It has been almost two years since I have posted on this blog. I haven’t had much to say. My job isn’t really that terribly interesting. I do telephone triage for hospice, which means I take calls from patients and families and help them over the phone with all kinds of issues.
Not Nurse Ratched has also found her way to hospice, albeit as a case manager that actually goes out and spends time with patients. She recently wrote a post about a process at the end of life we call actively dying. If you’ve ever wanted to know what goes on with a person’s body while they are close to death, that’s a great post to read. That post inspired me to write this post.
And this post is about “transitioning.” If you’ve been in nursing or medical school, you’ve learned the word “transition” as it relates to having a baby. The stages while you’re in labor are early labor, active labor, then transition, then you have a baby. These are somewhat reversed for someone who is dying. “Transition” comes first, then the person enters the stage that we call “actively dying.” I certainly had some confusion when first starting out and hearing that a patient was transitioning. I immediately thought of the stages of labor.
Some interesting things happen during transition. This is around the time that they may stop eating or drinking. As Not Ratched indicated, the body’s muscles are starting to fail. The person may no longer be hungry or thirsty. This is incredibly distressing for loved ones. It is a clear indication that the person is not going to be alive much longer and cuts through even the most stubborn denial. I get many calls for “mom stopped eating and drinking… won’t she starve?” At this point, giving food or drink to someone who is dying can actually have detrimental effects. Digestion is slowing way down; food will just sit in the stomach and cause nausea. The kidneys are no longer functioning well; if you give the person fluid it often ends up in the lungs causing breathing difficulties. Or it can end up in their arms and legs as edema/swelling – also not comfortable. Some well-meaning loved ones try to give food and fluid anyway, even if the patient is barely conscious. The patient cannot swallow well (if at all), so they end up aspirating it into their lungs, which causes infections and breathing difficulties.
Not only are the body’s muscles failing – the brain is failing, too. Often a patient in transition will become agitated, want to change position frequently or will pick at their clothes and bedding, or try to get out of bed even though they no longer have the ability to do so, resulting in falls or injuries. This is also a distressing time for families, not to mention exhausting. It’s difficult to watch someone be uncomfortable and not be able to do much about it. Towards the end of the transition period as they start the active phase of dying, the brain’s ability to regulate the body’s temperature fails. Often people close to death have fevers for seemingly no reason, with no signs of infection. When I start getting calls about a patient having a high temperature, I know the end is getting pretty close.
The most interesting part of transitioning, (for me) is when the patient starts talking about – and to – those who have died. Sometimes the patient talks to those who have died before as though they are sitting right next to them. They may start referring to transportation: asking loved ones if they have their ticket, telling them they have to pack, that they are about to take a trip and need everything to be ready. I’ll get calls where the family will say, “he’s talking nonsense, something about getting a bus ticket and his suitcase so he can go meet his wife. His wife has been dead for 10 years, why would she be at the bus station?”
The final part I’ll talk out in transition is also the most difficult for some people to understand. So I’ll tell a little story: When I was in high school, I worked as a CNA in a skilled nursing unit located in a hospital. There was a patient there who was being treated for cancer. We’ll call him Ray. I was responsible for taking care of him, so I’d feed him dinner and chat with him. At first he’d eat almost everything on the tray and very much enjoyed talking. Over time, each weekend I’d go in and he’d be eating a little less, talking a little less – until it became clear even to me as a naive teenager that he was dying. Towards the end he was eating nothing, sleeping or laying in bed staring off into space, no longer interested in talking. We did our best to make him as comfortable as possible. I was sure by the next weekend that I worked he would be gone.
The next weekend came and I went to work as usual, and was assigned to Ray. Thinking surely he was close to death I walked in his room and he was awake and sitting up. I asked him if he was hungry and he actually ate food from his tray! He was as chatty as ever. I was really confused. I thought he was getting better! A couple of days later he was dead. I asked the nurses about why he seemed so much better and they said it was something that sometimes happens to people who are dying – sometimes they rally, have a lot of energy, are awake and talking to their family and friends, even eat and drink. By the next day they are back to the work of dying.
So those calls I take might be the worst – the ones where the family calls and says, “yesterday they were doing so much better! and now she’s back to sleeping all the time, no longer eating or talking to us. What happened?” and then I have to explain this weird cruel thing that happens towards the end and that it’s normal. But is it cruel? I’ve read stories of people getting their last goodbyes in, enjoying these few moments when the patient is once again conscious and interactive. I prefer to think of them as bonus moments. They really are.