Care at the end of life

Abstract

Good end of life care always requires preparation, but this is especially so in neurological disease, where the signs of impending death can be unclear and there may be a substantial period of mental incapacity. A sensitive process of advance care planning can enable both patient and family to face what lies ahead and makes choices about what style of care would be preferred. It also facilitates both psychological and spiritual preparedness and also an awareness of what symptoms are likely to occur and how they can be managed. Achieving all this needs cooperation and mutual learning between neurology, palliative care, and rehabilitation, in addition to support for long-term care staff who may be involved. Symptoms, which will center around issues of breathing, restlessness, hydration, and pain, have to be anticipated and appropriate drugs made available for their management. Ventilation, whether noninvasive or via tracheostomy, deserves careful consideration with respect both to starting it and to when and how it may be withdrawn. The importance of good care at the end of life cannot be overestimated, as this phase of the illness leaves a powerful impression in the minds of those who were close to the patient and is influential in shaping their attitudes both to illness and to healthcare.