Integrating palliative care for patients with Parkinson disease
[NB1] [NB2] [NB3]
Collaborate with, and define the roles and responsibilities of, clinicians, services, families and carers. Consider whether or when to refer to a specialist palliative care service—see Who provides palliative care?.
Educate the patient and their family about the prognosis, if appropriate—see Overview of communicating with and supporting patients with palliative care needs.
Discuss the patient’s preferences, values and goals of care initially and continue to review.
Supporting early and ongoing advance care planning, including the appointment of a substitute decision-maker, and discussion of resuscitation and hospitalisation.
Identify and support emotional and psychosocial needs.
Anticipate and plan for transitions across various settings, and acknowledge patient and family preferences—see Where is palliative care provided?.
Create and maintain an individualised disease management plan to address current health problems and those expected to arise (because Parkinson disease progresses and symptoms can become refractory to treatment):
- Manage symptoms and complications, including creating a symptom management plan.
- Plan an approach to modify or stop treatments as the illness progresses (see Decisions about withdrawing or withholding treatment in palliative care), particularly drug changes for when the patient can no longer swallow—see Rationalising drugs for Parkinson disease in palliative care.
Support the family and principal carer.
Support patients and their families and carers experiencing loss, grief and bereavement.
Prepare for the last days of life.
NB1: It is often appropriate to introduce palliative care from the time it is recognised that a patient has progressive, life-limiting illness; palliative care can be continued alongside disease-orientated management for Parkinson disease.
NB2: Aspects of palliative care may need to be introduced or revisited depending on patient and carer needs, and the clinical context. The approach and priorities of care often change with the phase of the illness.
NB3: Caring for patients with palliative care needs can be personally and professionally demanding—for further information and advice on building resilience and avoiding burnout, see Healthcare professional wellbeing in palliative care.
It is often preferrable to introduce palliative care early in patients with Parkinson disease; cognitive decline, communication difficulties, physical dependence and carer distress are common features as the disease progresses. For general benefits of introducing palliative care early, and considerations to inform the approach, see Introducing a patient to palliative care.
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drug-resistant motor symptoms
falls with fractures
stage 3 or 4 pressure ulcers
progressive decline in physical status
continuing weight loss
recurrent infections
cognitive impairment
swallowing problems
episodes of aspiration pneumonia
NB1: Also consider general factors when deciding if a patient requires palliative care; see Introducing a patient to palliative care.
NB2: Each patient requires individual evaluation; when possible, there should be ongoing liaison with a specialist neurologist.
NB3: For more detailed information on indicators, see Akbar U, McQueen RB, Bemski J, Carter J, Goy ER, Kutner J, et al. Prognostic predictors relevant to end-of-life palliative care in Parkinson’s disease and related disorders: a systematic review. J Neurol Neurosurg Psychiatry 2021. URL.