“When patient monitoring becomes too intensive, it violates human dignity and human rights“

Modern medical technology shortens and makes care processes easier, while it ensures the safety of patients at the same time. However, monitoring or electronic sensors for remote surveillance keep being accompanied by ethical violations. Patients feel like they are being watched and in the worst-case scenario, robbed of their freedom and autonomy.


Photo: Prof. Wolfgang Rascher

Prof. Wolfgang Rascher; ©UKE

In this interview with MEDICA.de, Professor Wolfgang Rascher, Director of the Clinical Ethics Committee of the University Hospital Erlangen, Germany, talks about the legal constraints that need to be considered and in what way the increasing exposure to medical technology also affects the doctor-patient relationship.

Professor Rascher, what is the basic conflict between ethics and patient monitoring?

Wolfgang Rascher:
The basic conflict lies in control or rather the extent of control, because it is often accompanied by a patient’s loss of autonomy and freedom. If monitoring becomes too intensive, if the patient needs to be restrained for example, it borders on and violates human dignity and human rights. All of this can only be accounted for when it is in the best interest of the patient. Of course, monitoring of bodily functions is beneficial for a sick person. Malfunctions of the body are detected in time. Nursing staff and physicians can respond quickly and avoid complications. The monitoring of bodily functions has helped medicine enormously.

It gets more difficult, when adolescents or dementia patients disappear without permission from the ward and abscond treatment. In the worst-case scenario, they are being confined or monitored via electronic surveillance. This is de facto deprivation of liberty. On the other hand, this electronic surveillance also means safety for the patient, family members, nursing staff and the physician in charge. The resulting side effect notably violates privacy rights. This is the point where monitoring becomes an ethical issue and is therefore also justiciable.

Another ethical conflict at this point is assistance systems for elderly people. Old people live in their homes and are being monitored at the same time. This is basically a good approach, because they are being looked after this way and don’t have to go to a nursing home. These systems, for instance reminder systems to consume fluids, are based on long-term development. Voluntary health data collection is entirely unproblematic, but there are limits when it pertains to human rights or deprivation of privacy.

What areas of the hospital and care sector are particularly affected by this?

All medical areas are affected, but in particular patients at intensive care units and locked wards or if they are no longer of sound mind, as is the case with dementia. Patients walk away without permission and abscond from care. In this case, monitoring systems help and are beneficial.

When individual bodily functions are being monitored, such as blood pressure, blood glucose levels or heart rate for example, it does not present a problem. It only becomes highly problematic when the person as a whole is being monitored. At the end of the day, all areas of medicine monitor a patient. Laboratory values alone constitute monitoring. We accept this, because it benefits us. Conversely, we therefore have to ask ourselves how much monitoring we can tolerate and where the boundaries are.

Photo: Electronic tag

Electronic tags do not only locate the patient, they can also provide that they can not leave the ward in case of emergency; ©panthermedia.net/stocksolutions

What are the increasing drawbacks caused by the technologization of patient monitoring?

The drawbacks that particularly pertain to technologies like telemonitoring, smart home monitoring or apps are the loss of the patient’s autonomy, intimacy and freedom.

Another drawback of course is the loss of trust. The physician finds the patient guilty of not adhering to treatment and medical advice. There are systems for instance that are able to continuously monitor blood glucose levels, that being the effects of using insulin for diabetes mellitus. You can see exactly when the patient did not observe dietary restrictions, meaning he or she “sinned“. Some patients like this idea, because you can find out the causes for high blood glucose levels for diabetes and consider monitoring a tool to better treatment. Others feel belittled. The main problem then is that patients lose trust in the doctor and in the worst-case scenario stop the therapy. In this case, monitoring takes place at the expense of interpersonal relationships. Even though this allows you to measure physical data, mental issues cannot be diagnosed this way. You need to be aware of that. Every treatment has potentially undesired side effects. As a physician, I need to recognize and address this.

This is why we need research projects that determine what is good for patients and what is bad. The role of ethics is to determine criteria for this. Physicians need to more strongly reflect on their behavior and decisions. A continuous monitoring scenario needs to be weighed against the potential benefit. This also pertains to economic interests such as reduction in nursing staff. Monitoring systems can definitely replace one nurse per ward. Ultimately, the question becomes whether autonomy is possible despite monitoring.

What legal provisions regulate ethical issues in the medical technology arena?

One thing is clear: restraining measures are subject to approval. Here at the University Hospital Erlangen, we looked after a patient with a disease called Lesch-Nyhan syndrome. This is a rare metabolic disorder where patients –among other things- exhibit autoaggressive behavior. In these cases, we restrain patients in a wheelchair for their own safety. This restraining measure needs to be approved by a court of law. Every year we need to justify why we restrain patients for their own safety.

If the patient is capable, his or her permission is required for monitoring measures. When the patient is no longer able to do this, a proxy or court appointed guardian needs to make this decision. It is also important to discuss this case with the team, which can consult a clinical ethics committee.

There are four basic ethical principles that need to be considered to reach a decision. They are based on the four principles approach by Beauchamp and Childress, two U.S. ethicians. According to the first principle of “respect for autonomy“, every person is free to make his or her own decisions. This point also includes the request for permission or consent before any diagnostic or therapeutic measure. Americans call this informed consent. The principle of “non-maleficence“ is meant to identify the limits of action, avoid harmful interventions and curtail certain therapies that are very invasive and perhaps too experimental. The principle of “beneficence“ obligates the physician and nursing staff to act with the best interest of the patient in mind. The fourth principle is “fairness and equality“ and demands equal treatment of all people and equal distribution of health services. This is the theoretical foundation ethics deals with in everyday medical life and which contributes to improved patient treatment.

How can the conflict between safety and self-determination be resolved?

The solution lies in reflecting on what is best for the individual patient. The four ethical principles play an essential role in this. The treatment team and family members discuss what is right or wrong in a specific case or rather what is best for the patient. If there is a consensus about the patient’s presumed wishes, the solution is predetermined. We need observational studies to determine what these systems can do and what side effects there are. You can describe cases and fundamental problems and deliberate. It is imperative to determine to what extent new technologies are helpful and what limitations they have. I am not among those, who turn against these technologies, because they might be ethically problematic. However, we have instruments in clinical ethics to deliberate on these problems and find possible solutions for the individual patient.
Photo: Melanie Günther; Copyright: B. Frommann

©B. Frommann

The interview was conducted by Melanie Günther and translated from German by Elena O'Meara.