Because of poor infrastructure and scarce resources, many people in rural areas of Central and Eastern Europe are facing undignified death. The welfare system is struggling with well-being, not bothered with well-dying. Paweł is leading citizens and policymakers towards solutions that amplify the quality of life, even at its end.
The New Idea
“May you have a good death” – this old Eastern saying does not come true in the life of many, especially in rural areas. Accessibility of healthcare in the countryside is two times lower than in the urban areas. In Central and Eastern Europe (CEE), there are rural regions where access is even 79% lower than in urban areas of the same countries. The Podlasie region in Poland, as many other places in this part of the world, is deserted, as younger people leave, abandoning family elders. In remote areas, with poor infrastructure, the sick elderly people are left alone, with no access to medical care, physiotherapy, or necessary equipment. Therefore, in CEE life expectancy is shorter than in some more developed European countries. Still, in urban areas those people would live much longer and have a higher life quality.
Paweł believes that the quality of a society is defined by the way it takes care of its weakest members. He also understood that where the official healthcare system fails, the local resources need to be leveraged to provide solutions. He has diagnosed several systemic barriers and has been removing them, so that the local solutions become feasible. Above all, he is working on a mind-shift of decision-makers and the overall society – he proves that the dignity of human life is an important value for the overall quality of life of all members of a given society and shouldn’t be subject to the criteria of economic viability.
The Prophet Elijah Hospice is a new formula of innovative care, where everyone who needs help can get best quality services provided not only by doctors and nurses, but also from psychologists, physiotherapists, and persons taking on a new role created by Paweł – a caregiver. Caregivers are trained local community members who provide not only medical or nursing services but also respond to social or economic challenges such as energy poverty or loneliness. This system is possible thanks to the well-developed financing model that Paweł has built removing certain systemic, legal barriers and creating smart system of incentives for the local businesses. Additionally, in comparison to the “traditional” hospice care, in Paweł’s model, the costs of the provided care have decreased by about 1/3 mostly by leveraging people’s engagement and cutting administrative costs. Thanks to that, the Ministry of Regional Development of Poland has chosen this solution as one of the social innovations’ models for the country-wide replication funded by the national budget. Paweł has initiated cooperation to scale his solution also to Belarus and Ukraine.
Paweł aims to shift the mindset of people towards understanding the importance of quality of life and dignity of dying persons. As a part of his scaling strategy, Paweł’s organization provides training for other doctors and caregivers who could replicate his model. The Prophet Elijah Hospice also leads a coherent campaign, which includes advocacy as well as mainstream storytelling.
Access and quality of palliative and hospice care depends on availability, distance to the nearest city, and density of the population in the region. In Central and Eastern Europe (CEE), there are rural regions where access to healthcare is even 79% lower than in urban areas of those countries. Given the number of patients per 10,000 residents, significant differences in access occur both between patients from urban and rural areas, as well as between residents of individual provinces. More difficult access to medical services in rural areas is not only characteristic of Poland, but unfortunately, it is common in many places in Europe and around the world. When the system is not working, individuals need to rely solely on their families and social networks to provide a kind of hospice care for them. In the depopulated countryside, often the only person who can give support is one’s elderly spouse, but there are villages with only a few senior women left and very often they struggle not only with their own health, but also with the lack of stable energy connection, no or very limited access (as seldom as twice a week) to public transport or even lack of running water. Being terminally ill in such conditions is especially bitter and undignified. And yet, being taken away from one’s home to an institution in a city over 80 km away, means that the person will be not be in their safe well-known environment, which gives them the feeling of peace and belonging, influencing their wellbeing in their terminal period of life.
According to the 2019 Polish Supreme Audit Office report, the palliative and hospice care system does not provide access to adequate quality services for all patients who need such care. That is true because the list of diseases qualifying patients for state-funded palliative and hospice care according to Polish and European law is quite narrow. Nearly 90% of patients covered by this kind of care (83,000 in 2017) are cancer patients. The Polish Supreme Audit Office notes that 45,000 patients die annually diagnosed with non-cancer diseases – e.g., those suffering from heart or kidney failure – being ill with those diseases does not entitle them to a refunded palliative and hospice care even if patients need this kind of care.
Moreover, access to palliative and hospice care services is limited. Palliative and hospice care procedures are very specific because they are not aimed at saving lives but at ensuring decent conditions in the last stage of terminal illness. The Polish National Health Fund imposes many limitations on hospices, capping the number and type of health services provided; only life-saving procedures can be exercised above the contracted limits. When asked, 10 audited hospices reported that they had 763 people on a waiting list for palliative and hospice care as they were not able to grant them admission into their premises based on the contract they had with the Polish National Health Fund. All those people died without receiving the care needed. Finally, health services are designed in the profitability paradigm, which is reflected in providing services and its quality. In 80% of hospices checked, irregularities occurred in the organization of services provision. So, if one is lucky enough to be under hospice care, they still might not receive the minimal services needed.
All of that is a direct embodiment of considering death as a taboo in our culture. Our society declares that family is one of the most important values but at the same time we don’t find time, budgets and patience to acknowledge the importance of the quality of life of a dying person and thus we favor the economic arguments over the ethical ones.
As long as economic arguments prevail over humanitarian values of respect and care, one has to begin with direct service and damage control activities. This is where Paweł started his work by providing the best possible palliative and hospice care and creating a proof-of-concept model. The Prophet Elijah Hospice is a new formula of innovative care where everyone who needs help can get best-quality services not only by a doctor or a nurse but also from psychologists, physiotherapists, and persons taking on a new role invented by Paweł – the caregivers. Caregivers are responsible for basic nursing duties - helping to shower or changing bandages. They also help with everyday chores, such as chopping and bringing wood for the stove, cleaning the house or making meals. They also see the true needs of the patients they visit and make sure that The Prophet Elijah Hospice can provide them with not only medical equipment if needed – such as a respirator - but also a power generator and a fuel supply.
In a region where unemployment is very high, the possibility to work as a caregiver is an important addition to the household budget. The economic empowerment is crucial but what Paweł offers foremost is meaningful work – and that makes a big difference. The most important function of the caregiver is the human contact which is the most significant factor raising the quality of life of patients. Sometimes if a patient is being taken care of by a family member, usually an elderly spouse, the caregiver’s visit is an occasion to provide some life-hack support but also an element of the respite for the primary caregiver.
As of now, Paweł’s organization has improved the well-being and well-dying of over 430 elderly people and over 600 primary caregivers who have received significant support and know-how. Half of the patients of the Prophet Elijah Hospice do not qualify for state-funded hospice care according to the Polish regulations, but those patients and their primary caregivers need this support very much. The Prophet Elijah Hospice can take care of those patients thanks to a well-developed financing model. In comparison to the “traditional” hospice care, thanks to an effective organization and planning, the costs of the care provided are lower by about 30% than in the official healthcare system.
This formula of innovative hospice and palliative care, including the role of a caregiver, has been described as a replicable model of social innovation and, thanks to Paweł’s and his allies’ efforts, its implementation across Poland is funded by the Ministry of Regional Development. Paweł and his team have an assisting role in those implementations across Poland.
Besides the dissemination of the model, Paweł is engaged in the creation of common standards of palliative and hospice care in rural areas. Nationally recognized standards are designed to help to develop and assess such important topics as holistic care and include specific regional issues such as a lack of public transport or energy poverty. These standards are about to create a stronger healthcare structure ensuring high-quality health services where they matter the most. Paweł has initiated the establishment of a working group at the Human Rights Commissioner's office – convincing key actors that the dignity of dying people is a human rights’ issue – and is leading this effort.
All of this is meant to lead to a change in the way people perceive the importance of a dignified end of life of their elders. In order to do so, The Prophet Elijah Hospice provides training and other educational resources for all mentioned groups and involves key players, like the Supreme Medical Chamber or the International Federation of Medical Students Association. Through partnerships, they can provide training for several hundred students and medical practitioners every year. This effort is supported by an annual conference in Michałowo (the place where The Prophet Elijah Hospice is based), which has become a key event in the country for discussing the specificity of palliative and hospice care in rural areas. Over 10,000 participants from several countries have attended Paweł’s annual conferences so far and some crucial partnerships have been initiated during those conferences, such as the partnership with the Human Rights Commissioner’s office.
The Prophet Elijah Hospice facilitates community-building education to build trust and empower communities to get engaged in providing support. Paweł’s frame-changing effort is supported by communication campaigns dedicated to the wide public with well thought through, agile public relations and extremely wide media coverage with millions of viewers. The coverage of Paweł’s activities in October 2019 aired during the evening news program on public TV was watched by 1.83 million people. In the last two years, The Prophet Elijah Hospice has been part of all national news programs and most breakfast television shows. For Paweł, media is a tool for his frame-change work, but his media appearances also translate into an increasing amount of individual donations.
Paweł also sees the importance of working with children and parents, which is why he wrote a children's book published by a popular publisher to increase awareness among children and parents and facilitate conversation about death and dying.
Due to its unique location, just 25 km away from the border with Belarus, The Prophet Elijah Hospice is the ‘last’ hospice of the European Union. It has an impact on the EU’s Eastern neighbors - inhabitants of that region on both sides of Polish-Belarusian and Polish-Ukrainian border, due to similar geographical, economic, and political factors, are highly disadvantaged. Thanks to Paweł’s team, they have a chance to benefit from an increase quality of dying. The Prophet Elijah Hospice also has a contribution towards the changes in EU regulations. Paweł has built a vast coalition of hospices and orchestrated a co-creation of a huge proposal to the European Commission. The project involves an organization of meetings of working groups all over the European Union to highlight the specific conditions of palliative and hospice care in rural areas including low social capital, transport difficulties and energy poverty.
Paweł tried to get into medical school several times. Finally, he became a maxillofacial surgeon. He decided to join the staff of a head and neck cancer clinic and had a successful medical career. Yet, a significant group of his patients couldn’t be cured and had to live on with cancer till the end of their lives. It was a moment when he asked himself what happens to those people when they leave the hospital. To follow the urge to support them, he started working part-time in a hospice and decided to receive medical specialization of palliative care. It was then that he was informed that, as a maxillofacial surgeon, he was not allowed to receive palliative care specialization. Paweł led to a change of law and completed the palliative care education.
Before leaving Warsaw with 500 euro of a root fund and starting The Prophet Elijah Hospice in a distant rural part of Poland, he had prepared himself well. He graduated from a Healthcare Management postgraduate program and received a year-long training at Leadership School to get familiar with the civil sector. Paweł also prepared a ‘reverse business plan’ of how to start a rural hospice, in places where it’s most needed and least profitable. That’s why he moved to the eastern Poland, next to the border with Belarus, to support patients to whose life he cannot add years, but to whose last years he can add life.