So, I was on call on Sunday. I received a call from a patient’s daughter. The patient happened to be one of mine. She told me that her father had changed. His breathing had changed. His mental alertness had changed. And he seemed weaker.
I was out there within 15 minutes, as I only live that far away from them. His daughter, Mary, was right. His condition had declined. He was doing all the things she said he was. I knew what this meant. Now Mary was looking at me like she wanted me to share that knowledge with her.
Something about Mary . . .
She’s in her mid-30’s. Married with three children. Business owner. Overall, well-rounded, responsible person. She’s bright, cute, very personable, outgoing – – and very obviously her Daddy’s girl. I could tell, from the first day I met her, that her father is THE man in her life…. second to none.
Mary isn’t ready to let him go. She knows it’s happening – – but she’s not ready. And she most definitely is not ready to hear what I have to tell her.
But I do have to tell her. She’s there…looking at me, pretending that she wants to know.
I finish my exam on her father. I get the medications that he needs in order to keep him comfortable. Then we sit down on the couch in the living room.
Mary, her husband and I.
I gently start explaining to her that her father’s time is limited. I explain why. I go over with her the signs and symptoms that we look for in a patient who has entered that phase that we refer to as ‘actively dying’.
Diminished breath sounds.
Upper chest congestion (some refer to it as the ‘death rattle’ – but I don’t)
Mottling (bluish color in the lower extremities – feet, ankles, calves)
Decreased alertness, confusion – sometimes restlessness.
These are all signs her father is exhibiting.
But there’s more. I don’t want to share it – – but I do. I have to. It’s the only right thing to do, considering the circumstances of his diagnosis. I believe, wholeheartedly, that a family needs to know what the potential expectations are regarding their loved one’s fate. Especially in this case when you have a daughter who is giving round-the-clock care to her father.
I take a deep breath.
I explain that her father’s diagnosis of squmous cell cancer is complicated, because of it’s location. He has a tumor in the right side of his face….it’s located right at the base of his jawbone on the right side. It involves the area surrounding his jawbone and extends behind his ear…the side of his neck and wraps around to the base of his skull.
She is nodding – – wide-eyed. This much she already knows. It is why he has facial paralysis. It’s why he can’t speak, or swallow, or even close his right eye. He has his mind, though. He knows – – he’s aware.
I take a deep breath and proceed. The tumor, I explain, is sitting right atop his carotid artery. Without the chemo and radiation that he was getting 6 weeks ago – that tumor is growing and disrupting the tissue surrounding it. I explained that there is a very real chance that the tumor will erode the carotid artery and her father will bleed out. I explained that this is not a pretty sight as it could mean active and gross bleeding from his mouth, nose and ear. There would be blood, and lots of it. At this point, there is nothing that we can do to prevent this from occurring – – but I really need to let her know that this is a possibility so that she is prepared, mentally and emotionally, for this to happen.
Her young children visit him often. I explain that it would be a very good idea to have several dark green or dark blue towels on hand, close by his bed. In the even that this happens – – the dark color of the towel will hid the bright red blood, and it won’t be quite as traumatic for everyone around him as it would seeing bright red blood on white towels.
I explain that he has the needed medications required so that he doesn’t feel any discomfort or pain throughout. I explain that we will take absolutely every single step necessary to make sure that he does not suffer one ounce.
“Umhmmm…..ok….yea….uh huh…..alright….thank you, Lisa, for coming out here tonight and for responding so quickly. We really appreciate it. We won’t hesitate to call you again if we need anything.” As she’s walking me to the door.
A flat response. I’m worried about her.
That was Sunday. Today is Friday. I visited her father three times this week. He’s doing…..ok…in the grand scheme of things. He’s comfortable, at least. He even laughed a little bit at a joke I made to him. I didn’t see Mary there at all this week – which is odd, because she’s always present at my visits with her father. I called her on Wednesday to give her an update on his condition – – I got her voice mail and asked her to call me.
Today, I went into the office to get caught up on some paperwork. My boss called me into her office. She explains to me that Mary called the office earlier and spoke with her. Apparently she wants her father re-assigned to another case manager. Why? Tina asked? Mary explained that while she thought I was a very nice person – – she didn’t think I was sensitive enough. She thought that I should know that there are some things that a daughter doesn’t need to know about her father’s fate. She thought that if I were sensitive – – I wouldn’t have been so brutally honest about what might happen to him. She’s sorry — but she wants a different RN taking care of her father from now on.
I’ve dealt with many patient’s and their families who are angry. In denial. People who displace their anger onto the nurse because they aren’t ready to accept the reality of the situation. It has got to be so difficult to accept these things. I’ll say that it’s difficult to present these things to the family and the patient’s – – but it has to be 1000 times more difficult to be on the receiving end of news like that.
I don’t blame Mary. I’m worried about her. I guess I can understand where she’s coming from on this. I’m taking it personally, a little bit – – how can I not? You try and try to do your best by these people. You do everything you can…try to be as gentle as possible, while remaining realistic at the same time. Finding the right words at the right time is tricky.
Maybe it wasn’t the right time for Mary. Maybe I should’ve waited. But I wanted her to know — to be prepared for it. Should I have left it hang? Should I have kept that knowledge to myself? Was I being TOO honest and realistic?
I don’t know. This one will bug me for a few days until I wrap my mind around it. However, it’s like I told my boss today – – looking back over the last two months taking care of this man, there is not one thing I would have done differently. I have not one regret in this case. I feel it’s my obligation to inform patients and their family – – especially a family member who is the primary caregiver, on what the potential outcomes may be. I don’t know if there is an answer to this one.