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by Lori Ruder

March 19 is Certified Nurses Day, a day set aside to honor nurses who improve patient outcomes through certification in their specialty. The American Nurses Credentialing Center (ANCC) states: “A registered nurse (RN) license allows nurses to practice. Certification affirms advanced knowledge, skill, and practice to meet the challenges of modern nursing.”

As an ICU nurse, I see the challenges of modern nursing as witnessing sicker patients undergoing extreme measures; attempting to extend the length of life but not necessarily the quality of life. ICU nurses have 24/7 intimate contact with their patients. More times than not, I have a direct hand in implementing these extreme, often painful measures, leading to moral distress.

While most ICU nurses choose a Critical Care Registered Nurse certification (CCRN), I chose a certification with a primary aim to improve the quality of life for my patients and families: the Certified Hospice and Palliative Nurse (CHPN). Palliative care focuses on holistic care of patients and their families, including management of physical, psychosocial and spiritual symptoms, as well as communication about patient and family concerns and how treatment aligns with each patient's values and preferences. ICU patients have serious and life-threatening illnesses requiring advanced care. These serious illnesses and the intensive care they require can cause critically ill patients to suffer from a variety of distressing symptoms including pain, dyspnea, delirium, fatigue, and anxiety. This advanced care frequently transitions to end-of-life care. I regularly see patients transferred to my unit when other measures are exhausted, when we are the last hope against the inevitable. Witnessing these symptoms and the difficult decisions made during the transition can cause families significant distress and remorse.

I have often said that I am a Certified Hospice and Palliative ICU nurse because many times my most critical care goes to the ones who are left behind. My certification in palliative care enables me to gently guide patients and families through the illness and the transition to end-of-life care. It allows me to simultaneously provide comfort and life-saving measures: concurrent critical care and palliative care, just as it can and should be. When I feel my patients and families aren’t getting the care they deserve, my CHPN credentials give me the knowledge base, confidence, and voice I need to advocate for them.

My certification also serves as an outreach for hospice and palliative care. My name badge has a noticeable yellow card behind it that says “LORI, CHPN”. The purpose of the card is to easily identify a nurse’s first name and certification. I am often asked by my patients’ families what the “CHPN” stands for. In this death-avoidant ICU culture one might hesitate to mention the words “hospice and palliative care”. I do not. I proudly explain the meaning of my credentials and their purpose: to provide expert symptom management and to guide my patients and families through serious illness while focusing on quality of life. By the time I am asked what my certification means, they have already witnessed me working to keep their loved one alive. They have already begun to trust me and know my intentions are good. They have seen me celebrate the good news, encourage their hope, and wish for their miracle. They see me on their team, hoping for the best while preparing them for the worst. Year after year nurses are voted the most trusted profession. What better way to demonstrate the importance and the good of hospice and palliative care than to have more bedside nurses with CHPN credentials?

On this Certified Nurses Day, I encourage any nurse who cares for patients with serious illness and who would like to see more care focused on quality of life to consider certification in hospice and palliative care. I believe we can have a hand in changing the culture of healthcare. The CHPN is the preferred nursing certification of the Hospice and Palliative Nurses Association (HPNA). If you are interested in learning more about this certification and others offered, please visit the Hospice and Palliative Credentialing Center.

Lori Ruder, MSN, RN, CHPN is an ICU nurse at University Hospitals Cleveland Medical Center, where she was the first ICU RN to attain certification in Hospice and Palliative Care. This certification has improved not only her care of patients and families, but also her job satisfaction. You can find her on Twitter @LoriRuder.

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By Lori Ruder

He moves over and she snuggles in close to her fiancé. She pulls their blanket over them. A special blanket made just for this moment. “I love you” she murmurs, soaking in his face and his warmth. “Goodnight lovebirds,” his mother teases as she turns out the lights.

This moment is both tender and tragic: tender because they are demonstrating their love for each other, tragic because this is happening in the ICU.  Her fiancé is on life support and he is dying. He moved over because I moved him over to make room for her in his narrow hospital bed. I repositioned his ventilator tubing and central lines out of her way, closed the side rail behind her for support, and helped her pull their blanket over them. This blanket was made by ICU nurses for moments like this: to have something to offer when medicine doesn’t.

Using our own time and money, we gather together to make blankets. We make them in many colors and patterns, to match the many styles that come from all walks of life. They are simple fleece tie blankets, the kind a Girl Scout might make, but they are soft and warm. They are something soft amidst the harsh reality of critical illness and death, and something to provide warmth and comfort--to touch a loved one during last moments as if to capture their essence before they are gone. The blankets are a memento of touch to take with them when they leave this place and their loved one behind.

We give our blankets when we know the end is coming, after
the “I wish we had better news” has been said. And sometimes we give our blankets when it hasn’t been said yet. We know when it’s time usually before anyone else, before the family realizes or the physicians are ready to admit. We give them at our discretion; we do not need an order.

We have blanketed older patients so that husbands or wives of many years will have something that remains. We have covered a young mother dying from cancer with two, one for each of her preschool-aged children, so when they don’t have memories of their mother’s arms around them they will have her blanket and know it came from her. We provide markers so that those coming to say goodbye can write a message of love. When the patient dies we leave it to the family to decide where it goes. Some choose to leave it behind. Some choose to keep it with the patient after death. Many take it home with them. It is our gift of love in a time of sorrow, and how they choose to accept it is honored. Our hope is that these blankets will warm their hearts and cloak their grief.

“Blanket” defined as a verb means “to cover completely with a thick layer of something.”  Synonyms include “cover,” “shroud,” “swathe,” “envelop,” and “cloak.” By using the term “cloak” my intention is not to cover or obscure grief, to pretend it isn’t there. By using the term “cloak,” I am referring to the Latin origins of the word, “pallium,” now in its current English form as “palliate.”  To palliate means to make something less severe, to ease and soothe, without removing the cause. Our intention is to hopefully make grief less severe, to ease it in some small way through a simple gesture of cloaking the dying with a blanket created from caring.

On this particular night my patient already had a blanket, one that had been autographed with messages of love, one that had covered him and his mother earlier when she moved in close to say tender goodbyes. But I realized he had two important women in his life who needed comfort. His mother, who loved him before his birth and never left his side, and his devoted fiancée who dreamed of a future with his own children that would never come to be.

I took her out to our supply of blankets to choose the one just right for them. She instantly liked a light green one with polka dots.  Although she was hoping for purple, his favorite color,our selection didn’t offer a purple one that was masculine enough for the strong man she knew. I told her, “He loves you. He’d be happy if you chose the one you really like.” And so it was the light green one that she snuggled under close to him, sleeping peacefully while his heart took its last beat. It was the green one that she clutched to her chest after he died, her face a blank slate of shock and disbelief. It is the green one that I pray she still holds tight in her time of grief, feeling the same sense of closeness and tenderness she felt on their last night together.

It was a simple fleece blanket, tied together by ICU nurses who bear witness to much suffering, sadness, and loss. It was something to offer that didn’t cause pain and only provided warmth and comfort. These blankets are tied together by our sincere desire to palliate the heartbreak of our patients’ families and, selfishly, our own.

Lori Ruder MSN RN is a Certified Hospice and Palliative ICU nurse in the Medical Intensive Care Unit at University Hospitals Cleveland Medical Center.  Many times spoken words can’t give her heartfelt and heartbreaking experiences justice, so she writes them to remain resilient.  If you’d like to summon your inner Girl Scout and help the cause you can find her on Twitter @LoriRuder.

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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