Downloaded from http://spcare.bmj.com/ on July 3, 2015 - Published by group.bmj.com
Editorial
Who pays for palliative care: an opportunity to get it right Jane Maher In July 2010, the Secretary of State for Health convened an independent review of the funding of “dedicated palliative care” for adults and children in England. The aim was to develop, for the fi rst time, a per patient mechanism to fund palliative care to meet the needs of the approximately 457 000 people who require palliative care every year, and in particular, the 92 000 who are currently not being reached.1 The review team aimed to create a fair and transparent funding system delivering better outcomes for patients and providing better value for the National Health Service (NHS). This required the development of a palliative care tariff based on assessed need, a funding system which incentivises good outcomes for patients irrespective of time and setting, and the commissioning of integrated care packages which stimulate community based services to enable more people to be cared for outside the acute sector. The team suggest important levers for change (table 1). Before the tariff could be discussed, the knotty question of defi ning “dedicated palliative care services” had to be addressed. In the report they have been defi ned as “services which ensure that people achieve an acceptable quality of life enabling them to die in the place of their choice”, with a division of services into three categories: specialist care services (care delivered by specialist providers such as specialist in-patient services), core services (services whose primary focus is palliative care, eg, community nursing teams) and universal palliative care services delivered by non-specialists (eg, general practitioners and social workers). One of the aims of pilot testing may be to refi ne these categories. For example, there are a number of successful multidisciplinary specialist services without dedicated in-patient beds. Very wide consultation (760 individuals and 380 organisations) was carried out to defi ne what the palliative care tariff should and should not include, with the Correspondence to Jane Maher, Macmillan Cancer Support, 89 Albert Embankment, London SE1 7UQ, UK; [email protected]
conclusion that it should pay for needs assessment and care planning, care coordination, all clinically assessed palliative needs and all social care needs (excluding residency costs) for patients approaching the end of life and on an end of life register. Society should fund bereavement care, information and advice, and complementary therapies, while the funding for carer support, adult respite and spiritual care should continue to be funded by a combination of the state and society, but not as part a palliative care tariff. The team have responded to the challenge of capturing the variety of the many people who need palliative care at different stages of their illness by proposing a classification framework based on the complexity of patient need. They have drawn on the Australian approach to adult palliative care funding, 2 with needs classified according to phase of illness (stable, unstable, deteriorating, dying), leading to 13 classes of need for adults and 12 for children. They have thus attempted to provide a matrix against which the phases of illness can be mapped in relation to other cost drivers of palliative and end of life care. The review recognises that there will inevitably be difficulties in ensuring that a tariff is reactive and flexible for different patients, for example, those who could experience a short period of decline before death (eg, those with some cancers) and those with a prolonged period of decline (eg, those with dementia). Identifying and enabling payment for the assessment and management of unstable episodes in those patients with complex needs who are not perceived to be in the last year of life is a real operational challenge. While the report emphasises the point that palliative care should be based on complexity of need as opposed to prognosis, entry onto an “end of life care register” is a central element in the proposed funding model, as this is the point when social care needs (excluding accommodation costs) will be funded without the need for further assessment. In current pilots, populating both practice based and locality based supportive or end of life care registers has not proved straightforward. The average time on the
BMJ Supportive & Palliative Care December 2011 Vol 1 No 3
register is around 12 weeks; however, eligibility for Department for Work and Pensions funding currently begins at 6 months after registration and the Royal College of General Practitioners and the General Medical Council propose that “end of life” consists of the last year of life. This in the context that accurate prediction is poor even for those with cancer (thought to be the most predictable end of life phase). There may therefore be challenges both in equitably populating the end of life care register for those approaching end of life and for registering those who are not in the last year of life but have palliative care needs, to enable access to the palliative care tariff. An underpinning principle is that a tariff should be linked to quality standards and outcome measures, again drawing on the Australian approach where the funding system is linked to outcome measures through the Palliative Care Outcome Collaboration, a data collection system which captures demographic, service related and clinical information related to each patient and where key metrics include time from referral to fi rst contact, time in an unstable phase of illness, changes specifically in pain and changes in other symptoms. 2 The report also makes it clear that it is essential that the review should be considered in the context of the 2008 End of Life Care Strategy and the development of the NICE End of Life Care Quality Standard, with synergy between all of these. There is early Australian evidence that benchmarking using a range of quality measures together with the funding model has led to improved quality of care, but it is not clear from the review how such benchmarking should be organised and resourced in England. And so we get to the costing... the review team suggest that their proposals will be cost neutral and this is based on fi nancial modelling undertaken by King’s College London. The report recognises there is currently huge variation in the amount of money paid by different Primary Care Trusts (PCTs) for dedicated adult palliative care. It is estimated that PCTs currently spend around £460 million annually, with an average spend of £3.1 million through to a maximum spend of £21 million. This leads to a variation of expenditure of £186 to £6213 per death on specialist palliative care.1 It is estimated that overall in England admissions in the last year of life cost £1.3 billion for children and £18.2 billion for adults. The review team suggest that the implementation of the review’s 279
Downloaded from http://spcare.bmj.com/ on July 3, 2015 - Published by group.bmj.com
Editorial Table 1
Proposed levers
1
A clear statement from government describing the palliative care support that patients, carers and families can expect from the NHS
2
A per patient funding model
3.
A locality based end of life register in every clinical commissioning group
4.
Removal of the necessity for social care needs assessment for patients at the end of life
5.
A lead provider for each clinical commissioning group
6
Development of outcome measures supported by the newly created dataset (for the tariff) and the NHS outcomes framework
7
Integrated care packages described for populations of 300 000–1.5 million
8 9
A standard contract for commissioning NHS palliative care services Access to 24/7 community services
NHS, National Health Service.
recommendations could enable 60 000 hospital deaths (at an estimated cost of £3000 per death) to occur outside the acute sector by 2021, and that this would release up to £180 million per annum, which would to pay for the proposed palliative care tariff. This would enable more people to die in the place of their choice and enable the core costs of the voluntary sector providers to be met, therefore enabling the use of charitable income to enhance patient and family experience over and above statutory requirements and ensure those in need who currently do not receive dedicated palliative care can do so. And here, of course, lies the rub: the difficulty in moving from savings based on theoretical modelling to cash which can be shifted from one sector to another. In England, the voluntary sector provides a significant amount of all dedicated palliative care services and 97% of providers estimate that their costs are not currently covered through NHS funding, 3 with funding ranging from 0% to 62%.4 A PCT survey from 2008 showed that 80% of PCTs used block contracts when
280
commissioning beds from voluntary hospices, with 70% of contracts negotiated annually.4 Commissioners will be looking for evidence from pilots that investment in a tariff will be paid for by resources moving from the acute sector to the community. There is much to be welcomed in this review. Tom Hughes-Hallett, Professor Sir Alan Craft, Catherine Davies and their team must be congratulated for their inclusive and rigorous approach and the way that they have attempted to balance the need for providers, including the voluntary sector, to be appropriately funded and for all sectors to recognise that payment must be related to services of a measurable quality, delivered equitably on the basis of measured need. The recognition of the need for additional investment in 24/7 community support to enable people to be cared for and to die at home is also very welcome. Highlighting that all providers have a responsibility to record and report on outcomes as well as activity and that funding unrelated to measurable outcome should cease are other very positive inclusions.
The piloting of the proposals in this review will be critically important and it is vital that evaluation occurs throughout the piloting phase, to learn and adapt the model as evidence becomes available. The location of the pilot sites across England must also be varied, from inner urban to regional and rural communities. There is a real opportunity for voluntary and statutory organisations to come together to make a palliative tariff work to ensure the improvement in palliative care services, and to ensure people have real choice about the care they receive at the end of life. I hope that the government makes the most of the opportunity it has created in commissioning this review by piloting the funding model and acting upon the pilots’ fi ndings. Competing interests JM is a Chief Medical Officer with Macmillan Cancer Support. Provenance and peer review Commissioned; externally peer reviewed. Received 8 September 2011 Accepted 1 October 2011 BMJ Supportive & Palliative Care 2011;1:279–280. doi:10.1136/bmjspcare-2011-000128
REFERENCES 1.
2.
3.
4.
Hughes-Hallet T, Craft A, Davies C, et al. Palliative Care Funding Review. Funding the Right Care and Support for Everyone, 2011. http://palliativecarefunding.org.uk/wp-content/ uploads/2011/06/PCFRFinal%20Report.pdf (accessed 1 July 2011). Eagar K, Gordon R, Hodkinson A, et al. The Australian National Sub-acute and Non-acute Patient Classification (AN-SNAP): Report of the National Sub-acute and Non-acute Casemix Classification Study. New South Wales, Australia: Centre for Health Service Development, University of Wollongong, 5. NAO. End of Life Care – Results of Censuses of Independent Hospices & NHS Palliative Care Providers, 2008. National Audit Office: End of Life Care, November 2008.
BMJ Supportive & Palliative Care December 2011 Vol 1 No 3
Downloaded from http://spcare.bmj.com/ on July 3, 2015 - Published by group.bmj.com
Who pays for palliative care: an opportunity to get it right Jane Maher BMJ Support Palliat Care 2011 1: 279-280
doi: 10.1136/bmjspcare-2011-000128 Updated information and services can be found at: http://spcare.bmj.com/content/1/3/279
These include:
Email alerting service
Receive free email alerts when new articles cite this article. Sign up in the box at the top right corner of the online article.
Notes
To request permissions go to: http://group.bmj.com/group/rights-licensing/permissions To order reprints go to: http://journals.bmj.com/cgi/reprintform To subscribe to BMJ go to: http://group.bmj.com/subscribe/
Editorial
Who pays for palliative care: an opportunity to get it right Jane Maher In July 2010, the Secretary of State for Health convened an independent review of the funding of “dedicated palliative care” for adults and children in England. The aim was to develop, for the fi rst time, a per patient mechanism to fund palliative care to meet the needs of the approximately 457 000 people who require palliative care every year, and in particular, the 92 000 who are currently not being reached.1 The review team aimed to create a fair and transparent funding system delivering better outcomes for patients and providing better value for the National Health Service (NHS). This required the development of a palliative care tariff based on assessed need, a funding system which incentivises good outcomes for patients irrespective of time and setting, and the commissioning of integrated care packages which stimulate community based services to enable more people to be cared for outside the acute sector. The team suggest important levers for change (table 1). Before the tariff could be discussed, the knotty question of defi ning “dedicated palliative care services” had to be addressed. In the report they have been defi ned as “services which ensure that people achieve an acceptable quality of life enabling them to die in the place of their choice”, with a division of services into three categories: specialist care services (care delivered by specialist providers such as specialist in-patient services), core services (services whose primary focus is palliative care, eg, community nursing teams) and universal palliative care services delivered by non-specialists (eg, general practitioners and social workers). One of the aims of pilot testing may be to refi ne these categories. For example, there are a number of successful multidisciplinary specialist services without dedicated in-patient beds. Very wide consultation (760 individuals and 380 organisations) was carried out to defi ne what the palliative care tariff should and should not include, with the Correspondence to Jane Maher, Macmillan Cancer Support, 89 Albert Embankment, London SE1 7UQ, UK; [email protected]
conclusion that it should pay for needs assessment and care planning, care coordination, all clinically assessed palliative needs and all social care needs (excluding residency costs) for patients approaching the end of life and on an end of life register. Society should fund bereavement care, information and advice, and complementary therapies, while the funding for carer support, adult respite and spiritual care should continue to be funded by a combination of the state and society, but not as part a palliative care tariff. The team have responded to the challenge of capturing the variety of the many people who need palliative care at different stages of their illness by proposing a classification framework based on the complexity of patient need. They have drawn on the Australian approach to adult palliative care funding, 2 with needs classified according to phase of illness (stable, unstable, deteriorating, dying), leading to 13 classes of need for adults and 12 for children. They have thus attempted to provide a matrix against which the phases of illness can be mapped in relation to other cost drivers of palliative and end of life care. The review recognises that there will inevitably be difficulties in ensuring that a tariff is reactive and flexible for different patients, for example, those who could experience a short period of decline before death (eg, those with some cancers) and those with a prolonged period of decline (eg, those with dementia). Identifying and enabling payment for the assessment and management of unstable episodes in those patients with complex needs who are not perceived to be in the last year of life is a real operational challenge. While the report emphasises the point that palliative care should be based on complexity of need as opposed to prognosis, entry onto an “end of life care register” is a central element in the proposed funding model, as this is the point when social care needs (excluding accommodation costs) will be funded without the need for further assessment. In current pilots, populating both practice based and locality based supportive or end of life care registers has not proved straightforward. The average time on the
BMJ Supportive & Palliative Care December 2011 Vol 1 No 3
register is around 12 weeks; however, eligibility for Department for Work and Pensions funding currently begins at 6 months after registration and the Royal College of General Practitioners and the General Medical Council propose that “end of life” consists of the last year of life. This in the context that accurate prediction is poor even for those with cancer (thought to be the most predictable end of life phase). There may therefore be challenges both in equitably populating the end of life care register for those approaching end of life and for registering those who are not in the last year of life but have palliative care needs, to enable access to the palliative care tariff. An underpinning principle is that a tariff should be linked to quality standards and outcome measures, again drawing on the Australian approach where the funding system is linked to outcome measures through the Palliative Care Outcome Collaboration, a data collection system which captures demographic, service related and clinical information related to each patient and where key metrics include time from referral to fi rst contact, time in an unstable phase of illness, changes specifically in pain and changes in other symptoms. 2 The report also makes it clear that it is essential that the review should be considered in the context of the 2008 End of Life Care Strategy and the development of the NICE End of Life Care Quality Standard, with synergy between all of these. There is early Australian evidence that benchmarking using a range of quality measures together with the funding model has led to improved quality of care, but it is not clear from the review how such benchmarking should be organised and resourced in England. And so we get to the costing... the review team suggest that their proposals will be cost neutral and this is based on fi nancial modelling undertaken by King’s College London. The report recognises there is currently huge variation in the amount of money paid by different Primary Care Trusts (PCTs) for dedicated adult palliative care. It is estimated that PCTs currently spend around £460 million annually, with an average spend of £3.1 million through to a maximum spend of £21 million. This leads to a variation of expenditure of £186 to £6213 per death on specialist palliative care.1 It is estimated that overall in England admissions in the last year of life cost £1.3 billion for children and £18.2 billion for adults. The review team suggest that the implementation of the review’s 279
Downloaded from http://spcare.bmj.com/ on July 3, 2015 - Published by group.bmj.com
Editorial Table 1
Proposed levers
1
A clear statement from government describing the palliative care support that patients, carers and families can expect from the NHS
2
A per patient funding model
3.
A locality based end of life register in every clinical commissioning group
4.
Removal of the necessity for social care needs assessment for patients at the end of life
5.
A lead provider for each clinical commissioning group
6
Development of outcome measures supported by the newly created dataset (for the tariff) and the NHS outcomes framework
7
Integrated care packages described for populations of 300 000–1.5 million
8 9
A standard contract for commissioning NHS palliative care services Access to 24/7 community services
NHS, National Health Service.
recommendations could enable 60 000 hospital deaths (at an estimated cost of £3000 per death) to occur outside the acute sector by 2021, and that this would release up to £180 million per annum, which would to pay for the proposed palliative care tariff. This would enable more people to die in the place of their choice and enable the core costs of the voluntary sector providers to be met, therefore enabling the use of charitable income to enhance patient and family experience over and above statutory requirements and ensure those in need who currently do not receive dedicated palliative care can do so. And here, of course, lies the rub: the difficulty in moving from savings based on theoretical modelling to cash which can be shifted from one sector to another. In England, the voluntary sector provides a significant amount of all dedicated palliative care services and 97% of providers estimate that their costs are not currently covered through NHS funding, 3 with funding ranging from 0% to 62%.4 A PCT survey from 2008 showed that 80% of PCTs used block contracts when
280
commissioning beds from voluntary hospices, with 70% of contracts negotiated annually.4 Commissioners will be looking for evidence from pilots that investment in a tariff will be paid for by resources moving from the acute sector to the community. There is much to be welcomed in this review. Tom Hughes-Hallett, Professor Sir Alan Craft, Catherine Davies and their team must be congratulated for their inclusive and rigorous approach and the way that they have attempted to balance the need for providers, including the voluntary sector, to be appropriately funded and for all sectors to recognise that payment must be related to services of a measurable quality, delivered equitably on the basis of measured need. The recognition of the need for additional investment in 24/7 community support to enable people to be cared for and to die at home is also very welcome. Highlighting that all providers have a responsibility to record and report on outcomes as well as activity and that funding unrelated to measurable outcome should cease are other very positive inclusions.
The piloting of the proposals in this review will be critically important and it is vital that evaluation occurs throughout the piloting phase, to learn and adapt the model as evidence becomes available. The location of the pilot sites across England must also be varied, from inner urban to regional and rural communities. There is a real opportunity for voluntary and statutory organisations to come together to make a palliative tariff work to ensure the improvement in palliative care services, and to ensure people have real choice about the care they receive at the end of life. I hope that the government makes the most of the opportunity it has created in commissioning this review by piloting the funding model and acting upon the pilots’ fi ndings. Competing interests JM is a Chief Medical Officer with Macmillan Cancer Support. Provenance and peer review Commissioned; externally peer reviewed. Received 8 September 2011 Accepted 1 October 2011 BMJ Supportive & Palliative Care 2011;1:279–280. doi:10.1136/bmjspcare-2011-000128
REFERENCES 1.
2.
3.
4.
Hughes-Hallet T, Craft A, Davies C, et al. Palliative Care Funding Review. Funding the Right Care and Support for Everyone, 2011. http://palliativecarefunding.org.uk/wp-content/ uploads/2011/06/PCFRFinal%20Report.pdf (accessed 1 July 2011). Eagar K, Gordon R, Hodkinson A, et al. The Australian National Sub-acute and Non-acute Patient Classification (AN-SNAP): Report of the National Sub-acute and Non-acute Casemix Classification Study. New South Wales, Australia: Centre for Health Service Development, University of Wollongong, 5. NAO. End of Life Care – Results of Censuses of Independent Hospices & NHS Palliative Care Providers, 2008. National Audit Office: End of Life Care, November 2008.
BMJ Supportive & Palliative Care December 2011 Vol 1 No 3
Downloaded from http://spcare.bmj.com/ on July 3, 2015 - Published by group.bmj.com
Who pays for palliative care: an opportunity to get it right Jane Maher BMJ Support Palliat Care 2011 1: 279-280
doi: 10.1136/bmjspcare-2011-000128 Updated information and services can be found at: http://spcare.bmj.com/content/1/3/279
These include:
Email alerting service
Receive free email alerts when new articles cite this article. Sign up in the box at the top right corner of the online article.
Notes
To request permissions go to: http://group.bmj.com/group/rights-licensing/permissions To order reprints go to: http://journals.bmj.com/cgi/reprintform To subscribe to BMJ go to: http://group.bmj.com/subscribe/
