Some of us are numbers people; some of us are word people. I’m definitely one of the latter. Ever since I became an advocate for family caregivers over 20 years ago, I’ve been questioning the accepted terminology. It began with the terms formal and informal caregivers - formal referring to home care aides who provide services for a fee; informal referring to me and the millions of other family members/friends who provide care for a loved one and do not get paid.
My skin would bristle every time I heard the phrase. Every chance I got, I would stand up at meetings and say: "I may not be trained and I’m certainly not paid, but there is nothing informal about the care that I provide. I take it very seriously and give it my all." I am pleased to say that others have picked up on my words over the years, and, today, the term 'family caregiver' or 'family/friend caregiver' is in common practice.
There are other common terms or names in health and social policy that make my skin crawl. I will rail against them from time at time, but I haven’t made changing them a crusade, perhaps because they are part of the healthcare lexicon and I know it would be futile. Nevertheless when given the opportunity to be in front of a relevant and thoughtful audience, I can’t resist the temptation to try and make some converts to my "what we call things matters” campaign.
Ken Thorpe, the highly respected health policy professor and thought leader, relates an anecdote about his mom. When telling her about the work he was doing on medical homes, she interrupted him and said: "I’m not going to go into one of those." It’s not surprising that someone, especially a senior, would react that way. It’s a reasonable assumption that 'medical home' is synonymous with 'nursing home'.
Those who define a population or create terminology don’t often think about how it will be digested outside their own community, but they should. Words make a difference. Remember ‘death panels’.
I’ve been thinking lately about the terms ‘patient engagement’ and the ‘engaged patient’. An engagement, according to Merriam-Webster, is an appointment, an enlistment and, of course, a statement of intent to marry. To be engaged is to be absorbed, enthralled and immersed in. These words aren’t negative in the way 'informal caregiver' is, or really misleading as the term 'medical home' can be, but they still rankle. They are more about something that will happen in the future, something that I will be involved in. It’s the ‘in’ that gets to me. I’m absorbed in reading a book; I have an appointment in half an hour, my hands are immersed in water. They seem somewhat passive to me.
I act. I am active. These are direct. They are strong. The term 'patient activation' has gained prominence recently, but it is completely off the mark. Human beings can’t be activated; only robots, garage doors and military units. Check the dictionary. I did.
Rene Descarte said "I think therefore I am." In healthcare, I act. I provide information. I ask questions. I am, or should be the starting line, the center point of all that follows. Patients and family caregivers have always been the objects of healthcare, those whose wishes are often ignored; those to whom things are done. Now is our time to speak up, to act and to be part of the team. It is time for patients, families and providers to move beyond engagement. It is time for all of us to get married.
Suzanne Mintz is a social entrepreneur; thought leader; author; speaker; advocate, and change agent, who has been fighting for recognition, respect and rights for family caregivers. In 1993 she co-founded the National Family Caregivers Association and built it into the nation’s premier organization for family caregivers. She retired last summer and established the consultancy Family Caregiver Advocacy to continue her efforts. firstname.lastname@example.org