How to Start Conversations About Advance Care Planning

The endgame of ACP is for your wishes to be honored by your loved ones and your healthcare providers. The best way to get there is to talk, become known, and share.

You always have a choice about the healthcare you receive. You must consent to medical procedures, and you have the right to understand your treatment options and possible outcomes. What happens if an accident or illness leaves you unable to exercise your right to choose?

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Advance care planning (ACP) is the process of making decisions ahead of time about the medical care you would like to receive if you become incapacitated and unable to speak for yourself. Planning in advance for your care considers your values and preferences and highlights the need to designate someone you trust to represent your best interests if you can’t.

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The endgame of ACP is for your wishes to be honored by your loved ones and your healthcare providers. The best way to get there is to talk, become known, and share.

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Why Advance Care Planning Is Important

Advance care planning is empowering! You and your loved ones learn more about healthcare options and have an opportunity to think through what quality of life means to you. Making medical decisions for someone else can be stressful. ACP helps alleviate that burden for your loved ones.

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The Importance of Completing Advance Directives:

Helps to ensure your wishes for care are honored
Makes your wishes official
Guides healthcare providers
Alleviates the burden of decision-making for your loved ones
Allows you to make informed choices
Supports your right to have a say in your care
Increases the odds that you get the care you prefer at end-of-life

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What Are Advance Care Planning Documents?

ACP documents include legal, written Advance Directives. Completing an Advance Directive provides your loved ones and healthcare providers a roadmap of how you would like things to unfold if you cannot guide them in the moment.

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Common ACP Documents Include:

Healthcare Power of Attorney. Also called Medical Durable Power of Attorney (MDPOA), healthcare agent, representative, surrogate, or proxy. A legal document naming someone you trust to make medical decisions on your behalf when you cannot do so. ANYONE OVER AGE 18 SHOULD NAME A HEALTHCARE POWER OF ATTORNEY IN CASE OF AN ACCIDENT OR SUDDEN ILLNESS.

Living Will. A written document guides doctors in how you want to be treated if you are dying or permanently unconscious and cannot make your own decisions about life-sustaining or emergency treatment. IT GOES INTO EFFECT 48 HOURS AFTER TWO DOCTORS CERTIFY YOUR CONDITION.

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DNR/DNAR (Do Not Resuscitate/Do Not Attempt Resuscitation) and CPR (Cardiopulmonary Resuscitation) Directive. This form serves as a doctor’s order which alerts hospital or emergency medical personnel of your wishes regarding measures to restore your heartbeat or breathing. DNR/DNAR forms are valid for inpatient hospital care, and CPR Directives are valid outside the hospital.

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MOLST/POLST (Medical Orders for Life-Sustaining Treatment/Physician Orders for Life-Sustaining Treatment). A medical order signed by your doctor guides your care preferences, including CPR, the general scope of treatment, antibiotics, and artificial hydration and nutrition. PRIMARILY INTENDED FOR USE BY CHRONICALLY OR SERIOUSLY ILL PATIENTS.

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Organ and Tissue Donation. With your prior consent, your organs or body parts may be eligible for transplant to people who need them after you die. You may carry a donation card with you, indicate your decision to be an organ donor on your driver’s license (in some states), or include organ donation in your ACP documents.

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Why Should We Talk about ACP with Loved Ones?

Every conversation you have with your loved ones about ACP is an opportunity for you to make your values and preferences clear.

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Picture this: you are in the hospital and unable to speak for yourself due to an accident or illness. Your doctors and loved ones are sitting around a table trying to determine what treatment (if any) is in your best interest. Your doctor asks, “What would (insert your name here) want?” Your loved ones will have a good idea of what to say if you have clarified your goals, values, and preferences about treatment outcomes and quality of life. Everyone around that table wants to honor your wishes. They need to know what is most important to you.

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You will not be able to talk through every possible healthcare scenario ahead of time, but you CAN talk about your goals and what quality of life means to you. For example, you may want to live as long as possible and believe you can adapt to life in a wheelchair, nursing home, or a lower level of functioning. Or, you may consider death a preferable alternative to aggressive medical care and possible reliance on tube feedings or kidney dialysis.

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ACP is an opportunity for you to consider your mortality. ACP isn’t just for end-of-life – it’s for any season of infirmity you may move through from now until the end. You and your loved ones need to know what you believe about death and dying and the quality of life.

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Talking with your loved ones about ACP can also help you determine who you would like to name as your healthcare representative. Who is comfortable having conversations with you about ACP? Who will advocate for you?

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Prepare for the Conversation

Research: Understand what kinds of documents are important for your state. Many states have their own advance directive forms. Some states require your forms to be witnessed and/or notarized, and some have registries to store your advance directives. Visit the Medicare website or check with your local Area Agency on Aging to help you find the right forms and requirements for your state. If you spend time in more than one state, completing forms for each state is a good idea. You can keep all of your documents together in paper form or through an online platform.

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Who to talk to: Federal law requires that you be given information on advance directives any time you are admitted to a healthcare facility that receives funds from Medicare. You have probably been asked about your advance directives if you have accessed healthcare for yourself. The best people to talk to about the content of your advance directives are your healthcare providers, like your doctor or hospice staff. Most healthcare facilities and estate attorneys have advance directives forms for you. There are also online resources available through national organizations, like The Conversation Project and The National Institute on Aging. You do not have to use an attorney for advance directives. Whether you talk through your ACP with your healthcare providers or not, it is important to share your preferences and directives.

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Be honest with yourself. What is difficult to consider about your future healthcare needs or your inability to speak for yourself? Do you have particular concerns about finances or caring for loved ones that need to be discussed? Many people want to talk about these things but don’t know how to bring them up. Can you embrace the idea of planning for the future now while you are in better health rather than waiting until you are infirmed?

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Make a list of what matters most to you. You can name goals like “I want to be comfortable,” “I want to make sure my loved ones are taken care of,” or “I don’t want to be kept alive on machines.” For more specific ideas, use The Conversation Project Workbook “A Patient's Guide to Serious Illness Conversations.”

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Figure out when and where you want to have the first conversation. Write down a few things you want to say based on talks with your healthcare providers and your honest appraisal of what is most important to you.

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How to Start ACP Conversations with Loved Ones.

Whether you are initiating a conversation about your wishes for care or wanting to know about your loved ones’ wishes, keep the following in mind:

One-on-one is usually best, in a comfortable, private place
Use “I” statements and ask permission to talk first. Introduce the topic before you have the conversation.
Keep an open mind. Your loved one may think and talk about ACP differently than you do.
Have low expectations about how much you may accomplish with the first talk.
No matter the outcome, you are opening a door!

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To start talking about your wishes for medical care with your loved ones, try:

“I’ve been thinking about my future healthcare decisions, and there are some things I want you to know. Can we talk about what is most important to me?

“I’ve been thinking about what happened to (insert name of someone you both know who died or had a recent health crisis), and I realized something for myself. Can we talk so I can share my concerns with you?”

“I’m okay now, but I’m worried about (insert your concern). I want to be prepared, and I may need your help. Can we talk?”

“I’m learning about the importance of naming someone who can speak for me if I cannot speak for myself about medical decisions. Can we talk about whether you could be that person for me?”

To start talking with a loved one about their wishes, try:

“I want to make sure I understand what is important to you if you need medical care and cannot speak for yourself. Can we talk?”

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If your loved one doesn’t like to talk about their future healthcare, “If I need to put myself in your shoes and make decisions for you, I want to make sure I honor your wishes. Given what I know about you, here is what I think you would want….” Use a few of the Conversation Project “Where I Stand Scales” and see if your answers match what your loved one wants.

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Make notes about any conversations you have so that if you are sitting around a table with the healthcare team someday, you can share what your loved one said.

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KEY POINTS:

ACP is an evolving process that doesn’t typically happen in one conversation. But the first conversation opens the door to a banquet room full of opportunities to engage in meaningful, helpful conversations with those you love.
You and your loved ones need time to reflect on medical information and options that may impact future care. It’s OK to take it in small bites and digest it before the next serving.
Keep the ball rolling, have more than one conversation, and remember to share your decisions with all of your care providers.
Not everyone wants to talk about the possibility of being unable to make decisions for themselves. And some people don’t want to be a spokesperson for a loved one. Ask your healthcare providers for help.
Start ACP conversations ahead of time when you are healthier and not in crisis.
Some people aren’t comfortable putting specific healthcare decisions in writing. Naming a healthcare power of attorney who knows your values and preferences is a good first step.

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People have personal priorities and spiritual beliefs that affect their medical decisions. ACP conversations can lead to a deeper understanding between you and your loved ones and be an opportunity to become more fully known.

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Talking about ACP is a low-risk, potentially high-yield endeavor. Part of the beauty of ACP is that you can always change your mind as you adapt to your circumstances and review your wishes. Think about starting a conversation with your loved ones about what matters most. Fear of the unknown and unspoken could transform into a sense of relief for all parties.

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