David McMaster was dying. What shocked his family was the way it happened.
“We were robbed of the chance to say a proper goodbye,” says his daughter Susan.
Mr. McMaster, 80, had been in and out of Sunnybrook Health Sciences Centre in 2010 with a series of complex circulatory and kidney problems. Eventually he also contracted C difficile, a hospital based-infection. After a week in the Intensive Care Unit on a breathing machine, doctors decided nothing more could be done; it was time to move him to “comfort care.”
But the only available bed was on a general medicine ward with two other patients. So instead of a peaceful atmosphere, Mr. McMaster ended up in pain, gasping for breath in a tiny room noisy with boisterous visitors and clanging cell phones.
Even worse, Mr. McMaster’s daughter couldn’t rouse a nurse or a doctor in the middle of the night – so she watched her father struggling “for a gruelling” 90 minutes before he was given appropriate sedation. He finally fell into a deep slumber, but Susan kept guard for the rest of the night and remained with her father until he died later that afternoon.
“I wouldn’t want this to happen to my mortal enemy,” she says.
Most people envisage soft music, gentle lights, and family and friends swaddling them in love as they are ushered from this world into whatever lies beyond, but the ghastly reality that the McMaster family experienced is far too common. Instead of stewing over her father’s death, though, Susan McMaster decided to be proactive and present her case to the hospital.
Her complaints challenged Sunnybrook to rethink end of life care. They also speak to a much bigger challenge – to redefine what a “good death” looks like, both in and out of hospital, in time to support a rapidly aging population. And to reconsider our own responsibility for planning life’s last big milestone.
Perhaps the other end of the life cycle offers us some guidance.
Birth used to happen at home. Then modern medicine intervened and what was once a natural event became institutionalized. In the process maternal and infant mortality dropped, which was a good thing. But women wanted both safer childbirth and more say in their experiences, so they agitated for change.
Nowadays, women have a variety of choices about how they give birth. Some routinely go into labour at home, supported by midwives, and give birth in their own beds. Others start at home but head to a hospital when contractions are acute, deliver the baby, and leave a few hours later. Still others plan caesareans, or hospital birth with enough drugs not to feel any pain during labour and delivery.
Death, too, started at home. But now 65 per cent of Canadian deaths every year occur in hospitals – even though how we want to die is as varied as patients themselves.
Some of us will fight disease to the end with chemotherapy drugs coursing through our their veins. Others will opt for terminal palliative sedation – an induced, coma-like state to ease anxiety and ragged breathing before death. And a great many of us, especially seniors who are aging in their own homes, want to die there, or in a hospice.
Unlike pregnant women, though, dying patients don’t have a due date.
Doctors are notoriously bad at predicting when their patients are going to die. Only 20 per cent of survival estimates were accurate in a British Medical Journal study of nearly 500 patients admitted to hospice in 1996.
The late American humourist Art Buchwald so befuddled the mortality prognosticators that he wrote a bestselling book, Too Soon to Say Goodbye, about the time he spent not dying in a Washington area hospice. After being shown the hospice door, he finally succumbed to kidney failure several months later at his son’s home.
Patients who don’t die on cue can bedevil hospital administrators managing tight budgets and juggling beds in chronically stretched units. Donald Parr, a gentle, amiable man in his mid-80s, was admitted to Sunnybrook’s 32-bed palliative care unit last October. Typically, patients die within 18 days of admission, but Mr. Parr, like Mr. Buchwald, defied the odds. The hospital wanted to send him home or transfer him to a less expensive bed in another facility.