The Care Partner Role in the Home Dialysis Dyad
Merriam Webster defines a dyad as two individuals (such as husband and wife) who maintain a sociologically significant relationship. Hopefully everyone experiences someone who cares for them in their lifetime, be it a father, mother, brother, sister, partner or significant other, or any combination thereof!
But when someone starts dialysis treatment, the care partner relationship takes on a whole new meaning—and not necessarily one that supports a dyad between just two individuals. It seems to me that the relationship changes and now becomes a triad between the health care partners, the patient, and their “care partner”. Obviously any traumatic incident, including debilitating, chronic illness impacts any relationship, and one’s husband’s, wife’s, etc…role changes, possibly even including becoming a care partner (or worse, a caregiver). This is a new role that the partner may or may not want to assume; and a role the patient may or may not desire that a partner take on. People with chronic conditions need to rely heavily on their loved ones to coordinate their care, monitor medication and accompany them to appointments, but this is a family dynamic—not one in which the health care provider should be setting the boundaries and demands upon the patient and care partner.
Please don’t think that anything that what I am saying is meant to diminish in any way the valuable role that care partners play in the health and treatment of a loved one who has initiated dialysis. When someone faces a chronic and lifelong, debilitating illness, and treatment such as renal replacement therapy, the entire family unit is affected, like it or not. Resources for dealing with the stress and financial obligations of this new dynamic are needed, but in no way should the responsibilities for dealing with this disease and treatment be mandated for a care partner by your health care provider.
My objection is with the fact that—from the very moment a CKD patient initiates dialysis—there is an elephant in the room. At a time when two people should be finding their own path in how to accept and live with dialysis and its complex treatment, the health care provider, usually the clinic, insists, perhaps even demands, that the patient’s partner become a care partner. As a point of fact, only recently, under pressure from dialysis patients, have dialysis professionals moved from using the term “caregiver” to “care partner.” That one word can have huge implications and impact on a relationship.
On November 29th, 2018. Henning Sondergaard wrote a powerful blog post titled Home Dialysis – An Antidote To Learned Helplessness. He talked about the learned helplessness that is essentially forced on dialysis patients in clinics. This got me thinking: nowhere is learned helplessness more evident than in training of home dialyzors by requiring that they have a care partner learn their treatment.
In full disclosure, I have no care partner. I live alone and have a full, happy and productive life. When it became clear that I could avoid dialysis no longer, I had no intention of ever settling for a life tied to the chair. I would not be here if it were not for home dialysis, and made it clear from the beginning that I would be in charge of my care and treatment. At the time there was a requirement for a “care partner”, and I agreed to allow someone to be trained in emergency procedures.
At some point my clinic decided this was not acceptable, and ordered me to turn in my machine and report in center. I was terrified! My life literally was dependent on an archaic assumption that I could not manage my care and needed a care partner to survive—despite the fact that I had done so without incident for more than 2 years. Without a care partner, I was going to be forced to endure the helplessness of being tied to a clinic chair, not to mention the substandard dialysis treatment.
I recently attended a meeting discussing barriers to the growth and retention of home dialysis, and the number one barrier discussed was care partner burnout! How did this happen? Care partners in the room talked about how they had to quit their jobs, take care of their partner, deal with medications, etc. Even the professionals claimed that doing home dialysis would be like having a part time job. (As an aside, while these partners were continuing their amazing advocacy work, each of their partners had since passed.)
And then there were several home dialyzors in attendance who commented that, no matter what their family dynamic or relationship dyad was, they alone were responsible for their care and treatment:
One, recently married, told her husband he was absolutely not to take care of her dialysis in any way. She works two full time jobs, they travel, and she is in charge of her dialysis. His contribution is to get her and the supplies through the airports!
Another dialyzor, mother of two, works full time, travels for work and with her family, and her husband supports her—but does not partake in her treatments!
I know of several dialyzors living alone, with severe neuropathy, missing fingers and toes, who continue to take control of their treatments, involving others as little as necessary. And they were healthier and happier because of it!
Granted, not everyone can be as independent as these remarkable dialyzors. But this is what we need to strive for in home dialysis—not perpetuating the same culture of learned helplessness that permeates in center dialysis treatment.
From the very start, dialysis (and specifically home dialysis) patients are treated differently than patients witih other illnesses. A cancer patient does not have to have a care partner present to receive treatment. Someone with diabetes doesn’t have to have someone administer their insulin. I could go on…that doesn’t mean that they can’t or don’t seek help and care, but it is on the patients’ terms. And with the aging of the Baby Boomer generation, many of us are becoming carers for our parents, who may have chronically disabling diseases. I am one of those, having provided care for my 95 year old mother with dementia for 5 years. At no time did her health care team ever dictate to me what my role had to be to care for her at home. I was left to find my own way, using what resources I could find to make it work. Did I make some mistakes? Sure, but I am proud that my mother’s last years were happy ones, where she was safe and well cared for by a collaborative effort of family and staff.
A lot has been written about burnout for carers of people with chronic, debilitating disease, and I certainly respect this.1 What concerns me is that the systemic approach to the treatment of dialysis patients has taken on a pervasive and invasive policy. Although I was an effective care partner for my mother, who had dementia, as a dialysis patient, I was deemed incapable of performing my treatments without a care partner? I don’t think so.
When a dialysis patient initiates home dialysis, that partner becomes the elephant in the room. Unless there are extreme co-morbidities that would prohibit the patient from any possible participation in his/her care, the conversation and treatment should be between the patient and the clinic. It should be up to the patient to determine how much he/she would want to involve a partner, if they have one. It means that this is a choice made between two people and not two people and a clinic.
So, why might care partner burnout be the number one reason for home dialysis attrition (which I am not convinced, nor has data proven, that it is)? Because we allowed a paradigm shift to take place in the dialysis system, when clinics assumed a patriarchal role in the management of treatment by interpreting an innocuous FDA statement requiring an observer for home dialysis treatment on a specific machine to mean that all home dialyzors were required to have a care partner who is trained to do their treatments.
I firmly believe that it should be patient first, and family first—and clinic second. These are sacred rights, not to be dictated to or interfered with by a clinic directive. Partners in any relationship where one person is dealing with a chronic debilitating disease, such as ESRD, definitely need help and support throughout. What I am disputing is the way in which this support is rendered to dialyzors and their partners. Remember the old adage, two’s company, three’s a crowd.