Perceptions of a Good Death in Children with Life-Shortening Conditions: An Integrative Review

Abstract

Background:

For children with life-shortening illness, achieving a “good death” can be a tacit goal. There is little understanding of how different stakeholders perceive what a “good death” might be.

Objective:

To review empirical literature to construct an understanding of a “good death” for children with life-shortening conditions.

Design:

An integrative review approach was followed. This involved searching across Embase, Web of Science, Medline, CINAHL, and PsycINFO (no date limits set), as well as identifying eligible studies tracking reference lists. Appraisal of shortlisted articles in full text was performed, followed by data extraction, synthesis, and interpretation.

Results:

Analysis of articles (n = 24) yielded a dynamic and layered narrative about a good death that revolved around three themes. (1) Level of needs: includes both practical support and aspirational goals such as “do everything.” (2) The composite experience: whether positive or negative adds to produce a sense of suffering. (3) Control (preservation and letting go): moving from maintaining status quo to acceptance of the child's death, the experience of which also contributes to suffering. Framed using a health care system perspective, a concept map that interprets a good death in children with life-shortening conditions is represented.

Conclusions:

A single yet holistic understanding of a good death experienced in the “real world” is suggested. Pediatric health and social care providers, and even policy makers, can use this new understanding to conceive alternative approaches to enhance support to dying children and their families.

Background

In the United States, more than 50 children die a day. It is estimated that up to three-quarters of these children and their families could benefit from palliative care and hospice support, alongside condition-specific care by primary physicians.¹ Supportive care before these children die may be rendered in the institutional setting, or in the community including at home.^2,3 Initiatives to improve end-of-life care in medically ill children must consider this care complexity that may involve different stakeholders in multiple settings.

Many pediatric palliative care programs have been established in the last decade.^4,5 While laudable, it is critical to ensure that beyond access, the needs of dying children and their families are adequately met. Particularly in the context of pediatric end-of-life care, while “doing everything possible” seeking further life-prolonging treatments,⁶ facilitating what is often called a good death can be a parallel goal.^7,8

There has been considerable debate on the notion of what may be meant by a good death and the ramifications this has for care.^9–16 Most literature discusses this concept in relation to adults, but the attributes of a good death in children have not been well described. The aim of this integrative review is to understand how a good death in children with life-shortening conditions is perceived, from the perspective of multiple stakeholders.

Design

This review follows the integrative review design of Whittemore and Knafl.¹⁷ It is a robust, systematically constructed approach that strives to be inclusive with its “open methodological stance,”¹⁸ enabling data from diverse sources to be synthesized for holistic understanding.¹⁹ Given the review objectives, critical realism²⁰ was adopted as the philosophical paradigm to underpin synthesis. It posits one social reality that exists at three levels²¹: empirical (where phenomena and meaning making are experienced or cocreated), actual (naturally occurring events, whether perceived or not), and causal (where underlying structural mechanisms exist). Review reporting followed the ENTREQ statement.²²

Literature Search and Selection

Searches were performed across five databases in December 2016 (updated in May 2018): Embase, Web of Science, Medline, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsycINFO. Search strings combined variations of “patients,” OR “next of kin,” OR “healthcare providers” (population), AND “death” (exposure) AND “perspectives” (outcomes). The search strategy for Medline database is available in Supplementary Table S1 (Supplementary Data are available online at www.liebertpub.com/jpm).

The inclusion criteria were as follows: (1)

Empirical research on experiences around death and dying in children with life-shortening conditions.

(2)

Study samples that included patients, family caregivers, and/or health care professionals.

(3)

Reported perceptions from those who were directly involved in caring for dying children.

(4)

The children referred to in the study were older than one year (neonatal or infantile deaths not a focus of this review), adolescents, teenagers, or young adults (younger than 19 years).

Articles were excluded if studies were as follows: (1)

Not empirical research published in a peer-reviewed journal.

(2)

Reported in a language other than English.

No date limits were set. EndNote X7 software was used to manage citations, while NVivo 11 program supported analysis.

Appraisal of Selected Studies

The Australian Palliative Residential Aged Care (APRAC) Guidelines: Evidence Evaluation Tool was used to assess quality and relevance of selected studies.²³ Although not previously used in the pediatric setting, the tool had been customized based on the Cochrane and Campbell Collaboration guidelines.^24,25 Quality was addressed using eight questions, each requiring a yes or no answer (scoring one or zero, respectively). The sum total ranges between zero to eight points, with score of eight implying best quality. Relevance was rated by assessing applicability of findings to the review question, with scores that can range from a low of one to a highest of four.

Data Synthesis

For dependability of findings, a protocol for the integrative review was set up in advance.²⁶ The steps in data synthesis¹⁷ involved the following: (1)

Data reduction—extracting relevant sections from selected articles for an organized handling of data.

(2)

Data display—grouping excerpts from primary sources around meaningful variables in tables.

(3)

Data comparison—iteratively studying the displayed data, variables of interest are put into conceptual maps that show patterns, variations, or relationships.

(4)

Drawing conclusions—moving beyond describing patterns to higher levels of abstractions.

Selected articles were “coded” line by line, similar to how interview transcripts are handled in qualitative research. Emerging insights were recorded in memorandums. Relevant points are shared alongside findings in the Results section. In addition, in the process of coding, second-order findings that are interpretations of primary data by investigators were also coded and extracted. These were obtained from discussion sections of the articles. To achieve what Whittemore and Knafl¹⁷ referred to as an innovative synthesis of evidence, analytic approaches developed for qualitative and mixed-method designs were adopted. One such technique, the constant comparison method,^27,28 was applied throughout. It entails categorizing, for example, an action, event, or participant into a general class, either conceptually or theoretically, through iterations during data analysis.

The first author (P.H.C.) performed most of the literature search, study appraisals, and data synthesis. The other authors provided oversight through participation for a sample of articles. A conceptual framework was drafted by P.H.C., before being developed further over virtual meetings between all authors.

Results

The review process is illustrated in Figure 1. Twenty-nine articles met the inclusion criteria initially (seven were added in May 2018).

FIG. 1.

PRISMA flow diagram showing literature search and selection.

Table 1 shows the quality and relevance scores for all 29 articles. Five studies^{43,47–49,53} (highlighted in italics) below threshold set for quality (above score of four) and relevance (above score of 1) were not included in the final synthesis.

Table 1.

Research Focus and Appraisal Outcomes of 29 Selected Articles

Reference	Focus	Quality,(0–8 points)	Relevance,(1–4 points)
Balkin et al.²⁹	Compare physician and parent perspectives regarding prognosis and end-of-life experience of children with advanced heart disease	8	2
Björk et al.³⁰	Parents' experience of losing a child to cancer	7	3
Cataudella and Zelcer³¹	Experience of children with brain tumor in their last month of life from parents' perspectives	8	3
Davies et al.³²	Experience of mothers from different countries who each had a child die of cancer	8	3
Davies³³	Experience (and needs) of mothers whose children died in different settings (hospital, home, and hospice)	7	4
Eskola et al.³⁴	Parents' experience and needs during their children's end-of-life care at home	8	4
Flavelle³⁵	Case study of an adolescent's experience of living and dying of cancer	5	2
Granek et al. ³⁶	Perspectives of pediatric oncologists on challenging patient deaths	8	3
Higgs et al.³⁷	Perspectives of parents with children diagnosed with SMA type 1 from diagnosis to bereavement	8	3
James and Johnson³⁸	Parental needs while their child was dying of cancer	8	3
Kars et al.³⁹	Parental experience at the end of life (EOL) in children with cancer	8	4
Kars et al.⁴⁰	Parental experience (and meaning making) when caring at home for their child with incurable cancer	8	4
Lamiani et al.⁴¹	Parental experience of end-of-life care in a pediatric intensive care unit (PICU)	8	4
Lan and Yun⁴²	Parental experience in the end-of-life care of children with life-limiting conditions	5	2
Latha et al.⁴³	Perspectives of parents on their cancer child's end-of-life care	4	2
Lovgren et al.⁴⁴	Siblings' experience of brother's or sister's cancer death	8	2
Lovgren et al.⁴⁵	Parental experience (and wishes) at end of life in children with SMA type 1 and 2	6	2
McConnell and Porter⁴⁶	Experiences of care team staff providing end-of-life care in a children's hospice	8	2
Midson and Carter⁴⁷	Developing an end-of-life care pathway through a survey of parental needs and experiences	3	2
Muskat et al.⁴⁸	Experiences of acute care pediatric social workers who work with dying children and their families	8	1
Nafratilova et al.⁴⁹	Experiences of parents with children suffering from cancer receiving palliative care	4	1
Price et al.⁵⁰	Parental experience of caring for children with terminal conditions throughout the entire trajectory and subsequent death	8	3
Price et al.⁵¹	Compare priorities between health care providers (HCP) and parents in the care of children at the end of life	8	2
Eaton Russell et al.⁵²	Perspectives of siblings with a brother or sister dying at home or in hospital	8	4
Suryani et al.⁵³	Nurses' understanding of what comfort means to dying children	4	1
Vickers and Carlisle⁵⁴	Perspectives of parents caring for a dying child at home	8	3
von Lützau et al.⁵⁵	Experience of children dying from cancer from the perspectives of parents	8	2
Zelcer et al.⁵⁶	Experience of children with brain tumors and their families at the end of life	8	2
Zimmermann⁵⁷	Perspectives of parents facing the death of their child (from four diagnostic groups)	8	2

References in italics have not met the threshold set for quality and relevance.

Included studies (n = 24) focused on children with cancer (n = 12), nonmalignant disease (n = 3), or a variety of diagnoses (n = 9). Studies came from North America (n = 7), Europe (n = 14), Australasia (n = 2), and a mix of five countries (n = 1). Studies were conducted in diverse settings, including nationwide and regional centers, institutions and community agencies, single hospital across departments, wards, or individual services. Nineteen studies used qualitative methods, while five used mixed-method research.

Themes

Three broad themes were identified after the process of coding (data reduction) and categorization (data display): “level of needs,” “the composite experience,” and “control.”

Level of needs

Needs were interpreted at two levels, that of day-to-day expectations and aspirational goals (Table 2). On the first level, “wish list or expectations” comprised practical needs that often varied in nature. These can be organized into three aspects: structure related, for example, provision for respite or a quiet location in the ward to grieve; process related, for example, dedicated services for grief support or follow-up after the child's death; stakeholder related, for example, specifically attending to siblings or honoring parents' wishes to provide hands-on care. Conversely, on a higher level, aspirational needs such as “goals at the end of life” embody different types of longing frequently heard in practice, such as doing everything possible, maintaining hope, and minimizing suffering.

Table 2.

Level of Needs (Met or Unmet)

	Excerpts from the literature
Wish list or expectations
Actively caring for the dying child	The only answer to the child's vulnerability and dependency was for parents to transform their boundless love into unconditionally caring for their child and being present.³⁹
Follow-up after the child's death	The need for connectedness remained … would have welcomed some formal follow up after their child died.³⁸
Involvement in EOL decisions	Parents reported ambivalence about their involvement in end of life decisions. Some parents clearly expressed the importance of being informed and participating … but they did not want to ultimately decide about withdrawal of life support treatment.⁴¹
Respite care	While the provision of respite care gives parents a much needed rest from caring for their ill child, of more importance was the fact that it enables them to focus on their other children/each other/other family members.⁵⁰
Bereavement support service	Awareness of families' manifest need for bereavement support and lack of relevant service.
Talk openly with dying children	Being able to talk openly with dying children is an important factor in facilitating a child's expression of choice and control over all aspects of care.⁵⁴
Special treatment	Because of the severity of their child's illness compared with other children, they should not have to wait long to see a physician.³⁸
Goals at the end of life
Reduce patient's suffering	The majority of both physicians and parents reported that their primary goal for the medical care provided to the patient once they realized there was no realistic chance of child survival was ‘to lessen the patient's suffering as much as possible’.²⁹
Doing everything possible	Parents expressed that they would never forgive themselves if they had not tried everything to save their child.³⁹
Stay home	During the final stage of illness, nearly two thirds of the mothers were given a choice of caring for their children … most chose home whether or not established home care services were available.³²
Be with patient at point of death	“I wanted to be with him when he died and that made me very nervous at the end because you do have to sleep and I just couldn't stand the thought that he would die alone or with a stranger and it was my worst nightmare.”³⁸
Maintaining hope	Maintaining hope for a cure was a prominent theme across all focus groups, even at the end stages of life.⁵⁶
Unmet needs
Spiritual care	Twelve (63%) mothers indicated that they were in need of spiritual care during the last month of the child's illness. None reported receiving spiritual care from either the hospital chaplain or the hospital staff.³²
Coordination and continuity of care	Experiences with continuity and coordination of care were rated lowest of all quality domains by parents from all diagnostic groups, and perceived satisfaction with care within this domain was lowest as well.⁵⁷
Access to respite	The parents' need to be with and care for the dying child often presented conflicts when they had other responsibilities, such as parenting other children.³⁸
No point of reference to guide own experience	Parents felt a deep lack of a model: “You've never been in this situation before.”³⁹
Attending to the siblings	During the last 24 hours before the loss, 43% of the siblings reported getting no information about the impending death of their brother/sister from a family member.⁴⁴
Meeting health care providers after the death	After their child died, some parents felt abandoned by professionals, because professional support stopped and there was no further regular contact.³⁴

Closer examination of these needs revealed a common thread, that of duality and ambivalence. For instance, most parents wanted to be personally involved in making critical decisions for their child. Yet, this might not extend to decisions involving withdrawal of treatment:

“Some parents clearly expressed the importance of being informed and participating … but they did not want to ultimately decide about withdrawal of life support treatment.”⁴¹

In addition, some wished that they could talk more openly with their own children when it became obvious that they were going to die, yet felt compelled to maintain hope for survival. Nevertheless, some did manage to keep both notions at the same time:

“Maintaining hope for a cure was a prominent theme across all focus groups, even at the end stages of life. Families described the ability to hold on to two dichotomous beliefs: the realism that their child's prognosis was poor and the search for a miracle.”⁵⁶

This observation triggered a reflection; the goals to reduce suffering while doing everything possible do seem to conflict. The implication (and question) here is to what extent this factor burdens caregivers.

Respondents in several studies said that their needs were never met. One area cited was that of coordination and continuity of care.

“The lack of a key worker 24/7 left parents to navigate the healthcare system on their own, with no support and anticipatory guidance, especially during the night and weekends.”⁴²

A mismatch between needs and response from care providers adds to the total burden of care, and this could contribute to perception of suffering.

The composite experience

Beyond needs, stakeholders faced other challenges as they navigated the health care system (Table 3). These included negative experiences among health care providers themselves:

Table 3.

Perception of Suffering in Relation to the Composite Experience

	Excerpts from the literature
Negative experiences
Receiving conflicting information	42% (13/31) of parents in this cohort felt they “sometimes” received conflicting information from members of the care team during their child's EOL care period.²⁹
Unprepared for the child's death	55% (17) of parents reported feeling unprepared for the way the child died.²⁹
Not given ‘time’ and space' to be with dying child	Within hours, he was taken to the mortuary and she had to leave. She described her anguish: “I've got to say, in everything, the hardest thing I ever had to do is walk away from the hospital.”³³
Suboptimal control of symptoms	Parents in this study also reported feelings of helplessness, frustration, and lack of control in relation to alleviating the child's pain and suffering.³⁸
Sense of abandonment by health care providers	“People do sort of disappear when the child's going to die. It's sort of like, they're all gone because they can't cope with it I guess…”³⁸
Loss of parental role and family intimacy in the hospital setting	The parents who had the chance of experiencing their parenting role at home often felt that their knowledge of the child and their ability to provide care was disregarded by clinicians.⁴¹
Inconsistent or change in health care providers near end of life	There was a change in shift on the ward at the time of death.⁴⁵
Treatment withdrawal; complications related, sudden or unexpected deaths	Pediatric oncologists noted that even though withdrawing treatment or support was necessary and agreed on by the health-care team and the child's family, it nonetheless posed an added difficulty when the child died.³⁶
Altogether a most difficult journey	The on-going disruption is characterized by an unfolding succession of events over which parents feel they have little or no control, sometimes little or no understanding and which invariably demands complex decision-making.⁵⁰
Positive experiences
Relationship between HCP and child that facilitated death conversations	Many parents reported that the relationships developed between staff and their children helped to facilitate discussions about death and dying when as parents they could not.³¹
Special qualities of HCP	Parents felt cared for when they thought the healthcare professionals were respectful, sensitive, compassionate, empathic and consistent.³⁸
Given control over how or where child died	Forty three parents (90%) spent as much time as they wanted with their child after death and 44 of the 48 (92%) said goodbye in a way they wished.⁴⁵
Be there with child at point of death	Although unable to ultimately protect their child (i.e., from death), ‘being there’ at the point of death comforts parents.⁵⁰
Actively rendering care on their own	Parents were able to do something for their child, to become active participants and this was something that is perceived as “positive” and “good”.⁵⁴
Access to HCP day and night	Reachability day and night (hospital and community care).⁵⁷
Supported both individually and as a family	They supported by “just being there” or by connecting in some personal way such as through eye contact or with a smile.³²
See death as “end to suffering”	The moment after death was described by parents as the only time in which they could have the child back, free of medical aids and restraints, in a human way that was not possible before.⁴¹
Perceptions of suffering
Loss of function and physical changes in dying child	“Up until then he had adjusted quite well to the diagnosis, and most of the time his spirits were pretty good, but not in the last month.”³¹
Caregivers anticipating impending loss during the dying phase	Knowing this all will end, together with the awareness of the excruciating pain his/her absence will cause in their future life, brings about unbearable feelings of loss.³⁹
Withdrawal from outside world commonly seen in dying child	Many parents experienced moments where their child withdrew from them by turning inward or not wanting to be touched … Parents realized that, in the end, their child inevitably would have to go through the process of deterioration and dying alone.³⁹
Whether “preserving” or “letting go,” sense of suffering prevails	“You are torn between these two things, that it would have been more comfortable and easier for her (to die) four weeks earlier, but at the same time you desperately wanted a little more time with her, that's the way it is.”³⁰
Lack of support at home (especially after hours) causing helplessness and distress	The lack of a key worker 24/7 left parents to navigate the healthcare system on their own, with no support and anticipatory guidance, especially during the night and weekends.⁴²

“Unexpected deaths were hardest on the families, and therefore, also hardest on the oncologists.”³⁶

In this study, the oncologists shared a common humanitarian perspective with many; that the death of any child is against the order of nature. Another point made by the same group surrounded children with cancer dying from medical complications, where frustration related to lack of mastery or control is evident.

Not all experiences in this context were negative though. There were also moments when people felt gratitude in crisis, validated for their selfless devotion, or simply well supported by their providers. Summation of these encounters both good and bad produced the composite experience that colored the perception of suffering for those involved. Most acknowledged that it was a difficult journey for everyone, although there appeared some ways to make the death “better.” For the professionals, their attitude and supportive acts in sharing information consistently or giving bereavement support were mentioned. From the parents' perspective, directly rendering care themselves and being present at the time of death seemed critical. Finally, systemic factors included a family-centered approach to care, access out of hours, and adequate time and space in and around the death of a child.

Suffering (of different degrees) was a given, and both the family and health care professionals perceived it. Death in itself could be recognized as an end to suffering:

“The moment after death was described by parents as the only time in which they could have the child back, free of medical aids and restraints, in a human way that was not possible before.”⁴¹

Control (preservation and letting go)

A third theme identified mainly from second-order findings (described in Design section) was “control.” The imperative for control was pervasive and constant, and affected all stakeholders (patients, parents, and professionals).

Patient's perspective:

“Ed was trying to navigate through adolescence while fighting a serious illness … Like most teens, Ed fought for independence from his parents, but this became difficult as his mobility worsened and he was forced to rely heavily on his family.”³⁵

Parent's perspective:

“Feelings of loss threaten parental strength and in reaction, parents seek control.”³⁹

Professional caregiver's perspective:

“The unexpected, acute deaths from complications were described as especially difficult … there was a sense of frustration and irritation over a death caused by a medical complication rather than the disease itself.”³⁶

Control seemed a precondition for fulfilling fundamental parental tasks.³⁴ Critically, it mediated the passage from “preservation” to “letting go” as the sick child entered the dying phase. This process was not unidirectional but rather an oscillating one, not unlike the dual-process model of grief.⁵⁸ A swing in locus of control between parents and health care professionals was anticipated in the process of transition. Parental perception of suffering was reported to be influenced considerably by the entire experience.³⁹

Demonstrating interdependence of various stakeholders (and other “conditions” within the system), provision of informational, emotional, and instrumental support by health and social care providers, enhanced the sense of order and personal control for some, and sense of authority over the child's care and life with wider family for others. Overall, this aspect of control was inferred to have kept fear and uncertainty (contributing to a perception of suffering) that marked day-to-day living within limits of tolerability, particularly for parents involved.⁵⁰

Synthesis of preliminary findings

Sphere of influence (overall construct of a good death)

Analysis and interpretation of all the findings, expressed as functions of distinct yet interconnected categories brought synthesis to a different level of abstraction. It involved searching for patterns, variations, and relationships among those three themes, within and across different variables (data comparison and drawing conclusions—steps 3 and 4 of data synthesis in an integrative review described earlier). A concept map was created to display and explain the conclusions that were drawn (Fig. 2).

FIG. 2.

Concept map for a good death in children with life-shortening conditions.

The sphere of influence (a tentative model that requires further testing) refers to the entire health care context (whether in hospital or home) within which stakeholders interact. In line with critical realism, not only does the sphere cover relational experiences and meanings among stakeholders (e.g., unmet needs and perceptions of suffering) it also includes structures and processes (such as 24/7 support or loss of parental roles in the hospital setting) within the health care system that contain and drive these interactions. Whether it is the patient, family, or health care provider, each one could have his or her own intricate balance of needs, experiences, and sense of control. Since needs may be dualistic with ambivalence, and control oscillating between preservation and letting go, the blend between all factors (needs, experiences, and control) determines the extent of suffering at any point in time. It is postulated here that the measure of good death is inversely related to the perception of suffering. Given how its putative attributes are interdependent and fluid, it is posited that the quality of death itself is never constant, at least in and around the dying phase where this review is focused.

Discussion

This review adds to knowledge through synthesizing the scarce evidence related to good death in children with life-shortening illnesses. Previous reviews either drew heavily on adult literature⁵⁹ or focused on a specific group such as cancer.⁶⁰ Findings revealed a dynamic and multilayered ecosystem that incorporates different elements (control, needs, and experiences) and players (patients, family caregivers, and professionals), within a space bounded by the health care setting. It is dynamic in that the predominance of different elements could change over time, between and within themselves. Yet, they are also intimately layered, influencing how each element is expressed or experienced. In creating this concept map, the work of Corbin and Strauss on the trajectory framework was referenced.⁶¹ The diversity, multiplicity, and complexity of problems in chronic illness described in their trajectory framework appear to be an almost similar journey that evolves over time, involving interactions between various “actors” and different “schemes” (management goals and treatment plans) with associated trade-offs and impact, ultimately ending in death.

These concepts are similar to that of Hendrickson and McCorkle⁶⁰ who stated that a good death in a child dying of cancer is “the final social process that involves many perspectives and is the sum of the interactions of multiple dimensions and their influences.” The work of Hendrickson and McCorkle postulated that each stakeholder brings his or her own definition of a good death. In this review, a single unifying construct is displayed, supported by data that showed how different stakeholders and external factors (both situational and ecological) interact and influence each other. This draws from the philosophical perspective of critical hermeneutics,⁶² where an integrative approach that emphasized both subjective meanings for individual actors and social structures within a dynamic system is adopted. Not unlike what has been reported in adult literature,^63,64 dying children (and their caregivers) similarly face social pressures to fit the norm of a good death, such as open communication or acceptance of dying. That notwithstanding, departure from convention is common. For instance, the duality and ambivalence described earlier frequently define the unique experience. The implication for practice is a need for the professional caregiver to be free of assumptions, and to explore in-depth what may appear to be opposing or shifting positions.

Its methodological design is one strength of this review. The protocol by Whittemore and Knafl¹⁷ facilitated identification of universal concepts from heterogeneous data. Following a stepwise approach that is outlined a priori, rigor is preserved and bias minimized.^18,65 The quality of all 24 studies was appraised to be above average, and all were found to be relevant. A good spread of literature across countries, settings, and diagnoses was reviewed. Of the 12 studies (half of total) that sampled patients with noncancer conditions, eight covered diagnoses across all categories (one to four) in Together for Short Lives' typologies of life-limiting conditions.⁶⁶ Different stakeholders, including siblings, were also represented.

Nevertheless, there are several limitations. Only one study reflected the child's perspective (single-person case study). Six studies^{30,31,37,44,45,56} recruited respondents whose children had died more than six years before, with risks of recall bias and perspectives that could have changed over time. The sampling frame had restricted articles to only those published in peer-reviewed journals. Sociocultural attitudes or values did not surface as contingent factors. Finally, the impact from location of care and death, or support from palliative care, was also not evaluated. These present research priorities in future research.

Conclusion

An integrative conceptual framework to the holistic and contextualized understanding of a good death in children with life-shortening illnesses is presented. The “sphere of influence” model should be verified and strengthened in future research. A study design that accommodates the experiences of multiple stakeholders and myriad influences within a dying child's ecosystem would need to be conceived. Nevertheless, preliminary ideas shared here can immediately inform practice and even policy. For example, to appreciate why caregivers suddenly change decisions to start aggressive life-sustaining treatment as their sick child is dying despite a prior do-not-resuscitate order; and at the systems level, shifting the locus of control back to parental caregivers within a family-centered model of care could mitigate the perception of suffering among stakeholders as a seriously ill child dies.

Footnotes

Author Disclosure Statement

The authors do not have potential conflicts of interest, including relevant financial interests, activities, relationships, and affiliations related to this article.

References

Friebert

, Williams

: NHPCO's Facts and Figures: Pediatric palliative and Hospice Care in America. National Hospice and Palliative Care Organization, Alexandria, VA: 2015.

Bluebond-Langner

, Beecham

, Candy

, et al.: Preferred place of death for children and young people with life-limiting and life-threatening conditions: A systematic review of the literature and recommendations for future inquiry and policy. Palliat Med, 2013; 27:705–713.

Kaye

, Rubenstein

, Levine

, et al.: Pediatric palliative care in the community. CA Cancer J Clin, 2015; 65:315–333.

Feudtner

, Womer

, Augustin

, et al.: Pediatric palliative care programs in children's hospitals: A cross-sectional national survey. Pediatrics, 2013; 132:1063–1070.

Widger

, Davies

, Rapoport

, et al.: Pediatric palliative care in Canada in 2012: A cross-sectional descriptive study. CMAJ Open, 2016; 4:E562.

Feudtner

, Morrison

: The darkening veil of “do everything.”. Arch Pediatr Adolesc Med, 2012; 166:694–695.

Wolff

, Browne

: Organizing end of life care: Parallel planning. Paediatr Child Health, 2011; 21:378–384.

Gupta

, Harrop

, Lapwood

, Shefler

: Journey from pediatric intensive care to palliative care. J Palliat Med, 2013; 16:397–401.

Steinhauser

, Clipp

, McNeilly

, et al.: In search of a good death: Observations of patients, families, and providers. Ann Intern Med, 2000; 132:825–832.

10.

Kehl

: Moving toward peace: An analysis of the concept of a good death. Am J Hosp Palliat Med, 2006; 23:277–286.

11.

Granda-Cameron

, Houldin

: Concept analysis of good death in terminally ill patients. Am J Hosp Palliat Med, 2012; 29:632–639.

12.

Payne

, Langley-Evans

, Hillier

: Perceptions of a'good'death: A comparative study of the views of hospice staff and patients. Palliat Med, 1996; 10:307–312.

13.

Hughes

, Schumacher

, Jacobs-Lawson

, Arnold

: Confronting death: Perceptions of a good death in adults with lung cancer. Am J Hosp Palliat Med, 2008; 25:39–44.

14.

Gott

, Small

, Barnes

, et al.: Older people's views of a good death in heart failure: Implications for palliative care provision. Soc Sci Med, 2008; 67:1113–1121.

15.

Vig

, Davenport

, Pearlman

: Good deaths, bad deaths, and preferences for the end of life: A qualitative study of geriatric outpatients. J Am Geriatr Soc, 2002; 50:1541–1548.

16.

McNamara

: Good enough death: Autonomy and choice in Australian palliative care. Soc Sci Med, 2004; 58:929–938.

17.

Whittemore

, Knafl

: The integrative review: Updated methodology. J Adv Nurs, 2005; 52:546–553.

18.

Welstand

, Carson

, Rutherford

: Living with heart failure: An integrative review. Int J Nurs Stud, 2009; 46:1374–1385.

19.

Virdun

, Brown

, Phillips

, et al.: Elements of optimal paediatric palliative care for children and young people: An integrative review using a systematic approach. Collegian, 2015; 22:421–431.

20.

Porter

: Social Theory and Nursing Practice. Macmillan International Higher Education, London: 1998.

21.

Mingers

: Real-izing information systems: Critical realism as an underpinning philosophy for information systems. Inform Organ, 2004; 14:87–103.

22.

Tong

, Flemming

, McInnes

, et al.: Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Med Res Methodol, 2012; 12:181.

23.

Kristjanson

: Guidelines for a Palliative Approach in Residential Aged Care. Canberra, Australia: Australian Government Department of Health and Ageing, 2006.

24.

Collaboration

: Cochrane Reviewers' Handbook 4.2.2. 2002; from The Cochrane Collaboration Website. www.cochrane.dk/cochrane/handbook/hbook.htm. (Last Accessed August 15, 2002).

25.

Collaboration C: Campbell Collaboration Guidelines. 2002; from the Campbell Collaboration. www.campbellcollaboration.org/Fralibrary.html (Last Accessed August 15, 2002).

26.

Ross

, Estabrooks

: Sources of information used by nurses to inform practice: An integrative review. Int J Nurs Stud, 2008; 45:954–970.

27.

Miles

, Huberman

: Qualitative Data Analysis: An Expanded Sourcebook. Sage, Thousand Oaks, CA: 1994.

28.

Quinn

: Qualitative Research and Evaluation Methods. California EU: Sage Publications, Inc., 2002.

29.

Balkin

, Wolfe

, Ziniel

, et al.: Physician and parent perceptions of prognosis and end-of-life experience in children with advanced heart disease. J Palliat Med, 2015; 18:318–323.

30.

Björk

, Sundler

, Hallström

, Hammarlund

: Like being covered in a wet and dark blanket–Parents' lived experiences of losing a child to cancer. Eur J Oncol Nurs, 2016; 25:40–45.

31.

Cataudella

, Zelcer

: Psychological experiences of children with brain tumors at end of life: Parental perspectives. J Palliat Med, 2012; 15:1191–1197.

32.

Davies

, Deveau

, DeVeber

, et al.: Experiences of mothers in five countries whose child died of cancer. Cancer Nurs, 1998; 21:301–311.

33.

Davies

: Mothers' stories of loss: Their need to be with their dying child and their child's body after death. J Child Health Care, 2005; 9:288–300.

34.

Eskola

, Bergstraesser

, Zimmermann

, Cignacco

: Maintaining family life balance while facing a child's imminent death—A mixed methods study. J Adv Nurs, 2017; 73:2462–2472.

35.

Flavelle

: Experience of an adolescent living with and dying of cancer. Arch Pediatr Adolesc Med, 2011; 165:28–32.

36.

Granek

, Bartels

, Scheinemann

, Barrera

: Challenging patient deaths in pediatric oncology. Support Care Cancer, 2015; 23:2349–2356.

37.

Higgs

, McClaren

, Sahhar

MAR

, et al.: ‘A short time but a lovely little short time’: Bereaved parents' experiences of having a child with spinal muscular atrophy type 1. J Paediatr Child Health, 2016; 52:40–46.

38.

James

, Johnson

: The needs of parents of pediatric oncology patients during the palliative care phase. J Pediatr Oncol Nurs, 1997; 14:83–95.

39.

Kars

, Grypdonck

MHF

, de Korte-Verhoef

, et al.: Parental experience at the end-of-life in children with cancer: ‘Preservation’ and ‘letting go’ in relation to loss. Support Care Cancer, 2011; 19:27–35.

40.

Kars

, Grypdonck

MHF

, van Delden

JJM

: Being a parent of a child with cancer throughout the end-of-life course. Oncol Nurs Forum, 2011; 38:416–416.

41.

Lamiani

, Giannini

, Fossati

, et al.: Parental experience of end-of life care in the pediatric intensive care unit. Minerva Anestesiol, 2013; 79:1334–1343.

42.

Lan

, Yun

: Parents' perspectives on the important aspects of care in children dying from life limiting conditions: A qualitative study. Med J Malays, 2015; 70:295–299.

43.

Latha

, Scott

, Kumar

, et al.: Parent's Perspectives on the End-of-life Care of their Child with Cancer: Indian Perspective. Indian J Palliat Care, 2016; 22:317–325.

44.

Lovgren

, Jalmsell

, Wallin

, et al.: Siblings' experiences of their brother's or sister's cancer death: A nationwide follow-up 2–9 years later. Psycho-Oncology, 2016; 25:435–440.

45.

Lovgren

, Sejersen

, Kreicbergs

: Parents' experiences and wishes at end of life in children with spinal muscular atrophy types I and II. J Pediatr, 2016; 175:201–205.

46.

McConnell

, Porter

: The experience of providing end of life care at a children's hospice: A qualitative study. BMC Palliat Care, 2017; 16:15.

47.

Midson

, Carter

: Addressing end of life care issues in a tertiary treatment centre: Lessons learned from surveying parents' experiences. J Child Health Care, 2010; 14:52–66.

48.

Muskat

, Brownstone

, Greenblatt

: The experiences of pediatric social workers providing end-of-life care. Social Work Health Care, 2017; 56:505–523.

49.

Nafratilova

, Allenidekania

, Wanda

: Still hoping for a miracle: Parents' experiences in caring for their child with cancer under palliative care. Indian J Palliat Care, 2018; 24:127.

50.

Price

, Jordan

, Prior

, Parkes

: Living through the death of a child: A qualitative study of bereaved parents' experiences. Int J Nurs Stud, 2011; 48:1384–1392.

51.

Price

, Jordan

, Prior

: A consensus for change: Parent and professional perspectives on care for children at the end-of-life. Issues Compr Pediatr Nurs, 2013; 36:70–87.

52.

Eaton Russell

, Widger

, Beaune

, et al.: Siblings' voices: A prospective investigation of experiences with a dying child. Death Stud, 2018; 42:184–194.

53.

Suryani

, Allenidekania

, Rachmawati

: Phenomenology study on nurses' experiences in understanding the comfort of children at the end-of-life. Indian J Palliat Care, 2018; 24:162.

54.

Vickers

, Carlisle

: Choices and control: Parental experiences in pediatric terminal home care. J Pediatr Oncol Nurs, 2000; 17:12–21.

55.

von Lützau

, Otto

, Hechler

, et al.: Children dying from cancer: Parents' perspectives on symptoms, quality of life, characteristics of death, and end-of-life decisions. J Palliat Care, 2012; 28:274–281.

56.

Zelcer

, Cataudella

, Cairney

AEL

, Bannister

: Palliative Care of Children With Brain Tumors A Parental Perspective. Arch Pediatr Adolesc Med, 2010; 164:225–230.

57.

Zimmermann

, Bergstraesser

, Engberg

, et al.: When parents face the death of their child: A nationwide cross-sectional survey of parental perspectives on their child's end-of life care. BMC Palliat Care, 2016; 15:30–30.

58.

Schut

, Henk: The dual process model of coping with bereavement: Rationale and description. Death Stud, 1999; 23:197–224.

59.

Welch

: Can the death of a child be good?. J Pediatr Nurs, 2008; 23:120–125.

60.

Hendrickson

, McCorkle

: A dimensional analysis of the concept: Good death of a child with cancer. J Pediatr Oncol Nurs, 2008; 25:127–138.

61.

Corbin

, Strauss

: A nursing model for chronic illness management based upon the trajectory framework. Sch Inq Nurs Pract, 1991; 5:155–174.

62.

Myers

: Dialectical hermeneutics: A theoretical framework for the implementation of information systems. Inf Syst J, 1995; 5:51–70.

63.

Hart

, Sainsbury

, Short

: Whose dying? A sociological critique of the'good death'. Mortality, 1998; 3:65–77.

64.

Long

: Negotiating the “good death”: Japanese ambivalence about new ways to die. Ethnology, 2001:271–289.

65.

Weaver

, Heinze

, Bell

, et al.: Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review. Palliat Med, 2016; 30:212–223.

66.

Widdas

, McNamara

, Edwards

: A Core Care Pathway for Children with Life-Limiting and Life-Threatening Conditions. Bristol: Together for Short Lives, 2013.

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