When newborn infants are bound to die

Withholding and withdrawing of intensive care of severely ill newborns may occasionally be needed when there is severe injury and extremely poor prognosis. In such cases, strict guidelines and procedures should be followed. In this issue of Acta Paediatrica, Arlettaz et al. describe such guidelines and report practice from the University Hospital in Zürich. To ensure an unbiased discussion, it is important that those who make decisions regularly receive input from external sources regarding indications of viability. This may be the case if, for instance, a unit has decided that the limit of viability is < 26 wk, and many children with good life expectancy would in such units be denied intensive care. Does a liberal view on withholding or withdrawing treatment lead to poorer overall outcome results even for babies above the threshold of viability specified by the institution? Conclusion: Strict procedures should be followed in the case of withholding or withdrawing intensive care of severely ill newborn infants. In every institution, the indications for ending life should be discussed on a regular basis, preferably with external input. However, euthanasia of newborn infants is not compatible with Western cultural traditions and should be abandoned.      

Physicians' use of guidelines and attitudes to withholding and withdrawing treatment for extremely premature neonates in Norway

OBJECTIVES: To examine if explicit written guidelines for withholding and withdrawing treatment for extremely premature infants exist and are used in obstetric and paediatric units in Norway, and to explore changes in attitudes and which factors are considered important when making decisions regarding life support. METHODS: Cross-sectional postal survey addressed to the medical directors of all the 46 obstetric and the 28 paediatric units in Norway. RESULTS: The response rate was 84%. Half the units had guidelines for withholding and one quarter for withdrawing life support. Most of them were non-written informal guidelines. The most important factors for withholding treatment were gestational age and vitality while risk of severe disability and future quality of life were the major concerns for withdrawing treatment. The mean reported gestational age threshold for resuscitating infants decreased from 23.6 weeks (SD +/- 0.6) in a study from 1998 to 23.0 weeks (SD +/- 0.8) in 2005 (p = 0.001). Physicians did not perceive this change in threshold, but 1/3 felt that decisions regarding provision of life support had become more difficult. Almost half of the responding physicians agreed with the statement that Norway is too liberal in its provision of life support to extremely premature infants. CONCLUSION: The criteria for whom to provide life support or not are imprecise and may be subject to unperceived changes. Explicit local guidelines for the decision-making process may secure legitimacy and fair treatment options.     

Discussing withdrawing and withholding of life-sustaining medical treatment in a tertiary paediatric hospital: a survey of clinician attitudes and practices

Aim:   To better understand current attitudes and practices relating to discussions concerning the withholding and withdrawing of life-sustaining medical treatment (WWLSMT) among medical staff in the paediatric setting.
Methods:   An anonymous online survey of paediatricians (senior medical staff – SMS) and paediatric trainees (junior medical staff – JMS) likely to be involved in the care of children with life limiting illness.
Results:   A total of 162 responses were obtained (response rate 42%). SMS indicated feeling more comfortable with their abilities to discuss WWLSMT than JMS. Barriers to discussing WWLSMT were numerous and included clinician concerns about family readiness for the discussion, prognostic uncertainty, family disagreement with the treating team regarding the child's prognosis/diagnosis and concerns about how to manage family requests for treatments that are not perceived to be in the child's best interests. Fifty-eight per cent of JMS and 35.8% of SMS reported receiving no specific communication training regarding WWLSMT. Most learned through experience and by observing more senior colleagues. There was a high level of support for additional training in this area and for the provision of resources such as discussion guidelines and a structured form for documenting the outcomes WWLSMT discussions.
Conclusion:   The majority of JMS feel less comfortable with their abilities to facilitate these discussions than their senior colleagues. The results of this study suggest that although confidence correlates with experience, junior and senior clinicians are eager to improve their skills through ongoing professional development and the provision of resources. The education needs of JMS and SMS appear to be different.     

Withholding treatment, withdrawing treatment, and palliative care in the neonatal intensive care unit

Advances in pharmacology and technology have sharply reduced mortality of extremely preterm infants at the expense of an increasing number of survivors with handicaps and disabilities. The EURONIC study among neonatal intensive care units across Europe demonstrates that treatment of infants born at the limits of viability raises challenging ethical, moral, legal, and emotional dilemmas among neonatologists, nurses, and parents alike. When is it wise to withhold or withdraw intensive care and, if so, what are the needs of the nonviable or dying infant, family, and neonatal staff to provide a humane and compassionate death? This process begins with a thorough determination of diagnosis and prognosis, followed by decision making on the basis of futility of treatment or quality-of-life issues, and counseling of parents. Withholding or withdrawing of intensive care should be synonymous with palliative care. Perinatal audit and after-care of the family complete the process. The Dutch viewpoint and practice guidelines on withholding and withdrawing of neonatal intensive care are presented.     

Physician end-of-life decision-making in newborns in a less developed health care setting: insight in considerations and implementation

BACKGROUND: A substantial proportion of the decisions to withhold or withdraw life-prolonging treatment are based on the newborn's predicted poor quality of life. All previous studies on end-of-life decisions were done in countries with adequate support for disabled neonatal intensive care units (NICU) survivors. Data on quality-of-life considerations in countries with developing health care are not available yet. AIM: The aim of the study was to examine the considerations of physicians taking end-of-life decisions in sick newborns and how those decisions are carried out in practice in a less developed health care setting. METHOD: Thirty-two deaths over 18 months in a neonatal unit were retrospectively analyzed. RESULTS: Twenty-four deaths (75%) were attributable to withholding or withdrawing of treatment. In 7 of these cases (29%), the decisions were based on quality-of-life considerations, mostly predicted suffering and expected hospital dependency. For the majority of paediatricians, end-of-life decision making was not influenced by legal or economic considerations or by considerations regarding availability of supportive care after discharge. CONCLUSION: Our study suggests that physician end-of-life decision making in this unit in a less developed health care setting is found to be similar to that in developed health care settings and is independent of availability of supportive care after discharge for infants with disabilities.     

Withholding and withdrawing treatment in pediatric intensive care. Update of the GFRUP recommendations

In 2005, the French-speaking task force on pediatric critical and emergency care [Groupe Francophone de Réanimation et d’Urgences Pédiatriques (GFRUP)] issued recommendations on withholding and withdrawing treatments in pediatric critical care. Since then, the French Public Health Code, modified by the laws passed in 2005 and 2016 and by their enactment decrees, has established a legal framework for practice. Now, 15 years later, an update of these recommendations was needed to factor in the experience acquired by healthcare teams, new questions raised by practice surveys, the recommendations issued in the interval, the changes in legislation, and a few legal precedents. The objective of this article is to help pediatric critical care teams find the closest possible compromise between the ethical principles guiding the care offered to the child and the family and compliance with current regulations and laws.     

How do hospitalised children die? The context of death and end-of-life decision-making

Aim

The decrease in childhood mortality, the growing clinical complexity and the greater technification of intensive care units have changed the circumstances of death of paediatric patients. The aim of this study is to describe the context of death and end-of-life decision-making.

Methods

Single-centre, retrospective, observational study of deaths in inpatients or home hospitalised children under 18 years old between 2011 and 2021. Demographic data, pathological history and circumstances of death were obtained from the medical record. The whole study period was divided into two halves for the analysis of the temporal trends.

Results

A total of 358 patients died, 63.2% under the age of 1 year old; 86.9% had underlying life-limiting illnesses and 73.2% died in the intensive care unit, with no differences between the two time periods. Death at home was significantly higher in the second study period (3.8% vs. 9%). A total of 20.1% died during advanced cardiopulmonary resuscitation. Life-sustaining treatment was withheld or withdrawn in 53.6%, with no differences between the time courses. Life-sustaining treatment was withheld mainly in patients with neurological, metabolic and oncological conditions, and less frequently in patients with cardiovascular or respiratory diseases or who were previously healthy. Most patients coded as palliative care (PC) or followed up by PC teams had an advance care plan (ACP) recorded, while in the others it was infrequent. PC coding, following by PC teams and ACP recording increased in the last years of the study.

Conclusions

Death of children in our setting usually occurs in relation to complex underlying pathology and after the decision of withdrawing or withholding life-sustaining treatment. In this context, PC and ACP acquire greater importance. In our study, PC involvement resulted in better documentation of ACP and PC coding.     

Withholding and withdrawing neonatal intensive care

Decisions relating to the withholding, limiting or withdrawal of intensive care support are a necessary part of a neonatal unit's practice.Health professionals and parents have a duty to act in partnership in the infant's best interests. Clinical guidelines and the law help define circumstances when it is ethically and legally acceptable to consider withholding or withdrawing treatment. Good practice dictates that a consensus should be achieved both between unit staff themselves and with parents. Senior staff involvement and effective, timely communication is essential to achieve this and only rarely will the law need to be involved. An honest, consistent approach is essential and discussions must be carefully documented. Parents need to be provided with sufficient information in a way that they can understand and assimilate, and most parents wish to be involved in both the decision-making and the dying process; ways of achieving this are discussed.Follow-up is important. Primary healthcare professionals need to be involved early in the process and contact should be established by someone from the unit well known to the parents within 2 months of the death of their child.     

Paediatric palliative care: distinctive needs and emerging issues

Palliative medicine has developed as a specialized field of practice in recent decades but the focus has been very much on older adults with incurable malignancies. The needs of dying children have not been addressed adequately and the question of who is best placed to provide care to this group remains the subject of some contention. Although the principles of palliative care apply equally to children, a number of fundamental differences influence their application in the paediatric setting. These include a heterogeneous patient population, physiological factors, developmental issues, parental involvement in care giving and decision making and the desire of most paediatricians to maintain close involvement with their patients. Families generally prefer home care and even quite severe symptoms can be managed in this environment with appropriate planning, expertise and support. The delivery of effective palliative care in the paediatric setting is contingent upon overcoming barriers between hospital and community and sharing expertise between paediatricians and palliative care physicians. Research is also required to increase the evidence base for practice.     

Legal basis for ethical withholding and withdrawing life-sustaining medical treatment from infants and children

Withholding and withdrawing life-sustaining medical treatment is common in hospitals, particularly in intensive care unit environments. Usually, decisions regarding limitation of therapy are based on ethical considerations and derived by discussion and mutual agreement between parents and clinicians. However, disputes sometimes arise. When such disputes are settled in court, the judgements constitute common law and may serve as the basis for ethical decisions. All cases have been decided in the 'best interests' of the unfortunate child. Although each case has its own circumstances, a composite view reveals three legal criteria for withholding or withdrawing treatment. These are based on the present and future 'quality of life', 'futility' of present treatment and a comparison of 'burdens versus benefits' of present and future treatment and its discontinuance. These legal principles may facilitate difficult ethical decisions. This article identifies a number of common law cases which establishes these principles.     

Ethical issues in the daily medical care of children

The main ethical imperative of all paediatric actions is the demand to do everything “in the best interests of children”. Relevant guidelines can be derived from the UN Declaration on the Rights of Children, whereupon every child has the fundamental right to life and dignity, and is entitled to optimal medical care. Paediatric care in general includes the responsibility to achieve the highest level of knowledge, consideration of the child-specific somatic, mental and social development, empathic and trustworthy communication with the child and parents, observance of the recommendations of the Charter of the Rights of Children in Hospital, and cooperation with experts in related professions. Good communication is based on respect for the dignity of the child as a person and on the use of child-specific language, recognizing the rights of the child to be involved in consent or assent. Good clinical practice dictates and demands high standards of practice in therapeutics, research and medical interventions involving children. Decision making in extreme situations with regard to continuation, withholding or withdrawing life supporting measures is amongst the most complex and ethically difficult tasks of a doctor. Ethical issues with regard to neglect, maltreatment, abuse and addictions involving children need scrupulous consideration. Paediatricians have a prime responsibility to promote and protect the well being of children. Members of Ethics Working Group are P. Crawley (Belgium), D. Gill (Ireland), M. LoGiudice (Italy), S. Grosek (Slovenia), R. Kurz (Austria), S. Mjones (Sweden), A. Costa (Portugal)     

End-of-life decisions in delivery room and neonatal intensive care unit

Background: The increase in neonatal survival in recent decades has been followed by an increase in later disabilities. This has given rise to many new ethical issues. In different countries, efforts are being made to define ethical guidelines regarding withholding or withdrawing intensive care and end-of-life decisions in critically ill newborn infants. These guidelines have to be differentiated from ethical decision-making models which structure the process of decision making for an individual child. Such a framework has been in existence in our clinic for 10 years. Aim: The aims of this study were to evaluate how end-of-life decisions are taken in our perinatal centre and to analyse whether these decisions are consistent with our framework for structured ethical decision making. Methods: 199 consecutive neonatal deaths over 5 y were evaluated. Results: In 157 cases (79%), end-of-life decisions were taken according to our ethical framework; in the remaining 42 cases (21%), the baby died before this could be done. In 92% of cases, parents were involved in the decision and, in all cases but one, agreed with the decision. A patient's life was never intentionally and actively terminated.

Conclusion: In contrast to earlier years, in-hospital death in our clinic is nowadays usually preceded by structured and documented medical end-of-life decisions.     

The future of primary paediatric care in Europe: reflections and Report of the EPA/UNEPSA Committee

Background:  Changes in the scope of the field of paediatrics and the variability in primary paediatric care (PPC) and practice throughout Europe motivated the European Paediatric Association and Union of National European Paediatric Societies and Associations (EPA/UNEPSA) to establish a working group to discuss definitions of paediatric coverage in terms of age limits, find common denominators in the provision of PPC and examine the challenges and goals of 21st century paediatrics relevant to the continent. These issues were presented at the 2008 Europaediatrics in Istanbul, where a consensus declaration was drawn up and accepted by the EPA/UNEPSA Executive Committee.
Aim:  To present an outline of the essential elements of the 2008 EPA/UNEPSA Executive Committee consensus declaration.
Conclusion:  The definition of basic characteristics and the establishment of requirements for optimal PPC and practice are important steps in overcoming the differences among European countries and pave the way for an acceptable formulation of standardized high-quality paediatric medical care in Europe.     

Improved neonatal survival and outcomes at borderline viability brings increasing ethical dilemmas

With improvements in neonatal intensive care over the past five decades, the limits of viability have reduced to around 24 weeks' gestation. While increasing survival has been the predominant driver leading to lowering the gestation at which care can be provided, these infants remain at significant risk of adverse long-term outcomes including neuro-developmental disability. Decisions about commencing and continuing intensive care are determined in partnership with parents, considering the best interests of the baby and the family. Occasionally, clinicians and parents come to an impasse regarding institution or continuation of intensive care. Inevitably, these ethical dilemmas need to consider the uncertainty of the long-term prognosis and challenges surrounding providing or withdrawing active treatment. Further reduction in the gestational age considered for institution of intensive care will need to be guided by short- and long-term outcomes, community expectations and the availability of sufficient resources to care for these infants in the neonatal intensive care unit and beyond.     

Discussing withholding and withdrawing of life-sustaining medical treatment in paediatric inpatients: audit of current practice

Aim:   To understand the circumstances of inpatient deaths at a tertiary paediatric hospital and current practices regarding the timing and documentation of discussions concerning the withholding and withdrawing of life-sustaining medical treatment (WWLSMT).
Methods:   Retrospective review of the medical records of 50 consecutive inpatient deaths.
Results:   In total, 84% of inpatient deaths occurred in an intensive care setting. In all, 74% of patients had an underlying life-limiting or life-threatening condition and death was documented as having been expected in the short term in 88% of patients. Life-sustaining treatment was either withdrawn or limited prior to death in 84% of cases. There was documented family involvement in the decision-making process in 98% of cases. A total of 83% of discussions first took place on the day of death itself or in the week leading up to the child's death. Although medical staff frequently documented the outcome of these discussions, the content, clarity and accessibility of documentation varied widely.
Conclusions:   The majority of inpatient deaths at The Royal Children's Hospital occur in acute circumstances and involve patients with chronic conditions. In most cases, death follows WWLSMT. Discussions with families are documented as first occurring relatively late in the course of the final admission although opportunities for earlier discussions may exist. Further research is needed to understand more about how and when discussions actually take place, what the barriers to communication are and to what extent opportunities exist for discussions to be initiated earlier in the illness course.     

A cross-Canada survey of clinical programs for the care of survivors of cancer in childhood and adolescence

BACKGROUND

More than 80% of children who have been recently diagnosed with cancer will survive for five years or more. A majority of these survivors are at risk for developing one or more long-term sequelae of their therapy. Thus, they all require specialized medical care that is focused on their specific risks.

METHODS

A survey of informants from all 17 paediatric cancer programs in Canada was conducted to determine the care offered to survivors of childhood cancer, both during their paediatric and adolescent years, as well as after they transition to adulthood.

RESULTS

Sixteen informants representing all 17 centres responded to the survey by telephone or e-mail. Twelve of the 17 centres (71%) had a formal program or clinic dedicated to the care of survivors during their paediatric and adolescent years, while the remaining centres cared for survivors in their acute care oncology clinics. However, only six of 17 centres (35%) had access to a formal program for survivors once they reach adulthood. Fifteen of the 17 centres (88%) adhered to published long-term follow-up guidelines, and 13 of 17 centres (76%) provided a treatment summary and/or a survivorship care plan to each survivor before their transfer out of paediatric care.

CONCLUSION

Despite the centralization of paediatric oncology care within 17 specialist centres and the availability of universal health care, many Canadian survivors of childhood cancer do not have access to clinics specializing in long-term risk-based survivor care, and this access further decreases once they reach adulthood.     

End-of-life issues in the paediatric intensive care unit

Recent changes in paediatrics with the growing provision of life-sustaining interventions in both complex and rare diseases have increased the prevalence of chronic and life-limiting conditions in children. This has, in turn, led to changes in the population of children cared for and, consequently, the modes of death in paediatric intensive care units. In many countries, children with chronic conditions now constitute a large proportion of both admissions to paediatric intensive care units and the deaths occurring there. Managing end-of-life decisions and care is an integral part of practice and constitutes an imperative skill for all professionals working in paediatric intensive care. The process of end-of-life care involves many uncertainties and ethical, legal, religious, cultural and social considerations. A child's death will always be a tragic and challenging experience, but the way it is managed can influence the impact it has on everyone involved. This article provides a review of the issues surrounding the end-of-life process for patients in paediatric intensive care units and explores the challenges and considerations involved in decision-making to withhold or withdraw life-sustaining therapy. We discuss the practicalities of managing and optimising end-of-life care within and beyond the paediatric intensive care unit and the different aspects that healthcare teams need to address before and after a child's death.     

The legal framework for end-of-life decisions in the UK

We have reviewed the current UK guidance regarding withholding and withdrawing life-prolonging treatment in the infant and termination of pregnancy for fetal malformation. We provide summaries of the key cases. The framework provided by professional bodies and the law in this difficult area stresses the importance of good and frequent communication between different professional groups and parents with early recourse to second opinions if a difference of view emerges. Legal proceedings should be used only as a last resort.