Palliative care at home: How to plan for your loved one’s wishes
An end of life doula shares how to talk to a loved one about their wishes, so you can help them plan to pass away at home.
Accessing palliative care at home will allow your loved one to spend what precious time is left in an environment that’s full of memories. If you’re wondering whether this is the right option for a friend or family member of yours, it is important to talk about this sensitive topic, even though this can be emotionally difficult.
That is because 70% of Australians wish to die at home. However, the Grattan Institute found that due to a lack of advance planning, only 14% of people actually pass away in their own home.
So to help you feel comfortable talking about death with your loved ones, we asked to end of life doula, Jacqui Williams, for her advice. Jacqui is based in Brisbane and has worked alongside some of our palliative care CAREGivers to help people plan for what’s ahead, break down any of their fears around death and express their wishes.
Once you can have conversations about your loved one’s wishes, you will feel more confident to plan care in accordance with their preferences. That’s why this post has two parts to it: the first outlines how to discuss death and the second brings in practical planning advice.
How to handle difficult conversations about death
As an end of life doula, Jacqui supports people to have a positive death. This is an emerging role in Australia that offers emotional support for people with a life-limiting condition as well as their loved ones.
“What we do does not replace or duplicate the role of the health professional or a carer,” Jacqui says. “So you’ve got generalist health professionals out there and you’ve got specialists in palliative care. What I do complements those roles.”
Whether she is working with someone in the final stage of their life or a person who is proactively planning ahead, Jacqui starts with this question: What does a good death look like to you?
She says this is the first step in planning – and you don’t have to be working with a doula to discuss this question with a loved one. Many people haven’t thought about death in this way, and Jacqui emphasises that it’s okay if your loved one needs time to answer it.
She also offers the following advice for moving through these conversations
Talking to a loved one about their wishes
The first step is to check in and ask how they’re going. Things you can explore include:
- What have they been told to expect?
- What’s most important to them?
- What fears or concerns do they have?
- What medical treatments and interventions do/don’t they want?
- Where do they want to spend their last months or days?
- Do they have an Advanced Care Directive?
Through these conversations, you can explore your loved one’s expectations and empower them to make their own choices. This will ensure you can honour their wishes, even if you don’t personally agree with them. Jacqui explains that these conversations can take many different directions.
Some common themes that may arise include:
- A desire to make decisions based on quality of life rather than quantity of life.
- Some people will want to know what’s ahead, while others wont.
- A bucket list that hasn’t been spoken about before.
- Sadness at the thought of missing out on a significant life event, such as a wedding or birth of a child.
Chatting through these issues allows you to support someone in a positive way. It’s also important to have these conversations regularly, as some wishes may change.
As a next step, Jacqui recommends helping your loved one to feel a sense of self-worth. Reflecting on their life and all they have achieved is one way to do so – you can do this by writing down their stories, recording them speaking, reliving memories or encouraging them to write letters. These things remind your loved one that they have made a difference.
But sometimes, simply sitting with them in silence is the most supportive role you can play.
If you find that your loved one does not wish to talk at all, you can try seeking out support from a third party. Your loved one might be more comfortable speaking with someone like Jacqui or a health professional or their religious minister, as they may not want to burden you and these professionals are trained in how to have and manage these sensitive conversations.
- Honest conversations will make the journey easier in the long run
- You don’t have to cover everything in one conversation
- It may take a few attempts before you or loved one feels ready to talk
- If your loved one does not want to talk, their choice needs to be respected
Who do you need on your palliative care at home team?
Understandably, many people do not know what is involved in planning for the end of life. This is even more difficult if you are making decisions for someone else.
Once you know what is important to your loved one, you can narrow down which type of care is most suitable.
If their preference is to pass away at home, there are many support services available. An end of life support team may include:
- Medical help from doctors, specialists, nurses and allied health professionals
- Home-based palliative care
- Home-based respite care for your primary carer (this could be your spouse or child)
- Emotional support from community services or an end of life doula
The primary aim of palliative care is to maintain quality of life through the normal process of dying. Palliative care can occur in a range of settings, including your own home.
The professionals you choose to engage should be there to meet your loved one’s health needs, as well as their psychological and spiritual needs. You can find more information about the available support services and the cost of care in our Dying At Home guide.
As you are making plans for end of life care, some things to keep in mind include:
- Encourage them to document their wishes to ensure their family, carers and doctors can act in accordance with their choices
- Remember their wishes may change, so check in regularly to see how they are feeling
- Be open to a plan B, in case things do not play out as you both intended
- Have someone to support the primary caregiver, so they do not burn out
What to do if you’re feeling overwhelmed
Thinking about death is not an easy task, and right now you may be feeling overwhelmed. The first thing to do is give yourself time.
We recommend downloading the Dying At Home guide as a reference you can come back to when you’re ready to talk to your loved one. It has a number of practical resources and palliative care contacts that you can keep on hand.