Depression is a loaded word. A medical professional and a layperson often have a different understanding of its meaning. Medical professionals often categorize symptoms into neatly labeled boxes that discount many real-life factors worthy of a wider range of classification. Most doctors see depression as a “psychiatric illness” and have been taught to treat it clinically. But psychiatric illnesses can be affected by both chemical and situational stimulation and environmental stressors. In reference to a recent article in CJASN entitled, “Psychiatric Illness and Mortality in Hospitalized ESKD Dialysis Patients” by Kimmel et al. and as a former person (“patient”) with ESKD who is now over 2 years post-transplant, I believe what is missing is empathy (1).
Empathy allows medical professionals to respect the patient’s battle by seeing stimuli they often miss and a path to solutions beyond medication. Although doctors deal with their own daily stressors, they often fail to use them as critical indicators in treatment of patients with ESKD. Treating all patients with ESKD who exhibit depression and/or anxiety with the same structured psycho-pharmaceutical protocol is a disservice to present and future patients.
Granted, there are people with chemical imbalances who need to be treated with medication, but almost every patient with ESKD experiences depression at one stage or another. Acquiring a life-or-death illness and starting dialysis is a paradigm shift that alters your whole sense of identity. Each patient processes the fact they must be attached to a machine to survive differently, yet it is always gradual. From that first dialysis treatment, fear, dread, anger, worry, sorrow, and even despondency (all words associated with depression) continue to rear their ugly heads in varying intensities at unpredictable times. My first few months were filled with peaks and valleys of confusion and fear of the unknown.
The responsibility of being a patient is nonstop, and life becomes structured around doing dialysis and managing countless side effects. It spirals in a domino effect: if you still work not knowing if you’ll be fired from your job, which means possible financial instability, which can mean family instability or debt, which in turn can mean losing your health insurance. Like the branches of an “anxiety tree,” these concerns can extend at-length in several directions. Patients worry about children and familial duties or about being a burden on family, and young and old patients worry about dying. Patients must navigate eating the right food; balancing food, medication, and activity; feeling weak, nauseous, and dizzy; the list goes on. It’s not uncommon to buckle under the pressure. It’s human.
Years ago, my 55-year-old friend with ESKD, who has had 47 surgeries and tries to maintain hope although every day brings a new discouraging battle (from blood in his fistula to passing out in his car), found himself overcome by fear of the future, and as he states, “in a pit of depression.” He lives alone and did not want to be a burden on his friends or his daughter and her family in another state. As time progressed and he could not work as much or drive as often, bills piled up, and basic things like getting groceries and seeing doctors became increasingly difficult. The road got too dark to traverse. The only feasible option in his head was suicide, so he downed a bottle of pills. He survived, and when his friends and family saw he needed help, they let him know if he had only asked, they would have been there. Sometimes the proper support from family, friends, and other patients is enough to carry someone through the lows of being a patient with ESKD. He is now a patient advocate who helps other patients and does whatever he can to ensure morale and hope exist among the patients in his clinic. This is a testament to the fact that the solution is not always found through medication. It can be therapy, spiritual, or it can be a strong support group of friends, family, or empathizing strangers.
Technology was pivotal in my ESKD journey. There are many internet groups for patients with ESKD. Seeing the support and empathy shared between patients, family members, caregivers, and most importantly, survivors, made me confident and optimistic that you can experience depression and still decide to accept your fate with a positive outlook on the future. I decided on home peritoneal dialysis after reading success stories online. Younger patients with ESKD feel exacerbated resentment, sadness, and fear because they have not yet formed a full sense of self. It is paramount they connect with other people their age and get information online to educate themselves about how many patients survive and prosper, and the increasing technological innovations happening with kidney disease.
My hope is that clinicians can determine how to incorporate the whole mental, physical, and emotional picture of being a patient with ESKD, to not simply put a band-aid on a “disorder” they cannot fix, but to use empathy to further understand and effectively treat a complex lifestyle that defines thousands of people.
Ms. Couch has nothing to disclose.
1. Kimmel PL, Fwu CW, Abbott KC, Moxey-Mims MM, Mendley S, Norton JM, Eggers PW: Psychiatric illness and mortality in hospitalized ESKD dialysis patients. Clin J Am Soc Nephrol 14: 1363–1371, 2019