End-of-life decision making for persons with dementia: Proxies' perception of support

Abstract

Healthcare proxies need support in making end-of-life decisions for persons with dementia (PWD). This study explored perceptions of support in decision making among proxies of PWD through semi-structured interviews with 20 proxies. Thematic analysis identified three sources of support: family, doctors, and religiosity/spirituality. Family's engagement in care discussions and support for proxies' decisions were viewed helpful while disagreement or criticism, combined with lack of knowledge about PWD's condition and needs, were not. Doctors were viewed supportive when proxies felt doctors respected their opinions and PWD's wishes. Doctor-PWD rapport influenced proxies' views of medical advice from doctors. Although religiosity/spirituality provided guidance and hope, it also presented conflicts when PWD's wishes differed from proxies' beliefs. Therefore, families of PWD should be provided with assistance in reconciling or mediating family conflicts and further education about the illness trajectory as well as risks/benefits of life-sustaining treatments. Assistance should also be provided to address religious/spiritual conflicts.

Keywords

dementia healthcare proxy decision making end of life support

Introduction

There are a growing number of persons who die with Alzheimer's disease or other dementia in the United States. In 2013, Alzheimer's disease or other dementia accounted for one-third of all deaths among older adults (Alzheimer's Association, 2014). On behalf of persons with dementia (PWD) in the last year or months of life, their families are responsible for communicating PWD's written or verbal preferences as well as making important end-of-life (EOL) care decisions in consultation with healthcare providers (Givens, Kiely, Carey, & Mitchell, 2009; Mitchell et al., 2012; Silveira, Kim, & Langa, 2010). Examples of common EOL decisions that families as healthcare proxies (referred to as proxies hereafter) are asked to make for PWD include place of care, enrollment into hospice programs, and initiation or withdrawal of life-support such as cardiopulmonary resuscitation or ventilator. These EOL decisions are often high stake, value-sensitive decisions that require balancing quantity and quality of life (White, 2011). Given the complex and challenging nature of EOL decision making, it is not surprising that some proxies report experiencing stress, anxiety, and symptoms of depression and post-traumatic stress disorder as a result of their role (Abbott, Sago, Breen, Abernethy, & Tulsky, 2001; Breen, Abernethy, Abbott, & Tulsky, 2001; Butcher, Holkup, Park, & Maas, 2001; Fassier & Azoulay, 2010; Forbes, Bern-Klug, & Gessert, 2000; Swetz, Crowley, Hook, & Mueller, 2007; Wendler & Rid, 2011).

Although limited, extant research on proxy decision making for PWD suggests that proxy decisions are influenced by multiple stakeholders (Buckey & Abell, 2009; Caron, Griffith, & Arcand, 2005; Fagerlin, Ditto, Danks, Houts, & Smucker, 2001; Hirschman, Kapo, & Karlawish, 2006; Meeker & Jezewski, 2009; Swigart, Lidz, Butterworth, & Arnold, 1996). Studies have reported that proxy decision making is influenced by patient values and perceived preferences, as well as need for family consensus (Hirschman et al., 2006; Meeker & Jezewski, 2009) and relationship with healthcare providers including physicians and social workers (Black, 2007; Buckey & Abell, 2009; Swigart et al., 1996). A recent study of family caregivers of PWD, for instance, asked families to choose EOL care options for their family members if the PWD were in the end stage and found that the greater the family support and trust of physicians caregivers had, the more informed and less uncertain the caregivers were about their decisions (Kwak, Larwelle, O'Connell Valuch, & Kesler, 2016). Moreover, conflicts between the proxy and healthcare professionals that occur in decision making affect the patient care negatively by miscommunication and distrust leading to treatment decision delay (Fassier & Azoulay, 2010; Johnson, Bautista, Hong, Weissfeld, & White, 2010; Pochard et al., 2005; Wendler & Rid, 2011) and negative effect on quality of care provided by healthcare teams (Azoulay et al., 2009; Fassier & Azoulay, 2010).

According to the Ottawa Decision Support Framework (ODSF; O'Connor & Jacobsen, 2007), a broad framework applicable to many decision-making situations including medical decisions, individuals have decisional needs which directly contribute to conflicts and satisfaction in decision making. These decisional needs include knowledge, value, and support. In the context of proxy decision making, proxies need to have knowledge about risks and benefits of treatment options available to PWD. Proxies also need to have clear understanding of values considered important by PWD. Equally important is the perceived support from family and healthcare providers for proxies in decision making for the PWD. The more uncertain the proxy is in any of these three domains, the more uncertainty and decisional conflict the proxy is expected to experience.

Given the importance of the support in proxy decision making and limited research available on how proxies view and experience different sources of support in their role, our current study aimed to explore perceptions of support in decision making among healthcare proxies of PWD. We conducted in-depth interviews with 20 healthcare proxies of persons with cognitive impairment or confirmed diagnosis of Alzheimer's or other dementia who participated in a mixed-methods study about EOL decision making among proxies of PWD (Kwak et al., 2016).

Method

Design

This project was part of a larger mixed-methods study (REFERENCE BLINDED FOR REVIEW). The overall study was guided by the ODSF (O'Connor & Jacobsen, 2007). The purpose of the mixed-methods study was to examine the role of PWD, proxy, family and healthcare provider support characteristics on decisional conflicts about goals of care for PWD at EOL. The focus of the first stage of the study was to quantitatively test hypothesized relationships between determinants of decisional conflicts by conducting a telephone, online, or mail survey. A total of 141 healthcare proxies of PWD participated in the survey. The second stage of the study focused on further elaboration, illustration, and clarification of findings from the first stage of the study in in-depth, semi-structured interviews. Results reported here are from the second stage of the study. This mixed-method study received ethical approval from the BLINDED FOR REVIEW Institutional Review Board (Ethics Review approval number 11-007). All participants were adults who were competent to give informed consent.

Sample

A subset of the participants (n = 23) of the first stage of the study were recontacted between 16 and 21 months since the initial survey (mean number of months between the initial survey and follow-up interview was 18.4 with a standard deviation of 1.6 months) and invited to participate in an in-depth, semi-structured telephone or face-to-face interview (based on the participant preference). Participants were selected by purposive sampling for functional impairment level and proxy's score on the Uncertainty subscale of Decisional Conflict Scale (DCS; O'Connor, 2006). We chose these two criteria for the second phase of the study for two reasons. First, we wanted to focus on the experiences of proxies who were actively involved in decision making for PWD. Therefore, we chose proxies of PWD who needed some help with or could not perform at all at least one activity of daily living (ADL). Second, we wanted to learn about perceptions of social support from proxies who reported either high level or low level of decisional conflict which was measured by Uncertainty subscale when asked to choose EOL care options for their family members in the first phase. The Uncertainty subscale of the DCS had three items that measured the overall level of uncertainty about the treatment choice that the proxy made for the PWD in a given EOL scenario (three items, alpha = 0.91). Thus, we chose proxies who scored at least one standard deviation less (i.e. low conflict) or one standard deviation larger (i.e. high conflict) than the average uncertainty subscale score (mean of 2.45 with a standard deviation of .85) of the overall proxy sample in the first phase of the study. Out of 46 eligible proxies, we randomly selected 50% of proxies (n = 23). Of these, two could not be reached and one proxy was bereaved at the time of the second phase. Participants who completed the interview received a $20 gift card as compensation.

Data collection

Individual interviews were conducted by the Principal Investigator (PI) over the phone or at the participant's preferred location (e.g. participant's home or a coffee shop). Selected questions to explore the proxies' perception of support in proxy decision making were included in the semi-structured interview schedule. Respondents were asked, “Do you find your family to be helpful when you make decisions for your [ ]'s care?” followed by, “Do you think you will get enough support from family when you will have to make medical decisions when your [ ] is in a situation where he or she is at the end of life? Why or why not?” Respondents were also asked, “How would you describe your [ ]'s physicians?” followed by, “Do you think they are helpful when you need to make decisions for your [ ]'s care?” They were also asked, “Do you think you will get enough support from doctors when you will have to make medical decisions when your [ ] is in a situation where he or she is at the end of life? Why or why not?” In addition, respondents were asked, “What kind of support do you think healthcare professionals need to provide when you need to make these decision for your [ ] if [ ] were at the end of life?” Interview length ranged from 60 to 90 min.

Data analysis

All face-to-face and telephone interviews were audiotaped, transcribed, and verified for accuracy. Qualitative data were stored and organized with DEDOOSE, an online qualitative data analysis software program. Using an inductive approach, the PI, Co-PI, and a research assistant independently read the interview transcripts multiple times and organized participants' responses by emerging themes and patterns (Patton, 1990). The three analysts met to compare the thematic categories that evolved from each of their analysis and, through discussions, came to full consensus. Subcategories were identified when needed to represent various elements of the broader themes. This process of identifying categories and subcategories was repeated until no new category emerged. The analysts then separately coded the interview text using the agreed upon categories/subcategories. They met again to compare the coded text under each category and discussed any differences until they reached complete agreement. Strategies used for enhancing analytic rigor and trustworthiness of the findings included peer debriefing, auditing, and member checking (Creswell, 2007; Padgett, 2008).

The process of identifying themes and subthemes in this study was initially conducted separately for participants with high conflict score (i.e. who had higher level of uncertainty about their EOL care choice) and for those with low conflict score (i.e. who had lower level of uncertainty about their EOL care choice) to explore any differences in perception of support by the level of decisional conflicts. When analysts compared themes between these two groups, however, no significant difference was found in the themes and subthemes that emerged from analysis. Therefore, results of data analysis will be presented for the whole group, not separately by the conflict score.

Results

Participant background characteristics

Background characteristics of PWD and proxies are described in Table 1. At the time of the in-depth interview, PWD's mean age was 77.4 years (SD = 11.5). The majority of PWD were male (n = 13, 65%) and lived with the proxy (n = 15, 75%). Over half of PWD had Alzheimer's or dementia diagnosed (n = 11, 55%) while the rest of the PWDs (n = 9, 45%) had memory problems suspected or diagnosed. The mean number of ADLs that PWD need some or more help with was 4.9 (SD = 1.9). Proxies were on average 63.4 years old (SD = 8) and have been caring for PWD for 10.7 years (SD = 4.3). Nearly all proxies were White (n = 18, 90%), and most were female (n = 17, 85%).

Table 1.

Demographics and characteristics of PWD and proxy (N = 20).

	PWD	Proxy
Demographic characteristics
	Mean (SD)	Mean (SD)
Age	77.4 (11.5)	63.4 (8)
	n (%)	n (%)
Gender: Female	7 (35)	17 (85)
Race/ethnicity: White	13 (65)	18 (90)
Caring for spouse/partner		12 (60)
PWD and proxy living together		15 (75)
Number of years caregiving		10.7(SD = 4.3)
Diagnosis and functional status
Dementia diagnosis	11 (55)
in the past 6 months
Fell one or more times	4 (20)
Had pneumonia one or more times	0 (0)
Hospitalized one or more times	5 (25)
	Mean (SD)
Number of ADLs needing help	4.9 (1.9)

PWD: persons with dementia; ADLs: activities of daily living.

Themes

In the current study, participants discussed three major sources of support for their role as healthcare proxies: (1) family, (2) doctors, both of which were specifically asked about in the semi-structured questions, and (3) religiosity/spirituality, which emerged in their discussion of support.

Family

In their response to questions about family's support, participants recalled family members' involvement in decision making and discussed what they had found helpful versus not helpful. Themes emerging from analysis included two themes on helpful aspects of family support—(1) engage in family discussions and (2) support proxy's decision now and in the future; and a theme on an unhelpful aspect of family support—(3) disagree or criticize proxies about decisions concerning PWD's care without contributing to caregiving.

Engage in family discussions about the PWD's care. Participation in family discussion was perceived as a key supportive role of family for the proxies in making healthcare decisions concerning the PWD. When asked to talk about concerns the proxy had in deciding EOL care options for the PWD, a 61-year-old female participant, for example, stated as follows:

I know it [EOL decision making] is really hard for some people and a lot of people don't talk about things. And once I started realizing what could happen, we [family] just had to talk about it to be real clear on how things were going to go.

Similarly, a 58-year-old female participant said, “My children have been my holy grail support system” in describing her family members' close communication with her in making treatment decisions for the PWD. As shown in these examples, participants viewed family's involvement in the discussion of treatments and care for the PWD as a source of support in decision making.

Support proxies' decision now and in the future. Family's support for current and future decisions was another important source of support for the proxies. A 75-year-old female participant, for instance, described her family's support as follows:

I do not find them [family] giving their attempt [to make a decision]. I think for so many years I have had to make decisions and they have said to me, ‘We know you will make the right decision’. They are there for me, so that is rather helpful. They back me and my opinions. They do not say, ‘I think you should’. or ‘I think what you should do is this’. or ‘You should go to this doctor’.

A 69-year-old male participant expressed a concurring view toward his family's support in decision making as he described that his children view him as “the decision maker” and “trust him.” As shown in these examples, participants valued family members' support for and trust in proxies' decisions and decision-making abilities.

Participants also valued the anticipated support from their families for their proxy role in the future. For example, a 54-year-old female proxy said “it [healthcare decision for PWD] is totally one hundred percent supported. Whatever you think is right now and okay, yep, I can already see a total support across the board. And I am lucky.” Another participant, a 58-year-old female caregiver believed her son would be “supportive of whatever we [the proxy and the PWD] decide” in future discussions about the treatment plan for the PWD. A 57-year-old female caregiver shared a similar expectation about her family's future support in decision making by saying, “They [family] will support what[ever] choice [the proxy makes]. I mean, at this point everybody knows and even the kids – they have no qualms about it.” As described in these examples, family's trust in proxies' future decisions as well as past and current ones was perceived as supportive by participants, which may be an important source of support for participants faced with ongoing treatment and care decisions to make for the PWD.

Disagree about or criticize the proxy's decisions. Although participants' reflections about family's role in decision making were mostly about helpful support, disagreement or criticism from family about decisions proxies made about the PWD's care was viewed unhelpful. A 70-year-old female caregiver, for instance, talked about her daughter's disagreement about moving the PWD into a nursing home:

My older daughter does not agree with him being in a [nursing] home: she thinks I should keep him home and take care of him, but I can no longer. I am 70. It's hard for me to pick him up if he falls. I don't want to constantly wipe him, wash him and get him in the tub. He's 200 pounds. I can't lift him. But she thought I would take care of him and wanted him to stay home. So, she would disagree with any decision I would make. I never thought I'd run into family conflicts.

This participant added she felt “very hurt” since her daughter disagreed with the decision that the PWD and the participant jointly made. Another participant, a 58-year-old female caregiver, described her family as “not always been supportive but very critical of certain decisions I [the proxy] have made.” Such criticism, combined with lack of support in caregiving, made this participant “feel all alone in the world.” Similarly, another 58-year-old female caregiver talked about her family strongly in favor of prolonging life and giving opinions “whether I [the proxy] wanted it or not.” This participant did not expect her family to be supportive of her decisions and expressed her feelings toward them by saying, “Hopefully, they would not get involved [in decision-making].”

Participants, who viewed family's input unhelpful and even criticizing, felt that their family did not participate in day-to-day caregiving as participants did themselves and, consequently family members did not have a clear understanding of the severity of the PWD's condition nor the degree of caregiving responsibility proxies had. This view was well represented in a 49-year-old female caregiver's comment:

They [family] don't really know day-to-day what I'm doing or how difficult it is. [A] couple of them still think my [PWD] is fine because he talks to them about their life growing up because that's all he remembers…but they don't see that [PWD's decline].

Another example of discontent in lack of family support was found in a 61-year-old female caregiver's statement:

I would ask for help. I would try and get them [step-children] involved. I just…I just wanted them to be interested, you know, in doing any heavy work. And I just didn't seem to get their attention and I would send out emails [to them] whenever I would take him to the doctor and whatever was new. I got very little response and as the years went on I sort of gave up on them.

In sum, while family's involvement in discussions and their support for the proxy's decision were viewed as helpful support, participants found it unhelpful when they received disagreement or criticism, particularly from those who had not shared caregiving responsibilities.

Doctors

Another main source of support discussed by participants was doctors who provided care to the PWD. Three themes regarding support from doctors included (1) respect for proxy's opinion, (2) respect for PWD's wishes, and (3) treatment recommendations based on respect for and rapport with PWD and proxy.

Respect for proxy's opinion. Participants perceived doctors being helpful when they felt their opinions about PWD's condition and treatment options were heard and valued by doctors. A 75-year-old female participant, for instance, talked about the doctor's close attention to her input in examining the PWD and added, “You know it's good to have somebody that's taking your opinion.” On the contrary, a 61-year-old female participant expressed her disappointment with doctors not taking his/her opinions into treatment consideration as shown in the following statement:

None of his doctors know[s] anything about his condition […] Where I have gotten all of my help from is from the people out at [previous provider] who discovered the illness. I got in touch with them and they have guided us all along and told us what medications the doctors here can prescribe for him and if I have questions I ask them. I read all of the research and I inform his doctors because [PWD]'s doctors don't have any other patients with this illness and honestly they don't seem very interested. I have asked them to do research and maybe be creative in ways that we could improve the situation and they just…they really don't.

These participants wanted to provide doctors with their understanding of the PWD's condition and treatments. Having their opinions heard and respected by doctors was important to these participants in feeling supported by them.

Respect for PWD's EOL wishes. In their discussion of support from doctors, participants expressed their disappointment with healthcare providers who do not respect the PWD's EOL care choices. For example, a 54-year-old female participant shared her views toward the doctor's treatment recommendations as follows:

I think that they [doctors] try to push it, from their own perspective, like they don't want anybody to die on their watch. That sounds awful, but I feel that way. […] Because there was so much pressure, ‘she needs a feeding tube, she needs this central line, she needs all this medication’, and I really felt that I wasn't just … she needs … you can't do this to her.

This participant was well aware of the PWD's decision not to prolong her life through conversations with her as well as her advance directives; however, when the PWD had stroke, the participant, as a proxy, “felt pressured” by the doctors to “give permission” for the use of life-sustaining treatments. The participant added that the PWD was “angry” with her “allowing them [doctors] to do those things [life-sustaining treatments]” to her. A similar frustration with doctors was also shared by a 57-year-old female participant, whose PWD got transported by 911 from nursing home to hospital even though “it was against her advance directives.” A 60-year-old male participant expressed a concurring sentiment toward a doctor recommending an aggressive surgical measure, saying:

She [PWD] could not be weaned off the vent[ilator] for more than 5 minutes at a time. So I thought OK, if we fix one problem is it going to make the other problems go away? […] They [doctors] were not fixing her problem, they were not fixing her life.

These participants felt their PWDs' EOL care wishes were not respected by doctors when they recommended life-sustaining measures against the wishes. Such discrepancy between doctors' treatment recommendations and the PWD's wishes presented a challenge to the participants' roles as proxies and made them feel not supported by doctors.

Treatment recommendations based on rapport with PWD and proxy. Participants found doctors' treatment recommendations helpful when these recommendations were based on a good rapport between the PWD and the doctor. For example, a 49-year-old female caregiver described her trust in the doctor's opinion as follows:

I think the doctor has seen where my father's thoughts are consistent and where they are not. So, I feel like they have a really good relationship. So between what my father has always said and what my doctor and I discuss, I feel pretty confident that I have the full knowledge [about the PWD's condition and treatment]…Not recommendations from a medical perspective but from knowing also as a person. I think that's been a benefit.

Another participant, a 75-year-old female, made a similar comment in her discussion of doctors:

They [doctors] all know him very well. And I would describe each one as being thoughtful, considerate, patient and willing to laugh and joke and have a good time with him. And he is in a jolly good mood when they are together […] So, it's always the doctors he specifically uses are all wonderful.

This participant also shared her views toward doctors who did not have a rapport with the PWD by saying, “The worst thing is to get a doctor you don't know, the hospitalist. Oh, my God, it's a nightmare. They have no understanding. No idea at all how much you're going through and they don't want to hear it.” Another participant, a 69-year-old female, expressed a similar perspective in her comment, “It's [a temporary doctor] here today gone tomorrow, so there's no follow-through or anything. We just kind of muddle through.” In these participants' views, doctors' knowledge about PWD based upon a personal rapport and recommendations made from such knowledge were one of the key sources of support for their role as proxies.

Religiosity/spirituality

Faced with difficult medical decisions to make for their family members, participants viewed their religious beliefs as a source of spiritual and emotional support as well as conflict. In their discussion of religiosity and spirituality as a source of support, two themes arose: (1) provide guidance on EOL decisions and (2) provide hope.

Provide guidance on EOL decisions. Even when participants were aware of the family member's EOL wishes, the role of proxy decision making still presented spiritual and emotional burdens to the participants. In dealing with such burden and distress, they relied upon their religion and/or spirituality, engaging in religious activities, such as saying prayers or consulting with their priests. For example, a 58-year-old female caregiver sought counseling with her “religious person” as well as consultation with healthcare providers and family members when she had to make a decision about a feeding tube for her mother. Similarly, in talking about her “support system,” a 69-year-old female caregiver talked about religion as a support source as follows:

I think a support system is necessary. You need someone to talk to and perhaps faith – belief in God ‘cause you can always pray to God if nobody else will listen to you. You can just say a prayer.

A 70-year-old male caregiver shared a similar view by stating, “Our belief in God is extremely strong and powerful that would help care for someone.” Likewise, religious beliefs and/or spirituality served as a source of support for these participants by providing guidance in their role as proxies.

Although religious or spiritual beliefs guided proxies throughout the illness trajectory and related healthcare decision making, participants experienced conflicts when their PWD's EOL wishes did not coincide with their own religious beliefs. For example, a 59-year-old female participant wanted to honor her PWD's wish for no life support but still opted for a feeding tube. She talked about the difficulty she felt when faced with the decision on artificial nutrition in the following statement:

I was raised [participant's protestant denomination]. I believe in God. I believe in the sake of life. But I also believe in individual circumstances so much that I cannot judge someone for making decisions regarding their own health between them and their maker. So, when I had [the PWD's] living will given to me at nine in the morning and [was] asked to make that decision [on feeding tube], it was difficult to weigh my own religious beliefs and what I felt were my [PWD]'s religious beliefs against what she indicated in her living will as to whether or not I should hold that to it.

This participant also reported she dealt with “guilty conscience from religious standpoint” in her role as the proxy. Religious beliefs were perceived by participants as the source of support providing guidelines in decision making; however, when their beliefs were not in line with what the PWD wished for, spiritual conflicts could arise and provide a psychological barrier in respecting EOL wishes expressed by the PWD.

Provide hope. Belief in afterlife held by proxies and the PWD provided a sense of hope, and, therefore, made it less stressful to make difficult decisions. A 61-year-old female participant talked about, for example, how her belief in afterlife helped with relieving the emotional difficulty with EOL decisions:

We [participant and the PWD] were not afraid of death per se. There should be a certain amount of fear but you know we have EOL expectations and after-our-death expectations and that's being with our lord…This is all part of the journey of getting to our next life…We know that we have another life or a much better life I might add. It's just easier to talk about making the right decisions about our physical death. Our spiritual [life] never really dies.

As seen in this quote, the participant's belief in afterlife provided her with comfort in making decisions about her PWD's EOL care because she believed the PWD would continue to live in afterlife. Similarly, a 61-year-old female, in describing the PWD's strong wish for a do-not-resuscitate order, shared a similar view by saying, “She [PWD] has strong faith and she doesn't cling to this life…she's not afraid of death.” Participants' beliefs in afterlife, therefore, served as a source of spiritual and emotional support when they were faced with difficult decisions to make regarding EOL care for their frail family members, providing them a sense of hope that the decisions are about physical health/life only, not the spiritual one.

Discussion

This qualitative study using individual interview data explored how healthcare proxies of PWD perceived sources of support in making EOL care decisions on behalf of their family members. Themes that emerged from the qualitative analysis of the interview data center on support from other family members, doctors, and religion/spirituality in their proxy decision maker roles.

Not surprisingly, participants viewed the involvement and support from family as both helpful and unhelpful. Family support was viewed most helpful when family members participated in treatment discussion and decision making and family members supported the proxy's decision. However, family input in decision making was not appreciated when the proxy felt criticism or disagreement from family members. The proxy's negative view toward family's input in decision making may be understood within the context of lack of involvement by other family members in patient care. When the disagreement came from family members who had not been active in caregiving, the proxy did not value their input because the proxy believed that other family members lacked knowledge about the patient' deteriorating condition or experience in caregiving to make good judgment about care. These findings from our current study are consistent with findings from prior research. Family involvement in care, which can vary from none to extensive, has been reported as one of the factors that lead to family conflict at the EOL (Boelk & Kramer, 2012). Lack of involvement in care, combined with other contextual and contributing factors, may result in restricted or delayed care planning, patient wishes jeopardized, increased patient and family distress, or diminished support for the patient and/or caregiver (Boelk & Kramer, 2012). Family members' asserting control over decision making has also been reported to contribute to the family conflict at the EOL (Kramer, Boelk, & Auer, 2006).

Another main source of support discussed was doctors. Participants expressed that doctors' existing rapport with PWD influenced how doctors' medical advice was viewed by proxies. Doctors who had known the PWD as a whole person, not just as a patient with a diagnosis, were viewed as helpful when they offered advice to the proxy because participants perceived the doctor's advice coming from personal knowledge of the patient as trustworthy. On the contrary, medical advice without any previous knowledge or rapport with the PWD was often viewed negatively. Therefore, one may argue that the doctor's knowledge of the patient based upon rapport is essential in cultivating the proxy's trust in the doctor's advice for treatment decision making.

It was also important for participants to have their opinions heard and respected by doctors. Participants in this study not only served as a healthcare proxy but also provided care to the PWD. Therefore, they had a close understanding of the PWD's health status and had at times searched for knowledge about treatments by themselves. Participants felt supported by doctors when doctors paid attention to what they had to say about the patient's condition and treatments. On the other hand, participants expressed disappointment when they felt their input was not noted by doctors. Participants also expressed discontent with doctors' not respecting the PWD's treatment preferences. Even when the PWD expressed his or her wishes against the use of aggressive, life-sustaining measures in advance directives, proxies felt some healthcare providers forced such measures on the patient. Past studies have documented cases in which advance directives were not followed in actual EOL care situations (Goodman, Tarnoff, & Slotman, 1998; Levi & Green, 2010; Marchand & Fowler, 2006; Teno et al., 1997). Disrespect for treatment preferences expressed by the patient and/or proxy may result in distrust in doctors and, therefore, may be detrimental to the way proxies view them as a source of support.

Another source of support discussed by participants was religiosity/spirituality. Proxies turned to prayers or pastoral counseling as a source of strength while going through challenges presented by proxy decision making. They sought guidance from their religious beliefs in making difficult healthcare decisions for the patient. Belief in afterlife was a source of comfort for some participants, making it less difficult to make EOL care decisions for PWD because of their belief and hope for the spiritual life that will continue beyond the physical life. Such perspective may decrease the proxy's sense of guilt or hesitance to forego life-sustaining treatments for the PWD, assuring the proxy that the impact of such decision is only limited to the patient's physical body, not to his or her eternal spirit. Religiosity/spirituality, however, might present conflicts in proxy decision making if the proxy's religious beliefs are not consistent with the PWD's EOL care preferences. In case the proxy holds a strong religious perspective that upholds sanctity of life and views pain and suffering as God's test of one's faith, withdrawal from aggressive treatments and use of palliative measures may be seen as giving up or failing to show one's conviction (Winston, Leshner, Kramer, & Allen, 2004). Even if the proxy chooses treatment options that comply with his or her own religious beliefs, however, the proxy could still suffer from the sense of guilt if the treatments chosen are not what the PWD would have wanted.

Study limitations and future research implications

This study addressed a critical aspect of proxy decision making—sources of support for proxies—and provides future research and practice implications. However, some limitations of this study still exist. This study used the purposive sampling method, therefore reporting the perspectives of only those who voluntarily participated in the study. Their views about sources of support may have been different from others who decided not to participate in the study. The cross-sectional design with a small sample of PWD proxies who were predominantly White also limits the generalizability of these findings. However, as a qualitative study, results are not presumed to be generalizable but add important value in what they might teach us about the particular phenomenon under investigation (Creswell, 2007). Nonetheless, future studies are needed to systematically examine how the relationships between characteristics of PWDs, proxies, family, and physicians influence the actual EOL decision-making process and outcomes among diverse groups of PWDs and their proxies. A special attention should be paid to the quality of communications between proxies and physicians as well as proxies and other family members, as it pertains to proxies' perception of support sources. A mixed-method study can be designed to quantitatively measure proxies' level of satisfaction with their communications with families and physicians and to qualitatively explore their communication needs in decision-making process. Systematic quantitative investigations, which include following a larger sample of PWD-proxy dyads prospectively, would likely yield additional insights regarding various sources of support for proxies in making important EOL decisions on behalf of PWDs and how such resources facilitate or hinder the proxy's efforts to make informed decisions consistent with wishes of PWD. Finally, future studies should have a closer look at the role of religiosity and spirituality in proxy decision making to find strategies to address challenges and support they may present in making difficult choices.

Practice implications

Prior research suggests that proxy decision making is influenced by multiple stakeholders and factors including patient values and perceived preferences, as well as need for family consensus (Hirschman et al., 2006; Meeker & Jezewski, 2009) and relationship with healthcare providers including physicians and social workers (Black, 2007; Buckey & Abell, 2009; Swigart et al., 1996). Past studies also reported the importance of family support and trust of physicians on decisional conflict in proxy decision making (Kwak et al., 2016) and conflicts between the proxy and healthcare professionals in decision making affecting the patient care negatively (Fassier & Azoulay, 2010; Johnson et al., 2010; Pochard et al., 2005; Wendler & Rid, 2011). Findings from this study provide important insights into how healthcare professionals may help facilitate families of PWDs accessing support and resources they need and mediate any potential conflicts that may arise between proxies, other family members, and healthcare providers.

Clearly, lack of consensus or support from family members can add to proxies' stress and burden in proxy decision making. Professionals, such as social workers, may assist family members by facilitating family conferences to address sources of existing conflicts in caregiving and proxy roles and to promote family consensus and support for the proxy. In this process, the professionals can help to increase other family members' knowledge about the patient's condition and prognosis so that they have a clear understanding of the potential outcome of treatment options and the degree of caregiving needed. A study of nursing home residents at the EOL by Mitchell et al. (2009) found that the proxy's understanding of probable complications and recognition of poor prognosis among residents with advanced dementia led to lower chance of receiving burdensome intervention at EOL. Hence, such education may provide a basis for family consensus for the proxy's healthcare decisions.

Advocacy for healthcare proxies is needed in their efforts to respect the PWD's wishes, particularly when doctors' treatment recommendations do not always reflect them. When the proxy is not sure about the PWD's condition and risks/benefits of treatment options, it can be hard for them to adhere to the PWD's wishes different from doctors' recommendations. Therefore, healthcare providers need to take time to educate the proxy and families about the illness and risks and benefits of treatment choices. In order for such education to happen, the current healthcare system should be improved in such a way that doctors are encouraged to invest time in patient/family education. Documentation of the patient's EOL care choices not only in the advance directives but also in a physician's order, such as Physician Orders for Life Sustaining Treatment (POLST), can be another way to advocate the PWD and the proxy in having the treatment wishes honored by doctors. The POLST is designed for seriously ill or frail individuals to document treatments that they either want or do not want so that their wishes may be honored during a medical crisis. The POLST document must be completed in collaboration with a physician and is more easily accessible for healthcare providers than advance directives, as POLST forms are typically part of statewide electronic registries (National POLST, 2014).

Chaplains and social workers can provide consultations and counseling to assist proxies to overcome conflicts they may experience when the PWD's wishes do not correspond with the proxy's religious beliefs. Involvement of these professionals earlier in the advance care planning may offer opportunities for the patient and family members to explore their own religious/spiritual views toward illness and EOL care choices, to openly discuss and reconcile differences in their perspectives.

Finally, additional sources of support for proxies should be identified and promoted. One example of such sources may be caregiver support groups and workshops or conferences focused on dementia caregiving. They may provide a great source of psychosocial, emotional, and informational support for proxies in their caregiving and decision making. Healthcare professionals and agencies should assist facilitating the groups and workshops and disseminate information about them to proxies in the community.

Conclusion

Using in-depth interviews with 20 healthcare proxies of PWD, this study explored perceptions of support in proxy decision making. Results from thematic analysis of the data revealed the key roles played by family, doctors, and religious and spiritual beliefs in the proxy's perception of support. It should be assured that proxies of PWD have resources to address family conflicts or religious/spiritual struggles in decision making and stay informed about the PWD's condition and pros/cons about treatment options.

Footnotes

Acknowledgement

The authors would like to thank Jessica De Larwell, MSW, and Patricia Collet, MSW, for assistance with data collection and management for this project.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by John A Hartford Geriatric Social Work Faculty Scholar Program, administered by the Gerontological Society of America and Parkinson Research Institute.

Proprietary statement

None of the authors of the manuscript has any commercial or proprietary interest in any drug, device, equipment, or any item mentioned in the submitted manuscript.

Institutional review board approval

The study reported in the manuscript was reviewed and approved by the University of Wisconsin–Milwaukee Institutional Review Board (IRB approval number, 11-007).

Hyunjin Noh, Ph.D., (University of Wisconsin–Madison) is an assistant professor at the University of Alabama School of Social Work with research interests in health disparities in end-of-life care, aging and healthcare service utilization, end-of-life care decision making among minority patients and families, and qualitative methods. She received her PhD from the University of Wisconsin–Madison, where she was a graduate research assistant for projects focusing on the psychosocial needs of terminally ill elders and on cancer disparities in rural communities. Her dissertation research, funded by Robert Wood Johnson Foundation’s Population Health Dissertation Grant, examined terminally ill African American elders’ decision making to receive hospice care.

Since joining UA, she has conducted a qualitative study, funded by the University of Alabama Research Grant Committee, exploring the hospice care staff’s communications with terminally ill minority patients and their families during hospice admissions visits. She is currently conducting a pilot study, Understanding Perceptions of Advance Care Planning by Race and Health Status, that is funded by the Deep South Resource Center for Minority Aging Research Health Disparities Research Pilot Grant. Through this study, she aims to explore community-dwelling elders’ understanding of life-sustaining treatments and their educational needs for end-of-life care planning.

She is a UAB MHRC’s Health Disparities Research Training Program trainee and a Deep South Resource Center for Minority Aging Research scholar since 2013. She is also a co-convener of the Hospice, Palliative and End-of-Life Care Interest Group at the Gerontological Society of America.

Jung Kwak, Ph.D., is an associate professor in the Helen Bader School of Social Welfare at the University of Wisconsin–Milwaukee. Professor Kwak's primary research areas focus on dementia care, caregiving and end-of-life decision making. In 2010, Dr. Kwak was selected as a Hartford Geriatric Social Work Faculty Scholar. Her scholarly work has been published in journals including American Journal of Nursing, The Gerontologist, Journal of the American Geriatrics Society, Journal of Gerontology, Journal of Pain and Symptom Management, and Research on Aging.

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