"Hem's Law": A Push for Humane End-of-Life Choices in Advanced Dementia

Angie List is advocating for a new legal provision, dubbed "Hem's Law," inspired by the difficult death of her 79-year-old mother, Helen Lister, from late-stage Alzheimer's disease. List described her mother's passing as slow and prolonged.

The Difficult Passing of Helen Lister

Helen Lister, diagnosed with Alzheimer's in 2023, experienced significant decline in her final weeks. She weighed approximately 24 kilograms and suffered from dysphagia (difficulty swallowing) and cachexia (wasting syndrome). Her mouth remained dry despite attempts to moisturize, and she developed pressure sores.

Palliative care staff provided hydromorphone for pain and sedatives, but List observed her mother would grimace during repositioning, indicating the medication's effectiveness was not complete.

Understanding "Hem's Law"

"Hem's Law" proposes a standalone legal provision, distinct from voluntary assisted dying legislation. It would permit a family member or legal representative to choose a peaceful and humane death for a person with dementia, subject to specific criteria.

List states this is a "quality-of-death judgment," aimed at preventing protracted and distressing deaths.

Proposed Criteria for "Hem's Law"

The proposed criteria for "Hem's Law" include:

• Loss of swallowing confirmed by a doctor or speech pathologist.
• Certification of an active dying phase by two independent medical practitioners, confirming comfort care as the only remaining pathway.
• Written confirmation by the decision-maker, with independent legal and medical witness.

The Rationale Behind the Campaign

List's campaign stems from a perceived lack of public education regarding the advanced stages of dementia, particularly how the disease impacts the brain-body connection, leading to neurological challenges and prolonged dying processes such as starvation due to the inability to swallow.