Children's Hospice "Firefly World": From Idea to Reality

On September 21, 2023, a webinar titled "Children's Hospice "Firefly World": From Idea to Reality" took place on the PACED platform.

The event focused on the history and operation of the Firefly World Children's Hospice in Tbilisi, Georgia. During the webinar, experts were discussing:

  • What is the need for palliative care in Georgia? We will learn how many people need this care and assess how well it is met.
  • How did creating the outreach service and the hospice come about? Our colleagues highlighted all stages, from seeking funding to construction and the hospice's current work.
  • How does the hospice operate, and how many patients are cared for?
  • What is an optimal the composition of specialists providing palliative care and other patient services.

Nino Kiknadze, Founder of Firefly World Hospice
Irakli Vetsko, Director of Firefly World Hospice
Rodami Gogohia, Coordinator at Firefly World Hospice
Nana Metreveli, Doctor at Firefly World Hospice
Manana Kometiani, Head Nure at Firefly World Hospice
Natalia Gogitashvili, Psychologist at Firefly World Hospice
Luka Mgeladze, Physical Therapist and Rehabilitation Specialist at Firefly World Hospice
Irakli Vetsko, Director of Firefly World Hospice

Firefly World Hospice has been operating since 2017. The professionals received training and gained experience in other hospices before starting work. The hospice provides support on a pro bono basis. Currently, the organization assists palliative patients in three main directions: an inpatient unit with seven rooms, a daycare centre, and home care. The hospice presently supports 145 patients.

The funding primarily relies on donations from individuals and companies. The hospice holds an annual charity auction, where Georgian artists generously donate their paintings. The funds raised are fully allocated to support the work of the hospice. Last year, $140,000 was collected, of which $20,000 was donated to support the Kharkiv Children's Hospice. Grants are also sought to maintain the financial position.

Nino Kiknadze, Founder of Firefly World Hospice

I am a lawyer by profession, and before I encountered palliative care, I had no idea about this field. I am sure that most people, like me, know nothing about palliative care.

For more than 15 years, I worked at the Open Society Foundation in human rights and healthcare areas. Through this work, I became familiar with the field of palliative care, which greatly fascinated me. Thanks to the Open Society Foundation, the field of palliative care has been established in Georgia. Legislative and regulatory acts, guidelines, and protocols have been developed, which are still in effect today. After visiting hospices in the United States and Romania, I replicated what I saw in Georgia.

In 2015, together with the Curatio International Foundation, we studied the need for palliative care in Georgia. The result was a figure of 828 children in need, and we started organizing palliative care at home.

The next step was the decision to build a children's hospice. The Open Society Foundation office assisted me in this work. Initially, we tried to collaborate with government structures to secure a land plot and receive assistance with construction. However, after two years of negotiations, we were still waiting to obtain something. To this day, the development and functioning of the palliative care field occur without government involvement. The land plot for the construction of the children's hospice was transferred pro bono by a medical firm that owned it. As part of the preparation for construction and commencement of operations, I visited around 17 countries and studied the experience of organizing palliative care in each of them. An architect accompanied me on one of these trips and developed the hospice building project pro bono, discussing additional functional tasks that needed to be considered. Construction began in 2016, and we raised about one million lari in donations from individuals and international donor organizations. The funds were spent transparently, and we provided donors with bank statements. All funds were exclusively used for the construction of the hospice, which is confirmed by an audit conclusion prepared by an international firm and also sent to our donors.

Unfortunately, the amount raised was insufficient, and various companies came to our aid by providing their products, such as doors, windows, cement, and finishing materials, for free. The then-president, Georgy Margvelashvili, actively participated in constructing Firefly World Hospice. He allocated a significant amount from the reserve fund. Well-known Georgian singers held charity concerts and donated their fees to support the hospice. The German government presented a car, and individuals donated another car.

Then, a competition was announced, and based on its results, we assembled a team of specialists. However, it was evident that all team members needed to gain experience in the palliative care field, so we organized courses, training, internships, and other available learning formats for them at the best hospices in the world.

In January 2017, Firefly World Children's Hospice began its work. From that moment until the present, the hospice supports 9-10 children in the inpatient unit, around 70 at home, and provides outpatient care to 3-4 patients daily.

It is essential to me that children live without pain and have access to any necessary assistance. We strive to create dignified conditions for our patients, and many people help us in this endeavour. The hospice team is a family united by shared values such as dignity, responsibility, and love for children and their families.

Nana Metreveli, Doctor at Firefly World Children's Hospice

I have been working at Firefly World Hospice since its opening. For me, the hospice is a calm harbour, a dock for children and their families. First and foremost, we create peace, and second, we conquer pain.

The activities of the hospice cover several areas - constant round-the-clock communication with patients and their parents, assistance to patients with any complaints and inquiries, and complete round-the-clock support for any symptoms.

In the inpatient unit, we admit patients to assess and prepare recommendations and prescriptions during crises. The task of the doctors is to stabilize the patients to the maximum and teach parents the necessary caregiving skills so that the child can stay at home and receive care.

Hospice doctors and nurses train parents to use care tools that improve the quality of life and reduce the need for medical intervention. For example, using a nasogastric tube has significantly reduced the number of aspirations and clinic visits related to this issue. The use of a gastrostomy helps improve digestion and combat weight loss. In most cases, Firefly World patients require specialized care, and training parents allow children to be transferred to a home environment. Before that, hospice staff analyze the situation and conditions at home to ensure compliance with the required level and provide necessary equipment and supplies - only after that is the patient transferred to home care while still receiving close attention from the hospice team.

Among our patients are children with extensive malignant formations, whose condition is characterized as relatively stable with subsequent sharp deterioration. There are children with chronic pathologies, in which there are periodic exacerbations followed by recovery, but with a steady decline in indicators. There are patients with progressive neurodegeneration - there are only two of them in Georgia - with rapid development of symptoms. Many children have post-traumatic neurological pathologies, where positive dynamics can be observed, as well as a complete absence of changes in condition.

For our patients, the hospice is primarily about symptom management. The daycare centre allows parents to have some free time, recover, and receive informational support. Communication is also essential. We create a family-friendly and comfortable environment where all family members can communicate with the patient - we help spend quality time together and celebrate family holidays and dates.

Over the years of the hospice's work, we have achieved an 80% reduction in our patients' clinic visits. We managed to cope with the infection during the pandemic. Only 3 cases of the disease were detected among our patients, and most importantly, we managed to prevent the internal spread of the virus. This became possible thanks to coordinated work and strict compliance with control and preventive measures.

The most important thing is teamwork and the involvement of parents. I am proud that the parents of children who have already left us continue to help and visit the hospice.

Manana Kometiani, Head Nurse

Our team, consisting of highly qualified middle medical staff, is a vital link. A hospice nurse helps and supports patients and must be ready to make quick decisions in times of crisis.

There are four criteria for admitting a patient to the inpatient unit: the final stage of life, exacerbation of conditions requiring pain management and symptomatic treatment, parental support (social function), and a training program for parents.

The final stage of life is a condition in which the duration of life is reduced to a minimum. The hospice implements specialized care for children in the terminal stage and develops a care plan. This plan is individually tailored to each patient from admission until their last day of life. Transparency of the child's health status and all prescribed procedures for the child's family members is critical. Continuous monitoring of the patient's vital signs is carried out. The hospice team also supports the patient and their family in the final stage of dying and after death - providing psychological and legal support and assistance with burial and ceremonies. Communication with the family does not end at the moment of death.

Exacerbation of conditions requires work in pain management and symptomatic treatment. We carefully develop an individual approach to pain relief. However, besides pain, other diseases worsen the quality of our patients' lives. In such situations, a personal action plan is very important, including predicting the consequences of procedures and the appearance of new symptoms. A well-developed plan allows us to make assistance as effective as possible.

Palliative care also implies support for family members. For example, parents have 24 free days during the year that they can allocate at their discretion. On these days, we fully take care of the child.

The training program involves informing and educating parents and family members to develop caregiving skills. This is one of the most essential areas of hospice work. The program is primarily designed for parents of children who require constant palliative care. After being discharged from the clinic, such parents face problems and difficulties - that's when we come to their aid.

The daycare centre operates daily from Monday to Friday and works full-time. In the centre, we can accommodate up to 4 children per day. The hospice is equipped with specialized transportation for transporting children. There is also a nanny working in the daycare centre. Her responsibilities include

  • developing an individual plan for each child during their stay at the centre,
  • ensuring safety and monitoring health conditions,
  • providing meals and
  • performing sanitary and hygiene procedures.

Special educators work with the children throughout the day, and rehabilitation means such as music therapy, aromatherapy, and colour therapy are available.

Natalia Gogitashvili, Psychologist at Firefly World Hospice

I have worked at Firefly World Hospice since 2017, helping create a comfortable atmosphere for our patients and their families. A person is a biopsychosocial being, and taking care of them in all these areas - physical care, socialization of children, and psychological support for patients and their families - is equally important. I work not only with children and their parents but also with the hospice staff.

We use various approaches in our work. For children, we have multisensory, play, and art therapy; for adults, we provide psychotherapy, coaching, and other forms of assistance effective in such situations. Psychological support plays an important role - it is easier for children and parents to accept and manage their challenges. They learn to regain strength and create a healthy environment.

Regardless of a child's problem, we can care for their well-being and quality of life. Our greatest gift is the opportunity to create a happy environment where children experience joy.

I want to tell you about some of our patients.

First patient: Tsotne, 12 years old
Diagnosis: Cerebral Palsy (CP), Tetraplegia, and Global Developmental Delay

The diagnosis implies that the child cannot walk, speak, or have problems with cognitive processes, self-care, and perception of reality. Regarding development, our patient corresponds to a one-year-old child but can clearly express emotions and has acute hearing. Utilizing this, we create conditions in which they experience maximum comfort. In our magical sensory room, they feel happy.

Second patient: Temuka, 11 years old
Diagnosis: Brain Tumor

The patient was admitted to the hospice after surgery. They could partially move their left and right legs but depended on a tablet. The child was attached to it and did not engage with others throughout the day. Any attempt to communicate or touch would result in screaming. Our first significant achievement was redirecting Temuka's attention from the tablet to other objects in the sensory room. They developed new interests. The sensory room contains various videos, audio, kinesthetic, and olfactory stimulants. Each of them activates different areas of the brain, contributing to development. After the sessions, Temuka started communicating - they heard and understood, participated in games, and even spoke three words. By discharge, they were no longer tethered to the tablet, and their life was enriched with new interests, just like any ordinary child.

Third patient: Salome, 16 years old
Diagnosis: Spinal Cord Injury, Tetraplegia, and Contusion of the Cervical Vertebrae

After a fall from a height, the patient was in a critical condition - unable to move, but their intellect remained intact. Their psychological state was distressing - constant screaming, tension, irritability, aggression, and continued attempts to seek attention. Salome's overall story was not straightforward - a difficult childhood with family conflicts, an alcoholic father, and a mother who would leave home. Salome tried to mediate and struggled with difficulties in her parents' relationship. This influenced her behaviour - she skipped school, fell behind the curriculum, had conflicts with peers, and ran away from home. In the atmosphere of trust and understanding created by the hospice team, Salome felt safe and found peace. Through psychotherapeutic work, her relationship with her parents improved. She focused on herself and her development and even continued attending online classes while in the hospice. She lives in France with her mother and siblings, studies, and pursues a profession.

Manana Kometiani, Head Nurse

Since 2015, even before the construction of the hospice, we have been providing home care, which is still an essential part of our work. Currently, we support 65 families, although the number of hospice patients is much higher. This is because the home care service only covers Tbilisi. The team's core is the nurses who provide most of the assistance. The doctor is involved as needed and during the first visit to assess the patient's condition and develop care recommendations. Each patient is visited by the team 2-3 times a month, and some children require daily visits, but our service can only support 4-5 such patients.

The goals of palliative home care are to improve the quality of life, alleviate pain, and improve physical well-being. It is necessary to assess the child's condition accurately, provide symptomatic treatment, and, if necessary, perform invasive interventions. Our service also offers families social and psychological support, including providing necessary equipment, medications, and consumables. Parental training in essential skills is also within our scope. Through comprehensive measures, we achieve an improvement in the quality of life for our patients.

Through our efforts, the Firefly World Children's Hospice home care service conducted a study, which showed that the number of clinic visits and hospitalizations for our patients has decreased by four times. This indicates that we are addressing our challenges and that home care is very effective. As a result, children spend more time at home and avoid stress.

Luka Mgeladze, Physical Therapist, Rehabilitation Specialist at Firefly World Children's Hospice

I have been working at the hospice since 2017. It is essential to understand that rehabilitation for palliative patients differs from regular rehabilitation. It all starts with getting to know the child, their medical history, and their parents. We identify needs, expectations, and the desired collaboration format through communication. Then, we proceeded to investigate the rehabilitation history. Before forming a plan for rehabilitation activities, it is crucial to assess the child's condition accurately. For this purpose, we use the GMFM scale, an international tool for evaluating changes in motor functions. Based on the assessment results, goals, timelines, and the level of parental involvement in rehabilitation activities are determined. The participation of parents is essential since rehabilitation activities initiated at the hospice should continue at home after discharge. Rehabilitation specialists provide parents with recommendations for selecting exercises and tasks to maintain the necessary activity level.

We often hold meetings where the team discusses patients, develops individual plans with the involvement of specialists, and moves together towards the goals. We usually succeed, but there are also challenging cases where it is only sometimes possible to achieve the planned objectives with every patient. Every two months, we conduct an update for each patient, and based on the results, rehabilitation plans are adjusted.

Exercise planning starts with head control, sitting, walking, etc. Suppose there are issues with the upper respiratory tract and swallowing process. In that case, we apply various respiratory therapies in collaboration with doctors, such as drainage, percussion, and vibrations, which help clear the airways effectively. All procedures are carried out according to a schedule. We ask parents to send videos for feedback after discharge. All the achievements at the hospice are the result of collective effort.

Let me share a few words about some of our patients.

First case: Lazare, eight months old
Diagnosis: Paraplegia, developmental delay, movement problems, weak limbs

Lazar slowly gained motor abilities, and it took almost two years for him to go downstairs. Now, at 6, he has learned it, which is a significant progress.

Second case: Mari
Diagnosis: Brain tumour

Mari was a challenging child who reacted aggressively to touch and tried to keep everyone away except her mother. But we managed to find the key to her - she developed a liking for us and the exercises - and she is now actively dancing with almost no limitations after a year.

Third case: Tato
Diagnosis: Traumatic brain injury

Tato had an accident while riding a bicycle and couldn't move without support after the injury. There was progress in function restoration within a year, but he still couldn't move quickly. After another year of rehabilitation activities, he can now move almost without limitations and asks for a bicycle as a gift.

Question: Can I come to your hospice for 1–2 weeks to learn and intern?

Answer: Yes, it is possible. We must coordinate the timing and schedule to make the training more informative. Please email us.

Question: Where did the psychologist acquire skills in working with palliative patients, and what opportunities are there in Georgia for training in palliative care for psychologists and social workers?

Answer: I have a master's degree in psychology, and I learned about multisensory therapy as part of my specialization through training at the hospice.

Question: Please clarify in which regions of Georgia pediatric palliative care is available and, where available, to what extent.

Answer: We assist those within a 90 km radius of Tbilisi. In this part of the country, we fully meet the needs and can provide care.

Question: Pain management - how is the circulation of analgesic narcotics organized, and how do you alleviate pain in patients?

Answer: In acute conditions, we use opioids, but we mainly rely on the recommendations of Form 100 from an oncologist. The patient goes to their polyclinic to be prescribed opioids; the medication is given to the parents, who then hand it over to the hospice nurse. Such medications are prescribed once a week. Any unused medication is returned either to the polyclinic or to the police.

Question: Is scopolamine registered in Georgia?

Answer: No, it is not registered in Georgia. There have been a few cases where we used it (imported from France, transdermal). Parents obtain it themselves.

Question: Do you replace scopolamine with atropine?

Answer: No, under no circumstances. Atropine has powerful side effects. We use transdermal scopolamine, which has proven to be effective.

Question: Is palliative care available to residents of regions more than 90 km from Tbilisi?

Answer: If the patient is terminal with an oncological diagnosis, we will help them. As for other diagnoses, there are difficulties. If the patient is more than 90 km from Tbilisi, the only option is assistance in a hospital. There are no time restrictions for incurable patients staying in the hospice.

Question: What criteria do you use to select children for home care?

Answer: Patients must submit Form 100. We assess the patient's eligibility during the first visit according to our criteria. These criteria describe which diseases fall under palliative care - hereditary diseases, malignant tumours, chronic pathologies, cerebral palsy, epilepsy, hydrocephalus, microcephaly, and heart pathologies. Parental preparedness is crucial; until they acquire the necessary caregiving skills, the child will stay in the hospice. Many children come from clinics - we regulate their nutrition and respiratory function and transition them to home care.

Question: Is your assistance available to foreign children, or is it only for Georgian citizens?

Answer: If they permanently reside in Georgia, we make no distinctions. We have citizens of Russia and Ukraine.

Question: What non-opioid analgesics do you use?

Answer: In the initial stage, we use co-analgesics like paracetamol. If the pain persists after the initial phase, we use other co-analgesics, such as dexalgin, anti-inflammatory drugs, and other NSAIDs. If these do not help, we switch to opioids.

Question: What opioid medications do you use?

Answer: We use morphine.

Question: Do you have children on respiratory support? On invasive ventilation?

Answer: We have only one patient on home mechanical ventilation. Unfortunately, we do not have artificial ventilation devices.

Question: Does the Ministry of Health of Georgia collaborate with the hospice?

Answer: No, we have no support from the Ministry of Health.

You can watch the video recording in English, Russian and Georgian on our YouTube channel.
The summary in Russian is available via the link.