Interview with the lecturer JUDr. Barbara Steinlauf, MA, Ph.D.

JUDr. Barbora Steinlauf, MA, Ph.D.

You would be hard pressed to find a more erudite and empathetic lawyer in the field of health law. She has chosen health law as her specialty, specifically the law relating to end-of-life care and death. She most often represents patients and their families. In what cases? And how does she assess the position of the Czech patient in the health care system?
We asked Barbara Steinlauf, who can be found giving lectures at the European School of Business & Management, as well as at medical schools and professional conferences.
She has been working systematically on healthcare and palliative care law since 2015. He regularly works with hospitals and hospices and trains their palliative care teams. She is the author of the publication Law and Care at the End of Life – Decision Making at the Intersection of Critical Care Medicine and Palliative Care. She has also contributed to commentaries on laws on health services or on compensation for harm caused by compulsory vaccination.

Health law is not a common legal specialty. What attracted you to it?

In health law, medicine, law and ethics meet, three areas that are very close to my heart. They all touch on values that are extremely precious to all of us – our health and life, our personal autonomy and dignity. I cannot think of another specialisation that is as meaningful as health law.

Why palliative care?

For me personally, palliative care is a medical field that brings humanity and a great willingness to respect the autonomy of the patient and his or her wishes regarding the form of end-of-life care into the medical setting. Nowadays, when medicine is highly technological, the patient can be left out of care. What is important to him, what matters to him, what he wants, is being lost. Palliative medicine brings us back to the patient and emphasises that it is impossible to provide good care without respecting the patient and their wishes. This approach is consistent with how I think about patients’ rights and their protection, and with my own approach to the provision of legal services.

Who are your usual clients and with what problems do they most often turn to you?

My clients are mostly patients and their families. Their stories usually concern interference with their rights by healthcare providers, sometimes involving a situation of improper healthcare provision that has resulted in personal injury to the patient. I also often deal with situations where the health insurance company refuses to reimburse the patient for the cost of treatment.

How are these cases handled?

With regard to the protection of patients’ rights, I am now dealing with several cases where parents have not been allowed to be present with their child who is hospitalised. Some of these cases are dealt with by way of a complaint, some of them go to court. In relation to personal injury compensation, I am currently dealing with two cases in which a child has been injured during or after birth. In one case, the child was left seriously injured, in the other case, sadly, the child died. Sometimes, in such cases, it is already possible to agree compensation for personal injury in out-of-court negotiations. If the hospital is not open to out-of-court negotiations, there is no option but to pursue a claim for compensation in court. In relation to the latter area, I can mention the case of a patient with a haematological disease who claimed compensation for the cost of treatment that is not normally covered by health insurance. The insurance company refused to reimburse him for the treatment. We therefore lodged an appeal and subsequently brought an action before the administrative court. We are now awaiting a hearing and judgment.

The Supreme Administrative Court recently ruled in your favor in a dispute between your client and a health insurance company over reimbursement for cancer treatment. Is this decision one of your greatest professional achievements?

I think he is one of them. In the past, I have been instrumental in success at the Supreme Administrative Court in cases involving the reimbursement of extraordinary medical treatment. However, in this case I acted as independent counsel. Since that Supreme Administrative Court ruling, I have also succeeded in other disputes with health insurance companies regarding extraordinary treatment reimbursement, sometimes in the context of appeals before the insurance company. I consider these decisions to be a great success, in some respects perhaps even greater than the aforementioned judgment of the Supreme Administrative Court, because we and our clients have not had to go through the whole process from the insurance company, through the municipal court and up to the Supreme Administrative Court, but the claim for reimbursement has already been recognised by the health insurance company itself.

What is the position of the Czech patient? Do you have a comparison with abroad?

Although in theory it is often said that the approach to patients is peer-to-peer, in practice we see that this is unfortunately still not true. The Czech environment, although it is of course gradually changing, is still very paternalistic. I mean that health professionals are not prepared to respect the decisions of the patient or his relatives. An example is the practice of some providers who perform surgical interventions (e.g. amputation) on patients at the end of life, even if the patient explicitly refuses such an intervention. Another example is the practice of providers who require a parent to be examined by a psychologist or psychiatrist when the parent is behaving “too emotionally” to check their judgment. In the United States or the United Kingdom, such an approach would be considered totally unacceptable. Such reactions are perfectly normal and natural for parents, especially if the situation is one in which a child has suffered a serious injury, a serious diagnosis has been made or there have been serious complications in treatment. Abroad, on the other hand, they would stress that health professionals, as professionals, should offer support to parents and create an environment in which they can make a calm and informed decision about the care they want for their child. Amputation without the patient’s consent would be considered a criminal offence in the United States, so no one would dare to perform it.

What do you think is the need for education?

It is important to remember that the patient decides on the form of healthcare. That the patient has the right to decide on this in the future by means of a previously expressed wish. That the patient has the right to choose his or her decision-making representative and that it is this representative who will make binding decisions on behalf of the patient as to what care is to be provided to the patient. Education is also needed in relation to the provision of care to paediatric patients and respect for the wishes of parents. It is primarily the parents who are responsible for their child and who should decide what is good for their child.

How do you want to change this?

In the near future, I want to start a project to raise awareness of patients’ rights at the end of life. I would like to raise public awareness of the possibility of making a decision through an advance directive about the care that will be provided to a patient in the future, when they are no longer able to express their decision, and that every patient can choose a representative to assert their rights and wishes about the form of healthcare they receive instead. I am developing the project with the support of the Abakus Foundation, from which I received a fellowship for palliative care professionals last year. This project is also inspired by the American initiative The Conversation Project, which has been working on similar issues since 2010.

In addition to your legal practice, you are a frequent lecturer. For whom?

The institutions I lecture for and the topics I cover in my lectures are very diverse. I most often lecture on courses for health service providers, especially hospices, nursing homes and palliative teams in hospitals. I also speak at conferences on topics in medical law, clinical ethics, palliative and paediatric care.

You are also a professor at the European School of Business & Management. How did this collaboration start?

I was first approached by a fellow lawyer who was a lecturer at the European School of Business & Management. She was looking for someone to join her and provide some of the lectures in her place. So I gradually took over some of the lectures and the supervision and marking of seminar and thesis papers on medico-legal topics. I now provide most of the lecturing of medical law.

Within what specialties can graduate students find your courses?

The Medical Law module is taught as part of the Healthcare Management MBA programe.

What should they take away from this study?

In my lectures, I try to convey one basic message, namely that patient autonomy is the guiding principle of health care delivery. Czech doctors and other healthcare professionals have been educated since their studies in how to use medical technology in the treatment of patients. However, they are taught very little about how to communicate with the patient, how to ask the patient what is important to them, what it means to respect the patient’s will and how to deal with situations where the patient refuses something that the doctor feels is necessary. However, clinical practice today cannot do without these skills. That’s why I want my lectures to leave with the knowledge that “the patient is in control of his or her life” and is free to decide what kind of healthcare he or she wants or does not want.

How often are patients’ rights neglected? And where are the biggest gaps?

Violations of patients’ rights are, unfortunately, very common. Although the Czech healthcare system is second to none in terms of quality of care, the protection of patients’ rights is still not a priority. We often encounter situations where the privacy or dignity of the patient is not respected. We often deal with situations where the patient does not have information about his or her state of health or about the possible risks of the healthcare offered. In recent years, situations in which the presence of close relatives is not allowed have also come to the forefront of discussions on patients’ rights. There are a number of ways to ensure greater protection of patients’ rights, and patient education is certainly one of them. If patients and their relatives do not assert their rights, the system will have no reason to change anything.