Proper palliative care makes assisted dying unnecessary

The experience from Belgium suggests that euthanasia can have unexpected consequences for a patient's autonomy,

Article published in The Economist, Aug 24th 2018

SINCE 2002 Belgium has been one of the very few countries in the world in which doctors can perform euthanasia. Patients need to be in a hopeless state of constant and unbearable physical or mental pain that cannot be alleviated, or suffering as a result of a serious and incurable disorder caused by an accident or illness.

The main motivation for the change in the law was to give doctors the possibility to relieve physical symptoms such as pain, suffocation or anxiety in terminal disease. However, euthanasia is now applied in patients with longer life expectancy who are not suffering unbearable physical symptoms but experiencing a lack of meaning in life and limitations in their activities: for instance in chronic neurodegenerative or psychiatric diseases such as dementia, autism or depression. Even in patients with underlying diseases, such as cancer, euthanasia is often requested for psychological reasons such as loss of autonomy and fear of future suffering or being a burden to others. In 2015, 2,022 patients underwent euthanasia in Belgium, among them 299 in non-terminal circumstances.

Symptoms of physical suffering at the end of a disease can be managed with medical therapies and palliative sedation if necessary, making euthanasia unnecessary. However, the Belgian experience shows that when you allow euthanasia for severe physical suffering at the end of a disease, little by little, doctors will be asked to solve the underlying psychological and spiritual problems of their patients by administering death. Two terms often used to promote this practice are "to die with dignity" and "autonomy".

It is evident that doctors cannot decide in a paternalistic way how a disease should be treated and that patients should be informed extensively about the severity of the disease, its impact on quality of life, life expectancy, the options to cure or slow down the disease, and all the possibilities of supportive care. Doctors should give correct information on the situation of their patients and should not avoid "bad news". Therapeutic obstinacy should be avoided. Patients have the right to refuse any therapy, and certainly therapies prolonging their lives in poor conditions. Antibiotics should not always be started in case of infections. Stents should not always be used in order to avoid kidney or liver failure. It is up to doctors and their patients to decide which therapies will be applied and if natural death due to the disease will be postponed or not. The patient's autonomy has an important role in these end-of-life decisions.

However, guiding the natural evolution of the disease towards death and administering all possible supportive care, including palliative sedation if necessary, in continuous discussion with the patient and his family, is something which is very different from the direct induction of death through active euthanasia. In the first case, we are aiming to control the symptoms, even if, by doing so, life may be unintentionally shortened. In the latter case, death is induced directly and intentionally.

Moreover, disease can be a new opportunity for human growth and for the exercise of independence. According to Viktor Frankl, an Austrian psychoanalyst and the founder of logotherapy, humans can reach fulfilment through the discovery of meaning in their lives and through relationships with others. During a disease, one can discover the care that others provide. Even in cases of chronic diseases we can always find new ways to find a meaning in life.

It is my impression that those who often ask for euthanasia are suffering from depression. Is administering death the solution that our society proposes to loneliness and mental illness? "Death" is now replacing "care", and "autonomy" replacing "solidarity". As such, weaker patients can become victims of assisted dying. When assisted dying becomes more frequent and is even proposed by doctors, a patient's independence can be put under pressure. Also, the decision of a patient to be killed by another person can be a serious burden for his family, who would suffer from this decision, and for doctors, who will naturally consider this act as a difficult experience.

What about the autonomy of doctors or institutions who are opposed to the practice of direct killing? And if autonomy is the most important value, what about campaigns against suicide? Should we decide in a paternalistic way, based on guidelines or laws, who can be granted assisted suicide and who should be convinced not to go for suicide? Autonomy is an important aspect of our lives, but it is a means to reach fulfilment, not the goal.

Benoit Beuselinck is a medical oncologist at the University Hospital Leuven in Belgium and a professor at the department of oncology of the Catholic University of Leuven