Friday, February 19, 2016

Who Wants to Tell Someone Their Loved One Is Dying?

Photo by John Flannery via Creative Commons
By Lori Ruder

Who wants to tell someone their loved one is dying?

Intensive Care Unit patients at an academic medical center are the sickest of the sick, so chances are someone will have to. These are heart-wrenching conversations in any instance, whether the patient is young or old. However, conversations regarding the death of someone well into their decades are no doubt a whole lot more palatable than those regarding someone who has their whole life ahead of them.

Before me was a young man in his mid-twenties who had been diagnosed with an aggressive cancer only six months prior to my caring for him. It was wildly metastatic, progressing through all treatments. He came to the ICU with progressive renal failure to be “tuned up” in hopes of strengthening him until the next round of treatment could start.

From the doorway I witnessed a gaunt, jaundiced young man who looked like he should be at home with hospice. Surrounding him were devoted family members. The nursing voice in my head instantly said, “This young man is dying, what are we doing?” Then he smiled.

And then the voice in my heart said, “Why would they want to give up?”

I spent that night shift getting to know and building trust with his parents, assessing where they stood in the process of realizing they were losing their son. Both were exhausted; his mother was nodding off in the chair. The patient was tired, sleeping in between interactions, his father lovingly helping him use his pain pump. He never complained although under the covers was a taut and rigid abdomen and 4+ pitting edema. And with each interaction I got a bright smile.

Who would want to tell them their son was dying?

The next day a family meeting was scheduled and apparently no one from the ICU team wanted to tell them. According to the day shift nurse, the meeting was a disaster with a lot of unnecessary talking and not much listening. No clear plan was made except to continue what we were doing and reassess tomorrow.

What I saw in the bed that second night was a young man with days to live; years of experience had honed my prognostication skills. Did we assume his family knew he was dying? I stopped and asked myself a few hard questions. What if it was my son in that bed?  What if someone knew that he had days to live, would I want to know? Wouldn’t I want the chance tell him all the things I wanted him to hear while he was awake enough to hear them so that he could respond with his own?  Wouldn’t I want someone to be honest? I realized it was going to have to be me.

In the past I would not have been comfortable taking that step, instead waiting for a physician to be the bearer of bad news. However I was in the middle of a Gero-Palliative Nurse Residency program where I was learning ethical principles and communication skills. I knew I had the right and responsibility to advocate for my patient. I knew that it wasn’t simply bearing bad news, it was giving the gift of honesty.

I spent the first two hours straightening his room, bathing him, caring for him. The simple task of cleaning his room, removing extra equipment, and making him more comfortable did wonders for his family. They were so thankful. It’s a delicate dance I do, an art form of quiet caring, listening, and trust building. I am very nervous about my performance. Will I be strong enough to get out the words they need to hear? When will be the right time? Will I miss my chance? How will they react?

I watched his Oncologist stop by, hoping this would be a great segue. He could start the difficult conversation and I could join in. But he sorely disappointed me, glossing over the obvious and saying, “Well, let’s see how things look tomorrow.” Tomorrow? What if tomorrow brings respiratory distress and a ventilator? Cardiac arrest and chest compressions? There weren’t too many tomorrows to look forward to.

I continued on with my dance, learning about what a good son he was, very smart, hardworking, so strong through it all, always ready with a smile. I knew that smile.

Who would want to tell them he was dying?

I would. The moment finally came at 3  a.m. when his mother awoke after I turned and repositioned him. I sat down next to her and asked if I could be honest about what I was seeing, because as a mother that’s what I would want for myself.
She agreed. I told her he was dying and that it would be soon, within a day or two. That I would hate to see him in any more pain or have more procedures. And that since he still wakes up she could say what she needed to say and so could he. I sat with her for an hour as she told me that they weren’t dumb, that they knew, how she had been ordering black sweaters in preparation.

That they knew in their brain, but how do you tell your heart? They were waiting for someone to tell them. Instead medical interventions kept getting offered. They were waiting for someone to tell them.

The next hour I spent with her, listening to her love her son and be so proud of him, helping her grieve and prepare for what would happen in the next day was one of the most special of my nursing career. I arranged for a transfer to the Oncology floor they were familiar with so that they could be with the staff they knew, in the comfort of a nice big room. He passed away at 9 o’clock that night.

Year after year nurses are ranked as the most ethical and honest profession. Bedside nurses have 24-7 intimate contact with patients and families. We are in the trenches with them, we know their situation and what they are going through and have been through better than any other medical professional involved in their care. We see them at their weakest and most exposed and vulnerable, yet we provide as much dignity as possible.

Why wouldn’t we be some of the best people to broach such a difficult subject? Palliative Care training and knowledge gave me the moral courage to take charge and do and say what many times I waited for physicians to do. Empower your nurses through training. Give nurses the knowledge, the confidence, and the power to make a difference in the very vulnerable population of those who are dying. Many are waiting for you to open that door so that they can accept your gift of honesty. My experience reaffirms my true belief that while it can be very rewarding to help someone live, it can be just as rewarding, if not more, to help someone die.

Lori Ruder BSN, RN, is a Certified Hospice and Palliative bedside ICU nurse at University Hospitals Case Medical Center and an Advanced Practice Nurse student at Case Western Reserve University.  She encourages all bedside nurses to be certified in Palliative Care because it is what they do every day.  In her free time (what’s that?!)…she will let you know when she finishes grad school. On Twitter: @LoriRuder

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