“It-that-must-not-be-named”

Engaging patients in multimorbidity research

Multimorbidity has attracted much interest from the medical research community and has become a priority not only in research but also in care organization.⁸ The word multimorbidity is now part of the language we use with our colleagues and policy makers.⁹

In order to better inform a research program we are conducting, our team invited patients with multimorbidity to engage in a group that would meet on a monthly basis. We wanted to engage in a discussion about their experiences with the health care system and hear their opinions about some solutions that need to be considered in our research. We recruited the patients from a study conducted previously to make sure that their conditions corresponded to our definition of multimorbidity.¹⁰ Given their role and contribution to the research, we consider them co-investigators. The themes we intend to discuss over time are numerous, including patient-centred care and partnership, health literacy, accessibility to health care services, organization of primary care, continuity of care, interprofessional collaboration, self-management, and other topics of interest that might be raised by the patients.

Language barrier

The first meeting we held with the group of patients was quite enlightening. After a brief introduction about the purpose of the activities planned, a discussion about their role in the team, and an explanation of the reasons why they were selected, we engaged in a very interesting discussion on multimorbidity and about calling them multimorbid patients. Below is a reconstruction of some excerpts of conversations that were particularly interesting (names are fictive).

Helen (age 53): Don’t call me multimorbid! I’m in good health. Of course, I have to take medication and be on a strict diet but I’m a normal person living a normal life. I’m not multimorbid!

Paul (age 66): When you call me multimorbid, what I hear is that I’m going to die soon. That my body is failing me. That there is nothing that can be done for me. This is not the way I feel!

Linda (age 58): It’s the morbidity part that is doing harm. Morbidity is associated with all sorts of negative images. It resonates like death or decay. When I’m called multimorbid, I imagine parts of my body letting me down, or in a serious state of decay. And even more important, there are multiple parts affected. No, this is not what I am.

Denis (age 70): Morbid like in morbid obesity? The term really hurts. It opens to judgment by others. It is dirty and bad!

Lucy (age 64): If we are to work together, this is clearly a term that we should not use. We are here because we have something to say and to share. We don’t want to have the impression that we are judged or considered negatively. And that’s really what this term does.

After hearing all those comments, we could feel the discomfort that was associated with the term multimorbidity. We found ourselves in a situation of unintentionally hurting those whom we really wanted to help by attributing a term to them with which they had trouble. From that moment we realized that the word multimorbidity had to be banished from our conversations.

Solution

My team and I worked together with a group of patients to determine how multimorbidity should be communicated. We agreed on the following 3 important solutions.