In the restaurant of the care center “de Hullen” in Roden, Drenthe, volunteers come and go to give all visitors a good spot. The hall is reserved for an Alzheimer’s café. There’s coffee, tea, and cinnamon cookies – “You must try, it’s really good!” – from the local bakery. Tonight’s topic is about end-of-life and what needs to be arranged to ensure that things go as you wish. “Seventy percent of all seniors would like to die at home,” says Rika Roffelsen, coordinator at the Dementia Network Drenthe. “But very often people don’t die at home because they haven’t arranged anything.”
Roffelsen (56), along with former general practitioner and emeritus professor of general practice medicine Betty Meyboom-de Jong (83), are guests at the Alzheimer’s café. Both are discussing death tonight. The starring role is resplendently taken by the incredibly fit octogenarian. She wrote “Uitburgeren” last year, a booklet about ‘what everyone can know and arrange concerning end-of-life.’ “Now that I have stopped working, I find it meaningful to educate the public, particularly the older public, about end-of-life. I consider this topic relevant because it’s still taboo.”
Empathetic and Persistent
The Drenthe project leaders for the “Preparation for the Final Phase of Life” couldn’t have wished for a better figurehead. Meyboom-de Jong leaves no topic untouched. She is not only very practical, but also empathetic and persistent. “If you’ve signed a Do-Not-Resuscitate order, make sure your neighbours and your loved ones also know that you don’t want to be resuscitated. Otherwise, they will call 112 if something goes wrong. While you do not want to be taken to the hospital in an ambulance, but wish for a doctor who alleviates your pain and breathlessness at home.”
The Drenthe project “Preparation for the Final Phase of Life” is a collaboration between regional hospitals, general practitioners, nursing homes, community nursing, and welfare work. Together, they are trying to encourage the residents of Drenthe to take control of their final phase of life. This is achieved, among other things, by organizing meetings like tonight in Roden. But also by training healthcare professionals to have conversations with patients. This improves care for palliative and chronically ill patients and can prevent crisis situations and unnecessary hospitalizations.
In the hall of the care center “de Hullen”, there are some patients with dementia and mostly family members and loved ones of people with this disease. In total, there are about 40 interested parties. Ali Poppe and Anna Jonkman-Heslinga both have a husband with dementia. Poppe calls herself an expert by experience. “My two sisters also have Alzheimer’s, and now one of my brothers-in-law as well.” Poppe has arranged with the notary what should happen to her house if she dies. Nothing more. “I could write everything down, but I have no one to help me. I have no children, and no nieces or nephews.” Just minutes earlier, Meyboom-de Jong mentioned the possibility of a mentor in her story. Poppe wants nothing to do with that. “What would I do with a stranger? I would prefer someone I know.”
Anna Jonkman-Heslinga thinks she has her affairs in order. “I don’t want to go to a nursing home. My husband has been there for a year and a half now and fortunately, he comes home every weekend, but I would never want that for myself. I just want euthanasia if I can’t take care of myself anymore.” Jonkman-Heslinga says she has a living will and that her children know which drawer she keeps it in. When I ask if she has discussed her wish with her general practitioner, she looks startled. “No, do I have to?”
Former general practitioner and emeritus professor Meyboom-de Jong is not surprised by such ignorance. “Conversations about the end of life are often avoided. Both by the patient and by the doctor. Often, therefore, general practitioners do not exactly know what a patient wants and when they become ill, they unhappily end up in a nursing home or in an apartment.” Meyboom-de Jong emphasizes in her lecture how important it is for people to consider what they want in the final phase of life. “Are all treatments still desirable when you have a weak health? Do you want to go to intensive care if you get sick from covid? What do you want and what do you not want? Do your loved ones know what you want and have you documented it?”
There are various brochures on the tables in the hall. For example, one asks if the reader is prepared for their final phase of life. A brochure with a simple living will. But also a booklet from the collaboration Networks Palliative Care, where there is space to write down, for example, where you want to die. What you were like as a child. What music you like and what your greatest sorrow in life has been. And, also very useful, containing various tips and possible questions you can use when you have a conversation with your general practitioner or specialist about how you envision your end of life.
Death is Taboo
A question comes from the audience about why people in Drenthe have so little documented about their end of life. And whether the residents of this northern province are different from the rest of the Netherlands. Roffelsen and Meyboom-de Jong look at each other and almost synchronously say that death is a difficult subject. A taboo, even. Roffelsen: “It’s not always easy to start the conversation with your loved ones. But I’ve seen so much suffering and misery because people didn’t arrange anything. People who were taken to the hospital in a screaming ambulance while they just wanted to die peacefully at home. Crisis situations because no one knew what a patient did or did not want… You can prevent that if you discuss what your wishes are. And if you find it difficult to discuss it with your partner or your children, at least do it with your general practitioner.”
“But how do you arrange that when someone has dementia,” comes a voice from the audience. Roffelsen admits that this can be a problem. Meyboom-de Jong is more positive. “As long as your husband or wife can still talk and tell what he or she does or does not want, you can still arrange a lot.” Passionately: “But always make sure you don’t delay these kinds of things for too long. Because especially with dementia, you need to closely monitor the disease process.”
In the hall, the numerous volunteers hand out snacks and drinks after the two presentations. People are chatting at various tables. Others want to go home as soon as possible. An older man who is barely standing with his walker doesn’t want to leave yet. His wife clearly does. “Now he still has energy. But if he chats for too long, he won’t make it to the car. And then I can pick him up.”
This story previously appeared in Relevant, the independent quarterly magazine of the NVVE.
Photo: Stijn Rademaker