How to start a thoughtful conversation with your loved ones about death and life support

At the start of the year, my grandmother was unexpectedly hospitalised after a sudden bout of illness. Her hospitalisation took us by surprise, because she had never mentioned feeling unwell previously. 

Thankfully, she made a full recovery, but given her age, the doctors recommended discussing an advanced care plan (ACP) with her since she had no such documents on record. This would ensure that her care preferences are clear, should she be hospitalised again in the future.

Perhaps due to the timing of her hospitalisation during Chinese New Year, some of my aunts and uncles were reluctant to talk about anything related to medical planning or end-of-life care, believing that it was inauspicious and would bring "bad luck" during the festive season. 

Beyond that, they expressed concerns about being seen as unfilial for raising such a topic with her while she was still alive. For them, discussing death and end-of-life matters felt not only taboo but almost disrespectful.

As a youth in my 20s, I am fairly open-minded about discussing death, partly due to the nature of my job, which involves interacting with people who have different life experiences. 

However, for my older relatives in their 60s and 70s who are set in their ways, the topic remains deeply uncomfortable.

So although I recognised that it may be helpful to clarify healthcare preferences in case one of us becomes unable to make decisions, I was apprehensive about bringing up the subject with my older relatives for fear of facing backlash or resistance from them. 

This left me wondering: How can we then approach such sensitive topics with older adults?

WHAT IS ADVANCED CARE PLANNING?

In Singapore, advanced care planning is aimed at helping people reflect on and document their healthcare preferences for future situations where they might be unable to make decisions about medical procedures on their own. 

The Agency for Integrated Care, which oversees eldercare matters, states that ACP typically involves discussions about personal values, desired or undesired medical treatments and care settings.

People may decide if they want life-sustaining interventions such as resuscitation or feeding tubes and can also specify where they wish to receive care, such as at home, in a hospital or in a hospice.

Dr Adeline Lam, co-clinical lead for the advance care planning team at Tan Tock Seng Hospital (TTSH), said that without clear guidance, family members often struggle to make healthcare decisions during critical moments.

“The burden of making crucial decisions during a medical crisis will become immense for the family.”

Having such conversations is meant to ensure that healthcare decisions reflect the person's values and preferences, for example, if your religious beliefs may or may not support certain extreme medical interventions.

It is also meant to relieve family members from making difficult choices – if they wish to relinquish decision-making to other parties, for instance – during emotionally charged times.

It will then guide the healthcare team on how best to care for the patient.

An ACP thus offers some form of control in that family members and the patient will know that their wishes will be respected.

The downside, though, is that what is being decided now may not be what the patient or family wants in a future time, since people do change their minds and their life circumstances and preferences may change – but that is a topic of discussion for another time. 

‘PANTANG’ TO TALK ABOUT CARE PLANS

When I presented my situation to Mr Sammy Leong, case manager at non-profit healthcare service provider Sata CommHealth, he also said that the older generation “might feel 'pantang' or superstitious” to talk about end-of-life matters or serious illnesses, fearing that bad things would happen if such topics were discussed.

True enough, even after the festive period had passed, some of my aunts and uncles continued to avoid the topic, saying that it was no good to talk about it and that doing so would invite bad luck and misfortune.

Having conversations about death also seemed like they were wishing ill on their loved ones and anticipating their passing, which went against their belief in filial piety. 

Dr Lam, who is also a senior consultant at TTSH's general medicine department, said that in Asian cultures, death is often considered inauspicious and the values of filial piety weigh heavily on the shoulders of sons and daughters, which is why many older adults are averse to discussing ACP.

This is the most common misconception about such planning: That it is only for people at the end of life or when one has a serious illness, which is not true. 

“We can still do ACP when we are healthy and well; ACP is a conversation tool to assist people with difficult conversations about what they wish for in their health and how they want to be cared for in their life, and share these wishes with their family and their medical team,” Dr Lam added.

It is always good to have early conversations about it because life can be unpredictable or circumstances can change over time, she advised.

HOW TO BROACH THE TOPIC

Discussing advanced care plans with older family members can be tricky, but there are non-confrontational and thoughtful ways to initiate these important conversations.

Mr Leong from Sata CommHealth suggested starting by sharing personal experiences, encounters or observations. 

For instance, talk about a close friend or relative who was seriously ill, in the intensive care unit or bedbound. These real-life examples often resonate with family members. 

News reports about tragic accidents or health matters as well as television dramas that highlight family struggles are also good conversation starters.

“Ask your family members to think and comment about what would happen if that person were them? What would they do?

"This will get them thinking and talking about their values and preferences,” Mr Leong said.

I decided to try this with my parents, who were considerably more accepting and toying with the idea of doing an ACP.

I introduced my parents to the popular American drama This Is Us, which deals with themes of illness, death and end-of-life decisions, before casually bringing up the topic of ACP to them.

I asked them what care they would prefer if they were in the shoes of the main character Rebecca, who was diagnosed with a terminal illness.

Interestingly, they opened up more than I expected and reflected on what kind of care they would want if they found themselves in a similar situation.

Another approach involves playing games. For families who spend time together playing board or card games, discussions about care plans could be woven into these moments. 

One such card game, KopiTalk, created by the advance care planning team of TTSH and the Singapore Hospice Council, is a set of conversation cards that can be played in a small group. Some questions include what are the top three wishes in one’s life and what one values most in life.

I played this game with my family in a quick-fire style, based on the cards' prompts that ranged from light-hearted to thought-provoking.

Each of us shared our thoughts on various scenarios and the game made the idea of advanced care plans feel less daunting and more like a shared journey.

However, what if despite your efforts, your loved ones are still resistant to having such conversations?

Dr Lam said that some of her patient’s family members have started the conversation by playing an outreach video or simply leaving an ACP brochure on the coffee table at home.

“Sometimes leaving the door open for this conversation is good enough. When the elders are ready, they will know they can approach the younger ones.” 

She added that there is no one-size-fits-all approach because each person is unique and in various stages of readiness to have such conversations. 

“We should respect the elders if they are not ready or not willing to have this conversation,” she advised.

The important thing is for the elders to be aware that they have the opportunity to be involved in deciding what they wish for in their future healthcare planning. 

As famed Japanese author Haruki Murakami puts it: “Death is not the opposite of life, but a part of it.”

Starting such conversations about healthcare preferences may be difficult, but it is essential to honour our loved ones’ lives and values.

I’ve discovered that these conversations can foster connection and understanding rather than fear.

Embracing the reality of life’s impermanence allows us to live more fully, knowing that our choices and values will guide us through the complexities of healthcare decisions when the time comes.

For now, I am planning to reach out to my older relatives more intentionally, using the insights and strategies I’ve gained from my conversations with my parents. 

I hope to encourage them to think about their wishes and to reassure them that discussing such topics is not only important, but also an act of love.