Advance Care Planning
70% of Canadians die in hospital, and for 10-15 % their last admission is to the Intensive Care Unit. This occurs despite the fact that most report that they would prefer to die at home, with comfort measures only.
In 2016, 4.2 % or fewer Torontonians over the age of 18, regardless of their health status, survived CPR (or Cardio-Pulmonary Resuscitation) attempts in the home, with survival being defined as being able to leave the hospital after the event. Research indicates that the public’s impression of the survival rate of CPR from watching TV and movies is about 70%. 4.2 vs 70%— that’s a big discrepancy.
Too many people die from their illness while desperately trying to find a cure or to “buy more time”. They miss the chance to spend quality time with their loved ones and plan their end-of-life with them, to leave a legacy, or even to discuss with them what Dr. Ira Byock, a prominent American Palliative Care physician considers “The 4 Things That Matter Most”. These are saying to the appropriate people “ I Forgive You, Will you Forgive Me?, Thank You and I Love You”. Most would add “Good-Bye” to that list.
These are a few of the reasons why after retiring from my family practice of over 30 years, I decided to offer counseling in Advance Care Planning and End-of-Life issues. I knew that family doctors rarely have the time or in a few cases, the inclination, to discuss what their patients would want in terms of medical intervention in the event that they could not make decisions for themselves. The patient also has to be confident that they have the right person to fill this role for them—ie their Substitute Decision Maker or Makers. Actually, I believe the most important thing I do is to help the person decide on their SDM and then bring these people together to sit down and discuss the patient’s values, wishes and beliefs. In Ontario, Advance Directives, that is, documents outlining a patient’s guidelines for future care, are not legal. What is legal is what the SDM says when the patient cannot.
I believe one of my main aims is to help the SDM understand and feel comfortable acting on the patient’s wishes—to help them to make the decisions that the patient would want—not what they would want for the patient, not what they would want for themselves in that situation, but what the patient would say if we could “wake them up" and explain the scenario.
Since I have many things I’d like to do in my retirement, I don’t think my part-time counseling practice will get the word out about the need to think about and prepare for our end-of-life sufficiently. Fortunately, I believe that many people, with the right tools and motivation, can do this work on their own. Excellent resources with workbooks specific to the province are available at www.advancecareplanning.ca and www.dyingwithdignity.ca. There’s even a workbook to help you get everything from your financial affairs, medical records, funeral plans, who you’d want to be called to in the event of your death, and much more that you can order for $20 from Amazon. It’s called, “I’m
Dead, Now What?”
(If you prefer a more subtle title, the same book is sold under the title, “Peaceful Endings”). I’ve been asked to do some public speaking about Advance Care Planning and I hope this will help me get the word out about its importance.
The response of those patients and their families who have chosen to do this work has been overwhelmingly positive. I’ve witnessed the strengthening of connections between patients and their loved ones who have accepted the role of Substitute Decision Maker. Many SDMs have thanked me for enabling them to learn things about the patient’s past that they otherwise would never have known.
In our death-phobic culture, contemplating death and dying can be a major challenge, one that many are unable to meet. But, I promise you that even the most basic Advance Care Plan, reviewed with a trusted SDM, documented for their benefit, and updated as needed will enable you to have your end-of-life wishes more likely to be known and acted upon. It will also reduce stress and depression among your loved ones, knowing that things went, as much as possible, according to your wishes.
Google provides countless very interesting and poignant quotes regarding death. The one that appealed to me because it got right to the point is by Franz Kafka. He said, ”The meaning of life is that it stops”. I would add—therefore, it’s best to make the most of every day and …to make plans.