feelings. Honoring promises. Participants shared that in some cases advance directives were not completed, but discussions took place where the caregivers/decision makers gave their word that they would carry out the patient’s wishes. Several participants expressed their strong commitment to their dying loved one as the reason for their dedication to decision making and caregiving until their loved ones death. One woman’s mother made her 7 children promise that all decisions would be made with total consensus. Pressure was not to be used to influence the siblings to concede. It was clear that this mother understood that the siblings needed to be able to remain in relationship with one another after her death: . . . amputating my mother’s leg. I had a dream that it appeared that my mother’s leg was still there. So to me, that was a message to me, saying, ‘‘Don’t do it.’’ Well my family was saying, you know it’s the gangrene and you need to go on and . . . the doctors . . . had to get a little bit more creative to convince me. And when they
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458 did . . . what they saw, that they said was gangrene, it was something else. So for me it validated my presence. It made them go back and study some more . . . it was about six months before my mother’s leg eventually was amputated. But it made me feel more comfortable that what I felt was right.
One older gentleman shared his enduring fidelity to his wife: Sometimes I have a hard time, but through it all I try to do the best I can. . . . I cope with it, because that’s my wife, and the Bible says we should stay together until death do we part, whether we sick or whatever, and this is what I do. . . . we going to have hills and we going to have mountains . . . If it’s a mountain, we’re going to have to ask the Lord to help us go down and come up. I always carry a smile when I’m around my wife, even if I’m hurting. Because we’re all human, and once you get around a sick person . . . sometimes you get real low, and then when you come to church, and you hear the preacher preach, or you hear the Bible study, or you hear things about the Bible, it’ll show up again, so when I go home, I’m filled up, not to worry, but to rejoice . . .
Similarly, a woman discussed her commitment to her brother until his death: Well I left and went away and took care of my brother until he passed away. And when he passed I was almost ready to go myself. When I would get up and leave him, he’d say ‘‘Where’s that Ol’ Hen, she done gone?’’ . . . That’s the only thing. He wouldn’t want me to go, he wanted me to sit right there, but as far as worrying me, he would get up and go to the bathroom, . . . eat his food and ate for the last time. He pushed the plate away, and smiled, and then went away in my arms. The only thing, he didn’t want me to leave him. I was his Ol’ Hen.
In these examples, the nature of the prior relationship and the shared life perspective of the family provide a filter for the decision making and for the human responses to caring demands. The commitment to the promises made seemed as binding as any formal advanced directive. Depth of feelings. It can be expected that caregiving and decision making for individuals who are dying would elicit a range of emotions. In this study, the rawness of the expressed feelings by the participants, and decisions made based upon these feelings, was surprising. None had sought counseling or support in dealing with these emotions; rather they owned them as part of the real human experience of being caregivers and decision makers at the EOL. One man expressed fear in caring for his mother who had Alzheimer disease: So the fear involved the wandering. Someone always had to be diligent and awake at night. And you just couldn’t live that way. I would just lie across the front door, get a chair and lay across the front door, and as she’d come to the door, I’d know to wake up.
And we just couldn’t handle it anymore, I didn’t want to put her in the nursing home, but I just had no other choice.
A young woman who had taken care of 2 aunts expressed her anger at them for what she perceived to be their roles in their diseases and eventual deaths. Although her aunts had been dead for a while, her anger was still very present. And no matter how many times you try to direct them to do the right thing, with their medications and food, it was like a constant battle; trying to tell somebody to try to live, and they just didn’t choose to do it. So it was just horrible. There’s a lot of anger towards both of them.
A woman who cared for her terminally ill sister expressed her feelings of anger that she referred to as stupidity for allowing herself to be manipulated into being her sister’s exclusive caregiver, to the detriment of her own health: . . . she did not allow anybody else to do anything. She wasn’t taking any medications from anyone. . . . She kind of hand-picked you. She kind of indicated that you were the one she was going to rely on. And it does get to be to the point where I felt stupid with it. I mean, if you let it happen, it really drains you, so you gotta know that this is what you want to do. Because I mean I’m talking about losing 15 pounds.
Another participant expressed feelings of hurt and fear because her mother and an aunt had chosen to maintain their independent living arrangements rather than moving in with her: . . . nobody wants to cooperate that way. And that really hurt me, because I couldn’t make anyone come live with me. They still wanted their own personal space and independence. I am afraid that people know that she is there alone, you know, and I’m afraid they may try to go in and harm her.
By comparison, 2 different participants expressed a deep love and forgiveness for those they cared for or made decisions for. In 1 instance, this love was expressed in spite of difficulties faced in the caregiving role: The whole trick to that is being able to prepare yourself enough that in spite of how they treat you (they’ll treat you bad), but you have to treat them with respect. But in order to get their way they will treat you bad, to try to get you to stay away, but you have to get past your feelings. And my wife will tell me, I’m not going back over there, I got treated so badly. And I’d say, baby, you have to get past your feelings, and truly love them.
In the other case, the feelings of love from the caregivers rendered them ineffective in managing the care of their loved one: . . . there were signs that we didn’t recognize and her Dilantin levels dropped low . . . the nurse was coming in, and she caught this,
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and then you know she had to go to the hospital a couple of times because of it. Well, you know, we finally caught on, but then we were killing her with love.
These illustrations showed that the caregivers were aware of their feelings but did not allow their feelings to prevent them from providing the care that they felt was best for their loved ones. Despite feeling used at times, they were able to respond in love. Again, the expression of caregiving, despite at times negative emotions, was central as it was based on the relationship with the person nearing death.
Beliefs About and Values of Caregiving and Decision Making at EOL Valued relationships versus personal costs. Participants recognized the tangible costs and sacrifices they incurred to provide care and make decisions for loved ones who were dying. These losses included job loss, physical tolls (weight loss, loss of sleep, or rest), life ‘‘put on hold,’’ and time away from their nuclear family (wife and children) to provide care to dying loved ones. Yet they were reticent to label them as costs, as such an acknowledgement would show disrespect toward their dying loved ones. Some stated the costs they incurred were actually a debt paid to the loved one for previous love and caring bestowed upon them by the dying loved one. One gentleman related his experience of caring for his mother as repayment for the care she gave him when he was a child. I was faithful and I worked, when I got off work, I went to see her, stayed there until about 10 at night, and I did that weekly. Sometimes a week would go by and I would just see my wife in passing, say ‘‘Hey how are you doing?’’ You know, call her on the phone. . . . She [mother] carried me around for 9 months. I was part of her, I was in her and everything . . . She like gave up her life, there were times that there were parties, maybe she wanted to go out with her friends, and she had to take care of me. We had that little bond.
A female participant expressed a similar sentiment about caring for her mother: My Mom, she had Alzheimer’s . . . Every time I took my vacation, my vacation would be to go care for my mom . . . I didn’t mind at all . . . I loved it. She was Mom, after everything she had done for me . . . We refused to let her go to a nursing home, my sister and I. We decided between the two of us, we would do it regardless . . . I had my mother down here for three months. . . Oh yeah I worked . . . and when I went to work at 7:00, I had to have all this done, the bath, the food, she had abscesses on her one leg, and I had to give her a whirlpool bath. Well I didn’t have to, but I chose to.
Caring, costly as it might be, was the way of living out the relationship that had preceded the current demands. It was a burden from which participants did not seek to be relieved. Not
to live out the caring would have been a statement about themselves and about their relationships. Beliefs and the health care system. Participants shared their perceptions of not being given all the necessary information to make an informed choice and not being given enough time to make decisions, resulting in discomfort with the outcome. Also some shared that their loved one had experienced bad care that resulted in pain or suffering by the dying individual. There was no indication that these participants believed a partnership existed between themselves and health care providers. The health care and social service systems themselves were not described as supportive to decision makers. One woman discussed her experience in trying to get services to help her mother: At first it’s very frustrating because everywhere I went for medical assistance, the doors were closed. . . . everybody’s office was open from 9 AM to 5 PM. You didn’t have a chance to call and make contact, during the day, once you got off of work, you couldn’t do anything. . . . Trying to get assistance as far as paying bills, I’d never want anyone to have to go through HRS, this place and that place. And it’s like these people, this is their money, you know and they talk to you like you are a nobody. It was just a horrible, horrible experience.
A gentleman shared a phone call that he received, which illustrated the lack of understanding among health care providers for the need of time for making decisions. I know when my father was ill, . . . they called me like at 2:00 in the morning to ask me if my father had a living will and I didn’t know what a living will was, and my response was ‘‘He has a will to live.’’ . . . so I went down to the hospital, and just said do whatever you need to do to keep him alive. . . . I had never even thought about saying, let him expire.
This kind of missed communication can result in a lack of openness and trust between lay caregivers and professionals. It can result in health care actions being taken that might not be in the best interest of the person dying, the caregiver, or the health care system. Another woman asked why the health care team only comes to you when the situation is dire and decisions are needed quickly: They come at a sensitive time when they’re going into a coma and they come out rushing to you, ‘‘Here sign this paper.’’ Why is it that they do that at that point? Why can’t a person be given those papers at the beginning when things aren’t in a grave position? Here you are, trying to make a decision, you may be the only one at the hospital, and you’ve got to make that decision, and it may not be in agreement with everybody else.
The need for families to discuss critical decisions is not supported by crisis decision making. Similarly, 1 woman illustrated her misinterpretation of the situation, how this guided
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460 her decision making, and her perception that she was being circumvented in favor of her eldest daughter. After that I’m still not seeing what they’re seeing. I guess because I was in denial. They just started overlooking me and going to my older daughter, because I think they were a little stronger than I was with it. So I had figured, well he’s on life support, so he’ll be fine, he’ll come around. . . . but it was years later before I found out that no, life support doesn’t keep you here.
Language that makes sense to health care professionals, even if it is in common usage, cannot be assumed to be understood from the same perspective by lay caregivers. There were several instances, shared by participants, of negative opinions of those in health care and social work. One participant discussed a lack of continuity pertaining to advanced directives: And every hospital I went to, nobody communicates with nobody. ‘‘Why don’t you just fill out another one?’’ But which one is legal?
One participant connected his opinion of health care providers to the avoidance of nursing homes as a source of care: . . . whether it’s a hospital or a nursing home, you have some nurses that care, and you have some that don’t. . . . when you have individuals hollering for help and the nurses are standing right out the door and don’t go see what they need or won’t go to help I wouldn’t ask anybody to put anybody in a nursing home if you are able to do for them every day.
The impressions of the caregivers and decision makers are important because they will later share their experiences with others in the community, particularly with regard to what services are available as expressed by 1 participant: The mere fact that in the black community, the only way that individuals get that is from word of mouth. . . .
The data were rich, and the quotes here are just exemplars. There were many more expressions by participants that further supported the themes presented here. Participants offered their care to persons who were dying based on a deep commitment to the relationship that connected them. Although they knew the costs they were bearing, they were willing to continue to care. They expressed the need to have more clear communication regarding the health status of their loved one and about what treatment options meant. They were capable decision makers in many aspects of the life of the person who was dying, but they often felt disregarded by the professionals in the health care system, which diminished their participation in decision making regarding EOL.
Discussion This study directly responded to the calls for research made by authors of prior articles. These authors suggested a need for research that was naturalistic and qualitative in nature that
described the decision-making processes experienced by real families, identified the human costs of the decision making and caregiving role, and viewed EOL decision making from the perspective of the patient and family considering culture and historical legacy in order to move the knowledge forward in this area.5,7,21,22 Although it cannot be said that the experiences shared by participants in this study are exclusive to blacks, it can be said that these experiences accurately reflect EOL caregiving and decision-making roles, dynamics and processes, and beliefs and values among blacks who chose to participate.
Decision Making and Caregiving Roles This study validated the prominent role of family members in the black community in the EOL decision-making process and additionally identified places where health care providers fall short of providing appropriate support. For some participants in this study, health care decision makers had assumed the decision-making role in the family well before their family member was dying and in connection with decisions related to the functioning of the household or other nonhealth concerns. Health care providers need to determine how families make decisions early in the disease trajectory. These findings support Andersen’s suggestion that social networks and interactions as part of the predisposing factor of social structure influence health services use by individuals.17 Findings that dispelled preconceived biases of caregiving as a female role and decision making as a male role should cue health care providers to consider and offer support to males and females equally called and willing to act as both caregivers and decision makers for their loved ones.
Caregiving Dynamics/Decision-Making Process The concept within relationship was woven throughout the themes of honoring promises, and depth of feelings revealed when participants discussed their caregiving and decisionmaking processes. Previous studies using hypothetical vignettes to elicit EOL decision-making responses artificially presented the process as insular and isolated.22 In contrast, findings in this study provide the depth and breadth of impact of real caregiving and decision-making experiences. Decisions made for dying loved ones are meant to be honored even through adversity. In the poignant example of advanced care planning, a mother focused on consensus decision making among her children, rather than her own treatment preferences. This woman’s decision makers in turn also focused on the process of consensus and not the decisions to be made. This study confirmed that most dying family members did not complete advanced directives. There was, however, an expressed belief by the terminally ill person that the decision maker knows what his or her wishes are for EOL treatment and care. The reality shared by some is that the decisions they were faced with making pertained to scenarios that had not been discussed with their dying loved one
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or other family members. Therefore, they were making decisions that may not have been consistent with the wishes of their dying loved one. Andersen suggested that the family was originally the focus of the model of health services use.17 He also acknowledges beliefs and values as influential in the use of health services by individuals, and that once the measurement of these variables improves, their influence on health services use will become more evident.17 Therefore, findings from this study may allow for an expanded understanding of Andersen’s model that includes family member beliefs influencing the health services use of individuals. The depth of feelings that were revealed by the participants had important implications. First, none of the participants discussed follow-up counseling or management of their feelings, although the positive effect of religious service participation was shared. In a recent iteration of his model, Andersen includes the process of medical care, which encompasses patient counseling and the communication between health providers and patients, as important to health services use.16 Participants in this study did not report positive communication with health providers. Health care providers should evaluate the emotions of caregivers and decision makers and provide appropriate resources. Second, some care decisions were made based upon the feelings and emotions of the caregiver/decision maker. Fear of harm was a catalyst for seeking safer care alternatives such as nursing home placement for the loved one. When their loved one’s needs exceeded caregivers’ and decision makers’ ability to meet them, caregivers and decision makers expressed fear and other emotions and initiated the use of formal health services. Andersen suggests that the need variable continues to explain more of the variance in health services use than the predisposing or enabling variables in the model.17
Beliefs and Values Societal values include job and financial security, yet the blacks in this study valued their family relationships more than job or money. Caregivers in this study valued equally their relationships with their dying loved one and relationships with members of their nuclear family. There was an underlying belief that they were repaying a debt they owed to the one who was dying. The nuclear family members understood this commitment and assumed a supportive role that allowed their loved ones to carry out their caregiving roles without repercussions. In some cases, when there was a clash between the caregiver and the patient regarding health beliefs, such as beliefs about smoking, and the health behavior of continued tobacco use, residual anger for the caregiver was expressed. This dissidence supports Andersen’s suggestion that measurements of the family as a unit to determine health services use are complicated by the heterogeneity among family members for factors such as beliefs.17 Andersen suggests that enabling factors, such as prior experience with health services, and social networks will predict health service use.17 As such, prior positive and negative experiences
with the health care system could impact EOL decision making among blacks. Participants from this study indicated the lack of information, misunderstanding of health system practices, and general animosity toward health care workers had an impact on their EOL decisions for loved ones. Exploring past experiences with EOL decision making could alleviate distrust between health care providers and family decision makers. The literature has indicated that communication between practitioners, patients, and family members at the EOL has been less than optimal.23-27 Participants in this study confirmed that patients and family members are not working with the same information that health providers possess when the 2 groups are discussing EOL decisions. As such they are not equal partners in patient-centered care at the EOL, and it should therefore not be surprising that the 2 groups come to different conclusions about treatment. Even when family members are provided information, they may not understand the meaning behind the information.27 Participants in this study indicated that once enacted, health decisions will be followed through. It is understandable that they will need all the information and the time to process the information to make an informed decision. Participants in this study indicated they misinterpreted life support as certain recovery, not a life-prolonging option at EOL. A persistence to continue care, even aggressive care, by black family members may result from a sense of duty based on long-standing relationships as indicated earlier or a misinterpretation of treatment outcomes. Kuczewski suggested that not really knowing or understanding others has led to false assumptions and accusations of irrationality by clinicians, and that EOL decisions may be based upon a legacy of mistrust.23 Findings from this study begin to close the gap, identified by Kuczewski, between clinicians, and patients and their families at the EOL.23 If EOL care is to improve, the animosity toward health care and social service providers expressed by participants needs to be resolved. As shared by participants in this study, within the black community, word of mouth is how they find out about available health services. Perceptions that information about loved ones’ conditions and available community services has been purposely withheld may spread throughout the black community and perpetuates the animosity toward health care providers. Andersen includes community services as a contextual enabling factor that influences health services use and was verified by participants in this study. Decision makers in this study indicated a lack of community services as a main factor in the decision to move a loved one from the home of one family member to that of another to access more complete services. Limitations of the study include the inability to generalize the findings to the larger population and the inability to make comparisons to other populations. Participant recruitment from worship sites may be seen as a limitation, but invitations were not limited to only members of the faith community. People were drawn from the neighborhoods surrounding the worship sites. The qualitative design of this study did result in data rich in the lived experience among blacks of caregiving and decision making for loved ones at the EOL. The resulting themes can guide future areas for research. Implications for these
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462 findings for new approaches that health care providers can take with this population should be considered in general care as well as hospice and palliative care situations.
was funded by a grant from the University of South Florida’s New Researcher Grant.
References
Conclusions This study directly addresses gaps in the literature and research implications for caregiving and decision making among blacks at the end of their loved one’s life.8
Implications for Practice The process of advanced care planning is multiphase and requires a partnership between patients, their decision makers, health care providers, and social workers.27 Briggs and Colvin suggest that the nurse’s role in the advanced care planning process involves more than inquiring about advanced directives at the time of admission.25 Findings from this study confirm that among blacks, advanced care planning is not the isolated act of patients but accomplished in relationship with family members. In general, health care providers were not viewed as partners in this process. Health care providers need to focus on becoming a part of the advanced care planning process among blacks and to evaluate information sharing and health education among all patients and families to ensure informed decision making, particularly at EOL. Clinicians need to evaluate the health literacy of both patients and decision makers. Participants in this study shared that they misunderstood the meaning of someone being placed on life support. Melhado and Bushy suggest that low health literacy among African Americans may contribute to a mistrust of the health care system and with it disparity in EOL care.28
Implications for Research Future research is warranted using prospective studies on the EOL decision-making process among blacks. These studies should test interventions that have the potential to improve the advanced care planning process. Outcomes of the intervention studies should include decision congruence between the patient and family members, and patient and decision maker understanding of the disease progression and accompanying treatment options. Similarly, Wicher and Meeker found that there was a need for prospective studies on attitudes and preferences, and EOL decisions made.24 Additional studies testing relationships within the Andersen’s model should include family member decisionmaking roles, beliefs, and values.16-18 Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study
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