Beginning of the End
The emergency room is not the place for palliative care.* Emergency nearly screams fixable problem. Or at least its an amnesty of hope. People walk in and expect to walk out, most of the time with a prescription. People look at me with hope and expectations. “Patch me up. I’ll be on my way.” Hold on, not so fast. You were just called back to the hospital from the radiology department to receive the results of your MRI.
And there you sit and wait, and wait, and wait for an available physician to see you. Not going to see the doc who ordered the test, it’s after hours. Not going to see a doc who knows anything about you. Going to get turfed. Turfed to people who don’t know a thing about you or the conversations you’ve had with your primary physician. Gonna make you rehash your entire medical history. And we most likely won’t ask you how you feel about it.
We all know the results of the MRI. Saw it on the computer. It’s ugly. So sorry. And no one in the ER wants to break the bad news to you, we wanna wait for the specialist, not your specialist, mind you. It’s after hours. And our on-call specialist is currently seeing other consults, you’re on the list. Be right with ya.
“Well, how has your father been feeling?”
“He’s in so much pain, but he won’t say it. Sometimes he doesn’t know his words.”
“Does he have vision problems? Balance problems? Walking problems?”
Yes is the answer to all three of those questions and remarkably, he looks well.
“I’ll introduce you to the neurosurgery resident when he gets here.”
Wow, that scan is ugly.
Neurosurgery arrives, “We can’t operate. Well, we can but we won’t. If we try to take out the tumor, he’ll lose his ability to speak and write. He may not even wake up. And there’s blood vessels involved. We can radiate to shrink the tumors and give him steriods for the inflammation. It could give him a year, I don’t know, its probably less.”
This is the conversation that Neuro had with me, I don’t know what he said to the patient and his son but it probably wasn’t much different although probably a little more compassionate.
I left a voice message for Palliative Care.
This wasn’t the only time I left messages for Palliative Care that week. There would be 2 others, I guess it was my theme of the week.
They came to me with yellow eyes. Not “lemonade” yellow or “sunshine” yellow but a bruised yellow.
They came to me with huge bellies, overdue pregnant bellies, but they were not pregnant women.
They came to me with skinny arms and legs, like the pictures of starving bloated children we see on the TV ads for Save the Children. Only they were not children.
Not good. (Not good even if they were children)
They came to me with aged, wrinkled faces well above their 62 & 39 years, respectively.
And all I could see was his face, superimposed on theirs like a haunted house hologram.
But I was prepared to take care of these two men who had destroyed their bodies and lives through the excessive consumption of alcohol, because of 8 specific weeks last summer.
It’s been a year since a dear friend, talented musician and one of the most likeable, well-loved men died as a result of alcoholism. And I haven’t talked about it or written about it. And I’m faced with it everyday. The “it” being death and dying.
I thought that somehow my being a nurse would benefit me in helping my friend and his family through his hospitalization. I don’t know if it did. It was the most challenging experience of my life and career to date. As a friend I was grieving and as a nurse I was holding his hand, as well as a lot of others, helping them understand his diagnosis, prognosis and treatment options. We all knew what the outcome would be although most of us prayed for or asked for a miracle. As a nurse, I suppressed the friend, not wanting to show the friend’s fear and anxiety that the nurse didn’t have “The Hail Mary,” that the friend (and nurse) knew their would be a funeral in the near future. Talk about a split personality!
But it was because of this experience that I am no longer afraid to have the “death conversation” with a patient or family members. I mean, who wants to be the one to have that conversation? No one. But it’s part of the job. And according to an article on Yahoo, a neglected part of the job. And come to find out, sometimes families and patients especially, are relieved to have someone ask about their feelings towards their illness, death and dying. Who knew?! Certainly not most doctors and nurses, we like to avoid that issue because doctors have a “save” mentality and nurses want to “heal” and neither of us want to be emotional.
“We just left We’ve Done All We Can For You Hospital but his breathing isn’t getting better and he’s not eating, so we came here.”
“What did WDAWCFYH tell you about Rocky’s illness?”
“They said that his liver was almost completely gone and now his kidneys aren’t working great either.”
Rocky’s brother-in-law hands me the discharge packet from WDAWCFYH. There’s a pamphlet for palliative care with a business card inside.
“Do you understand what they told you?”
Blank stare as tears form in the corner of brother-in-law’s eyes. Mine too, for Rocky’s face morphed into a hologram image of my friend. I take a deep breath, pause….
“Ok. So you know Rocky is dying and you’re looking for a way to save him?”
The brother-in-law nods his head.
I talked about transplants and clinical trials and quality of life versus quantity of life. I didn’t feel I needed to “soap box” about alcoholism and its devastating effects. We were both looking at it. I talked about what being tethered to a hospital bed would look like and feel like. I talked about how each family member would turn towards every health professional who would walk through his brother-in-law’s hospital door with hope in their eyes and love in their hearts wanting to hear that his liver had miraculously healed or that he would get a liver transplant. I talked about how conversation would eventually become nothing more than idle chit-chat as the build up of ammonia from a failing liver would take his consciousness. I advised the brother-in-law to encourage his family to “say what needs to be said” with Rocky but more importantly to listen to what he has to say. For the moment, Rocky was fully aware of what was happening. But time was short and he knew it. I could see it in his eyes. And he said it.
I was speaking from my own personal experience. And that was the first time I allowed myself to do that. I got through it and I don’t know how. But I do know that in those 8 weeks during which I watched my friend slowly die, I learned more about myself from him than ever before. For the first time since becoming a nurse, death became personal. And I do know that my patients and their families benefit from that experience. I love him and hate him for that. And I miss him terribly.
*In my hospital and most others, Palliative Care is synonymous with Hospice since it is only called into service when we see patients who are at the end of their lives.