Designated Healthcare Professionals

Capacity to make an advance healthcare directive

Lisa is a middle-aged woman with a moderate learning disability who requires ongoing medical care for heart disease, chronic lung disease, and epilepsy. She lives at home with her parents and sister and attends a day service during the week. Lisa can make day-to-day decisions independently but requires support with more complex decisions particularly around her healthcare. This is provided informally by her family, especially her sister, as well as relevant healthcare professionals.

Due to the progressive nature of her medical conditions, Lisa has had increasingly frequent hospital appointments and medical interventions. Following a recent hospital admission to treat pneumonia which included a short period requiring ventilation in the intensive care unit, Lisa makes it very clear to staff in the day service that she does not want to return to the intensive care unit. A discussion between Lisa, her healthcare professionals, her sister, and the rest of her family confirms that her physical condition is deteriorating. Lisa is supported in understanding what this means. She is clear that she wants to make sure that she is not admitted to intensive care for ventilation again.

An advance healthcare directive is recorded by video which is transcribed and signed on behalf of Lisa by her mother and two witnesses. Lisa formally nominates her sister as her designated healthcare representative. In the advance healthcare directive, Lisa makes it clear that she understands that she may die because of refusing treatment and says that she does not want treatment in this situation. This statement is recorded as part of the advance healthcare directive.

Five months later Lisa becomes acutely unwell again and is transferred to hospital; at this stage she is drowsy and unresponsive. Lisa’s parents feel strongly that Lisa has been doing well since her previous hospital admission and would like her to be transferred to intensive care if needed. Lisa’s sister is of the view that Lisa does not want this, and as her designated healthcare representative requests that Lisa should not be admitted to intensive care. The treating clinician reviews the advance healthcare directive and following discussion with Lisa, her parents, and sister he does not admit Lisa to intensive care but instead requires that her care is maintained to ensure that she is comfortable. Lisa dies peacefully three days later.

Comment: This vignette shows that a person who has an intellectual disability or needs support to make decisions is not a barrier to that person making a legally binding advance healthcare directive. It also shows how support can operate and ways technology can be used to assist in the drawing up of an advance healthcare directive. The vignette also shows that the advance healthcare directive is legally binding, even where some family members do not wish it to be given effect.

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