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End-of-life decision-making in six European countries: descriptive study

On the 17th June 2003, The Lancet published a report entitled ‘End-of-life decision-making in six European countries: descriptive study’, which examines the frequency and characteristics of end-of-life decision-making practices in Belgium (Flanders), Denmark, Italy (four areas), the Netherlands, Sweden and the German-speaking part of Switzerland.

The study – of which the third Remmelink study was a part – used random samples of deaths arising between June 2001 and February 2002, so it does not take into account the new Dutch and Belgian laws. Its design was identical to that of previous Dutch and Belgian studies.

In the report, medical end-of-life decisions were defined as: withholding or withdrawing life-prolonging treatment, alleviating pain and other symptoms with drugs in doses large enough to hasten death as a possible or certain side-effect, euthanasia and doctor-assisted suicide (the administration, prescription or supply of drugs to end life at the patient’s explicit request).

Some of the report’s key findings are set out below:

  1. The proportion of deaths that were preceded by any end-of-life decision ranged between 23% (Italy) and 51% (Switzerland).
  2. Doctor-assisted dying, which was defined as the “administration of drugs with the explicit intention of hastening death” was reported in all countries. The proportion ranged from about 1% or less in Denmark, Italy, Sweden, and Switzerland, to 1.82% in Belgium and 3.4% in the Netherlands. However:

    “Ending of life without the patient’s explicit request happened more frequently than euthanasia in all countries apart from the Netherlands; this type of doctor-assisted death was the only one recorded in Sweden (0.23% of all deaths).”

  3. Frequency of decisions to withhold or withdraw potentially life-prolonging treatments was much higher than doctor-assisted dying in most countries, but varied more. Such decisions were made in 4% of all deaths in Italy, about 14% in Belgium, Denmark, and Sweden, 20% in the Netherlands, and 27% in Switzerland.
  4. In general, the different types of end-of-life decisions were made for patients with similar characteristics within the studied countries:
    • “Doctor-assisted dying happened frequently in patients younger than 80 years and in patients with cancer in all countries.”
    • “Non-treatment decisions were also made for patients in all age groups, but most frequently for those aged 80 or older. These decisions are not associated with specific causes or places of death.”

    In all countries, end-of-life decision-making was most frequent for incompetent patients. Significantly, however:

    • “The proportion of competent patients was high in countries in which the total number of end-of-life decisions was high – eg, the Netherlands (35%) and Switzerland (32%) – and vice versa. When patients were competent, the end-of-life decision was discussed with the patient and relatives most frequently in the Netherlands and least frequently in Italy and Sweden”
    • Of those incompetent patients whose death was preceded by an end-of-life decision, “the proportion with whom the decision was discussed or who had previously expressed a wish was highest (34%) in the Netherlands and Switzerland, and the decision was discussed with relatives most frequently in the Netherlands (85%) and Belgium (77%).”
    • “In Italy and Sweden, more than 50% of all end-of-life decisions, whether for competent or incompetent patients, were discussed with neither the patient nor with relatives”.
    • “Doctors consulted colleagues about their end-of-life decisions for about 40% of all patients in the Netherlands, Belgium and Switzerland, and for fewer than 20% in the other countries.

The report concluded that end-of-life decisions frequently precede dying in all participating countries:

“In all studied countries, death comes suddenly and unexpectedly in about a third of all cases. For the remaining two-thirds of deaths, end-of-life decision-making seems to be an important issue.”

“Despite important advances in pain and symptom management at the end of life, many dying patients have pain and other physical and mental problems. Cardiopulmonary resuscitation, mechanical ventilation, and nasal-gastric feeding tubes are lifesaving for some patients, but for others they prolong dying and can result in great suffering for patients and their families. Therefore, involvement of patients and relatives in medical decision-making at the end of life is likely to result in higher frequencies of end-of-life decisions.”

It recommends that:

“Variance in types of end-of-life decisions and decision-making characteristics should be further explored to enhance understanding of end-of-life care in modern medicine, in which the pursuit of a peaceful death seems to be widely recognised as an important goal, in addition to more traditional goals such as curing disease and avoiding premature death.”

The report was prepared by Agnes van der Heide, Luc Deliens, Karin Faisst, Tore Nilstun, Eugenio Paci, Gerrit van der Wal, and Paul J van der Maas on behalf of the EURELD consortium. It was supported by a grant of the 5th framework programme of the European Commission. The Swiss part of the project was funded by the Swiss Federal Office for Education.

To access a full copy of the report go here .