End of Life Care - Health Contents

1  Overview

1. Palliative and end of life care is provided to people who have an incurable and progressive illness. Good quality end of life care is seen as an essential component of modern health care services and in recent years a number of initiatives have been developed to improve the care people receive at this time.

2. There are many examples of good end of life care being provided in different settings. However, the experience that people approaching the end of life have varies and in too many cases is unacceptably poor. Of particular concern is the care that some people receive in acute hospitals, as has been highlighted in evidence from a number of sources.

3. In its evidence to this inquiry the National Council for Palliative Care remark:

    "… successive governments have set high aspirations, saying that the way we look after dying people is a litmus test for health and care and should be core business for the NHS. Despite that, there is still unacceptable variation, which would not be tolerated in any other area of practice."[2]

4. Each year around 500,000 people die in England and Wales. In 2013, approximately 80% of those who died were people aged over 65.[3] One third of all deaths are people aged 85 and over, but only 15% of those who receive specialist palliative care are in this age group.[4]

5. The large majority of deaths follow a period of chronic illness such as heart disease, cancer, stroke, chronic respiratory disease, neurological disease or dementia. Most deaths (53%) occur in NHS hospitals, with around 21% occurring at home, 18% in care homes, 5% in hospices and 3% elsewhere.[5] This is despite the fact that 63% of people say that they would prefer to die at home, while 29% would prefer to die in a hospice. Hospital was found to be the least preferred place of death in a study carried out by the Cicely Saunders Institute.[6] Other sources put the figure for home as the preferred place of death even higher: ComRes polling for the Dying Matters Coalition in April 2014 showed that 72% of people would want to die at home.[7] Macmillan Cancer Support cite evidence that shows that 85% of people who die in hospital would have preferred to die in another setting.[8] People do change their minds however and the stated preferred place of death may change as death approaches.[9]

6. The demographics of death in relation to age profile, cause of death and place of death changed significantly during the 20th century. In 1900 most people died in their own homes. Acute infections were a much more common cause of death and a far higher proportion of all deaths occurred in childhood or early adult life. As a result of these changes, familiarity with death within society as a whole has decreased. Many people nowadays do not experience the death of someone close to them until they are well into midlife. Many have not seen a dead body and as a society we seldom discuss death and dying openly.[10] Many people may lack the confidence to initiate discussions with medical staff about what should or shouldn't be done when someone is approaching the end of their life. [11]

7. Following a review of end of life care services the Department of Health announced a new approach for those caring for dying people in England. The approach focuses on achieving Five Priorities for Care that should be applied whenever and wherever someone is dying, whether in hospital, a hospice, their own home or another location.

8. The Committee decided to examine the issues around palliative and end of life care, focusing on how different care sectors support people who are likely to die within 12 months, what opportunities exist for improving care quality, and the experience of those caring for people at the end of life.

9. The terminology which has grown up in this area is poorly understood and lacks clarity. Terms such as end of life care, palliative care, supportive care, specialist palliative care, general palliative care, hospice care, etc. are not always used clearly or consistently.[12] The General Medical Council and the National Council for Palliative Care say that people can be said to be 'approaching the end of life' when they appear likely to die within the next twelve months.[13],[14] This is the definition the Committee has used for its inquiry.

10. The World Health Organisation's definition of 'palliative care' is "an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual."[15]

11. The National Council for Palliative Care (NCPC)'s guidance to doctors defines 'end of life care' as care that helps people with advanced, progressive, incurable illness to live as well as possible until they die. It enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support.[16] In their written evidence, NCPC say:

    We do note though that if end of life and palliative care were better and more widely understood, then this might enable better conversations between health and social care staff and people about death and dying, as well as services that meet their needs.[17]

12. Giving oral evidence to the inquiry, the Royal College of Physicians and Royal College of Nursing commented that end of life care is "everybody's business" in every care setting; it is not provided solely by specialist staff.[18] This view reiterates the National Institute for Health and Care Excellence (NICE)'s Quality Standard on End of Life Care which states that providing high quality end of life care and support should be an integral part of every health and social care worker's role.

13. People with more complex needs may require 'Specialist Palliative Care Services' (SPC). SPC is the active, total care of patients with progressive, advanced disease and their families. Care is provided by a multi-professional team who have undergone recognised specialist palliative care training. The aim of the care is to provide physical, psychological, social and spiritual support.[19]

14. It is worth noting that, while there is a continuing debate about legalising euthanasia and assisted suicide, these issues are outside the scope of this inquiry.

Beyond the Liverpool Care Pathway

15. The Government published its End of Life Care Strategy in 2008, and commented:

    Many consider death to be the last great taboo in our society and … most of us find it hard to engage in advance with the way in which we would like to be cared for at the end of life.

16. The Strategy recognised that many people did not have what could be described as a 'good death'—being treated as an individual with dignity and respect, being without pain and other symptoms, being in familiar surroundings, and being in the company of close family and/or friends—and highlighted a number of issues to improve the situation:

·  Government would work with the National Council for Palliative Care to raise the profile of end of life care and to change attitudes to death and dying in the wider society;

·  there was a need for an integrated approach to planning, contracting and monitoring of service delivery across health and social care;

·  all health and social care staff should be trained in communication for palliative care;

·  end of life care should be included in training for all staff at all levels, to ensure that they have the necessary knowledge, skills and attitudes needed to care for people who were dying;

·  everyone approaching the end of life should have their needs and preferences recorded in a care plan, including any advance decision to refuse treatment;

·  families and carers of people approaching the end of life should be involved in decision making and provided with practical and emotional support both during the person's life and following bereavement;

·  measurement of end of life care provision was necessary to monitor progress and facilitate change;

·  better use should be made of end of life care financial resources across health and social care. The Government committed an additional £383 million to implement the strategy;

·  the Liverpool Care Pathway, or an equivalent tool, was recommended for wider use than for patients with cancer—it should be used in hospitals, care homes, hospices and in people's homes.

17. The Strategy set out the key elements of an end of life care pathway and stressed that it was crucial that open discussions between health and social care staff, patients and their families and carers take place, to ensure the delivery of good end of life care. The Government recognised, however, that these discussions regularly failed to take place and that it would be a challenge to reverse that trend.[20]

18. The Strategy described the Liverpool Care Pathway for the Dying Person (LCP) as "a multi-professional, outcome-driven document that provides an evidence-based framework for the delivery of care in the last days or hours of life." This seemed to suggest that the LCP was a stand-alone document, rather than what it was intended to be: an approach to care in itself.

19. Until fairly recently, the LCP was widely used across the UK (excluding Wales) and commentators, including witnesses giving oral evidence to the inquiry,[21] have acknowledged that where it was being used well it had a transformative effect on the way that end of life care services were delivered, supporting but not replacing clinical judgement. In a survey of clinicians carried out by the British Medical Journal, 97% of consultants said the LCP allowed patients to die with dignity when used correctly.[22]

20. Giving oral evidence, Macmillan told us:

    There were some aspects of it that were very positive. I remember being a district nurse before the Liverpool care pathway and after it, and I was very much involved in implementing it in Cheshire where I worked. It made a huge difference to things like anticipatory prescribing of medication, because we used to struggle to get GPs to get medication into somebody's home. If people were in the dying phase, we had the drugs prescribed and ready to use.

21. However, following media criticism and reports of poor treatment in acute hospitals at nights and weekends, lack of access to specialist palliative care teams out of hours and at weekends, and poor levels of care and communication an independent panel, chaired by Baroness Neuberger, was established in 2013 to review its use.

22. The review panel found evidence of both good and poor care delivered through use of the LCP. Use of the Pathway led, in some cases, to standardised treatment and care, carried out irrespective of whether that was right for the particular person in the particular circumstances, causing unnecessary distress and harm to dying people and those who were important to them. One of the submissions to the review reported: "He was not given sufficient pain relief or sedation to ease his discomfort from what in effect was a slow death, attributable in part to dehydration and starvation."[23]

23. In their report the panel said:

    The Review panel has reluctantly concluded that the term 'Liverpool Care Pathway' is most unhelpful: anxious and upset relatives cannot be expected to understand what an 'integrated care pathway is, let alone what it has to do with Liverpool. A 'pathway' suggests to most people a road that leading somewhere. When someone is 'put on' a pathway, it sounds like, as one carer put it, they are being placed on "a conveyor belt to death". In the context of the debate about assisted dying and euthanasia, some carers have formed the impression that "the pathway" represents a decision on the part of clinicians, in effect, to kill their dying patients, when that is clearly not the case.

24. The panel concluded that in too many cases, the LCP had come to be regarded as a generic protocol and used as a 'tick box' exercise, leading to problems with delivery of care.[24] As a consequence they recommended that use of the LCP should be phased out by July 2014 and replaced by an individual end of life care plan.

25. Baroness Neuberger commented:

    Ultimately it is the way the LCP has been misused and misunderstood that has led to such great problems, along with it being simply too generic in its approach for the needs of some. Sadly, it is just too late to turn the clock back to get it used properly by everybody. That is why we have recommended phasing out the LCP and replacing it with a more personalised and clinically sensitive approach.[25]

26. The Leadership Alliance for the Care of Dying People (LACDP), set up after the independent review of the Liverpool Care Pathway, has developed a new approach to caring for dying people that is expected to be adopted by health and care providers. This approach focuses on the individual needs and wishes of the dying person and those closest to them, to both plan and deliver care. It centres around Five Priorities for Care which form a focus for care, as well as education and training, audit and research.[26]

27. The Five Priorities for Care are that, when it is thought that a person may die within the next few days or hours-

·  This possibility is recognised and communicated clearly, decisions made and actions taken in accordance with the person's needs and wishes, and these are regularly reviewed and decisions revised accordingly.

·  Sensitive communication takes place between staff and the dying person, and those identified as important to them.

·  The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants.

·  The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible.

·  An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, co-ordinated and delivered with compassion.[27]

28. Macmillan Cancer Support were part of the LACDP that developed the Five Priorities for Care. In their written evidence they comment:

    We understand the Department of Health will be conducting a review of progress in 2015. Anecdotally, however, there are problems with the implementation of these priorities as professionals report concerns that the picture is variable. Some areas have worked well across their locality and sectors to develop local guidance and documentation based on the recommendations of the Neuberger Review and, more recently, the Five Priorities for Care. Other areas, however, are still using the Liverpool Care Pathway by a different name.

29. The Department for Health has stressed however that the LCP is no longer valid and should not be used. Norman Lamb, giving evidence to the inquiry, explained:

    It should not be used … Absolutely not. We have been very clear about this. If clinicians and other health care workers, and indeed their employers, follow the principles, they will be on the right track. I commissioned the review by Baroness Neuberger and her team, and I wanted them to remain in place as a panel to monitor what happens over the first year of this new approach, so they are there ready to look at and monitor how things are going. It would be wholly wrong for a hospital, for example, just to re­badge their approach or their use of the Liverpool care pathway, call it something else, and carry on as before. It is not what everyone came together to achieve.[28]

30. Dr Martin McShane from NHS England, told us:

    We need to go back to the origins of the end of life care strategy from 2008, a 10­year strategy which set out some clear principles about addressing the key changes that were required. We have made quite a degree of progress in delivering that strategy…[29]

    We are thinking about trying to do it in the way we do things now, and we need to step outside that and ask what we need to change about our approach that would make this normal—which would make this the way we approach it.[30]

31. The Royal College of Physicians has found that many Trusts are not sufficiently assessing or discussing the quality of care available to patients. For example, only 53% of Trusts have a named board member with responsibility for the care of the dying and it had only been discussed at a Board meeting in 42% of Trusts in the last year. Their written evidence states:

    There is further evidence of low levels of assessment of delivery of end of life care. Only 56% of Trusts have conducted a formal audit of care in the previous year, despite recommendations that an audit into the delivery of care should be conducted annually. Trusts must recognise the importance of palliative care and ensure that the delivery of services are regularly assessed and discussed at board meetings so that patients' needs are sufficiently met.[31]

32. Sir Mike Richards told us:

    I have been to hospitals where it is very clear that those leading end of life care have direct access to the chief executive and the director of nursing, and others where that is not the case. Those where there is senior leadership and oversight tend to have made much more progress in moving on to what are now called the five priorities for care. Again, in that, as in everything else, there is wide variation.[32]

33. The move by the Care Quality Commission (CQC) to prioritise end of life care in its new approach to inspections across all sectors is very welcome. We hope that it will go some way towards ensuring that poor end of life care is seen as a 'never event', as suggested by a witness to the inquiry.[33] The CQC has also begun a thematic review of the quality of end of life care, to understand the barriers that prevent people receiving good end of life care. They will report on their findings during 2015. [34]

34. Every care provider should have a model in place based on the Five Priorities for Care that will deliver personal, bespoke care to people at the end of life. There should be no reason for any health or care organisation not to have introduced an appropriate alternative to the Liverpool Care Pathway.

35. We recommend that a senior named person in each NHS Trust and care provider is given responsibility for monitoring how end of life care is being delivered within their organisation.

36. We welcome the focus on end of life care by the Care Quality Commission and recommend that they monitor both acute and community health care providers' move to the new approach in their inspections and as part of their thematic review.

2   ELC 47, page 2 Back

3   Office for National Statistics (2013) What are the top causes of death by age and gender? Back

4   ELC 77, para 1.2 Back

5   Cicely Saunders Institute, Local Preferences and Place of Death in Regions within England 2010 Back

6   Ibid., Back

7   ELC 47, page 5 Back

8   ELC 42, para 2.3 Back

9   ELC 36, page 3 Back

10   Department of Health, End of Life Care Strategy, 2008 Back

11   ELC 49, para 8.1 Back

12   Association for Palliative Medicine, December 2012, Commissioning Guidance for Specialist Palliative Care: Helping to Deliver Commissioning Objectives Back

13   General Medical Council, May 2010, Treatment and Care Towards the End of Life: good practice in decision making Back

14   National Council for Palliative Care and National End of Life Care Programme, June 2011, Commissioning End of Life Care Back

15   http://www.who.int/cancer/palliative/definition/en/ Back

16   Association for Palliative Medicine, December 2012, Commissioning Guidance for Specialist Palliative Care: Helping to Deliver Commissioning Objectives Back

17   ELC 47, page 3 Back

18   Qq106-107 Back

19   Association for Palliative Medicine, December 2012, Commissioning Guidance for Specialist Palliative Care: Helping to Deliver Commissioning Objectives Back

20   Department of Health, End of Life Care Strategy, 2008 Back

21   Q28 Back

22   http://www.bmj.com/content/346/bmj.f1303 Back

23   More Care Less Pathway: A Review of the Liverpool Care Pathway Back

24   Leadership Alliance for the Care of Dying People, June 2014, One Chance to Get it Right Back

25   More Care Less Pathway: A Review of the Liverpool Care Pathway Back

26   House of Commons POST Note 481, Palliative and End of Life Care, 2014 Back

27   Leadership Alliance for the Care of Dying People, June 2014, One Chance to Get it Right Back

28   Q175 Back

29   Q177 Back

30   Q189 Back

31   ELC 16, para 8 Back

32   Q26 Back

33   Q8 Back

34   ELC 85, para 21 Back

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© Parliamentary copyright 2015
Prepared 15 March 2015