Lesley Charles, MBChB, CCFP (COE)1, Jacqueline MI Torti, PhD2, Suzette Brémault-Phillips, PhD3, Bonnie Dobbs, PhD1, Peter GJ Tian, MD, MSc1, Sheny Khera, MD, MPH, CCFP (COE)1, Marjan Abbasi, MD, CCFP (COE)1, Karenn Chan, MD, MSc, CCFP (COE)1, Frances Carr, MBChB, MSc, FRCPC4, Jasneet Parmar, MBBS, MSc, MCFP (COE)11Division of Care of the Elderly, Department of Family Medicine, University of Alberta, Edmonton, AB
2The Centre for Education Research and Innovation, Schulich School of Medicine and Dentistry, Western University, London, ON
3Department of Occupational Therapy, Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, AB
4Division of Geriatric Medicine, Department of Medicine, University of Alberta, Edmonton, AB
With an ageing population, the incidence of dementia will increase, as will the number of persons requiring decision-making capacity assessments. For over 10 years, we have trained family physicians in conducting decision-making capacity assessments. Physician feedback post-training, however, has highlighted the need to integrate the decision-making capacity assessment process into the primary care context. The purpose of this study was to develop a decision-making capacity assessment clinical pathway for implementation in primary care.
A qualitative exploratory case-study design was used to obtain participants’ perspectives regarding the utility of a visual algorithm detailing a decision-making capacity assessment clinical pathway for use in primary care. Three focus groups were conducted with family physicians (n=4) and allied health professionals (n=6) in two primary care clinics in Alberta. A revised algorithm was developed based on their feedback.
In the focus groups, participants identified inconsistencies and a lack of standardization regarding decision-making capacity assessments within primary care, and provided feedback regarding a decision-making capacity assessment clinical pathway to make it more applicable to primary care. Participants described this pathway as appealing and straightforward; they also made suggestions to make it more primary care-centric. Participants indicated that the presented pathway would improve teamwork and standardization of decision-making capacity assessments within primary care.
Use of a decision-making capacity assessment clinical pathway has the potential to standardize decision-making capacity assessment processes in primary care, and support least intrusive and least restrictive patient outcomes for community-dwelling older adults.
Key words: decision-making capacity assessment, primary care, clinical pathway
Adults are presumed to be independent decision-makers in personal and financial domains. However, when a person’s decision-making capacity comes into question, as in diseases such as dementia,(1) difficulties commonly arise that affect care-coordination and health-care planning. Dementia is a complex illness with varying aetiologies and stages that present differently in each individual. As a result, there is no uniform assessment of decision-making capacity based on illness characteristics in this patient population.(2) While an individual’s decision-making capacity may begin to be affected in pre-dementia states,(1) a dementia diagnosis does not automatically infer a loss of decision-making capacity.(2–3) Similarly, while certain types of dementia and stages of the illness are associated with increased cognitive difficulty, decision-making capacity may be dependent on a person’s prior level of functioning and comorbidities associated with the illness, such as mood disorders and delirium.(2–3)
Decision-making capacity assessment (DMCA) is the assessment of a person’s ability to understand information that is relevant to making a personal decision, and ability to appreciate the reasonably foreseeable consequences of the decision.(4) A DMCA model was developed based on clinical best-practices, ethical guidelines, and legislative acts in Alberta, to facilitate determination of decision-making capacity.(4) Developed within the acute care context, this interdisciplinary model includes a DMCA process, assessment worksheets, education, training, and mentoring. While it has largely been implemented, evaluated, and refined for facility-based care (acute and continuing care),(5) family physicians have increasingly been trained on DMCAs using this approach, and training materials have been improved based on their feedback.(6) Adapting the DMCA process for the primary care setting has been identified as a need by family physicians.(6)
Primary Care Networks are the most common model of team-based primary health-care delivery in Alberta. Primary care networks are groups of doctors working collaboratively with teams of health-care professionals, such as nurses, dietitians, and pharmacists, to meet primary health-care needs in their communities. Approximately 80% of primary care physicians are registered in a primary care network.(7) Currently, there is no standardized approach to conducting DMCAs among primary health-care providers and teams in Alberta. This lack of standardization can lead to a lack of clarity, inconsistency, and inefficient use of resources. The aim of this study is to develop a DMCA clinical pathway for use in primary care settings.
A qualitative exploratory case-study design was used to document participant perspectives regarding a proposed DMCA clinical pathway and its applicability for use in primary care. This is an exploratory study to look at what would work in a primary care setting before piloting and evaluating. This exploratory approach allowed us to collect “small-scale” data to formulate our research questions and explore opportunities to examine DMCA in the primary care context.(8) A DMCA model with processes that were previously developed for use in acute care informed the study(4) and development of a visual algorithm detailing a proposed clinical pathway for DMCAs in primary care. (See Appendix A and Figure A1 for the initial Primary Care Decision-Making Capacity Assessment Clinical Pathway). Study participants were presented with the algorithm during focus groups and asked to review and offer feedback regarding its applicability and adaptability for use in primary care.
FIGURE A1 Initial Primary Care Decision-Making Capacity Assessment Clinical Pathway
Family physicians and allied health professionals working in two of thirty-five clinics associated with the Edmonton-Based Oliver Primary Care Network in Edmonton, Alberta, Canada were invited to participate in the study. The Edmonton-Based Oliver Primary Care Network is known to have the highest population of patients over the age of 70 within the Edmonton Zone and Alberta. The two Edmonton-Based Oliver Primary Care Network clinics were selected as they: (1) are connected to a Seniors’ Community Hub that serves a substantial geriatric population and has a higher frequency of need for conducting DMCAs, and (2) are academic teaching centres with health-care professionals proficient in instructing medical trainees in DMCAs processes.
Recruitment and sampling strategies were purposeful.(9) A general recruitment notice was faxed to the two Edmonton-Based Oliver Primary Care Network clinics inviting all allied health professionals to participate in the research study. Recruitment letters were also sent to family physicians identified through the primary care network’s public access website—The College of Physicians and Surgeons of Alberta website. Since the names and contact information for the allied health professionals were not available, we are not able to report on how many people refused to participate in the study. None of the participants withdrew their consent once they agreed to participate.
Feedback regarding a proposed DMCA clinical pathway for use in primary care was solicited through semi-structured, in-person focus groups conducted between August and September 2017. A focus group guide (see Appendix B), developed by the research team in consultation with primary care providers, ensured appropriateness and clarity and supported the focus group process. During each focus group, the proposed Primary Care Decision-Making Capacity Assessment Clinical Pathway (Appendix A) was presented to participants in the form of a handout. Participants were then asked to review, edit, and make notes on the pathway, and offer verbal feedback regarding ways to adapt it for use in primary care. Focus groups were audio-recorded and transcribed, field notes were collected, and participant notes were retained. No repeat focus groups were conducted as saturation was reached with the third. The graduate research assistant on the project at the time of the study, Jacqueline Torti, facilitated the focus groups and recorded field notes in the process. She is a PhD-trained researcher with strong experience in focus group methodology and had no prior relationship with the participants. The participants did not know anything about the graduate research assistant, other than the fact that she would be facilitating the focus group, and no characteristics were reported about the facilitator.
The focus groups were initially analyzed by Jacqueline Torti; then further analysis was conducted by Lesley Charles and findings reviewed by the co-authors. The transcripts, field notes, and participants’ notes were thematically analyzed following methodology outlined by Braun and Clarke.(10) This first involved reviewing all the sources of data including the focus group audio files, field notes, and participants notes to become familiar with the data, followed by the transcription of the audio files. The transcripts were not returned to the participants. There was no pre-established coding structure; rather, codes were generated from the data and themes were sought to explain the relationships between the codes. All themes were reviewed to ensure they were well-saturated to serve as themes and that there was sufficient distinction between the themes to ensure they did not overlap, in which case these themes were combined into a single theme. Once themes were finalized, they were labelled and defined and used to report on the study findings.(10) Triangulation of data sources helped to ensure the trustworthiness of the data.(11) The term triangulation refers to the practice of using multiple sources of data, or multiple approaches to analyzing data, to enhance the credibility of a research study. Emergent themes were then used to revise the Primary Care Decision-Making Capacity Assessment Clinical Pathway for future use in primary care.
Ethics approval was obtained from the Health Research Ethics Board—Health Panel (ID No. Pro00072308) at the University of Alberta.
Three in-person focus groups were conducted at a time and location convenient for participants. Four family physicians participated in one focus group; two further focus groups were held with three allied health professionals each (comprised of nurses and a medical office assistant), for a total of 10 participants. Only the participants and the facilitator were present during the focus groups. To protect participants’ confidentiality, the only personal identifiers collected were their name (which will not be used in this report) and occupation. No other participant characters were identified. Focus groups, which were conducted over the lunch hour at the clinic and time-restricted due to busy clinic schedules, were 33 to 37 min in length. Initial data collection and analysis determined that a level of analytic sufficiency was reached after the completion of the third focus group.
Decision-making capacity assessments were not frequently performed by participants in the primary care setting (Table 1). Some physicians performed informal, uncontested DMCAs; often the patient approaching them for assistance. However, participants see themselves as playing an important role in DMCA. For example, allied health professionals indicated that they were very good at identifying triggers or potential incapacity. The majority of these participants had been in practice at the clinic for a number of years and suggested that, because they have continuity with patients over a long period of time, they are able to identify subtle changes that may influence capacity.
TABLE 1 Frequency of decision-making capacity assessments in primary care
There were no current standardized practices used by primary care physicians when conducting DMCAs (Table 2). The allied health professionals reported the process of identifying a trigger and then informing the family physician of a potential issue with the patients’ decision-making capacity. In these circumstances, patients were referred to geriatrics or a designated capacity assessor. The allied health professionals within the primary care network identified that this process required working collaboratively with other members of the primary care team.
TABLE 2 Current decision-making capacity assessment practices
Since most participants did not have experience conducting DMCAs, some participants did not see the utility of the Primary Care Decision-Making Capacity Assessment Clinical Pathway (Table 3). Other participants indicated that, although they see themselves playing a limited role in the DMCA process, they felt the pathway could serve as a valuable tool to introduce the process into primary care. Some participants expressed concern that conducting DMCAs in the context of primary care may threaten the physician–patient therapeutic alliance and suggested the pathway would be more relevant to those in acute care settings.
TABLE 3 Relevance of a decision-making capacity assessment pathway
When examining the original model, participants identified several features of the pathway they deemed favourable (Table 4). The visual algorithm was attractive and allowed them to work through different scenarios with ease. The use of the green, yellow, and red colours was deemed helpful as they navigated through the pathway. It was clear to participants that green represented proceeding forward, yellow represented situations that required caution and taking the time to do some further investigating, and red represented a stop or pause in the pathway. Participants felt that the pathway did a good job of distinguishing between the different stages, including the initial assessment, in-depth assessment, and problem solving, and the more formal process to follow when capacity could not be fully assessed or resolved by less intrusive methods.
TABLE 4 Perceived strengths of the decision-making capacity assessment pathwaya
Participants also offered critiques of the pathway and provided ideas on how it could be improved (Table 5). The pathway was perceived as acute care-centric based on its terminology and the examples used. Participants suggested identifying and clarifying roles and responsibilities within the primary care team for specific components of the pathway, in addition to removing the social worker role which they deemed to be more appropriate in the acute care context. Participants suggested adding potential timeframes for which the tasks should be completed within, but understood the complexity of doing so based on the variability of the case. To remove inaccessibility of the pathway based on jargon, they suggested the removal of all acronyms as some may not be inherently familiar. Lastly, primary care health professionals identified the important role family caregivers play in the DMCA process and advocated for their inclusion in the pathway.
TABLE 5 Refinement of the decision-making capacity assessment pathway
A Primary Care Decision-Making Capacity Assessment Clinical Pathway (see Figure 1 and Appendix C) was refined based on expert opinions. Changes made to the proposed DMCA clinical pathway included adapting the language to be more primary care-centric, removing the social worker, removing acronyms, and adding the Seniors’ Community Hub.
FIGURE 1 PCN’s Care Pathway for Decision-Making Capacity Assessments
Information relevant to the use of the pathway will be integrated into the education and training materials as the pathway is implemented into primary care. These educational components include outlining clearly defined roles and responsibilities, potential timelines, and the role of family members and informal caregivers in the DMCA process.
Health-care professionals are increasingly confronted with conducting DMCAs. Although participants in this study were willing to support the use of the DMCA clinical pathway in their primary care practices, the majority of our study participants did not feel competent in this practice area. While legally all medical professionals can be involved in DMCAs, many do not have the necessary skills and training needed to perform them and, as a result, often refer patients to specialists.(3,12) Primary care providers welcomed the idea of undergoing education and training on DMCA. Some advantages to having DMCAs performed by primary care professionals include that they have the most comprehensive overview of the patient, including the patient’s current health and medical history, as well as an awareness of their cultural viewpoints and life circumstances.(3) In addition, the continuity of care provided in the primary care setting allows for a more holistic assessment, the opportunity to address risks and preserve autonomy, and access to a legal decision-maker if needed. Primary care settings also offer a more accessible and timely approach to DMCAs, compared to referral to a specialist.(3)
The use of a DMCA clinical pathway may have the capacity to help health-care professionals working within the primary care setting make better quality decisions regarding DMCAs. Since these assessments start with validating the trigger, then ensuring the patient is medically and psychiatrically stable before evaluating cognition and function to assist with problem-solving the identified issue, all health-care professionals can be involved (Figure 1). If this is done well, it decreases the need for capacity interview that can only be undertaken by physicians, psychologists, and designated capacity assessors. The involvement of primary care has the potential to result in facilitative patient-provider interactions regarding DMCA, improved documentation, and a more transparent approach. Based on a person-centred process that facilitates determination of least intrusive solutions to the loss of decision-making capacity, the DMCA clinical pathway informs risk-rebalancing and discharge planning, all of which are essential to smooth, safe, and seamless care provision.
Being able to draw on the Decision-Making Capacity Assessment Model—a pre-existing, well-developed, and tested model in acute care that is aligned with Alberta legislation—contributed to the development of the Primary Care Decision-Making Capacity Assessment Clinical Pathway. Access to inter-disciplinary teams working in the primary care network afforded a realistic perspective regarding the pathway’s utility, as well as its applicability and adaptability if it is to be effectively used in primary care.
Limitations include the fact that focus groups were held in only two academic practices, thereby limiting the generalizability of the study findings. In addition, many of the family physicians had limited exposure and knowledge of DMCAs. This lack of familiarity by family physicians is, however, representative of the primary care community at large. Additionally, the study was conducted in Alberta and decision-making acts vary by province. However, a lot of the key concepts are similar and transferable. The health-care providers only consisted of nurses and a medical office assistant. While this is representative of what is available in primary care, the absence of occupational therapists and social workers, common team members in the original DMCA model, is limiting.
Future research will involve implementing and evaluating the Primary Care Decision-Making Capacity Assessment Clinical Pathway in a primary care network pilot site. With this developmental evaluation approach, we plan to solicit feedback from primary care network physicians and allied health professionals who will be using the clinical pathway, and draw upon participant feedback for continuous practice improvement. Quality improvement tools, such as process mapping and run charts, will be used to facilitate this process.
Presently, there is no standard approach to DMCA in the primary care setting. The development of an inter-professional Primary Care Decision-Making Capacity Assessment Clinical Pathway in this setting has the ability to facilitate the DMCA process and improve the consistency of DMCAs. Implementation of the Primary Care Decision-Making Capacity Assessment Clinical Pathway into the primary care can help to ensure the quality of DMCAs and appropriate use of resources.
Funding was received from Northern Alberta Academic Family Medicine Fund, Department of Family Medicine, University of Alberta.
The authors declare that no conflicts of interest exist.
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Canadian Geriatrics Journal, Vol. 24, No. 1, March 2021