Power of Attorney - Help with Instructions re End of Life Decisions Please

SKA123

Hubby & I are completing PoA's for both Health & Finance. We are concerned about making sure the Preferences & Instructions to Attorneys relating to End of Life (EoL) is unambiguous and I would appreciate any suggestions please.

We both feel strongly about wanting all medical interventions possible to live ie we do not want any interventions or withdrawal of care which would end life prematurely / hasten death, even if life is to be in a vegetative state, painful or whatever.

Some of our context is that we don't trust the NHS in this regard. Whilst my hubby & I both 100% trust each other to fulfil each others wishes, we have had to deal with the NHS in EoL situations and each time the NHS pressurised both Donor & Attorney to 'hasten' EoL, despite a PoA and the Donors clear wishes being pro-life (including Donors' spoken confirmation to the NHS staff).

All the examples I have found for the Preference & Instruction sections seem to focus on withdrawal of care ie to end life early, whereas we want to emphasise the opposite plus ensure that what is written is unambiguous and that both Finance & Health LPA's 'dovetail' with each other. We have yet to decide on a replacement Attorney, so need to get the wording right for them too should they be required.

Here is what we have so far in the Finance LPAs -
Preferences :
- (can't think of anything to put here)

Instructions :
- I consent to the disclosure to my attorney of all information concerning me
- My attorney can make all decisions about my share of all assets held in our joint names
- My attorney can make all decisions about all investments held solely in my name
- My attorney can decide that I am to move into residential care if I can no longer live independently AND I can no longer be cared for at home and can dispose of any assets held in my name to enable this

And this is what we have so far in the Health LPAs -
Preferences :

- I would want all treatments necessary that could prolong my life even if the remainder of my life is for example to be in a vegetative state or terminally in pain

- I would prefer not to move into residential care and I would like to be cared for at home

- I would prefer to die at home

Instructions :

- I consent to the disclosure to my attorney of all information concerning me

- My attorney must inform doctors and other medical personnel of my advance decision that for religious reasons I want all treatments that could prolong my life 

- My attorney can decide that I am to move into residential care if I can no longer live independently AND I can no longer be cared for at home

- For religious reasons, my attorney must not consent to life-sustaining treatment being withdrawn even if for example I am in a persistent vegetative state or terminally in pain

Thank you so much for sticking with it if you got this far down the page.
xx

BikingBud

SKA123 said:

Hubby & I are completing PoA's for both Health & Finance. We are concerned about making sure the Preferences & Instructions to Attorneys relating to End of Life (EoL) is unambiguous and I would appreciate any suggestions please.

We both feel strongly about wanting all medical interventions possible to live ie we do not want any interventions or withdrawal of care which would end life prematurely / hasten death, even if life is to be in a vegetative state, painful or whatever.

Some of our context is that we don't trust the NHS in this regard. Whilst my hubby & I both 100% trust each other to fulfil each others wishes, we have had to deal with the NHS in EoL situations and each time the NHS pressurised both Donor & Attorney to 'hasten' EoL, despite a PoA and the Donors clear wishes being pro-life (including Donors' spoken confirmation to the NHS staff).

All the examples I have found for the Preference & Instruction sections seem to focus on withdrawal of care ie to end life early, whereas we want to emphasise the opposite plus ensure that what is written is unambiguous and that both Finance & Health LPA's 'dovetail' with each other. We have yet to decide on a replacement Attorney, so need to get the wording right for them too should they be required.

Here is what we have so far in the Finance LPAs -
Preferences :
- (can't think of anything to put here)

Instructions :
- I consent to the disclosure to my attorney of all information concerning me
- My attorney can make all decisions about my share of all assets held in our joint names
- My attorney can make all decisions about all investments held solely in my name
- My attorney can decide that I am to move into residential care if I can no longer live independently AND I can no longer be cared for at home and can dispose of any assets held in my name to enable this

And this is what we have so far in the Health LPAs -
Preferences :

- I would want all treatments necessary that could prolong my life even if the remainder of my life is for example to be in a vegetative state or terminally in pain

- I would prefer not to move into residential care and I would like to be cared for at home

- I would prefer to die at home

Instructions :

- I consent to the disclosure to my attorney of all information concerning me

- My attorney must inform doctors and other medical personnel of my advance decision that for religious reasons I want all treatments that could prolong my life 

- My attorney can decide that I am to move into residential care if I can no longer live independently AND I can no longer be cared for at home

- For religious reasons, my attorney must not consent to life-sustaining treatment being withdrawn even if for example I am in a persistent vegetative state or terminally in pain

Thank you so much for sticking with it if you got this far down the page.
xx

I find that all quite interesting not least, some of the phrases used could suck up vast sums of money in legal discussion.

I will only ask, I trust all your family share this belief?

I feel that if I add any further comment it is likely to get closed very quickly.

RAS

I'd anticipate this leading to legal action in the courts to determine best interests in some instances.

I'd have to add that my own decisions would be diametrically different.

Sea_Shell

BikingBud said:

SKA123 said:

Hubby & I are completing PoA's for both Health & Finance. We are concerned about making sure the Preferences & Instructions to Attorneys relating to End of Life (EoL) is unambiguous and I would appreciate any suggestions please.

We both feel strongly about wanting all medical interventions possible to live ie we do not want any interventions or withdrawal of care which would end life prematurely / hasten death, even if life is to be in a vegetative state, painful or whatever.

Some of our context is that we don't trust the NHS in this regard. Whilst my hubby & I both 100% trust each other to fulfil each others wishes, we have had to deal with the NHS in EoL situations and each time the NHS pressurised both Donor & Attorney to 'hasten' EoL, despite a PoA and the Donors clear wishes being pro-life (including Donors' spoken confirmation to the NHS staff).

All the examples I have found for the Preference & Instruction sections seem to focus on withdrawal of care ie to end life early, whereas we want to emphasise the opposite plus ensure that what is written is unambiguous and that both Finance & Health LPA's 'dovetail' with each other. We have yet to decide on a replacement Attorney, so need to get the wording right for them too should they be required.

Here is what we have so far in the Finance LPAs -
Preferences :
- (can't think of anything to put here)

Instructions :
- I consent to the disclosure to my attorney of all information concerning me
- My attorney can make all decisions about my share of all assets held in our joint names
- My attorney can make all decisions about all investments held solely in my name
- My attorney can decide that I am to move into residential care if I can no longer live independently AND I can no longer be cared for at home and can dispose of any assets held in my name to enable this

And this is what we have so far in the Health LPAs -
Preferences :

- I would want all treatments necessary that could prolong my life even if the remainder of my life is for example to be in a vegetative state or terminally in pain

- I would prefer not to move into residential care and I would like to be cared for at home

- I would prefer to die at home

Instructions :

- I consent to the disclosure to my attorney of all information concerning me

- My attorney must inform doctors and other medical personnel of my advance decision that for religious reasons I want all treatments that could prolong my life 

- My attorney can decide that I am to move into residential care if I can no longer live independently AND I can no longer be cared for at home

- For religious reasons, my attorney must not consent to life-sustaining treatment being withdrawn even if for example I am in a persistent vegetative state or terminally in pain

Thank you so much for sticking with it if you got this far down the page.
xx

I find that all quite interesting not least, some of the phrases used could suck up vast sums of money in legal discussion.

I will only ask, I trust all your family share this belief?

I feel that if I add any further comment it is likely to get closed very quickly.

I hope they share their belief, as if not, they might not agree to sign.  I'm not sure I could.

I'd hate to imagine the emotional strain that could place on family.

"best interests " Vs "You must do xyz"

I'd also suspect that it could be subject to legal challenge 😞

There are usually no winners when lawyers get involved, other than lawyers.

SKA123

BikingBud said:

SKA123 said:

Hubby & I are completing PoA's for both Health & Finance. We are concerned about making sure the Preferences & Instructions to Attorneys relating to End of Life (EoL) is unambiguous and I would appreciate any suggestions please.

We both feel strongly about wanting all medical interventions possible to live ie we do not want any interventions or withdrawal of care which would end life prematurely / hasten death, even if life is to be in a vegetative state, painful or whatever.

Some of our context is that we don't trust the NHS in this regard. Whilst my hubby & I both 100% trust each other to fulfil each others wishes, we have had to deal with the NHS in EoL situations and each time the NHS pressurised both Donor & Attorney to 'hasten' EoL, despite a PoA and the Donors clear wishes being pro-life (including Donors' spoken confirmation to the NHS staff).

All the examples I have found for the Preference & Instruction sections seem to focus on withdrawal of care ie to end life early, whereas we want to emphasise the opposite plus ensure that what is written is unambiguous and that both Finance & Health LPA's 'dovetail' with each other. We have yet to decide on a replacement Attorney, so need to get the wording right for them too should they be required.

Here is what we have so far in the Finance LPAs -
Preferences :
- (can't think of anything to put here)

Instructions :
- I consent to the disclosure to my attorney of all information concerning me
- My attorney can make all decisions about my share of all assets held in our joint names
- My attorney can make all decisions about all investments held solely in my name
- My attorney can decide that I am to move into residential care if I can no longer live independently AND I can no longer be cared for at home and can dispose of any assets held in my name to enable this

And this is what we have so far in the Health LPAs -
Preferences :

- I would want all treatments necessary that could prolong my life even if the remainder of my life is for example to be in a vegetative state or terminally in pain

- I would prefer not to move into residential care and I would like to be cared for at home

- I would prefer to die at home

Instructions :

- I consent to the disclosure to my attorney of all information concerning me

- My attorney must inform doctors and other medical personnel of my advance decision that for religious reasons I want all treatments that could prolong my life 

- My attorney can decide that I am to move into residential care if I can no longer live independently AND I can no longer be cared for at home

- For religious reasons, my attorney must not consent to life-sustaining treatment being withdrawn even if for example I am in a persistent vegetative state or terminally in pain

Thank you so much for sticking with it if you got this far down the page.
xx

I find that all quite interesting not least, some of the phrases used could suck up vast sums of money in legal discussion.

I will only ask, I trust all your family share this belief?

I feel that if I add any further comment it is likely to get closed very quickly.

Thanks for replying. We don't have any close family (no children, siblings, parents), so there's unlikely to be any legal challenge. It's just the two of us. Hence no replacement Attorney bcos we don't have anyone to choose from!
Re the wording - I have taken the structure from the Office of Public Guardian website where they suggest examples of what to write in the two boxes. The words they use are the same in some of the bullets, others start the same but focus on the ending of life rather than the sustaining of life, and I've just changed the endings.

SKA123

For clarity re the wording I used, I used the Office of Public Guardian help guide which gives example wording for LPA's. 

"If the donor chooses to give their attorneys the power to make decisions about life-sustaining treatment, they can add preferences about this. This can help attorneys make decisions that are as close as possible to the decisions the donor would have made. 

If the donor wants to write preferences, use words such as 'prefer' and 'would like', so it is clear that the donor is giving their attorneys guidance not instructions. Do not use words like 'must' and 'shall'.

For example, the donor might write something like:
- If I were in the last days of a terminal illness, I would only want treatments to make me comfortable. I would not want treatments to prolong my life or that meant I could not die at home.

----

The donor can add instructions about their health, care and welfare. These could include instructions about where the donor lives and medical treatment that fits with their beliefs. If the donor wants to write instructions, use words such as 'must', 'shall' and 'have to'.

Examples:
- I consent to the disclosure to my attorneys of all relevant information concerning me.
- My attorneys must refer to my advance decision to refuse treatment involving blood products, which is against my religion.
- My attorneys must not decide that I am to move into residential care unless my doctor says that I can no longer live independently."


I appreciate that not everyone would choose the same as us, but an LPA is all about ensuring your wishes and preference are made clear ready for when you are no longer able to. We have no family or close friends so nobody is going to care, and therefore the best we can do is to ensure that at least one of us is there for the other when the time comes (hopefully we don't both fall critically ill at the same time!)

Thanks again x

Flugelhorn

Please don't put pressure on your attorney - you don't know how they will find it if you are in constant pain / in vegetative state / distressed and frightened by treatments - just state preferences rather than absolutes. 

BungalowBel

I would have the same preferences as yourself, so thankyou for highlighting this important instruction.  We need to do our PoA asap.

Just to clarify, I would have no objection to MEDICAL intervention being withdrawn if there was absolutely no hope (for example, if I were braindead and being kept 'alive' by machines).  I would still want to be fed, watered and kept comfortable if I didn't die straight away after machines were turned off.

If I were in a Persistent Vegetative State, like Tony Bland, I would want to be fed, watered and kept comfortable until I died naturally, not starved to death like he was.  He wasn't on life support, therefore he was alive and imo his life was as important as anyone else's and it was not up to anyone else to make that decision for him.

https://en.wikipedia.org/wiki/Tony_Bland

Another victim of Hillsborough recovered consciousness after several years and didn't die until 30 years later - who is to say that wouldn't have happened to Bland? 

https://www.bbc.co.uk/news/uk-england-merseyside-58005871

Sorry, rant over.

SKA123

Flugelhorn said:

Please don't put pressure on your attorney - you don't know how they will find it if you are in constant pain / in vegetative state / distressed and frightened by treatments - just state preferences rather than absolutes. 

Thanks for replying. My husband and i will be attorneys for each other and for more than 45 years of marriage we have been very aligned on this subject. I do understand others have different beliefs, but this is the approach we both want to take.

My original post was because I wondered if anyone had experience of writing LPA's where the focus was on sustaining life rather than hastening death.
x

BikingBud

I'm now stepping into where I wasn't going to and I am not a specialist but I am being objective and feel it is important that we have these discussions objectively, so trying really hard to not be judgmental.

You have no close family and being blunt nobody that sees it as essential that your lives are sustained. Yet you wish to sustain those lives even if you are unaware of your own being and you are suffering?

• withdrawal of care which would end life prematurely - Some die young but have had lives full of love, joy and satisfaction, others die old, alone and in pain, suffering. Where do you perceive this premature line to be?
• where the focus was on sustaining life rather than hastening death. - Death is the only certainty, it will come to us all.
  
• We both feel strongly about wanting all medical interventions possible to live - At what cost? And to the detriment of which other patients, perhaps more needy patients? Think Schumacher, the commitment, the cost and then wonder how anybody else could deliver that for you.
  
• I would prefer not to move into residential care and I would like to be cared for at home - How does that balance with the wants above. If you do get left at home then it is quite likely life sustaining treatment cannot be delivered and treatment wlll be withdrawn.
  
•  I would prefer to die at home - Again this is likely inconsistent with your demand to sustain life. Moreover when it is realised that life cannot be sustained who would you expect to take you home?
  
• My attorney can decide that I am to move into residential care if I can no longer live independently AND I can no longer be cared for at home - Whilst you may wish to give them authority to decide can they actually deliver to your wish, have you put in place the necessary funds to ensure this can be achieved? Else the attorney will at best be able to represent your wishes.
• For religious reasons, my attorney must not consent to life-sustaining treatment being withdrawn even if for example I am in a persistent vegetative state or terminally in pain - It might be that this is not their choice as medical staff might be under far greater pressure and be working to constraints that are determined to be more important than your desires. Terminally in pain would suggest that death is near perhaps you mean perpetually?

I feel that setting wishes to decline ongoing treatment, signing DNRs etc is very different to requiring life to be sustained as you are providing an option that reduces so many issues. Whereas you are challenging all of those processes to provide more support for longer and perhaps even after medicine might consider life has expired. I wonder if the OPG might reject the LPA as the requirement is:

The attorneys must always:

• act in the donor’s best interests

And doctors, solicitors and courts may all counter what you wanted as not being in your best interests. 

You don't currently have an attorney and without close family, who might be emotionally invested and share the same beliefs, who might be prepared to fight the establishment for you?

How would you know if they did or didn't?

My thoughts are probably all guff but as I said we should be prepared to address these tricky questions whilst we still have the capacity. 

Savvy_Sue

SKA123 said:

Some of our context is that we don't trust the NHS in this regard. Whilst my hubby & I both 100% trust each other to fulfil each others wishes, we have had to deal with the NHS in EoL situations and each time the NHS pressurised both Donor & Attorney to 'hasten' EoL, despite a PoA and the Donors clear wishes being pro-life (including Donors' spoken confirmation to the NHS staff).

I'll just say that that has not been my experience: on one occasion we felt staff were very keen to do SOMETHING to prolong life at almost any cost. In another, we were reassured that there would be no attempt to restart the heart if it failed (aligning with the known wishes of the patient, but also "no point / inappropriate" in the doctor's eyes), but there were a couple of things which could be tried, which we were happy to go along with.