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  • Jeanne Lee

Post 95: Statistics Is Not Prognosis

Discussing prognosis can cause more anxiety than good in some...and it may relieve anxiety and the overwhelming sense of uncertainty in others.

 

As a palliative care physician (read Post 1: What Exactly Does a Palliative Care Specialist Do?), I witness various ways healthcare provider colleagues discuss (or avoid discussing) prognosis.  Widely differing styles and wording are used because healthcare providers rarely receive training on identifying when to discuss and then actually discuss prognosis.  

 

Sometimes, I hear statements about prognosis that are based on study statistics rather than characteristics of the individual patient.

 

 

"Your father's cirrhosis is severe.  We calculate a variety of factors to come up with a score called the MELD [Model for End-Stage Liver Disease] score, and his is 30, which  is high.  People with this score are considered to have a 40% chance of surviving six months."

 

I remember sitting next to the hospitalist as he said these words and watching the facial expressions of the daughter of our patient.  She nodded, but her expression and body language remained unchanged.  It was unclear if the statistics held any real significance or meaning for her.  I then tried to explain her father's prognosis in a way that would seem more relevant to her and her father's situation (based upon years of experience holding family meetings as a palliative care physician).

 

"People with cirrhosis may start out living several years with this diagnosis as long as they don't have troubling symptoms - for example, your father has been okay the last several years.  But as long term damage, scarring of the liver, and therefore cirrhosis worsens, there comes a point when the liver fails to work.  That's when you see a more rapid physical decline and symptoms like uncomfortable leg swelling, belly swelling requiring fluid to be drained from the abdomen, confusion from ammonia build up, and increased risk of bleeding because of changes in clotting factors and increased risk of vomiting blood because of changes in the anatomy of the esophagus and stomach.  It sounds like your dad's cirrhosis is at this stage.  Unfortunately, it's at this time that the average prognosis, or life expectancy, transitions from years on average to months on average."

 

"I see," the daughter nodded again, this time more animatedly as she jotted notes in her notebook.  "Ummm...are you able to give a better estimate on how long Dad has?"

 

"It depends on how your dad's body does because everyone is a little different.  If your dad is able to maintain some strength and continue walking every day as well as maintain some eating every day, then his prognosis will be on the longer end of that months range.  He'll still be at high risk of coming back to the hospital for complications related to severe cirrhosis.  If and when there comes a point when the cirrhosis is so advanced that your dad is coming back to the hospital multiple times or his body is so weak that he spends most of his time in bed or most of his hours sleeping and/or his body is not wanting food anymore and he is no longer eating...we would be worried then about his prognosis transitioning to weeks or possibly even days."

 

"Okay, that makes sense," the daughter slowly replied, "That's helpful to know.  In that case...since Dad is still able to walk a little bit with the walker... I would want to focus on his getting stronger with home health physical therapy.  Maybe... when he's too weak to walk...we can re-discuss focusing on quality of life at home with hospice support (read Post 23: When to Consider Hospice Support - Example #1)."

 

 

 

"Terminal" diagnoses such as "stage four [any] cancer" or "end stage [any organ] failure" are scary to hear and sometimes difficult to process.  The word "terminal" or "poor prognosis" can be especially difficult to understand because these words are often used to describe patients who have on average hours, days, weeks, or months to live; that is a wide range (read Post 9: How Terminal is Terminal?). 

 

And sometimes, healthcare providers may throw in statistics that you may have difficulty interpreting with regards to their relevance to you or your loved one.  Two patients living with severe cirrhosis may have the same MELD score - with higher score ranges correlating with higher six-month mortality rates - but one patient may be bedbound, sleeping most of the day, and drinking a few sips of nutritional supplement such as Ensure each day while the other patient is walking ten steps with a walker with physical therapy and eating at least half of their plate at least a couple times per day.

 

In general, regardless of survival rate statistics, the most relevant prognostic factors to consider for an individual person living with serious or complex illness is the amount of decline they are experiencing  - decline in strength, decline in energy, decline in ability to move around and care for themself such as showering and using the toilet, decline in alertness, decline in appetite, decline in weight, and/or declining ability to remain stable outside the hospital and therefore requiring repeated hospitalizations (read Post 24: A Cloudy Crystal Ball - Predictors of Prognosis Part 1 of 3, Post 26: A Cloudy Crystal Ball - Predictors of Prognosis Part 2 of 3, and Post 28: A Cloudy Crystal Ball - Predictors of Prognosis Part 3 of 3). 

 

In fact, regardless of underlying diagnoses ranging from dementia to cancer to congestive heart failure (CHF), the above factors are pieces of information that hospice agencies look for to determine a person's medical eligibility to receive hospice support.  They are trying to answer the question, "Does this person have health conditions that on average would give them a prognosis of months if these health conditions were to follow their natural course?"

 

(And we should only discuss prognosis in terms of ranges and averages because an individual may live much shorter or much longer than the average.)

 

Discussing prognosis can certainly cause more anxiety than good in some, but it may greatly relieve anxiety in others (read Post 15: What's My Heaven ETA? - The Who, What, Where, When, Why, and How in Asking About Prognosis).  I hope for those who are looking for answers related to prognosis that this blog post is helpful in a time of uncertainty.

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