If you are a decision maker

The healthcare decision maker's role

At the most basic level, your job is to help your loved one stay in control of their health even when they are not conscious or otherwise able to make decisions. As their alternate voice, you empower them to speak for themselves.

The most likely time you will be called into action is during a health crisis. If it is at the end of life, you may need to make choices regarding life support. If your friend or relative has a long-term chronic condition, they may involve you in health decisions even if they are still the one making the final call. Perhaps you have been participating unofficially in this way already.

Important conversations

In preparing for this role, it is important to have several key conversations.

Because healthcare decisions are so intimately connected to decisions about quality of life—what makes life worth living—in many ways your job will be to understand what matters most to the person you care for.

Learning what your relative values now can be fun. Help them think about their “bucket list.” Anything you can do to help get things checked off? Even a seriously ill person who may not have a lot of stamina will have goals: To see a grandchild graduate. To visit with a sibling one last time. The sooner you start these conversations, the greater the chance you can help your family member realize special goals or milestones.

For all of us, what matters most changes as life circumstances change. Keep these conversations going over time. And start now, before a crisis.

The tasks involved in being a healthcare decision maker

In addition to conversations about what matters, there are other rights and responsibilities to the position.

• Doctors will turn to you for decisions. Medical professionals will explain the treatment options to you when your loved one is unable to participate in decision making. Based on this consultation, you will decide which course of action best fits your relative’s wishes and priorities.
• You will need to understand your family member’s medical condition. This requires some preparation. It’s ideal if you have been involved in discussions before a crisis. And better yet if you know your relative’s medical history and medications. If you live too far away to participate in medical appointments, talk with the person you care for early on and stay in touch so you are current on latest developments. When you must act in a decision-making capacity, you have the right to look at medical records, lab reports, etc., and to ask questions and have them answered to your satisfaction.
• Your tenure could be short term or long term. For instance, you could be asked to make decisions temporarily while a loved one is in surgery, in case something unexpected occurs. Alternatively, you could be making decisions for several years if your family member has dementia and can no longer weigh treatment options. Or it may be that you have to step in only at the very end of life, perhaps in the case of a coma, to make decisions regarding life support.
• You may or may not want to consult with other family members. In some families, tensions run deep and cooperative decision making is unlikely. (This is VERY common.) You may want to consider the insights of others, but in the end, each decision is yours alone. You must be at peace in yourself as you reflect on the decisions you make and how they match the course your loved one would have chosen.

If you feel a bit daunted by the responsibilities of this role, you are not alone. All you can do—or anyone can ask of you—is that you give it your best. A nurse care manager is an expert in the biopsychosocial aspects of aging and eldercare. You may want to ask your loved one to connect with one of our professionals and arrange for them to be available on call to offer guidance if needed.

The key is that you respect the role and the fact that you’ve been chosen. The person you care for believes in your ability. That’s why you were selected. Sure, you may in hindsight think that you might have handled something “better.” But your commitment to giving each and every situation your considered attention is what is being asked of you. Not perfection. Giving your best is all any of us can do. So, ask questions. Get prepared ahead of time. Think in terms of fulfilling your loved one’s wishes. That is a gift you are uniquely qualified to give.

And if this isn’t for you, that’s okay. This is not something to go into with doubts. Perhaps this responsibility is more than you want to take on. Maybe family politics or other concerns in your life make it inappropriate for you at this time. Respect your own limits. Speak honestly with your relative. Thank them for the honor, and let them know that this isn’t a role you feel able to fulfill at this time.

A note about finances

Some family members worry that they may be held financially liable for any medical procedures they authorize on a loved one’s behalf. Not so! Your role as healthcare decision maker is entirely separate from your relative’s finances.

To be sure, their finances will play a part in decisions you make. Some options may not be available—even though they would be your loved one’s first choice—because your relative simply doesn’t have the funds. But you will not be held responsible for any payments.

Stories of healthcare decision makers

If you’ve been chosen to be a healthcare decision maker—also known as a “healthcare agent”—for a friend or relative, your relationship will become much closer. You will be discussing very important, very intimate life decisions.

It might help to read some real-world stories.

• John had been scheduled for a fairly routine hernia surgery. Since John would be under general anesthesia, Cooper—his son and healthcare agent—chose to be on hand just in case. During the surgery, doctors observed that John’s appendix was inflamed. They contacted Cooper and explained it was better to remove the appendix now while John was still under general anesthesia rather than perform a second surgery later. Cooper knew his dad was not fond of hospitals and would not like having to return to the hospital for an emergency appendectomy. Once Cooper was assured that Medicare would cover the procedure, he authorized the additional surgery. John came out of the recovery room quickly and was back to himself by the next morning. The situation was explained to him, and John was grateful that his son had made the decision that he did. When he had fully revived from the anesthesia, John was also back to making his own healthcare decisions.
• Guadalupe’s cancer. Guadalupe and her daughter Sofia had agreed many years ago that Sofia would be her healthcare agent if Guadalupe could not speak for herself. After Guadalupe was diagnosed with cancer, Sophia tried to go to every appointment. When the time came to decide on radiation or chemo, together they discussed the pros and cons of each with the doctor. Guadalupe continued to make her own decisions, but she liked having Sofia’s input in the discussions. Sofia benefited by learning the reasons behind Guadalupe’s choices. Guadalupe came through the treatment very well and is four years in remission. She and Sofia grew closer during this process. If the time should come in the future when Guadalupe is unable to voice her preferences, Sofia feels confident that she can make the choices her mother will have wanted.
• Augusta has Alzheimer’s. She was diagnosed five years ago and had to move to a memory care community last year. She can no longer make decisions for herself, so all medical decisions are made by her daughter, Alyssa, who is her healthcare agent. If there is a suggested change in medications or a need to go to the hospital, Alyssa must give the approval. For instance, last month her mother had pneumonia. Alyssa was asked if Augusta should go to the hospital or not. This was the fourth pneumonia in six months. From conversations she had had with her mother earlier, Alyssa knew her mother wanted everything to be done to stay alive. Even though Alyssa herself would not have wanted this, she agreed to another hospitalization because that was her understanding of her mother’s wishes.
• Kai’s father, Daniel, had heart failure. He hadn’t been sleeping well. His lower limbs were often swollen. He was too tired to go out of the apartment and do things with his friends at the assisted living community. The medication side effects were disagreeable. In addition, Daniel had a very painful arthritis in one knee. He wanted a knee replacement, but his heart wouldn’t tolerate it. So Daniel spent most of his days in his recliner watching TV. Daniel had told his son that he had lived a good life, but his quality of life now was not good. He could no longer do many of the things that mattered most to him. He was ready to go. While at work, Kai received a call from the hospital. His father had blacked out and had been brought in. Daniel’s heart was struggling. They had given him medications and put him on a ventilator, but it didn’t look good. Kai went to the hospital and got to hold his father’s hand. He saw the ventilator was the only thing keeping his dad alive and that the process of forcing oxygen into his lungs was distressing for Daniel. Kai talked to the doctors about his dad’s chances for recovery and what his life would be like if they kept him on the ventilator. Knowing Daniel’s preference to not prolong death, Kai asked that they keep his dad comfortable, with a plan to unhook him from the ventilator. Kai then called his dad’s church and asked that the priest come to deliver last rites. Once that was done, the staff removed the machinery and Kai was at the bedside as his father gradually stopped breathing and slipped away.

Action steps to become a healthcare decision maker

If you have agreed to be a healthcare decision maker (often referred to as “healthcare agent”), here are the steps to take:

• Make time for some conversations. Probably multiple conversations and ideally, well before a crisis.
  • Find out what matters to them. Learn what “quality of life” means to them. What makes life worth living?
  • Learn more about their values regarding length of life (quantity) versus quality of life.
  • What are their fears or concerns? What would be “worse than death”?
  • Find out how much they want to know about their medical conditions and how much, or little, they want to be involved in decisions.
• Optimally, ask your relative or friend to make their wishes known in the form of an advance healthcare directive.
  • Make sure you are named in the directive as the healthcare agent.
  • Most directives ask about life support measures. Encourage your relative to complete this section of the document.
  • Copies should be distributed to you and any alternate agents (in case you are not available). Your relative should keep a copy at home and give a copy to their primary care provider.
• Encourage your relative or friend to review their directive with their primary care physician.
  • They can ask the doctor to meet with them for this specific purpose alone—to discuss their wishes and goals of care.
  • The primary care provider should keep a copy of the advance directive and/or ensure it is in the electronic medical record.[haspolst]
  • Depending on your loved one’s current state of health, it may be appropriate to work with the doctor to complete a MOST (Medical Orders for Scope of Treatment). This is a separate document that gets very specific about life support measures. It can only be completed with a doctor. If your relative has a MOST, it’s best if you know what’s in it and can confirm it’s the same instructions as in the advance healthcare directive. [/haspolst]
• Ideally, your relative would talk with other family members about who they have chosen as their healthcare agent(s), and about their wishes and priorities. Possibly even share their advance directive. Some families are hesitant to talk about these matters. But having a conversation with others can help minimize conflict or confusion later. Even one conversation can go a long way to preventing distress when a crisis arises.