West Northumberland PBC group has focused on all aspects of the end-of-life pathway, from recognition of those patients entering the final stage through to the death itself. Dr David Shovlin explains
End-of-life care has long been a priority for West Northumberland PBC group. In 2007 we received funding from the Improvement Foundation for a series of workshops that brought together the stakeholders in the locality to map out the end-of-life patient pathway.
These workshops made it clear that the end-of-life pathway was fragmented, so we set up a palliative care partnership, overseen by the PBC group. In recent months we have secured funding for three new palliative care beds in a nursing home, extended the hospice-at-home service and set up systems to identify earlier patients who are dying.
Structures and organisation
The palliative care partnership meets bi-monthly and is led by Dr Bill Cunningham, a GP in Corbridge, and supported by a management consultant. It is a subgroup of West Northumberland PBC group, which covers 14 practices and 78,000 patients, and is accountable to and funded by the PBC group.
Our PBC group has a number of sub-groups for different specialties. Some had existed as informal clinical networks before PBC came along, and PBC has been able to harness what they do and involve them in the commissioning process.
Although the partnership is led by PBC, all the member organisations and representatives have an equal input.
Early on, the partnership identified the need to develop a palliative care service with local beds as the nearest hospice is 30 miles away in Newcastle. It also saw the need to focus on all components of the end-of-life pathway including:
• initial recognition of the final stage of life through the process of management of the condition
• hospital appointments and admissions, managing the patient as close to home as possible, minimising inappropriate or unwanted hospital admissions
• ensuring that all the arrangements are made to allow the patient to die with dignity in the place they wish to be.
We now have a locality-wide integrated approach involving all GP practices in West Northumberland.
Identifying patients who need help
To engage practices we used £23,000 from our freed-up resources – to give each practice a £750 initial incentive plus an ‘achievement payment' of 20p per patient per list. We've developed a traffic light tool that poses this question: would those looking after the patient (GP, district nurses or community matrons) be surprised if that patient were to die in the next 12 months?
If the answer is no, we encourage practices to put the patient on the palliative care register. That triggers other processes such as DS1500 forms, ensuring the patient is discussed regularly in practice meetings, that they have named key individuals looking after them, starting discussions about where they want to be when they die, how they want to be looked after in terms of hospital and so on.
The traffic light tool is so named because when patients are put on the register they are normally in the green phase – their illness is relatively stable and they don't need much input from primary care teams .
As their needs increase they move into amber, where we start to have discussions about the preferred place of death and so on.
The red phase is the final few weeks or days where we implement the Liverpool care pathway. This is an integrated pathway tool that provides guidance on the different aspects of care including comfort measures and discontinuation of inappropriate interventions (www.mcpcil.org.uk). We make sure out-of-hours services are aware of the patient and have all the necessary drugs to treat symptoms when they arise.
This is applicable to conditions across the board. We are keen to ensure that more people with non-cancer diagnoses are recognised at an early stage. These people tend to deteriorate step-wise over a number of years and often the fact that they are dying isn't recognised until the final hospital admission. Then it's too late to influence where they die and they often have inappropriate or futile interventions. If this was recognised at an earlier stage we could treat their symptoms and make arrangements to cater for their wishes.
Hospice at home
Tynedale Hospice at Home – a local charitable care organisation – was already providing nursing support to people dying in their homes. We decided to harness that resource and help it work with the other parts of the local healthcare service. Funded half by the PCT and half from charitable donations, it received a further £140,000 from Northumberland Service Improvement Fund (SIF) – a pot of £1.5m to pump-prime innovative projects – for a clinical nurse lead, who co-ordinates education and training, and a team of employed nurses on substantive contracts to guarantee help when it's needed. This funding is currently for two years, but will be incorporated into the baseline contract if this project is successful.
Palliative care beds
We then decided to develop palliative care beds at Charlotte Straker, one of the local nursing homes. Funding from SIF has paid for additional staff and two GP sessions per week for the beds (£499,500 for the three beds and £15,000 GP cover).
The costs of running and staffing those inpatient beds will be met by keeping more people out of hospital, thus saving admissions costs, and by implementing advance care planning in the local residential and nursing homes. This involves identifying and documenting patient wishes at an early enough stage and improving communication to out-of-hours providers to ensure they are aware of patients' individual needs – so avoiding unnecessary hospital admissions.
The partnership includes a consultant geriatrician and a consultant in palliative care who works at the hospice in Newcastle and provides much of the training and clinical governance support for the GP beds.
The consultants also identify patients who could be moved out of the hospital or hospice and back to a more local base.
GPs can admit directly to the beds in the new GP-led palliative care unit and have access to the support offered by Tynedale Hospice at Home. Practices are updated daily about bed availability via a web-link. Community matrons can identify suitable patients for the unit and can refer directly to Tynedale Hospice at Home. The palliative care unit is also available to be used by the local general hospital and by the hospice in Newcastle, for step-down admissions.
The main obstacle was securing from the PCT the £654,000 for the palliative care beds, GP support and increased support to Tynedale Hospice at Home. NHS North of Tyne Commissioning Decision Panel agreed half the money would come from SIF, covering the first year of the project. The other half would depend on the project demonstrating financial viability. The project was officially running in October 2009 and we are gathering information for that evaluation but we are confident we'll demonstrate financial viability.
The original business case demonstrated how the project would be self-funding after the first year based on reduced acute hospital admissions, which in turn depend on the other aspects of the programme; namely structured advance care planning, efficient use of the local community hospice and optimum bed occupancy in the new palliative care unit.
We need to demonstrate a reduction of 101 admissions per annum across the locality – equivalent to a reduction in overall non-elective admission rates of 1.3% on 2008/9 levels – to show financial viability and fund the beds. We are confident we can do this. Some of the patients who would otherwise be admitted to hospital will be cared for in the palliative care beds; others will be looked after at home through better use of advance care planning and support from Tynedale Hospice at Home. We envisage that following the completion of the pilot and a formal tendering process the project will be commissioned by the PCT.
Over the past three years the percentage of patients dying in their home environment across the locality has increased from 44% to 49%. This is since we've been actively identifying patients for end-of-life care and doesn't take into account the time the beds have been open – so we expect to see that trend continue and increase.
We have three beds open now and have had 17 patients through them, who stay an average of 14 days. The breakdown is 12 cancer, one COPD, two heart failure and two chronic renal failure patients. Some have died there and some have left once their symptoms are controlled.
The key for us has been engaging all the stakeholders. We've tried to break down organisational boundaries and applied lean methodology to make the patient pathway as smooth and efficient as possible, while respecting each individual's wishes.
It has taken time to get all the practices and organisations on board. Some have had to alter employment and working patterns to fit in with the project agenda.
We have developed a locality-wide programme of education involving staff from all primary care disciplines, colleagues from secondary care and the voluntary sector and patient and carer representatives. Continuous data collection, patient feedback and audit underpins these improvements and is used to inform the commissioning process.
Over the last three to four years we have audited cause and place of death and now have information about all deaths across the 14 practices, including whether patients are on palliative care registers and whether out-of-hours services have been informed.
Our aim is to help more people to be cared for in their preferred place of death. Ultimately we are aligned with the NHS North of Tyne objectives, which aim for 75% of all patients to be cared for out of hospital as part of the PCT five-year strategy.
We have linked with the national leads for end of life and care planning at the Department of Health in order to share what we have learned from the project and our work has been recognised by the Marie Curie Delivering Choice programme deliveringchoice.mariecurie.org.uk.
Above all, we have put the dying patient and their family and carers at the heart of what we do.
Dr David Shovlin is chair of West Northumberland PBC group and a GP in Hexham
An integrated approach to the end of life care 60 second summary
Initiative: A locality-wide integrated approach to end-of-life management. By avoiding acute hospital admissions through better advance care planning and increased support for patients who wish to remain at home, money is freed up from the non-elective budget to cover the increased costs of providing three local palliative care beds.
Costs: £499,500 to fund three palliative care beds in a local nursing home over two years; £140,000 additional funding to a Hospice at Home organisation, which provides nursing support to people dying in their homes; £15,000 for GP cover.
Staffing: A clinical nurse lead and a team of employed nurses for the Hospice at Home, additional staff and two GP sessions per week for the palliative care beds.
Results: Over the past three years the percentage of patients dying at home across the locality has increased from 44% to 49%.