Prolonged disorders of consciousness: Practice described by palliative and rehabilitation physicians

• 63.5% of survey respondents cared for people with prolonged disorders of consciousness at the end of their lives • 44% of clinicians withdraw clinically assisted nutrition and hydration in the patient’s usual place of care • Where a decision to admit is taken, 43% will admit to a hospice inpatient unit. • 87% of survey respondents do not arrange long line or central intravenous access prior to withdrawal of CANH. • In 81% of cases there was no difficulty with symptom management National clinical guidelines for the management of prolonged disorders of consciousness (PDOC) following sudden onset brain injury were updated in 2020. Since then, clinical experience has grown. This paper reports on current practice. A questionnaire was developed, tested and sent to rehabilitation and palliative medicine specialists, via British Society of Physical and Medical Rehabilitation and Association of Palliative Medicine. Anonymised responses were analysed. 63.5% (n=61) of respondents were involved in the care of people with PDOC, two thirds working in palliative medicine. 44% of clinicians withdraw clinically assisted nutrition and hydration (CANH) in the patient’s usual place of care. Where a decision to admit is taken, 43% will admit to a hospice inpatient unit. 87% of respondents do not arrange long line or central intravenous access prior to withdrawal of CANH. Ninety-five per cent of clinicians prescribe opioids and 92% prescribe sedatives for prn use or directly convert regular medications to a continuous subcutaneous infusion when withdrawing CANH. Most clinicians titrate according to need. In 81% of cases there was no difficulty with symptom management on withdrawal of CANH. Forty-eight per cent of respondents worked with staff who expressed a conscientious objection to CANH, 40% in palliative and 66% in rehabilitation medicine. National guidance should be updated to reflect clinical practice with regard to place of care, the effectiveness of a subcutaneous route and the use of proportionate symptom management.