hospice

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This article or paragraph presents the situation in Germany . Help us to describe the situation in other countries.

The St Christopher's Hospice in Sydenham (London) is a model for many hospices
St. Petersburg Children's Hospice

Hospice ( lat. Hospitium "hostel", "hospitality") is a facility for terminal care . In today's German-speaking countries, a hospice is usually used to describe an in-patient care facility that usually has only a few beds and is organized in a similar way to a small care home. The first inpatient hospice within the meaning of palliative care was opened in the United Kingdom in 1967 (1986 in Germany), and the first children's hospice was also established there in 1982 (1998 in Germany). In Germany there are now around 240 inpatient hospices (17 of them for children, adolescents and young adults) and more than 300 palliative wards in hospitals as well as over 1,500 outpatient hospice services (as of November 2018).

The designation “dying hospice” is not used by the providers and employees of these facilities, as one of the aims of the work there is that the dying can remain in their home or return to them if possible.
Therefore, in a broader sense , hospice denotes the conscious attitude that dying, death and mourning are part of life. The hospice movement emerged from this hospice idea , which reintegrates these issues into everyday social life in various ways, especially in medicine and care.

Basics

Hospices have made it their business to care for the terminally ill in their last phase of life in the sense of palliative care . There are outpatient, semi-inpatient and inpatient hospice associations, i.e. service providers in the hospice and palliative area. The Guide to Hospice and Palliative Medicine Germany provides a database for researching hospice and palliative service providers.

A hospice is an institution that pursues a concept of dying and grief counseling . Hospices want (according to Christoph Student , 2004) to implement five quality criteria:

  • The patient and his relatives are at the center of the service
  • Support is provided by an interdisciplinary team
  • Involvement of voluntary escorts
  • Palliative care (concern for freedom from pain and quality of life ) instead of medical cure (treatment aimed at healing), in short this means: quality of life instead of quantity of life
  • Grief counseling

In the hospice, the dying and their relatives receive support, advice and medical and nursing care. The control of the various symptoms plays an important role, including: a. the pain therapy . In all nursing and medical actions, however, the (expressed or presumed ) will of the patient comes first. In addition, grief counseling is offered for relatives .

These homes for end-of-life care are mostly non-profit associations, but also churches, non-profit organizations and foundations. Medical care is guaranteed in different ways. Some inpatient hospices are under medical supervision, others work with resident doctors on site, whereby the patient can exercise his right to a free choice of doctor. Then it is often the patient's long-standing family doctor who takes on the medical and human support of his patient until the patient's life. This does not necessarily require specialist training in palliative medicine , but it can be an advantage.

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

history

In the Middle Ages, a hospital or hospitium was the name of ecclesiastical or monastic hostels for pilgrims ( pilgrims' hostel ), needy ( poor house ), strangers ( asylum , hotel ) or the sick. In Austria and Switzerland, accommodation facilities are still run under the name hospice - especially on Alpine passes; partly still by monks . Such hospices offered travelers shelter and shelter from harsh weather, and they have always been a meeting place. Later, the term hospice was transferred to the term that changed to today's hospital or hospital . Since around 1500, special facilities for the terminally ill (incurable houses; Ospedali degli incurabili , Hospices des incurables , Hospitals for incurables ) have also been established in Europe .

The Franciscan Hospice Bad Gleichenberg (1888 to 2010)

The original idea of ​​"lodging" was taken up again in the 19th century. Among other things, hospitals were set up specifically for cancer and tuberculosis patients, which looked after incurable patients until the end of their lives. In 1842 Madame Jeanne Garnier founded a hospice in Lyon (France), which was specifically dedicated to caring for the dying. The Irish Sisters of Charity opened Our Lady's Hospice for the Care of the Dying in Dublin in 1879 as the oldest known institution that used the English term "hospice" in its current sense . From the late 19th century onwards, further hospices for dying were established, which can be seen as a forerunner to the establishment in Sydenham, England.

United Kingdom

The modern hospice movement developed, starting from England, in the United Kingdom in the 1960s. 1959 appeared in the Nursing Times several articles by Cicely Saunders on the subject of Care of the Dying (translated as "care for the dying"), which found a positive response in the medical journal The Lancet . Saunders had recognized that the national health system's services did not meet the special needs of the dying who wanted not only medical treatment, but also care and emotional support. Instead, the seriously ill felt compelled to subordinate their own wishes to the goals of medicine, which is 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, tied back to the medieval tradition of hospitality , where the traveler - in this case the patient - is given a hospitable reception and a protective space without affecting his or her personal goals. In 1967 she founded the St Christopher's Hospice in Sydenham (near London), an institution where this idea should be put into practice: an inpatient hospice. Given the fact that it was a private initiative that did not expect any financial help from the health system, Saunders relied above all on the commitment of volunteers, who took on much of the work in the hospice free of charge. In addition to the volunteers, the hospice team was made up of professional employees from various professional groups, including nurses, pastors and social workers.

The aim should not be to cure an illness, but to alleviate the - not only physical - ailments of a dying person, taking into account his or her social and spiritual needs. This end of life care attitude became a fundamental characteristic of hospice care and later palliative care , which, however, is not just an offer for the dying, but also for all those affected by a serious incurable disease. As medical director, Saunders also placed a focus on symptom control, in particular on the treatment of pain, which initiated the further development of palliative medicine , which has largely been forgotten .

In the meantime, around 2000 patients and their relatives are cared for at St. Christopher's Hospice each year. This is where today's hospice movement began. In 1974 the first US hospice was built in New Haven . The international hospice work was strongly influenced by the work of Elisabeth Kübler-Ross . In Germany u. a. Christoph Student contributed a lot to the development of the hospice movement.

Germany

In 1738 an “Incurabelnhaus” was built in Augsburg, which took in the blind, lame, epileptics, patients with incurable urinary stones and cancer patients with foul-smelling ulcers and looked after them with nursing and medical care until their death. The Nuremberg Poor's Hospital Hundertsuppe , opened in 1780 and initially intended for needy, curable sick people , can be regarded as a forerunner of modern hospices, because most patients were admitted around 1800 not “to be curated, but [to] die under caring care” .

The first modern inpatient hospice in Germany was founded in 1986 in Aachen by the oratorian Paul Türks ( Haus Hörn ). Unlike the UK, 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, which is considered a prototype for inpatient hospices in Germany, was opened in a former doctor's villa in Recklinghausen with the hospice for St. Francis .

As a result, further stationary hospices emerged, mostly founded by citizens' initiatives , associations and church institutions; initially financed almost exclusively by donations and supported by volunteer work. The financing of these projects only became somewhat more secure when Section 37 SGB V was used on home nursing, so that the number of start-ups increased significantly from the 1990s onwards. In addition, the need for hospice places increased, as there were hardly any adequate care options for the then steadily increasing number of AIDS sufferers . Some hospices specialize 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 of the Federal Working Group Hospice (BAG Hospiz) . The aim is to spread the hospice movement and bring together those interested in it, as well as jointly developing guidelines and recommendations for outpatient and inpatient hospice work. Association members of the DHPV held several discussions with representatives of the health insurance funds and ministries as well as members of the Bundestag in order to create a legal basis for the financing of hospice work. This was achieved in December 1996 with the approval of the German Bundestag for Section 39a of 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 critically ill and dying people in Germany . It was passed on August 17, 2010.

In 1995 the German Hospice Foundation was established to represent the interests of the seriously ill and the dying. Since 2012 it has been called the German Foundation for Patient Protection . The foundation does not operate any hospice facilities itself, 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 politics, 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. The core requirement is that hospice as a way of life should become a reality for each of the approximately 800,000 dying people in Germany each year. For this it is necessary to realize the hospice idea wherever people die - be it in nursing homes, in hospitals or at home.

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

Today, inpatient hospices are usually health care providers and are largely financed by the health insurance companies - 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 . She was awarded the Prince Liechtenstein Prize in 1998 for her initiative for the inpatient hospice in Austria, CS Hospiz Rennweg . The first inpatient hospice St. Raphael was established in 1992 at the Göttlicher Heiland Hospital 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, and one inpatient children's hospice (as of December 31, 2016). Depending on the provider and federal state, different cost contributions have to be paid for the use.

Meaning for life

Hospices want to reintegrate dying into life, with the focus on the needs of the sick and their relatives. The facility serves as a shelter from unwanted over-therapy or other stressful factors. Therapeutic and nursing measures are tailored to what the patient perceives to be useful and appropriate for himself. In these cases, this leads to the fact that certain actions are completely dispensed with, which in facilities with curative objectives would, if necessary, also be carried out against the will of the patient.

At the same time, a piece of normality should be conveyed, which is often no longer given in the hospital or at home (due to excessive demands on the caring relatives). According to surveys, around 90 percent of all people want to die at home. In fact, according to estimates, around 50 percent of people die in hospitals and a further 20 percent in nursing homes (a rate of 70 percent was given for Berlin in 2007). Hospices want to be a decent alternative if hospital treatment is no longer wanted or is not necessary from a medical point of view (and is therefore no longer paid for by the health insurances), but a nursing home is out of the question due to inadequate medical and nursing care options in the event of severe illness comes.

Admission requirements

Germany

The prerequisite for admission to an inpatient hospice is that the patient suffers from an incurable disease that will lead to death in the foreseeable future and which cannot be cured. This can be an advanced cancer disease, AIDS in the last stage of the disease, diseases of the nervous system with progressive paralysis ( e.g. amyotrophic lateral sclerosis ), or advanced chronic kidney, heart, digestive tract or lung diseases. A disease is considered incurable if, according to the generally recognized state of medicine, treatment measures cannot lead to the elimination of this disease. It is progressive if its course cannot be counteracted sustainably in spite of medical measures according to the generally recognized state of medicine.

If hospital treatment is not necessary or should be avoided with such a diagnosis, but outpatient care with accommodation in the own household, with relatives or in a nursing home appears to be inadequate, palliative medical and nursing care may be indicated. Full inpatient hospice care must be prescribed by a doctor, stating the diagnosis, prognosis and further details on the justification (for example, stressful symptoms such as shortness of breath and fear or tumors that proliferate and disintegrate and require special wound care). This medical certificate to determine the necessity of full inpatient hospice care according to § 39a Paragraph 1 SGB V is required so that the facility can submit the corresponding application to the health insurance company to cover costs ( application for fully inpatient hospice and nursing services according to § 39a Paragraph 1 SGB V and § 43 SGB XI ). The ordinance and the corresponding application approval are initially valid for 28 days and may be extended before this period expires if the requirements are still met.

The restrictions are necessary because the statutory health insurance funds finance a large part of the daily requirement rate. It is recommended that privately insured persons get a cost guarantee from their health insurance company before admission to the inpatient hospice, as not every insurance company will cover the costs invoiced. The purchase of a hospice care place is excluded by the admission conditions in order to keep hospice places free for those who need special care.

financing

Germany

Until July 2009, hospice patients paid an average of seven percent of their own, which is no longer applicable by a resolution of the German Bundestag on June 18, 2009. Since August 1, 2009, the health insurances have taken over 90 percent of the eligible costs, of which, depending on the care level, a part was borne by the care insurance . Inpatient hospices still had to pay ten percent of the care rate themselves. The statutory ten percent co-payment of the inpatient hospices was regularly rated as unrealistic. In fact, hospices would sometimes bear 30 percent of the costs, which is due to the unsuccessful negotiations with the health insurance companies about the daily requirement rates.

In December 2015, the Hospice and Palliative Care Act (HPG) was passed ( Federal Law Gazette I p. 2114 ). Among other things, the law stipulates that health insurance should cover 95 percent of the eligible costs of inpatient hospices; in addition, hospices that were previously financed below average receive a higher daily care rate for each insured person admitted there. This reduced the proportion of costs that the respective hospice had to bear itself to five percent. This will continue to be obtained mainly through donations, but also collected through volunteer work. Donations are also used when patients are admitted who are not insured for various reasons (e.g. people without a permanent address).

The patient's own contribution to medication and medical aids costs, which is also usual in the domestic area, must, however, be borne by the patient if they are not exempt from the additional payments .

Inpatient hospices in Switzerland

There are nine inpatient hospices in Switzerland, some of which use this designation in their facility names. The first facility of this kind was opened in 1986 in Basel as the Hildegard Hospiz (today the Hildegard Palliative Center ).

Since the services offered by inpatient hospices are not uniformly regulated and in order to differentiate them more clearly from other institutions, the nomenclature in Switzerland provides for hospices to be designated as socio-medical institutions with a palliative care mandate . As such, they belong to the long-term care sector and are financed differently than acute care facilities that have a hospital structure with a palliative care mandate . In addition, there are day / night structures that correspond to the day and night outpatient hospices.

In 2015, the umbrella organization Hospize Schweiz was founded in Zurich's Lighthouse, which, together with its members, worked out the definition and criteria for inpatient hospices.

literature

  • J.-C. Student (Ed.): The Hospice Book. 4th, expanded edition, Lambertus Verlag, Freiburg 1999.
  • Federal Working Group Hospice e. V. (Ed.): Inpatient hospice work. Basic texts and research results on hospice and palliative work, part 2. The Hospiz Verlag, Wuppertal 2004, ISBN 3-9808351-8-9 .
  • Federal Working Group Hospice e. V. (Ed.): Help at the end of life. Hospice work and palliative care in Europe. (= Series of publications of the Federal Hospice Working Group. Volume VII). The Hospiz Verlag, Wuppertal 2004, ISBN 3-9810020-0-8 .
  • Rochus Allert among others: Success factors for hospices. Research results on quality and costs. (Ed. By: Bundesarbeitsgemeinschaft Hospiz eV) (= series of publications by the Bundesarbeitsgemeinschaft Hospiz. Volume VIII). The Hospiz Verlag, Wuppertal 2005, ISBN 3-9810020-2-4 .
  • Christine Pfeffer: People still die better here than anywhere else. An ethnography of inpatient hospice work. Verlag Hans Huber, Bern 2005, ISBN 3-456-84244-9 .
  • Peter Godzik : Committed to the hospice. Experience and impulses from three decades . Steinmann-Verlag, Rosengarten b. Hamburg 2011, ISBN 978-3-927043-44-2 .
  • Andreas Heller, Sabine Pleschberger, Michaela Fink, Reimer Gronemeyer: The history of the hospice movement in Germany. der hospiz verlag, Ludwigsburg 2012, ISBN 978-3-941251-53-3 .

Web links

Commons : Hospice  - collection of pictures, videos and audio files
Wiktionary: Hospice  - explanations of meanings, word origins, synonyms, translations

Individual evidence

  1. ↑ Numbers and facts. DHPV.de. Retrieved November 24, 2018.
  2. ↑ Michael Stolberg : The history of palliative medicine. Medical care for the dying from 1500 until today. Mabuse-Verlag, Frankfurt am Main 2011, ISBN 978-3-940529-79-4 , in particular pp. 17-19 and 192-231.
  3. ^ A. Kolbe: Companion for the dying. Urban & Fischer, Munich 2008, p. 12.
  4. ↑ JC Student, A. Mühlum, U. Student: Social Work in Hospice and Palliative Care. Ernst Reinhardt Verlag, Munich 2016, pp. 13–15.
  5. ↑ Service providers in the areas of nursing, hospice and palliative care. stiftung-patientenschutz.de. Retrieved April 18, 2016.
  6. ↑ wegweiser-hospiz-und-palliativmedizin.de . Retrieved April 18, 2016.
  7. ↑ Heimaufsicht.de. Retrieved April 18, 2016.
  8. ↑ Heimgesetz (HeimG) on gesetze-im-internet.de. Retrieved April 16, 2016.
  9. ↑ Michael Stolberg (2011), pp. 202-210.
  10. ↑ Michael Stolberg (2011), pp. 212-226.
  11. ↑ Michael Stolberg (2011), p. 229.
  12. ^ Tim M. Healy: 125 years of caring in Dublin: Our Lady's Hospice, Harold's Cross, 1879-2004. Dublin 2004.
  13. ^ Clare Joanne Humphreys: “Undying spirits”: religion, medicine and institutionalized care of the dying 1878-1938. Phil. Diss. Sheffield 1999.
  14. ↑ Michael Stolberg (2011), pp. 226-231 ( The first dying hospices ).
  15. ^ Caroline Richmond: Dame Cicely Saunders, founder of the modern hospice movement, dies. On bmj.com on July 18, 2005 ; accessed on January 15, 2019
  16. ↑ C. Saunders: Care of the Dying. In: Nursing Times, October 1959, Vol. 9, pp. 960-61
  17. ^ Peter Godzik: The hospice movement in the Federal Republic of Germany (PDF). In: Texts from the VELKD. 47/1992, p. 4 and 5. Accessed April 16, 2016.
  18. ^ A b c John Davy, Susan Ellis: Counseling Skills in Palliative Care. Open University Press, Philadelphia 2000; Pp. 2-5
  19. ↑ St Christopher's Hospice - History
  20. ↑ Michael Stolberg (2011), p. 18.
  21. ↑ Michael Stolberg (2011), p. 206 f.
  22. ↑ Michael Stolberg: Europe's oldest dying hospice? The Nuremberg hospital “Hundertsuppe”, 1770–1813. In: Medicine, History and Society , Volume 28, 2009, pp. 153–178.
  23. ↑ Michael Stolberg (2011), p. 201 f.
  24. ↑ Oratorium Aachen on oratorium.org, accessed on December 4, 2017
  25. ↑ Rainer Sabatowski, Gerda Graf: Inpatient facilities, outpatient palliative and hospice services. In: Eberhard Aulbert, Friedemann Nauck , Lukas Radbruch (eds.): Textbook of palliative medicine. Schattauer, Stuttgart 2007, p. 110
  26. ↑ About us: Find out more about Haus Hörn. At haus-hoern.de, accessed on December 4, 2017
  27. ↑ 30 years of the hospice - a stroke of luck for the city. On franziskus-hospiz.de, accessed on December 4, 2017
  28. ^ Johann Christoph Student : Palliative Care in the inpatient hospice. In: Barbara Steffen-Bürgi, Erika Schärer-Santschi, Diana Staudacher, Settimio Monteverde (Eds.): Textbook Palliative Care. Hogrefe Verlag, Bern 2017
  29. ↑ charta-zur-betreuung-sterbender.de. Retrieved April 18, 2016.
  30. ↑ Austria's first hospice celebrates its anniversary with a jazz brunch. On erzdioezese-wien.at, accessed on December 4, 2017
  31. ↑ Hospice data report on hospiz.at, accessed on December 4, 2017
  32. ↑ Udo Ludwig, Barbara Schmid: Mummy on ward. In: Spiegel Online . March 14, 2015, accessed September 18, 2019 .
  33. ↑ Disregard of living wills in practice. In: Ernst Ankermann : Allowing to Die: Self-Determination and Medical Help at the End of Life. Ernst Reinhardt Verlag, Munich, Basel 2004, pp. 96-99 ISBN 3-497-01693-4
  34. ↑ Resolution to change the Uniform Evaluation Standard (EBM) with effect from October 1, 2013 (PDF). Retrieved November 22, 2013.
  35. ↑ Forms Medical certificate to determine the need for full inpatient hospice care and application for fully inpatient hospice and care services ( Memento of the original from October 5, 2015 in the Internet Archive ) Info: The archive link was automatically inserted and not yet checked. Please check the original and archive link according to the instructions and then remove this notice. (PDF). lukas-hospiz.de. Retrieved April 18, 2016. @1@ 2Template: Webachiv / IABot / www.lukas-hospiz.de
  36. ^ Information from the German Hospice and Palliative Care Association on the reorganization of the financing of outpatient and inpatient hospice work resolved by the German Bundestag on June 18, 2009 (PDF; 162 kB). dhpv.de. Retrieved April 16, 2016.
  37. ↑ Results and effects of the legislative changes §39a SGB V, p. 5.
  38. ^ Bernd Kastner: Hospice in Munich. Farewell with dignity. Süddeutsche Zeitung . February 4, 2013, accessed April 18, 2016.
  39. ↑ Bundestag passes a law to improve hospice and palliative care. Federal Ministry of Health. November 5, 2015, accessed April 18, 2016.
  40. ^ Palliative care law passed: More money for caring for dying people , SPIEGEL ONLINE. November 5, 2015. Retrieved August 7, 2018. 
  41. ↑ Statement by the German Hospice and Palliative Association on the Federal Ministry of Health's draft bill for a law to improve hospice and palliative work in Germany (Hospice and Palliative Act - HPG). dhpv.de. Retrieved April 18, 2016.
  42. ↑ J.-C. Student (Ed.): The Hospice Book. Lambertus, Freiburg 1999, p. 204 ff.
  43. ^ The Elisabeth Kübler-Ross Working Group: Hospices and Hospice Associations in Switzerland. Retrieved November 23, 2018
  44. ↑ Palliative Center Hildegard: History. accessed on November 24, 2018
  45. ↑ Federal Office of Public Health (FOPH), palliative ch and Swiss Conference of Cantonal Health Directors (GDK) (ed.): Care structures for specialized palliative care in Switzerland. Bern 2014, pp. 20-21. Retrieved November 23, 2018
  46. ↑ Federal Office of Public Health (FOPH), palliative ch and Swiss Conference of Cantonal Health Directors (GDK) (ed.): Care structures for specialized palliative care in Switzerland. Bern 2014, p. 23. Retrieved on November 23, 2018
  47. ↑ Umbrella Association Hospices Switzerland Accessed on November 23, 2018