Within teams, there may be different ways of coping with the stresses of work and there may be stressors within the team itself
Role overload – with increasing workload.
•
Role con fl ict – with team members in con fl ict regarding both the work itself and
•
ways of coping with the work and stressors.
Team con fl ict – with communication issues within the team as described above.
•
Issues of coping with dying and death – as the close connections with the patient
•
and family can cause stress to all involved [ 18 ] , and there may be issues with different team members fi nding the issues relating to being clear as to boundaries with patients and their families vary, causing con fl ict.
Multiple loss – there may be issues of facing multiple losses when caring for
•
people with progressive neurological disease – the patient themselves face mul- tiple losses of mobility, speech, swallowing , and cognition – and team members are closely involved in these losses, and an accumulation of grief when patients die, which may lead to depression.
There is a need to ensure adequate time and commitment to consider the issues of stress and loss. These are often missed, and in the continual workload, the pres- sure on team members is minimized and not always appreciated, with long-term sequelae of team pressures, discord, and potentially burnout and illness. Within teams, there is the need to have clear opportunities for discussion and acceptance of these stresses. Team members may need help and continuing support. Clinical supervision may allow the issues to be recognized and addressed in a positive way.
However, there are often personal issues that in fl uence the reactions and abilities of people to cope with work and team pressures. The approach will be individual, accepting the interaction between the team and personal issues and stresses.
Every team member has a responsibility to fi nd their personal strategies for cop- ing with the stresses they face. Within teams, there is the need to ensure that these needs are recognized, time is allowed to express emotions and to debrief if neces- sary, clinical supervision allows opportunities for wider discussion and support, and all team members are aware of the needs of other members of the team so that there can be mutual support and growth.
Conclusion
The involvement of a wider team, with many different disciplines all adding their own knowledge and expertise to the person’s care, can improve patient and family care. For a person with a progressive neurological disease, facing the end of their life, this approach is even more important.
The multidisciplinary approach will enable the correct assessment of the patient and family, leading all the team members providing their own expertise and care in an effective and coordinated approach. The aims and plan of care can be communi- cated to all concerned, and common goals can be agreed with other teams involved in the care. The complexity of care that may be required for a patient with neuro- logical care may only be provided by this coordinated approach. Moreover, the team will also be able to support not only the patient and family but the team members themselves, when facing the stresses of coping progressive disease and potential con fl ict, and thus achieve higher satisfaction in their roles and continue to develop and improve the care they offer.
The multidisciplinary team approach will allow all aspects of the patient’s needs and care to be considered and allow involvement of the most appropriate profes- sional help at the most appropriate time for the patient and family. A highly per- forming team will enable the patient and family to maximize the care that can be provided and to live as full a life as possible.
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133 D. Oliver (ed.), End of Life Care in Neurological Disease,
DOI 10.1007/978-0-85729-682-5_7, © Springer-Verlag London 2013
Abstract People with progressive neurological disease face many challenges and changes in their condition – both physical and cognitive. Advance care planning allows the person to make their wishes known, while they are still able to do so. If they are not able to make decisions for themselves later in the disease progression, due to loss of communication or loss of capacity due to cognitive changes, those involved in their care can be aware of these wishes and plan care appropriately. In this way advance care planning allows clearer decision-making for all concerned – the person with the neurological condition, their family and carers, and the profes- sionals involved in their care.
Keywords Capacity • Advance care planning • Decision-making • MCA • ADRT
S. Chapman
Director of Policy & Parliamentary Affairs , The National Council for Palliative Care ,
The Fitzpatrick Building, 188-194 York Way , London N7 9AS , UK e-mail: [email protected]
Advance Care Planning
Simon Chapman
Case Vignette
Albert Peters was a 66-year-old married man, who had been an engineer.
After retirement, he became more breathless and felt unwell. A chest x-ray was normal, and he put all the changes down to “old age.” When he developed pain in his knee, an arthroscopy was arranged. However, after the procedure, he did not start to breathe again and was transferred to the intensive care unit.
He was found to be in respiratory failure and was unable to breathe by him- self. A tracheotomy was performed, and he was dependent on a ventilator to keep him alive – when any activity was undertaken to clean the tube or adjust the machine, he became very breathless and distressed. During this period, a diagnosis of motor neuron disease was made.
Introduction
As people living with neurological conditions approach the end of life, whether they die with or from their condition, it is important that the neurological condition is understood and managed appropriately. Many of those people will experience impaired cognition and ability to communicate, in addition to the physical impact of their condition. It will also be possible, in many instances, to anticipate the types of choice and decisions that might need to be made in respect of their daily living treat- ment and care as they approach and reach the end of life.
Embarking upon a process of advance care planning while the person retains capacity, so that they can discuss and document their preferences and choices about their future care, is therefore an essential step if they are to receive high-quality person-centered care that enables them to live and be cared for in the place of their choosing until the end of life. It is a vital part of delivering care based on the prin- ciple “nothing about me without me.” Moreover, commitment to helping people plan their future care, whatever their future mental capacity, contributes signi fi cantly to enhancing their dignity.
Hence it is unsurprising that extending advance care planning so that it is offered to all people identi fi ed as approaching the end of life is seen as a core component in national and local strategies to develop end of life care [ 1 ] .
Following admission to the hospice, to plan discharge home, he talked openly of his poor prognosis and of dying. He had been in hospitals for several months and was determined to go home and stay at home. He made it clear that he would prefer to die at home than be readmitted to hospital. Before his discharge, hospice staff discussed with Albert and his wife what he wanted for the future. He was very clear that he did not want to be readmitted to hospital, nor receive cardiopulmonary resuscitation, or continued ventilation if his con- dition deteriorated, but instead wanted to remain at home and receive care to keep him comfortable. It was decided that he would complete an advance decision to refuse both CPR and ventilation. He realized that this could result in his death. He completed an advance decision, which was signed and wit- nessed, and complied with all the requirements of the Mental Capacity Act and was discharged to his home.
He enjoyed his time at home and was able to go out to see his grandson play football and his granddaughter dance in a show. His condition deterio- rated one morning, and as he had wished, he was given an injection to relieve his distress and was not transferred to hospital and died at home later that day with his family with him.
His family were pleased that his wishes had been upheld and felt that the completion of the advance decision had allowed them all to discuss the issues
Advance care planning is not only seen as good practice and an important policy tool to improve care but, in some countries, is supported by legislation. For exam- ple, in England and Wales, the Mental Capacity Act 2005 (the MCA) [ 2 ] , contains provisions about:
Assessment of capacity
•
Supporting people so that they can make decisions for themselves where
•
possible
Best interests decision-making, if a person lacks capacity to make a decision
•
themselves
Advance decisions to refuse treatment
•
Proxy decision-making through lasting power of attorney
•
A duty to consult those close to the person lacking capacity when assessing their
•
best interests
This importance of this legislative framework is that it lifts advance care plan- ning beyond the realm of good practice to the sphere of rights, enforceability, and compliance. It protects both people who lack capacity to make a decision and those who then have to make a decision on their behalf. It means that if people decide to identify their preferences and choices, services and care providers have to respond;
they cannot be ignored. Providers of health and social care have an obligation to ensure that their staff have been appropriately trained in communication and advance care planning, as part of ensuring legal compliance.