Palliative care

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Palliative Care (English; from Latin cura palliativa, from palliare “to cover with a coat”; English care “welfare, care, care, attention”), in Germany sometimes used synonymously with palliative care , is an internationally recognized comprehensive concept for advice and support and care for seriously ill people of all ages with an incurable underlying disease .

According to the founder of the modern hospice movement, Cicely Saunders , palliative care is associated with a certain attitude that can be understood as an orientation within and between organizations. Palliative care is also, but not exclusively, understood as an alternative to treatment geared towards healing and expressly refers not only to patients who are already in the last stage of a fatal disease.
Palliative Care is also involved in teaching and research in this area. This resulted in further scientific disciplines, such as spiritual care , as well as precautionary concepts such as “Advance Care Planning” (ACP) , “End-of-Life-Care” (EoLC) for the last phase of life and grief counseling for relatives .

The resulting practical palliative care (or palliative care ) is a form of care work that is offered by several health care facilities and implemented in interdisciplinary cooperation between various professional groups and also voluntary helpers. The main pillars here are, among others, palliative medicine , palliative care and hospice work (in the sense of psychosocial support).

If palliative specialists and experienced helpers are called in at an early stage, emergencies, crises and ultimately the dying process can be better managed and undesired or unnecessary hospital stays can be avoided. It has also been shown that early palliative treatment can extend the remaining life span, and that with an improved quality of life.

Many countries have therefore developed their own concepts with verifiable criteria for palliative care. These relate to all areas of psychosocial support and medical and nursing care that directly affect the seriously ill or dying person and their relatives. The focus is on symptom control to alleviate individually perceived complaints and support with psychological, social and spiritual needs. The goal is to achieve the best possible quality of life for the affected patient and their family.

concept

The concept of palliative care is based on a centuries-old principle: "Sometimes healing, often relieving, always comforting." In an increasingly technology-oriented medicine, a return to the needs of seriously ill people began in the last third of the 20th century, beyond purely physical care go out. Palliative care takes into account the current physical, mental, social and spiritual situation and the resulting needs of seriously and terminally ill people and their environment: relatives are included as close companions of the seriously ill and, like the patient, receive support and care. In addition, they can help to fathom the presumed will of the patient if he can no longer speak for himself and there are no corresponding orders . This is important insofar as the patient's needs, wishes and wills are the basis for all treatment and care measures.

Various professional groups, not only active in the health sector, implement palliative care in close networking and with regard to the wishes and wishes of the patient: In addition to voluntary helpers, medical and nursing staff, dieticians and dietitians, music, art, breathing and Occupational therapists, speech therapists, physiotherapists, psychologists, pastors, social workers and social pedagogues. There are also relatives involved and volunteer hospice helpers. Palliative care is expressly not understood as a treatment and care option only for the last days of life, but rather as support for those affected at an early stage; ideally as soon as a fatal disease is diagnosed.

A basic attitude of palliative care is the acceptance of the finiteness of life. That is why the artificial delaying of dying is rejected, as is active euthanasia .

Basic principles of palliative care

In 1977 Cicely Saunders formulated the following basic principles for palliative care, in which the special hospice attitude is expressed (translation from English):

  1. The patient is treated in different environments (outpatient, inpatient, at home, nursing home, etc. ).
  2. Management is carried out by an experienced, professional, multidisciplinary team.
  3. General symptoms, especially pain, are controlled by specialists.
  4. Competent care by experienced care (specialist) staff
  5. The treatment team is led by a suitable team member.
  6. The needs of the patient and his family are considered as a whole.
  7. Volunteers are an integral part of the supplying team.
  8. The principle “high person, low technology” applies. That is, what is human comes to the fore, what is medically feasible with a lot of technical effort in the background. The aim of therapy is the patient's quality of life.
  9. The central administration is (always) available.
  10. Grief counseling
  11. Research, documentation and evaluation of the treatment results
  12. Teaching (teaching and training of doctors, nurses, social workers and pastors)
  13. Commitment and devotion (accompanying painful circumstances requires a certain degree of maturity, compassion and understanding)

Origin of the term

Palliative care has its origins in the hospice movement founded in the UK by Cicely Saunders in the 1960s . Saunders first spoke of Care of the Dying , later using the term Hospice Care . The Canadian doctor Balfour Mount (* 1939) found out about St Christopher's Hospice , which had been founded by Saunders, through the book On Death and Dying by Elisabeth Kübler-Ross . Prompted by an in-hospital investigation into the dying situation, which revealed shocking results, Mount sought ways to improve the inadequate treatment of this group of patients. He made contact with Saunders and an intern in 1973 for a week in London's Hospice . Impressed by the work there, Mount set up a hospice-like department at the Royal Victoria Hospital Québec, initially as part of a pilot project . Due to the successful work of this department, it became an official part of the hospital from 1976.

Mount originally intended to call this first palliative facility within an acute hospital hospice . Since the term was already occupied by the meaning of nursing home in French , Mount created the name palliative care (French: soins palliatifs ). As a result, Cicely Saunders and other experts and organizations working in this field adopted the term. Palliative Care should make it clear that hospice support and care is not only offered within a special facility and not exclusively for the dying in the last days and hours of their lives, but also wants to support people who have been affected by serious, incurable illnesses for months and years are.

In 1985 the Royal College of Physicians in the United Kingdom introduced the medical specialization Palliative Care Consultant , which on the one hand the medical profession recognized palliative care as a new discipline, on the other hand the medical establishment attempted to use this field as a medical treatment area in itself - and not as a holistic one Care concept - to complain.

Saunders describes palliative care as a philosophy that is not based on material possibilities, but on attitudes and skills.

For the term, which comes from English, there is no suitable translation in German that summarizes all facets of palliative care in one term. An analysis of the specialist literature published in 2008 revealed 37 English and 26 German definitions of the terms palliative care and palliative medicine. In addition, palliative care was incorrectly translated as palliative care in early publications. The relevant specialist groups have therefore adopted the internationally valid technical term as defined by the World Health Organization (WHO).

World Health Organization WHO definitions

In 1990 the WHO published a definition for the care concept:

Palliative care is ...

"... the active, holistic treatment of patients with a progressive, very advanced disease and a limited life expectancy at the time when the disease no longer responds to curative treatment and the control of pain, other disease symptoms, psychological the successful treatment of pain and other symptoms as well as help with psychological, social and spiritual problems has the highest priority. "

In 2002 this definition was replaced by a new version. Then there is palliative care

"... an approach to improving the quality of life of patients and their families who are confronted with problems associated with a life-threatening illness: through prevention and alleviation of suffering, through early detection, impeccable assessment and treatment of pain and other stressful physical ailments, psychosocial and spiritual. "

target group

Palliative care is primarily an offer to patients with an incurable, progressive and well-advanced disease. This includes not only tumor patients , but also people with neurological degenerative diseases such as amyotrophic lateral sclerosis (ALS), congenital or acquired physical defects such as cystic fibrosis , pulmonary fibrosis or irreversible head and brain trauma , as well as very old people who are often suffering from multiple, sometimes chronic, internal medicine Suffer from illness or dementia .
The decisive factor for the indication of palliative treatment is not the nearness of death, but whether the sick person suffers from stressful symptoms or has other need for support caused by the illness, which may also affect the patient's environment. In this respect, relatives are also included in the target group of palliative care, who often need psycho-social care just like the patient.
For example, if curative treatment of the underlying disease with medical measures such as chemotherapy and radiation therapy , which are often associated with significant side effects and restrictions, is no longer possible or not desired, quality of life now comes to the fore as the therapeutic goal. Such a change in therapy goal is agreed with the patient, but must also be communicated to his / her caregivers so that everyone involved can understand and support the decision.

In order to largely prevent future conflicts and to be able to react appropriately in emergency situations, family carers, especially in the domestic area, need comprehensive information, advice, guidance and human support in the form of relief conversations. These tasks are carried out by employees of outpatient palliative care teams or hospice services , who can be reached around the clock by arrangement and appear on site if necessary.
In the case of palliative patients who live in the nursing home, the nursing staff there is also supported in this way (if there is a corresponding indication ), for example to prevent unwanted hospitalization.

Effectiveness of early palliative care

Several studies of patients with metastatic non-small cell lung cancer, who were offered palliative care at the same time as standard oncological treatment at the time of initial diagnosis , showed a decrease in symptoms, an improvement in quality of life , greater patient satisfaction and less stress on caregivers. This led the American Society of Clinical Oncology (ASCO) to assume in 2012 that this result also applies to patients with other oncological diseases. She therefore decided on a preliminary clinical recommendation, according to which early involvement of palliative care leads to more effective care and reduces unnecessary or unsuccessful intensive treatments.
The German Society for Palliative Medicine (DGP) and the German Society for Hematology and Medical Oncology (DGHO) followed this recommendation in a joint statement in 2015.

Development of palliative care in different countries

Germany

When the hospice movement and, at the same time, palliative medicine began to form in Germany, the initiators initially oriented themselves towards English institutions that had already developed concepts for accompanying the last phase of life of seriously ill people.

In 1983, the first palliative care unit was set up at the University Clinic in Cologne with the support of the German Cancer Aid . A housekeeping service was attached to her. In 1986, Haus Hörn was the first inpatient hospice to be opened in Aachen. In 1992 the Federal Hospice Working Group (BAG Hospiz) was formed, which was renamed the German Hospice and Palliative Association (DHPV) in 2007 . With the founding of the German Society for Palliative Medicine (DGP) in 1994, the first medical specialist society came into being which, in the spirit of palliative care, also allows members of non-medical professional groups as members. In 2016, according to the German Hospice and Palliative Association eV, there were 304 palliative wards / units, 235 inpatient hospices and 1,500 outpatient facilities in Germany.

With the basic palliative care curriculum developed by the DGP, a summary of the priorities of palliative care was published in 1996. This includes creative and individual care, medicine and social work that takes care of the physical, mental, social and spiritual needs of the seriously ill and his environment and, if necessary, adequately supported with the help of outpatient and inpatient facilities. On this basis, the advanced training courses in the field of palliative care developed, which were tailored to the various professional groups. Master’s courses in palliative care have now been set up at various universities, including Bremen, Dresden and Freiburg.

In 2007 the legal basis for the financing of specialized outpatient palliative care (SAPV) came into force. As part of the SAPV, specially trained palliative care teams organize further comprehensive palliative medical and nursing treatment as well as psychosocial and pastoral support for seriously ill and dying people in the home. In some regions, care models of this kind had developed even before the introduction of the SAPV; for example, in Baden-Württemberg, a project was established under the heading of bridge care to improve the accompaniment of cancer patients from the hospital to outpatient care.

In November 2015, the law to improve hospice and palliative care (HPG) was passed in the German Bundestag. Palliative care is thus an express part of the standard care in statutory health insurance (GKV) and terminal care is an express part of the care insurance mandate . Insured persons have the right to individual advice from their health insurance company on the selection and use of palliative care services. In addition, palliative care provided within the context of home nursing should be billed to care services .

Austria

The first initiatives to deal with the dying differently were initiated at the end of the 1970s, due to demands from professional carers, who saw themselves faced with major problems due to the taboo on the subject. In 1987, an Austria section was formed within the International Society for Dying Care and Life Assistance (IGSL) founded in Germany a year earlier .
With the St. Raphael Hospice, the first inpatient palliative care facility was opened in Vienna-Hernals in 1992. In 2003 this hospice unit at the Göttlicher Heiland Hospital was converted into a palliative care unit.

Palliative medicine was first included in the Austrian Hospital and Large Equipment Plan (ÖKAP / GGP) in 1999 under the title Hospice . In 2001, the establishment and expansion of palliative care units in acute hospitals began. In 2004, together with the umbrella organization Hospiz Österreich and the Austrian Palliative Society , the Austrian Federal Institute for Healthcare developed “building blocks for graduated hospice and palliative care”. In the "Agreement in accordance with Article 15a of the Federal Constitutional Law on the organization and financing of the health system", the federal government and the federal states agreed on the introduction of graduated care in the palliative and hospice sectors. The concept has been part of the Austrian Health Structure Plan since 2010 . The concept pursues the goal of "caring for the right patients at the right time in the right place", which means that around 80 to 90 percent of all terminally ill patients only need basic palliative care. This should be able to be provided by all service providers and institutions in the health and social sector, which requires a corresponding qualification of the employees in palliative care. On the other hand, specialized hospice and palliative care should be reserved for 10 to 20 percent of all terminally ill patients who are in a more complicated situation. There are six different service offers that complement the basic care: Palliative consultation service , mobile palliative team (similar to the SAPV in Germany) and hospice team (corresponds to the outpatient hospice service ) as a supportive, palliative ward , day and inpatient hospice as care offers.

At the University of Klagenfurt , the International University Course Palliative Care was set up, with which the degree Master of Advanced Studies (MAS) / Palliative Care can be obtained.

Switzerland

The nurse and educationalist Rosette Poletti worked at the Ecole du Bon Secours in Geneva from 1970 onwards with palliative care. After Elisabeth Kübler-Ross's lecture tours in German-speaking Switzerland, various volunteer groups emerged during this time, including the Aargau Hospice and the Zurich Association for accompaniment Seriously ill people and groups of volunteers at the Baden Cantonal Hospital. In 1975 the criminal proceedings against senior physician Urs Haemmerli from the Triemli Hospital in Zurich sparked a public debate about euthanasia by failing to "artificially extend life". As a result, the Swiss Academy of Medical Sciences first drew up guidelines on euthanasia in November 2016, but soon the granting of active euthanasia was also required, whereupon the euthanasia organization Exit was founded in 1982 .

Around 1980 the geriatrician Charles Henri Rapin and the nurse Anne Marie Panosetti at the Center des Soins Continus in the canton of Geneva (now the Hôpital de Bellerive in Collonge) began to implement palliative medicine, care and support for the first time.

The specialist society palliative ch was founded in 1988, initially under the name of the Swiss Society for Palliative Medicine, Care and Support (SGPMP). With its ten regional societies, it has around 2000 members, including nurses, doctors, pastors and voluntary dying attendants.

In 2009, the Federal Office of Public Health and the Conference of Health Directors adopted a joint “National Palliative Care Strategy” for the years 2010–2012 to improve palliative care in view of the increasing number of seriously ill people in need of care in the last phase of life in the Swiss health and social system due to the changed age structure to anchor. Implementation began in January 2010 in the five sub-projects care, financing, awareness-raising, education and research, as well as an overarching sub-project to define the guidelines. Palliative care in Switzerland is based on a matrix structure with an outpatient area, a long-term or hospice area and an acute inpatient area.

On October 25, 2012, the “National Strategy” was extended by three years to 2015. In 2015, the umbrella organization Hospize Schweiz was founded in the Zurich Lighthouse Hospice , which, together with its members, developed a new definition and criteria for inpatient hospices. Accordingly, hospices should be designated as a social medical institution with a palliative care mandate .

Access to palliative care offers in Germany

The treating GP or specialist is usually the first point of contact; no special formalities are required for measures of general outpatient palliative care (AAPV). Affected patients as well as their relatives can also arrange a free and non-binding consultation with the appropriate offices of the welfare associations or directly with the various palliative care institutions. This includes the outpatient hospice service , inpatient hospices and palliative support centers. Most institutions also offer advice over the phone.

In the event of complications in the course of the disease, the treating family doctor or specialist can involve a palliative doctor or a palliative team in the treatment as part of the Specialized Outpatient Palliative Care (SAPV). If the problems at home cannot be treated or only inadequately treated, or if further special diagnostics or therapy is required, the doctor can, for example, refer the patient to a hospital that has a palliative care unit . If it is foreseeable that care for the sick person at home cannot be taken over or can no longer be adequately maintained, for example because the relatives feel overwhelmed, contact should be made in good time with an inpatient care facility or hospice, as these facilities cannot always offer a free place immediately . Palliative support by a SAPV team can also take place in the nursing home if the requirements are met.

With their own social services , all hospitals offer assistance in finding suitable offers and in dealing with the formalities required in individual cases, such as those required for admission to or in an inpatient hospice. In clinics that have a palliative medicine department, the palliative medical consultation service is called in if necessary .

European and international organizations

The European Association for Palliative Care (EAPC) brings together almost 50 umbrella organizations and specialist societies from 27 European countries.
In Germany these are the Bundesverband Kinderhospiz eV, the German Society for Palliative Medicine and the Deutsche Hospiz- und PalliativVerband eV, in Austria the umbrella organization Hospiz Österreich (DVHÖ) and the Austrian Palliative Society (OPG), in Switzerland Palliative ch (Société Suisse de Médecine) et de Soins Palliatifs). The aims include supporting training in the field of palliative care at all levels of the health system, representing interests in this regard, promoting research and evidence-based practice of palliative care and improving cooperation between providers, organizations, institutions and individuals. Among other things, the EAPC develops guidelines for various areas of palliative care, maintains a research network and a number of working groups that deal with specific topics, and organizes regular congresses.

In 2019, its vice-president, the head of the palliative medicine department of the Erlangen University Hospital, Christoph Ostgathe, was elected president of the EAPC.

The International Association for Hospice & Palliative Care (IAHPC) pursues the same goals as the EAPC worldwide. As a non-profit organization , it publishes the Manual of Palliative Care free of charge .

The first European research center, the European Palliative Care Research Center (PRC) at the Technical University of Norway and at St. Olavs Hospital (Trondheim University Hospital), has been coordinating European, North American and Australian researchers and research groups since 2009; inter alia with the aim of improving the treatment of symptoms, especially in the case of pain and cachexia .

See also

literature

  • Claudia Bausewein , Susanne Roller, Raymond Voltz (Eds.): Guide to Palliative Care. Palliative Medicine and Hospice Care. Elsevier Munich, 5th edition 2015, ISBN 978-3-437-23313-5 .
  • G. Bollig, M. Unger, P. Pani: Is there a difference between palliative care and palliative medicine? In: Journal of Palliative Medicine. 06/2010, pp. 304-313.
  • Andreas Heller and others (ed.): If there is nothing left to do, there is still a lot to do. How old people can die in dignity. Freiburg im Breisgau 2007.
  • Martina Kern, Monika Müller , Klaus Aurnhammer: Basic Curriculum Palliative Care. 2. revised. Edition. Pallia Med Verlag, Bonn 2007, ISBN 978-3-99315-408-0 .
  • Cornelia Knipping (Ed.): Textbook Palliative Care. Huber, Bern 2006; 2nd edition ibid 2007, ISBN 978-3-456-84460-2 .
  • Sabine Pleschberger: Palliative Care: A care concept for dying people. Series of publications by the Institute for Nursing Science at Bielefeld University (IPW), 2001, ISSN  1435-408X . On-line
  • Maria Wasner, Sabine Pankofer (Ed.): Social work in Palliative Care. Verlag W. Kohlhammer Stuttgart 2014, ISBN 978-3-17-023807-7

Web links

Individual evidence

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