Advance care planning in people over 85 years: what it tells us about their quality of life
An article written by Xanthe Sansome
As we get older, what is important to us changes or becomes clearer. From our twenties we are building a career, family, a home, and our future. To a certain extent, we are ‘in control’ of our decisions and our way of life. Eventually, our kids grow, our mortgage is paid off, and we are enjoying retirement.
Over time, our ability to ‘do what we used to do’ reduces while our visits to medical centres, pharmacists, and hospitals increase. We may become a bit more forgetful, require more help in the home, or need to move to an aged care facility. Perhaps not surprisingly, what is important in our 80s and 90s is very different to what was important in our 30s, 50s, or 70s!
Throughout these changes we will experience the deaths of parents, friends, or partner and become more acutely aware of our own mortality. Hopefully we ‘have our affairs in order’, which includes writing a will or prepaying our funeral, and it should also include ensuring we have appointed someone to be our decision maker and engaging in advance care planning.i
Preferences written on advance care planning documents of people aged over 85 years provide an insight into what matters most to these individuals and what quality of life means for them.
The five most documented themes that people over 85 years ‘value and enjoy most in life’ are family, independence, faith, hobbies/activities, and dignity. These mean different things for different people and are best described with their own words:
- “Getting about, visits by family, communicating my thoughts, managing my own life.”
- “My dog, my Bible, and dark chocolate.”
- “Waking up every day, my family, gardening, listening to music.”
- “Because I’m blind, all I want is people telling me who they are and why they are in my room.”
Words written about ‘unacceptable situations’ may provide clearer insight into what quality of life is not:
- “Pain, being dirty or lonely, going to hospital.”
- “Not being able to recognise family. Noisy environments.”
- “Inability to talk, walk, toilet and shower. Loss of dignity.”
- “Prolonging life without improving quality. Incontinence. Being bed-ridden.”
- “Being a burden.”
People over 85 years have realistic and achievable views about what they would want near their end of life:
- “Adequate pain relief.”
- “Favourite [things/sensory comforts]” including pillow/pet/music/flowers/rum/photos/views.
- “Family holding my hand.”
- “Open curtains.”
- “Prayer from [religious leader].”
- “The right to die naturally, peacefully, with dignity.”
While 80 to 85 percent of people over 85 years indicated they would not want cardiopulmonary resuscitation or other life-prolonging treatments, it is these personalised statements about what quality of life is and is not that provides the most profound insight into how people over 85 years want, and deserve, to live and be treated right up to their final breath. The most important aspect is whether they can still enjoy quality of life as they deem it.
Read more on how advance care planning informs quality of life on the Advance Care Planning Australia website.
i Advance care planning is a process that encourages us to think about what matters most to us, how we want to be cared for, and what medical treatments we would or would not want to receive. Talking these things through with our loved ones and doctors and writing our preferences down will remind everyone providing care who we are as an individual, what brings joy to our life, and what our preferences for care and treatment are. If we couldn’t make or communicate our preferences, due to illness or an event, others would know what to do from the words on our advance care planning document.
Xanthe Sansome
National Program Director
Advance Care Planning Australia