Terminal care

from Wikipedia, the free encyclopedia

In the life care , also known as death assistance , it comes to people in the last weeks before her death stand by to comfort her and care for considerate. People of all ages - this applies to children as well as old people, their families and those close to them - need attention and support in the last phase of life. End-of-life care grows out of social interaction and can be provided professionally by doctors, nurses, psychologists, social pedagogues, pastors, physiotherapists, music and art therapists and voluntarily by hospice attendants, but above all by relatives and friends.

The uncertainties in this area have increased due to the fact that hardly anyone experiences death in their environment anymore . For this reason, initiatives have been set up in many places that take care of terminal care in an organized manner. Some of these outpatient hospice services are now offering training courses on the subject of dying and grief in order to counter these uncertainties.

Basic attitude

The principles of terminal care were formulated by the hospice movement . According to this, end-of-life care sees itself primarily as help in life and thus distinguishes itself from euthanasia . An expansion of the hospice palliative services for the care of the terminally ill and dying would silence the call for organized euthanasia.

The German Hospice and Palliative Association e. V. formulates the basic attitude “to understand life in its entirety and dying as a part of life and to enable a life - and thus also dying - in dignity. This includes the greatest possible autonomy to the last, freedom from pain and at the same time security in familiar surroundings and in the circle of family and friends, professional palliative medical and nursing care as well as reliable psychosocial and spiritual support. "

End-of-life care is less a question of empathy and more the ability to communicate honestly, sometimes even more cautiously. The shyness and the resistance to face the terminally ill honestly and to get involved in their fate, as well as false expectations of the terminally ill, hinder a real accompaniment. An ideal role change promotes a sense of appropriate communication and the real needs of the terminally ill.

Basic knowledge

The accompaniment of the terminally ill and dying is often very different from what some idealized descriptions of dying suggest. In any case, the companions and the dying confront each other.

The basic knowledge includes reflecting on the specific needs and the reality of life of all those affected, as well as taking into account the fact that the life threat is usually known to the life-threatening sick person. It must be recognized that the threat to life is difficult to manage for all concerned. On the one hand, old, sick and dying people resist taking on the role of old, sick or dying people; on the other hand, they are focused on the degradation of their skills and go into social retreat.

Correspondingly, the relationship between life-threatening ill patients and their companions is ambivalent: companions are welcome as helpers, but at the same time they are rejected because they reveal the need for help. Elementary needs dominate the terminally ill and occupy their attention, their interests and their valences. Dying and aging people are always also grieving people; their grief is usually different from ("psychiatric") depression. The balance between fear and hope is very unstable; the language of the dying is peculiar, creative and profound. Old problems persist, new problems arise, character traits are reinforced.

Communication with the terminally ill and dying

The international specialist literature shows a variety of ways and different methods of accompanying the terminally ill and dying as well as their relatives. Basic rules for communicating with the terminally ill and dying are named, but also rules and models for special situations (e.g. informational discussions) and for the various actors (e.g. doctors) are shown. A distinction is made between different occasions and situations in which meetings and discussions with patients take place. The respective situation and all those involved influence communication. The task of the dying companion is to organize the conversation and the accompaniment.

There are different views on how communication should be designed; what may and may not be said. Some authors give detailed and concretely formulated rules for communication and evaluate whether behavior is correct and whether questions or statements are good. Then there are good, unsuitable, and forbidden questions. For example, a patient's question about their remaining life should not be answered with a precise time. For example, according to Stein Husebø , a doctor should say: "There is an endless amount of things we can do for you and your family." He shouldn't say: "Unfortunately, you have to live with your pain."

Other authors give neither standard sentences nor binding guidelines or rules. They present the basics of communication, give application aids and recommendations for communication. These relate to education and information about diagnosis, prognosis and disease-associated problems as well as an appropriate handling of the patient's emotional situation.
For these authors, communication with the terminally ill is too complex to be able to generally determine what is right or wrong. They cannot be mastered with formulated guidelines. If communication is to succeed, the conditions of the respective situation, the realities of life and the various character traits of all those involved as well as the complexity of communication in general have to be taken into account. However, good intentions alone are not enough. The terminally ill depend on companions to adjust to them and turn to them, but also take their own situation and personal well-being into account.

Companions organize and structure a responsible conversation in its structure and process: This includes perceiving what really moves this terminally ill patient, the reality of his life, his specific needs and losses; listen instead of persuading, patronizing or pressuring him. A terminally ill person is to be taken seriously and respected as someone who wants to continue to act independently. At the same time, space should be given to complain and cry, but also to hope and laugh. According to Ernst Engelke , healthy people can be helpful for the terminally ill if they are willing and able to expose themselves to the incomprehensible and let the terminally ill touch them at a time when they do not have to die themselves.

Requirements and training for dying attendants

Of-life care both to relatives and friends of the dying person, as well as doctors, nurses, chaplains and volunteers involved helpers. No special training is required. In the meantime, however, corresponding courses are offered in many places, as interest in the topic has grown; In addition, hospice services usually expect their volunteers to provide evidence of participation in a hospice assistant course that meets certain quality requirements. On the one hand, this is a consequence of the institutionalization of the hospice movement and palliative care ; on the other hand, the care of the dying often represents a high psychological and emotional burden for all involved, so that appropriate preparation seems sensible.

The topics of dying, death and mourning are often suppressed in everyday life. However, when accompanying a dying person and during the subsequent grief counseling , dealing with this topic cannot be avoided. Voluntary dying attendants who want to get involved in hospice work are expected to be willing to reflect, among other things, "to develop their own hospice attitude, which results in the mindful and respectful encounter with the dying person and those close to him." ( D. Blümke et al .: Quality requirements for the preparation of volunteers in hospice work. Ed .: Bundesarbeitsgemeinschaft Hospiz 2005) In addition, the volunteer should be aware that the needs of the dying person and their relatives are in the foreground and their own ideas are secondary.

Training in this area is offered by church or social associations, including Caritas , Arbeiterwohlfahrt (AWO), Malteser Hilfsdienst , Diakonie and Johanniter-Unfall-Hilfe . The training includes, among other things, theoretical basics about physical changes in the dying process and the psychological adjustment processes as well as practical exercises, for example in conversation and behavior in critical situations, as well as reflections on one's own experiences of grief and the motivation to volunteer as a companion for the dying. The trained attendants are then offered regular supervision by the coordinating hospice service.

Pastoral care in the dying can even with unchurched be displayed and non-religious people, because even them it is during their dying process often a concern about faith , religion, the meaning of life to exchange and related questions and ponder. It is important for the companion to respect the worldview or religious conviction of the dying person.

Ethical questions in the medical treatment of the dying have been discussed more frequently in medical literature since the 17th century. According to the principles of the German Medical Association, terminal care is expressly one of the tasks of the doctor. End-of- life medical care often begins with the communication of the diagnosis of a fatal illness in an educational discussion between doctor and patient and ends with the death of the patient. The focus is on the will of the patient or his / her expression of will in the form of an advance directive.

Outpatient hospice services

In many places, outpatient hospice services (in Austria: mobile hospice teams) have developed from purely donation-financed citizens' initiatives and church-integrated hospice groups, from which in- patient hospices also emerged . The institutions are supported by private associations, church aid organizations and charities, some of which have specialized in certain target groups, such as children's hospice services. In the meantime (as of 2014) the mostly voluntary helpers look after around 30,000 people a year. The helpers are often deployed in the home environment of the person concerned, but also in the inpatient hospice, nursing home or hospital. He is prepared and advised by full-time coordinators. Some hospice services also offer grief counseling , some of which is professionally supported by psychologists and pastors.

financing

Due to the legally anchored legal entitlement to hospice-palliative care in § 39a of the fifth book of the Social Security Code (SGB V), funding amounts were set by the legislator in 2009. The funds are paid out to the hospice services by the statutory health insurance under certain conditions . The reference value according to § 18 SGB ​​IV is decisive for the calculation of the funding . Among other things, the prerequisite for funding is that the service has been in existence for at least one year, has a certain number of helpers and is able to cooperate with at least one palliative- oriented doctor and nursing service ready.
In 2013, 827 outpatient voluntary hospice services were funded with 44.9 million euros in Germany. However, not all costs are covered by the funding, which makes it necessary to constantly raise funds and the associated public relations work. Some services do not apply for funding from the health insurance companies because they either do not (yet) meet the requirements or because they consciously want to forego it and the administrative effort required for it. Such services are financed exclusively through donations.

In the meantime, the Federal Ministry of the Interior has concluded negotiations on cost sharing with the Association of Private Health Insurance and the federal aid agencies.

With the Hospice and Palliative Care Act (HPG), which mostly came into force on December 8, 2015, both personnel and material costs are taken into account; The special expenses for the initial hospice interview and the bereavement support of the relatives should also be better reimbursed through the subsidies from the health insurance companies. Hospitals can commission outpatient hospice services to provide terminal care; Nursing homes must provide evidence of cooperation agreements with outpatient hospice services as well as with general practitioners and specialists.

See also

Ars moriendi

literature

  • H. Christof Müller-Busch: Farewell takes time. Palliative medicine and the ethics of dying. Suhrkamp Verlag, Berlin 2012, ISBN 978-3-518-46368-0 .
  • Ernst Engelke : Against the loneliness of the terminally ill. How communication can succeed. Lambertus-Verlag, Freiburg i.Br. 2012, ISBN 978-3-7841-2111-6 .
  • Ernst Engelke, Hans-Joachim Schmoll, Georg Wolff: death support for children and adults. Enke, Stuttgart 1979.
  • Uwe Koch, Klaus Lang, Anja Mehnert, Christoph / Schmeling-Kludas (eds.): The accompaniment of seriously ill and dying people. Schattauer Verlag, Stuttgart 2006, ISBN 3-7945-2421-7 .
  • Mechthild Ritter: When a child dies. Help and orientation for parents, siblings and companions. Kreuz, Stuttgart 2003; also: Gütersloher publishing house. Gütersloh, ISBN 978-3-579-06842-8 .
  • Bernhard Bayer, Thorsten Hillmann, Georg Hug, Christa Ruf-Werner (Ed.): Child and youth hospice work. The Celle model for preparing volunteers in terminal care. Gütersloher Verlagshaus, Gütersloh 2009. ISBN 978-3-579-05897-9 .
  • Federal Working Group Hospice e. V. (Ed.): Outpatient hospice work. Basic texts and research results on hospice and palliative work, part 1. The Hospiz Verlag, Wuppertal 2004, ISBN 3-9808351-9-7 .
  • Barbara Dobrick : About Loving and Dying. Conflicts, needs and hopes of relatives. Kreuz, Freiburg im Breisgau 2010, ISBN 978-3-7831-3497-1 .
  • Peter Godzik (Ed.): The art of terminal care. Handbook for accompanying the seriously ill and dying. Steinmann, Rosengarten b. Hamburg 2013. ISBN 978-3-927043-48-0 .
  • Joachim Wittkowski (Ed.): Die, Tod und Mrauer. Basics, methods, fields of application. Kohlhammer, Stuttgart 2002.
  • Karen Nolte: terminally ill. Terminal care in the 19th century: medicine, nursing and religion. Göttingen 2016. ISBN 978-3-8353-1852-6 .
  • Johannes Roth: "I don't even know how to die". Diary of a terminal care worker. Gütersloher Verlagshaus, Gütersloh 2000, ISBN 3-579-00926-5 .

Movies

Web links

supporting documents

  1. ↑ German Society for Palliative Medicine e. V., German Hospice and Palliative Association e. V., German Medical Association (Hrsg.): Charter for the care of seriously ill and dying people in Germany . Berlin 2010.
  2. ↑ G. Fasselt: Death support / terminal care from an ethical point of view. In: Peter Hucklenbroich (ed.): Death and dying: medical perspectives. LIT Verlag, Münster 2001, pp. 105-106.
  3. ↑ Dirk Müller, Bettina Wistuba: The situation of hospice work and palliative care in Germany. Facts, ratings, need for improvement. Ed .: Konrad-Adenauer-Stiftung eV, St. Augustin / Berlin 2014, p. 41
  4. ^ German Hospice and Palliative Association e. V .: In the end, people count. Retrieved August 8, 2016 .
  5. ↑ Ernst Engelke: Every encounter is a confrontation. What Doctors Nurses and Relatives Need to Know Before Speaking to the Dying . In: Praxis Palliative Care . No. 24 , 2014, p. 36 f .
  6. ↑ C. Bausewein, S. Roller, R. Voltz (Ed.): Guideline Palliative Care. Urban & Fischer, Munich 2015, p. 27 f., 34 .
  7. ↑ S. Husebø, E.Klaschik: palliative care . Springer Verlag, Berlin 2003, p. 150 f .
  8. ↑ U. Koch, K. Lang, A. Mehnert, C. Schmeling-Kludas: The accompaniment of seriously ill and dying people. Schattauer Verlag, Stuttgart 2006.
  9. ↑ E. Engelke: Against the loneliness of the terminally ill. How communication can succeed. Lambertus Verlag, Freiburg i.Br. 2012, p. 209-356 .
  10. ↑ E. Engelke: The truth about dying. How we better deal with it. Rowohlt Taschenbuch Verlag, Reinbek near Hamburg 2015.
  11. ↑ D. Blümke et al .: Quality requirements for the preparation of volunteers in hospice work. Ed .: Federal Working Group Hospice 2005
  12. ↑ 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 , p. 9 f. and 57-67.
  13. ↑ Principles of the German Medical Association for medical terminal care. Berlin 2011, preamble , accessed on May 19, 2015
  14. ^ Müller and Wistuba: The situation of hospice work and palliative care in Germany. Facts, ratings, need for improvement. Ed .: Konrad-Adenauer-Stiftung eV, St. Augustin / Berlin 2014, pp. 20–21
  15. ↑ Framework agreement on the requirements for funding as well as on the content, quality and scope of outpatient hospice work from September 3, 2003, as amended from April 14, 2010. , accessed on May 21, 2015
  16. ↑ Müller and Wistuba 2014, p. 21
  17. ↑ Participation of the private health insurance as well as the federal aid agencies in the financing of the outpatient hospice work. DHPV Aktuell from February 27, 2015 , accessed on May 21, 2015
  18. ^ Text, amendments and reasons for the Hospice and Palliative Care Act - HPG
  19. ↑ Federal Ministry of Health: Bundestag passes a law to improve hospice and palliative care. , accessed November 25, 2015