Dying to talk about death

Say them quickly, then forget. The dying words. Terminal. Dead. Deceased.

Friends and acquaintances die every day. We go to their funerals, but we try not to think about death.

Most of us have never spoken to a dying friend about death. We ask how they are and then talk about everything else rather than how they feel about what they are going through. It makes us uncomfortable. And it hurts to lose a friend.

We forget that the dying may feel abandoned when they most need our empathy. We choose not to confront that finality with them, not because we lack compassion, but because someone else’s death forces us to contemplate our own.

Talking about dying seems to be the work of somebody like Dr Sean Davison, who helped his mother in New Zealand to die and paid a heavy price for it. Or it is the work of hospice staff, or those who deal in death anyway, such as doctors – many of whom are not of Davison’s calibre.

In San Francisco last month, a family reunion was marred by the death of my daughter’s good friend, Erica. She had died hours before our arrival after a three-year struggle with breast cancer. She fought hard for her life. At 42, with two young children, she had much left to do. It wasn’t to be.

Victims of terminal illnesses appear to find resources in themselves that they and their families didn’t know they had. Some almost become different people.

Erica came to accept the inevitable, yet also rejected its dreadful finality. She couldn’t accept that she was leaving her children forever. Despite her duel with drugs and pain, she felt an immense pressure to make her days count, to spend time with her family during well-loved getaways, to travel to exotic destinations. Instead, as her health deteriorated, she found it difficult to be around her children, and even the thought of leaving home exhausted her.

Between extended bouts of chemotherapy, Erica wrote in her blog about her heightened sensory awareness: binocular vision in which colours sharpened and sounds increased in volume to the point when even birdsong seemed too loud. She found pleasure in nature, but was often overcome by a frightening sadness and apathy. Her seesawing emotions, she wrote, were not contradictory but existed side by side, more so as it became clear her time was running out.

An acquaintance mourning a friend who died of cancer tells me that the friend fought like mad, hoping for a cure and suffering pointlessly through ghastly treatments.

A recently widowed woman confides that her oldest friends are avoiding her. “They are the people who know me best, yet they don’t know what to say. They don’t need to say anything, but it would be nice if they would listen; if I could talk about it.”

An emergency room doctor in a public hospital recently wrote in the New York Times about her experiences with terminal patients and with her colleagues. “They treat the illness. Keeping a terminal patient alive seems more important than ensuring that the patient is made as comfortable as possible.

“It’s not the patients who must change, it’s us, the doctors. We need to become human beings treating a fellow human being who, given the choice, may choose palliative treatment rather than aggressive support of failing organs.”

In his recent book, Being Mortal: Medicine and What Matters in the End, Atul Gawande, a Boston surgeon and New Yorker writer, explores illness and death, suggesting that we exalt longevity over quality of life. There are two issues here. The first is the care of those who have been granted great longevity. The second is how the decline of the body is managed when there is no cure for its affliction.

We can keep people alive for longer than ever before, but we have not developed the essential skills involved in palliative care for those who become dependent because of serious illness or old age. Building compassion among staff and a caring hospital environment does not cost more, and the benefits in terms of improved quality of life are considerable. Sometimes, Gawande writes, the most humane decision is to do nothing.

Helping patients to a good death can be the greatest gift an attending physician can give his patient, yet doctors routinely overestimate how long a terminally ill patient has to live – and oncologists rarely confess to a patient that there is no more hope.

Family and friends can play a significant role: listening compassionately and communicating lovingly while there is still time. We would all choose a quick death if we could, but for some of us that won’t happen. We should talk more about it. We’re all going to die. We should make death and bereavement more manageable for those we love, and for ourselves.

Rosemund Handler’s most recent book is Us and Them (Penguin)

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