by Jacob Dahlke, Bioethics Program Alum (MSBioethics 2012)
*All names are false. This is my narrative surrounding a case consultation I had conducted as a part of my job as a clinical ethicist. This post will discuss the more clinical details surrounding the case. In particular it evaluates the process ‘we’ followed during the case. The thoughts and opinions are my own, and do represent those of any other health care professional, or of any institution.
We were all relieved to know that Bonnie* would die soon. I don’t say that lightly, or in jest, or in some inhuman or discompassionate sense. But we did things to her body, things that we all thought, with confidence, she did not want us to do. So when that decision was finally made, the weight of air left the room. It was a heavy air. Heavy on Jack and Alison, who had to exercise a type of patience that is so rare, for situations just like this. Heavy on Dad, whose emotions for his recently passed wife had to be paused and set aside, so that he could discuss how he was so sure that his own daughter wanted to die. And so we arrived, to the family meeting to tell the family that Bonnie’s condition had not improved, and had in some sense deteriorated. We needed a new plan for Bonnie’s care, and since we couldn’t talk to Bonnie herself about them, we went to the family. We knew what they would say. They seemed relieved when they could say it, this time with the authority they believed all along that it had: Bonnie would not want any of the present interventions, that she should be put on a comfort care plan and be allowed to pass.
Perhaps the most tragic part of this story is that her dad and Alison even found her in the first place. Dad acknowledged that to me in my first conversation with him. “What if we had been another ten minutes later? Would we even be in this situation?” he asked, slightly angry at his own instinct to rescue his own daughter and the subsequent cascade of events.
But there we were, in this cascade of events that was on an odd sort of autopilot. Known as the ‘rule of rescue’, this standard of medical practice is invoked when patients arrive to a medical facility with unknown context regarding their ability to consent to what we are about to do to them. This rule of rescue is very uncontroversially used in emergency departments. If a patient presents to the ED- unconscious and bleeding- following an auto accident, we automatically treat the person and attempt to treat the injuries without first attempting to obtain their permission. Technico-legally, we are providing justification against future potential charges of medical battery. In the absence of adequate knowledge to the contrary, our medical obligation is to provide full measures of treatment.
Suicide attempts are a bit trickier. The context of the injuries tend to be less obscure. The car accident in the above example doesn’t necessarily correlate to the patient’s wishes to accept or refuse life saving treatments, but a suicide attempt is a little clearer. It is not a logical feat to say that because Bonnie tried to end her life, she would also not anyone else to do things to keep that life going. Some suicide attempts are indeed an act of last resort for a person to get the attention and subsequent help that they need. Depression, reactive to an event or prolonged and intractable, untreated or untreated, could be a cause of the suicide attempt. The suicide attempt is instead a clinical manifestation of an underlying condition, one which has not yet been medically optimized, and therefore an injury that we are obligated to treat as well.
This slight obfuscation, though, is all it takes for suicide attempts to take a different trajectory than other treatment scenarios. Simply put, then: when a patient arrives following a suicide attempt, we aren’t sure they rationally wanted to end their life, or if this was a symptom of an underlying condition for which the patient could also be treated. The rule of rescue is applied here, then, as the window of time in which the patient is to be medically optimized.
Patients have a well established ethical principle in autonomy that ensures that a patient themselves can accept or refuse medical interventions. But in order for that to happen, we must have confidence that they can actually be in such a state as to express their autonomous choice. We call this decisional capacity. It means that the patient can understand and appreciate the proposed treatment, and that they can evaluate the risks, benefits, and alternatives, and can communicate a choice that is consistent with their values. The threshold for capacity increases with the increasing level of complexity of the medical decision. When patients lack adequate capacity to make the decision asked of them, we seek out others (known as surrogates since they are making decisions in place of another person) to make a substituted judgment, where we must ask the surrogate to make the decision as the other person would make it if he or she were able. (I must note that this is often misinterpreted as “deciding to let Mom die”, but that is for another time.)
In this case, Bonnie’s wishes, as interpreted by her family, were clear and consistent. She had written in a note prior to taking her “polypharmacy overdose” that explained why she no longer wanted to live, and requested that her family respect her decision. Her family reflected on the last few years. While she never said explicitly that she would not want to live without Mom, her actions and behaviors made it a predictable outcome. One of the first words I heard to describe Bonnie’s relationship with her mother was “dyad”. The other dominant word was “codependent”. Bonnie had little if any meaningful social structure outside of her mother. Bonnie had a negative self-image, but saw the tolerance in her mother’s relationship, which provided an insulation to anyone else possibly agreeing with her own self-critiques. While the effects of her cerebral palsy were fairly well managed, the diabetes and inability to maintain her weight caused additional problems (she classified as being morbidly obese). Her slow decline in health increased her dependence on her mother. Her mother had a correlative decline in health over the past few years, which increased her dependence on Bonnie for day-to-day tasks. The two of them were dancing each day around each other, very slowly, in a spiral of declining health. Their dance had become so intimate that the removal of either partner would result in the other falling down. This was the assertion of the family.
But our medical reply was the rule of rescue. We are obligated by the principles of beneficence (doing good- preserving life in this case) and non-maleficence (avoiding harm- potentially allowing a person to die who may not really want to) to be more confident, to pause and consider the possibility that Bonnie may have wanted to live. So pause we did. We were in the midst of the rescue event, without any clear timeline for how long it would last. The rescue event would last as long as her conditions upon admission were resolved- her pneumonia, her reliance on organ support for her lungs, and (hopefully) a psychiatry consult to evaluate possible depression. So pause we did.
Bonnie was in the ICU for over two weeks. During that time she was intubated, connected to a ventilator that was breathing for her. She had developed an aspiration pneumonia, which cleared and she appeared well enough to extubate her and removing ventilator support. Once she was extubated, she whispered, “My mom is dead”. That was all. Her breathing didn’t improve however, and had be re-intubated. She never spoke again. She developed another pneumonia. Throughout it all, she was agitated. Really, really agitated. She was restrained due to her repeated attempts to pull out her ventilator tube. She was never really “with it”, mind you; she never regained enough capacity to have an adequate conversation, although she was able to briefly follow simple “yes” and “no” commands. Her agitation declined into a delirium, a common side effect of prolonged intubations and ICU stays. It was at this point that her condition, the totality of her damaged condition, exceeded the raw benefit of establishing a psychiatric baseline. The rescue event was over. It was time to rethink her goals. It was time to have the family weigh in.
I understand the process we followed for this very challenging case. I can cognitively construct the logical course, the ethical justification, and the clinical trajectory of what I did. But what I can’t shake- not yet, at least- is that I was right all along. We were going to prolong this woman’s suffering so that we could be right. Because for us to be wrong would have meant that we violated such foundational principles of good medicine, that we allow to die a person that ought to have lived. I still struggle with that. Part of my struggle is that the process we followed, in my opinion, is flawed. I am early enough in my career to know what I don’t know, and the ethics of suicide attempts I don’t know. But in this case, which I consider a ‘standard’ case, plays out in my head as this: 1) Bonnie wanted to die. 2) Medicine got involved, and needed to be sure she really wanted to die, so she went to the ICU. 3) Her prolonged ICU stay led to complications. 4) The complications of her hospitalization became the primary cause of her hospitalization; her suicide attempt became secondary. 5) The rescue event ended; her goals of care should be revisited. 6) She is unable to participate, so we go to the family to obtain substituted judgment. 7) The family asserts that she wanted to die.
Bonnie got what she wanted, albeit later than she wanted. Medicine got what it wanted, albeit later than it wanted. Then why is it that I feel so broken over this?
[This blog entry was originally posted on Mr. Dahlke’s blog on April 16, 2013. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]