My Mom should have died twice. Instead she spent three years bedridden, battling bedsores, atrophied limbs, the indignities of being cared for like an infant, and, as her dementia deepened, the fear of not knowing where she was nor who the people were who were caring for her.
“If you were in Mom’s shape what would you want me to do?” I asked my Dad. “Would you want me to keep you alive?”
“HELL no!” he said.
“Then why are you doing this to Mom? You know she would hate to live like this.”
“She’s not ready to go”, he said.
“No… You’re not ready to let her go. You need to do what she said she wanted and what YOU want, for her. It’s not about you.”
“She’s. Not. Ready.”, he said.
So, I sat by her beside in the hospital for a week managing her pulling at her tubes and vents, tempted to direct the staff to remove them all, but I knew they would call my father to confirm the decision.
I was willing to pull the plug on my Mom but I was not willing to live with my Dad if he knew I did that against his wishes.
End of life directives are only as good as the person you legally entrust to follow through when faced with making the decision to let you die.
Eventually the ventilator and antibiotics cleared the pneumonia from her lungs. The medical transport brought her home from the hospital and we put her back in her bed and back on Hospice.
I hated seeing my Mom suffer. I hated that my Dad didn’t have the integrity and guts and love for Mom to do what they both always told us they wanted and put in writing in their end of life directives. I was angry at him. I was angry at what my Mom was going through. I was angry at the doctors for hooking her up to begin with when they had her advance directives on file in the hospital. I was angry at God.
I made a decision to usurp my father. I usurped everyone.
I told our Hospice nurse, “The next time Mom has respiratory or a potential life ending infection or issue, you tell ME. You do not tell my Dad. You tell him NOTHING. Give me the comfort meds, tell me what to do. I’ll deal with it. I’m not letting him do this to her again.” She agreed. He was not capable of doing “the right thing” for Mom.
Mom had signed her own death warrant in her end of life directives. I had essentially signed on to being my Mom’s executioner by a clandestine verbal passive euthanasia pact with her Hospice nurse. I hated it, but I hated my Dad and I loved my Mom, and I did not fear God’s nor the court’s judgment for it if put before them for being a usurper.
Death is pretty simple, really, but complicated because of people. People who have medical technology, people who have legal standings, people who love, people who have religious definitions of life and death, people who have jobs with ethical constraints, people who have ways to fly under their ethical radars, people who have certain knowledge, people who are ignorant of distinctions, people who are emotionally attached, people who are emotionally burned out. At the intersection of all these people is someone who is dying, who may or may not want to die, or wants to die in a certain way, with or without the help of any or all of the above people. This is the issue with “euthanasia”: How can we die well with all of this coming to bear all at once on the ending of our days, sometimes without our consciousness of it all happening to us and our ability to direct it.
Euthanasia, dying well, is more complicated because medical technology has made it possible to sustain life far beyond our body’s capacity to stay alive on its own even in the face of catastrophic illnesses. Machines and drugs can replace major organs, necessary systemic functions, bodily chemistry, and immune reactions. It is hard to die, much less die easily, quickly and well.
This has made it necessary to define euthanasia very precisely. I technically knew my parents’ end of life directives were a form of euthanasia (more precisely, voluntary passive euthanasia). However, the precise definition was inadequate emotionally when I decided to invoke it clandestinely with Hospice, knowing that my Dad was still LEGALLY the person who was responsible for making that decision. We were not willing to go through the legal and emotionally/relationally devastating process to have him declared mentally incompetent to take that from him. If my life was purgatorial with him, this would have been a Dante-esque level of hell I was not willing to risk entering. (Eventually, because he died before my Mom did, it was all a moot point, for which I am thankful.)
As I got deeper into the complications of orchestrating my parents’ dying process I also got deeper into the “end of life” issues, including euthanasia, assisted suicide, right to die, and the theology of life and death.
Euthanasia is more complicated than just “mercy killing”. There are essentially two "kinds” of euthanasia: Active and passive. In general, active euthanasia is “directly killing someone”, passive euthanasia is “allowing someone to die”. In general, morally (religiously/ethically/medically) active euthanasia is condemned as “murder”, passive euthanasia is permitted under certain circumstances, but not all.
Active and passive euthanasia can both be broken down into three categories: Voluntary, Involuntary, and Non-voluntary. The distinctions are important when one starts making plans on how to die or how to let someone die.
Voluntary Active Euthanasia is basically “suicide” (which I will discuss MUCH more in depth in later posts). It is taking one’s own life one’s self or being assisted to kill one’s self by the help of another person. This is the crux of “Physician assisted suicide” and “Right to Die” legislations.
Involuntary Active Euthanasia is basically murder. It is when someone is killed against their expressed wishes or will.
Non-voluntary Active Euthanasia is when someone is killed by someone else, but the person’s wishes are not expressed or cannot be known. For example, an infant or adult person who had no end of life directives and the legal guardians, parents or doctors decide to actively kill with pain medications in the middle of a surgical procedure because the medical condition is so beyond help and incurable and horrific they cannot do anything more.
Voluntary Passive Euthanasia is the concept behind “end of life directives”. A DNR (Do Not Resuscitate), no feeding or breathing tubes, no invasive “heroic efforts”, are all voluntarily expressed as refusal of treatments that would extend life beyond the body’s ability to sustain it on its own. Universally (ethically and religiously), refusing treatment is not considered “Active Voluntary Euthanasia” (but more on that later too…).
Involuntary Passive Euthanasia is allowing someone to die by withholding treatments/life saving procedures against their expressed wishes or directives. This gets complicated when the economics of treatments and familial issues become burdensome.
Non-Voluntary Passive Euthanasia is when someone is allowed to die by decision of a legal guardian or doctor when their wishes cannot/are not known, as in the case of allowing a newborn with no chance of survival to die “naturally” without doing any medical interventions.
At the core of all of these distinctions are the concepts and questions surrounding the definitions of sanctity of life, the nature of suffering, what is death, the morality of killing vs. letting die, what is “doing no harm” and what is “doing good” in the face of unbearable suffering, what is “natural”/letting nature takes its course, and is all self-chosen death “suicide” if life sustaining technology is available, and is all suicide a “sin” against self, God and loved ones?
As Facebook says: It’s complicated.
Next: Voluntary Active Euthanasia: On mercy, martyrs, and heroes. Is Suicide Always Wrong?