The cluster of chairs positioned near Desmond Watson’s hospital bed is a symbol of defiance to all who enter here. With their legs tied together and seats facing, the chairs are arranged into a makeshift cot from which his wife, Maria, has a constant vantage point.
For more than 1,000 nights, she has forgone the comforts of home to rest her hunched, 87-year-old body on whatever surface is available near Desmond — cushions, a couch, and now a bed of chairs where she sleeps propped up each night, her head leaning back against the wall.
All the while, her dying husband of 71 years has remained in the fetal position, largely silent, each breath pushed into his lungs through tubes, his mind oblivious to the mounting human drama unfolding around him.
Maria’s protective vigil isn’t merely a buffer against the dementia and disease that have devastated Desmond’s 89-year-old mind and body. It’s also a defence against medical staff at Oakville-Trafalgar Memorial Hospital, who she fears are intent to let him die.
“I’m scared to leave him,” she says. “From the minute he arrived here, they’ve wanted to kill him. I refuse. But they keep on pressuring me to let him go. So I keep one eye open every minute.”
In a written statement, hospital officials dispute the allegation.
“The health-care team has always endeavoured to provide care in accordance with the understood values, wants and wishes of the patient,” it says. “Mrs. Watson is vigilant in monitoring her husband’s condition and the care provided to him. However, the care provided by the physicians and hospital does not depend on her vigilance.”
Physicians who pass Maria’s improvised bed each day and tend to Desmond’s ailments see a man suffering at an “end state of life,” say documents obtained by the Star.
Last year, before a provincial mediation body, those doctors challenged Maria’s demands for heroic, life-sustaining care, arguing that aggressive treatments such as ventilation, oxygen tubes and emergency cardiopulmonary resuscitation were no longer justified.
“(He shows) no indication of cognition or understanding,” says a July assessment of his condition. “(He) . . . is unable to communicate or show emotion or response . . . There is no realistic opportunity for improvement.”
In July, hospital officials said they would arrange an interview with Desmond’s medical team for this story if presented with a release form signed by Maria granting them permission to speak.
Maria signed that release.
But two months later, hospital officials said no member of the medical team would agree to be interviewed.
When our values and beliefs as critically ill patients come into conflict with the medical judgment of doctors, who decides whether we live or die? We examine this question this still unanswered question in an ongoing Atkinson series. Click here to read the stories.
About 240,000Canadians die each year.
Three-quarters of those deaths take place in hospitals or other health-care facilities, where medical advancements have created unprecedented possibilities for prolonging life.
It’s a phenomenon that has changed how we die.
Where we once submitted to the rigid inevitability of medical prognoses, we now weigh options, seek experimental alternatives and invest in the promise of life-sustaining drugs and machines.
“Death, for the first time in history, is a negotiated event,” says Kerry Bowman, a University of Toronto bioethicist and leading Canadian thinker on end-of-life issues.
“There’s nothing in our psychology, our religious practices or within our culture that helps us. We have no goalposts. We’re in new territory and on our own and we’re trying to figure out how to do it.”
End-of-life conflicts often turn on a fundamental question that we have yet to clearly answer in Canada: when the values, beliefs and previously expressed wishes of critically ill patients come into conflict with the medical judgment of doctors, who decides if a life is worth living?
A lack of legal and ethical clarity around end-of-life protocols has created one of the most confusing and pressing health-care issues of the moment and the decades to come.
Nothing in modern medicine challenges us more than the pitting medical judgment against personal autonomy and beliefs, calculating how long we should wait to see if life can be snatched from death, and determining who should pay for life-giving care that goes on for months or years without improvement.
The early distant warning of Canada’s “silver tsunami” is already testing the country’s strained hospital systems and creating intractable disputes between doctors and family members who stand in as surrogate voices for their loved ones.
Desmond Watson lies between two polarized positions that claim an identical purpose: to honour his best interests.
On one side, his physicians, uncomfortable sustaining the lives of patients they believe are suffering with no prospect of long-term improvement, see heroic measures as medically indefensible.
On the other are families like the Watsons who hold a strong belief in the sanctity of life.
Where there is life, there is hope, they believe.
Choosing it, even in the face of physical suffering or pain, is an uncompromised conviction. And when death finally comes, it must be a death that respects their beliefs.
“What they want to do to him, I can’t let it happen,” says Maria. “I’ll go so far as to say, ‘Over my dead body.’ If he has to die, let it be natural. I can’t agree to what they want to do.”
In Canada, our understanding on how to handle such life-and-death disagreements is in its infancy.
There are no national standards for end-of-life care, professional medical bodies have little to say on the matter, and protocols vary from province to province, even hospital to hospital.
The most adversarial of these conflicts are moving from hospitals to courthouses and hearing rooms with little added clarity.
Even as judges and provincial panels adjudicate life-and-death controversies, there remains little practical guidance or peace of mind for doctors or their patients.
We don’t know what we’re doing.
And the human cost is massive.
The burden of end-of-life uncertainty falls upon confounded medical professionals trying to balance already strained resources with ethical conduct.
Perhaps most acutely, it falls upon Canadians who want a chance at beating death’s odds.
Conflict between Desmond’s family and physicians began the very first night he was brought to Oakville-Trafalgar in January 2010, Maria says.
Already suffering from advanced dementia, he was admitted with pneumonia.
“One doctor came to me and said, ‘Let him die,’ ” Maria recalls of her first encounter with medical staff at the hospital. “I was in shock. From the time he arrived, that’s what they set out to do. What’s a hospital for? To save people.”
In their written statement, hospital officials deny the allegation.
“The record of care clearly indicates the medical directives and treatments provided prolonged life. The fact that Mr. Watson is still alive demonstrates that all involved in his care — Mrs. Watson, his daughters and the health-care team — have successfully prolonged his life.”
Desmond’s pneumonia subsided. He breathes independently some of the time. But other ailments have arisen.
All agree his dementia is unyielding and progressive. It has robbed Desmond of mental capacity for good.
And so, as his substitute decision-maker, Maria has become the translator for Desmond’s hidden wishes.
No one knows him better.
Together, Maria and Desmond have shared a love story that reaches back beyond seven decades of marriage.
They met in Trinidad when she was 10 and married seven years later, eventually raising five children in Canada.
There were challenges.
She is black. He is white.
And business opportunities for the World War II veteran were limited on the small island.
They arrived in Canada in 1963 as hopeful immigrants and settled in the Toronto area, where Desmond worked as an office clerk.
Through it all, they lived and instilled in their children the Catholic values that have defined their lives — loyalty, faith, forbearance, a belief that God’s will supersedes their own.
Each night before bed, Desmond would sink to his knees and pray, sometimes falling asleep before he finished. The moment he awoke each morning, he’d again seek guidance and strength from above.
Meat never touched their dinner table on Fridays.
And Sunday mornings were sacrosanct. If the snow fell too deep to drive to church, he’d walk through the storm, Maria says.
Over the years, they spoke about death and illness. He didn’t believe in ending a life or cutting off life support, she says. For him, life is sacred, not ours to dispose of when challenges arise.
Suffering, he believed, was woven into the experience of living. Through it, we are ennobled. And, in turn, we inspire and strengthen those around us who bear witness. For him, the misery of tubes, medications and physical afflictions was preferable to the abomination of withdrawing the means of life.
Each morning,Maria wakes next to her silent, motionless husband.
The sterility of hospital whiteness is adorned only with a small statue of the Virgin Mary and a few family photos.
She shuffles through the hallways of the fourth-floor wing each day like an interloping spirit, her blue rubber shoes dragging across shiny linoleum, her gaze focused straight ahead.
There’s no eye contact from either side of the nurses’ station. She is friendly with many of the staff here. But Maria also understands that her choices for Desmond and her constant presence are a source of discomfort for some on his medical team.
It has no bearing on her vigil.
Her face is etched with the lines that come from the challenges of divining the minute-by-minute wishes of a man who lies in unbroken stillness.
She would trade her life for his, she says with a frankness that reaches beyond rhetoric.
“Whenever he can’t breathe, I tell him, ‘I’ll breathe for you.’”
You get the sense that, if he could talk, he’d say the same about her.
A tattoo on his right arm reads “Maria.”
“He told me that if I ever left him, he’d turn it into ‘Ave Maria,’ ” she says with a wide grin. “But he never had to do that. I’ve stayed with him. Always.”
Bones in her hands bulge beneath translucent skin as they stroke his wisps of white hair.
She touches is face gently and whispers in his ear, “How are you today Desmond? I love you. I love you.”
No response will come. But he’s in there, she believes.
“He knows me. He’ll squeeze his hands or look at me when I say, ‘Hey Dad, do you want me to pray the rosary with you?’ He’s with me.”
Doctors disagree, according to documents.
In March of last year, Desmond’s physicians followed the Ontario protocol for resolving end-of-life disputes that have reached an impasse: they triggered a hearing before the province’s Consent and Capacity Board (CCB), a tribunal whose role is to hear disputes over end-of-life cases and issues orders, challenging Maria’s demands for aggressive care.
“At times the directions from (Maria) had not been clear or consistent,” the hospital’s statement to the Star reads. “Utilizing the only means available to seek clarity, given the breakdown in trust between the health-care team and this family, the hospital worked through the Consent and Capacity Board.”
In testimony before the panel, Maria gave an impassioned plea for her husband’s life.
Inducing death or removing treatment would be tantamount to “mercy killing” for Desmond, she told them.
In their written judgment, the panel called her testimony “sincere” and “steadfast . . .
“Her description of (Desmond’s) religious beliefs were supported by specific examples of his devotion to the church and strengthened by spontaneous examples that rang true.
“The panel agreed with (Maria) that (Desmond’s) personal religious beliefs and values, particularly those that specifically addressed end-of-life treatment, would have caused him to seek out aggressive treatment, regardless of his current circumstance and the medical reality. For (Desmond), not (to) continue with aggressive treatment to maintain life was a sin.”
That settled the matter until July, when doctors initiated a second CCB pre-hearing to again seek guidance on Desmond’s care amid re-escalating conflict with the family.
A hospital letter to Maria prior to the hearing claimed delivering the constant care ordered by the board “has become extremely challenging in light of your constant interference with the care plan.
“There is concern Mr. Watson is suffering as a result of your decisions and that your decisions prevent the team from providing health care that meets accepted standards.”
Maria’s alleged interference included “firing many” of Desmond’s physicians, refusing to agree to antibiotics, having him turned in bed as recommended by a specialist, and refusing to consent to a do-not-resuscitate order “despite the opinion of the treatment team that a full resuscitation will cause significant injury to Mr. Watson.”
Maria’s response to the allegations is categorical: “He would have died long ago if I hadn’t watched them closely and brought in other doctors from outside to assess Desmond and help us. They don’t want him alive here. They’ve always wanted him dead.”
The second hearing ended in a fragile truce — an agreement on the details of Desmond’s treatment plan and a commitment to ease tensions.
Amid that conflict, the elephant-in-the-room question — one the CCB is not mandated to address — is the expense of caring for the dying. Based on average daily bed costs at Oakville-Trafalgar, Desmond’s almost three years of care have cost more than $1.1 million.
The volatile dynamics at play between the Watson family and medical team have tended to reach a crescendo when Desmond’s treatment plan is under discussion between doctors and family.
That’s what happened in March of last year when Maria and her daughter Teola met with one of Desmond’s doctors.
He recommended making Desmond comfortable by giving him morphine at gradually increasing dosages until he eventually died, the two women allege.
“My mother told him off,” says Teola. “I did too. We weren’t about to let that happen. We tried to get him off of Dad’s care and change doctors. We’re very Catholic and I don’t think anybody has a right until God decides to take the person. If he’s still fighting to live, the doctors shouldn’t be the ones to make that decision.”
Hospital officials denied the allegations in writing, saying all efforts have been made to prolong Desmond’s life.
“It is hoped that this has been achieved while keeping Mr. Watson as comfortable as possible, but this is difficult to measure as Mr. Watson continues to be non-communicative.”
Jocelyn Downie, a leading health law expert in Canada and author of Dying Justice, says tortured communications between medical professionals and families in end-of-life cases illustrate deep flaws in our current model of care.
“It shows that we have such poor tools at our disposal for helping people to die well. People can’t even talk openly about what they’re doing because they’re scared of prosecution, they don’t understand the legal status of this bizarre little set of practices, they really, really want to help their patients and prevent suffering but feel they can’t give euthanasia or assisted suicide, so let’s do everything that it seems we’re allowed to do.”
Even determining what’s allowed is a fraught process.
Administering levels of morphine that effectively hasten death, for example, has little moral distinction from assisted suicide, she says.
“I think, if anything, it’s worse because if that’s your goal, that’s what you’re trying to achieve, you’re just doing it slowly enough that you won’t get caught, that it won’t be seen to somehow violate the law.”
End-of-life disagreements are now considered to be the main ethical challenge in Canadian health care, says Dr. Karen Choong, a McMaster University pediatric intensive-care specialist and co-author of a recent study on the growing conflict in hospital ICUs.
“Our decision-making model in Canada, as opposed to other countries, involves more autonomy in decision-making for patients and families,” she says. “In the past, physicians’ opinions were accepted. But as the community becomes more educated and has access to more resources with respect to health care, it’s natural that the population will question decision-making.”
Despite the ensuing conflict, tough questions aimed at medical professionals are probably a positive development, she says.
“I think it’s important to be questioned. I think that reflects an evolution that physicians should have accountability and a responsibility to educate their patients.”
A U.S. study involving 102 intensive-care patients found a level of conflict that surprised even researchers: about half the cases involved disputes between families and medical staff.
Those results find anecdotal support from Karen Calverley, an intensive-care nurse at Toronto General Hospital with more than two decades’ experience caring for dying patients whose families have come into conflict with doctors.
“It’s the crux of the struggle we have — who makes that final decision,” she says. “I don’t know whose it should be. I struggle with that myself. It’s such a grey area.”
Ask her what nurses talk about among themselves in the lunchroom and greater insight emerges.
Most nurses — the closest witnesses to our emotional turmoil, sleep deprivation and shock at a loved one’s negative prognosis — believe families are often ill-equipped to make the most reasoned decision, she says.
“Most of the time, it’s the family that can’t let go for selfish reasons,” she says. “(Nurses) almost want the doctors to take that burden away from them and make the decision. That’s something we always wish.”
The problem is, doctors appear as confused as anyone.
Interviews with more than a dozen physicians in Ontario who deal with end-of-life cases reveal a wide discrepancy of views on weighing medical judgment against patient values and beliefs.
Dr. Neil Lazar, director of the medical-surgical intensive care unit at Toronto General, believes medical professionals must honour the wishes and beliefs of patients in end-of-life disagreements.
Physicians in these difficult cases often “put on their managers’ hats too quickly,” he says.
Or they impose their own beliefs on patients and substitute decision-makers.
“Caregivers at the bedside look at the situation so differently than families. They say, ‘I can never imagine myself or family in that bed.’”
While that may be so, it isn’t their life or death to decide, he says.
“It’s arrogance to suggest you know better.”
One of Canada’s leading thinkers on end-of-life questions, University of Toronto philosopher Wayne Sumner, throws up metaphorical hands when asked how best to resolve difficult life-and-death disputes such as the one surrounding Desmond Watson.
“It’s extremely troublesome and messy and I don’t know what the answer is,” says the author of Assisted Death. “You don’t want to put decision-making power entirely in the hands of family and you don’t want to put it entirely in the hands of medical teams either. I can’t imagine how you can lay down any general, substantive rules.”
On that point, there is no dispute.
But it’s a consensus that provides little clarity.
Where doctors see medical futility as justification for withdrawing heroic measures, Maria sees a man of strength and conviction who contributed to Canada throughout his life and now deserves to be given the death he wished for.
“I know he’s suffering,” says Maria. “But he’s a fighter and he’s lived two and a half years longer than they said he would.”
The ethical and legal end-of-life debate in Canada won’t be settled nearly in time to ease the tensions between Desmond Watson’s family and his physicians.
Three years after arriving at Oakville-Trafalgar, Desmond remains at the centre between two poles. All efforts to heal the rift and reach a consensus on his best interests have failed dramatically.
The only possible relief now will be unsatisfying, poignant and final: Desmond’s death.
“Conflict at end of life is unbelievably corrosive and destructive,” says U of T bioethicist Bowman. “When it’s over, not only has the person died, but they died after a war.”
Maria’s voice quivers at the prospects.
“I pray to the Virgin and ask her to take Desmond into her arms. But these hands and these lips can’t do it. I can’t say ‘yes’ to putting my husband to sleep. That is for God to do.”
Robert Cribb is a 2012 Atkinson research fellow who has spent the past four months examining how Canadians face the end of life.
Published in the Toronto Star on Monday October 22, 2012.