How do you spend most of your day?
"Am I dying?"
This is a question I rarely hear explicitly asked. Sometimes people whose bodies and day to day lives are impacted by progressing illness or worsening disease say they want to know what to expect, both how their bodies will continue to change and how long they may have to live.
Sometimes people do not know who to ask or how to ask. Sometimes they stay silent in an attempt to protect their loved ones. Sometimes people do ask their healthcare provider, and they receive a vague or general response that is not helpful to them (read Post 15: What's My Heaven ETA? - The Who, What, Where, When, Why, and How in Asking About Prognosis).
"You're doing fine."
"Everyone is different, so I can't say."
"It depends. Let's see how you do."
It is true no human being can say precisely when another human being will die. We may have an idea through studies and research that indicate a wide range of life expectancies for people with specific diseases, such as congestive heart failure at different stages, varying degrees of dementia severity, and cancers of different types and stages.
Prognosis that is more tailored to an individual may be based on a person's physical ability to care for themselves (read Post 24: A Cloudy Crystal Ball - Predictors of Prognosis Part 1 of 3); changes in appetite, eating, and weight (read Post 26: A Cloudy Crystal Ball - Predictors of Prognosis Part 2 of 3); and their daily level of energy, alertness, and symptoms.
The following are questions healthcare providers may ask, or a person or family member may ask themselves, about daily energy levels to get a sense of how a person is doing.
Question #1 How do you spend most of your day (and how is this different from 3 months ago, 6 months ago, and 12 months ago)?
"Like that," a daughter points to her father nodding off on the living room couch, "He spends almost all day and night like that."
"What I want most is to have peace and rest. I want to be allowed to lie down and sleep whenever I want."
Are you spending more of your days awake, alert, and moving about? Or are you spending more of your days sitting, sleeping, and resting?
One of the questions oncologists ask to help them determine if a powerful chemotherapy could be more helpful than harmful is "Are you out of the chair or bed at least 50% of the day?"
Question #2 How have your activities changed due to change in energy?
"I used to love watering the trees, the flowers, the grass. Now I can't. I don't have the energy to hold the hose."
"She used to sew all the time. And now she naps all the time."
Have you had to let go of outings or hobbies because of decreased energy or increased fatigue? Are you being purposeful with your activities, conserving your limited energy to one or two main activities or events each day?
"Today I'm going to do my laundry. That is my event for the day. I'll still have to take breaks. Maybe I'll do the washing today and the folding tomorrow."
"A long time friend is coming over this afternoon to visit, so my sister's resting this morning. She wants to be alert for her friend."
Question #3 How often do you see the doctor or go to the hospital for worsening symptoms or increased weakness?
"My dad's been to the hospital practically every three weeks for fluid buildup. The pills are not enough to keep the fluid off."
"I went to the hospital because I keep falling. The first two times I called the fire department. They're so nice! They helped me up off the floor, and I didn't think I needed to get checked out. This last time they said I was a little out of it, so they took me in. The hospital gave me fluids and told me to follow up with my oncologist, which I'm not planning on doing! I almost fell yesterday but I fell back onto the bed, not on the floor, so I don't count that one. I just need more help around the house, that's all."
Are you experiencing increasing frequency of uncomfortable symptoms, worsening severity of symptoms, increasing number of exacerbations (that is, flare ups) of an ongoing disease, or more episodes of dehydration or weakness resulting in confusion or falls necessitating urgent care or emergency room visits?
Are these visits to the clinic, urgent care, emergency room, or hospital becoming so frequent that they are impacting your overall quality of life?
Question #4 For caregivers, how often is your loved one more confused or less alert?
For caregivers, is your loved one less aware of what is going on around them? Have you taken over the running of the household, the finances, the coordination of appointments and filling of pillbox, the meal preps? Are you the one now speaking with your loved one's specialists and making decisions for your loved one?
Sometimes I hear family members say, "He's still of sound mind. He can still make his own decisions." That may be true, and a person may have "good days" when they are more alert and engaged.
However your loved one likely does not have complete capacity to make all decisions entirely on their own if you as the caregiver would not feel comfortable with your loved one meeting with a healthcare provider by themselves to fully comprehend, retain, and implement information and recommendations (read Post 10: Four Simple Questions to Determine if a Person is of Sound Mind).
Is your loved one hallucinating? Are they talking to family members who died many years ago? Do they sometimes become confused with whom they are speaking with today? Do they forget visitors from the day before or comments made earlier that morning?
Is your loved one primarily sleepy or sleeping most of the day and night, not conversing or interacting much with family and friends?
Has visiting the doctor's office become much more burdensome than helpful?
Many times sudden changes in alertness and mental clarity are due to a "fixable," reversible cause such as and not limited to infection requiring antibiotics, dehydration requiring additional fluids, or medication side effects that require a dose change or discontinuation.
If the changes are persistent and progressive over time, or no "fixable" cause is found for a rapid decline, these changes could indicate that the person's severe illness or advanced disease is worsening and that changes are likely to continue until they die.
Depending on the severity and speed of changes in energy level and alertness, prognosis could be longer at weeks to months or shorter at days to weeks.
Regret can be a terrible burden. I hope the information about prognosis from A Cloudy Crystal Ball - Parts 1, 2, and 3 help people with severe illness or advancing disease make sense of their changing bodies and encourage them to prioritize their alert hours and limited energy on what is most important to them (read Post 8: I Want the Best Care Possible for ME - Part 2 of 2). I hope the information help people savor their relationships with those they love and initiate conversations with those they want an improved relationship. I hope people are able to make use of this information and experience closure more so than regret at the end of their lives.