German Foundation for Patient Protection

from Wikipedia, the free encyclopedia
German Foundation for Patient Protection
Patient protection logo
Legal form: Foundation under civil law
Purpose: The foundation serves social purposes in the area of ​​caring for the elderly, seriously ill, in need of care and dying. It takes a stand for their self-determination as well as for protection against arbitrariness and inhumanity. The purpose of the foundation is also to oppose the liberalization of euthanasia
Chair: Harald Schliemann , Chairman of the Board of Trustees
Managing directors: Eugen Brysch, board member
Consist: 1995
Founder: Order of Malta
Seat: Dortmund
Website: stiftung-patientenschutz.de

The German Foundation for Patient Protection (formerly the German Hospice Foundation patient protection organization) is an organization representing the interests of seriously ill, care-dependent and dying people. It influences politics, health insurance companies and service providers in order to improve the health system in the interests of those in need of care and the dying.

history

The foundation was established in 1995 by the Order of Malta , which provided start-up funding. Today the foundation is financed exclusively from interest on its assets, donations and contributions from more than 55,000 members and sponsors. It waives money from service providers and health insurers, the churches or the public sector. In doing so, she says she wants to maintain her independence.

In 2009 it was renamed the German Hospice Foundation patient protection organization . This was to underline that the foundation does not see itself as an umbrella organization or interest group for hospice institutions, but as a spokesperson for seriously ill people.

In September 2012 the organization announced that it would in future be called the German Foundation for Patient Protection. The foundation bodies are a sole director and a nine-member foundation board chaired by Harald Schliemann . According to the published statutes, the clientele is still restricted to severe cases.

Self-image

The foundation sees hospice "not just as a specific place, but above all as a synonym for self-determination and care at the end of life". It is not a patient self-help organization. In a self-portrayal, the foundation writes that since the seriously ill, those in need of care and the dying cannot organize themselves, they stand by their side as an “expert advisor, experienced advocate and strong lobby”. The chairman of the board of trustees, Harald Schliemann, says it is about giving these people a voice and representing their concerns to service providers and payers.

Around 870,000 people die in Germany every year. According to the foundation, around 60 percent of them, i.e. around 522,000 people, would need professional pain medicine, human attention and palliative care in their final weeks, months and years . In fact, only a total of 79,000 dying people per year are cared for in a palliative care unit (28,000), in the hospice (25,000) or by an outpatient service (26,000). 443,000 deaths annually were left without palliative help.

Because of this, the foundation calls not only to rely on more hospices and palliative wards, but to bring about a fundamental change in the health care of those affected . The foundation is calling for a palliative care action plan to ensure that half of the dying will actually receive the help they need by 2020. There is an urgent need for "mobile palliative medical and nursing teams that are deployed where people actually die - in nursing homes, hospitals and at home". In addition, the offers of the existing health care facilities must be tailored to the special needs of those affected.

activities

According to its statutes, the foundation serves "social purposes in the field of caring for the elderly, the seriously ill, those in need of severe care and the dying". According to the statutes, this purpose of the foundation is to be realized through various activities, such as the patient protection hotline, by representing the members of the foundation's friends' association and through public relations and educational work.

Patient protection telephone

On the nationwide patient protection hotline, those affected and their relatives receive free advice on questions about prevention, serious illness or care. The topics range from advice on living wills to direct intervention in cases of conflict. According to the foundation, experts from the fields of care, law and pastoral care with years of experience in patient protection work there.

Arbitration Board Living Will

Both doctors and relatives can turn to the Advance Will Arbitration Board if there are any conflicts over the interpretation of an advance directive. In the event of a dispute, employees of the foundation, according to their own statements, check each living will within two working days. In this way, threatening legal disputes are to be avoided if the attending physician and the supervisor or authorized representative disagree about the interpretation of an order.

Service insurance issues

Seriously ill people and people in need of care and their relatives often have problems with their health and long-term care insurance. It is also about benefit entitlements, for example payment for a hospice stay, the level of care or the approval of an aid. The foundation also offers help here, as well as with clarifying the legal entitlement to specialized outpatient palliative care , in which legally and privately insured patients are covered differently. However, it is not the job of the self-proclaimed patient advocate to recommend certain health insurance companies or supplementary insurance.

successes

In 2007 the legislator established a legal right to specialized outpatient palliative care for every insured person. For this purpose, suggestions from a draft for a palliative services law of the German Hospice Foundation were taken up.

On June 18, 2009, the Bundestag passed a living will law. The foundation had already presented its own draft law four years earlier. Even if not all of the substantive requirements have been met, the foundation is at least satisfied that the law has at least drawn up guard rails that those affected, relatives, doctors and guardianship judges can use for orientation. In particular, the proposals for the content of an advance directive were implemented by law.

The Federal Office of Justice granted the right of collective action by 15 May 2013, the Foundation.

criticism

In May 2014, the magazine Der Spiegel published massive criticism of the foundation in the article Ground troop of the industry . In 2013 the pharmaceutical company Grünenthal sponsored the foundation with 40,000 euros. The former long-time managing director of Grünenthal, Michael Wirtz, with 13.5% the largest shareholder in the pharmaceutical company, is a member of the foundation board. In addition to the patron Uschi Glas, the foundation's committees also include entrepreneurs and former politicians. Until May 2016, Eugen Münch , Chairman of the Supervisory Board of Rhön-Klinikum AG , was the Deputy Chairman of the Board of Trustees. Der Spiegel asked: “Do the co-owners of a pharmaceutical company and the co-owners of a chain of clinics only focus on the interests of sick people?” On the other hand, there is not a single patient representative or relatives of affected patients on the foundation's committees.

The foundation rejects the criticism on its website and emphasizes that Grünenthal GmbH never exerted any influence on its work. The company's donation in 2013 corresponds to 1.6 percent of their total income. Grünenthal has also supported other organizations with donations for years, for example the Hospice Foundation Region Aachen, the Bundesverband Kinderhospiz eV or the German Palliative Foundation . However, the foundation is taking the criticism as an opportunity to forego donations from Grünenthal GmbH from 2014. In addition, there are no other companies that have made large donations to the organization.

In February 2014, the foundation applied to the Federal Ministry of Health to be recognized as the fifth association for patient representation in the Federal Joint Committee , which has to make legally binding decisions in many areas on the benefit entitlement of people with statutory health insurance. In March 2014, the BMG issued a refusal to recognize the foundation as the relevant patient representative. According to the BMG, relevant patient representative associations must promote the interests of patients in accordance with their statutes, not just temporarily. According to the BMG, this is "not the case with the applicant". This claim was refuted in a lawsuit: In April 2014, the foundation sued the BMG before the Düsseldorf Social Court . Even if the foundation is denied a seat on the Federal Joint Committee for structural reasons ("lack of membership"), the Düsseldorf Social Court found in its judgment of June 2018 that the German Foundation for Patient Protection promotes and not only temporarily the interests of patients offers a guarantee for the proper performance of tasks. All those involved also agree that the foundation “by disclosing its funding (can) prove that it (works) neutrally and independently”.

Awards

  • Arnold Janssen Prize (May 2008)
  • Springer Charity Award (October 2009)

Web links

Individual evidence

  1. ↑ a b German Foundation for Patient Protection Excerpt from the statutes of December 20, 2012 (PDF, 38kB)
  2. ↑ A lobby for the dying and the seriously ill. In: Ärztezeitung. August 28, 2009.
  3. ↑ German Hospice Foundation criticizes compromise on organ donation law. In: The West. November 24, 2011.
  4. ↑ a b c "How does the German Foundation for Patient Protection finance its work?" In: "Patient Protection Info Service 03/2014" from September 12, 2014
  5. ↑ stiftung-patientenschutz.de The patient protection organization German Hospice Foundation becomes the German Foundation for Patient Protection
  6. ↑ Organization chart of the Patient Protection Foundation , November 2018, accessed on December 3, 2018
  7. ↑ German Hospice Foundation renames itself to the patient protection organization German Hospice Foundation. Press release 45-09 of the patient protection organization Deutsche Hospiz Stiftung, December 15, 2009.
  8. ↑ Christoph Arens: mouthpiece for the seriously ill - the Hospice Foundation no longer wants to be a Hospice Foundation. In: Domradio . September 20, 2012, accessed September 21, 2014 .
  9. ^ A b Eva Quadbeck: Life expectancy is increasing in the special center: Cancer patients need better therapy. In: RP Online . September 6, 2013, accessed January 1, 2014 .
  10. ↑ German Hospice Foundation patient protection organization draws up an action plan. In: Tageblatt. February 9, 2012.
  11. ↑ bild.de 27,000 inquiries on the patient protection telephone, bild.de, 2012.
  12. ↑ stiftung-patientenschutz.de patient protection telephone : official website
  13. ↑ handelsblatt.com Health insurance company is pushing out expensive customers. October 30, 2012.
  14. ↑ dgpalliativmedizin.de Impending supply shortfall at the expense of privately insured persons . German Palliative Foundation, June 6, 2013.
  15. ↑ Since September 1, 2009, the new law on the regulation of living wills passed by the German Bundestag on June 19, 2009 (3rd law amending care law) has been in effect. on: palliativ-portal.de
  16. ↑ Law to improve palliative and hospice services (Palliativleistungsgesetz - PallLG) - draft law with justification.  ( Page no longer available , search in web archives )  Info: The link was automatically marked as defective. Please check the link according to the instructions and then remove this notice. (PDF; 291 kB) at: diakonie-wissen.de , accessed June 14, 2017.@1@ 2Template: Dead link / fachinformationen.diakonie-wissen.de  
  17. ↑ Law to ensure the autonomy and integrity of patients at the end of life - draft law with justification. (PDF; 253 kB) on: hospize.de , June 16, 2005.
  18. ↑ Press release from the foundation and certificate from the Federal Office of Justice on the right of group actions dated May 6, 2013 (as PDF)
  19. ↑ German Foundation for Patient Protection: "Organigram of the Foundation" ( Memento from November 6, 2016 in the Internet Archive ), viewed on November 6, 2016 (as PDF)
  20. ^ "Hospice Foundation Region Aachen" official website, as of September 21, 2014
  21. ↑ Markus Grill : Ground Troop of Industry . In: Der Spiegel. 22/2014, pp. 68-69. Advance notification: More pharmaceutical donations for self-help groups with expensive drugs.
  22. ↑ Arno Fricke: GBA admission - patient advocates sue Germany. On: aerztezeitung.de , April 29, 2014.
  23. ↑ Düsseldorf Social Court : Judgment of June 12 , 2018 - Az .: S 11 KR 331/14 on: www.stiftung-patientenschutz.de , October 25, 2018.
  24. ↑ Georg Kaster (Ed.): To die - at or through the hand of man? Documentation of the 3rd International Gocher Talks. dialogverlag, Münster 2009, ISBN 978-3-937961-99-6 , p. 226.
  25. ↑ Galenus Prize and Charity Award presented. on: aerztezeitung.de , October 19, 2009.