The physicist died as he had wished. Almost to the very end, he went to the front stoop to pick up the morning paper. He sipped champagne with his wife and daughters. He listened to Chopin and Don Pasquale instead of a beeping heart monitor. No drip bottles fed tubes and needles taped to his arms. No disinfectant fouled the air he drew in his final breaths. And his wife did not break her promise.
The process of dying has begun to change in the Alpine land of Slovenia and across the rest of Eastern Europe. The physicist and his family learned that dying no longer requires submitting to the will of doctors trained to keep applying treatment—in many instances expensive treatment—even after all chance of recovery is lost. It no longer means an absence of support for family members. It no longer means they have to endure, with no forewarning or preparation, the stress of a rapid but predictable series of end-of-life events.
The person who worked this change for the physicist and his family was Doctor Urška Lunder. With funding from Slovenia's Ministry of Health and the Open Society Institute, Lunder helped found Slovenia's Palliative Care Development Institute. She is one of a growing number of palliative care advocates and practitioners in Slovenia who have, like others across Eastern Europe and the countries of the former Soviet Union, received support from the OSI International Palliative Care Initiative. The program’s mission is to improve end-of-life care for patients and their families by, among other things, educating health care professionals, making essential drugs for pain and symptom management readily available, and integrating palliative care into national health care plans, policies, and systems.
The physicist, Sergej Pahor, was at home when the lump developed in his abdomen. At the hospital two weeks later, a surgeon told his wife there was no hope. Pahor insisted on going home, despite the hospital’s resistance. His wife agreed because years before she had promised to see to it that he died at home. She turned to Lunder for help with the difficulties of dying at home.
“The first focus of palliative care is to treat the physical symptoms,” Lunder said. “We can only cut down the number of these symptoms. Only afterward can we turn our attention to the patient's fears and the problems of the family members. We can help family members speak to one another in this extremely stressful situation, to say things they need to say to one another, to bring peace.”
Sergej Pahor was coughing when he returned home. Lunder adjusted his bed, gave him a cough suppressant, and brought a humidifier into the room to reduce irritation to his windpipe. She brought in a chair with a toilet, because he was so weak. She began administering painkillers.
For several days after coming home, Pahor got up and went to the front door. He read the morning paper. He walked to the kitchen. By the last Saturday, both of his grown daughters were home. At times the atmosphere was tense.
“They would settle down whenever I entered the house,” Lunder said. “I was a neutral person, not a character in their personal narratives. I knew there had been difficulties. I asked Sergej whether he was satisfied with his life. He said he had been professionally but not personally, and I could feel how strongly he kept things under control.”
“I deflected his attention from meaningless details to his family members. I asked him to reflect on his successes. After a while, he mentioned a textbook he had written, and how proud he was that his artist daughter, Marijana, had designed the front page. He said he was happy to see everyone together. He was content. He relived memories about difficult times. He cried. He poured champagne for them all, and managed to take a sip.”
By the next Wednesday, the end was near. Pahor was delirious. He was climbing out of bed. He was trying to walk around. He was taking off his pajamas. Lunder administered sedatives. And he slept on his last day until after four in the afternoon. His wife noticed a change in his breathing and called Lunder. “He is now leaving you,” Lunder said. Shallow breathing started. And Lunder told his wife to play the physicist’s favorite music. First came a Chopin, then Don Pasquale.
“We were so peaceful,” Lunder said, “so inspired from the moment. Mrs. Pahor brought out the champagne they had opened earlier. Each of us took a glass.”
After the opera ended, he opened his eyes for a final time. He took his last breaths. His hand dropped.
Sergej Pahor died at home. His wife, with the help of the right doctor, had kept her promise.