Objective: To establish whether choking is a frequent cause of death in Parkinson’s Disease (PD), if this is a feared consequence of PD in patients/caregivers and how choking could be managed if it occurs as a terminal event.

Background: Dysphagia is common in PD but the prevalence of choking as a terminal event or its optimal management is unclear. We reviewed this topic after a patient with atypical parkinsonism disclosed a fear of choking as a terminal event and wished to discuss management strategies as part of advance care planning.

Method: A focussed literature search was undertaken using EMBASE, Medline, Google Scholar and ClinicalKey. The management of the case was discussed locally at a movement disorder multidisciplinary team meeting (MDM).

Results: There is minimal published evidence regarding the frequency of choking as a terminal event in parkinsonism or PD, despite the increased risk of dysphagia and expressed fear of choking from patients and caregivers. A post-mortem study has suggested that asphyxiation is a recognised but uncommon cause of unexplained sudden death in patients with PD. There is no consensus regarding the management of terminal choking. Suggested strategies include risk reduction by optimisation of food and fluid textures with speech and language therapy input.

Conclusion: We propose that there may be a role for management of terminal choking in a similar way to terminal haemorrhage, with consideration of the appropriateness of “crisis sedation”. The main features of this strategy include a reassuring presence with the patient, basic first aid if appropriate and consideration of pharmacological management with benzodiazepines. A pharmacological approach raises ethical factors including whether informed consent can be obtained and the risk of inadvertently administering sedatives for a non-terminal event, which may be difficult to identify at the time. We anticipate that not all patients will want to discuss the risk of catastrophic events and therefore the patient cohort should be carefully identified, with an individualised approach as part of advance care planning conversations. In the case of this patient, the recommendation from the MDM was made for a prescription of buccal midazolam. We have produced a local management guideline suggesting when to consider initiating advance care planning conversations about terminal choking and which management strategies could be considered.

References: Matsumoto H et al, Sudden death in Parkinson’s disease: A retrospective autopsy study, Journal of the Neurological Sciences 343 (2014)

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