A sobering reminder that having an Advance Decision isn’t always enough

This article was originally posted on 11 June 2025

Advance Decisions to Refuse Treatment (ADRTs), also known as Living Wills, are designed to give individuals control over their medical care, even when they lose the ability to speak for themselves. In theory, once written and properly signed, these documents should be honoured without hesitation.

But a recent article on Mental Capacity Law and Policy exposes just how fragile that protection can be in practice.

Read the full article here.

What happens when wishes aren’t followed?

The article centres on a case in which an NHS Trust failed to follow a woman’s legally valid Advance Decision. Although her document clearly refused life-sustaining treatment under certain conditions, hospital staff acted as though it didn’t apply, or worse, as though it didn’t exist.

The woman had lost capacity by the time she arrived at the hospital. Still, the decision to continue treatment was made without properly checking whether her Advance Decision was both valid and relevant to her condition. The result? She received interventions she had specifically declined.

The Trust later acknowledged that they had made an error. However, the damage to patient trust, legal integrity, and personal dignity had already been done.

The key problems highlighted.

This case brings several systemic issues to light:

1. Lack of visibility

Healthcare workers couldn’t easily locate or confirm the existence of the Advance Decision in the patient’s records. When time is critical, that delay often leads to default treatment.

2. Confusion over applicability

Some clinicians questioned whether the Advance Decision applied to the patient’s current condition, and instead of pausing for clarification, they pressed ahead with treatment.

3. Fear of liability

Without clear policies and training, some professionals fear being held accountable for not treating, even when the law says they must honour a refusal.

A personal example: When systems fail, people suffer

Imagine for a moment that a man named David has completed an Advance Decision. It states clearly that if he falls into a persistent vegetative state, he does not want to be kept alive artificially.

Years later, David has a sudden accident that leaves him unconscious. Emergency services arrive, and despite their best efforts, they find no documentation on him. The hospital admits him, and machines take over his breathing and feeding.

By the time his family manages to locate and share his Advance Decision, days have passed. David’s stated wishes have already been ignored, and there’s no undoing that.

Why stronger systems matter

This isn’t just a cautionary tale. It’s a wake-up call. An Advance Decision is only as powerful as the systems that recognise and respond to it.

The law may be clear, but human error, digital gaps, and institutional hesitation can render even the most carefully worded document ineffective at the moment it matters most.

Protecting your choices with My Medical Choice

At My Medical Choice, we believe your medical preferences should never be buried in a drawer or lost in a system that doesn’t know where to look.

That’s why we’ve created a fully integrated approach:

Legally robust Advance Decision Notices, written in line with the Mental Capacity Act
Instant digital access for paramedics, hospitals, and your nominated contacts
Emergency ID cards and wristbands that alert responders on the spot
Secure medical storage so your wishes are always one click away
Real-world support, not just a form

When your voice can’t be heard, your wishes can still be clearly, securely, and legally expressed.

When an Advance Decision Is Overlooked: A Wake-Up Call for Us All