Summary of results
More than half of the clients of counsellors working with foundation De Einder are over 65 years old. More than one third of the clients have no wish to end life and almost two thirds of the clients have not requested physician assistance in dying. Sixteen per cent of all clients wish to end life within three months.
In half of the cases others are involved in the counselling, often the partner and/or children. More than half of the clients receive explicit practical information on non-PAS, while only 13% of all clients have ended life through non-PAS – most often through an overdose of lethal medication.
There are differences in characteristics of clients without a (severe) disease and clients with a severe disease. The clients without a (severe) disease are older, more often have no wish to end life, request physician assistance in dying less often, have more problems of old age and existential suffering and more often want to be prepared for self-determination. Less often they have other persons involved in the counselling, more often receive explicit practical information and less often pass away within the registered period.
Strengths and shortcomings
The 100%-response rate of counsellors Foundation De Einder refers to, gives a reliable view on the client group. While in recent years more attention has been given to the existence of non-PAS [5, 9–14, 19–21], research into the assistance offered by non-physicians was unavailable. This research is the first to provide insight into counselling for non-PAS in a quantitative way and has been able to include a large group of clients (N = 595).
However, results cannot be generalized to non-PAS in general because deceased clients of counsellors working together with foundation De Einder only form a small group of all people that died through non-PAS. Secondly, other assisting non-physicians, like volunteers from other right-to-die organisations or relatives and friends, may have a different position and approach towards non-PAS than professional counsellors. Furthermore, information bias may have influenced the data. Information about the clients is collected through counsellors and the available information is dependent on what clients share with the counsellor.
Many clients do not have a death wish
Over one third (38%) of clients of counsellors working with De Einder have no wish to end life, while 16% of the clients have a wish to end life within three months. This raises the question what reasons these different groups of clients have for receiving counselling for non-PAS.
Looking for a peaceful death
The first reason for receiving counselling for non-PAS may be that especially clients with a severe disease are looking for a peaceful death for current suffering. Almost two thirds of these clients wish to end life within a year. Half of the clients with a severe disease have requested physician assistance in dying, which resulted in a denial in two thirds of the requests. A quarter of the clients with a severe disease have passed away, of which two thirds died by non-PAS.
It is plausible that some of these clients may have had difficulties receiving PAD. Research has shown that physicians are reluctant to offer PAD to patients with psychiatric problems or dementia . These disease are reported by counsellors to be more common with clients with a severe disease. Also moral objections of the physician have played a role in the denial of the requests. Finally, clients who believe they do not qualify for PAD and wish to stay autonomous may lead them to seek counselling rather than ask for PAD.
Since the opening of the End of Life Clinic in The Hague, the Netherlands – consisting of ambulatory teams that help people with a death wish, if they fall within the scope of the Dutch PAD law – patients have another possibility instead of asking their own physician. However, there will always be people falling outside the scope of the Dutch PAD law or who wish to stay autonomous. A foundation like De Einder provides in the possibility for these people to carefully deliberate on their wish to end life and prepare for non-PAS.
Looking for reassurance
A second reason for receiving counselling for non-PAS may be that people are looking for reassurance in anticipation of prospective suffering. These clients seem to be more clearly distinguished in the group of clients without a (severe) disease. Half of these clients have no wish to end life and a considerable number of these clients want to be prepared for self-determination and/or avoid dependence on others. While almost two thirds of the clients have been explicitly informed, for example on gathering the means for non-PAS, only 9% has ended life through non-PAS and almost one third put the counselling ‘on hold’ after having prepared a method of non-PAS.
The idea that people are looking for reassurance to prevent future suffering is probably reflected in the large amount of patients requesting physician assistance in dying for in due time (about 33,900 in 2010) as compared to the patients explicitly requesting physician assistance in dying for current situations (about 13,400 in 2010) . This reassurance to prevent future suffering can also explain why only a minority of patients, that are deemed eligible to receive assistance with dying from the Swiss right-to-die organisation Dignitas, actually make use of this assistance. They seem to regard this possibility as an ‘emergency exit’ option for when the deterioration of their health may become unbearable [22, 23]. This idea of reassurance by having an emergency exit option available, has also been reported in interviews with elderly people who are weary of life . The wish for reassurance can be related to the idea that death wishes serve as “a way of autonomous protection against the threat of continued living, feeling and thinking”. . The counselling and having the knowledge to be able to prepare or being prepared for non-PAS may give feelings of reassurance and the perception of control for these clients.
In recent years, non-PAS through voluntarily refusing food and fluid or taking lethal medication has gotten more attention in the Netherlands [5, 9–14, 19–21]. About half of the Dutch general public finds it acceptable if a professional assists by informing on non-PAS . The Royal Dutch Medical Association has explicated the role of the physician concerning non-PAS. When the patient decides to voluntarily refuse food and fluid, then the physician must have due regard for the care provided by a good care provider [21, 25]. When the patient opts for taking lethal medication, then the physician can hold conversations about the topic and provide information. The physician can, but is not obligated to, refer the patient to available resources and experts . As the data has shown, counsellors working together with Foundation De Einder have experience with people ending their lives through non-PAS with lethal medication. Therefore they could be a valuable source of information and knowledge and we recommend that physicians also consult them.
If non-PAS is to be distinguished from ‘mutilating’ suicide, then another approach than suicide prevention or crisis intervention is asked for by health care professionals. Berghmans et al. notices that “policy for the past years has mainly focussed on suicide prevention, as an act of justified paternalism that it is better (and morally obligatory) to save life than to respect the wish of the person. However, from an ethical point of view, it can be argued that preventing rational suicides by limiting the freedom and liberty of a competent person cannot be justified on paternalistic grounds” . In this line of thinking, we recommend to complement suicide-prevention with ‘suicide-attempt prevention’, a term coined by Minelli from the Swiss organisation Dignitas. Hereby people with death wishes can talk openly about the wish to die and where possible a sensible and attainable solution to their unbearable situation can be searched for. When this is not possible also non-PAS can be discussed. Minelli suggests this approach might be able to prevent lonely suicide attempts . While this is partly due to open communication about the death wish – a feature also shared with many suicide prevention organisations – another reason is the relief experienced by offering the possibility to an accompanied suicide by Dignitas. This approach seems to be in line with the work offered by counsellors working together with foundation De Einder. Respect for the autonomy of the person, the acceptance of the possibility of suicide and the provision of information on non-PAS are key features.
Evidence of the suggested effect that suicide attempt prevention prevents lonely suicide attempts cannot, however, be deducted from the available data. We recommend follow-up research into the results of the counselling, and interviewing clients and counsellors and others involved, to help answer these questions. The approach of suicide-attempt-prevention does, however, offer physicians a way to openly communicate about wishes to die with the patient. It is argued that discussing death wishes – even outside the context of PAD – are important because if people feel unable to talk about them, their quality of life may be further diminished . The Royal Dutch Medical Association recommends having a conversation on the subject of life’s end and death wishes as a way to get to know the patient better . Actually, we also recommend discussing non-PAS so to offer a chance to give the patient an improved perception of control, hopefully leading to a better level of coping and more quality of life.
Approval by Ethics Committee
This research has been granted an exemption from requiring ethics approval because the research does not require approval under the Dutch law on Medical-Scientific Research with Humans (Wet Medisch-Wetenschappelijk Onderzoek met Mensen; WMO). This approval has been granted by the VU Medical Center Medical Ethics Committee.
All data has been received anonymously through the board of Foundation De Einder and the counsellors the foundation refers to.