Knowing What to do When those Questions from Families Feel Kind of Tough

When I was first starting out in my career, I had such a hard time handling myself when families asked me questions. Usually one of two things occurred: either I would freeze and have nothing to say, or I would promise the world (giving false hope where I really should not have).

Thankfully, those families showed me a lot of grace in the process, and my skills have greatly improved since then.

If you’re in the same boat I was in, here are some things I’ve learned to better navigate these conversations.

One. Be honest. Provide them with clear, concise information. Include a quick summary of the objective data you’ve collected and what that data means. Giving false hope to a question, particularly when the individual is living with a degenerative/progressive disease is only going to make the entirety of the process harder for the family and more uncomfortable for you.

Two. Honesty doesn’t have to mean negativity. I used to think that. But if a family member asks you “Will my Dad ever walk again?”, and her dad’s Parkinson’s disease has progressed to the point where he likely won’t walk much anymore, it’s okay to say that. In that same conversation, focus on the things that the Resident can do. As a for-instance, “Dad’s Parkinson’s disease has progressed to the point where working on walking just isn’t comfortable or meaningful for him anymore. But we’ve used our therapy sessions to fit him or a wheelchair that’s best for him, and he’s engaging really well in the social activities here on the unit. He seems happy, and particularly enjoys our exercise group that we hold here 3 times a week with all of the Residents”. See how using this sort of dialogue doesn’t ignore the changes in function associated with the disease? It acknowledges them while simultaneously putting the greater focus on the skills that are still strong.

Three. Continually educate yourself. If a family member asks you “Why is this happening?” or wants you to explain the specifics of a diagnosis, you need to know the answers. Continually integrate yourself into courses and research that helps you better understand the diagnoses you’re treating. This will empower you to better answer those questions.

Four. Rely on and refer to the care plan team. You as the therapist are not the only person making recommendations for this individual. I’ve had families ask me, “Are we doing the right thing in choosing long-term care for Mom?” or “Will Dad ever be able to live at home again?”. Often, I’ll give my brief recommendation, but I’ll always refer back to the care plan team (which includes the doctor, nurses, social worker, recreation department, and admissions). Individuals don’t just suddenly become long-term care Residents or spontaneously discharge from the facility (barring unforeseen circumstances). Care plan team meetings occur prior to that transition to ensure all recommendations are reviewed. And those meetings are the time to really dive into those questions, with the support of all members of the team.

Five. Remember that these questions are hard for everyone. While you may be feeling nervous to answer these questions, families are feeling nervous to ask some of these questions. It’s hard to face the effects of a progressive, incurable illness like dementia or Parkinson’s disease. Give these families grace and compassion, and you’ll likely be met with the same.