Palliative Care in Armenia: Stages of Development and Current Status

Let me share with you our journey. It all began in 2003 when Grant Karapetyan founded the Pain Management and Palliative Care Association. Most members were oncologists. During one of our conversations, Grant invited me to join this initiative. Since then, we have been moving forward for twenty-one years, overcoming numerous challenges and achieving significant milestones.

One of our main achievements was changing the medical community's perception of palliative care. In 2008, a decision was made to include palliative care in the list of medical services for the elderly. In 2010, the Ministry of Health supported our project, and under the guidance of Stephen Connor from the Worldwide Hospice Palliative Care Alliance, we assessed our needs and identified directions for our work.

In 2011, we realized the necessity for additional education for doctors and nurses. We organized EPEC-O and ELNEC courses through which 60 specialists have been trained. Our sponsor, the Global Fund, provided invaluable support in training and implementing pilot projects in various medical institutions. These pilots were launched at the Hematology Center after prof. R.Yeolyan, the Yerevan State Medical University after Mkhitar Heratsi the Ararat Medical Center, and the Vanadzor Medical Center.

In 2012, the Ministry of Health established a working group to develop legal frameworks for palliative care. The Armenian government approved a palliative care agenda, incorporating service standards. We also began educating the medical community on the importance of opioid use for pain relief and included methadone in the list of essential medications. Methadone was used at two pilot sites, facilitating its integration into medical practice.

In 2014, palliative care became an official medical profession in Armenia, which was a significant step forward for us. Many countries, like Sweden for example, do not have such a specialty, although they do have experts in the field. Government Decree No. 29.17 established standards for palliative care in Armenia.

However, pediatric palliative care remained overlooked. In 2016, the roles of doctors and nurses in this field were defined. We developed a mandatory 60-hour program for family doctors and medical residents to understand the specifics of palliative care. This pilot project revealed the need to educate primary care doctors and clinic staff on when to transition from active treatment to palliative care.

We also developed a 1295-hour course (400 hours of theory and 895 hours of practice) for specialized training. Now we have students undergoing retraining directly alongside patients.

Since 2016, the Department of Clinical Psychology has developed a special palliative care program, adding psychologists to the team. The Armenian Pediatric Association created a course for practicing doctors and students.

Now on our challenges and problems. Despite our achievements, significant challenges remain. One major issue is the underutilization of painkillers. Statistics show that only 6% of patients receive all the pain relief they need, while the rest suffer. We are conducting training and monitoring to change this situation.

Changing the medical community's mentality is the hardest task. We face biases against opioids inherited from the Soviet era. The new generation of doctors is more open to new information, but there is still much work to be done.

We have only one state hospice with 30 beds at the Oncology Center, which is insufficient to meet all the needs.

Audit and accountability are also serious problems. Without these tools, it's hard to assess and change the situation. We conduct monitoring, but we lack the resources for a full audit.

Finally, the culture of teamwork is missing in our national culture. People are starting to understand the importance of teamwork, but this process requires time and effort.

We often complain about why we are not progressing faster, why we can't achieve quick results. The issue is that we inherited a complex situation. But we are moving forward, we are on the path to improvement. We have significant achievements. Now, 32 palliative care services are operating not only in Yerevan but also in the regions, providing care and support to patients.

I want to talk about the implementation of pediatric palliative care. I'll share how the process occurred, our development prospects, and where we currently stand.

Pediatric palliative care is much more complex than adult care. Specialists will likely agree that it is significantly different. We have a long way to go to establish this direction in Armenia.

The first needs assessment among the children population was conducted in Yerevan in 2010. We identified about 300 patients with muscular issues, hereditary diseases and central nervous system disorders. A pilot team was created at the Muratsan University Hospital Complex, including a pediatrician, a palliative care specialist, a psychologist, a kinesiotherapist, and volunteers.

For those unfamiliar with the needs of pediatric palliative care, it's worth noting that the percentage of cancer cases among children is very low, while neurological system disorders, neuromuscular diseases, congenital and hereditary diseases, and chromosomal abnormalities are much more common. Therefore, quality care is impossible without the involvement of specialists like kinesiotherapists.

We provided pilot services for 50 families and held the first seminars on pediatric palliative care for doctors and volunteers. In 2015, the Armenian Pediatricians Association conducted the first national needs assessment using international methodology. The study included examining child mortality and morbidity, applying international coefficients, interviewing care providers, and assessing various care aspects: general care, pain and symptom management, psychological support, terminal stage assistance, bereavement support, ethical and legal support.

We found that our best aspect was symptom management and the worst were bereavement support, ethics, and legal assistance. Healthcare workers and beneficiaries raised issues about misconceptions regarding the needs of pediatric palliative care, the necessity for evidence-based guidance, lack of funding, organization of care, and psychological support.

The annual need for pediatric palliative care was estimated at about two thousand patients. Main groups included endocrine diseases, blood diseases, congenital defects, kidney dysfunctions, autism, and perinatal problems. We understood that to develop these services in Armenia, we needed to change policies and legal frameworks, lobby for budget funding, create infrastructure, and conduct monitoring.

Our achievements include large-scale retraining of specialists in 2016-2017 with the participation of international expert Anna Gorchakova. All major medical institutions caring for children participated in these training sessions. We`ve implemented pre- and post-diploma programs for pediatricians and nurses.

We`ve conducted activities on perinatal palliative care, which includes caring for newborns with severe disorders and discussing ethical issues such as pregnancy termination. We face many problems related to the lack of guidelines, skills, and experience in this area.

We organized successful public awareness campaigns.

Policy-wise, in 2016, the Ministries of Health and Social Welfare developed and approved the concept of pediatric palliative care. The idea of creating a Palliative Care Center was integrated into the national strategy to improve children's and adolescents' health for 2016-2020. Licensing rules were changed, new qualification requirements for specialists and necessary equipment for care were introduced.

In the government's 2021-2026 program, a pilot pediatric palliative care service was included. In 2022, we approved a new concept at the Ministry of Health, and in 2023, we adopted a resolution on the functions of a mobile pediatric palliative care service.

The first 5-beds service was established in 2021 for oncological and hematological patients. Subsequently, 3 more beds were added in the intensive care unit of the Children's Hospital at the ARABKIR Medical Complex. The mobile service will cover Yerevan and nearby towns within a 30 km radius.

We plan to train primary care doctors in basic palliative care knowledge, create palliative offices and rehabilitation centers at the secondary level, and provide specialized care at the tertiary level. We will collaborate with the Ministry of Social Welfare and Employment, public organizations, clergy, and volunteers.

However, there are still issues related to legal matters, lack of specialists and funding, and the absence of necessary equipment and medications. The new mobile center should help us through the pilot phase and expand this service nationwide.

We need to keep a patient registry, change mindsets, train specialists, and raise public awareness to achieve success.

As a pediatrician and rehabilitation therapist, I often encounter families and children needing palliative care and deeply understand the problems in this area.

The creation of the first palliative clinic was a significant achievement for our region. The Palliative Care Center at the Yeolyan Clinic mainly hosts children with oncological and hematological issues. As a rehabilitation therapist, I am actively involved in this work.

Our department has only five beds. Together with international experts, we assessed the need and concluded that about a hundred new cases of childhood cancer require care annually. For these patients, we use morphine, which is available and convenient in small doses, making it suitable even for the youngest patients.

We provide comfortable end-of-life care and offer post-loss social and psychological support to families. We have home services for children in remote regions or whose conditions allow symptom management at home. We believe that being at home with the family is better for a child. A nurse or a member of the social-psychological team visits these children at home.

Our team includes a doctor, a rehabilitation therapist, a senior nurse, on-call nurses, a social-psychological team, a psychotherapist, and a priest. It was difficult to find suitable nurses, but this year the team changed by 90%, and now we have specialists who excellently perform their duties.

We wear dark blue or dark green clothes to avoid additional stress for children in case of bleeding. The physiotherapist visits us twice a week, helping to move children and teaching nurses and other clinic staff how to change a child's position and prevent bedsores.

We have a regular priest who often visits our department. He administers sacraments and knows many of the children, regularly visiting them. We always ask parents' consent for a spiritual visit, and if the child is old enough, we ask them as well.

Our department has five large rooms of 26 to 30 square meters, where families can stay together with their children. We have no visitation restrictions, even during quarantine periods. Downstairs, there is a large playroom for activities, a relaxation room, and a separate kitchen for children. Parents do not cook, as we provide four meals a day with the support of the City of Smile Foundation. Physiotherapy is conducted directly in the rooms using special equipment.

We have been offering palliative care at the hospital since 2021. Before that, children either stayed in a treatment department or returned home to live the final stage of their life. During this time, we have had 23 children with various diagnoses, mainly neuroblastoma and malignant brain tumors.

We strive to organize our work fully. Our social-psychological service holds various events, including birthday celebrations and trips to the Yerevan Amusement Park. We try to meet the children's needs by asking what they would like. For example, one child wanted live chicks, and we fulfilled that wish. Another wanted a cat, a third wanted to try Italian cuisine, and we organized all of these.

My colleagues have already said much about the psychosocial aspect of palliative care, but I want to delve deeper into this area.

The goal of palliative care is to improve the quality of life, including psychosocial well-being. For a multidisciplinary palliative care team, social support and psychological experts are crucial. According to the concept of total pain, we must care for not just physical pain but also psychological and social pain. Alleviating one type of pain can help ease others, highlighting the importance of psychosocial support.

Levels of psychosocial support in palliative care are diverse. It's essential that all team members have psychological skills and can effectively communicate with families: from empathetic communication and general psychological support provided by the entire medical team to more specialized psychological interventions handled by mental health professionals. This model is adapted by the European Association for Palliative Care.

In Armenia, to address the gap in palliative psychological care, the Center for Applied Psychology, under the leadership of David Gevorkyan, developed a 60-hour multidisciplinary palliative care course in 2016. This course is taught at the Clinical Psychology Department and the Yerevan State Medical University. Since 2018, this subject is also taught within the master's program.

In 2017-2018, we developed a 168-hour practical retraining course for palliative psychologists. We also started creating a palliative care curriculum for the master's level, which is still under development.

In 2019, the Pediatric Oncology and Hematology Center at the Yeolian Clinic was established, providing support to the departments of hematology, oncology, transplantology, and patients with recurrent forms of cancer. In 2011, with the support of the City of Smile Foundation, a palliative clinic was established within the Yeolian Center. Our psychosocial service also works with patients in the palliative care department.

The peculiarity of our work with the palliative care department is that children receiving medical care get to know psychologists from the diagnostic stage. Their transition to the palliative care department happens with the same team, making adaptation easier for a patient.

In the palliative care department, we have psychological support not only for children but also their families, including parents and sometimes siblings. We apply palliative support methods to all of them. Art therapy is often useful.

Psychological work continues during the grieving stage after a child's death. We assess parents' needs and work individually with them. Since 2023, we have started group work with parents during the grieving stage, thanks to our friend-priest.

After losing a patient, we hold a ritual, releasing floating lanterns. The ceremony helps both healthcare workers and parents cope with grief.

In summary, various psychological intervention methods and techniques are crucial. But the most important thing for me and my colleagues is conscious and full presence with a patient. This is challenging work, but our goal is always to provide such presence and to be a support for the family. To achieve this, it's important to care for ourselves from a psychological perspective.

As mentioned, I am the Head of the City of Smile charitable foundation, which supports children with cancer in Armenia. We strive to fully meet the needs of these children, especially when these needs are not covered by the healthcare system, and we aim to relieve the financial burden on parents so they do not spend money on treating their children.

For a long time, there was no pediatric palliative center for cancer patients in Armenia. My first experience studying palliative care was at the St. Jude Clinic, where I first saw the care and treatment given to children with palliative status. This made me feel uneasy about our children, who did not have such opportunities. Unfortunately, we had terrible stories about children in need of palliative care whose parents couldn't even provide pain relief due to a lack of resources in regional clinics. These stories affected both parents and children, so it became our important goal to create a palliative center for children with cancer to ensure they have a decent quality of life.

For parents, it means a lot to see their child receiving quality care, pain relief, and support. The financial aspect is also important. Many apartments are not adapted for children with special needs, there are no elevators, and bathrooms are not suitable for children with musculoskeletal problems. Additionally, if a child has siblings, it's essential that they remember their brother or sister as healthy and happy, not sick and exhausted. Therefore, moving to a palliative care unit is often a good solution.

We decided to create a pediatric palliative center for oncology patients that would radically differ from a typical hospital. With the help and consultation of colleagues from the St. Jude Clinic, we started creating a palliative center in Armenia. Unfortunately, the project was delayed due to COVID-19 and the war in Armenia, but in 2021 we were able to open it. Twenty patients have already used its services. The center has five patient rooms, and although we wish they would always be empty, unfortunately, this is not the case. But the center plays an important role, providing parents with the confidence that their children are in good hands.

Our center employs specialists from various fields: a psychosocial team and palliative medicine specialists. This helps parents by easing their burden and allowing them to be with their child and provide psychological support.

We have tried to create an atmosphere where children do not feel like they are in a hospital but can spend time with their relatives and friends. We have no visitation restrictions, so that children receive positive emotions and don't feel lonely.

Question

It seems like there is a well-developed regulatory and legislative framework in Armenia. In other countries, it often happens that a working initiative, a facility, or a hospice appears first, and only much later is a legal framework developed for these activities. But in Armenia, the legal framework appeared relatively quickly and is well-formulated. You even have a recognized profession for palliative care doctors. How did you manage to establish such effective interaction with the governmental legislative bodies to create such a legal framework so quickly?

Narine Movsesyan

We have a unique situation in this regard. Our entire legislative framework, although not perfect, is prepared for any initiative in the field of palliative care. We have had very positive and productive cooperation with the Ministry of Health. Our current rector used to be the Minister of Health, and the current Minister is also very open to cooperation. Many people are involved in this process, all striving to advance palliative care.

We assembled working groups twice. The first time was in 2010, and the second in 2014. Top lawyers, healthcare organizers, and doctors were involved in the work. I want to note that all this happened in close cooperation. We had an excellent curator, Stephen Connor, who constantly helped and guided us.

Moreover, we have one of the best legislative frameworks for prescribing opioids. It is quite liberal, meaning that any doctor can prescribe them in the context of the disease or specialty they work with. This can be not only oncologists but also endocrinologists, therapists, rheumatologists, and so on. All doctors dealing with pain syndromes can prescribe opioids. We have a document on the prescription of opioids within palliative care, which slightly limits us, but the point is that almost any doctor can prescribe opioids at the incurable stage of the disease.

Colleagues from France visited us and were amazed at how liberal our laws are. We can prescribe opioids for 10 days, and if the patient exhausts these supplies, we can prescribe again without restrictions. But there is resistance from the medical staff, which has not yet adapted to this. Our legislative framework is excellent. For example, prescription forms that used to be issued for 3 days are now issued for 10 days.

There was a period when Healthcare Ministers changed every year, which was very difficult. We had to start over each time, but we were persistent and managed to overcome these difficulties.

Question

You mentioned that there is resistance from doctors and nurses, especially doctors. Besides educational work, such as regional visits and training sessions where you repeatedly explain that it is not scary, it is effective and necessary, do you have any other ways or plans to address this issue in Armenia?

Narine Movsesyan

As a doctor and pain and palliative care expert for the Real World Real People organization, I participated in regional tours throughout Armenia three times and organized training sessions dozens of times. However, simply providing information is not enough. Our monitoring has shown that only 6% of patients receive adequate pain relief. There used to be even fewer, and people were left alone with their pain.

No matter how much we train, without audit and administrative measures the situation will not change. Doctors must step out of their comfort zones and start prescribing medications themselves. Recently, this issue was discussed at the Ministry. The problem is not only with primary care physicians — family doctors and general practitioners — but also with their managers. Clinics managers and chief doctors often resist changes, staying in the old paradigm. When we invite them for training, they often send their deputies or oncologists instead.

Chief doctors often cite police control, fearing responsibility for illegal drug trafficking. But we have conducted two or three seminars with police officers, and we have no problems with law enforcement. When doctors refer to potential police issues, I ask why they don't refer to the police when prescribing antibiotics. What's the difference?

We push through, trying again and again to make the necessary changes. Changing the mentality is very difficult: no one wants to leave their comfort zone. Some are not interested because they are about to retire; others simply do not want to change. The transition period is very challenging, but we continue to work in this direction.

Question

Home care will develop, but it’s still not the entire territory of Armenia; the service area of mobile teams is limited. Those who can get to a facility will naturally bring their child or relative, but unfortunately, some people don't have that opportunity. An important issue, especially relevant during the COVID period, is whether you have experience with telemedicine. This could be online consultations via Zoom or phone. Could you share the possibilities or challenges you face in this area? Also, how legal is it in Armenia, and how widespread is its use?

Narine Movsesyan

I have personal experience consulting patients through various messaging apps. Our strategy is to make palliative care accessible nationwide, not just in Yerevan. But we also emphasize developing mobile services because sometimes a patient cannot even reach a hospice. Experience shows that palliative care starts its development with mobile help – when care reaches the patient, not vice versa.

Regarding telemedicine, we currently don't have a legal framework for it, but we have applied and continue to apply remote consultations.

Eva Movsesyan

As for mobile pediatric services, they are just in the organization stage. We are starting with a pilot model that will only serve the capital and nearby areas. If the model proves effective and beneficial, a corresponding assessment will be made, and in the future, we can extend this model throughout Armenia. We want our organization to serve as an organizational and methodological center, while full-fledged palliative care services operate locally.

Telemedicine is not formally specified in any approved strategies or standards yet, but the center providing organizational and methodological support should include such a service for regions using modern information technologies and telemedicine. For now, this is more informal communication and patient support over the phone or other similar means.

Regarding adult palliative care services, centers already exist in the regions. They are being created based on clinics, ensuring territorial accessibility. Patients can use these centers, and if they can't, a district doctor performing the functions of a palliative care doctor can visit them at home.

Narine Movsesyan

Our main strategy has been to train district and family doctors in basic palliative care to make it more accessible to all population layers.

Armenia is now transitioning to e-health and universal insurance. I believe the issue of telemedicine will soon be discussed at the legislative level.

Question

How do you handle difficult conversations with parents of young patients, their relatives, and families? Are there any recommendations you can share? It's clear that there are methodologies for conducting such conversations, but do you have any professional insights or special techniques? Also, what specialists are usually involved in these meetings? For example, planning how the final stage of the patient’s life will proceed.

Alisa Kamalyan

I'll start with the second question. Such conversations are usually held by a doctor and a psychologist. Ideally, the doctor and psychologist speak to the family together. Of course, sometimes one of them conducts the conversation, but the ideal structure includes both.

The gold standard for such conversations is the SPIKES Protocol, which is well-known and accessible, providing a clear structure for talking with the family. Currently, I can't think of any other special recommendations; this protocol describes everything well.

In the final days of a patient's life, our spiritual mentor often visits us, talking with parents and providing significant support. He is always available, and if we call and ask him to come, he does his best to arrive as soon as possible.