|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 and
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
over the years others have picked up on my words and today the terms 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 to 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
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, or immersed.
These words aren’t negative in the way informal
caregiver is or as 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. I’m engaged in my health care. They
seem somewhat passive to me. ||Words make a difference. Remember 'death panels'?|
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 Descartes said, "I think therefore I am”. In healthcare
I act. I provide information. I ask questions. I (we) should be the center
point of all that follows. Patients and family caregivers have always been the
objects of healthcare, those whose wishes are often ignored, and those to whom
things are done. Now is our time to speak up, to act, 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.
|Social entrepreneur, family caregiver thought leader, author, speaker, advocate - 20 years ago she put a face on the issues of family caregiving when they were not recognized outside the aging community. She co-founded the National Family Caregivers Association (now Caregiver Action Network) and led the charge for recognition of family caregivers across the lifespan and as critical players in the delivery of chronic illness care. She retired from the organization in June 2013 and now run her own consultancy: Family Caregiver Advocacy, where she focuses on issues of national importance that affect the health and wellbeing of family caregivers. Ms. Mintz is currently working on the need to have family caregivers identified on medical records, their loved ones’ and their own. Quote: "Family caregivers need to be included as members of their loved ones’ care team, given the education, training, and on-going support they need to bring about better outcomes and their own health and wellbeing.|