A Future Gift for Your Family
Or why you should observe National Healthcare Decisions Day
Dying in the hospital comes with a lot of decisions.
“Should the ventilator be removed? Should we do CPR? Should we insert a feeding tube?” Just to name a few.
If you are the one dying, you are most likely not going to be in a state to make those decisions yourself. So who will make them for you? The decision making will likely fall to your family and loved ones. And they will be shocked, overwhelmed and ill-prepared. Not only are they being confronted with the grief of losing you, they now have to make difficult decisions by interpreting what you would want.
Benjamin Franklin notably said, “In this world, nothing can be said to be certain except death and taxes.” I appreciate the sense of humor that went into designating April 16 (the day after Tax Day) as National Healthcare Decisions Day. This is not a well-known holiday, but I think it’s one we all should observe.
This is a day on which you can start the conversation of what your healthcare wishes can be when you can no longer speak for yourself.
Did you know that 92% of Americans believe it's important to discuss end-of-life care, but only 32% have done so?
The chasm of belief in potentially having the conversation vs. actually following through is staggering.1 I suspect it is because to discuss end-of-life care requires acknowledging that we are mortal. It means talking about death, a topic so many of us try to avoid at all costs despite its inevitability. In the hospital however, these are the conversations we have everyday, but often too late.
Linda and Frank were twins in their mid-fifties who sat on either side of me in the family consultation room. I listened as the ICU doctor told them their mother was not going to recover from her illness. Death was certain, it was just a matter of how and when. If they did nothing, she could stay on the ventilator with all the various medications keeping her alive for days or weeks maybe, until her heart gave out. Or they could make the decision to allow the medical team to remove the ventilator and be with her when she died. The doctor was not-so-subtly hinting that the latter was the best option.
The doctor excused himself to allow them space to talk. They requested I stay behind. I felt like a referee as they both tried to convince each other of their opposing viewpoints. After 40 minutes of turning my head side to side as if watching a tennis match, they wanted a tiebreaker. They turned to me and demanded, “What would you do?”
Healthcare providers get this question all the time, not just at the end of life, but anytime there is more than one option or course of treatment to take. Physicians get asked this frequently and it is so tempting to answer, but that harkens back to the paternalism of healthcare and disempowers the care recipient. But I also understand why the asking happens. People are faced with impossible decisions and are trying to do their best for themselves or their loved ones.
I took a deep breath as I formed the words to answer the twins. “You two know your mother better than anyone, what do you think she would want?”
Blank stares, accompanied by a terse response, “I don’t know, this isn’t exactly dinner conversation.”
I tried again, “Did your mother ever know anyone else in a similar situation? Maybe she talked about what she thought should happen to them?” I tried to help them find some clues to solve this mystery.
More blank stares, but then some wheels started turning as their eyes looked upward. Frank, who had been arguing to “do everything possible to keep mom alive at all costs” spoke, slowly and softly at first, looking at his sister. “Do you remember Miss Norma?”
Miss Norma was their neighbor when they were children. She had a stroke in her home and they watched the ambulance from the end of the street. Miss Norma was in hospitals and rehab centers for the better part of a year, not recognizing anyone, incapable of understanding who she was or where she was. Their mother had said, “thank goodness” when she died after a year of languishing and that it would have been “a mercy if she had gone quickly without all that suffering.”
“We need to give mom that mercy.”
We can give our families a future mercy. Talking about what you would want done (or not done) in a healthcare setting gives your family the gift of knowledge. In naming what you would want to happen to you if you cannot speak for yourself, you take the burden off your family to decide. In their time of heartache, the last thing they need is confusion and guilt added to the mix. Delineating our healthcare wishes is a step we can take to lessen our family’s pain.
Linda and Frank were just one of countless families I have sat with in the ICU who didn’t know what care decisions to make because they didn’t know what their loved one would want. Families become paralyzed with indecision and weighed down by guilt of “not wanting to be the one to decide to pull the plug.”2 Many have told me, “How will I live with myself if I give up on him?” This is to say nothing of the families with members who adamantly disagree and come to blows over the decision and the contention fractures relationships.
Advance Directive: What it is & How to do it
An Advance Directive (AD) is a legal document that has two parts to it. The first is naming a Health Care Proxy - someone who will make medical decisions for you if/when you cannot speak for yourself. This does not need to be the same person as your “Legal Next of Kin.” It should be whoever you trust to act in your judgment. If you don’t name the person, it goes to whoever is closest to you legally. This could be an estranged spouse who you haven’t spoken to in years (I’ve seen it happen). When you pick this person, put it in writing and tell the individual you are naming them and what your wishes are, so they have a sense of how to act. You can put a second and third back-up person as well in case your original choice is unwilling or on a 50 day cruise with no cell phone connection (true story).
The second part to an Advance Directive is your Instructives for Living Will. This is a little more complex, as it spells out what specific medical interventions you would/would not want. Filling this out is extra credit. If you do nothing else - do the Health Care Proxy paperwork and have some conversations with anyone who will listen about how you want to be treated.
Laws vary by state in the U.S., but in many places, you do not need a lawyer or a notary. You can fill out the paperwork yourself and then have two witnesses sign it. This directory has your state’s official form. There are also great resources, guides and FAQs here and here.
My favorite Advance Directive document is the 5 Wishes Advance Care Planning Form. You do have to pay for the form ($5 paper or $15 digital), but I like it because it’s user friendly. It is longer and includes options that you might want done that you wouldn’t have thought about. For example, I circled that at the end of my life, I’d like someone to massage my hands and feet with lotion. (In fact, I’d like that now, why wait?)
The best time to consider your own death is right now
Yes, thinking about your own death is never pleasant. But I will stand on this soapbox because I see firsthand the ramifications of not having Healthcare Decisions made in advance. It is not an if, but a when we will need them. If I could be like Oprah handing them out all over the place (“You get an AD, You get an AD!”) I would. I have control issues. That is probably an understatement. I tell my family what they should do on a daily basis (“Pick up your socks” is my most frequent refrain these days). Therefore, you bet I am going to tell them about my medical wishes in advance. I suggest we all become control freaks.
Let’s avoid burdening our next of kin with the impossible task of trying to retroactively read our minds and the anguish of making those decisions for us. And then, after filling out the paperwork, have a conversation with your loved ones about it, so that your wishes are clear.
In my hospital, the responsibility of overseeing Advance Directives falls to the chaplain. While anyone can help fill out these forms (and in many hospitals it is social work or patent experiences) having the chaplain talk through these life and death scenarios makes a lot of sense. Sometimes when I am dispatched to help a patient fill out this paperwork, a much deeper conversation takes place about grief and closure, or lack thereof. It becomes an opportunity for people to reflect on what they want, sometimes based on what they saw their loved ones go through at the end of their lives. But I would be happy if you made this part of my job moot by thinking through this before I walk into your hospital room or have to sit with your family in the ICU.
We need to make death and planning for it a “dinner time” conversation.
What’s preventing you from filling out an Advance Directive today?
How have you been comforted by knowing your loved one’s wishes?
How might you give your family this gift?
Who do you need to send this post to in order to nudge that conversation?
For more on thinking about these questions of Advance Care Planning and attitudes, including further citation on the statistics read this article: https://www.npr.org/sections/health-shots/2023/05/29/1177914622/a-natural-death-may-be-preferable-for-many-than-enduring-cpr
“Pulling the plug” is not the medical term and I think it’s a problematic phrase. I instruct my chaplain interns to use the correct terminology - terminal extubation or withdrawl of mechanical ventilation. However that is the colloquial phrase I hear from patients families over and over again.
This is vital information Christine, thank you. I would find it tricky to be a chaplain so I take my hat off to you for doing this difficult work. I would find it especially difficult not to speak up if someone asked what I would do because I have strong opinions about being kept alive without any quality of life. I am very fortunate that my parents were vocal about their wishes.
agreed. it should be a dinner time conversation, not when emotions run high in a healthcare setting. thanks for trying to normalize it.