It seemed to be about something very fundamental: an 83-year-old woman was not allowed to buy cigarettes by her administrator and her son disagreed. But after a visit to Hilda’s nursing home and the summary proceedings that the man filed, this case turns out to be remarkable for other reasons: “The media are loving this,” says a medical ethicist.
“I am surprised by the large number of people and press,” the judge opens the hearing this afternoon in the small room in Alkmaar. “In essence, this is a family matter with an incapacitated woman and they are normally handled behind closed doors.”
At the front left, wearing a blue suit, sits the administrator Jasper Poll of Finaid BV, the papers in front of him on the table. On the other hand, the man who takes him before this judge: Jurjen Sietsema, the son of 83-year-old Hilda.
It’s all about her cigarettes and yet she’s not there. Six kilometers away as the crow flies, Hilda is in Bergen, in a closed ward in a nursing home. She has no idea that this ‘conflict’ exists at all, because she suffers from Alzheimer’s. We visited her a few hours before the hearing.
‘Anti-smoking wake’
“Hey, celebrity,” a healthcare worker calls to Sietsema. She is sitting at the table in Oudtburgh’s meeting room and he is just coming through the door. He wears a black hat and colorful shoes.
By ‘famous Dutchman’ she refers to the full-page interview in De Telegraaf this morning. Included photos of Sietsema and his smoking mother. The head: Hilda (83) has to quit smoking after 70 years: “Crazy anti-smoking woke“.
His very elderly mother lives in a kind of prison here in Bergen, Sietsema believes. ‘A waiting house for death’, for which she ‘pays 900 euros per month’. And since September, her administrator and mentor have no longer given her cigarettes.
“Come on mom, put on your coat, we’re going to be on television tonight”
“She has asked you for butts too,” he asks another nurse at the table. He nods in agreement. “I’ve been working here for a month and a half now and she has come to me three times for a cigarette.”
According to her son, 83-year-old Hilda has been smoking for about seventy years. “Her whole life. I don’t smoke anymore, but I now buy them for her. I just think it’s expensive. She has the money for it and it makes her happy.”
But his mother also has dementia. Her Alzheimer’s is in an advanced stage. At the beginning of this year, she was therefore placed by legal authorization in the closed department, with walls in pastel colors, where it is nice and warm this morning before Christmas Eve.
The woman in question is standing on her walker in the living room. Hilda waits for Sinterklaas with the other elderly people. When she sees Sietsema, a big smile appears on her face. The smile she also shows when she is allowed to smoke a cigarette, her son claims.
He bends towards mother. “Hey honey, can I give you a kiss?” We are allowed to see her room for a brief moment, but then his phone vibrates. He approached journalists himself last week and now the Hart van Nederland camera crew is at the gate of the home. No time for the good saint. “Come on, mom. Put on your coat. We’re going to be on television tonight.”
With a stressed communications employee from Oudtburgh behind them, mother and son shuffle towards the reporter for the television program, who are standing just outside the site, ‘on the public road’. The son is not authorized to simply take his mother with him.
And so he complains again into the microphone held over the fence. “Smoking is a human right. Just give my mother a cigarette.” He offers her a cigarette and lights it. Hilda smiles again.
“We want to guarantee her quality of life. Smoking made her sicker.”
What the story does not tell so far is that Sietsema has only been reunited with his mother since the beginning of this year. They did not see or speak to each other for years. The woman had no social safety net anyway. And because Hilda also had debts, she was appointed an administrator fourteen years ago.
That man, Jasper Poll, is now also her mentor. So he is about her financial affairs, but also about healthcare. Just before the hearing in Alkmaar, he told NH that he was shocked that there were ‘camera crews at the institution’, that this case had been ‘blown up in the media’ and that there were untruths in articles.
In the small room he then explains why he has not given Hilda cigarettes since last September. “Precisely to guarantee her quality of life. Smoking made her sicker and she developed many complaints. This was indicated by the head nurse and doctor.”
She is said to have problems with bowel movements and appetite due to smoking. The night care also had to turn her over during the night. “She didn’t like being woken up at all,” Poll said.
Since she has largely stopped smoking, she is doing better, the administrator says. “Her skin condition is good, she has no pain when lying down, eating is going well. She coughs less and has more strength.”
Although Hilda’s caregivers think it is a shame that her son now gives her cigarettes during his many visits, it is not his intention to ban anything. “There are agreements in place to ‘distract’ her if she tends to ask for one. And what I hear is that she actually doesn’t even ask for it anymore and forgets that she smokes.”
‘Difficult to say what people with dementia want’
The judge hears it all and does not actually want to make a ruling, but wants the parties to sit down together without him. Sietsema and Poll agree and leave the courtroom for half an hour.
A good suggestion from the judge, according to medical ethicist Alistair Niemeijer, who has studied the case for NH. This is not so much about a legal conflict, but more about the disturbed relationship between the son and the care institution and administrator.
“I often see that people who are dissatisfied with healthcare immediately start a kind of battle of pens and also exert pressure”
“It is very difficult to say about people with dementia what they really want. So I find it especially tragic that the son has not seen his mother for so long and she has changed so much, she is in need of care and someone else now makes decisions about her and he is suspicious about it.”
In his work he sometimes experiences tragic conflicts between families and healthcare institutions. And to prevent that, he thinks people should keep talking to each other. “We find it increasingly difficult to listen to each other in this society. And we prefer to look for confirmation in our own bubble.”
According to him, it is therefore typical of this time that Sietsema has approached the media about this. “I find that curious. And I often see that people who are dissatisfied with healthcare immediately enter into a kind of war of pens. And thus also exert pressure, because a healthcare organization is terrified of bad publicity.”
He sees that the media in turn enjoy it and do not necessarily handle it responsibly. “There is a stir going on. There is no question of ‘anti-smoking woke’, ‘patronising’ or ‘we are not allowed to do anything anymore’. It is much more nuanced. This case shows that anything can be said and done here and this son also has legal resources to use.”
After half an hour, son Sietsema and administrator Poll return to the room. “To keep it simple and not to inflate too much: we will make an arrangement,” said the administrator. “We will ensure that cigarettes are available again at the care location, but we do not actively offer this.”
Not on a talk show
Son Sietsema may also declare receipts for any purchased cigarettes to the administrator. “We keep a close eye on it. Sometimes four go in at the same time. We will also monitor and assess whether her health is deteriorating.”
The judge nods satisfied. He does, however, give son Sietsema some advice about approaching journalists: “Your mother is incapacitated. Be careful with that.”
In a few weeks, the arrangement will be evaluated in a meeting with the doctor, nurses, administrator and son Sietsema. Afterwards he speaks to the press with a smile. In the meantime, he had a message from an editor of talk show Op1. “I won’t go there anymore, out of respect for the mentor.”