Death according to personal preference and in a manner that resonates with the person’s individuality is increasingly considered as an important element of ‘a good death’ in modern Western culture. Consequently, an increasing number of countries legalizes euthanasia. Although there are more countries where euthanasia also can be provided to persons with dementia (PWDs), only in the Netherlands an advance euthanasia directive (AED) can replace a verbal request for euthanasia in a later stage of dementia, if all other obligatory criteria are met. [2, 3]
BOX1. The requirements of due care in Dutch law as stipulated in the Article 2 of The Termination of Life on Request and Assisted Suicide Act. .
The physician must:
a. Be satisfied that the patient’s request is voluntary and well considered.
b. Be satisfied that the patient’s suffering is unbearable, with no prospect of improvement.
c. Have informed the patient about his situation and his prognosis.
d. Have come to the conclusion, together with the patient, that there is no reasonable alternative in the patient’s situation.
e. Have consulted at least one other, independent physician, who must see the patient and give a written opinion on whether the due care criteria set out in (a) to (d) have been fulfilled.
f. Have exercised due medical care and attention in terminating the patient’s life or assisting in his suicide.
The Act stipulates in section 2.2 that a patient aged 16 or over who is decisional competent may draw up an advance directive, setting out a request for euthanasia. If at some point the patient is no longer capable of expressing his will, the physician may accept the advance directive as a request pursuant to section 2 (1)(a) of the Act.1 2 The advance directive thus has the same status as an oral request for euthanasia.
Initially, like in other countries, the large majority of euthanasia requests and acts concerned terminal patients with cancer. However, during the last decade, the Dutch number of euthanasia cases in persons with dementia (PWDs) has increased from 25 (of 3136 cases in total) in 2010 to 162 cases (of 6361 in total) in 2019. Indeed, Dutch society, influenced by the growing media and political attention, considers dementia as a debilitating and degrading disease and by many as synonymous with unbearable suffering.[6-8] As most PWDs, especially in the early stages of the disease, live at their own home, particularly GPs are confronted with euthanasia requests of PWDs; a growing number of people in the Netherlands discuss and share an AED with their GP.
Recent studies showed that dealing with AEDs, euthanasia requests and procedures are a burden for GPs; they experience pressure from relatives, have problems with judging mental capacity of PWDs, and the Dutch society’s stigmatization of dementia.[11-13]6 Not having the same expectations as and disagreeing with relatives about AEDs, (un)willingness to perform and the timing of euthanasia contributes to this burden.[14-16] (Re)discovering the right balance between the physician’s professional responsibility and the patient’s and relatives’ autonomy in such cases has been recommended.
Until 2015, the Royal Dutch Medical Association (KNMG) directed that, on medical-ethical grounds, it was necessary that the patient verbally or non-verbally confirmed his or her actual death wish when receiving euthanasia, regardless of having an AED. In 2015, the KNMG published its latest guideline, following more liberal possibilities than given by law, in which this was not required as stipulates in section 2.2 (Box 1). This can be considered a baseline shift, responding to the society expectations to provide maximum juridical space for PWDs.
Recently, a Dutch euthanasia case concerning a woman with advanced dementia was tested against criminal law, to acquire jurisprudence and thereby seeking formal ground for this legal option, which even increased GPs’ concerns around euthanasia in PWDs. The Supreme Court in The Hague determined that the woman with advanced dementia in question who was given euthanasia based on her AED without actual confirmation of her request, legally and professionally received sound care in line with the amendment of the law. The case, in which the physician had been accused of murder, was dismissed.[19, 20]
Although this case concerned an elderly care physician working in a nursing home, this first ever euthanasia court case was seen as threatening in primary care across the Netherlands, as GPs typically are confronted with euthanasia requests and AEDs, and carry out 85% of all euthanasia procedures. Clearly there are professional and legal challenges and ethical concerns GPs face when dealing with euthanasia requests and AEDs from PWDs. We therefore aimed to answer the following research questions: What are the views of Dutch GPs on the obligatory euthanasia criterion of unbearable suffering in PWADs, and on a case vignette about a euthanasia request regarding such a patient with an AED?