Palliative care during humanitarian crisis: An inside view from Ukraine
– Dr Olena Riga (Ukraine), Ms Joan Marston (South Africa)
For Ukrainians and many people across the globe, we see the world before Thursday, 24th February, 2022, and after that. The world for us is accordingly divided into light and darkness.
Our society built a young country. Yes, in earlier times, Ukraine could not boast of having access to strong medicines, provide a sufficient level of medical education, ensure the availability and provisioning of some types of care including palliative care, and make available total access to painkillers. However, over time, these developments have taken place. These developments perhaps did not take place at the systemic level but sufficient advocacy for palliative care and support from international experts helped develop palliative care in Ukraine.
In Pre-war Ukraine, government financed packages of medical guarantees for mobile and inpatient palliative care for adults and children were available. Hospices and two mobile palliative services for children worked in Kyiv. There were two hospices for adults, a children’s hospice, a regional centre for palliative care for children, and mobile services working in the Kharkiv region. Palliative care for the adult population began to be created in Ivano-Frankivsk for the first time in Ukraine and this process was shared in many other regions.
We also had a loyal legislation on the prescription of narcotic analgesics to help people with pain among other countries of the post-Soviet space. We began to introduce the educational components of palliative care in undergraduate and postgraduate education for medical staff and held three national congresses on palliative care.
Once the war began and during Russian aggression, access to palliative care unfortunately depended on the area one was from – the area which was under Russian or Ukrainian control.
Our colleagues then became soldiers.
16 ordinary municipal hospitals in Kyiv started to receive patients in need of palliative care. They provided free telephone consultations, and took the elderly out of the hospice shelled by cluster rockets. Our heroic volunteers helped not only at the front and in the army, but they went on to help the most defenceless and weak people. We don’t know how many more of our people will die.
One family with young twins with cerebral palsy received care at the Regional Clinical Centre of Medical Rehabilitation and Palliative Care for Children (Kharkiv). The family contacted us about the impossibility of access to anticonvulsants and food, but since then there is no connection with this family at all!
During the bombing, the staff, children, and parents of the Centre for Medical Rehabilitation and Palliative Care for Children were in the cellar. During first 3 months of war, the bombing was seen at about 60 times per day. Disabled children and staff were forced to stay in cellars to take protection.
During this time, majority of oncology centres were also evacuated to the west together with orphanages. Ukrainian children with onco-pathology faced challenges on two fronts – Cancer and War. Most of them have been evacuated to special hospitals in Poland, The USA, Isreal, and others.
We recognise and understand that our people are receiving quality care in other countries. We acknowledge that this is a great burden on the health systems of all the recipient countries and really appreciate and extend our gratitude for this. Thanks to this, much grief and death has been avoided.
Pre-war ties are broken. Many parental organisations are temporarily out of business. There is very limited coordination of palliative care. But this is understandable. Under the current conditions, horizontal functioning at the community level is more acceptable, and more and more different organisations and self-help initiatives are emerging, including psychological ones to offer support. It is not possible to track the availability of all those who are in need of palliative care services however people who do have access to social networks can find information.
The humanitarian catastrophe also concerns the treatment of pain. For this, we helped draw up a pain management plan for our soldiers. For chronic patients in Kharkiv, a chatbot was organized with prescriptions, the location of pharmacies, and their opening hours. We ensured that this chat is not limited to only the Kharkiv regions. We admit that our society was not ready for pain relief to be available in a crisis. Perhaps humanity will learn from our experience.
There are limited resources for palliative care during the crises in Ukraine. Therefore, it is important to increase everyone’s knowledge about the necessary actions and solutions, and possible support when people are coming face-to-face with death.
It has now been more than 550 days of war… The below limitations have been seen since the early days of militaristic violence for palliative care.
- Telehealth and other communication points between patients and palliative care providers
- Knowledge in humanitarian crises
- Coordination of palliative care
- Information in communities
- Unpreparedness for a crisis
- Lack of adequate social assistance
- A large number of refugees among the staff
- Lack of psychological support
- Deficiency of bereavement support and service for ‘End of Life’
We are praying for Peace. We thank you all! Due to your support, we never give up!
About the Authors:
Dr Olena Riga is a Doctor of Medical Science, MD, Professor, Pediatrics № 1 and Neonatology Department, Center of Palliative Medicine, Kharkiv National Medical University, Kharkiv, Ukraine. She can be reached at yeletskayaelena@gmail.com / +380662884409.
Ms Joan Marston (RN MA) is on the Executive Committee at PallChase (Palliative Care in Humanitarian Aid Situations and Emergencies), and also a Honourary Consultant at the Kharkiv National Medical University at Kharkiv, Ukraine. She can be reached at pallchase.advocacy@gmail.com / +27822964367.