Between two worlds: Bridging the cultures of child health and adult medicine

J O U R N A L OF ADOLESCENT H E A L T H 1995;17:10-16

CONFERENCE

PROCEEDINGS

Between Two Worlds: Bridging the Cultures of Child Health and Adult Medicine DAVID ROSEN, M.D., M.P.H.

Dramatic advances in the ability to care for children with chronic illnesses and disabilities have prolonged life and improved well-being for many. What were once considered to be diseases of childhood-cystic fibrosis, spina bifida, cerebral palsy, and othe r s - m u s t now be thought of as diseases of childhood onset since the large majority of individuals with these conditions can be expected to attain meaningful adulthood. Unfortunately, the manner in which we deliver care to these young people has not kept pace with the care we have to offer. We continue to struggle in our current health care system to define how best to provide services to adolescents, young adults, and not-so-young adults with conditions of childhood onset. There is some agreement, though by no means broad consensus, that adolescents and young adults with chronic health conditions should at some point move from a child-oriented to an adult-oriented health care setting. This transition, from pediatric to adult-centered care, has been debated in the literature (1--3), explored in national conferences (4,5), modeled in demonstration and service projects (6,7),

From the University of Michigan Medical Center, Ann Arbor, Michigan. Address reprint requests to: David Rosen, M.D., M.P.H., University of Michigan Medical Center, Room 1924, Taubman Center, Box 0318, 1500 East Medical Center Drive, Ann Arbor, MI 48109-0318. Manuscript accepted March 15, 1995. This paper was commissioned for the working conference "Moving On: Transition from Pediatric to Adult Health Care" presented by the Center for Children with Chronic Illness and Disability, National Center for Youth with Disability, and the Keland Endowment Fund of the Johnson Foundation, September 9-11, I994. The conference was supported, in part, by the National Institute on Disability and Rehabilitation Research Grant #H133B90012 and the Maternal and Child Health Bureau G:,ant #MCJ275045. 1054-139X/95/$9.50 SSDI 1054-139X(95)00077-6

and codified in guidelines and standards of care (8,9). Nevertheless, despite some momentum over the past several years, there has been far too little progress in ensuring that adolescent and young adults with special health care needs have suitable pathways for transition to adult health care. Difficulties with the transition from the pediatric to the adult health care environment are not limited to adolescents with chronic conditions. For most adolescents, this transition is likely to be sudden or haphazard and to occur without preparation. Perceived as healthy, many adolescents and young adults will receive no regular health care for years at a time. After leaving their pediatrician, many will not find a medical home in the adult health care system until they are forced to do so by circumstances. In the meantime, primary care is neglected and acute care is obtained in free standing clinics, emergency departments, or not at all. Sadly, there is little guidance to be found in the transition experience of healthier peers. Neither do the official policies of professional organization provide direction. The American Academy of Pediatrics considers individuals 0-21 years of age to be within the purview of pediatrics. They note, however, that in "special circumstances," care beyond the age of 21 years may be optimally provided by pediatricians if mutually agreeable; chronic illness a n d / o r disability are offered as the prototype special circumstances (10). No mention is made of transfer of care or transition. Two subsequent policy statements from this Academy's Committee on Children with Disabilities are likewise mute on the topic of transition (11,12). The American College of Physicians, representing more than 77,000 internists in the United States, also

© Society for Adolescent Medicine, 1995 Published by Elsevier Science Inc., 655 Avenue of the Americas, New York, NY 10010

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explicitly included adolescents in the purview of internal medicine though no age limits are drawn (13). Recent College policies mandate that residency programs improve their training in adolescent health. There is no specific reference to the care of adolescents and young adults with chronic conditions, arguably the most obvious role for both general internists and internal medicine specialists. There are no official policies related to transfer of care or transition (Personal communication, American College of Physicians). The Society for Adolescent Medicine addresses the issue of transition directly in a recent position paper (14). The paper highlights the value of transition programs for adolescents with chronic conditions but acknowledges the paucity of data from which such endorsements are made. The Society recommends additional funding for transition efforts, research on the outcomes of transition programming, investigation of multiple transition models, and education of health professional students, trainees, and providers around transition issues. Missing still is practical information on "what works and why." The many issues that can impede transition to adult health care for young people with chronic conditions are complex, protean, and often idiosyncratic to communities, networks, or to individual providers. Obstacles to transition that cannot be overcome in one setting may be entirely absent in another. Barriers that seem insurmountable may become negligible over time. Nevertheless, the success or failure of transition frequently rests on the interaction of individual patients, their families and support systems, and their health care providers. The very best transition efforts occur when the young person, their family, and all of their health care providers are each active participants in an organized, purposeful transition plan. Such a plan not only challenges the young person to integrate the adult-oriented care they will receive with their previous care in the pediatric setting, but it also challenges both pediatric and adult health care providers to negotiate differences in philosophy, assumptions, and approach in order to facilitate the transition experience for their mutual patient. This paper will explore the cultures of pediatric and adult health care, highlighting their similarities and differences. It will identify characteristics and values that could encourage or inhibit the smooth transition from child-centered to adult-centered care. Finally, it will suggest strategies to overcome differ-

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ences to help make for a seamless transition for the young person with a chronic illness or disability.

Cultures of Care Care delivered to chronically ill children, mostly by pediatricians and pediatric specialists, differs in many ways from the care delivered to chronically ill adults, mostly by internists and internal medicine specialists. (The socialization, culture, and consequent practice style of family medicine will not be discussed in this paper.) Beyond the obvious fact that the patient populations differ in age, pediatricians and internists have emerged from different career paths and bring with them distinctive approaches to the care of their patients. Because medical school graduates in the United States choose from among many diverse professional directions, pediatricians and internists are the product of self-selection. Their decision is an amalgam of individual attributes, past experiences, role modeling, personal style, preferences, goals, and expectations. Thereafter, training in either discipline socializes young pediatricians and internists to the unique comportment of their chosen field. Practice patterns, the working environment, collegiality, and mentorship all become self-reinforcing. Physicians in all specialties develop unique styles of care. Stereotypes support the existence of these archetypes--for example, pediatricians are thought of as warm and playful whereas internists are seen as thoughtful and scientific. As the practice styles of pediatric medicine and adult medicine are compared below, it is worthwhile noting that there is no one "best" style. For adolescent and young adults with chronic conditions, some aspects of typical pediatric care and some aspects of the care typically found in adult medicine will seem more appropriate, for more patients, more of the time. It should also be emphasized that the descriptions below are nothing more than gross generalizations and therefore should be regarded cautiously.

Internal Medicine Is a "Cognitive" Specialty Many choose a career in internal medicine precisely because they are stimulated by challenging diagnostic and therapeutic problems. The approach, while patient-centered, is one of intellectual rigor. The prototype internist is cerebral, exhaustive, and a master of differential diagnosis. The internist practices evidence-based medicine based on encyclopedic familiarity with the medical literature. At times,

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the "sport" of clinical problem-solving can seem to shift the focus from the needs of the whole patient to a more tunnel-visioned view of the presenting problem. Endless diagnostic tests, sometimes expensive or invasive, are done in the pursuit of diagnostic certainty" and to exclude rare or arcane diagnoses. When there are unanswered questions, there are unlimited consultants, subspecialists, referrals, and investigations available for every conceivable organ system or body part. Patients sometimes feel as though they have been carved up by their physicians into so many different pieces with nobody looking after the whole. Pediatrics like internal medicine is a predominantly cognitive specialty. A pediatric career, however, is frequently chosen more for the opportunity to work with children than for the cognitive skills it employs. Because the relationship between a pediatrician and his/her patient tends to be a more emotional one, diagnostic enthusiasm is more often restrained by concern for the effects on the young patient. There is less of a tendency for the needs of the patient to be subordinated to diagnostic curiosity or completeness. In short, it is less likely that the patient will get lost amid the symptoms. Adolescents and young adults with chronic conditions benefit from complete and dispassionate care. Thoroughness is invaluable, especially in more complex clinical situations, but must be weighed against the "need-to-know," and the implications for care, and other practical considerations. Because of longstanding and sometimes emotional attachments to patients, pediatricians may be reluctant to transfer their care (3). Providers in the adult setting may be viewed by their counterparts in pediatrics as cold, distant, and inattentive to global patient needs. Sometimes, these perceptions are unintentionally communicated to families, compounding their resistance to transition efforts. Internists, on accepting newly transferred patients, can be tempted to embark on extensive reassessments (justified as "establishing a baseline") or to make sweeping changes in management. These will only further exacerbate mistrust and further jeopardize the transition plan.

Pediatrics Has a Strong Developmental Focus Pediatricians are trained to observe, assess, chart, and facilitate growth and development over time. Throughout childhood, health supervision visits have growth and development as their centerpiece and pediatricians are expected to recognize and evaluate any perturbation of normal development.

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Pediatricians are accustomed to seeing their patients grow, mature, and become more capable. For most adult patients, growth and development are complete. Because there is little expectation of continued development, there is little attention paid to developmental assessment over time. Indeed, the expectation of internists, for most of their patients, is progressive decline rather than growth. Even in the absence of chronic conditions, senescence eventually supervenes with resulting gradual deterioration. For adolescents and young adults with chronic conditions, pediatricians are more likely than internists to monitor and evaluate developmental progress. Given that physical, emotional, social, and psychosexual development are often delayed in this patient population, the developmental awareness of pediatricians may be more suitable than the more pessimistic expectations of internists. On the other hand, internists may be more responsive to the divergence of some patients form adult norms and may be quicker to consider remediation than their watchful pediatric colleagues.

The Typical Adult Patient Has a Complex and Progressive Condition, Frequently with Involvement of Multiple Organ Systems These patients are extremely challenging to their physicians and other caregivers. The natural history is often initial stabilization followed by subsequent progression with advancing time or age. Not infrequently, adult illness is associated, exacerbated, or perpetuated by self-destructive behavior (e.g., tobacco, alcohol, and other drug use) or failure to adhere to prescribed therapy (e.g., the dietary prescription in insulin-dependent diabetes mellitus). There is often a sense of resignation in managing such patients; despite best efforts on the part of the physician, inexorable deterioration is expected. In pediatrics, the typical patient is healthy; much of pediatrics is care devoted to the health supervision of well children and the management of minor infectious diseases. In illness, single organ system involvement is the rule. Most patients get well. Only in a minority of cases are patients perceived as bearing some direct responsibility for their condition. Risky behavior and noncompliance, contributing significantly to ill health, are less common in children than adults. When found, they are easier to explain developmentally and to accept nonjudgmentally than when implicated in adults. Overall, pediatricians are more likely to have an optimistic view of the future for their patients.

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Pediatrics is Strongly Family-Centered Pediatricians view families as critical to the wellbeing of children and adolescents. Pediatricians are trained to think of children as existing within broader family structures and to evaluate these structures as part of their assessment. Beyond being responsible for providing adequate food, shelter, safety, and medical care for their children, families must also provide an emotionally secure environment in which children can grow. The legal system recognizes families as having these responsibilities as well as their complimentary right to make decisions on behalf of their children. Strong families can make children resilient to even profound physical and psychosocial failure to thrive--profound stunting in the absence of organic etiology. Adult patients are expected to function more autonomously. Families are seen as peripheral and their roles in health and disease are usually not fully explored. For the older adolescent and young adult with a chronic condition, family-centered care is ideal, but must be redefined. Individual needs must now dictate the degree of family involvement. The capacity for self-care, living arrangements, the ability to communicate, and other practical considerations will all help to determine the extent to which a family's involvement remains appropriate in ongoing health care. When families are included, their role must be carefully considered. Confidentiality and empowerment of the young person must be balanced against the day-to-day assistance families may be required to provide. Providers must be alert to tension that sometimes develops between the needs and preferences of the patient, and those of the family. Competence, guardianship, and other legal issues may be problematic in some settings.

Internists Communicate Directly with Their Patients The typical encounter between internist and patient is a private one. Internists are accustomed to speaking directly with their patients, eliciting and sharing information, and making decisions together. Family members and significant others, when present, are supporting players. In most pediatric encounters, however, the situation is quite different. Pediatricians communicate with younger children through their parents. Parental observations supplant (necessarily at times) the child's own reported symptoms and experiences. Decisions are made by pediatrician and parents on the child's behalf. The child patient,

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while the central focus of the visit, is often left oddly out of the communication loop. What may have been a functional communication style in earlier childhood, becomes progressively less appropriate in adolescence. Adolescents value privacy and expect confidentiality in their relationship with health care providers. In general, teens should have the opportunity to communicate privately with their health care providers to increase the likelihood that sensitive issues will be openly discussed. For this reason, the doctor-parent-patient relationship is typically reconfigured to increase the direct communication between the physician and the adolescent patient. Over time, parents become less involved in the care of their teenager and eventually withdraw completely, once their older adolescent or young adult child is prepared to accept the responsibility as their own. Sadly, the same does not always occur for adolescents with chronic conditions. Parents maintain a vital interest in the care of their adolescent and usually remain intimately involved in their child's health care. Consequently, and with the physician's tacit approval, parents also continue to be active participants in each of their adolescent's health care visits. In this atmosphere, the gradual shifting of communication focus frequently does not occur and parents continue to speak for their adolescent or young adult despite being less able to credibly do so. Adolescents may begin the feel "left out" of the care of their own illness--a feeling that undermines emerging autonomy, self-care, and a sense of personal responsibility. Persistence of this pattern limits the adolescent's willingness to share information, increases the potential for miscommunication, and contributes nothing to the rapport or therapeutic alliance between physician and patient. Sensitive issues may never be addressed and hidden agendas may not be aired.

Internists Empower Patients with Information and Expectations In the care of adults, providers and patients are presumed to share equal responsibility for successful care. Internists educate patients about their condition, and as part of a coequal practice style, rely on knowledgeable patients to make informed decisions and to be active partners in care. Patients are expected to be alert to changes in symptoms and to contribute information at each visit. They make management decisions jointly with the provider, and are expected to adhere to mutually agreed-upon treat-

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ment plans. Adult providers are less likely to legitimize noncompliance, less likely to indulge immaturity, and are therefore less tolerant of noncompliant behavior'. The relationship between pediatrician and patient is often parental. Patients are often assumed to be fragile, vulnerable, or to have limited skills. In their care of patients, pediatricians frequently support and nurture patients rather than challenge them. They are more likely to be prescriptive than collaborative and less likely to involve the young person in determining management plans. Shared decision-making is more likely to involve parents than patient. Similarly, educational efforts are more likely to be directed to parents than to the patient. Almost always, insufficient attention is paid to the ongoing education of patients whose cognitive skills and capacity for unde.rstanding increase over time. Excess dependency may be inadvertently encouraged and can become self-fulfilling when providers are skeptical of adolescent self-care and whose approach to increasing adolescent responsibility is rhetorical rather than expectant. Adolescent responsibility is undermined when parents are asked to supervise care at home. At times, pediatricians may be apologists for adolescents' nonparticipation. Or, noncompliance may be too quickly excused on the basis of age or immaturity.

Care in the Pediatric Setting is Often Interdisciplinary More and more, care for chronically ill children and adolescents is delivered by interdisciplinary teams. These teams, whose members come from diverse professional backgrounds, offer comprehensive, coordinated, and cost-effective care in a one-stop, patient-friendly environment. Patients and their families are spared repeated visits, and quality of care is enhanced by immediate, continuous, and solutionoriented communication among the involved health care professionals. Truly interdisciplinary care is the exception in the adult health care setting with multidisciplinary care being more common. In multidisciplinary care, many professionals are involved, each taking responsibility for a portion of the total care delivered. Communication among the professionals occur ad hoc as the situation demands, but it is rare in this format for the entire group to meet together regularly or to function as a true team. Patients must also make more visits, communication among providers is more circuitous, and care-coordination is less effective.

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Between Two Cultures Many attributes of the pediatric environment are uniquely suited to the care of children and younger adolescent with chronic conditions. In particular, the clear role for parents and families, the supportive practice style, and the awareness of developmental issues, are all applicable and especially fitting to the care of a younger population. However, for the older adolescent or young adult, these same attributes gradually become dysfunctional and limiting. To allow for increasing personal responsibility and selfreliance, the role of parents and families must be redefined. Adolescents must become self-efficacious and motivated to become equal partners in their own care. Expectations of self-care are essential and selfreliance strongly encouraged. Young adults, even those with conditions of childhood onset, are usually best cared for in the adult health care environment. However, it is naive to assume that providers of adult health care are adept at delivering the ongoing care of young adults with chronic conditions and there is much to be learned from the pediatric experience. A positive and optimistic long-term view for patients is essential, one characterized by expectations of growth, maturation, and increased potential. Also, the interdisciplinary teams prevalent within pediatrics should be a model for the care of complex conditions in all settings. For adolescents and young adults with chronic conditions, a progressively coequal approach should characterize the interaction between health care providers and their maturing patients. Eventually, transition to adult health care settings should occur for nearly all of these young people. No single best approach can be offered. The nature of the transition process must be individualized to meet the specific needs of each adolescent, his or her family, the old and new providers, and the system in which they find themselves. The hedging is unavoidable; for this extremely heterogeneous population, there can be no "one-size-fits-all" solution or universal transition prescription. Transition efforts will be most successful when the adolescent and family have been well prepared for the impending transfer of care. There is no arbitrary age or single developmental milestone that heralds transition readiness. Neither is there a simple tool to assess that adolescents are prepared to function in the more demanding adult setting. Young people will be best prepared for the adult health care environment if they are able to communicate independently with health care providers and can advo-

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cate forcefully on their o w n behalf. They should have already assumed substantial responsibility for their o w n m a n a g e m e n t and have demonstrated themselves as effective in their o w n self-care. The actual transfer of care should be timed to coincide with generally increasing a u t o n o m y but health care transition does not occur at a point in time; it is a process that occurs over time and concurrently with other important transitions (school to work, i n d e p e n d e n t living, etc.). Potential problems in transition m a y be related to uncertainties about the new provider or milieu, changes in practice style, or from conflicts arising over specific changes in the therapeutic regimen. Preparations for transfer should include an introduction, preferably by the current pediatric provider, to the n e w physician(s) and care coordinator. Differences in the practice philosophies and style between the current pediatric setting and p r o p o s e d adult setting should be discussed fully. A careful transition plan, created together by patient, family, and existing and new providers, can safeguard against unexpected or abrupt changes in management. Patients should anticipate that the delivery of care, in both style and content, will change as they m o v e from one e n v i r o n m e n t to the other. Families must also be p r e p a r e d to renegotiate their role in the new care environment.

Strategies for Success Transition to adult health care for adolescents and adults with chronic conditions can be an e m p o w e r ing experience and can p r o v i d e a more appropriate medical h o m e in which to receive health care. Contemplating transition, however, forces y o u n g people, families, and providers alike to examine their personal or professional strengths, u n e x p l o r e d biases, and ultimate goals. Transition will be most successful w h e n it is well timed and is preceded by adequate g r o u n d w o r k . For the y o u n g person entering the new adult setting, the language, protocols, and conventions m a y seem uncomfortable and foreign, as they might in any new culture. Extra effort m a y be required early on to o v e r c o m e this initial uneasiness, to establish rapport with the n e w providers, and to develop trust in the new team. Acculturation to the n e w e n v i r o n m e n t m a y not occur immediately but is probably not w o r r i s o m e so long as the patient is fmlctional and making progress towards increasing self-reliance. The pace and progress of the transition process should be carefully monitored to allow

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timely troubleshooting of logistic problems and early detection of serious difficulties. Transition can be interrupted for the occasional patient w h o m a y have entered the process before they were ready. Patients should be discouraged from straddling the pediatric and adult systems to avoid mixed messages, splitting, or confusion over m a n a g e m e n t plans. Careful surveillance is also required to ensure that patients are not lost completely. Some adolescents and y o u n g adults have found the transition process an o p p o r t u n e time to quietly d r o p out of care altogether. Such "lost souls" can be best avoided t h r o u g h adequate support, frequent communication between providers, and w h e n it is clear which provider is ultimately responsible for follow-up. Bridging the cultures of pediatrics and adult medicine is a challenge for adolescents and y o u n g adults with chronic conditions, their families, and the providers who serve them. Pediatricians must help their older patients to reach u p to more i n d e p e n d e n t and self-effective lifestyles, and in doing so, thev must themselves develop more appropriate ways of interacting with nearly-adult and adult patients. Providers of adult health care must w o r k with relatively inexperienced adolescent and y o u n g adult patients to b e c o m e more effective health care consumers and energetic self-advocates. Pediatricians and internists must w o r k together to develop coordinated and workable transition plans, and to educate each other about their respective specialties and the settings in which they practice. Adolescents and y o u n g adults must do the hardest w o r k in traversing two very different systems of care in pursuit of greater selfreliance. Treated as adults, and as full participants in their o w n care, they are less likely to remain in d e p e n d e n t relationships, and more likely to reach their full adult potential.

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7. Court JM. Outpatient-based transition services for youth. Pediatrician 1991;18:150-56. 8. Moving on...Transition from child-centered to adult health care for youth with disabilities. US Department of Health and H u m a n Services, Public Health Service, Health Resources and Services Administration, Maternal and Child Health Bureau. Washington DC, 1992:1-20. 9. Cystic Fibrosis Center Committee and Guidelines Subcommittee: Cystic Fibrosis Foundation guidelines for patient services, evaluation, and monitoring in cystic fibrosis centers. Am J Disease Child 1990;144:1311-12. 10. American Academy of Pediatrics, Council on Child and Adolescent Health: Age limits of pediatrics. Pediatrics 1988;81: 736. 11. American Academy of Pediatrics, Committee on Children with Disabilities and Committee on Psychosocial Aspects of

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Child and Family Health: Psychosocial risks of chronic health conditions in childhood and adolescence. Pediatrics 1993;92: 876 -78. 12. American Academy of Pediatrics, Committee on Children with Disabilities: Provision of related services for children with chronic disabilities. Pediatrics 1993;92:879-81. 13. American College of Physicians, Health and Public Policy Committee: Health care needs of the adolescent. Ann Int Med 1989;110:930 -35. 14. Society for Adolescent Medicine. Position paper: Transition from child-centered to adult health care systems for adolescents with chronic conditions. J Adolesc Health 1993;14:57076.