Katie* died young of breast cancer. Her father Ron* is angry about her end-of-life care, and wants things to change.
“Katie's last few days were anything but peaceful,” Ron explains. “She was poked and prodded with needles, and taken away from away from home for unnecessary medical tests. This was a terrible waste of precious time, and an unforgivable burden for Katie and her family.”
Konrad Fassbender, PhD, Scientific Director of the Covenant Health Palliative Institute, says that Katie’s experience is not unique and happens too often. His research points out that "90 per cent of our population do not have adequate conversations with their healthcare providers and families about their preferences for treatment if they should become unable to speak for themselves."
"Most people don’t realize that we have a healthcare system that is conditioned to extend life at any cost," explains Dr. Fassbender. "Katie’s story shows us what can happen when no one stops to ask what quality of life a patient is willing to trade off for treatments that could extend their life.”
Dr. Fassbender says that having an advance care plan is an important part of the solution to this issue. “This is the term for how we think about, talk about and document wishes for health care if you become incapable of consenting to or refusing treatment or other care,” he says. “It also identifies someone to speak for you if you are not able to speak for yourself. The plan ensures they understand your hopes and fears for your health so your wishes are respected.
"Without an advance care plan in place," he explains, "it is assumed that any tests, diagnostic procedures, surgeries and medicines are all good for you, even if they lower your quality of life. In fact, the health system is compelled to provide life-extending care unless you opt out.”
Despite acceptance that advance care plans are the answer, they are not commonplace. Dr. Fassbender is working with the Advance Care Planning Collaborative Research & Innovation Opportunities Program (ACP CRIO) to find out why. One of the major barriers identified thus far is cultural. “We are a death-defying society,” he notes. “Doctors and patients alike are reluctant to talk about death. So, these conversations are often delayed until it is too late. We need to find ways to discuss death early and more openly.”
“Konrad is right. Death and dying is a reality we will all face, and that's why it's important that we don't shy away from discussing our needs, hopes and values with our family and caregivers so they can better advocate for our care decisions later," asserts Dr. Gordon Self, Vice President of Mission, Ethics and Spirituality with Covenant Health. "The family dinner table is an ideal place to begin having such meaningful conversations, when we can reflect together with trusted loves on what really matters before suddenly facing a health crisis when it may be even more difficult, or impossible to dialogue."
Is death simply too hard to talk about? 'This myth needs busting, and people would be surprised at how possible such conversations are, much like good discussion around the dinner table as Gordon says,” adds Dr. Fassbender. In fact, Dr. Fassbender's team recently pilot tested a curriculum for junior high students that encouraged them to talk openly about death. “The majority of children we studied had no difficulty in talking about death,” he adds.
The cost of not talking about death, or having advance care plans in place, is enormous, says Dr. Fassbender. “Up to 25 per cent of healthcare resources are spent providing care to those who are dying. This includes care in costly emergency room and intensive care environments,” he adds. “Not all this care is effective or even wanted.”
*Names were changed to respect patient privacy
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