How international experts would define advance care planning: a content analysis

Introduction

Considering a growing number of patients with chronic disease worldwide (1), advance care planning (ACP) is gaining relevance (2). The coronavirus disease 2019 (COVID-19) pandemic has reinforced the urgency for the pressing concern to clarify individual treatment goals, (un)acceptable outcomes and concrete preferences such as regarding mechanical ventilation in frail or chronically ill people; it has resulted in planning for future care being re-imaged in a broader light (3-5).

Traditionally, stating preferences for future care in critical medical situations has been understood as writing down these preferences in eligible legal documents, i.e., advance directives (6). From 1994, leaders in the field increasingly used the term “advance care planning” to describe a new notion where planning for future care is understood primarily as a process of communication, with written advance directives as “only one component of the broader activity of ACP” (7,8), as a process that “may involve the preparation of a written advance directive” (9), as a “cornerstone” of the process (10) or as “one piece of information to be used at the time of decision making” (8). Since then, there has been a paradigm shift from a “legal transactional approach” to “a communications approach”, to help honor patients medical wishes over the life course (6,11) and avoid risking a “set it and forget it” mentality (12). Adopting a person-centered or relationship-centered perspective and elements of shared-decision making, ACP is considered to be an ongoing process of communication, a continuum of care planning which may refer to periods of years rather than being confined just to the end of life (11,13,14).

There may be cultural differences in what aspects of ACP are emphasized, such as family playing an important role in Asian countries (2,15). In Western countries and non-Western countries, research is accumulating that ACP is effective to some extent (16,17). However, there is heterogeneity as to how exactly ACP is being defined and what it should contain or consist of. This is complicated by, ACP in and of itself having various explicit and underlying goals, not limited to achieving goal-concordant care but also relationship-focused goals (18). Moreover, there are highly heterogeneous models of ACP practices across the globe. Physicians often lead ACP conversations and are usually responsible for treatment, with a role for non-physician ACP facilitators being common in English-speaking countries but few nurses perceiving such role in, for example, Asian countries (19) or when specialized physicians are on the staff of nursing homes (20). Roles and perceptions of non-physicians on ACP might differ from those of physicians. Therefore, we aimed to examine how individual international experts currently define ACP and whether this differs between physicians and other professionals.

Methods

Study design

This explorative study was embedded in the first round of a Delphi study (2021–2022) on ACP in dementia conducted by the European Association for Palliative Care (EAPC) (21,22) registered at the World Health Organization Clinical Trial Registry Platform (NL9720; 7 September 2021). The study was conducted in accordance with the Declaration of Helsinki (as revised in 2013). The Medical Ethics Committee Leiden-Den Haag-Delft reviewed the study protocol (23) and declared the study was exempt from the Dutch Medical Research Involving Human Subjects Act (WMO) on 2 September 2021 (reference N21.105). Informed consent was obtained from all individual participants.

Population

We purposively identified potential candidates for a panel with variation in medical vs. non-medical professions and geographical area [details on sampling can be found elsewhere as a supplement (22)]. Individuals self-identified they were an English-speaking expert in ACP in persons with dementia, ACP in persons with other diseases or in general without necessarily requiring expertise in ACP in dementia specifically, or in an expert in dementia care. Their expertise included expertise based on research, clinical practice and policy. The panel was recruited by an international taskforce installed by the EAPC. Potential candidates were sought from the taskforce networks including national and international organizations, conferences and research, groups for dementia care, and for palliative care. Because the majority of identified candidates was from Western countries, we next reviewed the list of expert panelists in previous Delphi studies on ACP and on palliative care in dementia, and from dementia-related organizations’ websites. Finally, we searched PubMed targeting authors from Africa, Asia other than Japan, and the South and Central Americas (22). Potential candidates were sent an invitation email with a link to an information letter and a consent form for download. Participants then consented by marking a box on the introductory pages of the first survey. For non-responders, we sent a maximum of two reminders.

Data collection

Data was collected in online surveys with the first round which was open between 30 September and 22 October 2021. Because we deemed understanding how the panel would frame ACP relevant to begin with, in the first survey, at baseline and prior to completing any other Delphi study items and without any prompts, and without any subsequent feedback or consensus procedures, the participants were asked: “How would you define ACP in general, in one sentence, off the top of your head?”. Participants were allowed ample room for responses of up to 4,196 characters allowing for an extremely long sentence if participants felt this was needed. They were also asked what ACP is called in their country. If participants from the same country provided different terms for ACP, we reached out to EAPC member organizations and members in those countries and our networks in other countries to confirm ACP terms. We also collected participants’ characteristics including age, gender, county of origin, and professional background.

Data analysis

We used content analysis of the responses and created codes and categories using inductive open coding and the constant comparison method (24). All answers were labeled independently by two researchers in Excel software (authors E.J.d.W., intern and medical resident, and M.V., postdoctoral fellow in communication sciences, both with an understanding of ACP from the literature) with consensus meetings after every 20 definitions (four meetings in total). First, responses were divided into meaningful text and labeled with a code representing the meaning, a synonym, or conjugated form of the words. This resulted in a code tree. Final codes were linked to categories (authors E.J.d.W., M.V., J.T.v.d.S., PhD methodologist and ACP researcher). We omitted categories that held a single code and were deemed irrelevant to ACP.

Next, we analyzed the perspective from which the participants defined ACP, including from the patient, the healthcare professional, or a neutral (no particular) perspective. This was determined in four consensus meetings by authors E.J.d.W. and M.V. independently. The perspective was assigned by evaluating the main verb (e.g., ‘guiding’, this was labeled as a professional’s perspective whereas ‘choosing’ was labeled a patient perspective). When the verb was unrelatable to either perspective, we assigned a neutral perspective. The content analysis was imported from Excel after transposing ID and data, and verified in SPSS software (IBM version 28.0.1.0, 2021) by J.T.v.d.S. before merging into a single dataset linked to participants’ characteristics.

We described the text data in terms of word counts as a potential indicator of the richness of the experts’ responses and to verify whether its length differed between native and non-native English speakers, and between physician and non-physicians. We compared definition categories between physicians vs. non-physicians using Chi-square tests. We also compared the perspective patterns in these subgroups, using the hierarchical gamma statistics with responses ordered patient, neutral, healthcare perspective. The analysis by profession was part of the analytic plan of the protocol of the original Delphi study (23) and relevant to this embedded study. We have attempted to also explore whether the definition categories and perspectives differed by experts from different continents, Western countries and non-Western countries subgroups not part of the original protocol. No specific patterns emerged, but we refrained from further analyses and reporting because we deemed the subgroups too small for meaningful interpretation of differences. We verified whether length of the provided definitions differed for the professional subgroups, comparing word count with an independent t-test because possible differences between subgroups in length could necessitate adjustment of the comparisons of frequencies of categories for length of the provided definitions. The analyses were inductive and explorative (without a priori hypotheses). We adjusted for multiple comparisons and set the level of significance to P<0.01.

Results

Participant characteristics

The response rate of the Delphi study was 63% (107/169) (21,22). Eighty-seven of the 107 expert participants (81%) from 30 countries provided an ACP definition; for 54%, English was not a national language, and also 54% lived in Europe. Mean age was 51 [standard deviation (SD): 12] years; 66% were women; 47% were physicians (Table 1). Most (60%) had expertise in ACP in dementia, 32% in ACP in persons with other diseases, and 8% had dementia care expertise.

The ACP terms, descriptives and perspectives

Table 2 presents 17 examples of terms used for ACP in English and non-English speaking countries. A mean number of 27 (SD: 14, range 4–75) words was used to define ACP excluding lead words such as “ACP is ...” [English-speaking country mean 26 (SD: 12); non-English speaking country mean 27 (SD: 15)]. Forty-five percent of participants defined ACP from the patient perspective, 26% from the healthcare professional perspective, and 29% from a neutral perspective (Table 1).

ACP definition categories

We identified 131 codes (Figure 1). Table 3 shows example definitions provided by respondents and the categories assigned of a total of 19 definitional categories (Table 4).

Figure 1 From advance care planning codes to categories. ^†, categories are listed in order of frequency. Category names represent the combined codes in that category. For example, the category “Care and treatment [2]” covers care codes and treatment codes including medical care and treatment; participants may have mentioned care and/or treatment individually or both. In particular, care-related and care values was referred to 59 times, treatment and therapy 24 times, and medical care 15 times. ACP, advance care planning.

Five categories that appeared in at least half of the definitions were: ‘Choosing between options’ (80%); ‘Care and treatment’ (78%); ‘Planning for the future’ (71%); ‘Individual person’ (68%); and ‘Having conversations’ (55%) (Figure 1). All but one definition comprised one or more of these top-five categories; one expert who defined ACP without any of these five categories defined it as “a process that supports people at any stage of health in the end-of-life”.

Further, between half and a quarter of experts referred to the categories of ‘Process’ (43%) and ‘(Losing) capacity’ (37%), ‘(Declining) health’ (29%) and ‘Meaning of life’ (28%) (Table 4). Less than a quarter of participants contributed to categories such as ‘Documenting’ (24%) and ‘End of life’ (17%) and categories related to legal issues and other stakeholders involved. Medical care was a code that formed a small part of ‘Care and treatment’ (of 68 in this category, medical care was referred to explicitly 15 times).

Subgroups of physicians and other professionals

The definitional perspectives patterns and the content of the definitions did not differ significantly by profession except for a trend of physicians less often referring to the individual patient (56% vs. 78%; P=0.03). Also, the physicians used fewer words but the difference was not significant beyond possible indication of a trend [mean 24 (SD: 11), range: 5–51 vs. mean 29 (SD: 16), range: 4–75; P=0.05]. ‘Choosing between options’ was the most common category in both groups, but for experts who were not physicians, ‘Individual person’ ranked second while this ranked fourth in physicians, for whom ‘Care and treatment’ ranked second.

Discussion

This novel study of 87 international experts from 30 countries shows that they defined ACP most commonly in terms of choosing options, care and treatment, planning and preparation for the future for the individual patient by having conversations. Less common was a focus on ‘End of life’, ‘Documentation’ and medical issues as a small part of the category of ‘Care and treatment’. Almost half of respondents defined ACP from the patient perspective. Our findings did not appreciably differ between physicians and non-physicians.

With the evolution of ACP over time, the ACP definitions by the international panel appear to be adhering to recent consensus definitions; particularly focusing on the individual patient and on communication as a guiding principle, as well as the importance of ACP as a process over time. Capacity loss as a dichotomy does not dominate and less focus is being placed on documentation and end-of-life treatment preferences.

The current study with panelists from over 30 countries suggests globally diffusing ACP conceptualizations in terms of conversations that occur over time. Prior Delphi panels sampled from fewer countries over 7 years ago began the evolution of ACP to its current broader context (13,14). As in the prior definitions, our international expert panel recognized a possible need for documentation of medical preferences, though a focus on preparing people for lack of capacity was somewhat less prominent than in prior definitions. Further, the perspective of the patient underscored by non-physicians might indicate a movement towards a more flexible agenda of the conversations in experts with non-medical professional background.

Implications

These findings have implications for research, policy, and clinical care. Planning for future care up to around 1994 (7) had been confined to signing written forms (i.e., advance directives), and to end-of-life care. Since then, the new notion of ACP has evolved from end-of-life treatments documented in legal forms to a process based on conversations over time that enable individuals to articulate treatment preferences for health crises and issues beyond the medical domain and regardless of prognosis. Our results indicate that this evolving concept is being increasingly and consistently adopted by experts worldwide. At the same time, many questions remain, including what tasks, actions, or content constitute ACP and which professions can and should contribute to it. Future qualitative research may explore the meaning of choice in different cultures. Continued research is needed to monitor how ACP is being defined across the globe but also how this may affect research studies and outcome assessment as well as clinical programs and programs funding ACP conversations.

Strengths and limitations

The response rate was high with a panel of experts from diverse professions, English and non-English-speaking countries, and Western and non-Western countries. The experts typically provided rich data with a well-phrased definition in a single long sentence. There were some limitations. We could not include experts from all countries while there may be cultural-specific ACP conceptualizations (25). In addition, the subsequent parent Delphi study was about ACP in dementia and most of the experts had dementia expertise, potentially decreasing the generalizability of our definition findings. However, they probably considered ACP in general as requested, given that capacity was not prominent in their definitions while later on they agreed to capacity being one of three issues of particular importance in dementia (21). There was no discussion amongst the participants; a subsequent discursive exchange may have led to a change of some of the responses. Due to the sample size, we were unable to assess our findings by geographic region, but exploratory initial analyses indicated no obvious differential patterns. Finally, the majority of the sample identified as researchers. Future research may include more clinical and social care professionals who may be more naïve to the international literature on ACP, but this requires considering in more detail how differences in language, meaning and barriers may impact the result.

Conclusions

Self-reported definitions of ACP from international ACP experts from 30 countries demonstrate an evolution of planning from a sole focus of documenting preferences for end-of-life treatment to person-centered conversations to help plan for the future in a process over time and the life course, regardless of medical prognosis. Further research should monitor any stabilizing, continued or superimposed shifts in the use of ACP definitions over time, the potential effect of different professional roles collaborating in ACP, and how this may affect research studies, ACP measurement, and clinical programs.

Acknowledgments

We thank the European Association for Palliative Care (EAPC) for their support in conducting the Delphi study, and for reaching out to their members about terms for advance care planning.

Funding: This work was supported by the European Research Council (ERC) Consolidator Grant (ID 771483 to J.T.v.d.S.); the Japan Society for the Promotion of Science (No. JP22KK0258 to M.N.); Leiden University Medical Center (LUMC) Department of Public Health and Primary Care; and the National Institute on Aging, National Institutes of Health (K24AG054415 to R.L.S.).

Footnote

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-24-57/prf

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-24-57/coif). J.T.v.d.S. received a personal grant from the European Research Council (ERC) (a Consolidator Grant; ID 771483 to J.T.v.d.S.). J.T.v.d.S. and M.V. received salary support from Leiden University Medical Center for the analyses and contribution to the writing. M.N. received grant support from the Japan Society for the Promotion of Science (No. JP22KK0258 to M.N.). J.i.d.S. is current chair (unpaid) of the German Advance Care Planning Society (www.acp-d.org). R.L.S. reports receiving support from the National Institute on Aging, National Institutes of Health (K24AG054415 to R.L.S.). The other authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. The study was conducted in accordance with the Declaration of Helsinki (as revised in 2013). The study was reviewed by the Medical Ethics Committee Leiden-Den Haag-Delft and was exempt from the Dutch Medical Research Involving Human Subjects Act (WMO) on 2 September 2021 (reference N21.105). Informed consent was obtained from all individual participants.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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