Job Metsemakers and Rob Houtepen Job Metsemakers and Rob Houtepen Sacha Ruland

“A doctor is not just a vet with a syringe”

In Society
Written by  Hans van Vinkeveen Wednesday, 30 October 2013 09:42
According to the Royal Dutch Medical Association (KNMG), people with dementia should only be euthanised if they are able to give informed consent when the time comes – even if they have aliving will. “Doctors struggle these days with euthanasia requests that are not about physical but psychological suffering”, says Job Metsemakers, professor of General Practice Medicine. “They want more clarity.” This is understandable, says the medical ethics lecturerRob Houtepen: “It’s important that the considerations involved in the end of life are laid down in legal criteria, but there must remain room for interpretation.”
The two have not yet made arrangements for themselves. “I don’t think I’m old enough yet; I’ll start thinking about it only when I’m over 70”, says Houtepen. “And I certainly wouldn’t rule euthanasia out.” It’s early days for Metsemakers too. “But if I were to become a vegetable, the people close to me know I’d want nature to run its course rather than to be kept alive at all costs. Which is different to a well-considered choice to end one’s life.” And in the case of dementia? “That’s a different story altogether”, they say in unison. Metsemakers: “I wouldn’t know what to do about that. Where does the border lie between liveable and not? What constitutes a decent existence? You can’t answer such questions now."
In the Netherlands, euthanasia is lawful in the case of dementia. There must be a living will; that is, an updated declaration of the patient’s wishes should he or she no longer be able to give informed consent. In addition, a number of legal requirements must be met. For instance, the doctor must assess whether a euthanasia request has been made voluntarily and with due consideration. The problem is that, in the case of patients unable to give informed consent, this is often impossible. According to the KNMG, this is why the law should include an extra requirement: there has to be a minimum level of communication. If this is not the case, people who are unable to give informed consent – even if they have a living will – may not be euthanised.

Demented end of life

Doesn’t all this leave people with severe dementia out in the cold? There can still be a certain threshold, says Houtepen, who is also a member of a euthanasia review committee. Doctors should not be burdened with expectations about ending the lives of dementia patients who have not carefully considered what the procedure means for the doctor. “The KNMG rightly emphasises how stressful and often inconceivable it is for doctors to give lethal injections to patients who don’t know exactly what’s happening and are unable to confirm what their wishes are. In view of this human threshold, it’s not strange to ask those who so fear the suffering their dementia will cause to spend some lucid moments carefully considering and consulting with their doctor about how they wish to die. You ought to take into account what you’re asking of the doctor; after all, a doctor is not just a vet with a syringe.”
Metsemakers, who also works as a GP, would be enormously uncomfortable euthanising a patient on the basis of a living will only. “I’d wonder about its status. How independently was it written? Was it drawn up on a good or a bad day? You have to be sure to weigh up all the considerations well in advance with the patient and the family. Then at least you have a back story.” Early on, Metsemakers would also consult a SCEN doctor, whose job is to provide advice on euthanasia requests. “Ultimately, I’d perform the euthanasia – but I wouldn’t find it easy.”

Slippery slope

According to Houtepen, the strict standpoint of the KNMG may lead doctors to push euthanasia decisions along too quickly. “If euthanasia is impossible in the case of late dementia, this has an impact on the early stage”, he explains. “Imagine that an early-stage dementia patient comes to the doctor with a living will, for when he’s no longer lucid later. ‘Will you do the procedure then, doctor?’ This places the doctor in a position where he’s forced to say: ‘Not if you’re unable to give informed consent. So make sure you don’t miss your chance.’ This can be seen as pressuring the patient: better euthanasia soon rather than an uncertain future. It puts the doctor in an almost impossible position.”
As Metsemakers sees it, this was not the KNMG’s intended objective. “The euthanasia law was more broadly formulated than doctors initially perceived. They thought it was designed for somatic patients with a terminal illness. Now the discussion is shifting to patients who say their cognitive faculties are fading or they’ve simply had enough of life. Doctors are struggling with this shift; they’re reluctant, and wonder how this fits in with the law. No one wants to go back to the early phase of the euthanasia legislation, when the prosecutor would drop by for a visit.” Still, he wonders what lies in the future for doctors. “Is this a slippery slope?”

Suicide law

But doctors can also be restrained, according to Houtepen. “Particularly when it comes to advanced dementia, most doctors have a basic attitude of: is euthanasia really necessary?” Doctors should bring up the topic early instead of waiting until there’s an immediate need. “If an early-stage dementia patient says he absolutely does not want to go to a nursing home, the doctor should ask: ‘Do you mean you may also want euthanasia?’” Metsemakers agrees that doctors do not take the lead in this as often as they should. He emphasises, however, that in the case of dementia euthanasia is a complex, nuanced matter, depending on the process and the timing of the request.
Incidentally, neither is in favour of euthanasia outside the doctor–patient relationship. As an example, Houtepen mentions the citizens’ initiative Uit vrije wil (‘Out of free will’), which aims to make it easier for older people to gain access to assistance in ending their lives. “They want to free the citizen from the paternalistic yoke of the doctor. But then you’re heading in the direction of suicide law. Who’s responsible then? I’m in favour of doctors playing a key role.” Metsemakers: “You do have to ensure that doctors are involved in the discussions on these sorts of topics and find it safe to go along with certain developments.” “Which doesn’t work if the considerations surrounding the end of life are laid down in strict criteria with no room for interpretation”, Houtepen concludes. “Then you create circumstances in which patients lose faith that doctors are on their side. And without that faith, you won’t get far.”

Rob Houtepen
Rob Houtepen (1957) is a medical ethics lecturer at the Maastricht University Faculty of Health, Medicine and Life Sciences. His PhD focused on the status of elderly people in society. Houtepen is a member of a review committee for euthanasia cases, is involved with the website and writes about the imagery and perceptions of psychological disorders.
Job Metsemakers
Job Metsemakers (1952) has been professor of General Practice Medicine at Maastricht University since 2002. His PhD explored the use of medical reporting data in scientific research, medical education and quality assurance. He directs the medical programme and has also worked as a GP in Geulle since 1982.

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