Advocating for your loved one becomes increasingly important as they approach the end of their life. Speaking up for their wishes, choices and changing needs helps to ensure they receive the right level of care for a comfortable and regret-free end-of-life experience.
As their advocate, your loved one will need you to be their eyes, ears and voice. So understanding what to look for, when to listen, and how to speak on their behalf can help you confidently act in their best interest when they are most vulnerable. It's a skill that you'll develop over time. And the more you practice, the easier it will be.
Keep your loved one's voice front and centre
Giving your loved one a voice in their last stage of life can be your greatest gift to them.
Violet Guide Marian said speaking on behalf of a dying person when they cannot speak for themselves, and acting on their behalf to address their concerns, can make the last stage of their life more manageable.
They may feel vulnerable as doctors, and medical staff explain their diagnosis and end-of-life care, so do your best to help them ask questions and get the answers they need.
Violet Guide and Trainer Rose said it's vital to involve the dying person, even if they aren't physically able to talk.
"Nothing should be discussed or decided without their permission. They are losing enough, without losing control of decision making!"
Have open and honest conversations
Effective advocacy starts with meaningful conversations. Getting vulnerable and stepping bravely into tough conversations about the end of life will help you understand what your loved one wants and hopes for.
Be mindful that while you may not agree with your loved one's wishes, your role as an advocate is to help them make the most of the time they have left. It's your responsibility to protect their rights, so you may need to put your own beliefs and needs aside.
Rose said it's really important to be respectful of the person you are caring for. "You can't advocate for someone unless you've had lots of conversations and deeply understand what they value, what they want, and what they are fearful of,” she added.
While it may be an uncomfortable topic, getting to know your loved one's preferences for care will make it easier for you to communicate them with family, friends and medical staff.
Listen and record
Active listening is a crucial part of advocacy. To make the most appropriate decisions for your loved one, you'll need to listen intently in your private conversations and conversations with their care team.
Repeat, paraphrase and reflect the critical parts of a conversation to help you understand and avoid confusion later. For example, try mirroring what you hear with phrases like "What I think I heard you say was…" or "I just want to make sure I understand you correctly…".
Pay close attention to what is being said, and not said. No matter how deeply you listen, taking notes is always a good idea. Writing down the details will help you collate dates, times and questions so you can process the information and take the necessary action later.
Ask until you're clear
There can be a lot to take in when you’re advocating for someone in the last stage of life. And it's vital that you understand exactly what is happening as the situation evolves.
If you don't understand something, make sure you ask for clarification. If you still don't get it, ask again. Be tenacious but respectful. And don't give up until you get the answers you and your loved one need.
Janet Foster, who cared for her ex-husband Ian for nine years, found that asking questions gave her perspective and helped her feel less alone. "Just ask questions. Nothing is ridiculous. This is your journey, and they (medical staff) are there to give you support. It will give you the resilience to help your loved one who is ill and other family members at this time," she said.
Palliative Care and Geriatrics Locum Doctor Dr Renee Lim recommends writing questions down, even if you think you'll remember them.
She said, "What often happens when we're asking questions is we get loaded with anxieties. Have I asked the right question? Will I get the right answer? We get scared we'll forget something, so writing your questions down is a useful way to keep everything in mind."
Dr Lim added that more specific questions help you answer the question you didn't know needed answering. For example, you can ask questions like:
- What will my loved one experience?
- What physical signs or behaviours should I look out for?
- Has my loved one needed any additional medication?
- Are they in pain?
- How did they sleep overnight?
- What are you most worried about?
- Have they been able to speak today?
Bring others into the conversation
Advocacy doesn't happen in a silo. Every person involved in your loved one's care should be aware of their needs and wishes. Working with others on advocacy also means you don't have to carry the burden alone.
Dr Lim said, "You don't have to solve it all yourself. Pass the information on to someone else. Tell your family or friends."
Janet said that being the information keeper for the family can feel overwhelming but sharing the information can ease the load. "I'd talk to Ian about what was going on. And my son made an effort to come home and live because he wanted to spend the final days with his dad. We also did video calls, so distant family felt like part of it," she explained.
Rose said it's essential to spend time getting to know the important people around the dying person, including paid carers and clinicians.
"Everyone is on the same team and has the same ultimate goal (that the person's experience will be as close to what they want as possible). It makes it very difficult if the caregiver is aggressive or judgmental about others. Work together as a team. If things aren't going well, explain your concerns and find an answer."