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. I will (likely) discuss at another time the more philosophical and ethical components of the case, and the dialogue and recommendations will be more objective. For now I find value in exploring simply the human side of it. None of this is fiction; it is, however, a filtering of the clinical information through my own perspective.
Bonnie*, 47, tried to kill herself. No one disputes that. That was clear from the phone call with her brother Jack*, the one in which her brother said that Dad and sister-in-law Alison* were coming back home to get her and bring her to the hospital. Mom wasn’t good, and they were going to move her to comfort care measures. She was going to die soon, and Dad and Alison were going to bring in Bonnie to say goodbye.
That was enough for Bonnie. She sat down and began to write. Her fingers still worked well enough for that, writing. The cerebral palsy may have taken away some, many, parts of her life, but she could still write down the kind of cat food to give Kit. She knew that she wanted to give away all of her clothes to the local Goodwill. She knew, and she wanted her family to know, that she had given this a lot of thought. Years. After all, everyone had that sense about Mom, she really had started to decline over the last two years. Everybody knew she wouldn’t be able to stay much longer. Bonnie knew that too. She also knew that she didn’t want to live without Mom. It’s not that she couldn’t, but that she wouldn’t. She wanted the family to know that, and to respect it. And so she wrote.
I can’t imagine finding my sister, or my daughter, not like that. Not when we are all supposed to go back to the hospital to say goodbye to Mom. I get that. I would have called 911 too. Probably even if I saw the note first, sitting calmly to read it and try to decide how best to understand and honor Bonnie’s last wish- to be left alone. I can rationally imagine myself doing that. But then I would look over, and see Bonnie, next the table where I found the note, dying before my eyes. I would call 911 too.
Once the medical team gets involved, an interesting thing happens. It becomes very, very hard to convince us to honor that last wish. Was she suffering from underlying depression? Was it undiagnosed? Untreated? Undertreated? Was this a rational decision, or an irrational one? How much confidence do we need from the family’s account to stop what we are doing, and to let her pass? I don’t presume to have the answers to, well, any of it. And yet, that is what is asked of me. And so we go, together, to try and find some answers.
Let’s begin medically. Bonnie is intubated, and sedated. She likely aspirated on some of the charcoal she was given to counteract all of the medications she ingested. She now has pneumonia, for which she is being treated with antibiotics. Medically speaking she is in the midst of what we refer to as a “rescue event”. This means that we are in one sense on autopilot. That is, our medical obligation is to complete the event, and attempt to stabilize her until we can ascertain the nature of her actions. For Bonnie, that means we are trying to treat her pneumonia, which will increase the chance we can get her to breathe on her own and remove her from the ventilator. Until that happens, we won’t be able to say with confidence that she didn’t simply react to the terrible news about her mother, and that while difficult, she really wants to live. Primum non nocere; first, do no harm. How harmful is it to withdraw everything at our disposal to let this woman die, if she really wouldn’t want to? No, we need to be more confident.
Bonnie didn’t really seem to enjoy her life the way the rest of her family did. She managed well enough with the recurrent kidney stones, with the mild epilepsy. She worked hard, to be sure, likely harder because of the cerebral palsy. She got her associate degree, and she worked with kids. She worked with three families’ kids – six in all – and was their nanny. From birth to school age, she helped to raise these kids. It sounds like she was pretty good, too. One, now 17, is having a hard time thinking that his “B” may be gone. She eventually couldn’t do it anymore, though, due to her CP.
The weight always seemed to bother her, too. She could never quite get her diet just right, and she seemed genuinely frustrated at the slow but consistent weight gain. It affected her self-confidence, too. Having a social life with cerebral palsy, she could do. Having extra weight may have been manageable too. But both, they both seemed to feed each other, and starve whatever positive image she had of herself, until there just wasn’t anything there. It would likely be hard to put yourself out there and trust someone, even socially, if they hadn’t been there through it all. Seen the slow burn of her CP never improving, of her rarely ever losing any weight and only gaining it. Of getting the regular Botox injections not out of vanity, but out of necessity. She didn’t have friends, then. None that she could trust with anything beyond the superficial. None like Mom at least.
Mom and Bonnie were described as a dyad. Codependent. Yin and yang. Jack and Alison acknowledged it. Dad admitted that he never had that relationship with either of them. He said it with perhaps the slightest tinge in his eye when he says it. Is it jealousy? Sadness? Anger? Regardless, it seemed self-evident that they had a relationship that was far more intimate with each other than with anyone else in their lives. They relied on each other for the day-to-day tasks. They went with each other to the doctor’s appointments. Their health declined together.
I tried to imagine Bonnie’s world, to try to determine her choice could be rational. She made plans for the future. She was a pretty efficient knitter, even having limited function on her whole left side. She knitted stocking caps for kids in a local school. She was planning on making more. She had plans. But I think, I think, that she also knew that on this highway of life that she was on, there was an exit ramp ahead. She didn’t know how far out it was, but she would know it when she saw it. It would be when Mom died. But until then, what’s the point of sitting around and just waiting to die? She may as well knit something in the meantime.
[This blog entry was originally posted on Mr. Dahlke’s blog on April 8, 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.]