Choosing to die

When I was around 13 we heard that my grandmother had found my uncle John hanging in the woodshed. This was pretty traumatic for his whole family, but no one talked to “a kid” about what he had been going through and what had led him to taking that step, and I still don’t know. About the only thing I know about it was that it was horrible for my grandmother.

I’ve lived for about fifty years since then, and have seen many people I know die, and it’s never a time of celebration. We miss them, and wish they could have stayed around. When my mother was diagnosed with liver cancer, and given 3-6 months to live, she had to call all her kids and tell them, what a wretched job! What she told me (with a rather exasperated note in her voice) was “We all die, dear!” which I think just about sums it up. It’s not like anything we are going to do is going to change that we all end up dead, so all we can really work on is how we live. The only choices we get are about the manner of our deaths (and Mother did pretty well).

A lot of what I’ve spent the last fifty years or so studying is what people call the occult, “that which we cannot know”. We can compare what others have said, and look for patterns. Many people feel that they are in contact with those who’ve died. Most cultures have people who do this, and they express faith in a continuation of our lives. Recently there’s been a lot of study of dear death experiences, and it all seems to agree that death is a pretty nice thing. People who “come back” from NDEs generally are doing so because they feel needed by others here, but look forward to dying when the time comes. Mystics throughout the ages tell us that after death we go to a place of love and unification with God. I’ll admit that we haven’t got clear scientific evidence about it, but it seems that those who think the afterlife is pretty good are in the majority, and I’m comfortable with that. While not interested in dying in the foreseeable future, I’m certainly not afraid of dying, and consider that it is a great alternative to just getting older and older and sicker and sicker.

I remember pouring Reiki into my brother as he was dying of cancer, and how the best thing we could do for him after a while was push the button on his morphine pump every 6 minutes (as often as it would work) so that he could get a freaking two hours of sleep without the pain waking him up. I remember when my husband had to wait for a nurse to ask a resident to call for meds that had to get sent up from the pharmacy, just to stop the pain. Time after time. Why, I wonder, do we feel that it is so freaking important to be alive that we cannot give people enough medication so that being alive doesn’t equal suffering? It’s not like any of these people were going to get better, or lose much if they did die sooner.

My friend Lisa’s mother lived on as a near vegetable, consuming the time and energy of her family, after a doctor ignored her DNR request. The only one who felt better about it was the doctor. Lisa says that when the doctor “consoled” her father that he’d had an extra year, she’d never seen her father angrier in his life. He hadn’t given the family any more time with their mother, but a year of suffering for the whole family.

There are now people fighting strongly for the right to choose when to die. Some people seem horrified, but I understand it.  Ælfwine decided to go along with the chemo treatments, but after he had run through the cycles of treatments and remissions, I counted up the days that he’d spent at home instead of in the hospital and got just under 90 days- the amount of time he’d been told he’d live without treatment. I don’t think any of that time,  essentially as a guinea pig for the medical community, should be counted as “extending” his life. He didn’t get anything done that he wanted to during that time. I learned a lot, and met some lovely, caring people. But I could have learned other things, and met other wonderful people. He died anyway, and suffered a lot. His only feeling of achievement was that MAYBE his case might show the rehab doctors the value of adding nutritional supplements to the post Guillain-Barre treatment. He had a great attitude and got the most out of whatever was given him, and I’m not sure that if he’d had the option of stopping earlier he’d have taken it. But I think he should have had the option. Likewise when the doctor was giving my father his options after his diagnosis of Pancreatic cancer, he was told that chemo would “extend” his life. The doctor in no way even hinted that the choice was probably 5 months with constant visits to the hospital, pain, vomiting and diarrhea, or three months sitting around doing whatever he felt like (which we could discover by looking it up). Without that information, I can hardly consider that what my father gave was “informed consent”. More days don’t count for much if they are no use to you.

I think it’s reasonable to give patients full information, and full control of their options. I am glad that a few states are allowing doctors to help patients in this way, and I believe some countries have found ways they feel balance the risks with the benefits.

My understanding of the way it is done in the Netherlands was that a terminal patient could request a lethal dose to keep by his or her bed in case she decided she wanted it, and yet very few of those who got it dispensed (after doctors had determined that they were rational enough to be given the option) actually used it. But many said that it was a great comfort to them, to know that when they were in great pain to know that it was in their power to stop it if THEY chose to do so. Pain studies show that a patients feelings about the pain have a huge impact on how much it hurts. The benefit of giving the patients control seems to strongly outweigh the risks.

One of the greatest risks, and a real one, people worry about is that once we allow people to kill themselves, once dying is legal, then we’ll stop resisting death so much. That others will start pushing their views onto the patient and perhaps social pressure will make someone kill themselves who didn’t want to. This is a possibility. But at the same time, can we not acknowledge that under the current system, everyone is being forced to go along with the choices of others whether they agree with them or not? I recently watched a Youtube Video where a patient with a brain tumor urged another (Brittany Maynard) to not choose to die. Brittany chose to die when it got too bad. This other patient urged her to live as long as possible. Did she feel that in some way Maynard’s choice invalidated hers? If we can choose to live differently, why can we not respect others choices about how to die?  Why should anyone else get to decide how much is or isn’t “too much suffering” for someone else? Why should anyone else get to decide that for me? Another well known Right to Die as you Choose advocate is Terry Pratchett. While speaking in favor of the right to die as you choose, he’s also supporting Alzheimer’s research (what’s killing him), as well as getting as much written as he can. That seems the right way to deal with it, but he has money, so he has more ability to fight the system than most of us. Why should other people be able to force you to suffer if you don’t want to?

As Maynard said, choosing your mode of death being confused with suicide. People who try to kill themselves are assumed to be making a bad choice, and sometimes it is. I believe that it’s likely that most people who kill themselves are unaware of resources that might have helped them deal with their problems. But how dare people act like they are being irrational when the very culture that is condemning them is often the same one that is blaming them for their problems in the first place, and often causing them. When the government spends more money trying to force homeless people to “go away” rather than helping them find heat, food, shelter, a FRAKKING ADDRESS (that is required to get almost any help), why would anyone expect that help is forthcoming? Anywhere?

You can live with almost anything except hope, but if you can’t see any way out of your problems, whether there is bliss on the other side of death or simply “not hurting/being cold/hungry/lonely/in pain” anymore, death is a rational response.

I guess what I’m saying is that it’s too easy to simply dismiss anyone who doesn’t want to live as “crazy” and therefore not worth listening to. It’s time we started to listen to what they have to say, because if we don’t do that, there is no way we can help them. Maybe we can, and maybe we can’t. And if we can’t, maybe we should respect their choices, as we’d like to have our own choices respected.

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