You never know what your first visit with a patient will be like. I’ll never forget my first visit with Earl. He was living with his wife in downtown Kansas City. They had lived in that house for over 50 years. Most of the houses around them were either vacant or in complete disrepair. Walking in the front door was like traveling back into the 1960s.
I don’t think he really wanted to be on hospice. I think he did it because that’s what his wife wanted.
”How is he doing?” I asked her.
”Oh, I don’t think he’s doing very well, but I better stay out of it.” She replied.
I performed my assessment. I asked if he had pain. He said yes. I offered medications. He said no. It went on like this for the first 2 weeks. We spent most of our visits watching TV. It was either a Royals game or poker on ESPN. Always sports. After a few weeks we started making commentary on what we were watching. Nothing deep or specific. Just a couple guys watching TV. I can still hear his voice in my head. He sounded like Lewis from Christmas Vacation when he was telling Bethany to “say the blessing.”
”Who do you think is going to win?” I would ask.
”I don’t know, James. This is some really bad baseball.” He would respond.
After a couple months he started agreeing to my suggestions. I’d spend the first 30 minutes just watching ESPN with him. At some point I would start with my assessment. He was getting weaker, and I think he knew it. One day I asked him if I could get something delivered to truly address his pain.
”Whatever you say, James.” Became his response.
Each visit I would address something new, and his response became standard.
”Whatever you say, James.”
”Your blood pressure is getting low. I think we need to decrease your medicine.”
”Whatever you say, James.”
“I think you need to take your pain medicine twice a day.”
”Whatever you say, James.”
One day his wife caught me on the front step of their home before I went in. She told me that he had fallen several times since my last visit. She explained that, since his last fall, she had been pushing him around the house on his seated walker.
”Don’t let him know I told you. He would be so embarrassed.”
I sat down next to him. His color was different. He was so pale.
”You don’t look so good, my friend.”
”I don’t feel so good.” He replied.
”Listen, let me get you a hospital bed in here. That way you can relax while we watch ESPN together.”
”Whatever you say, James.”
I had the hospital bed delivered that evening, but it just sat there the rest of the week. The following week I got a call from his wife.
”You better come early this week, James. I can’t get him out of his chair. He’s been in it all day.”
I shuffled some visits around and made my way to their house. He was very drowsy, and I knew we were getting close to the end. I walked over to him and sat down.
”How are you feeling today?”
”Not very good, James.”
“Can I help you get into bed?”
“Whatever you say, James.”
I helped him get into his wheelchair and pushed him over to the hospital bed set up in his living room. I lifted him into the bed and helped him get situated. His wife smiled at me in approval.
He died later that week.
Hospice is a heart job. I think sometimes we complicate things. Not everyone wants deep and complicated medical care. Not everyone wants a complex assessment with lots of big words and fancy solutions. Sometimes, our patients just want to feel normal.
Earl was really sick, and he knew he was sick. He didn’t want a nurse who was also his friend. He wanted a friend who was also a nurse. For Earl, friendship had to come first. I joined in on what he found important, and that gave me influence with him. I built trust, and he needed to trust someone before he would let them help him.
Eventually, I was able to give him and his wife what they needed through hospice care. I just needed to be patient and find out what Earl needed from me first.
I became the friend Earl wanted, so I could become the nurse he needed.
Tell me why I teared up?! That was great dad! I think you’re a great leader because your observant. It’s easy to get caught up in the job and loose sight of why we do this job.
You feared up because you are a natural caregiver. What you do is very important! You bring value to your patients’ lives!
What upi do is so important. O wish you could have been my moms hospice nurse.
Aw, that is really sweet of you to say!
I think you very much have the right on this, James. My youngest brother died of cancer in 1999 at age 49. He first got cancer in 1977. His wife had just given birth to their second son, and my brother’s prayer was that he would be able to see them grow up, which he did. He went to the hospital and got good care and so forth. Eventually, they said he was cured, but cancer always comes back. A year or two before he passed, it returned, and he went through all of that chemo and such a second time.
Eventually, he got to where he knew he was not going to make it and just could not bear any more treatment in a hospital. They learned about Hospice, and that was what they chose for his final days. He knew absolutely that he was dying. He just didn’t want to have to keep on throwing up with the chemo, knowing that it was no longer of any use.
So, what did he want from Hospice? Just something to relieve the pain and someone to help him make as dignified an exit as possible. If he had wanted the latest miracle medicines and so forth, he would have stayed in the hospital.
But I’ll say this. My family has always been eternally grateful for that lady from Hospice. She made things as good for my brother as she possibly could. And she gave him back his dignity.
I always enjoy your input on my posts. Especially since you are on the outside looking in. Your experiences with hospice and your opinions provide so much value.
Brother you are a great writer. You brought me back to so many relationships. Thanks for sharing so eloquently. You make me miss the work
You’ll be back when the timing is right.
Thank you james for your writing. I can feel how you sincerely care and want us to stay in this job. I was in the middle of contemplating if quiting hospice, then I came upon a link to your blog that someone shared on Fb. This piece reminded me why I fell in love with hospice to the point that I think this is my life purpose. You were right about that hero complexs too.
Due to the pandemic, my hospice are doing more of a online/phone/videocall assessment, visitation are not as frequent .I feel that the connection that we have with patient is lesser (sometimes it feel like it is purely a clinical assestment without much of the close/connected feeling we usually have when doing physical visit). How can I improve on this?
( sorry for my english, it is not my 1st language)
Video visits make it almost impossible to build the relationships we need with our hospice patients. So much is lost. It is our relationships with our patients that gives us the best chance to really be able to help them. I hope this ends for you soon, so you can do your job the way it is meant to be done.