Matters of life and death
Two months after qualifying as a general practitioner (GP) in the Netherlands, Rik Haarmans carried out euthanasia for the first time. His patient had colorectal cancer and had always said he wanted to die when he was no longer able to get out of bed. For the young doctor, it was a tough decision to make, with serious legal implications, because in 1983, when Haarmans was asked by his patient to end his life, physician-assisted dying was still illegal.
‘It was a covert operation,’ recalls Haarmans. ‘You went to the back door of the pharmacy to pick up the medication. The patient’s family couldn’t discuss the euthanasia with anyone.’
There were no guidelines in place to assist doctors carrying out euthanasia. ‘I was worried the first time that the dose wouldn’t be the right amount,’ Haarmans recalls. ‘When I was driving home afterwards, I thought the phone might ring and I’d be told the patient had woken up.’
Since 2002, the Termination of Life on Request and Assisted Suicide Act has laid down a strict set of criteria which the doctor must meet to avoid prosecution. The patient must have full mental capacity when making the request, and the suffering must be irremediable and unendurable. The law does not specify that the condition must be terminal.
Dutch GPs are receiving more and more euthanasia requests from patients with psychiatric conditions and dementia. Last year, euthanasia was carried out on 56 patients with a psychiatric condition, a 37-per-cent increase compared with 2014. Doctors helped 109 dementia patients end their lives in 2015.
The requests of non-terminal patients who wish to die are complex, according to Coen Gerretsen*, a GP in Rotterdam. ‘The suffering of a terminal cancer patient is visible. I have only ever carried out euthanasia on patients with a terminal illness.’ He currently has a patient with early onset dementia who wants to die when her condition progresses.
‘I find this extremely difficult,’ says Gerretsen. ‘Dementia is a dynamic process. I can understand that a patient asks for euthanasia when they are in the early stages of the illness and notice how forgetful they are becoming. However, I wonder if they actually suffer later on when their dementia has progressed.’
It is difficult to know if dementia patients are fully aware of their decision when the time comes. ‘I’ve heard about a dementia patient who became incredibly agitated when her GP was about to perform euthanasia,’ Gerretsen says. ‘She pushed the needle away and started shouting: “What are you doing?”’
The End of Life clinic
He has not ruled out carrying out her wishes, but feels he has the right as a doctor to draw the line. When the time comes he might refer his patient to the End of Life clinic (Levenseindekliniek) which specializes in euthanasia requests.
This clinic was founded in 2012 to help patients who want to die but whose GP is reluctant to help them. Haarmans has worked at the clinic since it opened and says it was set up to provide assistance and support to such hesitant GPs.
Around 600 doctors with specialist training, known as SCEN doctors, provide independent advice to GPs who receive euthanasia requests. They also try to raise awareness of the possibilities for euthanasia within the bounds of the law. ‘The Dutch law has never stated that euthanasia is only for terminal patients, but many GPs want to cling to this idea,’ says Haarmans.
For some GPs, euthanasia is a step too far, regardless of the circumstances. Johanna Priester, a GP in Rotterdam, has never carried out the procedure because it does not fit with her outlook on life. ‘Decline and death are part of life,’ she says. ‘Without death, regeneration and human development cannot happen.’
However, her personal objection to carrying out euthanasia does not prevent her from assisting patients who wish to die. When a patient with terminal cancer decided to go to the End of Life clinic, she continued to be his GP and had several discussions with doctors at the clinic about his medical history. ‘My patient wasn’t in much pain. He didn’t want his children and grandchildren to see him vulnerable and weak. It wasn’t in his nature to allow himself to be cared for.’
The clinic came under fire earlier this year after a documentary revealed that Hannie Goudriaan, a woman with advanced semantic dementia, had received euthanasia. Her catch phrase ‘Huppakee, weg!’ (‘Just like that, gone!’) was taken to mean ‘I wish to die’ by the doctor and her husband. The doctor’s decision to end her life was widely criticized.
Goudriaan had signed a declaration in 2010 stating that she did not want to carry on living if she no longer knew who she was. Her GP said he was unable to carry out the euthanasia because he was not convinced her limited vocabulary indicated that she wished to die. However, her doctor at the clinic said the patient had consistently made clear that she no longer wanted to live.
Dr Haarmans defends the euthanasia. ‘This case met all the necessary criteria. Our work is incredibly transparent and decent. The documentary did not reflect that.’
When is suffering too great?
One of the criteria of due care is that there are no other treatment options available to the patient. The revelation that a Dutch woman in her twenties was allowed euthanasia at the End of Life clinic in 2014 sparked outrage in Britain. The woman had been sexually abused from the age of five to fifteen and suffered from post-traumatic stress disorder, severe anorexia, chronic depression and hallucinations. Her psychiatrist said all treatment options had been tried and that the woman had no quality of life due to her extreme psychological distress.
The euthanasia review commission determined that the decision was taken in accordance with the criteria of due care.
‘As a doctor, you have to try to understand and empathize with the extreme suffering of a patient who longs to die’
Nikki Kenward, from the British disability rights group Distant Voices, condemned the decision: ‘It is both horrifying and worrying that mental-health professionals could regard euthanasia in any form as an answer to the complex and deep wounds that result from sexual abuse.’
Dr Haarmans argues that psychological suffering should not be considered any less painful and damaging than the suffering experienced by people with a physical illness. ‘Suffering is completely subjective,’ he says. ‘Two people with a similar condition and symptoms might think and feel very differently. As a doctor, you have to try to understand and empathize with the extreme suffering of a patient who longs to die.’
The role of the GP is to support and help their patients without judgement, says Haarmans. ‘If my patient’s most urgent wish is to pass away in a dignified manner, who am I to prevent that?’