I’ve finally decided to write about a topic that has been hard to formulate into words. This post might offend some people, but there’s nothing I can do about it. Everything I’m saying here is what I honestly feel, and this is not a topic that I want to debate or be “persuaded” to take a different position on.
[Note: this is indeed a sensitive topic, and if you are dealing with the recent or imminent death of a loved one, you might not want to continue reading.]
A friend of mine is grieving the impending passing of her mother, and she expressed her frustrations about how our society treats our elders. In particular, she commented on how it’s illegal in most states to perform physician-assisted suicide, yet perfectly legal (and mandatory) to sit by watching a terminally ill patient struggle to eat, drink, or even breathe. Even if the patient would prefer the dignity of not being forced to go through that extended, difficult, pain-filled process.
I’ve written about my mother’s death, but there is so much more I’ve wanted to say, especially as time has given me the ability to detach a bit from the emotionality of our journey. I’m still incredibly grateful for the gift of spending Mom’s final years with her, but I have also wondered about how things would have been different if she had died sooner. This kind of self-reflection could be dismissed as “shoulda, woulda, coulda,” but I’ve still found it useful because it’s helped me to formulate a better sense of my own moral and ethical views.
To be blunt, I’ve questioned whether we made a responsible decision in allowing Mom to remain on the ventilator so long. I’m not writing this to seek other people’s approval (or disapproval) of that decision…I honestly don’t want or need that. In fact, I really, really don’t want to hear statements like, “You did the right thing,” or “You did the best you could.” Those conciliatory comments are right up there with “God is in control,” “There’s a bigger plan,” and that sort of thing. I don’t know many people who find comfort in those words.
So back to the point: there are times when I wonder if we should have taken Mom off the vent sooner. When she first decided to go on the vent, we had no idea that she would survive for as long as she did. We were expecting maybe six months if we were lucky, and we learned the statistical prognosis that less than 50% of long-term vent patients survive for a full year.
Mom wanted more time for us all to adjust to the reality of her terminal illness, and she was especially concerned about how one particular family member would handle the situation. She felt that “buying time” for a few months would make a difference.
But once you’ve elected to go down that road, it’s really hard to slam on the brakes. For one thing, vent removal must be done by a doctor, and for another, it’s really hard to identify the circumstances under which such a drastic change should occur. There is an institutionalization of sorts that happens with long-term acute medical care, and it can shape our thought processes. I found it difficult to transition from life-saving “rescue” care to palliative care because the two are so different. Once we finally found a hospice agency that would take on Mom’s case, they were incredibly helpful in that regard, but we still also had non-hospice nurses in the home who struggled to accept the change in approach.
One of the biggest conflicts I’ve had is questioning whether the amount of money spent on Mom’s healthcare (I haven’t added up the numbers from Medicare and everything else, but I estimate that it was several million dollars) was a responsible use of limited resources.
This is where the issue gets emotional: what would we be willing to give up for the benefit of others?
I experience this from simultaneously different angles. I’m so thankful for my mother’s presence in my life, and we grew so much closer (even though we’d always been close) during her illness. But then I think about how that money could have been used to help hundreds or even thousands of children who have no real access to healthcare.
In high school, I participated in competitive debate, and this was a sub-issue of our debate topic one semester. I remember having very strong opinions on the issue and quoting everyone from Kant to Aristotle to Ayn Rand (those who know me now might be surprised to learn that I was an avid fan of hers in my younger days) to defend my views.
But the challenge is that philosophy and politics can’t really answer these questions for us. Philosophers can ponder the meaning of life in an intellectual fashion without ever getting to the heart of the human condition. Then politicians invent ridiculous concepts like “death panels” to exploit the fears of a public that relies on the internet and cable news pundits in order to raise campaign funds and manipulate voters. They might even act righteously concerned about ensuring that everyone has access to healthcare, even if they can’t seem to offer any viable solutions that move beyond sound bytes. Yet, neither the philosophers nor the politicians usually address the experience of sitting with a loved one who is dying, or the process of accepting one’s own mortality. That’s left to the mystics, who are often viewed as a New Age threat by religious fundamentalists more concerned with “thou shalt nots” than with experiencing God in the world.
I started this post by saying that I don’t want this to turn into a conversation where people who haven’t been through my experience to try to persuade me to adopt a different opinion. Perhaps that’s because I hold seemingly contradictory positions on the matter, almost in tension with each other. The tension is good, though. It’s through the “in between” spaces that we grow, whereas absolutist-fixed attitudes have a tendency to collapse when faced with the complexities of life.
As we move forward with necessary discussions about healthcare policy (not just governmental policy or private insurance guidelines, but also how medical institutions and practitioners interact with patients and families), it would be beneficial to spend some time reflecting on our own attitudes about end-of-life care. It’s not fun or comfortable, but ignoring the issue won’t make it go away.
In one way, this means taking the emotion out of it (I’m speaking specifically about fear-based reactionary emotions). But it also involves sitting in the sometimes intense emotions of what it means to be a human being who can’t survive forever, questioning what exactly we’re clinging to in this world, while acknowledging that death and dying can be painful, difficult, and grief-filled. We also need to be mindful that everyone’s situation is different, and one person’s decision might not be the best option for others.
For me personally, it means evaluating whether I would want millions of dollars to be spent on my healthcare, at the expense of countless others who have been dismissed as “not important enough” to receive even basic care. My mother made the best decision she could under the circumstances. But I wonder if she would have made that same decision if we lived in a society that isn’t so scared to have deep discussions about our own mortality.