U.S. Clinicians’ Perspectives on Advance Care Planning for Persons with Dementia: A Qualitative Study

Abstract

BACKGROUND:

While advance care planning (ACP) for persons with dementia (PWD) can promote patient-centered care by aligning future healthcare with patient values, few PWD have documented ACPs for reasons incompletely understood. The objective of this paper is to characterize the perceived value of, barriers to, and successful strategies for completing ACP for PWD as reported by frontline clinicians.

METHODS:

Qualitative study using semi-structured interviews (August 2018 - December 2019) with clinicians (physicians, nurse practitioners, nurses, social workers) at 11 U.S. health systems. Interviews asked clinicians about their approaches to ACP with PWDs, including how ACP was initiated, what was discussed, how carepartners were involved, how decision-making was approached, and how decision-making capacity was assessed.

RESULTS:

Of 75 participating generalist and specialty clinicians from across the U.S., 61% reported conducting ACP with PWD, of whom 19% conducted ACP as early as possible with PWD. Three themes emerged: value of early ACP preserves PWD’s autonomy in cases of differing PWD carepartner values, acute medical crises, and clinician paternalism; barriers to ACP with PWD including the dynamic and subjective assessment of patient decision-making capacity, inconsistent awareness of cognitive impairment by clinicians, and the need to balance patient and family carepartner involvement; and strategies to support ACP include clarifying clinicians’ roles in ACP, standardizing clinicians’ approach to PWD and their carepartners, and making time for ACP and decision-making assessments that allow PWD and carepartner involvement regardless of the patients’ capacity.

CONCLUSIONS:

Clinicians found early ACP for PWD valuable in promoting patient-centered care among an at-risk population. In sharing their perspectives on conducting ACP for PWD, clinicians described challenges that are amenable to changes in training, workflow, and material support for clinician time. Clinical practices need sustainable scheduling and financial support models.

INTRODUCTION

Alzheimer’s disease and related dementias (ADRD) affect 55 million people worldwide, is the 7^th leading cause of death among all diseases, and has physical, psychological, social and economic impacts not only for persons living with dementia (PWD) but for their families and carepartners.^1,2 Growing evidence suggests that persons with ADRD are at risk for care that does not match their goals,^3,4 which contributes to significant carepartner burden and medical expenditures that are estimated to grow from $355 billion in 2021 to $1.1 trillion by 2050.²

Advance care planning (ACP) emerged during the last 30 years as a potential response to the problem of low-value end-of-life care,⁵ with the hope of increasing the delivery of goal-concordant care.⁶ ACP specifically intends to support person-centered medical decision-making by eliciting patient values, preferences, and goals regarding medical care.^3,7–9 While efforts to improve ACP continue in both clinical and research arenas, the lack of research to identify a significant association between ACP and goal-concordant end-of-life care has sparked a scientific debate regarding the utility of ACP.^5,10 Despite this controversy, dementia presents a unique opportunity for ACP to inform end-of-life medical care because of the inevitable loss of communication ability associated with progressive cognitive decline.¹¹ This is particularly germane in advanced dementia when healthcare services can often be burdensome, and when patients are unable to communicate preferences or carry out goals of care discussions.¹²

To address this challenge, guidance emerged to promote ACP for PWD.^{3,6,7,13–16} However, documented ACP among PWD remains low¹⁷ for reasons incompletely understood.¹⁸ Further, how to optimize ACP with PWDs is insufficiently characterized and existing recommendations for conducting ACP in persons with early-stage dementia are sparse and based on small studies with limited evidence.^3,7,8,16,19

Since clinicians play a key role in the diagnosis, management, and support of PWD and their families throughout the disease course, we sought to characterize the experience of frontline clinicians about the importance of and process for ACP for PWD. Little is known about US clinicians’ experience conducting ACP for PWD,⁴ and their perspectives could inform underlying barriers to ACP for PWD as well as strategies for success. Thus, this study examines the experience of frontline clinicians in conducting ACP for PWD, focusing on perceived benefits to patients and their carepartners, practical clinical challenges, and potential strategies to overcome challenges.

METHODS

Setting, Participants, and Study Design

This qualitative study of ACP included semi-structured interviews with clinicians from 11 health systems across the United States. We sampled a spectrum of centers to achieve variation based on purposive sampling criteria. Two investigators (K.L., J.W.) conferred with an advisory panel of ACP and palliative care leaders to sample health systems based on their size, region, type (e.g., academic, public), religious affiliation, and designation as an Alzheimer’s Disease Research Center. Clinician participants were identified in collaboration with site champions who were physician leaders who helped with recruitment (e.g., Chief Medical Officer) and purposively sampled based on role (e.g., physician, nurse), specialty, and ACP experience with ADRD. Participants were contacted via email and followed-up by phone. Interviews continued until thematic saturation was confirmed through deliberation.^20,21 For this study, we selected all transcripts in which participants discussed ACP for PWD, regardless of whether they had personally conducted ACP for PWD.

Interview Guide and Data Collection

A social scientist with qualitative methods and palliative care expertise (K.L.) guided development of a semi-structured interview guide based on a literature appraisal and clinical experience (J.T., P.K.G.). Open-ended questions probed clinicians’ approaches to ACP among all patients, including approaches for PWD, and barriers and facilitators to ACP among those patients. (Example questions in Figure 1)

Figure 1.

Selected questions from the interview guide. Figure 1 includes an extract of selected questions from the interview guide.

Between August 2018 and December 2019, teams of two investigators (D.C.A, P.K.G., A.G., S.P., A.J.R., J.T., J.S.W., K.L.) with formal training in qualitative interviewing conducted interviews at the participants’ workplace or by phone and took field notes. Participants provided verbal consent; all interviews were audio recorded. Participants completed a demographic survey at the conclusion of the interview. (Supplementary Figure S1) This study was approved by the Partners HealthCare Institutional Review Board.

Qualitative Analysis

Interviews were professionally transcribed and uploaded to NVivo 11 (QSR International; Melbourne, Australia) for management and coding. J.T., P.K.G. and A.R. created a preliminary codebook based on the questioning structure of the interview guide.²² J.T. and P.K.G. iteratively revised the codebook through joint deliberation after independently coding 17 of 75 ADRD-related transcripts (22.7%) and allowed new codes to emerge inductively. K.L. served as an arbiter. The codebook was finalized after inter-coder agreement of over 90% was reached. All interviews were coded (N.D., D.C., O.B.) using the final codebook.²⁰ Codes were organized into key domains, including timing, triggers and initiation of ACP, evaluation of decisional capacity, the role of support persons, shared decision-making with PWD, and the process and content of ACP conversations;⁷ these were subsequently developed into themes. To enumerate ACP triggers and timing, two coders (N.D., O.B.) classified relevant extracts based on participant responses about when they initiated ACP. Reporting follows COREQ guidelines.²³

RESULTS

A total of 75 clinicians (57 physicians, 5 nurse practitioners, 5 nurses, 5 social workers and 3 others) who spoke about ACP in ADRD are included in this analysis. They are drawn from 11 health systems across 6 states. (Table 1) Among these, 54.7% were female and 77.3% self-identified as White. Most worked in primary care or internal medicine (44.0%), geriatrics (24.0%), and palliative care (18.7%), and 44% reported 16 or more years of clinical experience. (Table 2)

Table 1.

Characteristics of included health systems

Health system characteristics (n=11)
Health systems, No.	11
Region, No.
West	4
South	2
Midwest	1
Northeast	4
Type, No.
Academic	8
Public	1
Large not-for profit	2
Alzheimer’s Disease Research Center, No.
Yes	4
No	7
Noted Religious affiliation, No.
Yes	2
No	9
Bed count, mean (SD)	1860.4 (1602.3)
Total physician count, mean (SD)	2241.6 (1869.9)

Table 2.

Characteristics of included participants

Clinician Characteristics (n=75)
Clinicians, No.	75
Age, mean (SD)	46.0 (SD = 9.9)
25-34	6 (8.0%)
35-44	28 (37.3%)
45-54	17 (22.7%)
55-64	12 (16.0%)
65+	2 (2.7%)
No reply	10 (13.3%)
Gender, N (%)
Female	41 (54.7%)
Male	29 (38.7%)
No reply	5 (6.7%)
Race, N (%)
White, non-Hispanic	55 (73.3%)
White, Hispanic	3 (4.0%)
Asian	8 (10.7%)
Black or African American	3 (4.0%)
Mixed	1 (1.3%)
No reply	5 (6.7%)
Ethnicity, N (%)
Hispanic	3 (4.0%)
Non-Hispanic	67 (89.3%)
No reply	5 (6.7%)
Type of Clinician, N (%)
Physician	57 (76.0%)
Nurse Practitioner	5 (6.7%)
Nurse	5 (6.7%)
Social Worker	5 (6.7%)
Other	3 (4.0%)
Specialty, N (%)*
Internal Medicine/Hospitalist	23 (30.7%)
Geriatrics	18 (24.0%)
Palliative Care/Hospice	14 (18.7%)
Surgery	14 (18.7%)
Primary Care	10 (13.3%)
Neurology	4 (5.3%)
Other Specialty†	11 (14.7%)
Years of Clinical Service, N (%)
0-5	8 (10.7%)
6-15	26 (34.7%)
16-25	18 (24.0%)
26-35	9 (12.0%)
36-45	6 (8.0%)
No reply	8 (10.7%)
Interview type, N (%)
In-person	64 (85.3%)
Phone	11 (14.7%)
Interview time in minutes, mean (SD)	40.7 (SD = 9.5)

^*Not add to 100% because some clinicians listed more than one specialty.

^†Other specialties included nephrology, critical care, emergency medicine, urology, gynecology surgery and acute care.

Of these, based on coded extracts, 61.3% reported having conducted ACP with PWD, though few did so routinely, and a minority (19.0%) described their ACP timing for PWD “as early as possible”. ACP conversations were most common during initial or annual assessments (e.g. Medicare wellness visit) (28.6%). ACP was similarly prompted by a significant clinical change (28.6%), such as a hospitalization or expectation that death is imminent.

Three themes emerged: the value of early ACP to preserving PWD autonomy, barriers to ACP with PWD, and strategies to support ACP in early-stage dementia. (Figure 2; Table 3)

Figure 2.

Themes and Subthemes Reflecting Value and Barriers to Advance Care Planning for Older Patients with Early-Stage Dementia: Clinician Perspectives. Figure 2 illustrates the tension between importance of ACP in early dementia (left) and challenges (right) that can contribute to lack of ACP discussions between clinicians, patients with dementia, and carepartners.

Table 3.

Exemplar Quotes for Themes

Value of Early ACP – Quotes
Preserved decision-making capacity	The earlier the better. I don’t wait for it to progress. If there are signs of dementia, I may even tell them, ‘Look, this is maybe early. Maybe you’ll have neurologist kind of confirm the diagnosis, but either way, I want to get these things in place.’ …I try to lighten the mood, just reminding us, none of us get out of this life alive, so we need to have those plans documented. - ID:113 It’s something that I certainly address if a patient is bringing it up or I think it’s needed to do that now before their memory gets worse, and they no longer have capacity to make decisions for themselves that we can legally document as being valid. – ID:29
Preserving patient autonomy	Without ACP The other day a lady, an old lady. She was very “demented”, had no idea what was going on. She was all kind of contracted and she was in with sepsis and she had a large decubitus that was necrotic. The son that was the medical power of attorney wanted everything done and the hospitalist had tried to talk to him about, “This is not what we need to do for her. We just need to make her comfortable.” He said, “No, no, no, I want the surgeon to come and clean this up.” When I got there, it was the other son and he’s like “No, I think, yeah, we would just want to make her comfortable. We wouldn’t want to do all that. -ID:136 With ACP “A lot of people stress the importance of wanting to avoid hospitalizations. They don’t want to be in the hospital and I’m definitely all for that, because knowing people who have dementia, the more in and out of the hospital they go, the faster they end up declining at the end..” -ID:177
Barriers to ACP in Early-Stage Dementia - Quotes
Dynamic and Subjective Assessment of Patient Decision-Making Capacity	It’s a little bit about trying to have that discussion. You know, tell me what’s important to you. It’s kind of how you would measure capacity in a way, right? Can you understand what I am trying to say? Repeat it back. Can you tell me why you are choosing a certain way to go? Are you consistent? You know, is this completely different from what you said before. I mean, those are all things that get you to think, okay this person does have capacity and can have a discussion about Advanced Care Planning. It’s very similar to any—do they have capacity to make any type of medical decision. -ID:52
Clinicians are Not Always Aware that a Patient has Dementia	People who are diagnosed with Alzheimer’s disease or other dementias, they don’t typically see themselves as being terminally ill, nor do their family members and usually nor do physicians. – ID:177
Balancing Patient and Care Partner Involvement	Patient-centered approach So, you don’t want to discount preferences or values or wishes that they are expressing just because they are impaired. If it’s not making a lot of sense, like they are refusing to go to the hospital, but then can clearly barely breath, that’s a different scenario. They may not—you know, if you can’t get through a full conversation with them and understanding if they are really understanding of the decision they are making, yes, you just take them to the hospital, and you know, figure out why they can’t breath or whatever. Get them emergent care. But I guess, like they may still have really consistent preferences, and you can help them make that decision, even if they are not making like a fully capable decision or in other ways have been deemed to lack capacity or now the surrogate is making most decisions. – ID:60 Care partner-supported approach I try to have the family members or, if the patient is able to just describe their quality of life before the injury more broadly, but then I do focus on when there is a patient with cognitive decline, really understanding what level of function they have, what their limitations are. Then, usually in that process, we try to get a sense for what their quality is, what makes them happy and what are frustrations or limitations, because then when we discuss how the acute injury impacts that, usually that defines what the road, the recovery road looks like, we can’t always say what the final outcome is, three, six or 12 months down the line. We don’t have that precision, but it does help define what that trajectory looks like, what a patient’s pathway of recovery looks like. That often becomes a defining element to deciding on goals of care – ID:148 But I would say more often than not, the conversation is with someone who might be in the earlier stages of dementia, and in that case, there’s just kind of a lot of effort around assessing constantly their understanding about what’s going on. And I think then it’s really key to include family members or friends if they have them. – ID:153 Care partner-centered approach It’s important because, obviously, if you’re waiting to have that conversation until the person can’t really even understand what you’re talking about, you’ve pretty much waited too long and it’s difficult to involve that person to the degree that they probably would have wanted to be able to be involved and you end up having all the conversations with the family member or the POA. -ID:177
Timing ACP and the Challenge of Hypothetical Future Decision-making	I think once people are more sick… They can’t really think ahead of a future health fate and then reliably tell us values that we can use, or it’s less and less reliable as they get more sick. -ID:157 So they may not actually have a lot of insight into their degree of impairment, and, so, from their perspective, they might not even feel like they have an illness, and, so, those people are difficult to kind of orient toward the future and things you’re telling them will happen. They may just not believe you. Those groups of people are more difficult. -ID:178
Strategies to Support ACP in Early-stage Dementia – Quotes
Making time, clarifying clinician role, and standardizing approach to patient engagement	I have plenty of patients who feel it is a very important part of their health care to make sure their doctor knows they would not want to linger and would not want to be a vegetable, and would not want to be in a nursing home… They just want to make sure that their doctor knows they don’t want to be kept alive in a vegetative state and don’t want to be in a nursing home. It’s one of those grand fears of everybody is they’ll end up parked in some nursing home somewhere, and they want to make sure their doctor knows. – ID:80 I think we can do some cognitive testing, and we can assess capacity to make certain decisions. The capacity to determine a health care proxy is lower than the kind of required capacity legally to make a decision… So, you have to be able to explain… It’s like the 5 C’s of capacity. But for health care directive, all you have to say is, you have to be consistent in who you name. And you have to be able to at least somehow rationally repeat back that this person is going to be able to make life and death decisions. And then that’s all really that is required. –ID:55

Value of Early ACP

Preserved Decision-Making Capacity and Patient Autonomy

Most clinicians valued conducting ACP early in the disease course to understand and document PWD’s preferences before inevitable cognitive deterioration. Clinicians felt that ACP should occur “…while people can still make decisions…“ (ID:140). Another clinician said, “…have the conversation earlier, because when we see that there is some of that memory loss, I’ll say, ‘Let’s have this discussion while we know that we’re able to…’” (ID:97) However, a minority of clinicians expressed difficulty in translating goals and preferences into treatment plans: “I feel like [ACP] is helpful because it gives people goalposts…but how that then drives a care plan…isn’t always that obvious.” (ID:60)

Three subthemes demonstrated the specific importance of stated preferences and values by PWD in supporting patient-centered care: when patient and carepartner preferences differ, in acute medical crises, and to prevent clinician paternalism (i.e., clinician-driven decision-making without accounting for patients’ wishes).

ACP can help when carepartners’ wishes conflicted with wishes of PWD.

One participant said, “…[I]f you ask a family, what do you want us to do, you’ll get a very different answer than if you say, ‘What do you think your mother would say if she was able to comment on these options?’ ‘Oh, she would never want this, but I don’t want to lose my mother.’” (ID:222). ACP helped identify these differences.

Identified patient preferences could also potentially help guide the arc of acute medical crises, when carepartners could otherwise be lost in the details of daily medical issues. For example, in the absence of ACP, one participant noted that “attempts to talk to [carepartners] about how we should be taking care of [the patient] based on what [the patient] would want…always ended up being about what was happening that day, like, how were her lab values…Ultimately, she died in ICU…” (ID:49)

Clinicians cited ACP as being potentially valuable for protecting against clinician paternalism.

Participants described cases where treatment options were withheld owing to the patient’s cognitive impairment. “A family member can sign the form, but the patients have to understand and know what they’re getting into…if…the person can’t participate…I don’t think they’re a candidate” (ID:223) Having previously articulated values could have preserved patient-centered care in this example. For example, another clinician describes how understanding the PWD values helped navigate a difficult situation. “We just had a [64 yo] woman [with] dementia [and] a very devoted loving husband who cared for her at home…even though she couldn’t understand…what was happening to her,…he really understood I think what [potential surgery] meant for her, that we could make her better and she could go home… So, I think for me it’s just sort of understanding what the health care provider [can offer], what…the patient wants and then putting that in context of what we c[an] do…” (ID:138)

Barriers to ACP in Early-Stage Dementia

Dynamic and Subjective Assessment of Patient Decision-Making Capacity

One challenge clinicians faced was determining decision-making capacity for PWD. While cognition is the main determinant of capacity and can be measured with validated psychometric tests, decision-making capacity itself was described as fluid and existing on a spectrum. “Capacity is not a black and white thing” (ID:252) was a statement that resonated with many participants. One participant explained: “Even if patients have mild or moderate dementia, it doesn’t necessarily mean that they’re not able to make [ACP] decisions. They might be able to make some…” (ID:160) Clinicians further described the process of determining a PWD’s decision-making capacity as changeable and subjective. Capacity is situational whereby patients could pass one “test” of capacity for one type of decision but not another. “Someone may say, ‘I don’t want grilled cheese for lunch’ and they have capacity to say that, but you start talking to them about another topic and…they can’t really engage in that discussion.” (ID:252)

To assess capacity for ACP, many clinicians used a series of questions: “Are they communicating…do they seem to understand what we are talking about here? Are they appreciating the relevance of that information to themselves in their situation and are they using a rational logic? If they are consistent and they are indicating that they want that person [to be proxy], even if they’re pretty impaired, that can be a very reasonable decision to make, and…they are making it knowingly and with capacity.” (ID:60) With answers in hand, determining capacity was often subjective. “…I might try to get a feel for how much they understand and how much they are keeping track of…Then it’s sort of a gestalt, for me. It’s not a scoring thing.” (ID:231)

Inconsistent Awareness of Cognitive Impairment by Clinicians

Complicating the determination of capacity was the issue of unrecognized dementia. One participant noted, “…I do think sometimes it’s underrecognized that somebody has dementia and doesn’t really understand.” (ID:139) Lack of routine screening is felt to contribute to this phenomenon: “Everybody who has a geriatrics consult…gets a cognitive screen with every hospitalization…[but i]n our… clinic, there is no cognitive screening done.” (ID:57)

Balancing Patient and Carepartner Involvement

Although dementia requires patient and carepartner (or proxy) involvement, determining when to defer to carepartners was challenging. Many clinicians automatically defaulted to carepartners when communication with the PWD was difficult. “If you’ve waited too long…you end up having all the conversations with the family member…” (ID:177) Some clinicians pursued a supported decision-making approach, where clinicians started conversations with the PWD and then relied on carepartners to clarify patient values: “I think you certainly get as much from an individual as you can and then…you talk to the family and you get the big picture with as many pieces of information as you can.” (ID:252) Some clinicians were strongly committed to patient-led decision-making regardless of dementia severity. “We preach the patient is the lead and try to draw them out as much as possible.” (ID:174) These clinicians supported honoring the expressed preferences of PWD, particularly because they can help to clarify preferences that may be in conflict with their carepartners’ wishes: “If the patient with dementia is with it enough to really make their wishes very clear and very obvious, most of the children who even share opposite wishes tend to acknowledge and embrace whatever the patient is saying…” (ID:209)

Identifying Optimal ACP Timing: Balancing Diminishing Capacity with Future Uncertainty Needs

While early ACP was valued, optimally timing ACP was challenging: “…the key…is really to have discussions early while people can still make decisions…You can’t make decisions too early, because they’re not relevant, but because of that fear, I think we often make them too late and then it’s too late.” (ID:140) Too early and ACP discussions focused on future medical decisions, such as “Would you want your heart re-started [or want to] be on a ventilator?” (ID:29) that are “hard because you’re planning for something that…will…not happen for quite a while…” (ID:177) Complicating this was that many PWD “are not aware of their cognitive impairments…[and] are difficult to kind of orient toward the future…” (ID:177) Thus, some patients and carepartners preferred to “…defer and just say ‘…we’ll just cross that bridge when we come to it.’” (ID:177) One practical solution for ACP in early-stage dementia was for some clinicians to focus on soliciting values rather than decisions from PWD. “[I]t’s really hard to…decide what the procedures are going to [be] ahead of time, [so] you talk about what someone’s values are.” (ID:140)

Strategies to Support ACP in Early-stage Dementia

Despite the challenges, clinicians offered insights into key factors and strategies that could lead to successful ACP discussion and documentation among PWD. These include clarifying clinicians’ responsibilities in ACP, standardizing the approach to PWD or older adults at risk for ADRD, and ultimately prioritizing ACP among competing demands.

Clarifying Clinicians’ Role in ACP

For patients with both primary care and specialty providers, clinicians described a lack of clarity about which healthcare provider should be responsible for ACP. For example: “The primary care person says the cardiologist should have the [conversation]…[but s]ometimes the patient wants to have this conversation with their PCP…What I would love to see is some sort of documentation where someone says, ‘I take on responsibility for this conversation.’” (ID:140) While this problem was often alleviated if the patient wants to discuss ACP, “It’s something that I certainly address if a patient is bringing it up…” (ID:29), it could be unresolved without such patient or carepartner initiative.

Conducting Universal Cognitive Assessments

Some clinicians felt a standardized approach to assessing and engaging with older patients could facilitate ACP for PWD. For example, “I do a frailty assessment on everybody. I do not do a cognitive assessment on everybody; I probably should…” (ID:56) Another participant said, “I think anyone older than 65 might need someone else there. Someone else has got to be there, whether it’s a friend of family. You need someone that you can defer to.” (ID:172) This approach could lead to supported decision-making amongst patients, carepartners, and clinicians, and avoid eliminating the patient’s voice when it is too late.

Prioritizing ACP Within Limited Clinical Time and Competing Demands

”I think being willing to set aside time to sit down…and not be in a hurry…but to listen…make[s] for a successful process.” (ID:193) But lack of time for ACP was a critical barrier. “I don’t think [my colleagues] like [ACP]. [They] feel like it drags out the visit.…” (ID:113) Further, to conduct ACP in a way that fully accounts for patients’ cognitive status and capacity takes too much time for most clinics and clinicians: “We have been advocating that for [routine cognitive assessment] for a long time. It’s been deemed to take too much time.” (ID: 57)

DISCUSSION

This large national study of frontline clinicians, including a mix geriatric and non-geriatric specialists, adds to the discussion about the value of conducting early ACP in PWD by highlighting practical challenges and considerations for implementing ACP on the frontline. While most participants agreed that early ACP was important for PWD to capture patients’ values before loss of decision-making capacity, some felt that translating those values into actual treatment plans was challenging. Further, the nuts and bolts of conducting ACP for PWD was complicated by numerous factors, including 1. inconsistent awareness of patients’ cognitive impairment by clinicians, 2. subjectivity of clinical decision-making capacity assessments, 3. lack of clarity about which clinicians are responsible for ACP, 4. the challenge of balancing the voice of patients who have communication difficulties with the voice of their carepartners, and ultimately 5. time limitations pervasive in the practice of clinical medicine. Taken together, these challenges complicate the intent trying to protect patient autonomy in early dementia by documenting ACP.

Autonomy, which is defined as is the ability of an individual to make their own choices without manipulation by external forces,²⁴ is recognized as an inviolable right regardless of mental incapacity.^25,26 Clinical ethics recommends that, to the greatest extent possible, patients be engaged in decisions involving their own care regardless of their cognitive capacity.^27,28 To this end, some clinicians in our study described an approach to ACP for PWD consistent with “supported decision-making” and “facilitated decision-making.”^24,29 Specifically, their approach balanced PWD and carepartner voices in decision-making even when the PWD had trouble communicating. These are more recent models of care intended to broadly protect all patients with developmental, intellectual and cognitive disabilities, and are highly relevant to PWD.²⁹ These ‘alternative’ models to traditional “shared decision-making” have the advantage of providing role clarity for carepartners and centering on PWD autonomy regardless of a patients’ fluctuating cognition. As such, supported and facilitated decision-making approaches are consistent with recent guidelines,^3,7,8,16,19 state legislation,³⁰ and the desires of many PWD who want to be central to their decision-making processes.³¹

Unfortunately, engaging PWD in ACP requires additional time. For example, formal decision-making capacity assessments can take 25 minutes on average by some estimates.^32,33 Time constraints can be one reason why clinicians may default to carepartners in ACP^28,34 and overlook direct engagement with PWD. The problem with this approach is that carepartner wishes may differ from those of the PWD.^14,35

Further, not all clinicians are equally equipped with the appropriate skillset to engage with and assess cognition in PWD. Hence the benefit of ACP in early-stage dementia, when communication ability is largely still preserved. Waiting until later stages places pressure on the specialist neurology and geriatric medicine workforce who are more specifically equipped care for PWD, but whose numbers are insufficient to meet looming demand of the growing population of older adults.³⁶

Our study also highlights the challenge of care coordination between primary care, geriatrician and non-geriatrician specialists. We found a lack of agreement about which clinician is responsible for ACP, which has been reported elsewhere.³⁷ Several solutions are available. First is care coordination among clinicians, with clear communication amongst a PWD’s clinical providers about who will take responsibility for ACP. Second is the use of tools such as the “Dementia Directive” (https://dementia-directive.org) that was developed by clinical experts in geriatrics, neurology and palliative care to structure ACP into an iterative process that can be addressed over time, as dementia progresses, by carepartners and non-specialist clinicians.³⁸

Beyond clinician-level strategies, policy and system changes are needed to address the commonly cited barriers to ACP of lack of training and lack of time.^37,39–42 One specific example is seen in the Massachusetts state law that requires ADRD training for physicians, physician’s assistants, and nurses in continuing medical education programs that are required for licensure.³⁰ The law also requires hospitals to have an operational plan in place for recognizing and managing individuals with dementia.³⁰ Such policies help shift responsibility for practice change from individual clinicians to healthcare systems, which can create practice environments favorable to helping clinician prioritize ACP amidst competing demands.

This study is limited by lack of data from patients and carepartners, which will be addressed in future work. However, given that ACP is often raised by clinicians, this limitation is mitigated by the breadth of clinician specialists who completed our interviews, and the geographic diversity of sampling across the US. This provided a deeper understanding of how ACP for PWD is addressed, and the barriers and strategies used across diverse regions of the U.S.

Taken together, US clinicians agree that early ACP is important to align care delivery for PWD with their preferences. Our findings identify key barriers to ACP for PWD and suggest a need for policy changes that support system-level engagement to augment clinical delivery models to systematize the approach to ACP for PWD. In this way, care delivery changes can improve care for PWD by addressing deficiencies beyond the control of the frontline clinician.

Supplementary Material

supinfo

Supplementary Figure S1. Participant Survey. Supplementary Figure S1 Includes the survey instrument administered to participating clinicians to collect demographic information.

Key Points.

• Frontline clinicians value early ACP for patients with dementia.

• Clinical challenges such as using judgement to determine patient decisional capacity, discerning and supporting patient preferences when communication is impaired, and attempting to balance patient and family carepartner roles in ACP need to be addressed.

• Practical challenges such as lack of time to comprehensively assess cognition, decisional capacity and discuss ACP, and lack of clarity about which clinician should discuss ACP present additional barriers.

Why does this matter?

• Successfully supporting clinicians to conduct ACP for persons with dementia requires resources beyond the resources typically provided to clinicians.