Nancy E. Lundebjerg, MPA
Chief Executive Officer
American Geriatrics Society
Health in Aging Foundation

In my last post, I shared some personal reflections on the importance of completing an advance directive—what the process has taught me about my needs, my wishes, and the type of voice and control I want to have should I ever need someone else to make healthcare decisions on my behalf.

That last point is quite important, and—in honor of today being National Healthcare Decisions Day—I thought I’d walk through some of the questions and considerations that helped drive my own search for a healthcare proxy. These are built on discussions I’ve had with this person—one who knows me well—about the questions, answers, and decisions that are important to me. While these points reflect my own thoughts and perspective, maybe you can use them as a guide for considering what’s important to you—and how you’d want those points acted upon should someone else need to make important health decisions on your behalf.

 Who You Are, Mr./Ms. Healthcare Proxy?

• You are my advocate and you are most definitely the person who has final say in decisions if I’m unable to make them for myself. Collaborative decision-making in tandem with my doctor is OK—but you know what I would want better than most.
• You will not let anyone rush you through a conversation—you’ll make sure all your questions are answered.
• You’ll make sure I’m getting the best care possible—you’ll know who my doctors are and where they trained.
• You are someone I trust to do whatever needs to be done—and that includes letting me go gently if that is the right decision. And by “right”, I mean your right—others can advise you, but the decision is yours to make based on what we’ve talked about and what you know about my wishes, needs, and expectations.

What You Know about Me

• You know that quality of life is more important to me than length of life.
• You know that I, personally, don’t have religious or moral beliefs that are relevant to decisions about life-sustaining treatments. You should make those decisions based solely on my medical condition and my long-term prognosis (the likely course of the disease or condition).
• You know how I feel about artificial nutrition and hydration. I personally think it’s an OK short-term solution if you are “waiting and seeing” if I’ll recover, but please don’t pursue it for me if I’m in a persistent vegetative state or if scans show no activity in a substantial portion of my brain.
• You know that I would ask for prognosis, weigh all the facts, make a decision, and then stick to that decision.
• You know that I firmly believe that there are no wrong decisions.
• You know that I am not afraid of living with disability nor am I afraid of dying.

What You Understand About My Long-Term Prognosis

• Get the facts and the prognosis from the doctor(s) overseeing my care.
• Ask about how I will physically function. Ask if I’ll have trouble with my mental capabilities. If I will, ask what that means in terms of my ability to function.
• Weigh those answers within the context of what you know about me and make your decisions accordingly.
• Finally, be sure to make time for yourself—being my (or anyone’s) proxy is not an easy task. I know, I’ve been there and done that. Most of all, know that I am going to be A-OK with whatever decisions you make. I trust you—and that’s what this relationship is all about.

Nancy E. Lundebjerg, MPA
Chief Executive Officer
American Geriatrics Society
Health in Aging Foundation

Have you ever imagined a time when you are unable to make decisions for yourself? Who knows how you would make decisions? What information would you want? What do you think about life-prolonging treatments? Who knows how you feel about dying? Who knows you?

Have you looked at that moment through the eyes of family who may have no—or every—legal authority to make decisions for you? Have you thought about the range of decisions that might need to be made for you—each decision likely leading to another decision and accompanied by concern that someone might not be doing what you would do if you were making this decision for yourself?

We don’t like thinking about those types of things—at least my family doesn’t, and I wouldn’t be surprised if yours didn’t as well. You might, like me, have an advance directive gathering dust in some corner of your home with another copy in the hands of your proxy and yet another copy stapled into a chart for a doctor you haven’t seen in more than fifteen years because you’ve moved on and so have they. You may have completed an advance directive as a part of writing your will, as someone recently told me they had, so you can mentally check it off your to-do list. Health Care Proxy/Advance Care Directive. Done.

But maybe we should start thinking about this as a conversation as one addressing how we would want to live rather than one focused on how we would want to die. I know how I want to die–without a long decline into disability and dementia. I also know that kind of death can be hard to come by. Simply put, in this day and age, we can live for much longer than we could before.

If you look at Advance Care Directive forms, you’ll see that most ask for some specificity. As an example, my home state of New York allows me to check off that I don’t want blood transfusions—just one of the 11 examples that the New York form provides. It’s enough to make my head spin.

To be honest, I am not sure I could outline every possible scenario in a way that would be a road map for my proxy. The thing I know from being a caregiver is that there will be a lot of decisions and a lot of nuances to those decisions. I know they will start small and build to a crescendo. And, at least for me, it’s been helpful to balance sharing my wishes with remaining flexible—not trying to control everything with a lot of instructions. That’s one of the most helpful parts of selecting a healthy proxy when completing an advance directive—you can identify a person you trust to do whatever is in your best interests.

It’s important to have an Advance Care Directive form completed and a decision-maker identified. No less important is empowering your decision-maker to act on your behalf. More on that in my next post.