BERLIN — The doctor had no doubt that it was a matter of life or death. A patient with severe pneumonia had arrived down in the emergency room, he told his colleague on the phone. He was no longer breathing well, which in medical jargon means something like: He is at risk of suffocating. “Can you take him over to the intensive care unit (ICU) very quickly?” the doctor requested.
The patient’s relatives wanted everything possible to be done. The Munich doctor took on the patient and was thus faced with the question: How does one deal with a seriously ill patient whom children and wife want to save at all costs but can no longer be saved from a medical perspective?
The ultimate question
The patient was almost 90 years old and had only been able to get out of bed in the nursing home with help. “It was clear that if we intubated him, he would most likely be artificially ventilated until the end of his life,” the intensive care physician recalls.
Will he really find this life worth living?
Without such support, he would most likely not survive. And even if he was saved, it was hard to imagine that the patient could continue living without a tracheotomy and a breathing tube, as well as an artificial feeding tube — both permanent. “Will he really find this life worth living?” the doctor wondered.
The intensive care physician does not want her name published because the question of who should be connected to life-support devices is one of the most ethically difficult questions in medicine. Because, of course, family members understandably want their loved one’s life to be saved. They are highly emotional and do not want to lose their father, mother or child. And doctors also want to save lives.
But deciding when to end treatment is difficult. If a living will is available, it often does not help. Moreover, the decision involves not only medical factors but also fundamental ethical values.
Not every life can be saved
Uwe Janssens, a spokesman for the Ethics Section of the German Interdisciplinary Association for Intensive Care and Emergency Medicine (Divi), has been dealing with the question of when therapy is no longer in the patient’s best interest for more than 30 years.
“Since then, our medical options have increased extremely,” he says. Some people find it difficult to even recognize the limits of what is possible, he adds. “But we have to admit to ourselves that not every life can be saved,” says the chief physician from St. Antonius Hospital in Eschweiler, North Rhine-Westphalia. And that it is not always in the best interest of an ICU patient to prolong the little bit of life that is still left in them “until the day of no return.”
All patients must be considered equally
Politics, society and medicine must finally face up to the long-repressed question, Janssens says: Where do we draw the line? When is it better to turn off the equipment because the patient is facing unnecessary suffering? The necessity of this discussion is shown by a 2015 study. (There are no more recent studies since science is also giving the topic a wide berth). Around one in eight Germans died in an intensive care unit at that time, according to the study. Since then, the figure has been rising by 2.3 percentage points per year.
In the pandemic, the issue has become more explosive, with triage coming into play. Since there are suddenly so many terminally ill patients, every ICU bed is needed. According to press reports, patients have had to be denied optimal treatment when other patients seemed to need it more urgently.
Up until now, such triage has been carried out mainly at the entrance door of the ICU. If several patients are waiting there, the principle applies: the bed is given to whoever has the greatest chance of survival. In a keynote article for Divi, Munich-based medical ethicist Georg Marckmann raised the question: From an ethical point of view, shouldn’t patients who are already in intensive care also be included in the decision? Wouldn’t it sometimes be fairer to prematurely end an almost hopeless treatment in one patient instead of denying it to another one with better chances? “It is not ethically justifiable to give preference to someone just because they were admitted first,” the expert from Ludwig Maximilian University says. All patients must be considered equally, he says.
Survival as the ultimate aim?
Six years ago, Divi already published a similar paper (“Limits to the Meaningfulness of Intensive Care Medicine”) and Janssens was one of the authors. “Our modern medicine has lost track of something,” he says — keeping an eye on where the journey is going. What are the therapeutic goals that will best serve people? It’s not just lung out, tumor gone, the doctor says. “You can only formulate the treatment goal if you know what the patient was, what they are, and what they want.”
Survival in itself is not a treatment goal, he says. Neither is doing everything medically possible. “It’s about doing what’s in the patient’s best interest. To envisage a therapeutic goal that they consider desirable in that situation.” And sometimes it may “only” be alleviating suffering and pain.
Survival in itself is not a treatment goal
A physician who avoids asking these questions risks not only harming their patient because there is no such thing as treatment without side effects. Said doctor also endangers the well-being of other people. So-called overtherapy — a ventilator that is not turned off against all reason, for example — increases the risk of depressive symptoms in the relatives because it deprives them of the opportunity to bid a dignified farewell to the anesthetized and ventilated person. For physicians and nurses, such poor decisions make burnout more likely in the long run.
The goal of the treatment may change during the course of treatment. If a COVID-19 patient with respiratory distress is admitted to an ICU, the initial goal is usually to save their life. However, if the attempt to control the disease with machines and medications fails, as it does for one in two people over the age of 60, the situation changes. The attempt to restore the original state of health must be declared a failure.
Nine years ago, researchers tried for the first time to measure how often doctors fail to live up to their oath — because they prolong a patient’s life without achieving an effect that the patients themselves would consider beneficial.
The fate of 1,136 patients in five large U.S. intensive care units was recorded. About one in ten was overtreated. Of the 123 patients who were definitely overtreated, 84 did not leave the hospital alive, and a further 20 died within the following six months.
Living wills are not enough
The medical team and relatives must ask themselves the question: Would the patient really have wanted to be kept alive as long as possible, whatever the cost? Would they be satisfied with a life as a permanent patient in a home?
This is also a problem in the German healthcare system, Janssens says. Often, doctors can steer clear of such delicate decisions because there is always another doctor, another authority, to whom one can refer the patient. Thus, many avoid the question of whether the new treatment goal should become to enable the patient to die as humanely as possible.
This is because it is often difficult to find out what the patient’s will is. It is true that a living will can provide an initial orientation. But it often cannot be applied to the specific treatment, says medical ethicist Marckmann. “In view of comparable international experiences, the instrument has already been declared a failure.”
Of course, what relatives think plays a decisive role in the search for what the patient wants. However, according to the expert, studies have shown that what relatives think is the patient’s treatment wish does not correspond to the patient’s actual wish.
“The task of the physician and the treatment team in such a situation is to point out the medical options.” And to take a stance. What should they recommend for that individual? What is the likelihood of this or that development occurring? In doing so, doctors are also allowed to draw boundaries: “Pointless treatment measures that can no longer achieve a realistic goal may be rejected, even if the relatives want them.”
It is not always easy to reach a consensus on the presumed will of the patient, says Stefan Kluge, head of intensive care medicine at Hamburg University Hospital. Sometimes, for example, the children do not agree among themselves on what is desirable for the mother. Or they want to delay the inevitable separation.
Sometimes friends or family members have unrealistic ideas. “She’s such a fighter. Can’t we give her a little more time?” are phrases he hears again and again, Kluge says. But there are also cases of overtreatment at the end of life, he says, because doctors are afraid that relatives will complain if the equipment is switched off too soon.
The intensive care doctor based in Munich who does not want her name published eventually sat down with the relatives, and asked them about the person behind the diagnosis. A life with a tracheotomy and feeding tube? No, said the relatives. Our father would not have wanted that.
A few days later, the patient died. Weeks later, a letter arrived: “Thank you for this journey and the peace of mind that we were able to find a decision together.”
