Death, MAID, and Scanxiety

Solo Canoeist

It's complicated.

Zoom has changed so many things in my life. Meetings across the nation. Places I will never go. Meeting people I will never see face to face. Family gatherings around birthdays.

One of the most difficult was a Zoom funeral a couple of weeks. Actually I have been calling it a wake in my communications. But search for a zoom wake on the Internet and you won't find much. That is changing as funeral homes get into the technology but how to create the sense of ritual, of memory, of closure, and celebration of life that modern funerals have become is new.

Ours was a gathering to recognize the loss of one of the members of an online community that I am part of.  There is a part of me that wants to respect the privacy of death and the decisions around it. But he posted publicly about this chosen death including a note on Facebook the day he died. And it has sparked many many discussions. We knew he was struggling though we had no idea that death was imminent. When he announced his chosen day it felt strange for us all. We have a regular get together via zoom. By consensus we agreed to dedicate the meeting after his death to memorializing him. But because he still had access to the information it was hard to discuss and organize. What was maybe even harder was to honour his choice. Letting him know how much our brief friendship had meant to us without trying to convince him to change his mind.

For my American friends let me define MAID - Medical Assistance In Dying. In Canada, MAID was legalized a few years ago. It was and is hugely controversial. Like abortion, an issue that it bears many parallels to, it goes under a variety of names depending on your viewpoint. Dying with Dignity is one. Euthanasia is another. MAID's implementation in Canada requires the person requesting it to go through a process before using it to die. That process makes sure that there is an imminent expectation of death and that there is no coercion. There are several challenges with the current legal situation. Many doctors and religious based health care facilities will not sign on, citing a duty of care that does not allow for death. The other major challenge is that you must be decisional. In other words, the day that the procedure will be performed the patient must agree to it. This has led to a number of what can only be described as early deaths.

Much of the impact around MAID focuses around the caregivers - friends and family. In one of my early conversations, the spectre of pressure on other residents in a care home was used as an example. If this lucid person is choosing to die, maybe I should too, goes the thinking. After all I'm a burden on my family and on society in general. Last week I had another experience with MAID. A friend discovered that another friend was going to use MAID the next day. They had chosen to keep it private. There would be no opportunity for friends to try and talk them out of it. What happened though is that there was no opportunity for final goodbyes or reconciliation either.

This recent incident brought forward the impact on caregivers who choose to support a difficult decision whether they agree with the moral right or wrong of assisted death.

And therein perhaps lies the biggest hurdle. It is an individual choice. Informed by values, upbringing, and previous experience there is perhaps no more personal choice than choosing how to die. And to bring it home. What does my God require of me? Out of respect for my caregivers this is an intimate choice that will be shared and talked about with them before I'm prepared to talk about it publicly. So to the question would I use MAID, the answer is "I don't know."

I will tell you though that MAID is a hugely difficult conversation to have. When I try to have it with my church friends, they seem to run for cover. I suspect that the personal implications for me makes it difficult for them. Every time I mention having an "Expiry Date" people cringe. I consider myself fortunate, I have the opportunity to make decisions about how I'm going to live. Yup, planning on asking my doctor if I can prepare for a 5K run. Painting and writing up a poetry storm. At this point I still have life to live.

Still having life makes it a hard conversation to have with family caregivers. I'm not dying so why talk about it. I got part of the answer this morning when another friend moved her father home to die. His directions had been clear. As were my fathers. "No heroic measures." "Comfort care only." I will tell you that my desire is for a gentle graceful death.

And that brings me to what's going on in my head. Several months ago I had the conversation with my oncologist and with my family around the possibility of landing in the hospital in the time of Covid-19. I made it clear that a ventilator was not in the cards. Comfort care only in that circumstance.

Now as the lockdown eases other people's anxiety is going down and mine is going up. Anger at people who have made mask wearing into a political issue. Sorry but your freedom of choice means that I now have to isolate myself more than ever. I used to be able to walk freely in my neighbourhood. I may have to rethink that choice. My landlords household has other vulnerable people in it so I feel safe here. A choice about attending church has been taken out of my hands with the ongoing border closure.

Next Monday I have to go and get another CT scan. The fact that is only six weeks since my last one has given me pause for thought. While there has been no indication of a change in my physical status, there was the original void and the new tiny nodules. Is this the beginning of progression? It could be a quick two step to the end game. We have a name for this phenomenon in cancer circles - scanxiety. Scanxiety is the anxiety that comes with waiting for the results of a CT scan.

If there is progression, there will be a biopsy to determine if I have a mutation called T790M. If I do then I will be on to osimeritinib (Tagrisso) and probably have another year or two if I tolerate it. The chances of having the mutation are 50/50. If I don't have it then there will be a combination of chemo and palliative radiation as pain arises. As a doctor pointed out in a virtual seminar last night that extension of time may give the opportunity for another drug to emerge that will further prolong my life.

As I mentioned in my last newsletter there was another one brewing. This is it. This probably hasn't been the easiest newsletter to read. Forgive my bluntness and honesty.

I was prompted to write it because of a morning conversation with my late wife's brother Ed. His openness and willingness to have the hard conversation encouraged me. And then my Bible reading this morning in Revelation 3:1b-4 hit me between the eyes. One of the letters to the seven churches that opens John's dream revelation goes this way in "The Message:"

“I see right through your work. You have a reputation for vigor and zest, but you’re dead, stone-dead.

Up on your feet! Take a deep breath! Maybe there’s life in you yet. But I wouldn’t know it by looking at your busywork; nothing of God’s work has been completed. Your condition is desperate. Think of the gift you once had in your hands, the Message you heard with your ears—grasp it again and turn back to God.

If you pull the covers back over your head and sleep on, oblivious to God, I’ll return when you least expect it, break into your life like a thief in the night."

I raised the question earlier, what does God require of me? Here he clearly calls me to His Message. That His forgiveness for all the wrong that I do is to empower me to pass that Message on. When people praise me for my positive attitude, for my empathy, for my boldness all I can do is point silently to the God who has given me these gifts.

Pray for me as I await the results of this next scan.