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Cancer charity makes plea over end-of-life care

Almost three-quarters of cancer patients in England who die in hospital beds would prefer to die at home, figures suggest.

This is the equivalent of 36,000 cancer patients every year, the estimated data from Macmillan Cancer Support showed.

It comes as the charity launched a new report setting out recommendations for improving choice at the end of life.

It is also calling on the government to make social care free for everyone in their last weeks.

The 2012 National Bereavement Survey from the Office for National Statistics (ONS) showed relatives and carers of cancer patients who died thought care in hospitals was often sub-par to care received at home.

Some 63% of those whose loved one died at home rated the overall quality of care received as excellent or outstanding, compared to only 37% of those whose loved one died in hospital.

And 41% of people with terminal cancer were not always treated with dignity and respect by hospital doctors, the survey found.

Macmillan said too many people are still spending their last hours and days on hospital wards, two years after the Palliative Care Funding Review (PCFR) recommended free social care for those at the end of life.

Ciaran Devane, chief executive of Macmillan Cancer Support, said: “As the government makes up its mind about whether to fund and implement free social care at the end of life, thousands of people with terminal cancer are being left to die in hospital beds against their wishes.

“This is putting an unnecessary strain on our A&E departments because people are not getting access to social care for themselves or for their carers which would enable them to be cared for in the comfort of their own home.

“It’s simply not good enough to pay lip service to this issue - we need to see action. If the government wants the NHS to deliver world-class care at the end of life in the UK, it needs to start by giving people a real choice about where they die.”

A Department of Health spokeswoman said: “We are committed to improving and increasing the choice available for patients at the end of their life so they can choose where to spend their last days.

“As part of our work to improve end of life care, the current system for funding palliative care is being reviewed, with the intention to introduce a new system in 2015-16.”

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Readers' comments (12)

  • michael stone

    'It is also calling on the government to make social care free for everyone in their last weeks.'

    I would 100% support that.

    But quite a lot of work remains to be done, before 'dying/death at home' is satisfactory, in various ways (there are many currently badly-handled issues).

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  • Ellen Watters

    It would be great if this happened if the patient and their family wished. Those left behind will get a lot of satisfaction that they carried out their loved ones dying wishes.

    But as Michael says, there is still a lot to be done. In the meantime hospices are places where patients and families are treated holistically and the focus is on quality of life.

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  • michael stone

    Ellen Watters | 28-Oct-2013 2:21 pm

    I tend to agree about hospices - but surely patients and families COULD be 'treated holistically' wherever 'dying' is happening: it is very largely a matter of 'how systems think about dying', and until everyone 'gets that' (from hospitals, through hospitals to home) clinicians and other professionals are not going to be behaving consistently.

    Really it is pretty simple - it just involves stopping lokking at patients as if they can be fully described in terms of their clinical situation, and instead actually asking patients 'Is what we are doing okay for you - what better could we do ?' (or asking family and friends if the patient cannot answer him'herself). In other words, paying much more attention to the patient's own views of his/her own experience of 'dying'.

    It should not be all that hard - but it seems to be very difficult indeed, to achieve this simple 'ask the patient if he's happy with what we are doing' change !

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  • everyone, regardless of their diagnosis or illness, should have free end of life care and be given the choice of where to die. funding for end of life care should not be an issue.

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  • As a community nurse I am constantly frustrated with the lack of care at night for the elderly and terminally ill. Even if people could afford to pay for it, it isn't available. If there are night nurses why aren't there night carers? Marie Curie nurses are oversubscribed to and sometimes families just want to know someone is with them overnight if they can't be. Surely it wouldn't take too much organising.Employ carers who just work nights.

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  • Anonymous | 28-Oct-2013 10:41 pm

    Completely agree. And hospices aren't the sole answer either. In my community, 170 people die a month, from a range of causes, of which cancer is the smallest. Our hospice has 18 beds and we buy 11. More funding needs to be in the community because most people would prefer to die at home and not everyone is "lucky" enough to get a hospice bed.

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  • Everyone should have a choice of where they die and that choice should be respected. If it means more funding for community care, equipment, staff etc. then make that available - if it means opening 'end of life' units in general hospitals then make that happen and don't cut the hospice funding.
    If patients, families and staff were asked the question 'more end of life care funding' or 'more technology funding' what do you think the answer would be?

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  • michael stone

    Just to chip in with a comment, it isn't clear that end-of-life care will be getting as much 'priority' as it was receiving between about 2008 and this March.

    The April reorganisation of the NHS, carried with it the disbanding of Tessa Ing's End-of-Life Care team at the DH, and the Leicester-based team (I think that one was called the National EoL Care Programme team - I'm also not 100% certain it was formally Leicester based) has also now terminated.

    Both of those teams, were starting to publish some quite good material about end-of-life - so far as I can work out, they have NOT been adequately replaced.

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  • Agree with all above! Need holistic, individual care and families can be helped to provide some of that themselves. We do need more palliative nurses and GP's trained in it-not just stuck on morphine-type drugs. ALL symptoms controlled, including side-effects of the necessary drugs. Home deaths are best for everyone, the dying, the family (if well supported) and the NHS

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  • Having worked in multiple end-of-life care settings, I'm reluctant to say that it does raise some concerns.
    Firstly the present community provision is woefully understaffed and equipped to meet the conjectured expectations. The teams work flat out and are some of the most dedicated a caring people I have ever met.
    Secondly, even end-of-life patients can and do develop complications that require acute care intervention. Relatives and community teams sometimes cannot cope.
    But there is also the question of symptom control and pain management. With the welcome dismemberment of the LCP, many healthcare professionals are still in the dark. Particularly when it comes to the use of opiates and benzodiazepine sedatives. A zeitgeist paranoia (this is subjective) seems to have percolated through society that; When the Doctor or Nurse gives the afore mentioned medications to loved ones, then they are accelerating death deliberately?
    Finally, should I chose to die at home I would like the Nurses/Doctors looking after me to medicate me as they saw clinically appropriate. Nothing would terrify me more than being in pain or distress, except Doctors reluctant to prescribe and Nurses scared to give.
    Just my thoughts for now.
    D.

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  • Mike, they have been replaced by domain leads (google them, there are five and EoL care comes under 2, it's on the NHS England website). The person leading on EoL care now is Dr Bee Wee from Oxford Uni hospitals trust.

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  • michael stone

    Anonymous | 2-Nov-2013 0:12 am

    Thanks, I had already identified Bee via an enquiry to Mr Hunt/DH as it happens - they were somewhat over-wide, I suspect, in their description of Bee's role. I'm not sure if bee agrees about that - it is one of the things I'm interested in her answer to.

    I sent a very long PDF to Bee about 3 or perhaps 4 weeks ago, and I will be discussing a few points with her, judging from an e-mail her admin guy sent on Nov 5th. It raises a concept I call The Core Care Team, which I want 'thinking' to be based on (as opposed to using a manner of thinking based around the MDT concept). As it happens, the consultation (the one below) gets very close to my CCT idea, if you also add in an assumption that 'the default position should be to trust/believe live-with relatives', and if you correctly interpret the meaning of section 4 of the Mental Capacity Act, and also understand the point of a written ADRT.

    The consultation about the LCP replacement can be tracked down at:

    http://www.england.nhs.uk/ourwork/qual-clin-lead/lac/

    and it is interesting - there are some very insightful questions at the end of the consultation.

    Also, it isn't a proposal for a replacement for the LCP: the proposal, is more like like something for a system covering the 'quite-ill to death' phase of EoL (personally, I argue for 'diagnosed as terminal through to death).

    You can complete an online consultation form, but it takes some advance reading to do it properly - but the more people contribute, the better, in my opinion.

    PS Claud Regnard told me he doesn't read the MCA itself, but the Code of Practice, because he finds the Act full of jargon and gobbledegook. I'm like that, when I come across words like 'domain leads' !



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