Being kept alive by default

Deciding whether to end patient care for a loved one is fraught with frustration

The sign in my high school library reads: Not to Decide is to Decide.

It’s a much-needed reminder for our health-care system, particularly in deciding when a patient can no longer benefit from care or, to put it bluntly, when it’s time to pull the plug. As provincial health-care systems lack effective ways to reach such decisions, patients across the country are kept alive by default.

Thousands of comatose and minimally conscious patients are kept alive in intensive care units across our country. I’ll ignore the financials behind keeping them on respirators in ICUs, because some decisions should not be based on dollars. The other costs are steeper: the backlog of untreated patients waiting for hospital beds taken by patients who won’t recover, the strain on doctors, nurses and healthcare staff who know their care is futile, the psychiatric symptoms and complicated grief of family members, and the unknowable pain and suffering of the patients themselves.

This is, of course, a modern problem. We used to fall acutely ill, then die or recover. But life-saving — or at least life-prolonging — technology now keeps individuals alive for months, years or even decades, unable to move, feel, touch, taste or communicate. These patients are often kept on machines at the insistence of family members or others making decisions on their behalf.

In Canada, we don’t know how big the problem is. Physicians in the U.S. believe 20 per cent of patients admitted to hospital ICUs are beyond the reach of care, with such poor prognosis for recovery that further treatment or life support is medically futile.

Canadian intensive care units may have an even higher percentage of these patients. And each such patient requires many more days in hospital than the average, often remaining in ICUs for months or even years.

Decisions about whether to prolong patient care are difficult. An illness or accident may strike without warning, spouses and family members are desperate for a loved one to recover, and sometimes that desperation colours their views of the quality of the patient’s life and the likelihood of improvement. They must explicitly agree to stop treatment, so many surrogates are overwhelmed with guilt by the idea that their consent will lead to a loved one’s death, even when they know the situation is hopeless.

This is why, even with the best communication, doctors and surrogate decision-makers sometimes just can’t come to a shared plan.

Those of us with no medical background tend to see deterioration in comatose or minimally responsive patients as temporary or reversible, while studies have shown otherwise. Laypeople tend to view stability as positive — the patient is not getting worse. But in the ICU, a patient who is not getting better now is unlikely to get better later. Life support can temporarily improve patients’ vital signs. Too often, substitute decision-makers hold on to those improvements while overlooking other signs of deterioration.

To deal with just these situations, Ontario created its Consent and Capacity Board. The board was meant as a neutral, objective, efficient body that would hear out doctors and substitute decision-makers, then judge whether care should continue or stop.

Unfortunately, the Consent and Capacity Board, which sounds so very good in principle, falls far short in practice.

Doctors who have sought rulings, though, say the process is time consuming, adversarial, procedurally focused, lacks expertise in the complex medical issues under discussion and places little emphasis on the patient’s best interests or prior wishes. Resolutions can take months and are subject to appeal.

Since medical teams are obliged to continue treatment during the process, a decision to go to the Consent and Capacity Board means indefinite life support — precisely the outcome the medical team was hoping to avoid.

For doctors, and the patients awaiting their turn for medical care, the process is deeply unsatisfactory.

Deciding to stop treatment in medically futile cases is tricky. But when we fail to decide, or abdicate the decision to a flawed mechanism, we have effectively decided to provide unending care, no matter of its futility. In our abdication, we fail our patients, their families and our health-care providers, as well as those with better prospects of recovery who will die waiting for care.