However, the initial impetus for his efforts to include death in his life as a physician came much earlier: Shortly after the fall of the Berlin Wall, which Ullrich Fleck lived through as a surgeon in the former East German city of Erfurt, his medical mentor fell ill and finally died at the age of only 52. Even the "new" Western medicine could not save his admired teacher. In an interview with esanum, Ullrich Fleck shares how he manages the balancing act between permitted end-of-life care and euthanasia often requested by patients, how palliative care centres in Brandenburg work, and why it is so important that health insurance companies stick to flat rates per case instead of charging for individual services.
In 2008, the state government of Brandenburg commissioned an expert report, and in this report we were named as one of the leading structures as a palliative and hospice association. As a result of the entire cooperation we had set up, the recommendation was that palliative support centres should be developed, about ten in the whole state of Brandenburg. As I was already involved in these structures and in the State Medical Association, this is how we got such a support system here, and the AAPV, the General Medical Palliative Care, became the SAPV, the Specialised Medical Palliative Care system with physicians who received appropriate additional training. This includes not only general practitioners, who are already heavily burdened, but also inpatient physicians and senior physicians from different departments at the clinic. Physicians who wish to cooperate with the centre need an additional qualification in palliative medicine.
Well, there was one patient with whom even the general practitioner felt overwhelmed by the overall situation. He was a 74-year-old man with bowel cancer. Let's call him “Paul”. A few years before, the intestinal tumour had been surgically removed. But now, many years later, as is often the case, he was getting small metastases all over the peritoneum. He also had an intestinal obstruction, underwent another surgical operation and was then discharged home with an artificial anus, from where the thin stool came out of the small bowel. The wound treatment was difficult, because this thin stool is aggressive and irritates the skin when it gets in contact with it. Working with the nursing team, who handled things very professionally, he was able to recover from this bowel obstruction and went on to have a good quality of life. Yet, the metastases continued to grow and so the next intestinal obstruction followed. We kept finding ourselves in the situation where we had to decide whether the intestinal obstruction should lead to the patient being let go from this world or whether we should try to find a therapeutic solution and give him a bit more time to live. Once a month we faced a particular situation of intestinal obstruction with a certain degree of faecal vomiting. It is fair to say that this causes the patient a great deal of suffering, and you ask yourself whether it is necessary to continue torturing the patient in this way.
In the end, we succeeded in giving him more than nine months of quality of life and time to live, and he was also able to spend a lot of time in the garden with his partner. He eventually passed away. He had many ailments, which we were able to calm with strong medication, and he was able to say goodbye to his family. Towards the end he fell asleep more, and he was able to have a more peaceful sleep. This is the sort of situation that becomes rather too much for a resident colleague, especially since the metastases were growing between the artificial intestinal outlet and the abdominal wall and we had to make sure that the cancer wouldn't break through.
Everyone has a principle of hope. You can't tell someone a supposed truth right from the start in a destructive way, because we don't know when or how they might die. So you try to let the principle of hope always go along without lying to the patient. You honestly tell them what the options are and decide whether or not they want to go along with them. In almost everyone's case, there is a talk about the wish to die. In other words, the question is raised: “Doctor, don't you have an injection so that if I get really bad, I can quickly leave this world?” Even if we had such a syringe, we have to clarify that “no, we are not a death squad, we are here to treat your many symptoms properly and to spare you pain. If the drugs have the side effect of making you leave a little sooner, fair enough.” But it's not up to us as physicians to determine the moment, it's up to the patient and their overall condition.
No, I wouldn't like that. We need to encourage physicians to take more responsibility in this final stage. There is no need for legislation to regulate this. Because with every law there is a legal loophole, a personal scope of action, which the physician must fill with their competence.
Since 2015, a revised palliative and hospice law has been in place in Germany, which entitles every citizen to receive good care at the end of life. Paragraph 132d requires physicians and nurses to undergo additional training in palliative medicine. However, this must also be remunerated appropriately. Our complex work cannot be represented in individual services in such a way that one says, I was there for 15 minutes, I had a 15-minute drive to get there, I administered this and that medication, and all of that is broken down according to individual services. This has to be paid at a flat rate, because sometimes I have to talk a lot, sometimes only a little, sometimes I have to stay a long time to wait and check on the effects of the medication, or sometimes I can delegate care to a relative.
The health insurance companies would like to have individual services billed, but then things are like in the hospital. I know that system very well, we are mainly busy with the documentation and no longer have the time to hold the patient's hand, to listen to their needs, to really be there for them. Health insurance companies must give us this time as a flat rate instead of distrusting us on the perception that we just want to get rich. We aren’t here for the insurance companies, and they also mustn’t think that they can keep lowering the flat rates. Outpatient palliative care close to home is of great value, patients and relatives are keen to make use of it, and they have the right to do so according to the law. Seventy five percent of our patients are able to die at home among their families.
In recent years and decades, palliative care has developed considerably, new guidelines have been adopted, and it has been lifted to a higher scientific level. This has also meant a lot for the students. Now, palliative care is a curriculum subject. Aspects of palliative medicine have been included in the training curriculum for every subject. Even though psychological aspects play a major role in the care of a dying person, the situation looks somewhat different in gynaecology than in urology. Now, however, the chief physicians would also have to change their perspective and also explain in teaching and further training how a physician should deal with the context when there is no longer a cure for a disease. After all, death is part of life and people die of certain illnesses.
It is a process, and every physician who feels committed to healing the patient should acknowledge in the same way that he or she could come to a certain point where curative treatment is no longer the main goal. And this change of therapy goal must be discussed early on with, and supported by the patient. The fact is that when someone is affected by chronic obstructive pulmonary disease, at some point the physician is faced with a situation where the breathlessness is so severe that the only thing that can help are sedatives to prevent the patient from choking. And also the lung specialist cannot just take care of these patients as long as they can still be treated well, as long as the patient can still breathe well, and if at some point it gets bad, they say, please go home now, we will call a specialised palliative physician to see you and they will explain everything to you. Our own disciplines always need to be involved in shaping this process.
You really have to make the time. This isn't time that you take away from your daily working hours. Physicians in hospitals also have to visit patients after their shift and discuss certain steps with them. It involves empathy; when I say that I want to do this and that, I also want to take the time for it. You really get a lot back, you have very grateful patients who understand well that a special service is being provided for them. Looking at my own work and how I was involved during my time as head physician, I can say that sometimes you just go on a Saturday or Sunday. From time to time, you talk on the phone a bit more often. It has even happened that while I was in the operating room, a nurse called and asked, "Doctor, what should I do?" One thing I still say is that you need many physicians and not a few specialists, because you can only look after two to four patients. You visit them between two and four times a week to see if everything is going as it should. You learn a lot and you have very intimate talks with the patient allowing you to find out exactly what is really important for them, whether medication is the right thing to do, or whether it is better to hire a physiotherapist who does lymphatic drainage to alleviate a severe suffering.
Yes, she had breast cancer. She was also able to say goodbye to her children and grandchildren and die at home. Of course, that was very hard for me. I am now focusing on a task that I still want to accomplish: I want to set up a children's hospice here in our district. It is not yet clear exactly how this will be organised, whether the children will be admitted for longer periods of time or only for days at a time, in order to relieve the families affected. But I think we do need a facility like this in our region.