While family-centered care does advocate respect for the family system, it also urges healthcare professionals to “recognize and build on the strengths of each child and family.”⁹ With a family-centered approach, professionals try to learn about the family’s life, past and present, both inside and outside the healthcare system. Within that larger context, professionals can better understand and respond to each family’s coping strategies. Practitioners, while remaining nonjudgmental and compassionate, attempt to assess the family’s coping strategies in terms of how functional they are. While the approach is to honor the family as the expert in their own experience, there are still instances when the coping is not functional and potentially harmful, including situations such as family violence, substance abuse, and self-injurious behaviors. In these situations, healthcare professionals intervene to protect the child and, where possible, assist the family in maximizing safety, function, and wellness for each of its members.

In family-centered practice, family members are viewed as partners with healthcare professionals in caring for the child, providing information, and in making decisions about care and treatment. Families are recognized by the healthcare system for their essential role, as “nurturers, caregivers, and decision makers in their children’s lives.”¹⁰ Professionals endeavor to understand the values and beliefs that are part of the family’s world, and how those influence the family’s understanding of situations they face and solutions they might find acceptable. “Family strengths and capabilities (not only problems and needs) are recognized and valued in the planning and provision of care.”¹¹ While nothing can prepare a family for the challenges of caring for a child with a life-limiting condition, the guidance of an interdisciplinary team that can appreciate their needs is invaluable.¹²

In clinical care, we often refer to caring for and honoring the experience of the family. While it is true that each family will have a unique experience based upon its own psychosocial history, cultural and spiritual beliefs, and family composition, it is equally true that individual members of a family system will construct their own personal meaning out of the experience. Sometimes families are aligned in their approach to the experience, but just as often they are not. Family systems are affected by change in any one member, and certainly a child’s life-threatening illness compels the entire system to renegotiate roles, rules, and experiences. The interdisciplinary pediatric palliative care team considers the entire family and provides support to each member. Pediatric palliative care is grounded in the principle of reducing suffering, both physical and psychological, for the child and the family. For healthcare professionals, the family is both an integral part in providing optimal care to the child and a part of the patient system that needs supportive services.

In providing care to the family of children with life-threatening or life-limiting conditions, the healthcare team should hold a broad definition of family to include parents, grandparents, siblings, cousins, and individuals who represent chosen family or are like family for the child. Family can be defined as “two or more people who are joined together by bonds of sharing and intimacy,” which can include biological, adopted, step, multigenerational, transracial, same-sex, informal, and created families.^13,¹⁴ Additionally, given the mobility of today’s modern family, members who are not living together should also be considered family for the child. Asking the child who his or her family is will likely elicit both the immediate family system as well as the extended and psychological family systems. The family system serves a foundational place in the life of a child and provides context for the experience of identity, meaning, and understanding of lived experiences. For many cultures, family almost always means a large and extended group of people who care about the child and may or may not be biologically related to the child. In a recent study of Latino adolescent cancer survivors, the participants indicated the importance of having their entire family, including distant aunts and uncles, present at many appointments and inpatient stays.¹⁵

While the philosophy of family-centered care is widely accepted in pediatric healthcare, including palliative care, its actual practice is not always consistent with the underlying philosophy. Indeed, “it is possible to affirm the philosophy, at least intellectually, without truly putting family-centered care into practice.”¹¹ Another concern is that family-centered care can be misunderstood or not fully implemented. For example, in some institutions family-centered care consists merely of a visitation policy that allows more than two visitors to the bedside and a parent to stay overnight. That should be viewed as one facet, not the centerpiece, of family-centered care. Without an overarching commitment to fundamental principles of family-centered care and its comprehensive practice, families facing a life-threatening condition of a child frequently must endure confusion or even negative feelings about the healthcare system and their role within it, and second-guessing of their decisions. They also suffer an apparent lack of concern regarding aspects of their lives beyond the medical status of the ill child, such as siblings, work, marriage and other family relationships, and personal decisions.

The two vignettes that follow are from mothers of critically ill infants and powerfully illustrate these feelings and the discrepancy between theory and practice that can exist.

It was like a lost world. I felt totally removed from the “normal” world. I could spend a few hours there and experience the most amazing contradictions. Life and death; terrible anguish, and yet unbridled and sometimes senseless hope. A sense of urgent quiet, with the underlying whisper of nurses and the interruption of machine noise always warning of some impending disaster. I was expected, by both the staff and myself, to learn the medical minutiae of caring for a baby that was mine, and yet not quite mine. I tried my best to nurture, to behave like a mom; even to hold my baby close, while dressed like a surgeon ready to operate. The neonatologists and residents came in for rounds and discussed the babies at a normal volume; but we parents were asked to lower our voices when talking with each other. It often felt like our experience was not real, but some TV movie. Occasionally, a baby would burp loudly and I would laugh with relief, only to look up into the eyes of a mother who had just received some horrible news about the results of her child’s last procedure. After a while I mastered walking a very thin behavioral and emotional line. Entering the subway to go home each day was such a rude transition that I often burst into tears.¹⁶

I think that in a high-tech environment, like a PICU, the feeling you get is that it’s all here, it’s available, we can just turn this on and add this and add that. As a parent you’re given the feeling that if you say “no,” you’re making the wrong choice, and you’re making a selfish choice, as opposed to a choice in the best interest of your child. . . . We were not in a situation that welcomed shared decision making. My main thought was, “Will they let us make the decision that we want for our daughter?” As empowered and resource-rich as we were, that situation was horrifying.¹⁷

As we are reminded by the following quote from a seasoned healthcare professional, the job of ensuring that family-centered pediatric palliative care moves from theory to practice falls to individual professionals, healthcare institutions, and a growing number of coalitions, it is hoped, in collaboration with family members themselves.

“In the NICU or other healthcare settings, confusion is not the ‘fault’ of parents. They are not confused because they lack intelligence or are troublesome. Rather, confusion is legitimate for the situation. It’s the responsibility of professionals to adapt to different levels of confusion and understanding in parents.”¹⁸

If family-centered care, including pediatric palliative care, is sometimes more theoretical than real, then healthcare professionals will need to move these principles into practice and support families of children with life-threatening conditions in two critical areas:

• Partnerships around the care of children and decision making

• Support to maintain family integrity and life, thus, providing a sense of control and normalcy

Maintaining integrity and some sense of normalcy for families also entails consideration and support of practical dimensions of life. The mother’s following quote highlights the Herculean balancing act families are required to perform and the stresses and anxiety it causes:

“Being away from my other two kids (was difficult) because, I mean, they understood their brother was sick and I had to stay with him, but the only thing is that I was so far away from everybody and then my husband had to travel back and forth to work and I was already off from work, with my son being in the hospital.”⁸

If family-centered care means that both the child and family are the units of care, then healthcare professionals and institutions must understand and address these practical needs in order to provide quality pediatric palliative care.

Impact on family members

Families of a child with a life-threatening condition find themselves on a roller coaster of uncertainty, anxiety, and anticipatory grief. From the time they realize something is wrong until they learn of the diagnosis, they are faced with stress of difficult decisions and feelings of failure as they struggle to find a cure or treatment. The family characteristics have an impact on both their specific needs and on the services that may be offered to them. Integral to the design of appropriate palliative care strategies is knowing the type of family, nuclear, single parent, blended, same gender parents, multigenerational and understanding the relationships among siblings, parents, and extended family members, and the roles members assume within the family. It becomes important to inquire about the members of the family and their respective roles in a child’s care. Families may react in very different ways to the child’s illness. If the family is a two-parent family, each of the parents may cope differently and therefore have difficulty supporting each other, resulting in a loss of intimacy and connection. Disease-directed treatment regimens typically necessitate that one parent takes a central role with the ill child, while the other continues to work outside the home. This may result in one parent feeling that he or she is taking all the responsibility for caregiving, or conversely, for holding the family together in a financial sense. Through keeping the lines of communication open among family members, healthcare providers can provide needed opportunities for families to share their feelings.

Single parents may feel the burden of being alone in their decision making without support or a balanced perspective in providing care for a child with comprehensive needs. Healthcare providers may assist a single parent in identifying a support system. Unfortunately, families may dissolve as a response to a child’s illness, magnifying the impact of a life-threatening condition.

Blended families have a unique situation where only one parent has decision-making authority, but both parents care deeply for the child and the non-custodial parent may feel marginalized. It becomes important for healthcare providers to assist with the identification of caregiving roles for the non-custodial parent, if he or she chooses to be involved.

Same-gender parents may be met with insensitivity to their individual needs and roles within the family. Some centers have support groups for mothers and different support groups for fathers. Helping same-gender parents respond to their needs for support without feeling ostracized is an important role of the healthcare team.

Multigenerational families may have the additional burden of caring for elderly family members. Often, these families experience not only the stress of caring for a child with a life-threatening condition, but they must also be concerned about aging parents. Managing the financial and emotional burdens takes a huge toll on these families, and social workers can be helpful in responding to their needs.

These diverse family structures require the healthcare team to make deliberate efforts to include parents meaningfully in communication and decision making. When illness is protracted, families often experience a loss of support over time, a loss of normalcy, ongoing financial stress, and an exaggeration of new and pre-existing stressors, such as financial strain or relationship difficulties.

Historically, family-focused research has emphasized needs of patients and parents. Siblings have received less attention but have been documented to be at risk for multiple psychological, social, and cognitive difficulties.¹⁹ Healthy siblings may feel neglected, resentful, and confused as they struggle to find their own sources of support. Often a chronically ill child endures years of stressful treatments, and most of the family’s attention is directed to the patient while the needs of siblings may be overlooked. Siblings of children with life-threatening conditions face unique challenges where their needs may have been neglected or deferred, leading them to wonder, “What about me?” They often report less quality time with parents, uncertainty about parents’ ability to meet their needs, feelings of guilt, negative thoughts about their sibling-patient, and feelings of fear and anxiety due to changes in routine, and worry about the illness itself. Siblings often report feelings of isolation, withdrawal, sadness or depression, feeling not good enough, trouble with academic performance, and difficulty in relationships. As one sibling put it:

“The ache in my sister’s side would begin a long journey for our family through distress, death, and love. We were all on the same road, but miles apart. As her illness became the focal point in our lives, jealousy, anger, and confusion jumbled in my mind. I wondered if our family would ever be the same. . . . I became very tough on the outside, but I was dying on the inside.”²⁰

Beyond the sibling, only limited attention has been devoted to the needs or grief processes of grandparents.²¹ In fact, grandparents have been called “forgotten grievers.”²² Not only are they forgotten, but also they may experience double pain.²³ Grandparents grieve for the dying grandchild, but they also grieve for their own child’s loss and suffering. While extended families may be very close during a child’s illness, grief may result in distancing and alienation. Clearly an appreciation of grandparents’ grief, their roles in the family, and cultural sensitivities are integral to effective comprehensive family-centered care.

Comprehensive care for family members should involve including information they can understand, addressing emotional concerns, providing spiritual resources, and also helping with practical issues, such as managing health insurance forms, and having advanced directives at hand when needed. In order to consider the family, we use the following case to frame our discussion:

Michael was diagnosed with hypoplastic left heart syndrome while in utero. His mother had a routine ultrasound at five months’ gestation and the defect was diagnosed at that time. Michael’s mother and father decided to continue the pregnancy and make further decisions about treatment after delivery. At two days of age, Michael underwent open-heart surgery as the first stage of repair for the heart defect. He did well following the surgery in the pediatric intensive care unit, but developed complications and arrested while still in the PICU. Resuscitation was successful and his 5-year-old sister, Emily, was allowed to visit him briefly in the unit. Michael’s parents took turns staying with him, alternating who was at the hospital and who tried to maintain normalcy for Emily at home. Unfortunately, Michael continued to have difficulties and arrested two more times. His parents decided to forego further CPR. Michael died in the hospital at two months of age, without ever having been home.

Information needs

When a child is diagnosed with a potentially life-threatening condition, families benefit from information about the probable progression of the condition, including what is known about life expectancy, physical and mental changes they might expect, and side effects of treatments. Clinicians need to provide all available information supplemented with their relevant clinical experience, while acknowledging an element of uncertainty. Parents and other family members often want to know how long the child has. While it may be certain that death will eventually ensue, forecasting its exact timing is impossible and may lead to confusion when reality does not correspond. Research has shown limitations of prognostic determinations for adults, and there is even less certainty with children, given the much lower numbers of deaths in children.^2,²⁴ In general, it is preferable and usually possible to state an expected lifespan in general terms of months, weeks or days, and to revisit that timeframe as the child’s changing conditions declares itself.

While the Internet can be a resource for general information and parent-to-parent support, it is important for families to be knowledgeable about credible sites, and avoid those intended for professionals as they may be highly technical and difficult to comprehend. Michael’s parents accessed the American Heart Association website and found a link to an excellent description of their son’s heart defect, specifically written for parents, which they could understand.

When there is very little chance of recovery, parents may choose to forego intensive treatments that may have questionable benefit for their child. Healthcare practitioners are challenged to provide honest, timely information while helping the family maintain hope that is appropriately tempered by realism. Unrealistic expectations for cure may deny parents the opportunities to build lasting memories crucial for negotiating the process of grief, such as taking one last trip, connecting with that special visitor, or saying good-bye. Michael’s parents informed the palliative care team they wanted clear and timely information, even when there was uncertainty. But just as they want information, they told the team they wanted to impart information as well. They wanted to be listened to and recognized as the experts about Michael. They had spent much more time with him than any single healthcare provider. Even with a caring healthcare team and help from friends, much responsibility for implementing a child’s care rests with parents. Many parents have asserted with good humor that they should receive honorary medical or nursing licenses.²⁵ In fact, in the case study; Michael’s mother did go to nursing school a year after his death so she “could support other parents.”

Emotional needs

When a child is at risk of dying, the normal sequence of life events is disrupted. Initially, Michael’s parents had to make a decision about whether or not to sustain the pregnancy. Then there was a decision after birth about whether to go through with a complex Norwood procedure, or provide comfort care. There was the relief that the first surgery went well and then the horrible realization that Michael would not survive. For Michael’s family, there were ranges of emotion depending upon the content of the day and their son’s medical and psychological status.

Healthcare providers should be mindful of the many dimensions and manifestations of emotional distress in parents. Parents may feel guilty that something they did resulted in their child’s condition. Michael’s mom was plagued by questions about prenatal care and early parenting decisions that caused her to need reassurance that she was not culpable in Michael’s illness. Providing that support is more complicated if the actions of the parents contributed in any way to the child’s health condition.

The emotional roller-coaster may impact the ability of parents to relate to siblings and extended family members. Support for parents may be provided best by family and friends, but parents may have difficulty accepting that support. They may also reach out to the healthcare team for that support. In addition, the team may help through referrals to other professionals for additional counseling.

Spiritual needs and making meaning

Spirituality, broadly defined, encompasses all of the ways that we find understanding and make meaning out of our experiences.^26,²⁷ Perhaps there are no circumstances where this definition is more important than in the life-threatening or life-limiting illness of a child. The essential question for these children and families is how they are to integrate the meaning of this experience into their lives. How does the illness, injury, loss, or death impact how they see themselves, their lives, their sense of family, and future? It is how meaning is derived from experience that determines the personal impact that experience will have.

Meaning is not a static state but instead the family and child are engaged in thousands of moments that create their understanding of the experience. We, as care providers, are charged with helping them integrate this experience and maintain connection to their loved ones and their sense of themselves. This may mean supporting the family in their religion or in any of the ways that they struggle to understand what is happening to them. One way to inquire about this without implying a religious connotation is to ask, “How are you and your family making sense out of what has been happening to you?” or, “What rituals are important to your family?” There are many rituals that can define a family’s spiritual life and ability to make meaning out of their experiences.²⁷ These can include special family rituals, shared values, traditions, and a belief in the purpose of one’s life. In all cases, care providers can offer loving support and opportunities for connection, healing, making meaning, and hope. Healthcare professionals do not necessarily have all of the answers about spirituality, and life and death, and cannot be expected to provide them to others. The most important roles for the healthcare provider are to be attentive to the child and family and to create opportunities for them to safely explore their own spiritual concerns. Michael’s family decided to have his memorial service in the chapel at the children’s hospital where he died. They were not religious but felt a spiritual bond with the staff they wanted to honor.

Practical needs

Because families are so diverse, the needs for practical assistance vary enormously as do the challenges of meeting those needs. Opportunities to assist with the practical needs of families receiving palliative care range from finding housing to providing advice related to employment issues. Depending upon the socioeconomic status of the family, they may need significant support to provide for their family while struggling with their child’s diagnosis. Families may need help with legal issues, financial assistance, housekeeping, lawn care, or some respite from the constant demands of care giving. For families who are recent immigrants or who have concerns about citizenship status, they may be concerned about seeking care in the medical system. Families that are separated by distance, families that have a member who is incarcerated, or those with significant members residing outside of the country all need specific support and intervention.

In addition to emotional support, siblings may need help with homework, babysitting, and transportation to activities that confer some normalcy in their lives. Contacting teachers to encourage creative ways for siblings of an ill child to complete assignments is helpful. In some cases, even visiting the classroom of a sick child or the sibling may improve peer support. In Michael’s situation, a nurse and child-life specialist from the palliative care team visited his sister’s classroom to help the kindergartners understand why Emily was missing so much school. The team members also suggested what the class might do to help her feel better, such as making a giant card telling her she was missed.

The Initiative for Pediatric Palliative Care (IPPC) developed Quality Domains, Standards, and Indicators of family-centered pediatric palliative care. The standards included the provision of “a range of practical (including financial assistance), emotional, and spiritual supports available to meet family-identified needs through the health institution and/or in the community in order to enable the family to maintain its usual life to the greatest degree possible.”²⁸ A companion quality improvement tool developed by the IPPC, the Institutional Self Assessment Tool (ISAT), can be used as an assessment about resources for practical needs available within institutions and communities. Because of the uniqueness of each family, needs may vary widely and interventions must be tailored to each individual situation.

Developing and Changing Goals of Care

In family-centered care, the goals of care can be developed collaboratively with the family and may change repeatedly throughout the care trajectory. An important element of pediatric palliative care is balancing the desire to cure with the recognition that futile or burdensome medical intervention may not be in the child’s best interest. There is never a situation when it can be said, “There is nothing more we can do.” The goals of care may change, but there is always something an interdisciplinary team can do in providing palliative care. In today’s world, the problem is that there is always more to do in terms of disease-directed treatment. Sometimes that treatment is inappropriate in the face of a life-limiting illness. The wisdom is in knowing when it is time to stop disease-directed treatments and focus on palliative interventions. Healthcare professionals can be companion to and guide the family as they navigate the challenges of making decisions, care giving, and providing support. A family systems approach involving the multidisciplinary team members may help those making decisions take into account all factors relevant to their situation. For example, a family having difficulty discontinuing futile disease-directed treatments may need to be supported and counseled about how their decisions affect the future of their family system. Continuation of futile therapy may not only threaten the well-being of their child, the patient, but also generate crushing debt and economic instability that jeopardizes the family’s ability to provide a secure financial future for surviving siblings. Balancing such disparate considerations is not an easy task in the midst of a highly emotional situation. However, it is the multidisciplinary team’s responsibility to provide both critical information and assist the family in synthesizing it and understanding its practical implications. A systematic evaluation of care goals may help families to change the focus from cure to comfort. Over time, parents may realize a cure is not possible and they are then better able to focus on goals of physical comfort, family functioning, and emotional support to enhance the quality of remaining time for both the child and family. Early introduction of parents and siblings to a palliative care team enables the development of relationships over the illness trajectory. Because goals of care fall into the realms of physical, emotional, spiritual, and mental needs, an interdisciplinary team consisting of nurses, physicians, social workers, child-life specialists, chaplains, and psychologists is needed to support a family undertaking these changes.

Some noteworthy tools have been developed to help interdisciplinary care teams work with families in developing and changing goals of care. Under the Robert Wood Johnson project, “Promoting Excellence in End-of-Life Care,” The Pediatric Palliative Care Project of Seattle’s Children’s Hospital Regional Medical Center developed a decision-making tool to help families across the state of Washington plan care for children with progressive, potentially terminal illnesses. This tool allows family members and the healthcare team to view a complex case from four points of view: medical indications, quality of life, contextual issues, and patient and/or family preferences. The process of using the tool facilitates family-centered team communication and often leads to a collaborative plan of care.

SSM Cardinal Glennon Children’s Medical Center in St. Louis collaborated with the Saint Louis University School of Medicine to build and maintain FOOTPRINTS, a statewide network of healthcare providers who care for terminally children and their families in their homes in Missouri. The FOOTPRINTS program also developed a care-planning tool to use with families of children with life-threatening conditions. The FOOTPRINTS program identifies difficult issues for families that may arise while caring for their children. Its care planning process acknowledges the family as the center of decision making and addresses not only the physical but also the psychosocial, spiritual, and emotional needs of the child and his or her family.

Considerations of Child Developmental Stages in Understanding and Discussing Death

Parents often ask care providers for advice on discussing with their child the topic of his or her impending death. Again, the multidisciplinary team, which should include a chaplain, psychologist, and child-life specialist, is positioned to assist parents in this difficult task. This requires understanding the child’s cognitive, emotional, and spiritual development as these apply to acquiring a workable construct for the meaning of death. There are wide variations in this development, which is influenced by intellectual capacity, cognitive function, personal experiences, cultural and religious backgrounds, and emotional makeup.

A mature understanding of death as a biological event incorporates the constructs of irreversibility, finality or nonfunctionality, universality, and causality.²⁹ These can serve as a basis for evaluating a child’s understanding of death. Irreversibility refers to awareness that when people die, their bodies do not become alive again. Universality refers to an understanding that all living things die. Nonfunctionality refers to lack of bodily functions such as breathing and eating. Finally, causality refers to being able to identify possible reasons why people die. In order to assess an understanding of this construct, healthcare providers might ask, “What makes people die?” Most children recognize a changed state and that something is dead (nonfunctionality) by 3 years. They realize all living things die at some time (universality) by 5 to 6 years, and that they will also die at some point by 8 to 9 years.^29,³⁰ Healthcare providers may ask the child direct questions to begin to assess the child’s understanding of their own health status and life expectancy. Especially for the younger child, more useful information may accrue from discerning answers through informal but directed conversation aimed at exploring a child’s previous experience with death of family members, friends, or pets.

The point of conducting such an assessment is to provide parents and families with knowledge of their child’s developmental understanding of death. The concerns that a child may have about dying stem from his or her understanding of death, and range from the concrete to the theological. Incomplete or wrong information can result in unnecessary anxiety. For most young children, their greatest fear is that they will be alone and/or in pain. Parents and the interdisciplinary team should be direct in reassuring them that this will not be the case. Older children should be offered access to spiritual support through the palliative care service or in conjunction with their own clergy. Parents should be supported to help them allow their children to discuss death as freely as they wish, without concern for upsetting their parents. It is not rare for parents to tell care providers that they do not want death to be discussed with their child for fear of upsetting him or her. While on some level this may reflect a genuine but misguided parental concern, far more often it is a symptom of parents who are experiencing difficulty coming to terms with the impending loss of their child. It can be useful to aid parents in gently gaining insight into the actual dynamic and to point out that even very young children are aware of their fate well before being told. Refusing to speak freely with children about death results in isolation and a loss of support at a critical time, and that isolation is from the most trusted individuals in their lives.

Family Conflict

Family variables such as conflict, cohesion, communication, and type of parenting are often used to describe a home environment and quality of a caregiving system. When parents are caring for a child with a life-threatening condition, it is likely there is an impact on parental functioning that may adversely affect the entire family through marital disruption, family conflict, lack of cohesion, and parenting. This may then lead to stress within the family that can spill over into relationships with extended family members, neighbors, teachers, and the healthcare team. Extended family members can pose their own challenges in the setting of life-threatening illness. Not uncommonly, relatives such as a child’s grandparents, aunts, or uncles who have had little or no presence in the child’s medical course will emerge at the child’s demise. They will vociferously advocate for parents to continue all means of aggressive disease-directed treatment and not give up. Especially for families of a child with a prolonged course of treatment, as in cancer with multiple relapses, parents gain a unique perspective informed by firsthand experience with their child’s suffering, which tends to moderate more extreme views of extended family. The extended family’s views may be well-intentioned but are usually based on beliefs and theoretical values but not on medical experience. This places parents in the difficult position of considering a choice that best serves their child but directly opposes the strong opinions of extended family. Clinical experience suggests this type of conflict can often be resolved with help from the multidisciplinary team by:

• Affirming the parents are in a difficult position,

• Quietly supporting parents in their primary role of protecting their child’s well-being,

• Offering to meet with extended family to remove suspicions and share essential medical information concerning prognosis and risks of continued treatment.

Few data are available regarding factors associated with illness and death to accurately predict the functional variability of families, especially siblings.² The evidence that does exist suggests that severe grief reactions among siblings and adults are more common when the deaths were recent, unexpected, in the hospital vs. at home, and associated with a lengthy illness or suffering.² Bereaved siblings may actually experience a two-fold loss when faced with not only the death of a sibling, but also the emotional unavailability of parents consumed by their own grief. As one mother stated, “I told (sibling) one day, I said, you know, you are a strong little boy. . . . I have cried and cried and you are just my little rock. And he said, ‘Mom, he’s right here’ (mom stands up and puts her arm out like it’s around shoulder of someone standing next to her).”³¹ A death of a sibling is particularly challenging as it marks the end of what was expected to be a long and sometimes intimate relationship.^32,³³ Common emotions expressed by siblings include anger, guilt, jealousy, fear, depression, and anticipatory grief.³⁴ Potential behavioral issues may be mitigated in families that are more cohesive and active in social and recreational activities and in those who put a greater emphasis on religion.³⁴

However, there is also evidence that bereaved siblings exhibit positive attributes: increased maturity, self-esteem, empathy, and creativity.³⁵ Support from families’ social, recreational, and religious activities may serve a protective function for bereaved siblings. Clinicians who show sensitivity to the amount of social support available to families can be especially beneficial in helping families when a child is ill or following the death of a child. Siblings can benefit from support groups, individual and group counseling, and from creative play activities, such as art and music therapy. Depending on their ages, they may not be able to verbalize their fears, but competent therapists can help them express themselves through alternative media. Child-life specialists and social workers are specially trained to assist siblings through this difficult time. Clinical experience suggests that siblings who play active roles in caring for the dying child, however simple those may be, adjust better to the future loss than those who are withdrawn or excluded. The extent to which these siblings are self-selected for better adjustment, possibly due to pre-existing family dynamics of greater openness and inclusion, is unclear.

Interdisciplinary Teamwork

In describing various roles related to palliative care, we frequently consider multidisciplinary, or a non-integrated mixture of disciplines, with a many-faceted team approach. Having experts work toward meeting the different needs of children and their families is often described as interdisciplinary, as team members combine their efforts and work together to address the needs. However, as team members become more adept at working together, they may even be called transdisciplinary. This transdisciplinary approach is a framework for facilitating healthcare team members to contribute knowledge and skills while collaborating with other members, and collectively determine the services that most would benefit a child and family. According to Bruder,³⁶ “This approach integrates a child’s developmental needs across the major developmental domains” and “involves a greater degree of collaboration than other service delivery models” (p. 61).

Bruder describes this approach in more detail:

“A transdisciplinary approach requires the team members to share roles and systematically cross discipline boundaries. The primary purpose of this approach is to pool and integrate the expertise of team members so that more efficient and comprehensive assessment and intervention services may be provided. The communication style in this type of team involves continuous give-and-take between all members (especially with the parents) on a regular, planned basis. Professionals from different disciplines teach, learn, and work together to accomplish a common set of intervention goals for a child and her family. The role differentiation between disciplines is defined by the needs of the situation rather than by discipline-specific characteristics” (p. 61).

While it is important to consider discipline-specific roles, an interdisciplinary palliative care team, or even various members of a healthcare team, may experience overlapping roles without attempting to be discipline-specific. It may not really matter who does what as long as the family gets what it needs. Table 15-1 describes some of the roles of social workers, child-life specialists, chaplains, and nurses in caring for families needing palliative care, and dotted lines are important to note for delineation, to represent clearly overlapping functions. Sourkes and colleagues offer a complete picture of the multiple professionals who may also play a role in supporting children with life-limiting conditions and their families.³

TABLE 15-1 Discipline-Specific Roles Related to Family Relationships

Role	Strategies
Social Work	• Provide individual counseling and brief psychotherapy with school-aged child and adolescent • Provide family counseling • Facilitate family-team conferencing • Provide initial crisis counseling • Offer referrals to support groups, bereavement groups, counseling • Collaborate with medical and case management team regarding discharge planning • Provide information and referrals for resources, including care-giving resources, financial and legal needs, advance directives • Assist with client advocacy and navigating the system

Role

Strategies

Social Work

• Provide individual counseling and brief psychotherapy with school-aged child and adolescent

• Provide family counseling

• Facilitate family-team conferencing

• Provide initial crisis counseling

• Offer referrals to support groups, bereavement groups, counseling

• Collaborate with medical and case management team regarding discharge planning

• Provide information and referrals for resources, including care-giving resources, financial and legal needs, advance directives

• Assist with client advocacy and navigating the system

Child Life

• Facilite effective coping through play, preparation, education, and self-expression activities for child and siblings

• Provide emotional support for families

• Encourage optimum development of children facing a broad range of challenging experiences, particularly those related to healthcare and hospitalization

• Provide information, support, and guidance to parents, siblings, and other family members, understanding that a child’s well-being depends on the support of the family

• Educate caregivers, administrators, and the general public about the needs of children under stress

Pastoral Care

• Assess spiritual needs of families

• Coordinate notification of spiritual leaders of child’s and family’s choosing

• Provide counseling for child and family

• Assist with decision making

Nursing

• Pay attention to physical and emotional pain and symptom management needs of child and family

• Coordinate care across settings, providing continuity of care

• Facilitate integrative approaches to care, including complementary and alternative interventions

• Assist family and team decision making and their understanding of the various treatment options

• Offer referrals to other members of the interdisciplinary team, as needed

• Assist with understanding symptoms of illness, provision of care, treatment options

Team conflict

Given that by their very nature multidisciplinary teams involve several individuals representing various specialties, it is not surprising that occasionally differences of opinion may emerge on how certain palliative care issues should be addressed. In resolving these, it can be useful to incorporate several principles. First, not all conflict is bad and often it can serve a useful purpose. Through regular conferencing on children under their care, team members may find that what appears to be conflict is actually a misunderstanding of details concerning a child’s prognosis or the risks and possible benefits of a proposed course of action. Related to this, addressing conflict through this type of dialogue first requires isolating the issue, reaching agreement on what the apparent conflict is about, and then seeking resolution if the conflict is real. Second, many palliative care decisions are objectively complex and nearly all are emotionally distressing. In such situations, decision-making is an iterative phenomenon in which the process is often critical to the outcome. Again, regular clinical conferences offer a forum where differences of opinion can be discussed openly and early before they create confusion among extended members of the clinical team and the family. Third, it is important to be both transparent to the family but to present, whenever possible, unambiguous care recommendations that represent a team consensus. Where differences of opinion remain, it may be the case that more than one option is reasonable for the family to choose. Rather than framing this for the family as a team conflict, care should be taken not to portray specific team members in opposition to each other, but to focus on the fact that the team recognizes more than one reasonable option exists and supports the parents in choosing as they think best. Finally, team member differences can sometimes be resolved by keeping the focus of recommendations on the well-being of the child and family in question. This may appear obvious, but it is not rare for conflict among team members to lose its proper context and appear intractable, but be resolved through refocusing the discussion on the patient. Unifying all the above is the need for excellent communication among team members, which is regular, frequent, and forthright.

Communication

When a child is facing a life-threatening condition, communication with the family is a critical tool that healthcare providers must use to ensure that the best decisions are being made for and with the child. Palliative care decisions such as limiting further aggressive treatments, signing. Do Not Resuscitate/Allow Natural Death (DNR/AND) orders, entering Phase I trials, providing palliative chemotherapy, or withdrawing life support represent just a few of the many choices that families are often required to make. Parents become the surrogate decision makers because pediatric patients are unable to legally make treatment decisions for themselves unless the child is an emancipated or mature minor. Ideally, the patient’s preferences, hopes, desires, and goals should all be included as part of the decision-making process. However, this does not always occur in practice. Consequently, families are left to make palliative-care decisions for their child and they may feel unprepared to do so without the continued empathic support and communication from and with the interdisciplinary team.³⁷ Thus, a critical function of communication involving the child and the parent or responsible adult is to solicit the child’s core values and preferences as they relate to end-of-life decision making. Ideally, these should be sought in advance through critical discernment and explicit discussion as the prognosis for recovery diminishes, well before death becomes imminent and difficult decisions must be implemented.

It is widely accepted that high-quality pediatric palliative care include effective and ongoing communication with the family that supports their wishes and engages them as partners in the decision-making process.^2,³⁸ However, there are instances of families being asked to make care decisions before they completely understand the diagnosis or present condition of their loved one.³⁷ Studies of family members who have had a child die in the PICU all suggest that healthcare providers can continue to improve their communication with the families of dying patients.³⁹^–⁴² Some institutions have begun to use family-centered language such as “allow natural death” when discussing end-of-life care decisions. PICU practitioners indicate that this terminology can sometimes be ambiguous but has the potential to ease difficult discussions for families.⁴³ Healthcare providers and families need to be allies in communication in pediatric palliative care to ensure that families have questions answered and understand all care options before making crucial decisions for their child. With that understanding, healthcare teams still need to keep the focus on well-being of the patient, not what makes parents feel better or less guilty.

Collaborative communication

The decision-making process can potentially be eased when family members are given the opportunity to engage in collaborative communication with healthcare providers. Collaborative communication is defined as the exchange of cooperative verbal and nonverbal messages between two or more parties that are committed to working toward a common goal.^44,⁴⁵ Parties who engage in collaborative communication discuss shared interests and common goals while simultaneously exhibiting mutual respect and compassion for one another.⁴⁴ As a result, parties involved in the collaborative interaction are able to foster a supportive environment that encourages high levels of commitment,⁴⁶ satisfaction,⁴⁷ and coordination among all party participants.

Collaborative Decision Making

Family members faced with difficult palliative care decisions welcome the opportunity to make shared decisions with healthcare providers by engaging in collaborative communication when treatment options are presented. Specifically, family members would rather take the time to walk through the different palliative care options with healthcare providers instead of being told that a particular course of treatment was the best way to proceed without further consideration.³⁷

The following parental experience illustrates how important collaborative decision making is to family members faced with making palliative care decisions for their loved one.

Author Deborah Dokken experienced collaborative decision making when she and her husband were presented with the option to transfer their daughter, Abby, to another hospital’s PICU after a 5½ month stay in one NICU. Deborah said “Although the decision to move Abby was difficult, it was a shared decision made with healthcare providers who she and her husband trusted.” Deborah also added that she and her husband were given enough time to think about the difficult decision and were encouraged to ask questions about the possible transfer without feeling rushed. Although Deborah and her husband experienced collaborative decision making when deciding to transfer their daughter to the PICU, Deborah also experienced how it felt for an intensivist to make a decision about Abby’s care without her input. Deborah stated that the intensivist said, “The way I treat babies like your daughter is long-term ventilation.” Deborah recalled that, “The intensivist announced the course of treatment instead of posing options or asking questions, or having a discussion of any sort.”¹⁷

Contrasting the two different types of decision-making opportunities that the Dokken family experienced demonstrates how important it is to family members that they are given the opportunity to engage in collaborative decision making with healthcare providers. Families do not want to make such crucial decisions alone, nor do they want to be told what is best for their child. Instead family members are most satisfied when given the time to communicate collaboratively with healthcare providers about the best care options for their child. Thus, family members must not only be informed about the prognosis and treatment of their child but also given the opportunity to engage in detailed conversations with healthcare providers that explore treatment options to ensure families make the best decision for their loved one.

Collaborative decision-making also implies supporting medical decision-making by the child in the context of his or her family. As a child matures and gains decision-making capacity, he or she will become increasingly central in making important choices about end-of-life care. Especially for older children and adolescents, particularly those who have gained substantial medical experience through chronic illness, the child should be involved in a developmentally appropriate way in decisions concerning continuation of disease-directed treatment. The child should also be involved in what supportive care interventions may have adverse as well as beneficial effects and how remaining time will be spent. Again, depending on pre-existing family dynamics, parents may need to be guided in allowing their minor child to have a major, if not decisive, role in these choices. If their children have not been encouraged to develop personal autonomy through life decisions, it will be difficult for the family to embrace this approach at end of life. For this reason, it is useful for care providers to model good practice for the parents and promote decision-making experiences for the child beginning early in his or her care. Simple steps for this can include:

• Directing initial medical questions to the child during clinical encounters,

• Listening carefully to the child and acting on the information provided,

• Endeavoring to have the child’s assent for interventions being considered,

• Providing graduated opportunities for the child to exercise choice over appropriate aspects of their care.

The goal is to reach the point where the family can embrace a decisional role for the child that maximizes his or her personal autonomy and dignity at end-of-life.

As is the case in communication, opportunities exist for conflict to develop within families over medical decision making by the child.

End-of-Life and Palliative Care Family Conferences

Family conferences enable families to make difficult decisions about palliative care options with the guidance and support of healthcare providers.³⁷ During these family meetings, healthcare providers and family members engage in collaborative communication that explores a variety of treatment options and considers all opinions, concerns, or worries in order to devise a medical plan that families and healthcare providers can support.⁴⁴ Reaching a consensus of care between family members and healthcare providers often takes time but ensures that all voices are heard and questions are raised before important decisions are made about end-of-life care for the patient.

Furthermore, family conferences have been shown to incorporate the strategies parents have recommended, such as clearer and more frequent communication with healthcare providers, to enhance communication and ultimately improve palliative and end-of-life care.³⁷ Additionally, studies have shown that family conferences help to reduce regret or guilt that family members feel after making crucial end-of-life decisions for their child.³⁷

Conducting palliative and end-of-life family conference

Healthcare teams should consider the timing of palliative family conferences to provide the most benefit to the child. Ideally, this conference should occur in anticipation of the child’s deterioration or impending death, not in a time of crisis. This is why it can be so helpful to introduce palliative care early in the treatment trajectory so that the team and family have a shared understanding of goals of care.

Before proceeding with family conferences it is helpful for healthcare providers to review the five steps that Feudtner ⁴⁴ designed to ensure that family meetings are organized and successful: planning, beginning, dialogue, concluding, and actions and follow-up.

Providing Family Psychosocial Support and Enhancing Family Resilience

When a child is diagnosed with a life-threatening or life-limiting condition, the family is often overwhelmed, confused, and struggling to maintain or re-establish a sense of equilibrium.^2,³ Simultaneously, most families are immediately calling in sources of support, mobilizing resources and using all of their pre-existing strengths to support the child and each other. Interdisciplinary pediatric palliative care teams can play a critical role in enhancing family resilience in this difficult time. One of the starting points for this is to assess both the strengths and challenges that the family has and to bring those to the awareness of the family and healthcare team. While providing empathic support to the distressing news of the child’s diagnosis, the team can also begin to help the family identify their resources and resiliency.

In order to best support the family, the interdisciplinary team must truly work as a collaborative, coordinated, and compassionate team that is giving the same messages to the child and the family. Teamwork between various disciplines can be a struggle and communication is critical. Families feel frightened and less supported when they sense that the team is in disagreement or conflict. Ideally, an interdisciplinary pediatric palliative team will have many specialty disciplines that can include medicine, nursing, social work, psychology, psychiatry, child life, chaplaincy, rehabilitative services, educational support, art and music therapists, and supportive staff.³ When the team is functioning well, the sense of support can enhance a family’s functioning and increase their abilities to cope with their child’s illness.

Siblings should be encouraged to be as involved in their brother’s or sister’s care as they want to be. They can also have opportunities to participate in their normal school and extracurricular activities and peer groups. Siblings benefit from support groups and contact with other siblings who have been through similar experiences. Young children need to know that they are not responsible for their sibling’s illness or their parent’s distress. It can be very helpful to identify a safe adult who is designated specifically to support the sibling other than a parent. This person can be a teacher, family member, neighbor, friend, or healthcare professional. Child-life specialists and social workers can offer specific targeted support to siblings. Use local and national programs such as Supersibs (www.supersibs.org) to support siblings as well.

The interdisciplinary healthcare team can play a significant role in helping families by identifying family fears, challenges, loss and illness history as well as sources of strength and resilience. Pediatric palliative care teams can specifically listen to and support members of the family including grandparents and extended family. Healthcare professionals can empower the family to speak with children about their concerns and hopes and help the family identify the child’s strengths, supports, and sources of resilience. Pediatric palliative care teams function as a witness to the trauma that families endure and can react with true compassion to their suffering and survival. As this family stated:

“We were made to feel as though we were part of a big family while we were there. Everyone cared for our son as though he were their own. In my opinion, that is what makes a good caregiver a great one.”⁴⁸

Family resilience can be fostered during times of stress, illness, trauma, and challenge.⁴⁹ Walsh identified three key domains of family functioning that relate to family resilience: some belief systems, organizational patterns, and communication processes. Belief systems that seem to foster resilience are those that include a positive outlook, a sense of making meaning out of struggle and a focus on transcendence or spirituality.⁴⁹ For families caring for a child who is ill, this may imply that fostering realistic hopefulness and including discussions about spirituality and meaning making could be helpful tools to assist in the growth and wellness. Walsh indicated that a family’s resilience can be enhanced by organizational patterns that display flexibility, connectedness and adequate social and economic resources. Interdisciplinary healthcare teams should continue to help families identify their natural sources of support, access critical financial resources, and maintain their attachments and sense of being a family facing struggle together. Finally, Walsh found that family communication that was categorized by clarity, open emotional expression, and collaborative problem solving fostered family resilience. Pediatric palliative care is ideally defined as providing clear, compassionate, collaborative information and decision making that encourages the expression and support of the child’s and family’s unique emotions and needs within their cultural and historical context. Knowing that this approach has the capacity to enhance the resilience of families should motivate all interdisciplinary pediatric palliative care providers.