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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.






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The Box

During the time that I was a visit nurse, I did a fair amount of death visits.  That’s when the family would call and say the patient had died, then I was to go out and confirm – that is, listen to heart and lungs and confirm that the person had in fact died.

We then helped clean the body and call the mortuary for pick up.  There were the usual pick ups for a traditional funeral.  There were lots of pick ups for an organization that provides cremation services.  There were even a couple of people that donated their bodies to science – one had a rare condition that he and the family wanted studied further after his death and one or two others were for general donation.

No one (that I visited) requested any “green burials.”  I was a pretty big fan of Six Feet Under when it was on HBO (and still am – I consider the last several minutes of the series finale the best thing TV has ever aired) and they portrayed these green burials a couple of times toward the end of the series.  I am very interested in learning more about these types of burials so you can certainly expect a post or two about them in the future.

In my relatively short time doing death visits, one visit stands out from all the rest.  I arrived in the late evening to the patient’s home.  It was very unusual in that the only person there was the patient’s husband.  No other family at all.  My previous experience had been with patients who were surrounded by family members – either at the time they died, or certainly by the time I arrived to confirm.  But this time it was just one person, just him.   Since I didn’t have any other calls at the time I spent some time talking to him about his wife.

At one point he said, “Here, let me show you something” and turned on the light for the backyard.  I was a bit startled to see a casket out there – a plain pine casket.  No shiny polished dark wood trimmed with brass fittings.  Just a casket-shaped box.  Then he told me they’d already had a little mini-funeral for her while she was alive!  Everyone had written something and signed the box.  The plan was to cremate her in it, surrounded by loving words.

I thought that was so clever and so sweet.

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As I wanted to write in January, but WordPress not only wouldn’t publish my post, but ended up eating it too:

I started out in hospice as a visit nurse.  That means I was at home and waited for the triage nurse (who fields calls from patients/families/caregivers) to call me with information about going out to visit a patient for a problem.  Patients can be at home, in SNF’s, RCFE‘s, assisted living, etc.  I would be sent out for any number of situations including starting IV medications, changing med cassettes, admitting patients, managing symptoms and of course confirming deaths.

During this time, I also trained to be a triage nurse.  I’d make the looooooooong commute up the stairs and watch an inbox.  When calls come in, we mark them and then call the patient or family to help with whatever problem they are having.  We give advice based on the patient’s care plan and orders.  If we are unable to give advice over the phone about a situation, we send out a visit nurse to assess the pt and help out.

That’s more or less it in a nutshell.

As time went on, I decided I liked triage better.  Not being woken at 3am out of a sound sleep was a key component in this decision.  When I did sleep that is… sleeping while on call is not very good sleep!   I ended up quitting visit nursing and focused on triage nursing instead.

So that’s what I’ve been doing for the past 1 1/2 years.  As I said in the post before, I definitely have some things to write about my job, especially now that I’ve been doing it for awhile and feel pretty confident.

Also, I made a page for codeblog on Facebook – feel free to visit if you like :)


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In Praise of the Humble Hospital Bed

I’ve encountered some interesting beliefs in my time as a hospice nurse.  Before making visits or calls, we are expected to at least glance at a ‘basic information’ screen about the patient.  I’ve always been intrigued when I come across an entry that says some variation of, “Do not mention the word hospice in front of patient (and/or) family.”

I can respect this.  I’m more of a “let’s keep it real, yo” kind of person, but I know not everyone is.  So I do my best not to mention the word ‘hospice’ while providing care for these patients, and it’s never been a problem.

But there are some patients that are SO opposed to the entire concept (although they still come on service) that they also refuse any kind of equipment that we offer them to make their lives easier while they are being taken care of at home.

Hospitals have it all, right there – over bed tables (which are nice because they have wheels and can be a tall, easy moveable surface for anything from meals to setting up supplies for a dressing change), bedside commodes (gotta pee, can’t walk, oh!  there’s something we can put next to the bed!  Genius!), and hospital beds.  In fact, the fancy pants hospital beds we had at my job in CCU could translate phrases into like 15 different languages.  We’d just pick one from a list (“are you in pain,” “please hold still,” etc.), choose the language, and the bed would speak the phrase you wanted.  Needed to tell someone “I am your nurse” or ask them to wiggle their toes in Mandarin?  The bed would do that.  It would have been a really helpful feature, but patients often could not hear what the bed was saying.

Anyway, hospital beds, even those that can’t speak 15 languages, are pretty nice things to have when you’re sick.   So part of me was always dismayed when I’d go to a house to see a patient in distress only to find that they were still on the couch or in a regular bed.  Look, I get it.  Having a hospital bed in your house takes up a lot of room.  It basically screams, “Hi! I’m sick and/or dying!”  So for someone who can’t even tolerate hearing the word “hospice,” having such a huge reminder in the room can be distressing.

But when the chips are down and you can’t breathe and you don’t have the strength to sit up?  That bed can be a godsend.  The head can be raised or lowered, the bed itself can be raised so that your loved ones (and visiting nurse! ahem) don’t break their backs bending over to provide care (turning, cleaning, boosting).  The ability to raise the bed is actually pretty important for laypeople who aren’t used to using proper body mechanics when moving patients.  The bed rails can be really useful to use to help get yourself out of bed.

So when I come visit because the patient is having a hard time breathing, and I walk in to see them laying flat on a regular bed, I’m sad that their denial has progressed to causing them actual discomfort.  There’s nothing more I’d love to do than push a button and raise the head of the bed so they can breathe more easily.  There are wedges you can use on regular bed mattresses, and of course there are pillows you can jam behind the patient’s back, but those aren’t always very comfortable and it’s hard to get them in the right position.  Not to mention having to try to get them all back in position every time the patient needs to change position or get out of bed.

So if you find yourself or a loved one needing to be taken care of at home, and your nurse brings up maybe getting a hospital bed, don’t dismiss it immediately.  It can be a real asset for a sick person’s comfort and that of those taking care of them.


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Learning Curve

I’ve been doing hospice now for over 6 months.  As I did in CCU, I only work weekends and some holidays, so 6 months for someone like me doesn’t really equal 6 months for someone who does this full time.  I still struggle with remembering everything I need to remember, but I’m getting better.  There is more to remember than you’d think!

I’m realizing how much I depended on constantly being around other nurses to learn.  My hospice orientation included some different scenarios where I was able to watch my preceptor deal with what was happening, and I learned from that.  But it was still only the tip of the iceberg compared to what can really happen.

In the hospital, you’re usually surrounded by other nurses.  You’re at the desk with them talking about patient care, you’re at the bedside helping with patient care, you have several around at any given time to bounce problems off of and get advice.  I learned how to teach patients by watching other nurses teach patients.  I learned how best to say things (and how not to say things!) by watching other nurses talk to patients.  I learned how to titrate medications by watching other nurses.  You get the point.  Throughout my entire career, I was constantly watching other nurses so that I could be a better nurse.

Now I’m on my own.  If I’m really in a pickle I can call another nurse who’s on for advice, and I have done that once or twice with a good result.  But when you just can’t get that foley in, there is no one else to ask to try.  You just have to leave it out and hope someone on days can come do it, which can be 16 hours later.

I went to a house late one night to help symptom manage a patient that was having pain.  When I arrived, the patient was asleep but had to be woken up for some medications.  Despite having severe pain all day, apparently the pain was gone when she awoke.  But the patient was delusional.  Although she had no dementia, she didn’t recognize her husband of almost 20 years.  She kept asking about a cat that she needed to take care of, but the couple had no pets.  She was very very concerned about this cat.  Although she was not belligerent (as some confused people can be) and didn’t seem overly agitated about not recognizing anyone in the house with her, she was very insistent that we find this cat and make sure it was okay.

The husband and I did the best we could to reorient her, and she would look at us thoughtfully and then you could just see her mind reject what we were saying outright.  But again, there was no agitation, no real distress involved.  It was as if one part of her mind had no idea what was going on, but somewhere in there she knew she was safe regardless.  The husband kept asking me what we should do about this, but I had no real ideas.  We were already reorienting her, she wasn’t distressed, everyone was calm.  I asked him a few more questions (has she done this before, has she recently started any new medications, etc.) and could determine no cause for her behavior.  So I just said, “We’re already doing what we should be doing.”  I just wanted to give her a little more time after waking up to clear her head.

She asked her husband for some ID, he produced his license, and she questioned him further.  Finally it was decided that we would call her sister and talk to her about the cat and what was going on.  The husband dialed the number and brought the sister up to speed on what was happening, and I heard him say, “I think she’s having a psychotic break and the hospice nurse doesn’t know what to do about it!”

I wasn’t too offended by that statement and decided that from his point of view, I really hadn’t provided much in the way of advice.  To me, she was a patient who was disoriented and having delusions, and I’ve seen hundreds of patients in that state.  What did I do in those cases?  I medicated them.  Because usually they were agitated, pulling at things, obviously distressed.  This patient was not.  I just didn’t feel the need to call the MD right at that moment.  Even if the MD would have ordered something (Haldol I assume), it’s not like I could go to a med station and get it.  We’d have to figure out where the nearest 24 hour pharmacy was and have someone pick it up.  And if the patient had been even the tiniest bit distressed, I would have been all for that plan.

The sister decided to come over, the patient recognized her immediately and eventually become more reoriented.  She still wasn’t sure about the guy sitting at the table with us, but took her sister’s word that she did indeed know him very well.  She still asked about the cat, but her sister assured her that there was no cat.  I believe her behavior may have been caused by disease progression, but who knows.  By the time I left, she was fairly reoriented, in no pain, in no distress.

But the “she doesn’t know what to do” comment has really stuck in my head.  People always say that CCU nurses have “autonomy.”  And they do. But you really don’t know what autonomy feels like until you’re the only medical person there and everyone is looking at you for answers.


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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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  • 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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