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End-of-life care patients forced to choose between home and pain relief


Many people are having to make “unacceptable trade-offs” between passing away in their own home and receiving pain-free care at the end of their life, a report has warned.

The report for the charity Sue Ryder, titled “A Time and a Place”, suggests that too many people are willing to go without pain relief in order to die at home with their family around them.

The study, carried out by the Demos think-tank, discovered that 62% of the participants want to die in their own homes and 78% said managing pain is important, but just over a quarter (27%) believe they can actually be free from pain at home.

The statistics indicate that many people are compromising and not making positive decisions about how they will spend the end of their lives. They also suggest that people are less worried about medical concerns than they are about their personal and environmental wishes.

Although pain relief was the top priority, 71% of the respondents said being surrounded by family and friends is important and just over a half (53%) are in search of a private and dignified death. Being able to pass away in a familiar location and in a peaceful manner is significant for 45% of those surveyed.

The findings have prompted Sue Ryder to call on the government and the NHS to make sure everyone’s care needs are met as they near the end of their lives. It wants reforms for more flexible and varied care and support in people’s homes and help for families who are looking after them.

The charity also wants to see better communication and health care planning, with training for health professionals and local councils to make sure people are presented with choices for the end of their life.

Sue Ryder is concerned that dying at home does not always ensure “a good death”, according to its chief executive Paul Woodward.

He said it is important to consider how people wish to pass away and not just where. It is important to find out what people want to make sure they are provided with the best support, he said.

Janet Davies, executive director of nursing and service delivery at the Royal College of Nursing, said: “This survey raises considerable concern, but sadly it is not surprising.

“Too often, people are not able to access expert advice, care and pain relief, and it is particularly distressing that many people who are dying are brought into hospital out of hours and against their wishes.”

She added: “Only by ensuring that there is a fully trained nursing service available in the community around the clock can we ensure that all patients receive the high quality care associated with that in hospices in their own homes.”

Simon Chapman, director of public and parliamentary engagement at the National Council for Palliative Care, said: “This is further and powerful evidence showing that whilst the majority of us want to die at home we cannot be confident that we will get the right pain relief and round the clock access to care and support.

“This report should be an alarm call to the new clinical commissioning groups and policymakers that they need urgently to redesign services so people at the end of their days can get the support they need, wherever they have chosen to be cared for and die,” he said.


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Readers' comments (15)

  • Why cant GP and District Nurse along with Mckmillans deal with pain? My local Hospice palliative care tean will always assist on advicing on symptom control, both in the community and Care Homes. Pain relief is perhaps the simplest symptom to cntroll-side effects from disease and from morphia need specialist help. I think all nurses should be trained in palliative care and GP's have an advanced course on the same. Home deaths are natural the best, if care is available

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  • michael stone

    There should be adequate pain relief at home, but I have seen at least 2 reports of inadequate pain relief being provided to near-death patients, because DN teams 'were not answering their phone' (I see pain relief near death as being so important, that if DNs and normal OOH services can't get it right, I think 999 paramedics should be called and set up the necessary pain relief). See the rapid response by Stephen Head to a recent BMJ piece, where he points out that you should not be trying to duplicate the approach which works in hospices at home (and he is right):

    However, if pain relief is different, the choice still rests with the patient: but it should not be necessary to decide to stay at home, and often to then not be able to get adequate pain relief.

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  • michael stone

    This was reported in the Mail on May 6th, in a piece about the failings of the new 111 service - however, it simply isn't good enough that pain releif can be left to GP/DN OOH services, and for them to then 'not answer the phone' :

    Kim Green was trying to get a nurse to administer pain relief to her 53year-old husband Jonothan, who was dying of prostate cancer.

    She said she was on the phone to a female call centre worker for nearly an hour, but the employee was apparently unable to summon any of the local district nurses as they were not answering their phones.

    Mrs Green, 36, who has two sons, said: `The horrible thing is, I should have been sitting next to him holding his hand, reassuring him help was on the way, and I couldn't because I was on the phone frantically trying to get somebody to help him.
    `It was absolutely awful. I don't know whether that made his anxiety levels worse or not, but it certainly didn't help him.'

    By chance, Mrs Green spotted a district nurse going to a nearby care home for adults with learning disabilities. She ran into the street and was able to persuade the nurse to administer the medication to her husband.

    He died hours later last Wednesday at his home in Aylesbury, Buckinghamshire.

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  • tinkerbell

    disgusting, what kind of society will we become? Some GP's, thankfully only a minority query the cost of a pain patch with the residential homes i visit. Cruel, metallic hearts who shouldn't be in the so called 'caring' profession.

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  • A Nonny Mouse

    Community Palliative Care, District Nurses and GPs must be given adequate funding and staff to take on the responsibility of ensuring patients are kept comfortable if they wish to die at home, anything less is deplorable and totally unacceptable. Patients discharged from hospital must be sent home with 'anticipatory medication' and any equipment necessary to make their final days as peaceful as possible.
    Cost should not be a factor, there must be investment in community services.

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  • With every sympathy to the family concerned, as a former district nurse I would like some more information about the situation in which nurses were said not to be answering their phones before making assumptions about their level of caring or their professionalism. Rather than the implied criticism, maybe we should consider that they were perhaps in the house of another patient, spending time delivering complex care, and obviously it is not appropriate or possible to answer phone calls about other patients at that time. They may have been driving and unable to answer immediately, or about to administer a drug which had to be given at a certain time. There might have been no mobile signal. There would also have been unlikely to have been enough staff on duty to avoid having to deal with several equally urgent priorities. Pain relief or haemorrhaging patient? Three palliative patients and only one nurse? This is the reality and we really need to stop automatically blaming nurses when timely care is simply not possible due to the lack of resources.

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  • Patients have every right to remain in their own homes if that is their choice and with adequate medical and nursing care and socical support.

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  • tinkerbell

    Anonymous | 9-Jul-2013 9:37 pm It was not my intention for any nursing service to feel criticised, so please don't get me wrong.

    She added: “Only by ensuring that there is a fully trained nursing service available in the community around the clock can we ensure that all patients receive the high quality care associated with that in hospices in their own homes'

    this is what needs to be made available, I am NO WAY blaming nurses for this shortfall situation. As is always the case, give us the tools and we'll do the job, but if this service is not available due to lack of staffing being able to provide pain relief to those in their homes then we need to ensure investment is made in this area and this matter is addressed.

    Very sadly I don't think under the current climate and cuts this will happen, because all we have is a lot of political posturing and
    no action or investment.

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  • I've a feeling that we are seeing a selective section of the survey to put across a certain point. I also have a feeling that questions about did you speak to a Macmillan nurse , discuss pain releif with your D/N or GP were not asked

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  • michael stone

    Anonymous | 9-Jul-2013 9:37 pm

    '(I see pain relief near death as being so important, that if DNs and normal OOH services can't get it right, I think 999 paramedics should be called and set up the necessary pain relief).' From my post 2nd in the chain.

    The reasons the OOH team were not answering their calls is one question, the consequences are another: as I said before, the 999 Services should be utilised to fill in any gaps for this, irrespective of why the problem arose. Look at this from the perspective of Jonothan and Kim, FIRST. Remember 'patient-centred' ? (there is an 'oddity' in there, because it seems the pain relief was at the home, but Kim wasn't able to 'use it' - but that fits in with Stephen's comments, below).

    The memory of inadequate pain relief stays with the relatives for ever.

    As Stephen Head wrote:

    'With the best will, especially in more rural areas, delays in meeting the needs of the dying are inevitable, given the current resource envelope. I am saddened by much feedback on delays in these people being seen and the distress to the patient and harrowing experience for their loved ones ... Perhaps an area for further development should be new therapeutic models. Most prescribing in Terminal Care has been determined by good practice in a hospice setting : the Syringe Driver seems to reign supreme. The difference is of course there is always a nurse there to sort problems. We need to look at innovative ways of doing pharmacology for end of life care. This may be instead of or besides drugs only managed by health professionals ... Other possibilities include self-administered analgesia (well recognised in post-operative care); perhaps with a auto injector device the patient or carer can use. There is a whole new research and development agenda here - not about taking hospice practice into the community but developing services that are user friendly solutions that can work better in the homely environment.'

    It is a general problem, in my opinion, that beliefs and behaviours which are applied to patients in thier own homes, seem to 'bleed out from hospitals/hospices' which are 'staff-led' enviroments: at home, behaviour should be patient and relative led, and you need an entirely different 'way of thinking'.

    tinkerbell | 9-Jul-2013 3:41 pm

    A Nonny Mouse | 9-Jul-2013 9:27 pm

    I agree with both of you (obviously !).

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