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Priorities for Care

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“Death Pathway still being used…”
One can always rely on a tabloid to present a balanced view on an issue important to patients and carers. this article [1] maintained that the Liverpool Care Pathway (LCP) was a form of abuse, and despite being phased out in 2014, was still being used, but under a different name.

During the decade the LCP was used in the NHS, many ‘horror’ stories were related via public and professional media; patients being put onto the pathway without either their consent or discussion with relatives, patients being denied water, and patients being inappropriately placed onto the pathway [2]. Media stories told of ‘LCP survivors’, or suggested that NHS organisations had received financial bonuses because the pathway had helped them reach targets [3]. The Parliamentary and Health Service Ombudsman’s document ‘Dying Without Dignity’ outlined key areas of poor care, illustrated by real patient examples [4].

About the LCP

The LCP was developed during the late 1990s at the Royal Liverpool University Hospital, in conjunction with the Marie Curie Palliative Care Institute. It was an adapted form of the model used in hospice care, and was adopted by the NHS because studies had shown that end of life care in hospital was patchy, with care, comfort and communication being particularly poor [5]. In particular, patients were being subjected to invasive testing and treatment that would not prevent death and, unnecessary pain and suffering was caused by needlessly prolonging life.

The aim was to ensure a dignified and peaceful death by considering and addressing:

  • The need for further medication/tests/interventions
  • Patient comfort: positioning, mouth care etc
  • Fluid requirements

While doubtless many patients received good care while on the pathway, it was clear that problems were occurring. One could argue that the pathway itself was not the problem, rather the fault of those implementing it inappropriately or interpreting the guidance in a strictly tick-box fashion rather than on an individual basis. The backlash from patients, carers, and increasing pressure put upon the Department of Health led to a review. This was led by Julia Neuberger and the findings were published in the document More Care, Less Pathway [6].

Interestingly, the review panel suggested that amongst other things, the term ‘pathway’ was being misunderstood; some staff treated it as a set of instructions, and to a lay person, it suggests a road leading somewhere. The pathway’ represents a decision by physicians …to kill their dying patients [6].

The review ultimately recommended that the LCP be phased out and replaced with a system-wide end-of-life care plan.

Priorities for Care
In June 2014, a set of guiding principles, Priorities for Care, were launched as a successor to the LCP. These were devised by the Leadership Alliance for the Care of Dying People (LADP) [7], in response to the Neuberger review, and aimed to:
“promote a stronger foundation for good care and a culture of compassion in the NHS and social care…the priorities put people and their families at the centre of decisions about treatment.” [8].

The Priorities aimed to ensure that [7]:

  • The possibility that a person may die within the coming days and hours is recognised and communicated clearly, decisions about care are made in accordance with the person’s needs and wishes, and these are reviewed and revised regularly.
  • Sensitive communication takes place between staff and the person who is dying and those important to them.
  • The dying person, and those identified as important to them, are involved in decisions about treatment and care.
  • The people important to the dying person are listened to and their needs are respected.
  • Care is tailored to the individual and delivered with compassion – with an individual care plan in place. This priority includes the fact that a person must be supported to eat and drink as long as they wish to do so, and their comfort and dignity prioritised.

NICE guidance
Alongside the launch and adoption of Priorities for Care, the Department of Health was continuing to review end-of-life care. Consequently, in July 2015, the National Institute for Health and Care Excellence (NICE) published new draft guidance on Care of the Dying Adult [9]*. This has attempted to address the issues raised in the LCP review and include the principle of the LADP five priotities (Box 1).

Box 1: Main recommendations of the NICE draft guidance- care of the dying adult [9] (NICE 2015)

  • Recognising when a person is in the last days of life
    The recommendations in this section help healthcare professionals recognise when a person might be entering the last days of their life, stabilising, or recovering. They supplement the individual clinical judgement required when making decisions about the certainty of prognosis and how to manage uncertainty.
  • Communication
    The recommendations cover establishing communication needs, discussing prognosis with the patient, family and multidisciplinary team, and appropriate documentation.
  • Shared decision making
    Here, you are required to establish the level of involvement in shared decision the patients wants, develop and individualised plan of care, take into account patients wishes (advanced directives etc), and resources (external or local) required.
  • Maintaining hydration
    It is recommended that: you support the person to drink if they are able, frequent mouth care is given, discuss the benefits of clinically assisted hydration, including the option to stop.
  • Pharmacological interventions
    General recommendations for prescribing for management of common end-of-life symptoms (pain, nausea and vomiting, breathlessness, agitation and secretions) are provided.
  • Anticipatory prescribing
    Assess, discuss with the patient and prescribe any medications that may be required to manage common end-of-life symptoms.

Conclusion
It is 31 years since Mills et al [5] published their review of end-of-life care yet successive approaches and guidance have still failed some patients, leading to a breakdown of confidence between patients and health professionals.

Although it is early days into the consultation on the new guidance, it has been welcomed by some; others however, are expressing concerns [10]. Of course, using such terms as ‘death guidance’ will never inspire confidence. Perhaps NICE should include some guidance for media reporting and support of the initiative…
Time will tell.

If you would like to comment on any of the issues raised by this article, particularly from your own experience or insight, Healthcare-Arena would welcome your views.

 

* The consultation period ends on the 9th September 2015 at 9pm. Information on how to submit you comments can be found at:
http://www.nice.org.uk/guidance/indevelopment/GID-CGWAVE0694/consultation/care-of-the-dying-adult-draft-guideline-consultation

References

  1. Daily Mail. NHS still using Death Pathway despite ‘ban’ with charity warning that controversial end-of-life programme is merely operating under ‘a different name’. Daily Mail Online. 2015. http://www.dailymail.co.uk/news/article-2994291/NHS-using-Death-Pathway-despite-ban-charity-warning-controversial-end-life-programme-merely-operating-different-name.html Accessed August 2015
  2. Donnelly, L. (1 December 2012). “Half of those on Liverpool Care Pathway never told”. The Daily Telegraph (London). http://www.telegraph.co.uk/news/health/news/9716418/Half-of-those-on-Liverpool-Care-Pathway-never-told.html Accessed August 2015
  3. NHS Choices. News analysis: What is the Liverpool Care Pathway? 2015. http://www.nhs.uk/news/2012/11November/Pages/What-is-the-Liverpool-Care-Pathway.aspx Accessed August 2015
  4. The Parliamentary and Health Service Ombudsman. Dying without dignity. Investigations by the Parliamentary and Health Service Ombudsman into complaints about end of life care. 2015. http://www.ombudsman.org.uk/__data/assets/pdf_file/0019/32167/Dying_without_dignity_report.pdf Accessed August 2015
  5. Mills M, Davies HT, Macrae WA. Care of Dying Patients in Hospital. BMJ. 2015. 309(6954): 83–586. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2541438/ Accessed August 2015
  6. Neuberger J, Guthrie C, Aaronovitch D, Hameed K, et al. More Care, Less Pathway. A review of the Liverpool Care Pathway. 2013. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/212450/Liverpool_Care_Pathway.pdf Accessed August 2015
  7. Leadership Alliance for the Care of Dying People. One Chance to Get it Right. Improving people’s experience of care in the last few days and hours of life. 2014. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/323188/One_chance_to_get_it_right.pdf Accessed August 2015
  8. Department of Health. New approach to care for the dying published. 2014. https://www.gov.uk/government/news/new-approach-to-care-for-the-dying-published Accessed August 2015
  9. National Institute for Health and Care Excellence (NICE). Care of the Dying Adult. Draft for Consultation. http://www.nice.org.uk/guidance/gid-cgwave0694/resources/care-of-the-dying-adult-full-guideline2 Accessed August 2015
  10. Donnelly, L. New NHS death guidelines ‘worse than Liverpool Care Pathway’, Daily Telegraph. 3rd August 2015. http://www.telegraph.co.uk/news/health/news/11779213/New-death-guidelines-worse-than-Liverpool-Care-Pathway.html

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