Living will – the law
The living will has been regulated by law since September 1, 2009 in paragraph (§) 1901a of the German Civil Code (BGB). It can be written by any adult capable of giving consent and can also be revoked informally at any time. It is only valid if it is in writing, signed by the issuer in person or signed by a notarized hand sign (a hand sign is a sign in the form of letters or other symbols that can be made by people who cannot write their full name). Notarization of the signature or notarization of the living will is not mandatory.
A living will does not have an “expiration date.” However, it is advisable to renew or confirm it at certain intervals (e.g. annually). Perhaps one’s own opinion has changed in the meantime with regard to one or another medical measure (e.g. artificial nutrition in the final stage of an incurable, fatal illness).
Living will does not replace health care proxy
It therefore makes sense to combine the living will with a health care proxy. The person you trust, whom you have named in the health care proxy, should ensure that the interests you have defined in the living will are also enforced. It is best to give this person a copy of your living will.
Declaring your will with a living will
As long as a person is still in full possession of his or her mental faculties, he or she can make decisions about all necessary medical measures. However, it becomes problematic if a patient can no longer make decisions for himself due to an illness (e.g. dementia, coma vigil).
With a written living will, people can express which medical measures should be carried out or omitted in certain situations even before such an emergency occurs. This means: With the living will, a patient can ensure that his or her own will is still decisive for treatment even if the patient can no longer express it.
Any stipulations in the living will that violate a legal prohibition are disregarded. For example, it is not possible to demand active euthanasia from the physician.
Advance decisions for the last phase of life
With a living will, you can give instructions for end-of-life care in the event that you become incapable of making decisions. On the one hand, this involves a possible waiver of treatment. This means that no life-prolonging measures will be taken if a person is terminally ill and dying.
On the other hand, it is about palliative treatment. Terminally ill people are given pain-relieving drugs in sufficient doses, even if they may hasten the onset of death as a side effect. This has nothing to do with active euthanasia, which is prohibited by law, i.e. the deliberate killing of a person.
You can also state in your will how you personally feel about organ donation.
Avoiding pitfalls
Tell your relatives and your family doctor that you have written this document and where you keep it. It’s also best to put a card in your wallet that indicates you have a living will.
Review your living will regularly (preferably annually) and sign it with a current date each time. This makes it clear that your will remains unchanged. Because if the document is already decades old, there may be problems.
Clear wording
If the stipulations in a living will are too vague or general, they are not legally binding. This was decided by the Federal Court of Justice in August 2016. The patient’s representatives then decide together with the doctors on the upcoming therapy – the basis is then what the patient would probably have wanted.
To avoid this, you should formulate your living will as specifically as possible. For example, do not write “I do not want to be hooked up to tubes” or “I want to die in peace.” Also avoid general formulations such as “As long as there is a realistic prospect of maintaining a tolerable life, I wish to receive medical and nursing assistance to the fullest extent of the reasonable possibilities”. Such statements are too unspecific and therefore leave too much room for interpretation.
- Should artificial nutrition be started, continued or discontinued when you are in a vegetative state?
- Should the dose of painkillers and sedatives be chosen so high that you do not experience any discomfort, even though a slight reduction in your lifespan may be the result?
- Do you want to be resuscitated or not in a disease situation that will result in death, sudden cardiovascular arrest or respiratory failure?
In addition to things you object to, you can also list items you want. These include, for example, certain nursing measures such as mouth care to prevent thirst, or special medications to effectively control pain, shortness of breath, anxiety, agitation, vomiting and other symptoms.
Text modules for living wills are offered by various bodies – as a suggestion and formulation aid, for example by the Federal Ministry of Justice at: https://www.bundesgesundheitsministerium.de/patientenverfuegung.html.
It is advisable to discuss a living will with your family doctor or another doctor you trust. He or she can best explain to you which measures are possible in which situations and what the chances and risks are. Then you can weigh up which decisions best fit your values.
Complementing personal values
If, for example, a medical situation later arises to which the stipulations in your living will do not exactly apply, a representative (guardian or proxy) must decide which medical measures you would agree to if you were still capable of making decisions. The beliefs and values you have added to your living will can be very helpful in this process.
Absence of an advance directive
Even if there is no living will at all, the guardian or authorized representative must determine the presumed will of the patient. Again, this is done with reference to previous oral or written statements, ethical or religious beliefs, or other personal values of the patient.
Arbitration board for living wills
The German Patient Protection Foundation has set up an arbitration board to advise and mediate in conflicts concerning living wills. Relatives and physicians can seek expert help there if the interpretation of an advance directive is in doubt. The service is free of charge.
The arbitration board can be reached by phone at 0231-7380730 or on the Internet at https://www.stiftung-patientenschutz.de/service/patientenverfuegung_vollmacht/schiedsstelle-patientenverfuegung.
