Positive Approaches Journal, Volume 13, Issue 4

Volume 13 ► Issue 4 ► March 2025

The Fatal Five and the Importance of Monitoring

Jenifer Baker RN, CDDN, CDP

The "Fatal Five" refers to the five primary conditions that significantly elevate the risk of mortality in individuals with intellectual and developmental disabilities (IDD). These conditions include aspiration, seizures, constipation, dehydration, and infection/sepsis. Notably, many of these conditions are often preventable. However, they may frequently go unrecognized, be misdiagnosed, or be mistaken for behavioral expressions. By promoting education and increasing awareness within family members, support persons, and the individuals themselves, regarding the significance of monitoring, documenting, and reporting these conditions to health care professionals, it is possible to help to reduce the risk of fatalities associated with these conditions.

Aspiration refers to the process in which foreign objects such as food, liquids, medications, or even a person’s own secretions, are inhaled into the lungs. It can lead to respiratory infections that can be serious and life-threatening such as pneumonia. There can be obvious signs that someone has aspirated, but there can also be subtle signs. It can be especially difficult if the person is unable to communicate that they have had difficulty swallowing or have had choking episodes. Signs that may indicate a person has aspirated can include:

Individuals with IDD may experience an elevated risk of aspiration due to conditions such as seizure disorders, cerebral palsy, and dysphagia. Additionally, certain medications can further increase this risk by impairing alertness. Particularly, anticholinergics such as diphenhydramine (Benadryl), commonly used to relieve allergy symptoms; oxybutynin (Ditropan) and tolterodine (Detrol), both used to treat symptoms of overactive bladder; and benztropine (Cogentin), prescribed to treat Parkinson’s disease and medication-induced movement disorders. Certain psychotropics and muscle relaxants can also contribute to decreased awareness. Should the individual have a meal plan in place which modifies the consistency of foods and liquids, it is imperative that this plan is strictly followed. Vigilant monitoring for signs of aspiration, along with ensuring appropriate seating and positioning during meals is essential. Should any indicators of aspiration or respiratory infections arise, it is crucial to consult a medical provider for prompt evaluation.

Seizures are abnormal electrical responses in the brain which may result in involuntary physical and behavioral changes. There are several different types of seizures. Some may be obvious, such as with a tonic-clonic (formerly known as grand mal) seizure, or the seizure may be so subtle that it goes unnoticed, such as with an absence seizure (staring seizures), certain focal seizures (complex partial seizures), and even atonic seizures (drop seizures). The understanding that seizures will vary and look different for each person is important when monitoring for signs.

Below are signs that might be seen when a person has a seizure.

For some individuals, these signs may be mistaken for unprovoked behavioral outbursts. This can lead to misdiagnosis. When the seizure does occur, note the time the active seizure started and stopped and what was observed before, during, and after. It is also helpful to ask the person if they can provide any insight into what they have experienced or felt before, during, or after the seizure. Documenting known seizure triggers can also be insightful when supporting and monitoring someone who has seizures. Always clear the area for the person who is having the seizure, keep them safe, and never place anything in their mouth. Call 911 if it is their first seizure ever, it lasts longer than five minutes, they are having back-to-back seizures with no return to baseline, they have trouble breathing, do not regain consciousness after the seizure, or if they have sustained an injury that requires more than basic first aid.

Constipation occurs when a person has infrequent, difficult, or painful bowel movements. This can become life threatening as it can lead to bowel obstruction. For people with IDD, constipation is a common condition. Keeping a bowel chart can help with monitoring bowel habits and it may also be useful to implement a toileting schedule to help the person follow a bowel routine. Signs of constipation could include:

There are conditions that can also increase the risk of constipation, including neurological disorders, metabolic or endocrine disorders, gastrointestinal conditions, and aging. Reviewing a person’s diagnoses and history can be helpful. Several medications can have side effects of constipation. These are some of the more common ones:

Therefore, reviewing current medications to determine if they are a factor can give insight into potential causes. If there are concerns regarding medications that a person is taking, check the medication guides that come with the medications or speak with the pharmacist. For someone experiencing constipation it is important to monitor dietary fiber and fluid intake. If a person is not taking in enough fiber and liquid, this can contribute to constipation. Incorporating regular physical activity can also help with constipation. This can also be challenging if a person has mobility issues. If a person is experiencing frequent episodes of constipation speak to their medical provider for guidance on the best way to manage it.

Dehydration is a loss of more fluids than a person is taking in. For people with IDD there can be several barriers and challenges to ensuring they have adequate fluid intake. Some individuals with IDD are at greater risk for dehydration and it can happen quickly. It can happen even more so in hot weather, during illness, or if someone is physically exerting themselves. Signs that may be noted in someone experiencing dehydration can include:

Monitoring the color of someone’s urine is a good indicator of hydration. The darker and more concentrated the urine the less hydrated a person is. Also, monitoring fluid intake can give a better insight into how much fluid a person is taking in. Encouraging fluids frequently throughout the day, as well as foods that have higher water content, such as watermelon, strawberries, lettuce, cucumbers, popsicles, and flavored gelatin can aid in preventing dehydration. Water is always the best option. Avoid caffeinated and alcoholic beverages, like soda pop, which can contribute to dehydration.

Infection occurs when a pathogen, such as bacteria, viruses, parasites, or fungi, invade the body and multiply. Monitoring for signs of infection will depend upon what type of infection it is and the ability of the body to fight off the pathogen. A person may experience fever, chills, vomiting, diarrhea, coughing, redness, swelling, warmth, pus, or oozing from the affected area. For people with IDD there may be other signs that may be more difficult to correlate with an infection, such as behavioral changes including aggression, withdrawal, changes in mental status-confusion, delirium, or disorientation. They may be lethargic or unwilling to participate in desired activities or daily routines. If there is any type of pain, the person may be bracing, guarding, or rubbing the area of discomfort. For someone with dental pain they may refuse to eat. Sometimes the person just does not seem like themselves. It may be difficult to recognize that there is an infection occurring if there are not obvious outward signs. That is why monitoring, documenting, and making the medical provider aware of what is observed is essential, so that treatment of the infection is not delayed, and that it does not evolve into sepsis.

Sepsis is the body’s severe reaction to an infection, causing a cascade of events throughout the body. If not treated promptly, it can rapidly result in tissue damage, organ failure, and death. There are conditions that put people at risk for sepsis. It is more prominent in people over sixty-five, children under the age of one, people who have weakened immune systems, sepsis survivors, someone with a diagnosis of chronic health conditions, and medically fragile people with IDD.

Signs that may occur with sepsis can include:

Monitoring and reporting the signs of sepsis, as well as any of the other signs of infection will be important to promptly communicate to the medical provider. The provider should also be made aware of any prior known history of sepsis. This condition is severe and life threatening, requiring immediate evaluation and treatment.

It may not always be obvious that someone with IDD is experiencing one or more of the fatal five conditions. It is essential that those who are supporting the person, as well as the person themselves are educated and aware of what common signs and symptoms associated with the “Fatal Five" conditions—aspiration, dehydration, seizures, constipation, and infection/sepsis may look like. Monitoring, documenting, and communicating with all involved in care can help to ensure overall well-being for people with intellectual and developmental disabilities, reducing the risks associated with these fatal five conditions.