Individuality instead of probability
Every day doctors are faced with the situation that a decision about a treatment has to be made, but their patients are no longer able to do so. If those affected have not left any indication of a specific will, the doctor asks the family members what is in the patient's interests. According to current studies, when such conflict situations are simulated, in a third of the cases the relatives do not make the decision that the patient would have made.
Researchers at the National Institutes of He alth have therefore developed a computer program that uses statistical data to predict which treatment a comparable patient would opt for. Fed with enough study results on fictitious decision-making situations, the scientists are convinced that his predictions would be more accurate - and therefore possibly preferable to the patient's proxies. But with probability calculations alone, one cannot escape the dilemma about the supposed will of patients who are unable to make decisions.
The advance of the US scientists led by David Wendler is provocative. So far, all laws, all guidelines for dealing with those unable to make decisions have been geared towards so-called representatives, i.e. towards people who, to the best of their conscience, make decisions in the interests of the patient. Since family members and life partners are most likely to know how a patient would like to live and possibly also die, relatives are given a particularly high priority.
Who should decide?
The really problematic decisions in coma patients or accident victims begin when the treatment can no longer reduce the suffering, but at most suppress it, and the question arises: What life is still worth living for the patient? Basically, such a weighty decision should only be made by the patient himself. However, when he can no longer do this, recourse to those who know and love him seems the best possible option. Even the supposed accuracy of the new computer program can do little to change this.
First of all, it would have to be proven that the software can calculate solid probabilities even for more complicated cases. However, the data that has been fed in so far is still scant: the calculator uses a total of 29 different fictitious case studies to which study participants have commented. More than twenty of these scenarios describe diseases whose consequences doctors have described as "unacceptable". A permanent coma from which there is no awakening.
It seems intuitively understandable that the study participants mostly spoke out against life-sustaining measures in such cases and the probabilities were therefore relatively clear. However, it seems questionable whether the computer program can still calculate such clear probabilities in the more difficult cases of "acceptable" consequences of the disease. Mental limitations or hemiplegia, for example, are probably judged differently by everyone.
The patient as an individual
But the decisive reason against using the probability simulator alone is not the correctness of its calculations. It is the individuality of each patient and their right to be respected in this uniqueness even if they are underage. Because no matter how precise the probabilities may be, which the "population-based treatment indicator" calculates - they always refer to statistics and are therefore the exact opposite of medical care, which is aimed at the value of the individual.
Even if ninety out of one hundred members of a defined population would say no to antibiotics when admitted to a hospital with severe Alzheimer's disease and pneumonia, that does not mean that a specific patient who is really fighting for his life would have made the same decision. In fact, only those who knew the human being when he was still in full possession of his spiritual powers can guess at this. You know the man's life story, his preferences and fears, his very own way of life.
One shouldn't underestimate the comfort it can give a person to know that their life is in the hands of the people they trust should the worst come to the worst. It doesn't matter whether they are family members or a long-time friend who has been given power of attorney to make important decisions. Trust in the loved one is a last line of defense against helplessness. No computer program can do that.
The probability calculator can be helpful in such emergency situations - for example, when the relatives are unsure or the patient no longer has anyone who can speak for him. But the binary logic of the machine cannot replace the consolation of human sympathy.