Table 3.
Barriers with examples.
| Barriers to contemplation and preparation | |
|---|---|
| Societal view on death | “Our society has forgotten how to accept the natural course of life that includes illness and death” (Char3) “We are led to believe that we can live as if there is no end” (Char3) “In our society, everyone is young, dynamic, healthy; people are not concerned with questions about: what if? People do not occupy themselves with illness and death; not with their own death and not with the death of close relatives” (Doc1) “We have a complete societal problem” (Doc1); “For us [in our society], death is associated with panic, grief, fear; it is a taboo topic” (W34) |
| No perceived relevance | “This [the end of life] is something that’s so far away. That’s why I don’t feel the urge of thinking about it now” (W29) “That’s something I’ll deal with in 20 or 15 years” (W51); “Nothing serious ever happened to me” (W44) “I think when I’m physically and mentally not capable anymore, what will happen to me doesn’t matter anyway” (W63) “That’s something I’m still too young to consider” (W64); “Many people think: Nothing will ever happen to me” (M65) |
| Denial | “People refuse to accept that life has an end. They refuse to accept that there should be preparations for the end of life” (Char3) “I have denied it, that’s for sure” (M78); “We all deny it” (W51); “Honestly, everyone denies the topic [end of life]. We do not think about what could happen to us next time we walk across the street; that we might get hit by a motorcycle and become seriously injured and heavily care-dependent” (Char1) |
| Perceived time effort | “It is not something that is done in an hour. It probably takes days or weeks, or I don’t know how long it takes [to identify the medical preferences]” (M33) |
| Emotions/Fear | “I think that many people shy away from it” (Doc3); “People are afraid of dying; not the fact that they have to die but the way of dying” (Doc2) “The majority of people are still afraid of the end of life and of dying. They do not want to be confronted with it” (Char2) “Do I really want to think about such a dark topic? A topic that will heavily depress my mood?” (M33); “Death is always connected to fear” (W51) “Suffering, pain; that causes fear. If you know there is something ahead that will bring suffering, then you are afraid of it” (W48) “I think it’s an emotional topic” (Doc4) |
| Barriers to documentation | |
| Costs | “I don’t know exactly how much it [a binding advance directive] costs, 100 or 200 EUR? For many of my patients this is a barrier” (Doc3) “Sure, it is a financial burden” (Doc5); “Advance directives and healthcare proxies are definitely too expensive. For the average person, 400 Euros for an advance directive is a fortune” (Doc1) “Many people are deterred by the costs. I think the costs are a very big hurdle” (Lawy1); “So expensive?” (W72) “What a cheek!” (M78) |
| Bureaucracy | “There are bureaucratic barriers and the differentiation between binding and non-binding advance directive is also related” (Doc2) “There are big hurdles to make an advance directive binding” (Doc3)∗; “For sure there are structural barriers” (Doc3) “Having to talk to doctors” (M33); “A hurdle, having to go to the notary” (W57) |
| Fear of dying too early | “Maybe people are afraid of receiving no intensive care at all if they state [in an advance directive], for example, that they don’t want to receive mechanical ventilation over a longer period of time” (Doc3) “Probably we are afraid that something [the end of life] might come too soon; that doctors withhold a therapy thinking they are doing good by releasing me from suffering, without knowing what I actually want in this situation” (W48) |
| Lack of knowledge | “This [the possibility of making an advance directive] is not something the majority of the public knows about” (Char3) “Even some people in the healthcare sector or in social services departments don’t know about advance directives” (Char3) “Many people don’t know that the non-binding advance directive is sufficient” (Doc5) “What does it [binding advance directive] cost?” (W57); “Is it a checklist or do I have to formulate it by myself?” (W57); “Healthcare proxy?” (W48); “Where is the difference?” (W29); “Let’s say I have an accident, I arrive at the hospital; how do the doctors know I have an advance directive? What happens when my husband brings it to the hospital 3 days later? Do the doctors have to withdraw treatment then?” (M59) |
| Lack of support | It would be necessary that [adult] children or other family members say: "Have you thought about making an advance directive? We can help you to make an appointment at the notary or drive you there, in case you need and help." And if no one offers this support, nothing happens (Doc3) |
| Perceived complexity | “The formulations, very complicated. You have to anticipate every possible scenario. With let’s say 15 standardized formulations, such as I don’t want any life-prolonging measures when I’m ill, this is not possible. Such formulations are useless” (Doc2); “That’s too, that sounds too complicated” (W48) |
∗ Binding advance directives can be registered in one of the two central registers for binding advance directives in Austria, the advance directive register of the Austrian lawyers (“Patientenverfügungsregister der österreichischen Rechtsanwälte”) or the advance directive register of the Austrian notaries (“Patientenverfügungsregister des österreichischen Notariats”). In cooperation with the Austrian Red Cross, hospitals in Austria have access to both registries.