Taking heed of advance care planning
Tan Jee Yee 
Advance care planning also helps reduce friction and indecision among family members should the unexpected happens to you and they don't know your wishes – Freepik

IN the living room of 35-year old Jack Teoh sits a prayer altar, bathed in the soft red glow of its electric candle. He glances at it before turning around to speak about his mother, the matriarch of his family until a year-and-a-half ago.

“My late father may have built our family finances, but it was mother who built up our family,” he says.

His mother suffered a stroke and was left largely immobile during the last year of her life. In Teoh’s own words, that period was like a “bad Hong Kong television drama”.

“We didn’t know what to do, basically,” he says. He has five siblings, all whom began arguing over what to do with his mother’s condition.

“All of us have different memories of what my mother wanted us to do if she was ever bedridden. Some of us remembered her saying that she would prefer a hospice, but some of us remembered that she would want home care. It turned ugly a few times.”

There was also the matter of finances. Teoh’s mother had savings that would’ve helped during the period, but it was locked up in a personal account that none of her children had access to. “We could afford her healthcare by pooling our resources, but that added to the arguments, too,” he says forlornly.

Their relationship remained sour until his mother passed away. “I don’t want to think of it so negatively, but there’s peace now, and we’ve mended our relationship,” he says.

As per his mother’s will, the family’s assets and funds were all equally distributed. Still, Teoh wonders if the time before his mother’s passing would’ve been better.

“Maybe, if we had conversed better, and planned things ahead when my mother could provide her input, things would’ve been better,” he says.

“We’ve relied on my mother so much that, when it’s time for us to take care of her, we just didn’t know what to do.”


Planning one’s care

There are a lot of what-ifs in life. While we can’t predict the future and account for each possible outcome, we generally do our best to ensure that we’re sufficiently prepared.

This is why wills exist – to ensure that, in the event our deaths, our possessions and family wellbeing are being taken care of.

But what if you’re rendered catatonic? What if, as you age, you worry about being increasingly unable to make the right decisions? What if you want specific instructions on how your welfare should be handled in the event you can’t make those decisions? What if family disputes like Teoh’s happen?

This is where advance care planning comes in.

Advance care planning, or ACP, is the process of making decisions about the care you would want to receive if you have become unable to speak for yourself. “It’s for when your family needs to know what you would like to have when you’re older, or in circumstances when you can’t make decisions,” says Aged Care Group Sdn Bhd CEO Dr Carol Yip.

Unlike wills, ACP is not legally binding. But it’s just as good as a set of instructions for how you would like the remainder of your life to be, says Yip

One may think of it like a will, but for when you’re still living. “Unlike wills, ACP is not legally binding. But it’s just as good as a set of instructions for how you would like the remainder of your life to be,” she explains.

For the most part, we would have provided verbal instructions to our family members and caregivers over how they should approach our care. But that may not be enough. “What’s verbally said may not be clear enough, which will lead to different interpretations,” Yip says. “If you write it down properly, which is what ACP is, people would clearly know your intentions.”


Important thought

It’s more vital than ever for most of us to be aware of ACP. Malaysia is, after all, becoming an ageing nation. The Malaysian Journal of Medical Sciences documented, at the moment, the number of Malaysians aged 60 years and above is estimated to be 1.4 million, and projected to increase to 3.3 million by 2020.

At the same time, the Department of Statistics expects the country to become an ageing nation by 2035, where 15% of the population will be classified as senior citizens, bringing the ageing population to 5.6 million. By 2050, the number is projected to increase to 9.6 million – 23.6% of the population.

Advance care planning is thus vital in one’s old age, as the chances of us being afflicted with severe ailments increase. Our mental health is an issue too – dementia, for instance, may make it increasingly difficult for us to make sound decisions.

ACP is especially important for people who have been diagnosed with life-limiting conditions, who can preemptively list down the type of care they would prefer during more debilitating stages. The same goes for people with a family history of illnesses like cancer and heart attacks.

Put in this context, ACP isn’t just something people have to put their thoughts into when they approach their ageing years, but something to consider at every age, regardless of health conditions. This is to avoid stressful situations for the person’s loved ones, who may have to make guesses about the type of care you would like to receive in the event of an unexpected medical crisis.

ACP isn’t just about determining what sort of care you would want to receive, but also to appoint someone to speak on your behalf should you lose the ability to communicate. “As you discuss your ACP with your loved ones, you may want to choose someone who can speak on your behalf,” says Yip.

It’s also to help reduce the stress around one’s family during medical crises. “Having it [ACP] properly documented and communicated to the family will help avoid family members being caught in situations where decision-making becomes difficult,” Yip adds.

Most importantly, though, ACP allows you to choose how you live the last of your days. Sometimes, we may be subjected to non-beneficial medical treatments at the end of our lives – if we so desire, an ACP could convey our “do not resuscitate” wishes. 

Advance care planning is important to ensure that we properly communicate the type of care we prefer at the later stages of our life – Freepik


Beyond ensuring welfare and healthcare, having an advance care plan will also allow the person to determine how their finances can be managed when they are unable to do so. It may be in the person’s wishes to use their own savings for treatment, but what if they can’t communicate that wish?

“It doesn’t just have to be [managing] money; it could be jewellery, assets, anything that can be converted into cash,” says Yip.

ACP is something that can be done privately – the most important aspect is just ensuring that things are written down and communicated properly with one’s family members. A more comprehensive thing to do is to work with aged care groups like Yip’s organisation, who can assist one in creating their ACP.

Aged Care Group has multiple subsidiaries that provide an integrated care ecosystem that coordinates a variety of healthcare and long-term care services.

“Most of the time, when a person comes to us, they are already in need of care. At that stage, we would start talking to that person and their family members on what needs to happen and what needs to be done,” Yip elaborates.

“We would have to start getting the client to think and putting things in action, and in writing an ACP.”

The benefit of platforms like Aged Care Group is that they have a pool of experts, including lawyers, financial advisers and doctors, all of whom can help provide a more comprehensive ACP, as well as allowing the patient to directly discuss their advance care plans with their doctors.

The thing to note about ACP is that, according to Yip, it’s not legally binding in Malaysia. That is, unlike wills, a written ACP doesn’t need to be legally applicable. The benefit of that is that it doesn’t require a person to go through a series of legal procedures to alter their ACP to suit their changing preferences.

But this means that it will be legal limitations, allowing other medical practices and doctor decisions to overwrite. It also means that your family members and loved ones can choose not to heed it. It’s just a set of instructions, in the end.

There are countries which are making ACPs enforceable. Australia is one such country, though it differs with each state and their respective laws. Patients can complete and sign legal documents that make their wishes clear.

Ultimately, advance care planning is to allow us to live the rest of our days in the way we want. It not being legally binding may be cause for concern, but it’s still undeniably important that we convey our wishes clearly.

Planning for your advance care

ADVANCE care planning may sound morbid and depressing, but it’s something that needs to be done, and reviewed constantly. Living Matters, an advanced care planning (ACP) programme in Singapore, lists down four simple steps to ACP:


Think about it

ACP starts with the person needing to consider what they need to live meaningfully, and what would be important to them at the end of life. The person should also try to understand their health and how it might change in the future.


Discuss it with your loved ones

It’s important to talk about one’s wishes and goals for care in the future. This helps our loved ones better understand our decisions. We should also choose one or two trusted individuals to be our voice should the worst happens. It’s vital to involve them as you make your ACP.


Put your wishes in a plan

After the first two steps, it’s time to put your decisions and wishes on a document that you can share with your loved ones. The preferences should also be shared with the family doctor or healthcare provider, so everyone would be on the same page.


Review your preferences

Your preferences are likely going to change over the years, so it’s also good practice to update your plan accordingly. This can happen with new experiences or changes to your health. After an update, inform your loved ones and other important persons, as well as providing copies of your new plan so that they have the latest version.

It’s not difficult to source for an ACP sample online, which should comprehensively cover the type of things you should write down in an ACP document as well as what to do with it. Since it’s not a legally-binding document, there’s no set template.

The document should clearly cover one’s preferences, concerns and fears, as well as what’s meaningful and important to them. Topics in the document may appear morbid – you may be asked to write down what you would consider as important as you are dying (Is it comfort? Are you worried about pain? Would you want your spiritual needs attended?).

This is also the time to inform family members on the document on your funeral preferences, and whether or not you’re an organ donor.

Because ACP should cover the treatment and care that you want, you should also be privy to emergency treatments, so that your loved ones can make the decision you want. This includes knowing what cardiopulmonary resuscitation entails, as well as tube-feeding and intubation.

There’s no necessarily wrong way of ACP, and while it doesn’t require things to be very comprehensive, what’s most important is that your wishes are properly written down. 

Financial planning for your advanced age

PREPARATION for one’s advanced age should also come with a fair bit of financial planning. As one gets older, making financial decisions may be tougher.

Dr Carol Yip, CEO of Aged Care Group, says that for an advanced age, one must decide on what can be liquidated into cash.

“You must know which of your assets that can be turned into cash. It’s often hard to tell how much you need, so it’s safer to convert your assets into cash,” she says.

Having more cash means being able to pay for any emergency or medical needs that are required more easily but cash also has an added benefit as inheritance. Yip says that family members tend to fight over inheritance assets because they are not in cash form.

It’s hard to properly (or equally) divide one’s house among your children, for instance, as it involves multiple names. It’s harder to resolve when they want it split as well.

“That’s why financial decisions need to come to a point where you make life better for your beneficiaries. You need to turn them to cash, so even if you decide to leave it for your children, it will be easier to divide,” she says.

This article first appeared in Focus Malaysia Issue 274.