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MPs report on end of life care

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24th March 2015

The Commons Health Select Committee report on end of life care was welcomed - cautiously

MPs report on end of life care

In a report published this month, 'the Health Select Committee looks at the state of end of life care since the independent Review of the Liverpool Care Pathway, chaired by Baroness Neuberger, and found great variation in quality and practice across both acute and community settings. It makes a number of recommendations for improvement, and in particular recommends that social care should be free at the end of life.'

The report's prominent themes are awareness, responsibility and - most importantly - training, notably with regard to care planning and models of care. This was a major defect in the application of the troubled and now largely defunct Liverpool Care Pathway. Notable among the MPs' conclusions were that:

  • ... in light of the variation in practice the Committee also recommends that a senior named person in each NHS Trust is given responsibility for monitoring how end of life care is being delivered within their organisation
  • Round-the-clock access to specialist palliative care in acute and community settings would greatly improve the way that people with life-limiting conditions and their families and carers are treated, especially if there were opportunities to share their expertise with other clinicians. Crucially this expertise should be more equitably available to people with a non-cancer diagnosis, older people and those with dementia, for whom early identification and sensitive discussion and documentation of their wishes is also important

Likely to prove more controversial and in need of particularly delicate consideration are the observations that:

  • The situation on end of life care is unlikely to improve unless clinicians feel confident to identify people who may be near the end of life and to start conversations with their patients about their wishes. Too often, however, staff feel that they lack the confidence, skills and training needed to raise end of life issues with patients, let alone understanding the mechanisms available to patients and carers under the Mental Capacity Act 2005 which allow people to make their wishes clear. The Committee recommends that all staff who provide palliative and end of life care to people with life limiting conditions should receive training in advance care planning, including the different models and forms that are available and their legal status
  • Sustainable, long term funding for the hospice sector also needs to be addressed as part of the Government's response to the Palliative Care Funding Review, as does full recognition of the importance of the voluntary sector

MPs sensibly suggest that the use of Electronic Care Planning, previously endorsed by Care Not Killing, would make 'it easier to document and share people's wishes and care records between providers and also reduces the risk of an unwanted admission to hospital or failure to act on advance decisions to refuse treatment'. We now look forward (especially) to how the Government responds to the observed 'shortfall in community nurses and specialist outreach palliative care' and the call for 'further research into measuring the quality of end of life care and the priorities that matter most to people with terminal illnesses, their families and carers'.

The Chair of the Committee, Dr Sarah Wollaston MP, said:

'The care that people receive at the end of their lives has a profound impact not only upon them but also upon their families and carers. At the most difficult of times, their experience will be made worse if they encounter poor communication and planning or inadequate professional expertise.

'There are unacceptable levels of variation in the care that people receive and this needs to be addressed so that high quality end of life care is available to everyone regardless of their age, medical condition or where they live. We must make sure that specialist palliative care expertise is accessible within hospitals and community settings as well as within our hospices.'

Dr Jane Collins, Chief Executive of Marie Curie, said:

'The report highlights what we already know about the reality of services for people living with a terminal illness and their carers across the UK - that there are huge variations in access to and that quality of community services depending on where people live and what their diagnosis is. New research conducted by Ipsos Mori for Marie Curie has found that 7 out of 10 carers say that people with a terminal illness do not get all the care and support they need. We don't think that is good enough.'

Steve Ford, Parkinson's UK chief executive, gave a cautious welcome to the report:

'Although we welcome the report, particularly the recommendation of free end of life social care, the system as it stands is culturally in the dark ages in its capacity to assess anyone who doesn't have cancer as being at the end of their life.

'Huge numbers of people with Parkinson's lie unidentified as being at the end of their lives, so wouldn't have access to this support.

'These recommendations are not going to have an impact unless there is a seismic cultural shift among clinicians, which has to be led by NHS England, to initiate conversations about this difficult and sensitive issue.

'Only then will people with Parkinson's get the funding and support they need so they can die with dignity where they choose.'

And Dr Tony Cole, chairman of CNK member organisation the Medical Ethics Alliance, also highlighted areas of continuing concern:

'There have always been difficulties in predicting imminent death and it is not possible to predict that death will take place within a year.

'My own wife was given a prognosis of three months to three years and lived for 20. Current research still shows that there is a 30 per cent major discrepancy between causes of death, as certified, and post mortem findings. Furthermore, a patient at the end of life may also have a treatable condition which could be relieved such as a bleed or obstructed breathing. People making their own end of life plan may not have foreseen this.'

Read the Commons Health Select Committee Report on End of Life Care in full (HTML / PDF)

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