My new hospice job is going pretty well. I really like it. It’s been an adjustment, but worth the stress of change.
Overall, I’ve been pretty surprised at how little I know/knew about how people die naturally.
In ICU, if you are actively dying, you look terrible. In most cases, people dying in the ICU are there because we were or are trying to save their life. This requires some treatments that cause other problems. The fluids and medications we give cause pretty severe swelling. Add in mechanical ventilation and the patient may even end up with scleral edema – where the whites of the eyes fill with fluid from pressure and swell to the point of not allowing the eyelids to fully close.
Don’t Google it. It isn’t pretty.
The medications can also cause the circulation in the extremities to shut down, leaving them cool (or cold) and discolored. Really discolored… we’re talking blue. And even if the patient is on a ventilator, they can still do what we call “fish breathing” which looks exactly how it sounds. It looks like the patient is gasping for air, even if 100% oxygen is being forced into their lungs 20 times a minute.
That is what dying looked like to me for 14 years. Turns out it’s a pretty exaggerated version of how it is when people naturally die without life-saving interventions.
On my second night out sans preceptor, I was called to a house early in the evening to help with symptom management. I was told that the patient was minimally conscious and was starting to have labored breathing. The family had started giving oral morphine liquid to help with this and were panicking about the whole thing a little. I went and assessed the patient. She was mostly unconscious, her breathing a little labored. I provided a lot of education about what they could expect as the process continued and how often to give medications. I really spent a lot of time talking with them about what was happening.
The family’s greatest concern was that she was going to die that night. They just weren’t ready. They didn’t want to fall asleep only to wake up and check on her in the middle of the night to find her gone. Things that are already difficult are made all the more so for some people when they happen in the quiet loneliness of night.
They asked me if I thought it would be that night. Honestly, despite being unconscious and breathing a little differently… ok, maybe her color wasn’t great, but it wasn’t awful – her feet felt only the tiniest bit cool and weren’t discolored at all (there was no mottling, which is when the skin becomes discolored and blotchy). Compared to what I was used to seeing in patients who were dying, she didn’t look too bad.
So with my inexperienced eye and a desire to tell them what they wanted to hear, I fairly confidently said that I couldn’t say for sure, but I didn’t believe she would die that night. Their relief at hearing this was obvious. The taut faces and bodies in the room eased a little. The aura of the entire room changed. An actual hospice nurse just said that their mom would probably make it through the night.
Show of hands – how many of you reading that just slapped your foreheads in disbelief? I did as soon as I got back into my car and spent the drive home beseeching death to keep its scythe to itself until after the sun had risen again.
I was on all night. I went to bed a couple of hours later after again offering up a silent request that she make it through the next 8 hours. I didn’t mind having to go out in the middle of the night. I just didn’t want to be wrong. “Ok, I get it,” I said to the universe. “I shouldn’t have said that and I will never say anything like it ever again please just don’t let her die tonight please please please thanks.”
The chime of my phone woke me up a few hours later. It could have been for anything, for any of the patients that we have on service. “I have a time of death visit for you,” the triage nurse said. My fogginess cleared up in an instant. “…. Who?” I asked. When she spoke the familiar name, my shoulders slumped.
I felt awful. I drove to the home in the darkness, nervous about what to expect. Would they be angry with me? I would have deserved it.
I arrived at the home and when they answered the door I told the teary daughter that I was so sorry for her loss. She just nodded. I asked if I could go back to see the patient and confirm the death. She opened the door to let me through. After looking at the patient, I turned to the daughter and said I was sorry about what I’d told them earlier. She nodded again and was quiet. But then said, “You did a great job telling us what to expect, though. Her breathing changed a few hours after you left and we checked her feet – they were cold and didn’t look right. I knew it was close.” That made me feel a little better.
I would say that “When do you think it will be?” is by far the question I am asked the most. Interestingly, sometimes patients I think are pretty close actually hang on longer than I expect, and the opposite is true – patients who seem to be far from dying die much sooner than I would have guessed. The best example of this is a patient I went to see one night. He had been conscious that afternoon but was mostly unconscious by the evening. I was called out because he’d been having periods of apnea (not breathing). The entire time I was there his breathing was perfect. His vitals were perfect. I felt a very strong radial pulse. His extremities were warm and pink. The family asked me in about 10 different ways when it was going to happen. I just said that he had some signs of death being close, but not others and that it was hard to say.
He was dead by morning.
So I have learned that a dying person’s condition can change very rapidly. This is different from what I’m used to for sure. The ICU course follows a fairly predictable pattern most of the time. Not so predictable outside of the hospital!