Did a recent experience change Miles’s mind?
Inhora recently cared for two people who suffered much in their last days. It impacted many of us. The following is a home journal entry by our Executive Director, Miles, about the experience.
Full transparency alert.
I realized a deep and troubling thing about myself after watching one of our Guests suffer. It caused me to realize that I believed in medical aid in dying (MAID). [Hang with me to the end.]
I don’t want to see someone suffer. Watching and hearing her cry out put a knot in my stomach. Hearing her hack with heavy secretions gave me a feeling of desperation. I felt horrible inside when I looked at her suffering and it caused me suffering.
If she was dead, I wouldn’t have to see her suffer anymore. Having her dead would relieve me of my suffering of watching her suffer.
I want to feel like my efforts to eliminate suffering work and are appreciated. I felt like I had done everything I could to alleviate her discomfort, but she continued to suffer. I would reposition her just-so with 7 pillows how she liked it, then would sit down near her or step out of the room and within seconds she would cry out, “Help!” I would give her all the available medications with regular increases of dose and frequency all leaving her discomfort untouched. All my attempts to fix her suffering weren’t enough - and I took it as a personal failure.
If she died, I could feel good about myself, knowing that my efforts were successful. The problem would be solved - the situation would be fixed.
I think that some suffering is unbearable. I felt awful when I imagined what it was like for her. Having back pain that didn’t go away. Feel anxious and scared. Being unable to get comfortable. Relying on others to change my brief, feed me, reposition me, or bring me medications. Calling out for help but not knowing why. I couldn’t bear it.
I would rather be dead than go through what I thought she was going through.
So, I was hoping and praying she would die so that I would feel better.
She helped me come to the place where I could be honest with myself - a gift of which I am forever grateful. These three realizations were painful to me, but incredibly enlightening. I’m forever grateful to her for this last gift.
First off, I realized that each of the three points were really about ME - not her.
This became my opportunity for personal reflection - what is the compassionate and dignified way of handling someone else’s suffering? Here are my thoughts as they align with each of the above points:
Instead of running away from the pain of their suffering, I can open myself up to the experience - let it shape me, let it be, hold space for it. Instead of trying to make the feeling go away, I can honor it, acknowledge it, sit with it. And, if needed, it would be ok if I needed a break.
Ultimately, I could practice compassionate presence - bending the “fix-it” reflex in the opposite direction. I can learn to be a caring witness and support - showing up and being truly present.
I can realize that people who are suffering need alleviation - not elimination. People who are afraid, who are suffering, or who don’t want to be a burden (all reasons that people choose MAID) need to know that their community cares about them and is willing to journey with them. Someone who hasn’t worked through their fears, who feels unworthy of someone’s care, or who is in pain is vulnerable and they aren’t able to make a truly autonomous and life-ending decision.
And if I’ve tried everything I can think of - I can “phone a friend.” Thankfully, I don’t need to have all the answers and I don’t need to be the hero. I can get help and direction from someone else - in this case, a hospice nurse or doctor. I can also listen to the suffering person - really listen…slow down…take a breath…if they can’t speak, pay attention to non-verbal cues.
And if one thing doesn’t work, I can work with a team to keep trying things until we bring the relief that the person deserves and wants.
I can overcome my ableism which limits what I think other people (and myself) can live through and is worth living through. People can endure a lot more than what we give them credit for - and that they’d give themself credit for until they were in the situation requiring it. How many times have I said, “I can’t handle this” or “I can’t do this”? And yet, I get through it and am better because of it. It’s undignified to put boundaries on humans - we’re beings capable of the impossible. Every life is worth living.
People are afraid of “disability”, pain, and dependence on others. Now MAID is presented as a magic bullet to “fix” all of those problems - even before they happen. In a civilized and peace-seeking society that claims justice and equality for all, ending a life should never be a solution.
And our healthcare system takes months to meet our citizen’s needs, but now in New Mexico it offers MAID within 48 hours while I have to wait weeks to see a dentist. (It gives me the creeps how quick and easy it is.) We’re now trusting this for-profit, monolithic, ableistic healthcare system with taking our lives - claiming that MAID has nothing to do with financial gain, that it cares about us, and that there won’t be mistakes (although current literature tells a different story like this 2023 John Hopkins University report which showed that deaths from medical errors is the 3rd leading cause of death in the US and the latest 2024 Joint Commission annual review showing a 13% increase of “sentinel events”?).
People deserve better than a death-concoction at the impersonal, cold hands of a medical system that doesn’t care about them. Sadly, this cold system commonly connives warm hands and hearts to dispense its death.
What would a healthcare system look like that treated every body and mind with honor, worth, and provided support for living? I believe that we live in an age when this is within reach for humanity as it has never been before. And it depends on each one of us.
Tangent done, back to point 3.
From time immemorial, people have found meaning and life worth living despite what might seem like “unbearable suffering.” When faced with someone else’s suffering that seems unbearable, I can open myself up to being the kind of person that is willing and ready to journey with them and hold space for them - and this togetherness could be what makes it bearable for that person.
I think that many sufferings and disabilities are the result not of the individual person but of an unfeeling, not-my-problem world. That it’s society that makes life “unbearable” and “disabling” for some people - a some that it decides has more value or not. Instead of standing by, I can do my little part to make the world more dignified, just, and equitable. And I can speak up, calling for the healthcare system and my community to become more bearable - and livable - for all people.
I can make room for others and let their world change my world.
The life lessons from this experience have changed me for the better. Practically, it’s given me and Inhora more means to alleviate suffering, especially when it’s severe. Internally, it enlightened me to honor life (every body’s) even more, to love ever deeper, and to hold space for the suffering - despite any suffering it may cause me.
This new light of a deeper Love brings me to an even surer opposition to MAID.