CLINICAL COMMISSIONING
Commissioning end-of-life care in the second of her series on the role of clinical commissioning groups (CCGs), Anne-Maria Olphert considers the challenges in arranging appropriate care for those nearing the end of life
Anne-Maria Olphert
Chief Nurse and Director of Quality at Erewash Clinical Commissioning Group (CCG), Derbyshire
744
Table 1. Expected deaths Age at death
Number of deaths
Percentages
90
47
20%
Total
231
100%
This article draws on the learning from an audit on deaths over a 6-month period in a Derbyshire CCG area.
Defining ‘end of life’ This article uses the GMC’s (2010) definition of end of life: someone who is likely to die within the next 12 months. This definition includes people whose death is imminent (expected within a few hours or days) and those with: ■■ Advanced, progressive, incurable conditions ■■ General frailty and coexisting conditions that mean they are expected to die within 12 months ■■ Existing conditions if they are at risk of dying from a sudden acute crisis in their condition ■■ Life-threatening acute conditions caused by sudden catastrophic events. Defining when a person needs EOL care is individual and dependent on the person’s perspective and that of their health and socialcare professional. It could be marked by diagnosis of a condition that has a poor prognosis, or by exacerbation of a long-term condition. For others, death is an unforeseen event, and in this situation coroner involvement can be important. EOL care needs coexist with other health and social care needs and are influenced by a person’s religious, cultural and social circumstances. Consequently, EOL care services should be commissioned and delivered in an integrated and person-centred manner (National Institute for Health and Care Excellence (NICE), 2012). According to NICE (2012), just over 1% of people die each year. About 455 000 people died in England in 2010, two-thirds of whom were 75 or older. Deaths in England and Wales are expected to rise by 17% from 2012 to 2030. A large proportion of deaths are foreseeable, and a recent estimate suggests that about 355 000
people need good palliative care services every year, but around 92 000 people are not being reached. Despite some small improvements, there is still an enormous amount of progress needed to close the gap between preferred and actual place of death. Although 63% of people surveyed stated that home is their preferred place of death, in 2010 most deaths occurred in hospitals (53%) and only 21% occurred in the home, with an additional 18% in care homes. It could be argued that a care home is the patient’s usual place of residence and, as such, the figure of how many died in their preferred place of residence/care is actually more like 39%.
Commissioning person-centred care CCGs have the responsibility not only to commission hospital care for EOL patients, but also to ensure that community, third-sector providers and primary care are working together to provide the very best care and support for patients’ carers and families. The achievement of person-centered care can be hindered by the funding and commissioning levers that currently exist. For example, the indicator ‘Proportion of deaths in usual place of residence’ focuses on enabling more people to die in their usual place of residence and consequently a reduction in the proportion of deaths occurring unnecessarily in hospital. This indicator is based on consistent survey data (NICE, 2012) showing that most people would choose to be cared for and to die at home. However, person-centered care is vital and needs services to find out about and act on individual preferences and changing circumstances, rather than rigidly imposing any single model of care. If an acute hospital is the most appropriate place of death, then this should be supported, although it may appear to conflict with the target set.
© 2014 MA Healthcare Ltd
P
lanning and purchasing of NHS services is referred to as ‘commissioning’. In England, general hospital services, urgent and emergency care, mental health and community services are commissioned at population level by 211 clinical commissioning groups (CCGs), who hold most of the NHS budget (£65 billion in 2012/13, of a total £109 billion). Each CCG is formed from the GP practices in that locality, who come together to assess the needs of their population and commission services from NHS or other provider organisations that meet those needs (King’s Fund, 2013). Commissioning end-of-life (EOL) care passed to CCGs in April 2013. The Royal College of General Practioners (RCGP) guidance suggests that EOL care is one of the greatest challenges we face as a society and a healthcare system (Thomas and Paynton, 2013). Currently, although wellregarded internationally (the UK came top of the quality of death audit (Thomas and Paynton, 2013)), we know there are serious problems and we are not yet getting it right. Patients who are approaching the end of their life need highquality treatment and care that support them in living as well as possible until they die, and to die with dignity. In light of the controversies around the Liverpool Care Pathway (LCP), ‘do not resuscitate’ orders and lack of dignity in hospitals (NHS Confederation, 2012), this article goes some way to explaining the challenges facing commissioners in EOL care. EOL care involves a large number of thirdsector providers, notably hospices, and some are small organisations that could be unintentionally destabilised by changes in commissioning arrangements, including the impact of potentially having to work with multiple commissioning organisations. In addition, it is now widely agreed (General Medical Council (GMC), 2010) that high-quality treatment and care towards the end of life includes: palliative care that focuses on managing pain and other distressing symptoms; providing psychological, social and spiritual support to patients; and supporting those close to the patient. However, it is not always recognised that palliative care can be provided at any stage in the progression of a patient’s illness, not only in the last few days of their life.
British Journal of Nursing, 2014, Vol 23, No 13
British Journal of Nursing. Downloaded from magonlinelibrary.com by 129.096.252.188 on December 5, 2015. For personal use only. No other uses without permission. . All rights reserved.
CLINICAL COMMISSIONING One of the critical aspects of EOL care commissioning (Thomas and Paynton, 2013) is to consider how it integrates with other changes occurring, especially in relation to the work on multimorbidities, long-term conditions, the elderly frail and those with dementia.This means: ■■ Identifying those patients at risk of dying in the next year ■■ Integrated anticipatory care planning with a lead professional ■■ Supporting patients and their carers in taking greater control. Lead commissioning arrangements may be appropriate if the commissioning population is small, or if an organisation provides services to more than one commissioner. These agreements need robust governance arrangements and, if possible, they should link with existing networks. As EOL care involves a large number of thirdsector providers, host commissioning (on behalf of several organisations) is important with the implementation of CCGs. All hospice care in England is provided by charities (King’s Fund, 2013), with many small and local hospices bidding for NHS contracts supplemented by charitable donations. Within primary care, GP practices are incentivised to maintain a palliative care register (also known as supportive care register) of patients in the last 12 months of their lives, but management of EOL care remains variable.
© 2014 MA Healthcare Ltd
Local audit results An audit of nine GP practices’ adult data was undertaken for the period 1 April 2013 to 30 September 2013 (6 months) in Derbyshire to look at sudden or unexpected deaths, age of deaths, cause of death, place of death and tools in place to enable a person to die in their preferred place of care. The audit was undertaken to establish a baseline of what currently happens so that a further audit can identify improvements and areas for development. Information was entered into an Excel spreadsheet per practice with no identifiable patient data. The population covered was 71 300 patients, which, with an expected 1% dying in a given year, equates to about 700 patients. For the period identified, 347 patients had died; after deducting those patients that were transferred (27), this left 320 records to be audited. Of this 320, 89 patients were identified as having died unexpectedly. Table 1 and Table 2 show the expected deaths. We can see from the figures in the tables that deaths occurring in hospital (41%) are below the national average of 53%, with 49% dying in their usual place of residence compared with the national figure of 39%, confirming the variability across England. CCGs are working with primary care to increase the numbers on the palliative care register, but we know the numbers are much
British Journal of Nursing, 2014, Vol 23, No 13
Table 2. Expected deaths by place Place of death
Totals
Percentages
Home/usual place of residence
113
49%
Hospital
94
41%
Hospice/community hospital
20
8%
No place recorded
4
2%
Total
231
100%
Table 3. Place of death for those on palliative care register Place of death
Number of deaths
Percentages
Home/usual place of residence
50
62%
Hospital
19
23.5%
Hospice/community hospital
10
12%
Unknown
2
2.5%
Total on register
81
100%
lower than would be expected. The benefits to commissioners in identifying their 1% are: ■■ The patient and their carers have time to deal with the news and realign their priorities ■■ The patient is less likely to be subject to treatments of limited clinical value ■■ You can plan appropriate EOL care rather than deal with a series of crises ■■ Well-organised community support can halve the cost of hospital admission and result in 70% of people realising their choice to die at home—over twice the number in the general population (Dying Matters, 2014) Table 3 shows the place of death for those on the palliative register. While the number on the register is low, of the patients identified, 62% were able to die in their usual place of residence, which would suggest a better experience for patients’ carers and families.
Liverpool Care Pathway (LCP) Because of substantial criticism of the LCP in the media and elsewhere, Norman Lamb MP, Minister of State for Care Support, asked Baroness Julia Neuberger to chair a panel to review the use and experience of the LCP in England, to be kept independent of Government and the NHS. The Independent Review (2013) considered evidence from many quarters: written submissions from members of the public and health professionals with experience of the LCP, as well as professional bodies and other organisations; a review of academic literature; a review of relevant hospital complaints; and surveys of health professionals. The panel also met members of the public at four sessions to hear their experiences of the LCP directly. Following the independent review of the use of the LCP for the dying patient, and the subsequent announcement of the phasing out of the LCP, interim amendments have been made to the quality standard produced by NICE (2013). These amendments, which relate to the removal of direct and indirect references to the LCP, reflect
the gradual phasing out of the LCP and ensure that the NICE quality standard remains current.
Conclusion NHS England and CCGs should work together to address what are clearly considerable inconsistencies in the quality of care for the dying and could so by means of better commissioning practices. The review into the LCP also uncovered issues that strongly echo those raised in the Mid Staffordshire enquiry, notably a lack of openness and candour among clinical staff; a lack of compassion; a need for improved skills and competencies in caring for the dying; and a need to put the patient, their relatives and carers first, treating them with dignity and respect. Although the NHS Mandate (Department of Health, 2013) makes EOL care one of a large number of priorities for NHS England, the review panel strongly recommends that the Government set improved quality of care for the dying as a priority for NHS England in the next mandate. CCGs can make a real difference when commissioning EOL care, taking into account BJN the patient’s, family’s and carers’ wishes. Department of Health (2013) NHS Mandate, 2014 to 2015. DH, London Dying Matters (2014) Identifying end of life patients. http:// tinyurl.com/lvu6bye (accessed 30 June 2014) General Medical Council (2010) Treatment and care towards the end of life: good practice in decision making. http:// tinyurl.com/29gccnc (accessed 30 June 2014) King’s Fund (2013) Co-ordinated care for people with complex chronic conditions. Midhurst Macmillan Community Specialist Palliative Care Service. King’s Fund, London Independent Review of the Liverpool Care Pathway (2013) More Care, Less Pathway. http://tinyurl.com/l4asno2 (accessed 30 June 2014) National Institute for Health and Care Excellence (2012) Guide for commissioners on end of life care for adults. http://tinyurl.com/c22elj4 (accessed 30 June 2014) National Institute for Health and Care Excellence (2013) End of life care for adults. http://guidance.nice.org.uk/ QS13 (accessed 30 June 2014) NHS Confederation (2012) Delivering Dignity: Securing dignity in care for older people in hospitals and care homes. http:// tinyurl.com/o5dfheq (accessed 30 June 2014) Thomas K, Paynton D for Royal College of General Practitioners (2013) RCGP Commissioning Guidance in End of Life Care. March. http://tinyurl.com/mcjzhce (accessed 2 July 2014)
745
British Journal of Nursing. Downloaded from magonlinelibrary.com by 129.096.252.188 on December 5, 2015. For personal use only. No other uses without permission. . All rights reserved.
Commissioning end-of-life care in the second of her series on the role of clinical commissioning groups (CCGs), Anne-Maria Olphert considers the challenges in arranging appropriate care for those nearing the end of life
Anne-Maria Olphert
Chief Nurse and Director of Quality at Erewash Clinical Commissioning Group (CCG), Derbyshire
744
Table 1. Expected deaths Age at death
Number of deaths
Percentages
90
47
20%
Total
231
100%
This article draws on the learning from an audit on deaths over a 6-month period in a Derbyshire CCG area.
Defining ‘end of life’ This article uses the GMC’s (2010) definition of end of life: someone who is likely to die within the next 12 months. This definition includes people whose death is imminent (expected within a few hours or days) and those with: ■■ Advanced, progressive, incurable conditions ■■ General frailty and coexisting conditions that mean they are expected to die within 12 months ■■ Existing conditions if they are at risk of dying from a sudden acute crisis in their condition ■■ Life-threatening acute conditions caused by sudden catastrophic events. Defining when a person needs EOL care is individual and dependent on the person’s perspective and that of their health and socialcare professional. It could be marked by diagnosis of a condition that has a poor prognosis, or by exacerbation of a long-term condition. For others, death is an unforeseen event, and in this situation coroner involvement can be important. EOL care needs coexist with other health and social care needs and are influenced by a person’s religious, cultural and social circumstances. Consequently, EOL care services should be commissioned and delivered in an integrated and person-centred manner (National Institute for Health and Care Excellence (NICE), 2012). According to NICE (2012), just over 1% of people die each year. About 455 000 people died in England in 2010, two-thirds of whom were 75 or older. Deaths in England and Wales are expected to rise by 17% from 2012 to 2030. A large proportion of deaths are foreseeable, and a recent estimate suggests that about 355 000
people need good palliative care services every year, but around 92 000 people are not being reached. Despite some small improvements, there is still an enormous amount of progress needed to close the gap between preferred and actual place of death. Although 63% of people surveyed stated that home is their preferred place of death, in 2010 most deaths occurred in hospitals (53%) and only 21% occurred in the home, with an additional 18% in care homes. It could be argued that a care home is the patient’s usual place of residence and, as such, the figure of how many died in their preferred place of residence/care is actually more like 39%.
Commissioning person-centred care CCGs have the responsibility not only to commission hospital care for EOL patients, but also to ensure that community, third-sector providers and primary care are working together to provide the very best care and support for patients’ carers and families. The achievement of person-centered care can be hindered by the funding and commissioning levers that currently exist. For example, the indicator ‘Proportion of deaths in usual place of residence’ focuses on enabling more people to die in their usual place of residence and consequently a reduction in the proportion of deaths occurring unnecessarily in hospital. This indicator is based on consistent survey data (NICE, 2012) showing that most people would choose to be cared for and to die at home. However, person-centered care is vital and needs services to find out about and act on individual preferences and changing circumstances, rather than rigidly imposing any single model of care. If an acute hospital is the most appropriate place of death, then this should be supported, although it may appear to conflict with the target set.
© 2014 MA Healthcare Ltd
P
lanning and purchasing of NHS services is referred to as ‘commissioning’. In England, general hospital services, urgent and emergency care, mental health and community services are commissioned at population level by 211 clinical commissioning groups (CCGs), who hold most of the NHS budget (£65 billion in 2012/13, of a total £109 billion). Each CCG is formed from the GP practices in that locality, who come together to assess the needs of their population and commission services from NHS or other provider organisations that meet those needs (King’s Fund, 2013). Commissioning end-of-life (EOL) care passed to CCGs in April 2013. The Royal College of General Practioners (RCGP) guidance suggests that EOL care is one of the greatest challenges we face as a society and a healthcare system (Thomas and Paynton, 2013). Currently, although wellregarded internationally (the UK came top of the quality of death audit (Thomas and Paynton, 2013)), we know there are serious problems and we are not yet getting it right. Patients who are approaching the end of their life need highquality treatment and care that support them in living as well as possible until they die, and to die with dignity. In light of the controversies around the Liverpool Care Pathway (LCP), ‘do not resuscitate’ orders and lack of dignity in hospitals (NHS Confederation, 2012), this article goes some way to explaining the challenges facing commissioners in EOL care. EOL care involves a large number of thirdsector providers, notably hospices, and some are small organisations that could be unintentionally destabilised by changes in commissioning arrangements, including the impact of potentially having to work with multiple commissioning organisations. In addition, it is now widely agreed (General Medical Council (GMC), 2010) that high-quality treatment and care towards the end of life includes: palliative care that focuses on managing pain and other distressing symptoms; providing psychological, social and spiritual support to patients; and supporting those close to the patient. However, it is not always recognised that palliative care can be provided at any stage in the progression of a patient’s illness, not only in the last few days of their life.
British Journal of Nursing, 2014, Vol 23, No 13
British Journal of Nursing. Downloaded from magonlinelibrary.com by 129.096.252.188 on December 5, 2015. For personal use only. No other uses without permission. . All rights reserved.
CLINICAL COMMISSIONING One of the critical aspects of EOL care commissioning (Thomas and Paynton, 2013) is to consider how it integrates with other changes occurring, especially in relation to the work on multimorbidities, long-term conditions, the elderly frail and those with dementia.This means: ■■ Identifying those patients at risk of dying in the next year ■■ Integrated anticipatory care planning with a lead professional ■■ Supporting patients and their carers in taking greater control. Lead commissioning arrangements may be appropriate if the commissioning population is small, or if an organisation provides services to more than one commissioner. These agreements need robust governance arrangements and, if possible, they should link with existing networks. As EOL care involves a large number of thirdsector providers, host commissioning (on behalf of several organisations) is important with the implementation of CCGs. All hospice care in England is provided by charities (King’s Fund, 2013), with many small and local hospices bidding for NHS contracts supplemented by charitable donations. Within primary care, GP practices are incentivised to maintain a palliative care register (also known as supportive care register) of patients in the last 12 months of their lives, but management of EOL care remains variable.
© 2014 MA Healthcare Ltd
Local audit results An audit of nine GP practices’ adult data was undertaken for the period 1 April 2013 to 30 September 2013 (6 months) in Derbyshire to look at sudden or unexpected deaths, age of deaths, cause of death, place of death and tools in place to enable a person to die in their preferred place of care. The audit was undertaken to establish a baseline of what currently happens so that a further audit can identify improvements and areas for development. Information was entered into an Excel spreadsheet per practice with no identifiable patient data. The population covered was 71 300 patients, which, with an expected 1% dying in a given year, equates to about 700 patients. For the period identified, 347 patients had died; after deducting those patients that were transferred (27), this left 320 records to be audited. Of this 320, 89 patients were identified as having died unexpectedly. Table 1 and Table 2 show the expected deaths. We can see from the figures in the tables that deaths occurring in hospital (41%) are below the national average of 53%, with 49% dying in their usual place of residence compared with the national figure of 39%, confirming the variability across England. CCGs are working with primary care to increase the numbers on the palliative care register, but we know the numbers are much
British Journal of Nursing, 2014, Vol 23, No 13
Table 2. Expected deaths by place Place of death
Totals
Percentages
Home/usual place of residence
113
49%
Hospital
94
41%
Hospice/community hospital
20
8%
No place recorded
4
2%
Total
231
100%
Table 3. Place of death for those on palliative care register Place of death
Number of deaths
Percentages
Home/usual place of residence
50
62%
Hospital
19
23.5%
Hospice/community hospital
10
12%
Unknown
2
2.5%
Total on register
81
100%
lower than would be expected. The benefits to commissioners in identifying their 1% are: ■■ The patient and their carers have time to deal with the news and realign their priorities ■■ The patient is less likely to be subject to treatments of limited clinical value ■■ You can plan appropriate EOL care rather than deal with a series of crises ■■ Well-organised community support can halve the cost of hospital admission and result in 70% of people realising their choice to die at home—over twice the number in the general population (Dying Matters, 2014) Table 3 shows the place of death for those on the palliative register. While the number on the register is low, of the patients identified, 62% were able to die in their usual place of residence, which would suggest a better experience for patients’ carers and families.
Liverpool Care Pathway (LCP) Because of substantial criticism of the LCP in the media and elsewhere, Norman Lamb MP, Minister of State for Care Support, asked Baroness Julia Neuberger to chair a panel to review the use and experience of the LCP in England, to be kept independent of Government and the NHS. The Independent Review (2013) considered evidence from many quarters: written submissions from members of the public and health professionals with experience of the LCP, as well as professional bodies and other organisations; a review of academic literature; a review of relevant hospital complaints; and surveys of health professionals. The panel also met members of the public at four sessions to hear their experiences of the LCP directly. Following the independent review of the use of the LCP for the dying patient, and the subsequent announcement of the phasing out of the LCP, interim amendments have been made to the quality standard produced by NICE (2013). These amendments, which relate to the removal of direct and indirect references to the LCP, reflect
the gradual phasing out of the LCP and ensure that the NICE quality standard remains current.
Conclusion NHS England and CCGs should work together to address what are clearly considerable inconsistencies in the quality of care for the dying and could so by means of better commissioning practices. The review into the LCP also uncovered issues that strongly echo those raised in the Mid Staffordshire enquiry, notably a lack of openness and candour among clinical staff; a lack of compassion; a need for improved skills and competencies in caring for the dying; and a need to put the patient, their relatives and carers first, treating them with dignity and respect. Although the NHS Mandate (Department of Health, 2013) makes EOL care one of a large number of priorities for NHS England, the review panel strongly recommends that the Government set improved quality of care for the dying as a priority for NHS England in the next mandate. CCGs can make a real difference when commissioning EOL care, taking into account BJN the patient’s, family’s and carers’ wishes. Department of Health (2013) NHS Mandate, 2014 to 2015. DH, London Dying Matters (2014) Identifying end of life patients. http:// tinyurl.com/lvu6bye (accessed 30 June 2014) General Medical Council (2010) Treatment and care towards the end of life: good practice in decision making. http:// tinyurl.com/29gccnc (accessed 30 June 2014) King’s Fund (2013) Co-ordinated care for people with complex chronic conditions. Midhurst Macmillan Community Specialist Palliative Care Service. King’s Fund, London Independent Review of the Liverpool Care Pathway (2013) More Care, Less Pathway. http://tinyurl.com/l4asno2 (accessed 30 June 2014) National Institute for Health and Care Excellence (2012) Guide for commissioners on end of life care for adults. http://tinyurl.com/c22elj4 (accessed 30 June 2014) National Institute for Health and Care Excellence (2013) End of life care for adults. http://guidance.nice.org.uk/ QS13 (accessed 30 June 2014) NHS Confederation (2012) Delivering Dignity: Securing dignity in care for older people in hospitals and care homes. http:// tinyurl.com/o5dfheq (accessed 30 June 2014) Thomas K, Paynton D for Royal College of General Practitioners (2013) RCGP Commissioning Guidance in End of Life Care. March. http://tinyurl.com/mcjzhce (accessed 2 July 2014)
745
British Journal of Nursing. Downloaded from magonlinelibrary.com by 129.096.252.188 on December 5, 2015. For personal use only. No other uses without permission. . All rights reserved.
