Nursing isn't just about saving or improving lives. Sometimes it's also about helping patients die with dignity. So many times, I've seen patients decline to the point they are mentally gone and physically suffering, but their legal decision-makers can't accept death as an outcome. They refuse hospice and push for painful, risky interventions and surgeries. Don't get me wrong. I understand the pain of losing a loved one. I know it's hard to let someone you love go, and it often seems like you're doing the right thing by holding onto someone. But this isn't always true. I understand this is a debatable area, but once you become a nurse and spend 12-hour shifts with a very sick, suffering patient, you quickly realize holding on isn't always in the patient's best interest. At some point, the patient doesn't even know who they or you are anymore. All they know is how painful it is to live, every moment of every day, and since they don't know who their family is, they aren't living for anyone anymore. Just suffering and afraid. However, legally, if they are confused, they can't make decisions about their care unless they have previously documented their choices. We must rely on the next legal representative, whether it's a Power of Attorney (POA) or next of kin. That's why I always encourage people, even young people, to have an advanced directive. If you aren't familiar with this, it's a document that essentially establishes code status for the patient and is legally signed and considered the ultimate authority when deciding on care for a patient who can no longer communicate their wishes (i.e. they're in a coma after a car accident). Anybody can end up in a state where they can't communicate their wishes, regardless of age, health status, etc. Sometimes when I admit young patients and ask them if they have an advanced directive as part of the admission questionnaire, they give me this look like What? No, I'm not THAT old. But it really has nothing to do with age. Things happen, and life is fragile.
Anyways, I've lost count of how many patients I've had that were ready to die but whose family wasn't. This story is of one of those patients, but it was a very special one for me because I really fought for his right to experience a dignified death, and in the end, we succeeded in achieving that for him. It was a very emotional weekend for me, and I only got through it because of the support of my wonderful coworkers. This might be my longest story yet, so get comfy and grab some tissues if you get teary-eyed easily!
About a year ago, I was assigned a patient for 3 days in a row who was, from the start, an ethical nightmare. He was very confused and out of it, but his code status per his advanced directive allowed life-sustaining interventions up until cardiac arrest. In other words, we can't do anything once his heart stops, but until then, we could give powerful medications, ventilate him, etc. I don't really remember what his diagnosis was, but I believe it was heart failure. However, he also had a massive bed sore on his bottom that caused him horrible pain all the time. Imagine being bed-bound and literally unable to find a single comfortable position to lay in 24/7...
The pain and suffering became so much that, even while confused, he would cry out to us begging us to put him on hospice and let him die. He would ask us to call his family for him and hand him the phone just so he could beg them to put him on hospice. No patient should have to beg for death; this is the opposite of dying with dignity. However, he was technically "confused" so we couldn't just automatically change his code status because he asked us to. He had a POA. So technically, changing his code status would have to come from the POA, his daughter or sister I believe. For simplicity in telling the story, I'll say it was his sister.
I try to be understanding of his sister even now a year later. Maybe she didn't want to be POA. Maybe she just wasn't ready to say goodbye. Maybe she had a mental block for addressing the question of whether or not to put him on hospice. We don't know why, but she would NOT answer our calls. For over a week she missed our calls. The only time we could talk to her was the rare, brief visit in person, and when she visited, she wouldn't sign hospice papers. Unfortunately, her visits were short enough that she wouldn't see how much he suffered and wasted away in his hard, uncomfortable bed. I like to think if she saw that, she would have felt diffetently. We tried so hard to convince her he needed to be made comfortable, but she just wasn't ready for it I guess. Ethics and patient relations were consulted, but by the time I was assigned him, we had gotten nowhere.
The first couple days, he was still verbal and interactive. I was upset about his situation, but I did my best to keep him stable and comfortable. Pain meds, repositioning, etc. I remember on the first night he started doing what I was warned he would do, crying and begging me to let him die. He asked me to call his sister for him. Surprisingly, she answered.
"Please, let me be on hospice!" he begged her.
"Don't do this to me, Marcus. We need to talk face-to-face. I'll be there Sunday. Can you hang on until Sunday?" He tearfully agreed.
The weekend went on, and he started to get worse. His vitals became less stable, and he became less interactive. He stopped making jokes, stopped responding to questions, stopped watching TV. He became weaker each day. All I could do was hope and pray that when his sister visited Sunday, she would agree it was time and sign the hospice papers.
I came into work that Sunday night, expecting to find him placed on hospice. To my dismay, he was not. The sister had indeed come in that morning, but only briefly and she left before doctors had a chance to talk to her. By now, the patient was non-verbal and responsive only to pain. His vitals were terrible, his labs were in the toilet, and when his pain was bad, he would start struggling to breathe. I walked away from hand-off at shift change feeling frustrated and unsure of what to do, but almost immediately, I was given an opportunity to change things. His blood pressure was worsening. The tech came to me to report it was dropping into the 70s. I felt a wave of energy burst through me as I realized this was my chance to try to make things right.
"Call a rapid response." I told the tech. Typically, when a tech tells me a patient's blood pressure is low, I assess the patient myself first. I recheck vitals, ask if they have symptoms, call the doctor on call, etc. I never go straight to a rapid response team without assessing first. However, this time was different. I didn't want a rapid to come stabilize him. I wanted a rapid because the house doctor is part of the team, and I wanted him to call the family and get his code status changed. Apparently, according to the note by ethics, after a certain amount of time and certain number of failed attempts to reach the POA about a patient, we can actually bypass the POA and go to the next of kin. Which is exactly what I intended to do.
We got the crash cart and called a rapid response team, and the moment the house doctor arrived, I walked straight to him and didn't mince words.
"I didn't call a rapid to have him stabilized. He needs to be on hospice, and I was hoping you would be willing to call the next of kin about it." The doctor seemed a little caught off-guard, but he understood the situation well. I explained the issues we had been having with the POA, and after reviewing the ethics note, he agreed to try the POA and then try the next of kin if still no response. The POA didn't respond. He tried one more time to no avail, and then moved on to try his next of kin, his daughter.
To my great relief, the daughter answered, and she agreed to change his code status to no interventions before or after cardiac arrest. Setting up hospice is a day shift thing, so that had to wait, but at least now we didn't have to continue all the treatments prolonging his misery.
I thanked the doctor and the rapid team dispersed. Now it was just me and the patient. I dimmed the lights and put music on the TV. Before stepping out, I glanced at his vitals machine, still showing a blood pressure in the 70s. He seemed relaxed for the moment.
Minutes later, his daughter called me.
"Hey, are you Marcus's nurse?" she asked.
"Yes."
"I'm his daughter. Do... Do you think he might actually die tonight? Should we come in?"
"Honestly, I think it's very possible. His vitals are pretty unstable and he's minimally responsive. I think it would definitely be good if you came to see him."
"Okay, let me see if I can get others to come with me." I was glad to hear family was trying to come visit. It was the only thing missing for the patient now.
As the night went on, his vitals continued to worsen. His systolic blood pressure dropped into the 50s, with a MAP in the low 30s. MAP is a measure of how well blood is perfusing his organs. A MAP in the 30s is critically low, and a sign his body was shutting down. I knew he didn't have much longer. Suddenly, he became very restless, crying out in pain and writhing in bed. He had pain medication ordered, but a realization came over me. That pain medication would likely make the blood pressure drop more, and I feared it might even kill him. I had never been in this position before. He was clearly suffering, but it was safe to assume that giving IV pain medication might hasten his death. I hesitated and talked to my coworkers. Two nurses, Abby and Lily, encouraged me to do it and promised to accompany me when I give it to help me feel at ease. My charge nurse hesitated, as he was not technically on hospice yet so interventions that hasten death could be questionable. I called the house doctor from the rapid to ask for his advice.
"Absolutely, give it. You aren't hastening his death. You're making him more comfortable. He's actively dying right now, and he deserves to be as comfortable as possible." With that, I solemnly pulled the medication from the med room, rallied Abby and Lily, and entered his room. His blood pressure was still in the 50s, but he was still restless and crying out in pain. My hands shook a little as I pulled up his chart and scanned his band and the med. I documented that the doctor approved giving it despite the blood pressure and then drew it into a syringe. I stepped to his side and paused. I'm not gonna lie, I was scared. I didn't know how I would feel if this killed him. Would I feel shame? Guilt? Relief? Abby and Lily gave me a hug and told me I was doing the right thing. He was miserable and had been begging for death for days. If the medication causes his death, he was ready. I swallowed and then pushed the med into his IV. Almost instantly, he relaxed and his breathing slowed, but he didn't immediately pass.
I realized he was dirty and called a tech in and all 4 of us prepared to clean him up. Suddenly I noticed his breathing change again. He started exhibiting Cheyne-Stokes respirations, a type of breathing pattern often seen shortly before death. As the others prepared to turn him, I told them to wait as I observed his breathing.
"Guys, I think... I think this might be it. I think he's about to pass." A heavy silence fell in the room, silence except for his labored breathing. Abby and Lily came to my side, and we stopped everything and decided to just be there for the patient. I took his hand as tears filled my eyes.
"It's okay, Mr. Marcus," I whispered, my voice shaking. "You can go now. You're not alone. The time of suffering is over." Abby took his other hand while Lily put her arm around me. Something apparently came up so his family never came, so we knew we had to serve their role in this crucial moment. His breathing became slower and slower until there were long pauses of motionlessness. A couple times he would randomly gasp, but then, it stopped entirely. Tears streamed down my face as I struggled to keep my composure. Abby and Lily gave me a hug and told me I did an amazing job advocating for him, and that this was what he wanted. I knew that should have helped me feel better, but it didn't.
I still don't know if the pain medication pushed him over the edge, but what I do know is he looked mostly comfortable as he passed, and he didn't die alone. I don't know what happened to his family, but I try to give them the benefit of the doubt because they did come through in the end by changing his code status for him, so I assume they were unable to come. Because of this, I'm SO unbelievably grateful that it happened on my shift so I could be there. It gave me a sense of closure as well, and I felt honored to be able to represent the family at his side as he passed. This was one of the high points of my career in my opinion, even though it was more of a bittersweet ending. He was finally heard, and his wishes were respected, and in my eyes, he got to die with dignity.
Moral of the story: Well, there are so many... One, everyone should have an advanced directive. Two, choose a POA who you can trust to make decisions in your best interest when you can't advocate for yourself. Three, one of the top roles of a nurse is patient advocate, and advocacy can also mean helping your patient find peace in death and die with dignity. Four, sometimes nurses are the only family a patient has in their final hour, and that's truly such a special thing.
RIP Mr. Marcus. I'll never forget you.
- Bella, RN
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