Hospice: compassionate end-of-life care and services

Hospices have made it their task to care for terminally ill patients in their last phase of life in the sense of palliative care. There are outpatient, day-care and inpatient hospice associations, i.e. service providers in the hospice and palliative sector. A database for researching hospice and palliative care providers is provided by Wegweiser Hospiz- und Palliativmedizin Deutschland.

A hospice is an institution that pursues a concept of care for the dying and mourning. Hospices want to realize five quality criteria (according to Christoph Student, 2004):

• The sick person and their relatives are at the centre of the service
• Support is provided by an interdisciplinary team
• Involvement of voluntary escorts
• Palliative care (care for freedom from pain and quality of life) instead of medical cure, in short: quality of life instead of quantity of life.
• Grief counseling

In the hospice, dying people and their relatives receive support, advice and medical and nursing care. The control of various symptoms plays a major role, including pain therapy. However, the (expressed or presumed) will of the patient is paramount in all nursing and medical actions. Bereavement counselling is also offered for relatives.

The sponsors of these homes for end-of-life care are mostly non-profit associations, but also churches, charitable organisations and foundations. Medical care is provided in different ways. Some inpatient hospices are under medical management, others work together with local doctors in private practice, whereby the patient can assert his right to choose his own doctor. In this case, it is often the patient's long-time family doctor who takes over the medical and human support of his patient until the end of his life. This does not necessarily require specialist further training in palliative medicine, but it can be an advantage.

In Germany, an inpatient hospice is legally subject to the Nursing Home Act. However, some paragraphs do not have to be applied in the hospice.

In the Middle Ages, a hospital or hospitium was the name of ecclesiastical or monastic hostels for pilgrims (pilgrims' hostel), the needy (poorhouse), strangers (asylum, hotel) or the sick. In Austria and Switzerland, the term hospice is still used to describe lodging establishments - especially on Alpine passes - some of which were still run by monks. Such hospices offered travellers shelter and protection from harsh weather, and they have always been a place of encounter. Later, the term hospice changed to the term hospital, which is used today. From about 1500 onwards, special institutions for the incurably ill (Ospedali degli incurabili, Hospices des incurables, Hospitals for incurables) were established in Europe.

The original idea of "shelter" was taken up again in the 19th century. Among other things, hospitals were established specifically for cancer and tuberculosis patients, which provided care for incurable patients until the end of their lives. In 1842, Madame Jeanne Garnier founded a hospice in Lyon (France) that was specifically dedicated to the care of the dying. The oldest known institution to use the English term "hospice" in its modern sense, the Irish Sisters of Charity opened Our Lady's Hospice for the Care of the Dying in Dublin in 1879. From the late 19th century onwards, other hospices for the dying were founded, which can be regarded as precursors to the one in Sydenham, England.

United Kingdom

The modern hospice movement developed from England in the United Kingdom in the 1960s. In 1959, several articles by Cicely Saunders on the subject of Care of the Dying appeared in the Nursing Times, which received a positive echo in the medical journal The Lancet. Saunders had recognised that the services offered by the national health system did not meet the special needs of the dying, who hoped not only for medical treatment but also for care and spiritual support. Instead, the seriously ill felt compelled to subordinate their own wishes to the goals of medicine aimed at preserving and prolonging life. As a result, citizens founded an initiative for terminal care, which - initially only on an outpatient basis - looked after the needs of dying people. The term Hospice Care, which Saunders later coined for this work, harkened back to the medieval tradition of hospitality, where the transient - in this case, the patient - is afforded a hospitable welcome and a protective space without interfering with their personal goals. In 1967 she founded St Christopher's Hospice in Sydenham (near London), an institution where this idea was to be put into practice: an inpatient hospice. In view of the fact that this was a private initiative which could not expect any financial support from the health system, Saunders was mainly dependent on the commitment of volunteers who took on many of the tasks in the hospice free of charge. In addition to the volunteers, the hospice team was made up of professionals from various professions, including nurses, chaplains and social workers.

The aim should not be to cure an illness, but to alleviate the - not only physical - discomfort of a dying person, taking into account their social and spiritual needs. This end-of-life care approach became a fundamental feature of hospice care and later of palliative care, which, however, sees itself not only as an offering for the dying, but for all those affected by serious incurable illness. As medical director, Saunders also placed an emphasis on symptom control, particularly the treatment of pain, thus providing the impetus for the further development of palliative care, which had largely fallen into disuse.

In the meantime, St. Christopher's Hospice cares for about 2000 patients and their relatives per year. It was from there that today's hospice movement took its start. Thus the first US-American hospice was founded in New Haven in 1974. International hospice work has been strongly influenced by the work of Elisabeth Kübler-Ross. In Germany, Christoph Student, among others, contributed a great deal to the development of the hospice movement.

Germany

In 1738, an "Incurabelnhaus" was established in Augsburg, which took in the blind, the lame, epileptics, patients with incurable urinary calculi and cancer patients with foul-smelling ulcers, and provided them with nursing and medical care until their death. The Nuremberg hospital for the poor, Hundertsuppe, which opened in 1780 and was initially intended for needy, curable patients, can be regarded as a forerunner of modern hospices, because around 1800 most patients came to the hospital not "to be cured, but [to] die under benevolent care".

The first modern inpatient hospice in Germany was founded in 1986 in Aachen by the Oratorian Paul Türks (Haus Hörn). Unlike in the United Kingdom, it was attached to a retirement home and was run by a clergyman instead of a doctor. In the same year, the first independent facility with nine beds, the Hospice zum St. Franziskus, was opened in a former doctor's villa in Recklinghausen and is considered the prototype for inpatient hospices in Germany.

Subsequently, further inpatient hospices were founded, mostly by citizens' initiatives, associations and church institutions; initially financed almost exclusively by donations and supported by voluntary work. It was not until § 37 of the German Social Security Code (SGB V) was used to provide home nursing care that the financing of these projects became somewhat more secure, so that from the 1990s onwards the number of new hospices founded increased significantly. In addition, the need for hospice places increased, as there were hardly any adequate care options for the steadily increasing number of AIDS patients at that time. Some hospices specialized in this clientele, such as Hamburg Leuchtfeuer.

The German Hospice and Palliative Association (DHPV) was founded in 1992 by the hospital chaplain Heinrich Pera in Halle (Saale) under the name Bundesarbeitsgemeinschaft Hospiz (BAG Hospiz). The aim is to spread the hospice movement and to bring together those interested in it, as well as to jointly develop guidelines and recommendations for outpatient and inpatient hospice work. Members of the DHPV association held several talks with representatives of the health insurance funds and ministries as well as members of the Bundestag in order to create a legal basis for financing hospice work. This was achieved in December 1996 with the approval by the German Bundestag of § 39a of the SGB V, the practical implementation of which was laid down in the framework agreement between the BAG and the health insurance funds. In 2007, the name was changed from BAG Hospiz to DHPV. Together with the German Society for Palliative Medicine and the German Medical Association, the association has drawn up a charter for the care of seriously ill and dying people in Germany. It was adopted on 17 August 2010.

The German Hospice Foundation was founded in 1995 to represent the interests of the seriously and terminally ill. Since 2012, it has been called the German Foundation for Patient Protection. The foundation itself does not operate any hospice facilities, but, like the German Society for Palliative Medicine and the DHPV, advocates self-determination and care at the end of life and represents the interests of the seriously ill and those in need of care nationwide vis-à-vis politicians, health insurers and service providers. Like the other hospice and palliative associations, the foundation works on a social level to improve the situation for the seriously ill. Hospice as a way of life should become a reality for each of the approximately 800,000 dying people in Germany each year, is the core demand. To achieve this, it is necessary to implement the hospice concept wherever people die - whether in nursing homes, hospitals or at home.

In 1998, the first inpatient children's hospice, the Balthasar Children's Hospice (now the Balthasar Children's and Youth Hospice), opened in Olpe on the initiative of affected parents who had founded the German Children's Hospice Association in 1990.

Today, inpatient hospices are generally service providers of the health care system and are largely financed by the health insurance funds - also due to the constant political work of the German Society for Palliative Medicine, the German Foundation for Patient Protection and the DHPV.

Austria

The first steps in Austria were taken at the end of the 1970s under the auspices of Caritas Socialis. It was awarded the Prince Liechtenstein Prize in 1998 for its initiative for the inpatient hospice in Austria CS Hospiz Rennweg. The first inpatient hospice St. Raphael was established in 1992 at the Krankenhaus Göttlicher Heiland in Vienna. It was converted into a palliative care unit in 2003. There are now ten inpatient hospices for adults, seven of which are in Lower Austria alone, as well as one inpatient children's hospice (as of 31 December 2016). Depending on the provider and the province, different cost contributions are payable for use.