Discussing end of life with your loved ones

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Talking about dying, palliative care, and end of life is not easy – some people with disability may find it overwhelming and confronting.

Key Points:

  • Receiving a terminal diagnosis can be difficult for you and your loved ones, especially as you begin contemplating your end of life or palliative care options
  • Speaking openly about what is happening and what your future care will look like not only gives you peace of mind, but also guide those who care for you
  • Talking about your wishes can lead to forming an Advanced Care Directive, which solidifies your wishes for when you may not be able to articulate them

It can be a difficult topic to broach with friends and family, especially if you are still wrapping your head around the news that you are dying.

The topic of dying and end of life care can often be thought of as something that older people need to consider, not younger people in the community.

Having a disability doesn’t mean you will die from that disability, however, this cohort can have a shortened life expectancy or die from preventable illnesses. For example, research has shown people with intellectual disability die 27 years earlier than people without and also are twice as likely to die from avoidable illnesses.

End of life has no age limits, and some disabilities, such as severe degenerative neurological conditions like Parkinson’s, can lead to a terminal diagnosis.

It is important to let your loved ones know what your wishes are if you are living with a terminal illness so you can all prepare and have time to make tough decisions.

But how do you navigate this difficult task?

Breaking the ice on a tough subject

Sometimes, the hardest part about end of life conversations can be knowing where to start.

Explaining to family and friends that you are dying can be difficult for them, but also very difficult for you as well.

There is no right or wrong way to talk to your loved ones about dying, end -of-life, palliative care and future planning dying, and conversations like this can commonly happen over time.

Discussing your end of life care does not need to be one big conversation all at once.

You can make your wishes known by breaking it up into a number of discussions to reduce the risk of you and your loved ones becoming overwhelmed.

But the first step is to think about what you want your end of life care to look like.

This could be early-stage decisions like what treatment you want to receive, pain management, and your estate plan.

But also think about who you would like in the room in your final moments, where you would like to be in your final moments, and what spiritual or cultural needs you want met.

Try to find a quiet space where you can speak openly and calmly to your loved ones, and remember that you can share as much or as little information as you would like.

There are some ways you can ease into a conversation of this nature.

Some opening lines sound like:

  • “I have found out that I am dying, and I need to discuss it with you because…”
  • “I know it might be hard to talk about, but it’s really important to me…”
  • “We have spoken about what happens after I pass away, but we have not talked about my end of life care…”
  • “I have been speaking to my doctor, and they have asked me to think about a few things…”
  • “If I was no longer able to make decisions about my treatment or care, I would like this person to be my substitute decision-maker…”
  • “When the end of my life approaches, I would like to be cared for at this location…”
  • “This is the type of health care I would like to receive…”

It is also important to give yourself the time and space to grieve over your diagnosis news, which can be assisted through counselling, and to have these conversations when you feel most comfortable.

Accessing end of life care

Palliative care services are commonly mistaken as care your receive only when death is imminent.

But palliative care is not reserved for people in their final weeks or days, or just the elderly.

It revolves around maintaining your quality of life post-diagnosis for as long as possible, focusing on your individual needs and preventing and relieving pain. And this could be very early into a terminal diagnosis.

This end of life treatment can provide help for you and your loved ones to come together to talk about sensitive issues, as well as counselling and grief support.

End of life care is for people of any age, and involves many health professionals bringing together a range of services to manage your care preferences as you approach the end of your life.

Engaging these services early on can also help you prepare for your death and in what ways you can prepare.

Forming an advance care plan

It may be hard for you and your loved ones to know what to do next after talking about death, dying and palliative care..

When having discussions about your end of life care, you can also start solidifying your wishes in an Advance Care Directive (ACD). You can learn more about Advance Care Directives in our article, ‘Advanced care planning for people with disability‘.

Everyone should consider advance care planning, regardless of your age or health, especially if you have ongoing health treatments or illnesses.

Like making a Will, advance care planning may simply be a part of planning for the future as you live with a terminal illness.

Advance care planning can help make sure your loved ones and your doctors know what your health and personal preferences are when it comes to your end of life care and treatment, giving everyone some peace of mind.

It involves documenting your values, beliefs and preferences to help those around you make decisions about your care when you may not be able to.

Preparing and making decisions before you die can help take the burden off of your family when they may be in the process of grieving.

It’s important to start talking early about what matters to you when it comes to your end of life care to maintain as much control as possible over your choices.

If you cannot communicate your preferences, who will speak for you and what would you want them to say? You can put in place a decision-maker on your ACD for this very purpose – to speak on your behalf when you can no longer give directions for care and treatment.

You can formalise your full advance care plan through an Advance Care Directive.

You can update your ACD at any time, but the most recent version available is the one that will be used when the time comes.

Forms and requirements for writing Advance Care Directives vary between States and Territories, you can visit the Advance Care Planning Australia website to find out what is required for your Advance Care Directive.

Have you had an end of life discussion with your loved ones? How did you deal with that conversation? Let us know in the comments below and subscribe to Talking Disability for more.

Related content:
How can palliative care be more accessible for people with intellectual disabilities?
Tips for breaking down barriers to palliative care
Advanced care planning for people with disability
Your rights as a person with disability