Advance Care Planning 101: Determining Your Health Care Proxy

In a time of medical uncertainty, like being under anesthesia during surgery, who do you want to speak on your behalf? It’s an important question to consider as part of the advance care planning process.

Last month, an NBTS blog post covered what advance care planning is and why advance directives are important. Determining your health care proxy is a critical step to ensure your health care wishes are incorporated by your health care team.

What is a health care proxy?

This term varies by state, but generally, a health care proxy is the person that you would want to speak on your behalf regarding medical matters if you cannot speak for yourself. A person in this role can also be called a health care agent, health care surrogate, patient advocate, or durable medical power of attorney. 

You can make your decision known by completing the appropriate legal document for your state, which will give the designated individual the authority to make decisions on your behalf if you are unable to do so.

Key questions to consider when selecting a health care proxy:

• Do I trust this person with my life?
• Do I trust this person to make the tough decisions consistent with my wishes without letting their personal beliefs and emotions interfere?
• Will this person be comfortable making quick decisions in a changing situation?
• Do I want this person to be a family member (e.g., spouse/partner, parent, etc.) or not (e.g., friend, faith community member, etc.)?
• Who would I want to be my alternate proxy in case my primary proxy is unavailable?

You can revoke and change your proxy at any time, but please be sure to update any legal forms you previously submitted.

Once you have selected your health care proxy, it’s important that you notify them of your decision.

“We think it’s super important that the document is not just living in a filing cabinet or somewhere in a safe deposit box, but that people know who is tapped for that role,” said Kate DeBartolo, Senior Director at The Conversation Project, an initiative of the Institute for Healthcare Improvement dedicated to helping people communicate their wishes for care through the end of life. “These conversations are how we make sure that if a family of five shows up and everybody’s saying ‘I know what mom wanted,’ there is really one person who is identified as the final decision maker.”

Regardless of whom you select as your health care proxy, it is wise to share your decision with close family members so there is no confusion in an emergency when medical decisions must be made quickly.

“There is grief with any type of diagnosis, even if there is not a loss,” Kate said. “How complex or complicated that grief is can be eased by these conversations so that you’re not dealing with siblings fighting or a kid from out of town coming in and trying to change the whole plan. Identifying and articulating to others who I am designating as my proxy may help avoid these challenges.” 

Additionally, you will want to notify your health care provider about your decision and provide them with the name and contact information for your health care proxy.

As a patient, what types of conversations should I have with my health care proxy?

While these conversations can be very difficult, it’s important to discuss your plans and wishes with your loved ones and health care proxy so that they know what to expect and can make decisions in accordance with your wishes.

First, ask your desired health care proxy if they are comfortable with this role. An example of what to say can be found in The Conversation Project’s “Guide to Choosing a Health Care Proxy”: “I’d like you to be my health care proxy. That means you would be the person who would make medical decisions for me if I can’t make them for myself. I would share what matters to me in my care, so you wouldn’t have to guess. Is this something you would be comfortable doing?”

You then will want to explain what it means to be a health care proxy. You can share a copy of The Conversation Project’s “Your Guide to Being a Health Care Proxy” with them to read on their own while also addressing the following key points:

• As a health care proxy, you will only make decisions when I cannot do so.
• Your responsibility is to make decisions consistent with my wishes, values, and beliefs. 
• I will provide you with a copy of my signed advance directive and health care proxy form, in addition to having conversations with you about my wishes.
• In a situation where I am unable to make decisions, you would talk with my health care team, review my medical records, and ask questions to get the information you need to make decisions and advocate on my behalf.

In the first post in our advance care planning series, we provided key questions to help you think about what matters to you. We suggest sharing your responses to those questions with your health care proxy to help inform their decision-making process. The more information you can share with your health care proxy about your preferences, the better equipped they will be to make medical decisions that align with your wishes and values.

In addition to having these conversations with your health care agent, you can give them a copy of your health care proxy form and all completed advance directive forms. It can also be helpful to share the names and contact information of essential health care professionals, such as your primary care doctor and neuro-oncologist.

As time goes on, your situation or opinions change. Whether you want to change something you expressed in your advance directive or even change your health care proxy, you can do so by updating your state’s legal form. Be sure to communicate these changes with your health care proxy and family as well.

As a care partner, how can I help start a conversation about health care proxies with the patient?

Your loved one has a lot to process following a brain tumor diagnosis, and they may feel overwhelmed. Advance care planning may not have even crossed their mind.

Here are some conversation prompts for your loved one who hasn’t shared their advance care plans with you:

• I read a blog post by the National Brain Tumor Society about advance care planning, and it made me realize that I’m not sure if you’ve done this or thought about who your proxy is.
• I saw something in the news or a TV show I was watching, and I wondered if you’ve thought about a health care proxy.
• I was recently getting my affairs in order, and I thought about who I wanted to be my health care proxy, along with how I would like to be treated. Is that something you have thought about?

A conversation like this can feel heavy for all involved, so you can discuss it in more than just one formal sit-down conversation, especially if someone is not ready to discuss this topic at that moment. Framing questions in a yes or no format can be helpful if it is a challenging topic to address with your loved one. 

Questions to consider asking:

• Is it correct to assume that you would want me to be the decision-maker if something happens? Or is it right to think you want [insert person’s name] to do that?
• Based on past conversations we’ve had over time, it seems like this [health care decision] seems to matter the most to you. Does that sound right?
• Do you want all possible medical treatments to be used to keep you alive, even if it means being on life support?
• Do you want to be kept comfortable, even if it means foregoing life-sustaining treatments?

“Answers to yes or no questions can still give a lot of relief to a decision-maker,” Kate said. “This isn’t just about the end of life wishes. It’s how they want to live their life to the end. What are some choices I can help you be aware of so that I’m doing right by you? You’ll be in charge of everything, and I want to be sure I can be your voice and make choices on your behalf.”

These yes or no questions can be a solid foundation to help engage in open and honest conversations with the patient to understand their wishes and values regarding medical care.

Next Up: Preparing Important Paperwork

In part three of our Advance Care Planning blog series, NBTS will highlight important paperwork to gather and prepare for your health care proxy and family.

TAGGED WITH: brain cancer, brain tumor, caregiving, Advance Care Planning, Health Care Proxy

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