At 92 years old, Lorraine’s father, Jim, was an active great-grandparent and community volunteer, yet he meticulously maintained a grey folder documenting his end-of-life wishes. And according to Lorraine, he liked to remind the family about it at every available opportunity – over a period of 20 years!
Ultimately, it was this open and ongoing dialogue that led to a ‘textbook case’ in advance care planning when Jim’s health deteriorated suddenly and he was admitted to hospital with severe pneumonia.
As Lorraine describes: “On the Saturday, he was driving his car and running bingo at the local RSL, and on Monday he looked decidedly unwell and we were taking him to hospital.” On admission, the treating doctor was uncertain whether Jim would survive the next 24 hours and asked Lorraine if the family had discussed his preferences for emergency medical treatment.
On reflection, Lorraine recalls a very straightforward conversation. “I identified myself as the substitute decision-maker and advised the doctor my dad had an advance care directive. In that moment, I saw her shoulders relax and it just opened up the lines of communication.”
Lorraine says that Jim had filed “every bit of paper possible” in his grey folder, addressing a diverse range of matters – both formal and informal. “He didn’t take out a paid funeral plan, but he chose a venue and music for his service, and he even left instructions for notifying Veterans’ Affairs of his death.”
The folder also contained a number of official documents, such as birth and marriage certificates, and an advance care directive counter-signed by Lorraine and her husband. In addition to nominating Lorraine as his substitute decision-maker, Jim’s plan also provided a detailed account of his treatment preferences. “Basically, he didn’t want medical intervention – no tubes, machines or anything attached to his body. He didn’t like the thought of people seeing him unwell or of not being able to recognise his great-grandchildren.”
In line with these preferences, Jim was kept comfortable until he died in hospital a week later, surrounded by his family. Although this week in hospital, and those that followed, were overwhelming and stressful, Lorraine never doubted she was acting in Jim’s best interests and according to his wishes.
While Jim’s dedication to maintaining written documentation was extremely helpful, Lorraine says that two other aspects of advance care planning were also important – communicating the existence and contents of the plan to others, and careful consideration of a substitute decision-maker.
On the topic of communication, Lorraine says: “Dad just talked and talked to everyone about end-of-life matters – to my mum, to my brother and his wife, and even to my children and their cousins. Sometimes, we rolled our eyes at him, or we got into lively conversations over certain details. But his wishes were always fresh in our minds, and we were all on the same page. In many ways, he was ahead of his time discussing death so openly.”
Although Lorraine is the eldest child, she says this was of little consequence to Jim when choosing his substitute decision-maker. “It’s important to choose someone who lives nearby and is confident to speak up at the right time. In our family, I’m probably seen as the most reliable – or bossy – and I have experience working in the aged-care sector. In many ways, I’m a lot like dad.”
And when it comes to her own end-of-life decisions, Lorraine muses that the apple doesn’t fall far from the tree. “I’ve got a folder containing all my bits and pieces, just like dad did. But it’s not grey – and it’s saved on the computer!”
* Names and personal details have been changed for privacy reasons.