It's 0653. I pull up to the hospice unit, clock in, fill my coffee mug, and get my nursing brain printed out. At 0700, I count narcotics and take report on six patients. It's going to be a busy day, one of those days where I must control the chaos, take the time to support patients, complete as many of the thousand tasks set before me as I can, and be prepared to deal with the unexpected.
I work in a palliative/hospice inpatient unit, a place where patients come when they are in crisis, can't be cared for at home, or simply have no place else to go. One of my patients today is in indigent man who has no one in the world. We cannot locate his family. We don't even know his real name. He slipped into a coma yesterday and is non-responsive. We take care of him, call him by the name we think he has, and witness his last hours or days.
In the room next to the indigent man is a very, very old woman, the matriarch of a large Native American family. Her family comes and goes all day. At any given time there are 5 or 6 people in her room on folding chairs. Children walk the halls as if they own the place, but they are respectful and polite. Volunteers keep the cookie jar full, the coffee pot brewing. The family has filled the kitchen with potluck dishes. They tell the staff the food is for us, too, and the family members of other patients if they want it.
As I head towards the med cart, the smell of bacon fills the unit. A CNA is cooking for one of the patients who is still eating. I meet the wife of one of my patients in the hallway. She's tearful and scared. I have four patients who need scheduled meds now, but I take her aside and listen to her for a few minutes. I say the only thing I can say with honesty: "I know this is hard. We are here for you. "The tears start to spill and she turns away and heads to her husband's room.
I run to the med cart and pull the meds. One of my patients, let's call him Robert, is actively dying. I admitted him three days ago and have not seen him since. He's a younger cancer patient. His cancer moved fast. Three months ago he was living a full life. When I admitted him he was still talking, expressing his grief, telling his horrendous tale of all the invasive treatments he had received. I could tell how traumatized he was by the expression on his face as he was reliving his recent ICU experiences. He was admitted directly from the hospital. He said that after the last treatment he just wished he could die right then and there. I asked what were the most important things we could do for him here. He said he wanted quiet, no alarms, no more tests or treatments. But most of all, he wanted peace. I told him, "This is not a hospital. You are in the driver's seat here." I pointed out that there were no alarms here. I said we would try very hard to make sure he was comfortable and at peace. That was two days ago. Robert was now actively dying.
I am a newer hospice nurse. I am still learning the ropes. I left my successful job in a pediatric ICU/step-down unit three months ago. I had one very hard year as a new grad nurse, two very good years, and two years of slow burn-out. In the ICU, I often took the dual roles of life-saver and torturer. Many times the torture was worth it. But many times it was not. My shifts were task-oriented, intense. They had to be. I focused on the monitors, drips, airway, vent, labs, juggling all of that very carefully. The patient sitting in the ICU bed was a human being whose feelings were, at that moment, secondary to the more immediate and important need of saving their life. And sitting in the dark corner of their room, scared and silent, was that patient's parents, living their worst nightmare. Once in awhile, I would try to find a break in the million tasks I needed to do on time, so I could go and explain what was going on, offer to get them a cola or validate their feelings. But more often than not, I just had to let them sit. I didn't have time. I went into nursing to heal. And while the ICU certainly did that much of the time, I became burned out. I lost the heart of nursing. Thus, my calling to hospice.
As I enter Robert's room this morning, I notice his breathing is heavy, his forehead wrinkled. I call his name and he opens his eyes. They search the room, unfocused. I put my face near his and smile and say, "Hello, Robert. Good morning!" and his eyes find mine for a second and hold them. He relaxes and smiles, and then his eyes let go of mine and close. He grimaces again. His breathing is still heavy, chest congested. I give him his PRN dose of morphine and Ativan, but I see very little improvement. I leave to go email the doctor on call to ask for an increase in Robert's medication. I still have patients who need scheduled meds but Robert urgently needs a med adjustment. He is, at the moment, my first priority. Two family members approach Robert's room. I know it will pain them to see him in such distress, and I tell them I just contacted the doctor and more medication should be available very soon.
I fly into my last rooms, give the scheduled meds, see that they are stable and doing fine, and log into the computer to check my email. An order change for Robert! Robert, luckily, had central line access. I give the meds immediately and stay to watch as he relaxes, his breathing becoming less labored, and his face more peaceful. I tell the family I want to position him on his side, and they hold the pillows for me. As I am positioning his cancer-wasted body, I point out the mottling of his knees and feet, how they feel cool, and how he is sweating, and how these are all signs that death is approaching. They bravely listen and nod in acceptance. They ask, "How long do you think he has?" I tell them, "Each person has their own timing. It could be very soon. I am guessing hours to a day or two. But I think it will be sooner rather than later" I tuck him in and put my hand on his forehead, something I do with all my patients, as tenderly as I do my own children, and I say a silent prayer for peace. Then I leave and close the door behind me.
I navigate my way past the crowded hallway filled with the family of the Native American matriarch, and I hear singing from within her room. I go into my last room, a woman whose pain crisis is now being managed well. She has a few more months, and hopefully, she will be able to remain comfortable. She is snuggled with her small dog in her bed, her son at her side. I work around the dog in doing my assessment. She is due to go home later today. I return to my nursing station, peeking in on each patient as I pass their rooms.
I have a mountain of paperwork to do. How will I ever be able to do it all? I need to print out medication instructions for the patient with the dog. Before she leaves I will have to find another nurse to count her controlled meds with me. I still need to enter the email order of Robert's increased medication doses in the paper chart, to be co-signed by another nurse, and then print out a new MAR sheet for that order and sign it. I still have wound care to, and in another 30 minutes, it will be time to turn everyone with the CNA's assistance.
As I am working behind the stacks of charts and papers, the sad wife comes up to me. "I'm sorry for interrupting your work... "she starts off. I stand up and come out from behind the counter. I tell her, "You are not interrupting me. It is my job to support you. That's why I'm here. "She relaxes and asks questions about what steps to take next, what to expect. Some of her questions are better answered by the social worker, so I escort the wife back to the room and go and talk to the social worker about her needs. As I make my way back to the desk, I peek in on the patients again. I notice our chaplain sitting at the bedside of the indigent man, singing a hymn.
I continue to do my paperwork and emails. Something tells me to look up, and I see Robert's door opening. His uncle steps out, and he has that look on his face that I have gotten to know: shock, grief. I reach for my stethoscope as he approaches. He says, "I think Robert's gone." I walk in with him, find the bed surrounded by loved ones, all silent. All eyes are on me. I can tell from first glance that he's lifeless. I take Robert's hand in mine and hold it gently, feeling for a pulse. I put my stethoscope on his chest and listen. Everyone holds their breath. Silence. I listen for a few more seconds, then look up, make eye contact with everyone and tell them, "I'm so sorry. Robert is gone." The tension breaks. Tears are released and pour down cheeks. People hug each other. There is relief in the long, drawn-out death.
I stand to the side for a moment and wait for the first wave to pass. I say, "Take all the time you need with Robert. We are here for you. Please come and find us if you need anything, anything at all." The uncle nods. I turn and close the door quietly. I go to our patient census board and wipe out all the details of Robert that no longer matter, leaving only his name. I write in, "TOD: 1246."
I give out my next round of meds, continue to assess my patients, update the doctor. I am invited to take some lunch from the buffet of the Native American family, and even though I brought my own lunch, I know they have a need to feed us. I fill a plate as one of the sons nods approvingly. I go back to my desk and start to break down Robert's chart and prepare to destroy his controlled meds.
A woman rushes in, tearful, and asks where Robert's room is. I stop her and ask if someone has called with an update on him and she nods and said, "Yes, I know. He just died." She starts to turn to the room and then stops and turns back to me. She puts her hand on my forearm and asks, "Was it peaceful? Did he go peacefully? Because that's all he wanted." I look her in the eyes. I can honestly say "Yes, he did. He was very relaxed and breathing easily, and he was very comfortable." Tears form and she says, "Thank you. Thank you" before the words leave her. She enters his room.
Two more hours pass. Robert's family tell me they ready for me to call the mortuary. I make that call and go back to the afternoon tasks. I perform my wound care, finally: an elderly woman who was found down, a broken hip and multiple severe skin tears. She never fully regained consciousness. It is clear that until her accident she had been in good health. Her family is still in shock. They asked how long it might be. I tell them that once a person stops eating and drinking, as she had three days ago, it would be about a week, give or take a few days. Her daughter nods bravely. I reassure her that her mother appears comfortable and we plan to keep her that way. She swallows hard and says a quiet, "Thank you."
I send the woman with the dog home after giving report to her home nurse. In my later afternoon rounds, I notice that the indigent man's breathing pattern has changed. His head is arched back and he is grimacing slightly. I moisten his dry mouth and lips and administer a PRN dose of morphine, turn him on his side, tuck him in, and touch his forehead with my prayer before leaving his darkened room. I do another round of scheduled meds, and some PRN's, too.
The man from the mortuary is here to pick up Robert. I have him sign some forms and take him to Robert's room and introduce him to the family. A few minutes later Robert's body is wheeled out. His family lingers in the lounge. Each of them hugs me or shakes my hand and says thank you as they trickle out. I have so much paperwork to do, but I stop those thoughts as I take the time to shake hands with them. It's hard for them to leave, to know that it's over. I am helping them to do that.
It's dinner time. The Native American family offers (insists!) that we take some more of their food, so we all do. I make my last rounds. I notice the indigent man has slipped away as quietly and anonymously as he walked through his life. I confirm his death. TOD: 1803. I remove his pillows and position him straight. I call the county's indigent burial number and know that someone will pick him up soon. I set aside his chart. The night nurse can finish his discharge.
My charge nurse hands me a sheet: "We have another name," she says. I take report on the patient who will be going into Robert's room in about two hours. Our unit is in high demand, a revolving door.
As a hospice nurse, I have to continuously strive to not get lost in the tasks, to prioritize, and to do the most important ones well. Hospice nurses have a lot of"wiggle room" to make nursing judgments. Each patient is different, and so are the rules for each patient. I'm still adjusting to this shift in the model of care, still untangling my mind from the ICU. Slow down. Meet the patient where they are on their journey, walk the pace that they set. Look at the patient, not the machines.
It's 1905. I count narcotics with the oncoming nurse. I give report, trying to pace myself to give the most important details about each patient, but not so long that the important things get buried. 1930: I should be done, but I'm not. I take my paper charts to the break room and I finish writing out my narratives on each chart. The Native American matriarch, the woman with the broken hip, Robert who is now at peace, the woman with the dog, the man with the grieving wife, and the indigent man. I relive my day with each of them. It hits me, as it does almost every day, the sacredness of the work I do, the journey I am allowed to walk with the patients, and the job I have of facilitating that journey so it is as peaceful as possible. And knowing that it just as much as an honor to be there for the last breaths of life as it is to be there for the first breaths. And then there is still paperwork to do. I pick up my pen and finish charting.
2003: Finally I am done. Am I forgetting anything? I hope not. I clock out. As I walk through the lobby, some of the members of the Native American family wave to me and call out "Thank you! Goodnight!" I enter the crowded parking lot. I see four people hugging each other and crying. The county mortuary van pulls up and parks. He is there for my indigent man. I get in my car and head home down the dark streets. I see life all around me: a family out for a bike ride, people pulling out of the grocery store parking lot. I call a friend and catch up as I fight fatigue. "How was your day?" she asks. I have so much I could share, but I'm so tired. I have no words. I have a thousand words. I finally settle on saying simply, "Good. I had a really good day."