Most Czechs wish to die at home but end up in institutions

Photo: archive of Cesta Domů

The start of November is traditionally connected with All Saints Day or Dušičky. Over the past week, Czechs have been visiting cemeteries to light candles and lay flowers on the graves of their loved ones. But many Czechs still find it uncomfortable to talk about death and dying.

Photo: archive of Cesta Domů
If you asked Czechs how they want to spend the last days of their lives, the large majority of them would tell you: at home, surrounded by their loved ones. Yet, in reality, most of them die alone, in hospitals or facilities for elderly people. Marek Uhlíř, the head of the largest hospice civic association in the Czech Republic, Cesta Domů, says Czechs don’t die the way they would like to mainly because they don’t know how to talk about dying:

“What I think, based on my long-term experience, is that Czechs have preferences about how they want to die, how they want to use health care in the end of their lives. They strongly prefer to spend their last days and weeks at home and not in the hospital but they don’t let their closest relatives know about those preferences. We could say that Czechs don’t talk about dying so they don’t die the way they would like to.”

Over the past few years, Cesta Domů has carried out a number of surveys, and the results speak for themselves. More than fifty percent of Czechs start to make serious decisions connected with the end of their lives only when they are diagnosed with an incurable disease and only two-fifths of the Czech population have ever spoken to anyone about how they imagine their own death.

“The numbers are quite simple and scary. The proportion of Czechs, who would like to die at home and not in hospitals or homes for elderly people, is 80 percent. In reality, 60 percent of Czechs die in hospitals and about 20 percent in senior living facilities and other institutions for elderly people. So 80 percent of people prefer home-based palliative care, but 80 percent will not carry out this plan, including me and you, if we don’t change the world.”

To encourage Czechs to start talking about the uneasy subject of death and dying, Cesta Domů has recently come up with a campaign called Moje smrt or My Death. An interactive web-page guides you through seven key questions related to death, such as choosing music and clothes for your own funeral or making a list of people who should inherit your property. You can keep your answers private or share them with your relatives and friends. Interestingly, the campaign focuses mainly on young people:

Marek Uhlíř,  photo: archive of Cesta Domů
“The reason is that first of all in some of the families we provide care in, it is the grandchildren who are taking care. They are people who study at high school or have a part time job, and they have the time and the possibility to spend two or three weeks to take look after someone who is close to them. The other reason we decided to focus on the generation between the age of 15 and 30, is that they are open to discussion. As they pass from childhood to adulthood they need to explore the frontiers. They are very open to a discussion about death and dying.”

But uneasiness to talk about death is definitely not the only reason why so many Czechs spend their last days in hospital despite their wish to stay at home. Palliative care in the Czech Republic is far from available to everyone. One of the main reasons why it remains largely inaccessible is that it is not covered by health insurance.

The Prague-based Cesta Domů, which is the largest organization of its kind the country, functions as non-profit organization. Its team of nurses, doctors, social workers, psychotherapists and volunteers, which provides a 24-hour health care and psychological support to the terminally ill, is largely funded by individual donations.

“These days more than fifty percent of our annual budget, which amounts to 25 million crowns (around one million Euros) is composed by individual donations. Some 3,500 people are sending us small amounts of money, around two hundred crowns. It is more stable funding than being reliable on subsidies from the state and municipalities.”

Marek Uhlíř estimates that this year, his hospice association will have to turn down more than half of the people who will approach them:

“In Prague there will be around 600 people will approach us to look after their relatives. We will be able to provide care for around 240 people. So not at all of them would be met, the capacity of the team is limited. In other regions it is obviously much more difficult. A small non-profit service in one of the small regions is obviously in a much more difficult situation. For most of the Czech citizens, mobile palliative care is still not an option that they can reach.”

Photo: archive of Cesta Domů
Despite all the obstacles, Marek Uhlíř says there has been a visible progress in the attitude of the state authorities over the thirteen-year history of Cesta Domů:

“At the very beginning the main question was WHY. We have hospitals and if people are sick they should be in hospital. Then we overcame the question of why because we were able to provide state officials and civil servants with lots of reasons including experience from abroad. Then it changed to HOW. This has also been done, because we have standards of care. So now the main question is: WHO should pay for it. The status quo is that it is the ordinary people who are not sick paying from their individual donations for those who are less fortunate. And we say: this is not fair.”

One of the main arguments that should eventually convince the authorities to include palliative care into the public health insurance scheme is the fact that it is actually much less expensive than the in-patient care in hospitals.

Irena Závadová, a doctor for Cesta Domů, also points out that Czech health care professionals still need to learn how to approach patients diagnosed with an incurable disease. The patients need to know what is going on in order to have their lives under control. Not knowing what is wrong, she says, can lead to a greater fear than actually finding out what is going on.

“Many times I feel a big relief on the part of the patient and the family that they could finally talk about these things, because they usually have great fears about them and they are not allowed to speak about them. Their doctors tell them that it is not good to speak about serious matters, so the family is blocked and the patient is blocked and the situation is really very hard for all of them, because they know, yet they can’t talk to each other.”

Over the five years of her work for Cesta Domů, Irena Závadová is used to talking about death and dying. She stresses, however, that it is definitely not the main topic of her discussions with her patients:

Photo: Barbora Kmentová
“We talk about lots of other things. There is lots of hope. Not only hope for cure, of course, but for example for another good day without pain a hope for a good day with grandchildren or with children. For me it was a big discovery that people who are dying actually need to laugh. They don’t want to be pitied; they really do appreciate when you laugh with them. Just like in normal life.”