Gah. These are rough. But they have to happen.
Ideally, the doctor brings this up when they decide nothing else can be done. When you know this is about to happen, you should be in the room. It sucks, but you should. You’re there with them all day, your presence should be comforting to them because they’re familiar with you.
Sometimes we need to take the palliative care step before hospice or comfort care. If the patient’s death isn’t imminent but doing q6hr blood sugar checks are of no point anymore, palliative care is now something to look at.
Sometimes families will ask if we can not do this or that. I take that opportunity to educate them about palliative care, saying something along the lines of, “there is something called palliative care where a doctor comes to see your loved one and looks at what all is important at this point and what things can be stopped that may cause more harm than good.” Then I list stuff that I think they would address, like SCD pumps, blood sugar checks, lab draws, CT scans, etc.
I talk about how our goal of care and if it is quality or quantity. I try to be care not to overstep my boundaries though. I don’t want to get out of my scope of practice.
Keep in mind, certain religions do not believe at all in hospice or palliative care. I’ve had a few devote Muslim patients who believe in the longevity of life. They will fight for every single day their loved on has on this earth, even if it is in pain and suffering. Granted, that is not the majority of patients, but I had to keep their beliefs ahead of my own person opinions of what I would do in that situation. While the option of palliative and hospice care should still be presented, be aware they may not respond positively. And that’s okay; our opinions don’t really matter.
Your tone should change a little bit after the goals of care have shifted from recovery to comfort. I don’t know how to describe it, but just be more comforting, supportive, and reassuring. These patients (if they’re awake) and families are very emotional, understandably so. Don’t act differently if they cry. It’s okay to hug them. That took me a while to be comfortable with. But once I watched a nurse that I really looked up to go and hug a crying wife, I felt reassured that it was okay. And that wife hugged and cried so hard, but man, she really needed to. And she was so thankful that nurse hugged her first. That was now her go-to person for everything.
A lot of times we’re at a loss for words when dealing with these patients and families. We just don’t know how to talk to them all of a sudden. That’s okay, it’s not a comfortable place to be. But we still need to be there for them.
Something that I have learned that goes a long way is just acknowledging what’s going on.
“Mr. Smith, I just want you to know that I’m really sorry that you’re going through this.”
That says “I’m here with you, I acknowledge this sucks, but we’re going to walk through this and I’ll be here to support you today.” It can be a small amount of reassurance during a really rough time.
You’re not going to make them feel better or take the pain away, you just need to be comforting and supporting. Support their decisions, empower them, tell them that their loved one is lucky to have them be there for them. I also have told families that, although this is a terrible situation, I have seen patients pass with no one at their side, and that I think it’s wonderful that so many people clearly loved this person.
Once you do it a few times, it’ll get a little easier, but it’s never easy. You’ll also get a lot of “why would God allow this?” and “why is God taking them away from me?” kind of questions. Everyone’s comfort level with that situation is different. A standard, “I don’t know; I’m so sorry” is always okay because, really, how can you ever begin to answer that?
Being a Christian, I have prayed with patients and their families multiple times before. Keep in mind, this was only after I had the green green green light after multiple unprovoked conversations about their beliefs and God’s role in their life. So if you feel comfortable, and they have given you the green light without you mentioning anything at all first, go for it. I’ll never forget those patients, they were so thankful for that support and will always, always have a place in my heart. Some of the sweetest cards came from them. They made me cry weeks later! They really get to my nursey heart.
If you’re not comfortable with all that God stuff, which is more than fine, call the chaplain to support them spiritually. They are awesome. And if the family doesn’t connect with that particular denomination or person, they’ll know who to contact to get the right one there.
Although, during those really sudden comfort care conversations, I’ve found that patients and families are more comfortable with their nurses than the chaplains. Mainly because we’re there at their side all day, and in walks some new guy they have to explain everything to. They know you and are comfortable with you and don’t want to add to the mix. I get it. I don’t know if I would want that if I were in that situation either.
Being there for those patients and families is tough and even if you feel like you haven’t helped at all, that’s okay. You probably have and had no idea. They’ll probably never forget you. They may not remember your name, but they will probably never forget the nurse that was there for them when their loved one died.
So tell them you’re sorry, tell them you’re here for them, grab them some tissues, let them cry on your shoulder, hug them, don’t be afraid of them, and if they want some prayer from you, go for it. They’ll be forever thankful for your support.
And even if you don’t know what the heck to say to them, just take really really good care of their loved one. That will always be enough, because that’s all they really want.
Helpful tip: if you’re going to withdrawal life support, don’t say you’re going to “withdraw care”.. this sends a message to the family that can make them think their loved one will receive less care. We don’t want them to think that. Often when we switch to comfort care, these patients require more nursing care. I would use the term “transitioning to comfort care” rather than “withdraw care”.