Preparing families for EOL

[tofu-tofu]

Hi guys! I have a question for you Hospice nurses out there who probably deal with a fair amount of end of life/withdrawal of care situations. I am an ICU nurse. I have learned over time that I am extremely awkward with families when it comes to EOL. I never know what to say to comfort them, I worry that I will get in the way, etc. It just doesn't seem to come naturally to me. Of course I do all the usual.. make sure the patient is presentable, looks comfortable, chairs in the room, make sure the patient's hands can be reached in case family wants to hold their hand, have chaplain come if requested, monitor on/off depending on family preference, make sure beverages and tissues are in the room. I always tell the family I am readily available for any needs and that I am their support during this difficult time. But other than the basics, I am pretty crappy at comforting families and honestly tend to just hide in the corner.

What are some things you say to family members to comfort them? How else do you prepare them for EOL? I'm also *very* curious to know how other nurses orient people to the actual dying process (the noises they will hear, what is normal, what is not what to expect, etc.. the specific wording of your explanation). THANKS!!!

[vampiregirl, BSN, RN]

Most of the time, this conversation gets easier the more times you have it. I tell families that everyone's journey is unique and then provide an overview of the basic changes as one approaches end of life along with diagnosis specific things (changes in breathing, mottling, cooling extremities, decreased level of consciousness, restlessness etc). Also, explain what can be done (if interventions are needed) to address comfort. This often reassures the family members to have a general idea of what to expect. I also do a lot of education on non-verbal s/sx pain, so that family members can tell when their loved one is comfortable (or uncomfortable so it can be addressed).

As for the conversation/ emotional support - take your cues from the family members. Listening as family members process and simply listening is often very helpful. Encouraging self care. Letting them know you are available for questions. Taking care of their loved ones (like the things you referred to in your post) and keeping the patient clean/ dry and comfortable.

[CarterHolly, RN]

I'm imagining it's a bit different in the ICU setting. At home I have some time to prepare the pt and families, and I explain that it's a process, much like being born. Just sorta in reverse, if you will. Make sure they understand if you're medicating for dyspnea or tachypnea that they understand those are very uncomfortable feelings, and that Morphine isn't "killing" their family member. Some struggle with that idea, and then there's always the husband's cousin's wife's ex brother in law's 3rd cousin removed who calls up the pts family after not talking to them for 20 years and tells them not to allow me to administer any of that. That's always fun. Hopefully at least you won't have to encounter that. Explain how cheyne-stokes are normal and what that looks like. I explain no need to feed as there's not much calorie expenditure if they're bed bound and unresponsive. There's so much more I could post, but I hope this small snippet helps some!