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Table 5 Qualitative Data Analysis

From: Life-sustaining treatment decisions in pediatric intensive care: an Italian survey on ethical concerns

No. 21: What criteria are used in your ward to make these kinds of LST decisions? [Please specify]

• It depends on how and by whom the situation is explained, often a minimum of hope is promoted even when it is not there (RN)

• If the health care team shares the parents’ choice (MD)

• If the parents’ decision is not similar to that of the health care team (MD)

No 23: In your opinion, what criteria do you think should be used? [Please specify]

• I believe that the decision to limit or suspend life support should ALWAYS be made collectively by parents, nurses and doctors, and that doctors should give accurate information to parents to enable them to make informed decisions (RN)

• I think it is not up to us to judge what is dignified or not, we are no one to decide that a person ‘must’ die, we are no one even to say that they ‘must’ live (RN)

• We should always have the intellectual honesty to communicate the real situation and be able to share with the whole team and parents (even the patient if we are dealing with a teenager) and evaluate case by case the best treatment and solutions (RN)

• Giving false hopes or harassing defenseless people is cowardly and disrespectful (RN)

• Seek to share decisions with parents (MD)

No. 25: Problematic aspects of LST decisions. In your experience; what are the most problematic aspects? [Please specify]

• In general, the main problem lies not in the parents who best of all understand the suffering of the child but in the orientation contrary to the withdrawal of care that denotes the culture of doctors, in particular of the senior physician responsible for the PICU, who never wants to involve the Clinical Ethics Committee in any way and leaves the whole burden of decisions and interviews with parents to the doctor on duty, generally young physicians on night duty. After a death, none of the doctors ever want to talk about the case again. Moreover, even some young doctors, just to avoid problems, are willing to sustain ‘accanimento terapeutico’. The nursing staff, on the other hand, is always more sensitive and available for meetings to discuss such cases (MD)

• Caused by not feeling protected (RN)

• The opinions of members of the treating team cannot always be aligned. In these circumstances the opinion of the ethics committee is useful in orienting and choosing a common line, even if not always fully shared by everyone. Sometimes a strong parental opinion can force the team to maintain or continue care that is futile or does not ensure a minimum quality of life for the child (MD)

• Unfortunately, in our reality the withdrawal of some vital supports is not always accepted by everyone and therefore sometimes a limitation of treatments is decided (rather than withdrawal) (MD)

• Different theories and ideologies of the various doctors on the team (RN)

• Often we are afraid of the consequences and prejudices of people, the law often does not even protect professionals. The choice of ‘accanimento terapeutico’ is therefore understandable at times but only for personal protection. With the ‘living will’ something could change for adults, but for pediatrics I am not optimistic (RN)

• ‘accanimento terapeutico’ is used as defensive medicine (RN)

No 27: Other: Please specify (if forced to cause ‘accanimento terapeutico’ for other reasons)

• The massive waste of economic resources is really a HUGE problem in my opinion. It’s a question I ask myself every day! (MD)

• The absence of a CLEAR legislative framework also gives way to a thousand interpretations and above all does not indicate a common approach. The lack of a true ethics consultation (the American model for example) is a serious problem. The [name of hospital is anonymized] Ethics Committee is composed of random people with no experience in resuscitation, and the only intensivist involved is not in the least taken into consideration by the top intensivists who are definitively pro-‘accanimento terapeutico’. The problem is serious and it is the principal cause of burnout among medical and nursing staff (MD)

No: 29: Other Comments:

• Every single case deserves a collegial discussion. In emergency situations, we often find ourselves in the position of having to start life support, even invasive interventions. It is not always easy then when the case becomes oriented toward a poor prognosis and the withdrawal of LST should be undertaken (MD)

• I am a simple nurse and in the face of life events, where we have to decide, I find myself in difficulty regarding the certainty dictated by people superior to me. I believe that in suffering there is no man capable of deciding whether he is right or not, whether he is a head physician or a nurse. Faced with a life touched by a profound problem, where rationality leads us to decide, I listen and let myself be carried away by Faith that helps me to live linked to principles that are important to me (RN)

• Greater support on a psychological and emotional level for staff and parents in the post-mortem and better decision-making would be useful (RN)

• Many circumstances are interfered with by ‘team’ orders and by the fear of those responsible for running into medico-legal situations that could expose them to criticism and denunciations (MD)

• What is missing, in addition to the advice of an ethicist which fortunately would be requested only a few times a year, is NEEDED PSYCHOLOGICAL SUPPORT for the critical care team which would serve to consolidate and amalgamate complex decisions by analyzing the positions of individual members and possibly solving impasses with individuals who have a conflicting view given their subjective experience with end-of-life problems (MD)

• How to establish the concept of “a dignified life” in a manner that is valid for the whole team (RN)

  1. NB: Excerpts of all qualitative data are presented, to demonstrate a range of views disclosed by nurses and physicians
  2. NB: All survey questions and replies have been translated to English from original Italian survey
  3. • ‘Accanimento terapeutico’: This is an Italian expression referring to persistent needless excessively burdensome interventions, for which there is no directly equivalent term in English.
  4. LST Life-sustaining treatment
  5. RN Nurse
  6. MD Physician.