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Parkinson's disease - Management
How can I support palliative care for people with Parkinson's disease?
- The palliative care requirements of people with Parkinson's disease should be considered throughout all phases of their disease.
- See the recommendations for the management of pain in people with Parkinson's disease.
- However, identification of the palliative phase may indicate that a more comprehensive range of palliative care services will be needed to control symptoms (including pain) and to meet the needs for personal, social, psychological, and spiritual support.
- People with Parkinson's disease are in the palliative phase when:
- They are unable to tolerate adequate dopaminergic therapy and they are unsuitable for surgery, or
- They have advanced comorbidity (such as severe dementia).
- Palliative care must address:
- Physical problems, including pain, breathlessness, anorexia, immobility, and constipation.
- When the person becomes immobile, high priority should be placed on assessing the risk for pressure ulcers, and managing any ulcers that do develop.
- When the benefits of dopaminergic drugs have been lost or adverse effects such as hallucinations become intolerable, it may be necessary to withdraw drugs; this should be done by (or on the advice of) a specialist, with the consent of the person and their carers.
- Social problems, including loss of employment, role change, and fear for dependants.
- Psychological problems, including depression, fear and anxiety, uncertainty, and guilt.
- Existential problems: religious, non-religious, the meaning of life, and 'why me?'.
- Stress on carers:
- Timely respite care can support carers and delay admission to a care home.
- End-of-life issues:
- People receiving palliative care should be supported so that they can live in, and die in, the place of their choice.
- The following CKS topics, although they apply to palliative cancer care, may also be helpful for managing particular problems in people with Parkinson's disease:
Clarification / Additional information
- Rotigotine, a transdermal dopamine agonist, or apomorphine injections or infusion, can be considered if the person is unable to tolerate oral medication. These should only be initiated by a specialist.
Basis for recommendation
These recommendations are in line with a guideline produced by the National Institute for Health and Clinical Excellence (NICE), Parkinson's disease: national clinical guideline for diagnosis and management in primary and secondary care [National Collaborating Centre for Chronic Conditions, 2006], as well as the quality standard for palliative care in the National service framework for long-term (neurological) conditions [DH, 2005].
- Recommendations about the need for risk assessment and management of pressure ulcers are derived from guidance from NICE and the Royal College of Nursing [NICE, 2005; RCN, 2005].
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