The hospice movement is concerned with improving the situation of the dying and their relatives and integrating death and dying into life. This is primarily served by terminal care in the sense of palliative care . The movement has been developing since the late 1960s, starting from England. There it was the nurse and doctor Cicely Saunders who (following the medieval meaning of the "hospice" not as a medical facility but as a place of care and support) founded the first inpatient hospice in the current sense in 1967 with the St. Christopher's Hospice thus sparking the global initiative. It made its greatest development in the 1970s in the USA (co-initiated by Elisabeth Kübler-Ross ), where a variety of different care models was created.
The hospice movement was u. a. the answer to a society that threatened to marginalize dying and the dying ever more. Thus, their main goal is to raise public awareness of dying as an important part of life in order to be able to support the dying and their families appropriately.
The hospice movement in Germany
Employees at the Paul Lechler Hospital in Tübingen got to know London's St Christopher's Hospice soon after it was founded. They implemented the knowledge gained there in their own hospital, initially against considerable resistance from their colleagues. Over time it became clear that caring for the dying and their relatives is one of the most fundamental tasks of medicine and nursing, which had been forgotten in modern times.
In 1971, the film "16 days to go - a death clinic in London", shot in St. Christopher's Hospice, caused great concern about the circumstances of dying. The translation of the English 'hospice' into 'death clinic' contributed to the fact that for a long time inaccurate ideas about hospice facilities prevailed and the term hospice only slowly gained acceptance. It was feared that the dying would lose hope, that they would be ghettoized and that the carers would be overwhelmed. On the other hand, the film showed accompanied dying, as many people wished for themselves. This was the impetus for these people to get involved in the hospice idea and to develop plans to make the situation more bearable for the dying and their relatives. The first hospice groups were founded as a civic movement that not only received no support from politics and churches, but was even blocked by them.
In 1984 the "Die at Home Working Group" was formed at the Evangelical University of Applied Sciences in Hanover under the direction of the doctor Johann-Christoph Student . In his subsequent publications he emphasized that it was not a question of creating new institutions, but of bringing the way of dealing with dying back into society. Nevertheless, the first state working groups as well as supra-regional initiatives such as "Omega - Living with the dying eV" (1985) and the "International Society for Dying Care and Life Assistance" (IGSL, 1986) were formed. Above all, "Omega - Living with the Dying eV" saw itself as a counterweight to the standpoint of the German Society for Human Dying, which was founded a few years earlier .
The civic or church-initiated outpatient hospice services were founded in more and more places . In 1986 the first inpatient hospice was opened in Germany, which was soon followed by other facilities.
In 1992 the “Federal Hospice Working Group” was founded as a nationwide umbrella organization (today the German Hospice and Palliative Association eV ). The working group worked together with other organizations for a legal regulation for the financing of hospice work. As a result of the efforts, the German Bundestag approved such a regulation in December 1996 (Section 39a of SGB V), whereupon a framework agreement was concluded between the Federal Hospice Working Group and the health insurance companies. Up to this point in time, outpatient and inpatient hospice work was mainly financed by donations and voluntary work. This has now been made considerably easier by subsidies from health and long-term care insurance funds. In-patient hospice patients still had to pay their own contribution, which varied depending on the level of care and daily requirement rate of the respective hospice.
The development of outpatient and inpatient hospices was influenced by the increased incidence of AIDS . The existing fears in society led to inadequate care for people with AIDS. Regional AIDS Aid groups worked with the hospice initiatives to improve the situation of dying AIDS patients. At the end of the 1990s, several inpatient hospices were founded that only accepted HIV-positive or AIDS patients.
In 2007, with the GKV Competition Strengthening Act (GKV-WSG), the legal right to specialized outpatient palliative care (SAPV) was added to the service of statutory health insurance ( , SGB V). However, the increasing demand for accompaniments could soon no longer be met, as the limited funds no longer allowed any further expansion of hospice work. In March 2009, the German Hospice and Palliative Association therefore called for a new regulation of Section 39a. The claim was supported by the results of studies on hospice work in Germany. Corresponding new regulations came into force in August 2009, which grants the service providers subsidies, but this is linked to certain conditions.
The demographic development makes an expansion of the care offers for seriously ill and dying people still necessary, so that an adjustment of the legal basis is necessary again and again. With the Hospice and Palliative Care Act (HPG), which came into force on December 8, 2015, relevant additions were made to statutory health insurance.
The basic principle of hospice work is that “the dying person and his needs” are the focus. His life must not be forcibly shortened or lengthened. Here, all levels of human existence (physical, psychological, social and spiritual level) to consider. Relatives and close friends are always included in the supply network; they are offered ( support ) in mourning even after the death of their loved one . The offer of help should be available around the clock. The team of helpers, which is formed in particular by volunteers ( honorary office ), must in turn be accompanied. The aim is also to remove the taboo from the terms death and dying through reintegration into society.
The facilities initiated by the hospice movement include hospice groups and outpatient hospice services that accompany dying people at home or in other facilities, as well as inpatient hospices . These institutions are sponsored by private associations (referred to as hospice associations ) and church associations such as Caritas , Malteser Hilfsdienst and Diakonie .
Other, pre-existing health care facilities integrate hospice content into their offerings, for example palliative medicine departments and palliative wards that implement the hospice concept in the hospital sector.
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