In the hospice, we fulfill people's ideas about dying with dignity. "We all do it with the feeling that we are working for something good," says about the work of the entire team Mgr. Hana Margoldová, social worker of the inpatient hospice at St. Elizabeth's Hospice in Brno. She originally worked as a nurse in a hospital, but coincidentally ended up in a hospice, where she has been working for the second year. At first, she took her place with the belief that she would still be thinking about whether she would leave the facility soon. After a week, however, it was clear to her that she would stay. She found herself at work because she is doing something that she really knows how to do and that is close to her heart. What bothers her the most is when she sees how lovingly the hospice staff cares for the patients, while the families act as if they are not concerned with the care of the dying person, and deal only with trivial matters. However, as he adds, such families are fortunately a minority.
Could you explain to me what is special about the hospice? How can this device be characterized? The idea of hospice is that every person has the right to die with dignity. Now the question is what is that dignity. We all have an idea of how we would like to live, and we try to make it possible for people here. We want them to live in peace, so that they do not experience death in pain and trauma. We try to get the patient's family to cooperate with us, so that we all participate together in what the person may still have in the last days. One of my colleagues said that "yet" here does not mean "what I can still do", but "what more I can do".
Hospice is not a dumping ground for people. It is common to think that a hospice is a facility that "takes care" of people in old age. But a hospice should be a place where a person spends only his last moments. I don't mean that he will die in two or three days. But the moment they find out at home that the patient's condition is getting worse, that the hospital can't do anything for him because his condition is approaching death, and the family feels that they can't handle the situation because the patient is in pain, suffocating, vomiting, bleeding or open wounds - hospice is here for these situations. When family members are able to transfer their "home" to their loved one here and create a "home" for them here, the idea of a hospice is exactly fulfilled.
How is it created "at home" in your hospice? People can bring home parts, starting with shelves, armchairs, rugs, flowers, dogs and canaries, but above all family, children. For me, the idea of my "home" is my family, so if I were to die here, I would like to have my children and husband with me. But everyone has a different "home". For someone, that symbol may be a cigarette, and I have no right to impose my concept of "home" on them. We respect everyone's wishes.
Who has the task of finding out what the clients' wishes are? I don't want it to sound cliche, but it's everyone's job. What is written and said everywhere about hospices is true here. Of course, this should primarily be the task of a social worker. But in reality it looks like I can sit down with that person, but I often don't know where to start. It is unimaginable for me that I would start asking him: "So, what do you like?", "So, what else would you like to experience?" or "You have two months left to live, what else would you like to do?". That seems very strange to me. Rather, I try to probe his family with subtle questions about how the person used to live, and get factual information from them. I'm trying to find out as much as possible. I keep a record of it, which I save in the documentation.
Then my colleagues come and say to me: "Look, that gentleman from number five was a boxer. Did you know that?" And for me that information is news. Those who are in close contact with them, nurses and nurses, find out the most from people. It is also due to the excellent staff who get close to the patients, they talk to them a lot. Patients know that we work in a multidisciplinary team and that we share information with each other. We meet once, now twice a week, and in the team we talk about each patient separately. It looks like a big "gossip", but it's not. We thus have the opportunity to learn the wishes of the patients.
What are these wishes like? Wishes are different. Sometimes the person wishes that a priest and family would come to him to pray together. Someone wants to enjoy their last moments and go to restaurants, so they will go to restaurants anyway. If the most important thing for someone is a cigarette, even if he can barely get up, then he should get the cigarette so he can go outside to smoke.
Or, for example, we discovered that a patient who used to be an avid fisherman would like to go fishing. So we had the rods delivered to him, he was even at home so he could go fishing one more time. One lady was in a very bad condition, but she really wanted to ride a horse. I tried to arrange so that she could at least pet the horse. Unfortunately, the lady died before we managed to transport the horse here. For another lady, we were looking for a birch grove, where she wanted to go and see.
Is it difficult to ensure these wishes of patients organizationally? There are an awful lot of employees here who are enthusiastic about their work. The hospice needs a social worker, a clergyman and a doctor, but everything rests and falls on the caregivers and nurses, because they are in contact with those people the most. It's not like I'm calling and searching for everything myself. Everyone tries to help somehow, to put something into it. Everyone knows someone somewhere who has this or that. Another large group of people who help are volunteers.
And the most important thing is that we need families for our work. We will give them the information where the birch grove is, and it is up to them whether they will take the mother there. We do not fulfill wishes at any cost. We just help to make it happen.
Is it a rule that families take care of their loved ones in a hospice? Do they have an effort to fulfill their wishes? My experience is that families are interested in caring for the patient. It happens, for example, that we have patients who are cared for by the family as part of home care, when our staff commutes to see them. The patient's condition worsens over time, they indicate that they are no longer able to take care of him at home by themselves, so the patient is transferred with the whole family to us. Such families are determined to be with that person until the last moment, they just can't handle it at home by themselves.
Many families stay here even by moving here and staying here until the patient's death. This happens most often when the parents' child dies. Another large group comes here every day, spends the whole day here, only goes back home for the night. They spend the whole day with that person. They go with him to a cultural event, give him dinner and then go home. There are also families who only go for an hour, two in the afternoon on Sundays, as they are used to from the hospital. Some families do not want to cooperate at all and go sporadically. Some of the patients lived completely alone before being placed in the hospice, so now they have no one to visit them.
Do you think that people do not want to go to patients because they are afraid of death? Or are they uncomfortable with their condition? I think there are two types of people. Some want to be with a person at all costs, and then the fear of death is not important for them. Maybe also because they know that they are somewhere where someone will support them, where someone will tell them what is happening or will happen. They are in an environment that supports them and lets them know that death is normal. They know that when their father is at his worst, there will be a caregiver who will support them until the last moment.
The second group of people is unable to overcome the fear of death. Whether the fact that they don't want to admit that their loved one is dying, or they simply don't want to be here and want to avoid it, plays a role, I can't judge. We don't push people who don't want to be there. In order to care, a person must want, be able and be able to. If one of these things does not work, then the loved ones are not here in the most difficult moments.
Let's stop for a moment at what you can offer hospice clients as a social worker. What does your work approximately look like? First, I deal with the person interested in our help. If it turns out from our conversation that he is interested in a home hospice, then I pass him on to a colleague. Otherwise, I treat a person as an applicant for placement. I forward his request to the doctor, who will determine whether he is indicated for a stay in a hospice. This means whether he has an incurable disease that threatens his life and causes him problems. Then I arrange the transfer of the patient with the facility where the person is at the moment, or with his family. I also negotiate the incomes of the patients so that they do not overlap.
After accepting a person, I talk to him a lot. We are talking about whether he has processed the various benefits to which he is entitled. I also talk a lot with the family to find out just the things we could do for them. I also prepare various exit agreements and contracts. During the patient's stay with us, I can arrange mail or various purchases. A lot of work costs me the care allowance. Getting everything done so that the patient receives it is difficult. It took a lot of effort before we managed to catch all the flies.
After the patient's death, I give the family information about what they can arrange and where, and I hand over the inheritance proceedings to the court.
Would you be able to characterize your main mission? If I were to greatly simplify it and say that the task of a hospice doctor is to relieve pain, then your task is...? It is largely based on the fact that every person has both physical and social needs, as well as spiritual and mental needs. The task of the social worker is to satisfy these needs. Unlike the nurses and nurses, I am not in that kind of contact with the patients, because of course they are with them all the time. But when he finds out that the patient needs to arrange something, be it certain doses or some other personal wish, it's my turn. I arrange everything that people can imagine that they would like. I try to convey to them what they couldn't do outside the walls of the hospice, and now they can't do it themselves. I am an intermediary between patients and the outside environment, between patients and the hospice.
How do you cope with the burden of working with the dying? Of course, we have supervisions, but they seem too official to me. In my opinion, the real life of people who are able to tell each other what they like, what works and what they don't like, what doesn't work is more important. When we sit down as a team and perhaps argue or praise each other, that is the most beneficial for us. We can speak unpretended, truly, not in official phrases. We are able to tell each other everything about work like this. When we open a problem, everyone can say something about it without having the feeling that others will slander him because he said something stupid.
And again it will sound like a cliché, but here everything is real. We all realize that patients don't have many attempts anymore, their death is approaching, so we do our best to make it good on the first try. It gets under your skin. There is no place for lying here - that's what the sick teach us. There is no point in lying to them. When a mother dies of a sixteen-year-old son, it's hard for you to say in front of him how you understand and understand her, because you can't understand this if you haven't experienced it yourself.
Is it difficult to cope with the death of patients when you have a close, human relationship with them? We are a little bit different from the norm. When a normal person hears that someone is dying, they try to move away from them, while we try to get closer to them. Of course, we try to establish contact with patients, but the most important thing is that we can say: "Yes, we did enough work and we helped."
In the team, we always discuss the patients who have died once a week, one by one, and we say to ourselves how much work we have done. For example, the patient came in arguing with his son. During the six weeks he was with us, we managed to reconcile him with his son and we also helped his wife to understand and accept that her husband was going to die. We got some benefits so that the woman was financially secure. When the patient was dying, he had no medical complications. After such a summary, we can say with a clear conscience that we did everything for him to die in peace, and therefore we do not have such a problem coping with his death.
I assume that your work still brings various ethical dilemmas. This work has an awful lot of ethical dilemmas. With every decision you have to consider whether it is ethical. How many times just any word can be a disaster if you say it in the wrong place and at the wrong time. When you say something final to a patient who is just on the way to settlement, then it's a mess.
You are always on the edge, you still have to consider everything. An example is the situation when the patient does not want to go to the shower. Should we force him to take a bath, or should we let him have his attitude? Or he doesn't want to eat. Should we feed him at all costs or wait until he eats on his own? Or shall we use artificial nutrition?
And how do you solve it? We hold the opinion that every person is an expert on himself. And every person has the right to choose. Of course, the question is whether he is able to make an informed decision. If he is no longer able to make a decision, we have to discuss it with the family. If even the family is unable to help us with the decision, then the code of ethics comes into play and the question of whether we can let a person die like this. Fortunately, communication with the family usually works, so the decision is not only up to us.
Many patients come here with the fact that they have artificial nutrition. It is then important to talk to the patients about what happens if they refuse it and if they do not receive it. Hospice is about each person deciding how they want to die. And our goal is to do everything for that person.
Author: Jana Kopřivová
St. Elizabeth's Hospice in Brno It provides comprehensive help and support to patients in the advanced and final stages of incurable diseases. Support is also provided to their close relatives. The idea of hospice care is based on respect for the human being as a unique and unrepeatable being. He respects the individual needs and wishes of the patient and emphasizes the irreplaceability of each person's family and friendly relationships. The facility provides the following forms of hospice care: inpatient hospice, home hospice, hospice counseling and equipment rental. You can find more information at http://www.hospicbrno.cz.
Photos used: archive of Hospice St. Elizabeth in Brno
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