How does one begin to make medical decisions for someone who cannot speak? Often when this question arises, the person incapable of managing their care is in a critical situation, in which preservation versus comfort questions have an urgency that forces the guardian to act, such as a scenario in which the patient is on life support. A poor prognosis forces one’s hand quickly because there isn’t room for decision-making paralysis. But there are other instances in which the prognosis is far murkier, yet the same decisions remain.
G. is 78 years old, is profoundly disabled, and has lived under the care of the state in a facility for nearly fifty years. Last month, she needed to be admitted to the hospital for what her nursing staff believed was a UTI and upper respiratory infection. After perfoming a CT scan, the physicians at the hospital determined that she had a bowel perforation that was causing an infection. Under ordinary treatment plans, the bowel would be resectioned. Initially, the surgeons were ready to go with this course of action. However, further consultation revealed that such a surgery would be extremely high risk for her, and there was a decent chance she would not even make it through the operation. If she did survive the surgery, she would face a difficult recovery. She might need a g-tube. None of these things sound very good when you are dealing with someone who cannot communicate, has no ability to understand her circumstances, and lacks the ability to perform basic tasks unassisted.
However, it was made clear that the only other option was to keep giving her antibiotics and hope that the perforation sealed itself, which is a possibility with bowel perforations. The chances of a self-repair diminish as time goes on and eventually the infection will diminish the effects of the antibiotics, leading to sepsis and death. So, there were two choices, high risk surgery or hope the perforation resolved, presented by the physicians. To their credit, the doctors were candid in their assessment and while they did not push either option, they made it quite clear that major abdominal surgery to prolong G.’s life would be precarious and would diminish her quality of life. Ultimately, it was decided that the best path was the one that allowed her to go back to her home and continue antibiotic treatments with the knowledge that this could turn into a palliative care situation quickly.
It has been a few weeks since she returned to her facility and the perforation shows no sign of repairing itself. The provider explained that her bloodwork indicates a worsening infection and the antibiotics appear to have diminishing effectiveness. At this crossroad, the options are to send her back to the hospital to get treated with IV antibiotics that may be more effective, or to finish the prescribed course of antibiotics and then switch to comfort care measures. The former option would simply be a temporary delay of comfort care at best. After consultation with her niece, the decision was made to forgo active treatment and make her comfortable for the duration of her life.
Decisions like this make us uncomfortable because we are confronted with the hardest truth of life, that it has an end. How, we think, would we like it if someone decided for me to forgo life-saving treatment in the interest of comfort? This is harder to answer than it first appears. Most people would opt for comfort, but not everyone. When loved ones are incapacitated, we must speak for them, perhaps not knowing exactly what their wishes would be, but with experience of having known the person. In G.’s case, however, no one has truly known her. Not once has she uttered a word or written anything, but she is not a vegetable, she has had a reasonably active life. She has likes and dislikes. The mind is a mystery, and the extent to which she does or does not understand things is unknown. Operating with limited data, we are forced to speculate, and that raises the stakes in deciding how to treat her.
Ultimately, the choice is made by her body, frail and overburdened as it is. Morphine will flow generously to wrap her into a warm cocoon of comfort for her voyage to the far shore. She will decline until she breathes her last. Some people choose the manner and time of their own death, but for most of us we don’t have much of a say in the matter. Life is about learning to detach yourself from worldly objects and pleasures, and the denouement of the whole journey is learning to detach from our imperfect bodies. She may not be aware of this, but she will come to know it. Maybe her sister and mother will be there to wave her into a place where she can roll around in the cool grass in soft afternoon sunlight forever, having transcended her physical body and attained freedom at last. At least that’s how I would like to imagine it.
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