Palliative care | More space for patient wishes

Even seriously ill people who need to be isolated do not just have medical needs. Photo: DPA/Dirk Waem Palliative medicine doctors work in the border region: diseases are advanced and can no longer be cured, life will not last long - the quality of life is all the more important. Medically, the relief of pain, shortness of breath or nausea is required here. In addition, there are various other needs, including social or spiritual. It can be reassuring for patients to be cared for by a palliative care team in these final days and weeks - in the hospital, in a nursing home, in a hospice or in their own home.

The relevant services and structures do not yet exist sufficiently - and they are currently under additional pressure. There is a lack of staff, especially in nursing. Questions of this kind are on the agenda of the 16th Congress of the German Society for Palliative Medicine (DGP), which is taking place this week in Freiburg. Until Saturday, 1,800 people from various professions will be exchanging ideas there, including doctors, nurses, physical and creative therapists, but also psychologists, social workers and pastors.

»Palliative medicine can effectively contribute to avoiding overtreatment at the end of life.«

In addition to staffing concerns and the pressure from financing problems throughout the healthcare system, there is another factor that indirectly calls into question the purpose of palliative care. This is the “dynamic of euthanasia practice that is taking on a life of its own,” explains Bernd Alt-Epping, who has just been elected as the new DGP President. The internist and oncologist heads a department for palliative medicine at Heidelberg University Hospital. He believes it is important that the competencies of palliative medicine are better recognized both in medicine and in society as a whole. On the one hand, this could “effectively contribute to avoiding overtreatment at the end of life.”

The fear of hanging almost defenseless from tubes and apparatus shortly before death drives people to secure an emergency exit through assisted suicide. This is also legally possible in Germany through various clubs that make corresponding offers. Palliative medicine specialists like Alt-Epping see a lot of uncontrolled growth here. They fear a lack of medical care and the uncertain determination of responsibility for those who want to commit suicide.

In order to ensure better data availability, a suicide assistance register has been in place since September. The associated research network is funded by the German Research Foundation. It is aimed at people who have received requests for assistance with suicide or have provided suicide assistance since November 1, 2024. The aim is also to standardize quality criteria for assessing the ability to self-determination.

What does palliative care offer for seriously ill people at the end of life now look like? How can fears be taken away? »All patients actually want to get well again. If it is not realistic to achieve this, a therapy goal must be found, the individual patient's wishes. Palliative care specialists can say which therapies would be suitable. The patient can consent or not,” says Gerhild Becker, describing the process. The doctor and theologian holds the chair for palliative medicine at the University of Freiburg. »But there is not enough speaking medicine. The dialogue is shortened, something is done medically, often not the right thing. From Becker's point of view, it is not just the monetary interest of hospitals, for example, that plays the decisive role.

However, the palliative care offer has a further meaning beyond the patient's wishes. Nursing staff (but also doctors) are placed under a high emotional burden due to care that is not accepted by patients - and their strengths are also limited. From the doctors' point of view, boundaries should be recognized and structures changed. Cost savings are not the top priority, but they are also seen. Because medical interventions that are no longer effective are also taking place in intensive care units, for example, which are expensive and time-consuming to operate.

There is also a need for change in emergency care. In the course of the upcoming reform, the problem of frequent palliative situations in emergency operations was recognized, "without any viable concepts resulting from this so far," says DGP managing director Heiner Melching. Emergency doctors also agree that there are still too many hospital admissions - including from nursing homes - that are not wanted by those affected at the end of life.

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