Talking about death won’t kill you

After about 50 years of marriage, Wendy is finally beginning to scratch the surface of what I want. I suspect the answer lies somewhere between conversation and chocolate, but the other day she asked me a question I did not fully understand.

“Where would you like to die?”

“I’ve never thought about it.”

“Who knows what you would want if you could no longer tell them?”

During the gazillion conversations we have had over the years, we have talked about weddings, births, holidays, work, children, grandchildren and more movies than either of us can remember. Yet we had rarely spoken about the one event guaranteed to happen to us both.

Death.

We prepare carefully for almost everything else. Why, then, do so many of us arrive at death frightened, uninformed and unable to talk about it?

We should not dwell upon death, but avoiding the subject can leave difficult decisions to frightened relatives at the worst possible moment.

Wendy has spent much of her working life as a nurse. She has seen death arrive, and she has seen it arrive amid confusion, fear and unfinished conversations. Over time, she became increasingly interested not only in the medical care of people approaching death, but in everything that happens around that care.

Who speaks for the dying person when they can no longer speak for themselves? Does the family know what that person wants? Have they discussed where they would prefer to be cared for, who they would like beside them, what treatment they would accept, and what they would rather avoid?

These are not medical questions. A former nurse is not a qualification to being an end-of-life doula. It does not replace a doctor, nurse or palliative-care team. The role is simply non-medical. It is about providing practical information, emotional support and companionship to people who are dying and to the families around them.

Sometimes that means helping someone begin a conversation they have been avoiding. Sometimes it means encouraging them to record their wishes before illness takes away their ability to express them. It may involve helping a family understand what to expect, discussing who should be present, or simply sitting with someone when there is nothing left to fix and no useful words remain.

Maybe it’s to sit with them without agenda, not wanting to change things, just to be beside them.

The work can also involve very ordinary things: arranging favourite music, gathering photographs, helping someone write letters, recording stories for children or grandchildren, or creating a memory box. None of these things stops death. They may, however, allow a person to remain more fully aware as death approaches.

There is also support for the family. Relatives can become exhausted, frightened and uncertain. They may not know whether to speak, remain silent, touch the person, leave the room or stay beside the bed. A doula can offer reassurance and help them feel less alone in a situation for which most people have had little preparation.

Wendy’s interest grew from what nursing had shown her. Medical care can do a great deal, but medicine cannot answer every question raised by dying. 

Those questions belong to the person and the people who love them.

In the courses Wendy conducts, she encourages people to speak openly about death before a crisis forces the conversation upon them. Participants examine their own fears, consider what matters to them, and think about the choices they may one day have to make for themselves or for someone close to them.

Many arrive believing the subject will be grim. Some are afraid that talking about death will somehow invite it in. But the opposite often occurs. Once the subject is named, it becomes less mysterious. People begin to see that preparing for death is not the same as giving up on life.

It can be an act of consideration.

When people make their wishes known, they lift part of the burden from those who may later have to make decisions on their behalf. They give their families something more reliable than guesswork. They also preserve a degree of choice at a time when many choices may already have been taken from them.

There is no single version of a good death. For some people, it may mean being at home. For others, it may mean being in hospital, surrounded by skilled care. Some will want family around them. Others may prefer quiet. Some will draw comfort from religion or ritual; others will not.

The purpose is not to prescribe the right way to die. It is to make room for people to consider what the right way might mean for them.

Wendy once asked me where I would like to die. I still do not have a neat answer. Perhaps that was not really the point of the question.

The point was that she had asked it, and that we had finally begun the conversation.

If you’re interested in learning more about this death stuff, Wendy is running a series of comprehensive online courses. You can speak to her on 0408 024 045. Dying to Know Day is coming up on August 8, and there will be conversations held on that day about the concept of the conversations that can be held any day of the year.

Wollongong City Libraries will host a Dying to Know Day event at Warrawong Library for ages 18+ on Wednesday, August 5, at 1pm. It's free and attendees will hear from end-of-life experts including Paul Gooda of the city's Memorial Gardens and Cemeteries.