Sense of peace to be guided by patient's decisions

Madam Tan says: “The main thing is, if I can’t move any more, I want to go.

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I don’t want to burden my daughter.”She adds: “I know that if I’m happy, my children are happy.”

Ms Tay’s mother Carol was diagnosed with a motor neurone disease in 2023. An outgoing person who played the guitar and ukulele and volunteered with older people, she insisted on staying as physically and socially active as she could.

She met friends for ice cream.

She went on walks with her husband and learnt new ways to move - swinging her hips - as her neuromuscular coordination failed.

In February, she and her husband decided to go to Spain for a holiday. Madam Tay suffered a cardiac arrest during the trip, had to be medically evacuated, and was hospitalised in Singapore for a week.

The decision to remove her from life support was eventually made based on the AMD she filed years ago. She died at age 63.

Ms Tay, a financial adviser, is glad that her mother could live life on her own terms. It gave her a sense of peace to be guided at the end by her mother's decisions.

“It’s important to have documents like the AMD in place,” she says. “It gives direction to the caregivers when patients are unable to speak for themselves.”

DIFFICULT BUT NECESSARY CONVERSATIONS

Ms Grace Yong, senior medical social worker at Assisi Hospice, works with people receiving hospice care at home. Part of her job is to initiate and facilitate conversations around their preferences for care, such as what functions they would want preserved and what they are willing to let go of - for example, independent feeding.

She says: “Patients and their families want to protect one another, which makes certain conversations hard.”

Doctors tell ST that when families do not have such conversations, people end up struggling with guilt over making care decisions when a loved one can no longer speak for himself or herself.