Anyone in Serbia who has encountered the problem of taking care of a patient in terminal phase of the disease he knows that the temptation is too difficult. Although this topic is extremely challenging and painful, it must be written and talked about, mostly because the level of suffering and torture, how sick people, as well as those who take care of him, immeasurable. Unfortunately, in Serbia, palliative care (care for the terminally ill) remains stuck at the crossroads of state hospitals, private centers and family home care.
According to the definition, palliative care is comprehensive (health, psychological, social and spiritual) care of patients who have an incurable disease. The goal of care is to relieve pain and improve the patient's quality of life. At least that's how it should be in theory. The practice in Serbia is far from this definition. Those who "bit that bullet" know that carrying this cross requires indescribable strength, love and sacrifice.
THE DIFFERENCE
Each country has different forms of this type of care. When it comes to palliative care conditions, the United Kingdom is by far the best. The UK is followed by Australia, New Zealand, Ireland, Taiwan and South Korea. Attention is directed towards combining physical, psychological and social care. In addition, effective pain-relieving drugs are readily available in these countries to help patients spend the twilight of their lives relatively comfortably. Considering that it is important that patients feel as good as possible, the emphasis is on providing care in the place where the patient lives - in their own home, nursing home or family home. In addition, there are specialized clinics, hospices and other institutions that help and work to make the patient suffer as little as possible (mental and physical). There are also programs that help make your last wishes come true: to see and touch the sea, to visit a dear friend, get unlimited access to your family, hang out with your pet... The staff is always available, friendly and good-natured, ready to help and relieve pain.
How are things in Serbia?
Anyone who has had this kind of situation at home knows that Dante forgot to describe another circle of hell intended for sick people in Serbia who need palliative care, as well as their relatives. On paper, that is, when you search the Internet, things don't seem so bad. However, in reality it is different. There are only a few options for helping these patients and their families: private care, state institutions or family home care with the help of only a few volunteer associations.
PRIVATE PALLIATIVE CARE
Those who have money have no worries. In Serbia, there are specialized clinics where you can buy a hospital day for a paltry 20-30.000 dinars. In addition, the services of a doctor, the administration of therapy (the administration of an ordinary injection is about 2.000 dinars), additional analyzes (ultrasound, magnetic resonance, scanner...) are paid for several tens of thousands of dinars. If you want your own personal nurse, you have to add about 10.000 dinars per day. If you want to spend the night with your loved one, you have to spend 15.000 dinars at one of the private clinics. It doesn't say what you get for that money, except for a few more hours of presence. An opportunity to be with someone you love who is leaving you. And maybe a glass of water?
When everything is added up, one day of dying in Serbia costs quite a bit.
Another, slightly cheaper option is a home. You will need a few days to visit them, ask if they know how to give therapy, see what the accommodation is like, whether they take care of bathing, feeding or, if necessary, feeding the sick person, as well as everything that a seriously ill person needs. Those who have had the opportunity to experience care in homes do not have many words of praise (see box 1).
In the past few years, the public has learned that there are homes for the elderly and the sick that were illegal, where residents were abused and burned with the living people in them. And that was not enough to shut down those who do not have all the necessary checks, personnel, infrastructure and conditions to take care of the most sensitive categories of people and patients.
One of the possibilities is a private nurse or a woman who will take care of the patient. If you can find the right person who will follow your instructions and not charge like a Nobel Prize neurosurgeon, you've succeeded. Provided, of course, that he stays in that job. Of course, this type of care also requires financial resources, and not small ones.
photo: jadranka ilić / tanjug...
STATE PALLIATIVE CARE
Although you can find several government clinics on the Internet that accept dying patients, in a few calls you will realize that not everything is as it seems.
The first line that provides help is home care, which goes out into the field and draws blood, performs basic examinations and provides therapies. Appointments are made in advance, so acute conditions are a big problem. Sometimes even elementary communication fails (see box 2).
When it comes to hospitals, only a few clinics receive patients. Despite reports that the hospital in Batajnica, which received patients during the corona virus, has been repurposed for the most seriously ill patients, no one answers their phone number. The truth about the method of reception can obviously be found out only by those who have the conditions to go there and inquire live.
In other centers in Serbia that receive the most seriously ill patients, it is necessary to obtain extensive documentation, i.e. a death sentence in which it is written that neither the primary oncology institution nor the home care of the health center can take care of them anymore. The patient is admitted for two weeks in order to "stabilize the condition". During that time, the housemates can have a little rest and relaxation. To prepare for the most difficult battle, which they already know they are losing.
HOME PALLIATIVE CARE
Those who are forced to take care of a seriously ill patient alone know that it is an extremely difficult undertaking, both physically and mentally. Therapy, diapers, pain, tears, physical deterioration... all of this is the task of the household, as they watch their loved one go down the road of no return. As it becomes more difficult, the strength is less and less, but love and will make these people go forward. Although the battle is lost, they fight for another day, hour, minute. Seas of tears wept into pillows, much anger at fate, many sleepless nights. Absorbing every moment, even if it's this bizarre, because it will be the last memories of the shell that remains, and which still hides the person we love.
Our country provides a paid month for the care of a close relative. This can eventually be achieved by those who are employed in state institutions. Those who work for a private company know very well that they can possibly get a few days off right before the end of the battle. Cruel, isn't it? But that's the reality we live in.
VOLUNTEER SERVICES
People who believe that palliative care is a human right, not a luxury.
BELhospice is a team that provides free palliative care in the home of patients in the territory of Belgrade, to adult oncology patients and children with serious, life-limiting diseases. The team of this association consists of professional people, from doctors, through nurses and caregivers, volunteers, to coordinators and PR, who, together, try to ease the suffering of patients and their families. Available, pleasant, with an experienced eye, they know how to notice what the family does not see that the patient needs.
At the moment when, three winters ago, the homeless Rada Drini (whose suffering shook the whole of Serbia, and about whom "Vreme" wrote) was terminally ill, BELhospice came to the rescue where even the state authorities in charge of such cases did not. They brought diapers, an anti-decubitus mattress, the doctor examined him and advised on therapy. They provided help in a way that many do not even get from their own family.
Although they visit the patients all day, they organize socializing for them, and excursions for the more mobile ones. They also opened a day care center in Mali Mokro Lug, where the sick can come and spend time, talk to a psychologist or a clergyman.
And to round off this painful and difficult story, with the desire to raise palliative care in Serbia to the highest possible level. Although many do not even want to think about this topic, we must all be aware that the disease does not discriminate between gender and age, hair and children and the elderly. This is why we all must first raise awareness and do whatever it takes to make things better for these patients and their families. No matter how little it is, if it's the most you can do, it's enough.
So, can a serious patient die with dignity in Serbia? If you are lucky enough not to know, you must find the answer to this question within yourself and in these lines.
Home beauty
Our interlocutor who, not seeing a way out, had to put a sick sister in a home, shared her experience with us, but wanted to remain anonymous. "At one point, we couldn't take care of my seriously ill sister anymore. We found a home relatively close to home. It wasn't too expensive either, but... My daughter made a list - which drugs are given and when - and handed it to the staff at the home in a prestigious part of the city. We explained to them that painkillers were extremely important because she had already had serious attacks. When we visited her two days later, she was disheveled, unbrushed and in pain. The lady who was in the room with her she told us that the staff was yelling at her. The only conclusion was that she was being mistreated. On the next visit, she had not been changed for who knows how long. The third time we came we found out that the doctor who takes care of the patients is actually an orthopedist and that they have a doctor available at the first meeting staff and begged them to they don't scold her and don't shout at her. In addition to that terrible scene in which the sick old woman begs for mercy, we learned that one day the employees and owners went to a celebration (to another home outside of Belgrade), while in the home where my cancer-sick sister was, only the hygienist was left, who was in charge of everything - from washing the bathroom to distributing food and giving therapy. When we heard and saw all that, we literally kidnapped her and took her home right away. If we had the strength, we would have sued them", says BM
Conversation
BM's daughter recounted a dialogue with a doctor from the Health Center in Brograd. "That day, my aunt was in severe pain. After giving her all the medications according to the pain control protocol given by the doctor, I didn't know how to help her. I called the emergency room first. They told me that the case was not for them and referred me to home care at the local health center. I called them and they referred me back to the emergency room. That ping-pong went on for a while until a dialogue with the home care doctor happened:
"Doctor, my aunt is an oncology patient. She is in terrible pain. I gave her xxx, xxy and xxz of the drugs and she is still in pain. May I also give her an injection of the drug yyy?"
"We can't come today, we can give an order for tomorrow."
"But she doesn't hurt tomorrow, she hurts now."
"You understand, we can send a team tomorrow."
"Do you understand that she is crying in pain?"
"But now it's almost the end of business hours."
"Okay, can I give her medicine yyy?"
“We don’t have a cure yyy.”
"I have. May I give her yyy, in addition to all the medicines I mentioned?"
“But we don’t have that medicine.”
In shock, I asked her if she was even a doctor. She muttered that she was. I insisted that he tell me his name and the instructions for giving the painkiller. She told me I could give her an injection. After that, the pain went away."
