Thinking about end-of-life is not something any of us particularly wants to think about – but according to Judy Hunt, volunteer co-chair of the Calgary chapter of Dying with Dignity Canada, "it's always too soon until it is too late."
"We may have the best of intentions to get our care plans and personal directives in place, but invariably they end up at the bottom of our to-do piles," she said, noting many of us have the tendency to procrastinate having awkward and sensitive discussions with our loved ones, or even ourselves, about dying and our own end-of-life wishes.
"We plan our everyday lives, but avoid planning our end-of-life and eventual death. Talking about death, and particularly our own, is difficult in our society."
According to Hunt, recent statistics show that only 20 per cent will die in a palliative phase – meaning a normal, un-medically eventful death. For the elderly, she added, at the time of death, 70 per cent are not competent and 30 per cent need some assistance in planning.
"If we live a long life, we can expect to die of two diseases at end of life, and also to have several years of being vulnerable and frail," she said. "Most people will die in hospital or ICU, even if they have said beforehand that they want to die at home."
Declining health over an extended period results in an increased likelihood that decisions will need to be made, and puts greater emphasis on what a person considers quality of life to be. According to Hunt, medicine has reached a point "whereby we can prolong life at the expense of quality of life."
"Over the past 50 years, medical research has done much to extend our living by curing or intervening illnesses, which before the mid-1960s were terminal," she said. "It also has prolonged our dying."
Still, Hunt said, research shows that 70 per cent of spouses and partners may not know each other’s wishes. Fewer than 20 per cent of Canadians have planned for unexpected health events, such as strokes, accidents or coma, indicating what their wishes for desired medical treatment would be. Additionally, she added, it's important to consider our older and declining years and the possibility of dementia.
"None of us can predict what will happen from one day to the next," she said. "It takes only a second for our lives to change – to fall and lose consciousness or become incompetent and be unable to communicate what we want or what we value. Therefore, discussions need to take place."
And these discussions need to include our family members. While most of us often say that the quality of life is more important than quantity of life, she said decisions made by loved ones often do not reflect this because they are unaware of our wishes or because they are making decisions based on their own emotions.
"It’s like buying car insurance," Hunt said. "The insurance doesn’t make it more likely we’ll get in an accident; it just makes us better prepared if we do. Talking about death doesn’t make it more likely that we’ll die; it just makes us better prepared when we do. We may never get in an accident, but we will most definitely die."
Advance care planning is a process whereby capable adults document a healthcare plan while still healthy, in preparation for a time when they may not be able to speak for themselves or make their own decisions. This plan involves thinking about and documenting ones wishes and values related to personal care – including medical health care – and drafting a legal directive to appoint someone, known as an agent, to make personal and health-care decisions in the event one can't make their own.
"This plan comes into effect only if the individual is in a situation where they are unable to make their own health-care decisions or communicate them," Hunt said. "These situations could be temporary or permanent, at the end of life or not. A personal directive will help those responsible for your care decide on your care and treatment, and help your family understand the decisions you’ve made."
Advance care planning kits can be downloaded from Dying with Dignity Canada, she added, with Alberta-specific plans available. Alberta Health Services provides information on this topic on its website, as well.
An advance care planning workshop will be held at the Kerby Centre in Calgary, April 18th from 1:30 to 4 p.m. Please RSVP your attendance at [email protected] or 1-800-495-6156. While there is no charge for this event, Hunt said a donation is appreciated to help cover the expenses.
