Feel the rain on your face one more time

Sailing in Giethoorn. A few hours to the Intratuin. Lunch with the family. To the Schiedam police station, because Mr (60) has worked there for years. To the Voorlinden museum, because Mrs (74) liked to come there so often. “Great in their smallness”, director Kees Veldboer (35) of the Ambulance Wish foundation calls the wishes he fishes out of the mailbox every day. “The closer to death, the more modest the needs become.”

Ambulances drive every day from the foundation’s premises, near an exit of the A15, to fulfill the last wishes of terminal patients. Most often, the beach is the desired destination, and not a sun-drenched paradise that requires crossing the ocean, no, just: Zandvoort, Bloemendaal. The second most desired destination of people who are in hospital or nursing home: their own living room. That will certainly also have to do with the fact that some people are too ill for anything strenuous, or because of their physical condition many people can’t or don’t want to face them. Moreover, the sicker someone gets, the more vulnerable they often feel, says Veldboer. “Usually these people seek safety, close to home.”

“But if you turn out to be terminally ill, you also touch a core of life that you have not touched before,” says Yolanda Sempel. She is 33, mother of six children, and she will die within the next ten years from the effects of metastatic lymphoma. „I did a full-time education, my husband studied in the evenings, we have six children and were constantly busy with ‘later’. I had to get my degree, get a good job as a social worker. And later we would also buy a bigger house, later we will get married, later we will make a big trip. Later, later, later.”

Christmas with grandchildren

That trip, Sempel still dreams of, to Bali. And also that grand wedding and that bigger house. But since she was diagnosed three years ago, it’s other things she really wants most. “I want to buy the first sanitary napkin with my daughters when they have their first period. And I want to have a water balloon fight with the street all summers to come. Before the diagnosis I might think: I’m tired, busy, a lot of work, next year again. I have managed to break out of the daily grind and enjoy every little thing that comes along on an ordinary day.”

“You almost always hear that from terminally ill patients,” says Yvonne Engels. She is professor of meaning in health care at Radboud University and was involved in the establishment of the Palliative Care Expertise Center. “Severely ill people get closer to what really matters, and closer to themselves.”

For qualitative research on communication in healthcare, Engels analyzed eighteen conversations between oncologists and their terminally ill patients, in which a person’s wishes were often also discussed. “Often it was all very small what they still wanted. There was one person who jumped out, a young man who wanted to take a trip to Australia. But with him you could hear doubt very clearly, in his voice and in what he said. You can ask yourself whether someone really wants something like this, or the environment. Most patients expressed hope – ‘I still want to be able to celebrate Christmas with my grandchildren’ – and at the same time their fears: ‘I’m afraid I won’t be able to keep my daughter’s wedding feast to the end’. Small, always so self-evident things become great because they are no longer self-evident. And that changes someone.”

It is also referred to in philosophy as an ‘epistemic transformative experience’: you learn something by going through something and could not have learned it without experiencing it. That experience makes you make different choices in the time that remains, and retroactively wish you had set different priorities. Bronnie Ware, an Australian palliative care nurse, recorded and wrote a book about the regrets of dozens of dying patients, The Top Five Regrets of the Dying (2019, published in Dutch under the title If I could live my life over). Most often she heard ‘I wish I had kept in touch with friends more’, and ‘I wish I hadn’t worked so hard’.

‘Cancer drink’

Ware heard few bucket list clichés, like bungee jumping or traveling the world. Just as the Ambulance Wish Foundation mainly receives modest wishes. Director Veldboer: “My peers and I, all in our thirties, sometimes ask each other what we still want before we die, and then we arrive with a trip to the other side of the world. See the Northern Lights. A blast with everyone we know. But I rarely hear such great things from dying people I speak to at work.”

Yolanda Sempel organized a modest party before every chemotherapy treatment started. “We always called it ‘the cancer drink’. Laugh together, cry together. With the people around you. That’s what it’s about. A long journey is beautiful, but your own home is the place where your memories are. Bungee jumping: very cool, but you jump on your own.”

soft pillow

Rob Bruntink recognizes this, founder of communication consultancy MORBidee, which aims to make it easier in society to talk about death. Bruntink wrote several books about mourning and dying and toured the Netherlands with the Before I Die Wall. On this three-by-two-meter chalkboard, people could write what they wanted to do before they died. “Then you see a lot of things that make you think: people in their terminal phase would never express that wish, and they probably wouldn’t regret not doing it on their deathbed either.” Such as: learning French. Controlling traffic at a busy intersection. “It’s about the love that is in an experience, the people with whom you go through the experience,” says Bruntink. “We, healthy people, can learn a lot from that.” He tells about the man who was in hospice and decided he wanted another tattoo. He had AIDS, and many tattooists did not dare to put a needle in his skin at the time – it was 2002. Nurses, friends, family did everything they could, and when finally someone was willing to do it, the sick man said: ‘It doesn’t have to be anymore. I found it so moving, all your efforts, so wonderful. That was what I needed.’

In the book Dying sucks but your coffee is good (2013) hospice employee Martine Wolfaert sums it up aptly: “Palliative care is rarely about pompous things. It is about the softest pillow. About one boiled potato when you can’t see any more mash. It’s about silence. About a son who kisses his mother after years.”

The fact that there may no longer be a ‘later’ suddenly makes everyday things that might have been ‘irritating’ in the past very special. The limited lifespan puts things in focus. Like the sick woman Bruntink heard about on a training day with nurses. She was in the oncology ward and wanted to feel the rain on her face one last time. So hop: outside, bed and all, while the clouds were emptying. “I don’t know anyone who has something like this in good health on their bucket list.”

“Your own mortality humbles you,” says Yolanda Sempel. “And of course I say to anyone who wants to climb the Himalayas: ‘Do it. Now.’ I do not wish anyone the diagnosis I received, but the gratitude I feel for every day. By dying, I have learned to live.”