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.