Friday is National Healthcare Decisions Day here in the U.S. The Guardian News in the U.K. recently ran an article about the struggles of a family trying to communicate their final wishes to their providers during a pandemic. On one hand, the article illustrates the thoughtfulness of Clanchy’s parents in outlining their healthcare directives. They were completed, changed, witnessed; the couple did everything correctly to have the plans in place, documented, witnessed and understood by their health care surrogate, their daughter.
On the other hand, the article also illustrates how even the best thought out and laid out plans are sometimes ill-received, poorly understood, lost, mishandled or ignored by health care providers or families. Throw in an overloaded system in the midst of a pandemic and things just get exponentially more complicated.
All of this means that advance directives are not a panacea, no end all or be all for our end of life wishes. The system is not perfect. Not just the public needs to be educated about what advanced care plans are and what they mean; health care providers, especially emergency and ICU providers need to be better taught what health directives mean and how to honor them. Having an advanced directive does not equate to a Do Not Resuscitate (DNR) order. A health directive does not mean you choose no type of life-saving procedures or treatments. It can mean you simply want to avoid procedures, treatment and care that only delays death, or you want absolutely every option explored and used to prolong your life.
As I stated before, this article is from the U.K., but the understanding of directives here in the U.S. is not much better. As far as the public, less than 40% of adults have made any sort of end of life plans. Of those, around 33% of people having chosen a health care surrogate, proxy, and only 29% have filled out the living will, health care directives, portion of advance directives. In healthcare, the TRIAD study (The Realistic Interpretation of Advance Directives) has found that our U.S. healthcare does not know how to handle living wills, and frequently living wills do get misinterpreted as Do Not Resuscitate orders as often as 80% of the time.
A large part of the reason for all of this is because as a society, we associate Advance Directives as end of life directives. In reality, advance directives outline what kind of care we want at any age (18 and older) if we encounter an unexpected or sudden illness, accident or incapacity. We need to fill out our forms as soon as we can, and we need to keep them updated as our circumstances change.
Some of us are old enough to remember the story of Terri Schiavo. She collapsed in 1990 at the age of 26. Her story was tragic for everyone involved. Her parents argued with her husband about removing her feeding tube after being in a persistent vegetative state for 8 years. Before her death in 2005, Florida’s state legislators, Governor, the U.S. Congress, the U.S. President and the U.S. Supreme court had become involved, for all intents and purposes, to mediate a family squabble about what Terri would have wanted. Ultimately, Terri lived with no brain activity for 15 years. Her and her family’s tragic story changed many people’s minds about end of life care, the right to die with dignity, and clearly demonstrates how important having your wishes written down and communicated can be.
Without thoughtfully considering what it is you value right now in your life, you will not know what sort of treatment is important to you. Clanchy’s parents performed their due diligence, and I hope that you will be inspired to follow their example. Perhaps this article might also inspire you to advocate additional training for our health care practitioners so that they can better understand what health care directives mean, how to understand them and honor them.
I’ll be sharing lots of resources for you this week leading up to a Live Video Friday to discuss and illustrate some of them in more detail. Ask me how I can help you today.