I had the pleasure of meeting with Heike Morris, the Legal Director at the Unabhängige Patientenberatung Deutschland – UPD (Independent Patient Counseling Germany). UPD is established pursuant to federal law to provide patients in Germany with free legal and medical advice regarding their healthcare. The organization is funded by, but independent from, the statutory health insurance funds. According to Morris, the main goal of UPD is to empower patients with information so that they can advocate for themselves. Here are some excerpts from our discussion:

How do you let the German public know that you exist?

That’s the most difficult thing. Only about 2-5% of the population knows that we exist. Typically, when there is a conflict or they have a question, they do research and find us. Our goal is for everyone to know that we exist, so, just in case something happens, they know they can come to us for free.

How many consultations does the organization conduct?

Since we became head of the Patientenberatung 2 years ago, we get more funding and we also have to achieve a goal to reach more people. Last year, we had 95,000 consultations, and this year, we have already had about 140,000 consultations.

On recent changes in medical law concerning patients’ rights:

In the last 4 years, we have had many changes in medical laws, most notably the Patientenrechtegesetz and Versorgungsstrukturgesetz. Prior to these changes, we only had judge-made law regarding patients’ rights, but now that the law is written, patients rights are clearer and it is easier for patients to exercise their rights. The problem, of course, is making people aware of these rights.

How is the organization funded?

We are funded by the statutory health insurance companies, but our organization is totally independent from them – we report directly to the Office of the Health Minister. There is just one paragraph in the law requires an organization like ours to exist and to be funded by, but independent from, the public health insurance fund. The reason for this law is really interesting. Basically, the health insurance companies, which have an obligation to counsel patients and explain legal basics to them, were not doing a very good job, so the Health Minister decided that something had to be done to improve the situation. The insurance companies still have an obligation to assist their insureds, but now they also have to fund our organization.

What kinds of things do you report to the Health Minister?

We document every consultation and draft a report to reflect the biggest problems encountered by patients.

What is the process for setting up an appointment with UPD?

Most people, more than 80%, just call and get advice immediately over the phone. We have a legal branch and a medical branch. If we cannot give advice immediately over the phone or if someone requests a personal meeting, then we make an appointment, usually within 1-2 weeks. About 8% of people write through the internet portal or send an email. We also have an App, but no one uses it yet. So, we have many avenues for contacting us. We have smaller offices in 30 cities around Germany, and we also travel 3-4 times a year to another 120 cities to try to reach the rural population. Before we arrive, we put an add in the local paper and some people make appointment in advance and some people just show up. People really like this, and it is also really nice for our employees to travel around Germany and meet people face-to-face.

When people call regarding treatment errors, what do they usually ask about? Do they already know that an error occurred?

No, most people just have a feeling that something went wrong, usually because they don’t feel better after treatment, or they have more pain, or another unexpected result, and they want to figure out what is going on. No one ever calls and tells us that the doctor talked to them about what happened. They usually tell us that they think something is wrong, and they actually just want to talk to the doctor. So many patients are not interested in litigation, they just want to talk to their doctors and understand what happened and feel that the doctor takes them seriously. In Germany we have a term Auf Augenhöhe, which in this situation means that the doctor respects the patient and his rights and doesn’t believe that he or she is the head of the situation.

How do you advise patients who suspect treatment errors?

We let them know that the public health insurance companies have a duty to assist them – through getting medical records or getting a free medical expert opinion about their treatment from the health insurance company’s doctors. They can also go to the Schlichtungstelle (medical arbitration boards), but that’s bit different, because then they have to confront the doctor, and most people don’t want to confront their doctor, before knowing what happened.

Regarding medical documentation, what do patients have a right to access?

Under the new law, they have a right to get all of their documents. Prior to the law, they didn’t have a right to subjective opinions from the doctors, but now, unless there is an extreme situation (i.e. a patient would be in danger), the doctor has to provide the entire medical file. Even now, doctors will only provide parts of the patient file, or deny the patient the right to access the file (one physician told the patient he could not provide the file because of the data protection law), or take a long time to respond to the patient’s request. It seems that doctors know that there is some legal right for patients to access their file and either they just don’t know the extent of the right to access or they just ignore it.

Our main goal is “health empowerment,” which means giving people the information they need to help themselves. So, we don’t actually get the documents for them but we let them know their rights.

From my prior research, it seems that Germany is progressing toward talking about errors within the healthcare organization through systems like CIRS, but it appears that there are still some problems with communication with patients after unexpected treatment outcomes?

Yes, we have great error reporting systems, but the doctors forgot to talk to the patients. We recently had a big discussion with APS, which is concerned with patient safety, and they talk about lack of communication being a huge problem. We were discussing whether communication training should be a mandatory part of the medical curriculum. Twenty years ago the medical profession in Germany was very paternalistic, and although it has changed since then, the paternalistic attitudes return when there are conflict situations.

What does the law say regarding error disclosure to patients?

The civil law doesn’t require doctors to disclose errors unless it is necessary to protect patients from further harm or unless the patient asks. This is really weird, because patients to not want to question their doctors without knowing what happened. And, doctors are really concerned that if they talk about errors with patients, then their malpractice insurance company will withdraw from the claim. But, we changed the law to avoid that – doctors can now communicate with patients about medical errors without risking their insurance coverage. However, I recently read an article that discussed how the change in the law did not affect the doctors’ communication practices. I think it is because of the strong error culture in the hospitals. Doctors are told that they will endanger the insurance for the whole hospital, and it is typical in Germany that if someone makes a mistake, they do not talk about it.

Of course, we do advise patients that under the new law they have a right to ask the doctor is there was an error and that the doctor must disclose this if they ask.

So, overall, it seems like communication with patients is a big problem, as least from the perspective of the patients you consult?

Definitely, one of the main conclusions in our annual report last year was the need for better communication between doctors and patients.

Doctors make sure to communicate with patients before treatment, because it is considered a treatment error in Germany if they don’t get proper informed consent, but when the treatment is over, the patient is left to figure out what happened on their own. The tradition is that patients get a letter from the doctor who was in charge of the treatment, but the letter is written in medical terms, so the patient cannot understand what it says. Patients also speak to someone before they leave the hospital, but it usually is not the doctor responsible for their treatment, and the doctor speaking to them just reads from the medical record, and no one really knows what happened with the patient’s treatment. I think this whole process needs to be reformed. It is like they forget the patient after the treatment is finished.