Dying Without Dignity

Three in four Czechs languish in institutions before dying, say health-care workers

By Kristina Alda

Jaruska Hlavackova, who has dementia, may not remember how old she is or how long she’s been at the retirement home, but she does know one thing: She doesn’t want to be there.

Sitting in an empty wood-paneled dining room, she spends her day doing crafts, cutting out pictures from magazines and pasting them into a collage, then peering at them through her enormous glasses. Like the other 258 residents at the home, she must find a way to fill her days without the company of family members. Visits to the home are rare. On a good day, about 50 visitors make the trip to the city-run facility in Prague 6 near the Dejvicka metro station.

Hlavackova is not alone. According to a two-year study published by the hospice organization Cesta domu, up to 75 percent of all Czechs spend their final days in hospitals or retirement homes. The same study shows that 80 percent of the people would prefer to die at home, among family, if given the choice. Furthermore, 70 percent of health-care workers questioned in the study said they think care for the terminally ill in the country needs to improve. Most health-care workers say they don’t find the study’s results surprising.

Eva Kalhousova, the director of the retirement home, said the biggest problem in the care for the elderly is the attitude people today have toward death and aging. “We regard old age as a disease. It used to be normal that a family would look after a dying grandmother. Now people are afraid of death.”

“Nearly all of the residents in this home die without the presence of their relatives,” she added.

Cradle to grave

The situation in other European Union countries is slightly better. In Germany and in Holland, over 30 percent of the population dies at home. The biggest difference is in palliative home care. The Cesta domu study shows that there is a growing trend in Europe to care for the terminally ill at home. In the Czech Republic this is virtually unheard of.

Martina Spinkova, the director and co-founder of Cesta domu, says that 40 years of communism are to blame for the current attitude toward aging. “People became used to the idea that the state would take care of them from cradle to grave,” she said.

Hospices could help bridge the gap between health care and home care, according to Spinkova. “Families should play a bigger role,” she said.

Dr. Hana Krautova, a senior consultant at a sanatorium at Vinohradska hospital for people with long-term illnesses, agreed.

“Children today don’t feel responsible to take care of their sick parents,” she said. “Communism has left a mark on everybody. It will take at least two generations before the family regains the status it used to have.”

But Martin Kreidl, a sociologist at the Sociology Institute of the Czech Academy of Sciences, is less optimistic. He sees the decline of the family as a growing trend in the Western world that is linked to the rise of individualism and consumerism. “The role of the family unit has been declining over the last 200 years,” he said.

Kreidl says that the communist regime has left an enduring legacy when it comes to the attitude toward the elderly. “Under the communists, the preferred method was to put anyone who was no longer useful out of sight,” he said. “In those days, the population was regarded as little more than a work force.”

So what exactly needs to change to improve care for the aging? The attitude, above all, say those who work with the elderly. “If the society’s attitude toward the aging process doesn’t change, we [the doctors] can’t change anything,” said Krautova.

According to Health Ministry spokeswoman Aneta Kupkova, improving care for the elderly is not so much a question of funding as of reorganizing the structure of the health-care system. “The number of hospices and hospital beds in hospitals for long-term illness has to increase over the next few years,” Kupkova said.

There are currently 400 doctors for every 100,000 people in the Czech Republic. This is almost 10 percent below the EU average, according to a European Commission public-health report. Meanwhile, the EU’s Dutch presidency will hold an informal council in September with special emphasis on health-care issues related to the elderly.

Kupkova said another problem in this country is that medical students here do not like to specialize in gerontology. A dearth of gerontologists will become especially problematic as the average age of the population continues to climb.

A need for home care

One possible solution would be to strengthen home care, according to Kalhousova, who knows from experience that there is growing interest in this type of care. “Many people put their relatives in a retirement home because they don’t know how to deal with the situation. If there were more options out there, like home care, people would use them,” Kalhousova said. “People age much faster once they’re put into a retirement home,” she added. “At home, they feel like they still have some role to fill.”

A move toward a home-care-based system would be better not just for the elderly, according to Spinkova. The whole family would benefit. “Dying used to be considered to be a normal part of life,” Spinkova said. “Taking care of a dying relative can help bring the family together and better prepare them for dealing with the loss.”

This article originally appeared in The Prague Post on July 29, 2004.