Nix the word caregiver

Abstract

My late husband was on home hemodialysis for 25 years, but I was definitely not his caregiver. Rather, he and I were care partners. While some may think the distinction is a trivial issue of semantics, I would argue that the difference goes to the very heart of how renal care is delivered. I regularly attend conferences pertaining to kidney disease and dialysis. Although I am heartened by the slowly increasing inclusion of patients and family members as presenters at these meetings, I still hear caregiver used over and over to describe both health professionals and family members. Immediately, I get a mental snapshot of a helpless, sickly looking person being waited on hand and foot by a subservient drudge. The word caregiver seems to suggest a one-sided relationship—all give, no take. One person puts forth all the effort, and the other passively soaks it all up. For my husband and me, nothing could be further from the truth. On the other hand, the word partner implies equality, mutual respect, trust, and shared decision making. So, maybe now is the time to re-evaluate the roles of the dialysis patient's care partners and to stop using the antiquated caregiver term. The most obvious care partners are the health professionals. Too often though, the trained professional assumes the “I know best because I have the medical/nursing education” attitude. Admittedly, I have been guilty of this on occasion. The result for the patient is perceived disability and learned helplessness. The dialysis experience must become a shared partnership between health provider and the patient and family. Patient education must be interactive and relevant with all parties listening to each other and acknowledging each other's unique area of expertise. Patients and professionals must not be adversaries with an unscalable wall between them. Instead, they should be allies in seeking optimal quality of life and rehabilitation for the patient. As in our case, most often the role of care partner includes a spouse. “What time should we dialyze today?” my husband would ask. Dialysis was one of our tasks, much like any other household duty. When I had a bad day, Jerry would give me a hug and with a simple “What happened, honey?” let me know that he was there to listen. He took care of me just as surely as I took care of him. That is partnership. Family members can be supportive partners or a negative influence. In 1980, as Jerry and I drove to Iowa City for home training, my father put his own expertise to work repeatedly driving from three hours away to convert our basement into a warm and inviting family room suitable for dialysis. My mom, the ultimate hostess, would let me know what she was cooking for our frequent visits. She somehow managed to sound honestly enthused about recipes devoid of potassium, sodium, and phosphorus. I later learned that she had a renal diet do-and-don't list squirreled away in a desk drawer. The author with her husband, Jerry, at their 25th wedding anniversary dinner dance. The role of friends as care partners cannot be underestimated. For example, I belong to a coffee group that meets six days a week, a sort of show-up-when-you're-available, unofficial support group. The unlikely bond forged by women of disparate ages, interests, and politics saw me through the inevitable frustrations of coping with chronic disease and the agony of grief. In a tongue-in-cheek moment, I once commented on a discussion board that perhaps the family pet could even be considered a care partner. After all, they accept us as we are, with all our faults and foibles. They listen to us with rapt attention. They love us unconditionally and their presence soothes us during our darkest hours. Actually, that is a pretty good blueprint for human care partners to follow! Most recently, I have been silently cheering as Drs. Tom Parker and Theodore Steinman embark on their pull-no-punches quest to have professionals look at dialysis in a whole new way, and I wholeheartedly agree with them that “we can do better.”1 The challenge, though, is for the entire community to translate that sentiment into action. The bottom line is that we are all in this pot we call kidney disease together. The Renal Support Network, Home Dialysis Central, the blog Dialysis From the Sharp End of the Needle, and RenalWeb's editor all advocate for patients to become the driving force in their care. Ultimately, using the words care partner rather than caregiver may not be terribly significant, but the concept is what matters. Only when patients are allowed and encouraged to become equal partners on the health team will outcomes actually improve.