This article will cover the special considerations, challenges, and opportunities presented by caring for adolescents and young adults with life-threatening illnesses when the possibility of transition to an adult care setting arises.
Key points
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Medical advancements have led to an increased prevalence of children with life-threatening illnesses who are also surviving longer.
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Adolescents and young adults (AYAs)with life-threatening illness experience unique vulnerabilities, complex health concerns, and, unfortunately, barriers to assessing health care.
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Many pediatric and adolescent patients with life-threatening illnesses age into adult care; thus, it is recommended that pediatric palliative care teams make timely transitions of care to appropriate young adult or adult services.
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Owing to the parent/family and patient attachment to pediatric providers, there may be feelings of reluctance and fear to leave behind health care providers who may have cared for years.
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Training can be 1 avenue for increasing providers’ comfort in working with AYAs with life-threatening illnesses.
Introduction
Adolescents and young adults (AYAs) represent a distinctive group of young people who are either experiencing, or have recently experienced a period of accelerated growth and change that bridges the complex transition from childhood to adulthood. It is often an unsettling period characterized by rapid hormonal changes, physical maturation, and cognitive and emotional development. The patterns of behavior AYAs adopt during this time may have long-term consequences for their health and quality of life. When the challenges that accompany a life-threatening illness are added to this already tumultuous developmental stage, the problem of transitioning from pediatric medical homes to adult medical homes becomes even more crucial. AYAs with life-threatening illness experience unique vulnerabilities, complex health concerns, and, unfortunately, barriers to accessing health care. For them, the process of transitioning from a pediatric medical home to an adult medical home is increasingly complex. The transition of AYAs with life-threatening illnesses is fraught with difficulties, and in some cases these difficulties lead to increased mortality during the transition period. This mortality is linked to a poor transition process. At the time of transition, patients struggle to form a relationship with members of their new medical home. Meanwhile, care plans and routine surveillance are disrupted by the lack of bridging communication from 1 medical home to the next.
In order to understand the scope of the nuances and challenges that come with caring for AYAs with life-threatening illness, it is important to begin with the parameters that define this group and the transition of health care. The Centers for Disease Control and Prevention (CDC) and the World Health Organization define adolescents as young people between the ages of 10 and 19 years. The CDC takes a step further and defines young adults as ages 20 to 24 years. Yet, professionals within oncology state that this age group actually includes individuals up to 39 years of age. With these ambiguities in the parameters that delineate this group of patients, the challenges that come with caring for them become clearer, especially with regard to transitioning their health care. Taking these definitions together, caring for AYAs with life-threatening illness consists of caring for a patient population that spans nearly 3 decades.
Transition of health care, has been defined as “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems.” When caring for a patient population that spans 3 decades, the problem of transitioning their care can seem insurmountable. AYAs with life-threatening illness have unique developmental and psychosocial considerations. Often caught between pediatrics and adult medicine, they have specific needs for support, communication, and involvement with their care that is rooted in their developmental, cognitive, and psychosocial needs.
Currently the medical community does not have either a defined method, or a systematic way to care for this patient population. Learning the developmental considerations and psychosocial needs and understanding the tools to transition to adult medical homes may help create such a system. Other considerations to help transition in this care period include introducing team members who are skilled in caring for children and young adults with life-limiting illness. The palliative care team may be especially useful in ensuring smooth transitions.
Introduction
Adolescents and young adults (AYAs) represent a distinctive group of young people who are either experiencing, or have recently experienced a period of accelerated growth and change that bridges the complex transition from childhood to adulthood. It is often an unsettling period characterized by rapid hormonal changes, physical maturation, and cognitive and emotional development. The patterns of behavior AYAs adopt during this time may have long-term consequences for their health and quality of life. When the challenges that accompany a life-threatening illness are added to this already tumultuous developmental stage, the problem of transitioning from pediatric medical homes to adult medical homes becomes even more crucial. AYAs with life-threatening illness experience unique vulnerabilities, complex health concerns, and, unfortunately, barriers to accessing health care. For them, the process of transitioning from a pediatric medical home to an adult medical home is increasingly complex. The transition of AYAs with life-threatening illnesses is fraught with difficulties, and in some cases these difficulties lead to increased mortality during the transition period. This mortality is linked to a poor transition process. At the time of transition, patients struggle to form a relationship with members of their new medical home. Meanwhile, care plans and routine surveillance are disrupted by the lack of bridging communication from 1 medical home to the next.
In order to understand the scope of the nuances and challenges that come with caring for AYAs with life-threatening illness, it is important to begin with the parameters that define this group and the transition of health care. The Centers for Disease Control and Prevention (CDC) and the World Health Organization define adolescents as young people between the ages of 10 and 19 years. The CDC takes a step further and defines young adults as ages 20 to 24 years. Yet, professionals within oncology state that this age group actually includes individuals up to 39 years of age. With these ambiguities in the parameters that delineate this group of patients, the challenges that come with caring for them become clearer, especially with regard to transitioning their health care. Taking these definitions together, caring for AYAs with life-threatening illness consists of caring for a patient population that spans nearly 3 decades.
Transition of health care, has been defined as “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems.” When caring for a patient population that spans 3 decades, the problem of transitioning their care can seem insurmountable. AYAs with life-threatening illness have unique developmental and psychosocial considerations. Often caught between pediatrics and adult medicine, they have specific needs for support, communication, and involvement with their care that is rooted in their developmental, cognitive, and psychosocial needs.
Currently the medical community does not have either a defined method, or a systematic way to care for this patient population. Learning the developmental considerations and psychosocial needs and understanding the tools to transition to adult medical homes may help create such a system. Other considerations to help transition in this care period include introducing team members who are skilled in caring for children and young adults with life-limiting illness. The palliative care team may be especially useful in ensuring smooth transitions.
Developmental considerations
According to the American Academy of Pediatrics (AAP), palliative care for children, adolescents, and young adults should be patient centered and family engaged, offering a respectful partnership that is concerned about quality, access, and equity. Specifically, the AAP recommends that the pediatric palliative care (PPC) team be committed to offering care across the age spectrum and life span. As many pediatric and adolescent patients with life-threatening conditions age into adult care, the AAP recommends that the PPC team make timely transitions of care to appropriate young adult or adult services. Transitions should take into account the unique developmental and familial needs of the patients and occur seamlessly so that the patient remains safely cared for. When AYA patients cannot be transitioned to adult care, the pediatric team must continue to provide care that respects the unique needs of these emerging young adults.
Developmental tasks
Adolescents and young adults with life-threatening illness encounter unique challenges as they face the developmental tasks of physical changes, autonomy, identity, cognition, and spirituality ( Table 1 ).
| Physical (Tanner) | Autonomy (Gilligan) | Identity (Erikson) | Cognition (Piaget ; Elkind ) | Spirituality (Fowler ; Puchalski ) | |
|---|---|---|---|---|---|
| Early (10–14 y) | Onset and tempo of pubertal changes vary Physical changes can lead to self-consciousness, embarrassment, or anxiety | Dependence | Am I normal? Comparing self to others, and evolving sense of self esteem | Concrete operational (black and white thinking), with a developing a use of logic | Mythical/literal; Extrinsic religiosity Literal meaning is given to religious symbols and stories; follow the religious belief system around them (family) |
| Middle (15–16 y) | Females mature before males Being an early developer or a late bloomer can have psychological impacts | Independence A stage of experimentation that may include limit testing and risk-taking behavior | Who am I? Forming a sense of self–what one wants to do or be |
| Synthetic/conventional Conformity to the same religious authority shared by family or peers |
| Late (17–19 y) | Adult physical appearance | Interdependence A growing recognition of reliance on and responsibility toward others | Who am I in relation to others? Asking this question leads to a sense of commitment, safety and care within relationships | Formal operational–abstract or hypothetical thinking | Intrinsic religiosity May have deeper reflection (even questioning) about their religious belief system |
Adolescents with chronic illness may experience delays in physical and sexual development of puberty. There may also be changes in body shape and function because of the illness or treatments for the illness (eg, hair loss, weight gain or loss, muscle weakness, disability/deformations, fatigue, shortness of breath). Such alterations may impact body image, may lead to concerns about sexual activity, and may directly or indirectly lead to sexual dysfunction.
With regard to autonomy, adolescents with a life-threatening illness may have increased dependence on their family when compared with their peers. Some will exert themselves to regain a sense control (such as through treatment nonadherence), while others with long-standing illness may have a degree of learned passivity. In response, some providers find it best to take a more authoritative approach, determining what is essential for health and for which there should be no compromise, and allow negotiation for issues that are not critical.
Identity formation is a critical part of adolescent and young adult development, and facing a life-threatening illness significantly impacts the emerging identity of AYAs. AYAs with cancer report a paradox of identity as they struggle to reconcile their previously known self with their “cancer identity.” This identity paradox can be seen when some adolescents become defined by their illness, and their identity shifts to that of a patient rather than of a teen who has an illness/condition.
Cognitively, even among healthy adolescents and adults, the capability for abstract thinking is strongly impacted by health status. And for the most ill of the adolescents, their future is determined by limitations rather than possibilities. By about the age of 9 years, an adult understanding of death is achieved. Death is defined by irreversibility, nonfunctionality, universality, and causality. With the development of abstract thinking, adolescents question the existential implications of death. Adolescents often continue to speak and plan as if there is no understanding of the reality of prognosis, and having survival goals is common (eg, wish trips, graduation, school dances, or other social functions). Providers should be aware and understanding of this psychological dynamic and not label it as pathologic.
Spiritually, recent literature suggests that AYAs with cancer struggle to make meaning and generate understanding of the spiritual aspects of their life-threatening condition. AYAs do exhibit evidence of personal growth, benefit-finding, and spiritual enhancement as they face their life-threatening conditions.
Isolation
Adolescents often experience significant isolation from their family members and peer group because of lengthy hospital stays or intensive treatment protocols. Isolation and alienation can cause significant emotional distress. This isolation may only increase if the adolescent needs to transition to a new care team as he or she ages out of pediatrics. AYAs need support and strategies to reinforce and enhance relationships with family, peers, and health professionals to reduce this isolation. D’Agostino and colleagues recognized that a salient aspect of AYA autonomy and identity development is the importance placed on peer group acceptance and peer relationships, and AYAs need to sustain a sense of connection to their peers when faced with difficult diagnoses and their associated treatment. In 1 study, AYAs with cancer (aged 16–22 years) identified social support (friends and health care providers) as their major coping strategy to deal with cancer, whereas family support was identified as their important source for emotional support.
Peer support programs assist AYA patients in establishing and maintaining relationships with their normal peers as well as with other AYAs with cancer, offer opportunities to achieve age-related developmental tasks (building interpersonal and problem-solving skills), and promote positive psychosocial growth. Peer support also provides AYAs with an opportunity to address some of their concerns, such as coping with uncertainty about the future, establishing autonomy while being increasingly dependent on family and friends, sexual identity, and infertility, thereby reducing feelings of social isolation. Studies of AYA patients have indicated that their needs for peer support remain unmet.
Advance planning, communication, and decision making
With the development and maturation of adolescence comes an increased role in health care decision making. According to the AAP, PPC clinicians should “facilitate clear, compassionate, and forthright discussions with (pediatric) patients and families about therapeutic goals and concerns, the benefits and burdens of specific therapies, and the value of advance care planning.” When adolescents and young adults are facing advance care decisions, they may need interventions that are geared toward their developmental needs. Based upon their growing autonomy and independence, AYAs may prefer more informed control in decisions about their care, having structured dialogues with their family and health care team about medical decisions, and opportunities for expression of spiritual concerns. Specific tools such as Voicing my Choices have been developed to assist AYAs, their families, and health care providers to think through options for care and for AYAs to communicate their preferences. Unlike the affiliated document Five Wishes, Voicing my Choices is not a legally binding document. However, it does encourage the AYA to choose a health care agent, which is especially important once the AYA turns 18. More information on these tools is available on these and other tools at https://www.agingwithdignity.org/ .
Decision making may be complicated by issues with competency and capacity. The distinction between the two are outlined in Table 2 .
The elements required for capacity include
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The patient has adequate awareness (understanding and appreciation) of disease and treatment options.
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The patient uses reasoning to make a choice.
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The patient makes a choice and communicates wishes.
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The choice is consistent with the patient’s goals and values.
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