Safely Crossing the Health Care Transition Bridge
By: Dr. Carl Cooley, Special to The New Hampshire Challenge
Sabrina Judge will celebrate her 18th birthday in a few months, her survival to this milestone made more remarkable by the facts of her extremely premature birth and resulting complex health care needs. Sabrina’s cerebral palsy necessitates her use of a powered wheelchair and an electronic communication device. She experiences problems with hearing and vision and has seizures that are sometimes difficult to control. Scoliosis and hip dislocations have required surgical procedures on several occasions, and problems with chewing and swallowing necessitate that she receive some of her nutrition through a feeding tube implanted in her stomach. In addition to her primary care pediatrician who helps coordinate much of her health care, Sabrina sees seven different pediatric specialists at the children’s hospital in her area. All of these doctors have known Sabrina since her infancy.
One of the birthday surprises for which Sabrina and her family are wholly unprepared will be the news from her pediatrician that he does not take care of patients over age 18. That news will be followed by messages from several of her pediatric specialists that they, too, do not take care of adult patients. Furthermore, the children’s hospital itself has a policy requiring that patients over the age of 21 be admitted to the adult hospital across the street and use its emergency room. Because Sabrina’s mother has taken total responsibility for managing her myriad medical appointments, laboratory tests, and medication prescriptions, Sabrina herself has never filled a prescription or made an appointment with a doctor. As a matter of fact, she isn’t completely sure of the names of the medications she takes or even the names of the conditions for which she takes them. Her knowledge of her past medical history is sketchy though she does know that she is allergic to penicillin, or is it sulfa?
Sabrina is headed for a chasm known as Health Care Transition, and she and her family don’t know yet that there may not be a reliable bridge to the other side. Each year Sabrina is joined by 500,000 other new young adults with special health care needs who turn 18, and few of them are prepared to begin receiving their health care in the adult health care system and few of their health care providers are prepared to help them with this process.
Fortunately, over the past decade, family advocacy groups, public health policy makers, and some pediatric and adult health care professionals have begun to recognize the challenge of health care transition and to build better tools and systems to anticipate and deal with it. In June 2011, the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Medicine (internal medicine doctors) jointly published a set of recommendations for pediatric and adult physicians so that they can better support young adults through this transition. In July 2010, GotTransition was founded in Concord, NH, with federal funding to create a national health care transition research center. GotTransition now continues at new offices in Washington, DC, where it makes available a variety of tools and resources for families, health professionals, and policy makers. (www.gottransition.org). In addition, New Hampshire’s Bureau of Special Medical Services has been a leader among states in working to improve this health care transition for New Hampshire youth.
GotTransition provides health care professionals with a health care transition toolkit called the Six Core Elements of Health Care Transition so that they can incorporate better supports for a safe and seamless bridge across the health care transition chasm. The six core elements state that every health care setting should have a clear health care transition policy that is well known to patients, families, and staff. Health care settings taking care of adolescents should be tracking those who are approaching transition age to be sure they have the skills and resources that they will need in the adult health care world. Every youth should undergo a transition readiness assessment to identify needed skills and have a written health care transition plan, and these processes should begin no later than age 14 in order to be ready by age 18 or 21. For youth with intellectual disabilities, the transition plan should include an approach to shared decision-making that is aligned with the youth’s ability to make decisions independently. The eventual transfer of care to adult health care providers should be a warm handshake not just a hand-off, and the pediatric health care provider remains responsible for a youth’s care until involvement with adult providers is firmly established.
Ten Health Care Transition Action Steps for Families
1. Start early – at least by age 14 – to consider what needs to be in place by age 18
2. Ask your pediatric primary care and specialty care providers about their health care transition policies – until what age will they continue to care for youth
3. Obtain a youth health care transition readiness assessment from one of the resources below
4. Consider who might provide adult primary care – perhaps the same person or office that provides adult primary care to other family members. Document this plan with your pediatric primary care providers. Even if you receive pediatric care from someone who cares for both children and adults (family physician; med-peds physician; family nurse practitioner), all youth should begin experiencing an adult model of care and assuming responsibility for health care by age 18
5. Transitioning pediatric specialty care can be challenging – discuss this with pediatric specialists and begin making plans
6. Seek, expect, and accept as much independence for your young adult child as they can possibly manage, and consider appropriate shared decision making arrangements for those that will not be able to be completely independent
7. Incorporate health care transition plans into the transition section of individual education plans
8. Provide opportunities to practice health care navigation skills such as picking up prescriptions and calling doctors’ offices for appointments or test results
9. Remember that at age 18, all youth in New Hampshire become their own guardians with regard to health care and no one else is entitled to any of their personal health information unless specific arrangements have been made with health care providers or guardianship has been transferred to someone else (e.g. parent)
10. Consider the fact that ALL youth will need to transition their health care to adult health care providers including youth who do not have special health care needs
NH Bureau of Special Medical Services
New York State Healthy Transitions http://www.healthytransitionsny.org
W. Carl Cooley, MD
Senior Consultant, GotTransition – National Center for Health Care Transition Improvement
Clinical Professor of Pediatrics, Geisel School of Medicine at Dartmouth
Chief Medical Officer, Crotched Mountain Foundation