The word “palliate” means to alleviate, to mitigate, or to make the effects of something less harsh or intense. Palliative care is a medical subspecialty that has arisen to care for patients with terminal illnesses which focuses on symptom control and psychosocial challenges of the patients and their families to alleviate suffering. The World Health Organization (WHO) defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” [2–4, 6, 8–10]. The Center to Advance Palliative Care (CAPC) describes palliative care as “see[ing] the person beyond the disease” and as being “provided by a team of palliative care doctors, nurses and other specialists who work together with a patient’s others doctors to provide an extra layer of support” [3–5, 7, 9–11]. This multidisciplinary approach to patient care addressing physical symptoms and psychological distress and helping to clarify the goals of care for the patient as well as supporting the patient’s family is the core of the palliative care mission. Patients can benefit from palliative care at any stage of a terminal diagnosis, not necessarily only when there are no remaining treatments for the underlying condition. These services assist in affirming life by supporting the patient and family’s goals including dignity throughout the course of their disease, dying process, and death [12].

Resources and availability of palliative care teams and services vary, as does the location of care. The gaps in care experienced on both sides of the healthcare system between pediatric and adult medicine throughout AYA oncology can be particularly impactful when delivering palliative care. It is well recognized that cultures differ between pediatric and medical oncology settings as do resources [13]. While pediatric care has been described as nurturing, family centered and often enriched with supportive care and centralized services, the availability of palliative care and multidisciplinary services can be more limited versus medical oncology. In addition, the family-centric pediatric approach can limit the autonomy needed by AYAs and offered within the adult-based system. Ideally adult and pediatric palliative care providers coordinate to provide care, especially for the younger or transitioning AYA. However, regardless of setting or resources, the benefit of a multidisciplinary palliative care approach is widely appreciated [1, 6, 7]. The team ideally includes nursing, medical staff (palliative medicine doctor, oncologist, advanced practice providers), social work, psychology, and spiritual support [5]. Other support team members such as music and art therapists and nutritionists are beneficial. In both the pediatric and adult settings, the inclusion of a child life specialist can be critical in communication and legacy building with the AYA patient or their children.

Though palliative care services can be delivered in multiple settings, most palliative care is currently administered in the hospital by a palliative care consultation team [14]. Many hospital intensive care units and oncology units, both adult and pediatric, now routinely integrate specialized palliative care to help with symptom management and addressing goals of care. When available, ambulatory palliative care clinics can also be integral in transitioning care for patients originally seen in the hospital and helping to support patients who are continuing treatment for their cancer despite a poor prognosis. And, as the home is often the preferred location for end-of-life care and death, the inpatient or outpatient palliative care team can also help transition care directly to the patients in their homes or nursing homes often through hospice [15, 16]. Regardless of the members of the team or the location of care, a palliative care team taking care of AYA patients should be familiar with the specific developmental needs of AYAs.

While the Centers for Disease Control (CDC) defines adolescence as ages 10–19 and young adulthood as ages 20–24 years, AYA oncology defines the age range as 15–39 years, a span of three decades [9]. Although the general philosophies of palliative care apply to AYAs, developmental considerations are unique to this group which is also experiencing a multitude of “normal” life transitions [4, 5]. However, the interaction of psychosocial, emotional, physical, and existential issues is consistent and essential to consider in all AYAs [5]. What is also consistent is an “adult” understanding of death which can seem in direct conflict to the feeling of immortality often portrayed [5]. In fact, an adult understanding of death is usually achieved by age 9 [9]. Understanding, nurturing, and encouraging the normal development of AYAs while also acknowledging the abnormality of death at this age is the unique challenge of caring for this population [17].

Introducing palliative care to the AYA population carries with it unique challenges, in an already-challenging specialty. In general, palliative care is an often-misunderstood service confused with end-of-life care, with this misconception more prevalent in pediatric versus adult medicine [20]. While palliative care focuses on the relief of symptoms caused by a terminal illness, it is more accurately “the art and science of lessening physical, psychological, emotional, and existential suffering” [21]. This is a daunting yet crucial understanding in introducing care to the AYA oncology patient.

The adult literature has demonstrated the benefit of introducing palliative care early in the course of diagnosis and treatment [22, 23]. Early introduction of these services can result in increased quality of life, decreased anxiety and depression, and decreased utilization of hospital resources and chemotherapy at the end of life, and patients may actually live longer [22]. In 2011 the American Society of Clinical Oncology (ASCO) published a provisional clinical opinion recommending that both standard oncology care and palliative care be considered early for “any patient with metastatic cancer and/or high symptom burden” [24]. While this may be applicable for older patients or within the field of medical oncology, within pediatric oncology, the presence of metastatic disease is not necessarily predictive of risk for morbidity or mortality. In the same year, the CAPC published consensus guidelines to help identify hospitalized patients who could benefit from palliative care [25]. The first step is identifying patients who have a life-limiting condition. Patients who have frequent admissions for the same condition, an admission for difficult-to-control symptoms, complex care needs at home, or a decline in function at admission should prompt a palliative care consultation. In addition, patients who have a prolonged intensive care unit stay, have a lack of clarity in goals of care, or have challenges with consensus with family or staff regarding treatment decisions including resuscitation preferences, use of non-oral feeding or hydration, or other major medical treatment decisions are likely to benefit from a palliative care consultation. Providers caring for patients who may undergo a tracheostomy, feeding tube placement, initiation of dialysis, and other device placements may consider a palliative care consultation to help patients and their families with decision-making.

The unique challenges of the AYA population in regard to introducing palliative care include their developmental stage, their physical differences from older adults, their psychosocial needs, and the need to care for their parental units, young spouses, and young children. However, within this span of these three decades (defined as ages 15–39), common threads of AYAs include a tremendous amount of life transition and that health, not morbidity and mortality, is the norm.

George suggests that the crux of the approach to the AYA must be rooted in autonomy and control for the AYA. He states: “ Whilst it may sit uncomfortably, when facing the truth that a young person is dying, there is a strong case to make that observing autonomy, even when it is clearly not in the best interest of the patient may be more important than the consequence of a shorter life” [17]. Clearly, in the AYA population that is less than 18 years of age, this can be confounded by parental rights. However, regardless of age, the AYA must have autonomy and some control when treatment and palliative decisions are made. So when introducing the concept of palliative care and its team, it is imperative to allow the AYA the space to make decisions regarding how he/she will spend the remaining time they have.

The key tool in introducing palliative care to the AYA is honest communication [8]. Providers need to balance being realistic and devoid of false hope with being positive and hopeful. This dichotomy is hard and certainly changes as the disease marches on. This can be accomplished by developing a relationship with the AYA early in treatment and cultivating trust throughout various stages of the illness. There is also tremendous therapeutic power in the willingness to sit in loving silence, as uncomfortable as that may be to providers who are used to discussing interventions and plans. Sometimes inaction is preferable to action – “Don’t just say something, stand there.” Let the patient and family talk about what they think the plan and intervention should be.

The parent role, especially for adolescents, must be considered carefully when introducing palliative care. Evidence shows that how a child dies is of critical importance in the parents’ further lives [26]. From the moment of diagnosis, there is bereavement; so, for the parent, palliative care starts at diagnosis. Throughout the illness trajectory, there are varied stages of bereavement: grieving what the young person is missing, grieving the loss of the family dynamic, and grieving the potential of life without their child. This is precisely why palliative care can be so helpful to the family from the time of diagnosis. If we refer back to the definition of palliative care as being the art and science of lessening suffering, then this is a desperate need families have as soon as their family member is diagnosed with a life-threatening illness.

Formal tools exist to aid in the introduction of palliative care. The Comfort Care Communication Tool (CCCT) was developed by the pediatric palliative care service at the Children’s Hospital and Regional Medical Center in Seattle [8]. It is designed to be introduced by a multidisciplinary team and includes a four-quadrant design to document medical issues, quality of life, contextual issues, and patient preferences. An additional tool, Voicing My CHOiCES™ can be used to initiate communication regarding end-of-life care and is further described later in this chapter [27] (See Sect. 31.5 “End-of-Life Care”).

When introducing palliative care to the AYA, it is imperative to begin the process early in order to develop a trusting relationship. It is equally imperative to allow the AYA to be as autonomous as possible with respect to decision-making. Finally, truth-telling and transparency are paramount and the building block for all future goals. The most negligent thing that can be done as providers is refuse to engage the reality of death or wait until the patient is at the end stage of illness. We need to do better. By working as a team, introducing palliative care early, and listening to AYAs with cancer, suffering can be ameliorated and true palliation provided throughout their disease course.

Every year, more than 11,000 AYAs, 15–34 years of age, die from cancer and other life-threatening conditions [27]. Unfortunately due to provider discomfort with approaching end-of-life discussions, these conversations are often delayed in being initiated or avoided all together. Many healthcare providers feel uncomfortable, unprepared, and unskilled in having end-of-life discussions. AYAs can be perceived as not being competent to make such decisions, further adding to the exclusion in end-of-life planning [27]. Given the broad age range and developmental variability, end-of-life discussions present unique challenges because what is appropriate at one end of the continuum for an adolescent can be completely inappropriate for an adult in their 30s [27]. However, not approaching these topics risks contributing to emotional isolation during the dying process [28].

Palliative care provides comfort care for any individual who is experiencing a life-threatening illness from diagnosis to death [22, 32, 33]. Access to a multidisciplinary palliative care team is essential when managing the complex physical and emotional symptoms of AYAs living with cancer [1, 5–7]. These services assist in affirming life by supporting the patient and family’s goals including dignity throughout the course of their disease, dying process, and death [12]. The symptoms of cancer, its treatment, and its progression are determined by the cancer type and location as in any other age group. In younger AYAs, distressing physical symptoms have been reported in 89 % of patients receiving palliative care [3, 5]. Most patients experience multiple symptoms. The most common symptoms during palliative care are fatigue (57–86 %), decreased mobility and paralysis (76 %), pain (73 %), poor appetite (71 %), and dyspnea (6–21 %) [3, 5], though in the last week of life, dyspnea and pain may become more common [14].