World hospice and palliative care day: Autonomy means quality of life

Interview with Dr. Gerhard, Director of the Palliative Medicine Center of Excellence, Associate Professor, Institute of General Medicine, Medical Faculty, University of Duisburg-Essen


At the end of one’s life, it is important to maintain quality of life. That’s why it is advisable with critically ill patients to include palliative medicine into their treatment at an early stage. On Thursday, the expert panel “Living with care @home” (Leben mit Pflege@home) at the World Hospice and Palliative Care Day revealed the advantages for affected persons and all involved parties.

Image: Christoph Gerhard ; Copyright: beta-web/Höpfner

© beta-web/Höpfner

Dr. Gerhard, you give a lecture in the Living with care @home panel on the subject of "More Autonomy despite critical illness". What does autonomy mean in this context?

Dr. Christoph Gerhard: The right to self-determination is anchored in the Germany Constitution and plays a central role in overall health care. And though it is often seen differently, the legislator has clearly regulated that autonomy and the right to self-determination take precedence in the Basic Law of the Federal Republic of Germany over any medical rationality. To be more explicit: if a patient says, "I don’t want a medically sensible treatment", the patient’s wish is what counts. It doesn’t matter how medically sensible the therapy might be.

How can autonomy be ensured despite critical illness?

Gerhard: There is the option of an advance directive that lets patients decide beforehand what they want or don’t want. However, there are some major problems in the implementation process. Oftentimes, the directive is not written precisely enough or physicians are not adhering to it. The process of advance care planning can remedy the situation. Using this process, we try to implement a range of consulting services for advance directives to help people in drafting their advance directives in a more precise and perhaps more rational way. After all, many advance directives are created during a climate of fear. But it’s also important to include current health care wishes as additional signs of the situation since I believe people are still able to act autonomously at times despite critical illness and cognitive failures, but we often simply don’t realize it.

For example, I just had a female patient who had a massive stroke, and was no longer able to speak and always pulled out the feeding tube – never the infusion needle. This behavior underscored her previously expressed wish not to be artificially nourished. Even though these things are often observed in everyday life, they are usually still disregarded. Nurses simply put a glove on the patient’s hand, so she was no longer able to pull out the feeding tube. In this case, only the disruption of the medical process is being considered and not the possibility that someone might be expressing their wishes this way.

What are limits to the autonomy of critically ill patients?

Gerhard: I am a proponent of a very broad model of autonomy and believe that even someone, who might not currently be able to exert autonomy, still has autonomy and that we need to be looking for it in the respective situation. In health care or other settings, you often hear, "This person no longer understands anything, so we don’t even need to consider autonomy." I would never settle for these types of simple and broad arguments, but would maintain that there has not been an intense enough search. A distortion of the face or turning it away when food is administered can be important signs. Or you ask the spouse what the husband would do if she could look inside his mind. I believe that virtually every human being has certain remainders of autonomy somewhere inside of them. And very much unlike many others, I would say that autonomy actually has few limits in this regard. When we set a limit, the problem is that we incapacitate certain people. In their case, their autonomy is then no longer being considered, let alone that others are actually looking for it.

Based on your experience, what is especially important to patients?

Gerhard: I believe autonomy is a very special need. Patients I’ve encountered in palliative medicine are primarily scared to lose their autonomy and dignity and to end up as a nursing case, thereby becoming dependent on others and suffering from severe pain. These fears are in part so strong that people immediately want to die. However, you can try to face these fears by assuring the affected people that their autonomy will be respected as much as possible and by educating them about their options in pain management and symptomatic treatment. We are able to alleviate pain and other symptoms with great palliative care but this knowledge is not very widely spread yet.  

Image: Dr. Christoph Gerhard in front of a green wall; Copyright: beta-web/Höpfner

Dr. Christoph Gerhard at the REHACARE 2016; © beta-web/Höpfner

What services and contact points are available for patients and their family members?

Gerhard: There are structures of palliative care and hospice structures. The 2015 Hospice and Palliative Care Act already accomplished or improved many aspects but when it comes to its implementation, many things are still being tested on whether they are truly being carried out or whether they are just stated somewhere in the law to put people’s minds at ease. We are in a difficult process right now. However, one positive signal is that in addition to palliative care units in hospitals, palliative care services also have their own option for billing with immediate effect and are permitted to support patients both in treatment and their advance care planning. Right now, the only question is whether hospitals approve this process or whether they reject it based on their mission as healing institutions.

Another important process is that we have available hospice care and it has always seen itself as a civic counseling entity for these types of concerns. Hospice care originated with normal citizens and was originally a protest movement against dehumanization in medicine.

What needs to be improved or changed in the area of palliative medicine and the contact points?

Gerhard: To some extent, palliative medicine is already well positioned to fulfill its duties and responsibilities. One of its weak points is that it primarily has been concerned with cancer patients and less with patients who suffer from other diseases. I am the spokesperson for the "Non-cancer patients" task force and we work on great concepts for patients who don’t have cancer. Unfortunately, palliative medicine often doesn’t play a role until the last stage of life, and until then, patients have to undergo many exams that are far too exhausting and perhaps even no longer desired. Their pain or labored breathing receive little attention. That’s why we fight to integrate palliative medicine at an early stage. You can approximately determine the right time by asking, "Would I be surprised if this patient were to die next year?" This question lets you assess the status quo and triggers the decision to be examined by a palliative care physician.

What is the importance of palliative medicine?

Gerhard: The importance of palliative medicine is that it focuses on autonomy and quality of life and not healing. This makes it different from all other medical specialties. I will illustrate this with an example: if I have appendicitis, the main goal is to cure it. That means my autonomy and quality of life are initially secondary during the time of surgery. However, if I am 90 years old and suffer from advanced heart failure, it’s a very different situation. The likelihood of me dying during the next year is between sixty and eighty percent. A surgical procedure to treat heart failure frequently does not result in saving the patient because he will die anyway. In this case, you should proceed with palliative medicine in mind, meaning you should ask: what symptoms does the patient have? What are the patient’s wishes and goals for the last year of his/her life? Where would he/she like to spend this last year? Not the length of life but the quality of life are important in this case.

Nicole Kaufmann