The last years of life can be filled with a repeating cycle of serious illness, and recoveries that seem to restore us to a reasonable state. We can find ourselves moving from one episode of congestive heart failure, or COPD exacerbation, to another, and returning to our homes, back to approximately how functional we were before.
In these situations, and others, it may not be clear exactly how much time we have left. If we are hoping for a peaceful death, it is harder if we don’t know how rapidly it’s happening. Of course, we are all dying every day – that is what we are moving toward, without exception – but the rate, the speed at which we approach our end, is frequently not too clear.
Making this worse is that our mental faculties can erode as we get older and sicker, making it more difficult to understand what is going on, and to perceive its meaning. We can have trouble focusing from hour to hour, from day to day, and without observation of change, which requires memory and concentration, it is hard to tell how fast change is occurring.
So we ask ourselves: how do we trigger hospice, or palliative care at the right time?
There are guidelines on this. For example, one study of advanced cancer patients showed that shortness of breath, not eating, and certain abnormalities in the patient’s white blood cell count (WBC) helped predict immanent death fairly well. A doctor’s opinion actually added a lot to the statistical model they created, as did the patient’s ability to function physically.
In my experience, indeed, patients with severe illness who don’t eat, lose weight, and stop being able to walk are approaching the end of life. I suppose that’s just common sense, and maybe approaching axiomatic, but there you have it.
We can ask professionals. But remember that doctors have their biases. There is so much uncertainty in medicine that each doctor must take an approach to it on their own, though they sometimes take refuge in the global perspective of their specialty. So the real best answer on how fast you are dying may or may not come from whatever doctor is standing in front of you.
You can look for another doctor for a second opinion. This is never a mistake. Many patients will be afraid of offending a doctor they have known for years by seeking advice elsewhere, but doctors are generally mature enough not to be offended. After all, doctors seek opinions from each other all the time.
Nurses are tremendously trusted members of the health care team. I have seen ICU nurses say, quite appropriately from a holistic perspective, “What are we doing here?” when it is clear that medical care is futile. (Of course, frequently care continues because the family of the dying patient does not understand or believe the medical team’s opinion that further medical care is futile.) I think the gestalt of a nurse – the overall impression that a nurse has of a patient – is a pretty good indicator of how much time a person has left, and what quality of life that time might involve.
You can talk to your family. Sometimes they know. Of course, they may not want to talk about it. They may think they are protecting you in this way. And family members' opinions sometimes are biased by how much they love you and want to keep you around.
In the end, we are stuck with some uncertainty, because there is so little we actually understand about the body and illness.
I tell my patients that they will know when they have had enough - enough medical treatment, trips to the hospital, blood draws, waiting in doctor's offices, and so on.
When this happens, you are effectively deciding that it's time to die. The pain of going on is not worth it. And this is a reasonable decision.