Probably one of the most challenging things you will have to do is talk about death. It can be hard to gauge how receptive people will be to the conversation. Some are willing to dive right in while others are more hesitant, or will just flat our refuse. It isn’t unheard of for people to come onto hospice without even knowing this means they are expected to die within 6 months or possible sooner and you could actually be the person breaking that news to them.

I have always found that starting with open-ended questions is the best way to approach:

·        What did your doctor tell you about your disease? Your prognosis?

·        What do you know about hospice?

·        How do you like to receive information? Straight forward? In tiny bits?

If they are not okay having a discussion now, let them know you are available when they are ready.

I have found that the single most important thing you can do to manage time is point-of-care charting. If you’re like I used to be, you write your notes by hand with the intent to transcribe them into the computer after you get home. But once you get home, life happens. dinner needs to be cooked. The pets and/or kids need taking care of and documentation gets pushed out later and later. Then you find yourself sitting down at 10 pm finishing your charting. This sucks in so many ways.

• Double documentation .. total time waster!

• You may have only worked 8 hours total but it feels like 14.

• Documentation saved for later is less accurate.

• Anyone caring for the patient between the time you saw them and when you finally get your notes in, won’t have an accurate picture of what was going on with them.

I’ve heard some nurses complain that point of care charting is prohibitive to therapeutic care because it puts the computer between you and the patient. I can’t think of any time recently when I went to a doctor appointment and there wasn’t a computer in the room. People are used to electronic charting so it shouldn’t be a surprsie to them when you do it.

The main keys are communicating why you are doing it, “I want to make sure I accurately capture everything that is going on so everyone on the team will know what we talked about”—and knowing when to set it aside.

Also, giving yourself grace. It takes a little bit of time to get the hang of it. Start with just opening the computer in your visit to do your med reconcilliation (which PS you should be doing anyway!).

There are going to be times when it just feels impossible to chart at the bedside … shit happens when someone is dying! But I guarantee if you can try to get the majority of your documentation done in most of your visits, your life will change!

As much as people don’t like talking about death, you will often get the question, “how long?” Since you probaby don’t have a crystal ball in your car stock, what is the best answer? The truth, followed by your best guess, which goes something like this:

“We don’t really know for sure, death is unpredictable. I can give you my best guess but I will give you the worst case scenario. That way if I wrong it’s a gift and if I’m right your prepared.”

I like to use timeframes that are fairly broad vs trying to give them “a day or two”.

Weeks to months, days to weeks, hours to days, minutes to hours.

The closer the person gets to death, the more accurate my predictions have been. For me, the telltale sign is when they start thrusting their tongue forward with breaths. That’s usually in the last minutes of life.

Don’t use them. Dead, dying, died, it is what it is. Enough said.

Okay, okay I’ll give you a little more. People are obviously emotional when their person is dying so being very clear about what is happening is important. Especially if it’s someone who lives far away and your communicating by phone.

The expectation for our patients is death, so it shouldn’t be a surprise when you tell them they’ve died.

If you’re pronouncing with the family in the room, I think it’s fine to give them a little nod and a “he/she’s gone” because again, they’re already aware that is most likely what happened.

But avoid things like “he’s passed on” or “she went to heaven” (I know of doctor who said this once and the family who wasn’t religious was like WTF??)

Vital signs on hospice patients are really only useful when they’re used to help determine eligibility. When it comes to assessment, it’s more important to pay attention to the person, not the numbers. Ask yourself, what will I do with the information? If the answer is nothing, you probably don’t really bother the patient to get them. Some people find having their BP checked uncomfortable and what if they have high blood pressure, are you going to call the doctor for to get an order for anti-hypertensives? probably not. Conversely though, if they are on BP meds, you might want to check it occasionally to see if it’s time to stop them.

If the patient is short of breath but their sats are 95%, will you withhold the morphine? NO! If they’re O2 sats are low, will you be giving them medication or starting oxygen if they aren’t short of breath? Also, no.

And speaking of oxygen …

I worked with a nurse once who said the US is the only country in the world who puts oxygen on dying people. I have googled to see if there are stats on this and haven’t found any but anecdotally, I believe that could be true. As an IPU hospice nurse I had many a patient arrive from the hospital with oxygen on and no history of respiratory disease.

We use oxygen for comfort in hospice. If it makes a patient more comfortable then by all means, let them have it. But not everyone finds it comfortable. I’ve had more than one family member tell me they were fighting with their person because they kept pulling off the oxygen.

Remember, morphine is the gold standard for treating shortness of breath. If they don’t want to use oxygen, don’t make them!

Ugh. The worst part about the dying process. Yes, we have anticholinergics to try to dry them out, atropine, scopolamine, glycopyrrolate, I’ve administered them all. But let’s be honest, they don’t work for shit. Well, they do work for drying out the mouth and thickening the secretions but that’s about all.

In my experience (and that of many of my colleagues) education and repositioning are the best methods to reduce the noise.

Education: We swallow our saliva all day long without even being aware of it. But when a dying person loses their ability to swallow, the saliva builds up in the airway and as they breathe the air moving over it makes that noise. They aren’t aware or bothered by it and they aren’t going to drown.

Repositioning: My trick is head of bed up, put them on their side. Either side, doesn’t matter. I have found this to work like a charm almost everytime.

Fun fact about the death rattle, it’s highly predictive of death. Most people will die within 48 hours of onset.

For God’s sake DON’T LET YOUR PATIENT GET CONSTIPATED!

My nurse kryptonite is poop … absolutely hate it so that alone was a great motivator for me to keep them going on their own.

Seriously. As an IPU nurse I had so many patients I had to disimpact and they rarely came in for constipation. They were there for terminal agitation but all they needed was a poop.

Here are some important poop facts to keep in mind:

• People make waste even if they aren’t eating.

• If a caregiver tells you their person is all good now because after several days of not pooping, they just had diarrhea .. RED FLAG! They might be leaking around an impaction.

• Every person who is on opioids needs to be on a bowel protocol even if they are actively dying because we don’t know how long they will take to make their exit. A suppository every three days should suffice.

Should you get certified? I’m all for certification. It shows a level of commitment and excellence to your chosen field of hospice. Also, you will learn a lot when you study for the exam. For instance, lemon glycerin swabs are contraindicated for hospice patients. Did you know that? I did .. because I had to study for my certification and that was a question on the test! By the way the why is that they’re too drying for our dehydrating patients.

If you really love being a hospice nurse like I do, you have a better chance of not getting burned out. That’s definitely not to say it never happens, but you will find that the passion for the work overrides most issues you will face that can cause burnout.

That being said, hospice nursing isn’t for everyone and no matter how compelled you feel to be a hospice nurse, it still might not be a good fit.. I tried out the ER once and found myself crying after every shift (mostly because the nurses were the kind that “eat their young”. Once it became apparent to me that I was just not cut out for that type of nursing, I moved on.

So if hospice isn’t for you, don’t beat yourself up. There are many other types of nursing and you just need to find what’s right for you.

But I want to give you some tips to try to avoid burnout before you decide it’s not going to work for you.

SELF CARE, SELF CARE, SELF CARE! Did I yell that out enough? Self care might be getting your nails done or buying something nice for your self. But I found that usually didn’t last long enough to override the emotional stress I was trying to manage. Try instead to find what fills your soul.

• Walks in nature

• Game time with family

• Crafting and creating things

• Gardening (that was and is mine)

• Listen to your body and your brain. If you feel yourself losing your shit .. take some time off. I am a firm believer that mental health days are as important as regular sick days.

Find your joy and do it as often as you can!

Keeping boundaries.
You should know your agency’s professional boundaries policy and stick to that. But also set your own

• Don’t work too much overtime, it’s okay to say no when asked. (if you end up working OT, report those hours so you are paid for them!)

• Turn your work phone OFF when your shift ends. This is not only important for you, it’s important for your patients to understand that the other team members are competent and able to help when needed.

• Do NOT let yourself get sucked into drama. Whatever dysfunction is happening has been there long before you came into the picture. Don’t let patients or family manipulate you into getting involved. Call on your team to have a family care conference if things are so unmanageable it’s affecting the patient’s care.

Set emotional boundaries

A personal choice that I made but I highly recommend is not to make a habit of going to funerals. In face, do it rarely if ever. One of the ways I always determined if I was going to be crossing a boundary was to ask myself if what I was going to do is something I would do for all of my patients. If the answer is going to be usually no, that might be a boundary issue. I did not want to feel obligated to go to every patient’s funeral because if I did, that would use up all my free time doing work related activities. Of course you can make an exception if you feel very strongly about it. I went to two funerals in 20 years. One was a patient I did continuous care for a palliative sedation situation. The other was my husband’s great aunt who died in the hospice care center I worked in.

Keep in mind that no matter how much you grow to love your patient and/or their family (and there will be many that you feel that way about), these are not your family. You are there to do a job and if you get too emotionally invested that may negative impact your ability to provide care. On that note let’s discuss crying at the bedside. It is okay to shed a tear or two. Families often appreciate that their person touched your heart in that way. But don’t be a blubbering fool. Not everyone cries when they grieve and if you are sobbing your brains out while the family is stone faced, it could be uncomfortable for them.

Request a team change
for your patient that is. if you have an especially difficult situation you have tried to work through, maybe you’re not the right nurse for them. Often the feeling is mutual. I was so upset the first time a family fired me. I had bent over backwards trying to make them happy and then they had the nerve to fire me!? After I sat with that for about 3 minutes. I realized I was so happy to not have to deal with them anymore!

Lean on your team
Your social worker and/or chaplain can be a great resource to provide counseling or even just be a sounding board to debrief with after an especially difficult day. Use them!

Team work is dream work
Speaking of your team. Remember that hospice follows the interdisciplinary model. If you are the case manager, yes, you are the leader of the pack. But that doesn’t make anyone else less important. Communication is key. Stayin in close contact with all members to collaborate will make the hospice experience better for you, them, your patients and their families.