When Sue* was in her late 30s, she was diagnosed with Crohn’s disease, a condition that causes chronic inflammation of the bowel.
Because of the severity of her disease, along with the onset of complications like arthritis, Sue has to visit hospital once every eight weeks to receive a drug infusion that lasts four to five hours. While she initially persevered with work following her diagnosis, Sue has since had to give up her career as an early childhood educator – a role she describes as “incalculably rewarding”.
Although only 50 years old, Sue has found herself having to think about her goals, wishes and preferences for future healthcare and end-of-life matters at a much younger age than most, because of her chronic illness. She describes this task as difficult but essential to her peace of mind: “Planning to die is incredibly challenging. Even planning to be incapacitated is really hard. It’s not something you willingly do. It’s easier to put those thoughts off, rather than attempt to think about what you want.”
Nevertheless, Sue has faced this challenge head-on because she believes advance care planning is critical for ensuring that her values will be upheld throughout her future care. “No matter how difficult it is, I know it’s really important to have the conversation. From my diagnosis onwards, I’ve had open and frank discussions with my family about what my illness means for my health care down the track. I’ve told them that if I physically can’t care for myself, I don’t want to endure life-prolonging medical treatments. I just want palliative care. Those are my wishes.”
For Sue, the process of thinking about advance care planning is ongoing and she has expressed her wishes to her family on many occasions. Her husband and two daughters, who are aged 18 and 22, are very open and supportive of these conversations, says Sue. “As a family, we have had lots of discussion around what will happen towards the end of my life, and what my preferences are. My family is fully aware of what I want and respect the decisions I have made.”
Although Sue had already begun thinking about end-of-life matters and started the conversation with her family, she says she was also encouraged to address these issues by her general practitioner (GP). “My GP raised the subject of advance care planning with me. It’s not something we’ve had detailed discussions about, but he knows my general preferences.”
While she has not resisted discussing this topic with her family, and even some friends, Sue has not yet formalised her wishes in an advance care directive, nor has she informally documented her preferences in writing. Sue says that it has been difficult to prepare a formal, written document without proper guidance, which has been a barrier to putting something in place.
Sue believes that having an advance care directive is beneficial for both her and her family. “Discussing my values openly means that people have clarity about my wishes. If I’m unable to speak for myself, I know my preferences will be respected. It also makes things easier for my family because it prepares them for making these decisions for me. When the time comes, they don’t have to think about what to do or worry about their decisions being right or wrong.”
And while thinking about end of-life matters can be hard, Sue encourages others to consider and discuss their personal preferences for care with loved ones. “Advance care planning is not an easy thing. It’s really difficult and challenging – these are things we don’t willingly want to talk about. But it’s a valuable conversation to have. It needs to be done to give people relief when their loved one’s health deteriorates. It’s not always easy, but it should be done.”
* Names and personal details have been changed for privacy reasons.