Located in the Tashkent region, the children’s hospice Taskin (“Solace” in Uzbek) represents a significant milestone in the development of vital children’s palliative care services in Uzbekistan. Knowledge and understanding of children’s palliative care are limited among health-care professionals and the public, and Dr Rustambek Norbaev, Chief Physician at Taskin, hopes to help change that. He is firmly committed to further developing his own skills as a paediatric palliative care specialist, and to building capacity in the medical community.
“Two encounters set me on this path,” Dr Norbaev explains. “The first was as a young medical student when I attended Dr Ziyaev Yahyo’s lectures on hospice and palliative care. He was, and continues to be, an important mentor of mine, and I’m now in the fortunate position to be working with him. The second encounter was in 2019 when I met children’s palliative care specialists from the world-renowned St. Jude Children’s Research Hospital at WHO’s Global Initiative for Childhood Cancer national meeting in Tashkent. They inspired me to devote myself to this field.”
Uzbekistan, with a population of over 35 million, has 200 palliative care beds for adults across the country; however, these are limited to cancer patients only. It is difficult to assess overall population need for palliative care services, but according to WHO’s International Agency for Research on Cancer (IARC), the incidence of cancer among those under the age of 15 in Uzbekistan in 2022 was estimated to be 10.7 per 100 000 population. This highlights the need for further expansion of palliative care services for children in the country.
Children’s palliative care services
Currently, the hospice accommodates 20 young people with cancer and their parents. The facility is staffed by 4 doctors, 7 nurses, 2 psychologists, 1 social worker, 6 junior staff and a therapeutic dog-in-residence named Lisa. Each room is shared by a child and 1 parent, and is fitted with a bathroom, television, telephone, refrigerator, air conditioning, heater and internet access point. The children can access an art room for painting and pottery sessions.
Young people are accepted from all over Uzbekistan without referral. All that is required is a recent hospital discharge letter showing a diagnosis of advanced cancer. All services for inpatients and their families are provided free of charge.
Dr Norbaev explains the services: “We provide pain management, anti-sickness medications and nutritional support for our hospice patients, and psychosocial assistance to patients and their parents. Generally, the period of stay is 10 days; however, depending on the situation, patients may remain in the hospice until the end of their days. Depending on the availability of beds, we can also provide social respite services for patients receiving high-dose chemotherapy and pain management for patients with serious chronic pain syndrome.”
As in other countries in eastern Europe and central Asia, access to palliative care medication – in particular strong opioids – continues to be an ongoing logistical and legal challenge in Uzbekistan. Opioids are available for injection, and liquid morphine, which must be administered every 4 hours, is also available, but slow-release formulations are not. District-level oncologists are responsible for prescribing opioids, yet procurement and supply issues create a mismatch between what patients require and what is currently available.
In addition to limited access to strong opioids, another serious challenge for Dr Norbaev and the palliative care professional community is addressing the inherent fear and lack of knowledge among health-care professionals, children and parents related to prescribing and administering strong opioids. Many treating doctors and oncologists do not understand palliative care, the benefits it can offer and when it should begin.
Dr Norbaev believes this knowledge gap should be addressed urgently. “First of all, we need training seminars for doctors and mid-level health workers. We need to ensure oncologists do not fear referring patients to the hospice. We also need to address parents’ concerns so that they understand that, in most cases, palliative care does not shorten life and can, in fact, extend it. They should be informed to make the best choices for their sick children.”
Dr Norbaev is a firm advocate of people’s right to access palliative care, and sees how it can improve the quality of care offered to patients and their families.
“The right to high-quality palliative care is a fundamental human right. Palliative care is an integral part of medicine. Developing a cohort of palliative care specialists will help improve overall medical care. Palliative care as a discipline is primarily concerned with a patient’s quality of life. It also teaches doctors how to hold difficult conversations with families and patients.”
Clear solutions
Integrating high-quality palliative care into health systems to ensure that all children who require palliative care receive it necessitates overcoming many challenges, including insufficient access to essential medicines.
While there is still much to do, advances have been made in the development of children’s palliative care throughout Europe. Important work has taken place in developing pain management guidelines for children and for adults, and the objective now is to ensure they are used by all health-care professionals.
The current location of the children’s hospice near Tashkent is not its permanent home; it will be moved from this former COVID-19 hospital setting to the same site as the planned adult hospice. It is envisaged that this will serve as the main national hospice, with responsibility for training the workforce and organizing integrated palliative care across the country.
WHO’s work on palliative care in Uzbekistan
The cancer-control team at WHO/Europe supports policy development and offers technical advice and methodological guidance to strengthen health-care provision for improved childhood cancer diagnosis, treatment and outcomes throughout the WHO European Region. Uzbekistan is a focus country for WHO’s Global Initiative for Childhood Cancer. With the WHO Country Office in Uzbekistan and WHO/Europe’s palliative care team, the cancer-control team is working on improving access to and quality of palliative care for children and adults in the country.