Advance care planning for patients with advanced neurology diseases

Advanced neurology diseases including motor neuron disease (MND) are usually progressive life-limiting illness and could be devastating for patients, families and caregivers. Although medical technologies, such as enteral feeding and non-invasive ventilation, may prolong life expectancy of the patients, their utilization prompts important ethical questions in regard to their quality of life (QoL). Little attention had been paid on how ACP practice would practically help with patients suffering from different neurology diseases. We are unaware of any published studies on ACP practice among patients with different neurology diseases. In our study, we assessed end-of-life (EOL) care preferences, documentation, and communication in patients with various types of advanced neurology diseases.

This was a retrospective chart review of all patients referred to the neuro-palliative care team (NPCT) in a local acute hospital in Hong Kong. The study was approved by the institutional review board of the University of Hong Kong. NPCT consultation was hand abstracted from the electronic health record if there was a subspecialty palliative care (PC) consultation note during the study period. Hand abstraction of data also included any content related to advance care planning (ACP) [advance directive (AD), resuscitation order, ventilator support, artificial feeding, patient wishes, legacy].

For patient who signed AD, items including cardiopulmonary resuscitation (100%), mechanical ventilation (100%), artificial nutrition and hydration (80%) were mentioned more frequently than other EOL interventions. For patients who had ACP but without AD, the most common diagnosis is bad stroke (60%). Place of death, artificial nutrition and hydration were most mentioned EOL interventions.

EOL decision making in patients with advanced neurology disease is often delayed. This study showed that MND patients are readier to discuss their EOL issues and signed their AD. The NPCT can play a valuable role in EOL discussions in patients with advanced neurology diseases under collaboration between the PC and the neurology teams.