Post 26: A Cloudy Crystal Ball - Predictors of Prognosis Part 2 of 3
Updated: Nov 30, 2022
How has your weight changed in the past year?
When a person living with serious illness or advanced disease wants a meaningful response to the question, "How am I doing?" (read Post 15: What's My Heaven ETA? - The Who, What, Where, When, Why, and How in Asking About Prognosis), several factors are taken into consideration.
In Post 24: A Cloudy Crystal Ball - Predictors of Prognosis Part 1 of 3 and Post 28: A Cloudy Crystal Ball - Predictors of Prognosis Part 3 of 3, I explain how answering the questions "What do you have trouble doing now that you could easily do for yourself before?" and "How do you spend most of your day?" can provide an idea of a person's health trajectory or prognosis.
Other questions healthcare providers may ask, or a person or family member may ask themselves, are related to a person's swallowing, eating, appetite, and weight.
Question #1 How much are you eating now?
The question is not asking exactly how many calories you are taking in each day. It is to get an idea of of how much you are eating relative to what most people would consider "reasonable." There is a difference between eating a chicken salad sandwich and chips versus drinking two sips of soup in a typical sitting.
"She's not eating much at all."
"What is she eating?"
"She only eats half the fish I bake for her. She only eats a couple bites of the vegetable stir fry I make for her. It is so frustrating."
"Does she eat any snacks?"
"Yes! She eats whole bags of chips. If I don't watch her, she'll eat ten Oreo cookies in a sitting! She loves mixed nuts, especially any nut with barbeque flavor, so she'll go through a can every two days."
"So, it sounds like she eats snacks moreso than meals, which is frustrating to you."
"Yes, she won't eat my cooking. This has been an ongoing struggle ever since I moved in five years ago."
"Okay. So when you say, 'she's not eating much,' you mean she's not eating much of the meals that you prepare for her. Otherwise, it sounds like she is eating the same amount and the same type of foods she has eaten for years."
Note everything you are eating - meals, snacks, and drinks. I started to feel concern when a woman repeatedly told me that she hardly ate anything and what she listed was so little. She said she had eaten like this for years. With further questioning, I learned that she blended most of her foods and drank them like a thick smoothie because of a stomach issue from years before.
High calorie nutritional drinks (ex. Boost, Ensure, Glucerna) also count towards the daily intake.
Question #2 How much were you eating 3 months ago, 6 months ago, or 12 months ago?
"I finish my plate" is not the same as "I'm eating the same amount as 6 months ago."
Are you preparing less and less food for yourself, so that though you are technically finishing your plate, you are still eating a much less quantity of food than before?
Question #3 How has your weight changed since 3 months ago, 6 months ago, or 12 months ago?
Even if you do not own a scale, have you noticed changes in your body shape or changes in how your clothes fit? If you regularly visit a primary care physician or specialists, likely these offices are recording weights each visit.
If you own a scale, recording at least once monthly weights may be helpful in noting a trend over time.
Question #4 How is your swallowing?
Are you coughing when you swallow liquids and/or solid foods? Are you having to cut food into smaller and smaller pieces in order to swallow them?
As a person's health or medical condition worsens and they become weaker with their arms or lose balance with their legs, so they may become weaker in other parts of their body such as the throat muscles. The throat muscles may lose the ability to coordinate for a safe and smooth swallow. A person may start to experience symptoms while swallowing solids or liquids, such as coughing, gagging, choking, or sensation of food getting stuck at the throat.
A swallow evaluation, which may include speech therapy involvement or certain x-ray tests, can reveal if a person is not swallowing certain textures like they are supposed to be swallowing. It might show that certain textured foods or certain textured liquids are being "aspirated," which means food, liquid, or saliva are accidentally entering the windpipe, airways, and possibly lungs. This can cause irritation and inflammation in the lungs, overall increasing the risk of pneumonia.
The speech therapist may make recommendations on types of textures to eat, head or body positions to hold while swallowing, and other techniques to minimize the risk of aspiration.
Sometimes a person who aspirates does not like the recommended pureed textures and ends up eating less. Sometimes they decide they would rather eat the foods they enjoy, even if they are aspirating, because the daily burden of eating unappetizing textures outweighs the benefit of decreasing the risk of a potential aspiration pneumonia.
There are many potentially fixable or reversible reasons for why a person with serious illness or advanced disease is eating less. Reasons include, and are not limited to, nausea (due to various reasons), constipation, diarrhea, reflux, abdominal "belly" pain (due to various reasons), mouth pain (for example, from thrush or ulcer), tooth pain, lack of dentures and difficulty chewing, change of taste (due to age, illness, or medications), dry mouth (usually due to medications), loneliness, depression, thyroid disorders, forgetfulness (either forgetting how to prepare meals or forgetting to eat meals), or the need to "save" money by not buying food.
Sometimes, after weighing potential benefits over potential burdens of side effects, appetite stimulants or high calorie nutritional supplements are attempted. They may increase appetite or result in weight gain for a period of time.
If all reversible or fixable issues are addressed, and a person still has low appetite and is eating less due to worsening health or medical conditions, likely this loss of appetite and decreased eating will continue and the person will lose weight if they have not already (read Post 45: How Can I Encourage My Loved One to Eat? - 8 Tips to Consider).
This irreversible loss of appetite, decreased eating, and weight loss due to a person's worsening medical disease or illness may be one of the indicators that the person's prognosis is weeks to months, depending on how quickly the person is eating less and losing weight.
Because weight loss is a predictor for shorter prognosis, continued weight loss or unintentional weight loss of amounts such as 5-10% of a person's previous weight over a recent time period of 3-6 months is one of the many things a hospice agency may look for when attempting to determine if a person with worsening health conditions or advanced medical disease is "eligible" for hospice support (read Post 2: Five Major Ways Palliative Care Differs from Hospice).
Being more aware of changes with these predictors of prognosis will hopefully result in more timely conversations about what is most important to a person (read Post 8: I Want the Best Care Possible For ME - Part 2 of 2). Hopefully, it would result in a person completing their advance directives if they had not already, specifically the medical power of attorney [read Post 4: Eleven Common Myths about the Medical Power of Attorney (MPOA)], and discussing resuscitation wishes (read Post 5: CPR on TV versus CPR in Real Life - Three Ways They Differ).
Hopefully, it would result in a person prioritizing their awake and alert times for the people and activities that mean the most to them.