A 79-year-old man with disabling dysarthria and hemiparesis from past strokes comes to the hospital with his family because they are concerned about his ability to live independently. He is admitted for safe disposition planning. He has lived in different settings over the last 10 years, including apartments and in long-term care, most recently leaving to reside in a hotel. He desires to return to his childhood home, uninhabited and reportedly in disrepair. His family is concerned because they believe he needs additional functional support. The patient insists he can care for himself. We were tasked with determining his capacity to make decisions about disposition planning and a return to independent living.
Capacity assessment can be challenging. Physicians are often asked to determine a patient’s ability to make medical decisions, but they are also asked to determine capacity for independent living when planning for discharge. Many clinicians lack formal training in capacity evaluation and clinicians may not recognize patients who are incapable.1 Capacity is decision- and task-specific—a patient may have capacity to make lower risk choices, but have difficulty making decisions with higher risks.2 Capacity to live independently includes components like those for medical decision-making capacity, however judgement and function (application of relevant basic Activities of Daily Living [ADLs] and Instrumental Activities of Daily Living [IADLs]) are key to independent living.2 Social history, functional and cognitive assessments, and patient values about what makes a home a home are important parts of the evaluation. Understandably, older adults with frailty and functional and/or cognitive decline grieve their former independent selves and find it difficult to accept help.
The patient is an Army Veteran and worked in a factory for 30 years after military service. He does not smoke, drink alcohol, or use recreational substances. He is divorced, with two adult children, and his sister and brother live in different states; they, with the patient, co-own their childhood home. His sister and brother wish to sell the home because it is “uninhabitable.” The patient’s daughter is his Power of Attorney and his nieces and nephews live nearby. The patient says returning to this home is the most important thing to him. He became tearful when speaking fondly about his experiences growing up there and how the home represents independence.
To support an older person’s goal to age in place, it is important to understand their functional status and if needs can be met with home and community services. Functional assessment requires collaboration with interprofessional team members such as occupational and physical therapists and social workers. Cognitive assessment is a meaningful part of the evaluation of a person’s capacity to live independently.
From 2013-20, the family observed the patient was requiring more support with ADLs, becoming more forgetful, and spending large sums of money for items he could not recall. He expressed delusions about his daughter stealing money (money used for home health services and caregivers). Neuropsychology assessments performed over this time revealed executive dysfunction and memory deficits. In 2020, the patient scored 3/5 on Mini-Cog (≥3 normal) and 6 on Short-Blessed Test (0-4 normal, 5-9 possible impairment, ≥10 impairment consistent with dementia). During the current hospitalization he scored 26/30 on the MoCA (Montreal Cognitive Assessment) (≥26 normal). Physical and occupational therapists report the patient requires assistance for several basic ADLs and all IADLs. The patient did not recognize his functional limitations and could not outline a plan for “24/7” home health services to meet his needs. His family could not provide additional support in the home.
Ultimately, we determined the patient lacked capacity to return to independent living. Nearly normal performance on cognitive testing made this determination challenging.
Discussion
In this case, aligning the patient’s care plan with What Matters (as part of Age-Friendly 4Ms care) was complicated because the patient desired to reside in a home where he could not receive the functional supports necessary to meet his goal to age in place.
It is undoubtedly disheartening for a patient if they cannot safely live independently. It can be psychologically difficult as well for the physician making this determination. We are guided by medical ethics principles to respect a patient’s agency and free will—autonomy, as well as provide compassionate care, acting in a patient’s best interest—beneficence. These two principles can clash when a patient wants to live independently but is determined unsafe to do so and the medical team must ensure safe disposition to a location where the patient does not desire to be. Despite this challenge, we can support patients and their care partners by listening to and acknowledging their feelings and hopes, and aligning a plan that offers as much choice and connection to a patient’s goals as possible. Our interprofessional team met with the patient and his daughter to review different facilities close to family with activities the patient enjoys. He and his daughter selected a location where he has been aging well for almost two years.
Capacity assessment can be complex; however, evaluation is robust when we ensure patients and care partners have all the information to make informed decisions, provide empathic listening, and collaborate with an interprofessional team.