Obviously controversial, but compelling—This is a documentary done by fantasy author Terry Pratchett who has the Posterior Cortical Atrophy variant of Alzheimer's. http://vimeo.com/25239708
In the film, Sir Terry contemplates his own potential future decision to use this exit strategy, and he visits with people who've been involved in this process, including two men who do end their lives by this method, at the Swiss facility Dignitas.
It is interesting to see the varied levels of comfort, ranging from very uncomfortable (Sir Terry's personal assistant,) to quite comfortable (the wealthy British man suffering from a motor neuron disease who chooses to die.)
Undoubtedly there are Americans who have ended their lives in Switzerland by this means. I wonder (as one of the British men's wives did,) about any possibility of legal consequences for partners who assist their ill loved ones in reaching the facility. In fact, at the end, the wife questioned how close she should sit to her husband as he drank the "medicament" lest it seem that she was assisting in any way. The process is always recorded on video, I presume for this very legal reason—to demonstrate that the signing of the forms and drinking of the stuff is completely voluntary on the part of the dying person.
This is, for me, something of only notional interest. Unlike Terry Pratchett who seems to remain quite insightful into his condition and the problems it's causing him, Jeff is relatively unaware of his limitations and would not be capable of engineering such a choice himself. Which would, of course, make him ineligible anyway. I can't help thinking though, that if the Jeff of 10 years ago knew what was about to happen to him, he might very well have found this an attractive option. The problem, as Pratchett notes, with Alzheimer's is that there's a very murky territory between "fully competent to decide" and "really ready to end it." By the time you get to the second, it could very well be too late for you to exercise the option. Pratchett observes that he'd almost have to decide to die at a time that seemed premature.
At the moment the government decides when we are allowed to die. Individual freedom does not include the right to die by self determination.
In situations where legal clarity is absent, the government may decide to continue the life of someone by articfial means who would have died. People this is done to are unlikely to have any quality of life whatsoever and may actually be suffering.
The many different religious beliefs have varying philosophies on this. Western people tend to think in supreme being concepts (Jewish, Moslem, and Christian), while the eastern religions are more diverse (Hindu, Buddist, Confusion, Sikh), and the athiests and agnostics in society have no organized voice. This is pertinent since no policy can avoid infringing on some group's rights and America welcomes people from all these groups.
The result is that people who's faith precludes the acceptance of other people's blood have been forced to undergo blood transfusions. While I'm not discussing the benefits of a particular belief system - it's clear why this is a controversial issue from all angles as Emily said.
The resolution of this will inexorably nudge towards the definitions in the constitution which will eventually come down to the indiviual. Just as in what's called gay marrige, no group can withhold constitutional rights that in black and white are for all, from some sub group.
The reason it's a controversial issue is because medical science has progressed in our lifetime to a point where these choices are possible at all and so are beginning to be forced upon us as an issue to face.
Does the individual or the government decide when it is allright for us die? I'm not asking that here. I'm just pointing out that that is the ultimate question on this topic society will be deciding in the years to come.
The degree to which this flies in the face of what is currently considered obvious is illustrated by the wife who is just sitting next to her husband who is ending his life - afraid of being charged with accessory to murder by her government. Yet there is no law in the US by which through inaction, a bystander is guilty of accessory when someone murdered someone else. Only if we 'murder' ourselves.
We've come a long way since burning people at the stake because they were accused of being witches but were actually guilty of not knowing how to hold their breath when the water test came. No one went swimming at all you see because it was considered very unhealthy. People might bathe once a year. So holding your breath when you went under wasn't a conceived notion when you were in the evil water struggling.
Or that more melanine in the skin while being just as pink inside was a basis for treating people like property. Or that women were also property and incapable of thought or running affairs. That neither group deserved to vote or own property themselves.
We are a long chain through Hammurabi, the Greeks, Magna Carta, and the Consititution to name some by which humanity is deciding how society can behave. This issue is no different.
Did you read "Still Alice"? In the beginning of her illness, she had written a plan. When she got to a certain point in her AD, she would take out the plan, follow the instructions, and end it. By the time, she got to "that point", she couldn't follow the directions or remember what she was going to do once she got upstairs to her bedroom.
Still Alice was one of the saddest books I have read. Here was a brilliant woman who devised self testing to evaluate her disease's progress. She had a plan in place for when "the time was right". Of course that time never came because she forgot she had a plan.
That, exactly, would be my fear Joan. As Terry Pratchett noted also, you've got to decide AND act too early.
Another book that comes to mind is "The Leisure Seeker." (Spoiler Alert) At the end of the story, the wife, who herself is apparently terminally ill with cancer, chooses to kill both herself and her AD-stricken husband, by CO poisoning in their RV with its dysfunctional heater. To me, if I also had no life to look forward to, that would seem a reasonable choice. But most of us would not care to kill our spouses and stay alive to go to jail.
I watched the entire video and, like many, felt that the end had to be done too soon. I can see an advanced directive or something, I don't know. This is a very difficult area and one most of us just couldn't handle. Maybe it makes sense, but I would think the survivors might never recover emotionally.
There are prices to pay for BOTH suicide and murder. Whether they are from an earthly government, a post life spiritual environment or Karma. The prices may be harsh or mild or there may even be rewards you just dont know. (what if you killed Hitler in 1938?)
For eons a 'natural' death was the only way to get out without sufferng the penalites or paying the price. Unfortunately medical science mucked it all up. As we worked so hard to extend life we inadverntantly made it more difficult to die. Who would have imagined it could get so difficult?
I long for the days when the doctor walks from the room, places his hand on the shoulder of the family member and says "It's in God's hands now. . ." Wow, that absolved everyone of responsibilty. The death just 'happened' (or not). Now there is always another treatment another procedure. Even the Vet has offered me expensive options to treat our ancient cats(!) Let them die! Naturally . . .
I too loved the Leisure Seekers, the protagonist made a choice, a decision. Good or bad, consequences or not, it was what they BOTH wanted. (well discussed within the story) The choice was made, events were set in motion and they accepted the results. A sad ending but a beautiful one too. Jim
I watched the entire video and I have to admit that I was completely unnerved by the death. At the end the "patient" was comforted by a stranger who held his head to her chest while his wife just sat by his side stroking his hand. Maybe it was the death of a completely lucid, consenting man that disturbed me. I understand that his wife was not completely in agreement with his decision although she went along with it. She only wanted it because he wanted it. I find myself still thinking about it today. I wonder about the wife and how it REALLY affected her.
My mom always said that if she ever started forgetting like her mom did, she would end her life. She had the pistol one of my brother's gave her but never used it - she forgot! That is a joke in our family. Later my brother said the pistol was so rusted it would not have worked. But, I wish she had. To see her in the last years - not just her memory but her body betray her - was so painful. If I would not have gone to jail I would have ended her life for her cause I know she never wanted to be a 'vegetable'. My grandmother never got like that - she was still functional, lived by herself (my aunts would check in on her). She still was able to make quilt tops and work in her gardens. Maybe neither was the best she had once done but she still could do them.
If it were me and not my husband with AD, as soon as I was diagnosed I would have ended it.
I feel almost the same Charlotte. I guess death doesn't scare me because it eventually happens anyway.
This reminds me though, of a line from one of my favorite movies, "Joe Versus the Volcano." In it, one of the weird characters played by Meg Ryan asks Tom Hanks' character if he's ever considered suicide and he replies "Some things take care of themselves. They're not your job, they're not even your business."
Which, in general, I agree with, especially as pertains to someone who is merely "weary of life." But maybe it becomes your business in certain extreme cases such as AD.
I surely do not claim to have the answers on this one. But I'm equally sure I don't blame anyone for taking definitive action.
.......I recently became interested in this subject after it hit home for me as I've described below. I did a search here and found this discussion started by Emily, in July,2011. It was very meaningful for me to read what some of you had to say about it, especially what Jim Crabtree wrote two years before it hit home for him. ------------------------------------------------------------------------------- ......After a long, painful illness, my brother-in-law, John, was terminally ill and on his way out. The hospital had called the family and said they didn't expect him to live through the night. The family had gathered late that night at his bedside to say their last goodbyes and John seemed rather happy that it would soon be over. He was all doped up with pain medication as he bid them farewell. ......His oldest son, Ted, told me that he went back to the hospital the next morning and found that John was still alive. His dad told him, I woke up this morning and said to myself....."Oh shit....I'm still alive". ......Well.....later that day, John got his wish, but it started me thinking about the right to die. I'm sure John would have ended his suffering sooner if he could have done so. They call it suicide and there is no law against suicide, but John, in his condition at that time, didn't have the where-with-all to do it without help. And there is a law against that. They call it assisted suicide. ......I know that some countries around the world, and four of our own states have changed their laws in this regard, But what about the rest of us? ......In my own case, My Dear Helen lived with vascular dementia for her last eight years but it did not appear painful for her, but if it had, I would have wasted no time in putting an end to it. Making myself a criminal. ......In the case of prisoners who have come to realize the horrible atrocities they have committed, and desire nothing more than to just die... and have to devise devious and ingenious ways to kill themselves in their prison cells,...... The government says no....you can't kill yourself....We have to murder you. ......My great aunt, Thelma, who suffered from incurable cancer for years in a nursing home found a way out and just refused to eat or drink, but it took almost a week. Good for her, but if you're a criminal, they have a way to prevent that. ......Now I'm wondering....Am I crazy for thinking we should have a right to die? I know we have a right to live. But isn't dying a part of living? Getting assistance to live when we want to live is no problem, But how about assistance in dying when we want to die?
I know up here we just recently had a lady...Gloria Taylor, she had ALS and she went right up to the Supreme Court of Canada and they approved for her to have assisted suicide. She died before she got to that point and then the gov't went to court and they over turned their decision around or was it before but they let her ruling stand? Her comment was she didn't want the gov't in her bedroom controlling when she would and how she wanted to end her life.
I think as health care costs sore that the gov't will rethink their objection of assisted suicide and it will become a right for the citizens of this country. Or Justin Trudeau becomes Prime Minister.
I know with the Representation Agreement that I have say on what medical treatment hubby receives now and if he were to become ill I would tell them to just make him comfortable. He does not what our last memories of him as a drooling nothing that has no control over his bodily functions. Let him go with dignity.
The second friend I lost to cancer in his early 50's was screaming in pain on full morphine when he finally died of stomach cancer. He never smoked, hardly drank, and was a gym rat in sublime shape. The point is he had no rights because the state forced him to die that way.
I can't follow what cruelty we inflicted on that man because the state does not defend freedom and liberty for all. It decides instead that all must suffer whatever they face until it kills them.
The state also decides that anyone who wishes to end their life must be insane. That's dark ages thinking that people wracked in pain deserve more suffering and if they don't agree then they are insane.
This will be decided within a few decades I think and it will spread out of europe initally. It is likely to go the way of the other medieval ideas held such as that people can be property or that rights can be subdivided and witheld from groups we don't like.
I doubt I will see it in my lifetime and I'm not bothered by that. There are all kinds of dangers out there and we never know when an accident can happen in any number of ways unless Wolf is diagnosed with AD and then you can mark it on your calendar.
I think humans are both fabulous and pathetic. Fortunately they rarely get in the way. I wonder how many points I'll lose compared to giving up my life for years for my wife? Didn't want to burden others with my care. What are two those point wise? Why is there never a brochure???