What influences parents' decisions to limit or withdraw life support?

OBJECTIVE: Decisions to forgo life support from critically ill children are commonly faced by parents and physicians. Previous research regarding parents' perspectives on the decision-making process has been limited by retrospective methods and the use of closed-ended questionnaires. We prospectively identified and described parents' self-reported influences on decisions to forgo life support from their children. Deeper understanding of parents' views will allow physicians to focus end-of-life discussions on factors important to parents and help resolve conflicts. DESIGN: Prospective, qualitative pilot study. SETTING: Pediatric intensive care unit of a university-affiliated children's hospital. PARTICIPANTS: A total of 14 parents of ten children whose pediatric intensive care unit physician had made a recommendation to limit or withdraw life support. INTERVENTIONS:: In-depth, semistructured interviews were conducted with parents during their decision-making process. MEASUREMENTS AND MAIN RESULTS: Factors influencing the parents in this study in their decision to forgo life support included their previous experience with death and end-of-life decision making for others, their personal observations of their child's suffering, their perceptions of their child's will to survive, their need to protect and advocate for their child, and the family's financial resources and concerns regarding life-long care. Parents in this study expressed the desire to do what is best for their child but struggled with feelings of selfishness, guilt, and the need to avoid agony and sorrow. Physician recommendations, review of options, and joint formulation of a plan helped parents gain a sense of control over their situation. Parents of eight children agreed to forgo life support and parents of two did not. CONCLUSIONS: Prospective interviews with open-ended questions identified factors influencing parents' decision making not previously described in the critical care literature such as parents' past experiences with end-of-life decisions and their anticipated emotional adjustments and future resources. Inclusion of these factors into discussions is important to parents and may facilitate decisions regarding the limitation or withdrawal of life support.     

Decisions about life‐sustaining measures in children: in whose best interests?

As the community of physicians and nurses dedicated to the care of critically ill children has gained ever more well-developed skill sets, the decision to either continue or forego life-sustaining measures has become less time-sensitive. As a result, there is greater opportunity for careful consideration and discussion. The core principle in making decisions about whether to continue or forego life-sustaining measures is the best interests of the child. However, there are many clinical situations wherein factors other than the child's best interests may influence treatment decisions. The present report seeks to examine the notion that in the arena of paediatric critical care medicine, the decision-making process regarding life-sustaining measures may place insufficient priority upon the child's best interests. We examine actual, de-identified clinical situations, encountered in the critical care arena in two categories: (i) cases that challenge the imperative to act in the child's best interests, and (ii) cases that compromise the ability of parents and caregivers to use child-centred, best-interests approaches to decision-making. Clarity surrounding the implications of a clinical decision for the patient is essential. Decisions that are not focused squarely on the child's best interests may compromise the delivery of optimally ethical end-of-life care. CONCLUSION: The cases and analysis may benefit parents and caregivers as they struggle with the difficult ethical issues that accompany decisions to continue or forego life-sustaining measures in children.     

Considering complementary and alternative medicine alternatives in cases of life-threatening illness: applying the best-interests test

In this article we explore decision-making about treatment when a child faces a life-threatening illness but conventional treatment presents substantial risk and uncertain benefit. When is it acceptable for parents to decide to use complementary and alternative medicine as an alternative, rather than a complement, to conventional care? We use the example of a young child suffering from progressive glycogen storage disease, for whom liver transplant offers the only prospect of a cure. Without a liver transplant, the disease usually results in death within a few years. However, experience using transplant to treat this illness has been limited, success is far from ensured, and the risks (including death and continued progression of the disease) are substantial. The child's parents, who are first-generation immigrants, consider the risks of the transplant unjustified because it still does not offer good prospects for a healthy future. They believe that traditional Chinese medicine could help remediate their daughter's disease. In the article we (1) review parents' obligation to make treatment decisions in the best interests of their child, (2) explain limits on parents' decision-making authority, (3) explore how "best interests" are determined, focusing on cases of serious illness for which conventional treatment is risky and benefit is possible but uncertain, (4) explain the standard of care that physicians must meet in advising about treatment, and (5) outline factors that clinicians and parents should take into account when making decisions.     

Parents' perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer

BACKGROUND: In the present study, we investigated the situation of children who had succumbed to their malignancy in Germany as perceived by their parents. Specifically, we were interested in bereaved parents' perspective on five essential areas: 1) symptoms and quality of life, 2) characteristics of the child's death, 3) anticipation of their child's death and care delivery, 4) end-of-life decisions and 5) impact of the child's death on the parents and perceived social support by the health care team. MATERIALS AND METHODS: We contacted all existing departments for paediatric oncology in the German federal state of Nordrhein Westfalen and asked them to contact all parents for participation in our study who had lost their child to cancer in 1999 and 2000. Upon agreement, we interviewed the parents utilising a validated semi-structured interview on distressing symptoms and quality of life of their children during the end-of-life care period. RESULTS: Six of the 19 departments agreed to participate. Parents of 48 children (31 boys, 17 girls) were interviewed. The main distressing symptoms were fatigue, pain, loss of appetite, and dyspnoea according to the parents. While parents perceived pain and constipation to have been treated successfully, loss of appetite and anxiety were not treated effectively. 75% of the children died due to a progression of their malignancy. Of these, 50% obtained cancer-directed therapy at the end of life, which was negatively rated by the parents in hindsight. 48% of the children died at home even though 88% of the parents chose 'at home' as the most appropriate locale of death in hindsight. Parents anticipated their child's death on average 9 weeks prior to the child's death. 41% of the parents provided palliative home care for their child and the majority (88%) rated the quality of care as good or very good. 64% discussed end-of-life decisions with the health care team, 36% did not have a discussion. Parents were clearly affected by their child's death. However, 15% of the parents were not contacted by the health care team following the child's death. CONCLUSIONS: The present study demonstrated that psychological symptoms (e.g. anxiety) are frequent symptoms in the end-of-life care period and cause severe suffering in the children. Questions in terms of benefits and costs of cancer-directed therapy in the end-of-life care period need to be addressed in future prospective studies. Parents' perspective on their child's death and related end-of-life decisions highlighted the importance of communication between parents and the health care team. Future studies need to investigate potential barriers in the communication between parents and the team to optimise end-of-life decisions and hence, reduce parents' long-term distress. In line with the previous, the present data demonstrated that there is still a lack of routine contact from the health care team following the child's death despite existing guidelines. Research is therefore needed into the implementation of guidelines for routine contact into clinical practice following a child's death.     

Addressing ethical issues in everyday practice

In primary-care practice, just as in critical care, ethical dilemmas challenge pediatricians to make choices in the best interests of their patients. Parents are important to the growth and development of children and have broad responsibility for making virtually all decisions regarding nutrition, clothing, housing, education, religion, and medical care. Society's deference to parental choice promotes the value of family integrity, ensures the availability of an identifiable decision maker, and acknowledges the legitimate role parents play in shaping their child's development. However, pediatricians have obligations to assess and advocate for the best interests of their patients. This requires that physicians reach out to their patients and take the time to listen to children and to involve them in their own care. The proper role of a child in planning care depends less on chronologic age than on developmental and personal capacity. Even young children have a keen awareness of their own clinical situations and options and should be involved as best as is possible in decision making. All decision making for children should be collaborative among patients, parents, and professionals. A situation including an involved child, an informed parent, and a caring and compassionate caregiver working collaboratively is most likely to result in optimal decisions for pediatric patients. Bartholome concluded in 1995 that pediatricians should respect children for the persons they are in the process of becoming by being willing to assist them to participate to the extent of their capacity in making decisions about their health. Combining that view with fostering respect for the strongly held beliefs and values of parents is the direction pediatricians should travel to make decisions in the best interests of children.     

Infants of borderline viability: ethical and clinical considerations

The burden of prolonged intensive care for infants of borderline viability and the relatively high disability rate among survivors pose ethical and clinical problems. Bioethicists have argued that clinical decisions should be based on the infant's 'best interests', balancing the burden of intensive care including 'pain and suffering' against the likely outcome. However, there are so many uncertainties that the 'best interest' argument is more helpful in defining problems than driving clinical solutions. The parents' interests are inextricably linked with those of their infant and have considerable weight. Parental complaints about delivery room care are rarely based on a conflict of ethical opinion. They are more likely due to misunderstanding, confusion and tension among staff and parents as a result of a failure to have in place or to implement agreed protocols. Information given during pre-delivery counselling can easily be misunderstood. The condition of the infant at birth and response to bag and mask ventilation have an important role in influencing whether to continue intensive care. Subsequent care in the neonatal intensive care unit (NICU) should be considered as a 'trial of life', with the option of withdrawing ventilatory assistance according to the nature and extent of neonatal complications.     

Intensive care for very low birthweight infants in South Africa: a survey of physician attitudes, parent counseling and resuscitation practices

Improving outcomes have promoted utilization of intensive care for premature infants in developing countries with available fiscal and technological resources. Physician counseling and decision-making have not been characterized where economic restrictions, governmental guidelines, and physician cultural attitudes may influence decisions about the appropriateness of neonatal intensive care. A cross-sectional survey of all neonatologists and pediatricians providing neonatal care in public and private hospitals in South Africa (n=394) was carried out. Physicians returned 93 surveys (24 per cent response rate). Frequency of counseling increased with increasing gestational age (GA) but was not universally provided at any GA. Morbidity and mortality were consistently discussed and fiscal considerations frequently discussed when antenatal counseling occurred. Resuscitation thresholds were 25-26 weeks and 665-685 g, and were higher in public than in private hospitals. Decisions to limit resuscitation were based more on expected outcome than on patients' wishes or economics. At 24-25 weeks, 91 per cent of physicians would not resuscitate despite parents' wishes; 93 per cent of physicians would resuscitate 28-29-week-old infants over parents' refusal. Parents expecting premature infants are not invariably counseled. In making life-support decisions, physicians consider infants' best interests and, less frequently, financial and emotional burdens. Thresholds for resuscitation and intensive care are higher in public hospitals, and higher than in developed countries. Physicians relegate parents to a passive role in life-support decisions.     

Quality of care at the end of life in children with cancer

Aim:   Current Australian guidelines for the provision of paediatric palliative care highlight the importance of services being focused on the needs of the child and family. We aimed to establish parents' level of satisfaction with the quality of care currently being provided to children dying of cancer.
Methods:   We interviewed 96 parents of children who died of cancer in Melbourne, Australia between 1996 and 2004 to ascertain how they rated the care provided to their child during the end-of-life period.
Results:   A majority of parents were satisfied with the care provided by their primary oncologist, local doctors, palliative care services and home-care nurses. Most parents felt that discussions about key medical and treatment decisions were appropriate and clearly understood. Parents were generally satisfied with the leadership roles undertaken in decision-making in the end-of-life period; however, parents who were not satisfied indicated that they would like additional involvement of their primary oncologist.
Conclusions:   Current approaches to end-of-life care in children with cancer appear to be satisfactory. The main focus should continue to be on open and honest communication.     

Relationship of neonatologists' end-of-life decisions to their personal fear of death

OBJECTIVE: To study the relationship of Australian and New Zealand (ANZ) neonatologists' personal fear of death to their forgoing life-sustaining treatment and hastening death in newborns destined for severe disability and newborns for whom further treatment is considered non-beneficial or overly burdensome. DESIGN: A self-report questionnaire survey of ANZ neonatologists. SETTING: Neonatologists registered in the 2004 ANZ Directory of Neonatal Intensive Care Units. PARTICIPANTS: 78 of 138 (56%) neonatologists who responded to the study questionnaire. MAIN OUTCOME MEASURES: Between-group differences in the Multidimensional Fear of Death Scale. RESULTS: In newborns for whom further treatment was deemed futile, 73 neonatologists reported their attitude to hastening death as follows: 23 preferred to hasten death by withdrawing minimal treatment, 35 preferred to hasten death with analgesia-sedation, and 15 reported that hastening death was unacceptable. Analysis of variance showed a statistically significant difference between the three groups regarding fear of the dying process (F = 3.78, p = 0.028), fear of premature death (F = 3.28, p = 0.044) and fear of being destroyed (F = 3.20, p = 0.047). Post hoc comparisons showed that neonatologists who reported that hastening death was unacceptable compared with neonatologists who preferred to hasten death with analgesia-sedation had significantly less fear of the dying process and fear of premature death, and significantly more fear of being destroyed. CONCLUSIONS: ANZ neonatologists' personal fear of death and their attitude to hastening death when further treatment is considered futile are significantly related. Neonatologists' fear of death may influence their end-of-life decisions.     

Parents and professionals in the NICU: communication within the context of ethical decision making--an integrative review

Communication between parents and professionals in the NICU is a necessary part of collaborative decision making in the provision of family-centered care. Decisions with ethical components, those regarding treatment plans or neonatal research enrollment, need to be made conjointly with parents and health care professionals. This article reviews the present state of knowledge of how parents' input can be facilitated in regard to decisions made about their children. Research studies involving decisions made with ethical components in the NICU since the advent of the Baby Doe regulations reveal parents' frustration with communication practices, their need for control of information, and the trust in their children's health care providers that is required to best facilitate their input into ethical decisions made about their children.     

Parental decision-making for the varicella vaccine.

INTRODUCTION: With the advent of new vaccines, improvements in established vaccines, and the availability of new combination vaccines, parents' decisions about vaccinating their children have become more complicated. This study examined parents' decision-making processes pertaining to whether to have their children vaccinated for varicella to gain a better understanding about how parents make vaccination decisions for their children. The "Awareness-to-Action Model" was used to examine parents' decision-making process before the action to vaccinate or refuse vaccination occurs. METHOD: This study used a cross-sectional design and logistic regression to test the explanatory power of several factors related to the parental decision-making process. A stratified random sample of 262 members of Kaiser Permanente Hawaii participated in the study. Data were collected through telephone interviews. RESULTS: In the "Awareness-to-Action Model," the decision construct was statistically significant in explaining parents' decisions to have their child vaccinated. The overall model correctly classified 80% of the sample as accepters or nonaccepters of the vaccination for their child. This study provides a model that enables health care providers to understand parental decisions about vaccines. This knowledge can help target interventions to increase vaccine compliance, thus minimizing the risk of diseases preventable by vaccine.     

Nordic children with myelomeningocele. Parents' assessments of the handicap and physicians' classifications of the disabilities

The differences between parents' assessments of their child's handicap and professionals' assessment of disabilities were studied in 486 Nordic children with myelomeningocele aged 4–18 years. Although disability and handicap are conceptually different, agreement between the parents' assessments of the handicap and the degree of disability according to Lorber's classification was found in 51% of cases. The parents' assessments showed close agreement with overall disability according to Lagergren's method in 45% of cases. The factors most strongly associated with parental assessment of the handicap were the child's motor disability, intellectual functioning, faecal and urinary incontinence and the parents' inclination to feel inadequate with respect to the child's needs. Data from professional assessment of disabilities alone are of limited value in understanding the impact of disabilities on the daily life of a child.     

Beginning the transition to adulthood: the experiences of six families with youths with cerebral palsy

This qualitative study focused on the experiences of six 20- to 23-year-old persons with cerebral palsy and their parents during the transition to adulthood and explored perceived changes in their relationship. Using semi-structured interviews, three interrelated themes emerged: (a) perceptions of readiness for increased autonomy, (b) opportunities for the young adults to make independent decisions and learn from life experiences, and (c) shifting parental roles. The youths' autonomy related to parental perceptions of their readiness and push for autonomy, the parent's personal beliefs and readiness to support the changing relationship, and the parents' needs for separation from the child. In some families of youths requiring ongoing support for personal care, finances were a barrier to altering relationships with their child.     

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 role of the courts in clinical decision making.

With advances in medical technology more can be offered with respect to treatment, for example, in neonates born prematurely. This raises the public's expectations of what medical professionals can offer and puts healthcare professionals under pressure to continue treatment, which may ultimately be futile. The courts may be asked to intervene in those cases where there is disagreement between parents and healthcare professionals. This may occur where doctors refuse to instigate or continue futile treatments or where treatment is not felt to be in the best interests of the patient. Cases may also be referred to the courts where doctors feel treatment options do exist but those with parental responsibility refuse to consent. Disagreement may also occur between parents. The best interests of the child are paramount and their welfare should always be the primary consideration. However, the court's opinion will be increasingly sought as parents' expectations increase and doctors fear litigation if they act against the parents' wishes. This paper reviews the role of the courts, using a number of high profile cases as examples. While the courts generally support the views of the healthcare professional, this cannot be guaranteed.     

The role of the courts in clinical decision making

With advances in medical technology more can be offered with respect to treatment, for example, in neonates born prematurely. This raises the public's expectations of what medical professionals can offer and puts healthcare professionals under pressure to continue treatment, which may ultimately be futile. The courts may be asked to intervene in those cases where there is disagreement between parents and healthcare professionals. This may occur where doctors refuse to instigate or continue futile treatments or where treatment is not felt to be in the best interests of the patient. Cases may also be referred to the courts where doctors feel treatment options do exist but those with parental responsibility refuse to consent. Disagreement may also occur between parents. The best interests of the child are paramount and their welfare should always be the primary consideration. However, the court's opinion will be increasingly sought as parents' expectations increase and doctors fear litigation if they act against the parents' wishes. This paper reviews the role of the courts, using a number of high profile cases as examples. While the courts generally support the views of the healthcare professional, this cannot be guaranteed.     

Parental involvement in treatment decisions regarding their critically ill child: a comparative study of France and Quebec.

OBJECTIVE: To examine whether physicians or parents assume responsibility for treatment decisions for critically ill children and how this relates to subsequent parental experience. A significant controversy has emerged regarding the role of parents, relative to physicians, in relation to treatment decisions for critically ill children. Anglo-American settings have adopted decision-making models where parents are regarded as responsible for such life-support decisions, while in France physicians are commonly considered the decision makers. DESIGN: Grounded theory qualitative methodology. SETTING: Four pediatric intensive care units (two in France and two in Quebec, Canada). PATIENTS: Thirty-one parents of critically ill children; nine physicians and 13 nurses who cared for their children. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Semistructured interviews were conducted. In France, physicians were predominantly the decision makers for treatment decisions. In Quebec, decisional authority practices were more varied; parents were the most common decision maker, but sometimes it was physicians, while for some decisional responsibility depended on the type of decision to be made. French parents appeared more satisfied with their communication and relationship experiences than Quebec parents. French parents referred primarily to the importance of the quality of communication rather than decisional authority. There was no relationship between parents' actual responsibility for decisions and their subsequent guilt experience. CONCLUSIONS: It was remarkable that a certain degree of medical paternalism was unavoidable, regardless of the legal and ethical norms that were in place. This may not necessarily harm parents' moral experiences. Further research is required to examine parental decisional experience in other pediatric settings.     

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.     

Intercontinental differences in end-of-life attitudes in the pediatric intensive care unit: results of a worldwide survey

OBJECTIVE: To examine intercontinental differences in end-of-life practices in pediatric intensive care units. DESIGN: An international survey. The on-line questionnaire consisted of two case scenarios with five questions each. The scenarios described the management of children in pediatric intensive care units and the questions dealt with the decision-making process and the modalities of forgoing life support. SETTING: The participants at the 5th World Congress on Pediatric Critical Care Medicine organized by the World Federation of Pediatric Intensive and Critical Care Societies (June 2007, Geneva, Switzerland) were invited to participate. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Six hundred sixty seven complete questionnaires were received from 71 countries, which were grouped into six continents: Europe (52.7%), North America (17.9%) and South America (9.5%), Asia (7.6%), Australia (6%), and Middle East (4.3%). In both scenarios, physicians played the major role in decision making in all of the continents. However, parents from North America, Australia, the Middle East, and Asia seem to be more involved in the decision-making process, compared with those from Europe and South America. In cases of septic shock, caregivers from Europe and South America are more prone to forego life support despite parents' wishes. In North America and Australia, parents' presence during cardiopulmonary resuscitation is usually accepted (89.7% and 92.3%, respectively), whereas their presence is less accepted in Asia (54%) and Europe (54.8%), or much less accepted in South America (25.8%) and the Middle East (7.1%). In both scenarios, the option to withhold rather than withdraw life supports was more commonly chosen among all continents, except South America, where the withdrawal of life support was more often proposed (51.6% vs. 45.2%). CONCLUSIONS: This study confirms that important intercontinental differences exist toward end-of-life issues in pediatric intensive care. Although the legal and ethical situation is rapidly evolving, a certain degree of paternalism seems to persist among European and South-American caregivers. This study suggests that ethical principles depend on the cultural roots of countries or continents, emphasizing the need to foster dialogue on end-of-life issues around the world to learn from each other and improve end-of-life care in pediatric intensive care units.