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Cancer charity issues warning over future of end of life care

  • 25 Comments

End of life care will be placed under “an intolerable strain” in coming years, according to a new analysis by Macmillan Cancer Support.

By 2020, nearly 144,000 people a year in England will die of cancer – the equivalent of one person dying from the disease every four minutes, the charity has estimated.

“If nothing is done… then end of life care is heading for a meltdown”

Lynda Thomas

Overall, there will be 15,000 more cancer deaths than in 2010, according to its calculations.

Calling for more investment in community services, Macmillan said the figures highlighted an urgent need to tackle the country’s “deeply imperfect” approach to end of life care.

Previous research by the charity found most people with cancer – 73% – would prefer to die at home, yet official data showed only 30% are able to do so.

An independent review of choice in end of life care that was commissioned by ministers and published last year made a raft of recommendations, including the need to expand out-of-hours community services.

The government has yet to respond to the recommendations, but Macmillan said they should be funded in full.

It estimated that if no action was taken then nearly 65,000 people dying of cancer over the next five years would experience poor overall care in their last three months.

Lynda Thomas

Lynda Thomas

Lynda Thomas

“It is shocking to think that one person will die of cancer every four minutes, but worse still that many people dying of cancer may not get the care they need, and that their final wishes will remain unfulfilled,” said Lynda Thomas, chief executive of Macmillan Cancer Support.

“It is unacceptable for a person dying of cancer to have to go to hospital when they don’t want to be there, because care and support wasn’t available at home,” she said.

She added: “If the government really wants to improve end of life care for everybody, then investment is vital. If nothing is done and the country’s deeply imperfect arrangements continue, then end of life care is heading for a meltdown.”

The Royal College of Nursing said palliative care had made huge strides in recent years, but warned that such advances were under threat.

“For many people with cancer, as well as other conditions, ‘a good death’ is possible, but it requires resources, particularly for district and community nursing teams,” said Amanda Cheesley, RCN professional lead for long term conditions and end of life care.

“Death can be hard to predict and it can come at any hour of the day or night – which is why care needs to be available at all times to all who may need it,” she said.

“It’s also something we need to be much better at talking about otherwise underfunding and pressures will mean more dying people in hospital against their wishes,” said Ms Cheesley.

Amanda Cheesley

Amanda Cheesley

Amanda Cheesley

She called on the government and the NHS to “work together to fund the system and ensure that does not happen”.

Simon Chapman, director of policy and external affairs for the National Council for Palliative Care, said Macmillan’s warning of a looming crisis was “a serious concern for us all”.

“We repeat the call for the government to implement all the recommendations of the choices review as a matter of urgency,” he said.

“This must include making sure that access to palliative and end of life care is properly funded for everybody, regardless of their diagnosis, throughout the country,” he added.

The council has previously warned of potential shortage of specialist nurses. The latest edition of its workforce report is due out later this month.

Scott Sinclair, head of policy and public affairs, fellow charity Marie Curie, said: “Time is ticking. The government needs to commit to investing in palliative care services now to address the unacceptable variation in care and to cope with the unprecedented demand in the future.”

  • 25 Comments

Readers' comments (25)

  • michael stone

    End of life care is far from perfect - and this is even more true for deaths from causes other than cancer.

    Improvement requires better service provision, and better behaviour for 'other aspects of EoL': and probably more money spent in the community:

    I have just commented about this to a Marie Curie article, and I need not repeat my comment here:

    https://www.mariecurie.org.uk/blog/voices-survey/137243

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  • As usual the role of Nursing Homes has been practically ignored, most relatives actually choose Nursing Homes (staffed with Nurses) over Hospitals ,Hospices and Care Homes (with no Nurses) any day they are given the choice, recently with the change in criteriors imposed by Non medical staff this choice has been considerably erroded.

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  • michael stone

    Anonymous 27 April, 2016 6:45 pm

    I think - from memory - that most patients say they would prefer to die at home [at least, if you ask them in advance of 'the last few days of life'].

    Hospices seem to come out quite well, in terms of feedback - and I believe that many hospices are 'free': is that true of nursing homes ?

    I certainly wouldn't want a loved-one of mine to be 'nursed' anywhere that did not have nurses - although, really it is the patient's opinion which counts, surely.

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  • My understanding is that government has already reached the situation where there will not be enough care homes remaining by 2020 to cope with the growing elderly population.

    Now the latest policy to be launched is that people are to die at home. Who said we all want to die at home?? It would be cheaper of course and it would do away with bed blocking, but goodness help all those who are forced to undergo or witness the neglect that will inevitably occur, should they then complain about it and suffer the usual character assassination by bad management.

    Personally I would prefer to spend my last 3 weeks in a hospice. Prior to that, to avoid the loneliness that arrives when one's elderly friends die or lose the mobility to socialise, I would prefer to live in a GOOD care home once I become immobile. But, and it's a very big BUT, I don't believe that there are many- though there are lots of homes which suck up to relatives instead of spending time and energy caring for their patients. So, choosing between a poor home and my own, then and only then would I choose my own home at that point. If one is likely to die of sepsis for example, as almost 37,000 people do each year, one may as well be neglected in one's own home and die faster.

    Michael The Department of Health produce info on who pays when. You may find The National Framework for Continuing Healthcare of interest. There are 3 forms of payment in England:-

    1. Residential care which you pay yourself above a certain level of assets/savings at approximately £24,000

    2. Nursing funded care which some CCGs unlawfully withhold

    and,

    3. Continuing Healthcare (CHC) which the NHS pays in full, if about 12 criteria are met. These criteria do not correlate to specific illnesses but to the care provision needed to best manage health problems resulting from any illnesses e.g. instability and unpredictability. Chances are you need a lawyer to actually get CHC! though why should people retain all their savings for their children to inherit, just because they need more care? .. maybe the underlying idea was to avoid the creation of good care for the rich and bad care for the poor and the easiest way is to say if you need healthcare for primary health needs as defined in the CHC checklist, then it comes free.

    If health and social care is to join should this not change?





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  • michael stone

    Anonymous 28 April, 2016 5:32 pm

    I can't disagree with most of your post, but so far as I know the policy is NOT 'that people should die in their own homes' - the policy is that 'people should be enabled to die in their own homes, IF THEY WANT TO'.

    If I discover that it has changed to 'people should die at home' I'll be sending a very terse e-mail to Bee Wee (and various others connected to EoL).

    Of course, you are correct to point out that if you would prefer to die in a nursing home but it would cost far more than you could afford, and nobody else will pay for it, then that isn't an option for you. And, you would be right to suggest that caring for the 'very frail elderly or the elderly with complex longer-term nursing needs' costs quite a lot, and that 'quite a lot' is more than either goverment or councils seem willing to pay.

    But if you show me where 'Now the latest policy to be launched is that people are to die at home' comes from, I'll be sending 'a very angry e-mail' to whoever is pushing that policy.

    There was a piece in BMJ about 'preferred place of death' and the series of rapid responses to it makes it interesting reading:

    http://www.bmj.com/content/351/bmj.h4855/rapid-responses

    The article itself is subscription [so you can only read its beginning] but as is often the case, the responses to the paper make very interesting and informative reading.

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  • I have to back Michael up here. For a healthy adult debate it is worth considering the opinions of others. While nursing homes provide valuable care, the same can be said for hospices, hospitals and services within the community who provide care at end of life to the best of their ability. If you look at the Gold Standard Framework you will see that the aim is to provide end of life care to all people in line with their preferences and to die well in the place and manner of their choosing. I agree that many patients choose to die at home but an increase in available services is required as they are not as accessible as they should be.

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  • michael stone

    I can knock this 'people are now expected to die at home' one on the head.

    I happened to be about to send an e-mail to three people, one of whom was Bee Wee, who is NHS England's lead for end-of-life. I modified my e-mail by adding a forenote, and sent this today at 13:24:

    QUICK QUESTION for Bee:

    A nurse has just commented on the Nursing Times website ‘Now the latest policy to be launched is that people are to die at home’.

    I assume, that is NOT ‘the latest policy’ ?

    I responded with a comment starting:

    ‘I can't disagree with most of your post, but so far as I know the policy is NOT 'that people should die in their own homes' - the policy is that 'people should be enabled to die in their own homes, IF THEY WANT TO'.

    If I discover that it has changed to 'people should die at home' I'll be sending a very terse e-mail to Bee Wee (and various others connected to EoL). ‘

    Bee got back to me at 14:09

    Mike – no need to send me a terse email! I can absolutely assure you that there is not a ‘latest policy’ about ‘people are to die at home’. You are quite right – we want to support people to be able to die in their own homes if that is what they want to, recognising that not everybody wishes to, or is able to, for a variety of reasons.

    So ANONYMOUS 29 APRIL, 2016 2:17 PM has got the 'policy' spot-on - it is try and do what the patient wants.

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  • John Major said re increasing VAT "I have no plans to increase VAT." Then what happened Michael?

    Policy and outcomes are two completely different things.

    PLEASE NOTE Michael. I did not suggest this care costs quite a lot. After an initial outlay (Buurtzorg Healthcare model) it is cheaper to provide person centred care than it is to provide bad management. chronic staff retention problems, health loss to whistleblowers with associated litigation costs and deterioration of health in impotent observers and, of course, harm to patients. But this and other governments want voted in again and so want taxes kept down or lowered. So they indulge in short termism instead of humane long term approaches. They can get away with this as long as voters fail to understand the difference between policies and outcomes.

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  • As Bee Wee is reported to have stated "..we want to support people to be able to die in their own homes if that is what they want to, recognising that not everyone wishes to, or is able to, for a variety of reasons."

    If there are to be too few care home places to meet needs by 2020 then "for a variety of reasons" people won't have a real choice, will they?

    Watch that back door.

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  • Can Bee Wee or anyone else supply robust data re how many and who wants to stay in their own homes at EoL or is this just wishful thinking from the government?

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