Advanced care planning for people with disability

Advanced care planning for people with disability

It’s not something that people like to think of, but there may come a time when you’re not able to express your wants when it comes to health care. Planning for this means you’ll be treated the way you want.

Key points: 

  • An Advance Care Directive sets in stone your wishes when it comes to health care

  • A substitute decision-maker will make sure your wishes are followed if you can’t

  • For some people, they may not be able to complete an Advance Care Directive, but there are other ways to have their wishes met

What is advance care planning?

Advance care planning can offer a sense of control as it allows people to speak up about what matters most to them when it comes to planning for any future medical treatment and other care needs.

Advance care planning is important for everyone, but it is particularly important for older people, people with disability, people who live with a chronic illness, early cognitive impairment or multiple diseases, or are approaching the end of their life. 

Planning your care means that family members, loved ones and doctors can know your wishes which helps them make decisions that respect your wishes and preferences.

Advance care planning involves: 

  • Completing an Advance Care Directive 

  • Appointing a substitute decision-maker

Creating an Advance Care Directive

An Advance Care Directive (ACD) is a legal document that allows someone over the age of 18 to set in stone their decisions about any future medical treatment and healthcare including values, either cultural or religious, and wishes. 

For example, some people include ‘do not resuscitate’ orders in their ACD as they may be concerned about how their body recovers after they are resuscitated.  

When creating an ACD, it’s best to have a discussion with your family, health care providers and even your friends about your wishes and your reasons for making your decisions. This is so that those around you can be on the same page about what you want. 

It is recommended that you speak with your doctor about any underlying disability or illness and any other relevant conditions you need to consider when preparing your ACD. 

You should consider asking questions about things like the expected trajectory of your illness and how this might impact your future quality of life. 

You may also want to ask about the different treatments available and weigh up both the benefits and the drawbacks of these treatments. 

Although not required in every State/Territory, you may also want to get your doctor to sign the document to verify that you had the mental capacity to make the documents. The document will generally need to be witnessed by an independent witness. In Australia, there are a number of witness requirements that need to be met.

Once you’ve written your ACD, you will then want to make sure that anyone who may be involved in making health care decisions, if you lose the capacity to do so, has a copy. You may want to make sure that the following people have a copy: 

  • Your Enduring Guardian (if you have appointed one)

  • Your medical practitioner (so that they can place it in your patient file)

  • Other family members

It is a good idea to add your advance care plan/ACD to your My Health Record, so that, if ever needed, it’s easily available to your treating doctors. You can also store the names of people you have shared your plan with.

Make sure your advance care plan and Advance Care Directive is kept up to date. You should review your plan when: 

  • Your preferences change

  • You substitute decision-maker (SDM) changes

  • When your medical condition changes

Substitute decision-maker

A substitute decision-maker is responsible for making decisions that you would make for yourself or act in your best interest when you are not able to. 

When selecting someone to be a substitute decision-maker one of the best safeguards is to appoint a person that you can trust and then inform them of your health care preferences. As well as supply them a copy of your Advance Care Directive. 

In cases where health care practitioners or other family members believe that your best interests or wishes are not being upheld, the matter may be referred to a tribunal.

If the person with a disability is unable to appoint a substitute decision-maker, a guardian (for health matters) can be appointed by a tribunal. 

In addition to appointing a substitute decision-maker and discussing your preferences with them, it is also recommended that your Advance Care Directive is clear in what you want to avoid confusion

Intellectual disability considerations

For someone who lives with an intellectual disability, there may be some additional considerations when it comes to making sure their wishes are met. 

Because an ACD is legally binding in Australia, it needs to be made by someone with appropriate decision-making capacity. In other words, a person needs to have the ability to make day to day decisions about legal, medical/health care, financial and personal matters.

This means that when creating an ACD, the decision-making capacity will need to be considered. Nominating a substitute decision-maker in case someone no longer has the ability to make their own decisions is also important.  

For people without a decision-making capacity, they are unable to make an Advance Care Directive. However, there is the understanding that with the right support in place, they may be supported to make their own treatment decisions. 

Depending on where the person lives in Australia, other advance care planning documents can be completed. For example, in the Australian Capital Territory, the Statement of Choices for a non-competent person is available to be completed. 

It’s important to note that these kinds of documents are not legally binding like an ACD is, however, they can still be used to guide medical treatment decisions.

The requirements and forms for advance care planning differ across Australia. You can find and access the relevant forms on the Advance Care Planning Australia website

What do you want to outline in your Advance Care Directive? Tell us what’s important to you in the comments down below.

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How can palliative care be more accessible for people with intellectual disabilities

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