My husband Steven has MS and he has an alphabet soup of doctors to deal with the various other conditions the MS has spawned. Our primary doctor is in a family practice that is affiliated with an ACO. Some of the others are independent providers; others part of a large delivery system. Some we’ve known for many years, but others are quite new. Regardless of the differences we usually have good care experiences.
Since being a member of The Beryl Institute I have often tried to determine what it is that makes this so and I have decided that we have a lot to do with it, how we present during office visits; the fact that I am always present; that we are clear about why we’ve come or were told to come. I carry a notebook, refer to it and take notes. We try to establish a personal rapport, be succinct in our conversation and, at least with our family doctor, use the portal frequently.
Despite these good experiences, I am rather peeved that I don’t exist in a formal way in Steven’s records. There is no listing of my being Steven’s family caregiver, in addition to his next of kin; what my work as his caregiver actually entails; how long I’ve been actively providing physical care; what my other responsibilities are, how long I have been doing this work, etc. It does not seem to occur to anyone that if something happened to me it would impact the care that I provide to Steven; that we need to be viewed as a dyad and treated as such.
Last year I had an accident that made the need for this understanding perfectly clear. I fell down the stairs and I was unable to fully continue being Steven’s caregiver for more than a month.
The September issue of Health Affairs carries my "Narrative Matters" article that recounts the experience and explores the need for a new approach to chronic illness care, one that addresses functional and social needs as well as medical ones, an approach that includes a more active role for family caregivers on care teams, care plans that reflect patient and family goals, and treating patient and caregiver as a dyad, a single unit of care, because like a double helix we are intertwined. What affects one affects the other, and visa versa.
You can read, or listen to, the article here.
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 thought leader, author, family caregiver and advocate. She is the founder of Family Caregiver Advocacy, a consultancy focused on improving care and quality of life for families living with multiple chronic conditions. She is the co-founder of the National Family Caregivers Association and was its CEO for 20 years .