Trying to alleviate the heavy weight
At times, when the parents are saying “I can’t do this…” along with “I wish this didn’t happen, how could this happen…” when they’re at the point very toward the end and they’re trying to grapple with all this stuff, I think reminding them that their child hasn’t given up and they haven’t given up but that this illness, disease, or trauma has caused their body to say “I’m done.” That sort of takes the responsibility off the parents, that decision was made by this physical body, not that child and not that parent. This was beyond that and sort of try to take some of that off of them because that’s such a heavy weight.
Lisa Pixley RN, Nurse
I think I have just come to appreciate over time the importance of just being there with families. I think the role that I try to play for families is more as a witness than as a guide or as an expert because none of us know what it is like to be in there and the experiences of each of these families differs so much and there are so many individual variables that can go into things. I think a powerful contribution I can make to families on our unit is when I am willing to be there and to sit and to listen and to meet them where they are. It is a humbling experience to share in this most intimate experience of these family’s lives. As I am there baring witness, I am talking with them and validating with them. Almost trying to authenticate what they are experiencing. Within reason, there is really no right or wrong way to do this and no one can really judge.
I really try to stress that with families that this is unbelievable and they probably have never experienced anything like this in their lives and I hope they never will experience anything like this again in their lives. I think back to some of the deaths that I have been involved in: it is this most horrendous feeling that you get in your gut. Sometimes it is just quiet. It is like talking to any therapy patient too. Sometimes you just want to fill the silence and talk. I just recognized how tremendously important it is to just sit through it. I just need to sit with it and be there and push through the discomfort and the feedback that I get from families that I have worked with is that is something that they appreciate so much, just us giving them permission to just be where they need to be.
Rachel Tunick PhD, Clinical Psychologist
Just being present
I’ve realized that you don’t have to say anything. Just being there and letting the family guide you. It can be very important for families to just know your present, even if you don’t say anything; just being there, crying with them and letting them know it affected me and I cared about their child.
Jodi Elder RN, Nurse
I think all too often we feel that we have to do something in order to be helpful and really what seems to be most important is to be without feeling there has to be a concrete outcome to what our actions are. So, being present is probably the most important thing we can do.
Joanne Wolfe MD, Palliative and Advanced Care Team
I think being there to help guide families through the dying process can be helpful. I remember the first time I went through that was mainly because I did not know how to leave and I did not know when it was appropriate so I just stayed. Then I realized later that was what the families remembered the most: the fact that I was just there, or at the desk outside, made them feel more comfortable about asking me questions rather than someone else.
Ahmet Uluer MD, Pulmonologist
The late night talks
Often it’s 2:00 a.m. when you have those discussions and there aren’t many people available. Everything is quiet because visitors are gone. Parents don’t have to put up the front for the aunt and the uncle and the grandparents and to hold them together while they’re trying to hold themselves up because now it’s quiet and it’s dark. Something happens at night. Those fears, those very big fears, come out. Like I say, it’s great to have all those people, but usually the nurse at the bedside who’s been there for 12 hours or days in a row who knows this family, may be the one that the person says “Look this is too much, what do I do? How can I make this decision?” to.
You may be all there is, so you better be prepared to: (1) expect any answer from one question you might ask, and, (2) be ready to sit, because it might take a while. Just because you’ve addressed it once doesn’t mean it won’t continue. You may have just opened the door for the discussion or you may just opened somebody’s mind to something they may not have known about.
Lisa Pixley RN, Nurse