letter to family

dreama · 09-26-2009, 06:18 PM

Quote:

My dear family,

As I write to you in September 2009, I am still physically healthy. But since I expect to die in Netherlands-wannabee Quebec, let me be perfectly clear about my wishes in the event that euthanasia has been decriminalized by the time I am suffering a terminal illness, or am languishing in what appears to be intractable chronic pain.

I do not want to be bumped off. I can't state the case more unequivocally than that. I don't care if I am a "burden" to you (you were once to me, that's how life works); I don't care how long it takes me to die, and how inconvenient that is to the medical system; and I don't care how selfless an example other parents are setting in graciously exiting the world for their dependents' sake before nature intended.

In particular, do not succumb to the now odiously-debased "dignity" argument you'll doubtless hear from euthanasia advocates. I daresay serial rapist and murderer Paul Bernardo's purposeless,

parasitical lifetime imprisonment is not very "dignified," and to many Canadians a life "not worth living." But if the death penalty was not offered him as a "treatment option" for his incurable moral degeneracy out of respect for the sanctity of even sociopathic human life, the rest of us deserve no less for our innocent physical decrepitude.

So make it easy on yourselves by insisting I be attended by a doctor adamantly opposed on principle to such an "option." (I have a few names.)

My deathbed physician should be familiar with a 2002 John Hopkins University study indicating that although 45% of terminally ill cancer subjects voiced a wish to die (i. e., subjects meeting the standards of Bill C-384), the wish turned out to be transient in all but 8% of the cases. If all 45% had been euthanized, we wouldn't know that. So even if I say I want to die, take that as a cry for comfort, reassurance or pain relief, which it almost certainly will be.

My preferred physician would be one disgusted in any case by the notion of doctor-driven euthanasia, but especially so because it is a slippery slope.

He or she would be aware that in the Netherlands, where euthanasia has been legal since 2000, there is no explicit request for it from the patient -- as the law intended -- in fully 40% of euthanasia cases. He or she would also be aware that although Dutch law prohibits euthanasia in children under 12, the Groningen Protocol has nevertheless normalized the euthanasia of certain kinds of handicapped newborns.

Do not fall for any claptrap about what "your mother would have wanted." Read my lips: Your mother does not want to be made to feel it is her duty to die before nature decrees, so that others may be freed from care and responsibility, a subtle shift that inevitably follows upon an established "right."

Mind, your mother is no martyr. If it's hopeless, no heroic measures, please. Oh yes, and she wants to die as painlessly as possible. If this means raiding the entire arsenal of available analgesics and even sedatives whose side effect is to facilitate an easier death, so be it.

Intention is all. I want an unequivocal healer-patient dynamic with my doctor. His or her intention should be to kill my pain, not me. Finally, my doctor should be well versed in palliative care techniques, improving all the time.

I feel much better now, and hope, my dear ones, that you do too. You just got a very nice gift: certainty about my dying wishes. And I just gave myself two gifts: peace of mind -- and several hundred thousand National Post-reading witnesses.

Barbara Kay: Memo to my children - Full Comment

jillio · 09-26-2009, 06:38 PM

Isn't it wonderful that this person has a choice regarding their end of life directives? But for that choice to be available, others that make different choices must be allowed to choose what they will. You cannot retain your choice without allowing others to make their choices as well.

Babyblue · 09-26-2009, 08:24 PM

Quote:

Originally Posted by jillio

Isn't it wonderful that this person has a choice regarding their end of life directives? But for that choice to be available, others that make different choices must be allowed to choose what they will. You cannot retain your choice without allowing others to make their choices as well.

Family members can still object to certain things in a will on someones dying wish.

I may be wrong.. But I had a family member that had a DNR... The daughter objected to it... The medical professional complied. Started working on her... Then the sons came in... Said NO!! This is not what Mom Wanted.. Let her go!! They did...

Confused about that...

jillio · 09-26-2009, 09:02 PM

Quote:

Originally Posted by Babyblue

Family members can still object to certain things in a will on someones dying wish.

I may be wrong.. But I had a family member that had a DNR... The daughter objected to it... The medical professional complied. Started working on her... Then the sons came in... Said NO!! This is not what Mom Wanted.. Let her go!! They did...

Confused about that...

It needs to be notarized and a copy kept with your lawyer. That makes it legally binding.

Lighthouse77 · 09-26-2009, 09:52 PM

My mother had DNR as well. Some of the family objected it. But I told the doctor just make her dying as painless as possible.

LDNanna · 09-27-2009, 01:59 AM

Yes, its best to have your own choice.

For me, the polar opposite. It is on file with md, hospital, all kids and spouse know and my lawyer - who is a very stern fella. Wish it was on our drivers license with my donor info. I dont want that type decision on my kin. They should never wonder if they made the right choice.

Ive seen too many folks beg for death as a release from chronic, incurable and severe pain. I never want that, nor to be warehoused in an elder care center. In my former life I did some hospital, nursing home and hospice work. Pass the morphine, please!

CJB · 09-27-2009, 02:29 AM

I'm one of those people that would want to be euthanized and would elect DNR given the circumstances.

jillio · 09-27-2009, 06:23 AM

Quote:

Originally Posted by LDNanna

Yes, its best to have your own choice.

For me, the polar opposite. It is on file with md, hospital, all kids and spouse know and my lawyer - who is a very stern fella. Wish it was on our drivers license with my donor info. I dont want that type decision on my kin. They should never wonder if they made the right choice.

Ive seen too many folks beg for death as a release from chronic, incurable and severe pain. I never want that, nor to be warehoused in an elder care center. In my former life I did some hospital, nursing home and hospice work. Pass the morphine, please!

I couldn't agree with you more, and have an advance directive on file, as well. My nephew has been instructed to see that it is carried out, in the event that my son is unable to do so because of the emotion involved.

dreama · 09-27-2009, 05:23 PM

You never know until it happens. My mom once told me that she didn't want to be a burden on us so would rather we knocked her off if anything happened to her.

When something did happen, it was a differant story. My dad told me that she was clinging to her last week of life. Even though she had cancer and was in a lot of pain.

It's one of the reasons father and I are BOTH against legalising Euthanasia.

People change their minds you know.

jillio · 09-27-2009, 11:47 PM

Quote:

Originally Posted by dreama

You never know until it happens. My mom once told me that she didn't want to be a burden on us so would rather we knocked her off if anything happened to her.

When something did happen, it was a differant story. My dad told me that she was clinging to her last week of life. Even though she had cancer and was in a lot of pain.

It's one of the reasons father and I are BOTH against legalising Euthanasia.

People change their minds you know.

If they change their minds, they can change their directive. No biggie.

dreama · 09-28-2009, 12:11 AM

Quote:

Originally Posted by jillio

If they change their minds, they can change their directive. No biggie.

Only if they can still communicate.

jillio · 09-28-2009, 12:12 AM

Quote:

Originally Posted by dreama

Only if they can still communicate.

If they can't communicate, chances are they don't have the cognitive function to rationally think it through it and change their mind.

dreama · 09-28-2009, 12:24 AM

Not neccessarily. I have problems communicating with people who don't do deafblind manual. Doesn't mean I'm thick.

A person could have become paralised without speech but still be able to think, only the relatives don't know how to get through.

souggy · 09-28-2009, 01:30 AM

Quote:

Originally Posted by dreama

Not neccessarily. I have problems communicating with people who don't do deafblind manual. Doesn't mean I'm thick.

A person could have become paralised without speech but still be able to think, only the relatives don't know how to get through.

Locked-in Syndrome?

dreama 1, jilio 0

jillio · 09-28-2009, 02:00 PM

Quote:

Originally Posted by dreama

Not neccessarily. I have problems communicating with people who don't do deafblind manual. Doesn't mean I'm thick.

A person could have become paralised without speech but still be able to think, only the relatives don't know how to get through.

I didn't mean "thick". I meant suffering congitive impairment as the result of their terminal disease process.

And you CAN communicate. You might need a terp to do so, but you can still communicate your wishes. Hardly the same as being unable to communicate one's wishes.

There are communication techniques that would allow said individual to communicate their wishes. A communication board is the first thing that comes to mind. As cognitive function is tested in these cases, there are ways to determine whether that individual has cognition, or if they are in a vegetative state (without cognition).

Change the score, souggy! LOL.

dreama · 09-28-2009, 03:01 PM

Jilli: There are devices available to help people communicate but they are not always made readily available. Hence I've been off the phone since I was unable to use a large print Minicom.

I'd have been off the computer too if I hadn't bought myself a braille display.

So your assumsion that the disabled automatically get whatever is needed is totally irodious.

And no it is no differant for the terminally ill. When mother went home for easter she needed a ventilator. The hospital did not automatically provide gas for her. My dad had to go round to all the chemists to find some.

She died shortly after running out of gas in the early hours of the morning. Dad tried to ring an ambulance for her but it was too late by then.

If such a simple thing as a braille computer or gas for a ventilator isn't automatically be provided for, do you seriously expect a special communication system with head set or puff system would be?

You've got to remember that not all of their relatives will know of the existance of such items. Even if they do they might not know where to get them from. They might not even bother if they've already got their relatives request not to keep them going. I mean why pay several thousand dollars to 'hear' their relatives updated request when they've already decided to kill them?

CJB · 09-28-2009, 06:51 PM

Quote:

Originally Posted by dreama

Jilli: There are devices available to help people communicate but they are not always made readily available. Hence I've been off the phone since I was unable to use a large print Minicom.

I'd have been off the computer too if I hadn't bought myself a braille display.

A bit

sorry, but how did you afford a braille display? I would love to get one. Thanks.

dreama · 09-28-2009, 09:07 PM

If you don't drink, smoke, go for meals out, use taxi's, and stick to cheap food, you would be surprised how much you can save up.
Reading and walking are free. computer expenses aren't that pricy either unless you need braille. Zoom just costs 300 pounds.
Besides I'm used to a saving for expensive items. I was brought up poor, and now I have more money then I ever had growing up.

The braille Focus cost me 3 thousand pounds.

jillio · 09-28-2009, 09:17 PM

Quote:

Originally Posted by dreama

Jilli: There are devices available to help people communicate but they are not always made readily available. Hence I've been off the phone since I was unable to use a large print Minicom.

I'd have been off the computer too if I hadn't bought myself a braille display.

So your assumsion that the disabled automatically get whatever is needed is totally irodious.

And no it is no differant for the terminally ill. When mother went home for easter she needed a ventilator. The hospital did not automatically provide gas for her. My dad had to go round to all the chemists to find some.

She died shortly after running out of gas in the early hours of the morning. Dad tried to ring an ambulance for her but it was too late by then.

If such a simple thing as a braille computer or gas for a ventilator isn't automatically be provided for, do you seriously expect a special communication system with head set or puff system would be?

You've got to remember that not all of their relatives will know of the existance of such items. Even if they do they might not know where to get them from. They might not even bother if they've already got their relatives request not to keep them going. I mean why pay several thousand dollars to 'hear' their relatives updated request when they've already decided to kill them?

You are talking about every day situations. In the situation where a patient is quickly approaching death, it would first be determined whether or not they had cognition. Secondly, it would be determined if they had an advance directive on file. Thirdly, provided they had cognition, they would be asked, and given the means necessary, to communicate that they wish the advance directive to stand. If they don't have cognition, the advance directive automatically stands. In fact, the reason it is call "advance directive" is because it is done to alleviate another family member making decisions when the individual cannot do so themselves. If the individual still possesses cognition, the advance directive does not kick in.

I do not assume that the disabled automatically get what is needed. I have dealt with provision of accommodation to know that isn't true. However, when you are talking advance directives, and end of life decisions, you are not simply talking about accommodations. Every care is taken to insure that the patient is not only stable enough to make such a decision, but that they understand all of the implications prior to the advance directive being carried out. Physicians nor hospitals take this as lightly as you seem to think they do.

CJB · 09-28-2009, 09:27 PM

Quote:

Originally Posted by dreama

If you don't drink, smoke, go for meals out, use taxi's, and stick to cheap food, you would be surprised how much you can save up.
Reading and walking are free. computer expenses aren't that pricy either unless you need braille. Zoom just costs 300 pounds.
Besides I'm used to a saving for expensive items. I was brought up poor, and now I have more money then I ever had growing up.

The braille Focus cost me 3 thousand pounds.

Oh I see, you bought it yourself. My wife and I are good at saving up, but I was just curious if blind services paid for it or something since you're deafblind. But you answered my question anyway.

dreama · 09-28-2009, 09:32 PM

Quote:

Originally Posted by jillio

Every care is taken to insure that the patient is not only stable enough to make such a decision, but that they understand all of the implications prior to the advance directive being carried out. Physicians nor hospitals take this as lightly as you seem to think they do.

That's a very nieve assumtion to make.

jillio · 09-28-2009, 10:54 PM

Quote:

Originally Posted by dreama

That's a very nieve assumtion to make.

It is not an assumption, nor is it naive. I have, in fact, been through this with both of my parents, and my brother. All 3 had advance directives, and provided me with their medical power of attorney. It was confirmed several times that they did not want to change their directive during their illnesses. Therefore, when they all lapsed into a coma, at the inevitable end of their life, the decision was already made. The directive was followed. I know how empathic the doctors were during this time. I know how empathic the nursing staff was at this time. I know how empathic the hospice workers were at this time. I have directly experienced it with the death of 3 family members.

I have also experienced the death of other family members and friends where an advance directive was not in place. Family members were forced into the position of having to make decisions without being certain of what their loved one would want in that situation. I have watched those people struggle with their decision, and I have watched them suffer over it long after their loved one was dead and buried.

I am grateful, indeed, that both of my parents and my brother were so caring and so loving as to have an advance directive in place. By doing so, they saved me the suffering I have seen so many others have to go through. My parents, nor my brother, wanted me to endure the pain that their not having an advance directive would have brought to me, the surviving family member. They were unselfish enough to consider the impact on those who are left behind. They were responsible enough to maintain their autonomy and their dignity right up to the moment of their deaths. And I will never, ever forget that last, final gift they gave me: the gift of doing the most loving thing one can do for their surviving family.

dreama · 09-29-2009, 07:56 PM

Quote:

Originally Posted by jillio

I am grateful, indeed, that both of my parents and my brother were so caring and so loving as to have an advance directive in place.

Yes, I'm sure you are.

But it doesn't change anything that I've said.

jillio · 09-30-2009, 05:48 PM

Quote:

Originally Posted by dreama

Yes, I'm sure you are.

But it doesn't change anything that I've said.

It doesn't change anything you've said, but it certainly adds a real life example and application to your hypothetical statements.

dreama · 09-30-2009, 09:34 PM

Quote:

Originally Posted by jillio

It doesn't change anything you've said, but it certainly adds a real life example and application to your hypothetical statements.

Sure you give a real life example.

However, unless you provided them with a sip and puff computer which they learnt how to operate before hand or they were vocal until the last you really wouldn't know if they HAD changed their mind at the end.

I'm refering to people who lose the power of speech and movement WITHOUT losing the will of life, but because they directed their family members to kill them when they were able they are stick with their family members following their directories.

It seems wrong to me to die simply because of some short sightedness like this.

CJB · 09-30-2009, 10:56 PM

Quote:

Originally Posted by dreama

Sure you give a real life example.

However, unless you provided them with a sip and puff computer which they learnt how to operate before hand or they were vocal until the last you really wouldn't know if they HAD changed their mind at the end.

I'm refering to people who lose the power of speech and movement WITHOUT losing the will of life, but because they directed their family members to kill them when they were able they are stick with their family members following their directories.

It seems wrong to me to die simply because of some short sightedness like this.

Couldn't you also say the reverse, dreama? Perhaps there wish was to be on life support no matter what but their wishes have changed and they have no way of communicating. It goes both ways.

I think it would be just as wrong to keep someone on life support when they had a change in will and wanted to let nature take its course.

Lighthouse77 · 10-01-2009, 01:30 AM

I wish we have easy access to all kinds of accommodations, then our life would be as enjoyable as people who don't have any sort of disabilities, Then maybe people (including ourselves) won't see us as an burden to the society.

souggy · 10-01-2009, 03:05 AM

Quote:

Originally Posted by Lighthouse77

I wish we have easy access to all kinds of accommodations, then our life would be as enjoyable as people who don't have any sort of disabilities, Then maybe people (including ourselves) won't see us as an burden to the society.

Islay.

jillio · 10-01-2009, 07:39 PM

Quote:

Originally Posted by dreama

Sure you give a real life example.

However, unless you provided them with a sip and puff computer which they learnt how to operate before hand or they were vocal until the last you really wouldn't know if they HAD changed their mind at the end.

I'm refering to people who lose the power of speech and movement WITHOUT losing the will of life, but because they directed their family members to kill them when they were able they are stick with their family members following their directories.

It seems wrong to me to die simply because of some short sightedness like this.

Read again, dreama. They all lapsed into a coma, and prior to becoming comatose, they were perfectly able to communicate verbally. They confirmed their decision prior to becoming comatose. A comatose person cannot communicate, no matter what adaptations or accommodations you provide. That is why it is important to have an advanced directive in place before an illness renders you comatose.

Lighthouse77 · 10-02-2009, 01:19 PM

you have to be careful what is define as comatose. sometimes doctors put patients in a coma because of severe pain.

My aunt was in a coma for a long time after her car accident. She also have a tube breathing for her as well (you know the tube that goes in your neck to help you breath). She was also paralyze on her right side because she was hit on her left brain. I can't remember the exact detail because I was only 13 or 14 when all this happened. We spent many summer days and nights at the hospital being there for her. Anyway, She is still alive today, Walking and working. She still have some damage from the accident but she turned out great.

09-26-2009, 09:52 PM	#5 (permalink)
Lighthouse77 Registered User Join Date: Mar 2009 Posts: 1,309	My mother had DNR as well. Some of the family objected it. But I told the doctor just make her dying as painless as possible. __________________ Good thing about standards is that there are so many of them to choose from.

09-27-2009, 05:23 PM	#9 (permalink)
dreama deafblind vegan Join Date: Apr 2007 Location: England Posts: 3,018	You never know until it happens. My mom once told me that she didn't want to be a burden on us so would rather we knocked her off if anything happened to her. When something did happen, it was a differant story. My dad told me that she was clinging to her last week of life. Even though she had cancer and was in a lot of pain. It's one of the reasons father and I are BOTH against legalising Euthanasia. People change their minds you know. __________________ I speak for those who cannot speak for themselves. http://www.fightfoca.com/

09-28-2009, 12:24 AM	#13 (permalink)
dreama deafblind vegan Join Date: Apr 2007 Location: England Posts: 3,018	Not neccessarily. I have problems communicating with people who don't do deafblind manual. Doesn't mean I'm thick. A person could have become paralised without speech but still be able to think, only the relatives don't know how to get through. __________________ I speak for those who cannot speak for themselves. http://www.fightfoca.com/

09-28-2009, 03:01 PM	#16 (permalink)
dreama deafblind vegan Join Date: Apr 2007 Location: England Posts: 3,018	Jilli: There are devices available to help people communicate but they are not always made readily available. Hence I've been off the phone since I was unable to use a large print Minicom. I'd have been off the computer too if I hadn't bought myself a braille display. So your assumsion that the disabled automatically get whatever is needed is totally irodious. And no it is no differant for the terminally ill. When mother went home for easter she needed a ventilator. The hospital did not automatically provide gas for her. My dad had to go round to all the chemists to find some. She died shortly after running out of gas in the early hours of the morning. Dad tried to ring an ambulance for her but it was too late by then. If such a simple thing as a braille computer or gas for a ventilator isn't automatically be provided for, do you seriously expect a special communication system with head set or puff system would be? You've got to remember that not all of their relatives will know of the existance of such items. Even if they do they might not know where to get them from. They might not even bother if they've already got their relatives request not to keep them going. I mean why pay several thousand dollars to 'hear' their relatives updated request when they've already decided to kill them? __________________ I speak for those who cannot speak for themselves. http://www.fightfoca.com/

09-28-2009, 09:07 PM	#18 (permalink)
dreama deafblind vegan Join Date: Apr 2007 Location: England Posts: 3,018	If you don't drink, smoke, go for meals out, use taxi's, and stick to cheap food, you would be surprised how much you can save up. Reading and walking are free. computer expenses aren't that pricy either unless you need braille. Zoom just costs 300 pounds. Besides I'm used to a saving for expensive items. I was brought up poor, and now I have more money then I ever had growing up. The braille Focus cost me 3 thousand pounds. __________________ I speak for those who cannot speak for themselves. http://www.fightfoca.com/

Today
Deafness	Sponsored Links __________________ This advertising will not be shown in this way to registered members. Register your free account today and become a member on AllDeaf.com

09-26-2009, 06:38 PM	#2 (permalink)
jillio Registered User Join Date: Jun 2006 Posts: 32,396	Isn't it wonderful that this person has a choice regarding their end of life directives? But for that choice to be available, others that make different choices must be allowed to choose what they will. You cannot retain your choice without allowing others to make their choices as well.

09-27-2009, 01:59 AM	#6 (permalink)
LDNanna Everything purple is mine Join Date: Feb 2009 Posts: 887	Yes, its best to have your own choice. For me, the polar opposite. It is on file with md, hospital, all kids and spouse know and my lawyer - who is a very stern fella. Wish it was on our drivers license with my donor info. I dont want that type decision on my kin. They should never wonder if they made the right choice. Ive seen too many folks beg for death as a release from chronic, incurable and severe pain. I never want that, nor to be warehoused in an elder care center. In my former life I did some hospital, nursing home and hospice work. Pass the morphine, please!

09-27-2009, 02:29 AM	#7 (permalink)
CJB deafblind writer Join Date: Aug 2009 Location: U.S. Posts: 1,425	I'm one of those people that would want to be euthanized and would elect DNR given the circumstances.

10-01-2009, 01:30 AM	#27 (permalink)
Lighthouse77 Registered User Join Date: Mar 2009 Posts: 1,309	I wish we have easy access to all kinds of accommodations, then our life would be as enjoyable as people who don't have any sort of disabilities, Then maybe people (including ourselves) won't see us as an burden to the society. __________________ Good thing about standards is that there are so many of them to choose from.

10-02-2009, 01:19 PM	#30 (permalink)
Lighthouse77 Registered User Join Date: Mar 2009 Posts: 1,309	you have to be careful what is define as comatose. sometimes doctors put patients in a coma because of severe pain. My aunt was in a coma for a long time after her car accident. She also have a tube breathing for her as well (you know the tube that goes in your neck to help you breath). She was also paralyze on her right side because she was hit on her left brain. I can't remember the exact detail because I was only 13 or 14 when all this happened. We spent many summer days and nights at the hospital being there for her. Anyway, She is still alive today, Walking and working. She still have some damage from the accident but she turned out great. __________________ Good thing about standards is that there are so many of them to choose from.

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