You may have heard the term “medically complex” when describing a person with multiple health issues. But what does it mean?
When doctors use the term “medically complex” to describe a person, it means they have been diagnosed with three or more diseases or substantial on-going health conditions that affect multiple systems in their body. People with medical complexities require the highest level of medical care and support possible, which is more than most hospitals can typically provide.
People diagnosed with medically complex issues face a whole host of health challenges that most people don’t have to face. In addition, their families face enormous challenges in caring for their loved one. Below is a guide where we discuss what the term medically complex means.
What Does the Term Medically Complex Mean?
People who have been diagnosed with medically complex conditions have chronic illnesses or diseases that affect multiple systems in their body. These conditions can either be genetic or brought on by environmental conditions.
Medically complex patients require a team of health professionals to create an optimal health care plan to help support their quality of life at the highest level possible.
Most general health care providers and hospitals aren’t equipped to handle the level of need that medically complex patients present. So families with medically complex children seek out specialists who can help them manage these conditions.
Often the parents are the best experts for their children’s diagnosis and can educate the specialists on the care needed.
A person with medically complexity may have a combination of
- Developmental disabilities and delays
- Congenital disorders
- Severe neurological conditions
- Functional Impairment disorders
- Behavioral issues
- Emotional impairment disorders
How Doctors Diagnose Medically Complex Patients
The road to a medically complex diagnosis isn’t easy or straight. Often a person has to receive multiple tests and treatments to figure out what the conditions are and how to treat them.
| Health Status | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 |
| Health Description | Healthy/no significant issues | Significant acute condition | One minor chronic condition | Multiple minor chronic issues | One dominant or moderate chronic Issue | Two dominant or moderate chronic Issues | Three or more dominant or moderate chronic health issues | Malignancy under active treatment | Catastrophic |
| Example | Baby delivered with no complications | Baby delivered with complications | Migraines | Migraines, plus high cholesterol | Diabetes | Diabetes plus high blood pressure | Diabetes, high blood pressure, and congestive heart failure | Bone cancer | Multiple heart attacks. |
Depending upon the conditions and diagnosis, a person with medical complexity are usually placed in health status 5 through 9, out of 9 categories, in a common classification system:
These are people, mostly children, who have:
- Complex and ongoing conditions
- Malignant and life-threatening issues, such as cancer.
- Lifelong chronic conditions
But what defines medical complexity can be subjective, depending on the doctor diagnosing the issues. And it isn’t just the health challenges the person faces, but a whole list of other factors, such as:
- Medical conditions
- Behavioral conditions
- Health issues that cause stress in the family
- Social context
Caring for A Person Who is Medically Complex
It’s one thing to gather data from administrative records and medical tests to define a person’s condition and try to create a support plan. But there is so much more that goes into the care of a person who is medically complex besides treatments and hospitalization.
The first step in caring for a medically complex patient is to determine a course of action that will best lead to complete healing or aid them in having a high quality of life.
Teams of specialists work together to create this plan that takes into consideration the quality of life for the person and family members. This may include assistive and adaptive equipment.
They consider the person’s level of functional limitation and what assistance they need to get around. Defining what is a functional limitation depends on how much a person’s ability to function overall is affected by a particular body system or part.
People who are medically complex may heavily rely on medical technology or support systems to adequately function in day-to-day activities.
For example, someone with Spina Bifida may use a wheelchair and need help using the bathroom or doing basic hygiene.
These individuals may need a team of experts who specialize in such areas as
- Neurological disorders
- Behavioral Therapists
- Speech Therapists
- Genetic disorders
- Rare or life-threatening illnesses
- Cardio-pulmonary diseases
In addition to having a team of specialists to support their health and well-being, people with medically complex conditions also heavily rely on their family and friends for support. This means that family and friends may provide care for their day-to-day needs.
A medically complex person may need nurses and caregivers on a regular basis as well. These services could range from
- Meal preparation
- Hygiene assistance
- Emotional support
- Housekeeping
Because of the ongoing complexity of their conditions, these individuals and their families experience financial challenges.
Most often, families with children with medical complexities are enrolled in Medicaid. In 2011, only 5.8 percent of all children covered by Medicaid were considered medically complex, yet they accounted for thirty-four percent of the health care spending. And about half of that was due to hospitalizations.
Medicaid providers recognize the enormous stresses that the family of children with medical complexities face, and are working to help put systems in place to help them.
Some of these stresses include
- Improving communication between providers
- Reducing the need for unnecessary travel between appointments
- Effective and timely medical care for their family member
- Coordinating direct home care that includes respite
- Navigating the maze of insurance forms and health care services
- Assistance with financial aid
- Support from multiple therapists
- Having to make difficult decisions with minimal information.
- Balancing home and work life, with other family members
Caring for a child with medically complex challenges is no small feat. Consequently, families tend to develop support systems. They network closely with other families who have medically complex children and share experiences.
The Difference Between Medically Complex and Medically Fragile
The term “medically complex” has often been used interchangeably with the term “medically fragile.” But there is a difference between them.
While a person with medically complex challenges has three or more debilitating illnesses or chronic health conditions, a person who is medically fragile requires around the clock care. They depend on caregivers for every need, including
- Hygiene
- Nutrition
- Medical technology for basic life functions, such as an oxygen machine.
People who are medically fragile often need high levels of care just to stay alive. They can have multiple system issues that don’t just affect their physical health, but their mental capacity and ability to communicate.
Whole teams of people work together to help them not only just survive, but to have the best quality of life possible.
For those medically fragile individuals who are thriving, their families will be their biggest advocates and voices. The experts who educate the experts. And the voice of support to other families facing similar challenges.
For example, a family who has a child that’s medically fragile and received the diagnosis for a rare condition may share some of their experiences with other families. This could include:
- The research they did in order to understand the diagnosis
- How to navigate the emotional and mental toll it takes
- How it affected their other children and family members
- What “compatible with life” means.
Defining What Medically Complex Means
Defining the term medically complex is complicated because it isn’t just about the medical diagnosis. What defines a person as medically complex includes the impact they have on their family and their support community.