“The rest of the life must be as good as possible-” Dr Vladan Milošević
Why palliative care is not about dying?
Taken from Magazine “Vreme”, september 2016.
For Svetlana G. the hell started when her immobilized mother, aged 90, was discharged from the hospital. The wounds from lying in bed opened immediately. In the fifteen days it took to complete the formalities and get the family’s help, almost all the money goes to the doctors’ daily visits. But the doctor is there for an hour. For the remaining 23 hours the family is with an immovable, in this case,conscious person. Svetlana G. herself is not of perfect health, and the stationary old woman needs to be lifted, dressed, overturned in bed, her diapers changed and, sometimes, several times a day to change the bed sheets. And changing the sheets beneath an immobile person is a skill acquired through long exercise. When she doesn’t work, she washes laundry. When she is not doing laundry, she prepares meals and feeds her mother. When she doesn’t prepare meals and is not with her mother, she goes to the store to return as soon as possible. Once or twice a day, though without any medical training, she cleans wounds and dresses her mother. After 15 days, the nurse begins to come twice a day. The help is enormous, but 22 hours a day the family is with a motionless, conscious person. Physical and psychological torture compete in intensity. “What consumed me,” says Svetlana G., “was my mother, who looked at me so distraught, thinking that I wanted her death?” Hell lasted for months. Two years later, Svetlana is unable to speak without choked up. “But what happened to me is not the worst at all,” he says.
What’s the worst?
A quiet transition to the other side:
The writer of these texts and his father were more fortunate. When we lost touch with our father, there was a melted body left on the bed that was constantly crying. Although he wants water, we are not able to quench his thirst, we push his wet handkerchief into his mouth, and changing linens becomes an impossible task. A doctor friend tells me that there is a palliative care ward at the Ćuprija’s hospital. I have no idea what palliative care is, but I realize it is a place where people are taken away to die. I’m going to the hospital with my sister. We are received by Dr Vlada Milosevic, founder and head of the department, a calm forty-year-old. “This is not a ward for dying, as people say,” the first thing he tells us, “but a place where people are provided with a better quality of life in the final stages of illness.” I’m not in the mood for philosophizing, but I’m listening, I have nowhere to go. The doctor talks little, it’s our turn now. We say things are right and we hand him the documentation. “I’ll talk to you in two hours,” he says. Four hours later, his father is in the ward. The rooms are clean and bright. The nurse works quickly and efficiently. (Later, as I was visiting my father, I saw her change her bedding under a motionless body. She was doing it rehearsed, quickly and without anxiety. She once had to change the bed lining she had just put. Where the ordinary staff world would go crazy with anguish, she commented silently, probably reading despair on my face: “happening” and new bedding for this hour was under my father’s body.) Another encounter with the doctor. “This is the final stage of the disease,” he says, “the question has been given, but we cannot know in advance how long it will last.” “Is your fattger in pain?” I ask, because his sobbing does not stop. “Probably,” says the doctor, “but we will help him.” That night, for the first time in a few weeks, I slept the whole time. The next day I find my father who is not sobbing, shaved. The skin on his face was no longer yellow, like wax, but had a natural color. The nurses are acting fast. Only now am I aware of the silence. Only a moan is heard, but it’s not terrible. People die, yes, but they die without pain, without that terrible suffering, they die as humans. After a few days, his father switched sides. In peace.
We are talking with Dr. Vladan Milošević at a Belgrade private hospital. Since the beginning of 2016, he is no longer in Ćuprija, but we will talk about it later.
“I’m amazed that my fellow doctors don’t even know what this is about. And they talk about the ward, but nothing is more wrong than that. The right to a dignified death is actually always a right to a dignified life.”
Practice and ignorance:
Dr Milosevic is an anesthesiology specialist with reanimatology and intensive care subspecialist for pain medicine. Under the auspices of the European Union, he attended and, within two years, completed his education as part of the Palliative Care Development project. This is a field of medicine that Dr. Nataša Milićević, with several other colleagues, practically introduced into our health care. Their idea was to create a palliative care network in about fifteen health care facilities in Serbia. The proposed formation of wards in the Ćuprija’s hospital has received the support of the administration, the appropriate space has been determined, some of the funds have been received from the project, some of the money has been provided by the administration, so that, over the next two years, almost 80 percent of the funds would have been received from donations.
“Beds, bedding, blankets, medical supplies, televisions, lamps, literally all of this came from donations from citizens. I was not interested in the motive of the people, but what they could do for the department. You know, I kept for myself only part of what they were people brought in, countless money, too – many people from the Ćuprija region whose relatives work abroad – I probably wouldn’t have gone bad to measure the pressure, to the beds and the EKG apparatus. It happened, for example, that the hospital administration could not approve eight new bedding, and, you know, our patients change their sheets, literally, three times a day. Someone is lying on the ward and buy us 30 sheets.
Along with the practice, there was also staff training. Palliative care teams are not only made up of classic hospital staff, doctors and nurses, but also psychologists and social workers and part of the clergy. Only in this way can the full scope of palliative care be provided, “says Dr. Milosevic. At the end of the two-year project, the ward had eight beds and the hospital became recognizable, a rare option in our country. It was evaluated as a model of good clinical practice that can be used by other palliative care units for education and counseling.
“Patients coming to the palliative care unit are suffering from an incurable disease, but of course no one can say in advance how much longer they will live. That remaining part of life should be of the highest quality to both the patient and his family. That is, therefore the meaning the palliative treatment. Not treatment in the terminal stages of the disease, but the improvement of the quality of the rest of the lives of patients suffering from incurable diseases. Of course, these are not just malignancies. We have serious neurological diseases, autoimmune diseases. Palliative care involves, say, a specific diet, specific pain management, animation. You have patients who are employed, play games, socialize, work with animators, choreographers. Sometimes the effects are amazing. You see someone left with maybe a month left to live, and that month is filled with rich content. Not all patients, of course, are in unbearable pain. It sounds amazing, but that time can be a huge gain for both the patient and his family.
Dr Milošević points out that, due to lack of education in this area, palliative care teams often encounter misunderstandings of patients and misunderstandings of colleagues.
“It is not necessarily a matter of the bad intent of colleagues, it is simply a misunderstanding and ignorance of the meaning of palliative care. It is not a matter of the patient in the final stages of an incurable disease simply being ‘removed’ from another ward to a palliative care ward and dying there. There are very clear criteria and clear procedures for who can be admitted to the department. Compliance with the rules is the only way to avoid possible abuse. When some data are obtained from the family of the patient or with the patient himself, they are presented with the conditions and when a common language is found, the patient can be admitted. We do not know, of course, which patients are eligible, so the functioning of the whole system is crucial.
The main “researchers” of patients are health centers and patronage services, therefore primary health care. We, from the so-called secondary area, in the wards, do not know, of course, which patients are eligible. The functioning of the whole system is therefore crucial. The project, for example, envisages that some 40 vehicles, with special designations, serve only such patients, because the need for palliative care is enormous. At the level of Serbia today, there are around 150 to 200 palliative care beds, and at least 350 beds are needed due to a drastic decrease in the quality of life and an increase in malignancies. ”
We ask Dr. Milosevic what happened in Ćuprija and gave up from one good department, into which he has invested several years of professional life?
“Hospital administrations change frequently, and with the last one we have not found a common language. I cannot think of rational reasons why we not only received support but encountered undisguised obstruction. For example, the administration withdrew two from other trained nurses to other departments. It is important to say here that the work of nurses in such classes requires special training on the one hand, and on the other hand, both physically and mentally, it is extremely difficult. In addition, there was an opportunity for a young doctor who was interested in palliative care to specialize in this area, but there was nothing to it. Paradox is much greater, the ward only survived, in ways I have already described. The hospital was spending a minimal amount on us, and the effect was, if you will allow me, negligible. My stay at the Ćuprija’s hospital, therefore, made no more sense because I always stuck to the profession, As far as I know, the department itself has lost its purpose today, primarily because of the need for a new boss and, consequently, the indiscriminate selection of patients who are unable to provide adequate palliative care. From there, the whole process does not have to be abused. ”