How's that for a catchy title? Doesn't it just make you want to read on? Or maybe not.. I was just out reading some of my favorite blogs, and prolific Raging Ray/The Dark Prince/The Messiah (as he likes to be called) had an interesting post about death and dying. He said we need a new language for talking about death. My response was that we need to be honest about death. We have a language for it, but we rarely use it correctly.
I don't know a harder time in my professional practice than when we have to speak honestly with parents about the fact that their child is dying. There aren't really the best manuals (no matter how much material we've read on the subject) that guide people in how to tell someone that their loved one is dying. Each situation is so individual, and the emotional response you receive from the parents/family is so different from case to case. I've found two things that helps me when delivering this news, and believe it or not, it is often the nurse that's been involved with the child and family on a daily basis that breaks the news, not the docs. In our facility, we practice primary nursing where the patients and families hopefully receive care from the same nurse or group of nurses each day. It helps establish relationships with the family that are trusting and helps the patient receive better care with regards to continuity. The theory is that if you know the family and the child, you will oftentimes provide better, more sensitive care.
The number one thing about breaking the news is to be honest and straightforward. I mentioned to RagingRay that it seems like there's such a taboo on talking about death, that people will oftentimes dance around the topic or talk about death in weird tones or references. You recall the Mother in "Meet the Fockers" who couldn't say certain words without whispering them? Remember her saying "Cancer" in this really bizarre, harsh whisper? That's almost how it feels sometimes when people deliver bad news or talk about death. If we whisper it, or never actually say the word "dying," then somehow we're removed from it. Making death an unreal or vague reference does not seem to help the families cope in my own personal experience. I don't mean to say that you have to be cold. I believe you should be honest and available to accept whatever their reaction will be.
The number two thing for me regarding talking to a family about their dying child, but no less important than the number one mentioned above, is to NEVER NEVER NEVER say that there's nothing more we can do. I think that leaves the family dangling in the air without anyone to turn to. We, as healthcare providers, must assure the family that there are things we can do--not to fix the child or make him/her well, but to make them comfortable through the dying process. We can do so many things! We can: manage the patient's pain and assure the family that we will not let the child suffer in pain; oftentimes provide an opportunity for the parents and family members to say goodbye; perform meticulous postmortem care (bathing the child, removing invasive tubes, combing their hair)and provide a quiet space for the family to hold their child who has died; and be emotionally available to the family members who need a hug or a strong shoulder. On our unit, we have a nurse who has created special memory boxes where we take imprints in plaster of the child's hand and foot that are framed, take a small lock of the child's hair (only if the family wants it taken) that is wrapped in a ribbon, and take a final photo of the child. All of these items are wrapped in a box and mailed to the family later.
Each family seems to come to the unit with different beliefs and practices regarding death. Some believe in an afterlife and benefit from having a chaplain or priest with them. Some simply want the healthcare providers to "feel" with them. It's hard to step across the line and allow yourself to really feel the pain of the loss while you're "on the job," but if a family needs to know that you will grieve the loss also, then I feel like I'm obligated to share those feelings with them. Most often, we try to stay a bit removed and grieve after the family has left the unit. We try to remember that our crying is often selfish when done with the family, and it's time to take care of the family's needs, not our own. Those that were close with the family will often attend the services. I'm always surprised when families express how happy they are to see us at the services. I have to admit that if the services are for a child that I was particularly close with, attending the services provides a great deal of healing and closure for me personally.
When it comes to dealing with someone who is old enough to know that their prognosis is terminal (see that removed lingo???)... Let's put that in real terms. When it comes to dealing with someone who is old enough to know that they're dying, I find that it is important to be as direct and honest with them as I would be with their family outside the door. Oftentimes, when I've been faced with a teen who is really angry and scared, I find that nobody has truly talked about what it's like to die. They have some of the most basic questions that have never been addressed. All they know is that they are dying. They're lying there in a hospital bed, maybe losing or having lost their hair, feeling like sh!t, and they are dying. Opening up a true dialogue is often as easy (?) as asking them, "Do you have questions about what's going to happen to you when you die?" I cannot tell you the number of times I've seen an angry teen look relieved when asked that question. The parents often don't want to have that discussion because they're dealing with their own pain, or maybe they don't even know the answers. So, providing the opportunity to ask the questions is so valuable! They ask the most intense to the most mundane things. They ask things like: Will I feel pain? (the number one question); What will happen to my body after I die? Will I be naked infront of a lot of people? (A primary concern for a teen). And, if I know the family's beliefs about the afterlife, I will discuss that with the teen along with the family. Answering honestly helps demystify the dying process. It makes sense that if we can discuss medical treatments honestly that we should also be able to discuss the end of life honestly.
I've had in my lifetime, personal friends who've died. Funny thing, or not so funny thing, about dealing with a friend who is dying, it seems that friends of the dying person often seem to disappear. It's hard to be emotionally available to a friend when you think you might not know the right thing to say. We're so afraid to talk about dying that we'll oftentimes avoid the subject altogether. You know, it's okay to say the wrong thing. It's okay if the discussion becomes uncomfortable. Life isn't always comfortable, and death sucks. Being there, being present and emotionally available for the good and the uncomfortable stuff, being honest--that's friendship. I think that could well apply to any friendship, couldn't it?
I'm spent. I thank RagingRay, The Dark Prince for being so open, raw and real. Your writings are thought-provoking, painful and beautiful to read. I might feel happy or uncomfortable when I read your posts, but I most certainly FEEL. Thanks for making me think.. I haven't really put down into words how death makes me feel and how I personally and professionally deal with it. Thank you
Peace and joy to you all.. And, Ray, keep on raging.
Peace and joy 
I have the water carrying capacity of a long-trekking camel at this point. No doubt I'm setting myself up for stress incontinence in my later years. Tee hee--make granny giggle and watch her pee! I digress
Let it flow let it flow let it flow... 
