What has been your most rewarding experience during your career in palliative care?
Most recently: We have introduced a new form of teaching for the medical students at the University of Bonn. We use actor patients, and other innovative learning methods and have the goal that the students learn something about the attitudes and know how to treat the 10 most common symptoms. And we teach multiprofessionally, with physicians, nurses, psychologists, a philosopher and even a dancer in the team. With the new concept, our rating in the students’ evaluation has gone from the bottom row to the top place in two years, and I have been awarded the University’s teaching prize this summer term. Glorious feeling for the whole team!
What is the most challenging situation you have faced in your professional life?
There was a patient some years ago who had already become a member of Dignitas, the Swiss organization for assisted suicide. We had some talks, and he agreed to come to our unit – to try out what palliative care had to offer. He was very straightforward and described clearly why he wanted assisted suicide, so that he would avoid losing his autonomy and becoming dependent on others. He was upset that this is not possible in Germany, because he would have to travel to Switzerland while still fit enough to travel, and thus would loose some days or weeks of life.
I thought this is really a good indication for palliative sedation– he could stay awake and well until the last moments of life, and then could get palliative sedation until death. No time lost. But the suggestion really upset him, and he explained that what he feared was loss of control, and if sedated, he would loose control completely! We had long discussions, but did not find any common ground, and in the end he left our unit, and I was informed two weeks later that he had gone to Zürich and had performed assisted suicide. I still regret that we did not manage to find a solution that he could accept, and I think that we have to develop interventions against the feeling of loss of control for the small group of patients with similar problems.
Aside from patient care, there was more than one challenge when team conflicts exaggerated, and the team feeling that we had built so carefully for such a long time got lost so quickly. Nothing is more challenging than bringing it all together again and making the team strong and united again.
Can you tell me about the most unusual thing you have ever had to do in your job?
There are a number of things that I would not have thought to do a few years ago, but travelling to some rural area in Turkey with a patient seems to top the list.
The patient’s husband had worked in Germany for many years, and thus he and the wife had German health insurance. They lived in Turkey since his retirement, but came to Germany every year for a health check. This time metastatic breast cancer was diagnosed for her, and she had already spent half a year in different hospitals before she was transferred to our unit as the cancer has proven to be uncurable. She told us that her main wish was to go home to Turkey and spend the rest of her days among her children and grandchildren.
The family organized the transport with Turkish Airlines, and I went with the patient to provide medical assistance. This was needed on the flight, as her oxygen saturation had dropped rather low. I did inject enough morphine so that she was not breathless, but still was worried a lot about her condition, until at some time she pulled my sleeve and said: “Don’t be afraid, doctor, I will not die”. Which she didn’t.
We arrived in the middle of the night in Ankara, had to drive another 8 hours through the back streets of rural Turkey to her home (at one point the ambulance driver nearly fell asleep, and the son of the patient took over for the rest of the way). We arrived at the crack of dawn, and I still remember her worn and tired but entirely happy face.
Next day the family rushed me to the next town, half an hour away, as this was where the nearest local doctor was. He would never do a home call, but demonstrating to him that the patient was so sick that a doctor from Germany had to accompany her was enough for him to promise to prescribe the opioids she needed.
I arrived back home on the next day. The family came to our unit repeatedly and reported how she was, until she died four weeks later in the midst of her large family. What I found most astonishing about the whole endeavor was: Even though I was the one who flew with the patient, the whole team shared the experience and the feeling of success, as everybody had contributed to the travel preparation, and everybody hoped that the patient would arrive home safely. This did a lot for our team!
You have been instrumental in drafting and mobilizing support for the Prague charter. What do you hope to happen following the presentation of this document at the European parliament?
The Prague Charter is just one step in the larger advocacy efforts to acknowledge access to palliative care as a human right. I would like to see the Prague charter included in subsequent work, and I hope that the recommendations will be taken up in guidelines and advocacy papers.
I would also like to use the Prague Charter to get some members of the European parliament as champions for palliative care. I would like to see a group ‘MEPs for palliative care’, similar to the ‘MEPs against cancer’ group that already exists. This would require a lot of work, which EAPC cannot do on its own, and I hope that the Prague Charter can be the first step towards that goal.
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