Value-Based Factors Contributing to End-of-Life Decision-Making in a Pediatric Intensive Care Unit

Abstract

Background:

Although the pediatric intensive care unit (PICU) is associated with life-prolonging therapies, greater than 80% of families elect to forego this treatment within 24 hours of a child’s death. The value-based factors that influence this decision remain unclear.

Objective:

To contextualize elements of decision-making when a child’s family declines cardiopulmonary resuscitation (CPR), using holistic values and ethical principles and standards as a framework.

Design:

A complementary qualitative analysis of mixed-methods data collected retrospectively from the electronic medical record.

Setting/Participants:

The PICU of a Midwestern U.S. quaternary pediatric hospital. Participants were family decision-makers and medical providers of 19 purposefully selected children and adolescents who died after 24 hours in the PICU from 2013 to 2022.

Measurements:

We utilized thematic analysis to inductively identify themes contextualizing elements of end-of-life decision-making during the child’s terminal PICU admission. Narrative documentation in PICU and pediatric palliative care (PPC) medical progress notes was analyzed by three coders. Emergent themes were defined, consolidated, and discussed until achieving consensus.

Results:

We present Factors Affecting Decision-Making: Sources of family support, Personal values and conflict, Spiritual beliefs and values, Ethical values and standards, and Rhetoric/Language. The final theme includes idioms, accepted and unaccepted terminology, and the use of interpreters.

Conclusions:

Psychosocial, ethical, and spiritual factors may impact a child’s or family’s decision to forego high-intensity care like CPR at the child’s end of life. Providers should invite consideration of value-based factors when guiding family decision-making, which may be further facilitated by consulting PPC, patient advocacy, and/or ethics.

Keywords

cardiopulmonary resuscitation critical care end-of-life care decision-making palliative care

Key Message

In this single-site retrospective thematic analysis of medical record narratives of children who died in the PICU, we identified five essential factors that emerged from our qualitative analysis, including Sources of family support, Personal values and conflict, Spiritual beliefs and values, Ethical values and standards, and Rhetoric/Language.

Introduction

Of the 9000 deaths in United States pediatric intensive care units (PICUs) reported to the Virtual Pediatric Systems (VPS) registry from 2013 to 2022, 85% occurred with “limitations” of end-of-life (EOL) care, despite the perception that PICUs default to performing all life-sustaining measures.^1,2 VPS defines this EOL circumstance as having one or more of altered code status, limitation or non-escalation of care, and discontinuation of no-longer beneficial life-sustaining therapies. Under these circumstances, patients may experience EOL without high-intensity life-sustaining treatments, including CPR. Bedside and family caregivers have attributed a child’s suffering at EOL to these measures,^3–6 though families may be less likely to perceive suffering due to high-intensity EOL care than providers.^7,8

The likelihood of foregoing CPR in the final 24 hours of life (terminal CPR, tCPR) increases with exposure to pediatric palliative care (PPC), a subspecialty service that aims to reduce suffering and improve quality of life for children and families with life-threatening or life-altering conditions.^9–15 PICU providers may exercise primary PPC skills as they guide families through EOL decision-making in environments where PPC is a scarce resource.^16,17 Once goals of care (GOC) have been identified and clarified, PPC offers guidance and support for families and PICU providers to pursue goal-concordant treatment options.¹⁵ For some families, goal-concordant care does not include tCPR or other high-intensity EOL care measures.^3,18

Previous qualitative investigations have explored EOL decision-making in pediatrics, but findings often synthesize multiple data sources or recollections of bereaved family decision-makers.^19,20 These reports describe the experience of decision-making as including conflict, emotional responses, sources of support, communication, and the influence of previous knowledge/experiences among bereaved families and health care professionals.^6,21–24 Other studies have conceptualized health care decision-making using frameworks such as shared decision-making or Beauchamp and Childress’s ethical principles.^25–27 Both providers and family decision-makers may rely on ethical principles and standards (e.g., the Best Interest Standard), moral and legal rights, religious views, and values.^23,28–31 Provider rhetoric and communication also influence decision-making.^22,23

Although previous studies quantify factors that influence EOL decision-making in the PICU,^{10,12–14,32} these investigations lack a qualitative element to contextualize the associations observed between quantitative factors, such as reduction of tCPR and PPC exposure. Approximately 85% of families choose limitations of high-intensity EOL care; however, tCPR is the default during cardiac arrest, and the decision to forego this potentially lifesaving and/or harmful care merits specific investigation. The study’s purpose is to understand value-based decisions to forego tCPR in the PICU and the ethical basis on which they were made, contextualizing elements of decision-making when a child’s family declines tCPR in the PICU.

Methods

The primary retrospective mixed-methods study (Modifications of End-of-Life Care in the Pediatric Intensive Care Unit; IRB 2023-081; approved June 22, 2023) was carried out at a midwestern 467-bed quaternary pediatric hospital system with a waiver of informed consent and HIPAA authorization. We utilized the Consolidated Criteria for Reporting Qualitative Studies guidelines.³³ Primary data sources were PICU and PPC clinical progress notes during the terminal admission, and quantifiable data extracted from the electronic health record and VPS registry. Although PICU and PPC documentation templates differed in structure, both included narrative components, which were analyzed together and provided the most significant source of data.

Patient selection

Eligible patients (hereafter, “children”) died in the PICU ≥24 hours post-admission without receiving tCPR from 2013 through 2022. Consistent with qualitative methodology, purposeful sampling captured representative experiences of the larger population with targeted oversampling of minority groups to ensure inclusion.³⁴ Given the iterative nature of qualitative research, two phases of sampling occurred as researchers discerned the sample size needed to verify the findings beyond initial saturation. Eligible participants were sorted by diagnostic category, payor type, race, and ethnicity; the first eight participants with unique combinations of these characteristics were selected. The next 11 participants represented unique combinations of the same four categories and disability severity, PICU length of stay, urban/rural county, PPC exposure, age, brain death, legal guardian type, and religious affiliation.

Analysis

We conducted an iterative, inductive, constructivist thematic analysis of PICU and PPC progress notes to identify themes contextualizing decision-making (flow diagram; Fig. 1).³⁵ One subtheme, ethical standards and principles, included terms from literature that best captured the meaning of the groupings, determined by consensus among the coders.²⁵ The coding team (GJR, DHG, JMA), consisting of male and female qualitative researchers (DMin and PhD) and one female research coordinator (MPH, DO Candidate), who made field notes and practiced reflexivity during and/or after weekly coding sessions.³⁶ Determination of saturation followed Guest and colleagues’ methods.³⁷ Although saturation was achieved after six participants, coding continued to 19 participants to improve representativeness. NVivo 12.0Pro software was used to organize the data.³⁸

FIG. 1.

Flow diagram of qualitative analysis procedure with saturation calculation following the method of Guest and colleagues (38).

Results

A total of 234 deaths 24 hours post-PICU admission occurred during the study period, with 80 (34%) having any pre-admission PPC exposure, 230 (98%) having inpatient PPC consult, and 216 (92%) foregoing tCPR.³⁹ From the purposeful sample of 19 children, we identified Factors Affecting Decision-Making as perceived and documented by PICU and PPC providers caring for those who declined tCPR. We present descriptive statistics in Table 1. The themes (Table 2) detail the extent to which PICU and PPC providers considered factors beyond diagnostic and prognostic information.

Table 1.

Qualitative Subsample, N = 19

Descriptive factor	n
Sex assigned at birth
Female	7
Male	12
Disability at baseline^a
Yes	13
Interpreter required
Yes	2
Age in months
Median (min–max)	100 (0–260)
Decision maker
Single parent	6
Self with power of attorney/surrogate	2
Grandparents	1
Biological mother and father	7
Government agency	1
Other parent dyad	2
Primary PICU diagnosis category
Cardiovascular	4
Infectious	1
Neurological	3
Oncologic	2
Poisonings & adverse effects (includes drownings)	1
Respiratory/Otolaryngologic	3
Trauma	3
Other	2
Inpatient pediatric palliative care consult
Yes	18
No	1
Pre-admission pediatric palliative care exposure
None	8
Previous encounter in six months prior to admission	9
Remote involvement (>6 months)	2
Home environment
Rural	5
Urban	14
Family-reported religious affiliation (maximized granularity)
Amish	2
Apostolic Christian	1
Baptist	3
Catholic	2
“Christian”	3
Christian background	1
Non-denominational	1
Missing	6

Disability defined as Pediatric Overall Performance Category and Pediatric Cerebral Performance Category summed scores ≥3.

Table 2.

Factors Affecting Decision-Making

Theme	Subtheme	Exemplar quote
Sources of family support		Limited social support. Does not speak to her brother. Only support identified by mom is her sister.Mother is supported by her parents, her close friend [name], and her pastor. She has declined offers to ask them to come to hospital at this time saying she prefers to be alone.
Personal values and conflict
	Hope	We discussed hope for a miracle while focusing on reality of gravity of patient’s medical condition.Adoptive mother expressed her personal struggle with knowing patient’s wishes but worried about making a decision to move forward to allow her death noting hope for a miracle. Sister shared again that everything happens in God’s time.
	Peace	Mother expressed that she was fearful and “not at peace” when he was struggling and potentially nearing his end of life yesterday. She said “I thought I would feel better about that but all I could think was don’t go.”She died peacefully with her parents at her side at 1420.Mother and Father expressed that they feel that patient is suffering, and they have a gut feeling she will not survive this illness. Mother stated that she wished Patient had died peacefully at home prior to admission.
	Internal conflict/guilt	Mother explains that she feels conflicted in trying to process and come to terms with everything that has occurred and the medical information that has been provided to them, and her role of providing family and friends with updates.Mom reports that she has had two other children die previously. She expresses significant guilt and distress related to having Patient receive the surgery.
Spiritual beliefs and values		Mother maintains a strong faith in God and feels that we need to give patient more time to see if he can heal. I discussed with the family that while we are joining their hopes for a miracle, Patient is gravely ill and requiring a significant amount of life support at this time, and that his status is extremely tenuous.
Ethical values and standards
	Best interests	Grandmother stated that she did not want Patient to suffer and did not feel chest compressions (CPR) would not be in his best interest and would likely leave Patient worse off medically. Grandfather, however, felt that he could not make the decision
	Non-maleficence	Mother expressing feeling guilt about “wanting him to go faster, I was fighting for him to be alive for three weeks and now I am asking you to let him die faster.” She expressed having difficulty watching him suffer.My next discussion with the family was the result of the family deciding they wanted Patient to stop suffering and have withdrawal of life sustaining measures. [Provider] was present from palliative care and informed me of the family’s wishes.
	Beneficence	Parents were agreeable to this and said they are trying to balance starting medications or doing interventions to patient that might be painful or expensive and ultimately not helpful.Father stated that he is unsure of what is best to do and that all of these options do not seem like good options, for which we empathized and agreed.
	Justice	They are also adamant that she be treated just “like any other kid” and don’t want providers/”the system” to treat her differently or give up on her because she has an underlying difficult diagnosis.Her mother, grandmother, and two children (Patient’s twin and her three year old daughter) are visiting in the room with her today. She reports they are supporting her well, but she doesn’t want to burden them any more than necessary.
Rhetoric and language
	Use of adjectives and adverbs	His prognosis for survival with meaningful neurological recovery is very, very poor.His family was appropriately devastated during the conversation and stated they would like some time to process the CT results.
	Use of idioms	…and most likely will result in a vegetative state based on current neurological assessment.Mother stated that “I want to pull the plug.”
	Accepted or “best practice” terminology	Family expressing wish to allow patient her natural death in the face of suffering and likely irrecoverable illness.Provide comfort care by all means necessary in cooperation with our palliative care services.
	Unaccepted, questionable, or controversial terminology	They asked multiple questions about how her trajectory could unfold, what end of life would look like, and how we would make sure she is comfortable “without killing her.”
	Use of interpreters	Social service consulted for resources and support and Palliative Care consulted for family support. Mother needs interpreter.

Sources of family support

Providers documented people (family, community members, and professionals) providing support for the child and their family, although some also included factors such as faith, discussion, and sleep. Some families reported having little or no social support, and others expressed a preference for time alone: “Offered again to call family, her pastor, or hospital chaplain. Mother affirms she would like to be alone at this time.” PICU providers may have consulted PPC for family support, but PPC’s role did not emerge in further detail within this theme. Documentation consisted of both free text and formulaic lists.

Personal values and conflict

We identified two personal values: hope and peace. Hope was described in the context of families being hopeful or expressing hope for a miracle despite being aware of the possibility, if not certainty, of their child’s impending death: “Very aware that patient will die at some point … but is also hopeful that patient will get back to the happy girl she was before the Christmas holidays.” While hope might be tied to patients’ and families’ spiritual, religious, and cultural values, it was more commonly described as a state of being (i.e., being hopeful) or as a want or desire (i.e., hoping for) that was not tied to any set of norms. In some cases, hope and peace were interrelated, i.e., the hope for a peaceful death and the fear that peace could not be achieved (i.e., loss of hope). Providers also described peace at the child’s EOL: “Patient died peacefully in her mother’s arms.”

Value conflicts as reported by providers reflected the emotional struggles families experienced in the decision-making process. Some families questioned prior events (“Mother questioned whether things would have been different if Patient had come to [hospital] sooner, processing the events and expressing concerns about what could have been done differently”) and expressed guilt when wanting their child’s life to end sooner to alleviate suffering.

Spiritual beliefs and values

We identified indications of spiritual/religious beliefs and practices in the context of coping and decision-making. PPC providers assessed spiritual values while connecting families to chaplaincy support. When discussing decisions, families referenced events happening “in God’s time,” even avoiding decision-making: “Grandmother and Grandfather, however, did not want to make the decision to stop no longer beneficial life-sustaining therapies…as ‘did not want to play God.’” At the child’s EOL, rituals such as baptism and prayer invoked spiritual beliefs and values: “Mother also requested that [church] be contacted as she wishes for the same priest who baptized the patient to be present for last rights[sic].”

Ethical values and standards

Four ethical concepts emerged from the data, including best interests, beneficence, non-maleficence, and justice. Providers and families often referenced more than one concept, whether directly (e.g. “Chest compressions [CPR] would not be in his best interest,”) or indirectly (e.g. “avoidance of suffering” becomes non-maleficence), reflecting a multifactorial approach to evaluate and justify decisions in accordance with ethical concepts. Here, we detail the four concepts with the caveat that families and providers may call upon many other ethical frames of reference.⁴⁰

Often, providers explicitly described the child’s best interests, including direct quotations of a family decision-maker’s reference to this standard. In medical ethics, a surrogate decision-maker (e.g., parent or health care provider) considers the interests of persons whose capacities might limit decision-making due to age, physical and/or mental health status.³¹ In these cases, decisions are made by what the surrogate decision-maker or provider deems as necessary or good for the patient, sometimes in consultation with trusted others, including the PPC team. For example, “The attending team feels it is in her best interest to have a PICC placed and initiation of epinephrine to improve [perfusion]. Parents wish to discuss this with the PPC team and [have] further [GOC] conversations prior to initiation of these therapies.”

Non-maleficence guides decisions that aim to prevent, minimize, or alleviate harms or risks.²⁵ PICU and PPC provider notes addressed shared values among providers and families in preventing or minimizing patient suffering. Although harm cannot always be avoided in clinical settings, the theme of suffering and acting in ways that avoid unnecessary suffering, including the removal of life-sustaining therapy or forgoing tCPR to allow a natural death, was significant in EOL discussions; “Foster mother clearly stated that they would not want the patient to suffer and only want him to be comfortable—they agree they do not want him to live connected to machines…[biological] mother indicated agreement and adds ‘I don’t want him to suffer.’”

Under the principle of beneficence and the promotion of good for patient care, there is clear evidence of professionals weighing the benefits of treatments and interventions against potential harms. Medical notes reveal transparency in family communication about treatment options and benefits through shared decision-making; “She was then intubated after discussion of risks and benefits of intubation with the family, including the concern that she may not be able to wean from mechanical ventilation.”

Central to justice, some families desired fairness and equal opportunities for their children while careful not to distribute burdens to others. They did not want their children to be defined by their complex, or terminal, illness; “They are also adamant that she be treated just “like any other kid” and don’t want providers/ “the system’ to treat her differently or give up on her because she has an underlying difficult diagnosis.”

Rhetoric/Language

Analysis revealed the use of adjectives and adverbs to emphasize the gravity of clinical events (“her skull is badly damaged”), to qualify the progression of the patient’s disease or disability (“terrifically impaired neurological function”), and the quality or stages of dying (“the patient was not doing well and that he might not make it”). Providers used idioms in the clinical narrative and family quotations (“pulling the plug”). When describing their own communication with families about EOL, some providers used accepted or “best practice” terminology, which is specific and respectful of human dignity, to describe the patient as “dying” or to indicate a lack of treatments to cure or assist with recovery: “I explained to mom that the patient was actively dying and that there were no interventions that would be helpful in providing a meaningful chance of recovery.” Alternatively, from being in a “vegetative state” to descriptions of medical “futility,” some providers used unaccepted, questionable, or controversial terminology to describe patients, their diagnoses/prognoses, and EOL experiences. The use of interpreters adds layers to EOL communication and experiences: “Mother requested to dress the patient in a white outfit (provided by translator[sic]) prior to extubation…Patient was placed in her mother’s arms…in a rocking chair.”

Discussion

Each of the identified five subthemes offers insight into not only patient and family values but also how these values are documented, understood, and incorporated into decision-making in a PICU setting through the lens of PICU and PPC providers. Akin to the 2012 findings by Carroll and colleagues, factors affecting decision-making are based on personal values and beliefs, consistent with the holistic model of PPC that embodies and incorporates personal, spiritual, ethical, and social values into direct patient care, provider communication, and team-based (patient, family, and providers) support.^9,23 PICU providers may address these factors when exercising primary PPC skills and in collaboration with subspecialty PPC.¹⁷ The resulting model (Fig. 2) may guide decision-making with families, offering an in-depth perspective on the ethical and psychosocial considerations identified in previous reports.^19,23 Integrating this model into PICU provider training, through simulation and debriefing, may encourage a more seamless collaboration between PPC and PICU providers having both shared and separate interactions with families at various points in the decision-making process. We include specific recommendations derived from these results, including the assessment of sources of support, attention to interpretation or judgment of values, and consideration for the connotation of language and rhetoric.

FIG. 2.

Model depicting the relationships between themes of Factors Affecting Decision-Making, and subthemes.

By identifying a family’s sources of psychosocial, ethical, and spiritual support, providers can calibrate their time and effort while also identifying additional resources (e.g., personnel) needed to maximize caregiving. Both PICU and PPC providers documented assessment and fulfillment of family support in the form of family or friends, trusted providers including PPC, and spiritual values or beliefs.^21,22,41 Although we lack caregiver self-report data to evaluate its value, our findings demonstrate the importance of offering chaplaincy, PPC consultation, ethics consultation, social work, and interprofessional resources for PICU decision-makers.^19,41 PPC consultation can begin the process of deciding to pursue or forego high-intensity EOL care before the terminal PICU admission, with clarifying goals expected to improve the likelihood of providing goal-concordant care at EOL.² The impact of social isolation during terminal PICU admission was beyond the scope of our current work; however, our findings, taken in concert with the works of others, suggest the need for family members, friends, and others to support decision makers.^19,41

The strong presence of models and concepts commonly taught in medical education (e.g., the Biopsychosocial model, Beauchamp and Childress’s principles) may reflect provider bias in the results, especially when we note that saturation was achieved after only six participants.^25,42 We recommend consideration of the following to assist with addressing the complexity of EOL decision-making in the PICU. Consulting a medical ethicist would likely diversify the ethical frame of reference and enhance person-centered decision-making.⁴⁰ Incorporating interdisciplinary/external support (e.g., chaplain, ethicist, trusted community elder) throughout decision-making may invite consideration of family-reported values beyond those presented and documented by medical providers. Family decision-makers identify physicians as their primary decision-making support in the PICU, but families and providers may have different perceptions of beneficial and non-beneficial care at a child’s EOL.^3,7,8,19 Providers should be mindful of bias introduced by previous experience, given that they approach decision-making with an amalgam of EOL experiences more numerous than that of the family. Similarly, we identified ethical concepts documented in provider notes, both in the form of provider summation and direct quotation. When interpreting or “diagnosing” a family’s values without directly quoting, the documenting provider risks misinterpretation or misattribution by subsequent providers. Direct quotations may reduce the documentation of ethical principles and standards that seem to be in the provider’s “voice.”

As providers attend to the psychosocial, spiritual, and ethical considerations discussed here, they should further consider the connotation of language and rhetoric. The use of adjectives and adverbs, idioms, and “unaccepted’ terminology connotes meaning that may obscure key information. For example, qualifying recovery as “meaningful” can be misleading if providers fail to understand how families attribute meaning to interventions, recovery, and dying. GOC conversations with the support and collaboration of PPC providers may clarify this meaning. Providers should use current language that does not objectify (e.g., equating a person to a “vegetable”) or lead to inaccurate assumptions (e.g,. describing care as “futile”) that the child will not receive further medical management. This and other studies serve as resources for accurate and person-centered language.^43–45

Limitations of this research include single-site analysis, which limits generalizability, lack of direct-report data from family decision-makers, and retrospective data collection limited to only those who declined tCPR. This retrospective qualitative analysis carries inherent sampling, interpretation, and confirmation biases. Coding past saturation to achieve a representative sample mitigated some threat of sampling bias. We attempted to mitigate interpretation and confirmation biases by utilizing a team of coders from allied health disciplines, practicing reflexivity, coding in groups, continuing analysis beyond saturation, seeking feedback, and maintaining a study journal. Despite the limitations, our study provides the foundation for future testing of the proposed model to guide interactions and further examine relationships, dialogue, and interpretations among providers and families. Future work ought to seek surviving family members’ direct report of factors affecting decision-making and assessment of collinearity between our themes; a combined model may be used to demonstrate consummate communication at EOL in the PICU. Other works might consider variation of Factors between cultures and the influence of health literacy.

Conclusion

The psychosocial, ethical, and spiritual factors of the terminal PICU experience highlight the engagement and humanity of professionals caring for children and families, which separate them from technicians chaperoning EOL. Although this analytic model may offer guidance for a humanistic approach, it should be tailored for each family, with involvement of additional resources (e.g., PPC, ethics committees) to support person-centered decision-making. This and other research about truly informed decision-making and its impact on goal-concordant care obligates health professionals to utilize essential tools to alleviate moral distress, trauma, decisional regret, burnout, and other sources of suffering among family decision-makers and the providers supporting them. We have an ethical obligation to translate the information we glean to meaningful outcomes for those we serve.

Authors’ Contributions

G.J.R. contributed to study design; data acquisition, analysis, and interpretation; and article drafting. D.H.G. contributed to study design, data analysis and interpretation, and critical review of the article. S.F. contributed to study conception, interpretation of data, and critical review of the article. M.L.F. contributed to study conception and design, interpretation of data, and critical review of the article. C.K.P.-G. contributed to interpretation of data and critical review of the article. J.M.A. contributed to study design, data analysis and interpretation, and article drafting.

Footnotes

Acknowledgments

The authors gratefully acknowledge the children and families who contributed their information for this analysis; and the interdisciplinary care teams who served them.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This research was funded internally by the investigators' departments.

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