Medically Complex, Medically Fragile, Disabled, Intellectual Disability, Chronic Illness?
Multiple definitions for medically complex exist and caregivers often are not explicitly given this terminology to use despite being accurate and appropriate. Medically complex is a broad medical and legal term that encompasses many unique and challenging medical circumstances. It is commonly used with the term medically fragile, which is similar but slightly different. Many individuals and professionals use the terms interchangeably due to their overwhelming similarities.
Disclaimer: This list is not exhaustive. It is a compilation of definitions, selected based on succinctness while encapsulating consistent themes of numerous medical journals, legislation, and organizations.
Why does defining and using the term matter?
Some may not realize how important labeling an experience or unique condition is. Labeling your loved one's condition as being medically complex helps those individuals, families, and others they engage with by (click on the arrows beside each list item to read more):
Creating a framework of understanding with others (ex. caregivers with medical providers, between practitioners, family, friends, caregivers, and professionals)
Per the published scientific journal article, The complex patient: A concept clarification: 'recognizing that “concepts, once formulated and labeled, tend to shape and guide what we see, and they provide order to observations and experiences” (P371), producing shared understanding of situations and events (Meleis, 2007)'. 'Concept clarification is important because healthcare providers need to understand each other when they work with... complex patients. A clear, shared and conscious agreement on this concept can act as a needed bridge to assist clear communication in multidisciplinary care. For that reason, Peek et al. (2009) argue that clarifying this concept serves a very practical need and Mount et al. (2015) suggest that “accurately defining complexity is essential to create interventions to improve patient care” (P138)'.
Providing a feeling of community and belonging while minimizing isolation and distress
Aiding caregivers in identifying appropriate assistance and support
Creating opportunities for improved interventions, research, and advancement in patient care
Providing context for legal protections
Medically Complex Definitions:
At a high level, medically complex means a child or individual has two or more concurrent chronic conditions that limit activities of daily living and require ongoing medical attention.
Per a report from the American Academy of Pediatrics, "an example of a child with medical complexity is one with a genetic syndrome with an associated congenital heart defect, difficulty with swallowing, cerebral palsy, and a urologic condition. This child would typically require the care of a primary care physician; multiple pediatric medical subspecialists or pediatric surgical specialists, home nurses, and rehabilitative and habilitative therapists; community-based services; extensive pharmaceutical therapies; special attention to his or her nutritional needs and growth; and durable medical equipment to maintain health, maximize development, and promote function."
# | Medically Complex Definition | Source |
|---|---|---|
1 | A term used when a child has two or more concurrent chronic conditions that require ongoing medical attention or limit activities of daily living. Medical conditions may vary from rare illnesses to premature birth and even physical trauma. Medically complex children often require lengthy hospital stays, and likelihood of recurrent hospitalization remains high even after discharge. When not hospitalized, individuals still require extensive home care and can be reliant on caregivers and technological devices to perform some of the simplest activities of daily living. | Mildly abridged from source for succinctness |
2 | a person has chronic debilitating diseases or conditions of one or more physiological or organ systems that generally make the person dependent upon 24-hour-per-day medical, nursing, or health supervision or intervention | |
3 | a student who has a serious, ongoing illness or chronic condition for at least a year and requires prolonged or intermittent hospitalization and ongoing invasive medical treatments or medical devices to compensate for the loss of bodily functions | |
4 | individuals... who have a complex medical or behavioral health condition and a functional impairment or an intellectual or developmental disability | |
5 | Children with medical complexity (CMC), who may also be known as “complex chronic”1 or “medically complex,”2 have multiple significant chronic health problems that affect multiple organ systems and result in functional limitations, high health care need or utilization, and often the need for or use of medical technology | American Academy of Pediatrics Report Recognition and Management of Medical Complexity |
Examples of Medical Complexities
Medically complex individuals have two or more significant medical conditions, and some examples of potential medical diagnoses are outlined below:
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Medically Fragile Definition
All medically complex individuals are medically fragile. Individuals who are medically complex have more than one condition, whereas those who are solely medically fragile have only have one. Often, medically fragile people are also medically complex. Medically fragile and medically complex individuals have many things in common. They both require constant monitoring and assistance for physiological and basic activities. Note: the definitions provided are compilations of multiple medical, legal, and/or relevant non-profit sources.
A person is medically fragile if he or she has a chronic debilitating condition or conditions, and meets one or more of the following criteria:
A few common treatments and procedures that a medically fragile child may require are:
This high-level definition of medically complex is brought to you by the Medically Complex Caregiver.
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