Death. Dying. End of life. Terminal. Palliative care.
End-of-life care wishes and expectations need to be conversations that happen long before a rapid decline in health occurs.
These are scary words, and scary subjects, there’s no denying it. Death is the one thing we can all be sure of, yet many of us avoid talking about death and dying altogether.
Maybe it’s because we are afraid to face tough emotions. Maybe we can’t bear to say the words end of life or death and dying out loud because we’re scared that will make them real. Maybe talking about death is scary because it reminds us of our own mortality.
Sometimes our fears of talking about death and dying are linked to messaging we’ve had since childhood. For example, being told not to ask grandma too many questions about grandpa’s death because it would make her too sad.
Or, if your family talked about the death of family members or friends in vague terms or with little explanation, or hid their grieving process (with good intentions of protecting you), you might be conditioned to think of death and dying as taboo topics.
Maybe it’s a combination of all of these reasons.
Changing your perspective
Here’s a perspective to consider that may help. Once we are fully conscious of our own mortality, you can be filled with gratitude. Gratitude for every day that we are here, and to celebrate the lives of those we love — both now, and when they have left us.
End-of-life care wishes and expectations need to be conversations that happen long before a rapid decline in health occurs. If you’re a caregiver, the person in your care may even want to talk about death or end of life, but feel afraid that it will upset you too much.
By breaking the silence, we are setting the stage to make decisions based on our deepest values about life and death. We are also more conscious of our gratitude to be here, sharing time with each other. See also our Elizz article on Understanding the Dying Process.
Caregivers – where to begin
Start by taking a deep breath. Allow the family member or person in your care to share their end of life wishes with you. This doesn’t need to happen in just one conversation. Start with how they envision their end of life care in an ideal situation.
Ask them to share their beliefs about what happens when we die. Write down what they say each time you have these conversations, as you will want to remember the details later.
Once you both begin to feel more comfortable talking about death and dying, begin asking about the practical things that may need to be acted upon. Talk about their will, any health care directives, and even their wishes for a memorial service — songs, flowers — anything that will enable you, as their caregiver, and the family to honour their life according to their wishes.
If someone you care for has been told that they are facing the end soon, tell them how much you will miss them.
Thank your parent for the things they have taught you and meant to you. Remind your friend of the great times you’ve had together, even the not-so-great ones. Make sure they know that their life and what they have contributed will be celebrated when they are gone, not only mourned.
For caregivers, it may never become “easy” to talk about death and dying, but it is easier to have these conversations before someone is facing end of life or an advanced state of illness.
When facing death, a person may become more withdrawn and quiet, or isolate themselves. This is normal behaviour that can be expected when someone is dying (or near end of life), which can make some conversations more difficult.
However, it is also normal for a person to perhaps change their mind about something or have a past regret that they suddenly want to resolve.
The person in your care may feel ready to let go, particularly if they have a lot of ongoing pain, but feel afraid that their loved ones would be too upset to hear this. As difficult as it may be to accept, telling someone that it is okay to let go at this stage may be one of the greatest gifts you can give them.
Sharing your experience with death and dying
During National Advance Care Planning Week in 2016, Saint Elizabeth launched The Reflection Room, a space where people can pause, recharge, and share their stories of dying and death and the stories of others. The Reflection Room project is led by researchers in in the Saint Elizabeth Research Centre, and it is comprised of an online “Room” as well as travelling Reflection Rooms that will be installed in public spaces such as art galleries, shopping malls and libraries, as well as in hospices and hospitals. Its innovative approach uses the power of shared storytelling and participatory public art practice to help people think and talk about the end of life.
Visit The Reflection Room to read stories from others about their experiences around end of life, and consider sharing your own story too. Does an experience with dying and death stand out in your memory? Have you been inspired by others? Have you had experiences with family members or friends?
See also our Elizz articles on the Role of Palliative Care Teams and Palliative Care for Children.