In solidarity. Hospice-palliative care in Poland

Od 1981 roku w Polsce działa opieka paliatywno-hospicyjna, a do jej powstania przyczynili się kardynał Karol Wojtyła - Papież Jan Paweł II, czy Dr Cicely Saunders. Ja od działań grupy wolontariuszy udało się dojść do działania kilkuset profesjonalnych ośrodków stacjonarnej i domowej opieki dla dorosłych i dla dzieci? Książka Solidarni jest pierwszą wydaną w języku polskim i angielskim ilustracją tego fenomenu. Składa się z czterech części. Pierwsza część jest opisem dziejów ruchu hospicyjnego w Polsce, z ukazaniem roli kościoła katolickiego i wpływem ruchu społecznego "Solidarność". System opieki paliatywno-hospicyjnej został po latach włączony do opieki zdrowotnej w Polsce, będąc dalej ruchem społecznym przez szereg akcji charytatywnych i edukacyjnych. Wspomnienia i przemyślenia 26 osób: wolontariuszy, pracowników i liderów opieki, ukazują ją z indywidualnych perspektyw. W Polsce działa ponad 400 ośrodków domowej i stacjonarnej opieki paliatywno-hospicyjnej, co stawia Polskę na pierwszym miejscu wśród krajów Europy Wschodniej (EAPC Atlas, 2013). 71 placówek podzieliło się historiami ich zmagań i sukcesów oraz wpływem na opiekę nad osobami u kresu życia. W kolejnej części zostały opisane organizacje koordynujące działania medyczne i opiekuńcze, a także edukacyjne i charytatywne. Publikacja kończy się listą wszystkich ośrodków paliatywno-hospicyjnych w Polsce. Książka Solidarni pozwala poznać wyjątkowe zjawisko rozwoju opieki paliatywno-hospicyjnej w Polsce. Czytelnik może śledzić sukces społecznego ruchu, który wypracował efektywną organizację i skuteczne metody kształcenia, ale stoi przed kolejnymi wyzwaniami. Doświadczenia z Polski mogą być przydatne w krajach borykających się z problemami transformacji ustrojowej, reform systemów opiekuńczych i potrzeby poprawy opieki nad osobami u kresu życia i ich rodzinami.More than 400 palliative and hospice centers, thousands of employees and volunteers forming interdisciplinary teams caring for the terminally ill and their families, and many thousands of people who have benefited from this care – such is the outcome of the over 30 years’ existence of the hospice movement and palliative medicine in Poland. Those years were filled with endeavors to give people approaching the end of their lives the possibility of dying with dignity, without pain, surrounded by their kin, with regard for their age, sex, religion or wealth. It was a time of a laborious building of social awareness and interpersonal solidarity towards the chronically ill and dying and their relatives, based on deeply humanist and Christian foundations. These were years of transformation, from the first volunteer teams made up of physicians, nurses, psychologists, social workers, priests and all the people of good will, to the formal organizational structures, embedded in the healthcare system. Years of co-operation, combining professional medical and non-medical assistance with the commitment of volunteers, while preserving the diverse qualifications and common goal of interdisciplinary teams. It is difficult to fit the experiences gathered for over 30 years into the pages of one book. It is hard to express in writing all the accompanying emotions. In this story there is enthusiasm about the discovery of new forms of work, there is belief and delight in creation but there is also anxiety about day-to-day functioning and concern about the ability to respond to patients’ needs in the best possible way... The editors’ intention was to present the history of the establishment of palliative and hospice care in Poland as broadly as possible: by identifying its sources and inspirations, through the personal experiences of people involved in end-of-life care and the stories of particular palliative and hospice centers and the organizations supporting them. We have tried to invite all the centers of stationary and home care for sick adults and children in Poland to participate in this book. We have invited both the veterans of care and newly opened facilities, both public healthcare institutions and non-public ones run by religious unions, foundations, associations and informal groups. The result is the effect of the work undertaken by large numbers of people from different parts of Poland. Like years ago, this time it was also purely voluntary work, time stolen from many other activities and obligations, a decision arising from the heart’s desire, a sense of responsibility and a need to share the truth about the h o s p i c e service. The first part of the book gives an outline of the history of the hospice movement in Poland, referring to a variety of human attitudes to the sick and dying throughout the ages, the Christian and humanist sources affecting the development of the hospice movement in Europe, and presenting the native inspirations for end-of-life care. It also presents the people and centers that it all stemmed from. What has had a special place in the story is voluntary service... The selfless commitment of thousands of people of diverse professions was the foundation of the movement at its inception and it continues to play a vital role in it today, being a distinguishing feature of the Polish hospice movement. The second part is filled with the personal stories and experiences of people who have made a unique contribution to its formation, shape and present role. It is made up of memories of people directly involved in patient care: doctors, nurses, psychologists, social workers, clergymen, nuns and people supporting these activities in different ways. The third part includes the stories of particular palliative and hospice centers, presenting their huge diversity: the organizational forms, forms of support and achievements, and the founders of care and its continuators. The accounts sent in bear evidence of the perseverance of palliative and hospice teams, their development and, in numerous cases, the broadening of the care provided and the forms of co-operation with local communities, volunteers, universities, research centers and other organizations and institutions. The last part is a presentation of the nationwide organizations supporting the palliative and hospice teams and centers. They have originated from the need to share knowledge and experience in the daily work for the terminally ill and their relatives. The projects implemented and actions taken by them strengthen the Polish hospice movement, significantly influencing its development. Team care of terminal patients in Poland is based on a strong tradition and culture of co-operation between specialists in different areas and volunteers, developed over the last 30 years. Its special merit was emphasized by Father Eugeniusz Dutkiewicz, the father of the Polish hospice movement, when he stated that nobody in this team would be able to help on their own, only the diversity of individuals, their qualifications, personalities, professions and philosophies provides the ability to meet a patient’s needs. A patient will find only one confidant in the team but their trust in them will infect all its members. The task of contemporary teams is to maintain this tradition and foster the development of end-of-life care based on hospice philosophy and the achievements of palliative medicine