The man was 91 when he broke his hip. Although he also suffered from the lung disease COPD, he was confident that he would recover soon. That he would be home again a few weeks later.
But in the rehabilitation center in Hengelo he fell again. When he leaned out of his wheelchair and landed on the ground, the man broke his sternum. The ex-marine became so short of breath and was in so much pain that the situation became unbearable for him.
Quick euthanasia was not an option, because the GP with whom he had already discussed that process was on holiday. Waiting for her return, three weeks later, was no longer possible.
Nursing specialist Erik Dierink remembers clearly that he presented the man with another option. One that the patient himself had not thought of. “You could stop eating and drinking. Then you know that the end will probably happen within two weeks.”
‘Alternative’ to euthanasia
On Tuesday, an updated guide for healthcare providers was published that should provide clarity about this way of dying. People increasingly need control over their end of life, sees the KNMG medical federation. They do not always want to wait for death, but prefer to decide for themselves when it ends. They often think about euthanasia. They often do not know that dying by not drinking or eating anything is also an option. And healthcare providers are not always informed. In approximately 0.5 percent of deaths, the doctor deliberately lists stopping eating and drinking as the cause of death. By comparison: about 4.5 percent receive euthanasia.
Internal medicine oncologist Alexander de Graeff led the committee that drew up the guideline, and calls it “an alternative” for people who have a death wish but cannot or do not want to receive euthanasia. “Patients and caregivers sometimes have the idea that it is a gruesome, inhumane process. With this guide we show that it is a tough but usually passable road.”
The text outlines the framework for dying this way and explains how to properly care for these patients. How to soothe thirst. How you can assist relatives and what people can expect from such a process.
The first guide was published in 2014. Due to new research and advancing insight, it needed to be revised. In the new text, the age limit of sixty has been deleted. Until now, people under the age of sixty were “emphatically advised” not to stop eating and drinking. The thought was that it would be unfeasible, because hunger and thirst in young people can become unbearable. But since then, examples have been described of young people who nevertheless succeeded. It is possible, so that argument falls away.
In the new guide, the chapter on incapacitated patients with dementia has been significantly expanded. It is described in detail when this way of dying is an option for them.
The new guidance could represent a change: doctors who may have previously held young patients back no longer have to do so. And healthcare providers now have clear tools for people with dementia.
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Rogier van Deijck, a geriatric medicine specialist, has once assisted a relatively young patient (late forties) in such a process. He had physical complaints, but a diagnosis had never been made, so the euthanasia request was rejected. But everyone has the right to stop eating and drinking. “Now that the age limit has been removed, I feel more supported in such situations.”
Other countries do not have such a document, says Alexander de Graeff. Except for the United States, where a concise version of the Dutch guide was published last year.
Thirst stimulus
The 91-year-old ex-marine spoke about the method with nurse specialist Erik Dierink, and his loved ones also agreed. Dierink: “He mainly wondered what would happen if he got pain or thirsty. What if it became too heavy?” Dierink explained to him what practitioners can do to ease the pain and thirst, and also that they could put him to sleep if the pain could no longer be controlled in any other way.
For most people, the feeling of hunger disappears after a few days. This does not always apply to thirst. To relieve this complaint, it helps to moisten the mouth with a cotton swab, or the patient can suck on an ice cube wrapped in gauze. If nothing else helps, palliative sedation is sometimes an option. Then you reduce the patient’s consciousness. It is a complicated decision: anyone who sleeps no longer drinks anyway. And a doctor should not accelerate the process of dying.
Some patients become delirious, confused and may do strange things. They walk out of the room naked, or pee in a corner. Sometimes patients in that confused state cry for water. De Graeff remembers someone who went to drink the planters empty. Such behavior can be difficult and complicated for caregivers and loved ones.
Dierink drew up a statement with the 91-year-old ex-marine, which stated that they would not give him fluids or food in such a situation.
The majority of people die within two weeks. If patients are young or continue to drink, it takes longer. Geriatric medicine specialist Rogier van Deijck, who assisted the patient in his late forties, says that it took more than seven weeks before he died. “He still drank sips every now and then. That makes such a process more difficult for patients, loved ones and caregivers.”
It often happens that people reconsider their decision. For example because it is too heavy. There are also people who first try the method for a few days out of curiosity.
Suicide
There is discussion among health care providers about whether stopping eating and drinking is suicide. There is a group that believes not, because it is a slow process in which the patient abandons something, while suicide would be an active act. It is certain, the committee that drew up the guide concludes, that care for these people is not assisted suicide – that could be a criminal offence.
According to the authors, stopping eating and drinking is refusing treatment, just as you can refuse chemotherapy. It is the care provider’s task to guide these people as best as possible.
Rogier van Deijck sees that this reasoning is sometimes difficult to understand for outsiders. Especially if it concerns a psychiatric patient who is physically healthy. As long as someone is competent with regard to their death wish, they have the right to choose this, according to the authors. “Of course you have an extensive discussion and investigate whether there are other treatment options,” Van Deijck explains, but patients can also refuse those treatments. “I ultimately see it as my duty to care for people who are suffering.”
Alexander de Graeff remotely witnessed the death of a patient with an eating disorder. Her psychiatrist assisted her. “If someone is suffering without hope and has a death wish,” he considers this process “a better alternative than suicide.” This guide, says De Graeff, is a way to make that path open for discussion.
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Dementia
The dementia chapter has been the subject of most discussion. Sometimes patients have recorded their death wish at an early stage – when they were still competent. De Graeff: “But how do you deal with that if someone has dementia and then sits quietly eating and drinking?” Some committee members wanted to give much more weight to a previously drawn up declaration of intent. But the current text states that a patient’s behavior is leading. Nursing specialist Erik Dierink: “If someone asks for a meatball, you can’t refuse it, can you? I also presented it to my colleagues. They see it exactly that way. Otherwise you won’t be able to look at yourself anymore.”
The 91-year-old man died after six days. Dierink: “He has put together his own funeral card. Family comforted. And said goodbye very consciously.” On day five he became drowsy. “The body produces endorphins, the kidneys do not produce urine, the waste products accumulate in the blood.” The ex-marine died surrounded by his family.