Bereaved Parents, Hope, and Realism

For parents of children with serious illness, hope is a uniquely powerful mechanism that enables coping and promotes resilience.^1,2  Parents describe hope as a life-sustaining factor,^2,3  one that impacts decision-making processes across their child’s illness journey.^1,4  Recent data reveal parental hopes to be fluid, evolving across the illness trajectory^5,6  and persisting in the face of critical illness and at the end of life.^1,6,7 

In the setting of serious pediatric illness, tension exists between sustaining hope and expressing prognostic understanding.¹  To capture this strain, the analogy of a swinging pendulum has been proposed to reflect the fluctuation between parents’ persistent hope for a cure and awareness of a child’s impending death.⁸  Similarly, the imagery of a pendulum also has been used to describe parents’ oscillation between hoping for the best and preparing for the worst.³ 

Although the pendulum model accurately illustrates how a parent might experience diametrically opposed viewpoints within short time frames, this analogy has several limitations. First, this model intrinsically creates opposition between hope and prognostic awareness. Challenging this concept, parents of children with serious illness have described a phenomenon in which they balance hope and acceptance as coexisting variables rather than conflicting philosophies.¹  Second, the ball at the end of the swinging pendulum cannot exist in both spaces simultaneously. In the authors’ collective experience, parents who face the imminent death of their child often describe hope and awareness as coincidental realities. Third, if the prognostic awareness side of the pendulum arc represents a true version of reality, then a parent who swings toward the side of hope, by default, becomes easily labeled as in denial or in conflict with the medically factual situation.

Within the pendulum paradigm, conceptualizing hope as either realistic or fictitious creates a false dichotomy, one that risks trapping clinicians into erroneous assumptions about parents’ goals and wishes. Particularly at the end of life, health care professionals may misinterpret sustained hope as refusal to accept reality, resulting in needless friction between patients, families, and clinicians.⁹  Categorizing families who express hope for cure as in denial can cause significant discomfort for staff providing care to a dying child^10–12  as well as result in repetitive and painful disclosures of a grim prognosis to an already aware family.¹³ 

Moreover, clinicians who view prognostic realism and hope for a cure as mutually exclusive perspectives may feel compelled to limit prognostic information in an effort to preserve hope.¹⁴  Yet data reveal that transparent disclosure of a poor prognosis by the physician does not diminish hope.¹⁴  Ultimately, most parents remain hopeful regardless of the severity of the prognosis, and direct provision of upsetting prognostic information does not enervate parents’ perceptions of hope.¹⁵  Importantly, many parents of children with advanced illness hope for a cure while simultaneously acknowledging their child’s unlikely survival.^16,17  In the authors’ aggregated clinical experience, this phenomenon is prevalent and powerful; accurate recognition of the concept of simultaneous dual realities carries profound capacity for promoting resilience, whereas failure to recognize this concept may cause undue harm to families and health care staff.

To better understand the phenomenon of simultaneous coexistence of hope and realism, bereaved parents on the Quality of Life Steering Council at a large academic pediatric cancer center convened to review this topic. Historically, the Quality of Life Steering Council was established to develop, promote, and expand institutional support for families of children who die after serious illness. The council is composed of bereaved parents, a grief and bereavement psychologist, pediatric palliative care clinicians, social workers, child-life specialists, and spiritual care providers. Bereaved parents on the council use their personal experiences to advocate for improvements in clinician awareness of patient and family needs across the illness course and after the death of a child.¹⁸  Parents previously have described their participation in collaborative activities to improve understanding of the patient and parent illness experience as a profoundly meaningful component to their child’s legacy.^19,20 

Bereaved parents on the steering council have personal, first-hand experience with tensions that arise when families and clinicians misinterpret one another’s hopes in the setting of a child’s approaching end of life. These parents wished to create a novel conceptual model to help patients with serious illness, families, and health care professionals better understand the phenomenon of simultaneously hoping for a cure and understanding prognostic gravity. This mission led to a partnership between the institutional palliative care team and the steering council to explore alternative frameworks to describe parental hope across the progressing illness trajectory.

The Hear Our Parent Experiences (HOPE) subpanel of the steering council was convened, through which bereaved parents and palliative care interdisciplinary clinicians met to discuss the concept of hope versus realism in the setting of a child’s progressive disease. Across iterative meetings, several central questions were formulated to help frame these collaborative conversations: (1) What did hope mean to you during your child’s illness, particularly toward the end of your child’s life? (2) Did you ever feel hopeful and realistic at the same time? (3) What did that experience look or feel like to you?

Eleven bereaved parents on the steering council reflected orally on these questions in 2 face-to-face HOPE forums, and 9 parents shared their experiences in written prose with the collaborative group, with the goal of synthesizing a spectrum of parent perspectives to inform the development of fresh imagery as an alternative to the pendulum model. Two palliative care clinicians on the steering council (E.C.K. and A.K.) compiled and organized parent verbal and written responses to formulate the primary messages emerging from the forums. All participating parents and clinicians reviewed and discussed the synthesized materials to ensure that the narrative and text accurately reflected the perspectives shared by the bereaved parents. Below, we share our consensus report consolidated from the HOPE forums.

Bereaved parents identified 7 working definitions of hope in the face of a child’s advancing illness and approaching end of life, which subsequently helped inform the development of a conceptual model. These definitions are presented in the exact words of the bereaved parents in Table 1. Parents further distilled their experiences into 3 salient variants of hope, also presented in Table 1: hope for a cure, hope for life beyond illness or return to normalcy, and hope for comfort or mitigation of suffering.

Collaborative reflection on the question “What did ‘hope’ mean to you during your child’s illness, particularly toward the end of your child’s life?” generated 6 unique motifs: (1) hope as an action, (2) hope as a survival mechanism, (3) hope as validation of the “good parent” role, (4) hope as an evolving experience, (5) persistence of hope for a miracle, and (6) existence of hope at death and beyond. These concepts, enriched by stories shared by our bereaved parent coauthors, are described in Table 2.

Consolidation of parent responses to the question “Did you ever feel hopeful and realistic at the same time? What did that experience look or feel like to you?” yielded unanimity in the belief that parents facing the likely death of a child invariably experience both profound hope that their child will survive and coinciding understanding that their child will die. The parents’ personal experiences with the simultaneous coexistence of hope and prognostic awareness are communicated in their own words in Table 3.

We met with a panel of graphic design artists to review the goals of this collaboration using the exact language that the parents provided to guide figure development. We convened a series of 5 brainstorming sessions to discuss, deliberate, and construct different visual concepts, eventually reaching consensus on the conceptual model presented in Fig 1. In this model, a figure exists within a wind-swept circle of flowers, simultaneously watering the flowers while also cradling a flower as its petals drift away. The figure is intentionally amorphous, androgynous, ageless, and not affiliated with a particular race or ethnicity, allowing space for diversity of representation. The swirling circle is evocative of the life cycle, the flowers illustrative of the beauty and fragility inherent to life. The watering can symbolizes the good parent role²¹  and the parent’s intrinsic hope to continue supporting and nurturing the child. At the same time as the parent pours life into the child, the parent also acknowledges the falling petals and gently allows the child’s spirit to let go. Importantly, even as the petals fall from the hand, the flower does not lose its wholeness nor appear any “less.” Further details related to imagery conceptualization are provided in the figure legend.

Feudtner’s⁷  “breadth of hopes” is embodied in the range of hopes expressed by our bereaved parent coauthors, who sought to develop a new framework to describe hope in the face of progressive illness. While discussing and codifying the proposed model, bereaved parents defined hope as essential and intrinsic to the anticipatory grief and bereavement journeys. Whether wishing for a cure, a return to normalcy, or mitigation of suffering, parents unanimously emphasized the ever-presence of hope as indispensable, not despite (or in opposition to) their realism but, rather, because of their prognostic awareness.

This consensus statement affirms the growing body of literature on parental hope in the context of serious pediatric illness, in which hope has been described as an “essential, powerful, deliberate, life-sustaining, dynamic” entity and a source of strength absolutely necessary for day-to-day survival.^3,22,23  At first glance, the fortification of hope in the face of apparent clinical deterioration may seem paradoxical. Yet if one conceptualizes hope as life-affirming as opposed to death-denying,²⁴  then this phenomenon begins to crystalize. Hope can help create space for coping and healing, irrespective of whether the goal is cure or comfort. Importantly, reliance on hope appears not to be harmful; specifically, parental hope for a cure at the end of their child’s life has not been associated with increased depression symptoms or long-term complicated bereavement.²⁵  Rather, hope exists as a salve, a means to ease, rather than deny, the pain.

Historically, a parent’s ability to feel hope and acknowledge reality has been described as a type of push-and-pull process or a wavering between states of awareness.^8,26  Our bereaved parent coauthors challenge this paradigm, suggesting instead that hope and realism can coexist simultaneously rather than oscillate. One parent pointed to the optical illusion of a spinning dancer²⁷  to describe the coexistence of hope and prognostic understanding (Table 3); both truths inherently have the potential to coexist. Crucially, if a parent verbalizes hope as a means for coping or survival, this does not necessarily indicate lack of awareness or denial, nor does it necessarily mandate reiteration of prognostic information from clinicians. The key, our bereaved parent coauthors agreed, is to raise awareness of this phenomenon and encourage clinicians to partner with patients and families living within the conceptual framework of hope and realism.

Parents of children with serious illness report loss of hope as one of their primary fears.³  Interestingly, they also mitigate this concern (ie, keep hope alive) through strategies that include restructuring hope, intentional positive thinking, cultivating a sense of control, and accepting reality.³  Although this final strategy may appear counterintuitive, acceptance of reality has been shown to create space for reframing expectations (“regoaling”) in a way that may bolster one’s capacity for hope.²⁸ 

Throughout the literature, parents express a desire for clinicians to recognize these tensions that they face (ie, hoping for the best while preparing for the worst) and meet them where they are during an impossibly difficult time.^7,24  Yet continuing to endorse hope as a child approaches the end of life can create challenges for the health care team. Clinicians may worry about enabling false hope, thereby failing to prepare the family adequately for the death of the patient. In this context, Feudtner⁷  stresses that health care professionals should not focus on judging hopes as realistic or false; instead, clinicians should strive to explore and nurture the diverse and evolving hopes of our patients and their families.

Our parent coauthors unanimously advocate for health care professionals to acknowledge and normalize the tension that exists when a parent must maintain hope while simultaneously facing a grim prognosis. Clinicians must remember that most parents consider maintaining a positive outlook to be more important than fostering a realistic outlook.²¹  For many, being a good parent is inextricably linked with sustaining hope^21,29 ; by acknowledging that many parents perceive their role as bearers of hope,¹  health care professionals can better support families as medical circumstances change and hopes evolve.

Clinicians also can grow therapeutic alliance and support patients and families by continuing to convey hope, even in the face of incurable illness.²⁹  If parents express hope for a cure or miracle, health care professionals can foster partnership by sharing in this hope (eg, “I hope for a miracle alongside you.”) Such statements do not engender false hope; they simply validate and normalize the intrinsic hopes that may coexist with prognostic awareness. We encourage clinicians to consider gentle follow-up questions (eg, “And what else are you hoping for?”) in an effort to prompt further conversation around additional hopes, wishes, goals, and worries.⁷  Even hopes that manifest during imminent end of life can and should be normalized for families struggling to navigate anticipatory grief. Clinicians should be cognizant that, for some patients and families, maintenance of hope may help facilitate a “good death.”³⁰ 

Bereaved parents in collaboration with interdisciplinary palliative care clinicians propose a novel conceptual model that emphasizes the simultaneous coexistence of hope and prognostic awareness. We believe that better understanding and acceptance of this updated framework may help empower clinicians in their support of families of children with serious illness, particularly in the context of approaching the end of life, while also mitigating provider assumptions that conflate hope as misinterpretation or denial.

Specifically, our parent coauthors advocate for use of this model to help clinicians (1) nurture and normalize hope as an essential aspect of coping, (2) partner with patients and families who maintain hope as they navigate the difficult anticipatory grief journey, (3) anticipate and acknowledge the tensions inherent to fulfilling a good parent role within this impossibly difficult process, and (4) mitigate clinician distress due to fears about fostering denial or false hope. We hypothesize that clinician recognition of the coexistence of hope and realism has the potential to strengthen the therapeutic alliance and promote provision of goal-directed care. Conversely, we worry that failure to acknowledge this duality may result in undue harm to families and health care staff.

Further studies are needed to investigate whether this conceptual framework is generalizable to other pediatric centers and subspecialties. Our bereaved parent coauthors represent different parental roles and geographic regions; however, all parent coauthors are white, and we acknowledge that this as an important limitation and advocate strongly for future work to represent the diverse perspectives of bereaved parents from different races, ethnicities, and religious backgrounds. Our steering council specifically encourages additional research to ascertain whether exposure to this framework may improve parental experiences with therapeutic alliance with the health care team, decision-making, and anticipatory grief during a child’s approaching end of life as well as mitigate decisional regret and complicated bereavement for parents after the death of a child. We also advocate for investigation into how exposure to this conceptual model, through didactics or experiential learning, might influence the assumptions and beliefs of health care professionals, diminish clinician distress at the bedside, and promote resiliency in the setting of emotionally challenging clinical practice.

Members of the St Jude Quality of Life Steering Council include Wendy Avery (parent of Nick), Tamara and Andrew Featherstone (parents of Sam), Tasha and Dean Ives (parents of Sydney), Lisa Musser (parent of Thomas), Christine and Kevin O’Brien (parents of Catie), Keith Roskowski (parent of Josh), Lisa Trumbo (parent of Trevor), and Katie Witsoe (parent of Sean).

We also acknowledge Christopher Fiveash, Joshua Stokes, Jerry Harris, and the entire Biomedical Communications Graphic Design Team for their invaluable assistance with creation of the hope and realism model.

HOPE

Hear Our Parent Experiences