Existential decision-making in a fatal progressive disease: how much do legal and medical frameworks matter?

Abstract

BackgroundHealthcare legislation in European countries is similar in many respects. Most importantly, the framework of informed consent determines that physicians have the duty to provide detailed information about available therapeutic options and that patients have the right to refuse measures that contradict their personal values. However, when it comes to end-of-life decision-making a number of differences exist in the more specific regulations of individual countries. These differences and how they might nevertheless impact patient’s choices will be addressed in the current debate.Main textIn this article we show how the legal and medical frameworks of Germany, Poland and Sweden differ with regard to end-of-life decisions for patients with a fatal progressive disease. Taking Amyotrophic Lateral Sclerosis (ALS) as an example, we systematically compare clinical guidelines and healthcare law, pointing out the country-specific differences most relevant for existential decision-making. A fictional case report discusses the implications of these differences for a patient with ALS living in either of the three countries. Patients with ALS in Germany, Poland and Sweden are confronted with a similar spectrum of treatment options. However, the analysis of the normative frameworks shows that the conditions for making existential decisions differ considerably in Germany, Poland and Sweden. Specifically, these differences concern (1) the legal status of advance directives, (2) the conditions under which life-sustaining therapies are started or withheld, and (3) the legal regulations on assisted dying.ConclusionAccording to the presented data, regulations of terminating life-sustaining treatments and the framework of “informed consent” are quite differently understood and implemented in the legal setting of the three countries. It is possible, and even likely, that these differences in the legal and medical frameworks have a considerable influence on existential decisions of patients with ALS.

Bioethics and Palliative Care in Primary Health Care

“…Regulations differ from one country to another, and such differences may affect the patient's choices. In general, the principle of autonomy dictates that physicians have the duty to provide detailed information on the available therapeutic options and that patients have the right to refuse measures that go against their personal values [27].…”

“…A study mentions three distinct situations involving bioethical problems in existential decision-making: the first situation concerns the ethical responsibility of informing patients about the available treatment options and future implications of the diagnosis; the second situation concerns the retention or implementation of long-term supportive therapies without therapeutic utility; and the third situation relates to the continuation or discontinuation of measures that sustain life in different cases. In some countries, there is a fourth option, which is of hastening death through the application of active drugs [27].…”

“…Regarding the continuation of life support or maintenance therapies, this problem arose with the discovery of mechanical ventilation. On the one hand, the physician has the authority to limit treatment in cases of requests for prolonged futile therapy; however, the right of the patients or their families to actively participate in decision-making should be respected [27].…”

Experience in Rehabilitation Medicine Affects Prognosis and End-of-Life Decision-Making of Neurologists: A Case-Based Survey

“…A number of studies have shown that age, gender, religion, and geographic region are associated with willingness to forgo life-sustaining treatments [19–21]. The influence of geographic region is likely because attitudes and legal settings regarding end-of-life decision-making vary within Europe [22, 23].…”

Ethical challenges in tracheostomy-assisted ventilation in amyotrophic lateral sclerosis

“…Whereas the ventilator is itself rather inexpensive, the economic, social and emotional burdens of 24/7 care are challenging both to formal and informal caregivers [7]. The use of TIV in ALS varies ranging from 0% of patients from the UK, 1-14% in the USA, 3% in Germany, 2-5% in France, 11% in northern Italy, to 27-45% in Japan, likely reflecting cultural, economic, legal and organisational differences both within and outside the healthcare system [8,9]. In Norway and Sweden, 6.7% of men and 3.8% of women living with ALS between 2002 and 2007 used TIV, suggesting that gender may also influence preferences or access to such treatment [10].…”