Hard times

Someone you love is dying and you don't know what to say

The treatment has stopped working, or there never was any, and the time is short. You want to say the right things, and you're terrified of making it worse.

What they need from you, and why

People who are dying usually know it, even when nobody has said so. In the late 1960s the psychiatrist Elisabeth Kübler-Ross interviewed dying patients in a Chicago hospital and found that many felt isolated because the people around them avoided the subject, were relieved when someone acknowledged the truth, and had things they wanted to say and do before they died. The silence around dying, she concluded, often adds to the loneliness of it.

What they need from you is not reassurance and not a plan. They need to be asked what matters to them, to be allowed to talk about their fears without being steered towards "fighting", and to be treated as the same whole person they were last month. The Illness & Health Challenges module names the common sources of suffering near the end of life: loss of control, being seen only as "the sick person", shifting family roles, questions about whether a life has mattered, and the plans they won't get to have.

Atul Gawande's Being Mortal makes the case that people facing serious illness have priorities beyond living longer, and that someone needs to ask what those are. The module describes Harvey Chochinov's dignity therapy, a short structured conversation about a life, its roles, what they want passed on and messages for the people they love; in a 2011 trial it didn't lower measured distress, but the people who had it were more likely to say it had helped them and would help their families. Joan Halifax's work with family carers adds the quieter skill: breathe, stay present, and let your body show that their fears don't frighten you away.

Understand it properly

First

Decide before you go in to follow their lead: they choose whether today is for talking about dying or about anything else.

You could say

I don't have answers to any of this. I can sit with it with you, though.
It's one of the module's own lines, and it meets the hardest questions honestly instead of papering over them.
What are you most afraid of about what's ahead?
A fear that can be said out loud is lighter than one kept quiet to spare you; it's the module's opening question.
What matters most to you now?
Gawande's point in one sentence: people facing the end have priorities beyond living longer, and someone has to ask.
Tell me about when you [opened the shop]. What are you proudest of?
Life review, roles and legacy are the heart of dignity therapy, and most people are glad to be asked.
Is there something you want to say to someone that feels hard to say? I could help.
Dying people often feel urgency about unfinished business, and you can be the one who makes it possible.
I'm here. I'm not going anywhere.
Long silences and staying put are what the module calls staying present, and they matter more than words.

If it goes badly

Three ways this can turn. Read the one that happens; the others can wait.

You've said something like

I don't have answers to any of this. I can sit with it with you, though.

If they don't want to talk about dying at all
Then we won't. What would you like to do with this afternoon?
Following their lead includes their silence; they decide the depth, and ordinary company is support.
If they say something that sounds strange, about a journey or about someone who has died
Tell me more about that.
Hospice nurses Maggie Callanan and Patricia Kelley describe dying people speaking in the language of travel, or of seeing people who have died; take it seriously rather than correcting it.
If they break down, or you do
It's okay. We can cry. I'm staying.
Tears don't need fixing, and your staying through them is the reassurance that matters.

Send them to yourself, or to someone helping you.

Try not to say

"Don't talk like that. You'll be fine."
It shuts the door they were opening; people who are dying usually know, and the silence adds to the loneliness.
"Everything happens for a reason."
It asks them to find your comfort inside their suffering.
Steering every conversation back to treatment and hope
Pressure to keep "fighting" leaves people alone with their fear and stops them saying what they want to.
Talking only about the illness, or about them as if they've already gone
Being seen only as "the sick person" is one of the sources of suffering the module names; ask about the garden, the grandchildren, the news.

Afterwards

Keep coming, and keep the visits ordinary as well as deep: the same person who wants to talk about dying on Tuesday may want the football on Thursday. If they said something they want passed on, write it down for them, or help them record it. Encourage them to raise their goals and worries with their medical team, because the trade-offs are theirs to make. Look after yourself and the others caring for them; carers are often overlooked and need their own support. Many bereaved people say that what stayed with them afterwards was having had the conversations, having been there, and having said what they needed to say. That is what you are doing now.

Understand it properly

The words above come from these. A section is about ten minutes; the whole module is there when you have longer.

Where this comes from

Deeper Dialogues, Illness & Health Challenges: what people with cancer found unhelpful (Dakof & Taylor, 1990), early reassurance (Maguire et al., 1996), and specific offers of help

We gather and pass on what researchers and support organisations have found. This isn't a replacement for a doctor, counsellor or support service.

What they need from you, and why

You could say

If it goes badly

Share these words

Try not to say

Afterwards

Understand it properly