In this episode I answer 3 questions from the hospice nurse support group on facebook.
The first question has to do with giving liquid morphine every 6 hours scheduled and PRN morphine every 3 hours PRN.
The second question involves using Tramadol for pain management.
The third question has to do with elevated vital signs for actively dying patients.
It has been just about 30 years ago that my wife and I decided to start a family. Our oldest daughter just turned 25. If you do the math, you can figure out that things did not start out as we had planned.
We struggled greatly with infertility. Eventually, we decided to become foster parents with the goal of adoption.
Through many trials and tribulations, that I don’t have the time or space to fully explain, we eventually adopted 2 amazing daughters, and then had 2 (surprise) bio babies. Things did not happen the way we planned, but we would do it all a million times again to have the family we have now.
Mother’s Day reminds me as much about loss as it does anything else. During the 3 full years we tried to start a family the “natural” way, Mother’s Day became something we did not enjoy.
For some reason, that I can’t fully explain, infertility causes feelings of loss. With every passing month, our inability to become pregnant just started to hurt more. Eventually, we just couldn’t go to church on Mother’s Day. It was just a painful reminder that my wife just couldn’t be a mom. My aunt Joyce lost her son when he was just 17 years old, so she didn’t go to church on Mother’s Day either. It just hurt too much.
Now I do hospice for a living. On Mother’s Day I just can’t fully clear my mind of loss. I’ve just cared for too many moms over the years. I am painfully aware of all the families who have lost their moms, and will spend today in mourning wishing for just one more day with their mom.
For those families, please know that I am thinking of you today. My profession puts me right in the middle of watching sons and daughters lose their moms to unrelenting disease.
Today is not an easy day for those who have lost their mom. Most of you will spend the day with your own family in celebration, but deep down inside you are thinking of your own mom, and how you have to get through today without her.
May today be filled with God’s grace and mercy as you feel joy and sorrow. Joy with the family you started, and sorrow for the family you have lost.
Dear Dr. Link,
I hope this letter finds you in good health. Today, I am celebrating eight years as a hospice nurse! Oh how time flies! I’m actually a grandpa now! Can you believe that?
As I write this letter, I am taken back to where we worked together at NorthCare Hospice. It seems so long ago even though it has just been eight years.
What a blessing it was to have Mike Barrett as the education coordinator when I started. He and I really hit it off right out of the gate. We spent two straight weeks together as he shared all of his knowledge and passion for hospice with me. I have no doubt that my first embers of passion for hospice were lit by Mike. He and I are great friends even to this day.
With this letter, I wanted to share with you the profound impact you have had on my life and career. I truly believe it was God’s providence that brought me to North Care Hospice.
Shortly after I made it out of orientation, we lost several of our senior RN case managers. I’m sure you could tell by just looking that Stephanie and I were very anxious to see such helpful resources leave the company.
I distinctly remember you grabbing Stephanie and I after one of the meetings and inviting us into your office. To this day I remember what you said to us both.
“I’m sure you are both used to doctors being too busy to take your calls or help you with urgent needs. I want you to both know that I don’t operate that way. I am here for you any time you need me. I always have my phone at my side. If you call, I will answer, and you will have my undivided attention. I will never make you feel rushed. I have time for you.”
After that conversation I felt so empowered! You stuck to your word, Dr. Link. For the next two years, I never once felt rushed or hurried by you. Your calm and caring demeanor carried me through so many challenging situations. I always knew I could step out of a home and call you for help. You were always kind and patient with me. You wanted me to become the best hospice nurse I could possibly be, and you took me to the next level.
Leaving North Care, and your support, was the hardest thing I have ever done professionally. I remember staying there a year longer than I had planned because I wanted to learn as much from you as possible. You poured so much knowledge and wisdom into me, and I soaked up every word and directive you ever gave me.
I’ll never forget the note card I left you on my last day. You weren’t in your office, but I left it on your desk. I remember writing that you reproduced yourself in me.
Dr. Link, I’m writing this letter to you today to let you know that I have shared your love and knowledge of hospice care to hundreds of hospice nurses all over America and even across the oceans. I have recorded podcast episodes sharing what you taught me. I have lead classes at multiple organizations based on what I learned from you.
Dr. Link, hospice in America is better because you bothered to show me love and kindness every day for over two years. Nurses everywhere are learning how to titrate meds at end of life. They are learning how to avoid power struggles with patients, family members and anyone providing care. They have learned the importance of frequent visits and attention to detail when their patients are imminent.
Because of you I have developed a fire and passion for this work beyond anything I imagined eight years ago. The flame that you helped start in my heart is a raging fire to continue the legacy you passed on to me.
Six years ago I thanked you for reproducing your passion for this work in my heart. I promise to take the flame you gave me, and place it in the heart of any hospice nurse who will ever listen to what I have to say.
Forever changed,
James Dibben RN
When I was in my freshman year in high school, my parents moved us from Kansas City, MO to Emporia KS. We lived in a small community that consisted of 2-3 trailer homes and several pre-fab houses.
We only lived there for two years, but during that time I became very close friends with our neighbor, David Whittington. We became such close friends that he fell in love with my cousin and moved to Kansas City when we left the area.
David had a brother who was older than him. Rodney hung out with us now and then. Sometimes we would travel into town and hang out with him at the mechanic shop where he was employed.
Rodney and I were not close, but we were familiar. All of our conversations were in the presence of others. He was always super nice to me. Once We moved back to Kansas City, that relationship ended.
A couple of years ago I was surfing LinkedIn, and I found Rodney’s profile. He was now running an LTC facility in Olathe, KS. I commented a couple times on some of his posts. He had masterfully navigated some of the challenges his facility was facing with COVID.
Shortly after we reconnected, the agency I was working for admitted a couple patients in his building. I was very excited! This was an opportunity to reconnect and reminisce.
I had a nurse with me who was on orientation. We entered Rodney’s facility and followed the procedures. This was in the heart of the pandemic, so it took a few minutes.
We worked our way to the administration offices. Rodney’s secretary greeted us.
“Can I help you?”
“Yeah, I’m a friend of Rodney’s from back when I was in high shook. I have not seen him in over 30 years.”
“Oh wow! Okay, what’s your name?”
“Well, I go by James now, but back when I knew him I went by Stacy.”
“Okay, well, he is in a meeting, but it is almost over. Have a seat.”
Shortly after sitting down, Rodney invited me into his office. We visited for about 20 minutes. I reminisced with him about our time in Emporia. I told him that I see David routinely around town. Our conversation eventually moved to the challenges all facilities were facing at the time trying to navigate COVID. He was polite and kind through the conversation. He treated me like he had all the time in the world even though that was far from the truth.
I left his facility feeling good. It was nice to reconnect with someone after so long.
A couple months later I happened to run into David at our local Walmart. I was so excited to share with him how I got to visit with his brother Rodney after so many years.
“Hey Dave, how is it going?”
“I’m good. How are you?”
“I’m good! Hey, I got to see your brother a couple months ago! I found out he is an administrator at a nursing home in Olathe and went by to visit.”
David looked at me like I was a complete stranger. His stare was so blank that he was almost looking right through me. I almost felt like I was in an alternate universe where I was a complete stranger to David, and we had never met. I almost wondered if I was addressing the correct person in front of me. It was eerie!
“Hello? Dave? You have a brother named Rodney Whittington, right?”
“Yes, but he doesn’t run a nursing home.”
”Sure he does! I just sat in his office a couple months ago, and we, well I, reminisced about our time in Emporia.”
“Not with my brother you didn’t. My brother works in Topeka.”
I grabbed my phone and opened LinkedIn. I found a picture of Rodney Whittington and showed it to him.
David broke out in loud laughter!
”That’s not my brother! I don’t know who you were talking to, but it wasn’t my brother.”
David pulled out his phone and found his brother on Facebook and showed me his picture. These two Rodney Whittingtons resembled each other like a chihuahua resembles a bullmastiff.
To this day I wonder what Rodney Whittington in Olathe, KS thought of me that day. He handled the whole thing with grace and poise.
I barely know the Rodney Whittington from Emporia, KS. Apparently, I knew the Rodney Whittington from Olathe, KS even less!
Hospice nurses are in high demand. We could leave one company today, and have a job at a new company tomorrow. It is really that easy.
I am very public about what I do for a living. If you’re reading this article, then you are well aware of how public I am. Because of how outspoken I am, I get a lot of hospice questions from friends, family and complete strangers.
One of the most frequent questions I get is, “Which hospice should I choose?” Now, if you live in the area of the hospice I work for, I’ll suggest my hospice. Many times I get this question from someone who does not live in my area. I have a simple response to this question.
“It doesn’t matter as much which hospice you choose. It is more about the team that you get.”
This is a very truthful statement. For the patient and family, the nurse and the team you get could easily be the difference between a good hospice experience, and a less than ideal hospice experience.
I always recommend that someone find a really good hospice nurse in their area, and then choose the company that nurse works for. It is a much better way to find the hospice of your choice. The nurse doesn’t work alone, and the chaplain, social worker, and home health aide are absolutely essential.
The nurse is still the central case manager for all hospice cases. You need a really good one for your best hospice experience.
Don’t try to pick the best company. Try to pick the best team. It will take some work, but you’ll love the results.
“Does he still wake up if you touch him?”
“He did last night. I have not tried since we all went to bed. I think he might be wet.”
Conversation is simple. The daughter reminisces about the life she had with her father.
“Has he had anything to eat or drink recently?”
“Not since Saturday night. Will you help me change him?”
I gather all the supplies needed. I put on some gloves and pull back the sheets. After a check of his disposable brief, I discover that he is soiled. Together, we put on a clean brief. He barely makes a sound during the procedure.
The daughter gives me a big hug before I leave.
“I don’t know how I could possibly do this without everyone’s help.”
“You are doing great. I’ll be back in the morning.”
“How was the night?”
“He moaned when we tried to change him last night. Did I hurt him? I was so scared that I was hurting him.”
“Sometimes, patients just don’t want to be moved much when they are dying. Right now, he looks comfortable to me.”
“Will you help me change him?
I gather all the supplies needed. I put on some gloves and pull back the sheets. After a check of his disposable brief, I discover that he is soiled. Together, we put on a clean brief.
The daughter gives me a big hug before I leave.
“I don’t know how I could possibly do this without everyone’s help.”
“You are doing great. I’ll be back in the morning.”
I visit before our normal team meeting, so it is early.
“How was the night?”
“James, I could not stay awake last night. I fell asleep in this chair. I’m so tired.”
“I know you are. I’m really proud of you. This isn’t easy.”
“Can you listen to him and tell me when he will die? I want to be right next to him when it happens.”
“I wish it worked that way. Nobody can predict an end of life event. I really need you to be careful when trying to decide to sign up for something so impossible. You will eventually need to go take a shower. You will need to use the restroom, or you will need to go pick up a family member to make a final visit. Don’t set yourself up to do something that is impossible. Be at peace with yourself if your father dies when you are not in the room.”
“Will you help me change him?
I gather all the supplies needed. I put on some gloves and pull back the sheets. After a check of his disposable brief, I discover that he is soiled. Together, we put on a clean brief.
The daughter gives me a big hug before I leave.
“I don’t know how I could possibly do this without everyone’s help.”
“You are doing great. I’ll be back in the morning.“
“James, here is my granddaughter. Her mom had to drop her off this morning.”
The granddaughter looks at me with hesitation. She is probably about three years old. I smile at her and wave. She has a blank stare on her face and crawls into her grandmother’s arms. After a few minutes she is fast asleep even though it is nine in the morning.
“My son is here. He’s sleeping in the other room. He cried most of the evening. He spent every day of the week after school here when he was growing up. He loves his grandfather so much.”
“I’m glad he is here to help and support you. How was the night for your dad?”
“He doesn’t respond to anything. We changed him before everyone went to bed. I’ve been in this chair all night. I don’t know how much longer I can do this. I wake up every hour and check on him. I just want him to pass so this will all be over. Am I a terrible person?”
“You are not terrible. You are amazing. I wish all of my caregivers worked as hard as you do. You love your dad. You honor him with your presence and care.”
“Will you help me change him?
I gather all the supplies needed. I put on some gloves and pull back the sheets. After a check of his disposable brief, I discover that he is soiled. Together, we put on a clean brief.
The daughter gives me a big hug before I leave.
“I don’t know how I could possibly do this without everyone’s help.”
“You are doing great. I’ll be back in the morning.“
“Have I told you about my mother?”
“No, not really.”
She goes on to share some of her experiences with her mother. He has never discussed her mother before. At first I’m surprised. Her father is dying and now he wants to talk about her mother?
“She needs a break from reality,” I tell myself.
She pulls out her phone and shows me some YouTube videos and some Wikipedia pages. I discover that her mother is somewhat of a celebrity. Nobody fancy to the average American, but a really big deal to her. I look at the pictures and watch the videos.
After a few minutes she returns to her regular chair. After a few more moments she sits up.
“Will you help me change him?
I gather all the supplies needed. I put on some gloves and pull back the sheets. After a check of his disposable brief, I discover that he is soiled. Together, we put on a clean brief.
The daughter gives me a big hug before I leave.
“I don’t know how I could possibly do this without everyone’s help.”
“You are doing great. I’m putting you on the daily visit list for the weekend. They will take great care of you until I return Monday morning.”
On-Call staff makes visits over the weekend. The reports are almost identical to my visits. Encouragement and help with cares. Weekend staff tries to increase visits to twice daily. The daughter declines. She has this covered. She is amazing.
Both daughters are present for this visit. It’s a very tear filled visit. It has been a long seven days and they both report irritability when out in the public.
Their father’s respirations have slowed. He does not respond to sound or touch. The daughter providing most of the care struggles to stand without help. She grabs her cane for support and limps across the the room to the kitchen.
“I’m so worn out, James. I never imagined this would last so long. I lose track of time, and I forget to eat.”
“This is longer than most. Your father is going to cross over when he is good and ready.”
The sisters tell stories. I listen quietly. I am like an invisible observer at one point as they reminisce and have a few quiet laughs.
“Will you help me change him?
I gather all the supplies needed. I put on some gloves and pull back the sheets. After a check of his disposable brief, I discover that he is dry.
“He doesn’t need to be changed. I think his kidney’s have stopped working.”
“Will that cause pain?”
“No, not at all. Just keep doing what you are doing.”
The daughter gives me a big hug before I leave.
“I don’t know how I could possibly do this without everyone’s help.”
“You are doing great. I’ll be back in the morning.“
This was like any other morning. I checked the on-call report before leaving the house. There are no changes or updates. After about 10 minutes in the car I send my caregiver a text message.
“I’ll be there at eight-thirty.”
“I need you now,” is the reply I get back. I respond with, “Okay.”
I know what this means. I’ve been doing this for too long. Her father has either passed, or he is very close. Something has changed in a dramatic way.
I pull into the driveway, and most of the family is on the front porch. As soon has his daughter sees me she breaks out in tears. I step out of my car, grab my nurses bag and head for the front porch.
His daughter embraces me in the biggest hug I have ever received from a family member.
“He stopped breathing about five minutes after I sent you that text message,” she whispers into my ear.
Her hug feels like it will last forever. She is devastated.
“I’ll go in and make it official. Take your time out here. I am not going anywhere.”
It is obvious from the moment I enter the home that her father has passed from this world to the next. I listen to his heart for the full minute just like I was taught in nursing school. After sixty seconds of listening, I have my official time of death. I sit on the sofa and let things unfold naturally.
For the next thirty minutes I say nothing, and I do nothing. This is their time not mine. I need to become completely invisible.
The daughter gets out her phone and starts playing his favorite songs. I watch as everyone listens to the songs. There is crying, stories and laughter. The tension must be broken, and his daughter has all the right solutions.
Once the room returned to silence, his daughter looks at me and says, “Will you help me bathe him?“
I gather all the supplies needed. I put on some gloves and pull back the sheets. Together, we give him his last bath.
I don’t get asked to pray very often. We have chaplains in hospice. That is their job.
William was just different. He didn’t do anything like anyone else. I had a feeling his story would be different than any patient I had ever had.
William lived his life by the facility smoking schedule. He would wrap himself up in his warmest clothes and go outside with his two cigarets to light up.
Facility staff would escort all the smokers outside several times a day. I would see William between smoke breaks. He spent most of our visits talking about his pain problems. I worked with facility staff to get it under control. It took almost a month to really get it managed.
After about a month of seeing William, he started talking about is faith with me.
“Jesus is my lord and savior,” he told me one day out of nowhere..
“He’s mine too,” I replied. “I know I’m not the chaplain, but can I pray for you?”
Without hesitation he replied, “Yes.”
I sat down next to him, grabbed his hands, and I said a prayer. When I was done the most amazing thing happened. He said a prayer over me! I’ve been doing hospice for a while. I have never had a patient pray for me. It was overwhelming to say the least. I left his room in tears.
Over the next month his health started to decline. He was sleeping through his smoke breaks. To help him out, I started taking him out during my visits. He would just share his life experiences with me. He just talked about his family. He loved them all very much.
He got to where he would not let our visits end without me praying. I would pray for him, then he would pray for me. Our prayers were simple. I would pray that his pain would be controlled. He would pray and thank God I was his nurse. I always left with tears in my eyes.
He started getting confused towards the end. I was visiting him one day, and he was very confused. He was terrified of me. He didn’t know who I was, and he no longer trusted me. He went from hugging me to total terror of my presence. I went home that day totally dejected.
I didn’t know what to do next. I wanted to continue to take care of him, but I didn’t want to cause him to be scared. I didn’t want to contribute to his fear and anxiety. He had not been eating for several days, so I knew I needed to see him again the next day.
The following day I made a visit. It was a Friday. I remember walking down the hall and peering into his room from outside the door. He was sitting on the edge of his bed with his eyes closed. I quietly walked towards him making sure I was completely silent. I sat down next to him and grabbed his hand.
”William, it’s James,” I whispered.
“Hi, James,” he replied without opening his eyes.
“How are you feeling?”
“I’m sleepy.”
“Can I pray for you?”
He was too sleepy and confused to answer this question. Desperate for my own closure, I prayed for him one last time. I asked God to provide him with a peaceful transition from this life to the next with his Lord and Savior, Jesus Christ. He died that weekend with his family at his side.
I try to teach everyone that hospice is not about the hospice nurse. Since going back into the field to be a case manager, I have been reminded how hard it is to maintain boundaries with our patients.
Sometimes, we just meet patients who change our lives in their own way. Instead of avoiding the situation, I think it’s okay to embrace it. The best hospice nurses will eventually make deep connections with some of their patients.
Sometimes, those connections are so deep, we are the ones changed forever.
I wanted to send out a quick message letting all of my subscribers know about some changes at The Hospice Nursing Community.
We have totally redesigned the website to make it easier to navigate. Please watch this short video for details!
You can also click HERE to watch the video on the landing page at The Hospice Nursing Community website.
Once again, I want to thank all of your for your support!
I just learned recently that The Hospice Nursing Podcast is in the top 10% of all podcasts hosted at Buzzsprout.com! They host just under 120,000 podcasts!
I could hear him coming down the hall with his walker. His wife was on twice a day visits, and I was helping for the weekend.
I started on Friday evening, and planned to visit each day at 9am and 6pm. I don’t like running twice a day visits very close together. I just don’t feel like a short time between visits provides the kind of support a family needs.
Anyway, this was Sunday morning, and to this point, her husband had not said anything to me or entered the room.
I saw the walker first, and knew it was him. He poked his head into the room and looked around the corner at me. I was sitting in a chair up agains the wall next to the door.
He started the conversation.
”We are getting closer to the end, aren’t we?”
She had been unresponsive since my first visit on Friday night. This was a sign that she was days from the end.
“Yeah,” I responded, ”It won’t be much longer.”
“She looks comfortable to me. How much longer do you think?”
“I really can’t say. Everyone is just very different,” I responded.
He entered the room and sat down next to me. He started to share his life with me..
“I’ve owned a barber shop here in town for 40 years. For many of those years I cut hair for the local army base. Most of the men would bring a picture of their sargent and tell me to cut their hair exactly like his. He had a flat top. That’s the hardest haircut to do.”
He went on to explain the challenges of trying to give someone a flat top.
“You have to cut the sides so much longer than the top for all the hair to hit at the same point above the head. Every head was just so different. Those men would line up outside of my shop, and I would be cutting flat tops all day long.”
I love hearing stories like this. I sat and relaxed, and let this gentle man share his life with me.
After several minutes he looked at me and said, ”I guess hospice is like haircuts. No two people are the same. Everyone is just a little bit different and needs some kind of special touch and consideration.
After about half an hour, he got up, grabbed his walker and slowly returned to the living room to be with the rest of his family.
I don’t know if hospice is really like haircuts. What I do know is that for this kind man, on the day he was going to lose his wife, hospice needed to be like haircuts.
It has been seven-and-a-half years since I started in hospice. At about the two year point I developed this strong desire to have the biggest impact on hospice patients as possible.
I really thought this impact would be to work my way up the ladder to hospice administrator. I felt that this was the best way to have the biggest impact.
At my five year point in hospice, I accomplished this goal. I was the administrator of a hospice. I was convinced this was the pinnacle. I was convinced this would be my chance to affect the most hospice patients for the best. While being a hospice administrator is an enormous responsibility, and certainly very important, the role just was not for me. At least, not at the time.
Fast forward 2 years, and I decided to write my Avoiding Hospice Burnout Series, and subsequently, start The Hospice Nursing Podcast.
The community response has been just simply overwhelming. Nurses from all over America have reached out to me over the last year thanking me for the content and help. I am simply humbled by this response. I never imagined being this much help to so many nurses.
My dream of helping as many hospice patients as possible has expanded to helping the nurses who serve those patients. My level of fulfillment has skyrocketed over the last year. I am overwhelmed by the compassion and kindness I have found among hospice nurses. Their commitment to their patients and the communities they live in has simply been an inspiration.
Last week I decided to launch a private community specifically designed to bridge the gap from podcasting to real world engagement. I launched HospiceNurseTraining.com into the hospice community.
The response has been absolutely fantastic. Nurses from across America have joined this community. It’s not a big community, but it is a beautiful community.
Probably what has been the most amazing thing, is the humility I see in the group. These nurses are providing hope, help and encouragement to each other. They don’t just provide advice. They also provide love and kindness and understanding. They give and receive help without concern for themselves. It’s about the patients they are serving and how they can have the deepest impact.
I will be providing all kinds of trainings and education in this group, but I truly believe the real value of this group will be in its members.
My favorite quote from the week comes from Cindy who stated, ”Hospice Nurses are not in it FOR their patients. Hospice nurses are in it WITH their patients.”
After just the first week, I am more convinced than ever that hospice nurses absolutely need this type of community. A super safe place to share experiences and provide support for each other.
I’m so excited for the future of this community. Avoiding hospice burnout has a new face and it is Hospice Nurse Training. I hope you will consider joining and take your hospice career to the next level.