Difficult conversations in the ICU

[Ddestiny, BSN, RN]

I wanted to hear from my fellow critical care nurses about a common but difficult situation. I'd love to hear your advice and perspective.

My mind's been buzzing around some recent scenarios that I've been involved in at work, where I've been part of a team for various patients that have treatment/goal of care options that are ethically a bit grey. By that, I mean the patients where the families want everything done, when it's questionable what outcome the patient can realistically attain. The patients that are acute but stable; may not necessarily be on death's door, but cognitive functioning and independence are extremely limited. One, we were not sure we'd ever be able to live without ventilation support due to an insult to the brain stem. Unfortunately, the family was not hearing that, and insisted that the trach and peg were just a short-term measure before he bounces back.

I feel like, in these situations, my greatest struggle was in trying to meet the family where they are and find common ground so that they can understand that, though the conversations are hard, we aren't trying to be dismissive or tell them to let go of their loved one. Rather, we're trying to explain the treatment options and their consequences. Many families don't want to explore the consequences, which doesn't allow them to make informed decisions.

These conversations are hard and people's fear at learning that their loved one may not survive or return to a certain quality of life tends to go quickly from fear to anger, and I feel it creates distrust in the treatment team.

My personal belief is that if someone truly would want everything done no matter the potential for suffering, I can be okay with that and will suffer no psychological stress from it as long as I know that the decision was made with all of the information available. But I'm starting to find that is now more of an "ideal situation" since so many families of ICU patients are deep in their stages of grief that make it difficult to effectively connect and educate. Finding the "sweet spot" between making sure that the family understands the consequences of the different options (including the more uncomfortable options), and not just absolutely beating a dead horse and causing nothing but further distrust, can sometimes be complicated. If anything, it's like trying to hit a moving target. lol

Any stories or tips on how you go about having conversations with a patient's loved ones, when the situation is "stacked against you" and it feels like the family is resentful or dismissive of the information you present? Or even in those situations where family members do NOT get it (or maybe think that they get it, but are totally off base)? Do your doctors tend to be the one doing most of the talking or do you make a point of addressing these issues yourself?

[offlabel]

If we are so determined to make medical advances and in so doing demonstrate how capable and intelligent we are in our expertise in prolonging life, we had better be ready to accept the consequences of life prolonged that doesn't meet our quality standards. We offered the promise in the first place and it should come as no surprise that people took us up on it. If we now find ourselves wringing our hands because of the dilemmas we've caused, that's too bad for us.

[Ddestiny, BSN, RN]

If we are so determined to make medical advances and in so doing demonstrate how capable and intelligent we are in our expertise in prolonging life, we had better be ready to accept the consequences of life prolonged that doesn't meet our quality standards. We offered the promise in the first place and it should come as no surprise that people took us up on it. If we now find ourselves wringing our hands because of the dilemmas we've caused, that's too bad for us.

Well.... lol

I think I get your point. Unfortunately I'm not talking about how this great ethereal thing called "the medical field" is dealing with dilemmas... I'm talking about on a personal level -- one patient, one family, one medical team -- trying to make real life or death decisions. I'm not sure how to apply what you're saying in that situation. If you have specific thoughts on how we can educate families (because most literally know nothing about anything medical, nonetheless complicated disease processes, and their only frame of reference is Grey's Anatomy where everyone wakes up and skips out of the ER after their 2 minutes of CPR) then I'd love to hear them.

[Cowboyardee]

As a nurse, I feel as though giving a medical prognosis is beyond the scope of my practice, even when I know perfectly well how bad a patient's prognosis is. (I do occasionally cite statistics about the realistic effectiveness of CPR though, or offer very guarded opinions when repeatedly pressed for my own perspective). But I agree that families are often making important decisions without enough information and while under tremendous stress.

So I tend to rely on a few basic strategies that may help a bit.

- I am willing to harass the docs I work with to talk more with families when I feel that the families have not been adequately informed. This doesnt always make me popular with the docs, but I dont work for them.

- I express compassion for the people making hard decisions. Sometimes, they're more willing to let a dying loved one go if others acknowledge that its hard for them.

- I describe what we are currently doing for/to the patient in great detail. It's not always obvious to laypersons how sick their loved one is currently while in an ICU and how that's affecting them and how how uncomfortable many interventions are.

- I encourage families to make the decisions their loved one would make if they could decide for themself. Many people have an easier time letting their loved ones go if they believe its what they would have wanted.

Of course, there's many people you'll never get through to. That's life.

[neonn965]

If we are so determined to make medical advances and in so doing demonstrate how capable and intelligent we are in our expertise in prolonging life, we had better be ready to accept the consequences of life prolonged that doesn't meet our quality standards. We offered the promise in the first place and it should come as no surprise that people took us up on it. If we now find ourselves wringing our hands because of the dilemmas we've caused, that's too bad for us.

I don't think making medical advances means just throwing our hands up in the air and accepting that we have to sustain life in unethical ways. The goal of intensive care generally is to sustain life until the patient makes some sort of recovery into a meaningful life. This is the reason why ethics is a growing area of medicine. I have sustained life on babies who have been effectively dead with pressors and an airway for a very, very, very, very long time. The ability to do it doesn't make it right and it's okay to not just say "well, we can do this so we must".

[neonn965]

To answer your question OP, I typically don't present a whole lot of information regarding prognosis. If they want to pay me an MD salary I would certainly be willing to present that information. But I can tell you what I do with families when I know that their baby will die and they are not open to comfort care or anything but aggressive treatment. I will often ask an attending physician what they think about the family's level of understanding. I ask them what was told to the family, etc, so that I have a baseline to start from.

Then I will ask the family what they have been told and if they feel they understand the baby's very critical status. Generally that opens up the conversation in a non-threatening way. I usually say something along the lines of "this is your story, not mine, and my role is to support you in whatever you choose to do, and I will support the decisions that you make, but I need to know that you understand your options and your baby's condition". Something like that so that they know that I am there to aggressively treat and sustain their baby's life until they change their minds or the baby passes. I really do support their decision and feel that I can do those things ethically as long as the parents really GET IT. I will sometimes remind them that at any point they can change their minds about treatment options and that at any time they can decide to hold their baby/pursue palliative options/withdraw care, etc. I usually say something like "I only am explaining this to you because as your nurse it is my responsibility to make sure you understand all of your options at this point, and I totally understand your choice to continue with aggressive treatment".

These are the types of conversations I have with families AFTER they have had them with the physicians/palliative care etc. My role in my eyes is to reinforce these conversations, make sure they understand the baby's condition, make sure they understand options, make sure they understand they can change their mind, and make sure they know that ultimately I support their choice and am there to support them in a very difficult time.

ETA: I don't have these conversations every single time I care for a baby like this. If the baby is maintaining their status and the family is well aware of their condition, I don't just randomly bring this kind of thing up. It's usually when I feel like we're reaching a point where it becomes relevant again. Say we get a crappy gas, or we have to start an epi drip, or something changes in some way, or I take over when the baby is having a particularly crappy day. That's when I'll kind of sit the family down towards the beginning of my shift and just say hey, I know this is a tough conversation and I just want to get it out of the way and make sure we're on the same page. Usually people are really responsive and very appreciative of this approach.

[neonn965]

Last thing, if I really feel a family doesn't get it, I don't try to make them get it. I go back to the team and say hey guys, this family does not understand and I really think you need to sit down and talk to them. Either they will be surprised by that and have another conversation with the family, or they will tell me they have talked to them at length and they just don't think the family is ready to accept it. I feel like it's really not my job to spell out poor prognosis for a family like that. Only to assess for understanding and reinforce if that makes sense. But yeah, if they don't get it, I involve the docs/NPs and pass the baton.

[LovingLife123]

People often need time to process the loss. We often trach and PEG even when it's not in the patient's best prognosis. It can often take a family a long period of time to come to grips. Especially in a trauma. Remember, these people were fine yesterday. Completely normal. Then, a tragic event happens. Lives changed in an instant.

All you can do is make sure there is effective communication between the docs and family.

These families haven't seen what we see. This is a whole new world to them. We can't force decisions on them.

Now, when we are compressing 90 year old mee maw who's had a massive head bleed from her fall, that's another story. I may be a little more insistent that all communication is exhausted with the family. But, I find most families are reasonable in that instance. I've come across a couple that aren't.

But, I've seen some amazing recoveries. I don't rule too many people out.

[JBMmom, MSN, NP]

Do you have a palliative care team on board to assist with these situations? In our unit there's a team with a APRN and social worker that meet with patients at the request of patients, family, nurses or physicians (although the official consult request has to come from the MD), to help families processing complex medical situations. They are definitely overworked, and we're often in situations where family have not yet met with a physician or the palliative care team, and we try to provide support within the scope of our practice. I know that sometimes families have asked me my opinion, not as the nurse, but as a person with understanding of the medical situation and a family of my own, to know what decisions I would make. I always tell people that hope is a powerful thing and we should never lose it, but sometimes we have to shift the focus of what it is we're hoping for. My most rewarding shifts have been those where I can help families that are coming to terms with the situation, and some of the most disappointing are where I feel I'm prolonging the inevitable while diminishing the quality of life and time they have together, but sometimes that's all we can do in our capacity on any given day. It's an unfortunate fact that in most hospitals, and in society, we don't start the conversations about end of life early enough, and we end up with heartache than could, in some cases, be avoided. Good luck to you.

[Ddestiny, BSN, RN]

I had a nice, long, thorough response....and then my computer ate it. :banghead:

So, to sum up, I really appreciate everyone's thoughts. It's interesting to see other perspectives. I've only ever worked in this 1 ICU and it's interesting the various cultures, even on this... In my unit, I feel like our doctors will often be too generic/not "blunt" enough to the patients and families, even as they're telling us outside of the room that the pt has no chance. It puts a lot of my colleagues and I into a position where we not only feel pretty comfortable giving more information about prognosis, and but that we ethically NEED to give it so that people can make informed decisions. It's amazing to me when doctors that choose to work in ICUs are not comfortable or equipped to have uncomfortable conversations.

During my RN to BSN program I was tasked to follow and interview a community health nurse, so I chose a hospice nurse. I asked her, since her "everyday" is the worst case scenario for most other nurses (patient demise), what is considered a worst case scenario for her as a hospice nurse. She gave multiple situations wherein the patient and family didn't understand that they were coming to hospice to pass away. They'd say things like "we are here to get Dad stronger for his next round of chemo," thinking it was some kind of rehab unit. She said it happened enough that she questioned if it was more than just the families not understand.....maybe they weren't being told in blunt terms that Dad is dying.

We are lucky enough to have a really good palliative care team, comprised of a physician, 2 NPs and an RN. The only bad part is that their availability in the hospital is mostly a Monday-Friday situation because they also see patients in their hospice house and out in the community. I know there have been situations where they've been both able and willing to come in during odd hours but it's not an expectation, so they aren't always in town or available. And for that I can't blame them, they should be able to have their own lives. It just creates a time where the care team can offer less support.

We've discussed having one of the palliative care NPs come to an upcoming meeting with the ICU Practice Council to help provide more education and strategies, which can then be shared with the unit. I also spoke to our unit Social Worker, who is just fantastic, and she gave an interesting strategy herself.... instead of coming across as trying to dissuade a potential choice that seems futile, such as aggressive therapy on a severely neurologically compromised patient, align yourself with the family member while still making sure that the realities are still stated. "We can move forward with aggressive treatment. Since your loved one has been intubated for 2 weeks and is not making progress towards ventilator liberation, we will need to discuss a tracheostomy to continue ventilator therapy *explain why*. This surgery also is normally accompanied by a PEG tube for nutrition. Then we will also need to prepare for the future and what that looks like. As long as everything goes well with the surgery, he will no longer be an appropriate ICU candidate within a couple of days post-op, but will also not be well enough to go to a normal hospital room while still ventilated. We will need to discuss which LTACH facility you'd like to transfer to,..... attempting weaning off the vent, physical therapy, nursing home....." It's so subtle, but I think it changes the focus of where the anger/push back will be aimed. Instead of railing against the Dr/Nurse/NP, the push-back will be against what that potential future looks like.

Thank you again for all of your input, and I continue to invite more if anyone would like to add.

[savedbygrace67]

I think nurses should have more time to do what they have to do without having a constant stream of visitors who want immediate answers to their medical questions and reassurances of what will happen to their loved ones. While doctors stick their heads in the room for a minute and they're gone, the nurse is left to address all concerns and needs of the family members and visitors, all while expecting to never look rushed or stressed despite the fact that she/he may have 2 more patients with urgent needs as well. It's become that we are not just taking care of the patients but the families as well. It doesn't do the families a great service to languish at the bedside for hours and days on end because they feel they're needed there..yet hospital policies dictate that families can come and go as they please and if they want to camp out in a recliner at bedside, so be it. It doesn't matter that the nurse may have to climb over sleeping visitors to get to the monitor or iv poles. It's become ridiculous.

[traumaRUs, MSN, APRN]

Having a larger palliative care team is imperative in larger ICUs/hospitals. The bedside nurse is consumed by her/his day to day obligations ie charting, charting, charting, doing routine care (few assistants these days), putting orders in the computer, etc.

In my recent hospital experience, its the palliative care team that handles the stickier situations ie "lets get Dad stronger for the next round of chemo" when its plain Dad is dying, "we can't let them go", etc.

As an APRN I frequently facilitate family meetings in the "come to Jesus moments." Its always better to discuss the "what ifs" versus the "what is."