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Who Will Speak

For You?

How to choose and be

a health care proxy

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How to Choose a Health Care Proxy..............................2

Step 1: WHEN is the right time to choose your proxy? ..............3

Step 2: WHO should you choose to be your health care proxy? ......4

Frequently Asked Questions .. ................................6

Step 3: HOW should you prepare your proxy? .....................9

How to Be a Health Care Proxy

.. ................................11

The Conversation Project is dedicated to helping

people talk about their wishes for end-of-life care.

We developed the Conversation Starter Kit

as a useful tool to help people have conversations

with their family members and loved ones about

their wishes.

In addition to having the conversation, it’s

important to choose a health care proxy —

the person who will make decisions about

your medical care if you become unable to make

them for yourself. (This person is also called a

health care agent or Power of Attorney for

Health Care.)

TABLE OF CONTENTS

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How to Choose a

Health Care Proxy

Who would you want to make medical

decisions for you if you were unable to make

them for yourself?

A health care proxy (also called a health care agent or Power of Attorney

for Health Care) is the person you choose to make health care decisions

for you if you’re too sick to make them for yourself. Your proxy can talk with

your doctors, consult your medical records, and make decisions about tests,

procedures, and other treatment.

We cannot overstate the importance of choosing a proxy. Too many people

— including half of all the people over 65 who are admitted to a hospital —

are unable to make decisions for themselves.

Torke AM, Sachs GA, Helft PR, et al. Scope and outcomes of surrogate decision making among hospitalized

older adults. JAMA Intern Med. 2014;174(3):370-377.

Names for the PERSON you choose:

Health care proxy: The person you

choose to make decisions about your

medical care if you become unable to

make them for yourself (My brother is

my health care proxy.)

Health care agent: Same as above

(My brother is my health care agent.)

Power of Attorney for Health Care:

Same as above (My brother is my

Power of Attorney for Health Care.)

Surrogate decision maker: Same as

above (My surrogate decision maker is my

health care proxy).

Names for the DOCUMENT you ll out:

Health care proxy: Can ALSO refer

to the legal document in which you

designate the person to make medical

decisions for you (I lled out my health

care proxy.)

Advance directive: A general term

for any written health care instruction

specifying your wishes or naming a

proxy (I lled out my advance directive.)

To keep it simple, we’re using “proxy” for

both the PERSON and the DOCUMENT.

USEFUL DEFINITIONS

It can be hard to keep track of the various names that are used — both for the

PERSON you choose and the DOCUMENT you ll out. Here’s the gist:

Make sure you have chosen someone you trust to speak

for you in case you are unable to speak for yourself!

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Step 1

WHEN is the right time

to choose your proxy?

EARLY

When you come of age —

at age 18.

OFTEN

It’s good to review your

choice of proxy at the start

of each decade — when you

turn 20, 30, 40, 50, 60, 70…

AT A MAJOR LIFE EVENT

If you go to college

If you get married, divorced, or

widowed

If you have children

If you become eligible

for Medicare

If you are going on

a major trip

If you are newly diagnosed with

a serious illness

As we say in The Conversation Project,

“It’s always too soon, until it’s too late.”

Up until age 18, your parent or legal guardian usually serves as your proxy.

But once you turn 18, your parents are no longer your automatic health care

proxy. So everyone age 18 or older should complete a health care proxy

form — even if they’re perfectly healthy. If you’re over 18 and haven’t

yet chosen a proxy, the time is now!

 



Health care proxy forms

Each US state has its own health care proxy forms, which are available for free.

For more information visit: https://www.nhpco.org/patients-and-caregivers/

advance-care-planning/advance-directives/downloading-your-states-advance-

directive/

You can ll out your health care proxy form yourself! Some places require having

two witnesses sign, saying that they have seen you sign the form. (In most states

and countries, your proxy cannot sign as a witness.)

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Step 2

WHO should you choose to

be your health care proxy?

Remember: Your proxy is the person who will

speak for you if you’re unable to speak for yourself.

Being a proxy is not for everyone. Your proxy may have to make tough, quick

decisions on your behalf — including decisions about treatments, procedures,

even life support. Here are some questions to help you think about who you

would like to be your proxy:

Will the person make decisions that are in line with

your wishes?

Will the person be okay making decisions on your behalf even if

their own wishes are dierent from yours?

Will the person have a hard time making decisions on your behalf

because their emotional connection to you would get in the way?

Will the person be comfortable speaking up on your behalf?

Will the person stand up for you?

Will the person be okay with asking questions of doctors and

other busy providers?

Will the person ask for clarication if they do not understand

a situation or an answer?

CHOOSING THE RIGHT PERSON

A young woman in St. Louis originally wanted her mother to be her proxy. But

then she realized it might be too painful for her mother to be in that position.

So she chose a friend instead.

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Will the person be good at making decisions in

changing circumstances?

Your proxy might have to make fairly quick decisions along the way —

things like “Your mother has pneumonia. Do you want us to start antibiotics?”

or “Your brother is no longer able to take food by mouth. Do you want us to

insert a feeding tube?” Your proxy doesn’t need to be a medical expert,

but they should be someone who can apply your general values to

specic circumstances and make decisions that are consistent with your

expressed wishes.

NOTE: We don’t want to make being a proxy sound too hard. (Nobody

nds it easy to interrupt a busy doctor and ask them to “say that

again, slowly”!) At the same time, it’s important to consider who has

the qualities you need when the time comes.

WHO might be a good choice to be your proxy?

Parent

Spouse/Partner

Child

Sibling

Friend

Cousin

Trusted Neighbor

Someone from my congregation

Other

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Frequently Asked Questions

What if I want to choose more than one person to

be my proxy?

It’s generally advisable not to name two people to serve as co-proxies —

because if they disagree, the situation can become complicated.

The rules for this vary: some states and countries allow you to name co-

proxies, and some states and countries limit you to one at a time.

In all states and countries, you can name an alternate proxy if your

primary proxy is unable to serve. It’s a good idea to name an alternate

proxy.

What if I don’t want to pick a family member?

Sometimes people feel obligated to choose their spouse, or their adult

child — even when they don’t think that person is the best choice to

follow their wishes. It’s okay if you want to choose someone who’s not

a family member — even if your family pushes back at rst.

NOTE: Be sure you tell your family beforehand who your proxy is.

You can say, “I chose [my friend] because she’ll be able to speak for me

without the emotional conict my family members may face.” Even if

it creates tension, it is better for them to nd out who your proxy is

before a medical crisis.

TELLING THE FAMILY AHEAD OF TIME

A woman in Florida was the proxy for her husband. But his adult children

from a previous marriage didn’t know he had selected his current wife as

his decision maker. If he had told them about this ahead of time, it would have

allowed them to get used to the idea before a health crisis came up.

What if I don’t want my spouse/partner to be my proxy?

In many states your spouse may automatically be your legal proxy if you

haven’t named someone else. Sometimes, they may nd it too dicult to

agree to ending treatment for their loved one, even when you have made

your wishes very clear. In this case, it might be wiser to choose someone

else.

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FINDING THE RIGHT PROXY

A woman who lives in Hawaii wanted to choose a proxy. She started by

asking her husband. His answer, “I could never unhook you from anything.

I will hold your hand for 20 years even if you’re not responsive.”

Next, the woman asked her son. His answer, “I got it, Mom. I know you don’t

want any extreme measures to save your life. I’ll never let anyone hook you up.”

Finally, she asked her daughter. The daughter answered, “I hear what’s

important to you. And I know it depends on your prognosis and your chances

for recovery.”

Are there any rules about who CANNOT legally be my proxy?

Yes. The rules can vary between states and countries, but here are some

examples of a few US-based restrictions on who you can choose to be

your proxy:

You may not choose someone under age 18 (in the United States,

Alabama and Nebraska, under 19).

If you’re a patient in a health care facility, you may not choose an

employee of that facility (unless the person is a relative).

You may not choose a member of your current health care team

(your doctor, nurse, etc.).

Again, be sure to check your states and countries rules.

What if I want to change my proxy?

Sometimes people change their mind about who they want to be their

proxy. Maybe the person they chose moved away, or the relationship

changed — or for any reason, the person no longer feels like the right

one for the job.

It’s okay to change your proxy. If you do, be sure to ll out a new proxy

form and tell your family and your health care team about the change.

You can just say, “I’ve been thinking it over, and I wanted you to know

that I’ve decided to change my proxy. Thank you so much, but I won’t

need you to take on this responsibility for me.”

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What if I don’t have someone I would like to be my proxy?

Someone may not come to mind immediately. Remember that your

proxy doesn’t have to be a family member. It could be a friend, a more

distant relative, or someone at your place of worship.

Even if you don’t appoint a person to be your health care proxy (your

agent), it’s a good idea to complete the proxy form (the advance

directive), listing medical treatments that you would or would not want

if you became terminally ill and unable to make your own decisions.

TWO PEOPLE CHOOSE ONE ANOTHER

Two women attended a Conversation Starter Kit workshop at their church, at

the end of which participants were encouraged to choose a health care agent/

proxy. One of the women, age 32, had multiple health issues and knew she

needed to have a health care proxy. But she was single, had no children, and

was estranged from her family of origin. She felt she had no one to ask to be

her agent. The other, age 54, was a healthy single woman with two brothers

she felt she couldn’t rely on to be her health care proxy and had put o

choosing one for years. The women often sat next to one another during Sunday

service. One day, their pastor asked them if they might consider being health

care agents for one another. They turned to each other and nodded.

Is a health care proxy the same as an advance directive?

“Advance directive” is a general term for any written health care

instruction specifying your wishes or naming a proxy. It encompasses

both health care proxy forms and living wills. It states which medical

treatments you want or don’t want if you are no longer able to make

decisions on your own (for example, if you’re in a coma).

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

Step 3

HOW should you

prepare your proxy?

First of all, ask if the person can take on this role.

Start by asking the person if they are comfortable being your proxy,

and then sit back and listen to their answer. Do your best to answer

any questions they might have. And make it very clear that it’s okay

for them to say no.

You might start by saying, “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’m unable to make them for myself. I’ll tell you more about what

my values and goals are so you won’t have to guess. What do you think —

is this something you would be comfortable taking on?”

Make sure your proxy understands their responsibilities.

Your health care proxy has the legal power — and responsibility —

to make medical decisions for you if you’re unable to make them

for yourself. Your proxy can talk with your doctors, consult your

medical records, and make decisions about tests, procedures, and

other treatment. Your proxy is entitled to full access to your medical

information under federal privacy laws (commonly known as HIPAA).

Tell your proxy you will share what matters to you, so that they’ll have

a solid foundation for making decisions. And you’ll make sure everyone

in the family knows whom you’ve picked as your proxy and that you have

discussed your wishes with them.



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Make sure your proxy understands your wishes and choices.

It’s important that your proxy really understands your wishes and

choices regarding end-of-life care. Having these conversations before

a crisis, when there’s time to talk things through, will give your proxy

a strong foundation for making decisions when the time comes.

Set aside time to go through the Conversation Starter Kit

together, talking over your answers to the questions in the Kit and

your preferences on the “Where I Stand” scales. (It’s a good idea to

write down your responses to the Conversation Starter Kit, so that it

serves as a reference and a reminder for your proxy.) Additionally,

you could then review your states and countries advance directive form

to talk about some specic medical scenarios and your preferences

(like resuscitation, feeding tube, etc.).

What is the most important thing you want your proxy

to keep in mind?

After you talk through the Conversation Starter Kit with your

proxy, and talk through some medical decisions that might come up

and how you feel about them, it might be helpful to summarize it all:

“What matters most to me is _______________.” (For example, being able

to recognize my children; being in the hospital with excellent nursing

care; being able to say goodbye to the ones I love.)



Make sure your proxy has all the necessary information:

Give your proxy a copy of your health care proxy form and any

other advance directive documents you have lled out.

Make sure your proxy knows the names and contact information

for your primary care provider and any other providers.

Make sure your primary care provider knows the name and

contact information for your proxy.

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How to Be a

Health Care Proxy



Being a good proxy means speaking for the person when

they’re unable to speak for themselves.

Being a proxy is not about what YOU want; it is about what the person

you’re speaking for wants. In any situation where you have to act as

a proxy, ask yourself, “If they were able to speak and to make a

decision right now, what would they say?”

A SISTER TO HER BROTHER

“This was Mom’s choice. Now we have to be her voice.”

Being a good proxy is about doing your best.

Being a good proxy isn’t about being perfect — it is about doing the best

you can. Sometimes it’s not possible to follow the person’s wishes: maybe

they said they want to be home, but it is not physically, nancially, or

safely possible to keep them there. In that case, just do the best you can.

“The best you can do is the best you can do.”

A LETTER FROM A MOTHER TO HER FAMILY

“ If you are faced with a decision that you’re not ready for, it’s okay. I’ll try

to let you know what I would want for various circumstances, but if you

come to something we haven’t anticipated, it’s okay. And if you come to a

decision point and what you decide results in my death, it’s okay. I will die

because of my illness or my body failing or whatever. You do not need to

feel responsible.”

Remember:

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

What if someone asks you to be their proxy, but you are

not comfortable saying yes?

It’s okay to decline the invitation. For whatever reason, you might not

feel you can take it on. Maybe you just are not comfortable with the

person’s preferences. Or maybe you feel like you could not bring yourself

to make a decision that might shorten their life. Or maybe you are just

too overwhelmed to take on the responsibility.

If you are not comfortable saying yes, the best thing you can do is lovingly

say no. Be honest. Say “Thank you for asking me — I am honored.

I just do not think I can do a good job being your proxy.”

What if it is not possible to follow a person’s wishes?

One of the hardest situations is when a loved one has clearly stated a

wish, but it isn’t a feasible option — medically, nancially, or because

of limited family support. Perhaps the most common example of this

is when a loved one has expressed a clear wish to die at home, but it’s

not a feasible option.

There are no easy answers. But one thing you can do is nd out

what matters most to the person about “home” — and then do your

best to come as close as possible. That might mean bringing in family

pictures. Or a favorite piece of clothing or a favorite blanket. Or playing

favorite music. Or having a visit from the family dog or cat. Or a taste

of favorite food.



For more guidance on how to be a good proxy, see Making

Medical Decisions for Someone Else: A How-To Guide — at

https://www.americanbar.org/content/dam/aba/

administrative/law_aging/2011_aging_bk_proxy_guide_gen.pdf

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Make sure you understand your legal responsibilities

as a proxy.

As a health care proxy, you have the legal power to make medical

decisions for the person if they are no longer able to make decisions for

themselves. As a proxy, you will talk with your person’s doctors, consult

their medical records, and make decisions about tests, procedures,

and other treatment. The proxy is entitled to full access to medical

information under federal privacy laws (commonly known as HIPAA).

Make sure you understand your person’s wishes and choices.

It is important that you really understand your person’s wishes and

choices regarding end-of-life care. It’s a good idea to go through the

Conversation Starter Kit with your person, talking over their answers

to the questions in the Kit and their preferences on the “Where I Stand”

scales. And it is a good idea to talk over the person’s advance directive.

Having these conversations before a medical crisis, when there is time

to talk things through, will give you a strong foundation for making

decisions when the time comes.

Be comfortable speaking up.

Even if your person’s doctor or nurse is in a hurry, it’s okay to ask

questions. You could say:

“I’d like to speak with you about my mother’s wishes.”

“I don’t understand what you just said.”

“I have some questions I’d like to ask you. When would be a good

time for you?”

You might want to write down your questions beforehand, just to make

sure you don’t forget anything.

In all these cases, the “North Star” for any decision

is always the same:

What would your person (your mother,

your husband, your best friend) want?

A checklist for being a good proxy:

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Cut out card, fold, and laminate for safe keeping.



The original signed document is located at:

My Health Care Proxy is:

Name

Address

City, State, Zip

Phone

NOTICE TO HEALTH CARE PROVIDER

I have a health care proxy.

INFORMATION ABOUT ME

Name

Address

City, State, Zip

Phone

Signature

www.theconversationproject.org

VISIT US

theconversationproject.org

E-MAIL US

conversationproject

@ihi.org

AND TWITTER

@convoproject

TheConversationProject

This resource is made available through the generosity

of the Gordon and Betty Moore Foundation.

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