The FGs had between 5 and 9 participants, with 82 participants (29 male and 53 female) in total, 23 in the US, 29 in Germany, and 30 in Israel. Participants were between 20 and over 90 years old. Their educational backgrounds differed, but the self-recruitment led to a slightly higher proportion of persons with an academic education.
A central topic of concern throughout all group discussions in all three countries was the meaning, scope, and limits of individual autonomy in EOL decision making. At the same time, however, autonomy was interpreted in different ways and different arguments were brought forward in favour of or against autonomous decision making in the different FGs, depending on varying situational aspects and socio-cultural contexts. The subsequent sections explore these similarities and differences with regard to ADs, termination of life-sustaining treatment and euthanasia, as well as the role of the state in EOL.
A) Advance directives and planning EOL decisions
Participants in the German and the US FGs showed a rather strong tendency to emphasize the relevance of individual autonomy in EOL decision making, especially regarding the validity and binding character of ADs. In the corresponding discussions, different intellectual traditions of conceptualizing autonomy seemed to come into play. Thus, in line with a Kantian understanding of autonomy, a person’s will as put down in an AD was often considered as strictly “sacrosanct” (M-rel US), her right to self-determination as a matter of fundamental human dignity. At the same time, however, autonomous decisions did not necessarily have to be rational, but rather free from external interference in the sense of Anglo-American liberalism. In this vein, an individual’s autonomous decision was, for example, supposed to trump all familial and professional reservations. Thus, combining both aspects, many speakers were convinced
that the will of the patient should be determining, regardless what the doctors say; regardless what the relatives say. The patient has decided that when he was still healthy and of sound mind. One would go over his head and act against his will if one would do something else than what he has written down. And I believe that this is part of the dignity of the human person, and of the […] self-determination of humans, that he can decide what he wants (F-sec GE).
Furthermore, especially in the German FGs, many speakers expressed the conviction that there is not only a right, but actually a moral responsibility towards one’s next of kin or attending physicians to hold an AD. Individuals were expected to take care of their own EOL matters, that is, to make up their mind, come to a clear decision, and finally complete “a precise document” in order not to “burden another person with this responsibility” (F-sec GE) of making serious proxy decisions regarding other people’s life and death.
The Israeli groups, by comparison, were much more reluctant and ambivalent in this regard. Participants frequently suggested that the application of ADs has to be coordinated with other formal requirements including a restriction of the options that can be chosen. However, there were additional differences underlying this “Israeli” stance. Secular speakers mainly discussed the tension between individual self-determination and moral responsibilities towards others, e.g., relatives or attending physicians. The latter should not be burdened with executing problematic directives, especially if they have lethal consequences. The religious speakers, on the other hand, also pointed out further preconditions and limitations of individual self-determination, such as divine will, creation, and the natural order of things:
Many religious people believe that the time of death is written – that God knows when death will occur, and humans shouldn’t interfere. If that is true, how can anyone know when medical life support is appropriate, or when it merely prolongs dying? It is futile to man, but on the other hand – we are not the ones to do the work of nature, it would be taking a role that is conflicting with the creation and nature. (M-rel IL)
In contrast to the secular speakers, many religious participants saw “a great difference” (F-rel GE) between withholding and withdrawing medical treatment when it comes to ADs. The underlying intuition seemed to be that a purely consequentialist, outcome-oriented moral perspective ignores that it makes “a major difference if I omit something, or if I act directly” (F-rel GE). Especially the Israeli religious participants were practically unanimous in this respect. In consequence, they frequently contested the validity of ADs if these demanded a withdrawal of life support. Such demand was considered illegitimate and repeatedly equated with “promoting suicide” or even killing:
I agree, the directives in this case are not binding for the doctors. Generally speaking […], nobody can determine the fate of another person. In this case particularly – disconnecting from life support machines is the same as killing. It is legally forbidden and it is prohibited by Judaism. (M-rel IL)
Our findings thus indicate a certain tension between a secular emphasis on individual autonomy and more comprehensive religious perspectives. Thus, while many secular participants defended autonomy in the sense of unhampered self-determination, religious participants often complemented and weighed individual self-determination with other aspects such as responsibility for others or respect for divine creation or natural law. Furthermore, the distinction between withholding and withdrawing treatment played a decisive role in this context. Interestingly, however, it did not seem to be exclusively linked to Judaism as could be expected against the backdrop of the corresponding Halakhic teachings. Thus, while the participants at the Jewish Home San Francisco unanimously rejected the idea that there is a morally significant difference between withholding and withdrawing, the other religious speakers, including the Christian ones in Germany, expressed the sense that this difference should be taken into account.
B) Termination of life-sustaining treatment and euthanasia
We also found a complex array of moral stances towards termination of life-sustaining treatment and euthanasia amongst our respondents. In line with a liberal understanding of autonomy, many participants in the German and US-groups applied the right to self-determination to include withholding or withdrawing life-sustaining treatment. In the groups of aged residents at the Jewish Home San Francisco, this attitude was also backed by a sense of urgency due to being personally affected:
I believe in … euthanasia. … I have had so much experience in my own family with death directly, uh, to the point of uh, holding my sister when she died, and feeling her life spirit leave her body, that my attitude has changed a great deal on that score. … I think it’s very important even that the families change their attitudes and let people go (F-rel US).
By contrast, especially in the German groups, moral responsibilities towards other actors involved, such as relatives or medical professionals, were frequently weighed in and played out against individual self-determination. The underlying concern was that it is not legitimate to burden other persons with the responsibility of executing one’s own dying wish:
But one must also consider who can be burdened with that. I think, well even if one could talk about it with someone, a relative: “I want this and this not so,” but then one still has to stand up for this decision before the doctor: “Please turn the machine off, he shall die.” This is indeed a heavy burden. To burden one person with all of that … (F-sec GE).
The Israeli FGs generally expressed strong reservations against euthanasia. Thus, especially the religious speakers were strictly opposed to euthanasia and – although to a lesser degree – also to termination of life-sustaining treatment. Theological doctrines and interpretations figured prominently as a basis for the arguments expressed. Thus, for many Jewish Israeli respondents, life is given and taken by God, so that human decisions and actions are not allowed to interfere:
According to Jewish religion it is forbidden to hasten death, that would be equivalent to murder, and allowing doctors to decide about hastening death can lead to incorrect decisions and recklessness bordering on murder. M-rel IL: Yes, I also agree with this prohibition … We have to let nature take its course. (M-rel IL)
It is important to note, though, that the opposition to euthanasia was not necessarily attributed to Jewish religion or theology in a narrow sense, but often also to a broader notion of Jewish cultural identity. Thus, the idea of ending life was repeatedly described as being alien to one’s own cultural tradition and values, with one Israeli Jewish speaker finding it “actually quite curious” that “this concept never invaded Jewish thought, even though Jewish people suffered throughout history” (M-rel IL). This clear idea of a historical and cultural Jewish identity played an important role in the Israeli FGs. Thus, while the FG participants at the Jewish Home San Francisco articulated a rather lenient understanding of being Jewish – “you talk to … ten Jews and they probably have ten different ideas about that” (F-rel US) – the Israeli groups tended to formulate a much more compact, homogeneous conception:
As Jews, modern religious or otherwise, we should value life and respect our bodies. Furthermore, we have the responsibility to care for ourselves and seek medical treatment needed for our recovery-we owe that at least to ourselves, to our loved ones, and to God. (M-rel IL)
Interestingly, in the German groups, references to the country’s Nazi past seemed to play a similar role. They created a presumed cultural identity which precluded overly liberal stances towards euthanasia. In this sense, the following speaker alluded to the historical Nazi “euthanasia”-programmes in a slightly embarrassed manner:
I believe if one is thinking now that they possibly continue to live disabled, then this is actually…That will pretty soon go into the direction of [laughs] Auschwitz. Well, this is what the Nazis wanted too. That is only healthy people and so on. Life is not this way. (F-sec GE)
Our participants’ responses to the moral problem of euthanasia confirmed the impression that attitudes towards EOL decision making do not so much depend on a specific “culture” and “religion” as such, but on many different and interlaced factors. Thus, a general idea of individual autonomy played a major role for participants in both the US and German groups, religious or otherwise. This stance could be supported by the perspective of being personally affected through advanced age or ailing health. At the same time, however, the idea of responsibility for others, as well as lessons learnt from national history such as the Nazi euthanasia programme suggesting slippery slope effects, could act as a counterbalance against overly individualistic and liberalistic interpretations of autonomy as unrestricted personal self-determination. Once again, participants in the Israeli groups – religious as well as secular – drew a somewhat different picture with regard to euthanasia. But even there, opposition to euthanasia was not based on theological arguments alone (not even in the religious group), but rather on the cultural interpretation of Jewish identity as centring on a high valuation of life.
C) The role of the state regarding EOL
When it comes to the question how the state and political or legal regulations should deal with EOL decision making, rather clear-cut national differences emerged in the FGs. Thus, in the German groups, the state was mainly viewed as a neutral authority which should set general legal framework conditions, but stay out of concrete decision making processes regarding ADs or EOL situations. The state “should draw up a recommendation” but “must not exert pressure” (F-sec GE). Respecting highly individual decisions, e.g., regarding the format of ADs, was also expected:
Death is not a bureaucratic act, and neither is the way to it. And correspondingly, I would plead to keep the state as far as possible out of it. It can issue recommendations. It can lend a helping hand, especially with respect to such lists. …But otherwise it should stay out of it. Of course we want to make life easier for our doctors, but the patient comes first. (M-sec GER) It is ok for the state not to have a say. This is actually a condition. (M-sec GE)
In addition, the participants in the German FGs discussed the political regulation of EOL-issues in a European context. Thus, they compared the German setting to the situation in the Netherlands or Switzerland which have more permissive legal regulations regarding assisted suicide or euthanasia. Participants also discussed issues of euthanasia tourism and the different legal and juridical situation between the national and the European levels, addressing the complicated questions arising from transnational standardisation:
There is a woman, who … was in a condition that she could not react or decide anymore. There existed an advance directive, but the husband did not want to switch off. He wanted that she will be helped and is given a certain medication. … And this was not possible in Germany. … Now he travelled with her to Switzerland where she, so to say, was put to sleep. And now he sued at the Federal Court of Justice, which has dismissed the suit, but the European Court of Justice has accepted it. Now it will be decided, if the doctors acted here wrongly in refusing this euthanasia. (F-sec GE)
The Israeli FGs reserved a much more central role for the national state, albeit with completely different motives: The secular speakers put great trust in the state and its bodies (especially courts) as neutral, rational authorities which are above arbitrary individual preferences as well as partisan quarrels. The state “functions to maintain order and protect its citizens, and not leave it to the whims of everyone” (F-sec IL). It has the power to defend individual life and rights against majority pressure and religious influence and to enforce generally binding rules. In consequence, its impartial courts should decide in cases of conflict and doubt:
You need to consider all views and take into account all the contexts of a situation. Probably every one of those who are involved will have arguments that are very convincing. In the end who I think need to decide – it’s the court because the court looks at things objectively – or at least that’s what it should do. (F-sec IL)
The Israeli religious speakers, on the other hand, articulated the almost diametric view that the Israeli state indeed embodies a substantial religious stance. Many participants expressed a rather strong belief that state regulations regarding EOL decision making are legitimate since (and inasmuch as) they are actually in accordance with Jewish law (Halakha). Some participants were convinced that the national “law was made in agreement with the rabbis; otherwise it would not have become a law” (M-rel IL). This was perceived as a relieving reassurance that legally permissible decisions will also be morally irreproachable.
By contrast, the attitudes in the US FGs at the Jewish Home San Francisco showed much more reservation towards the state. Speakers repeatedly expressed the experience of being members of a religious or cultural minority in a political culture dominated by Christianity. The US was perceived as “primarily a Christian country” (F-rel US) which has also an impact on political regulations of EOL decision making “because here in the United States, we want to protect life, so much, that … you’re going to have some difficulty…, especially when it comes to … suggesting changes” (F-sec US). Since the mainstream Christian culture was seen as influencing political decisions and legal regulations that affect one’s own personal situation at the end of life, there was concern about ensuring individual autonomy and personal rights in EOL decision making among the Jewish Home residents:
That’s just as important as how you end your life, having the right to end it. Unfortunately, we don’t have that right. Not legally anyway. And sometimes I worry about that. Cause I live with a lot of pain that I manage, but what if I couldn’t manage it? Would I be able to say I don’t wanna live anymore please say goodbye, I wanna call my family? No! I don’t have that right. That worries me, I wish I could go to Congress and change the laws. Or find a new Dr. Kevorkian to come into the world. [CHUCKLES] (F-sec US)
Maybe due to the experience of being marginalized in a predominantly Christian culture, there was a strong awareness of the cultural aspects and differences of attitudes towards EOL in the US groups. In Israel, the Jewish homeland, the strong nexus between religion and nationality could explain the support and trust expressed by many of the Israeli respondents toward the role of the state. By contrast, the US experience could have led to a sense of alienation from mainstream culture and the political governance of EOL. Indeed, this sense was sometimes articulated by way of grim sarcasm in view of the perceived perplexities and inconsistencies of the majority position:
I mean um, Christians live to go to Heaven, and why, why is there such a fear of death? When Terry Schiavo died that was a big political case here, that was what, that’s what got me to do my first advance directive! And, as soon as she died, her brother went on the air, who was totally against pulling the tubes and said, “Well, she’s in a better place now.” […]: What’s wrong with this picture?! Why wouldn’t you let her go there, if she’s in a better place? (F-rel US)