More Care Less Pathway: End of life care after Neuberger

Dr. Martin Vernon is a Consultant Geriatrician in South Manchester and is the BGS End of Life Care Lead.LCP

Few can have escaped the media driven political debate that erupted in 2012 over the care of dying people in hospital and at home but you may be wondering what has happened since then.  In July 2013, the Independent Review of the Liverpool Care Pathway published the report More Care, Less Pathway. In response to its recommendation for a system-wide strategic approach, the Leadership Alliance for the Care of Dying People (LACDP) was established to provide a focus for improving care of dying people and their families.  You can learn more about the group here.

A Clinical Advisory Group (CAG) was established in September 2013 to consider Review recommendations specific to clinical practice and how these should influence practice. Dr Bee Wee, National Clinical Director for End of Life Care, chairs the group.  The British Geriatrics Society is represented by me and the group includes representatives from NHS England, Royal College of Physicians, palliative care professionals, hospice and care home organisations, the Care Quality Commission, and a layperson.

An engagement document has been developed, relating to recommendations, specifically about clinical practice.  It includes the recommendation that the LCP should be replaced within the next six to twelve months by an individualized end of life care plan for each patient.  During October and November a series of workshops have taken place across England to collect feedback on this document, which sets out proposed guiding principles and outcomes.

Good end of life care is essential to the practice of geriatric medicine. Over the last decade many of us have adopted tools, of which the Liverpool Care Pathway (LCP) is one, originally developed for the care of dying people with cancer, or other conditions with a discrete diagnosis and relatively straightforward prognosis.  While intuitively sensible, it was perhaps inevitable that the adoption of a ‘pathway’ approach to end of life care for older people with complexity and uncertain prognosis would lead us into unchartered clinical and political waters.

In 2012 examples of alleged poor practice, which was linked to pathway-driven end of life care for vulnerable older people in hospital, caught media attention.  This sparked an intense and, at times hostile, media debate. This continues.  The BGS sought to balance the debate, drawing attention to many positive aspects of structured end of life care for vulnerable older people. We emphasised that geriatricians had much to contribute to end of life care and the training of others in addressing complexity in acute and long-term care settings.

A number of key themes emerged from the debate.  We have a culture of medicalised death in the UK. Diagnostic and prognostic uncertainties surrounding older people presenting with frailty, delirium and dementia pose considerable difficulty to urgent care systems.  Acute crisis can lead to hospitalisation, with a prolonged hospital stay and a medicalised end of life for which all parties, including the patient and their family, are unprepared.

It is hard to envisage cultural change in the absence of robust infrastructure, which identifies people nearing the end of their lives, and shares this information with both the patient and those involved in present and future care.  Advance care planning for older people is not yet universally embedded in UK health and social care practice. Perhaps, as a result, there has been inadequate investment to equip multi-professional groups to engage older people and their families in discussions that plan for care at the end of life.

End of life care in hospital, though at times unavoidable, has unfortunately become a default for some older people who would have wished for something different had that been made available to them.  The debate about the Liverpool Care Pathway is therefore symptomatic of a wider problem in the UK health and social care system which is presently ill equipped to address the complexities of end of life care for a growing population of older people with multiple long term conditions and/or frailty.

A system-wide response to the Review is expected in the early 2014. The current engagement process is testing proposals with a wider group of patients, families, service users and professionals. Individuals and organisations are invited to respond by submitting written responses to the questions posed here by 6th January 2014.

Please do get involved and make your views known.  Alternatively contact me directly through the BGS office or mail me directly martin.vernon@uhsm.nhs.uk.

2 thoughts on “More Care Less Pathway: End of life care after Neuberger

  1. Pingback: More Care Less Pathway: End of life care after Neuberger | British Geriatrics Society | All Things Palliative - Article Feed

  2. I have just sent an email to Martin, but I would like to post something here, extracted from something I wrote recently:

    My interest is in EoL, with an emphasis on EoL (known ‘final year of life’
    defined tightly, although there is ‘creep’ beyond that tight definition: there is no
    ‘creep’ towards tightening however, so I am considering many more patients
    than ‘expected death’ patients) when the patient is at home: especially when
    previously mentally-capable patients, express a decision to a live-with relative,
    and then for some reason become mentally incapable before that decision
    has been disseminated, further discussed, etc. I want to explore two main
    issues, which can be stated as:

    1) Are lay carers and professional carers to be regarded as identical in every
    respect except for technical ones: i.e. while things such as clinical expertise
    are treated by ‘belief and behaviour sets’ as differing from professional to
    professional, and from lay to professional, are things such as ‘honesty’ and
    ‘integrity’ to be assumed as present within both lay and professional carers,
    until proven otherwise ?

    2) Does the duty to act in best interests (section 4 of the MCA) apply to the
    actions of a live-with relative, while the patient and the relative are alone ?

    There is a further related issue, of whether [duty to follow] the MCA can
    reasonably be applied to the 999 Services (or to anyone not involved within
    the ‘ongoing patient care’ for an extended period) or not ? And, if the answer
    is ‘not’ as it seems it must be, how is the duty of the live-with relatives to avoid
    potential liability under the MCA (i.e. to place themselves in a position to be
    able to claim compliance with section 4(9)) to be reconciled with the absence
    of a similar duty on 999 Services, if we are trying to achieve coherent and
    joined-up behaviour ?

    However, in my opinion understanding of the MCA is fairly abysmal amongst
    many more junior HCPs, and probably almost entirely absent among front-line
    police officers (I’ve asked a couple – they only know about the section of the
    MHA under which they can detain people for their own safety. The intriguing
    ‘If we got involved with that {the MCA} we would look it up on the internet’,
    came from one officer).

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