Hospice director shares what dying people regret most

On this sunny autumn morning, soothing jazz music sounds in the hall of the Lighthouse. Children’s laughter echoes through the hallway, as there is a kindergarten in the same building, but several rooms away.

The landscape is simultaneously reminiscent of the beginning and the end – Alpha and Omega – because the Lighthouse is a center for palliative care. This is where you come to die.

The sliding door opens. A nurse brings a patient in a wheelchair into the lobby. They both seem calm. You often see wheelchairs here. Many residents can no longer walk on their own.

Horst Ubrich’s office is located on the first floor. He has been running the hospice for the dead for ten years. How do you become a leader of Lighthouse? “Because the board of directors asked me ten years ago,” smiles Ubrich. It was never in his life plan to ever work in a palliative care center, let alone manage one.

A trained nurse practitioner herself, Ubrich studied health administration in St.Gallen and also completed a degree in social business administration in Frankfurt am Main.

“Today I am happy that I ended up here,” says Ubrich. He finds his work meaningful. “After the hospital odyssey that our residents have often experienced, everyone is nervous: themselves, their family and their friends. After a few days with us, the residents become calmer, although nothing changes about the tragedy.”

Ubrich continues: “Sometimes we have people here who say, ‘As strange as it may sound, that was the best time of my life.’ At times like that, a chill runs down my spine. I can’t even imagine the lives of these people.”

Since this year, the lighthouse has been rented out in a new building near the Hardbrücke in Zurich. The foundation has existed for 35 years; the previous location was in Zurich Hottingen. It is the only hospice for the dead in the canton of Zurich.

Switzerland is lagging behind when it comes to the financial aspects of palliative care, says Ubrich. “That is why I am happy that here at the foundation we can also take into account people who cannot afford decent end-of-life care themselves. We also offer a home to undocumented migrants and refugees during this difficult time.”

Palliative care is anything but cheap: a day in the Zurich lighthouse costs about 1,000 francs. Ubrich explains the cost breakdown and records the various points. Many qualified nurses, assistants, two doctors, a psycho-oncologist, a singing therapist and an art therapist work here. The residents’ health insurers and communities pay only a fraction of this. In short: it wouldn’t work without foundation money.

The Lighthouse has a total of 28 beds. Of these, 14 are intended for acute cases, with an average length of stay of approximately 30 days. The remaining 14 beds are intended for supervised long-term palliative care.

Ubrich explains: “We want to appeal to young people who, for example, suffer from amyotrophic lateral sclerosis (ALS) or multiple sclerosis (MS). Although they are sick, they are expected to live for several more years. Our goal is to offer them a home if they don’t want to go to a nursing home with 70 to 80 year olds.”

The waiting list for a bed in the Lighthouse is long. Ubrich explains that the beds are distributed based on need. The people who live in the lighthouse when Watson visits are not available for conversation. Many of them are confused and can no longer have clear conversations.

Since 2012, most Swiss hospitals have had a palliative care department. When asked what he thinks of them, Ubrich says self-deprecatingly: “I’m an older white man – we always have a lot of stories to tell. Do you have time for that?”

He elaborates and explains: “Hospital billing works according to diagnosis-related case groups. This means that hospitals actually want to discharge patients from the palliative care unit after 26 days, because the lump sum amounts per case have been used up. Then people come to us.”

It is a politically wrong approach to provide palliative care in hospitals because they are designed to be curative, that is, curative. It is also hectic in the hospital, which causes stress. Ubrich explains: “I think we need to reconsider this. Competence centers like ours could take on this work and specialize further.”

His friend’s 13-year-old daughter asked him, “You’ve been working at the hospice for so long. Have you learned to die better?” But Ubrich’s relationship with death changed little during his time as head of the hospice.

But he has set other priorities: “I now have the courage to do more things that I have actually wanted to do for a long time. For example, I bought a classic car. I always thought I had to save a lot more money before I could afford it. But then I thought, ‘What if saving takes too long and at some point it’s too late?’”

No resident of the lighthouse has ever been miraculously healed. If you come here, you die. On average there are 60 to 80 people per year. What do you regret knowing that you will die soon?

Not all dying people regret it, Ubrich says. But for those who do, the themes are always the same: “They feel they haven’t taken enough time for their families, worked too much, and haven’t maintained their friendships enough. There are also people who regret that they have lived too much for the outside. They would have preferred to do what makes them happy instead of focusing on what society expects of them.” He adds with a smile: “Some also wish they had done more forbidden things.”

Do you tend to look back on the good things or what could have been better? This is as individual as the people themselves, but the course of the disease plays a major role: “There are people who go on holiday and do not know that they are seriously ill. They come home, go to the doctor for back pain and discover they have terminal cancer. They are completely overwhelmed by the disease.”

This is different for people who have known about their diagnosis for a long time: “They can often accept the disease better and say that they have had a good life. But others are desperately clinging to their lives.”

Does age play a role? No, says Ubrich. The residents are between 19 and 86 years old. Main cause of death: cancer.

Ubrich recalls a particularly tragic fate of a 44-year-old woman who was admitted to hospice with a cancer diagnosis. This woman’s husband had also died of cancer that same year, about eight months earlier: “This woman wanted to postpone her death as long as possible for the sake of her two children, even if only for days. Unfortunately, the children were orphaned within a year due to this disease. This story still resonates with me.”