Improving end of life care in neurological disease An ...
Improving end of life care
in neurological disease
An executive summary
• Neurological disease encompasses many conditions, each with differing
presentations, symptoms and complexities
• People with advanced neurological disease often have an unsatisfactory last year or
so of life – they may not have a “good death” or die where they would have wished
• People who are housebound cannot attend clinic but are seldom assessed at home
• Pain and other symptoms are not adequately assessed or treated
• Signs that end of life care (EoLC) is now appropriate are not recognised
• Lack of ongoing clinical monitoring and discussion results in the person and their
carers not being involved in planning future care. Without sensitive discussion, it
remains unknown how or where the person would like to be treated if, for instance,
they get a serious infection. Medical interventions, including those that may be life-
prolonging, may be started without full discussion with the person
• An acute problem like aspiration or sepsis results in the person being hospitalised for
aggressive life-prolonging treatment, regardless of preference
• Frequent unplanned hospital admissions in the last year of life are common.
What might make neurological diseases different?
• Long and unpredictable duration of disease and wide range of symptoms
• Sudden death (eg motor neurone disease/multi-system atrophy)
• Lack of predictable course, or fluctuating course (eg Parkinson’s disease)
• Complex multi-disciplinary care (eg multiple sclerosis)
• Specialist treatments (eg deep brain stimulation in Parkinson’s disease)
• Neuro-psychiatric problems (eg behavioural and cognitive changes), affecting
communication and care planning
• Rapidly advancing diseases may need palliative care early in the progression
• Many people die with - but not from - their neurological condition.
What can we do to improve the situation?
People with neurological disease have highlighted how end of life care can be improved.
• Listen to what the person has to say about their own problems, strengths and
• Adequately assess their current problems - and look for viable solutions
• The multi-disciplinary team should manage symptoms as part of holistic care. This
improves the individual’s quality of life and can ease the burden on the family, both
before and after death
• Consider advance care planning (ACP), including advance decisions to refuse treatment
and lasting power of attorney, and sensitively discuss with the person and carers their
future care options. Clinicians can initiate open discussion around EoLC - eg when
talking about potentially life-prolonging treatment
• Recognise that the person could die soon, justifying a more palliative approach
• Considering the extent of disease, and rate of decline, would you be surprised if
this person died in the next year? If so, consider introducing ACP and initiate
discussions about managing the time left to them.
Possible triggers to considering a palliative approach include:
• Swallowing problems
• Recurring infection
• Marked decline in physical status or weight loss
• First episode of aspiration pneumonia
• Cognitive difficulties
• Significant complex symptoms.
Communication with the patient/carers and between the care team
Communicating successfully with someone who has a neurological disease is essential so
that the individual understands as much as they want to know about their disease
(including possible further symptoms) and can make informed choices about their future
care as part of a genuine dialogue.
People who have experienced significant cognitive decline may not be able to speak well,
but they may still be able to convey what is important to them.
There should be a multi-disciplinary team approach from the early stages of most
neurological conditions. Co-ordination of care is essential, with a clear system for the
person to access help or advice when needed.
Assessing people with a neurological disease can be time-consuming, owing to
communication or cognitive changes. However, it can establish trust and reduce
Anticipating and managing the dying phase
The recognition of dying in neurological disease can be difficult. The onset of the dying
phase can be signalled by:
• Systemic sepsis
• Reduced consciousness level without reversible cause and distinct from cognitive
impairment, which may be longstanding
• Pressure sores.
Medication should be available in the person’s home, to be given subcutaneously if
required. This may include medications for the relief of pain, dyspnoea, agitation, stiffness
and secretions (including morphine sulphate, midazolam, glycopyrronium bromide or
When caring for patients nearing the end of their life at home, it is important, whenever
possible, to talk sensitively with the person and family about their preferred place of death.
The person and their family might not always agree, but discussion and understanding can
lead to plans to prevent emergency hospital admission.
Following the death of the person, carers – both within the family and professionals – may
have many ambivalent feelings; sad at the loss but relieved that the burden of caring has
eased. All involved need time to talk about these issues and some may require more formal
counselling and bereavement support. After a death it can be useful for staff to meet as a
multi-professional group to reflect on the care provided to that person and their family.
The impact of neurological conditions can be stressful for carers, as well as the individual.
The End of Life Care Strategy (Department of Health 2008) emphasised that all health and
social care staff should have the knowledge, skills and attitudes to deliver care at the end
Further information and the full report
The full version of this document, together with a “Further Reading” list, can be found on
the National End of Life Care Programme’s website at http://www.endoflifecareforadults.
End of life care pathway for neurological disease
Diagnosis of neurological Supportive care input
condition Palliative care input
Future care discussion Proactive management plans
Place of care
Wishes and preferences
Some conditions may
have specific triggers
that may indicate end Generic triggers/transition Identification of key worker
of life is approaching. point Add to palliative care register
Some of these are Marked decline in Discuss at MDT
identified in the full physical status DS1500 (use of ‘surprise’
publication (see Swallowing difficulties question)
page 3). Significant weight loss Detailed assessment of needs
Recurring admissions Fax out-of-hours providers
Clinicians need to Frequent infection Assess for continuing health
consider what these
care (use fast track tool if
may be in the
Mental Capacity Act/best
motor neurone disease,
multi-system atrophy, End of life care
supranuclear palsy, Diagnosis of dying - MDT
Huntington’s disease, discussion
neuromuscular Exclude reversible causes
weakness and Use a recognised last days of
inherited dystrophies life pathway tool
Review existing medication
Care in the last days Convert meds to non-
of life oral/proactive
Care after death Supporting information
In association with