Software developer Pieter Hintjens has been diagnosed with terminal cancer at the age of 53.
He will be opting to end his own suffering through euthanasia, which has been legal in Belgium since 2002. He has three children, aged twelve, nine and five.
In a final article on his website, he has outlined a protocol for dying, including these thoughts on how to have a conversation with someone you know is going to die.
It can be horribly awkward to talk to a dying person (let’s say “Bob”).
Here are the main things the other person (let’s say “Alice”) should NOT say to Bob:
- “Hang in there! You must have hope, you must fight!” It’s safe to assume that Bob is fighting as hard as possible. And if not, that’s entirely Bob’s choice.
- “This is so tragic, I’m so sad, please don’t die!”
- Death is not an opinion. Being angry or sad at facts is a waste of time.
- “You can beat this! You never know!” Which is Alice expressing her hope. False hope is not a medicine. A good chemotherapy drug, or a relaxing painkiller, that’s medicine.
- “There’s this alternative cure people are talking about,” Which gets the ban hammer from me, and happily I only got a few of those.
- “Read this chapter in the Bible, it’ll help you.” Which is both rude and offensive, as well as being clumsy and arrogant
- Engage in slow questioning. This is passive-predatory, asking Bob to respond over and over to small, silly things like “did I wake you?”
Above all, do not call and then cry on the phone.
If you feel weepy, cut the phone, wait ten minutes, then call back. Tears are fine, yet for Bob, the threat of self-pity looms darker than anything. I’ve learned to master my emotions yet most Bobs will be vulnerable.
Here are the things that Alice can talk about that will make Bob happy:
- Stories of old adventures they had together. Remember that time? Oh boy, yes I do… it was awesome!
- Clinical details. Bob, stuck in his bed, is probably obsessed by the rituals of care, the staff, the medicines, and above all, his disease
- Helping Bob with technical details. Sorting out a life is complex and needs many hands and minds.
Above all, express no emotions except happiness, and don’t give Bob new things to deal with.
It’s not all Alice’s work. Bob too has obligations under this protocol.
They are, at least:
- Be happy. This may sound trite yet it’s essential.
- Obviously, put your affairs in order.
- Remove all stress and cost that you can.
- I’ve asked people to come say goodbye before I die, not after. No funeral.
- Be realistic. Hope is not medicine, as I explained.
- Be honest and transparent with others. It takes time to grieve and it is far easier to process Bob’s death when you can talk about it with Bob.
There is no shame in dying, it is not a failure.
You can read Pieter Hintjens’ full thoughts on preparing for death in his final article: “A Protocol for dying”. He also participated in a lengthy discussion thread on the issues raised on Hacker News. This extract of his blog post was republished on theguardian.com with Pieter’s kind permission.