Defining the end of life

The dying process; the social and psychological aspects of dying, can mean different things.

Moving from getting well to preparing for death

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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. 
Rose Hollinsworth in London, Ont., says dying is when your soul leaves you. (Heather Young/Western)

"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. 

Palliative Performance Scale

Physicians evaluate their terminal patients using the Palliative Performance Scale. This scale assigns a number to each patient, which represents their mobility, consciousness and ability to eat.

© Victoria Hospice Society, 2006

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.

Types of dying

A 1991 study (Lindley-Davis) outlines four types of dying:

  • 1. Sociological death: Patient withdraws and separates from others.
  • 2. Psychic death: The individual accepts death and regresses into himself. 
  • 3. Biological death: No consciousness.
  • 4. Physiological death: Vital organs no longer operate.

However, the study also says that variations in the process occur, and many physicians seem to have their own definitions for the dying process.

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.

Life trajectories

Hollinsworth has a terminal life trajectory, which has a predictable course. Other trajectories don't lend themselves  to determining when a patient should consider palliative care. For example, predicting the end for a patient suffering from long-term chronic illness such as conjestive heart failure is very difficult.

"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."