Imagine you’re in hospital and unable to speak. Soon, you won’t be able to swallow or breathe. Who will be your voice? What will guide the decisions that person makes on your behalf?
Many Canadians don’t know the answers to these questions because they’d prefer to pretend that disability and death only happen to other people. By failing to plan for worst, Canadians are denying themselves the best at end-of-life.
Seventy per cent of Canadians, according to the Canadian Hospice and Palliative Care Association, have yet to prepare a living will or advance directive – a document that names a substitute decision maker and provides directions on how to give or refuse consent for treatment on a person’s behalf.
We all want to believe that we’ll die peacefully at our 100th birthday parties, sometime after the cake and before the clean up.
But the reality is that while 90 per cent of Canadians say they’d prefer to die at home, some three-quarters breathe their last in hospitals and other institutions.
There’s no excuse for this disconnect. Eighty per cent of Canadians agree people should start planning for the end of their lives when they’re healthy, according to the CHPCA, and it’s not as if we don’t know the end is coming.
Thanks to modern medicine, we’re one of the few generations that have the luxury of being able to plan for death beyond picking out a tombstone.
Ninety per cent of us will die of protracted illness, according to a recent study, and chronic diseases such as cancer and Alzheimer’s will account for about 70 per cent of all deaths. In such cases, the trajectory to death, if not the moment itself, is known.
Yet, Canadians give more thought to what comes after death – keep or donate the organs, bury or burn the body, stash or scatter the ashes – than they do to the days, months or years of deterioration and tough decisions that come before.
Without a plan, your default destination is the hospital, and treatment will come down to whatever compromise your doctors and family can live with.
Fewer than 44 per cent of Canadians have discussed end-of-life care with their families, and only nine per cent have done so with a physician.
As the legal battles over Terri Schiavo in the 1990s revealed, negotiating that compromise without a clear statement of the patient’s wishes can get ugly.
Planning for death can save a lot of heartache for surprisingly little headache.
Most provinces have forms and other resources available to guide you through the process of crafting a living will.
As long as you designate a substitute decision maker, you don’t even have to write out your specific wishes for care, although that helps.
Just talking with family about who will call the shots and the principles by which health decisions should be made is enough to improve quality of death and reduce the stress experienced by loved ones in a crisis, the CHPCA states.
It’s probably not going to be a comfortable conversation – denial of death is a hardwired survival instinct. The unknown and the obliteration of self that death represents barely scratch the surface of our anxieties.
Why should we relinquish hope when there’s always another experimental treatment and a miracle cure could be just around the corner?
It’s a carrot some chase even to the point of freezing their remains at great expense.
Planning for death is also wrongly lumped into contentious debates over euthanasia and suicide – as if, by acknowledging our mortality we’re somehow complicit in it, or providing an excuse for caretakers to pull the plug.
But that makes the mistake of thinking advance care planning is about death when it’s really about ensuring Canadians get the most out of life to the very last breath.
It’s about knowing when to stop life-sustaining treatment and focus on life-enhancing care.
The absence of planning is associated with worse quality of life in the terminal phase of illness and increased dissatisfaction among family members in the months before and after a patient’s death.
Conversely, end-of-life conversations are associated with greater patient and family satisfaction, lower rates of admission to intensive care and less costly care in the terminal period.
Fears that living wills provide justification for callous caretakers to pull the plug also miss the reality that doctors are required by law to obtain consent to withdraw treatment.
A living will doesn’t stand in for consent, although physicians have an ethical obligation to honour patients’ wishes within legal limits.
And if we’re so afraid of letting go, why aren’t we seizing the opportunity to make our wishes known so they may last beyond our capacity to express them?
We won’t survive this life, but if we speak now, we can meet our ends in peace.