The Patient’s Spouse

Individualized plans of care. We live and breathe the notion that people should be involved in their care. One challenge is that there is always too much to do and the expectations of our workday do not always align with the ability to take the time. This is a plea to take the time, even when it is inconvenient, because there is a cost to missing the mark.  

Inconvenient may be an understatement. We have all encountered that family member. Often it is the patient’s spouse. They have too many questions, they don’t understand, they interrupt our plan for the session. We smile, redirect, and do what we can to focus on our objective; getting your family member more independent, safer, HOME. Evaluate, treat, and then move on to the next person is often what we are pushed to do given the demands of productivity and shrinking resources. There is typically no overt desire to push families into the metaphorical corner, but sometimes there is literally no other way to survive. Simultaneously, we have patient/family centered care. I remember the corporate directives well- Writing goals with the client during the session saves you documentation time and keeps them involved in their care. Perfect. Perfect? 

Person-centered care (PCC) is bolstered by interprofessional collaboration (McLaney et al., 2022). Including the whole person often includes the family, even when it is messy. This still leaves us with too many patients and too much to do. It isn’t easy and after many years in healthcare operations, I still don’t have the answer. I am not sure there is one. What I do know is the personal cost of when we don’t engage with the patient and family; I was that spouse. 

Let’s face it, speech-language pathologists in healthcare have a unique skillset when it comes to navigating the system. Following 25+ years in hospitals and post-acute settings my healthcare literacy was off the charts and when it came to managing rehabilitation, game over. So, when my husband needed Day Rehab after a stroke, I knew what to do. We went and toured. We met with the Program Director. I confirmed the physical and occupational therapy orders had been received. Insurance co-pays were less than ideal but we could manage. I mentioned there was no change in speech, language, swallowing, or cognition, after all, I had been evaluating him every minute of every day since the stroke. That said, if the therapists had a concern, we were open to the discussion. We knew my husband would test poorly on memory with a history of traumatic brain injury and a longstanding history of test anxiety. We also knew he compensated every day and had no functional impairments. We were set.  

We weren’t set. Late on a Friday I received a voicemail that the shuttle would pick him up early for therapy on Monday for a speech evaluation. There had been no discussion with either of us as had been requested. There was no time to call to clarify or cancel. Deep in my mindwas not wanting to be that spouse. So, the evaluation happened with the expected results. Clinical deficits without functional impairment; no treatment. Here is what else happened. We lost trust. We felt invisible and disrespected. We paid out of pocket for more expenses, despite our good insurance. My husband felt “less than” and his performance on some test unraveled what was left of his already diminished confidence during this recovery. It wasn’t just a test.  

My clinical brain sees that it was a good plan, given their concerns. Better safe than sorry is understandable; implementation was lacking. Was a family discussion all that much to ask for? Would the recommendation been the same had we been asked to go into greater detail? I say we because, for a variety of reasons, patients aren’t always the greatest about advocating for themselves. That spouse isn’t always there to create pitfalls. Sometimes they have insights into the larger picture of supporting the person in their care and balancing rehab with their life. These are not separate entities.  

Integrating the patient and their advocates is a critical element of interprofessional collaboration. Please continue to use us in creating plans for us, even when it is difficult. That spouse is likely hanging on by a thread and needs you. And, when they can’t articulate things well or ask extra questions, remember they are doing their best…just like you. Perhaps they are you. I was.  

With the utmost respect for all we must do, each and every day… 
That spouse 

McLaney, E., Morassaei, S., Hughes, L., Davies, R., Campbell, M., Di Prospero, L. (2022). A framework for interprofessional team collaboration in a hospital setting: Advancing team competencies and behaviours. Healthcare Management Forum, 35(2),112-117. https://doi.org/10.1177/08404704211063584