Abstract
Pediatric oncology care is inherently different from adult oncology. While adult facilities are patient-focused and legally required to respect the autonomy of competent adults, pediatric settings must manage the entire family from the onset of diagnosis. This reality is ingrained into pediatric healthcare culture as more and more children's hospitals embrace the concept of family-centered care. In dealing with families, pediatric oncology professionals grapple with family issues that pre-date a cancer diagnosis—from marital strife, sibling issues, and economic stressors to substance abuse, poverty, and mental illness. Psychosocial issues that exist during the active phase of treatment are often magnified at end-of-life, as families attempt to cope with unfamiliar emotional territory. The family-centered approach, which exists as a necessity in pediatrics, is also emerging as a model in adult palliative care that may be of specific benefit to AYAs.
AYAs face certain unique psychosocial stressors at end-of-life and may benefit from specific psychosocial interventions. While facing death at any age is extraordinarily difficult, there are special challenges to be acknowledged when young people face death as their independent life is just beginning. Adolescents and young adults crave autonomy and should be given choices about their care whenever possible. Since honest and open communication is crucial, care conferences can be a helpful tool. Maintaining and respecting a young person's privacy is also paramount. They should be given choices about things such as visitors and with whom information is shared. Adolescents often need support to deal with their feelings of anger. They often grieve the loss of relationships that are just beginning to form and should be encouraged to maintain connections to their peer groups whenever possible.
Ideally, parents and pediatric patients enjoy an open, honest, and trusting relationship. However, sometimes a parent's intrinsic desire to protect their child leads them to request that the medical team limit information that is conveyed to the patient. Often, parents feel ill-equipped to have an honest conversation with their adolescent about death. They may feel unsure of what words to use and how to field questions their child may have, making avoidance of these conversations and questions seem a preferable alternative. Parents often require specific support, coaching, and even practice to feel confident in this scenario.
Providers face an ethical dilemma when parents request that an older teenager be denied accurate information regarding the serious nature of their condition. Certainly, an adolescent of 15 to 17 years of age understands that death is permanent and irreversible. They are able to provide input into their plan of care and decision making, such as whether to continue curative treatment or pursue palliative care. To deny an adolescent, who technically has no legal authority to make his or her own treatment decisions, the ability to participate in care decisions is an ethical minefield and benefits from a multidisciplinary approach.
Another difficult transition point can be when the pediatric patient turns 18 years old but continues treatment in a pediatric facility. Appropriate conversations should occur regarding advance directives (living will, durable power of attorney for healthcare) and the choices that newly adult patients can make. However, it is not uncommon for adolescents who have received treatment for a life-limiting illness to have become more dependent on their parents compared to their peers. Thus, although an 18-year-old patient may be legally able to execute advance directives, few may do so, as they are accustomed to their parents making the decisions. Generally, parents are the default decision makers if an unmarried young adult patient is unable to speak for him- or herself. For this reason, it is important to facilitate honest communication regarding a young adult's wishes so that parents and the medical team are aware. If nothing else, this dialogue will reassure parents that they are indeed following their child's wishes should they ever be called upon to make decisions.
Positive physician communication with the patient and family is essential in palliative care. Honesty, respect, compassion, support, and accessibility are all critical during this phase regardless of whether it occurs in the pediatric or adult setting. It must also be recognized that each patient and family member is an individual. AYA patients have different degrees of dependence on their parents and different expectations for communication with their provider. It is often a challenge for pediatric providers to gauge the appropriate level of child–parent involvement, and they frequently err on the side of communicating more to the parent than the patient out of habit, whereas adult providers run the converse risk. The multidisciplinary approach encouraged in pediatrics can facilitate communication. While a positive relationship with the pediatric oncologist is crucial, it is often the nurses and psychosocial professionals who facilitate the appropriate level of communication with the patient and family.
Given the complex psychosocial issues that exist in providing palliative care for AYAs, it is beneficial that pediatric oncology treatment facilities are better staffed with psychosocial professionals than adult settings. Clinical social workers, psychologists, child life specialists, and chaplains are instrumental in providing multidisciplinary palliative care. Clinical social workers are adept at initiating and facilitating difficult conversations among families or between the medical team and patients or families; psychologists can assist when coping is complicated; child life specialists are skilled in providing developmentally appropriate end-of-life support, including legacy-making activities; and chaplains are expert at providing spiritual support to patients and families of all faith backgrounds.
When AYA patients are actively dying, treatment at a pediatric facility may offer some advantages. Children's hospitals may be able to offer more flexible care should a patient or family choose to come into the hospital to die. With less of a focus on length of stay, a family may be able to choose to receive inpatient end-of-life care for several days or weeks if home hospice care is not an option. Although hospice regulations are the same for patients of all ages, there is anecdotal evidence of more flexible care for AYA patients.
Despite the advantages of being cared for in a pediatric setting, pediatric healthcare as a whole has much progress to make regarding instituting formal palliative care programs. While palliative care programs have become embedded in adult healthcare settings, children's hospitals often lag behind in offering multidisciplinary comprehensive palliative care programs with a specialized provider. One of the barriers to hospice care at end-of-life can be that families are reluctant to transition to a new team of caregivers. Ideally, a palliative care program could provide seamless care from diagnosis through to end-of-life.
When the end-of-life comes too close to the beginning of life, specific medical and psychosocial needs must be met. Perhaps even more than other patients in the pediatric oncology setting, AYAs require specialized, coordinated physical and psychosocial interventions. While pediatric settings are often equipped with the philosophy and staff to meet these needs, there is still much work to be done. Research efforts dedicated to improving AYA survival are essential, but equal attention should be paid to caring for the patients that cannot be cured. This population deserves our best care, particularly when survival is not possible. Time, attention, and research dollars should be directed toward determining optimal evidence-based care for AYAs at end-of-life.