Your end-of-life care plan: Why it’s so important, how to make your own

If you’re like many 60-pluses, you’re already in the thick of end-of-life care issues, whether it’s because you’re helping your parents navigate the health care or aged care systems or because you’re starting to talk to your kids about your own healthcare wishes for later life.

But you may not be sure about how to take the next important step, which is to formalise your plans by putting them in writing. Luckily, there are many resources and plenty of advice available to help you set out your healthcare wishes for your later years.

Here’s an easy guide on how to use those resources to carry out advance care planning.

What’s end-of-life care planning?

The term ‘end-of-life care’ is sometimes used interchangeably with palliative care, but most often refers to the care you receive in the last weeks or days of your life, whereas palliative care can be administered for much longer periods.

In simple terms, planning for your end-of-life care involves making clear your wishes now, so that if serious ill-health makes it impossible for you to communicate them in future, your loved ones know how you want to be treated.

Advance care planning can include you setting out a wide range of decisions around the medical and other treatment and support you’d like to receive when you’re seriously ill or in the late stages of a life-limiting disease. For example, it can refer to how you’d like to be medicated for pain relief at the end of life, the type of palliative care you’d prefer to receive and even whether you’d want to be resuscitated in certain circumstances.

There are different documents suited to the various elements of care planning that, when held together, effectively form your advance care plan.

Why is it important to document my care wishes?

Brisbane-based Jolene Hill founded Your Life Assist, which offers free advice on end-of-life decisions, after nursing her husband David through terminal cancer. That experience, and her professional experience as a funeral arranger, convinced her of the importance of end-of life planning – because you just don’t know what life has in store for you.

“A major accident or illness can change the course of your life in unplanned ways,” Hill says, noting that 50 percent of people aren’t actually able to make decisions or express their own thoughts by the time they die.

“Should you become mentally or physically incapacitated, you’ll have assisted both yourself and your family in making important decisions about your end-of-life wishes, if you have previously discussed and recorded your decision about these matters.”

She says that the most important documents to have in place as part of an advance care plan include an advance health directive (AHD), an enduring power of attorney (EPOA) and, of course, a will. (Don’t forget, though, that your AHD and EPOA remain effective only while you’re alive, and that after your death, the wishes set out in your will replaces any instructions you may have set out in your AHD and EPOA.)

It’s also important to ensure to let your family know what kind of palliative care you’d prefer to receive, your feelings about organ donation and any life insurance you have in place.

How to make an advance health directive

An advance health directive (AHD) – also known as a living will – is a legally recognised way for you to give instructions about your future health care. An AHD comes into effect only if you’re no longer able to make your own decisions, most likely due to having lost legal ‘capacity’ to do so.

Capacity is an important concept to understand; legally speaking, capacity is the ability to understand the significance of what you’re doing, whether that be to enter into a binding agreement or make a decision. There are different legal tests for capacity depending on the circumstances of the decision and the tests also vary by state and territory. (You can read more about Queensland’s capacity rules here.)

Having an illness that causes cognitive impairment, such as Alzheimer’s disease, doesn’t necessarily mean you don’t have capacity to make decisions. Only a health care professional can determine whether your capacity is impaired or not.

Just in case you’re ever in a position where you’ve lost capacity, an AHD allows you to specify what ‘quality of life’ means to you so your family and medical professionals know whether or not you’d prefer to be resuscitated or treated in certain circumstances, such as if you received a severe brain injury that prevented you from communicating or were diagnosed with a terminal illness.

An AHD also sets out whether you would like to receive life-sustaining measures such as tube feeding, and whether there are specific treatments or medications that you would prefer not to receive.

An AHD lets you nominate a representative to ensure your wishes are acted upon, and includes information health professionals should know about you, such as whether you have any spiritual and cultural beliefs that may impact your treatment.

If you have an existing health condition, an AHD should contain information on that condition – but it’s important that if your condition could later impact your capacity, you complete an AHD before that happens.

An advance health directive form can be printed from the Queensland government website, or you can obtain one from your GP or local hospital. The form needs to be partly filled out by a doctor and must be witnessed by a Justice of the Peace.

You should keep the original version of the form and lodge a copy with your doctor or lawyer or a trusted family member.

What about organ donation?

Knowing your wishes regarding organ donation can make what will no doubt be a difficult time for your family a little easier – because if you haven’t made your thoughts clear, they will be the ones called on to make the decision shortly after your death.

If you want to donate your organs or tissues when you die, you can join the Australian Organ Donor Register, which has replaced the system where your preferences were noted on your driver’s’ licence. You need only your Medicare card to register online, which takes just a few minutes.

Do I need an enduring power of attorney?

An EPOA is a legal document that gives another person the authority to make decisions for you when you no longer can, including about your health care.

An EPOA can be useful if you have wishes outside your end-of-life care that you’d like documented in one place, because an POA can also make decisions about your finances, your property and assets, where you will live and many other important aspects of life.

However, it’s important to know that in Queensland an AHD will override any decisions you’ve documented regarding your health care in an EPOA, should you have both.

And if you change your mind about your chosen POA, you can remove them at any time by using what’s called a revocation form. This does, however, require you to retain your decision-making capacity – a revocation cannot be recognised if you’re deemed to no longer have capacity.

You can complete an EPOA form yourself, but many people choose to talk to a solicitor or financial planner first to ensure they have all the key elements covered.

Queenslanders can download short forms, which are intended for people who want to appoint the same attorney for financial, personal and health matters, from the Queensland Government’s website, or obtain one your local doctor or a hospital.

You can also download long forms, which are used when you want different attorneys for financial, health and personal matters, from the government’s site or, again, ask your doctor or a local hospital for one.

Similar to an AHD, the original EPOA document should be kept in a safe place, but you may also wish to give copies to your doctor, solicitor or accountant and to the spouse, family member or close friend you’ve nominated.

If you don’t have a friend or family member that you’d like to choose as your POA, you can apply for a Queensland public guardian via the Office of the Public Guardian. A public guardian will enact your wishes in the same way as anyone appointed under an EPOA.

Will I have access to palliative care?

Jolene Hill of Your Life Assist puts paid to the common misconception that palliative care is only relevant to the last few days or weeks of life or that it mainly involves the administration of pain relief.

“Palliative care is not just care provided in the final stages of life, as it can also be of benefit to a person at their initial diagnosis or be useful at intervals through the various stages of the illness,” Hill says. “Many people have a long-term involvement with their palliative care team during the course of their illness.”

Palliative care is designed to ensure the highest quality of life and care for people with a life-limiting illness, whether that be over a short or a long period. This care can be given to you at home, in a hospital, a palliative care unit, a residential aged care facility or a hospice – the location will depend on the preferences you set out in your advance care plan and what your health status permits, among other factors.

For Medicare card holders, palliative care delivered by Queensland Health is normally free, but you may still need to pay for specialist equipment, medication, treatments, services or dressings. Costs may be incurred for services beyond those supplied by Queensland Health, such as the cost of your accommodation if you choose to be treated in a private hospital.

Your private health insurance and Medicare may cover some palliative care costs, but it’s key that you check the details of your individual policy and what rebates Medicare may offer.

The National Palliative Care Service Directory is a good starting point for finding information on palliative care service providers, organisations and community support services, but talking to a GP or health professional is also important because you’ll need a referral to access most palliative care services.

Don’t forget to get your paperwork in place

Making sure all of your documents are well-organised and in a place where your family knows to find them is another way of making life easier for your loved ones. And if you have life insurance, you should ensure information on your policy is among those documents.

Also known as death cover, life insurance pays a lump sum to your beneficiaries when you pass away.

Most super funds provide their members with basic death and total and permanent disability cover, but it’s important to ensure the beneficiaries you have nominated are up to date. It’s also important to know that this cover usually cuts out once you’ve turned 65 or 70 (individual policies vary), so check with your super fund if you’re unsure whether you’re covered.

Even if you don’t have life cover that will leave your loved ones with a lump sum, it’s vital to talk to them in detail about the care you’d like at the end of your life and let them know where to find your advance care planning.

Jolene Hill points out that these discussions don’t need to wait until you’re suffering a serious illness or are at risk of losing capacity.

“It can simply mean just getting your personal circumstances organised before embarking on something important or long-term, like moving to live or travel in another country for a lengthy period,” she says.

In fact, this type of chat doesn’t even need to wait you’re about to make a big life change – a relaxed get-together with family can be the right time to talk over your plans for the future.

If you’d like to read more about end-of-life care before doing your own planning, the Queensland Government has a wide range of online information and resources that contain the answers to most common questions.

How have you set out your own end-of-life care wishes? What advice would you give to others considering doing the same?

IMPORTANT LEGAL INFO This article is of a general nature and FYI only, because it doesn’t take into account your personal health requirements or existing medical conditions. That means it’s not personalised health advice and shouldn’t be relied upon as if it is. Before making a health-related decision, you should work out if the info is appropriate for your situation and get professional medical advice.