Shakespeare had it wrong. If a rose were called a stinkweed, it wouldn’t smell as sweet. And if Romeo’s name had been Rosencrantz or Guildenstern, Juliet might have had a long and happy life. Names signify.
That was the message I took away from Paula Span’s recent New York Times blog “What’s In a (First) Name?” about the way health care professionals address patients. Most comments agreed that doctors, nurses, and other health care professionals should acknowledge the patient’s unique identity by using his or her preferred name. The patient is a person—the first principle of compassionate medicine.
Names also matter to the relative, partner, or friend who has major responsibilities for providing or managing that person’s health care—the family caregiver. But before you have a name, you have to exist. I’ve been professionally and personally involved in caregiving for the past 20 years. In that time many family members have told me, “I’m invisible in the hospital/nursing home/rehab facility.”
“Invisible,” that is, until it’s time for discharge, payment, or major decisions. Then the family member morphs into someone with a name, except it’s not a first name or a full name. And it’s generally not “Sweetie” or “Honey.” It’s “The Wife,” “The Daughter,” “The Son,” “The Friend.” Typecasting is a convenient way for professionals to distance themselves from the individual who is not their patient, but who makes demands on their time and attention. The relationship between family members and the patient’s health care team is ambiguous, sometimes collaborative but often full of conflict.
As The Wife for my late husband who suffered a traumatic brain injury and was left quadriplegic, I was expected to be at the service of professionals, do their bidding, fill in the service gaps, and be the passive recipient of their “teaching.” My other responsibilities and preferences counted for naught. An elderly mother, a full-time job, children and grandchildren—nothing mattered.
The category of The Wife came with certain expectations, different from those of The Husband, who was given far more leeway. Husbands were praised for just showing up, but wives were expected to do the dirty work. I suspect that the same differential exists with The Daughter and The Son. It was not that I did not want to be known as a wife; it was in fact that I wanted to be able to maintain that identity in a way that preserved and honored our long and loving marriage. The only time I remember my husband crying in the rehab facility was when a nurse berated me loudly in his presence for failing to master some medical technique on the first try. He wanted to protect me but couldn’t. By turning me into a distorted version of a wife, the nurse had taken away his identity as a husband.
Who was I? I immediately rejected the research term “informal caregiver,” which bore no relation to my demanding responsibilities. Other terms like “care partner,” “caretaker,” “support person,” or “volunteer” may work for some, but not for me. The British term is “carer,” but that is unlikely to take hold in this country. I finally acknowledged that I was a “family caregiver,” with “family” referring to who I was and “caregiving” describing what I did.
Many people do not recognize themselves as family caregivers and do not like the term. They may feel that this designation deprives them of their primary relationship to the patient or that they may become overwhelmed by responsibility, not an unrealistic fear. At the United Hospital Fund we created a Next Step in Care guide to becoming a family caregiver, which stresses the importance of self-identification in health care settings to assert one’s rights to participate in care planning and obtain appropriate and timely training. Another guide helps family caregivers rebut misinformed claims that the privacy rules under HIPAA prevent sharing information with them. Community services for family caregivers are available for those who are ready to seek them out and are willing to take on the designation for this purpose.
Being proactive is the best way to assert one’s identity and importance in the patient’s well-being and care. Just as health care professionals are supposed to introduce themselves to every patient, family caregivers should introduce themselves to everyone who plays a role in patient care. “My name is _________. I am _________’s ____________ and also his/her family caregiver. Let’s talk.” Having a name and an identity will not guarantee an effective working relationship with professionals, but it’s a good start.