Question for Hospice Nurses

I work in an ICU and in the last few months I've heard two nurses tell stories of patient's they've had who were DNR's. In each story they explained that as the patient was very close to the end they gave some cocktail to "make them comfortable". In each instance it was an incredibly high dose of pain meds and benzos combined. I recently had a patient who same thing was DNR and the bipap was basically the only things keeping her hanging on. The family wanted the bipap on so everyone could say goodbye because they knew once it was off it woudn't take long. One of the family members who I suspect had a medical background asked if I was going to give her some pain med/benzo cocktail after we took the bipap off to which I very nicely said no. Only because the patient had been practically comatose for hours it's not like she was moaning or gasping for air or doing anything that indicated discomfort she had been completely unresponsive for almost 24 hours so it seemed not indicated. I'm all for pain control, nobody should die in pain or discomfort when we have meds but I don't think everyone needs to be slammed with morphine and versed in their final minutes. Is doing this more common then I realize?

I think there are a couple of issues / problems and to be honest it would take some time to sort it all out with you. Perhaps I can share some of my thoughts based on the case you describe.

1. It is not uncommon for somebody on bipap or highflow and even intubated, to continue with those things until everybody can come and say good bye.

2. For a planned terminal extubation or withdrawing bipap/ highflow it is essential to have a plan in place that ensures comfort at that time. It is not a good idea to assume that because the patient "looked ok" or had not requires medication, that the patient will also be ok when taken off bipap/highflow etc.. Typically, the plan depends on what is going on medically, the symptoms, and the potential problems that can arise, as well as consideration for the family who might be at the bedside.

3. Just because you do not see any signs of discomfort does not mean the patient does not experience anything negative. The patient could be unable to convey signs of suffering as can be common with certain conditions - for example people with parkinson who are frozen in ...

So while you may assume that the patient does not need medication - are you really sure about it? You could also miss subtle signs or your own bias re those medications fools you into one direction and makes you "blind". Or your idea of comfort does not match the idea of a palliative care /hospice nurse or the family's idea. I actually have seen often times that my assessment of comfort reveals a conclusion that does not match what the primary nurse conveys.

A common idea is that we have to ensure there is no suffering and it can be hard to detect subtle signs when that person is actively dying - you have heard about "locked in syndrome" I assume - so think about it along those lines. The question is are you really 100% sure or do you just think you are sure. And is there a chance you could be wrong?

4. It is very established to go about withdrawal of care in a specific manner. First you make sure that the patient is comfortable in terms of breathing, pain, anxiety and so on - chances are there is something going on because otherwise - how did the patient end up at that point? The usual way of ensuring comfort at the end of life is to give narcotics for pain / SOB or to prevent it - preferably scheduled or continues, Ativan scheduled to prevent/treat anxiety, medication for congestion, tylenol sup for fever, and other meds based on condition. Prevention is key here. You do not want to wait until symptoms are bad. If you know there have been symptoms or they are very likely, prevention is the way to go. I am not talking about overdosing , I am talking about something like 0.5 ativan every 4 or 6 hours for example to prevent and treat anxiety/restlessness or small amounts of roxanol for pain/SOB.

5. Once you establish the patient is very comfortable and you are ready to withdraw care you stop bipap/highflow - usually we put a nasal canula in with few liters to transition. If the patient at that time becomes symptomatic meaning SOB, gasping, seizures and such we usually recommend to go back on highflow and bipap and to provide more medication and try again. Once ok on nasal canula with no stress /symptoms detectable, we continue to ensure that that patient will get medication scheduled and prn. I usually ask the physician to write for some medication that but also to have a prn order- for example if the patient was ok with roxanol I still would want an iv order for iv morphine to deal with acute symptoms that could happen.

6. What about the family? It is very important that the family has peace and can feel ok about withdrawal of care - after all they make the decision - and you do not want them to feel later on that the patient struggled/ bad death. People often feel already guilty and we do not want to add to that in any way. Communication is key - it is best to talk to the family about the plan and how the withdrawal of care will happen. If the family asks a question like "will you give this and that" the right thing to say is "please tell me more about that question" or "what are your concerns?". If the family feels that the patient should get some medication because they are afraid that the patient will suffer, it is very reasonable at the end of life / CMO when you withdraw care to give medication to prevent suffering.

7. You talk about "slamming" in the final minute - but I wonder if this is your perception based on your bias? If you were to look at medication as "prevention" (which it is) - how does that feel?

As a palliative nurse in a hospital I sit down with the nurses to discuss the plan to withdraw care to make sure there is a solid plan in place. The goal is really to treat and prevent and not to stop bipap and give meds after the fact.

I do not think that I will convince you to re-examine your ideas or biases if your baseline idea is "people get slammed" or if you never question yourself. Asking "why" is one of the most important things in nursing. "Why" is the family asking you? What is the underlying problem/emotion/ reason? Are you able to separate your own bias/opinion/ ideas from the needs of the family/patient?

Every case is different and I am just writing about some general ideas.

"Is doing this more common then I realize?" is a good question but also ask why would that be common if your coworkers adhere to the practice? Perhaps they are looking at it from the perspective of prevention and ensuring comfort for the patient and family and also want peace of mind knowing that we might not be able to detect 100% discomfort.

I am glad you posted about it because it is an important topic.

Nutella,

Thanks for your thought provoking reply I appreciate your detailed answer. In hindsight I think I should have given meds and next time I will. I guess I didn't think about it in terms of prevention, I work acute care where my brain is so programmed to evidence based practice mode of 'do something for a reason' and 'don't do something for a reason'. Always have a reason for acting or not acting. But it's easy to forget that prevention is a relevant reason to do something. When my coworkers mentioned their experiences it was such insanely high doses that I was confused and surprised. You mentioned something

I do not think that I will convince you to re-examine your ideas or biases .

Anytime I ask for someone's advice or opinion I"m basically questioning my biases/opinions and if someone can convince me that I'm wrong it will definitely change my opinion. Your reply convinced me that I should have given meds. Hindsight's 20/20 next time I will, fortunately the patient did seem to have a peaceful passing.

Nutella,

Thanks for your thought provoking reply I appreciate your detailed answer. In hindsight I think I should have given meds and next time I will. I guess I didn't think about it in terms of prevention, I work acute care where my brain is so programmed to evidence based practice mode of 'do something for a reason' and 'don't do something for a reason'. Always have a reason for acting or not acting. But it's easy to forget that prevention is a relevant reason to do something. When my coworkers mentioned their experiences it was such insanely high doses that I was confused and surprised. You mentioned something

Anytime I ask for someone's advice or opinion I"m basically questioning my biases/opinions and if someone can convince me that I'm wrong it will definitely change my opinion. Your reply convinced me that I should have given meds. Hindsight's 20/20 next time I will, fortunately the patient did seem to have a peaceful passing.

Hi - I am glad that you found it helpful!

I want to point out that end-of-life care is difficult in the acute care setting. There are studies and reports that go into detail about it. The main reason is that nurses and providers are really geared towards treating and are concerned about "side effects".

But the mission becomes a different one when we look into just comfort. It is very hard for most nurses and providers to shift from "acute care" to "end of life care". This is something we are not taught and which we do not lean easily. I dedicate a certain amount of my time to teaching this in the hospital.

I am happy to read that you were able to reflect. This is what it is all about - looking at it from a different angle and examine the situation a little bit more. Unfortunately, a lot of times people just want to vent and not really look into the situation.

I am also glad to hear that the patient passed peaceful.

If the patients prognosis is most likely death once the bipap is removed and the idea of giving the pt some pain medicine prior to removal to ensure they don't have difficulties or suffer any discomfort why not. It also gives families peace of mind at a very difficult time. They know they are losing a loved one. Most family members will not be medical people and have not experienced this before. The patient is going to die either way, why not make it as pleasant as possible. If I'm dying I would definitely want to be medicated, why suffer when we have medications to keep us comfortable. And imagine if your not medicated and start to feel the gasping breathlessness, I wouldn't want to do that to someone I loved or someone I'm caring for.

Nutella,

What an amazing reply! Thank you for offering such wonderful advice and a different perspective for nurses to consider.