End of Life Care - Health Contents

3  Resources, support and other issues

Community resourcing

109. In the Five Year Forward View, NHS England state:

    Support and aftercare and end of life care-which improves patient experience and patient reported outcomes-will all increasingly be provided in community settings.[104]

110. In their written evidence, however, the Royal College of Nursing suggest that while much public debate and attention has been given to the need to shift care from acute to community settings, not enough resources are being invested in the community to make this a reality for most patients. They cite district nursing, a specialism within community nursing which includes end of life nursing care in patients' homes, as one particular area of concern. Their figures show that there has been a 44% reduction in the number of qualified district nursing staff in England in the last decade; the district nursing workforce is ageing, with 60% aged 45 or over; and only five students took up graduate and post graduate district nursing training courses in London universities in 2012. The RCN call for a clear commitment from the Government to appropriately fund and resource community services if the savings that could be accrued from the acute to community shift are to be realised.[105]

111. The NCPC's Specialist Palliative Care Workforce survey similarly reveals that specialist nursing workforce is ageing.[106] Avoiding a recruitment crisis will need proper planning at a national level.

112. Nursing homes with higher ratios of qualified nurses and care assistants to patients provide better care.[107]

113. We recommend that Health Education England and NHS England set out how they plan to address the shortfalls in the staffing of community care services. The Committee sees this as essential to enabling people to die at home and in other community settings including care homes and nursing homes, where that is their preference rather than in hospital. This should involve their plans for the recruitment and training of district nurses.


114. The Nuffield Trust in its report 'Exploring the Cost of Care at the End of Life' proposed that given the finite resources available for health care, there should be some understanding of the costs of end of life care, but "there is a stunning lack of good data surrounding costs for palliative care in England." They have carried out several studies looking at this issue and found that the cost of end of life care provided in hospital is significantly higher than care delivered by GPs, community nurses, local authority funded social care and hospices. The bulk of the hospital costs is due to emergency hospital admissions.[108]

115. In its written evidence to the inquiry the Cicely Saunders Institute supports this:

    There is early evidence that provision of palliative care can lead to reductions in the overall cost of healthcare, largely through reduction in hospital admissions, and reduction in acute interventions near end of life. This is important, since the recent Nuffield Trust report on costs of last year of life shows that acute hospital admissions costs-largely unplanned admissions - represent about 70% of health care costs in the last three months of life.

116. One of the concerns raised by a number of witnesses is the serious funding challenge faced by hospices, which threatens their ability to provide a wide range of services. The Association for Palliative Medicine of Great Britain and Ireland refer in their written evidence to a report by Hospice UK published in 2014 which showed that half of hospices surveyed in England had had their NHS statutory funding either cut or frozen in that year, largely due to financial restrictions on NHS commissioners. Hospices still rely to a great extent on charitable funding.[109]

117. Hospice care is not restricted to caring for people in a hospice building. As witnesses told us, it is also about providing specialist palliative care services to people in their own homes and providing respite support to the families and carers of terminally ill adults and children. The Rowcroft Hospice explained:

    As a society, we need to get away from the impression that hospices are buildings and beds. We provide community based services, hospice at home services and in patient unit services, but we also provide education services that support the non hospice providers of palliative care and care homes, and, indeed, the hospital district nurses, that enable them to deliver end of life palliative care services better than they would otherwise.[110]

118. While Together for Short Lives said:

    We hear from families that just using the local hospice for 15 or 16 hours to get a night's sleep so that they can keep going is totally imperative to their daily lives. Families will break down and local authorities will find themselves in the position of having to take these children into care, and there are not the resources available. It makes good economic sense to enable funding for short breaks.[111]

119. The NCPC has said, "The Department of Health has not yet decided what should be included in a Palliative Care Funding currency. This is essential."[112]

Free social care at end of life

120. We know that timely access to free social care is one of the barriers people at the end of life face when they would like to die at home. This is due to the complexity and length of the assessment and means-testing people have to go through prior to accessing either continuing healthcare or social care.[113]

121. The 2011 Palliative Care Funding Review, commissioned by the Secretary of State for Health, reported that 10-20% of the NHS budget is spent on people in the last year of their life, largely due to hospital admissions, and identified free social care at the end of life as 'key' to supporting people to die at home or in the community.[114]

122. Macmillan in their evidence state:

    There are also issues accessing the social care support that is already available. The National Audit Office has highlighted that the process for accessing state-funded social care is complicated, lengthy, and is separate from the healthcare system. For people who may only have weeks to live this fragmentation leads to delays that can prevent them receiving the care they need to die in the place of their choice.[115]

123. NCPC said:

    There is an evidence base for free, fast, social care at the end of life, which is likely to improve the rates of people dying at home. Some people at the end of life spend far too long in hospital waiting for a social care package, and in some case, even die in hospital, for want of social care support. People at the end of life and their families want to spend their last few weeks and days together, rather than phoning round for a social care package to be put in place. We work with five other national charities, Hospice UK, Macmillan Cancer Support, Marie Curie Cancer Care, the Motor Neurone Disease Association and Sue Ryder on this-our main call is that the financial assessment is removed for people at the end of life. This was recommended by the Palliative Care Funding Review, and endorsed by the Dilnot Commission and Barker Commission."[116]

124. The National Audit Office in written evidence to the inquiry said:

    Overall, we found that only limited information is available on the national and local costs of end of life care. Similarly, there is a lack of detail on how the proposed new funding arrangements will be applied.

    Estimating the total cost of end of life care is difficult due, in part, to the complexity of the funding arrangements. The Department has not calculated the total costs of end of life care comprehensively.

    The Department and other organisations have estimated the costs of some of the main elements of end of life care. While not providing a comprehensive total, in 2008 the Department estimated the costs of some of the main elements of end of life care. We uplifted these figures to account for inflation, which produced an estimate of £1.8 billion for 2013-14. The largest cost element is hospital admissions (estimated at some £800 million a year).

    The current funding approach has been criticised for a lack of transparency and inconsistencies. The 2011 Palliative Care Funding Review commented that end of life care contracting is "overly complicated, difficult to navigate and not joined-up enough, leading to a lack of fairness and transparency for commissioners, providers and patients. The system is focused on providers and not patients. The review team [was] therefore convinced that changes must be made swiftly to the system. [117]

125. Giving evidence, the Minister acknowledged that the Government is still trying to pin down a workable method for funding end of life care:

    There is work under way to try to develop a tariff for end of life and palliative care. If we can get there and do it in a way that does not create new distortions, it would be an advance on where we are at the moment.[118]

While NHS England referred to:

    Our inability to link data up and track outcomes across the whole system to how money is invested and what activity by people has taken place… Linking health and social care data is always very difficult and then, of course, because of the means-testing in social care there are different thresholds between different local authorities in how much money people might be personally spending.[119]

126. Notwithstanding the complexities, the Committee was disappointed by the lack of progress on developing a method to calculate the cost of free social care at the end of life and believes that developing this should be a priority.

127. In a letter to the inquiry Norman Lamb explained that a number of Palliative Care Funding Pilots were set up in April 2012 to collect data that would inform the development of a per-patient funding currency model for palliative care. Although the pilots collected data on the costs of care provided by the organisations who made up the pilot sites, they did not offer an estimate of the total spend across the NHS. From July 2013 the pilots also began collecting social care data. The aim of the additional data collection was to understand at per-patient level the costs of providing social care to people who were also in receipt of specialist palliative care.

128. Whilst the data has provided some material, further information outside the scope of the pilots is likely to be needed to properly cost a policy of free social care for people approaching the end of life. In particular, the pilots were unable to collect data on self-funded social care linked with periods of NHS specialist palliative care, partly because this data was not routinely collected by local authorities.

129. Many witnesses to this inquiry have also pointed out the inconsistency around health care being free at the end of life, so that a patient in a hospital or a hospice does not pay for his or her care; but because social care is not free, someone who spends time in a care home in their last days must find the money to pay for end of life care. This is at best confusing and inconsistent, at worst a barrier to people getting the care they need.

130. The NHS Continuing Healthcare Fast Track Pathway was developed to ensure that people with complex care needs, including a rapidly deteriorating condition that may be entering a terminal phase, are supported in their preferred place of care as quickly as possible. The Clinical Commissioning Group takes responsibility for commissioning and funding appropriate care, merging health and social care funding where appropriate. If the person receiving services through use of the Pathway is expected to die in the very near future, the CCG continues to fund their care package until they die.[120]

131. In written evidence from the Association for Palliative Medicine of Great Britain and Ireland (APM) we have been told that access to services through the CHC Fast Track Pathway is inconsistent across the country. APM members report that seemingly appropriate applications are being rejected and people are being advised that the funding does not exist.[121] A lack of clarity around who is eligible for access to services via the Fast Track Pathway could act as a barrier to many people who might wish to apply.

132. We were disappointed that the Government was unable to provide our inquiry with the latest figures on how much money is spent annually on specialist palliative care. The most recent assessment was made in 2011 when the Palliative Care Funding Review. It is important to have this information, firstly, to be able to identify if hospices will be unable to provide services and need to turn seriously ill people away because they are unable to raise the necessary funding to support the needs of people in their communities; and secondly, to have an understanding of the likely cost of providing free social care at the end of life.

133. In correspondence to the Committee subsequent to his giving oral evidence, the Minister told us:

    The Committee was also interested in the amount spent annually on specialist palliative care in England and requested an update on the 2011 figure of £450 million spent on specialist palliative care by primary care trusts.

    Unfortunately, I am unable to provide you with an update on the quoted figure as the spend on specialist palliative care by Clinical Commissioning Groups is not collected centrally.

    I understand from NHS England that although the Palliative Care Funding Pilots collected data on the costs of care provided by the organisations who made up the pilot sites, they do not offer an estimate of the total spend across the NHS.

    However, I am aware that the Review of Choice in End of Life Care has considered costs of care as part of its work. The Review's advice to Government is due to be published shortly.

134. We recommend that the Government clarify the eligibility criteria for the NHS Continuing Healthcare Fast Track Pathway and phase out the social care means test (financial assessment) for people at the end of life.

135. This Committee strongly recommends that the Government provide free social care at the end of life to ensure that no one dies in hospital for want of a social care package of support.

136. We recommend that the Government set out what it intends to do to ensure sustainable, long term funding for the hospice sector as part of their response to the Palliative Care Funding Review.

137. We recommend that the Government ensure that their proposals for the future funding of palliative care fully recognises the importance of the voluntary sector.

Bereavement support

138. The ONS carries out the National Survey of Bereaved People, known as VOICES and commissioned by NHS England. The aims of the survey are to assess the quality of care delivered in the last three months of life for adults who died in England and to assess variations in the quality of care delivered in different parts of the country and to different groups of patients. The last survey found:

    When asked whether they had talked to anyone from any support services since the death, most respondents reported that they had not, and did not want to (68%). However, 18% said that they had not, but would have liked to.[122]

139. Evidence to the inquiry from Macmillan refers to the experience of the people who care for those who are dying and the impact it has on them:

    Dying is rarely done in isolation and usually it involves families and friends. We are concerned, however, that across the wider UK, bereavement support is currently very fragmented and inequitable. Bereavement services and support is rarely a priority for service providers and there is little support in the system. It is not regarded as a health problem unless it manifests itself physically or mentally. There is a need, therefore, to raise awareness of the needs of the bereaved and issues related to pre-bereavement for individuals and families when someone knows they are dying. Specific barriers to improving bereavement support include:

·  Professionals are unaware of the presence of their role in bereavement support and lack knowledge of other services.

·  GPs are not informed of bereavement or may be unaware of how bereavement can affect individuals.

·  There is a lack of services available around bereavement including specialist services.

·  There is a lack of pastoral support in schools and in the workplace.

·  Individuals do not identify their own needs and do not seek help. They are rarely identified and rarely signposted to support.[123]

140. The Association for Palliative Medicine of Great Britain and Northern Ireland also told us that bereavement services are not consistently provided across the country and are often funded by charities. People who care for dying friends and relatives need support in the time before the person's death and afterwards, and special care may be required for those who experience particularly complicated grief, including children.[124] If carers witness poor care and themselves receive inadequate communication around a relative or friend's illness and death this can compound their loss and make it harder for them to come to terms with the death.[125]

141. The first national strategy for children's palliative care-Better Care, Better Lives-was published in February 2008.

    Whilst it is acknowledged that some parallels can be drawn between the principles applying to end of life care services for adults and those for children, it needs to be emphasised that there are also significant differences. For example, there are a wide variety of childhood conditions causing death before adulthood, many of which are rare. The time span of children's illnesses may also be different from adults, meaning that palliative care extends over many years. Moreover, children continue to develop physically, emotionally and cognitively, and this affects both their medical and social needs, as well as their understanding of disease and death. Above all, a child's death remains emotionally difficult, unnatural and unexpected for families and healthcare providers alike."[126]

142. The National Bereavement Alliance's written evidence explains that children who are bereaved of a parent or sibling are more likely to have clinical rates of mental health difficulty, may underachieve at GCSE and have a greater risk of poor health behaviours.[127]

143. Norman Lamb said, "The problem with all of this is that it is not just the dying person, but the person left behind, the loved one, who then lives with that awful experience for the rest of their life; we have a responsibility to them as well… making sure people have access to bereavement counselling is also very important." [128]

144. Bereavement support provision is currently fragmented, with services not consistently provided around the country. Family members and carers are too often left inadequately supported. We recommend that the Government and NHS England raise awareness amongst health and social care staff of the impact of bereavement and provide for universal access to bereavement services in its funding plans for palliative care.

Measuring quality of care

145. The End of Life Care Strategy makes it clear that good information on palliative and end of life care is necessary for patients and carers to be able to make informed choices about their care.[129] This is also essential for clinicians, commissioners and policy makers to be able to plan services and assess the quality of care.

146. In order to drive improvement in end of life care there needs to be a validated set of measures which are directly related to patient outcomes. This will allow an assessment of the different models of care being developed around the country, particularly in light of the phasing out of the Liverpool Care Pathway, and proper evaluation of the difference that end of life and palliative care interventions are making. At present, while service providers may be recording data on use of palliative and end of life care, there is no mechanism for compiling the information and making it widely accessible.

147. Witnesses giving oral evidence to the Committee remarked:

    There was one major difficulty with the Liverpool Care Pathway, which was that it was about measuring processes. It did not measure outcomes. What I mean by outcomes is the difference made to people's health or well-being… It is only if we show the difference made to pain management, breathlessness management and other difficult symptoms, and improvements in emotional well-being and family support, that we can show these things are making a difference.[130]

    If we were able to collect and measure data about the treatment or care that people receive through particular services, we would then be able much better to measure what the impact and effectiveness of those services is.[131]

148. We are aware that Public Health England (PHE) is consulting on options for introducing a new national collection of data from specialist palliative care, which they propose will be aligned with the information standard for electronic palliative care co-ordination systems (EPaCCS).[132] PHE will establish a number of pilots to test the feasibility of the proposed dataset.

149. The CQC acknowledge that there is a role here for them as the sector regulator:

    One of the things we need to be able to do is to raise the profile, measure what is good, publish what is good and then drive improvement through shining a spotlight. That is certainly what we at the Care Quality Commission are doing.[133]

150. We recommend the development of outcome measures for palliative care. These must be properly evaluated and funded in order to improve the quality of care for people at the end of life.

Research into Palliative and End of Life Care

151. Witnesses to the inquiry expressed concern that there is a lack of research evidence to inform the development of models for early identification of those people who would benefit from receiving palliative care and how to deliver palliative and end of life care services to non-cancer patients. We were told that just 10p in every £100 spent on health services research is devoted to palliative and end of life research.[134]

152. In their evidence the Childhood Bereavement Network stress that better data collection is needed on the number of children who are bereaved of a parent, seriously hampering service development and planning. They estimate that approximately 33,000 dependent children (under 18 years old) are bereaved of a parent each year, bringing change and challenge into their lives which can be devastating.[135]

153. The Government has provided information to the inquiry on the consultation carried out by the Palliative and End of Life Care Priority Setting Partnership, facilitated by the James Lind Alliance. This work has identified ten research priorities that matter most to people who are approaching the end of their life, their families and carers, and health and social care professionals:

·  What are the best ways of providing palliative care outside of working hours to avoid crises and help patients to stay in their place of choice? This includes symptom management, counselling and advice, GP visits and 24-hour support, for patients, carers and families.

·  How can access to palliative care services be improved for everyone regardless of where they are in the UK?

·  What are the benefits of Advance Care Planning and other approaches to listening to and incorporating patients' preferences? Who should implement this and when?

·  What information and training do carers and families need to provide the best care for their loved one who is dying, including training for giving medicines at home?

·  How can it be ensured that staff, including healthcare assistants, are adequately trained to deliver palliative care, no matter where the care is being delivered? Does increasing the number of staff increase the quality of care provided in all settings? To what extent does funding affect these issues?

·  What are the best ways to determine a person's palliative care needs, then initiate and deliver this care for patients with non-cancer diseases (such as chronic obstructive pulmonary disease (COPD), heart failure, motor neurone disease (MND), AIDS, multiple sclerosis, Crohn's disease, Parkinson's disease, dementia, and stroke)?

·  What are the core palliative care services that should be provided no matter what the patients' diagnoses are?

·  What are the benefits, and best ways, of providing care in the patient's home and how can home care be maintained as long as possible? Does good coordination of services affect this?

·  What are the best ways to make sure there is continuity for patients at the end of life, in terms of the staff that they have contact with, and does this improve quality of palliative care? Would having a designated case coordinator improve this process?

·  What are the best ways to assess and treat pain and discomfort in people at the end of life with communication and/or cognitive difficulties, perhaps due to motor neurone disease (MND), dementia, Parkinson's disease, brain tumour (including glioblastoma) or head and neck cancer, for example?

154. Norman Lamb said: "We recognise that it is a priority to do that work, and the fact that we have met and identified what the priorities for further research should be is indicative of that recognition. Of course, you also need good quality research proposals coming forward, but the fact that we have set out what the priorities need to be will, hopefully, encourage good, robust propositions to come forward."[136]

155. We recommend that the Government pursue the research priorities that matter most to people with terminal illnesses, their families and carers and the staff providing care professionally to them, and set out what funding will be provided to ensure that future policy on palliative and end of life care is informed by a robust evidence base.


156. Evidence provided to the Committee for this inquiry ventures that clear leadership on end of life care is lacking at the centre of Government, which suggests that it is not being treated as a priority. The NCPC commented:

    Our experience is that end of life care is too easily forgotten by decision-makers. For example, it was only included in the NHS Mandate for 2014-15 as a result of concerted lobbying (it had not been mentioned at all in the draft Mandate). It has been only briefly mentioned in the recent Five Year Forward View for the NHS, in a case study, with no priority being given to it … End of life care should be core business for the NHS, but is not being treated as such.[137]

    The thing we have consistently struggled with is lack of importance being attached to palliative and end of life care. It would be good if a poor experience of care at the end of life could be seen as a never event within the NHS.[138]

157. The Sue Ryder charity also express concern at the failure of the NHS's key document, which sets out its future direction, to provide leadership on end of life care:

    End of Life has also been impacted by the loss of the End of Life Care Programme… Leadership now lies with the National Clinical Director for End of Life Care whose resources are much diminished in comparison. Despite much activity around end of life, it is still not being sufficiently acknowledged by government, with no end of life care direction being provided within the Five Year Forward View from NHS England.[139]

158. We believe it is vitally important that the Government should provide clear leadership on care of the dying to ensure that models of best care are replicated around the country. In a Written Statement on 26 February 2015, responding to the Choice in End of Life Care Programme Board's Review of how the quality of end of life care could be improved by giving people greater choice,[140] the Minister for Care welcomed the Review's advice and noted that it is in line with the ambition set out in the Five Year Forward View.[141] The advice from the Programme Board reflects many of the recommendations we have presented in this report.

159. The Five Year Forward View sets out a direction of travel for the NHS in England, covering all the major statutory bodies. The Department of Health and NHS England should ensure that end of life care is prioritised and embedded in future planning at all levels. They should identify named individuals who will be responsible for ensuring that the new approach to end of life care, based on the Five Priorities, is delivered nationally.

104   NHS England, Oct 2014, Five Year Forward View Back

105   ELC 28, page 3 Back

106   ELC 47, page 7 Back

107   ELC 30, para 7.1 Back

108   Nuffield Trust, Sept 2014 Exploring the Cost of Care at the End of Life 2014 Back

109   ELC 36, page 2 Back

110   Q70 Back

111   Q96 Back

112   ELC 47, page 11 Back

113   ELC 47, page 12 Back

114   Palliative Care Funding Review, July 2011, Funding the Right Care and Support for Everyone Back

115   ELC 42, para 4.5 Back

116   ELC 47, page 12 Back

117   ELC 93 Back

118   Q198 Back

119   Q207 Back

120   Department of Health, Nov 2012 (Revised), Fast Track Pathway Tool for NHS Continuing Healthcare Back

121   ELC 36, page 4 Back

122   ONS, July 2014, National Survey of Bereaved People (VOICES) 2013 Back

123   ELC 42, para 11.4 Back

124   ELC 36, page 2 Back

125   ELC 90, page 5 Back

126   Department of Health, Feb 2008, Better Care, Better Lives Back

127   ELC 68, para 9 Back

128   Q242 Back

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

130   Q28 Back

131   Q24 Back

132   Public Health England, Mar 2015, Individual-Level Data Collection From Specialist Palliative Care Back

133   Q9 Back

134   Q14 Back

135   ELC 61, para 3 Back

136   Q224 Back

137   ELC 47, pages 6-7 Back

138   Q8 Back

139   ELC 44, para 2.2 Back

140   Choice in End of Life Care Review Board, Feb 2015, What's Important to me: A Review of Choice in End of Life Care Back

141   House of Commons, Written Statement (HCWS301) Back

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Prepared 15 March 2015