Have you planned your care for the final days?

Have you planned your care for the final days?


By BRIGITTE ROZARIO

LIFE is full of uncertainties. You never know when you might be in a motor accident or have a heart attack or even become mentally ill. If any of these happen, does your family know how you want to receive medical care and what are your last wishes with regards to living arrangements, and even funeral rites?

In Malaysia, it is still pantang (taboo) to talk about death, and the final days, says surgeon and lecturer Prof Dr Chin Kin Fah. However, it is a good idea to discuss your Advance Care Planning with your family and even to document it in an Advance Care Directive.

What is it?

David Ong, partner at advocates and solicitors firm Chooi & Company, explains that Advance Care Planning is just a process for the elderly to talk with their family about what they plan to do for their care in the future.

“The Advance Care Directive is just a document that details their preferences and wishes on how they want their care to be administered when they are older, where they would like to stay, any specific treatments that they are not keen on, who should look after them, and which of their adult children they would like to live with.

“The main aim is really to relief the burden for whoever is taking care of you or whoever is trying to make decisions for you. Usually it would be the next of kin – the spouse or children. Your children and spouse may not know exactly what your preferences are. If you share with them your wishes then the decision-making process is easier for them,” says Ong.

David Ong: 'The main aim is really to relief the burden for whoever is taking care of you or whoever is trying to make decisions for you.'

David Ong: ‘The main aim is really to relief the burden for whoever is taking care of you or whoever is trying to make decisions for you.’

He believes that every senior citizen should have it done because everybody gets old and everybody would need care at some point in their life. “Most people do not die a sudden death. They usually grow old, fall sick and there would be a period of care for them. The longer it is, the more stressful it is for whoever is trying to look after you,” he adds.

While it used to be sufficient to just convey your wishes verbally to your children, today Advance Care Planning is the way to go, especially with adult children living away from their parents and in some cases in a different country. As such, the wishes of the elderly parents may not be known by their children.

Advance Care Planning is being promoted by most health agencies across the more developed countries such as Britain, New Zealand, Australia and Singapore.

Ong says that Advance Care Planning is not a must-have. If you don’t have such a directive, life goes on, but your wishes may not be taken care of.

“As countries become more developed, there is more emphasis on personal rights. Personal rights means acting in accordance with your wishes.

“For example in Britain, if you want to, you can refuse treatment because it is your body. You can refuse any treatment you want from a doctor, whereas that right is not the same here. If it’s a standard treatment that will save your life, the doctors can step in and administer that treatment for you here.

“The various jurisdictions have slightly different laws. For example, Singapore allows advance medical directives, which caters to whether you should pull the plug if someone is on life support. Singapore has a legislative form that gives the power to someone to make that decision for you.

“This is not the same as euthanasia. Many jurisdictions in the Commonwealth, including Malaysia, do not recognise euthanasia, which is the right to die. But the advance medical directive is just one step away from that.

“Rather than a positive act to kill me, it is just to refuse treatment and let the person die with dignity. Many jurisdictions allow that. In Malaysia, both are not allowed. There is no legislation that covers it, so therefore the doctors would not do it.

“In Malaysia, the next of kin is involved in making decisions,” says Ong.

He cites two examples of common scenarios:

One is where some family members believe in traditional medicine for the elderly parent’s care and other family members believe in modern medicine. With both going forward and administering treatment without informing the others, it puts the elderly person’s life in danger because there could be a reaction from taking both the traditional and modern medicine.

Another example is in terms of funeral arrangements where the family can’t agree on how it should be done and which rites should be conducted.

What it covers

There are a few categories when it comes to end of life wishes:

  • Care – Where you would like to live, if you want to stay in a nursing home, or if you want to live with the children and if so, which one. If you have dementia, where you would like to live, if not with the children.
  • Medical – Treatment that you want to receive, treatment that you refuse, decision or thoughts on life support and if you have any thoughts on DNR (do not resuscitate).
  • Financial – Your will kicks in after you die and determines how your assets should be distributed, but before that, if you are mentally incapacitated, your money just gets stuck in the bank and financial accounts and no one can access it. You may need it for your care. So, this is also an important area to look into – who has access to your money and your assets to utilise for your care.

Medical

Prof Dr Chin, founder of the Silent Mentor programme (http://3age.com.my/2015/04/03/donating-your-body-to-medical-training/), believes that discussing your medical care wishes is an important part of the care plan.

“A lot of times, if it is not properly discussed, it could perhaps lead to more suffering for the elderly as well as for the family. Sometimes this might also make it difficult for the medical staff to manage the patient,” he says.

He explains that in Britain, according to the Hippocratic Oath, if the patient is not able to make a decision because of a critical illness, then the doctor will have to act in the best interest of the patient. This covers intervention and treatment.

He believes it would be sensible for the elderly to also discuss with their family and document where they want to live in their last years if they are not able to make a decision then.

Prof Dr Chin Kin Fah: 'If you can pre-plan your retirement package, I'm sure you can pre-plan what happens if you get dementia.'

Prof Dr Chin Kin Fah: ‘If you can pre-plan your retirement package, I’m sure you can pre-plan what happens if you get dementia.’

“If you can pre-plan your retirement package, I’m sure you can pre-plan what happens if you get dementia. Where do you want to go, do you want to go to a home, how much do you want to be treated, do you want to stay in a nice place and die gracefully ….

“As we age, we may have dementia and may not remember what we want to do so in that sense to have a last wish to let your family know what is the most important part of your life, are you going to retain your dignity or are you going to have so much active treatment that at the end you lose your dignity? I think it’s crucial to have that kind of discussion and document it so that everyone understands, because when you become demented you will not be able to make a decision.

“It’s always good to prepare for it because you don’t know what is going to happen. Talk to your family about your wishes, what level of care you want, how much you can afford,” says Prof Dr Chin.

As for DNR, Prof Dr Chin says it is something that needs to be discussed with the family. Normally when the patient comes in with a critical illness, the doctor would document their wishes, then they would know how to proceed if the patient’s heart stops. “Normally we would discuss with the family as well so that everyone is on the same page,” he says.

According to him, it is not so straightforward to include DNR in the Advance Care Directive, as the elderly may or may not have a treatable condition.

He suggests that they might write something like:

“If I am in the condition of cardiac respiratory arrest and if the doctor feels I should not be brought back to life, please support the doctor’s decision. In other words, do not resuscitate.

“But, on the other hand, if the doctor feels that I still have a chance, please go ahead and resuscitate me.”

He informs that there are cancer patients who do not want to go for treatment and instead go for a holistic approach. They accept full responsibility for their decision.

“It’s a good idea to think about what you want to do towards the end of your life. It may not happen, but you never know, you may just get a stroke and become a vegetable,” he says.

Financial

To take care of your finances while you are still alive but physically and/or mentally incapacitated, you will need to give an appointed person your power of attoney.

“It allows the donor (the elderly person) to give their assets, specifying which assets the power of attorney can have access to. This can be bank accounts and property to be sold,” says Chooi & Company’s Ong.

You would need to speak to your lawyer about who you want to appoint – obviously someone trustworthy, and which assets you want to allow this person to access for the purpose of paying for your end of life care and to continue taking care of your family.

“What happens if you fall mentally ill or if you have an accident and fall into a coma? Your spouse and your children cannot access your bank accounts, EPF, properties, and car. Everything is just stuck. So, if you give the power of attorney to someone to deal with those assets under those circumstances, it makes life easier for the rest of the family.

“This is to safeguard against something bad happening and everything just falling apart,” says Ong.

According to him, Malaysia does not have a Mental Capacity Act or lasting power of attorney which would kick in only when you have been certified to be mentally incapacitated. “So, we have to go back to the power of attorney and set limitations within what you draft into the power of attorney – when they can act and under what circumstances,” says Ong.

What you need

The legal document which should be drafted by the lawyer is for the power of attorney.

For your care and medical wishes, you just need to draft an Advance Care Directive. This can be done by you or any of your adult children or anyone you trust. It is not a will and not a secret document. It can be shared with all family members so that everyone knows your wishes.

This directive can be reviewed and updated from time to time, as you deem necessary.

Conclusion

Simply put, Advance Care Planning is a process of sharing your final day wishes with your family.

It includes:

  • Discussing what your beliefs and wishes are with your family for where you want to live, medical treatment, finances, power of attorney and even funeral arrangements.
  • Talking with your doctors about your illnesses and potential treatments and your wishes about end of life treatment.
  • Documenting your Advance Care Directive and sharing it with your family.
  • Giving the power of attorney to someone you trust. See your lawyer to do this and make sure you include the circumstances and the accounts, finances you want to give him or her access to and for what.

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