Palliative care understands life in its entirety and dying as a part of life. It is therefore difficult to separate end-of-life care (“hospice care”) from palliative care nursing (“palliative care nursing”). Basically, hospice care is concerned with the last weeks to days of a person’s life and dying with dignity. Palliative care aims to enable the sick person to live in his or her familiar surroundings for a long time. This can be for several months or even years.
Tasks of palliative care
Palliative care is a holistic concept. It focuses on the sick person, but also on his or her environment and relatives. The following areas are taken into account:
- physical condition: health complaints (such as pain, shortness of breath, itching, nausea, vomiting, constipation, diarrhea, wounds), nutrition, oral care, proper positioning in bed
- psychosocial aspects: e.g. fear, anger, grief, depression in the patient, organization of daily life, contact with relatives/caregivers and their integration into palliative care
- mental and spiritual (“Spiritual Care”) issues: meaningfulness of life, life balance, spirituality, space for farewell and loss situations, pastoral support
Palliative care is comprehensive, as the example of the common symptom of shortness of breath shows: Adequate fresh air, loose clothing, supportive positioning, breathing exercises, massages, psychological care to control feelings of anxiety, avoidance of stress factors, an emergency plan in the event of attacks of breathlessness, oxygen administration, painkillers and other drug therapies are important components of care for affected patients.
Structure of palliative care
In Germany, palliative care is based on two pillars – general and specialized palliative care:
General palliative care (APV).
General palliative care (APV) is aimed at patients who are in a low or moderately complex situation (e.g., few pronounced symptoms, slow or moderate progression of the underlying disease, balanced psychological state).
inpatient: If care in the patient’s own home is not possible, general palliative care is implemented as an inpatient in a hospital or nursing facility – with possible support from outpatient hospice services. Some patients also spend their final time in an inpatient hospice.
In all settings (outpatient, inpatient), volunteers can help care for the dying.
Specialized palliative care (SPV).
Palliative patients in a highly complex situation (e.g., difficult-to-treat symptoms, pronounced anxiety, difficult and unsupportive family circumstances) are in need of more elaborate care than general palliative care can provide. This is when specialized palliative care (SPV) kicks in.
The palliative care team documents and coordinates a patient’s palliative care and advises his or her caregivers (primary care physician, outpatient nursing or hospice service, etc.). Close contact is also maintained with family members. The PCT is available around the clock (seven days a week/24 hours).
At the outpatient level of specialized palliative care, it is also possible to care for patients through a specialized palliative outpatient clinic or in a day hospice (care in the hospice during the day, return home in the evening).
Inpatient: Palliative care units are available in many hospitals for necessary inpatient care of critically ill, dying patients. Other care options include in-hospital palliative care services, palliative care day clinics and inpatient hospices.
Both outpatient and inpatient hospice services and volunteers can assist with specialized palliative care.
Information for voluntary and private caregivers
Most sick people would like to remain in their familiar surroundings. However, even though the supply of care is increasing, it is hardly possible to fulfill this wish for everyone affected. Hospice and palliative work is therefore in urgent need of volunteers and family caregivers.
Anyone who would like to volunteer in the demanding task of caring for the dying and their relatives can contact an appropriate facility in their area and inquire about the possibilities of helping out. Important information is also provided by the “Wegweiser Hospiz und Palliativmedizin Deutschland” (www.wegweiser-hospiz-palliativmedizin.de). Qualifying training to prepare for this activity and supervision are necessary in any case. Free information events help to gain an initial insight into the work.
Support for family caregivers
Information for voluntary and private caregivers
Most sick people would like to remain in their familiar surroundings. However, even though the supply of care is increasing, it is hardly possible to fulfill this wish for everyone affected. Hospice and palliative work is therefore in urgent need of volunteers and family caregivers.
Anyone who would like to volunteer in the demanding task of caring for the dying and their relatives can contact an appropriate facility in their area and inquire about the possibilities of helping out. Important information is also provided by the “Wegweiser Hospiz und Palliativmedizin Deutschland” (www.wegweiser-hospiz-palliativmedizin.de). Qualifying training to prepare for this activity and supervision are necessary in any case. Free information events help to gain an initial insight into the work.
Support for family caregivers
Even with good organization, home palliative care can reach its limits. If the need for care increases, the burden on the caregiver also rises sharply. It is not uncommon for a relative to then exceed his or her own limits and become ill themselves. Psychological complaints, sleep disorders, irritability, depression and anxiety, but also other physical symptoms or alcohol or medication abuse can be alarm signals of impending excessive demands. If necessary, other options for palliative care must then be considered.
