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End of Life Care – Coordination of Care
This article is the fifth in a series about end of life care. The first article in the series is “End of life care - an introduction”, which set out the framework to be expanded in the series.
In that article we noted that there were a number of sources of information regarding end of life care. These include the NHS National End of Life Care Programme, the National Gold Standard Framework, and the Social Care Institute for Excellence (SCIE) resource “Dementia Gateway”. The second article is entitled “End of life care – elements of care”, and considers the four elements of care which should be present throughout the six steps of the Programme. The third recent article, entitled “End of life care - Discussions as the end of life approaches”, dealt with the need to open up frank and transparent communications at the very beginning of a person’s journey towards the end of their life. The fourth article, entitled “End of life care – assessment and care planning ” briefly revisited the principles of care planning, with particular reference to end of life care.
In this article we examine coordination of care.
As a reminder, the NHS National End of Life Care Programme lists six steps in the end of life care pathway:
- Discussions as the end of life approaches
- Assessment and care planning
- Coordination of care
- Service delivery
- Last days of life
- Care after death
The Programme also lists four elements of care which should be present throughout the six steps listed above.
- Support for carers
- Information for patients and carers
- Spiritual care
- Social care
Coordination of care
It is fundamental to end of life care that several agencies and organisations will be involved in providing services to the service user, wherever that person be located. Some agencies may provide more than one aspect of service; for instance a hospice at home service may provide financial and benefit advice and support in addition to direct personal and nursing care. Occupation therapists and physiotherapists are likely to be quite intensively involved, in addition to the range of services normally met when less complex needs are supported.
A case study reported on the NHS National End of Life Care Programme web site (link below) illustrates a small but typical element of the holistic approach required to provide effective end of life care.
“George* was 75 years old. He lived with Ruth, his wife of over 50 years, and was supported by a large extended family.
George was diagnosed with myeloma and treated with chemotherapy plus radiotherapy for chest wall pain. He had a very relaxed attitude to his illness and the problems it created, dealing with each day as it came.
About a year after diagnosis George reported pain, worse on movement, in the back, right hip, right shoulder and central chest area. Investigations showed an impacted fractured neck of right femur which was inoperable but safe to weight bear and mobilise as pain allowed.
Treatment options for myeloma were limited because of his poor response and tolerance to chemotherapy. They were therefore restricted to managing associated bone pain with analgesics and anaemia with blood transfusions.
At the point of referral for occupational therapy (OT) input George had been rapidly deteriorating in daily activities and function as a result of his pain and fatigue. However, he was determined to ‘get moving again’ and the OT worked with him to achieve this goal.
Receiving invaluable support from the medical team over the use of pre-movement analgesia, the OT was also able to work jointly with the acute care physiotherapist to consider each pain site when establishing a movement strategy.
OT intervention for pain management and mobilisation included:
- Minimising discomfort at rest, using a profiling bed and pillows for positioning. It was particularly important to prevent excessive rotation of the hip joint, which often increased pain
- Devising the best transfer technique. For George this was a standing transfer using a frame. Use of a sliding board or rotating standing frame was precluded because of his shoulder pain
- Specialist seating advice and equipment to enable him to sit out of bed for meals and social activities.
Over six months George had several additional hospital admissions. However, as he recovered from each episode he remained focused on the future and any functional improvements that could be made.
Through continuity of service in both hospital and community, the OT was able to work with George to achieve his ultimate goal of getting to and from the bathroom safely and independently despite his painful, fractured hip.
Unfortunately, the overall pattern was one of decline. Ruth focused on caring for her husband at home, which required on-going support to cope with continually changing circumstances. She was reluctant to accept any formal help with her caring role, seeing the suggestion that she needed this help as implying she was not providing good care.
The occupational therapist was able to recognise that Ruth might be using the caring role as a coping mechanism and was able to use this experience in later practice when broaching the subject of needing to increase care support. Reactions to these suggestions can vary and the topic needs to be raised with thoughtfulness and sensitivity.
*All names have been changed to protect confidentiality
Author Beverly Chilson, Macmillan Occupational Therapist”
The case study illustrates that those planning end of life care, reviewing progress, and those providing the hands on support need to be sensitive to ever changing needs, and be aware of the range of additional support which can be brought to bear to cope with changes, and how to access those services. During quality assessment or consultancy projects, examples can too often be seen of service users with end of life needs which are not being met because of the lack of knowledge, or lack of observation skills, of those currently providing care and support. In these cases, the care plan review process has failed. The review needs to be carried out by a person with a wide skill base. The reviewer must be able to observe and understand the presentation of the service user and carry out effective review assessments, understand and adequately interpret the daily records of care delivered and reactions, understand the likely progress of the underlying condition of the service user, be aware of the sources of specialist advice available, and be aware of the full range of additional support which can be called upon to meet current and predicted needs. In addition to knowing what is required and where to obtain it, the care planner needs to know how to contact the providers and have sufficient authority and confidence to overcome barriers. These skills require commitment, specialist training and knowledge, an eye for detail, and an assertive personality. End of life care co-ordination therefore needs to be controlled by a person whose personal and specialist skills are significantly higher than usual.
The complexity of co-ordinating end of life care is possibly its greatest challenge, and constant vigilance and testing is required to ensure adequacy. For example, a recent real incident illustrates the possible pitfalls. In the author’s locality, syringe driver management was shared between two organisations, switching responsibility at 6pm. The family of a service user with a syringe driver noted at 5.15 pm a problem with the driver causing the service user distress, and rang the service providing management at that time, to hear a recorded message that the office was shut and to ring the post 6 pm service. In ringing the other service, the recorded message stated that the office opened at 6. At some undefined time, one service had changed its opening times, and no-one had noticed the service gap which was thereby created.
The lesson for services providing, or planning to provide, end of life care, is that in addition to all the staff involved being appropriately trained, the service needs to be co-ordinated by a highly capable and skilled person, with the ability to manage detail and cut through organisational inadequacies to achieve a quality outcome for the service user.
For those with a need for more information urgently, sources of further information are:
NHS National End of Life Care Programme.
Social Care Institute for Excellence (SCIE) Dementia Gateway.
The Gold Standards Framework.
The Marie Curie Palliative Care Institute, Liverpool