End-of-life care: getting it right for more people, more of the time

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On 22 September we’re hosting a one-day conference – Innovative approaches to end-of-life care – highlighting some of the challenges, but also celebrating national and local improvement programmes.

End-of-life care is one of the nine key components of care for older people outlined in the report I wrote with colleagues in 2014. I also spend much of my working life supporting patients close to death and their families, so I’m delighted we’re giving this issue prominence.

Around half a million people die each year in England and Wales. We’re all going to die eventually. Some will die suddenly, unexpectedly, with little chance to plan or even be aware of what’s happening. Others may be diagnosed with a rapidly terminal condition such as late-presenting, advanced cancer. Even in this scenario, most will have at least a few weeks to plan for the end and to ensure a relatively ‘good’ death. However, with a rapid rise in the number of people in the UK aged over 65 and an even larger rise anticipated in those aged over 80, most of us will die with frailty or long-term medical conditions and will start to rely more heavily on health and social care services, making the need for a conversation about personal preferences regarding end-of-life care even more pressing.

The Mental Capacity Act has helped start some conversations about advance-decisions and welfare attorneys, and developments such as the Leadership Alliance for the Care of Dying People’s One chance to get it right report and the Gold Standards Framework have helped staff in the NHS and care home sector to develop plans with more people. But this is not the norm.

So what does happen when people die in England in the 21st century? Despite too many poor experiences and media coverage that tends to focus on scandal over solutions and success, there is plenty of good. A recent Economist Intelligence Unit report rated the UK the best place to die out of 80 countries. And the latest National Survey of Bereaved People reported responses from more than 21,000 people – 75 per cent of whom rated their loved one’s care as ‘outstanding’, ‘excellent’ or ‘good’. This is something we should celebrate, though we still can’t be complacent about the 10 per cent of experiences rated ‘poor’.

Hospice care was considered to offer the best support, security and control of symptoms, while home offered perhaps the most dignity and control – but often additional worries too. Nearly half of us still die in hospital – even though over two-thirds of people say they would prefer to die at home given the choice. And far too many care home residents are admitted to hospital to die. However, we should not crudely reduce discussion of quality in palliative care to where people die. Some people will die in hospital and some will actively choose this when death is near, even when offered alternatives. And we can’t assume that end-of-life care in hospital is inevitably done badly. Place of death certainly matters, but it is not the only factor when it comes to discussing quality in palliative care.

To improve palliative care and support both in hospital and elsewhere, we ideally need a bigger specialist palliative care workforce. According to the Royal College of Physicians consultant census there are only 519 consultants in the four UK nations. And the National Council for Palliative Care workforce report showed we have fewer than 5,000 specialist nurses. We also need more hospice places than we currently have. And it is essential to address the crises in social care provision and the primary care workforce.

There will never be enough specialist palliative care provision to help everyone, all the time. And even with specialist care available, many other general professions, services and charities such as Macmillan, Marie Curie and Dementia UK (via Admiral Nurses) play their part in helping people to die well. Good end-of-life care skills need to be everyone’s business. A binary scenario in which people either see a specialist palliative care team or have a bad death can no longer be tolerated.

We’ll touch on all these subjects and many more during our conference in September. Most importantly, several sessions and speakers will focus on how things can be improved and are being improved right now within our services. Sometimes ‘innovation’ is as much about replicating the things that we already know work, but making them the norm rather than rare exceptions.


Mike Stone

Retired Non Clinical,
Comment date
12 September 2016
The link to the Mr Justice Jackson story does not seem to work. I have the webpage I wanted to link to open in another browser window, and copying directly from the browser window:


If this still fails to work, try putting the wording below into a Google search:

Mr Justice Jackson ruled against the ‘medically necessary’ amputation of the patients gangrenous foot

Mike Stone

Retired Non Clinical,
Comment date
12 September 2016
The one-day conference, is about End-of-Life Care. EoLC.

Professionals like 'wrappers'. It could be suggested that EoL Treatment is the least-encompassing 'wrapper', followed by EoL Care, followed by EoL Support and EoL Intervention and finally, inclusive of everything, EoL Behaviour. But these 'wrappers' are not necessarily helpful: treatment is usually used in the context of 'something which is provided by clinicians' and care it typically interpreted as 'non-clinical support which can be provided by family carers' - so, where does first-aid, performed by a family carer, fit ?

Personally, I usually write about EoL or EoL 'Beliefs, Behaviours and Mindsets'. My 'definition' of EoL starts with a terminal diagnosis, and ends some time after the death - because I write about immediately post-mortem behaviour for EoL Home Deaths, and that includes the behaviour of any police officers who become involved.

In essence, my position is that 'the discussion' for EoL, must be of everything which affects the patient and those close to the patient.

Currently, the 'wrappers' are too small, and the people discussing the issues are to exclusive: this needs to change.

For example, our law, and our judges, now apply a ‘from the patient’s perspective’ approach, to mental incapacity and best-interests decision-making. Historically, there was a strong emphasis on preservation of life, and attempted suicide was of itself considered enough to prove ‘a mental disturbance and removal of capacity’. Neither is now true – judges no longer argue that suicidal patients automatically lack mental capacity [when they refuse to be treated during a suicide attempt]. And preservation of an incapable person’s life, does not necessarily sit above the person’s ‘experience of life’, as the court case (Case No: COP 12749739) reported here demonstrates:

https://ukhumanrightsblog.com/ 2015/10/13/court-of- protection-upholds-the-right- of-a-confused-lonely-man-to- refuse-treatment/

Mr Justice Jackson, ruled against the ‘medically necessary’ amputation of the patients gangrenous foot:

‘The judge was sure that it would not be in his “best interests”:

… to take away his little remaining independence and dignity in order to replace it with a future for which he understandably has no appetite and which could only be achieved after a traumatic and uncertain struggle that he and no one else would have to endure. There is a difference between fighting on someone’s behalf and just fighting them. Enforcing treatment in this case would surely be the latter.’

I am somewhat troubled, that Baroness Ilora Finlay, Chair of the National Mental Capacity Forum, in her debut blog for Social Care News, writes:


‘The Act places an enhanced duty of care on a range of health and care professions – including clinicians, social workers, carers and care providers - to pay full and respectful attention to a person’s wishes and to consider carefully what is in their best interests.

Any care decisions must be taken with a view to preserving their dignity, safety and liberty as much as individual circumstances allow. And even if that person is deemed unable to make their own decisions, they must still be an active participant, as far as possible, in processes intended to keep them safe and healthy.’

The Baroness is leading a group which has the objective of promoting better implementation of the MCA – how does the final sentence above, which to me implies that the ‘objective’ of best-interests decisions involves ‘keeping the patient safe’, fit with Mr Justice Jackson’s ruling that it was in the patient’s best interests to allow him to die ? It clearly does not fit – the MCA’s guidance/requirement for best-interests decision-making, is not so much about ‘safeguarding the patient’ as it is about ‘looking from the patient’s own position, at the acceptability of the consequences of the decision’.

This ‘new world’ - the world guided by ‘patient individuality’ and not by those older, but ‘easier to apply’ concepts (preservation of life; suicidal patients automatically lack mental capacity; and ‘doctor knows best’) - is very much a challenge for working professionals.

Hospital nurses write sensible and 'empathic' pieces, about the importance of considering how recently-bereaved relatives will be affected by behaviour after death: for example 'avoid walking past the mortuary if you are taking a relative to collect forms'. But while hospital nurses write such things, the police seem to consider that if an EoL patient dies at home and it is not clear the death will be certified, that very intrusive investigative behaviour is justified immediately post-mortem: this confuses not being sure of why a patient died, with the presence of evidence of foul-play. It is also, from my 'family carer' perspective, unacceptable behaviour - because it fails to balance the need to investigate a death, against the damage to just-bereaved relatives which overly-intrusive investigation immediately post-mortem, will almost inevitably cause.

We need wider wrappers, more diverse participants in EoL discussions, and less of what I can only describe as 'trying to create a jigsaw puzzle by shaping the pieces from individual blocks of wood and then trying to force them to all fit together' instead of the correct 'cutting the board into pieces'. I'm not claiming that I know how to do it - but I am claiming, that unless it is achieved somehow, patients and especially family carers, will continue to be badly affected by professionals whose behaviour is too-strongly-guided by their own objectives, and whose beliefs are too-strongly influenced by their own working experiences.

Apologies if the above does not 'hang together' very well - I wrote it 'on the fly'.

Mike Stone

Retired Non Clinical,
Comment date
04 September 2016
David Oliver and I both, I believe, consider that each of us ‘thinks about ‘the big view’’: although David tends to write about what I would term the service provision for end-of-life care, and I write about the decision-making during end-of-life. I think this ‘wider picture’ versus ‘fine detail’ distinction is probably fundamentally flawed: certainly I do read the ‘fine detail’ of the Mental Capacity Act, but then I distinguish between ‘a rule’ and a ‘pointer’. I then incorporate the ‘pointers’ into my ‘holistic understanding of the Act’ - and it is this ‘holistic understanding’ of the MCA which I then use in my thinking, but the ‘rules’ are stand alone. To be a bit clearer:

This is ‘a rule’ in the MCA:

61(2) A person is not qualified to be a Special Visitor unless he—
(a) Is a registered medical practitioner or appears to the Lord Chancellor to have other suitable qualifications or training, and
(b) appears to the Lord Chancellor to have special knowledge of and experience in cases of impairment of or disturbance in the functioning of the mind or brain.

But section 4(6) of the MCA, for example, is a ‘pointer’:

4(6) He must consider, so far as is reasonably ascertainable—
(a) the person’s past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity),
(b) the beliefs and values that would be likely to influence his decision if he had capacity, and
(c) the other factors that he would be likely to consider if he were able to do so.

Section 4(6) is saying that:

You must try to work out what the incapable person would have decided if he was capacitous, and in doing that you must consider everything which would have affected the person’s decision [note: that should be implicit – if ‘you need to figure out what he would have decided’ is the objective, failing to consider factors which the person would have considered is clearly a flawed methodology]; and you must also consider the wishes, etc, of the currently incapacitous person.

There is a lot of ‘debate about detail’ for the MCA, and there was a lot of discussion in a Law Commission consultation about the issue of whether the MCA should support ‘supported decision-making’ instead of ‘substituted decision-making’. I have written about this, explaining my interpretation of the [logical] interpretation of section 4 of the MCA, and then asking a question. My piece is at:


The question I asked, was:

‘Is my proposal, or interpretation, of how section 4 best-interests decision-making should work, substituted decision-making, or is it closer to supported decision-making ? I am only allowing - if any can be found - people who 'can defensibly 'think like the patient thinks'' to actually 'make' best interests decisions.

Isn't that 'proxy supported decision-making' - because it requires a deep understanding of 'the patient's take on life' ?

By contrast, isn't genuine 'substituted decision-making' a process where you allow a person who doesn't 'deeply know the patient as a person' to make the decision, thereby risking 'that the decision-maker projects his own values into the decision' ?’

There is an excellent video about the MCA on the SCIE website – you can find a link to it in my piece at:


There is also an online learning tool for the MCA on the SCIE website (well, there was a few months ago, when I spent some time discussing it in detail with the SCIE’s MCA lead).

There is a scenario in the learning tool, which features ‘Robyn and Anne’. In my opinion it is flawed – and I think the SCIE’s MCA expert agrees that I am probably correct, at least in theory – and I have written about it in my piece ‘The SCIE Robyn and Anne scenario compared to my Alan and Liz scenario: the essential difference between 'informed consent' and 'best interests'.

The piece is at:


The ‘problem’, is that the scenario fails to properly take into account the level of ongoing close contact, between Robyn and Anne: with the consequence, that the tool suggests Robyn has to make a best-interests decision, when based on the scenario, Robyn should just be ‘applying Anne’s patient autonomy’.

Robyn would not – certainly should not – be ‘making a best-interests decision’ in the scenario as described: and if possible, people should be doing everything possible to avoid making best-interests decisions, which unfortunately is not ‘the system’s current approach’:


Mike Stone

Retired Non Clinical,
Comment date
03 September 2016
I stumbled across this piece, when I searched the KF website after recently commenting on a piece about community nursing.

I don’t understand how Professor Oliver manages to find enough hours in the day, to fit in all of his work, ‘blogging’, and other activities ! These activities include what I believe I described in a BMJ piece as ‘an episodic e-mail discussion about MCA/EoL issues’ with me: David and I have been engaged in that over recent weeks, and having just found this piece, I think I’ll add ‘a contribution to our discussion’ here, instead of in an e-mail to David.

I sent an e-mail to David a day or two ago, and I wrote at the start:

‘I am not saying that an MDT cannot make best-interests decisions – my position is the two-fold:

Anybody who is sufficiently well-informed to defensibly claim to satisfy 4(9) can make a BI decision;

Whoever is making a BI decision, should be starting from the position of ‘how could I arrive at a better BI decision ?’’

David sent back that he agrees with those two statements – I’ll come back to what agreeing with those would lead to, later. First, I’ll digress a little, and explain ‘how I see’ the Mental Capacity Act.

The MCA does two things: it enshrines genuine Informed Consent in English Law, as the consultation process for mentally-capable patients. Informed consent is not the same thing as this rather vaguely-defined ‘concept’ of ‘shared decision-making’ which is often mentioned by clinicians. Informed Consent confines the clinicians to providing information to the patient, and the patient considers this clinical information in the context of wider-life factors, and the patient then either consents or refuses [the offered treatment]. David and I, are not necessarily in agreement about whether a patient is required to ‘explain why I decided as I did’ - see my piece at:


The second thing the MCA does – and it does this less clearly than it defines Informed Consent – is to define ‘the rules for best-interests decision-making’ if the patient is mentally-incapable [and if the patient has not ‘projected a decision forwards [from capacity] into incapacity’]. Most of the MCA’s description of ‘best interests’ can be found in sections 4, 5 and 6. There is often a ‘very lax’ use of the word ‘consent’ when people write about mental incapacity (best interests REPLACES ‘consent’), but it is true to state that:

‘All of the English Law which provides protection against the potential charge of ‘intervention without permission from the [adult] patient’ can be found within the MCA, provided the person considering the intervention ‘is involved with the patient in an ‘ongoing way’’’

The only really clear thing about best-interests decision-making, is the need to ‘consider the patient/person as an individual beyond ‘as a clinical [or other] ‘situation’’ – as section 4(6) of the Act puts it:

4(6) He {i.e. the person making a best-interests decision} must consider, so far as is reasonably ascertainable—
(a) the person’s past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity),
(b) the beliefs and values that would be likely to influence his decision if he had capacity, and
(c) the other factors that he would be likely to consider if he were able to do so.

Those things are NOT ‘clinical’ – a best-interests decision-maker is not required to be a clinician or a lawyer, any more than a patient is required to be a clinician or a lawyer in order to engage in the process of Informed Consent: best interests requires an understanding of ‘the patient as an individual’ {this is a tricky concept to word properly – and it is also deeply problematic in many situations, such as long-term dementia} somehow applied to the patient’s clinical and wider-world situation.

So, going back to one of those statements which David agreed with:

‘Anybody who is sufficiently well-informed to defensibly claim to satisfy 4(9) can make a BI decision’

If you cannot ‘think like the patient’ then in my opinion, you simply cannot make ‘a genuine best-interests decision’ – and, it is usually only the patient’s close family and close friends, who CAN ‘think like the patient’. This implies, that often the people best-placed to actually make best-interests decisions, are family and friends, and not the professionals.

Secondly, although professionally-authored MCA guidance almost invariably wants to identify a decision-maker in advance of the time the decision actually needs to be made, if you instead adopt a more ‘holistic’ approach then you need not identify a decision maker. Instead, you could simply adequately inform everyone who satisfies my test ‘of being able to think like the patient’ of the overall situation, and ask all of those people ‘what is your best-interests decision ?’. If they all arrive at the same decision independently, then that seems to be the best decision [and you reached it, without specifying a decision-maker].

Doing that – involving everyone – surely fits with the second of my two statements:

‘Whoever is making a BI decision, should be starting from the position of ‘how could I arrive at a better BI decision ?’’

I will include the links to some of my BMJ pieces where I ‘dig into’ the MCA and a few other related issues, but before doing that, there are a few ‘single issue’ things I have written about on BMJ.

One – not, so far as I can work out, at all well-received by doctors – is that you cannot reconcile Informed Consent with ‘duty of care’:


If you read the MCA without also thinking about the reality of working life for doctors and nurses, then in my view ‘it largely ‘hangs together’’. My ‘ask everyone who can think like the patient’ position, certainly fits the ‘concept’ of section 4 of the Act – but, as I’ve written:


‘There is a fundamental difference, it seems to me, between working clinicians on one hand, and patients and families on the other hand, around CPR decision-making.
Patients are all individuals within a clinical situation, and the family and friends understand the patient as an ‘individual person’ [something the clinicians rarely do] while the clinicians understand the clinical situation [but the patient and the laymen ‘close to the patient’ rarely do]. How much of this is down to ‘the operational difficulties of discussions around death’ I am unsure about, but it does seem that clinicians are ‘most relaxed’ when it seems almost certain that attempted CPR would fail, whereas I believe that family and friends are often ‘most reconciled to’ a refusal of CPR from the patient [irrespective, to an extent, of clinical predictions about the probable ‘success’ of attempted CPR].
The situation is even worse, if the patient has lost mental capacity: because ‘not really knowing the patient’ does of course mean that clinicians are unsure about which individuals do ‘really know the patient’ [and the Mental Capacity Act’s section 4, does not mention ‘next-of-kin’ – the thing clinicians can easily discover, this ‘next-of-kin’ concept, is not appropriate for MCA best-interests decision-making]. Which is another way of saying, that clinicians seem to see potential conflicts between ‘patient confidentiality’ and the logical requirements imposed by section 4(6) of the Mental Capacity Act, rather differently from how I would view that, if I were a welfare attorney (with powers over life-sustaining treatments) considering whether DNACPR was ‘in the patient’s best interests’.’

Most of my own analysis of the MCA can be found either in these pieces, or in the other pieces these pieces reference:


You can find my e-mail address in at least one of those BMJ pieces - I'm always happy to argue the toss over MCA/EoL, so if anybody wants to do that, feel free to e-mail me: as David wrote in his piece 'The Mental Capacity Act has helped start some conversations about advance-decisions and welfare attorneys'. Although the MCA established in law ADRTs and attorneys - the conversation we need, is about what the MCA states [not in any sense of 'is the MCA wrong in what it states the law to be' but in the sense of 'are people misinterpreting the MCA'].


Comment date
27 July 2016
This blog provides useful information about new techniques and concepts.very impressive lines are given which is very attractive.

Bruce Potter

Comment date
27 July 2016
A really thoughtful and balanced blog - thank you. I agree it is not all about the "where" of palliative care or even the "who". However both factors influence strongly the "when" and "how" and who really supports those crucial end stage decisions and how much the patient and family feel they have a real voice at those critical decision points. It is absolutely not that home/hospice is good and hospital is bad, but it can be a bigger challenge for a hospital to create the space (time and environment) for calm discussion about those absolutely key decisions That space also allows those real experts you rightly highlight, the critical compassionate counsellors and clinicians to encourage patients and family to discuss the oh so difficult treatment options.

The other comment is that if you are looking at home settings for this care there is a critical need for integrated care across FNC home care, community nursing, GPs OOO, specialist palliative support (often charitable skills). These models exist and they work, but they have to be built on mutual trust (more than complex contracts) and of course it could be much easier if there were integrated common care records

Dirk Van der W…

Emergency Medical Technician,
Dubai Autodrome
Comment date
21 July 2016
Since I do not live in the UK, have never been there, but is always monitoring the main economies, social outcomes always looking for ideas how social problems can be addressed in times of financial difficulties, I was looking at the British NHS, dilemmas with regards to shortage of skills and the different attempts to bring about change, for the UK government this should be a priority, was wondering if Brexit would solve it, because after all more funds will be available for NHS.
As I am a South African, we currently face exact same problems with our NHS, Aged care from the social welfare system is a hazard, due to corruption, mismanagement, lack of available nursing staff. Those people that can afford better Aged care is scarce nowadays, Private medical care is so expensive that its up most people's retirement savings to an extend that they have to rely on government welfare in order to survive. For the past two years i was looking at ideas of aged care, frail care where the care facilities can be self sufficient with a dedicated clinic, considering the inflation rates, and other influences, that such care facilities can exist when traditional medicine is combined with alternative medicine. At the end we all have to age and some of us may end up in such a situation where we may have to rely on such care.

Lindsey wilkinson

United Lincolnshire hospital trust
Comment date
20 July 2016
Great blog discussing an area that needs improving. The care home liaison team is aiming to do just this for our care home residents in Lincoln. Through completing comprehensive geriatric assessments and identifying residents who are in their last year of life we are able to have discussions with residents and their familys and put in place future care plans. We are an MDT of nurses an OT , physiotherapist and consultant in older people's care. Our team provide staff training on end of life care together with family support. We are also able to assess pain, assess positioning, assess eating and drinking and promote physical activity at end of life of life. We feel we are working well to improve end of life care for our frail older residents and just hope our service is commissioned and roled out further!

George Coxon

Various inc care home owner,
Various inc Summercourt & Pottles Court CHs
Comment date
19 July 2016
At our residents and guests meeting tonight at Pottles we, as usual, talked about life planning, keeping fit and active and longer term health. We speak carefully and honestly about 'getting it right' as the guidance document sets out . Our wider work with other local care homes and our recently CQC 'Outstanding' rated hospice, Hospiscare based in Exeter includes carrying out peer reviews which will include overseeing from one of the senior palliative care consultants at Hospiscare. CQC themselves have issued further guidance in its recent 'A Different Ending' which we know will need to be used as a reference tool to refer to when care homes are inspected. The critical theme we agreed about again at our meeting tonight was working in partnership with primary and community care and our specialist palliative colleagues to prevent our folk experiencing admissions to hospital at the end of their lives (we try hard to avoid admissions pretty much all the time in truth).
Figures do vary but overall care homes provide EoLC to more than 1:5 people-we say Summercourt and Pottles Court are "homes from home for life" to achieve this we need to share the risk, be more tolerant and understanding about the changing demographic of those coming to care homes much later with frailty, complexity, multiple comorbidities and dementia. Access to respectful, trusted and understanding specialists is vital to prevent care home residents being sent off to hospital once their health deteriorates for fear of being blamed via safeguarding for what can become a perilous and isolated state as we care for people during their last days and weeks.
It's never easy to seek sympathy as a care home owner when faced with the huge volume of adverse media attention and stories of shortcomings and when we get it wrong but the facts are that we are proud, we care deeply & genuinely and good homes totally pull out all the stops to get this right as was said during my period as a senior NHS commissioner ' "there is nothing more important to get right than EoLC". I think many would agree. Thanks as ever David. Great blog. Check Pottles blogs for more on our philosophy too maybe


patient experience, bereaved Mum, singer/gardener/writer,
Lead Champion HeadSmart & Advocate Together for short Lives & Teenage cancer Trust
Comment date
18 July 2016
Great blog! Desperate need to collect info on patient experience for children & young people and research into their needs EOL.
Was so shocked at end of draft for consultation from NICE last week, pp37-9: "no studies have tried to understand psychological difficulties..."; "there is no evidence on what type of protocol would be useful to staff or would improve rapid transfer services"; on Pref Pl of death "no research has been done to identify these factors"; "no evidence was identified on how to provide safe and effective breakthrough analgesia"; "Healthcare professionals are often asked to estimate how close a child or YP may be to death. There is very little evidence on which to base..". Shocking. Don't even know how many children & YP have life-shortening/threatening illnesses - estimate 50,000 but Together for Short Lives think that could be underestimated by as much as 25%.
Crazy thing is our family has evidence on all these areas but no one is collecting it. Managed a good death in home setting for a teen with brain cancer - dementia & pain all managed all with community backup and excellent MDT at hospital.

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