The report on end-of-life management in Switzerland by the Swiss National Science Foundation (SNSF) and the National Research Programme (NRP 67) is identifying gaps and reflecting on how to improve the management strategy.
Most patients die in hospital where palliative care is still not widely practised. Assistance to end one's life at home is "not widely known or accessible", the cost of care "is not covered by health insurance" and professional guidance for carers is non-existent.
For individuals who end their lives in institutions, "a medical decision is taken" in order to "not prolong or even shorten a patient's life": "In 25% of deaths, doctors did not consult the individual prior to their decision despite the fact that the patient was still capable of making a judgement. Doctors consulted relatives or knew the patient's end-of-life choices in only 50% of cases. This figure increases to 66% when the individual has a cognitive impairment or disability, even if he/she is capable or partially capable of making a judgement". These decisions do not comply with legislation or "the principles of medical ethics".
Doctors feel out of their depth when assessing a patient's "ability to make a judgement", and "without any valid tools to assist them in the evaluation process". They feel "unsure of themselves" when faced with end-of-life questions of a legal, spiritual or ethical nature. This feeling is enhanced by a lack of training and dialogue. In its report, NRP 67 also calls for "professional associations to guarantee initial and continuous training in palliative care and to clarify restrictive medical-ethical principles".
The lack of co-operation between the end-of-life stakeholders—a source of discontinuity and error in terms of follow-up and care—is also highlighted. This shows that the monitoring of end-of-life individual requirements focuses too closely on the "curative" aspect.
The report denounces "unsatisfactory medical-legal audits in assisted suicide and deep sedation procedures". Only half of the assisted suicides registered with the Swiss Federal Statistical Office between 1985 and 2013 "were in fact investigated".
Finally, in 2013, "one in six people died in hospital following the discontinuation of food and water whilst the patient was sedated", i.e. following euthanasia which is nevertheless against the law to this day in Switzerland.
Institut européen de bioéthique (13/12/2017)