Defining the end of life

The online series A Good Death is a CBC News co-production with students from the Graduate Program in Journalism at Western. | MORE

Rose Hollinsworth is dying.  She was supposed to die this month.  

Rose has terminal esophageal cancer and, in September, was given a prognosis of eight months to live. But she feels she is not quite at the end of life — she moves a bit more slowly and sometimes she doesn’t think as clearly as she used to, but  "I don’t feel like it’s going to be tomorrow or anything."

"I have decided that I don’t want treatments now. That’s why I’m here," she says, while keeping an appointment at Sakura House, in Woodstock, Ont., a non-profit hospice. Hollinsworth is not staying in the hospice — not yet — but it’s where, eventually, she would like to spend her last weeks. 

"She’s very clear about what she wants. She’s very open about discussing her disease and the fact that she’s dying," says Dr. Karen Fryer, the medical director at Sakura House.

Fryer says Hollinsworth can be admitted to the hospice on her own terms — for her, the turning point will be once her husband becomes more her primary caregiver than her husband.

There are medical criteria as well. Patients are admitted to palliative care when they have been given less than three months to live, they have to be lower than 40 per cent on the palliative performance scale and they have to be aware that they are dying. 

Despite her terminal status, Hollinsworth is very much alive. She eats. She visits. She laughs.

So what does it mean to be dying?

Biologically, dying happens right before death — "One or two or three days," says Donna Wilson, a nursing teacher at the University of Alberta. "You start to develop these breathing patterns and your heart begins to fail."

What she's describing is active dying, which has standard criteria, but the dying process — the social and psychological aspects of dying — can mean different things.

There are many ways of defining dying, says Dr. Joshua Shadd, a palliative care researcher at the University of Western Ontario. "But to me, the most meaningful ones are the social ones."

Shadd sees dying as a shift in social roles. He says when someone is in an illness role, "one of the expectations is that you're supposed to want to get better. And you're supposed to be doing everything in your power to move toward that." A person begins dying when "their primary responsibility is to prepare for the end of life."

"I’ve changed my priorities, certainly," says Hollinsworth, who has made her cremation and pension arrangements. She has decided where she will die, and, to the best of her abilities, how she will die.

Transition to dying

The transition to dying — and the transition of priorities that goes along with it — can happen after a conversation with a physician, whose prognosis often gives the patient permission to start making preparations for the end of life.

This, of course, is only possible if a physician can make a prognosis.

Terminal illnesses, like cancer, progress in a predictable way, so they have a readable pattern or trajectory. Other trajectories — those associated with chronic illness, sudden death and frailty — are harder to interpret, manage and treat. Often, only those with terminal illnesses even know when they're dying and that affects end-of-life decisions.

Rose Hollinsworth knows she's in the dying process, so she's figured out that for her, palliative care is the right choice.

"Your perception of how life goes determines how you will see death," says Dr. JoQuim Madrenas, a professor of immunology at the University of Western Ontario. He says people who are ambitious and active often see death as a fight and seek aggressive treatments, even after physicians begin to lose hope. Those patients are less likely to accept that they’re dying.

On the other hand, he says, those who feel like they’ve fulfilled their life’s goals might be more resigned to die.

As for defining dying, Hollinsworth may have that figured out.

"Your soul leaves, and your loved ones are there to see you off," she says.

"And that’s dying."