Physical & Nutritional Supports (Part 1)
I’ve practiced medicine in the field of healthcare for people with intellectual and developmental disabilities for many years, and sadly, I had never heard of the term “Physical and Nutritional Supports.” Sure, we did some of these things in our clinical support of people with IDD, but we never had fully understood what I consider this “lost art.” It’s time to put an end to that way of thinking. In this newsletter, we’ll talk about Physical Supports, and in a later newsletter, we’ll delve into Nutritional Supports. Much of what you read in these articles was adapted from the writings of HRS founder Karen Green-McGowan, RN. I’m thankful for the opportunity to have learned this and so much more from her.
The Concept of Physical & Nutritional Supports
People with physical disabilities often have conditions like cerebral palsy, spasticity and contractures of their extremities. Often, they are prescribed physical therapy for range of motion. There’s nothing wrong with that, but let’s look at it this way. We’ll compare weight loss to physical therapy to illustrate the concept.
Physical therapy is often delivered in doses to a person who needs modification of life-style 24 hours a day.
Consider a person who is morbidly obese. Doses of therapy, such as a 300-calorie meal three times a week, will seldom impact the problem unless movement and intake are modified 24 hours a day. Many clinical services are delivered in doses, but most major issues, such as obesity or recovery from a stroke, require a major alteration in lifestyle
With that in mind, consider a person who has a physical disability. They go to see a physical therapist for three doses of physical therapy per week. They then return home and are placed in a chair for the rest of the day before being placed in bed. That physical therapy is wasted and will have little, if any, impact on the health of the person. Ninety minutes of stretching a week compared to the remaining 9,990 minutes in the week spent sitting or lying down with little active movement just won’t do it.
Physical therapy is often delivered in doses to a person who needs modification of life-style 24 hours a day. Babies born with hemiplegia, the most common form of cerebral palsy, want to use only their good side and leave the involved side dragging behind. When they are forced to use the involved side from the get-go, within a year or so, one can often not tell that the toddler had a disability at all.
This makes the case for 24-hour planning that utilizes many forms of supports to get the function of a healthy body. It is not only up to the therapist or clinician to manage the person’s health. It is up to each person who supports them to understand the forms of support this person requires and how they fit in. Techniques to support people 24/7 are relatively easy to learn and to implement by all staff including direct support professionals when guided properly by a physical and nutritional supports plan. Rather than focusing on doses of therapy, we should develop a therapeutic lifestyle. It just makes sense.
Aspiration is usually listed as the most common cause of death in institutional settings, including nursing homes and large group care settings for people with IDD. Aspiration pneumonia is a common discharge diagnosis following hospitalization. It occurs when bits of food or liquids make their way into the windpipe instead of into the esophagus where it should be. Aspiration can occur during the swallowing process, but also occurs when stomach contents come back up the esophagus as a result of vomiting or gastroesophageal reflux. It often begins subtly and damages increasing portions of the lungs. Feeding tubes, which carry their own increased risks, are often utilized in an attempt to bypass the swallowing process and reduce aspiration episodes, but are not always entirely effective. Other factors which may lead to aspiration are poor body positioning, particularly in individuals who cannot control their own movements well, and behavioral issues related to eating. One of the most common signs of aspiration is a cough noted during eating or drinking or shortly thereafter. When a cough is noted under these conditions an evaluation should be initiated to look for possible aspiration.
Constipation and Bowel Obstruction are almost always at the top of the list of causes of illness and preventable death in people with IDD. One of the most important root causes of bowel obstruction is the use of multiple drugs with constipating side effects. Add to this the fact that most of us have dietary habits that contribute to the problem, chief among them, diets that are low in fiber and adequate fluids. Lack of mobility is a contributing factor to constipation, as well. We often see people on one or more medications to help improve elimination, but ironically, drugs intended to improve constipation often place the person at higher risk for impaired bowel function. Adequate active movement or exercise is also important to bowel function. Controlling these factors, along with training caretakers to recognize the signs and symptoms of bowel problems at the earliest moment can greatly reduce occurrences of illness or death from bowel obstruction.
Seizure deaths can occur from episodes of prolonged, uncontrolled seizures as well as something called SUDEP or sudden unexplained death in epilepsy. For reasons that medical science has yet to explain, people who have epilepsy have a higher chance of dying suddenly unrelated to actual seizure activity. Drug toxicity and medication side effects can further impact the health and well-being of people who takethese medications, and the balance between adequately controlling someone’s seizures and the risk of adverse drug reactions must always be at the forefront of the treatment plan. Life expectancy for people with active seizure disorders has been shown to be up to 10 years less than those without epilepsy.
Dehydration is all too common and easily preventable in most cases. People who do not swallow well are particularly likely to refuse fluids or indicate fear when they get them, often resulting in dehydration. Dehydration is also likely when fluids are restricted in an attempt to prevent incontinence, not realizing that lack of fluids can contribute to constipation and increased seizure frequency, not to mention drug toxicity and other health problems. Awareness of fluid loss through sweating in warm and humid conditions or from loss due to vomiting or persistently elevated blood glucose levels in people with diabetes is important, as well. The presence of fever also increases a person’s fluid needs. Anyone supporting people with IDD should be aware of a person’s fluid requirements and work to ensure that they receive the necessary fluids to prevent dehydration.
Sepsis, sometimes called “the silent killer” is an ever-present threat to all. Sepsis is a condition which results from a significant infection in the bloodstream and the body’s response to that infection. Early signs of sepsis include fever, chills, rapid heart rate, low blood pressure and mental status changes. Some of these symptoms are common with may illnesses, but one’s index of suspicion should remain high for worsening signs of a serious infection and referral for a medical evaluation should be considered earlier rather than later. The risk of death increases significantly for each hour that passes when sepsis is left untreated. Remember, “When in doubt, send them out!”
Gastroesophageal reflux disease (GERD) is the backing up of stomach contents, including acid, into the esophagus. GERD is frequently undiagnosed in many people, including those without disabilities, until major harm has been done to the bottom of the esophagus. Medications that cause constipation also contribute to GERD. Individuals who are overweight, particularly when they carry excess weight around the abdomen or wear clothing that is too tight have a higher risk of GERD. Ill-advised dietary choices, immobility and improper positioning also contribute greatly to the incidence of GERD. As this disorder continues without treatment, discreet or frank aspiration, life-threatening gastrointestinal bleeding and esophageal cancer become increasingly common. Recognizing signs of GERD, especially in people who do not communicate with words, is important to reduce the risks associated with this condition. People who exhibit food refusal, coughing when lying down, physical or verbal aggression particularly around meal times, or distress in the middle of the night may be telling you that they are experiencing GERD. Pica, a behavior where people eat things of non-nutritional value, may also be a sign of GERD and should prompt an evaluation.