Let's Talk About It: Supporting Family Communication during End-of-Life Care of Pediatric Patients

Abstract

Background:

Communication is key in optimizing medical care when a child is approaching end of life (EOL). Research is yet to establish best practices for how medical teams can guide intrafamily communication (including surviving siblings) when EOL care is underway or anticipated for a pediatric patient. While recommendations regarding how medical teams can facilitate communication between the medical team and the family exist, various barriers may prevent the implementation of these recommendations.

Objective:

This review aims to provide a summary of research-to-date on family and medical provider perceptions of communication during pediatric EOL care.

Design:

Systematic review.

Results:

Findings from a review of 65 studies suggest that when a child enters EOL care, many parents try to protect their child and/or themselves by avoiding discussions about death. Despite current recommendations, medical teams often refrain from discussing EOL care with pediatric patients until death is imminent for a variety of reasons (e.g., family factors and discomfort with EOL conversations). Parents consistently report a need for honest complete information, delivered with sensitivity. Pediatric patients often report a preference to be informed of their prognosis, and siblings express a desire to be involved in EOL discussions.

Conclusions:

Families may benefit from enhanced communication around EOL planning, both within the family and between the family and medical team. Future research should investigate a potential role for medical teams in supporting intrafamily communication about EOL challenges and should examine how communication between medical teams and families can be facilitated as EOL approaches.

Introduction

Approximately 42,000 children die each year in the United States.¹ Each day 5000 children with chronic childhood conditions are within the last six months of their lives.² Many of these children experience physical stressors, including recurrent hospital visits and pain,³ as well as emotional stressors, such as fears of being alone or replaced.⁴ Parents of children who are facing a life-threatening illness report psychosocial distress, including financial concerns,⁵ post-traumatic stress symptoms,⁶ and strains on relationships.⁵ Siblings of children facing life-threatening illnesses also report post-traumatic stress symptoms, negative emotional reactions (e.g., fear, helplessness, and anger), and a lower quality of life.⁷

It is widely accepted that communication is a key component of optimizing medical care when a child is approaching end of life (EOL).^8,9 Ideally, when a child is faced with a terminal diagnosis and/or enters EOL care, his or her medical team takes a pediatric palliative care (PPC) approach, either integrating a palliative team or providing PPC themselves if a team is not available.^10,11 PPC encompasses a child- and family-centered approach to care with a goal of enhancing quality of life by ensuring that EOL medical care is congruent to the family's physical, emotional, and spiritual values.¹¹

PPC facilitates communication between medical teams and families by addressing the goals and needs of the child and family.^8,9 Benefits of effective communication have been demonstrated into the bereavement period. For example, higher parental ratings on communication have been associated with lower levels of long-term parental grief.¹² Many challenges may affect a family's ability to communicate with each other and with the medical team. For example, medical professionals may not know how to breach the subject of death and may avoid the topic to protect child, parents, and surviving siblings from distress.¹³

Currently, research on intrafamily communication regarding pediatric EOL is in its infancy. Similarly, very little research is available on pediatric patient perspectives on communication with medical providers. To our knowledge, no review currently brings together the numerous small studies (majority include <100 participants) that have reported on parent perception of medical provider communication at EOL or medical providers' perception on communication with families. Thus, the purpose of this systematic review is to summarize current research on how families communicate with each other and with the medical team when a child requires EOL care with a goal of informing clinical practice and highlighting avenues for future research.

Method

Search strategy

A search of PubMed, Medline, and PsycINFO between January 1, 2000 and September 1, 2017 was performed using the following search terms: “terminal care,” “end-of-life care,” “palliative care,” “pediatric,” “child,” “parent,” “family,” and “communication.” For those studies that met eligibility criteria, reference lists were also reviewed. If a title of an article in a reference list suggested that it could potentially qualify for the current article, the full text of that article was reviewed.

Study selection

Two study authors independently reviewed titles and abstracts of potential studies identified in the initial search to determine which studies were eligible for inclusion in the full text review. Eligibility criteria were defined as the following: the study had to (1) include information on a child currently receiving EOL care/PPC or a child who had received EOL care/PPC before their death, (2) focus on communication within the family or between family and the medical team, (3) be available in the English language, and (4) be published between January 1, 2000 and September 1, 2017. Both qualitative and quantitative research methodologies were included. Intervention studies were excluded.

Results

Characteristics of included studies

The initial search of PubMed, Medline, and PsycINFO yielded 115 results. Overall, findings from 65 studies were included: 9 examined EOL communication within the family, 43 reported on the families' perspective on communication between the family and medical team, and 17 offered perspectives of healthcare providers on communication with families at EOL, with 4 of these studies examining more than one category of communication listed above.^13–16 Figure 1 depicts study design with PRISMA diagram, and Tables 1 –3 show descriptions of studies selected for inclusion.

FIG. 1.

PRISMA diagram for studies of patient, family, and medical team communication during pediatric palliative care (2000–2017).

Table 1.

Summary of Studies Assessing Communication within Families at End of Life

Authors	Location	N	Medical condition of child	Method	Research topic	Summarized results
Communication between caregivers and child (pediatric patients)
Gaab et al.¹³	New Zealand	19 (parents)	Cancer; heart condition; muscular dystrophy; other life-limiting conditions	Qualitative; interview	Parents' rationale for deciding whether or not to discuss death with their child at EOL.	Reasons for discussing death included acknowledging, enabling, and teaching. Reasons for not discussing death included avoiding negative changes in relationships, emotions, and perceptions.
Jalmsell et al.⁷⁷	Sweden	67 (parents)	Cancer	Qualitative; survey	Parents' approach to discussing death with their child.	Conversations about death were often introduced by the child and included indirect communication through narratives, such as fairy tales and movies.
Kars et al.⁷⁸	Netherlands	34 (parents)	Cancer	Qualitative; interviews	Parents' motivations for and against discussing death with child.	Motivations for discussing death included supporting child's needs, fulfilling child's wishes, helping child cope, and facilitating closeness with child.
Kars et al.⁷⁸	Netherlands	34 (parents)	Cancer	Qualitative; interviews		Motivations against discussing death included perception that child did not want to talk about it, belief that the topic was too sensitive, trying not to burden the child, parental perception that the child was coping well without discussing death, lack of confidence as to when to start the discussion, feeling unable to cope with the child's reaction to the discussion, and perceiving the topic as unimportant.
Kreicbergs et al.²¹	Sweden	429 (parents)	Cancer	Quantitative; survey	Parents' decision whether or not to discuss death with their child at EOL.	Thirty-four percent discussed death with their child; 0 regretted decision. Sixty-six percent did not discuss death with their child. Twenty-seven percent regretted decision.
Zelcer et al.⁶⁴	United Kingdom	25 (parents)	Brain tumor	Qualitative; focus group interview	Parents' EOL experience of families with children who have a brain tumor.	Children with brain tumors often experience a loss in their ability to communicate, which parents reported as a barrier to speaking with their child about death.
Communication with surviving siblings
Gaab et al.¹³	New Zealand	19 (parents)	Cancer; heart condition; muscular dystrophy; other life-limiting conditions	Qualitative; interview	Parents' rationale for deciding whether or not to discuss death with surviving siblings.	Reasons for discussing death included acknowledging, enabling, and teaching. Reasons for not discussing death included avoiding negative changes in relationships, emotions, and perceptions.
Gaab et al.²⁰	New Zealand	18 (surviving siblings)	Cancer; heart condition; neuromuscular condition; other life-limiting conditions	Qualitative; interview	Surviving siblings' concerns regarding pediatric palliative care patients.	Surviving siblings were concerned about their siblings' anticipated death and wanted to be involved in EOL care.
Prchal and Landolt¹⁹	Switzerland	7 (surviving siblings)	Cancer	Qualitative; interview	The impact of a child's cancer diagnosis on their sibling's life.	Siblings wanted to be present at the hospital, interact with medical staff, be helpful, and receive illness and prognosis information. Siblings described increased family cohesion despite parental absence, noticed psychological stress in their parents, and wanted to protect their parents emotionally.
Sidhu et al.²⁵	Canada	8 (parents)	Cancer	Qualitative; focus group interview	Parental perceptions of needs and issues that arise for surviving siblings.	Parents stressed the importance of being positive but honest with siblings. 87.5% of parents reported discussing death with the siblings shortly after the initial diagnosis. All parents noted that it was important for hospital staff to communicate information directly to siblings and noted that sibling camps can be helpful.

EOL, end of life.

Table 2.

Studies Assessing Patient and Family Perspectives on Communication between Family and Medical Teams

Authors	Location	N	Medical condition of child	Method	Research topic	Summarized results
Pediatric patient perspectives
Jalmsell et al.⁵⁸	Sweden	10 (children)	Cancer	Qualitative; interview	Children's preferences on how they want physicians to communicate a negative prognosis or potentially fatal outcome.	One hundred percent of children reported that they desired honesty regarding their prognosis, to be informed in a way to maintain hope, and to be told at the same time as their parents.
Madhavan et al.¹⁷	United States	7 (children) with their support network, including caregivers and healthcare providers	Cancer	Qualitative; interview	Needs assessment to identify existing and new uses of health information technology to improve communication in context of palliative care.	Patients and their support networks identified several communication difficulties, including continuity of care and accessibility of providers.
Young et al.¹⁸	United Kingdom	19 (parents); 13 (children/adolescents)	Cancer; brain tumor	Qualitative; interviews	Children and parents' perspectives on communication about pediatric cancer.	Parents reported a desire to protect and appear strong/optimistic to their child. They both facilitated and constrained communication between their child and the medical team. Children described appreciation for some aspects of parent communication, but also wanted more of a voice in the decision-making process with their medical team.
Surviving siblings' perspectives
Nolbris and Hellstrom⁶⁵	Sweden	10 (surviving siblings)	Cancer	Qualitative; interview	Exploration of siblings' needs when a brother or sister dies of cancer.	Many surviving siblings reported feelings of anxiety, distress, and loneliness. Siblings indicated that their distress during the dying process would have been lowered if they had received more support and consistent information about their sibling's condition from medical staff throughout the illness. Siblings also expressed a need to mourn in their own way and the importance of maintaining some normalcy with school and friends.
Caregiver perspectives
Abib et al.²⁷	Brazil	10 (parents)	PICU patients with life-limiting condition	Qualitative; interview	Parents' perception of the quality of EOL care provided to their children.	Parents reported poor quality communication (too much medical terminology), feelings that they were excluded from EOL decision making, and uncompassionate medical staff attitudes.
Brinchmann et al.⁵³	Norway	35 (parents)	Premature and/or critically ill infants	Qualitative; interview	Parental attitudes, preferences, and needs during EOL decision-making processes.	The majority of parents desired a collaborative approach to EOL decision making. While they did not desire full autonomy in the decision to limit or withdraw life-sustaining treatment, parents indicated that timing, physician humility and understanding, and an individualized approach were important.
Brosig et al.⁵⁴	United States	19 (parents)	NICU patients	Qualitative; interview	To identify what parents consider important during EOL care for their infant.	Parents expressed a desire for honest communication, involvement in decision making (especially regarding the withdrawal of life-sustaining medical treatment), validation of their decisions, preparation for the dying process, availability of their physician at the time of death, and contact with the medical team after death.
Caeymaex et al.⁵⁵	France	78 (parents)	NICU patients	Qualitative; interview	EOL care decision-making processes' effects on long-term parental grief.	Long-term grief was decreased in parents who felt involved in the decision to limit or withdraw life-sustaining medical treatment.
Carnevale et al.²²	France; Canada	31 (parents)	Life-limiting conditions	Qualitative; interview	To understand whether parents or physicians are responsible for EOL decisions and the EOL communication process.	Physicians in France were more likely to make EOL decisions without consulting parents than Canadian physicians. Parental desire to be given input on EOL decisions varied, but most emphasized the importance of good communication from the medical staff. Parents in France were more focused on quality communication than on decision making.
Carnevale et al.³¹	Italy	9 (parents)	PICU patients with life-limiting conditions	Qualitative; interview	Exploration of how decisions to limit or end life-sustaining medical treatment for children in the PICU are made and experienced by medical staff and parents.	Parents appreciated clear and full information about their child's condition and prognosis, communication about medical procedures before they were conducted, sensitivity from staff, and staff understanding of parental emotional distress often exacerbated by sleep deprivation. Parents struggled with a lack of sensitivity from physicians, rushed communication, and when information was given to one parent but not the other.
Contro et al.²⁸	United States	68 (family members)	Child death from life-limiting illness	Qualitative; interview	Communication about treatment and prognosis and during the transition to palliative care	Family members reported difficulty with inconsistent and insensitive interactions with medical staff and a lack of communication with Spanish-speaking family members.
Contro et al.¹⁴	United States	68 (family members)	Cancer, cardiac, prematurity, other	Quantitative and qualitative; survey and interview	Assessment of family members' perceptions of the need for a palliative care program.	Families expressed concerns regarding poor communication, including uncaring delivery of bad news and careless remarks made by staff members.
Davies and Connaughty³⁰	United States	45 (parents)	Life-liming conditions	Quantitative and qualitative; survey	Support needed by families of children with life-limiting conditions.	Parents emphasized the importance of the medical staff's ability to effectively communicate prognostic information—only 14% were satisfied with the amount of information they received. The majority of parents also wanted more preparation for what to expect during the dying process. Parents appreciated consistency in care and follow-up contact from staff after their child's death.
Davies et al.²⁹	United States	36 (parents)	Mexican American and Chinese American children with life-limiting conditions	Qualitative; interview	The perceptions of Mexican American and Chinese American parents of medical staff communication during PPC.	Parents who were given little information about their child's condition, prognosis, or treatment experienced feelings of loneliness, frustration, helplessness, anger, and mistrust of medical staff. Physician attention to the family's questions resulted in less anxiety and distress and higher parent satisfaction with quality of care. Language was a significant barrier to communication.
de Vos et al.¹⁵	Netherlands	37 (parents)	Life-limiting conditions	Quantitative and qualitative; recorded conversations	Exploration of parent involvement in decisions to stop life-sustaining medical treatment for pediatric patients.	Although rarely asked to contribute to the decision-making process to end life-sustaining medical treatment (10.5%), most parents attempted to participate by asking questions and expressing their opinions.
Einarsdóttir⁵⁷	Iceland	53 (parents)	Infant with birth weight of <1000 grams	Qualitative; interview	Parental experience of withholding or withdrawing life-sustaining medical treatment for their premature infant, and their interactions with medical staff regarding these decisions.	Nearly all participants agreed that life-sustaining medical treatment should not be withheld from an extremely premature infant without parental consent. Most wanted to be involved in the decision-making process to withdraw life-sustaining medical treatment, but the degree of this involvement varied.
Heller and Solomon²⁶	United States	36 (parents)	Life-limiting conditions	Qualitative; interview	Parent perceptions of continuity and coordination of care during PPC.	Parents valued consistent communication regarding their child's condition and continuity in provider relationships. These relationships helped decrease frustration, hypervigilance, and mistrust and allowed parents to better participate in care.
Hsiao et al.³²	United States	20 (child–parent dyads)	Cancer; heart conditions	Qualitative; interview	Parent and child perceptions of physician communication.	Families noted specific facets of physician communication as helpful, including information exchange, availability, and involvement of child and parent. Harmful communication behaviors, including withholding information, disrespectful or arrogant attitudes, and insensitivity.
Inglin et al.³³	Switzerland	15 (parents)	Cancer; neurological disorders; other life-limiting conditions	Qualitative; interview	The needs and views of parents during EOL care for their child.	Parents' reported a preference for honesty and openness during the delivery of difficult news.
Kassam et al.²⁴	Canada	75 (parents)	Cancer	Quantitative; survey	Comparison of EOL communication between children with cancer who were referred to a palliative care team and those who were not.	Overall, healthcare teams discussed dying with 54% of pediatric patients and provided guidance to parents on discussing death with child for 59% of patients. Families of children referred to a pediatric palliative care (PCC) team were more likely to have conversations with their medical team about death and dying, receive guidance on how to talk to their child about death and dying, and be offered more support for parents and siblings in preparing for EOL.
Kavanaugh et al.¹⁶	United States	4 (parents); 6 (physicians); 2 (nurses)	Extremely premature infants	Qualitative; interview	To understand the EOL decision-making process and needs of parents.	Parents desired encouragement and honest and consistent information from the same provider. Parents reported wanting to be more closely involved in decision making and desiring more information.
Kirk and Pritchard³⁴	United Kingdom	120 (parents); 7 (youth)	Life-limiting conditions	Quantitative and qualitative; Survey and interview	To understand how hospices support pediatric patients and their families during EOL care.	Parents appreciated hospice as a place to openly talk about their feelings, prepare for their child's death, and receive bereavement support from staff after death. They found hospice helpful in communicating about death to surviving siblings but that more was needed for siblings (especially adolescents). Communication with the staff was characterized as confidential, understanding, sensitive, and open.
Lotz et al.³⁵	Germany	11 (parents)	Life-limiting conditions	Qualitative; interview	Parents' needs and perceptions about pediatric ACP.	Most parents thought communication regarding pediatric advanced care planning (ACP) was important, even if emotionally difficult. They appreciated continuity of care and conversations that were individualized, sensitive, gradual, and emphasized hope and quality of life.
Mack et al.³⁶	United States	144 (parents)	Cancer	Quantitative; survey	Parents' perspectives on physician care as related to communication and child's pain experience.	Parent ratings of better physician care were related to their perception that physicians' communicated clearly and with sensitivity about the EOL process and spoke directly to the child when needed.
Mack et al.³⁷	United States	194 (parents)	Cancer	Quantitative; survey	Determine parents' preferences regarding how physicians' share prognostic information	Eighty-seven percent of parents wanted as much prognostic information as possible. Parents who found the prognostic to be very or extremely upsetting (36%) wanted more information than those who reported feeling less upset. They were also just as likely to find the prognosis information important, hopeful, and helpful when making decisions.
Mack et al.³⁹	United States	194 (parents)	Cancer	Quantitative; survey	The relationship between parental hope and disclosure of prognosis.	More prognostic information and high-quality communication provided by the physician correlated positively with higher parental hope, even when the prognosis itself was negative.
Mack et al.³⁸	United States	194 (parents)	Cancer	Quantitative; survey	The role of physician communication in parents' peace of mind.	Parents reported a higher peace of mind when the oncologist communicated high-quality, detailed prognostic information.
McHaffie et al.⁴⁰	Scotland	108 (parents)	Life-limiting conditions	Qualitative; interview	The parental experience of the withdrawal/withholding of life-sustaining medical treatment for their infant	Parents desired consistency, honest communication, and the provision of evidence of their child's physical condition and prognosis to aid in their decision making.
Meert et al.⁴¹	United States	56 (parents)	PICU patients	Qualitative; interview	Parents' perceptions of discussions with physicians regarding their child's terminal illness and death	Communication challenges included physician accessibility and attentiveness, honesty and comprehensiveness of information, communication style (inappropriate affect, body language), withholding of information, provision of false hope, complexity of vocabulary, providing information too quickly, and providing contradictory information.
Meert et al.⁴²	United States	41 (parents)	PICU patients	Quantitative and qualitative; interview	Parental understanding of the decision-making process to limit or withdraw life-sustaining medical treatment from children in the PICU.	Parental perception of quality of care decreased when they felt uninformed about their child's prognosis and cause of death, or when medical teams presented conflicting opinions.
Meyer et al.⁴³	United States	56 (parents)	Pediatric PICU patients	Qualitative; interview	Discussing prognosis and EOL care	Parents valued honest and complete information and staff that was accessible and able to provide emotional support.
Monterosso and Kristjanson⁴⁴	Australia	24 (parents)	Cancer	Qualitative; interviews	To understand parental needs and experiences during PPC.	Parents reported appreciation of compassionate and honest communication with them and their child from healthcare providers. PPC was viewed negatively as part of care associated only with EOL care with a primary goal of keeping their child comfortable as their child approached death. Parents noted that the medical team should better explain the range of services that PPC can provide to families.
Pector⁴⁵	Canada and the United States	71 (parents)	NICU patients from multiple, perinatal, or premature births	Qualitative; survey	The experience of parents who lost a child from a multiple birth, regarding decisions to withhold or withdraw life-sustaining medical treatment and the death process.	Parents appreciated a collaborative approach to EOL care options. Parents reported desiring timely communication when their child began to do more poorly so that they could plan to maximize time with their child while he/she was still living. A number of parents noted comments from the medical team during notification of death that had intended comfort (e.g., “everything happens for a reason”) that did not match the parents' feelings. After death, parents valued opportunities to have their questions answered honestly and quickly.
Rosenberg et al.⁶³	United States	77 (parent–provider dyads)	Cancer	Quantitative; Survey	To understand parent-medical team agreement about prognosis and goals of care for children with cancer.	Parent-medical team concordance about prognosis and goals of care was poor (kappa, 0.12–0.30), with parents often rating a cure as more likely than providers (49% of parents vs. 22% of providers).
Robert et al.⁴⁶	United States	14 (parents)	Life-limiting conditions	Qualitative; focus group interview	To examine communication experiences in bereaved parents whose child had been treated at a tertiary comprehensive cancer center.	Parents emphasized the importance of consistent communication with the same medical providers and within the medical team. In cases when this did not occur, parents' anxiety increased.
Sheetz and Bowman⁷⁹	United States	65 (parents)	Genetic/congenital defect; neuromuscular conditions; cardiovascular conditions	Quantitative; survey	To assess the quality of palliative care.	Almost all parents indicated that the palliative program had helped with decision making and goal setting. Sixty-three percent reported that it helped facilitate communication.
Snaman et al.⁴⁷	United States	12 (parents)	Cancer	Qualitative; focus group interview and thematic analysis	Parent perceptions of communication between staff members, patients, and patients' families during EOL care.	Barriers to communication included information provided without compassion, too much information at once, or not enough information. Parents found it difficult when their primary physician was not available to deliver bad news or if the medical provider displayed discomfort in communicating a poor prognosis. High-quality communication included a strong relationship between the medical team and family, involving the patient in medical planning, providing compassionate explanations, reassurance of medical plan, demonstration of ongoing care for the patient, and individualized interactions.
Steele et al.⁴⁸	United States and Canada	36 (mothers); 24 (fathers); 39 (surviving siblings)	Cancer	Qualitative; interview	How families with a child who has terminal cancer experience EOL care.	Families desired open, honest, and compassionate communication from healthcare providers and an explanation about what to expect during the dying process. They wanted the medical team to respect their need for time to process difficult prognostic information. Parents understood the importance of continuity of care and contact with the medical team after the child's death. Siblings wanted to be included in communication with the medical team.
Sullivan et al.⁷⁵	Australia	25 (parents)	Life-limiting conditions	Qualitative; interview	Parents' understanding of their role and the physicians' in EOL care decision making.	Parents appreciated being informed, involved, and sometimes in charge of EOL decisions. They also valued affirmation from the physician after the decision had been made. They expressed dissatisfaction when they felt physicians took over decision making.
Tan et al.⁷⁶	United States	14 (parents)	Infants with life-limiting conditions	Quantitative and qualitative; interview	Parental experience of grief after the death of their infant in a critical care setting.	Parents reported decreased distress during bereavement if they had been informed of all possible options and had been actively involved in EOL decision making. Parents benefited from speaking with other parents/caregivers with similar experiences.
Weaver et al.⁴⁹	United States	70 (parents)	Pulmonary disease; chromosomal abnormality; cardiac disease; seizure disorder; neuromuscular/metabolic disease; severe brain malformation; heart failure; cancer; extreme prematurity; multisystem organ failure	Quantitative and qualitative	Family self-perceived needs during EOL care.	44 families (62.9%) identified a need to improve prognosis and wishes/hopes communication. 57 families (81.4%) identified a need for more information on diagnosis and symptom management. 18 (25.7%) identified a need to include DNR and EOL decision making in discussions with medical team
Widger and Picot⁵⁰	Canada	39 (parents)	Prematurity; cancer; congenital anomaly or syndrome; unknown (stillbirths); other	Quantitative and qualitative; survey	Parents' perception of quality of care provided at the time of and following their child's death.	Parents most frequently identified communication as a priority for improvement: the plan of care was not well-communicated to all those providing care, staff was not informed of the child's death, and parents were asked the same question by different people. Following the child's death, many parents reported feeling abandoned and cited the need for follow-up support and referrals.
Wocial⁵¹	United States	20 (parents)	NICU patients	Qualitative; interview	Parents' experiences of EOL care in the NICU.	Parents emphasized communication with the healthcare providers, including how physicians helped them accept the reality of their infant's condition, exhibited humility, and conveyed care, which were important factors in their decision making. Parents reported a need for complete information, delivered directly in a way they could understand.

PICU, pediatric intensive care unit; NICU, neonatal intensive care unit; PPC, pediatric palliative care; ACP, advanced care planning; DNR, do-not-resuscitate.

Table 3.

Studies Assessing Healthcare Providers' Perspectives on Communication between Family and Medical Teams

Authors	Location	N	Medical condition of the child	Method	Research topic	Summarized results
Medical staff perspectives
Baverstock and Finlay⁵²	United Kingdom	61 (physicians)	Life-limiting conditions	Quantitative; survey	Physicians' experience of dealing with neonatal and pediatric patient deaths	Physicians explained that EOL conversations with families “go well” when the following factors are present: planning, honesty, mutual respect, time, and privacy. Ninety-three percent of physicians reported initiating follow-up contact with parents within 12 weeks of their child's death. This enabled parents to ask clarifying questions about their child's condition, death, discuss coping, and receive referrals.
Contro et al.¹⁴	United States	446 (interdisciplinary staff)	Hospitalized children	Quantitative and qualitative; survey and interview	Assessment of staff's perceptions of the need for a palliative care program.	A large proportion of staff (30–77%) reported feeling inexperienced in communicating with patients and families EOL care. This included the transition to palliative care and DNR status discussions.
de Vos et al.⁵⁶	Netherlands	137 (physician specialists)	Life-limiting conditions	Quantitative and qualitative; survey	The process through which specialists make EOL decisions, communicate with parents, and resolve conflicts.	Twenty-seven percent of physicians provided parents with advice and permitted them to participate in decision making; 49% of physicians sought parental permission regarding the decision to withhold/withdraw life-sustaining support; and 24% of physicians presented a decision without seeking parental consent.
de Vos et al.¹⁵	Netherlands	27 (physicians)	Life-limiting conditions	Quantitative and qualitative; recorded conversations	Exploration of parent–physician communication regarding decisions to stop life-sustaining medical treatment for pediatric patients.	Physicians dominated conversations about ending life-sustaining medical treatment, speaking about 67% of the time. Rather than including parents in decision making, they provided medical information and explained the decision that the team had already made.
Durall et al.⁶⁷	United States	107 (physicians); 159 (nurses)	Life-threatening conditions	Quantitative; survey	Barriers to ACD with pediatric patients.	Seventy-one percent of all clinicians reported that advanced care discussions (ACD) should occur earlier than they typically take place with families. Three major barriers to these conversations were unrealistic parent expectations, lack of parent willingness, and different understandings of the prognosis between the patient/family and physician. Physicians reported not knowing what to say as a barrier. Nurses noted a lack of prioritization of ACD as a barrier.
Forbes et al.⁶⁸	Australia	162 (pediatric medical staff members)	Children with life-limiting conditions	Quantitative; survey	Current practices among medical staff regarding discussions with families about the withholding or withdrawing of LSMT in a pediatric setting.	Medical staff named several barriers to discussing the withholding or withdrawal of life-sustaining treatment with families, including a lack of family readiness, family disagreement with the treatment plan, and uncertainty about the prognosis. Senior medical staff (SMS) were more comfortable initiating these conversations with parents than junior medical staff (JMS). Approximately 58% of JMS and 35.8% of SMS indicated that they had not been given any specific education regarding this topic, and many desired trainings and resources.
Harrison et al.⁸⁰	United States	133 (healthcare providers)	Life-limiting conditions	Quantitative; survey	The processes by which medical staff communicate within their team about death and dying in pediatrics.	When healthcare providers feel comfortable talking about EOL care with colleagues, they are more likely to have discussions with the family about death and dying, EOL care options, how parents can explain death to their child. There is also increased follow-up with the family after the child's death. Those who initiated these conversations often had formal training in grief and bereavement.
Jones⁵⁹	United States	131 (social workers)	Cancer	Quantitative and qualitative; survey	To describe the psychosocial needs of children and adolescents with terminal cancer.	Social workers reported a need for consistent and honest communication between themselves, the medical team, and the family, particularly for families with young children; they note that pain and symptom management is the first priority, which also requires communication.
Kavanaugh et al.¹⁶	United States	4 (parents); 6 (physicians); 2 (nurses)	Extremely premature infants	Qualitative; interview	To understand the EOL decision-making process and needs of parents.	Physicians viewed their role as providing parents with information to make EOL decisions (although some became directive at specific gestation periods). Nurses described helping parents understand the prognostic information. Physicians' perception of shared decision making was greater than parents' perception.
Provoost et al.⁷⁰	Belgium	253 (physicians)	Neonates and infants with life-limiting conditions	Quantitative; survey	To understand how often EOL decisions for neonates and infants are discussed with parents.	In 84% of cases, physicians reported discussing EOL decisions with parents. Physicians were less likely to consult parents when they believed there was no chance of survival for the infant.
Price et al.⁶¹	United Kingdom	35 (health and social providers in palliative care)	Life-limiting conditions	Qualitative; focus group	Healthcare providers' perspectives on services needed for children during EOL care.	Medical staff reported tension with parents regarding how much prognosis information to disclose to the pediatric patient and struggled to include siblings in EOL care.
Rapoport et al.⁶²	Canada	44 (physicians)	Life-limiting conditions	Quantitative and qualitative; survey	To explore physician (nonpediatric specialists) understanding, attitudes, and level of comfort regarding PPC	Many felt “somewhat” or “very” comfortable initiating difficult EOL care discussions with patients and their families. These included talking with siblings/friends of the patient (57.5%) and discussing the limiting or withdrawing life-sustaining medical treatment (65.9%).
Vrakking et al.⁷¹	Netherlands	192 (physicians)	Life-limiting conditions	Quantitative and qualitative; Records review and interview	To understand the pediatric EOL decision-making process in the Netherlands.	Only 36% of pediatric deaths were preceded by an EOL decision. While 100% of parents were involved in EOL discussions, children were rarely considered competent or partially competent to participate in EOL discussions. All those deemed competent (∼12%) and nearly half of those deemed partially competent participated in EOL discussions. Fifty percent of physicians reported that they received a parental request to end the child's life. Fifteen percent reported that a child made a request to end his/her life.
Yoshida et al.⁶⁶	Japan	10 (healthcare providers)	Cancer	Qualitative; focus group and individual interviews	Identify barriers for physicians to initiate EOL decision-making conversations with pediatric patients and their families.	Barriers for physicians included a lack of knowledge and experience with how and when to discuss the EOL decisions with the patient, lack of confidence in the decision, uncertain prognosis, uncertainty regarding their responsibility for the decision, fear of discomfort, and patient reaction. Patient factors included a lack of cognitive ability or readiness and the patient protecting their parent. Parent factors included lack of willingness or readiness to discuss decision with their child or refusal to acknowledge the condition and unrealistic expectations. Institutional/cultural factors inhibiting EOL care conversations included organizational norms, lack of support for patients after the conversation, and a lack of belief in the afterlife.
Chart reviews
Bell et al.⁷²	United States	103 (adolescents)	Cancer	Quantitative; chart review	Initiation of EOL care discussions with adolescents and/or family.	Fifty percent of initial EOL conversations with the adolescent began within the last 30 days of their life; time from initial EOL conversation to DNR conversation was 1 day in 50% of the sample.
Drake et al.⁷³	Australia	30 (children)	Cancer; heart condition; neurological; gastroenterological; other	Quantitative; chart review	End-of-life DNR conversations with the pediatric patient.	Of children with terminal diagnoses and no preexisting DNR order, 58% had DNR orders addressed for the first time within the last 24 hours of their life.
Edwards et al.⁶⁹	United States	47 (children)	Life-limiting illness involving chronic respiratory failure	Quantitative; chart reviews	Best approaches to ACP with families of children on long-term assisted ventilation.	Seventy-two percent of deceased ventilator-assisted patients had ACP; 51% had two or more discussions. Discussions typically were started after patient began to deteriorate.

LSMT, Life-sustaining medical treatment.

Of the 65 included studies, 1 took place in South America, 35 took place in North America, 22 in Europe, and 1 in both Europe and North America. A total of six studies took place in Australia and New Zealand and one in East Asia. A total of 30 studies focused on children receiving EOL care for cancer, 8 on patients with heart conditions, 4 on children with neurological issues, 1 on conditions involving seizures, 1 on conditions causing respiratory failure, 3 on brain tumors or abnormalities, 9 on complications from multiple, perinatal, and premature births, 3 on genetic or chromosomal abnormalities, 1 on gastroenterological issues, and 36 on a combination of life-limiting conditions.

Study participants

Sample sizes for the studies ranged from 7 to 13 pediatric patients,^17,18 7–18 siblings,^19,20 4–429 parents,^16,21 and 9–446 healthcare providers.^22,23 One study focused solely on the perspectives of pediatric patients with life-limiting conditions, 38 studies included only parents with deceased or dying children, and 3 studies examined parents and children together. Three studies examined the needs of surviving siblings, and three studies explored the perspectives of family members in general.

Parental and healthcare provider perspectives were included in two studies, and one study explored the perspectives of the pediatric patient, their parents, and their healthcare providers. Eleven studies documented only the perspectives of healthcare providers, and three studies were exclusively chart reviews. Although some studies included quantitative data, the majority used qualitative methods. Studies collected data through the examination of medical records, surveys, and individual and/or focus group interviews.

Communication Within the Family

Communication between caregivers and child

All three of the studies that examined communication between parents and children with a terminal diagnosis focused on if and how parents discussed death with their child; none of the studies included communication with the child about EOL care. Only one study included patients with diseases other than cancer. Most studies implemented a qualitative approach (see Table 1).

While research regarding how parents make decisions about discussing death is still in early stages, several studies identified the following potentially influential factors: families were more likely to discuss death if they were more religious, the child was older, and they perceived that the child was more aware of their medical condition and possible death.²¹ Those who elected to discuss death with their child wanted to prepare their child for death, support their child's needs and wishes, help their child cope, and foster closeness in their relationship with their child.^13,24 Those who refrained from discussing death aimed to protect their child and themselves.^13,24 In reviewing parents' choice about discussing death with their child, no parents reported regrets about discussing death, whereas 27% who did not discuss death with child expressed regret.²¹

Communication between caregivers and surviving siblings

To date, three studies have examined communication about EOL with a surviving sibling. Preliminary research has suggested that parents approach talking with surviving sibling about death similarly to how they approach the dying child: avoiding discussions to try to protect children or engaging in discussions to help children prepare for the death of their brother or sister.¹³ One study suggested that the majority (87.5%) of parents' spoke with siblings about the child's death (from the parents' perspective).²⁵ The two studies which included data from surviving siblings' perspectives suggested that siblings held concerns about their brother or sister's impending death and wanted to be consistently informed and involved in their sibling's life and EOL care.^19,20

Communication between the Family and the Medical Team

General EOL care communication

Twenty-eight studies suggested that parents perceive communication with the medical team as an important part of pediatric EOL care.^{14,16,22,26–51} Thirty-three studies focused on a facet of provider–patient/family communication regarding a difficult prognosis.^{22,23,27,29–32,34–37,40,42–44,46–49,51–64} Thirteen studies identified communication problems between parents and medical team such as gaps in communication among medical staff and provision of contradictory medical information to parents,^{28,41,44,46,48,50} use of confusing medical terminology,^22,27,41 delivery of bad news in an uncaring manner,^14,41,45,47 not providing enough information,^29,30,47,49 and providing information too quickly.^41,47

One study revealed that language can be a significant barrier to parent–provider communication, and many non-native English speakers reported that they were never informed of their right to an interpreter or that one was not available during daily care activities and important conversations with physicians.²⁹

Parents valued receiving information in a sensitive manner^{31,35,36,47,51} and expressed an appreciation for honesty about prognosis and medical plans.^{16,33,40,43,45,48,51} Parents also reported a desire for the medical team to show respect for the child–parent relationship and their religion and culture.^32,43 Siblings are often left out of EOL discussions with the medical team,^61,62 but reported a desire to be included.^48,65 For example, results from one study indicated that surviving siblings felt that their distress during the dying process would have been lowered if they had received more support and consistent information about their sibling's condition from medical staff throughout the illness (rather than only when their sibling was actively dying).⁶⁵

While results consistently demonstrate that families prefer honest and timely information as described above, this may be challenging for providers who are not comfortable initiating EOL conversations. For example, one study found that the majority of physicians (53.7%) felt “somewhat uncomfortable” or “very uncomfortable” when telling their pediatric palliative patient the truth about their prognosis.⁶² Another study found that 30–77% of their medical team members reported that they were “inexperienced” in communicating about pediatric EOL.¹⁴

Specific barriers to EOL conversations included unrealistic parent expectations,^66,67 different understandings of the prognosis and disagreement over the treatment plan,^66–68 and a lack of parental willingness to acknowledge the child's condition or readiness to engage.^66–69 Healthcare providers noted that the quality of EOL conversations are improved when there is mutual respect between the patient and their family and the medical team.⁵²

Communication about EOL decision making

Much (eight studies) of the pediatric EOL research on communication from a medical provider perspective focused on EOL decision making.^{15,56,62,66–68,70,71} Chart review studies have suggested that EOL decision-making discussions are often delayed until the patient is actively dying.^69,72,73 For example, in an investigation examining adolescents with terminal cancer, 50% of initial EOL conversations began within the last 30 days of the adolescent's life.⁷² Similarly, another study found that of 30 children with terminal diagnoses, 58% had do-not-resuscitate orders addressed for the first time within the last 24 hours of their life.⁷³ This is consistent with a study surveying clinicians regarding their opinion of patient–family involvement in EOL decision making which identified that 71% reported that advanced care planning (ACP) conversations should occur earlier than they typically took place.⁶⁷

Medical providers' approach to involving parents in EOL decision making varied on a spectrum from a more paternalistic approach to full parental autonomy.⁵⁶ Some studies showed that providers' took a collaborative approach with families with shared decision making.^16,52,56,70 Others took a more paternalistic approach of making EOL decisions and informing families of their decsion.^15,56,70 This latter approach may have been influenced by the severity of the child's illness (i.e., if survival was not possible, parents were less likely to be consulted in decisions).⁷⁰

Although many parents did not desire full autonomy when determining whether to limit or withdraw life-sustaining treatment,⁵³ research has indicated that parents may be able to manage a more active role in decision making about their child's care if they are given the opportunity.^15,74 Some research has indicated that parents have a strong need to be involved in an individualized EOL decision-making process with their child's medical team,^15,53,75 a factor that has been shown to decrease long-term parental grief.^55,69,76 Many parents also believed that their child should be involved in the development of their own ACP in a way that was developmentally appropriate.³⁵ Parents reported that it was important that the medical staff affirmed EOL decisions that parents made^35,54,75 and that they needed support and flexibility from the medical team when reconsidering their EOL decisions.³⁵

Physician hesitancy to initiate these discussions with patients and their families stemmed from an uncertain prognosis, lack of confidence in the decision, and uncertainty regarding their responsibility for the decision.⁶⁶ Medical staff sometimes lacked the knowledge and experience to feel comfortable initiating EOL decision-making discussions with the patient and their family and feared discomfort or the patient's reaction, particularly when there were little or no emotional support resources available for the patient postconversation.^66,67 In one study, nurses referenced a lack of physician prioritization of family involvement as a deterrent to collaborative EOL decision making,⁶⁷ which may be encouraged by institutional norms.⁶⁶ Physicians reported additional barriers of collaboration in ACP to include impaired cognitive ability of the patient, lack of patient readiness, and patients trying to protect their parent.⁶⁶

Conclusions and Discussion

Findings from this systematic review suggest several primary conclusions as follows: (1) there is ample evidence from both families and providers that communication is very important in pediatric EOL care, (2) barriers to communication between families and providers have been consistently identified, and (3) we know very little about pediatric patients and siblings' experiences and intrafamily communication around pediatric EOL.

Furthermore, results from this review suggest that communication could be improved between (1) parents and children receiving EOL care, (2) parents and their surviving children, and (3) families and their medical team. A primary role of PPC teams is improving the communication between families and medical teams and helping to facilitate discussions within families. PPC is particularly well poised to promote communication and be of great value to both families and medical teams. Expanding our knowledge about communication gaps and developing tools to promote communication in context of EOL discussions should be of high priority to our pediatric medical community.

Parents differ in their approach to communicating with their child and surviving siblings about EOL care and anticipatory death in a number of ways (frequently avoiding the topic, although often with good intentions).^13,17,18 Results from this review suggest that parents make thoughtful decisions regarding whether and how to discuss death with their child when they are given a terminal diagnosis. It is unlikely that any single solution will work across all families. However, parents may benefit from education about what kind of information to provide children and siblings during this difficult journey; medical teams may want to consider how they can support intrafamily communication.

While there are a number of very well-articulated, well-theorized models of PPC and the importance of communication within family members and between family and medical teams is recognized,^{9,10,16,19–21,27,32,33} many parents continue to report communication challenges with medical teams.^{13,22,27–29,41,44–50} In addition, pediatric patients and siblings are often left out of EOL care discussions.^61,65 Healthcare providers also report barriers, including unrealistic parent expectations,^66,67 different understandings of the prognosis and disagreement over the treatment plan,^66–68 and a lack of parental willingness to acknowledge the child's condition or readiness to engage.^66–69 Many medical professionals reported little or no preparation in how to initiate EOL discussions with pediatric patients and, consequently, felt uncomfortable including the patient and family in this decision-making process.^15,63 Institutions in which providers regularly care for children at EOL may want to offer additional training to support providers in communication about EOL challenges. Given that EOL communication and ACP may be delayed for many families,^57,68,73 trainings may want to include information on how to introduce ACP as part of a standard approach to care and before when the child is actively declining. Trainings may also want to integrate existing recommendations of how to facilitate family meetings and communication with parents. For example, providers may benefit from rehearsing what they are going to say and how to say it, preselecting a meeting location and those individuals who will be present (e.g., including a psychosocial provider), offering a plan for the next step, creating an atmosphere for families to ask questions, and bringing an awareness of the family's cultural background as it may relate to the understanding or reactions to a difficult prognosis.^32,34 The exact content and intensity of training for optimal comfort in EOL communication is an avenue for future research. In addition to training, medical teams can consult PPC teams (where available) earlier in the child's medical path, as those families who have received PPC report improved communication.¹²

Several limitations of this review should be considered. First, a few factors may limit generalizability of conclusions: many of the studies have small samples and provided qualitative data only, research included in this review was conducted across the world and some of the findings may have been influenced by cultural factors, and much of the research presented was conducted with either neonatal intensive care unit samples or pediatric cancer. In addition, as mentioned previously, only a few studies have been conducted regarding intrafamily communication, so conclusions based on the results of these studies should be interpreted with caution.

These limitations highlight avenues for future research. When examining communication between parents and medical teams, researchers may want to consider conducting larger multisite studies using either a quantitative or mixed methods approach to enhance generalizability of research findings. In addition, more research is needed to better understand how medical teams can support pediatric patients and their siblings when EOL care is necessary. Medical teams can be integral in guiding families in supporting their children through the EOL path, but more research is needed to determine the best approach for this support.

Footnotes

Acknowledgments

The authors thank Paul Miller Mazda (Lexington, KY) for their funding contribution toward this research.

Author Disclosure Statement

No competing financial interests exist.

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