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Caring for inpatients with chronic diseases from childhood
By Charlotte Huff
Family conflicts are part of growing up, but this standoff between parent and adult child involved a worrisome twist: the 22-year-old California woman badly needed treatment for her cystic fibrosis.
Her parents had called one September weekend, fretting about their daughter's worsening symptoms, including increased shortness of breath, weight loss and fatigue, said Kevin Shaw, MD, an assistant clinical professor of medicine at the University of California, San Diego. “She clearly needed to be in the hospital,” said Dr. Shaw, who fielded the call and treats patients at UCSD's adult cystic fibrosis clinic.
Illustration by David Cutler.
He located a hospital bed for the young woman, but she initially refused to come in. “I spent a long time talking to her mom and her dad saying, ‘Technically she is an adult and I can't make her do anything,’” Dr. Shaw said.
The crisis was resolved three days later, when the young woman relented, and her parents drove her to the hospital. Dr. Shaw, who planned to sit down with the woman and her parents to discuss averting such future standoffs, said the situation illustrates the treatment challenges that can flare when teens and young adults move from the cocoon of pediatric care into the world of adult responsibility.
Thanks to ongoing medical advances, more children diagnosed with cystic fibrosis, congenital heart disease, Down syndrome and other physical or developmental conditions survive well into adulthood. The entry of these chronically ill patients to the adult setting, though, can stress patients and physicians alike, according to a survey of internists published in the Feb. 1, 2009 Pediatrics. Along with citing their lack of training in congenital and childhood conditions, the internists also said they worried about meeting the patient and family's psychosocial and other needs.
Ideally, a pediatrician will have worked with such patients, starting in their early teens, to help them assume more responsibility for their own health care—from understanding their medications to their insurance coverage, said Keely Dwyer-Matzky, MD, ACP Member, an assistant professor of pediatrics and medicine at the University of Rochester Medical Center in Rochester, N.Y. “Transition during a crisis is never good,” she said.
But hospitalists can help ease the way, said Dr. Dwyer-Matzky. By taking some extra time to communicate and gather relevant medical records, a hospitalist can make the patient's first experience with the adult hospital world a more comfortable one, she said.
Once patients with chronic illness reach their 18th birthday, many will be getting care at an adult hospital, including 67.2% of those with cystic fibrosis, according to a study published in the October 2006 Archives of Pediatrics & Adolescent Medicine. Admission patterns were similar among the other three diagnoses studied, with 71.2% of spina bifida patients, 73.1% of those with sickle cell disease and 74.8% of those with congenital heart disease all getting care at an adult hospital.
Among some patients, such as those with cystic fibrosis, the likelihood of hospitalization increases over time, as exacerbations are more prone to develop and become more severe, Dr. Shaw said. For sickle cell patients, the rate of hospitalization or emergency department care is highest among young adults, ages 18 to 30, according to a study published in the April 7, 2010 Journal of the American Medical Association. The rate may peak then in part because the sickest patients don't survive to middle age, according to researchers involved with the study.
To best help these fledgling adults, doctors will not only need to reacquaint themselves with the chronic disease involved, but also consider related risk factors or conditions not typical in someone so young, said Susan Hunt, MD, ACP Member, who works both as a hospitalist with adults at University of Washington Medical Center and as a pediatrician at Seattle Children's Hospital.
For example, a doctor might not contemplate the possibility of a heart attack in a young adult with juvenile diabetes if they lose sight of the disease's impact on the heart and kidneys, said Dr. Hunt. They also might not be accustomed to initiating end-of-life discussions with a patient on the cusp of college graduation or a first job, she said.
An additional challenge is that young adults can exhibit dramatically different maturity levels and interest in their own medical care, Dr. Shaw said. Throw in a normal dose of adolescent rebellion, and proper medical care is vexing for both physicians and families, he said. “God bless our parents—they struggle with this,” he said. “Do you let [the patient] ‘learn his lesson,’ so to speak? Do you sort of smother him or something in between?”
For patients, an adult hospital can seem like a strange, antiseptic world after the colorful murals and fish tanks of their children's hospital, said Dr. Dwyer-Matzky, who cares for both hospitalized children and adults at University of Rochester Medical Center. An adult hospital might place stricter limits on visiting hours, she said.
The parents also might be jarred to learn that the doctor discussed the treatment plan with the patient, even when they weren't nearby. “It's hard…for adult hospitalists to recognize that this is a very different patient experience,” she said.
If this hospitalization is the patient's first experience with an adult setting, take the time to set expectations early on, Dr. Dwyer-Matzky recommended.
Emphasize that the doctor will primarily talk to the young adult and in what circumstances and how frequently they will double back to update parents. Otherwise, she said, “A parent may be very surprised that they are not getting a call every day.”
When first meeting the patient, get a quick gauge on how much he or she understands about the diagnosis and related medical care, Dr. Shaw said. Ask about insurance coverage as well as what medications the patient takes and why. “As crazy as it sounds, they might not know what they take,” he said.
Along with requesting the relevant medical records, and talking to the patient's prior pediatric physician, the hospitalist could also benefit from compiling other psychosocial and supplementary information, Dr. Hunt said.
Dr. Hunt, who practices at a Seattle Children's clinic for complex illnesses, described the care plan that clinicians there develop, including family contacts, the school nurse's name, home health agencies used, and any technical details, such as the make and model of medical devices used by the child. “If something breaks, it's helpful to know who to call to fix it,” she said.
One section of the plan, devoted to emergency care, highlights not only allergies, but also the reasons why the child typically needs urgent treatment, Dr. Hunt said. If a patient has frequent seizures, that section might describe the appearance of the seizures, as well as the circumstances under which the patient has been hospitalized in the past, she said.
Other helpful details: a patient's pain tolerance and how pain is expressed, if the patient can't communicate verbally. A care plan can also include comfort measures. Dr. Hunt described one patient who handles the emergency department's stimulating environment better when wrapped in warm blankets.
To fill in such gaps, a hospitalist could locate a social worker or care coordinator who worked with the family in the pediatric setting, Dr. Dwyer-Matzky said. And he or she should always stay savvy to familial dynamics, as parents can struggle with letting go, she said. Don't wait until the fourth day of a hospital admission to call the parents, particularly if it's their first experience with an adult facility.
“It may take a little more effort on the adult hospitalist's part, but it will help ease the transition a little bit,” she said. “I think that overall the quality of care and the success of the transition to the adult hospital world will be better in the long run for the patient.”
Charlotte Huff is a freelance writer in Fort Worth, Texas.
Prepping for transition
A teen or young adult's first admission to an adult hospital should go more smoothly if the patient's pediatric physicians help transition the chronically ill patient and his or her family, ideally starting years in advance.
There are guidelines and some templates on making the transition available from these sources:
- American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians, Transitions Clinical Report Authoring Group. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011;128(1):182-200.
- Carolina Health and Transition Project (CHAT).
- University of Washington Adolescent Health Transition Project.
- Wisconsin Community of Practice on Transition.
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