How to share your end-of-life care wishes with loved ones

Thinking about end-of-life care can be a difficult and emotional topic, but it’s one of the most important conversations you can have with your loved ones. To provide a well-rounded perspective on this sensitive subject, we spoke with Megan Asbury, Deputy CEO of Palliative Care NSW. Megan gives expert insights on how to navigate these conversations and make informed decisions about palliative and end-of-life care.

In this guide, we'll also explore what end-of-life care entails, the options available, the role of specialist palliative care services, and tips on approaching these delicate conversations with family members.

What is end-of-life care?

"End-of-life care is really about the last weeks or days of life when someone is nearing the end," explains Megan Asbury. "It helps individuals and their families through that very final stage."

End-of-life care refers to the support and medical care provided during the time surrounding death. The goal is to ensure comfort and maintain the best quality of life possible in the time remaining. It typically begins when curative treatment is no longer effective or when a person chooses to stop further medical intervention.

However, it's important to note that end-of-life care is part of the broader umbrella of palliative care, which can be for anyone with a serious illness or life-limiting illness, not just those in the final days or weeks.

Megan points out, "In many cultures, talking about death and dying is considered taboo. This reluctance to talk openly can lead to fear and misunderstanding."

To help overcome these barriers, Megan recommends exploring online resources that assist in starting conversations with family or friends.

What is palliative care?

"Palliative care can be for anyone at any age with a progressive life-limiting illness, not just for people with cancer — a common misconception," Megan clarifies. "It also supports people with non-cancer-related illnesses such as dementia, end-stage respiratory disease, heart disease, or liver disease."

Focusing on relieving the symptoms and stress of serious illnesses, palliative care aims to improve the quality of life for both the patient and their family members. It addresses physical symptoms as well as emotional, social, and spiritual needs, including mental health support. Unlike end-of-life care, individuals can access palliative care for months or even years, alongside other treatments.

Megan Asbury, Deputy CEO of Palliative Care NSW: "Palliative care is not curative but is often offered alongside other treatments, helping patients manage symptoms and live as well as possible. It focuses on helping you live well by managing symptoms such as pain, breathlessness, and nausea and incorporating psychosocial and spiritual support."

These services can be accessed in various settings:

• At home (including residential aged care)
• In hospitals
• In inpatient palliative care units (sometimes called hospices)

"Care is managed by a team of health practitioners, including doctors, nurses, allied health professionals, and volunteers," Megan explains. "They all work together to ensure you and your family have the support you need."

For complex needs, specialist palliative care services are available. Accessing these services usually requires a referral from a GP or specialist. 

As Megan explains, “It’s recommended you ask questions about the cost of palliative care. Medicare will cover most of your palliative care costs, and private health insurance may contribute to private services you choose to access."

How to decide your place of care

Deciding where to receive care is a personal choice influenced by medical needs, preferences, and available support.

"Think about what matters most to you at the end of life," Megan suggests. "Care can be provided at home, in hospitals, or at inpatient palliative care units — depending on your preference and needs."

When it comes to deciding your place of care, common options include:

• At home: Staying in familiar surroundings with loved ones. Home care often involves a palliative care team providing regular visits and medical support.
• Hospice: Specialises in end-of-life care in a comforting environment, offering round-the-clock care from trained healthcare professionals.
• Hospital: Access to advanced treatments and specialist services. Hospitals offer continuous care from health professionals who manage symptoms and provide grief support referrals to families.
• Aged care home: Provides longer-term care, often including palliative services. Respite care services are available to give family members and carers a break.

When making this decision, consider your cultural care needs, especially for those from linguistically diverse backgrounds, to ensure respectful and inclusive care.

Megan Asbury, Deputy CEO of Palliative Care NSW: "It's important to understand that palliative care is not one-size-fits-all; it should be tailored to meet the individual’s preferences."

Share your wishes with your family

After considering your options and making decisions about your care, the next step is to share your wishes with your loved ones. This conversation can be emotional but is essential for ensuring your preferences are respected.

"We often begin our community education sessions by listing some of the euphemisms we use instead of 'dead' or 'died' — like 'pushing up daisies' or 'passed on,'" Megan shares. "This reluctance to talk openly can lead to fear and misunderstanding."

1. Spend some time thinking

"Consider your values, goals, and what brings you comfort," says Megan. "Whether it's spending time with family, staying at home, or having your pets with you — all these wishes can be supported while receiving palliative care."

2. Talk about and document your wish

"We often emphasise the importance of advance care planning," Megan notes. "It allows you to decide now about the health care you would or wouldn't like to receive if you become seriously ill and can't communicate your preferences."

Advance care planning involves:

• Discussing your wishes with loved ones and health professionals
• Documenting your preferences in an advance care plan
• Appointing an enduring guardian or medical power of attorney

"It's an ongoing conversation," Megan adds. "Your values and goals may change, and it's perfectly fine to update your advance care plan."

3. Share your end-of-life care plan and preferences

"The more your family members understand your preferences, the easier it will be for them to help guide your medical treatment if you lose capacity," advises Megan. "Share copies of your advance care plan with your enduring guardian, family, carers, and doctors."

To help initiate these discussions, Megan recommends:

• Using conversation starters from resources like Advance Care Planning Australia
• Attending community events like Death Cafes to talk openly about death and dying
• Participating in programmes like PalliLEARN for online education

"Palliative Care NSW hosts Community Conversations where community members learn and talk about what matters most to them," she mentions. "We want to empower people to make informed choices, and these conversations can start at home with family and friends."

Keep Reading: Learn more about planning for the future with our guide on the future of funerals.

Having this discussion and making future medical treatment decisions can be challenging, but it's one of the most loving acts you can do for your family. By clearly communicating your wishes and exploring your options for care, you ease the burden on your loved ones.

"Discussing end-of-life care isn't about focusing on death — it's about ensuring you live your remaining time in the best way possible, according to your wishes," Megan concludes.

Whether it's deciding on palliative care, staying at home, or choosing a hospice, communicating these decisions provide can peace of mind for you and your loved ones when the time comes.

It's never too early to start preparing. Regardless of your age or stage of life, discussing insurance such as life or funeral can make these important conversations easier. Taking these steps can help with clarity and peace of mind, leaving your loved ones supported and your wishes honoured when they need it most.