It seems like lately I have been running into end of life issues every time I walk into the ICU that I work in lately. Here is my latest dilemma:
I get report on 81 year old pt with aggressive lung cancer post right middle and lower lobectomy 6 months ago, cancer has since spread to other lung. There are other co-morbidities and the patient is very sick. Has been in our ICU for one month on the edge of death, intubated and extubated 3 times I believe. NOw he is extubated x 2 days on BIPAP and VERY anxious, this pt is on the call light literally non stop. He called 6 times during report. I am told that family is very much in denial and refusing hospice and palliative care. They say that 5 months ago he was out on his tractor baling hay and if we can just fix all these little problems one by one, he can be back on that tractor in no time.
OK so I walk into pt's room and he is breathing 42 times a minute with eyes bulging out, ekg has been in a very wide crappy brady for days now, also kidneys are shutting down and there is bad 3rd spacing. He is on Precedex at .1mcg/min. He tells me he wants the bipap off. Respiratory is in the room and looks very anxious about this, his CO2 was 90 this am she tells me. I take it all in, and proceed to have a very frank conversation with the patient and tell him if we take off the BIPAP he will probably get into further distress and the way orders are right now I will have to intubate him and we probably will not be able to get him off the vent this time, and did he want to die on the ventilator? Or did he want "regular" O2 mask and we could give him alot of medicine for pain/anxiety and every comfort/dignity measure possible? Pt, who is very alert and oriented, states clearly to me and RT that he did not want to be put back on the vent or any other heroic measures. Great I tell him, I will call your doctor. Then I turn precedex up to .4 mcg to help him calm down and call his doc, who is very for a DNR order and tells me to write it if its ok with him and his family. So I talk to his daughter who is very quiet when I explain what is going on and she says she is on her way in with his wife. They arrive and I encourage them to go talk with the patient about his wishes and tell them after they talk, I want to call back the doc and officially put the pt's wishes on the chart.
Well long story short, family balks, refuses to talk with the patient about what he wishes, tells me they just cant talk to him about dying and what he wants because they cant bear it. Which I know is very hard. But here is the kicker: They ask me if I can just force the BIPAP on him for a couple more days so they can get some affairs in order and wait until other people are off of work and they can get things organized. The daughter told me that with today's modern technology they felt like they could plan his death and tonight just wasnt a good time. I was very blunt, and I told them (nicely because I am honest but I am sympathetic) that we will do what we can but at a certain point keeping BIPAP on against someone's will becomes assault. And I told them that putting him on o2 instead on intubating him if he declines is not making a decision to kill him(the cancer is doing that), but just respecting his wishes and making him comfortable as the vent will not cure him, also that he will not necessarily die as soon as they decide not to intubate, he could live for days or even weeks. They said they know all this. I said if you want him to stay a full code tonight, you want me to place an ET tube down his throat, even though that IS NOT what the pt wants. They wont look me in the eye, and they are crying at this point, and they tell me yes thats what they want. I said OK. They left and I called the doc and he said do what the family wants.
NOw its me who couldnt look the pt in the eye. With the precedex turned up, he rested comfortably with the bipap, so I just left it going all night. It made him very drowsy, but I figured his comfort was key at this point and I didn't want him wide awake and anxious. When I go back to work tomorrow night I will find out what happened to him, I hope his family managed to "schedule" a time to respect his wishes.
How come the family can override the patient here?! The man seemed very clear in what he wanted and his doctor seemed okay with it as well. Keeping someone alive because it doesn't fit their schedule is absurd.
Can you call in a social worker or clergy?! I would ASAP because this man clearly doesn't want a vent and it's time for him to die in peace. Perhaps sitting down with them along with the doctor and a social worker and whoever else you need to bring in is in order here immediately. Is there an ethics committee at your hospital?! Perhaps they can help too.
This BOILS my blood.
Its my understanding that the doctors have discussed his poor prognosis with the family at length and they adamantly have been refusing hospice consults and one for palliative care. There is an ethics committee, but I have been through it with them before and its a long drawn out process. This man doesn't have that kind of time, he is dying very soon with or without his family's consent. Personally I think the doctors need to step up and tell the family its not about what they want anymore. As long as doctors bow down to these families we as nurses have little authority.
Its my understanding that the doctors have discussed his poor prognosis with the family at length and they adamantly have been refusing hospice consults and one for palliative care. There is an ethics committee, but I have been through it with them before and its a long drawn out process. This man doesn't have that kind of time, he is dying very soon with or without his family's consent. Personally I think the doctors need to step up and tell the family its not about what they want anymore. As long as doctors bow down to these families we as nurses have little authority.
I will pray he goes to sleep tonight and just dies in peace to put an end to this man's suffering. He's lucky to have you in his corner and trying. More than anyone else is doing.
This really is shameful. The patient's wishes should be what is most important here especially as he is actively dying. The family should be even more ashamed because this is all about them scheduling his death. Wouldn't want his death to be an inconvenience for them.
I had a pt who broke my heart. She had a DNR sheet, a living will stating no PEG, no vent, no CPR, had it notarized and everything. Well, all the family bought into it except one daughter. So when mom was found down at home, it's that daughter who brings mom in, tells everyone mom's a full code. She gets coded once in ER, 3 more times in ICU, gets a PEG, broken ribs from the repeated codes, hypoxic brain injury from being down so long at home. Now legal says "we established a pattern of care" by doing the 4 codes, the doc won't address it, and I spend 2 days pouring jevity down this woman's peg, and then watching her body not absorb it. I finally called the doc and said, "we need to stop the feeding, she's got greater than 100 cc residual the last 4 times I've tried to do a feeding, bowel sounds are diminishing, feet and legs are getting cold. The woman is dying. Can we PLEASE address her code status?" The doc tells me, "the family won't discuss it."
Well, sure enough the poor thing did code again, did end up back in ICU, and finally passed. I have always felt like I had a hand torturing that woman, and that it will be one of the things I have to answer for at the end of my life.
This case is exactly why not only should people have a living will, but also a MEDICAL POWER OF ATTORNEY! And the MPOA should be a person who is WILLING and CAPABLE of standing up for the pt (even if it is against the family) to do what is best.
I have also seen MPOA balk at the end and not follow pt wishes, esp if they are family members, so sadly it isn't a save-all.
What really needed to happen in this case is for the MD to get some guts, come in and talk to this family. It is so sad that his decision was probably based on a possible lawsuit rather than what iwas best.
ICU nurse, I firmly believe you absolutely did what was best and all you could in this situation. It is too bad that the doc and famliy weren't able to do what was best too.
Well, sure enough the poor thing did code again, did end up back in ICU, and finally passed. I have always felt like I had a hand torturing that woman, and that it will be one of the things I have to answer for at the end of my life.
i think it's important for us to remember, that we do have choices.
when there are situations that go against our moral grain, we can refuse to care for these pts.
no, we can't walk off in the middle of our shift but we can make it known that unless the situation changes, e.g. becomes comfort care, dnr, we refuse to take any further assignments.
i've even known doctors who have refused to care for pts when family objections became so nonsensical, unrealistic and cruel!!!
bottom line:
i would never want to go to my grave, worrying that i'll have to answer for myself.
if it pains me that much to do it, i'll pass.
ultimately, it really does make a difference when we remain true to ourselves.
a lot less regrets, come the end of our lives. (can you tell i'm a hospice nurse?:chuckle)
earle58, we tried something like that last year when we had a kid that it was clear to everyone was dying (well, actually he should have died several years ago, but we managed to "save" him) and his parents wouldn't hear it. They kept coming up with new things they wanted us to try so that their little precious would keep breathing. Half way through his stay he started telling them he hated them and he wished they'd go away. But the parents were very good at getting what they wanted so we tortured this poor little soul for months at their request. Several of us stood up and said we couldn't do it anymore, and our management said we had no choice, everybody had to take their turn. One team leader went so far as to draw up a roster of nurses for him that was weeks in advance, blocks of several shifts in a row. For continuity, which doesn't seem to matter unless we have cases like this one. So that led to half a dozen really good nurses quitting. And now we have another one who is heading the same way. These parents are not quite as blatant in their attempts to run the show, more passive aggressive, if anything.
I think these end-of-life situations are much tougher in peds, because even when the kids are old enough and mature enough to make choices, we have to ignore them and defer to their parents. And parents don't always look at what's best for the child, but what they want for themselves as it relates to the child.
You stated the patient was "very alert and oriented", therefore, what was the issue? I understand that family wanted him intubated, but the patient stated "no". Therefore, intubating the patient would be no different than forcing the c-pap on him.
I'm glad you didn't intubate him, however, I wish someone had told the family, "I'm sorry, your husband clearly stated his wishes and we must follow them."
It is so hard when we know our patients and connect with them only to have the family seem to be holding on selfishly to a loved one ready to die. I think most patients recognize being ready for death long before family members are ready for them to leave.
Please don't hold onto this experience in your heart. Do you have a chain of command that you can talk to? Someone else? Another nurse that you share experiences with?
Keep this experience in your head with the great responses you have gotten here.
There are many cultures that feel that everything possible must be done to prolong life. While I hate to see it personally, I do understand the feelings. I have seen a woman with advanced dementia suffer a full, long code because her family did not want to let go.
On the other hand my mother coded after receiving tx for advanced cancer and she wanted to live long enough to say goodbye to me and her grandchildren. I am sure the nurses coding her thought it was crazy to code this emaciated, dying woman. Fortunately my sister understood and stood her ground not to DNR her until I got there. She had me call the MD to explain the situation. The MD accepted the decision but perhaps he would not have shared that call with all staff.
My heart goes out to you. You obviously are a good nurse and good advocate. Don't forget that.:redbeathe
When I came to work tonight they actually have him on a vent now. He i still alive. Apparently after I left the son came in and convinced dad that he needed to not give up and have everything done. At least he looks peaceful on the vent. But I have a feeling he isnt ever getting off.
icyounurse, BSN, RN
385 Posts
Its my understanding that the doctors have discussed his poor prognosis with the family at length and they adamantly have been refusing hospice consults and one for palliative care. There is an ethics committee, but I have been through it with them before and its a long drawn out process. This man doesn't have that kind of time, he is dying very soon with or without his family's consent. Personally I think the doctors need to step up and tell the family its not about what they want anymore. As long as doctors bow down to these families we as nurses have little authority.