Why talking about end of life care matters

If you want to be cared for the way you choose at the end of your life, then it's important to start advance care planning.

Our culture doesn't like to talk about dying, but what better time than palliative care week to get started. It’s time to share the way we would want to live at the end of our lives.

A/Prof Josephine Clayton Staff Specialist in Palliative Care, HammondCare and Associate Professor of Palliative Care, University of Sydney shares some advice about developing an ACP below.

Advance care planning – what is it?

Advance care planning (ACP) is about enabling a person to talk to their family, friends and health care team about the type of care they would want if they became critically ill or injured.

Why talking about end of life care matters:
  • It helps clarify what’s important to you.
  • It makes it more likely your wishes will be respected at the end of your life.
  • It helps you prepare for dying, something that’s really important for people who have been diagnosed with an advanced life-limiting illness.
  • It takes some of the stress and worry off the shoulders of your family and friends.
  • It encourages you to talk with your family about what matters.
  • It can improve the quality of your end of life care.
Who should consider developing an advance care plan?

Any adult can choose to begin this process when healthy, before an unexpected health crisis. Developing an Advance Care Plan can be particularly helpful for:

  • People diagnosed with a life limiting illness or serious chronic illness.
  • A person whose doctor would not be surprised if they were to die within 12 months.
  • Any person admitted to a Residential Aged Care Facility.
  • People over the age of 75.
  • Any person requesting to discuss ACP.

Challenges

  • People’s wishes may change over time, and so it is important to keep the dialogue open, ensuring that peoples’ wishes are recorded and updated.
  • Not all people want to discuss their wishes for future care, so the topic needs to be broached sensitively.
What’s involved?
  • Speaking to your loved ones and health professionals about your goals and priorities for care and treatment if you were ever to become very sick.
  • It may involve developing some key documents, including: 
  • Appointing a Substitute Decision Maker – you may choose to legally appoint someone who can make health care decisions for you if you ever couldn't speak for yourself. There are some different terms for this in each State. In some states, like NSW, this is called an Enduring Guardian. It's important to talk with your substitute decision maker about what would be important to you if you were very sick.
  • Advance Directive (AD) - A document that describes your wishes and priorities for future care if you ever couldn't speak for yourself. You can also document if there are any treatments that you would or would not want if you were very sick.

For more information, visit: The Conversation Project,  Planning Ahead Tools (NSW) or Advance Care Planning Australia

Questions to think through:
  • Who are the people closest to me that I would want to talk with about my future heath care?
  • Who is the person(s) I would like to be consulted if I were ever in a situation where I could not make medical decisions for myself?
  • How much information do I want to know about my illness and what to expect in the future?
  • How much do I want to be involved in decisions about my future health care? Or would I prefer my doctor or family to make the decisions?
  • What is most important to me about my care in the future?
  • What are my biggest fears or worries about my future with my illness? What are my hopes?
  • Are there any spiritual or cultural beliefs that would be important for my health care team to know about in the future if I were to become very unwell?
  • Are there any personal goals or milestones that I would like to achieve if possible or that might influence decisions about my care?
  • What trade offs would I be willing to make to possibly have more time to live?
  • What can I not imagine living without the ability to do? Are there circumstances that I would consider worse than dying?
  • What matters most to me about my care at the end of my life?

A/Prof Josephine Clayton is Staff Specialist in Palliative Care, HammondCare and Associate Professor of Palliative Care, University of Sydney.