Dealing with death and the process of dying is slowly being rethought in German society through hospice work. Many people find it difficult to come to terms with saying goodbye to life; the thought of the end is pushed far away. This is because the subject of “dying” is fraught with anxiety and fear, and the idea of dying in a hospital bed surrounded by apparatus and tubes is horrible for most people.
A common wish: to die at home
Many people would like to die at home, in their familiar surroundings. This wish is now taken into account with outpatient hospice work, although only for about 5 percent of the approximately 200,000 terminally ill patients. If it is no longer possible to provide care and end-of-life support in the patient’s own home, inpatient hospices are an alternative. Here, the dying are cared for and accompanied on their final journey.
The history of hospices
The beginnings in themselves are old and can be dated back to the beginning of Christianity in the Roman Empire. Travelers, the sick, the needy and the dying were taken in and cared for. In the Middle Ages, this task passed to Christian orders, which also founded their own hospices. In the 19th century, the idea was taken up again, especially in France and England. In the Federal Republic, on the other hand, the hospice movement is still very young. It was not until 1986 that the first hospice in Germany officially began its work. The development of inpatient hospices was accompanied by the establishment of so-called palliative wards in hospitals nationwide. Patients with advanced, incurable diseases are cared for in these wards. There are now about 300 palliative care units nationwide. In addition to pain therapy, the focus is on maintaining the maximum possible quality of life. The first chair for palliative medicine was established in 1999 at Bonn University Hospital: Since then, this medical specialty has also been established as a field of research.
What is hospice work, anyway?
The focus of hospice work is on dying people and their relatives with all their needs, wishes and rights. Hospice work – whether outpatient or inpatient – is based on the following main points:
- The spiritual accompaniment, which benefits both the dying person and his relatives and helps to understand the experience of death.
- The psychosocial accompaniment with the emotional support of those involved. Often, in the face of approaching death, unresolved conflicts are still outstanding – to resolve these conflicts or to accept that they can no longer be dealt with, costs a lot of emotional strength.
- Palliative care as well as palliative medicine treat pain and accompanying symptoms of the disease of the dying and strive to improve the quality of life at the threshold of death.
In Germany, there are now 1,500 outpatient hospice services and 235 inpatient hospices.
Who bears the costs?
Funding for outpatient and inpatient hospice work has only been established since 2002 by the health insurance funds and long-term care insurance. Initially, however, only the outpatient hospice service was free of charge for the patient. Since 2009, patients in inpatient hospice have also been exempt from all costs. Approximately 90 percent of the costs of a stay are covered by health insurance and long-term care insurance, while the hospice pays for the rest. Therefore, the hospices remain dependent on donations and subsidies.
End-of-life care at home
Caring for terminally ill people at home is not an easy task for family members. In addition to the emotional burdens, there are physical efforts and the complete change of the previously accustomed daily routine. With some preparations and the support of an outpatient hospice service, this task can be managed more easily:
- Anyone caring for a dying person at home does not need a special room for this purpose. A familiar room or a room with a cozy atmosphere are sufficient for this.
- Helpful is a suitable nursing bed, which may be borrowed from the health insurance. There should also be asked for a so-called decubitus mattress that prevents bedsores.
- Dressing, care and consumables should be easily accessible and available as well as pillows for storage and suitable blankets.
- The installation of a washing facility or else a wheelchair must be adapted to the spatial conditions.
Anyone who cares for relatives or friends at home takes on a great responsibility – ultimately for themselves. The own emotional and physical condition must be taken seriously to meet this task. In many cases, friends and acquaintances withdraw, and the social isolation – also caused by the time and spatial connection to the dying person – can become very great. It helps to organize visits beforehand, to think about the purchase and the supply of everyday life and also to find a contact person and companion for oneself.
Preparation for the difficult time
If a dying person is discharged from the hospital, contact should be made beforehand with the hospital social service and the family doctor. In a joint conversation, all upcoming tasks should be discussed and especially pain therapy should be clarified. The family doctor must understand and accept that the dying person does not want any life-prolonging measures. The social services of the hospital, the welfare institutions of the churches and the health insurance companies help in finding an outpatient hospice service. The employees of the outpatient hospice services usually work on a voluntary basis and have been prepared for their tasks through special courses. Their focus is primarily on the emotional well-being of the dying person and the people around them. They carry fears with them through closeness and empathy and accompany the mourning and loss process.
Inpatient hospices
Inpatient hospices are small, family-based facilities that provide palliative care for the dying. This means skilled nursing care is provided around the clock, supported by volunteers. The hospice is integrated with on-site medical care. Medical care is usually provided by the family doctor. Social workers, psychologists and geriatric nurses care for the dying and their families.
The children’s hospice
Children’s hospices are a special institution. Here, not only the young patients are cared for, but also their parents and siblings. The amount of care required here is particularly great: there must be space and living quarters for the families, and emotional and psychosocial care for the entire family must be provided, as well as palliative care for the young patient. Leisure activities and school commitments of the accompanying siblings must be taken into account. But despite all the grief, play, fun and laughter should not be neglected either. Children’s hospice work is so-called “respite care”, short-term care as a “vacation” for child and parents. In some children’s hospices, stays several times a year are also possible. For example, in the Balthasar children’s hospice in Olpe: It is the first children’s hospice in Germany that also allows four-week stays several times a year under the guideline “A second home for the whole family”. There are currently a total of 14 inpatient children’s hospices and more than 100 outpatient children’s hospice services in Germany.
