Part 2: Prognostic Indicators of Specific Diagnoses

I’ve got your diagnosis right here, buddy. It’s on your permanent record.

First, what qualifies us for hospice? What are the Criteria, or General Guidelines, for being hospice certified and recertification?

Above all, the patient should be exhibiting a “terminal condition” based either on that big fat diagnosis or a combination of diseases. Individuals or their family cannot just decide of their own native intelligence that Aunt Jane seems ‘on her way out’ and so shortly will begin her dying, but instead must be informed of this high probability from a “qualified medical provider” of a “grave, non-reversable” condition. As I said before, we cannot be trusted to know that we’re dying. You’re not officially allowed to use the modifier ‘terminal’ until the doc says it; nobody is dying just because they’re saying so. “Mrs. Gump, your boy is different.” A little more than that but coming from a physician. This goes especially for teenage daughters who insist they’re dying because of unrequited love, or because they can’t break 11:00 p.m. curfew “just this once”.

I can’t tell you how many times I said to others around me, just to get some sympathy, “I’m dying here”. Of course, I’ve also tried to tell my teenage daughter I was doing Pilates after merely picking up a few things from the floor. I don’t think she ever took what I said at face value after that.

Next, only symptom relief is sought and no cure. (Assume pain, breathlessness, ongoing infections, swelling — what have you — will need regular tending to from then till the end after their showing up.)

In addition, you must either have a 10% unintended, progressive weight loss over the prior 6 months. You also might submit your poor serum albumin, a measure of your circulating proteins, less than 2.5 mg/dl, but you should have significant weight loss as well; or you must have good documentation of disease that has progressed. This documentation comes from: 1. physician assessments, labs, image, or other studies; 2. a string of emergency department visits or inpatient hospitalizations in the 6 months prior; 3. very good home health or nursing documentation if you can’t get out of the house.

Let’s start with ALS, amyotrophic lateral sclerosis. Nerves in this disease fail to activate muscles (denervation), so eventually one will not be able to swallow or breathe. This 90% non-inherited disease will suffocate and starve without prior placement of endotracheal ventilation or a gastric feeding tube. People can get along okay with full-time mechanical respiratory assistance and a liquid diet, but if vents and tubes aren’t wanted, the horrible nature of ALS is that higher cognitive alertness continues throughout the dying process. One is fully conscious while realizing that the disease is preventing swallowing and breathing.

In hospice, disablement from widespread muscle denervation is entire, meaning everything or almost everything is required to be done for the patient. Skin is at high risk for breakdown. Respiratory infections are typical and ongoing. If you don’t die from runaway skin ulcer infections leading to general sepsis (promoted by poor nutrition), or from the inability to recuperate from yet another pneumonia, then you get to draw your last breaths with massive oxygen and lorazepam/morphine doses to ease the respiratory failure.

Isn’t this fun? If you say yes right now, I’m not sure I want to know you. Every time I get an ALS patient, I’m not very happy, because they’re a lot of work. But so far, they’ve been men and typically have great gallows humor, developed perforce. No set pattern of disease progression is known, so careful assessment of subtle changes in movements, speech, alertness, and respiratory competency must be judged from unique starting hospice baselines starting hospice baseline. I have to say a whole lot more on behalf of the recertification criteria then the fact that Joey used to tell me “screw off”, and now he can only say “ru off”. To judge critically impaired respiratory function, you need a forced expiratory volume of less than 40% and 3/14 different signs or symptoms. Difficulty breathing at rest, difficulty breathing while lying down, using extra muscles just to breathe, breathing more than 20 breaths per minute, weakened cough, frequent awakening, unexplained: headaches, confusion, anxiety, or nausea (each count as separate signs). It’s a good idea to have well-trained neurologist and respiratory therapist handy, early on.

All this talk and nothing yet about cancer? I bet you thought I was going to start talking about cancer right away. I’m taking disease alphabetically that are likely to wind up qualifying their owners for hospice.

If you thought ALS seems bad, you probably haven’t taken care of the walking disaster of a noisy partner or parent growing slowly into a late-stage Alzheimer’s dementia.

Now who’s curious about how we’ll probably die from Alzheimer’s dementia. Not so FAST, there, buddy. I think there’s plenty so far to chew on here. We both deserve some rest before looking through the seven stages of the Riesberg Functional Assessment Staging (FAST) Scale.

Last time I said that I would devote a specific blog entry for the FAST scale, along with a few other assessment tools. Instead, I will expand in more detail than is typically thought of, even by hospice practitioners, of this scale that is inseparable from indicating eligibility for hospice in Alzheimer’s dementia. It’s specific to our next diagnosis.