Today, medical science makes it possible to prolong life as never before. But this may happen against the will of patients who are alive but unable to communicate with the world. In a living will anyone of sound mind can identify the kinds of life-prolonging treatments they do not wish to receive.
For patients with massive brain damage, a living will may be the only way to communicate their wishes to the doctors whose training and instinct to save lives makes them more likely to recommend intensive care and artificial life support. With a living will patients remain agents over their own deaths even in situations where they are at their most vulnerable. The living will allows a person to anticipate a terminal condition and to “tell“ the doctor what end-of-life measures are desired. As a legal document, the living will guarantees that medical staff are obliged to respect these wishes.
However, recent research at the University of Vienna's Institute for Ethics and Law in Medicine shows that deathbed patients are not just concerned with the question of whether or not their lives should be prolonged. In fact, they may be even more concerned about the way in which they are treated: are their wishes respected? Are they given consideration? Are they allowed to die with dignity?
Anna's story: death as more than a technical last step
72 year old Anna D.* from Vienna, who participated in the study, had seen her husband die. Doctors did all they could; perhaps too much. Anna's husband wanted to die peacefully in his own bed with his family close to him. But his wish wasn't granted: instead he died in an intensive care unit connected to various tubes and machines. Anna D. feels that his suffering was prolonged unnecessarily. She wants a different death for herself, a death without tubes. She wants to be cared for but not forced back into a life that would have little quality. In her living will she tries to express this. She also thinks of her children who will be asked by doctors if further treatment is wanted. She wants to relieve them of the burden of deciding when to stop treatment.
The research results suggest that Anna's story is typical of so many others. Many people don't see living wills as just a document forcing doctors to stop at a certain point. People want much more - to be treated with dignity even when they are dying and when they can no longer express themselves. To them, dying is not a last technical step organized by a written will, but a social and communicative situation between themselves, their relatives and their doctors. They want to be treated as a person who is not cast aside at the end, who is listened to and whose last wishes are taken seriously. By means of the living will they try to take part in that communication. But some doctors find it hard to listen and understand wishes that talk of taking part in family life and life quality and not of curing illnesses. Many doctors assume that their logic of restoring health - by all means - is shared by all patients.
Hans' story: a last chance to get doctors to listen
Hans K.* (47 years) from Graz, another participant in the study, has never felt respected by doctors. He prefers alternative medicine to western methods and always found dialogue with conventional doctors difficult. They never take his opinions seriously. He gets angry about the way he is ignored. With his living will he wants to make sure his treatments will conform to his world view. He wants respect for what he thinks is right and not to be treated like a child. For Hans K., after many failed attempts, the living will is another effort to gain respect in his encounters with doctors. But his idea of good treatment is usually found unreasonable by doctors; they find it hard to understand that someone doesn't believe in the good of a highly potent and successful medicine. In their eyes Hans K. is ungrateful for the help they are offering.
One might think that to be treated with dignity, to be taken seriously and to be listened to in the last days and hours of one's life is a wish that should be granted to everyone. For some doctors this is what their profession is about - and their patients usually do not feel the need for a living will. But those with negative experiences try to use living wills to force doctors take their wishes into account. It is not new life-prolonging techniques that are the main problem, but instead misunderstandings and a lack of communication between doctors and patients that a law alone cannot change.