Introduction
Determining decision-making capacity is part of everyday business for health care professionals working with older adults. The question of capacity arises in relation to medical decisions (i.e. informed consent), testamentary (will-making) decisions, and financial, lifestyle, and accommodation decisions. The tests for these decisions are embodied in various guardianship, conservatorship, and administration legislation around the world (Peisah, Reference Peisah, Chiu and Shulman2017). While physicians have been traditionally called upon to assess capacity for treatment decisions (Appelbaum, Reference Appelbaum2007; Markson et al., Reference Markson, Kern, Annas and Glantz1994), there is an increasing interest in capacity assessment across a range of health care disciplines mandated by calls for assessment of guardianship needs, financial capacity, and testamentary capacity (Moye et al., Reference Moye, Marson and Edelstein2013).
An understanding of decisional capacity by health care professionals is necessary to ensure that human rights of dignity, autonomy, opportunities for supported decision-making, and safeguarding against abuse (particularly financial abuse) are respected (UNCRPD, 2018). A balance must be achieved between promoting autonomy and allowing people, regardless of disability, to make decisions they are capable of making, while protecting them from decisions they are incapable of making (O’Neill and Peisah, Reference Peisah, Chiu and Shulman2017; Peisah, Reference Peisah, Chiu and Shulman2017).
Doctors frequently report a lack of confidence in assessing capacity (Young et al., Reference Young, Douglas and Davison2018). All too often in clinical settings, the issue of capacity only arises when a patient refuses treatment (Gurian et al., Reference Gurian, Baker, Jacobson, Lagerbom and Watts1990) and clinicians often struggle with regard to their role and responsibilities in relation to capacity (Widera et al., Reference Widera, Steenpass, Marson and Sudore2011). Physician assessments of capacity have been shown to be inconsistent, subjective, and often suboptimal (Kim et al., Reference Kim2011; Marson et al., Reference Marson, McInturff, Hawkins, Bartolucci and Harrell1997; Rendina et al., Reference Rendina, Brodaty, Draper, Peisah and Brugue2009).
Gaps in knowledge and education regarding capacity assessment by health care professionals has been identified, prompting calls for improving ethical and legal literacy across a range of health care disciplines (Preston-Shoot and McKimm, Reference Preston-Shoot and McKimm2013; Young et al., Reference Young, Douglas and Davison2018). One of the constraints in developing capacity education is the significant jurisdictional variation in laws governing capacity, even within countries (Peisah, Reference Peisah, Chiu and Shulman2017; O’Neill and Peisah, Reference Peisah, Chiu and Shulman2017). However, there are many capacity and human rights principles that are universal (UNCRPD).
We aimed to develop and pilot a capacity education tool that had global application and clinical relevance to a range of disciplines. We hypothesized that a global education tool on capacity could be developed and would demonstrate knowledge translation amongst clinicians in three disparate international health care systems.
Methods
Global capacity education e-tool development
We used a modified Delphi approach (Skulmoski et al., Reference Skulmoski, Hartman and Krahn2007) to collect and distill the expert opinion of one geriatrician, one general practitioner, and four geriatric (old age) psychiatrists from Israel, Canada, and Australia with extensive experience and knowledge in capacity and/or the relevant clinical situations where issues of capacity arise. The work settings for the experts in the Delphi panel included the gamut of inpatient acute hospital settings and outpatient clinic settings, academic health care, and private practice.
Some of the questions posed in the Delphi rounds included: “In what clinical scenarios are Capacity questions commonly encountered?” or “In what clinical scenarios are clinicians commonly asked to assess capacity?” Additionally, we considered: “What types of capacity should be covered?” and “What principles of capacity assessment are applicable across all jurisdictions?”
Feedback was collated and modified to achieve an inclusive capacity “curriculum” comprising a core set of agreed upon facts and principles that formed the basis of the questions. The content covered: (i) the human rights framework for capacity, specifically the Convention on the Rights of People with Disabilities (CRPD); (ii) capacity assessment principles including the task and situation-specific nature of capacity; the presumption of capacity; and the principle that capacity is not “diagnosis bound;” (iii) the application of these principles to case scenarios involving (mainly) older patients with mental illness, dementia, or delirium relating to people living in the community, nursing home, or staying in the hospital. We addressed informed consent and treatment refusal, financial capacity, capacity for accommodation decisions, testamentary capacity, undue influence, and advance care directives.
The tool comprised: (i) 25 questions that formed the “pre-test” for the adaptive and personalized e-Learning platform; (ii) a learning module based on the participant’s response to the “pre-test”; (iii) a “post-test” (the same baseline questions) to test knowledge translation and feedback learning success. Embedded within the middle learning module are several resources including the Red Flags for Undue Influence; a link to the CRPD (United Nations Convention on the Rights of Persons with Disabilities); Assessment of Capacity with task specific approaches such as Assessment of Financial Capacity; Screening for Elder Abuse; and the “Ten Commandments of Capacity” (a summary of the basic capacity assessment principles as outlined above).
The online capabilities of the tool were developed by Smart Sparrow, an Australian adaptive e-Learning education technology company. In the pre-test, correct answers are consolidated with a brief explanation and fact confirmation in case the participant guessed the correct answer, while incorrect answers prompt an “incorrect, but please proceed” response. In this way, the middle learning module addresses only incorrect answers from the pre-test, and information is provided only for those baseline questions that the participant answered incorrectly in the pre-test. As such, the tool is “adaptive” and tailored to the individual’s knowledge and considered an optimal and efficient pedagogic learning environment (Marcus et al., Reference Marcus, Ben-Naim, Bain and Latifi2011).
Tool testing
We tested the tool using a convenience sample from Israel, Canada, and Australia (choice of these countries determined by the researchers’ contexts), with participation invited via a group email directed to the researchers’ professional networks. Participation was voluntary, and participant consent and information were embedded within the tool at the beginning of the online questionnaire with continuation predicated upon consent. Basic demographic material was collected such as specialty and years in practice.
Statistics
Differences between valid pairs of baseline and post-course test scores (out of 25) were examined using a paired samples t-test. Alpha was set at 0.05.
Ethics
The study was approved by the Sunnybrook Health Sciences Centre, University of Toronto Academic Health Sciences Network Human Subjects Research Ethics Board.
Results
The tool was tested on 31 health care professionals across Israel (8), Canada (15), and Australia (8) from a range of disciplines: Primary Care/General Practitioners (GP’s) (19), Physician/Internal Medicine (1), Palliative Care GP (2); Palliative Care Physician (2), Geriatrician (2); and one of each: Psychologist, Occupational Therapist, Psychiatrist, Aged Care Researcher, and Aged Care Pharmacist.
The median time that it took to complete the tool was 24 minutes, the median time being the most accurate reflection of time taken. Both mean time and standard deviation were skewed by outliers created by participants who did not complete the tool in one session (i.e. the longest time taken being three days and five hours, the shortest time eleven minutes).
The mean baseline pre-test score was 19.1 (S.D. = 1.61; range 15–22) and post-test score 21.7 (S.D.= 1.42; range 18–24). The mean improvement in test score was 2.55 (Standard deviation = 1.31; 95% confidence interval for the mean improvement: 2.07–3.03). The paired t-test statistic showed a very highly significant improvement in test scores: P < 0.0001; t=10.81 on 30 df. See Appendix for themes of individual items and their performance pre and post-test.
Discussion
As far as we are aware, this is the first tool to demonstrate that generic capacity principles can be taught to health care professionals from ten different disciplines, regardless of the jurisdiction. In this preliminary study, we demonstrated a statistically significant improvement in test scores after completion of the tool that took on average 25 minutes to complete, making it user friendly for a busy health care environment.
Notably, over two-thirds of the sample comprised general practitioners, and 13% of the sample were doctors with a palliative care interest, two areas of medicine where an understanding of capacity is highly relevant, yet often not recognized as such. As stated previously, decision-making permeates all health care, yet anecdotally, the complexity of some of these determinations leads to a certain “legal phobia” amongst all health care professionals.
A significant limitation of this, albeit pilot study, was the small sample size as well as the convenience nature of sampling, which meant that doctors already engaged with capacity assessment were more likely to learn from this tool. This was evidenced by the high mean baseline score of 19 out of 25 for this sample, and the small gain in knowledge of 2.6 points. On the other hand, the knowledge translation may have been underestimated as we did not exclude those with prior training, so that those with less baseline knowledge than this sample may acquire even more knowledge than demonstrated here. Also, the practical significance of the statistically significant improvement in scores demonstrated here in a cross-sectional knowledge translation is unknown. That the instrument “teaches to the test” and that comprehension is tested through a true/false format may diminish confidence that the 2.6-point improvements translate into meaningful changes in actual ability to retain and apply the acquired information. It is one thing to prove knowledge translation over half an hour, and another to demonstrate change in attitudes and, in particular, capacity assessments. Future research should include extension of this pilot testing with a larger sample size with an exploration of concrete outcomes such as these that impact upon patient care. Finally, analyses of differential efficacy of the tool amongst different disciplines or cultures was precluded by the small cell size. Future studies should examine this.
Young et al. (Reference Young, Douglas and Davison2018) have suggested that “medical education in this area is particularly urgent, given that the majority of respondents regularly encounter older patients and could recall concerns about a patient’s capacity on at least a few occasions in the previous year.” We hope that this capacity education e-tool can make some small contribution to improving the understanding of human rights and its application to capacity assessments in a global context.
Acknowledgements
This research was made possible by grants from Capacity Australia, the Lewar Chair in Geriatric Psychiatry, Canada, and the Medical Research Infrastructure and Health Services Fund of the Tel-Aviv Medical Center. The authors wish to thank Botong Cheng, Smart Sparrow for his assistance in the online development of the tool, and Dr. Allan J. Pollack for his assistance with the statistical analyses.
Conflict of interest
The tool is currently available to purchase online at https://capacityaustralia.org.au/globalcapacity. Carmelle Peisah is president of the Australian charity, Capacity Australia, a non-renumerated position.
Description of authors’ roles
Carmelle Peisah and Yaffa Lerman formulated the research questions, designed the study, carried out the study, and wrote the article. Kenneth Shulman formulated the research questions and assisted in designing the study and writing the paper. Nathan Herrmann and Jeremy Rezmovitz assisted in designing the study, recruiting subjects, and writing the paper.
Supplementary material
To view supplementary material for this article, please visit https://doi.org/10.1017/S1041610219000723
