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Prof. Dr. Wilfried Härle

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Wissenschaftlich-Theologisches Seminar [Emeritus for Systematic Theology and Ethics] at the University of Heidelberg

 

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Interview of October 17, 2009 with Marion Bär

 

Professor Härle, within the NAR Seminars you will talk about the handling of unbearable suffering. Many people are afraid to enter into a state of unbearable suffering at the end of their life’s. As an ethicist and pastoral worker you must know that fear very well. Human suffering at the end of life has many faces: Pain, fear, desperation. But when does suffering become unbearable suffering?

There you begin with the most difficult question. We often have a paradox situation. A very sick or dying person says: “My suffering is unbearable” and an outsider replies (or thinks to himself): “ But you are bearing it! You have not killed yourself yet”. With such logic, one doesn’t do justice to the meaning of this statement and these words, which mean “I am not able to bear this anymore! I cannot go on any longer!” And nobody else is authorized to say something about our ability. This statement needs to be taken serious, even when one might say from a distance, there are two patients suffering from the same and one is bearing it and why not the other? Certainly, you can encourage someone to keep on trying a little longer. But in the end, only the person concerned can say “ I just can’t go on anymore”.
When you do not push away the word “unbearable”, the statement: “I suffer unbearably” encloses an important message. It signifies:“ Is there a possibility to help me get back to my life of which I can say, I can bear it. It might not be what I wished for, it is difficult but it’s alright”.

 

 

 

When we talk about unbearable suffering, it is often about people that can’t or cannot speak for themselves anymore: little children, people with major disabilities, coma patients, people with dementia…

To begin with: One can express unbearable suffering in many ways, even when speech is not available (anymore). Through facial expression, through screams or postures. When we are alert in dealing with people concerned, we have the possibility to determine that a person has to have unbearable pain even though the word “pain” or “unbearable” was not spoken.
Furthermore: The group of people you mentioned is often judged very general that their suffering is unbearable. But one has to be careful with the diagnosis of other people! For example, take a person in an agrypnocoma: On one side it is being said, that this person is not able to feel anything anymore, on the other hand it is claimed that this person is suffering unbearable. So what is the truth? Very often those statements are projections: “ In such situation you have to suffer unbearable!” In some cases such projections might be justified. Nevertheless I am very sceptical about those general diagnosis’s of others.

 

 

 

Not only the directly concerned person suffers in such a situation but also the people that are close to him and accompany him. What kind of suffering is it for them?

I think it is multiple suffering. For one, the suffering of an insecurity: I don’t know how the other person is feeling. I can hear a number of things, see, compare (how was it a week ago, how was it in the past, how has it always been), but I do not have the possibility to look inside that person. Secondly what adds to it, is this horrible helplessness. I am sitting beside as an relative, doctor, nurse, wishing to help so badly but can’t. And then I might get the appeal: “Please help me!” And I always come back and realize, that the situation is not getting any better. Here it often develops a psychological strain and a situation of insecurity from which one just wants to flee.
A high-ranking palliative medicine physician admitted once at a lecture, that he has this impulse to just walk by the rooms of some of the patients on whom he cannot get a grip on the pain. But he resisted this impulse, walked in and said to the patient: “I am so sorry, that I cannot help you!” And then this woman laid her hand on his arm and said:” But Professor, you are helping me! You are coming to the ward rounds every day.” He didn’t even think of that, the fact that he did not flee from the sickbed but faced that situation with his limited medical possibilities. And by not abandoning the patient, he was of tremendous comfort to the woman.

 

 

 

So that means: When I have the feeling I cannot do anything anymore, I can at least be there for the other?

Exactly! And this being there is often underestimated in its meaning. However, with relatives, the time factor plays a role: How long can someone bear to notice that it is not going forward and that the situation is still so desperate? One of the big questions for me in regards to clinical pastoral care is, if clinical pastoral counsellor should put the focus of their attention more on the relatives, who, in such situations of unbearable suffering, unbearably suffer themselves.

 

 

 

When my strength as a relative is exhausted and I have the feeling I cannot bear it any longer: What can I do then?

As a pastoral counsellor I would always encourage relatives to create free spaces within the realms of possibility, also do something for themselves: being able to take a deep breath, experience something positive. That is often not an easy step to do. From the patient I can only hope that he will give me that free space. That he says: Yes you do that, that’s okay! Because it is necessary! Not only so relatives can continue to care or accompany but also so the most precious between patient and relative will not get lost: The relationship, the common history, memories and experiences that lasted so long.

 

 

 

Doesn’t the fear of unbearable suffering also resonate the fear to be at the mercy of other people, not to be able to decide for oneself?

Indeed, our society has an exorbitant fear of an end, in which I do not stand on the command bridge of life but have others decide over me. An end where I do not have control over my excretory function and wet my pants like a baby for example. People are petrified that their life will end as helpless and needy as it began.
This fear feeds of the imagination that human dignity is self-determination. If this is true,  we lose with our self-determination possibilities, our human dignity at the end of life and that would be the worst that one can imagine. This is why I fight emphatically against the equation of self-determination and human dignity. Human dignity is a right for respect that every human has from beginning to end, absolutely independent from his self-determination possibilities. When this point of view asserts, this may be a contribution to recognizing: The dignity of a human being is not being questioned because we are depending on help from others at the end.

 

 

 

Especially at advanced age, many people ask themselves how they can act responsibly in foresight of their end of life. What can I concretely do?

Martin Luther, as a relatively young monk composed a very beautiful script: The “sermon of the preparation to die”. There he begins very unemotionally and practical and says: First of all, pay your debts and make sure that you put your matters of inheritance in order. And when you have organized the external things of your life, then stop thinking about sin, death and the devil and focus your beliefs and your thoughts on what is promised to you. I would like to emphasize on the first part: In my surroundings, I have experienced people, who had nothing in order and left the mess of unsolved inheritance questions to their children. With the result of not being able to communicate with each other but of complete divisiveness. I find that very irresponsible. It is important to organize those matters from time to time and also if possible, sort out unsolved relationship issues and conflicts.
Next, to clear the question for oneself and in dialogue with others: How would I like to die? Presently there is much talk about advance directive and durable power of attorney for health care. I firmly say YES to the durable power of attorney for health care, to the declaration on who will decide on my behalf on what will and will not be done to me. But I look critically at the advance directive, that already wants to decide, what is allowed to be and not to be done. Where you really can only say: We really do not know! We don’t even know what is going to be medically possible then. But we can consider: Is there a person I trust, whom I can already give some information. For example, I have had a long talk with the person that has my power of attorney, and this I was able to summarize in one sentence: I want to die as naturally as possible. Meaning: As little as possible forcibly prolonging my life or forcibly shortening it. To come to an end- that is something I would wish for. And how that is going to look like, there I have fullest trust in my representative to judge the situation, so I do not have to dispose in detail.

 

 

 

Our relation towards suffering has changed in our society. In earlier times human suffering was acknowledged as something that had a purpose. Today it is normal not to suffer. Is it more difficult today to cope with inevitable suffering?

Yes, but that is not the whole truth. I can recommend a book called “Brave New World” by Aldous Huxley. In that, he imagines a world in which it is possible to eliminate sufferings, pain and all evil with the help of genetic intervention, medicinal long-term medication and pedagogically additional measures. When Huxley started writing this book, his opinion of this scenario really was that of paradise. And while writing the book he realizes: This is hell! Everything what gives us humans depth, meaning, worthiness will then be eliminated. This book can show in a very sensitive way, on what gets lost and has gone lost in a world that thinks of suffering as something that, by all means, cannot be.

 

 

 

What do we need? Do we need role models that show us how to handle suffering?

We need trust. Trust, that life carries because it is carried. Then one can say: I can handle it, it all makes good sense!” (and that is enormous trust!). I think, trust is the highest good that a society can have and what people can have in their life’s.
What we also need are talks, like the one we are having. And not only when a critical situation arises but much earlier- already in school. At the moment me and others are conducting a school project about the topic: “Human dignity at the beginning and end of life”. There we experience that the preoccupation with this topic moves a lot and releases a lot of fear.

 

 

 

In the last few years, the German Ethics Council as well as other ethical committees in Germany have addressed the topic of unbearable suffering. Have we advanced on the way to an adequate handling of unbearable suffering?

Yes, we have advanced! This process began over 50 years ago, in the year 1957, when a group of anaesthesiologists turned to the pope, Pius XII during a congress, with the question: If we relieve unbearable pain at the end of life by giving analgesic remedies (for example opiates and narcotics) with the knowledge that we may shorten life that way- are we allowed to do that? And the Pope gave a very simple and convincing answer: The intention why you do it, matters. Is it your intention to end a human life, killing someone, then this is condemnable. But if it is your intention to relieve pain and are you willing to accept that in an emergency, a human life is shortened, then it is ethically justifiable. Today, this point of view is not contested by anyone, there is a broad consensus.

Consensus also in regards to letting someone die as a wish of the patient. Therefore we need a medicine that can let go: When a life wants to end and the patient wants to die, then a new therapy should not begin and also, already started therapeutically measures should be ended. This position is really only disapproved by Peter Singer, who denies a difference between letting die and killing.

And finally we have a broad, but not complete, consensus about the denial of killing on demand. Even if there are such situations in which I want nothing more for me or others, that life is coming to an end: To let a human being die is every human beings assignation. To kill him is the assignation of no one. It is a difference like day and night. I also don’t find it fair when the dying person expects of the doctors or relatives: Kill me, I can’t go on any longer and then see how you are able to live with it.

That we have this complete consensus in regards to pain therapy and the letting die and this extensive consensus in regards to the non-acceptance of killing on demand, is a lot!

 

 

 

What remains to be done?

The question on how we can manage financially and organizationally, humanely care of critically ill and dying people in view of the growing numbers of old and needy people is still open. How can our institutions of health-care prepare themselves for this challenge even better? How are we paying the people that work in this area? Or is it a section in which complimentary work can be usefully applied? We have to say honestly, that we have not solved this yet. And the pressure of this problem is rising. The more we wait to address those questions, the more difficult it will be to find a solution

 

 

Personal Data

Wilfried Härle, born in 1941, is protestant Theologian and Professor Emeritus for Systematic Theology and Ethics at the University of Heidelberg. After his study of theology in Heidelberg and Erlangen, his career lead him to the Universities of Erlangen, Bochum, Kiel and Groningen (Netherlands). As of 1978 he was Professor of History of Theology and Systematic Theology at the University of Marburg. In 1995 he followed the offer of a professorship to the University of Heidelberg. In addition, he was a member of the Enquete-commission “Ethics and Rights of modern Medicine” of the German Bundestag and leading executive Director of the interdisciplinary Forum for Biomedicine and Cultural Studies. He is chairman of the chamber for public responsibility of the protestant church in Germany and member of the European Academy of Science and Arts.

Professor Härle has been emeritus since 2006 but his appointment book probably did not notice it yet: Lecture tours, seminars- and the work on the project “ Human dignity in the beginning and end of life” at the research center of International and Interdisciplinary  Theology (FIIT) which is lead by him. Though currently the writing desk is calling: 3 book projects need to be finished, inter alia about the topics ethics, human dignity and borderline situations. In addition is music a central theme in his life. He had to give up his years of choir singing – he just did not have enough anymore. Instead he dedicates himself to playing Cello, which he only started to learn in later life at the age of 42. And not to forget- literature: I try not to let a day go by without even reading a little belletristic!“

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Latest Revision: 2018-06-11
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