Influence of clinical context on interpretation and use of an advance care planning policy: a qualitative study
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* Marta Shaw
* Shelley Raffin Bouchal
* Lauren Hutchison
* Reanne Booker
* Jayna Holroyd-Leduc
* Deborah White
* Andrew Grant
* Jessica Simon

## Abstract

**Background:** Advance care planning is a process through which people share their values, goals and preferences regarding future medical treatments with the purpose of aligning care received with patient wishes. The objective of this study was to explore perspectives from patients and clinicians in 4 clinical settings to understand how context influences interpretation and application of advance care planning processes.

**Methods:** This study used a qualitative interpretive descriptive design. Patient and clinician participants were recruited across 4 clinical outpatient settings (cancer, heart failure, renal failure and supportive living) in Calgary and Edmonton. Data were collected between 2014 and 2015 by means of recorded one-on-one semistructured interviews. We analyzed the data using thematic analysis in 2016–2017.

**Results:** Thirty-four patients and 34 clinicians participated in interviews. Themes common to all 4 contexts were lack of shared understanding between patients and clinicians, and a lack of consistent clinical process related to advance care planning. Advance care planning understanding and process varied substantially between contexts. This variation seemed to be driven by differences in perceptions around disease burden and the nature of the physician–patient relationship.

**Interpretation:** Provision of a system-wide policy and procedural framework alone was not found to be sufficient to form a standardized approach to advance care planning, as considerable variability existed in advance care planning process between and within clinical settings. Quality-improvement methods that consider local processes, gaps and barriers can help in developing a consistent, comprehensive process.

There is growing demand for person-centred care that reflects the wishes of patients.1 All those with capacity can consent to or decline medical interventions; however, seriously ill people may not be capable of making or communicating their decisions.2 Advance care planning is a process that supports adults at any age or stage of health in sharing their values, goals and preferences regarding future medical care.3 To improve concordance between patient wishes and provided care, health care systems across Canada are engaged in efforts to increase the frequency and quality of advance care planning.

Rates of advance care planning engagement and concordance between patient wishes and care provided remain low in Canada.4–6 Various patient and clinician factors affect the uptake of advance care planning,7 including findings from work by this research team in the supportive living setting exploring patient and health care provider readiness to engage in advance care planning.8 Different clinical contexts can also uniquely influence the attitudes, approaches and processes of advance care planning.9–11 These differences have not been examined within a single study in 1 health region that operates under the same system-wide policy and procedure. This is important because it is difficult to gain a robust understanding of the factors influencing uptake of advance care planning among clinical contexts if these are compared across varying health regions, each with unique advance care planning policies and priorities. Furthermore, advance care planning interventions that have been successful tend to target advance care planning processes.12 Thus, understanding factors that uniquely affect the process of advance care planning across clinical contexts can inform targeted interventions.

Starting in 2008, Alberta Health Services began implementing a policy and procedure for advance care planning, and a framework for communicating health care decisions and medical orders called Goals of Care Designations. The policy provides broad recommendations and emphasizes early initiation of conversations, with a focus on patient wishes and goals for treatment, within appropriate therapeutic options. Implementation of advance care planning was accompanied by the building of infrastructure (website, patient resources, standardized Goals of Care Designation and conversation tracking record) and education via provider e-module and seminars.

The objective of this study was to compare patient and clinician perceptions from 4 clinical settings (contexts): cancer, chronic disease (heart and renal failure) and elder care (residents of supportive living facilities). We aimed to understand how clinical context may influence interpretation and uptake of existing advance care planning policy and procedure.

## Methods

### Design

We applied a qualitative interpretive descriptive design to gain an understanding of advance care planning process between and among the 4 contexts and how this process is shaped.13 Interpretive descriptive design is a noncategoric qualitative research methodology that aims to generate knowledge pertaining to a practice question of inquiry. It is well suited to the aim of this study as it promotes the creation of knowledge for the purpose of informed action.

### Participants

Patients were eligible if they were aged 18 years or more, spoke English, had no cognitive impairment and had 1 or more of the following conditions: congestive heart failure, cancer (leukemia or lymphoma), chronic renal failure or residing in supportive living.14 Exclusion criteria included lack of capacity to consent. Patients were invited to participate in the study by nurse managers. Clinicians were eligible for participation if they were employed within 1 of the clinical contexts under study. They were recruited by means of snowball sampling.15

### Setting

Edmonton and Calgary are the largest 2 cities in the western Canadian province of Alberta. Participants were enrolled between April 2014 and June 2015 from 4 outpatient settings: 4 supportive living facilities in Calgary, 1 heart function outpatient clinic in Calgary and 1 in Edmonton, 1 cancer outpatient clinic in Calgary and 1 in Edmonton, and 1 renal clinic in Calgary. These patients are at risk for both chronic and acute deterioration of their condition, frequent hospital admissions and death.16–19 Thus, these settings have been identified as priority areas for advance care planning by the provincial health system20 and are important end users of data regarding advance care planning.

### Data collection

Patients were interviewed in the clinic or supportive living facility. Clinicians were interviewed in their location of choice. We used one-on-one semistructured interviews with guides8 addressing broad questions about the advance care planning process, individual roles, barriers and facilitators (Appendix 1, available at [www.cmajopen.ca/content/8/1/E9/suppl/DC1](http://www.cmajopen.ca/content/8/1/E9/suppl/DC1)). We developed the interview guides after a review of the literature, exploring stages of change theory in relation to advance care planning.8,21

Four trained interviewers (including M.S., L.H. and R.B.) conducted all interviews, with a single interviewer assigned to each setting. Interviews lasted between 20 minutes and 1 hour. Interviews were audiorecorded, transcribed verbatim and uploaded to the Health and Research Data Repository, a secure virtual research environment at the University of Alberta. Field notes made by the interviewers captured additional observations, such as characteristics of the participants’ setting and any hearing or comprehension problems. Interviews continued until saturation of data on advance care planning perspectives was reached, as determined by regular meetings among the interviewers.

### Data analysis

Coded data were entered into the computer software NVivo (QSR International) (M.S., L.H., R.B.). In accordance with the flexibility of interpretive descriptive design, we performed a thematic analysis.22 We analyzed the data for each setting separately by 1) immersion in the data during data collection, during which the interviewers listened to each interview, read transcripts and made notes to gain a familiarity with overarching messages; 2) coding by each interviewer with guidance and scrutiny from content and methodological experts (J.S., S.R.B.); and 3) development of a subtheme template by grouping codes and refining patterns through a constant comparative method. Emerging patterns between groupings were challenged, reviewed and revised.23

Next, the research team, including a palliative care doctor (J.S.), a nursing researcher (PhD) (S.R.B.), a health services research doctoral student (M.S.) and 2 nursing master’s students (L.H., R.B.), met over the course of 2016–2017 to analyze the data, with comparison across all 4 clinical contexts, by familiarization with the data through review of notes, codes and groupings; amalgamation of subtheme templates through refinement via assessment of similarities/differences and patterns; and development of final themes (Appendix 2, available at [www.cmajopen.ca/content/8/1/E9/suppl/DC1](http://www.cmajopen.ca/content/8/1/E9/suppl/DC1)), performed inductively from the analysis.

We did not use an a priori coding tree; rather, data informed the themes. The guiding goal was to describe the advance care planning process among and between contexts, and to gain an understanding of the factors that influence that process. Through reflection, debate and comparison, we used subthemes to develop a hierarchical system of overarching (i.e., conversation drivers) and more narrow (i.e., patient–clinician relationship) themes. The researchers were focused on addressing the stated analytic goal while also being receptive to any interview information that might alter or expand the purpose.

### Ethics approval

This study was approved by the University of Calgary Conjoint Research Ethics Board. Written informed consent was obtained from each participant.

## Results

In total, 66 interviews were conducted with 34 clinicians and 34 patients (Table 1). Two themes emerged common to all 4 contexts: lack of shared understanding between patients and clinicians, and lack of consistent clinical process related to advance care planning. Understanding of advance care planning and the advance care planning process varied between contexts, driven by disease burden and the nature of the clinician–patient relationship.

View this table:
[Table 1:](http://www.cmajopen.ca/content/8/1/E9/T1)

Table 1: 
Summary of participants by role

### Lack of shared understanding of advance care planning

Patients and clinicians expressed varying conceptualizations of advance care planning (Table 2). This was often not a term familiar to patients, and many associated advance care planning exclusively with the completion of related end-of-life activities, such as transitioning to nonindependent living and completing a will. Some patients felt that advance care planning was synonymous with planning the next medical intervention. When asked directly about specific activities, patients exhibited a thoughtful approach to key advance care planning steps (thinking, discussing, documenting).

View this table:
[Table 2:](http://www.cmajopen.ca/content/8/1/E9/T2)

Table 2: 
Quotes illustrating themes

In contrast, clinicians across all contexts expressed a complex understanding of advance care planning as a process by which to elicit values and preferences for future health care, particularly in life-threatening conditions, and to communicate prognosis. Still, there was concern among clinicians that a greater emphasis was sometimes placed on completion of medical order forms (Goals of Care Designations) than on conversations and elucidation of values.

### Lack of common advance care planning process and uncertainty around roles

When advance care planning was considered to be a multidisciplinary activity, role challenges were particularly apparent (Table 2). In the heart failure context, advance care planning was often nurse led, but communication between physicians and nurses was not standardized, and physicians were sometimes unsure about how the process functioned. In supportive living, nonphysician clinicians were conflicted, knowing that they had a responsibility in the advance care planning process but uncertain about its extent. In the renal failure context, advance care planning tasks were inconsistently passed among clinical staff, physicians, a dedicated advance care planning nurse or palliative care consultants. For example, 1 nursing staff member indicated that she annually alerted the physician to update Goals of Care Designations forms and discussions, whereas physicians stated that they referred patients to the advance care planning nurse or palliative care consultants.

These various approaches are not mutually exclusive but indicate a lack of consistency in the initiation of advance care planning. In the cancer setting, advance care planning appeared to be primarily, if not exclusively, the responsibility of physicians, some of whom embraced it whereas others expressed unease.

### Conversation drivers

The nature and timing of advance care planning conversations appeared to be driven by 2 related considerations that varied between contexts and clinician role: clinicians’ perception of disease burden, and the relationship between clinicians and patients (Table 2).

#### Disease burden

Physician perceptions of disease burden emerged as a major driving force in advance care planning conversations, including the subjective assessment of the impact of disease on the patient’s function and quality of life, expected degree of benefit from treatments and expected trajectory of illness. Physicians’ beliefs regarding when a disease had become “burdensome” appeared to determine when conversations were initiated, which, in turn, established the purpose of advance care planning conversations.

Illness complexity and fluctuation factored into the advance care planning approach for the heart failure, renal failure and cancer contexts in ways specific to the context. In the heart failure setting, ongoing and practically focused advance care planning was pursued in expectation of the fluctuation inherent in patients’ decline. Advance care planning conversations determined treatments and interventions throughout the course of illness or health decline to optimize patients’ quality of life as related to physical functioning. In the cancer setting, the possibility of cure appeared to hinder physicians from engaging in advance care planning, which was reserved for a deterioration in the patient’s health status, usually associated with treatment failure. Similarly, in the renal failure setting, advance care planning was triggered by substantial health decline and, therefore, focused on end-of-life planning. In the supportive living context, initiation of advance care planning conversations was driven by clinicians’ perception of patients’ physical functioning and frailty, and the purpose of advance care planning was to develop treatment plans based on patients’ current state. Physicians found determination of quality of life to be difficult owing to the high prevalence of dementia.

Patients with heart failure were willing to have conversations about advance care planning early. Patients with cancer were receptive to advance care planning and felt that deteriorating health status lent itself well to initiation of this topic, although some highlighted the problematic nature of initiating conversations during an acute medical event. Unlike in the other contexts, there was striking agreement between patients and clinicians in the renal failure setting, with both opting to leave advance care planning discussions until a time when patients were acutely ill and in substantial health decline. The considerations of patients in supportive living for medical intervention were prioritized based on prospects for physical independence, quality of life and family considerations rather than the physical functioning that drove health care providers to broach advance care planning.

#### Patient–clinician relationship

The relationship between patient and clinician was a second important conversation driver (Table 2). Clinicians valued building rapport before engaging in advance care planning discussions, but professional role influenced the content of conversations. Allied health care professionals tended to emphasize the importance of providing support and understanding patients’ values. Conversely, many physicians described taking a directive role in the relationship, focusing on the specifics of illness, and treatment options or availability.

## Interpretation

Our findings show there were few instances in which clinicians and patients were congruent in their understanding and conceptualization of advance care planning. The advance care planning process was inconsistent within and between settings, compounded by some providers’ uncertainty about their role in the process. Conversations were driven by clinicians’ perceptions around progression of disease and the relationship between providers and patients. These perceptions, in turn, determined the timing and content of advance care planning conversations. Although attitudinal similarities were found within each setting, initiation of advance care planning was largely provider dependent, which highlights the lack of an explicit and routinized process to engage patients.

A system-wide policy and procedural framework does not appear sufficient to form a standardized early approach to advance care planning, as we identified considerable variability in specific clinical considerations that affect and determine advance care planning. Our study adds to the literature by identifying clinicians’ perception of disease burden as a key determinant of the timing and content of advance care planning.

The process of advance care planning has not been studied widely.12 As was found in the current study, patients, particularly as they age, are willing to engage, but their knowledge of advance care planning remains limited.8,24 Our findings suggest that uncertainty regarding illness course and clinician beliefs around appropriate treatments affect the timing of advance care planning conversations. Similarly, prior research showed that physician uncertainty related to illness trajectory, prognosis, clinician roles and lack of a routinized advance care planning process in clinical settings are barriers to implementation efforts aimed at increasing advance care planning.12,25,26 These factors can prevent appropriate timing of advance care planning.12 Advance care planning has been shown to be delayed until the very end of life for both patients with cancer and those undergoing hemodialysis.27 This is especially problematic, as patients may receive limited benefit from care services such as hospice care.

Exploration of the advance care planning process across clinical settings highlights the opportunity for intervention studies aimed at establishing an appropriate and clinically relevant process to reduce practice variability and optimize advance care planning. Quality-improvement methods applied at both the micro- and macrosystem level that consider local processes, gaps and barriers can help in developing a consistent, comprehensive process.28 It may be feasible to engage clinical teams in simple quality-improvement exercises in order to establish current advance care planning practice and ideal practice, and to determine changes and role clarifications necessary to fill the gaps between the two.

Reducing variation in contextual processes cannot be done through written procedure alone. Adopting simple conversation guides and tools can help clinicians expand the focus of advance care planning conversations to better encompass patient values and quality-of-life considerations.29 The Serious Illness Conversation Program can assist clinicians in framing discussions to elicit patient values,30 as training physicians in communication around advance care planning has been shown to improve engagement.30 The Respecting Choices program is an example of a facilitator-led process.31 Such programs can be adapted to the disease context.

### Limitations

The potential representativeness of perspectives in this study was limited by inclusion of English-speaking participants only, our cancer population included only patients with hematologic disorders, and the patients were identified by nurse managers and thus may not be fully representative of patients in each clinical context. Our finding that advance care planning is driven by clinician perceptions of disease burden suggests that, in making this determination, patient input is not necessarily sought. We did not explore whether patient perception of disease burden also influences how older adults relate to advance care planning, but this has been confirmed by prior work.2,7

### Conclusion

Considerable variability existed in advance care planning process between and within clinical settings. As a result, health care providers’ perceptions of context-specific considerations drive the timing and content of advance care planning discussions. A focus on routinizing advance care planning may help to decrease practice variability and ensure timely and ongoing advance care planning across clinical settings.

## Footnotes

*   **Competing interests:** Jessica Simon is a physician consultant, Advance Care Planning and Goals of Care, Alberta Health Services, Calgary Zone. From 2014 to 2019, she had grant support from Alberta Innovates, the Canadian Institutes of Health Research, the Canadian Frailty Network and Alberta Health. Jayna Holroyd-Leduc is an associate editor for *CMAJ Open* and was not involved in the editorial decision-making process for this article. No other competing interests were declared.

*   This article has been peer reviewed.

*   **Contributors:** Jessica Simon, Shelley Raffin Bouchal, Lauren Hutchison and Marta Shaw conceptualized and designed the project. Lauren Hutchison, Reanne Booker and Marta Shaw acquired the data. Jessica Simon, Jayna Holroyd-Leduc, Shelley Raffin Bouchal, Lauren Hutchison, Reanne Booker, Deborah White and Marta Shaw analyzed and interpreted the data. Marta Shaw drafted the manuscript, with assistance from Jessica Simon, Jayna Holroyd-Leduc, Shelley Raffin Bouchal, Reanne Booker, Lauren Hutchison, Andrew Grant and Deborah White. Jessica Simon, Jayna Holroyd-Leduc, Deborah White and Andrew Grant revised the manuscript critically for important intellectual content. All of the authors approved the final version to be published and agreed to be accountable for all aspects of the work.

*   **Supplemental information:** For reviewer comments and the original submission of this manuscript, please see [www.cmajopen.ca/content/8/1/E9/suppl/DC1](http://www.cmajopen.ca/content/8/1/E9/suppl/DC1).

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