The development of palliative care in Siberia

Categories: Care, Community Engagement, Featured, and Opinion.

Help is Coming

At the end of last year, on December 5, 2022, in Moscow, within the framework of the #WEARETOGETHER International Forum of Civic Participation, which brought together volunteers from more than 45 countries, representatives of socially oriented businesses, as well as journalists and bloggers, the winners of the International Award #WEARETOGETHER were awarded. In the Non-profit organizations category, in the Health of the nation nominations, the winner was Help is Coming project of ANCO Palliative Care Centre – Hospice named after Vasily and Zoya Starodubtsevs (Zheleznogorsk t., Krasnoyarsk Krai). This is a project of this non-profit organization dedicated to the development of palliative care in Siberia, which was recognized as the best volunteer medical project in Russia.

The #WEARETOGETHER national Award lasted all year long in 2022. Some 5,013 non-profit organizations from all regions of the Russian Federation took part in the competition. More than 33,437 social volunteer projects were presented.  The contest was arranged in several stages. Participants performed various tasks. The winners were determined by the jury and the online popular vote.

When handing the grant to the representative of the ANCO Palliative Care Centre – a Hospice named after Vasily and Zoya Starodubtsevs at the forum to the Chief physician for the implementation of the project Anatoly Starodubtsev, the Deputy Prime Minister of Russia Tatyana Golikova said, “Thank you for the great work that you are doing, and for your huge soul. There is nothing more precious than human life. The fact that you save and give a chance and happiness to lives is a great thing.”

The #WeareTogether Award

The #WEARETOGETHER International Award is dedicated to civic contribution to the achievement of Russia’s national development goals 2030. The idea behind the award is to identify leaders of social change from among non-profit organizations, volunteers, businesses and the community of journalists, uniting them into strong teams of #WEARETOGETHER clubs in all regions of the country and supporting their initiatives. The main purpose of the Award is to recognize and support leaders of socially significant initiatives aimed at helping people and improving the quality of life in Russia and the world.

Volunteer Hospice

The idea of creating a volunteer hospice in Zheleznogorsk solidified in the hearts of its Director Viktor Starodubtsev and his brother Anatoly, who later became the head physician of the institution, when unfortunate events came upon their family. Their parents died one after another in unbearably difficult, moral and physical agony. They gave their sons the instruction to help seriously ill fellow countrymen. A week after their father’s funeral, Viktor Vasilyevich Starodubtsev made a final and irrevocable decision on founding a hospice.

After his parents passed away from oncological diseases, V.V. Starodubtsev, in 2011, at his own expense, organized the only socially oriented, autonomous, non-profit medical organization in the Krasnoyarsk Krai – Palliative Care Center – Hospice named after Vasily and Zoya Starodubtsevs (Hospice Centre), which provides palliative medical care (PMC) to incurably ill citizens on a charitable basis by medical specialists and volunteers. Under his leadership, the Hospice Centre provides medical care to patients in need of PMC, both in equipped palliative care rooms and at their place of residence. The Hospice Centre has a license to carry out medical activities, trained personnel, specially equipped premises, and two special vehicles for rendering mobile care and patient transportation.

Under the leadership of Starodubtsev V. V. since 2020, the Hospice Centre the non-profit organization has been working together with the Krasnoyarsk Krai Ministry of Health to develop palliative care in Zheleznogorsk CATT, Sosnovoborsk town and Berezovsky district of the Krasnoyarsk Krai. This is the contribution of our organization to the implementation of the Healthcare national project, which is being implemented in Russia.

About the Project

Palliative care is in its infancy in Krasnoyarsk with a population of about 3 million people. There is only one inpatient hospice that can accommodate 30 people in Krasnoyarsk city for the vast territory of the Krai. The establishment of new hospices requires significant financial resources for the design and construction of such facilities. Patients need urgent care and they can’t wait. Therefore, the volunteers of the Hospice Centre developed the project ‘Help is coming!’

“When our parents were ill, we used to come to the hospital and took care of them, but other patients were left without the help of their relatives, so we decided to help them as well. Our organisation has been working on this project since 2012. During the implementation of the project, palliative care was provided by the visiting service of the organization at the patient’s residence. After winning the #WEARETOGETHER international award, our project received state grant support.”

The necessity and relevance of the project is associated with many reasons. The region suffers from a shortage of palliative care medical staff. No medical university in Siberia trains palliative care doctors yet. Therefore, there are no palliative care doctors in the hospitals of Zheleznogorsk, Sosnovoborsk towns and Berezovsky district of the Krasnoyarsk Krai. Medical institutions are not equipped with the necessary special equipment to support seriously ill patients. The funds that are allocated for the development of palliative care are not sufficient.

Often, people suffering from serious illnesses do not have access to services related to relieving pain symptoms, providing care and maintaining a normal quality of life. In such situations, the relatives, who do not have any training try to provide care for the seriously ill people on their own, and are often engaged in their main jobs, which affects the quality of patients’ lives.

Therefore, non-profit organisations and volunteers are engaged in the organization of palliative care in Russian territories. The goal of Help is coming is to provide palliative medical care and social assistance to terminally ill people in three territories of the region: Zheleznogorsk, Sosnovoborsk towns, and Berezovsky district of the Krasnoyarsk Krai.

The project has 14 partners: (medical, religious, non-profit and commercial, public organizations, volunteer medical specialists), 12 volunteer doctors and 37 volunteers, who want to help sick people are involved. Some 382 cancer patients and their relatives are the beneficiaries of the project.

For the purposes of attracting the attention of the inhabitants of the region to volunteer activities to help sick people, the project envisages an information campaign in newspapers, television, the Internet, and social networks. This will help the organization attract new volunteers. And to collect charitable donations for incurably ill people.

It is very difficult to find volunteers, who work with seriously ill people. This is associated with the fact that not every volunteer can endure the agony and suffering of cancer patients. Therefore, classes are planned at the volunteer school for new volunteers providing medical care and social assistance in our organisation. Within the Help is Coming project, we are planning to produce summer and winter uniforms and purchase personal protective equipment. The medal of kindness will be made to award the best volunteers during the project.

Medical volunteers of the centre visit seriously ill people in Zheleznogorsk, Sosnovoborsk towns and Berezovsky district of the Krasnoyarsk Krai within the framework of the project and provide them with the necessary assistance: therapeutic and preventive, social, deliver care products. The reception of complaints and appeals from patients is organised, which will be the basis for individual determination of the type of care to be provided.

In accordance with Russian standards of palliative care, the volunteer medical staff organises pain syndrome relief and medical patronage of cancer patients. They render training of relatives of patients on the rules of patient care. The involved volunteers provide social assistance to patients and their relatives on the delivery of care products, and necessary medical equipment. They help to clean the apartment and put things in order. They prepare food for the sick and take patients for walks.

During the project, various religious concessions provide the patients and their relatives with psychological support and assistance. Considering that there are very few such organizations in Siberia, the project provides for the extension of the experience of the ANCO Palliative Care Center-Hospice named after Vasily and Zoya Starodubtsev on the project Help is Coming in other Siberian regions.

During the work of the project in 2022, we managed to provide 800 medical and social services, which will help reduce the workload of the ambulance service by 25-30%, the workload of district doctors and nurses by 30%, and the workload of social services by 20-25%.

We hope that our experience will be spread all over Russia. It shows that, unlike Russian capitals and large cities, where huge state budgets and sponsor funds are invested in palliative care, in small towns with little material support, it is possible to develop palliative care on a volunteer basis based on volunteerism, unselfishness, mutual assistance, and charity. It’s a lot more difficult than with good funding, but it’s indeed possible. We hope that winning the competition will help the development of palliative care in the Krasnoyarsk Krai.

Our project can become a pilot in the region, and the experience of its implementation will be extended to other Siberian territories, where palliative care development is taking its first steps.

Our organization will continue to fulfil the wishes of our parents. We support our countrymen living with life-limiting conditions and their relatives. Those, who are scared, feel pain and also those who have no hope left at all, but there is still a glimmer of life that needs to be lived with dignity, until the very end.

 

 

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