This is NHS NEoLCP reporting -
Improving end of life care
CS 0248 Dementia integrated end of life care pathway
13 September 2012
- A multidisciplinary working group has developed an integrated end of life care pathway for people with dementia and their carers in Hull and the East Riding of Yorkshire
- 'Swap shop' training has been introduced to increase awareness of different roles
- Collaborative working between palliative and end of life services and dementia services is already showing benefits.
A multidisciplinary working group has developed an integrated end of life care pathway for people with dementia and their carers in Hull and the East Riding of Yorkshire
'Swap shop' training has been introduced to increase awareness of different roles
Collaborative working between palliative and end of life services and dementia services is already showing benefits.
Challenge identified and actions taken
A multidisciplinary working group in Hull and the East Riding of Yorkshire has developed an integrated care pathway following some evidence of a lack of co-ordinated, multidisciplinary palliative and end of life care for people with dementia and their carers in the area
Consisting of key stakeholders from statutory organisations, the third sector and university, the group initially amended the locally-developed, multi-agency Stepped Dementia Care Framework to include the end of life tasks that would occur at each stage. This created a long-term conditions version of the framework.
The group also mapped the ideal journey for an individual with dementia, ending with the individual dying in their preferred place of care with bereavement support in place. This contrasted with the current journey where the individual died in hospital as the result of a number of omissions, indicating the importance of planning, early interventions and collaboration.
The final result was the Integrated Care Pathway which outlines what actions need to happen to make the ideal journey a reality, who needs to be involved and what training is currently available. It also highlights the current gaps during different stages of the dementia journey:
- Early signs and symptoms
- Early signs and symptoms
- Ongoing support
- Deterioration and disease progression
- End of life
The process has shown that many services are already in place but there is a lack of awareness of each other's roles. 'Swap shop' style training is improving this and collaborative working between palliative and end of life services and dementia services, as outlined in the pathway, is already benefiting people with dementia and their carers.
Future plans and sustainability
By involving service users and carers, the working group aims to collect evidence to demonstrate the difference this work has made and the potential for future gains, including improved patient experience and possible cost savings through reduced hospital admissions.
It would like to see this work translated into local strategic planning since much senior level support and endorsement is already in place. A multi-agency collaborative event is planned for the autumn.
Tips for success and transferability
The approach taken in Hull and East Riding is replicable across the country. It was based on the enthusiasm and motivation of a few, which grew as more people became aware of the group. This is a very simple project that has sought to bring together interested parties to network and to develop informal agreements to improve care through better partnership working while also building on opportunities to influence future commissioning.
The challenge now is to progress this work further and ensure all areas of the individual's pathway improve.
Impact on quality and productivity
Instances of joint working between end of life care specialists and mental health specialists have led to improved care for the person and their loved ones, as well as contributing to avoiding unnecessary hospital admissions.
For example, in-reach work by Dove House Hospice in a psychiatric unit enabled an individual to have a good death in what had become a familiar setting and avoided admission to hospital.
Similarly, the Admiral Nurse team has acted in a consultancy capacity to support Dove House Hospice in their care of individuals with dementia and the development of the hospice's dementia suite.
The killing wards bear a strange fruit,
A nil by mouth and a DNR note;
In a side room, out of sight,
Strange fruit waiting out the night.
The parchment skin drying out,
The bulging eyes and the twisted mouth,
And fluids withheld and shallow breath,
On the Pathway is only death.