Forgotten by the system and left in the hands of family
Without palliative care, people with advanced chronic and malignant diseases rely entirely on their family members.
In his early 20s, Ismet Pajaziti began working at Prishtina’s iconic landmark, the Palace of Youth and Sports, commonly known then and now as Boro-Ramizi. He was hired as a security guard in the building, which had opened its doors just five years earlier, in 1977, becoming one of the capital’s most renowned structures.
At his new job, he worked long hours — often up to 12 hours a day — with very few days off. However, the demanding schedule did not diminish his love for the job, which he recalls today with great nostalgia.
“I never got tired. If they asked me today, I would still come back,” said Pajaziti, who is now 66 years old.
However, in 2016, at the age of 58, Pajaziti began experiencing health problems. He started having difficulty breathing and soon needed an oxygen machine. Initially, the early signs of illness did not stop him from continuing his exhausting work — patrolling the stadium and the shopping mall for 12 hours a day without rest.
“Before, I worked 12 hours and used the oxygen machine for only three,” said Pajaziti. However, after COVID-19 affected his lungs, he had to retire early in 2021.
“August 25 of this year marks three years since I’ve been in isolation,” he said.
Since then, Pajaziti has breathed through a nasal cannula connected to a long plastic tube attached to an oxygen machine. People with chronic lung conditions, such as respiratory insufficiency, often rely on oxygen delivered to their bloodstream through a nasal cannula connected to a portable oxygen concentrator. This device extracts air from the surrounding environment and converts it into condensed oxygen.
The placement of these devices in Pajaziti’s apartment — one in the living room, one in the bedroom and one in the bathroom — also limits his space of movement. His days pass slowly, divided between time spent in front of the television and gazing at the world from a small balcony overlooking the street, accompanied by the voices of children from the school in front.
“Without the oxygen cannula, I can stay for 40 minutes, an hour at most. When I walk without an oxygen mask, it drops to 65%,” said Pajaziti. In healthy individuals, normal blood oxygen levels, or oxygen saturation, range from 95% to 100%. When levels drop below 90%, it signals that the body is not getting enough oxygen. A saturation of 65% indicates a critical lack of oxygen.
The limited movement due to breathing difficulties has brought new health problems — he now also experiences fatigue and numbness in his legs. The lack of an elevator in his five-story apartment building in the Taslixhe neighborhood, across from the Gjergj Fishta primary school in Prishtina, further limits his mobility and increases his isolation.
“At least when you’re in prison, you know you’re in prison and can’t get out,” he said.
Due to his health condition and mobility restrictions, he receives home care services provided by the Family Medicine Center (FMC) XI in Prishtina. Almost every week, Pajaziti is visited by a medical team of family medicine specialists, general practitioners and nurses.
They measure his blood pressure and oxygen levels and administer corticosteroid injections to reduce lung inflammation and ease breathing.
Every other hour and day of the week, his wife, Salihje Pajaziti, who is also 66, takes care of him. They live alone and have been married for 44 years.
“If I hadn’t had my wife, I don’t know what I would have done. I would have died alone,” said Ismet. “When someone visits us to relieve our boredom, we talk about the conversation with them for another two weeks.” Next to him, Salihje nods.
Dealing with this health condition is overwhelming not only for patients but also for the family members who care for them. The need to assist with basic activities without external professional support creates social isolation and contributes further to dissatisfaction and fear.
“For a woman, it’s very difficult to be both a woman and a man myself. I keep fearing, ‘Will he die now? Will he die now?'” said Salihja as she rubs Ismet’s swollen and heavy legs with both hands. “In the bathroom, when I place him to give him a bath, he doesn’t remove his oxygen [machine]. I tremble when his oxygen level drops to 60.”
The noise of the oxygen equipment, echoing around the four walls of the room, along with the cannulas in his nostrils and around his face, make it difficult for Ismet to sleep.
Ismet Pajaziti’s disease is classified as a chronic non-communicable disease (NCD), which, according to the World Health Organization (WHO), are conditions that tend to be long-lasting and generally progress slowly. Additionally, people with NCDs can advance to terminal illness when their condition worsens and curative treatment is no longer effective. Therefore, individuals with malignant diseases and advanced chronic conditions such as cancer, heart, respiratory, or neurological diseases, may benefit from palliative care. Palliative care can be provided anywhere — at home, in hospitals, or in specialized institutions.
According to the WHO, palliative care aims to provide comprehensive care for patients whose disease is not responding to curative treatment. The four key components of palliative care — control of pain and other symptoms, and psychological, social and spiritual support — aim to enhance the quality of life for patients and their families.
There is no dedicated palliative care unit in Kosovo. Only the medical and therapeutic aspects of palliative care are provided through the home care service. This leaves hundreds of patients with advanced malignant and chronic diseases that have no cure completely in the care of their families.
Lack of law on palliative care leaves burden on families
Every day of the week, the home medicine service team, wearing uniforms labeled “Chronic Service,” visit citizens who are bedridden or immobile due to their health condition. In Prishtina, this service dates back to 1986 as a separate unit within the Main Center for Family Medicine.
The medical team provides services to patients, including therapy visits, measuring glycemia and oxygen levels, checking vital parameters, assessing neurological reflexes, performing catheterizations and dressing, cleaning, or bandaging wounds. They serve all villages and neighborhoods of Prishtina from 7 a.m. to 7 p.m., including weekends and holidays.
In addition to patients with malignant and chronic diseases, the service team also cares for patients with diabetic foot conditions, lower limb amputations, surgical interventions, injuries from accidents and specific developmental needs.
During July and August 2024 alone, the number of visits to this service reached 200. The high demand from citizens has overloaded the four medical teams, which operate in 12-hour shifts. As a result, visits are brief, and for patients with malignant diseases or advanced chronic conditions that require comprehensive palliative care, only the medical component — primarily therapy administration — is provided.
Health professionals use an official classification system to assess a person’s level of functioning. If individuals cannot use the toilet, eat, dress, bathe, get out of bed or rise from a chair and walk independently, they lack the basic ability for physical independence. Similarly, if they cannot shop, prepare food, maintain their home, do laundry, manage medications, make phone calls, travel independently, or handle their finances, they lack the ability to live safely on their own.
A patient’s level of functioning determines the appropriate level of palliative care, whether it involves coordination with primary care providers, care at the secondary hospital level or hospice care. Hospice is a 24-hour care center staffed by nurses, doctors, religious counselors and social workers, dedicated to supporting individuals with terminal illnesses whose life expectancy is typically limited to three to six months. In such cases, the primary goal is to ensure freedom from pain and distress while preserving mental awareness for as long as possible.
In Kosovo, palliative care is regulated by Administrative Instruction No. 04/2020 and is provided through primary health care institutions. The Ministry of Health, via the Specific Health Grant, allocates funds to municipalities specifically for palliative care. However, beyond this instruction, there is no dedicated law governing palliative care, making Kosovo the only Western Balkan country without such legislation.
This law would regulate the provision of palliative care not only at the primary level but also at the secondary and tertiary levels. The Ministry of Health told K2.0 that, although palliative care is not specifically governed by any law, this does not mean healthcare institutions are restricted from offering such care. “On the contrary, they are encouraged to provide palliative care to our patients,” the ministry’s communications office stated via email.
The lack of legal regulation for palliative care undermines its delivery — which should include not only medical care, but also support from psychologists, psychiatrists, social workers and religious counselors — leaving close family members as the sole support system for patients.
Such is the case of 50-year-old Kujtim Sahiti, who was diagnosed with multiple sclerosis 13 years ago. Rapid muscle weakness and difficulties with coordination and balance, the primary symptoms of the disease, gradually forced him to transition from using a cane to relying on a wheelchair.
In multiple sclerosis, dependence on another person is inevitable and essential. Sahiti receives home care services, including infusion therapy for infections or pain. The responsibility for the rest of his care falls to his 77-year-old mother, with whom he lives.
“My hands are numb and weak, especially my right hand and wrist. My hands are very thin,” said Sahiti. “I have trouble swallowing, I can’t hold a spoon with my left hand. My mother feeds me, washes me and moves me from the bed to the wheelchair, and from the wheelchair back to the bed.”
Meanwhile, pain, chronic fatigue and leg muscle cramps are constant symptoms. Sahiti says he spends most of his time in bed. Due to prolonged immobility, he has developed skin wounds from decubitus, also known as pressure ulcers. These occur when an individual remains in a fixed position for an extended period, causing pressure on specific areas of the body that can narrow blood vessels. Without adequate blood circulation, tissues begin to deteriorate. The appearance of decubitus in immobile individuals is common and can be accompanied by pain, burning or discomfort.
Additionally, Sahiti experiences urinary and fecal incontinence, which is the loss of muscle control over his bowel and bladder functions. As a result, he needs to wear diapers. To avoid bladder overload, he uses catheters to help remove urine from his body in a controlled manner.
According to the WHO, although there is currently no cure for multiple sclerosis, treatments can help manage symptoms and improve the quality of life for patients. In multidisciplinary palliative care, the role of the physiotherapist is crucial for patients with multiple sclerosis. As the disease progresses, a physiotherapist assists with exercises to maintain strength, as well as using massage and other techniques to manage muscle spasms and reduce pain. Physiotherapy sessions also help prevent pressure ulcers, by encouraging frequent position changes while in bed.
Deteriorating physical abilities have made it impossible for Sahiti to move without a wheelchair and have necessitated the adaptation of his home environment. These adaptations include ramps, a railing near the ramps, a makeshift bathroom, a wash cart, wide doors and an electric wheelchair. All were made possible through the efforts of neighbors and the community, who raised funds.
Taking care of patients with advanced malignant and chronic diseases often requires significant daily financial expenses, which fall almost entirely on families.
Heavy financial burden
55-year-old Burbuqe Ruhani, who is from Prishtina, spoke about her 86-year-old mother Nezakete’s battle with metastatic breast cancer. Nezakete passed away in August 2024, just a few days after Ruhani spoke to K2.0.
At the end of July 2023, Nezakete was diagnosed with breast cancer for the first time. Due to her age and other health issues, doctors recommended immediate surgery.
However, within a year of surgery to remove a breast tumor, a residual skin lesion grew over time in the affected area, and her health began to deteriorate. During this phase, her left hand developed significant swelling, known as lymphedema, primarily caused by damage to the lymphatic system during surgery.
She said that the most difficult part of this period was seeing her mother struggle with cognitive disorders, including dementia and hallucinations.
For Ruhani, the lack of information on how to approach her mother’s condition made it difficult to care for her. She also spoke about other challenges of going through this experience. “In general, no one can go through this situation without experiencing stress,” Ruhani said.
According to a study published in 2012 on the impact of caregiving on the psychological well-being of family caregivers and cancer patients, a terminal illness can significantly affect the physical, mental and financial well-being of family members. These family members often have unmet needs for information, support and communication.
A palliative care unit would provide important support not only for patients with advanced diseases but also for their families. Psychological support and access to appropriate information regarding the treatment and management of the patients’ symptoms can reduce the burden on family members and improve the quality of life for everyone. In the absence of a comprehensive palliative care service in Kosovo, family members are left to find support on their own.
After her mother’s cancer advanced, Ruhani and her family took over 24-hour care to stay close to and support her immobile mother. Ruhani, an economist at the Swiss embassy, a mother of two and most recently a grandmother, said that this journey kept her away from her close family and social circle.
Faced with this difficult task, Ruhani and her family coordinated the care. Ruhani’s sister Lulja took care of their mother from 8 a.m. to 8 p.m., while Ruhani took over from 7 p.m. to 8 a.m..
Lulja Ruhani mentioned that in addition to her older sister, she also shared 24-hour care with her brother and his wife.
As a result of a sharp cut to the arm and chest area, the wounds had to be carefully cleaned several times a day. Ruhani said that due to frequent wound drainage, she and her family took over the cleaning themselves and stopped the home care services, which they had previously used for wound management, including cleaning, bandaging and binding. With a limited team, the home care service could not provide assistance more than once a day. Ruhani’s mother needed this service multiple times a day, and the home care service could not meet these needs.
For patients classified as palliative care, like Pajaziti, Sahiti and Ruhani’s mother, another problem remains: access to full health services. For those who are immobile, transportation to medical visits with specialists, or for specific tests, presents a challenge.
Ruhani explained how challenging it was to visit doctors and get imaging tests done per their recommendations. If a lung X-ray was required, the whole family would come together to help. In a conversation this summer, Ruhani shared that her family used a taxi service with larger vehicles, as they couldn’t fit the wheelchair in their own cars. “My mother is immobile; it takes four of us just to lift her from the bed to the wheelchair,” she said.
The head of the Patients’ Rights Association in Kosovo (PRAK), Besim Kodra, said that access to health institutions is difficult, while transportation-related expenses are often not calculated, further burdening family members with additional costs.
“It is necessary to ensure access to healthcare institutions, despite the fact that the patients are bedridden. Otherwise, it leads to expenses, and some may even face catastrophic costs,” said Kodra.
As a result, visits to specialist doctors are often substituted with telephone consultations, explains Sahadete Kelmendi, head of the home medicine unit at Family Medicine Center XI in Prishtina. According to her, this practice often leads to the overprescription of medications and repeated use of the same antibiotic therapy, all without the patient’s presence or a direct assessment of their condition.
Istref Plakolli, a family medicine specialist in Podujeva, highlighted the same issue. According to him, specialist doctors prescribe infusion therapy for terminally ill patients over the phone, without prior examinations, sometimes even repeating the same therapy two to three times a day.
In Kosovo, municipalities such as Obiliq, Drenas, Kaçanik, Gjakova, Gjilan, Artana and Shtime provide ambulance services to transport immobile patients from their homes to specialist consultations and back.
But beyond transportation, expenses that family members must cover often exceed their income.
For Plakolli, a 66-year-old man suffering from respiratory insufficiency, the need for frequent servicing of oxygen equipment to ensure it functions properly adds to the burden of purchasing prescribed medications. This results in expenses that exceed his and his wife’s modest 240 euro pension. Even for Sahiti, accessing healthcare is not always easy.
Until September 2024, Sahiti received a pension of 150 euros under the Law on the Status and Rights of Paraplegic and Tetraplegic Persons. However, this amount did not cover the cost of a physiotherapist or hygiene products such as diapers, which are very expensive. Additionally, he incurred expenses for changing catheters, paid through private services, as well as for regular drug therapy. After a three-year legal battle, he now receives the full 375 euros provided under this category of the social scheme: 150 euros for himself, 150 euros for his caregiver and 75 euros for medications.
According to a 2015 study published in the journal Palliative Medicine, which conducted in-depth interviews with caregivers of terminally ill patients, the costs of caring for a terminally ill patient often push families into debt and, in some cases, bankruptcy. Direct costs to families include transportation, food, and medication, while indirect costs involve loss of employment or absence from work due to caregiving responsibilities.
Ruhani’s case was similar.
“We spend 30 euros a day, as if it were nothing,” she said, listing the items she often needs to have on hand, such as wound cleaning products, waterproof plasters, hygiene products like adult diapers, catheters, painkillers, chronic medications and sometimes, based on doctors’ recommendations, even albumin — an expensive prescription.
“We received 250 euros from the Municipality of Prishtina as aid allocated for cancer patients. That’s how much we spent for just one week on albumin,” Ruhani said. Since 2023, the Municipality of Prishtina has allocated 250 euros per year for people suffering from cancer and other serious chronic diseases.
The director of the oncology clinic at the University Clinic Center of Kosovo (UCCK), Ilir Kurtishi, said that the lack of comprehensive palliative services from public institutions has a significant psychological, physical and financial impact on patients and their families. “If home services do not provide continuous assistance, which often happens, families in some cases have to resort to private services operating in Kosovo, which come with additional costs,” said Kurtishi.
Kodra added that the association has received numerous complaints on this matter and that the government should intervene to improve the comprehensive approach to healthcare. Then, patients would be the ones to decide whether they want to use public or private services.
“When the state fails to do its job, it becomes attractive to businesses, and doing business with people who are on the verge of death is, to me, unethical and inhumane — that’s what I would call it,” he said.
Recently, there has been a surge in the offering of private home health services. Over seven operators are advertised on social media, providing home visits by doctors and nurses. Among them, one private operator also has an oncologist on their medical team.
Meanwhile, the European Commission’s 2023 Progress Report on Kosovo estimated that nearly a third of Kosovo’s population has limited access to healthcare services.
Municipalities without home medical service
According to the Ministry of Health, home medical service is offered in 30 municipalities nationwide, providing medical care to palliative patients. However, some municipalities do not have this service at all.
To identify separate units for home medical service, K2.0 conducted a questionnaire for health directorates in all municipalities in Kosovo. The responses revealed that some municipalities do not have a separate unit for home medical service. In these municipalities, immobile patients who need this service are assisted by the emergency department.
An example is the Municipality of Gjakova, which provides home care services through a 24/7 emergency service. A similar situation exists in Shtime. Meanwhile, in Drenas, the home care team operates from 8 a.m. to 3 p.m. for palliative care patients.
According to Kodra, providing emergency home treatment services in certain municipalities risks the treatment of urgent cases.
“On both sides, you have two patients at risk — on one hand, patients with an emergency who have to wait because of a case involving pain, and on the other hand, patients in pain whose emergency treatment may be delayed due to other cases,” said Kodra.
Meanwhile, the recommendations from the patients’ association and the home medicine service in Prishtina remain unanimous: palliative care should be established as a separate unit, distinct from chronic care services. The lack of a specific law on palliative care, and the special unit’s dysfunction, separate from both chronic and emergency services, highlight the greatest shortcomings in ensuring full access to healthcare and palliative medications.
According to the Law on Local Government Administration, the provision of primary health care services falls under the competence of municipalities. However, the absence of a strategic plan for palliative care from the Ministry of Health, as defined by the legal framework, reveals mismanagement of home care services at the municipal level by non-health institutions. Private companies and religious organizations often fill this gap.
For example, according to the National Audit Office (NAO) for the period 2018-2022, municipalities have paid over 14.5 million euros to religious nongovernmental organizations such as Caritas Kosova (CIK) and Islamic Relief Kosova (IR) to employ health personnel in public centers to provide home care services. The municipalities that purchased home care services from CIK and were included in the audit are Prizren, Ferizaj, Fushë Kosovë, Shtime and Obiliq. Meanwhile, the municipality of Gjilan has a partnership with IR. The audit highlighted irregularities and a lack of transparency.
Meanwhile, the Municipality of Drenas purchased home medicine services from a pharmaceutical distributor. However, this distributor was not licensed by the Ministry of Health to provide these services.
“This cannot be in accordance with the law,” said Naim Bardiqi, secretary general of the Ministry of Health. “It is a violation. The municipality must be held accountable for this. Religious organizations and pharmaceutical distributors are not health institutions and are not licensed to provide health services.”
Without sufficient medicines and without hospice
Another problematic aspect is access to medicines. According to the WHO, a key component of palliative care is access to opioid analgesics for pain relief. Article 11 of the Charter on Patients’ Rights in Kosovo emphasizes the right to avoid suffering and pain: “Every citizen has the right to avoid, as much as possible, pain and suffering at every stage of their illness.”
In Kosovo, the Ministry of Health has managed the supply of palliative medicines through the Essential Medicines List (EML) since 2019. The list includes non-steroidal anti-inflammatory analgesics (non-opioids) and opioid analgesics for pain relief, as well as medications for alleviating terminal symptoms such as inflammation, shortness of breath, constipation, diarrhea, anxiety and reducers of excessive secretions like mucus and saliva.
In the Municipality of Prishtina, the supply of medicines for patients receiving home care is generally satisfactory. In Drenas, however, the Ministry of Health only supplied 36.42% of the medicines it intended to supply in the first quarter, and it decreased by 20% in the second quarter.
Meanwhile, in Gjakova, the supply of medicines is 30-40% of the amount targeted in the EML. In Gjilan, there is also no full coverage of medicines, while Artana has confirmed that the level of medicine supply is unsatisfactory. However, with the health directorate’s budget, they have purchased the necessary quantities of medicines.
The Ministry of Health provides satisfactory coverage of medicines in Prizren and Podujeva, while Obliq and Kaçanik reported coverage as “to some extent” and “partially.”
The lack of palliative services has forced hundreds of patients to rely on their families for care, and authorities have used this reliance as an excuse for not establishing a hospice center for terminally ill patients.
The construction and management of a hospice center involves high costs, and the lack of prioritization for such a center has been justified by the concept of “large families,” where family members are dedicated to caring for the terminal patient until the last days of life, as was the case for Ruhani’s mother. However, this justification does not consider that families are becoming smaller and smaller, and there are patients who live alone. It also overlooks the fact that family members often provide care because they do not have safer, institutionally guaranteed options.
In the absence of hospice care, when the deterioration of terminal patients can no longer be managed by primary health care through 12-hour home care and secondary care at the regional hospital level, the only option remains the tertiary level — UCCK.
Kurtishi, the oncology clinic director, stated that managing terminal cases alongside those in the curative phase has been a major challenge. “The oncology clinic is overwhelmed by terminal cases. Since we have limited space and few beds, we have to place patients receiving curative treatment and those in a terminal condition in the same room, and for some privacy, we have separated them with a curtain,” said Kurtishi.
Bardiqi, an oncologist and former chairman of the board of UCCK, said that the overload of patients in the oncology clinic is “wrong and unethical.”
“This should not happen; measures should be taken,” said Bardiqi. “This is demotivating. If, for example, an emergency case is received during the night, that cannot be managed, but holding them there for a second and third day is unacceptable to me.”
Since 2017, the Ministry of Health has requested that the Western Balkans Investment Framework (WBIF) conducts an evidence-based assessment of palliative care needs at the secondary and tertiary levels for hospice care.
Bardiqi, who heads the working group for palliative care within the Ministry of Health, said that the WBIF returned an initial report that included comments on the country’s existing infrastructure for palliative care and the barriers that need to be overcome in this regard.
According to Bardiqi, the process is currently under approval at the Investment Fund, and the comments mainly relate to the creation of warm corridors and channels to prevent outside infections, as well as the lack of rational use of medical equipment.
While there is no initiative to create a separate law for palliative care and the establishment of hospice care is still in its initial stages, patients with advanced malignant and chronic diseases must rely on their families and their willingness to continue a life that is at least somewhat normal.
Sahiti, after a morning burst of energy that lasts one to two hours, tries repeatedly to move from his home in the Katër Llullat neighborhood, to the Pishat cafe in Prishtina for an espresso, using the help of an electric wheelchair.
As he mutters, hunched in his armchair and clutching his knees, he stares at the wheelchair in the living room. When he stretches his legs out on the table, which he usually does with his mother’s help, a spasm like an electric shock jolts his muscles, shaking his body strongly.
“This is what I experience daily,” he said as he asked to be left alone.
Lead editor: Gentiana Paçarizi.
Feature Image: Qëndresa Kastrati / K2.0
This article was published with the financial support of the European Union as part of the project “Diversifying voices in journalism.” Its contents are the sole responsibility of Kosovo 2.0 and do not necessarily reflect the views of the European Union.
Want to support our journalism?
At Kosovo 2.0, we strive to be a pillar of independent, high-quality journalism in an era where it’s increasingly challenging to maintain such standards and fearlessly pursue truth and accountability. To ensure our continued independence, we are introducing HIVE, our new membership model that offers an opportunity for anyone who values our journalism to contribute and become part of our mission.
Become a member of HIVE or consider making a donation.