Soll er etwa verdursten? Wieso eine professionelle Patientenverfügung entscheidend ist

If someone becomes a nursing case, the question of life-prolonging measures often has to be clarified. This is not easy even with a living will – or how we call it, the SIP Patient Guardianship as a professional healthcare directive.

Prepare for the worst – it might really happen

Thorsten Kipp had discussed everything in detail with his father before the brain operation. The son knew his father’s will. He knew what his father wanted in case something went wrong during the serious operation and the eighty-four-year-old would not recover from his illness. No feeding through tubes. No resuscitation attempts. No artificial prolongation of life.

A few days before the operation, father and son signed a health care proxy. Thorsten Kipp was now allowed, if his father could no longer determine his own life, to decide in his place on therapy procedures and examinations, to refuse or allow the use of modern apparatus medicine. To represent his father’s will before doctors and nurses. The two of them dispensed with a living will in which the father recorded his wishes in writing. The father trusted his son, and the son trusted that everything would work out, and if it didn’t, then he would know how to decide.

It did not go well. After the operation, complications developed in the eighty-four-year-old. He had to have another operation. He could no longer speak, and what he still perceived of his environment, no one knew. Soon he was discharged from the intensive care unit as incapable of further therapy and transferred to rehab.

Artificial respiration put to the test every four weeks

The sick body’s defense weakened. He developed pneumonia. When the thermometer showed a fever of forty degrees and Kipp’s father was repeatedly admitted to a hospital emergency room, the doctors asked Kipp what they should do? Thorsten Kipp knew that his father did not want to be kept alive artificially. But where did that start, and where did he deny him life-saving treatment? Kipp felt helpless and finally allowed the doctors to convince him to give his father a feeding tube after all. Pneumonia with a high fever, he assumed, was a treatable complication. And if his father needed a feeding tube to receive necessary medication, he did not want to deprive him of it. His actions were determined by the hope that everything would turn out well after all. At this tense moment, he was not aware of the consequences of his decision. When you take responsibility for a sick relative, you have to make decisions every day. Sometimes big, sometimes small. One step follows the other, Kipp sums up.

When his father was discharged from the hospital another time as „out of treatment“ and transferred to a nursing home, Kipp realized that he no longer held the strings of having his father’s will respected. „Being admitted to the nursing home was a defeat for both of us. I knew my father would never have wanted it,“ Kipp says.

But now the wheel was turning and was hard to stop. If his father was unwell, a doctor was called to the nursing home to bring him back to health. If he showed new symptoms, the medicine was changed. No one checked whether the numerous medications he received every day really benefited him. The option of discontinuing an initiated therapy, of simply letting the old man die, did not exist. In Germany, once ventilation or dialysis has been started, it does not have to be reviewed. This is different from Switzerland, for example. There, artificial respiration is put to the test every four weeks. Is it still necessary and useful?

A prolongation of the dying process?

After talking to the nursing home director, Kipp turned to Elisabeth Lohmann. The medical director of the Hochtaunus palliative care team, together with another medical doctor, nursing staff, social workers and psychologists, cares for seriously ill people living at home or in nursing homes. The team relieves pain and symptoms such as nausea or shortness of breath. It tries to make the patient’s last stage of life as comfortable as possible, but it does not try to cure. Rather, it allows „someone to die,“ as Elisabeth Lohmann puts it. It is an attitude that is not taken for granted among her medical colleagues. Lohmann knows from experience that among physicians, the death of a patient is still perceived as a defeat.

They shy away from talking to seriously ill patients and their relatives about the option of dying. In some cases, clinics and nursing homes do not even ask for a living will or power of attorney; they simply act as if there were none. Yet a living will is legally binding, and anyone who does not comply with it is liable to prosecution. And yet Lohmann knows many relatives who, like Thorsten Kipp, find it difficult to enforce the will of their sick relative. „We can’t let him starve and die of thirst,“ relatives are told when they speak out against artificial feeding. „That’s active euthanasia,“ they are accused when they refuse infusions. Statements that influence decision-making – especially when they come from doctors.

Lohmann calls such statements „complete nonsense.“ „There is a lack of education there, both in professional circles and among lay people. It is part of a normal dying process that people stop eating, stop drinking, withdraw more and more into themselves,“ she says. Nature has miraculously prepared the body for the dying process, she said. „When there is a lack of fluids, endorphins are released, less mucus and urine is produced. All relieving for the dying organism,“ explains Lohmann. We humans, however, are increasingly interfering in this process without asking whether it is a question of artificially prolonging life or prolonging the dying process.

Decision against modern medicine

Elisabeth Lohmann also talks at length with Thorsten Kipp. The son wanted to „interrupt an automatic continuation of the possibly agonizing dying process in any case.“ However, Lohmann’s suggestion to stop feeding him via the stomach tube caused him great concern, but after intensive consultations with the palliative team, he decided to do so. From that day on, his father was fed only what he could take in by mouth and swallow. That wasn’t much. He lived like that for two weeks. Then Lohmann approached Kipp about the inconsistency of this action. His father had opposed a feeding tube, but was still getting fluids through tubes. Taking his father’s water was the most difficult of all decisions, Kipp says with some temporal distance. Time and again, he vacillated between conviction and guilt when he saw his father lying in bed. He visited him every day, and every day he struggled with his conscience.

After stopping fluid delivery, everything happened very quickly. After a few days without water, Thorsten Kipp’s father passed away. To this day, Kipp’s voice grows more serious, his forehead more wrinkled and his gaze fixed when he talks about this final decision. For it was a decision with nature, but against modern medicine. A dilemma. Lohmann also sees it, because the more life-prolonging therapies modern medicine offers, the more consciously they must be examined for their usefulness.

Thorsten Kipp is sure that he acted in the spirit of his father. But these were difficult steps, and he often felt left alone by the doctors in the beginning. He lacked information and was unaware of some of the options. Otherwise, he might have made more consistent decisions earlier, as his father had wished.

She sensed that he no longer wanted to live

Thorsten Kipp at least had a health care proxy and his father’s blessing. Franka Ott had nothing in hand when her husband suffered a stroke. From one day to the next, he could no longer walk, speak, see or live independently.

After critical weeks in the hospital, Ott’s husband entered rehab and then returned home as a nursing case. There, with the support of a nursing service, she washed, fed and cared for him. Although Walter Ott* had dealt professionally with ethical issues in medicine, he had made no living will, no health care proxy and no explicit statements. Nevertheless, Franka Ott knew that he would not have wanted such a life.

Communication with her husband was difficult; Franka Ott could no longer discuss specific questions with him. Nevertheless, she felt close to her sick husband, she sensed that he no longer wanted to live, that he despaired over his condition. But instead of following her impulses, she listened to the advice of medical professionals, some of whom she was friends with. Their advice was, „Give him food to give him enough energy for the next rehab. He needs energy to recover.“

Putting the puzzle pieces together

She fed him three times each day. But because he struggled to swallow, she also fed him through a tube, at times running up to three liters of fluid into her husband’s skin. She was aware that this was not what her husband wanted, but she continued anyway. She simply did not have an overview of the situation, was alone and overwhelmed, she later described. There was no attending physician who accompanied the disease process and had an overview of the situation. To no one did she dare say, „I think my husband wants to die.“ The fear was too great that they might think she wanted to get rid of him.

Franka Ott also got to know Elisabeth Lohmann and her team through an acquaintance. During her first visit with the Otts, Lohmann asked about a living will. No one had asked about it until then. What her husband would have wanted, if he could still express himself, had not played a role in the treatment so far.

If there is no written will and no power of attorney, the presumed will of the patient must be determined with the help of ethical counseling. Palliative teams such as that of the Hochtaunuskreis offer such consultations. Franka Ott also made up her mind to do so. With the help of such counseling, she wanted to decide what her husband could no longer decide on his own.

Elisabeth Lohmann asked old friends, work colleagues and Walter Ott’s attending physicians for their assessment of the situation. How had Walter Ott commented on such cases in the past? Had he ever stated wishes? What was his health condition really like? Lohmann collected many pieces of the puzzle together so that in the end a picture of Walter Ott’s will emerged that was as clear as possible.

On a Tuesday in mid-summer, Franka Ott, her children and grandchildren, members of the palliative care team, an independent ethics consultant and Walter Ott gathered around a large table in the family home. Walter Ott had to be pushed to the table by his son in his wheelchair. Ms. Lohmann put together all the pieces of the puzzle she had collected. Walter Ott’s physical and mental condition came to the table, as did statements he had made about death and dying. Walter Ott listened attentively. Everyone at the table could express their impressions. Then a consensus had to be found. What was Ott’s will? The frail man sat peacefully by as the decision was made to end artificial feeding.

In the days that followed, Franka Ott still fed her husband, but he hardly ate anything. She offered him something to drink, but he was not thirsty. They hardly spoke to each other, everything was said. They were simply together and waited. They were waiting for death. Ten days after the meeting at the big table, he came.

Franka Ott knows for sure that her husband agreed with this way. But she would not have been able to push it through on her own, not without Elisabeth Lohmann addressing the issue of dying quite openly. Perhaps a written living will would have made it easier for her to talk to doctors about it earlier. She is not sure about that.

Since his father’s death, Thorsten Kipp has given a lot of thought to the question of when a life is still worth living. He has defined this for his own life in a living will. After intensive discussions, he entrusted his health care proxy to a good friend. He is someone whom Kipp trusts to fight for his will even in emotional moments, who not only signs but also implements it, who is sure of his actions even when doubts arise – all important qualities when you take on such responsibility, Kipp himself has noticed.

How do I write a living will?

You should take your time when writing a living will. Not all decisions have to be made and formulated in one day. When writing an advance directive, it is important to be specific and detailed about your wishes so that there is no room for maneuver for the attending physicians. Vague formulations such as „no prolongation of the dying process“ are too imprecise. In addition to putting one’s wishes in writing, one should discuss the contents of the living will with the person to whom one gives one’s health care proxy. The authorized person does not have to be a relative. One may name anyone one trusts and who consents to the task. Anyone who is of legal age may write a living will. Young people should also do so, because doctors and relatives find it particularly difficult to make decisions for them. A living will must be dated and signed. If possible, the document should be countersigned by someone who can attest to the fact that the author was sane. This can be done, for example, by the family doctor. The living will should be checked regularly to see whether it still corresponds to the person’s own will. It is best to inform someone where the advance directive is kept or to place it in a place that is easy to find.

Learn more about the SIP Patient Guardianship, a professional living will or patient directive, by following the link. The original article from Frankfurter Allgemeine Sonntagszeitung can be found here.