Some time ago I mentioned that a terminally ill friend was pursuing medical aid in dying (MAD), and asked if any Dopers personally knew someone who had done so. I know MAD (an unfortunate acronym, but so be it) is an exceedingly rare thing, but given the population here on the Dope, I was surprised nobody had any experience with it that they were willing to share.
I can now offer my own experience. I’ll start by correcting some deliberate misinformation I provided in that other thread:
The person who died was not merely my friend, he was my dad.
I won’t burden you with the usual details of such a loss; it will suffice to say my grief runs as deep as that of anyone who has lost a dearly beloved father, and I will miss him for the rest of my life. My purpose here is to share some of the unique aspects related to the manner of his death. In order to preserve some level of privacy/anonymity, I will not be able to explain to you exactly what he was going through – the nature of his suffering, and the greater suffering that lay in wait for him had he opted not to make his exit when he did. But really, it’s enough for you to know that his quality of life was near zero, it was soon going to get much worse, his condition was judged by medical professionals to be likely terminal within six months, and he was judged by those medical professionals to be mentally competent in his wish to die.
In reading about MAD, you learn that roughly half of the patients who receive their life-ending drugs never actually ingest them, instead keeping them as a kind of security blanket that provides them with a sense of control and emotional comfort in their final days; it helps them to know that they have a way out if the path to a natural death becomes unbearable. That was not Dad: he was crystal clear and unwavering in his wish to die. If he had wanted to, he could have quietly winked out with no fanfare and minimal audience as soon as his prescription was filled. Instead, he saw fit to give his family one final, precious gift: he generously delayed his death, choosing to tolerate his condition until we could all travel to be together with him.
His desire for MAD was primarily for his own benefit. But the way it all went down – the manner of his death, together with his choice to delay it – had several positive aspects for the rest of us:
- He gave us time to say whatever we needed to say to him, and the specificity of knowing exactly when he would die made it absolutely clear that we could not afford to wait. When a terminally ill person gradually approaches a natural death, there’s almost always uncertainty – Should I call today? Should I visit next weekend, or is that too soon/too late? – and I think for some people that can inhibit complete and timely openness; you might think “I’ll say more tomorrow,” or “I’ll call later.” And then maybe you don’t get the second chance you were counting on, because they suddenly take a turn for the worse, get doped up on morphine to the point where you aren’t sure they even know you’re there, and die before you can talk to them again. In other cases, the dying person progresses on a long, slow continuum from perfect lucidity to total unconsciousness, and you’re never quite sure when to say goodbye. In our case, in the final days before Dad died each family member had private visits with him, and we all knew beyond a shadow of a doubt that that would be it; there would be no second chance, no “tomorrow,” no “later.” I’m sure that in the years to come I will think of things that I might have liked to say to him (I suppose this is an extreme example of l’esprit de l’escalier ), but when my turn came I poured out my heart, expressing among other things my deep gratitude for all he had done for me over the course of my life so far and my profound sadness that he could not be around for the rest of my life. I will have no regrets over missed opportunities, and I think the clarity and certainty regarding the timing of his death helped me greatly with that.
- In bringing us together the way he did, we were all present to support each other right from the moment of his passing as we sobbed and shuddered through the first minutes and hours without him. My mom’s grief, as you might imagine, far surpasses mine; I’m particularly glad we were all on hand to support her, emotionally and logistically, during that very difficult period. Having experienced such amazing support in the aftermath of my dad’s death, I’m now dreading the thought that someday I might receive a distant phone call informing me of my mom’s death – and that I might be utterly alone and without support when I answer the phone.
- Had he chosen instead to ride out his condition to its natural end, we absolutely would have supported his choice, but I think it would have been much harder on all of us. Friends have told horror stories about loved ones slowly wasting away in a hospital bed, or dying alone hours after a fall/heart attack/stroke, with the body only being discovered sometime later; the knowledge that their loved one suffered such a miserable death compounds their grief. In contrast, my dad died painlessly and quickly in his own home, in his own bed, with his wife, children, grandchildren, and all their spouses – his entire familial legacy – gathered close and expressing their love for him as he drank the medicine, closed his eyes for the final time and stopped breathing. Choosing the time of his own death so we could all gather together and fill his last days and moments with family and love helped to give us bittersweet, rather than exclusively sad or tragic, memories of his passing.
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So that’s the good. Now for the weird:
- Store clerks seldom ask how your weekend went, so if someone you love just died, you generally needn’t worry about losing your composure or trying to come up with a polite answer. But as often as not, a clerk at Whole Foods or some such place will ask, “so…got any plans for this coming weekend?” Yeah, it happened a couple of times. I never was at risk of breaking down; quite the opposite, I found myself smiling as I thought “what if I gave an explicit, honest reply?” Instead, I just said “visiting with family.” True, if not the whole truth.
- We wrote his obituary in advance of his death. While it was good to have the time to massage it into something worth reading, it was unsettling to be writing the actual date beforehand.
- When someone dies an unplanned death, survivors count various milestones afterwards: It’s been two days since Dad died. Today is my first day back at work since Dad died. It’s been one week since Dad died. I’ve had all those, of course. But knowing when my dad would die meant that I also had milestones passing through my brain beforehand: Dad will die in one week. Today is my last day of work before Dad dies. Dad will die in two days. Dad will die in two minutes.
On that last point, it’s difficult to describe the surreal atmosphere and intensity of emotions during the last hour or so, when concrete steps were being taken to prepare for the end. There was a sequence of anti-nausea, anti-emetic, and anti-anxiety drugs to be taken during that time frame to prepare for the final, fatal dose of Seconal, and while only that final medication resulted in biological commitment, the first anti-nausea pill in the whole sequence started the countdown clock telling us all exactly how much time we had left to share our parting thoughts with Dad.
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That covers the weird. Now for the bad:
MAD is still controversial. Apart from the family members who were present at his death, only a handful of other people know the truth. Because it’s still controversial, I find it difficult to openly discuss with friends and acquaintances the manner of my dad’s death IRL. Yes, it was his choice, not mine (leaving aside for a moment the fact that I would have made the same choice in his situation), but the next questions would inevitably be how I felt about it or whether I supported his choice or his right to choose, and I’m not big on face-to-face confrontations. I’ve dared to tell a few very close friends whom I have so far correctly estimated to be open-minded about such things, but I’ve hid the truth from some others I don’t know quite so well, instead simply telling them that he died a natural death due to his terminal illness. I really hate the idea of hiding this from anybody; it feels like I’m carrying some kind of dark family secret, and I hope the day soon comes when a terminally ill person’s choice of how to die no longer invites moral judgment.
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So that’s the good, weird and bad. Weighing them all together the good, IMHO, wins by an enormous landslide. When I first learned that my dad intended to pursue MAD, I couldn’t imagine willfully sitting and watching while he drank poison and died right before my eyes; it just seemed…ghoulish. Now that I’ve seen it through, I can’t imagine dealing with the passing of a loved one any other way, i.e. watching them fade away over a lengthy period or learning of their sudden death after the fact. I’m sad that my dad is gone, but I’m glad he was able to truncate his suffering, and grateful that he chose to mitigate ours in the process.
I started my previous thread looking for advice. I’ll now offer mine, free of charge and worth every penny.
If someone you love is terminally ill and chooses MAD, and they invite you to be present for their death:
My advice to you is to be grateful (and honored) for the opportunity to be part of one of the most significant events in their life. To go and be present and accept that they are about to die before your eyes is a terribly difficult thing to do, but it is, IMHO, the best thing to do. Have courage, support your loved one, and participate as fully as you can. Yes, they will die, and you will be sad when it happens – but they will die whether you’re there or not. If you stay away, you will miss out on the chance to grieve in the supportive network of the friends and family who did choose to be there with each other.
I’ve been blessed with a family of very rational people who were all fully supportive of our dad’s decision, so there wasn’t any discord among us at all. I know not everyone is so fortunate. If you find yourself ensnared in emotional arguments with other involved parties, I think it’s critical not to get sidetracked into a debate about whether it’s the best choice; instead, focus on the fact that it’s not your choice or your opponent’s choice to make, it is a choice belonging solely to the terminally ill person and no one else. Neither of you has walked a mile in those shoes, and so the only appropriate action is to support that person’s choice, whatever it may be.
If you are terminally ill and wish to pursue MAD:
First and foremost, get educated. One big resource is Compassion & Choices. They’ve been around for 30+ years in one form or another, helping people in your circumstance achieve the best of what is possible, whatever you believe that to be. They have considerable experience with MAD, and can be a valuable resource in helping you navigate your way to the end you want for yourself. Misinformation abounds. For example, before being involved with this, I had the impression that the patient had to drink the medicine without any assistance, and they were simply screwed if they couldn’t raise the glass to their own lips and swallow. Now I know that the law allows quite a bit of latitude in this regard, the only requirement being some sort of willful physical action on the part of the patient. So for example, an assistant can hold the glass of medicine while the patient sips through a straw and swallows. If a patient can’t swallow, they can self-administer through a feeding tube by using a syringe. And for patients who can’t swallow and lack the dexterity to operate a syringe, there are cases on record where the syringe has been rigged so that the plunger is pushed when the patient deliberately drives their electric wheelchair toward a wall.
Second, make sure your doctor is educated. Even if your doctor wants to help you out, MAD is so rare that it’s quite possible he or she has never dealt with it directly before. Compassionate Choices has a Doc2Doc program through which medical professionals can learn what they need to know in order to help you get what you need; ask your doctor to get in touch with them.
Lastly, if you have been approved to receive MAD, and if you happen to be a private sort of person whose first inclination is to die alone or mostly alone with little fanfare, I hope you will nonetheless consider giving your family, if not also your closest friends, the sort of gift my dad gave his family. If you can, grant each of them an opportunity to privately speak their piece with you in the clear knowledge that your end will come very soon, and bring all of them together so they can support each other right from the moment of your death. Although your passing marks the end of your suffering, it is the beginning of theirs; if you can manage this, you will have done a great kindness for them and will be remembered fondly for it.
For everyone else:
I am aware of a few documentaries that explore the issue of MAD.
- “The Suicide Tourist” (also broadcast as “Right to Die?”) follows the story of an ALS sufferer, Craig Ewert, as he pursues his death at a Dignitas clinic in Switzerland. It’s presently available on YouTube, but you can also watch it here on the PBS website. One part that resonated with me was his adult children speaking of their final visits with him. This happened well before he died, because he did not want them present at his death, feeling that it would make it more difficult for him to say goodbye and take that final step. His kids were fully informed and said their final goodbyes sometime prior to his death; his daughter was OK with this after the fact, but no word from his son afterwards was included in the documentary. One unique aspect of Ewert’s case was that he required the full-time use of a respirator. This had to be placed on a timer (by Ewert himself) so that it would shut off once the medicine rendered him unconscious; without that detail, the respirator might have kept him alive until the medicine wore off.
- ”Terry Pratchett: Choosing to Die” is similar to “The Suicide Tourist.” Pratchett is the host/narrator, and he follows the story of one man, Peter Smedley, through his final days until his death at a Dignitas clinic. It was available on YouTube at one point, but it appears to have been taken down. It is presently available for viewing, free of charge, on Documentary Heaven. Smedley’s wife was present at his death, but none of his friends knew about it until after the fact, when they received letters from him explaining it all.
- How to Die in Oregon, a ~2-hour documentary that follows the cases of several terminally ill people in Oregon as they deal with their impending death. I’ve only seen segments of this on YouTube; having been part of this process so recently it will be a while before I feel like watching the whole thing. For those of you who are interested, it’s available for rent/purchase from numerous sources.