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In their shoes: When providers become patients
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We have all been there. The patient sits across from you as you choose your words carefully. You are about to tell this person he or she has moved to stage 5 kidney disease and needs to make a decision: renal replacement therapy or medical management — no dialysis or transplant.
Ideally, you have been preparing the patient for this decision and a modality has been selected and a plan is in place.
It is never an easy moment, but consider: What if you were the patient?
We asked this question in 2017 of nephrology nurses and advanced practitioners (APs) and received some interesting responses. We again posed the question at the end of 2018 to the National Kidney Foundation-Council of Advanced Practitioners listserv and to nephrology nurses who post on the American Nephrology Nurses Association bulletin board.
It should be noted that the respondents were often personally vested in this question. A number had stage 3 to 4 kidney disease and there were several kidney transplant recipients who had their grafts from 3 years to 29 years.
In our second survey, we again received a wide range of responses (to see a discussion on modality options click here). Obviously, this is a thought not far from a nephrology provider’s mind. Unlike the 2017 cohort, some respondents said they would want in-center hemodialysis. The social support that this modality option offers was cited as a reason. Of those choosing in-center hemodialysis, most would opt for nocturnal. It was noted that nocturnal was gentler, removed more toxins and would allow the best chance of continuing daytime activities, including work. Reflecting our roles as caregivers, it was also mentioned that in-center hemodialysis would offer an opportunity to support other patients.
Proactive approach
A major concern with in-center treatment is trust. It seems we, as professionals, know too much. We do not trust the staff, yet we turn our patients over to those we would not trust to care for ourselves. As one respondent said, “I would go crazy sitting for 3 to 4 hours monitoring handwashing and dressing changes.”
Unlike many patients, nephrology nurses and APs would be proactive from the initial diagnosis and take charge. “I would do everything I could to prolong my function” was the sentiment of many. Some would opt for a pre-emptive transplant and would immediately inform family and friends of the need for a kidney donor.
Several respondents had a personal scare related to their kidneys. They took charge of their health, became more conscious of taking their medications, modifying their diets, increasing physical activity and losing weight and watching their lab values like a hawk.
If transplant were not a possibility, most would opt for a modality which allowed them the most freedom and the most “normal” life. For this reason, PD was often the first choice. Better clearance, ease of travel and independence were often cited. Unspoken, but likely important, is the control PD allows. This gets back to trust: We don’t trust for ourselves the people we allow our patients to trust with their lives.
Quality of life was a major concern. Many expressed a desire to incorporate a modality which allowed them to do what they wanted to do and live as they wanted. When this was no longer possible, some said they would, “look at the progression of kidney failure as the natural order of things.”
Age was also a determinant in the survey responses. As caregivers, we are initiating dialysis in elderly patients although we often know we are not increasing life expectancy or improving quality of life. One respondent would opt for nocturnal PD but if in her 80s, “would refuse everything and follow the light and head home.”
How many of our patients have the quality of life we demand for ourselves? Most respondents expected to carry on their lives with dialysis being incorporated into daily activities and responsibilities. We are caregivers both as nurses and APs, so it is not surprising to find that a concern for the family burden would play a big role in our decision. Many said they would continue with dialysis as long as they were not a burden to their families. They would rely on family support (and possibly a kidney donor) but would want to remain independent.
On a lighter note, fewer dietary restrictions were important in the decision process. So obviously, we are a group who enjoys eating.
On an almost daily basis, we help patients navigate the sometimes rocky and murky course of kidney disease. We encourage, educate and support. If the tables were turned, we would demand more of ourselves, our providers and our health systems than our patients know to do. Most would fiercely maintain their independence and acknowledge our caregivers might categorize us as less than “good” patients.
The decisions of treatment, dialysis or transplantation, or medical management hinged on age, family support, and practicalities — distance to unit, travel and work. No decision was made easily or quickly and most had a backup plan.
Discussion on modality options
Below are responses from the survey.
“Several years ago, I had a fall that resulted in a compression fracture of L1. Lying on the cart in the ER in severe pain, the staff told me they would get me an injection of ketorolac. In the time it took to go out, draw up the med, come back and give the injection, I decided I would develop renal failure, start with in-center hemodialysis on Tuesday-Thursday-Saturday, transition to PD, then work on a transplant. Oh, the places the mind goes when in severe pain. I knew for a fact that one injection of ketorolac would cause renal failure but that I was perfectly ok with the risk as long as it took care of the pain. Needless to say, I didn’t develop acute renal failure.” – KM
“The answer to this question today is not the same answer I would have given at the start of my career. My decision would depend on what other comorbid conditions I was dealing with at the time, what my home situation was like and what my work schedule was like. As of today, I would do PD; It fits my current lifestyle better.” – MK
“If I were younger, I would choose rigorous conservative medical management as long as I could. Then, if I went on dialysis, I would do home hemodialysis.” – JS
“My ideal would be renal replacement therapy with nocturnal hemodialysis — long hours 3 or 4 days a week at home. This would allow me to spend the most time with my family while ‘at my best.’ That’s what’s important to me: feeling well enough to live my life.” – CW
“I live more than 50 miles from the nearest hemodialysis unit. Driving several hours a week plus treatment would take 3 full days out of my week, every week. I am not willing to sacrifice my quality of life for that, so I would choose PD. If my husband were deceased and I had no family support, I would opt for medical management. Kidney disease is progressive (I am currently in stage 3B) and kidney failure is the natural progression.” – BK
“If I were diagnosed with CKD stage 3, I would work with a nephrologist to preserve kidney function as long as possible. If I progressed to end stage, I would not do dialysis. I am old enough that I would be okay with bowing out ...” – KH
The editors of this column thank the nurses and APs who responded with such thoughtful and insightful answers.
- For more information:
- Jane Davis, DNP, CRNP, is a practitioner with the nephrology division of the University of Alabama at Birmingham, and a member of Nephrology News & Issues Editorial Advisory Board. Kim Zuber, PA-C, lives in St. Petersburg, Florida.
Disclosures: Davis and Zuber report no relevant financial disclosures.