A good rule of thumb for end of life issues should be ‘forget what you think you know about normal.’ This is where much of the confusion and misguided expectations comes from in hospice. People try to overlay what they understand about a healthy or diseased body onto a person whose body is shutting down. The problem is they are not the same. Somewhere along the line, a healthy body becomes diseased, and then, usually unrecognized by most, a transition from chronic disease shifts to actual dying. This transition begins weeks and months ahead of an actual death, and yet everyone surrounding the patient, including the medical team, tends to treat the patient with the faulty assumption that the ‘normal’ rules are at play.
I see this especially in regards to the idea of energy and fatigue. In the normal/chronic disease model, we know that exercise is good. In fact, you have probably been told that to combat fatigue, you should exercise. Expending energy actually leads to a boost in energy. We even have phrases tucked away in our subconscious such as “use it, or lose it”, “no pain, no gain”, and “stay strong, live long”. This becomes ingrained; to get better, or live longer, we must simply get up and move. If you were to put this into a math equation, it would be spend two units of energy and get four units back.
It is no wonder then, with this idea of normal in our minds, why we get frustrated when we attempt to apply this formula at the end of life and it fails.
Both patients and families seem confounded when people aren’t getting stronger, despite forcing themselves to get up and move. They are using it, but still losing it. They experience pain, as families push them to stay active, and yet there is no gain. That is because at the end of life, there are new rules at play.
The energy formula when the body has started to shut down is, spend two units of energy and get zero units back. There is no boost at the end of life when you get up and move, instead people find themselves worn out, and exponentially more tired. A trip to the store equals an afternoon of sleeping. An outing to a family function means the next two days will be in bed. Eventually, even eating a meal will require a 3-hour nap to recuperate.
Unlike what we think of as ‘normal’, to eat more protein, or add more calories, has little effect on the formula. It is important to realize that nothing will increase that day’s allotment of energy. With no ability to increase energy, the day becomes a negotiation of the most important way to spend those units. It may be in conversations, or eating, or completing tasks, or outings; the key should be allowing the patient to decide and not imposing our own ideas of importance on them.
Although the body behaves differently at the end of life, recognizing what the new normal is, will lead to less disappointment and frustration, and ultimately to better quality of life.