A physician I follow on social media is an incredibly talented artist. He turns medical scenarios into cartoon sketches, as if they belong in a Sunday newspaper instead of on a telephone screen.
One of his recent renderings depicted the typical ICU patient: intubated, sedated, and surrounded by machines. Standing beside the hospital bed were two individuals with captions over their heads saying, “Look at all of this! This is torture! He is suffering!” An identical image was placed by its side, the only difference being the captions overhead. This time they read, “Look at all of this! What amazing care! He’s getting everything!” The images invited almost 200 comments, ranging far and wide along the opinionated spectrum.
I have come to view most health care-related subjects through a palliative care lens, because this is what I’ve devoted so much of my professional life doing. At this point, it is built in. So my first thought after seeing the social media post was, this is a great example of how health care providers shouldn’t label a person’s quality of life.
As I began to “defend” my comment over the next week or so, it occurred to me that those who aggressively disagreed may have been experiencing a very real but not often discussed by-product of care: moral distress.
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A young boy’s face from several years ago popped into my memory, along with remnants of conversations with his mother. I also recalled the many ethics and staff support meetings I attended on their behalf, advocating for their choices. I can still hear bedside nurses sharing words such as “futile,” and “suffering.” If I am honest, they said out loud the words I couldn’t. Was I worried about these things too? Of course I was. We worry because we care.
The caveat with quality of life is the person experiencing the illness is the one who decides. With minors, parents weigh in on this. In cultures where decision-making happens as a unit, the concept of suffering may be decided by all.
Those who bear witness, health care workers especially, can be asked to perform or engage in treatments or procedures they feel are not in the patient’s best interest. Their job description can require them to inflict discomfort and therefore induce guilt. They may think the patient’s or decision-maker’s choices are harmful and feel responsible.
This doesn’t mean anything goes, though. There certainly must be lines drawn in the sand when procedures or treatments are not indicated or would cause more harm than good. This is where ethics committees and palliative care teams can be especially helpful.
The concept of moral distress is more than partnering in what we would not choose. It is a deep-seated thought, concern, or fear that we are taking part in another’s pain. Each of these instances can bruise the soul, and over time create an injury that may, if left untreated, lead to devastation and burnout.
When we stop to consider our own values as well as what we deem important, we must know that these are informed by our upbringing, social structure, worldview, politics, faith, religion, spirituality, culture, and more. A serious or life-limiting illness may shift perspectives, but in my experience core values largely stay the same. And our values influence how we approach illness as well as end-of-life.
When given the same life-limiting diagnosis and the same options, two people might choose wildly different paths. Palliative care professionals exist to ensure people have all the correct information as well as to advocate for their choices. Individual opinions of the clinician are not a factor. Truthfully, we must work diligently to keep ourselves in check lest we impose our beliefs on someone else. When another person’s values do not align with our own, seeking help from colleagues or licensed counselors can mitigate the distress.
Initiating palliative care early, before the treatment train goes too far down the track, can be a helpful indicator for patients as well as clinicians. With their training in communication techniques and advance care planning, palliative care clinicians can identify what people know about their disease as well as pinpoint what is most important to them. These conversations may lead some to forego aggressive interventions while others choose a “full steam ahead” approach. Both are correct.
Moving forward, if we question a person’s quality of life, may we remember that their life is not our own.
This essay is cited in the KevinMD record on nursing.
Amanda Dean is a palliative care nurse.
