Despite seventy percent of Americans preferring to die at home, nearly seventy percent die in a hospital, nursing home or long-term care facility. Eighty percent of patients with chronic diseases say they want to avoid hospitalization and intensive care when they are dying. And here’s the kicker, only 20-30 percent of Americans report having an advance directive such as a living will.
We have to do a better job of aligning what people say they want with what they get. That requires conversations between you and your healthcare providers; you and your family and friends. This is more than just filling out a piece of paper or assuming your family and friends know what you want or that your healthcare providers know what you want. It’s time to roll up your sleeves and get to work, learn all you can about the choices you have regarding any chronic health condition you live with and also other conditions that may happen unexpectedly. In addition to putting your decisions in writing, it is recommended that you talk about them with your family and friends and explain more about how you made these choices.
Even when patients have an advanced directive, physicians are often unaware of their patients’ preferences. One large scale study found that only 25 percent of physicians knew that their patients had advance directives on file. Furthermore, your primary care physician is not the doctor that will take care of you if you are admitted to the hospital and will likely not be involved in your case to guide the caregivers that are there.
This is why it is import to have conversations with your family and friends and name someone that knows what you want under different circumstances. It’s your responsibility. Especially if you are one of the seventy percent of people that want to die at home or if you are one of the eighty percent of people with a chronic condition that wants to avoid dying in the ICU or the hospital. No one will come knocking on your door to make sure you have everything ready to go for when the time comes. And when the time does come, we usually do not have the luxury of time to wait for lengthy discussions to make decisions.
For people in their 20s and 30s who don’t consider this as an important thing to think about right now, there are patients that are admitted to the ICU due to an unforeseen traumatic event such as accidents. Often times there have never been discussions about what they would want because they are young and healthy. If there are injuries that would leave a person with devastating neurological consequences or in a vegetative state, what would that person want? In these cases, usually it is parents or a young spouse that is left making decisions if there isn’t a power of attorney for healthcare designated. If you are in your 20s or 30s, would your parents or spouse know what you would want if you couldn’t speak for yourself and you had a devastating outcome? Are your values in agreement with theirs? Do you trust them to make the right decisions for you?
All of us have rights, even when we are unable to speak. All of us have choices, even when we are unable to speak. We can protect ourselves from receiving life-sustaining measures or treatments that we do not want or we can receive life-sustaining measures or treatments in the events that we would want them. And how are we to know what we’ll want in which events? By doing the work. By meeting with a healthcare professional who can discuss advance directives honestly and openly. If you do have a chronic condition, have you talked about what it will look like as the condition worsens or are you aware of the future choices you may have to consider? If not, why not?
And as far as Covid goes, I personally sat with someone who was Covid positive and admitted to the ICU and they wanted advance directive information because they needed to go on the ventilator. We went through the documents; choices were made and family members were notified and the patient could rest peacefully knowing their wishes were known and would be honored. That was such a brave thing to do in that moment. Many of the families I worked with were not prepared and were caught off guard and it was so very difficult to know if they were doing “the right thing” and what the patient wanted. Prepare yourself.
Take the time, have discussions in advance, voice your opinions and choices to your family and healthcare provider, choose your healthcare agent and talk about this with everyone that would be around you when you needed them most. And if you need support or don’t know how or where to start, I can help you.
“You can avoid reality, but you cannot avoid the consequences of avoiding reality.” -Ayn Rand