Advance care planning for patients with chronic illnesses

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The advance directive movement officially began in 1990 following the landmark case of Nancy Cruzan in the United States. The lengthy court battle over her life-sustaining treatment fuelled advocacy for the use of advance directives. The thought was that widespread use of advance directives would prevent such lengthy battles over treatment.

The reality, however, is that advance directives are nowhere near the panacea people thought they would be. Twenty-five years later the use of advance directives remains quite low: only 10-15 per cent of the general population have completed such documents. And experience has revealed a host of problems with their implementation, one of which is that the documents are rarely accessible when they are needed most.

Additionally, the recent media attention over the Margot Bentley case in B.C. has caused many people to ask, “What’s the point?” Ms. Bentley actually had completed an advance directive, which her family tried to implement, but the courts have ruled that the nursing home where she resides is actually obligated to feed her – in direct contradiction to her previous wishes.

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While there are a host of problems with advance directives, those problems simply highlight the flaws with relying solely on documents. Advance care planning is about much more than written advance directives – in fact, one can engage in advance care planning without ever completing an advance directive document. Advance care planning is a process of reflection and dialogue about what is important to you and how you want health care decisions made for you when you can no longer make those decisions yourself. While the process of advance care planning can be awkward and uncomfortable for many people, there are several reasons why it is an important and worthwhile process – especially for patients with chronic illnesses.

One reason is that while most of us would prefer to die comfortably at home, odds are that few of us will actually get to die this way. Recent statistics suggest that 70% of Canadians will die in hospital, and 10-15 per cent of those will experience an admission to an intensive care unit during their last hospital visit. If this is not the kind of death you want, especially the ICU part of it, advance care planning can help you avoid it.

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Second, many people avoid advance care planning because they trust their loved ones to know their wishes and make the right decisions. The problem is, studies show your loved ones aren’t very good at predicting what you would want! A recent meta-analysis of these studies concluded an accuracy rate of about 68 per cent. That means for anyone trusting their loved ones to make the decision they would make, only two-thirds of them will get it right.

Third, and perhaps most importantly, the process of having to make end-of-life decisions on behalf of a loved one is an extremely stressful and emotionally difficult experience. A 2011 study of surrogate decision makers found many of them experienced symptoms such as anxiety and depression, symptoms which they carried with them long after the hospital experience ended. But one of the important findings of the study was that knowledge of the patient’s wishes was one of the factors that reduced the psychological and emotional impact on surrogate decision makers.

The most important part of the advance care planning process is the dialogue with your loved ones, especially those who will be making decisions on your behalf. The dialogue will help them understand what is important to you and will give them guidance if and when the time comes to make difficult decisions on your behalf. If you’re not going to do it for yourself, at least do it for them.

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