Choosing a healthcare decision maker

What does a healthcare decision maker do?

It’s a significant responsibility to be a healthcare agent. This person is essentially making themselves available to be called upon to make critical decisions. The best preparation for the role is to have in-depth conversations together.

Most often, an agent plays a very short-term role. For instance, they are contacted for consultation during a medical crisis (an accident, surgery, or sudden decline at the end of life).

Some surrogates may need to serve for months or years. For instance, a person with Alzheimer’s disease may live for many years unable to understand and participate in making healthcare choices. The healthcare decision maker would be in charge of saying yes or no to all manner of things for the duration of that person’s life (e.g., flu shot, changes in medications, diagnostic tests).

Overall, your healthcare decision maker will need to do the following:

• Learn from you about your values and respect those values. The person you choose must be willing to talk about sensitive topics. You might find that it’s a bonding process to talk together about what matters, what makes life worth living. But you will also need to discuss the nitty-gritty; for instance, life support measures such as CPR, ventilators, and tube feeding. Your surrogate must be willing to act according to your preferences, even if theirs would be different.
• Ask questions and advocate for you. The person you choose does not need to have medical training. But they do need to be comfortable asking questions of healthcare providers, perhaps repeatedly. They may need to press a point for clarification. Or go to bat for you over a particular action, even if there is resistance from medical professionals or members of your family.
• Work with doctors to make decisions. If you are not able to make decisions for yourself, your agent will discuss the pros and cons of your treatment options with the medical professionals involved in your care. Your agent must then apply their understanding of your priorities to select the course of action they believe YOU would have chosen.
• Communicate clearly with other family members. Ideally, you will have spoken with your family and friends about your values, advising them of what is important to you in your daily life and what you want to be sure to avoid. It’s important that you also tell them who you have chosen to be your healthcare agent and why (for example, “I know he can stay calm around the white coats!”). Although your agent does not have to justify decisions to anyone, it is optimal if they can discuss with family members why they think a particular treatment is what you would have preferred. Everyone will rest easier knowing that your wishes were followed.

Who should you pick?

That depends on whom you think can best perform the duties outlined above. If no one has been authorized, the medical team may turn to your spouse or whoever has shown up on your behalf.

You might assume that your spouse or life partner is in the best position to take on the surrogate role. But your life partner may have been in the same accident with you, or be too emotionally distraught about your condition to make thoughtful decisions, or have difficulty letting you go even though they know your wishes.

Think through the qualities listed below. Your doctor cannot serve as your agent decision maker. If you are an older adult, you may want to consider someone from a younger generation. They will be less likely to have their own health issues or to have passed on before you need their help. If there are no appropriate family members or friends, you might want to consider hiring a professional. Talk to an estate planning attorney. An Aging Life Care™ Professional is an expert in aging and eldercare and can also help you find the right person to fulfill this role.

Qualities to consider

• Can they follow the Platinum Rule? “Treat others the way they want to be treated.” Your healthcare agent does not need to have the same life priorities that you do. They do, however, need to understand yours and be able to make decisions based on your definition of an acceptable quality of life.
• Are they a good listener? You will likely have several conversations. Some will be fun topics, such as “What’s on your bucket list?” Others will be more reflective. Does the person you have in mind tend to listen well and seek clarification when unsure?
• Are they calm in a crisis? Sometimes decisions need to be made quickly. You want your decision maker to be able to set emotions aside to focus logically on the issues at hand.
• Can they be persistent when needed? Medical providers often speak quickly and in medical terms. They don’t intend to be confusing, but your agent may need to ask them to repeat, clarify, or go more slowly. It’s their role to advocate for what you would wish. That may mean pushing back when others—professionals or family members—are pressuring for a direction counter to what you have stipulated.
• Can they be diplomatic? While a certain amount of self-confidence is needed, the ideal agent can calmly explain their reasoning to your family. The ability to communicate well and offer reassurance will help everyone accept the decision and whatever the outcome is, with the least amount of distress.
• Are they willing to take on this role? While it is an honor to be chosen, it’s also a responsibility. Be sure you have their agreement before you name them in any legal documents.

What if you can't think of someone?

Many of us don’t have someone in our lives who both fits the criteria and is willing to take on this role of responsibility. If you find yourself in this situation, consider the following:

• Complete an advance healthcare directive and add to it as much detail as you can about your wishes and priorities. Write out on a separate sheet all that you would like to be known and considered by professionals if they are left to make decisions for you. When you have your advance directive notarized, have the notary add your statement to the advance directive so it’s part of the legal record. (Remember, you can change and update your directive and statement at any time.)
• Consider giving a copy of your completed advance directive to a neighbor or friend, someone who you are not asking to take on the role of surrogate decision maker, but who might know if you have been taken to the hospital. Ask if they would be willing to bring your directive to the hospital to give to the medical team if such a crisis were to occur.
• Meet with your primary care physician specifically to review your advance directive and ensure that it is in your medical record.
• Look into the option of hiring a professional to become your healthcare agent. This would mean writing them into your advance directive and having conversations with them about your wishes. They will likely have you sign a contract and pay a fee for being on standby, as well as pay a fee should their services be needed. An Aging Life Care™ Professional can help you find a professional to fulfill this role.
• Keep a copy of your directive handy: In an envelope on your refrigerator. In your car glove compartment. Packed in your suitcase. Online in “the cloud.”

Further considerations

There are a few other factors to bear in mind:

• Is your surrogate nearby and readily available? Nearby is ideal but not necessary. Accessibility is key. These days, much can be done by phone—conversation with the medical team, photos, videos—that make a decision maker’s physical presence less necessary. More important is a agent’s availability by phone: Are they likely to be tied up in work or other activities for hours or days at a time? Or can they be reached quickly?
• Are they willing? Before you write their name in your advance healthcare directive, ask them. It’s possible that they are not feeling up for the task. Better that they voice that now. Thank them for considering it and move along to your next choice.
• Name each agent independently. Especially if you have more than one child, it might be tempting to name coproxies who would share in decision making. This is not recommended. Trying to reach two people can delay critical response in a medical crisis. And if there is disagreement, more time is lost trying to reach consensus.
• Do choose one or more surrogates. Advance directives allow for a hierarchy of surrogates. It could be that the first person on your list simply isn’t available—perhaps traveling abroad—at the time of your need. In that case, the second identified surrogate would take over responsibility. Of course, you will need to prepare each surrogate equally well through conversations so they are primed for their potential role.
• You can change your mind. You can pick a new healthcare decision maker any time. A person who seemed appropriate at one time in your life may not be at another—whether because of changes in them or in you. In fact, choosing a healthcare decision maker and having those key conversations is not a one-and-done proposition. Times to review and update your complete advance directive include the following:
  • Receiving a serious diagnosis. Your perspective on what matters most may change within this new context.
  • Significant life events, such as a move, the death of a spouse, or a divorce.
  • Once every ten years, say at the turn of a decade (your fiftieth, sixtieth, seventieth birthdays) and every couple of years once you reach Medicare age.
  • Going on a big trip. If you are traveling internationally, that may expose you to risks you would not otherwise face if you were on your home turf.

What next?

Once you have decided whom you would like as your healthcare agent (with one or two backup decision makers),

• talk with the person to see if they are willing. Consider referring them to our article, If you are chosen to be a healthcare decision maker.
• make time to engage in key conversations. You can’t cover every eventuality. But if they understand what matters most to you, they can make an informed decision if a situation arises that wasn’t on your radar.
• tell other family members about your decision. Both who you have chosen and why. Also let them know about your basic position on life support. Do you lean more toward the “do everything” approach or more toward “keep me comfortable and let nature take its course”?
• complete an advance directive. This formal paperwork gives your healthcare decision maker legal authority. Download the form for our state.
• distribute copies of your paperwork. At a minimum, keep a copy handy at home for yourself and give copies to your healthcare agent and alternates and your primary care physician. There are other places you might want to store a copy. Learn more in our article about advance directives.