The ethics of concurrent care for children: A social justice perspective

Abstract

Recent estimates indicate that over 40,000 children die annually in the United States and a majority have life-limiting conditions. Children at end of life require extensive healthcare resources, including multiple hospital readmissions and emergency room visits. Yet, many children still suffer from symptoms at end of life—including fatigue, pain, dyspnea, and anxiety—with less than 10% of these children utilizing hospice care services. A critical barrier to pediatric hospice use was the original federal regulations associated with the hospice care that required a diagnosis of 6 months to live and the discontinuation of all curative treatments. The Concurrent Care Provision of the United States’ Affordable Care Act eliminated the need to forgo curative therapies in order to enroll in hospice for children in Medicaid or Children’s Health Insurance Program. Concurrent care for children can help mitigate the tension families experience in choosing between essential forms of care, as well as contribute to improved end-of-life outcomes for the child and possibly bereavement outcomes for the family. Understanding concurrent care for children from a social justice perspective has important advocacy and research implications for hospice and palliative care clinicians providing care for children and their families. We apply Powers and Faden’s theory of social justice “as the moral foundation of public health and health policy” to the provision of concurrent care to children near end of life and families in the United States. The goals of applying this theory are to explore additional insights and perspectives into concurrent care policy may provide and to assess the usefulness of this theory when applied to end-of-life health policy. We argue that concurrent care policy is socially just since it has potential to promote well-being in vulnerable children and families and can limit the inequity children at end-of-life experience in access to high-quality hospice care.

Keywords

End-of-life issues ethics and children in care neonatal care palliative care pediatric practice policy

Introduction

Recent estimates determined that over 40,000 children die annually in the United States and a majority have a life-limiting health condition.¹ Cancer, chromosomal anomalies, and neurological conditions are often risk factors for pediatric death, even though there have been significant advances in medical technologies and treatments for these children.^1
–3 Children at end of life require extensive healthcare resource utilization often with multiple hospital readmissions and emergency room visits, with average economic impact of approximately US$80,000 per year per child.^4,5 Yet, many children still suffer from symptoms at end of life—such as fatigue, pain, dyspnea, anxiety, nausea and vomiting, constipation, pruritus, seizures, and loss of motor function—with less than 10% of these children utilizing hospice care services.^6
–8

A critical barrier to pediatric hospice use was the original federal regulations associated with hospice care that required a diagnosis of 6 months to live and the discontinuation of all curative treatments.⁹ These regulations often prompted discontinuation of treatment from their primary and specialist providers managing their illness care and placed children at risk for adverse end-of-life outcomes, including high symptom burden.⁷ In addition, families often felt compelled to decline hospice care if they lost services that may prolong the child’s life or assist in managing the illness, such as skilled nursing care in the home for upwards of 16 h daily. This “terrible choice” of parents to either continue treatments or enroll in hospice was eliminated with the 2010 Affordable Care Act (ACA).

Recent changes in Medicaid regulations enable pediatric patients and their families to opt for concurrent care—the continuation of life-prolonging therapies (e.g. chemotherapy, radiation, dialysis) while enrolled in hospice care.¹⁰ In 2010, the ACA included a provision, called the Concurrent Care for Children (ACA 2302), which eliminated the need to forgo curative therapies in order to enroll in hospice for children in Medicaid or Children’s Health Insurance Program (CHIP).^10,11 Concurrent care for children, as mandated in ACA, section 2302, can help mitigate the tension families experience in choosing between essential forms of care, as well as contribute to improved end-of-life outcomes. It represents an example of Medicaid/CHIP coverage expansion created to improve access to and utilization of healthcare services, while ultimately improving quality of care during end-of-life for children. Although implementation of the regulation has been slow among state agencies, clinicians, and families, concurrent care can be viewed as a socially just policy for children with life-limiting illnesses and their families. It allows children to garner a greater level of well-being through high-quality end-of-life care to manage distressing symptoms, allows families to enhance attachments and make decisions consistent with their family goals, and enhances respect for persons because it recognizes and attempts to mitigate the tension parents face when making end-of-life decisions that affect their entire family.^4,12,13

Understanding concurrent care for children from a social justice perspective has important advocacy and research implications for hospice and palliative care clinicians providing care for children and their families at end of life. Developing an ethical foundation for concurrent care for children may provide the moral and equitable justification needed to improve access to this care. Therefore, the purpose of this article is to conduct an analysis of concurrent care for children from a social justice perspective.

Ethical framework

We begin our discussion of the ethical framework informing our analysis by briefly describing important frameworks that preceded Powers and Faden’s theory of social justice. Rawls’ theory of justice is among the best known and describes a conceptualization of justice in modern liberal democracies. It stands in opposition to a utilitarian view of justice that conceptualizes actions or positions that provide the greatest good, or utility, to the greatest number of people as just. Theorists supporting a utilitarian view would be less concerned with equality in rights or opportunities. A Rawlsian theory of justice, on the other hand, is guided by ideas of social cooperation and equality. Two key principles guide how ideas of justice as fairness are applied to institutions. First, all citizens in a society have the same basic rights and opportunities. Second, inequality in primary goods is only permissible if all reasonable citizens have access to the same opportunities for increased benefit or burden and if those citizens who are worst-off find their lives improved by the inequality. A Rawlsian theory of justice is described as an ideal theory because it assumes citizen and societal compliance with the guiding principles. In addition, a Rawlsian theory is focused on establishing a framework for how institutions and societies make decisions to maintain and promote equality for the worst-off in society; it provides a backdrop against which institutions consider and do the work of justice.¹⁴ ^– 17

Powers and Faden offer a conceptualization of social justice that diverges from a Rawlsian theory of justice in three ways. First, Powers and Faden’s theory of justice does not start with the assumption of institutional and societal compliance with a set of distributive principles. Powers and Faden are less interested in distributive principles from which the ends have only been considered in the abstract than the outcomes of the theory’s real-world application. Second, Powers and Faden emphasize the impact of inequalities in different spheres of life, as well as the cumulative impact of such inequalities interacting with one another. For example, they consider the intersection of social determinants; inequality in health, economic opportunity, and safety are burdensome when considered individually, but their impact is multiplied and cumulative when one individual or family experiences all three simultaneously. This emphasis demonstrates how their theory considers both the institutional actions and the lived experience of inequality. Finally, Powers and Faden suggest that justice is concerned with more than the distribution of primary goods. The job of justice, they suggest, is to secure a sufficient level of well-being across dimensions, such as reasoning, self-determination, attachment, personal security, respect, and health.¹⁸

Powers and Faden¹⁸ propose a definition and framework of social justice that considers a multifaceted approach for examining the impact of institutions and health policy on health and well-being. They situate an understanding of social justice within the social world and the complexity of individuals and institutions. This theory of social justice focuses on person-oriented ends that cross time, place, and context; these ends, or facets of well-being, include “respect of others, personal security, health, development of reasoning capacities and capacities for attachment to others, and the ability to determine for oneself some important aspects of one’s destiny (chapter 8, location 4294).”¹⁸ Each of these facets of well-being are vital to both a general conception of justice and a specific understanding of the relationships among justice, public health, and health policy. While distributive conceptions of social justice can apply in the context of families caring for children with incurable illnesses because extreme inequality can erode one’s standing as an equal participant within a democracy, some facets of well-being are “not simply securable by ensuring a just distribution of resources such as wealth and income.”^18,19

According to Powers,¹⁹ the “principles of social justice pertain to the norms, institutions and social arrangements under which the conditions for the fulfillment of human needs on an on-going basis are achieved” (p. 2967). Social injustice, then, refers to “states of inequality (differences in well-being, opportunity, and economic wealth) for which no one person can be held accountable” (p. 2967). Children at end-of-life, and their families, may experience inequality because of differences in well-being, opportunity, and economic wealth compared to similar children and families living without the looming threat of death. Because of the illness state, children’s well-being, time to enjoy childhood, grow, and develop into adulthood are different, minimized, and eliminated. Since the nature of losing a child is different than losing a beloved adult, bereaved parents and siblings may need different opportunities to achieve well-being and may exist in a state of social injustice. Attention to inequalities reflects concern for the well-being of others and espouses an everyday ethic of caring for fellow members of society.

Differential access to these opportunities because of health and social policy is amenable to action, and as such, understandings of normative levels of care are social constructions. The inaction or action of social structures and institutions is a backdrop against which policies take hold or are eliminated. Structures and institutions also influence the context within which families make decisions for their children and attempt to maintain family life and functioning. Social justice affects the basic building blocks of society and real-world processes; the prospects of individuals to develop, attain sense of well-being, determine their goals, and attempt to ameliorate their suffering are interconnected to this backdrop created by health and social policy and social structures.

Ethical analysis

We can examine the benefits, burdens, necessity, or luxury of concurrent care using a social justice lens. Two moral foundations have been described in relation to social justice and human rights: (1) maximizing welfare, and therefore health, for all, including balancing individual liberties with optimal health outcomes; (2) enacting a broader commitment that embeds this balance within a commitment to secure a sufficient level of health for all and to narrow inequalities.¹⁸

Powers and Faden describe social justice as a comprehensive means of promoting, and making achievable, well-being. They place a particular emphasis on making the well-being of children achievable because what occurs early on and throughout children’s early years can profoundly affect the adults they become. We would also argue that, in the case of children who are expected to die of their condition, what occurs early in their lives and early in the experiences of their illnesses affects how these children live their remaining years and how parents survive without their children in bereavement and beyond. Health policies that add quality to the child’s remaining years, that recognize the distressing nature of having to make end-of-life decisions for one’s child, and that acknowledge the impact of actions taken while a child is alive on the parents’ and family’s bereavement would meet the requirements of social justice according to Powers and Faden.

The necessity of well-being is rooted in social justice. Powers and Faden describe a six-dimension theory of well-being which argues institutions must provide a sufficient level of six basic determinants of well-being for every person: healthy life and life span in relation to the capacity and wealth of a society; personal security against violence; respect of self and others; ability to form and benefit from attachment to others (e.g. time to participate in childhood and experience family relationships); autonomy with respect to decisions affecting one’s own futures; and reasoning abilities.¹⁸ While Powers and Faden focus on the role of institutions and not relationships, it is worth using their framework to examine what the state and its institutions are to do regarding concurrent care.

Powers and Faden also argue that healthcare and overall well-being of children is vital and foundational to their development into adults who can experience respect of self and others, attachment, autonomy, and reasoning.²⁰ Thus, it is vital to attend to children’s health as a population and as individuals. While many of the children affected by concurrent care will not survive to adulthood, concurrent care is one mechanism by which affected children can live as much as possible with their remaining time, develop and deepen attachment relationships, and, for those able, to have a say in their care. In the following sections, we describe the benefits of concurrent care and make a case for its necessity; describe some of the burdens children, families, and clinicians face without such a policy; and describe good health, to the extent possible, as an important goal for children receiving hospice care.

Benefits

Sufficiency of well-being

Concurrent care is an avenue of social justice because it benefits children and families by providing a broader commitment to secure a sufficient level of health. Powers and Faden describe a sufficient level of health as one that allows an individual to achieve the highest level of well-being possible in a manner that is acceptable to the person. Concurrent care allows children to secure the highest level of achievable health and limits their suffering from physical, emotional, psychological, and spiritual symptoms. It also provides sufficient care to parents by not forcing them to make unthinkable decisions and live beyond their child with memories of poorly managed symptoms or unrelieved suffering.

Indeed, as Racine²¹ notes, the provision of primary healthcare to underserved children is an act of social justice. While he described provisions of primary care for impoverished children, children who are expected to die of their illnesses are underserved in that symptoms may not be well-managed, healthcare providers may not have training or experience caring for children and families during this sensitive time, and, despite the ripple and long-term effects of the death of a child on a family, limited research funds are appropriated for the care of children at end of life. Racine then considers what society owes children. He argues that good health and the means to attain it are vital because, without health, the utility of and ability to benefit from the other social goods is diminished. Social justice favors the redress of imbalances that affect child health because children often suffer through circumstances over which they have no control. Similarly, we argue children with life-threatening and life-limiting illnesses are owed a sufficient level of well-being, within their particular illness context, that includes adequate management of physical and psychological symptoms and the opportunity to enhance relationships and attachments with loved ones.

Justice

The role of justice is woven into healthcare discussions about allocation of healthcare resources, public health, and research ethics. For example, discussions around allocation of resources are often rooted in a medical paradigm and describe who should receive limited or expensive resources in the face of scarcity. A public health conception of justice considers how the risk of disease is spread over a population, both directly and indirectly. Conversely, Powers and Faden¹⁸ suggest an egalitarian justice that focuses on securing a basic level of well-being for all individuals, rooted in a broader concern for human welfare. They argue that the goal of social justice is an adequate level of well-being for all, noting “the job of justice is securing a sufficient level of each dimension [of well-being] for every person as much as possible (Chapter 8, location 4307).”¹⁹ A person’s potential and ability to achieve such potential are the work of justice. Considering pediatric hospice, Powers and Faden’s conception of social justice benefits children and families because it does not consider justice in separate spheres of well-being as competing against one another. A traditional conception of distributive justice may not consider the interacting and cumulative effects of inequality across the spheres of a child’s and family’s lives that limits their sufficiency of well-being. For example, a Rawlsian theory of justice might be more concerned with an equal distribution of the means to attain good health or quality healthcare, and less on the outcomes of health and healthcare. In addition, a traditional, distributive conception of justice may not consider the interaction of health and illness management, promotion of attachment relationships, and the cumulative benefits and burdens families experience in managing these multiple spheres of their lives. Yet, parents report that while their highest priority is ensuring their ill child feels loved, they enact and demonstrate this love through illness management, making informed healthcare decisions for their child, advocating for them with healthcare providers, and staying by their side.^22,23 Powers and Faden, although they focus on social institutions, recognize the interrelatedness of family members, the contingent nature of each member’s well-being in a family caring for an ill child, and the impact of healthcare providers and institutions on family well-being. Their view of justice acknowledges the abstract backdrop that a Rawlsian conception of justice provides to institutional and societal decision-making about distribution of primary goods, but then moves beyond this to consideration of the ends or outcomes of the distribution and a more concrete understanding of how distributive principles impede or promote achievement of a sufficient level of well-being.

Equity

Social justice is considered the moral foundation of public health and the ongoing tension between individual rights and social good occurs within a context of a broad commitment to secure the benefit of health for all.¹⁸ Equity, when considering pediatric hospice care, is getting the child and family the care that complements where they are on their journey. It provides an intensive level of care so that children can suffer less physically and emotionally, possibly live longer to achieve goals and spend time with loved ones, and achieve their greatest level of well-being while alive. By providing a mechanism for ill children to achieve a greater level of well-being, society also acknowledges and promotes the well-being of the family, who will live on without the child after death. This demonstrates respect for persons by providing a path for the child to potentially suffer less and have a longer life, but also respect for the parents in their role as protector, caregiver, decision-maker, and advocate.²⁴

Burdens

Inequity

We are called to recognize the burdens of inequity when viewing healthcare through a social injustice lens. As the World Health Organization (WHO) notes, “social injustice kills” (p. 26).²⁵ Children in need of hospice care and their families may be seen as marginalized. The existential pain of a child’s dying and death can scare away devoted friends and family as they struggle with their own grief. Since death has been removed from view in our society, many do not know how to care for the dying or grieving.²⁶ In terms of community services, adult-focused hospices may not feel comfortable in caring for dying children and their families and may not be as familiar with the nuances of pediatric care. If a child leaves the in-patient setting, the family may also lose daily supports in the form of clinical staff who know the child and family and have experience in caring for other children near end of life and their families. Within the healthcare setting, however, issues of inequity also arise as healthcare providers may not have adequate training in communication, symptom management, or providing meaningful, targeted support at the end of a child’s life.^8,27

–30 As families move through this experience, the financial risk may increase as more money is needed for community-based care or a parent leaves employment to care for the child and manage care full-time.

As Power and Faden point out, inequality leads to “suffering in subordinated groups and profound deprivation of well-being.”¹⁸ Inequality stems from many sources and cascades: sick children and families often experience isolation or marginalization; health and social care may be compromised because of a lack of specialty pediatric palliative care and hospice providers and generalist healthcare providers with different levels of training in end-of-life care, differential access to programs across state lines because of Medicaid-funded programs in certain states, diminished wealth because of parents need to leave employment, and potential impact to employment and health service utilization after the child dies and throughout bereavement. Additionally, some adults in power may have a hard time acknowledging childhood death and thus make it difficult to conduct research to improve care because of the many stipulations around it.³¹ Families ultimately feel the impact of this cascade because they experience the effects for years to come, which is compounded by the absence of family-focused services to improve family function, build emotional connection, and foster sustainability. Social justice requires these negative effects to be addressed. One such way to address negative effects is for the state to guarantee a basic level of human capabilities to all individuals.¹⁸

Disparities

Powers and Faden‘s¹⁸ conception of social justice recognizes that some individuals experience greater risk and less protection in achieving a sufficient level of well-being because “some social and economic arrangements systematically disadvantage some persons and groups, both in health and other dimensions of well-being.” It acknowledges contextual and structural factors inhibit potential and actual well-being for many individuals and their families and are important sources of healthcare disparities. The burden of policy-related structural disparities is also present in concurrent care. For example, children and families must obtain certification from a physician or nurse practitioner that the child is within the last 6 months of life. In addition, reimbursement for services is covered by Medicaid and CHIP only. There is no concurrent care for children covered by private insurance. Finally, concurrent care is largely community and hospice-oriented and does not include children receiving palliative care or those receiving end-of-life care in an acute care setting. However, concurrent care is something on which to build and test child and family-centered programs and interventions. Concurrent care provides the groundwork for expanding and ensuring palliative and hospice care access. Without such a bill in place and access to concurrent equally distributed to all children who are expected to die of their disease, the disadvantages these children and their families face are reinforced and compounded.

Necessity for institutional action

Well-being

Powers and Faden argue that well-being is the most important work of social justice. The role of institutions, according to Powers and Faden, is to provide a sufficient level of well-being across its multiple facets for every person. Healthcare institutions, broadly considered, include the organizations that provide care and those entities that finance healthcare. In concurrent care, physical and emotional well-being can be defined as the absence of making the “terrible choice” between continuing treatment for the child’s disease or enrolling in hospice care.³² Thus, organizations that provide healthcare and pay for healthcare have a role in promoting well-being for children with serious illness.

From a concurrent care perspective, treatment providers and hospices have an active role in ensuring the well-being of children and their families at end of life. The family and child decision to enroll in concurrent care with the child’s treatment specialist (i.e. oncologist for chemotherapy) and hospice provider concurrently caring for the child suggests a level of autonomy with respect to decisions affecting the child’s health. In addition, the use of advanced directives with children and their families, which is increasingly discussed in both the acute care and hospice setting, highlights autonomy in decision-making.³³ By providing concurrent care, the physical and psychosocial well-being children and their families is preserved and in many cases enhanced through actions of the healthcare providers.

Social justice requires that the state, as healthcare financer, provide conditions for health and reasonable life span; the state owes a certain level of health to its citizens. This is demonstrated through state adoption of Medicaid and Medicare funding to care for its most vulnerable. Children at end of life and their families are particularly vulnerable because of significant symptom burden, caregiver burden, social isolation, gaps in healthcare delivery, and financial burdens.³

Power and Faden also argue that healthcare and overall well-being of children is essential because their health and well-being is closely linked to their experience, in adulthood, of respect, attachment, autonomy, and reasoning.²⁰ Thus, it is vital to attend to children’s health as a population and as individuals. While many of the children affected by concurrent care will not survive to adulthood, concurrent care is one mechanism by which such children can live as much as possible with their remaining time, develop and deepen attachment relationships, and, for those able, to have a say in their care.

Luxury

Good health

The luxury of good health may be an important gap in concurrent care. Children at end of life may not achieve “good health” by normative standards, yet they should have access to the means to achieve their “best level” of health possible. Despite their illness severity, sick children still have a right to liberty, opportunity, and the foundations of self-respect. Indeed, sick children may need further provisions to ensure such rights are protected in the face of their vulnerable positions in healthcare systems, society, and family relationships. The same could be said of their families. Parents of seriously ill children go through excruciating decision and caregiving points that few parents experience, siblings experience changes to family dynamics that are not shared by many of their peers, and both must deal with a future affected by the illness experience. We can imagine justice would favor accounting for this imbalance of suffering. Thus, a socially just action would call society to care for the least among its members; to put into place protections, in the form of policies, services, and institutions to help ease the burden of suffering experienced by children and families.

Taken a step further, we can examine gaps in this provision and examples of where this is done well to direct further action. In examining policies that potentially ameliorate the suffering of sick children and their families, concurrent care can be considered and further studied. To do so requires that concurrent care be given a chance to work and families be given a chance to evaluate the benefits and burdens of the policy based on their experience with concurrent care.

Discussion

Social justice is central to public health ethics and is rooted in the core ethical principle of justice. Justice calls for equal and fair treatment; in American healthcare, this is conceptualized as availability of and accessibility to high-quality healthcare across the life span and illness continuum. Our review of concurrent care using the lens of social justice identified the benefits of providing concurrent care to children at end-of-life and their families, including a chance at achieving as good a level of well-being as possible for the child and family; the burdens imposed on a child and family when this care is not accessible; the necessity for institutions, including various levels of government, to act in a way that promotes well-being for this vulnerable population; and demonstrates that while the luxury of good health as commonly understood may be out of the reach of these very ill children, concurrent care may bring well-being into reach for ill children and improved psychosocial, physical, and spiritual health into reach for the family as they survive the eventual loss of a beloved child. We argue that concurrent care is a policy with potential to benefit children and families at their most vulnerable and thus should be given adequate opportunity to demonstrate this. Nurses have a role in ensuring that children and families are not only educated about concurrent care, but also advocating for the full implementation of concurrent care among all US states.

Nursing considerations of social justice and concurrent care go beyond the interpersonal to the wider social contract between nursing and society. Indeed, provision nine of the American Nurses Association (ANA) Code of Ethics notes that, “the profession of nursing, collectively through its professional organizations, must articulate nursing values, maintain the integrity of the profession, and integrate principles of social justice into nursing and health policy” (p. 35).³⁴ Nursing’s core values, as stated in this document, include, “the promotion and restoration of health, prevention of illness and injury, and alleviation of pain and suffering” (p.vii). The authors note, “…acting in solidarity, the ability of the profession to influence social justice and global health is formidable” (p. 35). Thus, by our professional code of ethics in the United States, nursing care of individuals, families, and communities is rooted in social justice and ethics of care.

Providing and advocating for care made possible through legislation, such as concurrent care, is an avenue to fulfill nursing values of alleviating pain and suffering (for child and family), and promoting health (according to principles of palliative care of adding life to the child’s years and comfort to family’s grief and eventual bereavement). Nurses, individually and as a profession, are engaged in a social contract with the society we serve. Therefore, nurses and nursing have a shared responsibility to take action and elucidate the effects of illness on children and families to political and policy workers. Such actions bring the effects of the social determinants of health and the need to address unjust systems and structures into stark relief for political and policy workers who are removed from the reality of seriously ill children and their families.

Conclusion

Social justice is a foundational aspect of nursing care. The ANA code of ethics calls nurses and the profession to promote this core value across populations and borders, despite social determinants of health.³⁴ The promotion of social justice also emphasizes nursing’s broad action beyond the four walls of the clinic to the legislative process. What can and should nurses do to align social justice and concurrent care? Nurses are charged to commit to respect, fairness, and caring and to fight against the social determinants of health that render the playing field uneven for children and their families. Although we consider what nurses are charged to do, other healthcare disciplines have professional codes of conduct that call for addressing health disparities and promoting health equity. Nursing is in a prime position to lead such collaborations. Finally, we must also consider how the state is called to act on behalf of its most vulnerable. Since the state can be the largest arbiter, proponent, or barrier to social justice, this consideration is vital. This issue of healthcare access does not fall solely on the shoulders of healthcare providers. Thus, nurses have a critical role as policy advocates for children and families at end of life, since the individuals who control the legislative process are the furthest from the bedsides of sick children.

Footnotes

Acknowledgements

We would like to acknowledge other ethicists who reviewed our work: Dr Connie Ulrich and Dr Matthew Lucas.

Conflict of Interest

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: J.K.-M. was supported by funding from the Translational Health Institute of Virginia Scholar Award and K.M.-D. received Oncology Nursing Society Foundation Research Career Development Award.

ORCID iD

Kim Mooney-Doyle

Lisa C Lindley

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