How to Talk to Your Family About End-of-Life Wishes: What to Say First

What happens when a family never talks about end-of-life wishes?

Ellen Goodman wrote for a living. She won a Pulitzer Prize in 1980 for her newspaper columns. She and her mother talked about everything except one thing: how her mother wanted to live at the end of her life.

Once or twice, they heard about a relative or friend in a coma or on a feeding tube. Her mother would say, "If I'm like that, pull the plug." That was all.

In her last years, her mother could no longer decide what she wanted for dinner. So the medical decisions fell to Goodman. Another bone marrow biopsy? A spinal tap? Antibiotics? Pain treatment? She wrote later:

"But, of course, when the time came there was no plug." — Ellen Goodman, co-founder of The Conversation Project

Her mother's one sentence was like a map with no street names. It showed a direction. It did not show the way. Only after her mother died did Goodman see "how much easier it would have all been if I heard her voice in my ear."

Her family is not unusual. In The Conversation Project's 2018 national survey, 92% of Americans said talking about end-of-life wishes is important. Only 32% had done it.

And the need is real. One US study looked at 3,746 adults aged 60 or older who had died. 42.5% needed medical decisions near the end, and 70% of those could not make the decisions themselves.

When no one knows your wishes, families can argue. In the Nancy Cruzan case, her parents had to take their case all the way to the US Supreme Court. You may get treatments you would not want. And the people you love may ask for years: "Did we choose right?"

So ask yourself: if you could not speak tomorrow, whose voice would be in your family's ear?

Is one talk enough, or do I also need to write it down?

Talking is the start. It is not the finish.

A review of 16 studies tested how well family members could guess a patient's treatment choices. They were right only 68% of the time, about two times in three. Being chosen by the patient did not make them more accurate. Talking about treatment choices beforehand did not either.

This does not mean talking is useless. It means a talk works best with three other things:

• Values, not only treatments. Nobody can predict every medical event. But if your family knows what matters most to you, they can work out the rest.
• Paper. An advance directive is a letter to the doctors who will meet you on a day you cannot speak. It tells them who you are and what you want. See our guide to advance directives and living wills.
• One named person. A healthcare proxy is the person you choose to make medical decisions for you. Think of them as your translator. When you cannot speak, they speak your language to the doctors. See how to choose a healthcare proxy.

When all of this comes together, it works. An Australian trial followed 309 hospital patients aged 80 or older. Half were offered help to think about their values, name a decision-maker and write down their wishes. Among patients who died, wishes were known and followed for 86% in the planning group, but only 30% in the usual-care group. Their relatives also had less stress, anxiety and depression afterwards.

Yet few people get this far. A review of US studies published from 2011 to 2016 found only about 37% of adults had any advance directive. Healthy adults (33%) were only a little less likely to have one than people with long-term illness (38%).

When is the right time to bring it up?

The right time is before you need it. Talk when everyone is healthy and calm. The Conversation Project says this talk belongs at the kitchen table, not in the intensive care unit.

Good moments include:

• After a life event: a birthday, an anniversary, or a funeral.
• During routine planning: when you update a will or an insurance policy.
• When the family is together: but not on a big holiday, when feelings already run high.
• On 16 April: this is National Healthcare Decisions Day in the US.

That date was chosen on purpose. US taxes are due on 15 April. The idea is simple: do your taxes on the 15th, review your care wishes on the 16th. It comes from a line Benjamin Franklin wrote in a 1789 letter, repeating an older saying:

"in this world nothing can be said to be certain, except death and taxes" — Benjamin Franklin, letter to Jean-Baptiste Le Roy, 13 November 1789

We plan for taxes every year. We rarely plan for the other certain thing. Planning does not bring death closer. It takes away some of the fear and confusion for the people you love.

What can I say to start the conversation?

You only need one honest sentence. Here are some to try:

• "I've been thinking about the future. I want to make sure you know my wishes."
• "I read an article about advance directives. I realised we've never talked about this."
• "I want to make things easier for you if something ever happens to me."
• "Can we talk about something important? It won't take long."

You can also start from a real event: a friend's illness, a film, or a news story. "If that were me, I would want…" is a gentle way in.

If you are the adult child, ask for help instead of giving advice: "I need your help. If you got very sick, I would not know what you want. Can you tell me?"

The Conversation Project has a free Conversation Starter Guide in English, Spanish, Portuguese and Chinese. Its "What Matters to Me" workbook comes in the same four languages.

What should we actually talk about?

Start with values. Treatments come second.

The surgeon and writer Atul Gawande tells a story about a colleague's father. A tumour was slowly taking away the use of his arms and legs. When asked what would make life still worth living, he gave a simple answer. As Gawande told it in a 2014 radio interview: "if I can watch football on television and eat chocolate ice cream, that's gonna be good enough for me."

Gawande's own father had a similar tumour. He gave the opposite answer. He was a very social man. He needed to talk with people and to keep making a difference in their lives. Two men, the same kind of illness, two very different ideas of "good enough". No doctor could know this without asking.

In the same interview, Gawande lists the questions he learned to ask. You can ask them of yourself first:

1. What is your understanding of your health right now?
2. What fears and worries do you have for the future?
3. What goals do you have if your health gets worse?
4. What trade-offs are you willing to make, and not willing to make?

Then talk about the specific choices:

• Life-sustaining treatments: CPR (pressing on the chest to restart the heart), breathing machines (ventilators), and feeding tubes. When would you want them? When would you not?
• Pain relief: some people want full comfort, even if it makes them sleepy. Others want to stay as alert as possible.
• Place of care: hospital, hospice, or home. Our guide to palliative care explains the options.
• Religious or spiritual needs: rituals, prayers, or visits from a priest, imam or other leader.
• Who decides: the one person who will speak for you, and a backup.

What is your "chocolate ice cream"? Think about that question before you talk to anyone else.

How do I keep the conversation going well?

• Listen as much as you talk. Ask about their wishes too. Many people feel relief when someone else goes first.
• Expect more than one talk. One conversation will not cover everything. That is normal.
• Write down what you decide. Even a short email to the family stops misunderstandings later.
• Bring in your doctor. Doctors can explain what treatments really involve. In the US, Medicare has paid for these talks since 2016. The talk is always voluntary. If it happens at your Annual Wellness Visit, with the same provider on the same day, Medicare waives your deductible and coinsurance.
• Come back to it. Wishes change after a new diagnosis, a divorce, or a death in the family. Review them once a year. 16 April is an easy date to remember.

What if my family does not want to talk?

Some families go quiet. Some change the subject. Some say, "Don't be so negative."

This is usually love, not rejection. For them, talking about your death can feel like losing you early.

• Respect their pace, but come back to it. Say, "That's OK. Can we talk about this next month?" Then do.
• Give them something to read alone. Some people need time to think before they can speak. A short guide or your own notes can help.
• Talk to one person at a time. A group can make everyone defensive. A quiet talk with one person often goes better.
• Ask a neutral person to help. A doctor, nurse, counsellor or faith leader can guide the talk.
• Act anyway. You do not need their permission to fill in your forms. Do it, then tell them where the papers are.

Ask yourself: who in your family would find this talk easiest? Start with them.

How do I make my wishes official?

The rules depend on where you live. Our page on patient rights and planning compares the main documents.

United States. Each state has its own forms. CaringInfo offers free advance directive forms and instructions for every state. States have different rules for witnesses and notaries, so read the instructions carefully. Most forms let you name a healthcare proxy and write your treatment wishes. Our living will guide goes step by step.

England and Wales. You can make a Lasting Power of Attorney for health and welfare. It names the people who can decide for you. Registering it costs £92, unless you get a reduction or exemption. It takes 8 to 10 weeks if there are no mistakes.

You can also make an advance decision to refuse treatment under the Mental Capacity Act. To refuse life-sustaining treatment, it must be written down and signed by you and a witness. It must also clearly say that it applies even if your life is at risk. Scotland and Northern Ireland have their own systems.

Malaysia. A 2019 legal review found no law and no court decision on advance directives in Malaysia. We could not find a law passed since then. But Malaysian Medical Council guidance accepts that an adult with full mental capacity may refuse treatment. It recommends that the patient writes down, signs and dates the refusal. So write your wishes down and give a copy to your doctor and family.

Wherever you live, give copies to your proxy, your family and your doctor. A form in a locked drawer cannot help anyone.

What is one small step I can take this week?

You do not need to finish today. You only need to start. The free end-of-life readiness check shows which talks and papers to start with.

Ellen Goodman's mother gave her one sentence. You can give your family much more: your values, a named person, and a few pages they can hold.

This week, choose one person. Choose one opening line from this page. Say it, and then listen.

Planning for the end of life is not about fear. It is a gift you give the people you love while you still can.

If this topic brings up heavy feelings, you do not have to carry them alone. You can talk to someone today.