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.
Wow this situation sounds exactly like one I encountered a few weeks ago.
The patient had colon cancer with mets to brain, bone and liver. I came in to do dialysis and thought the family was acting strangly festive for having a family member who is so ill. While I was there a medical equipment company brought in a wheelchair that the family had ordered for him. They were like "yay, look Dad. Your wheelchair is here!" When I looked at the patient to my eye he is definitely circling the drain - thin with sagging skin, pale, not aware of his surroundings, calling out and talking incoherently. I've seen this over and over and it's always the way they look when death is imminent. There is no way this man is ever going to leave the hospital. He'll be lucky if he makes it another few weeks.
After quizzing them I realized they were in complete denial about his condition. It was a similar thing - he was just fine until around April when his back hurt, and when they did a colonoscopy they couldn't even get the scope past his tumor and they inserted a PEG tube right then and there. The family was saying "we should have never taken him to the hospital. He was just fine until the doctors got ahold of him."
This family needed hospice so badly, but they refused to stop treatment and so weren't elligible for hospice. When this guy goes it will hit them like a ton of bricks. I kept thinking how nice it would be if they would stop treatment and take him home to die. It would be so much better for them if they could say goodbye, say all the things they wanted to say one last time, share memories, kiss, hug, sing, pray or whatever they wanted to help ease the transition. They could hold him and comfort him and each other while he slips away peacefully. Instead when his heart stop they'll jam a trach tube down his throat and someone will jump on him to do chest compressions, breaking his ribs in the process, with the family standing around freaking out.
We have come a long way with dealing with death and dying, but some people just aren't ready. It's so very sad.
Very sad indeed. It's situations like this that point out why everyone should have an advanced directive or living will, depending on what your state honors - and do it before you need it, if possible. With such a document in place ahead of time, neither the family nor doctors can override the patients clearly stated wishes.
Very sad indeed. It's situations like this that point out why everyone should have an advanced directive or living will, depending on what your state honors - and do it before you need it, if possible. With such a document in place ahead of time, neither the family nor doctors can override the patients clearly stated wishes.
i know that an advanced directive has one's wishes in writing...
but when a competent, a&o pt states "no more", it is sinful (and i'm sure, illegal) when their wishes are ignored.
a nurse's note reflecting the conversation betw pt:nurse, would suffice in conveying pt's wants.
I love hospice. My parent is care of hospice right now. And they are WONDERFUL. I cannot imagine waiting until the last dog day to get them involved.
Once my parent was given the dx of unremoveable pancreatic cancer, she decided to start hospice immediately. They have been caring for her (and my family) for 7 months now. And I am so thankful. No chemo, no radiation which would only prolong the inevitible and add more appointments, illnesses, etc. We can be together as a family and focus on making the rest of her life here and her death the way she wants it. Right now I would say my mother is the epitome of good dying.
When she dies, there will be NO traumatic interventions, just family support and love.
I wish other people thought that this was the best way to do things, but our society doesn't. If someone figured out a way to attach a severed head to an electrical socket to lengthen a life, they would do it, and people would claim it a success.
Even now, people we know (but not close family or friends) cannot believe my mom has decided to do nothing, and that she should be "fighting for her life." And they have questioned ME as to why I don't persuade her to "do SOMETHING to beat this cancer."
I get angry on the inside, but I just smile and say politely, "You know, there is more than one way to beat cancer, and my mom has made the best choice."
Very sad indeed. It's situations like this that point out why everyone should have an advanced directive or living will, depending on what your state honors - and do it before you need it, if possible. With such a document in place ahead of time, neither the family nor doctors can override the patients clearly stated wishes.
I agree and I find it distressing. If this patient said they didn't want a vent and were clear in their wishes and the doctor agreeed why did the nurse even have to go back to the patient's family?! Why do they get to override the patient's wishes?!
I don't work hospice so I've never dealt with this but this situation is horrendous. Patient is dying and doesn't want more interventions. Doctor agrees but patient's family wants to schedule his death. It's disturbing they get their way. I'd have a social worker, the doctor, clergy, ethics committee on this one today. Enough it enough.
dying pts typically don't have the strength or motivation to fight for themselves.
doctors know this.
but there's nothing more draining than a fighting family member.
and doctors know this too.
that's why the doctor (in op's opening post) said to clear the dnr w/pt and family.
it's all too common.
i don't mind going to battle with the docs.
not everyone has a big mouth like me.
leslie
leslie
You are so right. And I really did fight this one, long and hard. I spent 3 hours talking with the patient, talking with family, calling doctors,involving management, but in the end if the doctor will not support me it is my license on the line, which unfortunately is my livelihood. I really need my nursing license. I was so frank and direct with this family, I really thought we were informing them as a formality. I was blown away when they "refused". I made them cry, I was very blunt and even a bit harsh towards the end because I was so frustrated at the situation and what they were asking me to do.
Its nights like these that make me feel so helpless. I am moving in a month and I think I am going to try to find a job in hospice. I really dont think I can keep dealing with these situations anymore. ICU nursing has become ignore the patients needs/wants because he is dying and cant sue us but the family can so we will do what they want.
I actually got called off tonight, but when I go in tomorrow night I will post an update.
I had decided that the moment the patient requested his BIPAP off again, I was taking it off because to do anything else would have been assault. And if he got into distress I was dragging that family and the docs up in the middle of night, and THEY could have him tubed. It just so happened that he did fine and thanks to the precedex had no further complaints that night.
But lately stuff like this has REALLY been getting to me, I am glad to have off tonight. Thanks for all the comments and some support.
Natkat, BSN, MSN, RN
872 Posts
Wow this situation sounds exactly like one I encountered a few weeks ago.
The patient had colon cancer with mets to brain, bone and liver. I came in to do dialysis and thought the family was acting strangly festive for having a family member who is so ill. While I was there a medical equipment company brought in a wheelchair that the family had ordered for him. They were like "yay, look Dad. Your wheelchair is here!" When I looked at the patient to my eye he is definitely circling the drain - thin with sagging skin, pale, not aware of his surroundings, calling out and talking incoherently. I've seen this over and over and it's always the way they look when death is imminent. There is no way this man is ever going to leave the hospital. He'll be lucky if he makes it another few weeks.
After quizzing them I realized they were in complete denial about his condition. It was a similar thing - he was just fine until around April when his back hurt, and when they did a colonoscopy they couldn't even get the scope past his tumor and they inserted a PEG tube right then and there. The family was saying "we should have never taken him to the hospital. He was just fine until the doctors got ahold of him."
This family needed hospice so badly, but they refused to stop treatment and so weren't elligible for hospice. When this guy goes it will hit them like a ton of bricks. I kept thinking how nice it would be if they would stop treatment and take him home to die. It would be so much better for them if they could say goodbye, say all the things they wanted to say one last time, share memories, kiss, hug, sing, pray or whatever they wanted to help ease the transition. They could hold him and comfort him and each other while he slips away peacefully. Instead when his heart stop they'll jam a trach tube down his throat and someone will jump on him to do chest compressions, breaking his ribs in the process, with the family standing around freaking out.
We have come a long way with dealing with death and dying, but some people just aren't ready. It's so very sad.