The conversation about last wishes we all put off — and how to begin it

“When I’m gone, I’d like…”

“Mum, stop it. You’ve got years ahead of you.”

Sunday lunch, plates being cleared from the table, someone already looking for the car keys. A mother began a sentence she may have been carrying inside her for months. Her daughter cut it short, not out of coldness but out of love — out of a wish to protect her mother and herself from something that felt too heavy for a Sunday afternoon. The conversation closed. And because it had been closed once, the mother did not open it again.

The scene is a composite, but almost anyone who works with families while parents are growing old hears some version of it. The conversation about last wishes is one of those we all agree is important and almost all of us put off. In this post I will write about why we put it off, what happens when we never have it, and how to begin it so that it does not sound like a goodbye.

Why we put it off

There are several reasons, and it is rarely just one.

Magical thinking. Somewhere deep down, many people believe that death will come sooner if we mention it. Rationally we know this is not true, but the body reacts as if it were.

Protecting each other. Children do not talk so as not to frighten their parents. Parents do not talk so as not to burden their children. Back in the 1960s, while observing dying in hospitals, the American sociologists Barney Glaser and Anselm Strauss described a state they called mutual pretence: everyone knows the person is seriously ill, but everyone behaves as if they do not — in order to protect each other. The price is that each person is alone with their fear.

Family rules. In some families, feelings, money and death are simply not talked about. The rule is not written down anywhere, but everyone knows it. Whoever breaks it risks being seen by the others as rude or even cruel.

Procrastination itself. The conversation has no deadline. It always seems the right moment will come later — when Mum is feeling better, when the holidays are over, when my brother comes home. You can read about how procrastination works in the knowledge base under procrastination.

What research shows

The most common fear is that the conversation will take away a parent’s hope or crush them. Research does not bear this out.

In 2010, Karen Detering’s group in Australia published a study in which older hospital patients were randomly assigned to two groups. With one group, specially trained staff held a structured conversation about what they wanted at the end of life, and invited their relatives to take part too. The other group received usual care. Among those who died in the following months, wishes were known and respected for 86 per cent of patients in the first group and only 30 per cent in the second. What is more, the relatives of those who had had the conversation reported less stress, anxiety and depression after the death.

Two years earlier, Alexi Wright and colleagues found that among patients with advanced cancer, end-of-life conversations were not associated with more depression or worry in patients. They were, however, associated with fewer aggressive interventions in the last week of life, and in that study these interventions were linked to poorer quality of life for patients and to harder grieving for their loved ones.

Neither of these studies is about Sunday lunch in a Slovenian family. But they do speak to something that holds more widely: silence does not protect us the way we think. Often it only shifts the burden — from the person who is dying to those who remain and are left guessing.

What belongs in this conversation

When we hear “last wishes”, most of us think of a funeral or a will. Those are only two pieces. Some years ago the American doctors Rebecca Sudore and Terri Fried proposed that planning for end-of-life care should be understood less as filling in a form and more as preparation — for the fact that the patient and those close to them will one day be making decisions that cannot be foreseen today. And for that, knowing what matters to a person is more important than knowing which procedures they would refuse.

So it is not a single conversation. It is several shorter ones, sometimes months or years apart. And some happen in passing — over a film, when a neighbour dies, on a visit to an aunt in a care home.

Who in the family may begin

In relational family therapy we often look at who in the family carries which task. In the conversation about last wishes this is especially visible. There is usually one child who is “always the one to bring up difficult subjects”, and one who avoids them. The one who begins often risks being seen by the others as a pessimist, or even as someone waiting for an inheritance. The one who avoids it risks being left later with a conversation they never had.

Another common pattern is that siblings talk about a parent rather than with them. A sister rings her brother and says, “We have to do something, Mum ought to…”, but Mum takes no part in that conversation. In family therapy we call this triangulation: tension between two people is redirected to a third, who becomes the carrier of what the first two cannot say. In the short term it brings relief. In the long term it means that everyone decides about the parent except the parent.

What I notice is that it matters less who begins. What matters is that the one who begins is not left alone. If you know you will be the one, talk to your siblings first — not about what Mum should want, but about the fact that you are going to ask.

When a parent does start to talk

This is how a conversation that has opened might sound (a composite, not a real person):

“Dad, I sometimes wonder what you would want if you ever got very ill. And I don’t know.”
“Why this now? What did the doctor tell you?”
“Nothing. I’d just rather hear it from you than guess later.”
A long silence. “I wouldn’t want to be hooked up to tubes. Like your uncle Jože.”
“That was very hard for you to watch back then.”
“Yes. And I wouldn’t want you lot arguing about who decides what.”
“Who would you rather decided, if you couldn’t?”
“Your sister. You’re too soft.” He smiles. “You know that yourself.”

Several things happen at once in this short exchange. First the father checks whether there is bad news behind it — a common reaction, and one worth being ready for. Then he says something that is not a plan but a memory: the uncle he watched die. Wishes almost always grow out of stories like this. And finally he names the person who should speak for him — and in doing so, perhaps without meaning to, tells his son something about the roles each of the children has in the family.

The person who opens the conversation does not know in advance what they will hear. Perhaps something that will hurt. So it is good to have someone afterwards with whom you can talk about how it was for you.

Exercise: the first sentence

The hardest part is the beginning. This exercise helps you prepare it in advance. It takes fifteen minutes and you can do it today.

1. Write down why you want to know at all. One sentence, for yourself. “So that I won’t be guessing later.” “Because I’m afraid my brother and I will fall out.” Your reason is your first sentence in the background.
2. Choose a bridge. It is easier to begin with something that has happened: an acquaintance’s illness, a film, the fact that you have sorted something out for yourself. “When I was sorting out my own papers, I thought…”
3. Start with yourself, not with them. “I’d like to know what matters to you” is easier to hear than “We need to talk about what you’ll do when…”.
4. Ask just one question. For example: “What would be the worst thing for you if you ever became seriously ill?” Or: “Who would you want to decide, if you couldn’t?” Then listen.
5. Leave the door open. If your parent says “not now”, answer: “All right. I’d like to come back to it some time.” And do come back — in a few weeks.

If it does not work the first time, that is not failure. Often the first conversation is simply that the subject has been spoken aloud. The second comes once the parent has thought about it a little on their own.

When a parent does not want to talk

Some parents say “no” and mean it. That is their right. Not everyone wants to talk about their death in advance, and for some, silence is the way they stay whole. Pressure that goes beyond respect often only makes a parent close up further.

But you can ask something smaller. “If you don’t want to talk about it, would you at least tell me who you’d like to have with you?” Or: “Would you rather tell the doctor some of this than us?” For some people it is easier to talk to someone outside the family. That is not a rejection of you.

Asking in good time matters especially with illnesses in which the capacity to make decisions declines over time, such as dementia. There the door does not close all at once, but slowly — and a conversation that is still possible today may no longer be possible in a year. I have explained what palliative care is and why it makes sense to ask about it early in Palliative care: what it is, when the time comes and what it does to a family.

What is written down and what is not

The conversation often raises a question: is it enough that we know, or does it have to be written down somewhere? Slovenian law provides ways to express some treatment decisions formally in advance, and similar arrangements exist for a will and for who will decide for you if you cannot. The conditions and procedures are precisely defined and can change, so I will not describe them here. Where to ask:

• the family doctor — for everything concerning treatment and advance statements of wishes;
• the patients’ rights representative (zastopnik pacientovih pravic) — for questions about patients’ rights;
• the social work centre (center za socialno delo) — for questions about guardianship, care and help at home;
• a notary or lawyer — for a will and questions of property.

But even the most carefully completed document does not replace the conversation. A document says what; a conversation says why. And when a decision comes that nobody foresaw, it is that “why” that will help the family. I have written about how to talk about property in a family so that money does not become the language for everything else in Inheritance and children: how to talk about wealth in the family.

Where this conversation is not the answer

I would like to be honest about its limits.

Wishes change. What someone wants at seventy and in good health is not necessarily what they will want at eighty and ill. The conversation is not a contract. It is something you return to.

It will not prevent all pain. Even families who have talked about everything grieve when death comes, sometimes argue, and later doubt whether they did the right thing. I have written about how guilt can arrive even when you did everything you could in Guilt after loss: “I could have done more”.

Some wishes cannot be fulfilled. A parent may wish to die at home, but the conditions for it are not there. Respecting wishes does not mean you must fulfil them at any cost, including the cost of your own health. It means taking them seriously and talking openly about what is not possible.

The conversation is not a solution to an old conflict. If resentments have been smouldering in the family for years, the conversation about last wishes will not be the place where they are resolved — sometimes it even fans them. Then it makes sense to have someone with you who belongs to neither side.

And one more thing: a conversation like this can stir your own thoughts about transience — including your own. That is natural. If you would like to reflect on it more broadly, see the knowledge base under transience.

The mother at the start of this post may have wanted to say something quite simple: which song she would like to hear, or who should have her bracelet. We will never know. So the next time someone begins a sentence with “When I’m gone…”, it is worth letting them finish it. I have written about what remains when something is not said in time in When a parent dies: what is left unfinished, and about the loss itself in The death of a parent in adulthood: a loss others underestimate.

What to remember

• We put off the conversation about last wishes out of fear, to protect each other and because of unwritten family rules — but silence only shifts the burden onto those who remain.
• Research shows that such a conversation does not crush patients, and that it eases grief for relatives after the death.
• It is not just about the funeral and the will: first ask what matters to the person.
• Talk with your parent, not just about them — and do not leave the one who begins on their own.
• For formal steps, ask the family doctor, the patients’ rights representative, the social work centre or a notary.