Terminally Ill Patients: Who Takes The Decision About Withdrawing Medical Treatment?

Main Category: Palliative Care / Hospice Care
Also Included In: Respiratory / Asthma;  Cancer / Oncology
Article Date: 27 Jun 2007 - 1:00 PDT

email to a friend   printer friendly   opinions  

Ten countries' respiratory intermediate care units are examined in a major study under the auspices of the European Respiratory Society (ERS).

A decision on the end of life has to be taken for at least one in five patients in respiratory intermediate care units. Medical and nursing staff, anxious not to inflict futile, life-prolonging treatment on dying patients, are faced with a range of options, including withdrawal of treatment or care, orders not to intubate or resuscitate, or resuscitation limited to non-invasive ventilation.

In the forthcoming issue of the European Respiratory Journal (ERJ), the ERS Task Force identifies an urgent need for pan-European harmonisation of advance directives drawn up while patients still have full decision-making capacities.

Respiratory diseases - above all COPD (chronic bronchitis/emphysema) and lung cancer, but also respiratory infections and neuromuscular disorders - are a major cause of mortality, causing approximately one-third of all deaths. Frequently, the patient dies as a result of acute exacerbation of chronic respiratory failure.

While most European patients with final-stage lung disease are treated by pneumologists in specialised intermediate care units, very little is available in terms of data on how end-of-life decisions are taken for such patients. The existing data mainly concern patients hospitalised with acute respiratory disease.

In response to this problem, the European Respiratory Society established a Task Force, headed by Stefano Nava, of the Salvatore Maugeri Foundation at the Pavia Scientific Institute in Italy, and Anita Simonds, from the Brompton Hospital in London, UK. This Task Force, which includes specialists from intermediate care units in Italy, the UK, Austria and Romania, is due to publish its results in July's edition of the ERJ.

Euthanasia remains rare

In order to shed light on end-of-life decision-making, the heads of intermediate care units in a number of European countries were invited to complete a very detailed questionnaire covering a six-month period. Data were obtained from a total of 29 units in ten countries (Austria, Belgium, France, Germany, Italy, Portugal, Romania, Spain, Turkey and the UK).

During the six-month period covered by the study, a total of 6,008 patients were admitted to respiratory intermediate care units, and 1,292 (more than one in five) were the subject of end-of-life decisions. Nava emphasises that the percentages for Northern and Southern European countries were similar.

Withdrawal of treatment (mainly from mechanical ventilation) was chosen in almost a quarter of cases (23%). Orders not to intubate or resuscitate were even more frequent, affecting one in three cases (34%). Another frequently chosen approach was restriction of resuscitation to non-invasive ventilation (31%).

The authors also note that practices are broadly similar across Europe, with the exception of orders not to intubate or resuscitate, which are applied twice as often in Northern Europe (40% of cases) as in Southern Europe. Euthanasia is provided only exceptionally, and the study recorded only one case.

Who decides?

At the same time, Nava and the Task Force looked at who is usually involved in making a life-ending decision. Those directly affected, the patients, can obviously only be a party to the decision if they have the necessary capacities, which happens in just one case out of three. The patient's relatives are involved in over half of cases. "Much more often in Southern Europe," the authors point out, "where the family is in the front line." Also involved are nurses, who are consulted in over half of cases (55.9%), more frequently in Northern Europe.

This study also breaks new ground by quantifying the requests of terminally ill patients or their relatives for attendance by religious leaders, be they priests, imams or rabbis. "In about 30% of cases, the nurses are asked to call a religious leader, but unexpectedly we found this to be commoner in Northern Europe than in the South," Nava points out.

Given the diversity in national legislative provisions on the end of life, it now seems impossible to develop European guidelines for best practice, as Nava notes with regret. At the very least, in his view, European countries should adopt joint rules on "advance directives".
These instructions, drawn up in advance by the patients themselves, would provide precious guidance to the medical team in making a difficult decision, at a time when the person most directly concerned can no longer be consulted.

The European Respiratory Journal is the peer-reviewed scientific publication of the European Respiratory Society (more than 8,000 specialists in lung diseases and respiratory medicine in Europe, the United States and Australia).

European Respiratory Journal

• Additional
• References
• Citations