Services for the critically or terminally ill

At the end of their life, nobody should have to be alone. The terminally ill should be cared for and supported in every respect. So critically and terminally ill people are entitled to specific services, particularly to palliative care.

“Palliative” means: the measures aim to alleviate suffering and the consequences of illnesses when there is no longer any prospect of a cure. This includes medical, nursing, psychological, and pastoral care for people at the end of life. Palliative care is possible at home, in hospital, in a care facility, or in a hospice.

Hospice work is all aimed at enabling the terminally ill to live a dignified, self-determined life until the end. Sufferers can draw on either outpatient hospice services or inpatient care. Outpatient hospice services consist of trained, voluntary, terminal care. It is not just aimed at the terminally ill in the home environment, but also at people in inpatient care facilities, institutions for social integration assistance for the disabled, and child and adolescent support facilities.

People covered by statutory health insurance who do not need hospital treatment are entitled to a subsidy towards inpatient or semi-inpatient care in hospices – providing outpatient care cannot be provided in the home or within the insured person's family. Children's hospices are a special case: there, even more consideration is given to family members than in hospices for adults. These facilities are also set up to tend to children's specific needs.

Many critically ill people want to remain in their home environment and die there. They are entitled to outpatient specialist palliative care (SPC). This includes palliative medical and palliative nursing services and their coordination, particularly for pain therapy and symptom control.

Outpatient specialist palliative care can be requested by patients who are incurable or so critically ill that their life expectancy is limited and particularly time-consuming care is required. Outpatient specialist palliative care services must be prescribed by doctors and approved by the health insurance provider.

Examples of SPC services are personal treatment plans and preventive crisis management: round the clock on-call readiness for emergencies and crisis intervention. But also the psychosocial support that is given in collaboration, for example, with pastoral care and outpatient hospice services. The aim is to avoid hospitalizations. Rather, patients can spend their end-of-life phase at home, as they wish.

With outpatient specialist palliative care, doctors and carers work together as a team. There is also collaboration with other carers, e.g. psychologists and with the hospice movement. Other service providers, such as physiotherapists and pharmacies, might also be involved as all-round care is coordinated. Patients’ care is aligned with their needs. The aim is to alleviate, as far as possible, symptoms such as pain, nausea, loss of appetite, breathlessness, and mental suffering.

To improve funding of children's and adults’ inpatient hospices, health insurance providers’ minimum subsidies were raised by the Hospice and Palliative Act in 2015. Hospices whose funding used to be below average now receive a higher daily rate for caring for the critically ill.

Health insurance providers now cover 95 percent, rather than the old 90 percent, of subsidy-eligible costs for hospice inpatient care. Volunteer work and donations cover the remaining costs. This underlines the fact that the hospice movement originated through voluntary commitment and remains supported by it. Insured persons do not have to pay anything towards their stay in a hospice.

Subsidies for inpatient hospice services cover both staff costs and the cost of materials. These include travel costs for voluntary staff, for example. It is also ensured that there is an adequate ratio of paid workers to voluntary workers.

People who are critically or terminally ill are entitled to personalized advice and help. The health insurance providers must inform insured people about hospice and palliative care services. This also includes providing information about personal care options for the end-of-life phase. These particularly include subjects such as living wills, power of attorney for health and welfare, and advance healthcare directives.

These days terminal care is an explicit part of the social care insurance system's mandate of care. The Hospice and Palliative Act also stipulates that inpatient nursing facilities can provide advice on care plans during the end-of-life phase.

The end-of-life health care plan is a personalized advice option covering medical and nursing, psychosocial and/or pastoral care during the end-of-life phase which is tailored to the situation of the individual entitled to the service. The advice should enable the individual to make their own decisions about treatment, care and nursing measures. Documentation of the decisions made should serve as the basis for treatment and care, in crisis situations and/or at end-of-life, which complies with the wishes expressed. The advice should include explaining support offers for terminal care and possible psychosocial care.