Shared Decision Making and Adults with Intellectual and Developmental Disabilities

You check your schedule for the day and notice you have a new patient who has a history of an intellectual or developmental disability. They have been booked for a fifteen-minute appointment. Wise family physician that you are, you rationalize that you can see this patient over a few visits to understand their situation and come up with a management plan with them.

When you meet the patient and their caregiver, who is a paid employee, you learn the patient is on several medications that aren’t indicated and will need adjustment. You know that your patient has had psychoeducational assessments and has an IQ of 55-70 with an age equivalent of 9-12 years of age. You start to explain to the patient that you want to adjust some of the medications, and the rationale behind same, when the patient states “no, don’t touch any of my medications, I need them”.  You recognize there are some limitations in what the patient understands about the medications and the need to taper and ask the caregiver who the substitute decision maker is.  The caregiver shrugs.

While this scenario is not urgent, it is all too common.  Many adults with intellectual and developmental disabilities in Newfoundland and Labrador do not have an appointed substitute decision maker. When there are no living relatives, only paid caregivers present at appointments (as in the case), this can be even more difficult.    On further enquiry, the patient’s social worker advised that she did not have a substitute decision maker appointed – and that this was likely not an anomaly.  When things are “status quo” it does not tend to be an issue, but when something happens and there is need for a change in management, it may be difficult and time consuming to get a substitute decision maker in place.  For the patient’s safety and best possible care, it’s important to have that substitute decision maker identified as early as possible.

Guidelines for family physicians on how to handle situations like these are limited – however a recent publication in April, 2018 by Sullivan and Heng explored how best to support adults with intellectual and developmental disabilities in their participation of health care decision making (http://www.cfp.ca/content/64/Suppl_2/S32.long).  They specifically recommend assessing the need for accommodation and support to allow patients to participate, and that decisions should be a collaboration with the patient, caregivers, and the family physician to help promote the patient’s goals or values.  In the case above, it is important to assess why the patient does not want her medications changed and what she understands about their rationale for use.  It can be easy to fall into the trap of speaking to the caregiver and getting their opinion on the medications and approval of changes, without seeking consent from the patient themselves.

It is important that family doctors take the time to develop rapport with these patients and their caregivers, in order to appreciate the context behind their decisions.  As part of the Forest Road Clinic (for care of adults with intellectual and developmental disabilities), I am fortunate to have time built into my schedule to allow for a comprehensive assessment of the patients’ ability to make decisions.  I also have the time to track down older psychological assessments. 

There are issues, however, in relying too heavily on these psychoeducational assessments that in many cases were done when the patient was in school.  It is not necessarily a reflection of how much they can comprehend/rationalize regarding their current medical care, and this places a heavy burden on health professionals to help the patient make potentially complex medical decisions while preserving their basic human rights. I think this speaks to the importance of having an interprofessional medical clinic for care of adults with these challenges. Also – just as we cannot make assumptions that someone with a slightly lower MMSE (mini-mental status exam) can or cannot make decisions, we cannot make assumptions regarding these patients just based on an IQ alone.  As much as possible, we need to ensure we are adhering to their values while ensuring high quality health care is offered. 

Amanda Tzenov is an Assistant Professor of Family Medicine at Memorial University of Newfoundland and works with Katherine Stringer and Denise Cahill at the Forest Road Clinic (for care of adults with intellectual and developmental disabilities) which is a consult-based service in St. John’s, NL.  She also provides low-risk obstetrical care with the Family Centred Maternity Care group in St. John’s.