Years ago, I didn't go to see my friend Mark when he was dying. I didn't know what to say, so I avoided saying anything. I have regretted it ever since.
I know I'm not alone: in my years of work with hundreds of people with cancer, I have learned that worrying about what to say puts many people off visiting their friends and loved ones at a time when they need them most. It's understandable. The usual social conventions seem redundant; putting your foot in it feels inevitable.
I wish someone had given me this advice. It won't make it easy, but it may help you to be there for the people you care about in the most difficult times.
- It is not about you. Your job is just to listen. If you are busy thinking about what to say, you're not listening.
- They may not want to discuss their sadness, pain or fears. If the person who is dying wants to talk about what it's like, they will, but they may never do so.
- Prepare to face your own questions and anxieties about dying. When I was ten, I went to visit my Uncle Will, who was dying of cancer. I remember how warm his hand was and how thin. He was not much more than a skeleton. I asked him, "Uncle Will, what's it like to be dying?" My mother kicked my leg and tried to shush me. But he calmly said, "It's like I'm on one side of the fence and you're all on the other. I can see you and talk to you all, but I am not with you." I thought about that fence for a long time afterwards. I could see it, and Uncle Will behind the fence, talking to us through it. He was right. He was no longer with us. As a child, I could get away with asking that question, and I'm glad I did. As an adult, you may have similar questions - but remember that the person won't necessarily have or be willing to share the answers.
- It is okay to feel awkward or uncomfortable. The person may be disfigured in some way; your job is not to see it. It might be difficult for them to talk and for you to understand them. This is not their fault, but it's not your fault either. There can be all kinds of aspects to visiting someone who is seriously ill which make it awkward. There may be odours; tubes of fluids going in or out of them; interruptions from medical staff. If you are uncomfortable, accept it, and do your best to ignore it.
- In some ways, it is about you. I believe dying itself is easy, if you're not in pain. It is saying goodbye that is the most difficult thing in the world. When you're with a person who is dying, you are anticipating a world in which they are no longer there. You are already grieving. You may need to seek support and comfort afterwards.
- Check: Are you wanted? Don't assume that a person who is dying is not content to be left alone. Ask, "Is it alright for me to sit with you for a while?", or "Is there anything I can do for you?" Offer your support, but don't insist. Accept it if they say no.
- Be real. A dying person has a highly tuned bullshit detector. Life, especially for them, is too short.
- "How are you?" is not a stupid question. An hour before she died, one of my patients, Jill, said to me "I've been through a rough patch, but I've turned the corner." A person who is dying also has their better days.
- Dying is a sad business. 'The sorry business' is what some Australian indigenous people call it. Say "I am sorry" if you're feeling it. Cry if you need to, but don't burden a dying person with your grief. If it all gets too much, don't hesitate to excuse yourself and take a moment in another room. Compose yourself and go back. But go back.
10. Always go back. No matter how hard it was, try to visit again while you still can. But ask. When you leave you might say "I'd like to come and see you again, would that be all right?" And they will tell you. They might say, "It's a little tiring for me." And you should feel OK about that. Because it's not about you.
And a final word, from a patient in the hospital I worked in. She told me after her cancer diagnosis, people in her village began crossing the street to avoid talking to her. I told her about Mark and how I didn't go to see him because I didn't know what to say, and I asked her, "What would you say to those people who crossed the street if you had the opportunity?" She looked me in the eye and said firmly: "It's still me in here! Talk to me, not my cancer."
Johannes Klabbers is a posthumanist therapist and the author of I Am Here: stories from a cancer ward, which explores how we can give comfort to people who are suffering or dying. He will tour the UK in November, speaking at Folkestone Book Festival and other venues.