There has never been a more critical time than now to think about who you would want to speak up for you should you become sick and dying, and what matters to you most
“Contemplating one’s death may be the most profound form of meditation. Death is the backdrop of life, and at times like this it comes to the fore.”
These are the word of American physician and palliative care advocate Dr Ira Byock in response to the crisis we find ourselves in across the globe.
Without doubt, Covid-19 has made us contemplate our own deaths in a way we haven’t had to for several generations. While we have so far been spared the volume of deaths witnessed overseas, through the media we have learned a lot about what people are going through. We have also heard the stories of 20 New Zealanders (at the time of writing) who have sadly died.
Among these are tragic accounts of people of all ages who have deteriorated very quickly and died, even when they have received the best and most appropriate medical care available.
Often, in this kind of situation, health care professionals talk about ‘planning for the worst and hoping for the best’. This might involve challenging but honest conversations about what is important to you, what you value most and what treatments can and can’t be offered. Dr Peter Saul, an intensive care specialist from Australia, calls this “speaking the truth with kindness”.
However, for some families, these conversations will have been made more difficult by not knowing what their family member would have wanted in this situation. Indeed, our research shows that many of us don’t think – or talk – about our end of life preferences, until it is too late.
There has never been a more critical time than now, in the midst of a pandemic, to think about who you would want to speak up for you should you become sick and are dying. Will those whānau closest to you know what you value most? Do they know what is most important to you? Will they know what kind of treatments and care you would or wouldn’t want if you become critically unwell? What would a ‘good’ death mean for you?
And we would argue that you shouldn’t wait until you are really sick or at the end of life to have these conversations. You can talk to friends, families and whānau about what you value, who is important to you and what is most important to you now. Some people prefer to write these things down so others will know what they value and what they would prefer to happen if they get really unwell and might die. Other people prefer just to talk about it with their family and or whānau. For others, chatting about what matters most to them with their GP, nurse or other health care professional can be helpful.
In Aotearoa New Zealand, this is called Te whakamahere tiaki i mua i te wā taumaha or advance care planning – the process of thinking about, talking about and planning for future health care and end-of-life care. It’s really all about identifying what matters most to you.
This can mean anything from thinking about who you would want to speak on your behalf if you weren’t able to speak for yourself – but it can also mean thinking about the things that matter most to you – things like: What makes you happy and what brings you joy? What routines do you prefer? What and who you would want with you if you needed to go to hospital? What things matter to you from a cultural and/or spiritual perspective? Where would you want to be cared for?
It might be just talking through and or writing down what worries and concerns you most.
Research by our group has shown that many people write their advance care plan down because they want to be more in control of what happens to them. Another key motivator is easing the burden of making these difficult decisions on family and whānau. If these are the kind of things you have been mulling over you might find the Health Quality and Safety Commission information and tools helpful.
Dr Aileen Collier, Professor Merryn Gott, Associate Professor Michal Boyd, Associate Professor Rachael Parke are from the Te Ārai Palliative Care and End of Life Research Group, School of Nursing, University of Auckland.