It’s important to seize opportunities to discuss end-of-life options with loved ones, a palliative care doctor tells
It's a subject matter that can send the majority of us scurrying to stick our heads in the sand.
We have become so far removed from the D-word, death, that we use phrases like ‘passed away’ or having ‘lost’ our loved ones. And yet while we happily celebrate our birthdays, it is the acknowledgement of that final date that allows us to “see living as precious,” says palliative care doctor Kathryn Mannix, who has been witnessing people dying for almost four decades.
Kathryn’s bestselling book,, portrays a cross-section of dying patients— composites of real people she’s met over her medical career, in beautifully written real-life short stories.
As well as being a pioneer in palliative care and on a mission to make us more comfortable with dying, she brings a descriptive and narrative skill — laced with huge compassion — that draws the reader in emotionally.
As we become invested in those patients, and how they deal with difficult situations, we also learn how to recognise what the natural process of dying looks like, its normal patterns — an experience that our parents and grandparents took for granted, up to the second half of the 20th century, but which has become lost in an age of technological advancement.
“Watching dying is like watching birth: in both, there are recognisable stages in a progression of changes towards the anticipated outcome,” she says. “Mainly both processes can proceed safely without intervention. In fact, normal birth is probably more uncomfortable than normal dying, yet people have come to associate the idea of dying, with pain and indignity that are rarely the case.”
We have lost touch with that fact, however — a wisdom driven by experience in the past. “Instead of dying in a dear and familiar room with people we love around us, we now die in ambulances and emergency rooms and intensive care units, our loved ones separated from us by the machinery of life preservation,” she writes.
At the end of each themed section in the book, Kathryn also asks us to stop and think about what we would want ourselves, in a bid to get the conversation going — to think about what options we would like to have for our own final stages. Because, as she tells:
This may be a bit of a spoiler, but we are all going to die. Every single one of us. No choice! But there are choices to an extent, around the way we live — while we are dying. These are worth thinking about, and discussing with our most trusted people, while we have energy and health.
The chances are, we may have ideas somewhere in the back of our minds about what we would wish and we think we will decide ‘when the time comes’, she says. “But the thousands of dying people I have looked after found the time never came to sort it out — just one day, they were too frail or too sick to carry on as before, and they had no energy left to consider the options,” reveals Kathryn.
So how do we get the conversation going? “Sometimes it’s hard to know when and how to start,” says the UK-based physician. “My advice would be to use any passing reference to death to seize the moment. In response to storylines on TV shows, or the news or in the newspapers, my husband and I have discussed a range of death-related matters with our family — our preferred place of care, our wish that the surviving spouse should re-marry — that one shocked the kids!— our funeral wishes, organ donation and CPR (cardiopulmonary resuscitation).
We wrote our will when our children were small and really should get around to updating it. So we’re not perfect, either…
But because death has been normalised with her children — who are now in their 20s, she says: “It’s been very reassuring to watch them at the bedsides of beloved family members who were dying. They have been able to make gentle conversation, allow long silences, rub hand cream into weary legs and arms, and simply be present.”
Another gift that “keeping the end in mind” brings, is an appreciation of the present moment. “The whole of our lives is simply a series of passing moments. I walk through the park beside my house almost every day to pick up milk and a newspaper,” says Kathryn.
“It’s a daily pleasure to observe the trees as they move through the seasons, watch the birds, see the sky reflected in the river, smell the fresh air and feel my legs holding me up and striding out. One day, I know, this strength will only be a memory. I’m relishing it in the ‘now’.”