Differing views about quality of life.

Photo by Pat Smith/Pexels

As medical care has become increasingly advanced in its ability to prolong life in the face of serious, chronic illness, it has also presented complicated challenges for both the caregivers and care-receivers alike. This holds especially true when we venture into the thorny, subjective realm of “quality of life.”

Sam was a patient with serious chronic illness and severe developmental disability who had been in and out of our pediatric ICU for many years. His most recent nine-month hospitalization had been the most frightening and uncertain thus far, and the gap between the perspectives of the medical team and Sam’s mom had became more apparent. The medical team speculated whether Sam was approaching the end of his life, while his mom asked us to continue doing all we could to maximize Sam’s physical longevity.

Unspoken questions also involved our struggle to measure what exactly comprises “enough” quality of life to justify the continued offering of health care resources. It’s an inevitable struggle with scarce resources and the monetization of quality of life, particularly with a chronically ill, severely disabled child who can feel so “other” to those of us living “normal” lives.

Parents come to our unit seeking care for children who have never experienced “quality of life” in the same ways other children have. In my most honest moments as a parent of healthy children, I realize that I hold my kids’ level of health and function as the gold standard against which I compare my patients with chronic health issues and severe disability. Because I don’t fully understand the lived experience of these patients and their families—particularly their unique joys, bonds, and the hard-wrought meaning found in a life that’s far from typical—I have been guilty of judging their experience as less desirable, or lower quality.

I struggled deeply with all of the above issues and biases in the times I was assigned to Sam over the years. As much as we may try to deny it, we health care providers are fallible people living (and trained) in a culture that values high function, outward beauty, and mutual reciprocity in relationships. It can be difficult for us to recognize the inherent value of a disabled person with low physical function and deviation from cultural beauty standards, within the apparent one-sidedness of relationships where they mostly seem to receive but not give communication and emotion.

The value of primary nursing.

In the last three months before we were able to discharge Sam home, some colleagues and I formed a small primary team of nursing for Sam and for his mom. I’m not sure what exactly motivated me to volunteer as part of this team, beyond seeing the need for consistent caregivers and being moved by a colleague’s insight into how alone Sam’s mom felt in her advocacy for her child. But I learned more and gained deeper joy and fulfillment from being a primary nurse for Sam than I would have ever expected.

  1. It was a deeply humanizing experience. As I witnessed the intimate and nuanced bond that Sam and his mother shared, I began to see something that didn’t fundamentally look all that different from the bond I share with my own children. They were very aware of each other’s presence, moved by each other’s wellness or lack thereof. Put simply, they loved each other, as humans do.
  2. I was able to serve as an advocate and go-between, on behalf of the patient and the medical team. For example, there are sweeping assumptions we make on both sides that “everyone knows what’s going on” just because the patient has been in our unit for so long. But the fine details, most recent updates, and inconsistencies in care are best picked up by a primary nursing team. Even thorough handoff reports cannot replace the deep familiarity and insight that primary nurses develop regarding their patient.
  3. Primary nursing can nurture the patient’s and family’s trust with their health care team. Despite Sam’s multiple admissions to our unit over the years, his mom remained the only caregiver who truly knew her child, with staff coming and going as they were assigned. Once she had nurses who were consistently devoted to Sam, she finally felt she could leave the room or even the hospital for relatively longer periods to take care of personal business. She knew I cared for Sam not just as “any child” but as her child. I was more familiar with what Sam’s facial expressions and bodily movements were indicating and with specific ways to keep Sam comfortable. The relationship with the medical team became less of a power struggle, and more of a partnership.

Toward a more empathetic standard of care.

Looking back on this time, I am glad that we provided a steady presence for Sam’s mom during this sometimes heart-wrenching stay. In the hardest moments, we didn’t know which way things would go for Sam, but his mom always had the assurance that we would continue walking with both of them on this journey. Opening myself up to a closer professional relationship with Sam and his mom refined my biases and prejudices. This in turn has allowed me to provide a more empathetic standard of care that I believe has been healing for all parties involved.