Planning ahead: wishes, advance directives & legacy

Advance care planning isn’t just for people who are very old or sick. At any age, a medical crisis could leave someone unable to speak for themselves. Planning now means someone you trust will be ready to speak for you.

The National Cancer Institute says all adults should have advance directives, and that it’s best to complete them while you are healthy. Doing it early can ease the burden on you and your loved ones later.

Before thinking about any treatment, it helps to think about what makes life meaningful for you, what you fear, and what a good day looks like. Those answers guide every decision that follows.

Questions to sit with

• Is being at home important to me?
• What would I want my loved ones to know?
• What worries me most about being seriously ill?
• Who do I trust to speak for me?

You can change your advance directives at any time. Talking about your wishes should be ongoing, and when new documents are signed, the old ones should be destroyed.

It’s a good idea to review your plans at least once a year, and to update them after big life changes.

Planning ahead can feel heavy at first. But in a national survey, more than half of Americans said having the conversation about their wishes would bring a sense of relief.

A living will is a legal document that tells doctors how you want to be treated if you can’t make your own decisions. You can say which treatments you’d want, which you’d want to avoid, and in what situations.

Things a living will may cover

• CPR (restarting the heart or breathing)
• Machines that keep the body going, such as dialysis or a breathing machine (ventilator)
• Organ and tissue donation
• Tube feeding, and whether to withhold food and fluids

A durable power of attorney for health care, also called a medical power of attorney, names your health care proxy: someone who can make medical decisions for you if you can’t speak for yourself. This person may also be called an agent or surrogate.

Many people find this is the most important paper of all, because no document can predict every situation. See “Choosing someone to speak for you” for help picking the right person.

A POLST form is a portable medical order that records which treatments a person does or doesn’t want, so emergency and health care teams can follow them. It is meant for people who are seriously ill or who have advanced frailty, and it is optional.

A POLST starts with a talk between the person and their health care team. Some states use other names, such as MOLST, POST or MOST.

A DNR order tells the health care team not to use CPR if your heart stops or you stop breathing. It’s one of the choices people may record in their advance care plan.

A DNR is about CPR only. Talk with your clinical provider about what it would and wouldn’t mean for you.

Organ and tissue donation can be included in your advance directive. Telling your family and your health care proxy helps make sure your wishes are known.

A psychiatric (mental health) advance directive is a legal document that lets a person write down their treatment preferences ahead of time, in case a mental health crisis leaves them unable to decide. It can also name someone to make decisions for them.

It supports self-directed care and crisis planning. Laws differ by state, so ask your clinical provider or a local mental health organization how it works where you live.

A good proxy is someone who

• Knows you well and whom you trust
• Will follow your wishes, not their own
• Is willing to speak up for you, even when it is difficult

Without a health care proxy, state law decides who makes decisions, usually a spouse, parents or adult children. An unmarried partner could be left out unless they are named.

If you have a partner, chosen family or close friend you want involved, naming them in writing is the clearest way to protect that.

Once you’ve chosen someone, talk with them about your values and what matters most to you. Give them a copy of your papers, and let them know where the originals are kept.

Things to share with them

• Any faith or cultural practices that matter to you
• Situations you’d find hard to live with
• What a good day looks like for you
• Where your documents are kept

Being asked to speak for someone is a sign of deep trust. Ask them to tell you, in their own words, what matters most. Write it down. Ask the hard questions now, so you can feel more sure later.

Ways to start

• “I want to talk about something important while I can.”
• “Here’s what matters most to me if things get worse.”
• “What worries you most right now?”
• Start small: talk about what you appreciate and enjoy most about life

Talk with your clinical provider about your current health and the decisions you might face in the future. Review your documents with your doctor or another member of your care team before signing them.

Questions you could ask

• How might my health change over time?
• What choices might I need to make, and when?
• What would each choice mean for my daily life?
• Can you help me fill out my state’s forms?

The Conversation Project, run by the nonprofit Institute for Healthcare Improvement, offers a free Conversation Starter Guide to help people talk with loved ones about their wishes. It is available in English, Spanish, Portuguese and Chinese.

CaringInfo also offers free guides on advance directives, palliative care, hospice and caregiving.

Some loved ones may not be ready to talk, or may not agree with your choices. That’s why putting your wishes in writing and naming a proxy matters: it makes your voice clear, even if others feel differently.

Things that can help

• Ask a social worker, chaplain or care team member to help lead a family meeting
• Explain the “why” behind your wishes, not just the “what”
• Share a copy of your written wishes so there’s no guessing later
• Try again another time

Each state has its own laws about advance directives, and a form accepted in one state may not be accepted in another. CaringInfo offers free advance directive forms and instructions for each state and territory.

Most states require a witness when you sign. Rules about witnesses and notarization vary by state, so read your form’s instructions closely.

It can help to review the papers with your doctor or care team before signing, so you understand each choice.

Give copies to

• Close family members
• Your doctor and hospital
• Your health care proxy

Keep the originals somewhere safe and easy to reach, not locked away where no one can get them. Some people carry a wallet card that says where their documents are kept.

National Healthcare Decisions Day is held every year on April 16 to encourage people to talk about and plan for their care. It can be a handy yearly reminder to review your wishes.

Other good times to look again might be a birthday, a new diagnosis, or any big change in your life or family.

For people living with dementia, planning early lets them take part in decisions about their future while they can.

See the “Planning ahead with early dementia” guide for much more on this, and “Later stages & care decisions” for later on.

A psychiatric advance directive lets you set out your treatment preferences and name a decision-maker in case a crisis leaves you unable to decide. It can be part of a wider crisis plan.

The “Building your coping plan” guide can help you make a plan for hard days, too.

If you don’t name a proxy, state law usually picks a spouse, parent or adult child. An unmarried partner or chosen family member could be left out unless you name them.

People who are seriously ill or very frail may want a POLST form, which turns their wishes into medical orders that emergency teams can follow.

If you are living with cancer, the “Cancer & mental health” guide covers the feelings that can come with treatment and decisions.

Faith, culture and family traditions can shape what you want at the end of life, from who is present to rituals and prayers. You can write these wishes down and share them with your proxy and care team.

A chaplain or faith leader can help you think through choices in light of your beliefs.

Like dignity therapy, you can answer questions about your life and record them. Ask a family member to interview you, or record yourself on a phone.

Questions to answer

• What are the moments you’re most proud of?
• What did you learn about life that you want to pass on?
• What do you hope for the people you love?
• What would you like to be remembered for?

Dignity therapy is a short talk therapy for people living with a life-limiting illness. A trained person asks about your life, what you’re proud of and what you want loved ones to know, then gives you a written copy to share.

In a large trial, people said it was more helpful than other kinds of care, even though it didn’t lower distress overall. The “Serious illness & facing the end of life” guide has more on it.

Some people write letters for loved ones to open later: on a birthday, a graduation, a wedding, or simply “when you miss me.” Even a few lines can mean a great deal.

Memory books, family recipe collections, playlists of favorite songs, or handprints and fingerprints for grandchildren are all ways to leave something lasting. Sharing memories of good times can bring peace to everyone.

Ideas

• A family recipe book
• A family tree with stories about each person
• A photo album with stories written beside each picture
• A playlist of “our songs”
• Small gifts chosen for each loved one

A doctor, nurse or social worker can help you understand advance directives and answer questions. CaringInfo’s program can help too.

Many people find comfort in their faith community. Clergy and members can visit, pray, bring meals, and help with rides and errands.

National Healthcare Decisions Day, on April 16, is led by The Conversation Project. Hospitals, hospices and community groups often use it to help people start talking about their wishes.

Where to look

• Your local hospice or hospital
• Your place of worship or community center
• Your senior center or library

Some friends, couples or siblings fill out their papers together, then talk them over. Doing it side by side can make it feel less heavy, and it gets more people prepared.