German Patient Protection Foundation

The Deutsche Stiftung Patientenschutz (German Patient Protection Foundation), formerly known as the Patientenschutzorganisation Deutsche Hospiz Stiftung and originally as the Deutsche Hospiz Stiftung, is a German non-profit foundation dedicated to representing the interests of severely ill, care-dependent and dying people. It was founded in 1995 by the Malteserorden Deutschland Werke e.V., which provided initial seed funding. The foundation is headquartered in Dortmund and operates nationwide across Germany. The foundation positions itself as an independent advocate rather than a self-help organisation of patients. Because severely ill, care-dependent and dying people cannot organise themselves, the foundation describes its role as that of a "fachkundige Beraterin, erfahrene Fürsprecherin und starke Lobby" (expert adviser, experienced advocate and strong lobby) on their behalf. It seeks to influence politics, health insurers and service providers to improve the healthcare system in the interest of those in need of care and the dying. Its independence is central to its identity. According to the foundation, it accepts no state funding, no money from health insurers or service providers, and no funds from churches or public authorities. Instead it finances itself exclusively from the interest on its endowment, donations and the contributions of more than 55,000 members and supporters. This funding model is intended to allow it to assert the rights of the severely ill, care-dependent and dying against service providers and policymakers without conflicts of interest. The foundation's practical work is delivered through several services. The nationwide Patientenschutztelefon (patient protection telephone) offers free advice to those affected and their relatives on questions of advance directives, serious illness and care, ranging from counselling on living wills to direct intervention in conflict cases. The Schiedsstelle Patientenverfügung (arbitration body for advance directives) helps resolve disputes between doctors and relatives or legal representatives over the interpretation of a living will, reviewing each case within two working days according to the foundation. The foundation also provides help with insurance questions, such as benefit claims, hospice funding, care levels and the approval of aids, as well as psychosocial support. On the political level, the foundation campaigns for a fundamental change in the healthcare of the dying. It has called for an action plan for palliative care, arguing that far too few dying people in Germany receive palliative support, and it advocates for mobile palliative medical and nursing teams deployed where people actually die — in nursing homes, hospitals and at home. The foundation rejects a right to active euthanasia and demands that it remain a criminal offence in Germany. It has also spoken publicly on issues such as the feared hidden triage of COVID-19 patients in nursing homes. The foundation is governed by a sole board member (Alleinvorstand) and a seven-member foundation council (Stiftungsrat). Eugen Brysch has served as board member and public voice of the organisation, and Inken Gallner has chaired the foundation council. Its statutes continue to restrict its clientele to severe cases.

The Deutsche Stiftung Patientenschutz was founded in 1995 as the Deutsche Hospiz Stiftung by the Malteserorden Deutschland Werke e.V., which provided initial seed funding. From the outset the foundation was conceived as an advocacy organisation for severely ill, care-dependent and dying people rather than as a self-help group or an umbrella body for hospice institutions. In 2009 the organisation was renamed Patientenschutzorganisation Deutsche Hospiz Stiftung. According to the foundation, this change was intended to underline that it did not see itself as an umbrella association or interest representation of hospice facilities, but as a spokesperson for severely ill people. In September 2012 the organisation announced that it would in future be called Deutsche Stiftung Patientenschutz. This name, which it retains, reflects the broadening of its self-understanding from hospice-focused work to general patient protection for severe cases. Over the years the foundation built a nationwide service infrastructure. Its Patientenschutztelefon offers free advice across Germany, with telephone numbers listed for Dortmund, Berlin and Munich. The Schiedsstelle Patientenverfügung provides arbitration in disputes over the interpretation of advance directives, and the foundation also advises on insurance and benefit questions and provides psychosocial support. Financially, the foundation moved from initial seed funding by the Malteserorden to a model based exclusively on the interest from its endowment, donations and the contributions of more than 55,000 members and supporters. It explicitly forgoes money from service providers, health insurers, churches and public authorities in order to preserve its independence. The foundation is governed by a sole board member and a seven-member foundation council. Eugen Brysch has been the public face and board member of the organisation, while Inken Gallner has chaired the foundation council; Harald Schliemann is a former chair of the council. Its statutes continue to restrict its clientele to severe cases. In its public advocacy the foundation has repeatedly addressed end-of-life care in Germany. It argues that of the roughly 870,000 people who die in Germany each year, about 60 percent — around 522,000 — would need professional pain medicine, human attention and palliative care in their final weeks, months and years, while only about 79,000 dying people per year actually receive care in a palliative ward (28,000), a hospice (25,000) or through an outpatient service (26,000). It has therefore demanded an action plan for palliative care and mobile palliative medical and nursing teams deployed where people actually die. The foundation rejects a right to active euthanasia and demands that it remain punishable in Germany. During the COVID-19 pandemic it publicly warned of a hidden triage of COVID-19 patients in nursing homes.

• 2021

  Board member Eugen Brysch publicly warned of hidden COVID-19 triage in nursing homes in the television programme FAKT.

• 2012

  Announced the new name Deutsche Stiftung Patientenschutz in September 2012.

• 2009

  Renamed Patientenschutzorganisation Deutsche Hospiz Stiftung to emphasise its role as a spokesperson for severely ill people rather than an umbrella body for hospice institutions.

• 1995

  Founded as Deutsche Hospiz Stiftung by the Malteserorden Deutschland Werke e.V., which provided initial seed funding.

Independent, donation-funded advocacy organisation for severely ill, care-dependent and dying people; explicitly not a self-help group and not funded by the state, insurers, churches or service providers.

• Patientenschutztelefon

  Nationwide free telephone counselling for those affected and their relatives on advance directives, serious illness and care, including direct intervention in conflict cases. Staffed by experts in care, law and pastoral work.

• Schiedsstelle Patientenverfügung

  Arbitration service for doctors and relatives or legal representatives in disputes over the interpretation of advance directives; cases are reviewed within two working days according to the foundation.

• Insurance and benefits advice

  Help for severely ill and care-dependent people and their relatives with health and long-term care insurance issues, benefit claims, hospice funding, care levels, aids and specialised outpatient palliative care.

• Psychosocial support

  An open ear for callers in difficult illness and care situations.

1. 1Patientenschutz – Experten für Sie im Einsatz - Deutsche Stiftung Patientenschutzstiftung-patientenschutz.de
2. 2German Patient Protection Foundation - Wikidatawikidata.org
3. 3Deutsche Stiftung Patientenschutz - Wikipediade.wikipedia.org