Respecting Decisions You Wouldn’t Make

By Beth Siliski, CCRN MBE 

Image courtesy of Pixabay.

As a critical care nurse in a nationally-renowned hospital, I’ve cared for a wide array of patients suffering from the world’s most complex illnesses. Of all these patients, I find that my neurological patients are the ones who stick with me for years after I last opened their medical chart. I still find myself revisiting memories of them in detail and wondering if I did the right thing in my care for them. 

In critical care, the treatment team prioritizes stabilization of acute illness or trauma via aggressive and invasive treatment interventions. In neurological patients, however, I’ve found that medical teams are hesitant to deliver intensive care if the patient will suffer permanently diminished mental capacity as a result of the illness. If it seems that the patient will never regain consciousness, the care team will often advocate for early family meetings to initiate goals of care conversations and support the health care proxy’s decision to abandon aggressive resuscitation measures. In other words, the patient’s present or aspirational level of consciousness can influence the intensive care interventions that an intensive care unit (ICU) team will pursue. 

Decision-making in treatment is made even more complex when a patient already has impaired neurological functioning prior to the onset of acute illness. Here, confusion may exist as to what constitutes an acutely altered mental state versus what the patient and family have determined to be an acceptable level of disability. The team’s propensity to recommend withdrawing care based on a presumption of what constitutes an undesirable neurological outcome would deprive the patient of what he/she might subjectively consider to be a meaningful life. In light of this, the medical team should endeavor to restore the patient to his or her highest attainable level of cognitive capacity, be that impaired in the eyes of the medical team or not. 

The Case 

I had one such patient whose acute presentation and chronic debilitation posed for me an ethically troublesome course of care. Sam* was a 40 year-old male who presented to my unit with profound sepsis following a bowel perforation. There was concern for whether there had been fecal contamination of his ventroperitoneal shunt—that is, whether his brain was in danger of becoming infected. We admitted him to the ICU, and in the following weeks Sam suffered seizures, dehiscence, and several bouts of pneumonia. He was desperately sick and developed complications at every turn. His course of treatment was not easy for even the best of us. 

Image courtesy of Pixabay.

Prior to this admission, Sam lived with residual neurological deficits following two glioblastoma resections that had taken place a decade ago. He was confined to a wheel chair and resided in a chronic nursing facility. Sam was cachectic and contracted, his left arm frequently jerking in dystonic spasms. His head, covered with an unruly mess of long, un-cut hair, was perennially cocked down and to the right. He had aphasia and left facial droop from his previous surgeries, meaning his speech was both limited and garbled. 

Given all of this, interpretations of Sam’s mental status were confounded by several factors at any given time. Clinicians perceived Sam’s somnolence to be characteristic of his baseline neurological function and not requiring intervention, but others wondered whether to attribute it to infection or hospital-induced sources like sedation and ICU delirium. On his good, more wakeful days, Sam grew frustrated when we didn’t understand what he said, leading him to lash out his arms and refuse necessary interventions such as administering antibiotics and repositioning him to prevent bedsores. His agitation, in turn, led many nurses to administer sedation and apply restraints in order to deliver treatment. With Sam’s vacillations between somnolence and agitation, there was never a clear window into who the person was that we were treating.

The Conundrum 

Many clinicians were daunted by this case. Much of what we were doing felt wrong, especially when Sam actively refused the interventions his wife insisted he would have wanted. A recurring question at rounds, “What are we doing here?”, was quietly asked by frustrated doctors and nurses alike. Even if we succeeded in pulling him out of the woods of mortal danger, to what end did we work? With no one willing to stake their hope on a satisfying outcome, the critical care team’s treatment discussions were abbreviated and minimal: just enough to make reluctant baby steps in Sam’s recovery. 

Image courtesy of Pixabay.

Sam’s wife stood firm on his behalf. She was insistent that, whenever they previously discussed goals of care, Sam had wanted every possible treatment pursued. To look at Sam, however, it was hard to believe he could ever participate in such conversations and much less that anyone would consent to the tortures of ICU care only to return to the limited existence of his state of health. The frustration of the care team peaked when his mother came to visit and insisted that Sam was suffering and should be allowed to die. Her frankness in challenging his wife’s assurances gave voice to the concerns we all harbored. 

It wasn’t until his son came to visit him on his birthday that I understood that Sam would have consented to all we were doing. Seeing Sam’s recognition of his son—the way his normally glazed over, distant eyes brightened up and came to focus on him—was proof enough for me that his wife spoke the truth, that Sam would in fact endure the great discomfort involved in intensive care as well as neurological impairment and disability if it meant he could see his child again. I realized that it might be “okay” to target a less than perfect outcome so long as Sam could be happy. 

Now appreciating that there was more to the man than what we saw day to day, I worried that Sam might have the capacity to refuse interventions and we just didn’t understand him well enough to recognize it. I began to involve Sam more in his care, explaining to him how turning and mouthcare would help him get better. At times I held off on interventions until he was in the mood to cooperate, and at others I bargained with him until he rolled his eyes and allowed me to proceed. 

I also began to advocate for the ICU team to treat Sam more aggressively, and I came to the team with a laundry list of interventions that I felt were needed if we were going to genuinely help him recover to his full potential. We consulted his previous neurologist to get a better grasp of Sam’s expected baseline neurological deficit. Sleep-wake cycles were reinforced with daytime activities and nightly melatonin. He received Botox injections to relieve his contractures and Restalyne injections to reduce his copious oral secretions. The occupational therapist provided a neck brace to help him hold his head straight. I was even able to coax him into a haircut. 

Sam improved… greatly. Before transferring to long-term acute care rehabilitation (versus his prior skilled nursing facility—something he now qualified for thanks to the dogged efforts of case management), his floor nurses brought him back to our ICU to visit. When I heard he was outside in our waiting room, I rushed out to greet him in eager anticipation. I found before me a different person, with bright, engaged eyes and a wide toothy smile. 

Conclusion

Image courtesy of Pixabay.

While Sam’s case ended in a satisfying way, it pains me to think of the guilt and trauma we inflicted upon Sam's wife in questioning her choices, and I wonder if, in a broader sense, we failed both her and Sam. As a bedside nurse engaged in ethics, the visceral distress involved in cases like this chip away at my moral reserve to continue delivering care. I was disappointed in myself for having treated Sam differently and for having presumed to think that no one would consent to suffer through the tortures of ICU care to return to life with less than perfect neurological function. 

When it comes to delivering ICU care, it's easy for bedside clinicians to think of the neurologically

impaired patient as an unwitting participant in inhumane suffering. However, clinicians need to be mindful of the choices that the patient and their family have made to the current point. In questions of acceptable neurological outcomes, clinical ethicists should be engaged early to help those at the bedside to identify potential biases against care and to guide treatment that is in line with patient preference. In retrospect, I believe that preemptive clinical ethics support would have achieved early elucidation of Sam’s goals for the coordination of his care as well as mitigated levels of moral distress for both clinicians and family. 

*Patient details have been modified to maintain patient confidentiality and privacy.

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Elizabeth Siliski worked as a Surgical ICU nurse at Massachusetts General Hospital for six years before transitioning to travel nursing this year. She received her BS in Neuroscience and Behavioral Biology from Emory University (‘07) and her accelerated BSN from the MGH Institute of Health Professions. She recently completed her master of bioethics degree at Harvard Medical School, where she served as student editor for the HMS Bioethics Journal.

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Siliski, S. (2019). Respecting Decisions You Wouldn’t Make. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2019/03/respecting-decisions-you-wouldnt-make_26.html