Guest post by Elizabeth C. Mohler, Ph.D Student in Occupational Science at Western University.
I recently came across an article in the Walrus titled: "When Is a Senior No Longer Capable of Making Their Own Decisions?" The article outlined what is involved in a capacity assessment, who is authorized to provide said assessments, illustrated narratives of individuals who were assessed, and the consequences associated with the assessment’s results. Capacity Assessment is the formal assessment of a person's mental capacity to make decisions about property and personal care. Under the Substitute Decisions Act, many situations require capacity assessments to be conducted by specially qualified assessors who must follow specific guidelines.
This article really made me stop and reflect on the complexity of consent, and the ways in which capacity can fluctuate and change. The below article raises a lot of important questions around autonomy, agency, and who determines capacity. Although the Walrus article discusses issues around consent and capacity for older adults, questions around individual autonomy and ability to make one’s own decisions can also apply to disabled individuals.
As someone with a disability, I live in fear that if admitted to hospital, a healthcare provider may deem me incompetent based on my disability. This, on the surface, may seem unlikely, but my lived, academic, and professional experience have shown me that assumptions surrounding the capabilities of persons with disabilities are often inaccurate and misguided (Abbot, 2003).
Further, many of the assessments used to assess capacity do not account for specific types of disabilities. For example, the Montreal Cognitive Assessment, in which the subject is asked to draw a clock face, could present difficulties for someone with a visual disability, even if that visual disability has nothing to do with the person’s cognition. Another such example is the Mini-Mental State Examination. In this evaluation, seniors are asked the month and the season. They are asked to spell "world" backward and forward. If one was dyslexic, spelling "world" forwards could present a challenge, let alone backwards! While the MoCA and MMSE are tools designed to assess cognition and not necessarily capacity, test results indicating "compromised cognition" tell an incomplete story about that person; a story on paper that could jeopardize that person’s right to have agency in real life.
It is important to keep in mind that capacity assessments may be triggered for a range of reasons, including cognitive decline after experiencing illness, or disability during an episode in hospital (Hermant, 2016). Families may unrealistically hope that a capacity assessment will somehow solve difficult practical or ethical issues. Some parents of young adults with developmental disabilities may incorrectly believe that guardianship is a necessary and inevitable next step as their child nears adulthood (Hermant, 2016). Professionals may also misunderstand what can be achieved through a capacity assessment process and may conflate disability with lack of capacity. Capacity is typically described as a person being able to understand the information relevant to making the decision at hand and appreciate that their decisions or indecision may impact themselves or others (Hermant, 2016).
Our healthcare system is fraught with paternalistic attitudes surrounding the capabilities of people with disabilities. The systemic ableism that exists in healthcare can, in part, result in people being prematurely placed in long-term care homes, especially those who have disabilities (Mohler, 2020; Hermant, 2016). Healthcare providers have little knowledge about alternatives to long-term care such as microboards, direct funded attendant services, supportive housing, and co-housing.
In healthcare and social services settings, where the emphasis is all-too-often on a custodial approach to "do what is best" for an individual, little consideration is given to the dignity of risk, nor the right each of us has to take risks (Marsh & Kelly, 2018). Dignity of risk refers to the concept of affording a person the right (or dignity) to take reasonable risks, and that the impeding of this right can suffocate personal growth, self-esteem and the overall quality of life (Marsh & Kelly, 2018; Ibrahim & Davis, 2013).
The term ‘dignity of risk’, first coined in 1972 by Robert Perske in relation to people living with disabilities, was a reaction to over-protective safeguards and a paternalistic nature witnessed in care living, which they argued, was patronising and diminished a person’s freedoms and self-esteem. Rather than thinking about how to avoid all risks, we should be thinking about how we can support someone to do what they want, safely (Keast 2016). Canadian, UK and Australian mental capacity acts and laws all have three principles in common. These principles demonstrate a similar understanding of the issue of decision making and capture the concept of the dignity of risk:
- Adults have the right to make their own decisions, and to be assumed to have capacity to do so unless shown otherwise.
- Capacity should be viewed as decision-specific.
- Adults should be offered all reasonable support and assistance in making and following through on decisions before others step in to make decisions for them (Marsh & Kelly, 2018).
Even if an individual has been deemed “medically incapable”, they should be supported, as much as possible, to preserve this dignity of risk. A healthcare provider’s role could include ensuring a client’s decision is an informed one, by offering them all relevant information, and then maintaining support, whatever the outcome. As an alternative to completely removing an individual's autonomy when deemed incapable, what about considering a supported approach to decision-making – one that allows the individual to make decisions alongside advocates and support persons? This approach not only enables the individual to feel more in control of their own life but affords the individual an opportunity to explore, in a safe space, the risks and benefits associated with each decision (Durocher, Gibson, & Rappolt, 2017; Marsh & Kelly, 2018).
There seems to be little interplay between health and social services, with the former lagging in the adoption of personalized individualized approaches. One such approach that has been posited is the concept of a ‘microboard’. With more than 1,200 microboards in Canada, I know of none supporting seniors living with a disability with personalized funding (Spalding, Watkins, & Williams, 2006). In order to achieve a shift towards shared decision-making, older adults and those with disabilities need to be encouraged and supported to take the lead in creating and managing structures to support them on their terms, as they age. This should be done with the cooperation of offspring or other trusted persons to serve as directors of a trust or microboard (Microboards Ontario, 2019).
Significant benefits can be gained from improving understandings of capacity that involve individuals in shared decision-making. Benefits can also be gained from teaching medical and allied healthcare providers that a shift away from the clinical approach to capacity − limiting people’s choices – and a focus on exploring options for allowing safe risk-taking or implementing workplace/institutional policies that foster and support positive risk-taking would be a step in the right direction.
Footnotes:
1. Microboards are a type of self-directed support organization, which help individuals to express their hopes and dreams and work with others to design individualized and customized supports that are aligned with their personal vision of the future. Direct funded attendant services refer to funding that is paid directly to the consumer to recruit, hire, and train their own personal support attendants.
2. Co-housing is a type of collaborative housing in which residents actively participate in the design and operation of their own community. This community may exist in a single home, on a shared piece of land, in an urban neighborhood, or in a cluster of houses.
References
Abbot, Q. (2003). The real sin is separation. Journal of Religion, Disability and Health, 7(1–2), 159–163.
Co-Housing and Intentional Community. (2020). Retrieved from www.cohousing.org.
Durocher, E., Gibson, B. E., & Rappolt, S. (2017). Mediators of marginalisation in discharge planning with older adults. Ageing and Society, 37(9), 1747-1769.
Hermant, N. (2015). Dignity of Risk: Elderly should be allowed to do ‘risky’ activities to improve lifestyle. Retrieved https://www.abc.net.au/news/2015-11-22/risky-activities-could-improve-quality-of-life-for-elderly/6939166.
Ibrahim, J. E., & Davis, M.-C. (2013). Impediments to applying the ‘dignity of risk’ principle in residential aged care services. Australasian Journal on Ageing, 32(3), 188–193.
Keast, J. (2016). A balancing act: dignity of risk vs. duty of care’, in Australian Ageing Agenda. Retrieved https://www.australianageingagenda.com.au/2016/05/11/balancing-act-dignity-risk-vs-duty-care/.
Marsh, P., & Kelly, L. (2018). Dignity of risk in the community: A review of and reflections on the literature. Health, Risk & Society, 20(5-6), 297-311. doi:10.1080/13698575.2018.1519115.
Microboards Ontario. (2019). Microboards Ontario. Microboards Ontario. Retrieved from https://www.microboardsontario.com/.
Mohler, E. (2020). Experiencing Healthcare Through a Disability Lens [PowerPoint slides]. Retrieved from https://lnkd.in/g_jXM5b 
Perske, R. (1972). The dignity of risk and the mentally retarded. Mental Retardation. 10, (1) 24–27. https://www.ncbi.nlm.nih.gov/pubmed/5059995.
Riley, S. (2020). When Is a Senior No Longer Capable of Making Their Own Decisions? The Walrus. Retrieved from https://thewalrus.ca/why-arent-we-free-to-age-on-our-own-terms/
Spalding, K., Watkins, J. R., & Williams, A. P. (2006). Self-managed care programs in Canada: A report to Health Canada.