What is a living will and why should you have one?

You have probably, at some time or other, visited a hospital or nursing home to see a relative in irreversible dire health, who perhaps no longer knows who you are. After leaving, you may have turned to your partner or your partner may have turned to you, saying: “Promise you will never let that happen to me.”

What might work better than to extract a fear-driven promise would be for all of us to acquaint ourselves with the Advance Healthcare Directive (AHD).

Sometimes known as a “living will”, the AHD stipulates what procedures, such as resuscitation, you do not want performed if and when you no longer have the capacity to refuse treatment. I was reminded of its importance during a discussion in Dublin last autumn at the Margaret Chamberlain Memorial Lecture – a healing occasion, I would say – in Our Lady’s Hospice, Harold’s Cross.

Chamberlain’s daughter Lucy, 22, had been in a persistent vegetative condition following minor surgery in a Dublin hospital (which cannot be named) in 1972. According to Chamberlain, the family never got an explanation as to what had gone wrong. An institution (which also cannot be named) where she spent almost all her subsequent life refused to allow her die and treated many infections that could have ended her life.

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[ The events may be far away, but the feelings of hopelessness and grief are with us ]

Eventually, she was moved to Our Lady’s Hospice, with the family believing she would be allowed to die. However, this was not so. The family went to the High Court, which ruled in 1995 that treatment could be withdrawn, giving her – as it was widely described at the time – the right to die. The hospice and the Attorney General appealed the decision, which, however, was upheld by the Supreme Court.

She died peacefully at her mother’s home – the hospice had asked that she be removed from its care – in Dublin, attended anonymously by a doctor and nurses who feared repercussions from their professional bodies.

The memorial lecture was able to take place after a ban on naming the family and the hospice was lifted following a joint application by both to the High Court (though Margaret Chamberlain had already named herself and her daughter in a letter in The Irish Times in 2006).

The lecture was jointly organised and was, as I mentioned above, healing in itself, as was an apology made to the family on that occasion by Dr Stephen Higgins, consultant in palliative medicine, on behalf of the hospice.

He wished the hospice had been “more mindful of the difference between what we could do medically and what we should do”. Of those who had been involved in her care and whom the hospice had been able to contact, “all expressed sadness and regret at what had transpired”.

It all underlines the importance of Advance Healthcare Directives, for which a legal framework was established last April, though they had been recognised before that.

As the Decision Support Service (established by legislation in 2015) explains on its website, the Advanced Healthcare Directive “lets you set out your wishes regarding medical and healthcare treatment in case you are unable to make these decisions in the future. Importantly, it lets you write down any treatment you do not want ... Doctors and other healthcare professionals must consult your advance healthcare directive if you lose the ability to make a treatment decision.”

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Irish Medical Council guidelines, 2024, say an Advance Healthcare Directive “is a legally binding document” and that it “must be respected, as long as it clearly sets out the treatment decisions and circumstances in which it should apply” and complies with the legislation.

“It is important to note,” the Alzheimer Society of Ireland says on its website, “that if you do not discuss or make plans in advance of your care that your family do not have the authority to make healthcare decisions on your behalf”.

If you want to know more about Advance Healthcare Directives, you’ll find a lot of information on the websites of the Irish Hospice Foundation, the Decision Support Service, the Alzheimer Society of Ireland and on citizensinformation.ie.

• Padraig O’Morain (Instagram, Twitter: @padraigomorain) is accredited by the Irish Association for Counselling and Psychotherapy. His books include Kindfulness – a guide to self compassion; his daily mindfulness reminder is available free by email (pomorain@yahoo.com).