The Plug is a physically implanted Advance Euthanasia Directive for the condition of dementia (Alzheimer’s disease, Vascular dementia, Parkinson’s disease, Huntington’s Disease, Pick’s Disease, or Creutzfeldt-Jakob Disease). An Advance Directive is a tool used in planning for end-of-life, usually in the form of a document by which a person makes provisions for health care decisions in the event that, in the future, he/she becomes unable to make those decisions. Advance euthanasia directives in dementia are rarely complied with even though patient suffering was judged to be extreme (Rurup et al., 2005).
Here at The Plug we believe that, if a cognitively sound person has made a well considered, rational decision to desire euthanasia under certain circumstances, we must respect this wish. We do however also understand that this can be a completely unreasonable request to a physician having to perform the euthanasia. This is why we have come up with The Plug. The Plug is an implanted robot that can perform your commands in the future, once you yourself are incapable of making these decisions. The Plug alleviates the burden on physicians having to deal with these ethically complicated issues.
Below is summary of a systematic literature review considering Advance Euthanasia Directives for Dementia. Please make sure you inform yourself completely before making this life changing decision.
Summary of Literature about Advance Directives (2017):
Various papers approach advance directives as a tool for adequate advance care planning in dementia. Burlá et al (2014) suggest that the living will can be presented to the patient in the early days of their care, as soon as the diagnosis is accomplished. They also recommend that the appointment of a health care proxy should be done when the person is still in full enjoyment of his cognitive ability, and that the existence and scope of advance directives should be conveyed to any patient in the early stages of the disease (Burlá et al., 2014); Flew (1999) proposes a specific advance euthanasia directive that should be adhered to, even in advanced dementia (Flew, 1999)
Most don’t see it quite so black and white, and different nuances and approaches have been investigated. In a survey to gain insight into how advance directives for euthanasia affect resident care in Dutch nursing homes it was concluded that these advance directives for euthanasia are never adhered to in the Netherlands in the case of people with advanced dementia, and their role in advance care planning and end-of-life care of people with advanced dementia is limited. One of the physicians in the study pointed out, advance directives for euthanasia may raise false expectations among those who compose them and, in addition, perhaps place too much responsibility on elderly care physicians and relatives (De Boer, Dröes, Jonker, Eefsting, & Hertogh, 2011).
Hertogh (2009) investigates why euthanasia in dementia does not occur, even with an advance euthanasia directive and an adjustment to Dutch law making this explicitly possible. He cites two main reasons for why advance directives are not adhered to, the first being that the anticipated suffering expresses itself differently, and second the lack of a shared understanding between patient and physician. Hertogh does suggest a function for advance directives, namely to be able to assist dialogue between physician and patient before competence is lost. Hertogh also notes that advance directives place a heavy burden of responsibility on the healthcare proxies (C M P M Hertogh, 2009).
The worry of the strain that advance directives put on physicians and health care proxies is also expressed in another paper by Hertogh et al (2007). Essentially an advance directive is the formerly competent person asking her proxies to ignore her demented self. Is this a fair question to ask your loved ones? (Cees M P M Hertogh, de Boer, Dröes, & Eefsting, 2007)
The way people adjust to suffering, a “responsive shift”, is sometimes argued to be the reason that dementia patients contradict earlier preferences, rendering advance directives meaningless. Jongsma et al (2016) claim that this can’t be the case; a response shift is a change in the person’s self-evaluation of their quality of life. Dementia patients lack the ability to self-evaluate, this lack of self-evaluation results in complexities in measuring quality of life or even having an opinion on it. The authors conclude that therefore advance directives can’t simply be put aside, though they admit that they can’t blindly be adhered to either (Jongsma, Sprangers, & van de Vathorst, 2016).
The difficulty to assess a dementia patient’s wishes or their suffering was found in several more research initiatives. This lack of conclusive assessment made it hard for physicians to adhere to advance directives (Kouwenhoven et al., 2015); (Rurup et al., 2005).
Gastmans & de Lepeleire (2010) conclude the same problem with advance euthanasia directives in dementia. According to them, in an ethical evaluation of euthanasia we must observe dignity of the human person, relational autonomy, quality of life and care. They introduce “relational autonomy”: “Persons with dementia are situated, among other things, within a familial, cultural, and historical context. The growth of demented persons is to a large extent based on a balance between autonomy and solidarity, not just on individual self-determination”, this description gives more control to the people in the social context of the person with dementia (Gastmans & De Lepeleire, 2010).
A major obstacle in advance planning and dementia is the personality change that is inherent in dementia: “The core of the argument revolves around the undeniable change in personality, and arguably even identity, between the competent person who executed the directive and the incompetent person who will be affected by it” (Davis, 2014).
Menzel and Steinbock (2013) propose a new type of advance euthanasia directive for dementia patients. Their paper discusses the complexities with dementia, cognitive competence, suffering, and potential adjustment to loss of abilities, personality change and identity. They describe identity in reference to Dworkins’ “critical interests”; these can be described as life values and go beyond “experiential interests” which only exist in the here and the now. Life values extend into family, possessions and legacy. The critical interests shape a person and describe the kind of person they are and want to be – these are the interests that should be able to be protected in an advance directive. This causes a dilemma: if the experiential interests of the person with dementia are not violated once dementia takes hold, but conflicts with their critical interests, what action should follow from there? The authors propose a sliding scale solution, where autonomy is weighed against capacity of enjoyment, on a case by case assessment. Advance directives, it is claimed, are there to give people control over their lives once they themselves are no longer capable. “The way they die is an important reflection on the way they lived” and should be taken into consideration (Menzel & Steinbock, 2013).