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Rookie Mistake

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!

 

 

 

 

 

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Nice article to learn.. I agree with you that a dying person’s condition can change very rapidly.. No one could judge it..

I used to do inpatient hospice at my old job, and it was SO hard when families asked when I thought their family member would pass. Some people hang on for days, and people who I think will go home and live for a few more months die within a few days. So unpredictable, except when those final stages start…agonal breathing, mottled feet. Even then people can hang on much longer than I would expect.

[...] are a few things worth noting on the Web today. At Code Blog, “Rookie Mistake” is illuminating on the subject of switching nursing specialties. Here’s a short excerpt: My [...]

In my ICU I often have patients families ask me the “when” question. When are they going to die, when will they get better, will they recover? I usually answer with the “everyone is different and I can’t predict” along with “people surprise me all the time”.

Sometimes I find that we in the ICU do not do death and palliative care well. I was lucky as a student and had wonderful placements within palliative care. I wish that some of my coworkers had even a little bit… I can understand why you made the switch over.

hi.my name is sepehr elmi.im operating room student.im from islamic republic of iran.
i want know your idea about the operating room nursing?? thanks

Wow, what an intense story. I’m so glad that the family you’d spoken with was stoic and understanding of the uncertainties of the situation, and that they were able to find some comfort in your advice and explanation of the symptoms that were on the way. At least you were able to give them that, when it wasn’t possible to be 100% correct.

Ugh. Aspiring hospice nurse here. I feel for you — my aunt died in ICU on 9/3 and the number one question we asked everyone was “How long?” We were really looking for some clue as to days vs weeks — did we need to tell her brother to find a way to fly up *now*, or was waiting for his scheduled flight in 48 hours possibly ok? And everyone just shrugged. After a while I made a chart of her vitals and determined that her BP, HR, and resp had been slowly but steadily declining for 8-12 hours and decided that tomorrow would be too late.

I imagine (today, with no education, lol), when it’s my turn to answer that question, I will try for something like ‘I’m 65% confident that they will survive the night’. Of course, in the end . . . I suspect the family is not asking merely ‘when?’ but also ‘how will *I* survive?’ and a whole host of other things that truly can’t be answered.

Finally, a tip for newbs: if your patient’s niece notices that the dose of demoral should’ve worn off about 5 hours ago, and asks how one knows when the patient is sleeping vs slipped into unconsciousness, do NOT assure the niece that the person is merely sleeping and then vigorously & loudly attempt to wake patient. Especially do not do this 20 minutes before the doc gets on the phone to tell niece that patient is not going to regain consciousness. (crikies, she meant well, but I do not want her on my deathbed!)

Oh — can I get an opinion on something?

My aunt died in ICU with myself, her sister, and her son present. There were 2-3 beds open. About 10 minutes after her heart stopped, we’re standing there crying and murmuring to each other, when a doctor I’d never seen entered the room with the nurse behind him, the nurse alerting us that we needed to leave the room so they could do some things. I asked if it was REALLY necessary that we leave the room, and was it REALLY necessary that these things happen at this exact time, and they repeatedly assured me that it was and made us leave the room.

I was furious. I feel like, once their patient dies, the emotional needs of the family become their ‘patient’, and there was no reason to interrupt our grieving process with a big announcement and forcing us to exit the room. He could’ve quietly come in and verified her pulse was absent, or he could’ve waited. Later the nurse assured us that we could stay as long as we liked — it wasn’t an issue of another patient needing the room.
Suffice to say that I confronted the doctor later and he again insisted that, yes, whatever they did HAD to happen at that moment. And then I confronted him a second time (yeah, I’m a brat) and he defended himself with “it’s hospital policy” and “no one has ever complained before” (lamest excuses EVER).

So, people who are smarter than me: am I missing something?

That sounds a bit fishy to me, I guess. I have never had reason to ask the family to leave the room after the patient had died unless it was to prepare the body to go to the morgue, but I never kicked them out to do that; I waited until they were done.

I don’t know of anyone who would ask the family to leave just to confirm death.

I’d be very interested to learn what they did. Sounds like maybe they are hiding something?

Thank you for taking the time to share your stories. I just found this website, thus those of you who have shared your personal stories provide so much potential for learning. I think it takes a lot of courage to write a story related to personal mistakes or things we would have said or did differently. We all started this profession as novices, therefore learning from mistakes of others, ranging from minor to major can contribute to our learning. Thank you for sharing this, I think you have made a valid contribution to the development of our profession.

Thank you for sharing this. I’ve heard a few stories similar to what you’ve experienced with terminally ill patients, and some say that those that are close to dying may sometimes experience a burst of energy after having low level of consciousness for a long time. Sometimes they say the quick change in status can be indicitative that the time is near. Really appreciate what you do in your hospice job. I’m not a nurse that can deal with such an emotionally taxing position. Thank you.

its awesome. very good one

Wow, what an interesting article to read! I takes a lot of courage to care for a dying patient so much more if it is your first time on ICU :(

Great posts! I am an RN as well since 1996. Lately, I have been getting many questions and requests related to flights and getting money back for flights and should I go on XYZ trip? Sick people are taking trips they shouldn’t be taking without proper preparation, and they want ME to put a stampt of approval on it. Nope, I talk people through the logistics of making their own decisions; example, “What are you going to do in Italy on that 14 day land tour? Where is your medical help? Do you feel confident that you will have enough medication and supplies to enjoy yourself, be safe, and have your partner enjoy him/herself as well? Who is going to push your wheelchair? What about handicap accessibility? Many other countries are not as “handicap friendly” as we are here in the United States. Have you discussed this with your wife and does she understand all this?” A little bit of common sense really goes a long way these days!

Geena, I’m glad there’s someone as wonderful as you in hospice now. Please don’t beat yourself up for your response to the family. Had you been taking care of one of my family members, I’d have been perfectly fine with that response!

[...] Highlight: Rookie Mistake [...]

I am a student nurse right now and I have yet to encounter a dying patient and their family so I appreciate reading your experience.

Being a Paramedic in the field you learn this very quickly. A normal appearing person can crash quickly and next thing you know you are using your CPR training!

I find your blogs very useful. I am a Nurse Educator and planning to shift to hospice nursing.

[...] Highlight: Rookie Mistake [...]

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  • profileI am Gina. I have been a nurse for 15 years, first in med/surg, then CVICU, inpatient dialysis, CCU and now hospice. This blog is about my experiences as a nurse, and the experiences of others in the healthcare system - patients, nurses, doctors, paramedics. We all have stories!

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