How one young patient chose clarity before a crisis

Published on 13 March 2026

At 27, Ms Leong faced a frightening diagnosis. Advance Care Planning helped her put fears into words and took pressure off her family if she could not speak for herself. 

Ms Leong was 27 and newly engaged when she first sat down to talk about her future care preferences.

One week after her engagement in May 2024, she was diagnosed with systemic lupus erythematosus and told she faced a one-in-two chance of needing dialysis because of kidney involvement.

The prospect scared her. “I hated needles, and the thought of going several times a week terrified me,” she said.

Treatment later stabilised her condition, but the diagnosis jolted her into thinking about independence, fertility and what her illness might mean for the family she hoped to build.

She also had a more practical worry: If she deteriorated and could no longer speak for herself, who would have to decide what came next?

An unexpected process

Working in healthcare, she had seen families at odds when a loved one could no longer communicate and difficult choices had to be made quickly. “I did not want my family to face the same struggle,” she said.

Her doctor referred her to the Advance Care Planning (ACP) team at National University Hospital (NUH) to talk through her wishes and concerns if her condition worsened. She expected something formal and grim. Instead, she found the process unexpectedly approachable. “It was very light-hearted, and we were able to have honest conversations about my illness trajectory, including death,” she said. 

But there was still one fear she had already voiced at home: She was adamant she did not want dialysis. Her partner supported her, but he worried it could change how clinicians treated her. He was afraid that “doctors won’t try so hard to save me”.

Ms Leong told him that was not how care works. If something was acutely reversible – an infection, for instance – doctors would still act urgently in her best interests. For her, the point of planning was to make sure her fears and priorities were understood if she could not explain them later.

She also appreciated learning that ACP can be revised as life circumstances change. “It’s not ‘tick a box for DNR (do not resuscitate) and that’s it’. It’s very individualised,” she said.

Values before interventions

Clinicians say that is the point: The conversation begins with the person, not the procedure. “Understanding a person’s goals and fears ensures their voice is heard even when they can no longer speak for themselves,” said Dr Yee Choon Meng, Head and Senior Consultant, Division of Palliative Care, National University Cancer Institute, Singapore (NCIS). 

ACP begins by asking what matters to the person – such as dignity, independence and acceptable quality of life – and uses those values to guide discussions about treatment.

Ms Leong felt this was critical. She could name what she wanted to protect and turn those priorities into clear guidance.

The conversations also nudged her parents into discussing their own wishes. It was difficult, but it brought the family closer. For her, planning early was less about predicting the future than about easing the emotional burden on the people who would otherwise be left to guess.

What clinicians want patients and families to discuss

At its heart, ACP is a structured conversation to clarify a person’s values and the level of medical intervention they would accept, so families and clinicians face less uncertainty if the patient cannot communicate.

It is not a legal document and differs from an Advance Medical Directive (AMD) or a Lasting Power of Attorney (LPA), though the tools can complement one another.

“Caregivers often become the decision-makers when patients cannot speak for themselves,” said Ms Yvonne Loo, Advance Care Planning Care Coordinator, NUH. “They need to truly understand the patient’s preferences, values and beliefs.”

In practice, that means going beyond a single yes-or-no decision. Discussions often cover views on intensive care, intubation, CPR and artificial feeding, preferred place of care, who should act as proxy decision-maker, and any spiritual or funeral considerations.

NUH encourages referring doctors to raise ACP early and provide reading materials. Facilitators then contact patients ahead of appointments and suggest they bring the person they would want to speak for them. “With these steps, the quality and completion of ACP discussions have improved,” Ms Loo said.

A crisis forces hasty decisions

ACP works best when people have time to consider options. A crisis narrows choices and forces rushed decisions. Dr Yee described a patient who initially declined ACP but changed his mind after a life-threatening episode that required emergency intensive care.

“After that near-death experience, he became very keen to discuss the possible medical situations he might encounter as a result of the complications from the disease,” Dr Yee said.

With his wife present, the team explored likely scenarios, his goals and his preferred place of care and death; he left reassured that his wishes were heard.

People often consider ACP after a major diagnosis, before high-risk surgery or treatment, or when life priorities shift, such as marriage, family planning or new caregiving responsibilities. Starting earlier gives everyone time to talk, reflect and record preferences while the patient can still express them.

In her view, planning early is less about predicting the future than reducing the emotional load on everyone else if the future turns difficult.

At NCIS, the Appropriate Care programme – which was launched in 2024 – brings clinical teams together to align treatment plans with patients’ priorities. The team may reduce non-essential medicines, streamline appointments or avoid invasive procedures that do not support comfort or goals of care. For patients with a prognosis under six months, the programme initiates Serious Illness Conversations or ACP to keep decisions centred on the patient’s values and avoid unwanted interventions.

For Ms Leong, planning early was not about predicting what would happen next. It was about putting her fears and priorities into words, while she still could – so if her health changed quickly, her family would not be left guessing.

In consultation with Dr Yee Choon Meng, Head and Senior Consultant, Division of Palliative Care, NCIS, and Ms Yvonne Loo, Advance Care Planning Care Co-ordinator, NUH.