• Generally speaking, facing up to our own mortality is something that we find challenging

  • But having these hard conversations in advance can help you when the time comes, explains Dr Magnolia Cardona

  • For some, death anxiety can be crippling – if this resonates, find a therapist here

Have you ever wondered what it would be like to have control over how you die and where? If you had the opportunity to plan those details to help you prevent suffering in your last days, would you like to get involved?

We can’t know for certain when we will die, but for older people with chronic irreversible illness there is an unspoken – or speculative – understanding that their years are numbered. Some of us would challenge that prognosis by trying different treatments and lifestyles hoping for a miracle; some of us would ignore the shadow over our heads and live life to the fullest so we have no regrets when we look back; and some of us would just grab the news like a bull by the horns and face the fact that we should be prepared for when the time comes.

Preparing with friends and family

An important part of the preparation includes telling your family about your personal values; what matters most to you: quality or quantity; how far you are prepared to undergo invasive procedures like life support machines; and where you would draw the line and let go because it will not make a difference to your survival. These are known as end-of-life conversations to prevent over-treatment and to facilitate delivery of treatment aligned with patient’s goals; they often precede a formal advance health directive. But moving from an informal discussion to a legally binding document with specified wishes takes thinking time (weeks or months) and sometimes people don’t take the step towards action.

Unfortunately, these sensitive conversations tend to happen not so much among family members soon after a diagnosis, but between clinicians and patients – or their families – at a time of critical illness when patients are approaching the end. Putting these thoughts on paper in advance can facilitate decisions and potentially save some pain, guilt and regret, unless a relative overrides the patient’s wishes by requesting clinicians to prolong a life. It also happens that families disagree with the patient’s last wishes and can’t face losing a loved one.

Our true accounts in the book When the Time Comes – Stories from the End of Life are mostly set in hospitals or aged care facilities because that is where many older people with chronic illness spend their last days and where these harrowing decisions need to be made. One of the chapters has a focus on when not for resuscitation is appropriate. Other chapters highlight the need for better understanding of what goes in the advance health directive. Recently the overwhelming number of people going to hospital as a result of Covid-19 has put pressure on staff and may have deprived some patients of the opportunity to discuss personal preferences if there was no prior evidence at the time of admission, so there may not have been time for contemplation on treatment choices; or these discussions may have been hasty to cater for the demand for services. The very important Public Health prevention and control measures imposed in hospitals and nursing homes such as restricted number of visitors and restricted time with loved ones has driven compassionate nurses and social workers to take the role of families in holding patients’ hands and offering companionship to prevent patients from dying alone. We hear also about families saying their goodbyes virtually with the help of kind-hearted clinical staff who enable these farewells.

As the impact of the pandemic waves continue to be felt, with the pressure of the health system to accommodate so many critical patients, and with reduction in staff numbers due to illness, it is likely this crisis has resulted in reduction of over-treatment near the end of life. Time and research will tell whether this  change has been observed and to what extent this has benefited patients or satisfied families.

Dr Magnolia Cardona and Nurse Ebony Lewis are the authors of When The Time Comes – Stories From The End of Life  

Further reading

13 things I've learned about death

Could thinking about death improve your life?

How to navigate hard conversations after a terminal diagnosis

Understanding death anxiety triggered by the Covid-19 pandemic