Respecting someone's Wishes

[Julia]

This thread has been prompted by reading about suggestions a couple of days ago about perhaps challenging a Will.

If it's known that the deceased was not cognitively challenged and entirely able to make up his/her mind about the bequeathing of any assets, I wonder why others should assume any right to question this?

A similar situation arose when my mother was dying. She had a diabetic ulcer which became gangrenous and the only way her life would be saved would have been an amputation of the lower leg. She was adamant she did not want this, was content with her life, and absolutely sure about her preference for death. She had even put this in writing via an Advance Health Directive.
However, when I arrived back in NZ I was advised by the consultant treating her that, if I wished, I could override her decision. Why? She was of totally sound mind and knew what she wanted and I wouldn't even consider not respecting her wishes.

Similarly, we see the same phenomenon re organ donation when someone is dying. Families for some peculiar reason sometimes go against the declared wish of the dying person and refuse permission for organ harvest which could save multiple other lives.

How do others feel?

 

[pixel]

Unless the dying wish violates a Law - e.g. "I leave my gun collection to my friend, the drug dealer", or "my son, who needs dialysis, can have my kidney, provided he leaves his wife" - I cannot find any reason why it should be even permitted to challenge any Will that was made and documented by a competent person.

I would go even one step further and compel medical practitioners to abide by instructions that a patient made and documented while still compos mentis. And that should include refusal of life-prolonging procedures as well as assistance with suffering-ending ones.

 

[Zedd]

Goes down to the paradox of personal choice vs holding someone's life to be invaluable and irreplaceable. Same reason why legalizing euthanasia is such a difficult debate.

I imagine it's difficult for a doctor to see someone willing to let go, no matter how sane/peaceful/content they seem, if there's another option. Especially if they've seen others live through said option and go on to live longer, happy lives.

 

[MrBurns]

In the matter of a will money rules, if your parent leaves the lot to a church and you are destitute you will challenge the will.

They always leave the final decision re organ donation to the family.

 

[McLovin]

In the matter of a will money rules, if your parent leaves the lot to a church and you are destitute you will challenge the will.

There's actually laws around what you have to leave those who can claim they are entitled to benefit from your estate. For instance, all things being equal, you can't leave one child $1m and the other child a ham sandwich, even if he/she hasn't spoken to you in 20 years.

Not offering an opinion as to whether that is right or wrong.

 

[lindsayf]

If I was the appointed advocate I would do all in my power to respect the persons wishes. The advanced care directive process is not a legal binding process persay. The best chance of having the persons wishes respected is via an advocate who is right there and who knows what they want. In a case like your mothers it is no surprise there were efforts to get a medical intervention happening. The role of the advocate in many cases is to stop invasive procedures when they are clearly not wanted...but still they come ( often).

The advance care planning process is good in that it educates person and family about how to get wishes articulated and respected...if that is important for your family then it is good to do.

 

[Julia]

I would go even one step further and compel medical practitioners to abide by instructions that a patient made and documented while still compos mentis. And that should include refusal of life-prolonging procedures as well as assistance with suffering-ending ones.

Pixel, thanks for your comments. At least in Queensland, the Advance Health Directive is a legally binding document, at least in the situation where there exists a terminal condition.

Goes down to the paradox of personal choice vs holding someone's life to be invaluable and irreplaceable. Same reason why legalizing euthanasia is such a difficult debate.

I imagine it's difficult for a doctor to see someone willing to let go, no matter how sane/peaceful/content they seem, if there's another option. Especially if they've seen others live through said option and go on to live longer, happy lives.

Why should any doctor have the right to play God and dictate to any other person against their rationally described wishes?
What is workable for one person will not be for someone else. Surely it's the individual's right to choose?

If I am rendered quadriplegic at an advanced age, why should anyone be able to tell me I am obliged to endure such misery if I prefer to die?

If I was the appointed advocate I would do all in my power to respect the persons wishes. The advanced care directive process is not a legal binding process persay.

Lindsay, as above. It is legally binding in Queensland. I don't know about other States.

The best chance of having the persons wishes respected is via an advocate who is right there and who knows what they want.

How can any other person know better than the person himself/herself what is best for that person?
It could be that a daughter or son had a longstanding grievance against a parent and relished the opportunity to make that parent suffer. Such a situation is much more common than you might imagine.

In a case like your mothers it is no surprise there were efforts to get a medical intervention happening. The role of the advocate in many cases is to stop invasive procedures when they are clearly not wanted...but still they come ( often).

Can you express this differently? I don't actually understand what you're saying here.
I don't see the role of any advocate as other than supporting the wishes of the person whom they are representing.

The advance care planning process is good in that it educates person and family about how to get wishes articulated and respected...if that is important for your family then it is good to do.

Thank you. That at least makes sense.

 

[pixel]

The only role an "advocate" should have is to enact, even enforce, the expressed (and implied, where possible) wishes of the client. Unfortunately, too many well-meaning meddlers try to impose their personal views on other people's lives.

In a recent letter, I read this point expressed along these lines:
"You were not involved in my coming into existence. You didn't care how I lived, nor did you lend support when I may have needed someone. You didn't even know I existed. I lived my life without you, took care of my own affairs, and have now decided it's time to end my existence. What gives you the right now, to interfere in my private affairs and demand I do your bidding?"

To which I could add nothing more.

 

[Zedd]

Why should any doctor have the right to play God and dictate to any other person against their rationally described wishes?
What is workable for one person will not be for someone else. Surely it's the individual's right to choose?

If I am rendered quadriplegic at an advanced age, why should anyone be able to tell me I am obliged to endure such misery if I prefer to die?

Didn't mean to offend. Sorry if I have.

I think the turning point of any of these arguments is rationality. It's subjective yet critical to the nature of the debate.

Is it rational for a patient to refuse life saving treatment because they're not willing to lose a limb, lose reproductive ability, give up a lifestyle, etc? Alternatively is it rational to insist on surgery against medical advise just to regain a lifestyle?

And given the unknowns, the fear, the pain, it's not hard to imagine a doctor questioning a patients rationality in life-and-death decisions and given they have a legal option of having someone else make an objective decision that they use that option sometimes.

I've never been in a situation where a loved-one has had to make such life-changing/ending decisions, but I for one would use any legal avenue I had to overturn their decision if I believed, after knowing them for so long, that although they appeared rational, that they were not.

 

[Julia]

Didn't mean to offend. Sorry if I have.

Not at all. Your contribution is appreciated.

I think the turning point of any of these arguments is rationality.

Of course. That goes without saying, and emphasises the importance of having an Advance Health Directive which is a legally binding document when properly completed with the participation of the patient's doctor.

Is it rational for a patient to refuse life saving treatment because they're not willing to lose a limb, lose reproductive ability, give up a lifestyle, etc?

If that's how they feel, then yes, why would it not be? Only the individual himself/herself can know what is tolerable to them.
It would be less black and white, perhaps, for a 25 year old, but when someone is almost 80, has various other comorbidities, has had a satisfying life of achievement and contribution to the community, I cannot see how it could be in anyone's interests to act against their clearly stated wishes.

I don't wish to be intrusive, Zedd, and don't answer the question if you don't want to, but are you perhaps guided by some either religious or other 'right to life at all costs' philosophy?

And given the unknowns, the fear, the pain, it's not hard to imagine a doctor questioning a patients rationality in life-and-death decisions

What fear and pain? If there is a clear choice between two options - living in a state felt to be intolerable to the individual concerned, or accepting death after a life well lived, what is so unknown?

Especially as with an elderly person even just the anaesthetic risk could result in cognitive impairment, not to mention the potential infection and protracted healing process of having half your leg chopped off, then spending the remainder of your days in a wheelchair.

and given they have a legal option of having someone else make an objective decision that they use that option sometimes.

They do not have a legal option in Qld if an Advance Health Directive has been properly completed and witnessed. Neither should they.

I've never been in a situation where a loved-one has had to make such life-changing/ending decisions, but I for one would use any legal avenue I had to overturn their decision if I believed, after knowing them for so long, that although they appeared rational, that they were not.

If you consider you truly have such a right, I would strongly suggest you have the discussion with any family members to learn what their feelings are about the subject, and having done so, respect their decision.
At the same time, presuming you're younger than they are, maybe consider committing your own wishes to writing also. None of us know when a life changing event can occur.

 

[lindsayf]

Pixel, thanks for your comments. At least in Queensland, the Advance Health Directive is a legally binding document, at least in the situation where there exists a terminal condition.


Why should any doctor have the right to play God and dictate to any other person against their rationally described wishes?
What is workable for one person will not be for someone else. Surely it's the individual's right to choose?

If I am rendered quadriplegic at an advanced age, why should anyone be able to tell me I am obliged to endure such misery if I prefer to die?



Lindsay, as above. It is legally binding in Queensland. I don't know about other States.

How can any other person know better than the person himself/herself what is best for that person?
It could be that a daughter or son had a longstanding grievance against a parent and relished the opportunity to make that parent suffer. Such a situation is much more common than you might imagine.


Can you express this differently? I don't actually understand what you're saying here.
I don't see the role of any advocate as other than supporting the wishes of the person whom they are representing.


Thank you. That at least makes sense.

Hi Julia
I obviously didnt express myself well. I suspect we fully agree.
The advocate is the person appointed under the advance care directive to advocate for the person if and when they no longer can do so for themselves( which is the whole point of the ACD process of course). That person is hopefully carefully selected so that they CAN be an effective advocate and will hopefully not be subject to family conflicts etc that you rightly say are quite common. The real value in the ACD is that all preferences are put on the table well before the person loses the capacity to state their wishes. In some ACD forms you can also exclude certain parties from being involved or even present..ie family members who are not trusted/who may not have persons best interests at heart, who are estranged etc. This offers the potential to avoid a lot of conflict and confusion.

It isnt rare for invasive procedures to be suggested by doctors in the context of palliative care ( and even despite the existence of an ACD..at least in Vic/NSW) and this is a specific situation where the appointed advocate will be able to demand that the persons wishes are respected and refer the doctors to proof of the persons wishes etc.

Hopefully I am being clear?

regards

Lindsay

 

[Zedd]

If that's how they feel, then yes, why would it not be? Only the individual himself/herself can know what is tolerable to them.

I would argue that in some circumstances the individual does not know when a future situation will be tolerable to them. How can someone possible know that living in a wheelchair, or having to wear a prosthesis, or wear a colonoscopy bag, or take a handful of drugs each day for the remainder of their life, or never being able to conceive, is intolerable?

I'm not suggesting they should have to try it to know for sure, but I don't think people's perception of some of these "disabilities" are accurate, even when given all the available information.

I don't wish to be intrusive, Zedd, and don't answer the question if you don't want to, but are you perhaps guided by some either religious or other 'right to life at all costs' philosophy?

Not at all. In fact I'm a firm believer in euthanasia and the patient's ultimate right to choose.
I suppose the reason for my first post was because you appeared to be insulted that the consultant presented you with a choice. I was merely trying to present an alternative view. I count a number of doctors as close family and friends I know that none of them would suggest a course of action against what they firmly believed to be in the best interest of the patients, and yes, they too believe quality is far superior than quantity of life.

I don't just think, but know from experience that I do know what's best for loved-ones in some circumstances, even if they can't see it for themselves at the time. I also know that others have been in similar situations for myself. But, I also hate the idea of not being able to decide for myself, even if it means letting me make my own mistakes...

I suppose I was just trying to grey the debate. It's certainly a tough issue.

 

[Julia]

Hi Julia
I obviously didnt express myself well. I suspect we fully agree.

Hello lindsayf. Sorry if I've misunderstood what you were saying.

The advocate is the person appointed under the advance care directive to advocate for the person if and when they no longer can do so for themselves( which is the whole point of the ACD process of course). That person is hopefully carefully selected so that they CAN be an effective advocate and will hopefully not be subject to family conflicts etc that you rightly say are quite common.

I think you are confusing an Advance Health Directive with an Enduring Power of Attorney. They are quite separate documents and fulfil different, if complementary functions.

With an Advance Health Directive, you do not appoint anyone to speak for you if you are unable to do so.
The document itself serves this purpose. It is completed in conjunction with your doctor and clearly spells out what life saving measures you do or do not want to be taken, should you be unable to speak for yourself.
As I've said before, it is a legally binding document in Queensland.
It is many pages in length and deals with each potential life saving measure individually, eg do you want artificial respiration, do you want artificial feeding/hydration/antibiotics. There is absolutely no room for doubt on the part of any medical practitioner reading the document. It also gives additional space for extra comments which the patient feels are not adequately covered in the formal document.

The patient completes his/her section of the AHD, then takes it for consultation with his/her GP. The GP checks each section, questioning the patient in detail, and finally - being assured of the patient's clarity of mind in completing the document - co-signs it, attesting to the patient's ability to make a proper decision.

End of story.

An Enduring Power of Attorney is a document giving permission to any chosen person or persons to make decisions on your behalf should you be unable to do so. This can encompass health decisions (in which case you would make clear that an AHD exists and that your attorney(s) have a copy of that document, plus financial, and real estate decisions, essentially any life decision you would make for yourself were you able.

Obviously, your attorney(s) will be people with whom you have clearly discussed all your wishes and whom you feel assured will be competent to act as your advocates should the (hopefully unlikely) need ever arise.

Your general practitioner and your local hospital should ideally hold copies of both these documents on their files, and of course the attorneys should hold both documents also.

Hope that clarifies the value of both quite separate documents which complement each other.

I think in some states the Qld AHD is known as a Living Will.
Your State Attorney-General's department will have a document which can be downloaded and completed.

It isnt rare for invasive procedures to be suggested by doctors in the context of palliative care ( and even despite the existence of an ACD..at least in Vic/NSW)

Yes, I know this happens, though not usually in the context of palliative care: rather where the patient is admitted to intensive care where their default mode is to use every possible method of prolonging life, often entirely contrary to the wishes of the patient.

and this is a specific situation where the appointed advocate will be able to demand that the persons wishes are respected and refer the doctors to proof of the persons wishes etc.

Correct. And thus we can see the value of the person holding the position of Enduring Power of Attorney also having the AHD as proof of the patient's wishes.

I would argue that in some circumstances the individual does not know when a future situation will be tolerable to them. How can someone possible know that living in a wheelchair, or having to wear a prosthesis, or wear a colonoscopy bag, or take a handful of drugs each day for the remainder of their life, or never being able to conceive, is intolerable?

Perfectly easily, Zedd. It ain't hard to imagine being in such a position and understanding with absolute clarity how one would feel about it.
I don't know how old you are? It's perhaps something which becomes very clear as one gets older, sees more of life, and has more personal insight than is possible at a young age.

I'm not suggesting they should have to try it to know for sure,

Well, sorry, but you are, really. If you are going to want to override a perfectly sane person's decision about what they want because you think you know better, then you are in fact condemning them to something they have specifically said they do not want. I have no idea why you think that you should have such a right.

but I don't think people's perception of some of these "disabilities" are accurate, even when given all the available information.

Why on earth not?

Not at all. In fact I'm a firm believer in euthanasia and the patient's ultimate right to choose.

Well, in this discussion you are completely contradicting yourself if that's the case. See above.

I suppose the reason for my first post was because you appeared to be insulted that the consultant presented you with a choice.

No, of course I wasn't insulted. Offering me a choice about my mother's wishes is in no way insulting to me: quite the opposite.
But I was astonished that such a situation could exist.
To be fair to that consultant, he seemed to be just 'going through the motions' , as though he was fulfilling some legal obligation by telling me that, and he in no way suggested that he thought my mother's choice was not entirely valid. On the contrary, he went on to say that she clearly was in full possession of her cognitive abilities and he was entirely prepared to support her decision and ensure her death was as comfortable as possible. It turned out to be absolutely so.

I didn't raise the question in terms of my personal situation, but rather to try to increase discussion about a subject most people seem reluctant to have. Imo we need to acknowledge the reality of death and the dying process, discuss it with our families, instead of leaving it all unsaid, a situation which leads to the current undesirable last minute conversation medical personnel would much rather not have.

I don't just think, but know from experience that I do know what's best for loved-ones in some circumstances, even if they can't see it for themselves at the time. I also know that others have been in similar situations for myself. But, I also hate the idea of not being able to decide for myself, even if it means letting me make my own mistakes...

So, really you are not sure where you stand on this. That probably makes you typical of most of the population.
That's why more of us need to have the discussion imo.

I suppose I was just trying to grey the debate. It's certainly a tough issue.

And I truly thank you for your contribution which I recognise as being sincere, if ambivalent.

 

[Zedd]

Perfectly easily, Zedd. It ain't hard to imagine being in such a position and understanding with absolute clarity how one would feel about it.
I don't know how old you are? It's perhaps something which becomes very clear as one gets older, sees more of life, and has more personal insight than is possible at a young age.

I'm 28, but my age is irrelevant in this, it's a question of life experiences and I've had my fair share.

I had a whole page of examples and arguments but realised it was summarised well with this:
I'm colour-blind. Not completely, more in the sense that I see in 16-bit colour while the norm is 32-bit true colour. Can you imagine what that's like? Maybe. Understand it with absolute clarity?

It can be difficult sometimes to live with even such a minor "disability", but usually in ways people don't imagine, while other issues people think would be life-altering just aren't. The more time you spend with people who have disabilities, the more you come to understand what are and are not the real restrictions. In the same manner, doctors who spend their entire careers treating people's ailments will usually have a far better understanding (although still incomplete) of what life is like after some surgeries or treatments.

Ideally, everyone would understand this, and really, truly, take this into account when making their own personal decision. I don't think many people do appreciate this. Your statement above suggests you yourself do not comprehend your own lack of comprehension. If an individual fails to understand the reality of their situation then their ability for rational thought and self-determination is compromised no? Isn't that about when we take someone's legal rights away?

 

[Julia]

I'm 28, but my age is irrelevant in this, it's a question of life experiences and I've had my fair share.

I promise you those life experiences will be hugely more in another couple of decades.

I had a whole page of examples and arguments but realised it was summarised well with this:
I'm colour-blind. Not completely, more in the sense that I see in 16-bit colour while the norm is 32-bit true colour. Can you imagine what that's like? Maybe. Understand it with absolute clarity?

It can be difficult sometimes to live with even such a minor "disability", but usually in ways people don't imagine, while other issues people think would be life-altering just aren't. The more time you spend with people who have disabilities, the more you come to understand what are and are not the real restrictions. In the same manner, doctors who spend their entire careers treating people's ailments will usually have a far better understanding (although still incomplete) of what life is like after some surgeries or treatments.

Ideally, everyone would understand this, and really, truly, take this into account when making their own personal decision. I don't think many people do appreciate this. Your statement above suggests you yourself do not comprehend your own lack of comprehension. If an individual fails to understand the reality of their situation then their ability for rational thought and self-determination is compromised no? Isn't that about when we take someone's legal rights away?

Now you are being a bit silly, rather rude even.
To compare the situation of an otherwise healthy young person who has a minor colour disability with that of an 80 year old with multiple comorbidities makes no sense.
Best we leave it there. The topic is worth civil and rational discussion, imo, not suggestions of irrationality because you disagree.

 

[johenmo]

Julia & Zedd - my mother is 82, in care with Alzheimer's & has noooooooo idea of who we are. As an educator she said years ago that one of her fears was losing her faculties & she'd rather be dead than like a zombie. Unfortunately she is in good health & looks to be set to continue like this for some time. She put nothing in place to stop treatment etc.

I understand your POV Julia & as I have several medical conditions (comorbidities) later life will be more "frustrating" for me - so I think I understand her POV.

My mother's condition has led me to think deeply on this topic - if someone can't make a decision themselves then how often are they "kept alive" so the relatives don't have to suffer the loss? My brother is in the same state of Australia as her & has done all the looking after... & he & his wife have agreed to take the other one overseas to Switzerland or wherever should the same situation arise. Like Dr John Elliot did in 2007.

If we can't respect the wishes (made with sufficient (mental) acuity) of someone in their hour of need then shame on us & our society.

 

[Julia]

Julia & Zedd - my mother is 82, in care with Alzheimer's & has noooooooo idea of who we are. As an educator she said years ago that one of her fears was losing her faculties & she'd rather be dead than like a zombie. Unfortunately she is in good health & looks to be set to continue like this for some time. She put nothing in place to stop treatment etc.

I'm very sorry to hear that, johenmo. A friend's mother was in a similar situation: completely demented for many years, no recognition of family etc. My friend frequently lamented that she was still here, but then completely contradicted herself every time mother had an infection, and insisted an ambulance be called, mother taken to hospital for every conceivable life saving measure. Meantime, she and her sister spent hours at the nursing home each day virtually forcing food down the mother's throat and even trying to persuade the GP and the nursing home staff that mother should have a feeding tube inserted to counter her refusal to eat.
Just bizarre.

Eventually, the GP just called a halt to the whole farcical performance and said "no more hospital, it's more than time to allow things to take their course". The mother died a few months later.

My mother's condition has led me to think deeply on this topic - if someone can't make a decision themselves then how often are they "kept alive" so the relatives don't have to suffer the loss?

Yes, you're right, as the anecdote above. So selfish, cruel really.

My brother is in the same state of Australia as her & has done all the looking after... & he & his wife have agreed to take the other one overseas to Switzerland or wherever should the same situation arise. Like Dr John Elliot did in 2007.

Hopefully at some stage Australia will become similarly enlightened

If we can't respect the wishes (made with sufficient (mental) acuity) of someone in their hour of need then shame on us & our society.

Agree absolutely.

 

[Zedd]

To compare the situation of an otherwise healthy young person who has a minor colour disability with that of an 80 year old with multiple comorbidities makes no sense.

I'm well aware of how trivial it may seem and that was intentional because if you can't appreciate how different life is due to being colour-blind what makes you think you can, using your words, understand with "absolute clarity" what life is like being without the use of your legs? Or any of the other examples I used? And in the same way that you're suggesting that with another couples decades I may see things differently, I'm saying that an individual making a decision as to whether to risk or choose death, over a life they can't really appreciate, may not be in the best position to make that decision. Especially if common misconceptions are clouding their otherwise sound and rational judgment.

 

[DB008]

There's actually laws around what you have to leave those who can claim they are entitled to benefit from your estate. For instance, all things being equal, you can't leave one child $1m and the other child a ham sandwich, even if he/she hasn't spoken to you in 20 years.

Not offering an opinion as to whether that is right or wrong.

1) I personally think that this is wrong.

2) Does the Government automatically get a deceased estate is someone passes away without a will (and without a partner, ie; just kids left behind)

 

[Julia]

1) I personally think that this is wrong.

This is where careful wording of the Will is necessary. If the Will includes clearly described reasons why potential challengers should not receive a benefit, that will make a successful challenge much more difficult.

2) Does the Government automatically get a deceased estate is someone passes away without a will (and without a partner, ie; just kids left behind)

No. AFAIK the estate is distributed amongst any children, if no children, then siblings and/or other relatives like cousins. If no such people exist, then I don't know: probably then goes to the State.
McLovin, you seem well informed about this stuff?

The other thing you might not like, DB008, is that if someone challenges a Will their legal costs will usually come out of the Estate. Anecdotally I've heard of situations where most of the Estate has been eroded by the costs of all the legal wrangling.