“Imagine you’re in a hospital and you can’t speak….soon you won’t be able to swallow or breathe. Who will speak for you?”
These questions are posed at the beginning of a video on the website for the National Healthcare Decisions Day, which is today, April 16th. The day exists to “to inspire, educate & empower the public & providers about the importance of advance care planning.” Advanced healthcare planning means putting your wishes about your end-of-life healthcare into writing. By documenting your choices, you ensure that your preferences will be followed if you are ever unable to make your own healthcare decisions.
While polling indicates that most Americans are aware that they can document what they would want if they were unable to make their own healthcare decisions, this knowledge doesn’t always translate into action. Lisa Krieger, a journalist for the San Jose Mercury News, has written a series of articles this year, “The Cost of Dying,” inspired by her father’s end-of-life experience. In a recent article, she cites research from the California Healthcare Foundation that while 82% of Californians say it’s important to have end-of-life wishes in writing, only 23% have actually done so.
Having a conversation with a parent, spouse, sibling, or loved one about their preferences for end-of-life care can be difficult. However, the alternatives can be far worse. Randall Krakauer, the head of Aetna’s Medicare medical management, explained in a Wall Street Journal article that when choices aren’t known, “by default we end up using very aggressive curative therapy which in most cases is not only inappropriate, but would not be the patient’s choice.”
Family members who are thrust into the decision-making role without knowing their loved one’s preferences are in a difficult position and often don’t have a lot of time to make decisions.
“Am I agreeing to this treatment because I want them to have it, or am I doing it because I think they want to have it?” “My brother thinks that Dad would want further treatment, but my sister thought he said once that he didn’t, and my other sister thinks we should stop treatment immediately.”
Even after decisions are made, feelings of guilt, anger, regret, and “Did I make the right decision?” are common if a loved one’s wishes weren’t known.
There are several types of advanced healthcare planning documents that can be used and there is an excellent list of the forms and guides to complete them on the website for National Healthcare Decisions Day. For example, one Advanced Directive form, called “Five Wishes,” meets the legal requirements for an advanced directive in 42 of the 50 states.
Another type of advanced directive is the Physician Orders for Life Sustaining Treatment, (Polst), which is an official medical order and must be completed with a healthcare professional. On the Polst website, it states: “A POLST Paradigm form is most appropriate for seriously ill persons with life-limiting, also called terminal, illnesses or advanced frailty characterized by significant weakness and extreme difficulty with personal care activities.” The Polst is not designed to replace an advanced directive, instead, it can be used in conjunction with an advanced directive. It is not available in all states, to see if your state participates, visit the Polst website.
While completing the paperwork is important, it’s also important to sit down and discuss the completed form with the person who will be your surrogate decision-maker. By reviewing the completed form with them, you can ensure that there is no confusion about your written preferences. It’s important to make sure they have a copy of the completed form in case they need to refer back to it. Additionally, even with a completed advanced directive, there can still be gray areas in decision-making around end-of-life care. By having a conversation about your preferences, you can help alleviate some of the difficulty for your surrogate if they are forced to navigate a decision that isn’t precisely addressed in your advanced directive.
Filling out the form and having the conversation isn’t easy, but it is is an invaluable gift to your loved ones. A completed advanced directive gives them the confidence that if they are put in a decision-making role, they are making decisions based on your preferences.
Family Caregiver Alliance has several resources that can guide you in writing your advanced directive and that can be helpful if you are caring for a loved one.
Family Caregiver Alliance Fact Sheets:
End-of-Life Choices: CPR & DNR
End-of-Life Choices: Feeding Tubes and Ventilators
End-of-Life Choices: Holding on and Letting Go