As the topic of “dementia and self-determination” shows, we are participants in a culturally and historically significant process in which, after childhood, adulthood and old age, a fourth “generation” begins to emerge, a time in which people can no longer do what they could before and a time of dying begins, which can be of varying length and difficulty. In this phase of life, dementia and how to deal with it, as well as how others deal with those affected, will play a major role and the issue of human dignity will have to be revisited and answered in concrete terms.
One of the issues at play here will be that dementia, more than any other disease, could be considered a “family disease” and become one of the greatest challenges of an ageing society. The main socio-political question is how private the answers and solutions can and must be – among other things in relation to the patient’s previously expressed will, which cannot be obtained later.
We are not talking about symptoms of illness that can be objectively named and alleviated, but about fathers or mothers, people living alone or with a family, or at any rate socially concrete individuals falling back from their adult lives to the level of small and increasingly simple-minded children. A tremendous dynamic with mutual accusations, insults, longing for what has been lost and all the more torment and hurt. The case of Walter Jens makes this dramatically clear. In short: dementia is a disorientation symptom of the family, is perceived as such – if present – but is also related to society, which does not yet provide any ethically generally recognized and culturally “lived” rules for this.
When the threat of the shadowy realm and the nursing home looms, from which there is no return home, the “annihilation” of the person the sick person once was sets in – who would not understand the desire to escape this fate by dying, also in order to remain “as remembered” by family and posterity as one once was? (What’s more, people are also male or female. We don’t even know exactly how differently men or women are affected and how they deal with it).
Including dementia in living wills is nothing new. Professors Kielstein and Sass, the Humanist Association and others have already done this in the early 1990s in so-called value anamneses on the personal perception of life value and dignity. However, there are always trade-offs involved. The more stressful the planned measure is and the lower the associated healing success, the more binding it will be to implement a waiver of treatment.
A small, perhaps seemingly paradoxical example may show that it is not in the best interests of the person concerned for a living will to be implemented one-to-one: The living will states that the person concerned does not want to be artificially fed, but does want to be artificially supplied with fluids. In his current situation as a dementia patient, he refuses to drink any fluids, even though he could. So what is to be done?
In our experience, the will of the patient and a living will should be seen as a process in which many people are involved over the course of time. Relying solely on forms such as a ready-made dementia patient decree no longer seems up-to-date to me, as it completely disregards the individual views of the person concerned. In these cases, the question will have to be asked why life-prolonging treatments are only dispensed with in cases of severe dementia.
I would like to put this in a very personal but pointed way: If one day I can no longer recognize my relatives and am incapacitated, but can still manage Horst and Groschopp, will I be given a PEG tube even though I have refused artificial nutrition?
It seems to me that the time of once-signable samples is over. The new challenge is the quality of the process, from the consultation and amendment to the interpretation and implementation of a living will in dialog. There is enough work on this task for everyone.
