Is Last Years of Life a better term than End of Life

Dear Mike,

I think this would be a better and more acceptable term to use, especially when trying to broach the subject with Residents/ patients and their families. We have noticed that a lot of Care Homes are loath to bring up the subject of End of Life wishes, usually just recording that people would 'prefer not to discuss at this time'. It's understandable that people wouldn't want to discuss 'End of Life' wishes or as some homes call it 'Death Wishes' but perhaps if the termination didn't sound so blunt people may be more willing to discuss their feelings and wishes on the subject.
Pam Durrant

Hello Mike. I don't like the term end of life at all. It is.non specific and therefore of little value. If someone is dying why not simply say "he is dying?" When a baby is born we say, he was born and not, "he has begun his life." If we as professionals are unable to say death and dying what kind of message are we giving to those we care for?

I work on a palliative care rapid response team. When a patient dies at home a relative Will phone the team.and say he has died or I think he has died. They don't say I think he is end of life.

Back to your question. . Last years of life is useful in some instances but many of the patients we care for are indeed in that time frame or perhaps in the last month's, weeks days or hours

Hi Richard, I think there are several interesting points in your reply - but I don't want to comment at the moment, because I don't want to impose my own views on this one: I'm trying to resist the urge to 'chip in' for as long as I can manage that !

Where I work we use a 'future wishes' form. This covers mostly all to do with EoL care including funeral arrangements etc. We pass the document to family members to complete in their own time. With most families you know who you can approach & who you cant. With a lot of people that are approaching end of life especially those on palliative care, they may not have 'last years of life' so I feel that wording needs to be used appropriately. but I do think in my home when people come in I may suggest using 'last years of life' as this may fit some but not others.

Does anybody have a really good example of a 'Future Wishes'/ 'Last Years of Life'/ 'End of Life' form for Residential Care Homes to use, which they are happy to share?

Also any tips on when and how to broach the subject with residents or their families? I have already looked at the resources on the Dying Matters website which are helpful.

Hi Pam

In terms of future wishes, the Alzheimer's society have one, that works in terms of the main areas, and does tend to focus on getting things down before capacity becomes an issue. The Suffolk County Council website also has some information and templates that you might find useful. When doing my own plan, I used a combination because I also wanted to make comments about sexuality as well as physical and emotional care. I do feel strongly that we more we can talk about the whole issue of what happens at the end more openly the better experience we all stand a chance of getting. We don't baulk at making a will, to put our financial affairs in some order and if we approach this n the same way it can be very helpful for everyone. { I've only got my funeral to sort now and then I'm all set, but I intend being around for a good while yet. }

Liz

Thanks for that Liz,

I'll take a look. Yes and like you I need to practice what I preach and do my own.

Pam

I'll explain why I 'like' Last Year(s) of Life (LYoL) better than End-of-Life (EoL).

When I asked Clare Thormod, the GP who told me she uses LYoL instead of EoL, if she had originated the term, she e-mailed Liliana Risa (another London GP) and me, telling me 'I was introduced to it by my colleague Liliana Risi , LYOL Clinical Lead in Tower Hamlets a neighbouring CCG. I think it was her original concept.'

Liliana e-mailed back with an e-mail which started with:

'The purpose of this note is to let you know that has been a change in Tower Hamlets since 2012 from the use of 'Palliative' or 'End of Life' to 'Last Years of Life' in consultation with the UK National End of Life Care Programme.

This to promote normalising death and dying and because there no consensus on the definition of 'Palliative' or 'End of Life' or when and how to use these terms.'

I (Mike) am very aware, that people are using the same terms to mean different things, for LYoL/EoL: the term 'end of life' most commonly indicates 'somewhere inside the predicted final year of life', but a substantial number of authors use EoL to mean 'somewhere inside the predicted final 6 months of life', and some people think of EoL in terms of the final few days or weeks of life. Personally, I tend to look from the patient's perspective, so I think there is an argument that 'EoL' could start when the patient is told of a terminal diagnosis [which must, surely, 'affect a person's thinking'] - most doctors and nurses, think much more in terms of clinical situations during the progression towards death. And whenever post-mortem statistics are collected, they use the date of the death and just count backwards: so 'final year of life' in post-mortem analyses actually means the final year [using the advantage of hindsight] while pre-mortem, 'final year' is a much less precise term (basically an 'educated guess' in some situations).

You can find a very similar 'mess' for the meaning of the word 'palliative'.

A serious problem for LYoL/EoL, is that labels once attached can be 'taken as too meaningful' - many 'labels' used during EoL 'imply more certainty about the situation' than is the reality (and I mean by that, 'more certainty than the people who really understand the situation, would claim to be the case': in essence, I'm saying that these labels tend to mislead 'the inexpert').

The point about Last Years of Life, which I tend to write as Last Year(s) of Life, is that I find it much more OBVIOUSLY 'unclear' than End of Life - so, it prompts 'thinking about its meaning'. Liliana seems to have made the same comment in her e-mail, when she wrote:

'Since changing to 'Last Years of Life' in June 2012 anecdotally the response both amongst patients, GPs and social care colleagues has been astoundingly positive to this change.

We believe it has to do with the 'S' on 'yearS' which makes it easier to frame a context for planning in uncertainty while still retaining hope and recognise that services need to be flexible yet prepared to accommodate change and enable an environment and support for a 'good death'.'

Although I (Mike) don't like the term 'good death' - I've already explained why on this website:

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=674&forumID=45

That discussion, did highlight exactly how easily 'discussions can be at cross-purposes' for LYoL/EoL - I only object to the label 'good death theory' (the theory that behaviour can improve the experience of dying, is fine - but I don't see how most laymen can 'see deaths as good') but it took ages to make that clear to another poster.

I can understand why some HCPs prefer LYoL as a 'softer' term than EoL, but I must point out that until patients understand 'that they are dying' it is even harder to get their wishes/decisions about 'how they want to die' out of patients: and it can get dreadfully confused, and contested between HCPs and 'family', unless everyone 'is trying to do what the patient wanted'. Leave the decisions to the patient - much simpler, provided you can get the patient to tell you his/her decision.

Also, I see no need for a 'label' for 'the dying phase' - and I think labels there are actively UNHELPFUL. I think it would be better if notes simply stated the opinion of the senior clinician: 'I think this patient will be dead within a week' (or whatever the prediction is) is as accurate and informative as it is possible to be - why, do we also need 'a label' ?

I definitely HATE the label 'Palliative Patient' (because there is absolutely no reason why a patient might decide to have some active, and some palliative, treatments at the same time) although I have no problem with a treatment being described as 'palliative' (where the term simply means 'does not cure the underlaying medical condition').

I have just come across a recent Marie Curie piece, which uses Last Year(s) of Life:

https://www.mariecurie.org.uk/globalassets/media/documents/research/PeolcPSP_Final_Report.pdf

For example, on its page 9:

'The steering group took some early decisions to
define, and - where necessary - limit, the scope of
the project. The project considered palliative and
end of life care for adults with long-term illnesses
who might be in the last years of life. The steering
group consciously decided to keep the definition of
end of life broad to try to reach as many patients
as possible who might be willing to identify with
that definition, as well as frail elderly people who
may not have a diagnosed terminal illness.'

So the term (LYoL) seems to be being increasingly used.

Hi Mike ,
I think the last years of life is a much better term than end of life , I work with people living with dementia , saying a person with dementia is end of life is awful , you can not determine how long a person with dementia or any other illness will live for, as we know the human body is amazing and some people out live their diagnosis by years , end of life is like a sentence hanging over a persons head . If we do need to label a person who is dying LYOL sounds a lot better .

Thanks Michelle,

There seem to be two main reasons, why people prefer Last Years of Life.

Some people prefer it, because 'End of Life' seems 'harsher' as a term.

But some of us, prefer it because of the 's' at the end of Years - I myself often write Year(s) - casts 'doubt' about the accuracy of the prediction, as to how soon someone will actually die: as you point out, nobody can be very sure of that.

Someone on Marie Curie has recently asked essentially the same question, at:

https://community.mariecurie.org.uk/chat/list-of-terminal-illnesses-definition-of-a-terminal-illness-etc

He wanted to know exactly what 'terminal' means - he commented:

' I've searched on Google for "A list of terminal illnesses" and how would you define a terminal illness. But nothing much is there. Is this because people don't want to be labeled and/or defined as such or is there a medical 'grey' area of how illnesses/conditions defined?'

In fact, the biggest problem with 'labels' and 'dying' is the very unsatisfactory way that the concept of 'expected death' is used/handled in contemporary Community Death policies - again, the problem seems to be an inability to properly incorporate 'an inevitable uncertainty about how imminent a death is' into post-mortem behaviour.