How My Mom’s Death Shaped My Views about Elective Euthanasia and Informed Consent
It didn’t have to go down like this.
The first thing you have to understand about my mom is that she needed an advocate by her side, and the first thing you have to know about me is that I didn’t trust anyone else to do it.
Years ago, that might not have been possible. But there seems to have been a shift in the medical field, and people are realizing more and more that involving a patient’s family in the care process has benefits for everyone at the table, including the patient. In this case, it mattered more than most, because my mother had been admitted to the local hospital in part because of dementia-like symptoms secondary to end-stage lung cancer. It had metastasized to her liver, which had caused her brain to become inundated with toxins the liver would normally have flushed out.
She didn’t know who or where she was half the time, and so if I hadn’t been there by her side, there’s a real chance she could be abused, given the wrong treatment by accident, or sent to a psychiatric unit. None of this would have helped anything.
What might have helped would have been if her primary care physician had bothered to order some sort of imaging any time in the two years prior to her diagnosis, when she was complaining of trouble breathing and unexplained chest pain. We were told this was not considered malpractice because she likely would not have lived much longer with the forewarning, given the statistics and what is known about lung cancer. That is to say, once it’s detectable on an X-ray or MRI, you’re probably toast no matter what is or is not done for you.
That upset me, but not for the reasons one might suppose.
I felt that, the way this all happened, she was robbed of the agency I would have wanted for myself, to decide how to handle the disease and the time I had left.
With cancer, it’s often a choice between two bad options:
- have treatment, usually involving some combination of chemotherapy, radiation, surgery, immunotherapy, genetic medicine, or otherwise
- forego treatment
The first option might give you more time, but the quality of life is often diminished significantly. On the other hand, declining treatment may give you less time overall, but with significantly better quality of life.
This is an oversimplified view of things. And there’s always a huge level of uncertainty when it comes to serious illness, especially cancer. But that means the decision needs to be the patient’s, assuming the patient can consent.
Therein lies the problem, in my mom’s case: we didn’t find out about any of this until long past the time when she could consent to anything at all.
I had never been nearly as angry before in my life. I had never wanted to lay hands on someone in anger, beyond something like a momentary jolt of passionate rage that left almost as quickly as it came.
It might have changed nothing. It might have changed everything. There is no way to know, and I have to live with that. But I wish she would have been afforded the choice and the dignity that I would want for myself.
I don’t know which way I would have gone, but I would have preferred to have the option to die on my own terms. I would have preferred that she had the option as well. And as I sat with her, in the quiet moments, I had time to think about these things, and I knew that I would have helped her if she had asked, whichever way she had chosen to go.
If she had asked me to speed things along for her, I would have honored that request, and even if it hurt me, I would have done it without guilt if I knew that was what she wanted.
Why am I so certain? Well, like I said, I had some time during (and after) these proceedings to think about death and dying. But it doesn’t really matter what I wanted. The whole point is that I believed she should have had the opportunity to choose or at the very least to come to terms with what was assuredly coming down the pipe.
I have no legal recourse, and I have no intention of engaging with her doctor, in any way. It wouldn’t solve anything. At most, it would give me a momentary feeling of satisfaction likely not worth the trouble. But there is a visceral, mighty, and — I believe — totally natural drive to seek payback from someone who we believe has wronged us.
I don’t think there’s anything wrong with having that kind of impulse flare up in you, particularly when it comes to someone you love. If we weren’t attached to those close to us, we quite possibly wouldn’t have lasted this long as a species. They might be first-degree genetic relatives, or they might be found family or something else, but we tend to form tribal, human connections, especially when we go through harrowing experiences together. Those connections can evoke powerful emotions in us, especially when our people are threatened.
But it’s what you do with those things that counts. In the long, dark, quiet hours that may come to you, think about that. Allow yourself to grieve things that happen, but find out what you can do with your passion, your anger, your rage, your sorrow, and anything else you’ve got to work with. Harness whatever it is, and use it to make things better, however you can. This is my goal for the moment, and I intend to build something wonderful from there.
