is everyone who is dying in pain? wondering if i did the right thing,

[jrowmom]

Hi everyone. I have a question about a situation that pops into my mind occasionally. I had only been a nurse for about 2 years in med surg. At the first hospital I worked at we sometimes had hospice patients but not often. I learned that they are there to keep them comfortable etc...Ok, well I moved and got a job as agency on a neuro floor where there were never hospice patients. Well, we had a patient, a young man who was dying of AIDS. He wasn't "in hospice". His Doctor didn't seem too sympathetic to me by the way (the family was not educated, charity, two girlfriend that came to visit, family drama etc, you get the picture).

But he was essentially there to die. His liver was beginning to fail. The doctor made it clear that there was nothing they could do. Though he didn't have a regular regimen to make him comfortable, he did have some ativan or xanax ordered. I don't remember exactly which one. Nothing for pain though. And noone ever gave him the anxiety med. And of course he was not "there" and didn't talk or ever ask for anything.

Well when I had him as a patient, I asked the doctor if we should give him something for pain to make him more comfortable because I was thinking about the hospice patients I had at the other hospital. To me, he seemed uncomfortable and agitated. Though he was moaning or acting like it was pain exactly and the doctor said "why, is he in pain" and I explained what I thought. He didn't order anything. But to me, he is dying. I mean really close I think. Wouldn't you think he would be in pain? I mean, serious question, do you all think if you are dying that you are in pain? I would think so.

Anyway, I had him a couple of days later and no nurses ever gave him anything and again to me he seemed agitated and uncomfortable but not moaning or writhing or anything. I think because maybe they were scared because of his liver. The mother and family were of course upset and said can't you give him something, so they thought he was uncomfortable, and they know him better than me of course. So I gave him the dose of xanax or the ativan that was ordered. (I don't really remember which one, it was a long time ago and I haven't been working for over a year). Well guess what? That night he died.

Well the next day the nurses, remember I was new at this hospital and we all know how nurses can be to one another, and one nurse insinuated that he died because of what I gave him and said something like well duh the medication is excreted through the liver mostly not the kidneys like I was stupid for giving that to him (like she looked it up and was looking for something, and remember his liver was failing). No one ever said anything outright though, but I am thinking "well good, he is not suffering anymore and everyone was waiting for him to die and were relieved." The med did make him seem less agitated the day I had him. I truly feel like I did the right thing but it often pops into my mind but...

I guess the question I mostly want answered is, do you all think that if someone is dying that they are automatically uncomfortable and in pain even if it doesn't seem blatantly obvious. I mean doesn't it hurt when a persons organs are failing? I really don't know but would think so. Did I do the right thing?

[HeartsOpenWide, RN]

I don't think that just because a person is dying that they are automatically uncomfortable. I do believe that a patient does not have to be "wryting in pain" to be in pain...this patient was dying from a failed liver...um yeah ouch. Advocate for your patient.

[leslie :-D]

regardless if it is painful or not, dying in of itself, commands comfort care.

it is 100% cruelty to not intervene.

whether the pain is physiological, emotional, or psychological...

all would be helped by a narcotic and anxiolytic.

and while multi-system failure may or may not be acutely painful, it is indeed, uncomfortable.

with hepatic or renal deterioration, you contend w/the body retaining metabolites and toxins.

with cardiopulmonary deterioration, you contend with breathing and circulatory collapse.

we feel our best when everything is in homeostatic balance (mind, body, spirit).

conversely and logic would dictate, that we feel our worst when all systems are failing.

who in their right minds, WOULDN'T give morphine for that!!

yes op, your instincts served you well, as they did your pt.

thank you.

how do these idiots attain their licenses???

leslie

[rngolfer53]

how do these idiots attain their licenses???

leslie

Good question!

Nursing programs and instructors spend lots of time on opioids and Pt safety, and rightly so. They fail, from what I've seen, to make much mention of the role of opioids, or much else for that matter, in palliative care.

I don't recall a single NCLEX question that related to comfort care when I took it in 2007.

Perhaps we should start a little movement to contact our nursing alma maters to assess what they teach re: hospice and palliative care, and perhaps offer to help if there's a deficiency. Even if we did nothing but give links to Hospice Fast Facts, that would provide more than I think many nursing students get.

[stacey4374]

There are scales to use for those pts that can not verbalize pain. I use the FLACC scale. Agitation and restlessness can be an indication of pain/discomfort.

I believe more education to residents and nursing students is necessary in regards to comfort/palliative care.

We must remember to always advocate for our patients. If we won't who will?

[tewdles, RN]

Bottom line....you did the right thing. There is a tool called the PAINAD, you can use it to determine the pain level of the nonverbal adult patient. You can google it. From the symptoms you describe it would be difficult at this time to determine if your patient was suffering simply from terminal restlessness or from pain or from a combination, regardless, you used the medications that you had at your disposal to make him as comfortable as you could. It is unfortunate that you were in a minority in your concern for this young man. Good job.

[Werblessed]

As a hospice and palliative care nurse, I commend you for advocating for your patient and I do not think the medication you gave him hastened his death but likely helped him to pass more peacefully. The rule of thumb in hospice is "if a patient had pain before they became unresponsive, they will continue to have pain though they might not be able to exhibit it as clearly" so we continue the interventions for pain and symptom management until they appear comfortable (using non-verbal indicators to assess). The anti-anxiety medication was probably a good choice as it has a muscle relaxant component and people who are dying some times "twitch" which is normal during the dying process. Xanax and/or Ativan will help minimize that symptom. What I see sometimes is that when we address a patient's comfort (that appears to be minimally well managed or not managed at all), that once we finally get them to a more comfortable place, the 'letting go' journey is more easily processed. It is not that you hastened his death - by no means as people make this very intimate journey on their own terms - but that you helped to ease his suffering so that he did not pass away in distress but from a more peaceful and comfortable place within. As for the Physician who did not think it was necessary to ease the symptoms of a patient dying from AIDS related complications (liver disease, etc), one of the most important missions of Hospice is to educate our communities and caregivers. Please feel free to contact one of the larger Hospice Organizations in your town. Some of the larger entities will have their own inpatient care centers (think ICU level care for hospice patients). Many of our care centers encourage nurses from non-hospice settings to join us for a day to learn more about this very specialized care option.

On behalf of people everywhere who only have RNs to advocate for them at end-of-life, thank you.

[llg, PhD, RN]

While youo probably did the right thing for this particular patient ... the answer to one of your questions is "No, not all dying patients experience pain. It depends on what they are dying of. You have to assess the patient to know whether or not they are in pain."

My mother died of Pulmonary Fibrosis. She was not in pain -- and it drove her crazy in the last week or two of her to have the nurses ask her every 2 hours to rate her pain. She kept saying that she was not in pain and that she would tell them if she was -- but they had some standing rules at the time that all patients (or all on morphine, which she took to ease her breathing and help her hypoxia-induced anxiety) were assessed for pain every 2 hours. So, they bothered her every 2 hours to ask and she would explain to them that she had no pain, never did.

[Tallcalirn]

I fought desperately for a CADD pump for one of our comfort care patients...the majority of nurses didn't think the patient was in pain.....BECAUSE most of the nurses would ask "are you in pain" and never take the time to really "look" and "talk" to the patient...." The doctor wrote the order for the CADD ...and the patient was FINALLY comfortable and pain free.....She passed away last week, but I was comforted with the fact that she didn't die in pain...

[tewdles, RN]

While youo probably did the right thing for this particular patient ... the answer to one of your questions is "No, not all dying patients experience pain. It depends on what they are dying of. You have to assess the patient to know whether or not they are in pain."

My mother died of Pulmonary Fibrosis. She was not in pain -- and it drove her crazy in the last week or two of her to have the nurses ask her every 2 hours to rate her pain. She kept saying that she was not in pain and that she would tell them if she was -- but they had some standing rules at the time that all patients (or all on morphine, which she took to ease her breathing and help her hypoxia-induced anxiety) were assessed for pain every 2 hours. So, they bothered her every 2 hours to ask and she would explain to them that she had no pain, never did.

I am so glad your mother did not have pain. Additionally, it sounds like her dyspnea was well managed. It made me smile sadly to read that they assessed her pain (not on the POC most likely) Q2h rather than to assess her dyspnea (likely on the POC)...they even could have used a 0/10 scale.

I agree..."No, not all dying patients experience pain". However, the vast majority experience discomfort of some nature and in varying degrees, and it is our job to make it tolerable if at all possible.

[SuesquatchRN, BSN, RN]

On behalf of people everywhere who only have RNs to advocate for them at end-of-life, thank you.

And don't forget the LPNs. I put a patient on O2 via mask a week ago because he was dying. He was not, at that time, in any perceivable discomfort. The LPN who followed me got the order for morphine.

:)

[SuesquatchRN, BSN, RN]

Oh, and to the OP, you did not "kill him." He was dying. And while you probably did not hasten his death, even if you did, that's okay. Better sooner than later when there is no hope and one is in pain.