Is it permissible to refuse food or to discontinue nutritional therapy?
More than 20% of all people with ALS in Germany receive nutrition via a PEG tube at some point during the course of their illness.
Nutrition via a PEG tube is considered a life-prolonging measure. In principle, it is possible to discontinue nutrition via a PEG tube—even if this results in a shorter remaining life expectancy. Discontinuing PEG feeding falls under the formal category of treatment withdrawal, which is medically, ethically, and legally permissible in Germany.
This should be distinguished from the decision to forgo food intake—even in the absence of a PEG tube. The reduction or complete cessation of nutrition (food and fluids) is referred to as “terminal fasting.” Terminal fasting is also ethically permissible in Germany. A broad medical and ethical consensus has been reached in Germany on the issue of terminal fasting.
Fasting at the end of life is not considered “withdrawal of treatment,” since nutrition is not a form of therapy in the strict sense. In palliative care, the term “fasting at the end of life” is not used; instead, it is referred to as “voluntary refusal of food and fluids.”
“Voluntary abstinence from food and fluids” is an ongoing process that lasts several days until death occurs. Furthermore, it is possible to reverse the decision to abstain from food without any lasting consequences.
Furthermore, studies to date show that the voluntary refusal of food and drink and the associated process of dying are not accompanied by suffering. However, for family members, witnessing the process of dying resulting from the voluntary refusal of food and drink can be a source of psychosocial distress.
If food and fluids are completely withheld, the process of dying is complete within 14 days for the majority of those affected.
Symptoms associated with the withdrawal of food and fluids may include apathy and drowsiness, as well as confusion and restlessness. Restlessness, in particular, can be alleviated—if present—through pharmacological and palliative care measures. The use of sedative medications is also justified in this situation.
The German Society for Palliative Medicine (DPG) does not consider the palliative relief of any feelings of thirst or hunger that may arise to be a criminal offense.
In certain situations, voluntarily forgoing food and fluids is an alternative to discontinuing existing mechanical ventilation if the circumstances surrounding the discontinuation of ventilation (particularly admission to a hospital or hospice) are unacceptable to the patient.