"The entire system of patient representation has collapsed"

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Corridor of a hospital

SPIEGEL:  Cancer patients are considered to be particularly at risk in the pandemic because their immune systems are often weakened by the treatment. How would you describe their situation?

Bergit Korschan-Kuhle: Corona threatens cancer patients on several levels. In order to be able to withstand their life-threatening diagnosis, they need an external safety net: such as reliable drug therapies and psychological support. Now many are unsure: is their therapy in danger of being postponed, for example because medication does not reach closed limits? Is the progression of your disease being monitored closely enough? For example, I need blood supplies every twelve days. The range of blood products across Europe has decreased by 30 percent. At the moment there is only a one to two day reserve instead of the usual three to four. It's not just about whether a deficiency really occurs, but also about the fear of it.

To person

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Christian O. Bruch / Christian O. Bruch / DER SPIEGEL

Bergit Korschan-Kuhle, born in 1957, is a board member of the "Leukemia and Lymphoma Aid Rhein-Main". She suffers from "myelodysplastic syndrome", a form of blood cancer. Since last year she has been the spokesperson for the patient council at the University Medical Center in Göttingen.

SPIEGEL: Are operations to remove tumors also being postponed?

Korschan-Kuhle: I've only heard of isolated cases. As patient representatives, however, we also lack data because the data transfer between the clinics and the German Cancer Registry is incredibly slow.

Spiegel: What can doctors do to address patient uncertainty?

Korschan-Kuhle: Corona caught us all off guard. The medical staff is not trained for crisis situations and the masks make understanding communication difficult. The security that doctors can normally give: This is the second pillar that has collapsed. The third is the support of family and friends. Due to the visitor ban in the hospitals, contact is disrupted. I notice this in myself: for the first time in a long time, as a cancer patient, I feel insecure again.

SPIEGEL: You have been suffering from myelodysplastic syndrome (MDS), a form of blood cancer, for 15 years. What effects did Corona have on yourself?

Korschan-Kuhle: At first I had insomnia. I kept worrying. Then I realized that having too much TV coverage wasn't good for me. Since then, I've been watching fewer Corona specials. My coping strategies are slowly starting to work again: I'm suppressing cancer. And not in such a way that I deny it, but I look at it from the outside, as it were, also by being well informed. MDS is a very complex, acute disease that stands still for me. Nobody can tell me when this might develop or when real leukemia breaks out.

"Go through four security levels"

SPIEGEL: What has changed during your hospital visits?

Korschan-Kuhle: Anyone who comes to the Göttingen University Hospital for a transfusion, chemotherapy or radiation treatment must now go through four security levels. At the first counter, symptoms are asked and fever is measured; the next, corona swabs are taken, until recently every two weeks, now every four. I had my tenth test the day before yesterday. Only then are you allowed to register for the day clinic and then for treatment. Occasionally you have to stand in line.

SPIEGEL: That sounds exhausting, especially for weak patients.

Korschan-Kuhle: Yes, it is, but I think it's very good. Most cancer patients accept these measures without complaint, as they are there to protect them.

SPIEGEL: The German Cancer Society surveyed 146 patients and 47 doctors in mid-April. Many feared long-term consequences due to the emotional stress that Corona has caused. What does that mean?

Korschan-Kuhle: It is particularly bad for patients who are diagnosed with a tumor for the first time. The doctor and patient understand each other poorly under the masks. There are many who speak indistinctly or softly. I know of doctors who, in their desperation, even refrain from wearing masks in educational discussions because otherwise they would not be able to read the facial expressions of those affected. This often shows their feelings and concerns much better than words.

SPIEGEL: In the study, almost all of the oncologists surveyed said they were worried about the mental health of their patients. Loneliness troubles them.

Korschan-Kuhle: I can confirm that. Visitors are strictly forbidden, especially on the cancer wards of the clinics. You are only allowed in with a special permit. Relatives or friends are not only missing as emotional supports, but also very practical in terms of care. Many patients are too painful and too weak to be able to make decisions on their own. They cannot communicate their needs. That is extremely stressful. In addition, the entire patient advocacy system has collapsed.

"Nurses could cushion many fears."

SPIEGEL: What is it about?

Korschan-Kuhle: Patient representatives are comparatively new in Germany. State laws provide for patient advocates in various parts of the healthcare system. University clinics are increasingly being certified according to whether they have a patient advisory board. At the beginning of the crisis, these organs were quickly exposed to patient involvement. The lockdown is over, but we are still not called in when decisions are made about new studies. Clinical studies should not only serve the needs of doctors or pharmaceutical companies, but above all those of those affected. Politicians must ensure that patient representatives can work together again.

SPIEGEL: Do you have any further demands on politics for cancer patients? 

Korschan-Kuhle: We definitely need more nursing staff! Nurses could cushion many fears. And we need digital devices that patients can use to talk to their relatives or doctors. But hospitals are at least as poorly digitally equipped as schools. We also need the electronic medical record.

SPIEGEL: Don't you have any concerns about data protection?

Korschan-Kuhle: I have concerns that people know far too little about their own clinical picture. German patients have to become more mature. At lectures I often say: If your car is broken, you don't go to any screwdriver, but to the specialist workshop. However, medical reports must finally be understandable for the layperson. The EU has long been stipulating this, but implementation in this country is slow.