Young adult palliative care: challenges and opportunities.

Review Article American Journal of Hospice & Palliative Medicine® 2015, Vol. 32(1) 101-111 ª The Author(s) 2013 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909113510394 ajhpm.sagepub.com

Young Adult Palliative Care: Challenges and Opportunities Jennifer K. Clark, MD1, and Karen Fasciano, PsyD2

Abstract Young adulthood is a time of immense growth and possibilities. As a result, it is also a time when serious illness can have profound effects. This review examines the current data pertinent to young adult palliative care and discusses the challenges and opportunities where palliative medicine can enhance the care provided to this growing and vulnerable population. From the data, 2 primary themes emerged (1) ongoing young adult development not only generates unique biologic disease burdens and clinical treatment options but also requires frequent assessment and promotion and (2) binary health care systems often leave young adults without access to developmentally appropriate health care. Given its interdisciplinary approach, palliative care is uniquely poised to address the challenges known to caring for the seriously ill young adult. Keywords young adult, emerging adult, adolescents and young adults, palliative care, hospice, end-of-life care

Introduction Over the last few decades, emerging developmental theory has demonstrated that the road to adulthood is lengthening for some young adults (YAs; roughly aged 18-39).1-3 For these YAs, several factors including social reform and increased access to higher education have delayed the previous socially defined roles marking adulthood, financial independence, marriage, and parenting.1 Sandwiched between adolescence and mature adulthood, young adulthood embodies the evolution of self-realization through the establishment of independence, social competence, and the formulation of intimate relationships. The developmental tasks are complex: issues of self-identity, evolving interdependence, intimacy, and the redefinition of family roles are all layered on continued physical and cognitive growth. As a result, young adulthood is a time of great potential yet instability.1 This instability consequently leads to a particular set of burdens for YAs living with serious illness (Table 1). Palliative care (PC) data explicitly addressing the unique needs of YAs are sparse. However, disease-based models of care, such as oncology, have identified YAs as a distinct patient population and the associated literature suggests that PC can significantly impact the care of seriously ill YAs. The following review article introduces young adulthood to PC literature by examining the current data pertinent to YA PC and discussing the challenges and opportunities where PC can enhance the care provided to this growing and vulnerable population.

Search Methods A broad review of the literature was conducted, aiming to assess current PC practices for YAs. CINAHL, Medline, and

PsychINFO were accessed for years 2000-present. The following key words were employed: young adult, young adulthood, emerging adult, emerging adulthood, young people, adolescents and YAs , PC, terminal care, end-of-life care, withholding treatment, and hospice. Studies included were those articles found in the PC literature explicitly referring to the YA population and, if they specifically focused on YA PC issues, those articles outside the PC literature. Retrieved articles’ reference lists were also examined for studies that met inclusion criteria. Additionally, online searches of specific PC journals were conducted. These included Advances in Palliative Medicine; European Journal of Palliative Care; Internet Journal of Pain, Symptom Control and Palliative care; Journal of Hospice and Palliative Nursing; Progress in Palliative Care; and Palliative and Supportive Care. Additionally, current YA development researchers were contacted for input.4 Several studies that did not meet the criteria yet provided insightful information are included in the following discussion and references. Given the limited amount of literature, anecdotal evidence has also been reviewed.

1

Departments of Internal Medicine and Pediatrics, University of Oklahoma, School of Community Medicine-Tulsa, OU Center for Palliative Care, Tulsa, OK, USA 2 Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Boston, MA, USA Corresponding Author: Jennifer K. Clark, MD, Departments of Internal Medicine and Pediatrics, University of Oklahoma, School of Community Medicine-Tulsa, OU Center for Palliative Care, 4502 E. 41st Street, Tulsa, OK 74135, USA. Email: [email protected]

Downloaded from ajh.sagepub.com at USD & Wegner Health Science Information Center on May 7, 2015

American Journal of Hospice & Palliative Medicine® 32(1)

102 Table 1. Demands of Illness in the Face of YA Developmental Issue.

Ongoing Young Adult Development

Developmental issues

Demands of illness

Intimacy Invulnerability Independence Control

Isolation Vulnerability Dependence Uncertainty

Generally, early young adulthood is the period of time following adolescence when an individual experiences maximum physical function, identity exploration, self-focused agendas, and wide-open possibilities.1 This phase of physical, cognitive, psychological, social, and spiritual growth engenders a time of both excitement and uncertainty, where YAs can explore possibilities available to them in love and work.1 Eventually, this period gives way to later young adulthood. Described by developmental psychologist, Erik Erikson, the later stages of young adulthood are a time of intimacy resulting in the emotional and physical commitment to social, educational, career, and partner affiliations.2 Although chronological age is a factor, it is not the determinant of understanding a YA’s development. Therefore, Table 4 emphasizes young adulthood as a spectrum by noting characteristics seen in the early stages relative to those recognized later. Young adults living with serious illness must navigate this already complex time in life with the added burden of integrating their patient identity into the picture. The basic process of human development in young adulthood is founded on the evolving relations between individuals and context: we move through a relational spectrum of dependence, independence, and finally interdependence.3 For the YA living with serious illness, this progression is altered by the needed dependence on others for medical care leaving the YA at high risk of inadequate development for future adult roles and the propensity for treatment to be compromised. The literature gives heavy weight to the impact that ongoing development has on caring for YAs. Using the framework of the normative elements of YA development, the following outlines the impact the physical, cognitive, psychological, social, and spiritual development has on domains of YA PC.

Abbreviation: YA, young adults.

Results A total of 56 articles were reviewed and 21 met the criteria. Analysis of the data revealed 2 primary issues found in the palliation of YAs: (1) ongoing YA development is not only impacted by serious illness, it also greatly impacts the care of YAs and (2) YAs must navigate fragmented health care delivery models rendering a care gap that frequently leaves YAs without access to appropriate care. Key articles are summarized in Table 2.5-25

Discussion The literature demonstrates that we are just beginning to understand the challenges and opportunities in the care of YAs facing serious illness. Young adulthood is at the crossroads where childhood disease transitions into adult-like patterns. Of the children with special health care needs, 90% are now living past their 21st birthday, and nearly 500 000 of these YAs are entering the adult health care system on a yearly basis; therefore, living with serious illness in young adulthood is no longer a rare phenomenon.26 For example, the median life expectancy for patients living with cystic fibrosis is now 36.8 years, and we find similar numbers for those YAs living with complex congenital heart disease and Duchenne muscular dystrophy.27-29 Additionally, the onset of acute, serious illness is also not uncommon in young adulthood. As an example, the National Cancer Institute reports that YAs have a higher incidence of cancer than those under the age of 15, and the survival rates of patients in this population have not kept pace compared to their older and younger counterparts.29 Furthermore, HIV remains one of the top 10 causes of death for YAs.30 Analysis of the most current death data provides a concrete example of the complexity of illness plaguing this population.30 Table 3 displays the concept that YAs do represent a separate population to consider, as their morbidity and mortality are different than those who are older and younger. Interestingly, it also appears that the changes in the causes of death mirror YA evolution through the developmental continuum: we see that lifestyle choices made in adolescence and early young adulthood begin to impact mortality by late young adulthood and early mature adulthood. As noted earlier, ongoing development and the binary nature of the health care system are the 2 primary issues found in caring for the YA. The following discussion further explores these issues and provides strategies for PC providers in their approaches to YAs facing serious illness.

Physical. Physical development defines this time as the peak reproductive and sexual years, as the stabilization of hormonal changes and the cessation of growth velocity give way to a time of maximum physical function. Consequently, YAs living with serious illness may have a delay or an alteration in physical and/or sexual development. Physical changes associated with the disease can be demoralizing for YAs, as evolving selfidentity is rooted in the physical growth associated with becoming a mature adult. PC providers need to be aware of these phenomena and be available for frequent, interdisciplinary assessments and plan adjustments, addressing the possible threats to hormonal, sexual, and reproductive health through direct management and/ or consultation that supports the YA promotes the associated key developmental tasks.31 Additionally, anticipated physical changes, especially those related to appearance, should be discussed well in advance with ongoing education and facilitation through future transitions.32 Clinically, this issue is most apparent for PC providers when managing symptom control for YAs. YAs experience a more intense symptom burden than other age groups.7,9,14,16,25,33-43


Clark and Fasciano

103

Table 2. Summary of Review Articles Specific to YAPC. Author Grinyer A, Thomas C5 Dominica FS6

Grinyer A, Thomas C7 Maunder EZ8

King N, Barclay B9 Thomas, DM10

Title

Year

Journal

Narrative data from parents of YAs living with 2001 Int J Palliat Nurs. cancer. Primary themes include 2001 independence, normalcy, sexuality/fertility, Apr;7(4):162-4, medical decision making 166-70 Description of the first hospice facility Douglas House: a ’respice’ for young people 2003 Eur J Cancer. 2003 dedicated to serving YAs Dec;39(18):266970 The importance of place of death in young 2004 Mortality. 2004 Narrative data from parents of 18- to 25-yearadults with terminal cancer 9:114-131 olds who have died of cancer, specifically discussing the importance of place of death Outline of the gap of PC services between the The challenge of transitional care for young 2004 Br J Nurs. 2004 pediatric and adult sectors people with life-limiting illness May 27-Jun 9;13(100):594596 Description of the PC needs in Yas, especially Caring for young adults with rare neurological 2007 Eur J Palliat Care. those with neurologic issues conditions 2007;14(5):200203 Adolescents and young adults with cancer: the 2007 Palliat Support Care. Outline of Adolescent and Young Adult Oncology (AYA-O) history and challenges challenge 2007 Jun;5(2):173-174 Introduction of AYA-focused advanced care How I wish to be remembered: the use of an 2008 J Palliat Med. 2008 planning to the PC literature Dec;11(10):1309advance care planning document in 13 adolescent and young adult populations Young adults with cancer: the effect of the illness on parents and families

Wiener L, Ballard E, Brennan T, Battles H, Martinez P, Pao M11 Montel S, Place of death of adolescents and young adults 2009 Palliat Support Care. Laurence V, 2009 with cancer: first study in a French Copel L, Mar;7(1):27-35 population Pacquement H, Flahault C12 Millar B, Emerging adulthood and cancer: how unmeet 2010 Palliat Support Care. Patterson P, needs vary with time-since-treatment 2010;8:151-158 Desille N13 Wein S, Pery S, Zer A14

Pritchard S, Cuvelier G, Harlos M, Barr R15 Cohen-Gogo S, Marioni G, Laurent S et al16 Pritchard S, Cuvelier G, Harlos M, Barr R17 Doug M, Adi Y, Williams J et al18 Fraser LK, Aldridge J, Manning S et al19

Main findings

Role of palliative care in adolescent and young 2010 J Clin Oncol. 2010 adult oncology. Nov 10;28(32):481924 Palliative care of young adults: an issue which 2011 Indian J Palliat Care. needs higher and better awareness 2011 Sep;17(3):173-4

Qualitative data looking at the death experiences of French AYAs diagnosed with cancer. Narratives outline barriers to parent–YA communication regarding death Quantitative needs-based assessment demonstrating increased stress and anxiety with higher level of unmet needs. Needs fluctuate with duration of treatment AYA case histories describe the unique PC of this population living with cancer

Commentary on the importance of PC in YAs with cancer

Retrospective study evaluating patterns in the End of life care in adolescents and young adults 2011 Eur J Cancer. 2011 AYA cancer experience at end of life Dec;47(18):2735with cancer: experience of the adolescent 41 unit of the Institut Gustave Roussy Palliative care in adolescents and young adults 2011 Cancer. 2011 May with cancer 15;117(10 Suppl):2323-8 Transition to adult services for children and young people with palliative care needs: a systematic review Hospice provision and usage amongst young people with neuromuscular disease in the United Kingdom

Original article describing Canadian guidelines to caring for AYAs living with cancer

2011 Arch Dis Child. 2011 Review article demonstrating no PC transition Jan;96(1):78-84 services data exists. Transition services are usually disease specific 2011 Eur J Paediatr Neurol. Survey describing hospice usage for AYA patients diagnosed with progressive 2011 neuromuscular disease like Duchenne Jul;15(4):326-330 Muscular Dystrophy (continued)



104 Table 2. (continued) Author Howk T, WasilewskiMasker K20 Scott R21 Katusiime C22

Wiener L, Zadeh S, Battles H et al23 Barling JA, Stevens JA, Davis KM24 Grossberg RI, Blackford M, Friebert S, Benore E, Reed MD25

Title

Year

Journal

Main findings

Palliative care for adolescents and young adults: 2011 Journal of Adolescent a pediatric perspective and Young Adult Oncology. 2011; 1:11-12 Transition and caring for young adults: are you 2011 Prog Palliat Care. part of the solution? 2011;19(6):299303 Palliation in adolescent and young adult hiv 2012 J Palliat Med. 2012 medicine-an emerging need Nov;15(11):11671168 Allowing adolescents and young adults to plan 2012 Pediatrics. 2012 their end-of-life care Nov;130(5):897905 Adolescents and young adults (AYAs) transition into palliative care: a narrative analysis of family member’s stories of place of death Direct care staff and parents’/legal guardians’ perspectives on end-of-life care in a longterm care facility for medically fragile and intellectually disabled pediatric and young adult residents

Commentary on the need for AYA PC in oncology, especially during transition from pediatric to adult settings Summary of the Children’s Hospice Association Scotland’s seminar dedicated to the care YAs Letter to the Editor outlining the need for YA PC in the setting of HIV Medicine Introduction and validation of Voicing My Choices, an advance care planning guide for AYAs

2012 J Palliative Care Med. Narrative inquiry looking at the experience of 2012; 2(7):1-7 12- to 25-year-olds living with cancer and their families as they transition to PC specifically at end of life 2012 Palliat Support Care. Survey describing the experiences of parents 2012 Aug; 10:1-8 and aides caring for YAs in a long-term care facility

Abbreviation: YAPC, young adult palliative care.

Table 3. Center for Disease Control and Prevention.a 10–14 1 2 3 4 5 6 7 8

Unintentional injury Malignant neoplasms Suicide Homicide Congenital anomalies Heart disease Chronic low respiratory disease Benign neoplasms

9 Cerebrovascular 10 Septicemia a

15–24 Unintentional injury Homicide Suicide Malignant neoplasms Heart disease Congenital anomalies Cerebrovascular

25–34 Unintentional injury Suicide Homicide Malignant neoplasms Heart disease HIV Diabetes mellitus

Influenza and Cerebrovascular pneumonia Diabetes mellitus Liver disease Complicated pregnancy Congenital anomalies

35–44

45–54

Unintentional injury Malignant neoplasms Heart disease Suicide Homicide Liver disease Cerebrovascular

Malignant neoplasms Heart disease Unintentional injury Suicide Liver disease Cerebrovascular Diabetes mellitus

HIV

Chronic low respiratory disease HIV Viral hepatitis

Diabetes mellitus Influenza and pneumonia

Leading Causes of Death by Age Group, United States–2010.

This is especially true at the end of life. This phenomenon is multifactorial and not limited to the physiologic basis of unique disease, as it is seen within several disease models. Longer trajectory of end-stage disease and the complexities of development in the YA population are presumed to be the largest contributors to the heightened intensity of symptoms. Consequently, YAs may require pharmacologic therapies at higher dose ranges often layered with several adjuvant medications. Beginning doses are in traditional adult ranges, but rapid titration is frequently required. Anecdotally, it also appears that YAs often accept heavy symptom burdens to maintain their independence and forego the sedating or

debilitating side effects of the treatments. Frequent assessments of interventions and rapid titration are key elements to address the notable symptoms. Additionally, incorporating nonpharmacologic modalities of care such as physical and occupational therapy (which also assists with ongoing physical development), meditation, mindfulness, and hypnosis lends well to the management of symptoms, as it provides a locus of control for the YA.44 Cognitive. Brain development has been demonstrated to continue through the late 20s.45 Increased connections between regions of the brain, myelination, and synaptic pruning


Clark and Fasciano

105

Table 4. Key Elements of Normative YA Development. Key normative developmental elements Domain Physical

Cognitive

Early

Later

Completion of physical maturation with ongoing structural development of the brain Peak reproduction Abstract thinking with limitations Evolving ability to make decisions based on future consequences Appreciation for the impact on others More integration of cognitive and emotional data

Brain development complete Strong but declining reproduction

Refinement of adult-like processing Complex abstract analysis Big picture thinking Capacity for shaping versus following rules and roles Self-evaluation and correction Refinement of self-identity Psychological Identity exploration Ability to see self and others Self-focused with a growing ability to see others’ perspective Developing leadership capacities in family ‘‘Hot and cold’’ thinking4 and work Seeking mentors Significant vulnerability to onset of mental health difficulties Less vulnerable to the onset of mental health difficulties Moving from independence to interdependence Social Moving through dependence to independence Adapted, calculated risk behavior Risk taking Defining own nuclear family Renegotiating relationships with parents and family Evolved intimacy skills with the Practicing with relationships, intimacy and sexual exploration establishment of one intimate relationship Living with instability More accepting of adult responsibilities Searching for job fit and higher education Struggling with managing increasing responsibilities Commitments to work and love Childrearing and parenting Caring for aging parents Spiritual/ Development of beliefs and practices Established beliefs and practices existential Can talk about death and afterlife exploration Know death as a human condition

especially in the prefrontal cortex have been seen on imaging of the YA brain. These changes result in increased executive functioning and abstract thinking including greater skills in calibration of risk and reward, problem solving, prioritizing, planning, self-evaluation, and regulation of emotions.4 Early YAs living with serious illness often struggle with the complexities and nuances of medical decision making, as the presences of illness and the effects of treatment may inhibit progression along this developmental spectrum or even prompt a regression to more concrete or child-like thinking. Therefore, there is the potential for an underdeveloped, albeit growing, capacity to exercise autonomy, cope with uncertainty, and assess treatment options. Reinforcement of YA autonomy is achieved through a balanced approach, where the clinician provides support, fosters independent thinking, and offers assurance that the YA is not alone in his decisions. Using this shared decision-making model, the PC provider can better manage clinical uncertainty and nonadherence related to YA care. As noted in several of the disease-based models, the role of PC provider is most influential in the formation and maintenance of advance care plans.9,11,14,17,20,23,25 The use of a YAdirected end-of-life care discussion readiness tool followed by the completion of the YA version of The Five Wishes, Voicing My Choices, has been documented to be effective in the early YA population.23 Using a readiness tool, assisting with

the completion of a YA-sensitive advance directive and scheduling frequent assessments via clinic, hospital, or homebased media avenues, PC providers can appreciate and better address the anticipated fluctuations in YA goals of care, especially those related to evolving life situations and maturing capacity to make decisions. Whether a YA is navigating end of life or living with chronic illness, the task is complex. Ultimately, PC providers are creating the milieu for a YA patient to traverse the development continuum while feeling confident in their medical choices. For those YAs who are cognitively impaired and unable to provide input to their medical decision making, it is crucial that appropriate surrogates are identified and encouraged to help their YA develop to their full potential and create care plans that match the value system in which the YA lives.25,46-48 Psychological. Psychological growth during young adulthood is exponential and complex, as YAs are refining their selfidentity and beginning to relate that self to others. Additionally, YAs are developing their understanding of emotion and honing effective emotional coping mechanisms. As a result, young adulthood is a time of emotional instability, adjustment, and growth. Consequently, when compared to their older and younger counterparts, YAs demonstrate a markedly higher level of the onset of mental health issues.49 Disorders of impulse control and emotional regulation peak; eating



106

Self esteem Body image

Ferlity

Emoons Life Disrupons

Future plans

for YA

Trust in health

Family dynamics

Career/ educaon

Financial

Figure 1. Components of young adult (YA) health and identity formation impacted by illness.

disorders, while more common in adolescence, are still present in young adulthood; and substance abuse is also very prevalent. Most importantly, young adulthood is commonly a time for the onset of major mental illnesses such as schizophrenia and depression. Resultantly, suicide rates are highest during the YA years.30 For the YA facing serious illness, the combination of isolation from peers due to medical burden, lack of mastery with complex emotions, difficulty coping with uncertainty, and a sense of little to no control all contribute toward mood or anxiety difficulties. Unfortunately, depression and anxiety can go easily undiagnosed or overlooked and may be attributed to the disease process. In YAs, shame and stigma about expressing these difficulties can lead to a greater symptom burden before seeking help, if at all.50 Consequently, help is variably accepted and psychotropic medications that may provide relief are sometimes seen as an assault to the YA identity, as many YAs have a strong sense that they should be able to control these symptoms and that somehow counseling and/or medications will make them be someone different. Figure 1 demonstrates the various components of YA health and identity formation impacted by illness. A significant psychological challenge for ill YAs is that of loss. Losses, especially related to the aforementioned physical changes, can be difficult in this population, as it greatly impacts ongoing identity formation and self-image.32 Anticipatory grief is proportional to the loss of each person’s perceived life yet to be lived, and the YAs facing a complex illness may have many years not fully lived or future years lost due to early death.51 Not only can the burden of anticipatory grief be quite high, but it also may be difficult for YAs to process and/or articulate.52

Furthermore, as YAs with a serious illness must integrate their role and identity as a patient into their identity formation, their progression from independence and eventually interdependence may be altered by dependence on others for medical care. The impact of illness on psychological development is quite variable where a YA can fall on a continuum between ‘‘maturity beyond their years’’ to regression to child-like thinking and behaviors.53 Additionally, medical nonadherence and substance abuse or misuse of pain or anxiety medications is occasionally encountered in the world of YA care and can be a sign that the YAs are in emotional distress. The literature does substantiate that YA psychosocial needs are not being met adding validity to the importance of this issue.13,50 The PC provider must be aware and open to the full spectrum of psychological development, as YAs may test limits by challenging the rules and culture of the medical setting, consequently, compromising their adherence to medical regimens. In the medical setting, examining the reasons for risk-taking behaviors such as sensation seeking, impulsivity or poor judgment, negative affectivity, genetic vulnerability, or adverse environmental factors can lead to deeper understanding and appropriate intervention. It is important to remember that for YAs taking risks can be positively associated with increased levels of independence, responsibility, and autonomy.54 Any discussion of risk-taking behaviors will need to validate these positive elements. Specifically, PC providers should ask direct questions about the reasons for nonadherence or abuse/misuse and provide clear assignment of responsibilities and consequences. There are no tools that measure anxiety and depression in YAs, let alone a YA with serious illness. In medical populations, the use of single-item screening questions such as ‘‘Are you depressed?’’ can be useful in ruling depression but may not be detailed enough for the YAs who may not know what it is to be depressed. The previous question combined with the question ‘‘Have you lost pleasure in activities?’’ may be a construct more easily understood for YAs.55 Multidimensional scales of depression that do not rely heavily on somatic symptoms can also provide quick screens for depression.55 For anxiety, a single question such as ‘‘Are you worried?’’ or measures such as the Generalized Anxiety Disorder 7 (GAD-7) have been used with success in medical populations.56 Additionally, techniques of motivational interviewing such as exploring ambivalence, enhancing self-efficacy, and affirming prior successes can be helpful with medical behavior change.57 The YAs may also benefit from psychological interventions that promote awareness of coping styles and increased coping skills including strategies for problem solving and communication.58 Coping skills for emotional distress are often successfully addressed with principles from cognitive behavioral therapy including stress management and relaxation skills, behavioral activation and distraction strategies, and thought exercises that look at cognitions that are contributing most to distress.44 Young adults also benefit from strategies for getting to acceptance of their medical situation; thus, acceptance and commitment therapy have been used successfully in chronic illness and pain.57-61


Clark and Fasciano

107

Legacy formation is also important to address in YAs facing their own mortality. Early YAs may want to be remembered perhaps not by the length or importance of their accomplishments but by a unique mark on the world and feeling like they made a difference in some unique way. Later YAs, especially those with children, may focus on what their children will remember and how not to be forgotten in their eyes.62-64 Actively addressing the unique and changing needs of the YA patient is essential to gaining insight and establishing a framework for self-reflection. Offering anticipatory guidance, labeling grief, and providing empathy about developmentally appropriate losses helps the patient to feel understood and respected. Social. Young adulthood is a time of defining one’s values through the exercising of life goals in education, careers, and relationships. The YA–peer interactions combined with exploration of individual possibilities promotes successful accomplishment of developmental tasks. Redefining relationships with family of origin and planning for families of choice are also significant social tasks during young adulthood. YAs have increased responsibility for finances, community, and planning for the future both for themselves and for others with whom they are interconnected. In the face of illness, clinical experience has demonstrated that YAs must learn to practice these newly defined values outside traditional relationships of school and workplace, as these avenues may not be available while undergoing treatment. First, disclosure of illness can be difficult for many YAs. This is particularly so in the work arena and in new dating relationships. Responses of peers can be variable, and the uncertainty of the response is threatening to developing self-identity, especially the identity that has been impacted by illness. Second, who is considered of social importance for the YA can vary and may change over time. A YA’s support constellation is shared by friends and family, sometimes equally.5,14,17,24 Finally, providers need to be aware that YAs use the medical milieu to work on their developing communication, relationship, and advocacy skills. PC teams can assist YAs with exploration of alternative means to express their social competence. Values can be practiced in any setting and refocusing the YA on value-based living and modified goals may help with emotional distress.60,65 Encouragement of appropriate social engagement with support groups that promote interactions with same age peers as well as social networking via the Internet are healthy avenues for YAs to socially explore and assign meaning to their illness.66 The YAs benefit from first calling attention to their own struggles with how their identity has been impacted by illness and, second, developing strategies to cope with variable responses of others. Often YAs’ confidence in disclosure comes from having ‘‘stock’’ answers they can call on as well as helping to create situations where they are in control of the information that they share. Similarly, medical providers need to always be aware of who is in the room during communication and with whom they have permission to communicate.66,67 Direct

communication about relationship issues between provider and patient is very important, as it promotes normal development for the YA and sets clear expectations for the patient–provider relationship. Spiritual. Pinned to the lengthening of young adulthood, the spiritual and religious development of the YAs of today is markedly different than any other generation.1 Various researchers have found that YAs of today deem religious and spiritual beliefs very important, and these beliefs have been demonstrated to increase during this time.68 However, religious practice is lower in this generation than those of the past, as beliefs are exercised more in volunteer- and communitybased activities.68 Overall, young adulthood is a time when individuals often move from an immature acceptance of a belief with little self-reflection to a more personalized belief system, where they choose beliefs, values, and relationships important to their self-fulfillment and meaning making.69 Even without the complexities of illness, many YAs struggle with defining personal spiritual and religious beliefs and practices.1,68,69 As research is just beginning to understand YAs’ spiritual development, the impact of spiritual development on the face of serious illness is underappreciated. Many YAs attempt to articulate their capacity to understand their beliefs. The PC providers can facilitate ongoing conversations to assist in that development.68 Understanding a YA’s experience with death is also important to elucidate, as it informs personal death awareness, preconceived ideas, and/or identifies fears that may need to be addressed. It is the PC providers’ responsibility to assess progress, assist, and find resources for YAs, as they conceptualize their religious and spiritual identities while facing their own mortality.

Health Care System Burdens for YAs System issues have been shown to significantly contribute to the underlying causes in the health care disparities known to this population.6-10,12-22,24-25,70-78 The gap between pediatric and adult health care has created a binary health care system, where YAs are often lost to care. This gap is also seen in medical education where providers are ill equipped to address the unique needs of this population, as training is often directed by discrete adult-oriented or child-oriented programs.79-80 Binary Nature of Health Care Systems. As summarized in Table 5, the vast differences between the medical cultures of childoriented health care and adult-oriented health care pose a significant barrier to those attempting to navigate this chiasm.3,14,16,19,26,71-73 This binary nature creates a fractionated health care system, leaving YAs without a clearly defined medical home. Additionally, the current US health care system and its related insurance programs are ill equipped to care for YAs, as it leaves YAs at the highest risk of being uninsured and without options for developmentally appropriate care.74-76



108 Table 5. Comparison of Child- and Adult-Oriented Health Care Attributes.26 Binary health care system Child Family Centered Conservatism Interdisciplinary Development

Adult Autonomy Quest for answers Multidisciplinary Senescence

Since the mid-1990s, there has been a growing effort to better understand the concept of transition medicine, the process of moving a patient from child-oriented medical care to adult-oriented medical care. These robust data demonstrate that YAs are vulnerable, and theoretical consensus in the medical community has just recently delineated an evidence-based approach to address the care of YAs as they negotiate this gap in the medical continuum.26,77,78 The transition movement has spearheaded the establishment of YA-focused care models and facilities.6,16-17,21,26,50 Disease-specific initiatives, like those seen in oncology, have fortified the efforts to provide developmentally appropriate medical care to YAs, especially those living with serious illness. Because of these efforts, we are beginning to see systemic changes. Most notably, YAs have been identified as a unique and vulnerable population worthy of legislation authored in the Affordable Care Act.75-76 The PC literature describes the opportunities for adult and pediatric PC providers to collaborate, specifically noting the issue of transition.8,18,21,26,70 The interdisciplinary nature of PC lends itself to assisting YAs in organizing a cadre of caregivers and providers to build a bridge across the gap, ensuring that YAs make the most of the medical system and maintain health insurance status, thereby assuring access to developmentally appropriate care. Provider Burden and Education. The medical care of YAs is extremely rewarding, as it is a place to bear witness to unparalleled growth in the face of adversity. However, helplessness is more profound when there is such tragedy in the amount of potential life lost.51,52 Consequently, the care of YAs is emotionally taxing and time intensive. Professional boundaries are more difficult to set, as YA patients pull for more of a relationship with medical staff. In academic settings, especially, many of the providers are also YAs, thus lending to the complexity of decision making for both young providers and their YA patients. The YA patient may see their provider as a peer and may withhold information to better fit in or inappropriately project emotional attachment. Young providers may recognize their own vulnerability, and this emotional response may cloud decision making, as well. Additionally, the older provider may identify with the role of parent where the emotions related to the potential loss of a child can overwhelm and complicate decision making. Both the pediatric and the adult literature have demonstrated that the majority of providers do not feel comfortable caring for

YAs with complex illness.26,79-80 Reasons for this discomfort included the fear of not meeting the psychosocial needs of YAs and their support networks, incompetency related to ageappropriate training, and possibly needing to address disability or end-of-life issues early in the relationship. This is a reflection on the lack of medical education, system resources, and psycho–social–emotional training required to provide developmentally appropriate care to YAs. The PC skill set has the potential to assist in addressing several of these needs, therefore defining a role for PC teams in the relief of provider burden in the care of YAs.

Conclusions The care of YAs is extremely rewarding and complex, full of highs, lows, and vast possibilities. The PC providers have the time and communication skills to address many of the issues that YAs face when living with a serious illness. Colleagues in several subspecialties have called upon PC to develop YA-dedicated care models. Meanwhile, national and international health initiatives are beginning to focus efforts on the YA population, especially those living with serious illness. As PC providers, we can offer a developmentally aware approach that incorporates advanced decision making based on YA cognitive abilities, acknowledges and treats the high symptom burden, promotes this time of psychological and spiritual growth, and, ultimately, empowers and honors this special time of life. Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The authors received no financial support for the research, authorship, and/or publication of this article.

References 1. Arnett JJ. Emerging adulthood: the winding road from the late teens through the twenties. New York, NY: Oxford University Press; 2004. 2. Erikson EH. Identity, youth, and crisis. New York, NY: WW Norton; 1968. 3. Lerner RM, Castellino DR. Contemporary developmental theory and adolescence: developmental systems and applied developmental science. J Adolesc Health. 2002;31(6 suppl): S122-S135. 4. Simpson R. MIT Young Adult Development Project. 2008. Available from: http://hrweb.mit.edu/worklife/youngadult. Accessed August 29, 2012. 5. Grinyer A, Thomas C. Young adults with cancer: the effect of the illness on parents and families. Int J Palliat Nurs. 2001;7(4): 162-164,166-170. 6. Dominica FS. Douglas house: a ‘respice’ for young people. Eur J Cancer. 2003;39(18):2669-2670.


Clark and Fasciano

109

7. Grinyer A, Thomas C. The importance of place of death in young adults with terminal cancer. Mortality. 2004:9(2); 114-131. 8. Maunder EZ. The challenge of transitional care for young people with life-limiting illness. Br J Nurs. 2004;13(100): 594-596. 9. King N, Barclay B. Caring for young adults with rare neurologic conditions. Eur J Palliat Care. 2007;14(5):200-203. 10. Thomas DM. Addolescents and young adults with cancer: the challenge. Palliat Support Care. 2007;5(2):173-174. 11. Wiener L, Ballard E, Brennan T, Battles H, Martinez P, Pao M. How I wish to be remembered: the use of an advance care planning document in adolescent and young adult populations. J Palliat Med. 2008;11(10):1309-1313. 12. Montel S, Laurence V, Copel L, Pacquement H, Flahault C. Place of death of adolescents and young adults with cancer: first study in a French population. Palliat Support Care. 2009;7(1):27-35. 13. Millar B, Patterson P, Desille N. Emerging adulthood and cancer: how unmet needs vary with time-since-treatment. Palliat Support Care. 2010;8(2):151-158. 14. Wein S, Pery S, Zer A. Role of palliative care in adolescent and young adult oncology. J Clin Oncol. 2010;28(32): 4819-4824. 15. Bhatnagar S, Joshi S. Palliative care of young adults: an issue which needs higher and better awareness. Indian J Palliat Care. 2011;17(3):173-174. 16. Cohen-Gogo S, Marioni G, Laurent S, et al. End of life care in adolescents and young adults with cancer: experience of the adolescent unit of the Institut Gustave Roussy. Eur J Cancer. 2011; 47(18):2735-2741. 17. Pritchard S, Cuvelier G, Harlos M, Barr R. Palliative care in adolescents and young adults with cancer. Cancer. 2011;117(10 suppl):S2323-S2328. 18. Doug M, Adi Y, Williams J, et al. Transition to adult services for children and young people with palliative care needs: a systematic review. Arch Dis Child. 2011;96(1):78-84. 19. Fraser LK, Aldridge J, Manning S, et al. Hospice provision and usage amongst young people with neuromuscular disease in the United Kingdom. Eur J Paediatr Neurol. 2011;15(4): 326-330. 20. Howk T, Wasilewski-Masker K. Palliative care for adolescents and young adults: a pediatric perspective. J Adolesc Young Adult Oncol. 2011;1(1):11-12. 21. Scott R. Transition and caring for young adults: are you part of the solution? Prog Palliat Care. 2011;19(6):299-303. 22. Katusiime C. Palliation in adolescent and young adult HIV medicine-an emerging need. J Palliat med. 2012;15(11): 1167-1168. 23. Wiener L, Zadeh S, Battles H, et al. Voicing My Choices1: allowing adolescents and young adults to plan their end-of-life care. Pediatrics. 2012;130(5):897-905. 24. Barling JA, Stevens JA, Davis KM. Adolescents and young adults (AYAs) transition into palliative care: a narrative anaylsis of family member’s stories of place of death. J Palliative Care Med. 2012;2(7):1-7.

25. Grossberg RI, Blackford M, Friebert S, Benore E, Reed MD. Direct care staff and parents’/legal guardians’ perspectives on end-of-life care in a long-term care facility for medically fragile and intellectually disabled pediatric and young adult residents. Palliat Support Care. 2012;10:1-8. 26. Mennito SH, Clark JK. Transition medicine: a review of current theory and practice. South Med J. 2010;103(4):339-342. 27. Yankaskas JR, Marshall BC, Sufian B, Simon RH, Rodman D. Cystic fibrosis adult care: consensus conference report. Chest. 2004;125(1 suppl):S1-S39. 28. Reid GJ, Webb GD, Barzel M, McCrindle BW, Irvine MJ, Siu SC. Estimates of life expectancy by adolescents and young adults with congenital heart disease. J Am Coll Cardiol. 2006; 48(2):349-355. 29. Bleyer A, Barr R. Cancer in young adults 20 to 39 years of age: overview. Semin Oncol. 2009;36(3):194-206. 30. Center for Disease Control. National Vital Statistics System. 10 Leading Causes of Death by Age Group, United States. 2010. Available from: http://www.cdc.gov/injury/wisqars/leadingcauses. html. Accessed September 30, 2013. 31. Levine J, Canada A, Stern CJ. Fertility preservation in adolescents and young adults with cancer. J Clin Oncol. 2010;28(32): 4831-4841. 32. Sno¨bohm C, Friedrichsen M, Heiwe S. Experiencing one’s body after a diagnosis of cancer-a phenomenological study of young adults. Psychooncology. 2010;19(8):863-869. 33. Chang VTS, Zhao F, Wagner LI, et al. ACSO Annual Scientific Meeting: symptom burden and change among adolescent/young adult (AYA) cancer patients with breast, lung, colorectal, or prostate cancer. J Clin Oncol. 2011;29(15 suppl):Abstract 9064. 34. Bourke SJ, Doe SJ, Gascoigne AD, et al. An integrated model of provision of palliative care to patients with cystic fibrosis. Palliat Med. 2009;23(6):512-517. 35. Philip JA, Gold M, Sutherland S, et al. End-of-life care in adults with cystic fibrosis. J Palliat Med. 2008;11(2):198-203. 36. Robinson WM. Palliative and end-of-life care in cystic fibrosis: what we know and what we need to know. Curr Opin Pulm Med. 2009;15(6):621-625. 37. Sawicki GS, Sellers DE, Robinson WM. High treatment burden in adults with cystic fibrosis: challenges to disease self-management. J Cyst Fibros. 2009;8(2):91-96. 38. Sawicki GS, Dill EJ, Asher D, Sellers DE, Robinson WM. Advance care planning in adults with cystic fibrosis. J Palliat Med. 2008;11(8):1135-1141. 39. Selwyn PA, Forstein M. Overcoming the false dichotomy of curative vs palliative care for late-stage HIV/AIDS: ‘‘let me live the way I want to live, until I can’t’’. JAMA. 2003;290(6): 806-814. 40. Wilkie DJ, Johnson B, Mack AK, Labotka R, Molokie RE. Sickle cell disease: an opportunity for palliative care across the life span. Nurs Clin North Am. 2010;45(3):375-397. 41. Freyer DR, Kuperberg A, Sterken DJ, Pastyrnak SL, Hudson D, Richards T. Multidisciplinary care of the dying adolescent. Child Adolesc Psychiatr Clin N Am. 2006;15(3):693-715. 42. Freyer DR. Care of the dying adolescent: special considerations. Pediatrics. 2004;113(2):381-388.



110 43. Feudtner C, DiGiuseppe DL, Neff JM. Hospital care for children and young adults in the last year of life: population-based study. BMC Med. 2003;1:3. 44. Moorey S, Greer S. Oxford guide to CBT for people with cancer, 2nd ed. New York, NY: Oxford University Press; 2012. 45. Casey BJ, Tottenham N, Liston C, Durston S. Imaging the developing brain: what have we learned about cognitive development? Trends Cogn Sci. 2005;9(3):104-110. 46. Friedman S, Gilmore D. Factors that impact resuscitation preferences for young people with severe developmental disabilities. Intellect Dev Disabil. 2007;45(2):90-97. 47. Graham RJ, Robinson WM. Integrating palliative care into chronic care for children with severe neurodevelopmental disabilities. J Dev Behav Pediatr. 2005;26(5):361-365. 48. McClinton P, Byrne J. Working in partnership to achieve optimal end-of-life care for people living with neurological conditions. Int J Palliat Nurs. 2009;15(4):160-161. 49. McGorry PD, Purcell R, Goldstone S, Amminger GP. Age of onset and timing of treatment for mental and substance use disorders: implications for preventive intervention strategies and models of care. Curr Opin Psychiatry. 2011;24(4):301-306. 50. Zebrack BJ, Block R, Hayes-Lattin B, et al. Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients. Cancer. 2013;119(1):201-214. 51. Yalom ID. Staring at the sun: overcoming the terror of death. San Francisco, CA: Jossey-Bass; 2008. 52. Trevio KM, Maciejewski PK, Fasciano K, Prigerson HG. Grief and life disruption in young adults with advanced cancer. JAYAO. 2012;1(4):1-5. 53. Bellizzi KM, Smith A, Schmidt S, Keegan TH, et al. Positive and negative psychological impact of being diagnosed with cancer as an adolescent or young adult. Cancer. 2012; 118(20):5155-5162. 54. Reynolds EK, Magidson JF, Mayes L, Lejuez C. Risk taking behaviors across the transition from adolescence to young adult. In: Grant JE, Potenza MN, eds. Young adult mental health. New York, NY: Oxford University Press; 2010. 55. Kroenke K, Spitzer R, Williams J. The patient health questionaire2: validity of a two item depression screen. Med Care. 2003;41(11): 1284-1294. 56. Levin T, Alici Y. Anxiety disorders. In: Holand J, William Breitbart, eds. Psycho-Oncology. New York, NY: Oxford University Press; 2010: 324-331. 57. Trevino KM, Maciejewski PK, Fasciano K, et al. Coping and psychological distress in young adults with advanced cancer. J Support Oncol. 2012;10(3):124-130. 58. Sansom-Daly UM, Peate M, Wakefield CE, Bryant RA, Cohn RJ. A systematic review of psychological interventions for adolescents and young adults living with chronic illness. Health Psychol. 2012;31(3):380-393. 59. Gregg JA, Callaghan GM, Hayes SC, Glenn-Lawson JL. Improving diabetes self-management through acceptance, mindfulness, and values: a randomized controlled trial. J Consult Clin Psychol. 2007;75(2):336-343. 60. Hayes SC, Strosahl K. A practical guide to acceptance and commitment therapy. New York, NY: Springer; 2004.

61. Forman, Herbert JD, Moitra E, Yeomans PD, Geller PA. A randomized controlled effectiveness trial of acceptance and commitment therapy and cognitive therapy for anxiety and depression. Behav Modif. 2007;31(6):772-779. 62. Swick SD, Rauch PK. Children facing the death of a parent: the experiences of a parent guidance program at the Massachusetts general hospital cancer center. Child Adolesc Psychiatr Clin N Am. 2006;15(3):779-794. 63. Rausch P, Muriel A. Raising an emotionally healthy child when a parent is sick. New York, NY: McGraw-Hill; 2006. 64. Nilsson ME, Maciejewski PK, Zhang B, et al. Mental health, treatment preferences, advance care planning, location, and quality of death in advanced cancer patients with dependent children. Cancer. 2009;115(2):399-409. 65. Naar-King S, Suarez M. Motivational interviewing with adolescents and young adults. New York, NY: Guildford Press; 2011. 66. Zebrack B, Isaacson S. Psychosocial care of adolescent and young adult patients with cancer and survivors. J Clin Oncol. 2012; 30(11):1221-1226. 67. Young B, Dixon-Woods M, Windridge KC, Heney D. Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents. BMJ. 2003;326(7384):305. 68. McNamara-Barry C, Nelson L, Davarya S, Urry S. Religiosity and spirituality during the transition to adulthood. Int J Behav Development. 2010;34(4):311-324. 69. Fowler JW. Stages of faith: the psychology of human development and the quest for meaning, 1st ed. San Francisco, CA: Harper & Row; 1981. 70. Meier DE, Beresford L. Pediatric palliative care offers opportunities for collaboration. J Palliat Med. 2007;10(2):284-289. 71. Rosen D. Between two worlds: bridging the cultures of child health and adult medicine. J Adolesc Health. 1995;17(1): 10-16. 72. Freyer DR. Transition of care for young adult survivors of childhood and adolescent cancer: rationale and approaches. J Clin Oncol. 2010;28(32):4810-4818. 73. Freyer DR, Brugieres L. Adolescent and young adult oncology: transition of care. Pediatr Blood Cancer. 2008;50(5 suppl): 1116-1119. 74. White PH. Access to health care: health insurance considerations for young adults with special health care needs/disabilities. Pediatrics. 2002;110(6 pt 2):1328-1335. 75. Collins SR, Robertson R, Garber T, Doty MM. Tracking trends in health system performance: young, uninsured, and in debt: why young adults lack health insurance and how the affordable care act is helping: findings from the commonwealth fund health insurance tracking survey of young adults, 2011. Issue Brief (Commonwealth Fund). 2012;14:1-24. 76. Bleyer WA. Potential favorable impact of the affordable care act of 2010 on cancer in young adults in the United States. Cancer J. 2010;16(6):563-571. 77. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care


Clark and Fasciano

111

transitions for young adults with special health care needs. Pediatrics. 2002;110(6 pt 2):S1304-S1306. 78. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, Transitions Clinical Report Authoring Group. Clinical Report: Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011;128(1):182-200.

79. Peter NG, Forke CM, Ginsburg KR, Schwarz DF. Transition from pediatric to adult care: internists’ perspectives. Pediatrics. 2009; 123(2):417-423. 80. Okumura MJ, Heisler M, Davis MM, Cabana MD, Demonner S, Kerr EA. Comfort of general internists and general pediatricians in providing care for young adults with chronic illnesses of childhood. J Gen Intern Med. 2008;23(10):1621-1627.


Pediatric palliative care and pediatric medical ethics: opportunities and challenges.

Integrating palliative care in oncologic emergency departments: Challenges and opportunities.

Delivering palliative care to patients and caregivers in inner-city communities: challenges and opportunities.

Canadian paediatic palliative care: Challenges and promises.

Adding value as young radiologists: challenges and opportunities, part 1.

Transition to adult services for children and young people with palliative care needs: a systematic review.

Palliative care answers the challenges of transitioning serious illness of childhood to adult medicine.

Accountable care organizations and the allergist: challenges and opportunities.

Opportunities to maximize value with integrated palliative care.

Palliative Care of Adult Patients With Cancer.

Research challenges in palliative and end of life care.

Data Challenges for Planning and Evaluating Palliative Care Programs.

Ethical challenges and solutions regarding delirium studies in palliative care.

Palliative care in critical illness: challenges for research and practice.

Measuring Comprehensiveness of Primary Care: Challenges and Opportunities.

Non-preventive care: challenges and opportunities for adolescent HPV vaccination.

Managing posthospital care transitions for older adults: challenges and opportunities.

The HIV care continuum in Latin America: challenges and opportunities.

The human microbiome: opportunities and challenges for clinical care.

Polyhydroxyalkanoates, challenges and opportunities.

2014: Challenges and opportunities.

The challenges of dying: lessons for palliative care.

The challenges of providing quality palliative care to all.

Mapping the literature: palliative care within adult and child neurology.