Millions of people are suffering from dementia that lasts years. How can this be right?

Its funny to me how this topic continually comes up on this forum. Well not funny I guess considering most of the caregivers on here are taking care of loved ones with dementia.

Consider this: My Mom suddenly became ill, became unconscious, was rushed to the hospital. Never really regained consciousness but could of been kept alive with fluids, lifesaving measures etc. But the doctor on call was adamant that we should take her off all medication, desist fluids, and let nature take its course. With morphine given at regular intervals to ease any discomfort she might be experiencing. Now tell me how that is any different than assisted suicide. I mean if you have the means to prolong someones life but instead cut off all fluids, medicine, nutrition and let them slowly die, whats the difference. I don't see one.
In this case I believe it was the right decision and my Mom would of had no quality of life if she had been allowed to continue treatment.

I know this is a very touchy subject and I've said it before and I'll say it again. You cannot decide this with a single brush stroke. Every case is individual. If you start making this a legislative decision across the board there is too much room for people to take advantage of the system and manipulate it for their own perhaps devious reasons.

There should be a board that decides individually for every case. Weighing the pros and cons of every situation and because that would probably be very expensive and require too much manpower I doubt that it will ever happen in a way that will satisfy everyone.

I know that there are people on this site who dislike the religious point of view but I have to say that I trust that God will decide when its time for me to die and it will happen when its supposed to happen.

And therein lie the problem Vstefans and I do agree with you the road is a fine line between INDIVIDUAL choice and MURDER and that is why I have been very specific in my advanced directive. However - everyone has to also realise that to be rational there will or certainly could be lobbyists that will argue that the law is not being applied fairly across the board

Let me explain:

Assume abortion is legal where you are - then no issue over abortion can occur - it is applied equitably

BUT

Assume it is ILLEGAL where you are unless the foetus indicates a disability is present - IF you allow this then you have already crossed the divide as to whose choice it is because you have already said able bodied people or potential able bodied people have rights that disabled ones don't have. AND THAT IS THE ISSUE - because no-one has the right to decide life or death over another purely on society's definition of ability and disability - if they did then Stephen Hawking would not be alive today

Once you have that divide you can erode the edges by
not assisting disabled babies to take their first breath or
not medicating them when as babies they get sick...

then where do you end?

by sterilising disabled people to prevent continuation of genetic disorders?
then on to sterilising all disabled people or healthy people who have had disabled children?
perhaps send them away?
and where would we like them to go?

Auschwitz? Just a little food for thought people.

I am absolutely for the right to die with dignity and I have made no bones about it FOR ME, I also one thousand per cent would protect the rights of people who have chosen not to make that decision or to make a different decision, because I DONT HAVE THE RIGHT TO ACT OTHERWISE nor would I want that right or responsibility

In general it is OK not to prolong life if that is not wanted - and any competent adult may refuse essentially any treatment even if they will definitely die without it - but to actively take the life of someone who "we" judge to have a poor quality or value of life is to invite disaster in health care and provision for people with any kind of special needs. People will fear going to the doctor because death may become a recommended treatment, with no other measures covered for those who go against recommendations. The spectrum of what is considered good enough quality of life to be allowed or supported to live will get narrower and narrower. Psychiatrists and the rest of us in health care, instead of talking someone out of suicide, could become required to help achieve it as painlessly as possible. There are already moves in Canada to essentially force health care providers to provide services requested even against their own conscience, and how anyone would make a valid distinction between medical judgement and conscience in difficult cases is beyond me.

More disturbing still, to me - I had a patient on consult service with a disease that our field's literature supports as being compatible with a very good quality of life by certain measures of that - and a pulmonologist who happens to believe that no one should be put on long term ventilator support which this condition requires stated that he thought nothing should be done and would not even help a family get non-invasive ventilation that they wanted. I did not get to find out what eventually happened, but the family was able to exercise options to get into a different facility. Plus there have been high profile cases where brain death was wrongly diagnosed, and again families had to fight for the right to continue life support for a loved one.

People in this world who have the power to do so have killed other people for being annoying or inconvenient, and euthanasia for dementia opens that door wider than ever. I don't think anyone on either side of this debate is heartless though. It is not necessarily easy to advocate for the sacredness of human life when doing so becomes costly and burdensome to both a person who may be suffering and cannot have all suffering instantly and totally relieved and a caregiver who cares and has to watch and provide whatever support is needed and helpful until the natural end - and yet if we fail to do that, the value of all of our lives is at stake. Most of us at some point will become less able and less useful to society than we are today, and yet, that should not mean our lives should be ended actively or that we have less right to live on and get and give what we can in life than when we were at our most productive. As one person put it - "OK, I was made in the image of God - I have become disabled - does that mean I am not in His image any more?"

Send isn't it weird how writing I want to live would be adhered to but writing I don't want to live would send you straight to a psych ward!

On my refrigerator, posted for any paramedic to see, written in red:
" FILE OF LIFE"
Medications; diagnosis; DNR-that's not what you want to eat when you get to the hospital; etc. is usually placed in a clear envelope. Emergency personnel are trained to seek this FILE OF LIFE out.

Mine just says: I WANT TO LIVE!

Windy - maybe more ahead of his time than odd. Or maybe odd. But so was Eisenstein, Darwin, Freud, Poe...

OH yeah....Kevorkian, Dr death and his lawyer, Jeffery Feiger. I've always agreed with the concept of assited suicide but these guys were too wacky to be taken seriously. Rather than bring forth any intelligent discussion of the issue they doomed it forevermore.

Okay - it was called "You Don't Know Jack" and it was an HBO movie. Pacino got an Emmy for his portrayal.

Being the movie geek I am - I can't help but say Al Pacino did an excellent job playing him. Can't recall the movies name but it's worth a watch.

Jack Kevorkian was vilified in the media and made out to be some kind of ghoulish "Dr Death" who went around murdering people, and at the time I swallowed that line. I am still adamantly against euthanasia, but in my understanding what Kevorkian offered was much closer to assisted dying than euthanasia.
I have heard from some of the people that do home care how patients will try to secretly hoard a stash of pills in case they one day need them, as if they should be ashamed. I think to have to plan and execute that plan in secret or to have to ask a family member for help is what would cause the most harm to family left behind. If we felt free to discuss things with our family and health care team and put a plan into place openly then I think a lot of the guilt can be taken out of the equation.

I think if people are in a terminal state and in great pain then shortening their death rather than endlessly prolonging it for no good purpose other than that the doctors can is something I find distasteful but know it happens and happens a lot.

Can I just flip this for a moment

If the doctors could keep your loved one alive for years but only through heavy medication and in a virtual comatose state in order that they can cash in on them living would you think this was OK? See this is where I really have a problem.

For me I am very clear no way Jose I don't want to live - that's my choice , but for others?..... I don't want to have to make those choices but there are things to be considered here.

I don't know how it works in the states but I wonder if the same end of life care plans are put in place for those with vast sums of money as for those who have nothing. If so then I feel a little better - if not then you already have the beginnings of a financially based euthanisation programme whether or not you actually agreed to one. And that is something I find abhorrent even though I approve and want for myself to die with dignity. Just give me the meds and let me go peacefully.

You go, pamstrgma! I'll take someone who tells it like it is over someone blowing smoke up my skirt any day of the week! Captain - if you read this be gentel over the smoke up my skirt reference!

Oh dang, that's harsh Pam, throw in a few cuss words and you'd rate right up there with Captain!
And here I promised myself I wouldn't get drawn into this debate again....

No, it would not make sense to euthanize them. If it did, we would start with people void of feelings for others, such as Kaydi12 and bill collectors.

Millions of people suffered from polio for many many years. Millions suffer from MS or COPD or schizophrenia or narcissism. In many cases they have decent quality of life; in others the quality of their lives is questionable and they sure can be a burden to society and/or their loved ones.

As vstefans and others point out, determining quality of life is very subjective and the trickiest part of this whole topic is who subjectively determines it?

Early in his dementia my husband would have eagerly signed up for assisted suicide. I'm glad it wasn't available. (I flatly refused to participate in that train of thought.) He had another nine years of mostly pleasant life with lots of high-quality episodes. He was mostly lucid (with lots of confusion) right up to his death, which occurred in our bedroom, with us holding hands.I am glad to have had those additional years with him, and I think he was too.

Death is such a permanent resolution. Life is such an unpredictable process.

That is a broken grin at the end of the sentence. :-D

kimber, what you said is so true. My mother has had dementia for over 10 years now most likely, but she doesn't wish to be dead. She may make everyone around her wish they were, but she is still enjoying life. :-D

For me - the potential for abuse or pressuring those who don't want to die but who society views as "past their useful lives" is so great that in only support right to die in the event of terminal illness. We don't know the "why" of why there are so many people with dementia who live for so many years and we perceive them "better off dead". I'm not yet ready to go that far. Perhaps that is what makes us human - we feel called to care for those who cannot care for themselves and yet we don't decide that they should die. Good topic

I haven't sited a movie quote in a while but here's one: "suicide is the ultimate act of self-absorption." - The Big Chill. I use to be very anti suicide. Largely because of what it does to the people left behind. My brother had a good friend who gassed himself in the family RV after his gambling addition took every cent his family had, he had huge debts, lost his job unbeknownst to his wife and the house was going into foreclosure - also unbeknownst to his wife. He left a wife and two high school aged kids. My brother still struggles with the guilt "I should have known..." Here in Oregon we were the first to allow Death with Dignity and while still against suicide I recognize and agree there is a place for allowing the terminally ill to choose to end their suffering. And talk about thoses left behind - often left penniless and damaged both physically and certainly mentally, most of us know first hand the damage "the long goodbye" can do. Btw - isn't that a ridculously charming phrase for the horror that is dementia? A few of my parents friends chose Death with Dignity - one was a man with brain cancer. Sparing his family the continuing devastation of watching his disease torture and ravage him was defiantly a most un- self absorbed act!

Who am I to question someones choice pertaining to their own life.. I'm not the one looking at deaths doorstep..

I think having my loved ones hanging around my bed is cruel..

It takes a long time to get that image out of your head.. I've seen it waaay more than I wanted to...

At least you have gun laws over there Stacey we don't even have that. I quite fancied the totally green death shoot meself and fall overboard in shark infested waters - low cost green solution - except for one minor detail ........I get very very seasick and have to take to my bed!!!!!

It is such a slippery slope, I know my Mother was screaming in agony, that the pain from Cancer which had metastasized from her uterine Cancer (she had had a radical hysterectomy, and extensive radiation treatment), to her left pelvic bones to the point of multiple fractures, some healed, but other bones continuing to disintigrate, possibly from over radiation, she was in massive pain, and was begging to die until her Morphine was at an extremely high level to somewhat manage her pain, and at the end, with her body actively dying, she Was snowed unconscious. But for many days during that interim time, that she was begging to die, no dementia, still lucid that had there been such a form, she would have signed it, that perfect little device or if she had access to her pain pills, she herself would have done it, or gobbled them, however my sister kept her from them, a personal and religious decision, that sometimes she even regrets having taken that decision from her. For right now, we don't have a perfect legal option, but I do see one becoming available in the future, as Jude and so many people have stated to me, it is our life, and we should be able to plan IN ADVANCE, for the Right to decide when and if we can take our own life if we choose. That perfect device would definitely help! To me, it always comes down to the ones that we've left behind, the burden of guilt they might feel if we choose such a plan. A very slippery slope indeed.

My children DO know vstefans and they don't like it but they accept my right to make my own decisions about my life. They also know I have overruled any interference on that from them. And no I don't run my own ISP but I can turn my PC off when I want to ;-) xx

I refuse completely to be told by professionals (who have no idea of the life I have led) what I have to endure at the end of my life. I don't WANT to be cared for my others and I believe that FOR ME I should have the RIGHT to die in a dignified way not to end up tied to machines that I cannot turn off. My life - my right.

No offence intended at all vstefans and I 100% uphold other people's views on their own lives but it just is not what I want and I truly believe that the individual should have the right to make decisions for themselves while they can.

oh, Jude...really - think from the other side, think about someone who loves you and how they might feel if they knew you preferred death to receiving care from them...and acted on that. There should be no shame in needing care, after all none of us are really totally independent in today's world. Unless you are running your own ISP single handed you could not even be posting on here without a little interdependence.

i just lost a friend , actually slightly younger than myself . he died from diabetes and liver cancer . he confided in me that he had insulin and knew how to use it -- indicating he'd end his own life if the suffering got too intense .
he didnt do that . he wasted away and his body's biological mechanisms ( imo ) dulled his senses and caused his death to be tolerable if not comfortable .
comfort meds are a science , again ( imo ) . we were instructed when my mother died , since she was in a state of terminal agitation , that she was not to return to consciousness no matter how much liquid morphine that required .
her body was done but she didnt have to be there to endure the end of life .
it was a morphine overdose that ended her but she liked opiates so she went out gellin like magellan ..
like a pre exonerated felon ..

I just saw this on 60 minutes...

One women had terminal cancer, she drank the drink and within 5 minutes she passed peacefully in bed wirh her husband... Her choice..

That's what I would do... No suffering, while loved ones all hang around my bed staring at me waiting for my last breath..

No stopping death whens it's standing at the door...

Oh I have a sore bottom from sitting on the fence on this one. I truly believe that for me (again only for me) because I refuse to have people looking after me and doing for me because I can't do for myself, I have written an advanced directive... I would like assisted suicide but if I couldn't manage it I would hope someone would invent a device whereby I could manage it for myself...it's been done before.

Euthanasia is whole different ball game and although I approve of it wholeheartedly in some very specific cases - terminal and in extreme pain but not necessarily limited to that, I don't approve of it as a legal tool to rid a country of its financial pressures (however you choose to wrap that one up).

I believe in the right to die with dignity and I believe that if I am ever diagnosed with a terminal illness I should have the right to have a final party with my loved ones in my own country and that I should be allowed to die in my own country with, if that is the way my family agrees, my family around me although I would prefer to die alone, having given them all a last hug goodbye.

As for quality of life. While I can do for myself I have quality - when I can't just let me go because I don't want that for me.

One person deciding for another quality of life when determining whether life is worth living is a very, very slippery slope.

Kaydi. I think that's the point - someone else decides - and people start getting involuntary euthanasia because someone else, rightly or wrongly decides their life must not be worth living, or worse still is not worth supporting. Respect for human life does downhill from there for all of us. The price of preserving respect for human life is that some of us struggle to provide for the comfort of loved ones or ourselves in any way possible while waiting for natural death to occur.

So who decides in the countries where it's legal? Is there anyone who can honestly say that YOU would want to continue with life once there is no quality left? I know I certainly wouldn't. Maybe dementia patients could ask for euthanasia, while they still have mental capacity, for their life to be ended once the quality is gone?