Questions to ask a dying parent, while you still can.

Susan Block is one of the founders of palliative care as a medical specialty in the United States. She has spent her career teaching doctors how to talk with seriously ill patients about what matters to them. In Being Mortal (2014), the surgeon Atul Gawande describes what happened when she had to have that conversation with her own father. Jack Block, a retired psychology professor at Berkeley, had a mass growing in his spinal cord. The operation to remove it risked leaving him paralysed.

Before the surgery she asked him what he was willing to go through for a chance of staying alive. His answer was specific: if he could still eat chocolate ice cream and watch football on television, he was willing. During the operation the surgeons came out and gave her a few minutes to decide whether to go further, at a real risk of leaving him badly disabled. She asked whether he would still be able to eat ice cream and watch football. They said he would. She told them to go ahead. Because she had asked the question earlier, the decision was his, not hers.

Most of us are not palliative care doctors. When a parent is diagnosed with a terminal illness, the questions arrive at the worst possible time, when everyone is exhausted and anything that sounds like “before you die” feels like a betrayal of hope. This piece is about questions to ask a dying parent: what to ask, how to ask when they are tired, and why the evidence suggests that the conversation you fear will hurt them is usually one they want.

Do dying people want to talk about their lives?

The best evidence comes from a therapy designed by the Canadian psychiatrist Harvey Max Chochinov, working in Winnipeg in the early 2000s. In dignity therapy, a trained interviewer asks a patient near the end of life a short set of open questions about their life, what they are proud of, what they want their family to know and what they hope for them. The conversation is recorded, transcribed, edited and given back to the patient as a document to leave to the people they love.

In the first trial, published in the Journal of Clinical Oncology in 2005, 100 terminally ill patients in Canada and Australia went through the process. Ninety-one per cent said they were satisfied or highly satisfied with it. More than two-thirds said it had heightened their sense of meaning and purpose, and 81 per cent said it had already helped, or would help, their family. Two years later the same group surveyed 60 relatives of patients who had since died. Ninety-five per cent said it had helped the patient, and 78 per cent said the document had helped them in their own grief.

These were small studies without control groups, and a larger randomised trial published in 2011 did not find that dignity therapy measurably reduced distress in patients who were not especially distressed to begin with. The finding that has held up is simpler. Dying people value being asked about their lives, and their families value having the answers.

The reason is not hard to see. A person with a terminal illness is asked mostly about symptoms, and becomes, in every conversation, a patient. A question about the house they grew up in, or the year they met your mother, addresses them as a person with a whole life behind them. Cicely Saunders, who founded St Christopher’s Hospice in London in 1967 and with it the modern hospice movement, is widely credited with a line that sums up the principle: “You matter because you are you.”

“Jacob Blessing the Children of Joseph” by Rembrandt, 1656. Gemäldegalerie Alte Meister, Kassel. Public domain. The dying Jacob gathers his family to bless them.

What should you ask a dying parent?

The questions fall into four groups. They need not all be asked, or asked in order. (If your parent is still well and you would like a list on paper to start with, there is a one-page printable PDF of questions to ask your parents before they die.) The first group is the most urgent, because it shapes the time that is left.

About their care and their wishes

1. What do you understand about where things are with your illness?
2. What are you most worried about?
3. What would a good day look like for you now?
4. What would you not be willing to go through, even for more time?
5. If you could not speak for yourself, who would you want to make decisions, and what should they know?
6. Where would you most like to be at the end?

These are close to the questions Gawande describes palliative care specialists using. They are easier to ask than they look, because they are about preferences rather than death.

About their life

1. Tell me about the house you grew up in. Who lived there?
2. What were your parents like? What did you inherit from them?
3. How did you and Mum (or Dad) meet?
4. What was I like as a baby? What was that year like for you?
5. What was the hardest thing you ever got through, and how?
6. When did you feel most alive?

The last of these comes from Chochinov’s dignity therapy protocol, and it works because it asks for a scene rather than a summary. A story will answer questions you have not yet thought to ask, which is the theme of questions I wish I had asked my parents.

About what mattered

1. What are you proudest of?
2. What were the most important roles you played in your life?
3. What have you learnt about life that you would want your grandchildren to know?
4. What do you hope for each of us?
5. Is there anything you want me to know that I have never asked about?

About the things that need finding

1. Who are the people in the old photographs?
2. Where are the important papers, and is there anything in them we should understand?
3. How do you make the dish everyone associates with you?
4. Is there anyone you would like us to contact, now or later?

The physician Ira Byock, in The Four Things That Matter Most (2004), argues that most of what needs saying at the end of a relationship comes down to four phrases: please forgive me, I forgive you, thank you and I love you. These are not questions, and they cannot be scheduled. But a parent who has been asked about their life is far more likely to say them, and so is the child who asked.

How do you ask when they are tired?

Illness changes the practical rules of an interview more than any other circumstance. The general advice in how to interview older family members still applies, but several things matter more.

Keep sessions short. Ten or twenty minutes is often the limit, and one good answer is enough for a visit. Fatigue arrives suddenly in serious illness. Stop before they are exhausted, not after.

Ask the nurses when they are most alert. Many patients have a better part of the day, often after rest or after pain relief has taken effect. Plan around it.

Let them lead. If your father wants to talk about the cricket rather than his childhood, talk about the cricket. The ordinary is not a distraction from the conversation. It is part of it.

Use objects. A photograph, a wedding ring or a school report does much of the work of a question. Hand it over and ask, “Tell me about this.” Long-term memories tend to survive illness and medication better than recent ones.

Accept no for an answer, for now. Some parents do not want to talk. Ask once, gently, and leave the door open. Sometimes a direct question fails where an invitation succeeds: tell them a story you remember about them and let them correct you. Correcting a child’s version of events is one of the most reliable ways to get a parent talking.

Keep talking when they can no longer answer. In 2020 researchers at the University of British Columbia recorded the brain activity of hospice patients in Vancouver. In the handful recorded after they had become unresponsive, the brain still responded to sounds much as a healthy young person’s does. The study cannot show that they understood. It does support what hospice nurses have long advised: say what you want to say.

Why record the answers?

My grandmother has since passed away. I have four hours of her telling me about her life. The facts in those hours could be written down in a few pages. What cannot be written down is the way she told them: the pauses, the hands, the moment she decided whether to tell me the next part. A transcript of a parent’s last conversations is valuable. A video lets their grandchildren meet them. (On why the sound of a voice in particular matters after a death, see hearing a loved one’s voice after they have died.)

Recording a dying parent can feel intrusive, and it should never be done without asking. Framed honestly, as a way of keeping their words for the grandchildren, the request is usually received as what it is: evidence that someone wants to remember them properly. A phone propped against a water jug on the bedside table is enough. Hospital rooms are rarely quiet, so sit close and keep the phone near them rather than across the room. Do not worry about light or framing. The face and the voice are what matter.

The dignity therapy studies point to a second reason: the document mattered to families because it outlasted the person. A remembered conversation fades and changes. A recording does not. Apps such as Everyone are built for this, asking one question at a time so that a life is kept as a set of short videos rather than a single exhausting session, but a phone’s camera will do.

What the ice cream question teaches

Susan Block did not ask her father about chocolate ice cream because she expected it to matter in an operating theatre. She asked because she knew that a time would come when someone would need to know what he wanted, and that he might not be able to say. The question was valuable because it was asked early.

Every question in this piece works the same way. The moment you most need the answer is almost never the moment you can still get it. The answers about care help in the weeks ahead; the answers about a life help in the decades after. If your parent is dying, the most useful thing you can do, after making sure they are comfortable, is sit down beside them and ask.