Surrogates' experiences of engaging in Physician Orders for Life-Sustaining Treatment discussions for persons with advanced dementia
Surrogates' experiences of engaging in Physician Orders for Life-Sustaining Treatment discussions for persons with advanced dementia
Hyejin Kim, PhD, RN (Post-doctoral Fellow), Christine Bradway, PhD, RN (Associate Professor of Gerontological Nursing), Susan E. Hickman, PhD (Professor), & Mary Ersek, PhD, RN (Senior Scientist and Professor of Palliative Care)
Journal of the American Association of Nurse Practitioners
Background and purpose: Little is known about surrogates' experiences of engaging in Physician Orders for Life-Sustaining Treatment (POLST) discussions. This study describes family surrogates' experiences when engaging in POLST discussions with primary care providers.
Methods:Semistructured interviews were conducted with 10 family surrogates of individuals with advanced dementia who were enrolled in a Program of All-Inclusive Care for the Elderly or resided in a nursing home. Interviews were analyzed using directed content analysis based on the conceptual model of communication and surrogate decision making by Torke et al.
Conclusions: Surrogates reported that clear explanations of clinical information and the opportunity to ask questions and reiterate what they heard were helpful in making treatment decisions. Moreover, surrogates reported feeling respected and understood when providers expressed concern for them or their family member with advanced dementia and asked them about their emotional responses to decision making. Although nine surrogates reported very positive communication with providers, one surrogate expressed discomfort with the interaction and described feeling pressured to make health care decisions.
Implications for practice: With effective communication, family surrogates feel emotionally supported during communication and decision-making processes. Providers are encouraged to focus on developing expert communication skills for end-of-life care discussions.
Worldwide, 47 million individuals suffer from dementia (Alzheimer's Disease International, 2015), and for older persons in the United States, dementia is the fifth leading cause of death (Alzheimer's Association, 2017). As dementia progresses, affected individuals become incapable of making informed health care decisions; thus, surrogates (primarily family) may be called upon to participate in decision-making processes, including decisions focused on end-of-life (EOL) care.
The Physician Orders for Life-Sustaining Treatment (POLST) paradigm has been widely implemented in the United States. This is an approach to ensure and honor EOL care preferences of seriously ill or frail patients based on communication among health care providers, patients, and/or the patients' surrogates (National POLST, 2016). A POLST form addresses common EOL treatment decisions, such as cardiopulmonary resuscitation (CPR), ventilator use, hospitalization, antibiotics, and artificial nutrition and hydration. In most states, POLST forms can be completed through discussions between providers and, for incapacitated persons, their surrogates. A completed POLST form is an actionable medical order that relays choices and directs treatments across care settings (ABA Commission on Law Aging, 2015). Consequently, a high percentage of individuals receive EOL care that they and/or their surrogates have chosen and documented through a POLST form (Araw et al., 2013; Hickman et al., 2010; Hickman et al., 2011).
For incapacitated persons, EOL health care decision making requires high quality communication between surrogates and providers (Hickman, Hammes, Torke, Sudore, & Sachs, 2017; Torke, Petronio, Sachs, Helft, & Purnell, 2012). Few studies have examined the communication process during POLST discussions; however, in two studies, providers found it challenging to interpret and explain POLST treatment choices to patients or surrogates (Caprio, Rollins, & Roberts, 2012; Hickman et al., 2009) and to match patients' goals with treatment choices included on the POLST form (Caprio et al., 2012). Moreover, little is known about surrogates' experiences of engaging in POLST discussions for individuals with advanced dementia. Thus, the aim of this study was to describe surrogates' experiences related to communication with providers during POLST discussions for individuals with advanced dementia.
Design and methods
This study was guided by the conceptual model of communication and surrogate decision making by Torke et al. (2012) (Figure 1). This conceptual model proposes that the quality of health care decisions and, in turn, patient and surrogate outcomes is influenced by information processing and relationship building during surrogate–provider communication. In this study, we focused on the communication components of the model—information processing and relationship building. Table 1 presents these terms as described by Torke et al. (2012) and the ways in which we defined them for the current study.
Once study procedures were approved by the University of Pennsylvania Institutional Review Board, we conducted this study in one nursing home and two Program of All-Inclusive Care for the Elderly (PACE) programs in Southeastern Pennsylvania, from December 2015 to October 2016.
Surrogates of persons with advanced dementia were recruited as study participants. We defined surrogates as family members who were appointed in the persons' advance directives or authorized by a Pennsylvania default surrogate law. The inclusion criteria for surrogates were (a) a family member who was responsible for making health care decisions for the person with advanced dementia; (b) 21 years or older; (c) willing to participate in a face-to-face POLST discussion with a provider followed by a semistructured interview in person or by telephone; and (d) able to speak, read, and understand English. We defined advanced dementia as a documented diagnosis of dementia in the medical record as evidenced by a score of 0–7 on the Brief Interview of Mental Status (Saliba et al., 2012) or 0–10 on the Mini-Mental State Examination (Perneczky et al., 2006).
The first author initially identified providers (defined for this study as physicians or nurse practitioners) who provided primary care at the participating nursing home or PACE programs, expressed an interest in study participation, and in the course of their work, planned to conduct POLST conversations with potentially eligible surrogates. Four providers agreed to participate and provided written informed consent to permit digitally recorded POLST discussions. Along with administrative and clinical staff, participating providers also identified eligible residents or PACE enrollees who did not have a completed POLST form or had an incomplete form. The first author or research assistant sent letters to the surrogates of these residents to introduce the study and then contacted them by telephone to explain the study and answer any questions. Ten surrogates agreed to participate in the study and provided written informed consent. At the end of the interviews, surrogates received a $25 gift card for their participation.
Each surrogate completed a demographic questionnaire (e.g., age, race, education, and previous experience of discussing EOL care with a provider). They also participated in a face-to-face POLST discussion with a provider. Immediately after the POLST discussion, the first author conducted semistructured interviews with each surrogate in person, which included open-ended questions and prompts related to key constructs of the conceptual model (Torke et al., 2012). To capture key characteristics related to information processing and to identify the content of the conversation that was most salient, we asked surrogates to describe what they remembered about the conversation. We also requested that they talk about what they found most helpful, especially in terms of their understanding and to share anything that confused, concerned, or surprised them. To better understand the relationship-building process from the surrogates' perspectives, we asked participants to indicate if they felt that the provider was sensitive to their needs during the meeting and to explain the basis for their response. We also explored whether or not surrogates believed that providers understood what was important to them and their family member with dementia. Examples of interview questions are presented in Table 2. Interviews lasted approximately 20–50 minutes and were digitally recorded.
Digitally recorded interviews were transcribed verbatim. The first author compared all transcripts with the original recordings to confirm data accuracy. All personal identifiers were removed and pseudonyms were substituted to protect participants' confidentiality. Transcripts and investigator field notes taken during interviews were managed using NVivo 11 (QSR International, Burlington, MA).
Directed content analysis was used to analyze data from the interviews and field notes (Elo & Kyngas, 2008; Graneheim & Lundman, 2004; Hsieh & Shannon, 2005) and guided by the key constructs of surrogate–provider communication in the conceptual model by Torke et al. (2012): information processing and relationship building (Table 1). The first author read each transcript and accompanying field notes multiple times to obtain a general sense of the data. Then, to describe surrogates' experiences related to information processing and relationship building, the first author analyzed participants' responses to the primary interview questions and probes listed in the corresponding domains. After initial coding, the first author met with two coauthors (CB and ME) to discuss codes and findings and revised codes accordingly. All authors approved the final codes and findings.
The trustworthiness of the findings was achieved using strategies described by Lincoln and Guba (1985) and Morse (2015). In addition to ongoing review of emerging findings with all authors, intercoder reliability was further enhanced by engaging an additional, independent (nonauthor/noninvestigator) coder who was a qualitative research expert (Morse, 2015). The independent coder randomly analyzed and audited 30% of the data, and the first author and the expert discussed and reconciled all discrepancies. Throughout the analysis process, the first author also conducted peer debriefing with predoctoral and postdoctoral students by sharing, reviewing, and discussing the data, coding schemes, and initial interpretations (Abboud et al., 2017).
Study participants were 10 surrogates, consisting of 8 African American women, 1 African American man, and 1 Caucasian woman. Eight had at least some college education. All participants had previously made health care decisions for the person with advanced dementia, and seven had previous EOL discussions with providers about the patient (Table 3).
When surrogates were asked what they learned from POLST conversations, six indicated that the conversation was about “what to do if something happens” to their family member. For example, one surrogate commented, “What I remember, I guess what to do, pretty much what to do if something happens. That is what I remember. If a certain scenario situation happens, so, I remember that is pretty much it.” Another salient message was about specific treatments. Six surrogates articulated which treatments were discussed, how they understood certain life-sustaining treatments, or what decisions were or were not made. For example, one surrogate described her understanding of do not resuscitate (DNR): “I understand it as basically them just letting people die.” Another surrogate commented about decisions that she did and did not make:
I did give permission to, uh, not resuscitate [my husband], of course. And the next question was about, uh, feeding him. I would rather give it in a feeding tube in case he was become, you know, more or less unresponsive in any way. And, of course, we put that on hold because … I wanted to talk to his family [sister].
In addition, one surrogate remembered making decisions based on the mother's expressed preferences. For another surrogate, the take-home message from the POLST discussion was, “my decision is not final. I can always change it.”
Surrogates found several factors helpful in processing the clinical information. Two important features were how providers described the trajectory of dementia and life-sustaining treatments. Five surrogates appreciated providers' clear explanations about various treatment options:
What I thought about it, which was very helpful to me that [the provider], was the only person who has really been clear about the subtleties of the different things, because people say … don't break my mother's chest but that's all I remember from all of these other things. … It's not clear what it means, feeding tube, no feeding tube, hospital, no hospital, you know? And [the provider] was really the clearest. … when you do let a person go and when you intervene is a more subtle understanding of it, and I appreciated that.
One surrogate also perceived it helpful that the provider explained options for EOL care (e.g., hospice) that was beyond treatments listed in the POLST form:
Just hearing that the care that they can provide here [at the PACE center], as well as offer at home and to be able to provide hospice, if needed, and just kind of explained exactly the extent of what they could, would and will not do.
Another factor reported by three surrogates was that they were able to ask questions or reiterate what providers explained to clarify their understanding. For instance, one surrogate stated, “I think what's helpful is I was able to ask questions and give statements back, so that I can demonstrate how I'm understanding what she's saying because sometimes things get lost in translation.” Another two surrogates pointed out that using and reviewing the actual POLST form facilitated their understanding of life-sustaining treatments: “Then when I saw the paper, I would just say, ‘Oh, now I got it!’ It helped me a little more, yeah. It put a stamp on it.” An additional factor that helped a surrogate's information processing was providers' recommendations regarding treatments:
[The provider] was helpful because he'd say this is what he'd recommend. And I appreciated that because really, I don't know what the right answer [decision] is. I could say I know what my mother wants … we've talked about this sort of thing, but we didn't talk about it in medical terms and specific this and that.
No surrogate found that the information the provider shared was confusing or surprising. Instead, they commented that providers' explanations were clear. In addition, several surrogates reported that they were not surprised by anything that was said during the POLST discussion because they had already thought about and discussed EOL care with providers, staff, and other family members.
Nine surrogates described features of the providers' communication that contributed to feeling respected and understood, providing one or more examples of how providers were sensitive, listened, and understood their needs. Three surrogates made general comments that the provider was “warm” or “caring.” Others made more specific statements. For example, one participant explained: “[The provider] wanted to know how I felt about that, so that was good. She knows how I feel now, so that makes a lot of sense too. Then, I understood also now that I can depend on her.” Other surrogates felt that the provider cared because the provider expressed their concern for the surrogate or the family member. In the words of one surrogate: “[The provider] expressed that he was concerned when he learned that I'd taken him [my husband] home, you know. So, that made me very comfortable to know that he cared. And he knew what I was facing.”
Also, providers' openness to and support for surrogates' opinions and decisions helped surrogates feel understood by providers. One surrogate stated: “[The provider was] willing to you know … do whatever it is that we specifically requested, so definitely.” This surrogate also articulated,
[The provider] didn't mention his personal opinion about what he thought should or should not be done … I mean, if I ask for it, that's fine, but don't tell me what you would do if it were your mother.
This surrogate viewed it as positive that the provider did not express personal opinions about treatments.
Two surrogates appreciated that the provider had personal knowledge about the patient and the surrogate's situation; as one commented: “[The provider] knows my mom personally; she sees her on a daily basis. She kind of understands the situation that I have to deal with, that my family has to deal with.” Moreover, providers' active listening, giving surrogates the space to comment, and answering questions made surrogates feel cared for and understood by providers: “Well, it was interactive, that [the provider] could hear what I said. There was space for me to comment and [the provider] would go over something a second time.”
Case of Sophia: An example of how communication fails
In contrast to the nine surrogates who felt cared for and understood by providers, one surrogate (referred to by the pseudonym “Sophia” for clarity) talked about her feelings of uneasiness throughout the POLST conversation. We analyzed this surrogate's responses separately as an outlier case because her experiences highlighted the ways information processing and relationship building can collapse.
The surrogate did not view the provider as sensitive to her needs or understood what was important to her or her mother. First, she pointed out that the provider seemed overwhelmed and distracted: “[The provider] probably doesn't remember, but I met her several times. I know she has a lot of cases. To me the provider seemed like she was busy. Possibly even on the verge of being overwhelmed.” Sophia also felt that the provider's goal was to get the POLST form signed rather than to have a robust conversation:
I think [the provider] was really trying to get me to understand that [CPR] is not going to be a good thing for [my mother]. I think that's what she really wanted me to understand and … to sign off on the DNR today.
Consequently, the surrogate said she felt pressured to choose the DNR option:
The only thing that really concerns me is the fact I really believe they're pushing me to sign papers that say do not resuscitate. That concerns me because I'm wondering why. What also is going through my mind too, are other family members going through that? Are other family members being pushed towards doing a do not resuscitate? Is this what happens to all people in the nursing home? Does everybody sign a do not resuscitate?
In addition, she suggested that providers need to communicate in a sensitive and spiritual manner to help surrogates embrace the concepts of life-sustaining treatments better:
I think … it will be helpful for me … maybe a little bit more sensitivity in end of life period … that we all are going to go down that road. Each and every one of us. I think if it was done in a more spiritual way, perhaps the family member would be able to embrace the concept better because it's not something that's just happening to your loved one. It's something that's going to happen to you.
We interviewed family surrogate decision makers for people with advanced dementia to better understand surrogate–provider communication during POLST discussions. Surrogates reported that they understood that the POLST discussion was about “what to do if something happens” to their family member. Important provider-related factors that surrogates found helpful for processing clinical information included clearly describing options for EOL care, including hospice, inviting surrogates to ask questions and reiterate what they heard, and using and reviewing the actual POLST form with surrogates. In addition, features of providers' communication that made surrogates feel respected and understood included asking how surrogates felt about the situation and expressing their concerns for the surrogate and/or family member with dementia. Several communication features providers demonstrated in relation to information processing and relationship building overlapped.
Findings emphasized that providers' clear explanations during POLST conversations assisted surrogates to process information. The significance of providers' explanations about the patient's condition, prognosis, and EOL treatments is well supported in previous studies of surrogate decision making for individuals with dementia (Givens, Kiely, Carey, & Mitchell, 2009; Givens, Lopez, Mazor, & Mitchell, 2012; Petriwskyj et al., 2014). In addition, the POLST form itself is viewed by clinicians as an effective tool that promotes surrogates' understanding (Caprio et al., 2012; Hickman et al., 2009). As Bomba, Kemp, and Black (2012) suggested, providers need to review the form with surrogates before finalizing treatment decisions as one strategy to affirm that surrogates comprehend the meaning of each treatment option and that they choose what they prefer for their family member.
In our study, one surrogate found that providers' specific recommendations about EOL treatments were helpful, whereas another surrogate preferred that providers avoid offering their suggestions about treatments unless requested. Surrogates' conflicting views about providers' recommendations can be explained in terms of shared decision making. Previous studies presented that the role and level of participation surrogates preferred for decision making varied from having the full authority to make final decisions to delegating the authority to providers (Caron, Griffith, & Arcand, 2005b; Hickman et al., 2017). In this study, surrogates' preferences for participation in decision making might have influenced their views toward providers' recommendations about EOL treatment options. Therefore, the surrogate who expressed a negative view toward the provider's recommendations might have had a preference for full decision-making authority. Providers' attitude when offering opinions or recommendations may also affect surrogates' views about providers' recommendations. Back, Arnold, and Tulsky (2009)suggested that providers should ask for surrogates' permission before making clinical recommendations. Also, if providers make recommendations, the recommendations should be based on the surrogate's statements, such as wishes and goals of care for their family member (Back et al., 2009).
Many authors have underscored the importance of acknowledging and addressing emotions during the decision-making process (Back et al., 2009; Curtis & White, 2008). Distressing emotions, such as guilt, frustration, and sadness, often interfere with surrogates' understanding of clinical information, leading to difficulty in making treatment decisions (Wendler & Rid, 2011). In our study, communication skills that surrogates perceived as helpful and supportive were consistent with communication strategies, such as those described by Curtis and White (2008) using the VALUE mnemonic—value surrogate statements, acknowledge emotions, listen, understand the patient as a human being, and elicit questions. For example, surrogates appreciated that providers were open to surrogates' statements, were interested in knowing surrogates' feelings, listened carefully, communicated their personal knowledge about the patient, and gave surrogates opportunities to comment. Our findings support the use of the VALUE mnemonic approach by Lautrette et al. as an intervention for family conferences about EOL care in intensive care settings (Lautrette et al., 2007). Family members in the intervention group had more time to speak during the conference and longer conferences and showed fewer symptoms of posttraumatic stress disorder, anxiety, and depression after the patient's death than those in the control group (Lautrette et al., 2007).
Information processing and relationship building are not independent constructs of communication; rather, they are interconnected (Torke et al., 2012), and our findings lend further support to this bidirectional relationship. Surrogates perceived providers' explanations about clinical information as helpful not only for processing information but also for building trusting relationships. In addition, listening carefully and giving surrogates space to comment or ask questions made surrogates feel cared for and understood by providers, and also helped surrogates process information needed to make sound decisions.
Our study also provides beginning insights concerning surrogates' experiences when a provider's communication is not viewed as being caring or helpful. One surrogate reported feeling uneasy and pressured to make a DNR decision. It seemed that the provider did not demonstrate effective communication. However, in carefully reviewing the content of Sophia's POLST discussion with the provider, we found no explicit expressions of conflicts between them; moreover, she did not share these feelings with the provider. This discrepancy suggests that the absence of conflicts during a conversation does not guarantee that the conversation has gone well. Furthermore, in long-term care settings, surrogates' trust builds through ongoing positive interactions with providers and observations of quality care that their family member receives (Caron, Griffith, & Arcand, 2005a). Thus, if the surrogate was not satisfied with the care provided to her mother, the surrogate might have little trust in the provider, which might contribute to the feeling of discomfort during the conversation.
This study has several limitations. The sample was small and homogenous, involving 10 surrogates. Moreover, participants were recruited from only two PACE programs and one nursing home in a single geographic area. In addition, as provider participants identified eligible residents or PACE enrollees and their surrogates who met the inclusion criteria, they might have selected surrogates whom they felt more comfortable with for EOL discussions. Because of the cross-sectional nature of the study, we were unable to explore the nature of information processing and relationship building over time. A longitudinal study to examine these critical elements of provider–surrogate communication is particularly important in the context of people receiving long-term care services. Finally, we did not explore providers' perspectives about communication with surrogates, which should be a focus of future research. Despite these limitations, this study was, to our knowledge, the first to examine surrogates' experiences of POLST discussions in long-term care settings. Furthermore, it provides valuable information about surrogates' perceptions about providers' communication during POLST discussions for individuals with advanced dementia.
Implications for clinical practice
The findings of this study have important implications for nurse practitioners caring for persons with advanced dementia. Clinical information is critical for surrogates to make sound decisions; thus, nurse practitioners should think about what information is necessary for surrogates and how the information should be presented. Specifically, using the POLST form as a guide for communication and reviewing the form with surrogates enable not only the providers to have structured comprehensive discussions about EOL care but also the surrogates to process the clinical information better. More importantly, providers need to demonstrate strong communication skills, such as using the VALUE mnemonic approach or other valid communication strategies. As supported by our findings, giving surrogates the opportunity to ask questions and explain treatments using their own words can promote surrogates' understanding and feelings of being respected and understood.
The study described surrogates' experiences of engaging in POLST discussions. Most surrogates had a positive experience communicating POLST with providers. Providers' communication facilitated surrogates' information processing and made them feel respected and understood by providers. With effective communication, surrogates feel emotionally supported during communication and decision-making processes. Providers are encouraged to focus on developing expert communication skills for EOL care discussions.
This work was supported by the following: the National Institutes of Health and National Institute of Nursing Research [1F31NR015702-01A1 and T32NR009356]; the Sigma Theta Tau International ; the John A. Hartford Foundation's National Hartford Centers of Gerontological Nursing Excellence Award Program [13–115]; and the University of Pennsylvania School of Nursing Office of Nursing Research Award.
The authors thank Drs Pamela Cacchione and Karen Hirschman for their thoughtful comments on this article, as well as members of the Advanced Qualitative Research Collective at the University of Pennsylvania School of Nursing.
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Nurse practitioners can play a critical role in establishing healthy dietary habits to maintain weight control in the current obesogenic environment. This study indicates that poor eating self-regulation is one of the strongest modifiable predictors of overweight and obesity. Based on current clinical evidence and CMS’s reimbursement policy, nurse practitioners should consider high-intensity weight loss counseling for patients who are ready and motivated to lose weight. Furthermore, adopting pragmatic strategies to make eating self-regulation as manageable as possible may be beneficial for maintaining long-term weight loss. Further studies are needed to examine the effects of such strategies.
Authors' contributions: All authors have participated in the conceptualization, study design, data collection, and drafting and revising of the manuscript and have approved the content of this report. This study was performed as a part of the Master of Science in Nursing— Family Nurse Practitioner (MSN-FNP) degree requirement at St. David’s School of Nursing, Texas State University. R. Balani, H. Herrington, E. Bryant, and C. Lucas worked together in conceptualization, design of the study, and data collection, drafted and revised the initial manuscript, and approved the final manuscript as submitted. S. C. Kim supervised the project and participated in conceptualization, study design, and data collection. She also performed statistical analyses, drafted and revised the manuscript, and approved the final manuscript as submitted.
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