Advance Decision to Refuse Treatment

Many of the people we talked to were unsure what an Advance Decision ( also known as an Advance Decision to Refuse Treatment, ADRT or a ‘living will’) was, whether it was legally binding, how it differed from a normal will and how they could go about getting one. Only a minority of those interviewed said that they definitely intended making an ADRT. Of those who did, some had the paperwork assembled already while others were putting it off until later, or waiting for a suitable occasion to discuss it with family.

An Advance Decision allows a person to make a legally binding refusal of medical treatment in advance of a time when they lose the ability to make the decisions for themselves (Mental Capacity Act 2005). It can be used to set out the specific circumstances in which a person would not want a treatment to be given, or when a treatment should be stopped. It can be used to refuse any treatment, including life-sustaining treatment such as resuscitation, breathing machines, antibiotics or feeding tubes. An Advance Decision will only come into effect if a person loses the capacity to make the decisions for themselves. (See Compassion in Dying for more about advance decisions.)

There is no requirement to use a solicitor to make an advance decision. Many solicitors offer this service, although there is likely to be a fee. Advance Decisions do have to contain certain wording to be legally binding and therefore it is best to follow a template form. Compassion in Dying provides an advance decision form free on their website. (See Information- advance decision section for more details about what is needed to make an advance decision legally binding.)
One man, who was dying of bladder cancer, said that he had arranged everything with a solicitor and had signed all the necessary documents to make sure that he wasn’t resuscitated. He felt strongly that he did not want to be kept alive artificially. He had discussed the situation with his family and with his GP.

He has signed legal documents to ensure that he is not resuscitated or kept alive artificially.

Age at interview 84

Gender Male

Age at diagnosis 82

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Have you thought about the idea of a ‘living will’ and resuscitation?
Yes indeed. In fact I feel strongly that I don’t want to be kept alive artificially. I’m now eighty-five and I’ve had a very good time and I don’t want to be a burden in a sort of inanimate way. And so I would rather just die cleanly as it were and weve arranged this with our solicitor, and weve signed the documents to say that I don’t want to be resuscitated and I’m very happy with those arrangements.

And how would anybody know that if you were taken into hospital quickly?

Well that’s a good question. Weve told our GP of course and we hope that he will transmit the information if he arranges for me to be admitted in an emergency. It’s in the hospital notes but of course my hospital notes are now so thick because I’ve been voluminous in the uses I’ve made of medical services and so nobody would easily find that.

It’s quite a problem isn’t it.

Well I think that it depends on the family making that point on my admission if that happened.

Did you discuss that with the family before you made those sort of decisions.

Oh yes.

So that’s fairly clear from the family’s point of view.

I think so, yes.

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Although only one man said that he had signed a legal document, many other people said they had made some sort of statement about the way in which they hoped to die, and had taken steps to communicate this to others. Some of these people said that they had made a ‘living will’, but from what they said it seems unlikely that they had signed the documents for a legally binding ‘advance decision.

People had made their wishes known in various ways. For example, a man with testicular cancer had told three people that he did not want to be kept alive with lots of machines or other artificial means. He said he would not want to be kept alive if he had a stroke or sudden illness that impaired his ability to communicate with other people, or if he became totally dependent on outside help.*

If he loses his ability to communicate he does not want to be revived and he wants a peaceful death.

Age at interview 52

Gender Male

Age at diagnosis 37

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Now one of the things, talking about things that I want to do… I have very strong views on what I want in the way of medical care, and, I think you call it a ‘living will; All I have… I’m not a model. I’ve not got these fantastic features that girls run after. I recognise that I’m fifty two years old. I don’t use Grecian 2000 to get out the Grey. I refused to. I like my hair the way it is. All I have is my intellect. I’m told that I have a very high IQ and I’m very intelligent and because of that I can handle physical disability. As I said, when I was a child I had polio and I handled that;

I use a wheelchair a lot when I’m out and that doesn’t bother me because I see that as a positive aid letting me do my shopping, letting me go places to shopping centres and malls and places that otherwise I would just be too exhausted to go round on foot;

If I were to have a stroke or any sudden illness that impaired my ability to communicate and my ability to interrelate with other people, that made me totally dependent on outside help, I’ve made it very clear to three separate people that I do not wish to be revived under any circumstances. I don’t want to be a burden on other people. I don’t want to be totally dependent. I don’t want somebody changing me and cleaning me and spoon feeding me;

The biggest joy that I have is the fact that I can talk to my friends and conduct an intelligent conversation and answer questions on University Challenge and all those sorts of things, and enjoy a good film, and talk about art an; things like that. If I can’t do those things and I’m just detached completely in my own little world, I don’t want to be a part of it and I can’t handle it. And also going onto that when the real final day or hours come I don’t want masses of machines and tubes I want them all taken out, I wanna be as peaceful and as natural as possible I don’t want them to, fill every little hole that I have in my body with something you know;

I just want it to be natural. I want all the stuff taken away. Only the things that if I need a breathing machine, fine but apart from that I don’t want drips, I don’t want lines, I don’t want tubes, I just want it to be as natural and as quiet and as peaceful as possible.

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A man with progressive multiple sclerosis had instructed his doctors (at the hospital and the hospice) and the district nurses, to write clearly on his medical notes that he did not want to be resuscitated.*

A woman with motor neurone disease had written a ‘letter of wishes’ which specified that she did not want to have a tracheotomy and she did not want to be force-fed. She had given the letter to staff at the hospice*.

*These verbal and written instructions would only be legally binding if they were signed and witnessed but these wishes could be taken into account by the person’s healthcare team when assessing the person’s best interests.

Some people said that they intended to make a ‘living will’, but hadn’t got round to making one. A woman with cancer of the kidney said she planned to make one because she didn’t want to be resuscitated if she were ‘on the way out’. She had consulted her solicitor, who had given her the appropriate forms to complete, but she needed more time to think about ‘the actual terms and conditions’. She didn’t realise that a ‘living will’ was a legal document.

She intends to make a living will because she would hate to be resuscitated if she were on the…

Age at interview 58

Gender Female

Age at diagnosis 56

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Earlier you said you had some opinions and thoughts about the ‘living will

Yes, yes. Actually when I went to remake my will shortly after having my diagnosis, I asked the solicitor how to go about making that and he wasn’t all that sure but he kindly researched it on the web and gave me some printed forms which to be honest I haven’t filled in though it is my intention to;

I was thinking last night in the concert ‘ooooh you know, I want to be here in this lovely world as long as I can be. That’s with the proviso that once my quality of life becomes so poor that I am in pain and I can’t do anything or whatever. I certainly don’t want to be kept alive just for the sake of it. So I must get on and do the form. As I understand it at the moment, making a ‘living will doesn’t have any legal force but my GP suggested putting one everywhere that I could think of with the solicitor, with her, with my children… so that if I am taken into hospital at any time or unconscious or whatever, they are likely to know;

I definitely don’t want to be resuscitated if I am on the way out. I can think of nothing worse really. I have to say, now we have been talking about, ‘Can I be frank with my children?’ I would certainly give a copy to my daughter. I suppose, I could broach it with my sons but I would slightly hesitate ’cause I think that would worry them. So maybe I’ll put it with my GP and in my hospital file, I suppose is another sensible place, with the solicitor.

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A woman with chronic obstructive pulmonary disease had recorded instructions about her death. She didn’t want to be resuscitated and she didn’t want to be connected to ‘breathing machines’. She didn’t want to return to intensive care because she didn’t like the clinical atmosphere and the lack of control that she had over her own body. She was determined to die with dignity and was aware that she had to make a proper ADRT ‘living will’ in order to make her instructions legally binding. She had notified the hospital that she didn’t want to be resuscitated but had temporarily rescinded her instructions while she was having teeth removed (if you have mental capacity, you can override your Advance Decision verbally at any time.).

Has written a letter to say that she doesn’t want to be resuscitated and plans to make a proper…

Age at interview 41

Gender Female

Age at diagnosis 24

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I want to take control now. I don’t want to be resuscitated. I don’t want intervention. If it’s going to happen, I want it to happen. I don’t want to be in a vegetative situation where my family have to sit round a machine that’s breathing for me and thinking for me. I want them to remember the Mum that fought to the end and just went to sleep.

Have you written this out?

I’ve written it out myself as I want and instilled it in a letter but I’ve got to… I’ve evidently got to get a proper ‘living will done. I have notified my hospital that I do not want to be resuscitated, something I did have to rescind recently but it’s back in place again now.

Why did you have to rescind it?

Because I had to have surgery on my mouth and it was just in case anything went wrong during it, but it would be a bit pathetic going out having your teeth removed. So, I decided after great talking with the doctor that I would agree to it being removed while that was being done. If anything went wrong they would resuscitate me but I was still tongue in cheek, well tried to be, while it was happening because I did feel that if I had to go out then, actually I didn’t really want to come back;

If I’d known, you know it was going to be so uncomfortable afterwards I probably would have changed my mind anyway. But apart from that, it’s something I’m in the throes of sorting out. I will keep a copy with me at all times so wherever I am nobody tries to resuscitate me or if anything else comes along, that I will refuse treatment.

Have you talked about the kind of terms you’ve specified with anybody?

My consultant. Weve talked. Hes known me for a very long time, since I was a kid and it’s hard for him; It’s hard for me. He knows I will fight for as long as I can but he also knows that I will go with my dignity.

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Some patients worry that towards the end of their life they may be given medical treatments that they do not want. Compassion in Dying has an information line and produce leaflets for people explaining their rights at the end of life.

An Advance Decision cannot authorise doctors to do anything unlawful. So in the UK this legal document cannot ask a doctor to practice euthanasia. However, a few people we talked to thought that a ADRT was more or less the same thing as euthanasia, and thought that both were morally wrong (also see ‘Thoughts about suicide, assisted dying and euthanasia‘).

Thinks that both a living will and euthanasia mean that life may be shortened artificially and…

Age at interview 74

Gender Male

Age at diagnosis 72

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Have you any particular opinion about what people call a ‘living will; Have you heard of that term?

Yes I have.

Could you tell me what you think about it?

Well, I can understand it but I think I believe in the teaching of my church that it’s not acceptable.

How would you define a living will?

Ah, a living will is an instruction or perhaps not instructions but agreement to those who… giving authority rather, to those who are looking after a patient that if the patient feels that life is no longer worth living or bearable to end that patient’s life;

So you wouldn’t ever think of making one for yourself?

I would hope not, no.

Because of your religious beliefs.

Yes, yes.

And there is a big debate now on nationally, and internationally about a related subject. Some people call it euthanasia, some people call it assisted suicide; What do you think of that?

Well, I can’t… I mean… maybe there is a difference but I think living wills and euthanasia are the same thing; Yes.

All the same. And so your view is influenced by…

I suppose euthanasia is slightly… More… the carers, or relations or whatever it is making the decision rather than the patient; But the end result is the same that life is terminated artificially.

And you would be against that because of the faith you’ve got?

Yes, yes

So all the discussions about it becoming a national policy as it is in some countries such as the Netherlands, what do you think should be the main points in the debate in our country?

I think morally and ethically it’s wrong… It’s easy for anybody who is not suffering enormous pain, incurable pain because I believe there are some pains that are… can’t be conquered by medicine. It’s easy for somebody else to say that. Good comes out of pain. Good comes out of suffering. I think it does.

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Message to others with a terminal illness

People offered many different types of advice to other patients, based on their experiences at different stages of their illness. People are all different and...