What can I do to avoid unwanted life-prolonging care?

[Czerwonitz]

I'm gutted but not surprised by the assisted dying Bill result in Holyrood and I'm really quite terrified at the thought of something bad happening and being kept in institutional care in a life I don't want.

I know advanced directives are not legally binding (and I hear that clinicians are currently so paranoid of being accused of assisting a death that some truly awful situations are being dragged out for years even as the family ask them repeatedly to stop it).

Is there anything I can do to make sure that I'm not kept alive in a state I don't want? (Would be grateful to hear from anyone who has to deal with decision making at work about whether there are things I can do to make things clear).

I live in Scotland if that makes a difference but I get the sense it's all a bit uncertain. I hate that this is something to have to worry about (unless you're most MSPs it seems).

This may not be relevant to Scottish law, but have you considered:

Health PoA
A RESPECT firm
Talking to relatives who will listen and make your feelings very clear to them

• RESPECT form

In England an Advance Decision is legally binding, as long as it is correctly signed and witnessed. Main issue is making sure people know it exists - my GP has a copy of mine as well as copies at home and DH and DD know where it is and what it says.

Compassion in Dying has a very good free proforma for writing an Advance Decision plus instructions on how to make sure it’s legal.

If you have capacity to make a decision then you can refuse treatment.

If you don’t have capacity or AD then a ReSPECT form will document your wishes and will be taken into account; similarly your H&W POA can make decisions for you on your behalf (including refusal of resuscitation).

That. I did a form with them, witnessed, signed and handed into my GP surgery. Mine is basically
if I am diagnosed with dementia, I don’t want any life extending or saving treatment from that point onwards
if I have a massive brain injury, I also don’t want life extending/saving treatment

I have a Health and Welfare LPA. My 'attorneys' (close family) can make decisions on my behalf if I lose capacity. They are aware that I would only want 'comfort care', and no treatment thats primary aim is to prolong life, if I have permanently lost capacity.

Unfortunately, advanced directive is not legally binding in Scotland which is a real shocker. With so much variation between devolved governments, I wonder if you could get a consultation with a legal professional. Even if it is a free one at CAB.

I found out I have a copy of the Apoe4 gene. I will be putting this is place pronto!

Thank you for starting this thread OP. I agree with you and find it very distressing that the state can just keep me alive (and expect me to pay £££ for the ‘privilege’) against my wishes. I had no idea about an Advanced Decision or ReSPECT. I have health PoA however I don’t think this means my relatives can tell doctors not to treat unless there is other documentation (in the case of no capacity).

I did my AD form last month...it's uploaded on my details on the NHS app

Oh I didn;t know it could be linked to the NHS app - brilliant, thanks

In Scotland you can ask for an anticipatory care plan and a DNACPR. Discuss with your GP or consultant what measures you want taken etc. So you could be for oral antibiotics but not IV and you can refuse hospital
admissions and accept only care at home etc. You can ask for the GP
to review medication and reduce non essential or preventative medication such as statins or blood thinners that could be preventing massive heart attack or stroke if you felt you didn’t want to prolong life.

Tbh I wish more people would actually have these discussion with their loved ones as I see many people who wish they’d died years ago… yet they get hospital admissions for IVs and antibiotics at the slightest thing…madness.

The state wont keep you alive against your wishes, but if you haven’t written down your wishes and have now lost capacity they have to make a decision for you, and we’re not a society that offers euthanasia so that decision is likely to be that treatment should be given rather than withheld.

A health POA is there to make decisions for you, and they can decide to withhold treatment if they know that that is what you would have wanted. But you do have to give them the confidence to say no.

Dementia isn't covered by the Assisted Dying Bill anyway. By the time you reach the point of having 6 months to live with Dementia you are way beyond having capacity (as the Bill specifies) to be able to make the decision.

Dh and I added a paragraph to our Health and Welfare Ps of A that goes roughly….

’If I should develop dementia, or any other condition where I am unable both to care for myself and speak (with full mental capacity) for myself, then I emphatically do not want any life-saving or life-prolonging treatment. I ask for palliative care only.’

However I did make clear to care home staff when my DM was over 90, with advanced dementia, that I thought it’d be verging on cruelty to have her in and out of hospital*, on drips, etc. - just for the sake of keeping her going.
I’m glad to say that they agreed absolutely.

*in any case a terrible place for anyone with dementia, when they can’t understand what is going on, or why.

TBH from all I’ve ever read or heard, it’s often the relatives, rather than the medics, who insist on treatment when it might well be kinder to let nature take its course, and get very angry/indignant if anyone suggests it. ‘I can’t bear to let Mum go!’ etc.
Not to mention medics wary, I dare say, of Daily Mail headlines on the lines of, ‘Callous doctors wanted Mum to die!’

Although not legally binding, they are seen as 'highly persuasive' in Scotland. For it to be taken very seriously I would suggest that you outlay various scenarios.

For example, someone with early stage 4 cancer may say they don't want CPR in the event of cardiac arrest, thinking of the end of life scenario where there is no useful life-prolonging treatment. However, it would be helpful to consider if they would want CPR next week, if they were in a car accident and their cardiac arrest was purely down to blood loss, for example. Would they want the next couple of years when they are still feeling well?

Scotland has ReSPECT forms - they can be discussed with a medical professional who can record your wishes. For example, many stroke survivors opt for no attempt at CPR and also no antibiotic therapy in the event of a chest infection, but active treatment if they have other infections such as cellulitis.

Basically, the more detailed your wishes, the more likely they are to be followed because they will be clear. If there is any doubt, the medical team will have to act in what they believe to be your best interests, which may involve life prolonging treatment you think you may not want.

It's also very difficult to predict how you might feel after a life-altering event. Many people think they wouldn't have anything to live for if they were paralysed, for example, but actually, many people who are paralysed cope well. Others don't, and there is a case I remember where the young woman decided that life wasn't worth living because she had previously been a very active person and couldn't see how she would enjoy a less active life.

Thank you! The English system sounds so much better and more reassuring - I take it we don't have anything like the RESPECT form? I know my GP will think I'm a maniac for making an appointment about this but it's important to me.

A friend's dad has been bedbound for three years now and they keep treating him aggressively for sepsis despite all his children begging the GP to allow him to die peacefully. The whole family is traumatised at this point.

Thank you! It sounds as though our system is more geared up for people within a pathway than preparing for the worst?

I know some people may change their minds but I know I won't.

Dementia is a major problem in this respect, as PP have pointed out.

A close friends DH has had dementia for about four years now and she has been told he could live another ten.

Ten years of being non verbal, unable to walk or feed himself, has to be hoisted out of bed. Doubly incontinent. Rarely opens his eyes and doesn’t recognise her or his own children.

It really is criminal to keep him alive.

It's awful. I get that it's also incredibly complicated from a capacity point of view. I would absolutely want an exit plan at the point of diagnosis though (and life would be better if I knew this were possible).

How is being kept alive? Is it medication for drugs such as heart conditions/blood pressure etc?

I know of an elderly person who had been very academic before dementia struck. Medical staff suspected she had lung cancer but everyone agreed not to put her through scans. Despite the variety of health conditions she lived for multiple years. No one could say she had 6 months to live so assisted dying would not have met this situation

Yeah the Bill wasn't a perfect solution and I doubt many people could have availed themselves of it but the principle was so important

I HATE that I will probably have to suffer because other people don't want to have to think about quality of life

How do you upload it to the app? Sounds easier than having to explain it to GP.

Gave the form to receptionist and said I wanted it uploaded. Never saw dr

I worry this means they don't take it seriously. I absolutely don't want to be kept alive after a stroke that leaves me incapable of certain basic things. I don't care how many others find new meaning in that state fair play to them I want out. I am so angry we can't have assistance to die when we want but at the very least I want to be allowed to die under pain relief of pneumonia or starvation.

My DF stated frequently that he did NOT want to be kept alive, quality over quantity, etc. But as his abilities left him, he was just as definite in wanting treatment and NOT wanting to be "left to die". What you want now for your future self might not be what your future self would choose.