The present study showed that physicians were involved in various EoL practices. Interventions in neonates were found strongly related to their attitudes. A high attitude score is indicative of the quality of life approach (otherwise not sustain life at any cost) while a low score agrees with the approach of the absolute value or sanctity of life approach (otherwise sustain life despite potential severe morbidities). EoL practices differ in association to the attitude score, with a higher attitude score favoring quality of life and limitation of intensive care at a more aggressive model of approach, while a lower score favors sustaining life by continuation of treatment at a more conservative model of approach; additionally, religion importance and position on legal framework were the main determinants of the attitude score.
Daglas et al study on the attitude of Greek healthcare professionals in NICUs21 22 reported a mean attitude score of 3.1 indicative that Greek healthcare professionals tended to support the value of human life. Contrarily, our study reports an average attitude score of 5.8 indicative of a shift towards the value for quality of life. This difference could be attributed to various factors: a) different sample composition; in the above mentioned study 251 healthcare professionals participated and only 71 were physicians, while our study is focused on physicians’ opinion (156 doctors’ respondents), a more than the double the size sample, b) different approach to calculate the attitude score: Daglas et al. study calculated the attitude score as the sum of each participant’s answers to the 7 questions that were found important; in our study 6 items of the questionnaire that were found important were weighted by their loadings before extracting the final attitude score, and finally, c) our study data were collected 10 years after Daglas et al. study (from May 2009-May 2011). During these years Greece faced a severe economic recession with many burdens imposed on the population on social and cultural level. Due to the fact that during the time elapsed physicians have experienced survivors with major disability born at the limit of viability or had faced major events at birth, we could speculate that a redefinition of their personal beliefs and way of thinking has occurred.
Recent data in the literature shows increased frequency of withholding or withdrawing treatment.24 25 EURONIC multicentre ethical research study and subsequent studies showed that withholding or withdrawing treatment is a common practice in several European NICUs and worldwide.1 14 26-29 One out of three till five physicians decided withholding of treatment, while one out of ten decided withdrawing of treatment: these ratios are lower than these reported in other European countries and much similar to that in South Mediterranean countries. The absence of a clear distinction between treatment withdrawal and assisted dying is a key factor in differing practices with treatment withholding.30 Not all professionals accept that withholding and withdrawing treatment are morally equivalent. Moreover, there are arguments that withdrawal of treatment leads to assisted dying.9 Supportive to this pattern is the fact that only one out of five physicians chose to administer drugs even at risk of death lower to recent studies.31 Physicians seem to accept non-treatment decisions (as to withhold or withdraw treatment) and administration of drugs even at risk of death, clearly outside Greek legal framework (article 300 of the Penal Code and article 29 of the Code of Medical Ethics refers to euthanasia strictly prohibiting the act).
Lack of legal framework for NICUs various legal constraints, of firm policies even within NICUs, psychological support31, avoidance of approaching in public ethical issues that raise dilemmas lead to a more conservative EoL approach by physicians.
Decision-making is a multifactorial task, dependent on knowledge, relationships, life experiences and subjective approach as attitude for life issues.17 The majority of studies on end-of-life care in severely ill newborns describe physicians’ attitudes and not their implemented practices.28 Attitude score relates to quality of life and limitation of intensive care or sustaining life and continuation of treatment and is well established by findings in the EURONIC project.1 In the present study we showed that physicians’ EoL reported practices were associated with the attitude score; physicians with a higher attitude score showed a tendency for a positive answer, while those with lower attitude score were prone to non-participating. Attitude scores did not differ significantly only when physicians “continued ongoing treatment without adding other therapeutic interventions”. The higher the physicians’ attitude score, the more probable action was to intervene in EoL practices, showing a clear preference to limit life without hope, while a lower score was oriented towards prolonging life. Differences concerning the attitude among physicians in other studies could be attributed to the different cultural and social background, in addition to physicians’ characteristics.12-15 30 32 Rebagliato et al reported that after controlling for confounders, country of origin remained a significant predictor of physicians’ attitude score and practices suggestive of social and cultural factors.1
Physicians’ characteristics with a statistically different attitude score were education, involvement in research, religion importance and position on changing the current legal framework; in the final analysis only religiousness and law change belief remained as the main predictors of the attitude score. Religious beliefs are highly influential factors when making life and death decisions for infants, both for the physicians and parents.33
The effect of physician’s characteristics and beliefs shows that clinical factors, legislation and social culture are not the only predictors for ethical decisions. Indeed, as ethical decisions derive from personal moral principles and values, parents have the right to be informed on physicians’ attitudes and personal beliefs.20 33
Additionally to previous research,1 31 male gender, younger age, less time of experience, participation in research projects and most importantly law change belief were strong indicators for EoL practices towards limiting intensive care.
Strengths and limitations
The sample which is national representative, the prospective design and detailed data collection are strong points of the present study. Since objectives were met, it may provide a ground for generalization. There are several limitations to be underlined. First, the attitude score was derived through factorial analysis by selecting the statements that showed a high correlation and internal consistency, as well as content validity with attitudes towards life value and support. Second, the subjective nature of the study cannot exclude underreporting of EoLDs, despite protection of anonymity and confidentiality. Third, we did not collect demographic data for the non participated physicians and finally 5 out of 28 NICUs did not participate in the study and were excluded.
Implications
EoLDs and clinical indications for therapeutic limitations vary considerably between countries. As EoLDs are a key-factor for dying neonates, cross-cultural comparison of EoL practices is important, when NICU outcomes between countries are compared. There are no universal standards for treating neonates at EoL, and literature reveals these variations, with few studies examining EoL protocols. The extent to which physicians’ personal values and attitudes are associated with their practices of EoLDs remains to be clarified.