And bending down beside the glowing bar/ Murmur, a little sadly, how Love fled…
I.
I am in my car, driving from appointments with one client to another, and I am listening to people on my radio talk about my father’s cancer treatment options.
It’s been almost half a decade since my state passed a referendum allowing medical marijuana, but it’s still not really an option for my father. He’s undergoing an intense regiment of radiation and chemotherapy in the hopes of pushing his surprisingly resilient ailment into remission. The pain and nausea work together against his resolve, tag-teaming to ensure that, should he not win the battle, the last year of his life on Earth will be his worst.
His doctor is hopeful that marijuana might help soften the negative side effects, and very privately hopes that my father might be able to “score” some illegally. Though the State of Oregon has given my father its blessing, the Bush Administration has not — and they are quite clear that my father, his doctor, and the supplier could all face the full weight of the law were they to deviate from the “just man up” approach to cancer therapy. The current Attorney General is adamant about this, as will be his eventual replacement. (Though to be fair, once he’s out of office that replacement will casually admit that he really doesn’t have a problem with it.) The next presidential administration, sweeping into office with promises of Hope and Change, will be pretty much on the same page as this one as to what my father’s potential treatment options should be.
My father has never tried marijuana, and were it not for the cancer treatment he would never consider doing so. A life-long conservative Republican and decade-long subscriber to the Limbaugh Letter, he’s about as far away from a hippie as one might get. Still, the men on the radio and their callers keep insisting that my father is nothing but.
Not that they mention him by name, of course. How could they? They don’t actually know him, and the truth is they have neither the time nor the inclination to meet him. To them, his suffering is merely a thing he is using as an excuse to toke up and listen to rap music. Their rabid insistence that he never try the therapy his doctor recommends is, to them, just gleeful hippie-punching.
Eventually, of course, the standards will soften enough that people suffering (and, to be honest, people pretending to suffer) have access to regular treatment in my state. It would eventually be welcome news for my father, except that he will be dead by then. It might be nice to be able to say that his last years were easy and the very end peaceful, but… well, you know. Cancer and all that.
Still, I get that for many people punching hippies is really, really important.
II.
My mother very badly wants to drink a glass of water before she dies.
She is something of a prisoner now, trudging through her last few days of hospice and life. She has not been out of the bed in which she now lies for several days. She never will leave it again, really, or at least she won’t leave it alive. She has lost use of her arms and legs alike. Nurses come in several times a day to shift her body to keep her from getting bedsores. Not that bedsores matter much at this point, mind you. The physical agony is everywhere, all the time at this point, as if her body were being continuously pushed down through a bottomless container of glass shards.
Slicing through the pain, however, is her too keen awareness that her mind is slipping. The cancer that’s eating away at the rest of her organs is feasting most heartily on her brain. She’s losing more than memory at this point — she’s losing her self. She’s asked that a picture of my father be kept where she can see it, because even though she can remember that she was lucky enough to have married her soul-mate, she is having trouble remembering who exactly that might have been. My mother knows that her body won’t last another seventy-two hours, and she knows that whatever part of her that is still my mother will be gone even sooner.
My mother wants to sleep. She wants to be healed. She wants the pain to go away. She wants more time without being restricted to this bed. She wants to know the women her grandchildren will marry someday. She wants my father to be there with her; she wants my father to never know she could be like this; she wants to be reunited with my father on the other side. She wants a million things, really, but mostly she wants two things. She wants to die as the woman she is and has always been, and she just wants a fucking goddamned glass of water.
As it turns out, she can have neither.
If you’re lucky enough you wouldn’t know this, but in the final days it turns out that a living will and the ability to grant consent does less than one might imagine. By law, the hospice must honor my mother’s wishes and not prolong her life; also by law, they are not allowed to endanger that same life in any way. As it so happens, these two things do not meet along the razor’s edge that one would imagine.
At this point, for example, they cannot by law give my mother water. With her state, the risk is simply too high that she could choke and effectively drown. Astoundingly, I am told, were this to occur it would be over within a few seconds, before anyone knew there was a problem. Because of this, they are required to give her a kind of viscous solution that will slowly travel down her throat and provide hydration for the body should it go down the right pipe, while lessening the odds it will go down the wrong one. My mother despises it. It is painful going down, and even though it can’t drown her it makes her feel as if she were drowning as it slithers through her. Worse, it isn’t refreshing in the way water is to the ever parched. And frankly, she confesses, if she were to quickly drown from it she would be thankful and count it as her last blessing.
She asks for water — begs for it — but they cannot give her any, because to do so would “endanger” her. I try to sneak in cups but am always caught, and the cups are quickly removed.
She finally slips away two nights later. By then, she has forgotten that she was ever married. When my sister talks with her by phone on her last day, my mother tells her that she has no memory of a daughter. I like to think that she might have remembered me at the end, since I was able to physically be with her for much of each day, but I know this is a romantic’s wish. In the end, there probably isn’t enough of my mom left to know who she is, let alone her son. What is likely left is a thing too terrible for me to consider for more than a moment before flinching:
Just the ongoing sensations of pain, confusion, and terror, and no memory that life had ever been anything but.
III.
Over in Off the Cuff yesterday, Kazzy wondered at Dilbert-creator Scott Adam’s angry tirade against those opposed to physician-assisted suicide. Both here and elsewhere, quite a lot of people seem confused by Adams’s tone. I am not one of those people,[1] in large part because of the experience of walking my own mother through her last days.
There will be those who will object to my using my mother’s circumstance, I suspect, on the grounds that when they think of physician-assisted suicide, they are thinking of something entirely different. To which I say: no shit. That’s actually kind of the point.
I know in advance that I will be in the minority here, but to me there’s very little difference between my father being deprived of a viable cancer therapy treatment and my mother not having the option to leave this mortal coil on her own terms:
The objector in each case is largely unconcerned with the particulars of my parents. For each, in fact, my parents’ choices are restricted primarily because of what the instruments that ease their death and suffering “represent” to the objector: the radical 60s hippie, that guy who shows up to work hung over every day, the less likable characters in 1984, some serial killer they saw on a rerun on Millennium, a Bible passage that speaks to them, whatever. And in both cases, of course, any potential decision made by my parents would have zero impact upon the people who would deny them their wishes.
Of course, there are those that simply object to the idea of my mother being able to choose a different way to leave this world on purely moral grounds. And I get that people might feel that way, of course. Mind you, that people would chalk up my mother not wanting to face the terror of losing her very personhood for the odd price of an additional day or two of physical agony as “a moral failing” on her part is part of the reason I can understand Adams’s anger.
In the end, saying there’s no real need for people to be able to legally die on their own terms is the same as saying there’s no real need for cancer patients to be able to legally get a treatment they could go buy illegally if they “really wanted it.” Each position is most often taken with the amazing luxury of having it be little more than a simple abstract thought puzzle.
[1] Well, I don’t follow suit with Adams’ saying he wants others to die a painful death. But I chalk that up to me being me and Scott Adams being Scott Adams.
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Tod, this is really powerful.
My condolences.Report
Ditto.Report
I try to sneak in cups but am always caught, and the cups are quickly removed.
I cannot comprehend this.
This is where a human being would go for a walk.Report
Or where human beings would ease the laws a bit so there were not such strictures forcing the workers to maintain a blockade on the dying patient.Report
Right, because I the thought process that leads to repeatedly confiscating the cups is probably as much about “if she gets water, and it causes a problem, it’s my ass on the line” as it is about the reasons for the prohibition of water in that case. A human being might want to go for a walk, because it is clearly the humane thing to do, but a human being might also want to keep his or her job.Report
And by such things, consent is made. He said bitterly.Report
Perhaps I’m misreading you in this statement Jason. Even in libertopia the law forbids killing people does it not? So even in a libertarian ideal some defining line is required to divide murder from assisted death yes? Certainly in the libertarian idea people would fear for their jobs (perhaps more than ever) so these issues would all remain salient.Report
I don’t know that passing a law permitting physician-assisted suicide would cover the example provided above. If anything, it seems to me that passing a law would result in an explicit understanding that the law not only covers this sort of thing but frowns upon free-lancing.
But I suppose that this is me being crazy again.Report
I’m not sure this is even an issue of criminal law, though it might be one of civil law. From the hospital’s perspective, and perhaps the physicians’ as well, if we let a glass of water through, and it causes real consequences up to and including the patient dying, maybe only a few moments before he or she might have otherwise, the door is potentially opened for a malpractice suit, even if the same relative who brought the water is doing the suing. For the nurses and other staff who might prevent the cup from entering, the issue is what creating that potential door opening might mean for their job security. So you’re right, passing a law related to assisted suicide isn’t going to help. There might be other ways around it, but it’s not really an issue of the law.Report
I have a friend who has an illicit med marijuana permit that he uses to get pot for recreational purposes. It irritates me a bit because he is the empirical evidence that gives strength to the opponents of medical marijuana. But so what? He uses small amounts occasionally, is functional, has a career, is generally law-abiding…his illicit use justifies denying other people treatment? Rush Limbaugh and many others get addicted to painkillers and break the law to get them, but we don’t discuss banning those drugs.
I’m with you on the thinness of the distinction between ending life support and ending life. I wasn’t oresent for my father’s death, but my mother and brother were. My father was struggling badly, and after the second time the medical staff revived him from the brink–or maybe from just beyond it–the doctor took my mom and brother aside and told them they could keep reviving my dad for a while longer, but he wasn’t going to really wake up again or ever leave the hospital bed. And they looked at each other and said, “Dad wouldn’t want this.” So the next time they withheld any rescuscitation efforts. How that is different from cranking up his painkillers to bring on that final trip over the brink by some minutes or hours–less than a day, as it turned out–is a question beyond my ability to answer persuasively.Report
No one would question my moral motives in euthanizing my dog should circumstances motivate that decision. It’s a trivial question that when an animal will only suffer for the rest of its life, it’s time to say goodbye.
Do not my parents deserve to avoid suffering at least as much as does my dog? Did not Tod’s? Do not I own my own life, my own body, to decide for myself when it is time to go? Surely I, and those I love and who love me, deserve at least as good as what my dog will get. Do we not trust that people will not make such choices casually?
I understand well why Mr. Adams was so angry. Even contemplating the possibility of his situation, or those Tod describes with his parents, angers me too.Report
You have all my sympathy Todd, all the sympathy in the world. I lost my Father and my Grandmother to cancer; genetics say that it’ll be either cancer, Alzheimer’s or Parkinson’s that takes me (heart issues wait hopefully in the wings but I am active enough that it remains unlikely).
My Father fought hard against Leukemia and beat it actually. It was technically graft versus host that did him in. He was allergic to all of the anti-rejection medications.
Nan died of lung cancer. It was the blackest days of my young life but compared to your own travails it was mild. She had great trouble breathing but oxygen was provided. There was pain but pain killers were provided. I got to say goodbye and she knew I was there. If I believed in souls I’d say this is an eternal balm on mine.
Also, never let it be said I’m not a liberal, she died in Canada. The hospital admitted her without question, the treatments were provided with polite detached professionalism, we never saw any bills for either my Father or my Grandmother. My Mother (an transplant from America) swears by the Canadian healthcare system the way Christians swear by Jesus.Report
Great. Now I’m going to be choked up all day. Wonderful piece.Report
Tod, Thank you. Beautiful, poignant, powerful. I’m sorry for your losses, and I couldn’t agree with you more. Our societal freak-out about medical marijuana or especially physician-assisted suicide is something that has baffled me for years, and I suspect that it is because people just don’t know. It’s easy to be vehemently against it in the abstract, I think, but the real-life people who are affected? I know few people who would want to persist in a state of extreme suffering, or want to watch people they love suffer in ways you watched your family suffer. I don’t wish the sort of pain you’ve endured on people, but I do think that many of the folks who can’t fathom approving these issues would change their tune were they to have to watch what you have watched.Report
Tod,
My grandfather died in a coma in hospice care in North Carolina. He worked in health insurance most of his working life and established a very strong DNR for himself that absolutely no assistance would be allowed to keep him alive if he were in a coma. This meant even feeding tubes were not allowed. The law on this must be different from state to state, since your mother’s feeding tube was kept in against her wishes. I wonder now what the laws are in my own state, and in other places.Report
Good post Tod
I “enjoyed” the conversation I had with my dad a few months back on how he wanted to die. He explained what he wanted and asked if i was comfortable with it. Comfortable? No, because I know when he leaves the house for hopspice he’s not coming back, but I’m damn sure agreeable for him determinining his own fate rather than be hampered by “rules”. Seeing his body slowly waste away has reinforced my positions on these issues. I’ll make damn sure he gets to go out like he wants if at all possible and I’ve vowed never to see the inside of a nursing home or hospice.Report