James worked on-and-off as an LPN for over 20 years. In 2014 he completed a bridge program and became an RN. James became a hospice nurse in January 2015. He lives in the Kansas City area with his wife of over 30 years, 4 daughters and 2 sons in law.
What does it mean when a preacher says, “In closing?”
Absolutely nothing!
What does it mean when a blogger says, “In closing?”
About the same!
In Closing
What I originally thought would be 12-15 articles appears to be 10 articles. Many of my ideas have been combined in more than one article. It has played out well, and it has generated some quality conversations both public and private. I appreciate everyone who has take then time to follow this series to its end. I especially appreciate all the feedback I have received. Some of it has been negative, and some of it has been positive. I welcome both responses when given politely, which is what I feel has happened in most cases. I have learned a lot just writing this series. I hope you have as well.
Today, I want to finish this series with a couple straggling thoughts. Just some simple observations that I feel will bookend this series, but don’t really warrant additional articles.
1. Help each other
I had not even considered this as a subject until yesterday. I had just spent the previous 10 days on a much needed vacation. I have spent most of the last year carrying a caseload and training new nurses. We intentionally go overboard when training new staff. Most new nurses with us get 2-4 weeks of in-the-field training with me.
Well, I had completely forgotten one of my nurses had vacation starting this Wednesday through next Wednesday. She called to let me know that she had already reach out to her follow case managers for help. All of her visits were already covered. My role calls for me to pick up the slack, and she only needs me to make 2 visits while she’s out. All of her teammates had already picked up the needed visits.
Not all nurses have this kind of support. I have worked with more than one nurse who just wanted to get done with their day and head home. There was no interest in checking with their coworkers to see if they need help. This is the most impressive group of nurses I have ever worked with. A couple of them are very new to hospice, and yet they are still reaching out to me on slow days to see who they can help.
They have developed a culture that says, “Why should I go home at 2pm when I have a teammate who may not get done till late tonight. They reach out to each other to see what help they can provide. What a healthy culture to be a part of!
If you are struggling to get help, I would recommend you find another nurse in your organization who is willing to team up with you and be your backup. Maybe the two of you can be the change in your company you want to see. Others will follow your lead. I promise. I have watched it happen here in my own company.
2. The 90/10 rule
This is something I really should have shared at the beginning of this series. I have two classes I teach at my current place of employment. At some point in each one I share this rule.
I believe that the content of this series can be executed successfully at least 90 percent of the time. There will always be the unplanned and unexpected 10 percent. Those who see the world of hospice as 100 percent one way or the other are doomed to struggle. This includes your humble servant, James. I have to remember that my material doesn’t work 100 percent of the time for 100 percent of nurses.
It’s also not the 10/90 rule that says all this material can only be done 10 percent of the time. If you want to argue 80/20 with me, I can entertain that. What is most important is our ability to examine our own ideas objectively. If you want to fiercely object to something in these articles, then I have achieved my goal. I have got you to think it all over. That’s progress! That’s good for you and me!
So, before just rejecting any of this series, ask yourself if what I suggest can be done at least 80-90 percent of the time. Maybe it will help you! Why not try it?
Most of what I teach is based on my own experience. By its very nature this means that I am biased. All of these articles can really be boiled down to just my opinion. It’s not like there is some kind of comprehensive hospice nurse textbook that a reader can just pull out to verify my claims.
What I do know is what I have done to survive six-and-a-half years of hospice working for (an embarrassing) 5 companies. I have just now found my forever hospice home. I’ve never been so happy to do this work as I am right here and right now.
Have you found your forever hospice home?
Are you with a company that you love, but it just seems impossible to get everything done and still have a personal life? Are you willing to get out a calendar right now, look forward 6 months and place an “X” on that date. Are you willing to say to yourself, “For the next six months, starting tomorrow, I’m going to put my full effort into this entire series. I’m not going to pressure myself to do it all at 100 percent. I’m going to shoot for 90 percent and see what happens.”
I think you will find this series has the potential to completely change your level of success in the specialty of hospice nursing. You wouldn’t even be reading this series if you didn’t hold out some amount of hope that you can be successful at hospice without constant fatigue and stress.
Don’t let your current habits or situation be the end of your hospice career. Try something completely different, and maybe this can be a new beginning for you. You can avoid hospice burnout, and this series can help you get there.
I have spent more time contemplating this article than all the others in this series combined. I have even considered skipping this section of the series completely. After much thought, I have decided to include this subject before closing the series.
If you feel like you are in the throws of hospice burnout, then this article may be more pertinent to you than any of the others in this series.
Is it time for you to leave hospice?
I don’t desire for anyone to leave hospice. This specialty is absolutely desperate for high-quality nurses. It’s hard work. Maybe the hardest in all of medicine. I haven’t worked them all, but I have experienced enough other specialties to see the unique challenges that come with caring for the dying.
My first job out of nursing school included some ER work. I really expected to love it. I thought I would enjoy the action and adventure I heard so many nurses rave about. One evening we had someone come in who attempted to complete suicide. He had cut his arms from elbow to wrist with a blade. he didn’t even come close to death, but he had long cuts on both of his arms that needed to be sewed up. I stood by his bed as I watched one of the ER physicians repair his wounds. I got light headed and almost passed out. I learned real quickly that any type of nursing that involved sutures and stitching was not going to be for me. It made me nauseous. Over the years I found other areas of nursing that were a better fit. Ultimately I landed here in hospice care.
Below I have come up with a series of questions you should ask yourself in determining if you should continue with hospice as a profession, and find a better fit for yourself.
1. Am I waiting for hospice to become easier?
Waiting for hospice work to get easier is an exercise in futility. Difficult patients, family members and caregivers are all a part of hospice work. If I wake up each day asking myself, “Maybe today will be much easier,” my expectations are unrealistic. There is always a challenging situation awaiting our intervention. There will always be difficult symptoms to manage. There will always be patients who either challenge our ability to remain calm or become almost like family and leave a hole in our lives when they die.
If the only reason you are still working in hospice is anticipation of this work getting easier, it may be time to change specialty.
2. Am I unwilling to work an 8 hour day?
This work cannot generally be done working less than a full day. We need to be willing to arrive at our first visit by start of day and leave our last visit at end of day. Business hours vary among organizations. They tend to be 8.5 hours and start at 8:00am and end at 4:30pm. Not every work day needs to be this strict, but if we develop a routine that has us showing up to our first visit at 9am or 10am and trying to end our day by 3pm we are setting ourselves up for frustration.
No other area of nursing allows its staff to just wander in and out whenever they feel like it. Just because we can start our day late and leave early doesn’t mean we should. This is a recipe for lots of working from home. What takes you 10 minutes out in the field will take you 30 minutes at home.
If you are unwilling or unable to get out of your home timely, it might be time to change specialty.
3. Do I struggle with autonomy?
The autonomy that comes with hospice nursing may be one of the biggest reasons it draws in staff. It may be the same way with home health. It’s nice to be able to swing by the grocery store in the middle of the day and grab something for dinner. You can stop in and have lunch with your kindergartener as well.
The difficult side of autonomy is that there isn’t someone in the back seat of your car reminding you of the work you still need to get done for the day. A quick stop at a big box store can turn into an hour or two of the day lost real quick. Nobody is calling at you from the garage reminding you to get out the door by 7:30am so you can be to your first patient by 8am. You only have the still small voice in your head, and we are all great at shutting that voice down.
There is very little direct supervision in hospice. Many hours of the day can be lost or mismanaged easily resulting in a lot of work that goes unfinished. Management is plenty busy getting their work done. They aren’t calling all day long to make sure patients are being seen timely.
If you struggle with managing all the time away from supervision, it might be time to change specialty.
4. Am I unwilling to turn off my work phone?
When we are off work, we need to turn off our work phone. Leaving our work phone on is a recipe for constant reminders of the work we do. As many times as we remind our patients and caregivers that we don’t work after hours, they still cannot resist the temptation to send us notes or trying to call during our off hours. We end up answering those calls and messages, and we end up trading in our personal time by working for free. We have on-call services for a reason. The only way we can get our patients and caregivers to become dependent on the whole team, is to be sure we cannot be reached after hours.
If you struggle with the “not knowing” part of being a hospice nurse, it might be time to change specialty.
5. Am I unwilling to learn to chart at the bedside?
Cal it what you want. The general idea is your charting for patient A is done before you see patient B. All my charting happens while I am with my patients. Nobody calls me rude or says anything about it.
I addressed this issue in depth during Part 2 of this series. If you have been reading this series as I have been releasing each article, you should be making progress in this area. If you continue to do a lot of charting at home in the evenings, I highly encourage you to read Part 2 again and get working on this.
There is absolutely no reason for you to spend your evenings charting. No reason at all. None. Zero. Zilch.
Don’t chart at home. Ever. Have I been clear?
If you have decided charting at the bedside is not appropriate or impossible, it might be time to change specialty.
6. Do I have to always be right?
Our medical brains are full of very useful information. The unfortunate reality is that not all patients and caregivers want to access that information. Many of them have their own thoughts and ideas on what is best medically. As frustrating as it is to see them choose WebMD over hospice best practice, we have to be willing to accept that not all of our advice will be implemented.
When we push and push we just find ourselves in constant conflict with patients and their caregivers. We cause ourselves and our clients undue and unneeded stress and anxiety. We go home frustrated because we feel unsuccessful from the day. That one difficult patient wears on our mind. We spend countless hours away from work trying to figure out how to convince them to start or stop certain behaviors.
If you just can’t handle watching others make bad decisions, it might be time to change specialty.
7. Do I have to fix every problem?
In general, hospice professionals operate in very imperfect environments. Our patients are dehydrated and malnourished. Often they are bed bound, or they have severe dementia. They have wounds, shortness of air and pain. There can be fighting among family members in our very presence. Sometimes everyone wants our help with these problems, and sometimes they just want to handle it all themselves.
We are in homes with bugs, cigarette smoke so thick you can hardly see and spoiled trash in the corners. At times it can overwhelm the mind and the senses. The patient or family may point out just one problem that is important to them. We look around and see ten problems that need to be solved. Maybe the one problem they want fixed is something that cannot be fixed. Now we are struggling with helping the family come to terms with the dramatic changes they see in the one they love more than anything on this earth.
We have to come to terms with the realization that we can’t fix everything. This is end of life care. Our patients’ bodies and minds are failing them.
If you find yourself having really long visits and getting caught up in family drama, it mightI be time to change specialty.
Organizations do contribute to burnout. I have mentioned it a few times during this series. Generally speaking, I believe organizations play a small part in hospice burnout. Much of what causes burnout can be found in bad behaviors and practices by staff. The short list above is my own observation of the biggest contributors. You have to master all of the above to make it.
Still, there are bad organizations or offices out there. Maybe the company philosophy of care is just too much on the staff. Maybe they have caseloads or travel times just too high.
I am limited in my ability to assist you with finding the right organization. I only know my region and how hospice care is delivered here. We have more than one organization in this area that pushes staff too far.
I can only offer this simple advice.
Don’t leave hospice before making sure it is you, and not the organization you are working for. Start by having a good one-on-one conversation with your direct supervisor. Ask lots of questions. Treat the meeting like you are interviewing the company to make sure they are worthy of your continued involvement in the organization.
Don’t stay with an organization or specialty that makes you miserable. Life is too short.
My dad has had a long year. He suffered a freak accident a few months ago that resulted in an 8 week hospitalization and rehab. After being home for a few weeks he went back with a bad infection. Only just this week has his home health finally ended. We very easily could have lost him.
A few weeks ago my dad asked me to go to a Royals baseball game with him. I loved the idea, but the week that he asked was one of the busiest I have had all year. I completely forgot about the request. The following weekend I watched as three families lost their fathers. As I looked at the report, I was reminded of the gravity of what I do every day. I provide care and comfort while sons and daughters lose their dads. I reached out to my dad, and we scheduled a ballgame.
We planned the night very simply. We decided to arrive right as the game was starting. We didn’t expect to have the stamina to make it through the whole game if we got there too early. We left his house at about 6:30pm. I wanted him to have door-to-door service so I picked him up in my new car. I kind of wanted to show off. He hadn’t ridden in it yet.
Just to show off, I floored it as we got onto I-70. We may have gone over the speed limit just a little. It set the tone for the whole night. The rule breaking was in full swing. We were not to be denied! I broke the speed limit as we merged into traffic in my Chrysler 300 with window tinting that just might not be legal. We got to the stadium safe and sound. I’m not crazy you know.
We arrived just as the national anthem was being sung. We stood at attention outside the gates with everyone else. We were blessed to get a parking spot nice and close as well. Upon entry we decided to sit somewhere different than the tickets we purchased. The first spot we picked was a little too loud for our liking, so we moved to a quieter spot.
Nobody questioned our spot. We had done it! We were actually sitting in seats we didn’t pay for. It was invigorating! For two men who are generally rule obsessed, this was a big deal! We enjoyed a night of baseball. We got to see Salvador Perez hit his 47th home run of the season. We jumped up with the rest of the crowd and demanded a curtain call. Salvy obliged his adoring fans!
My dad had a bag of peanuts. I was just thankful to have my dad.
When we got to the seventh inning, it was starting to thin out a little. In a stroke of genius we decided to move even closer. Go big or go home was our battle cry! We marched down even closer and found a great spot that appeared to be abandoned.
We sat down to enjoy our new seats. Within about two minutes an usher came by and noticed us.
“Do you have tickets for these seats?” She asked.
In a moment of absolute defiance I replied, “No ma’am.”
”Okay, well, you need to move back to the seats you paid for.” She replied with a smile on her face.
Without complaint we promptly got up and moved to the seats we were previously sitting in and hadn’t actually paid for. We had a chuckle together and finished the game. We stayed for every moment of action as we watched our team win.
It’s real easy to take for granted the things we have until we don’t have them anymore. It’s really easy to do this with family. We just kind of assume they will always be with us. We all know this isn’t true, but I think we forget to act on it at times. What I do for a living can be a very sobering reminder of the frailty of life. It felt good to spend an evening with my dad watching a game we both love.
We are already making plans to catch some Sporting KC Soccer this fall. Maybe we can even find a few rules to break there too.
Today we will discuss the most important thing in hospice. We are going to address what can possibly be the biggest cause of burnout among all hospice staff. Nobody can escape this dilemma. No matter what role you have in hospice, today’s subject will affect you. This is by far the biggest challenge. This can make hospice amazing or absolutely miserable.
Today we discuss our coworkers.
Workplace Conflict
This series cannot reach completion without discussing the relationship hospice professionals have with each other. This work is incredibly stressful. Working in hospice forces medical professionals to work with patients and families at the peak of their vulnerability. We are providing medical care while death is invading their lives. They are going to lose someone close to them forever. The sheer gravity of the situation has the ability to overwhelm anyone.
Something as simple as running out of disposable diapers can become a crisis. Someone is getting a phone call, and the person on the other end may be angry because the nurse forgot to leave supplies. To the hospice professional, this may seem trivial. To the family member, it means a late night trip to the store to purchase something hospice was supposed to provide. Now they have to find someone to sit with their loved one while they make a run to the store. It is even more likely that the after-hours nurse will have to make an emergent delivery and get an earful while they are there. They will spend thirty minutes taking the blame from someone they have never even met. If you are an on-call nurse, you have experienced this more than once.
This is just one simple example of how difficult this work can be. We can NEVER blame the family when we don’t meet their expectations. Doing so will heap more stress on them. As a result, we end up taking it out on our teammates. The stress of this work has to find an outlet. Unfortunately, it often results in conflict between hospice professionals. We feel pressure to lay blame, and we turn on each other.
1. Assume Positive Intent
A lot can be found online regarding this topic. Rather than regurgitate what I have read elsewhere, I will address this based on my own experience. This is something I have witnessed throughout my hospice career.
So, what does it mean to “assume positive intent?” It means to assume the other person’s intentions are honest. It is to assume your teammate has everyone’s best interest in mind.
This sounds easy enough, but it really is not very easy at all. We all bring our personal experiences to work with us. We have all had bad experiences in the past with relationships. We have been lied to, or we have been cheated on. We have watched coworkers at previous jobs steal from the company, or make up all kinds of fake excuses for their behaviors. We drag these experiences from one job to the other, and it causes us to judge our current coworkers based on previous experiences.
This is especially true when a decision impacts us in a negative way. It is easy to assume the move was made to intentionally cause us harm. We also tend to judge someone else’s mistakes differently than we judge our own mistakes. We can explain our own mistakes away because we know our intentions.
The next time one of your coworkers does something that confuses you or impacts your happiness, assume positive intent before calling them up to tell them how you feel about their decision. Chances are they really weren’t trying to make your life harder.
2. Listen – Validate – Communicate
Conflict is inevitable when dealing with people. It will find its way into our relationships at work. Let me share with you a strategy I have been using for years to help deescalate conflict. I use this in every area of my life. I use it with family, friends, my children, coworkers and patients.
Listen: I start by making sure the other person is heard. Sometimes, I’ll just ask, “Are you okay” to start the conversation. Most people just want someone to listen and understand where they are coming from. The more they are able to explain the situation, the more they will calm down. As we listen to them, we also begin to understand what is at the core of the problem.
Validate: Once I have listened well, I will validate their fears and concerns. This shows the other person they have been heard. Most of the time I am able to really connect with the other person after I have heard all their concerns. Listening well also may change my own perception of the situation. I can also learn how someone thinks or what causes them distress. That is valuable information to understand the person behind the frustration.
Communicate: After having listened and validated, this is my opportunity to share my own feelings or thoughts. For patients, I educate. For staff, this is my chance to work towards a resolution. I have found most people are a lot more receptive if we save the rules and correction for the end of the conversation.
The next time you find yourself in conflict with a coworker, would you consider trying this strategy? I think you will find some amazing success. You may even discover the two of you aren’t as far apart as it seems.
3. The Speed of Trust
A few years ago I read the amazing book, “The Speed of Trust.” The main theme of the book explains that the more you are able to trust those around you, the faster the work will get done. If you struggle to trust your teammates, you may want to pick up this book. Also, if you are not very trustworthy, you should pick up this book.
It hurts my soul to watch two people, whom I believe love this work, fight with each other. I catch myself trying to find ways to help them see how awesome the other person is. I’m not very sneaky, so everyone knows what I’m up to. I’ll say to myself, “I can’t believe these two people are fighting. They are both so awesome! They both love our patients. They both want to provide amazing care for our patients. Why are they fighting like this?”
I observe how miserable they both are due to being so untrusting of the other person. I watch this mistrust turn into a cancer between two amazing people. We should all be working towards building a culture of trust inside of our businesses. We can’t spend time pointing at everyone else. True change starts with us. Let’s all be the change we want to see in others. Let’s trust early and often.
4. Getting Burned
I’m a naturally trusting person. I spend most of my day assuming the people around me are working hard and being honest. I realize this is very high risk on my part. I have paid the price in the past for being overly trusting. I have found myself working harder and longer because I was assuming things that just were not true.
I refuse to become jaded and change my strategy. I watch others who are looking for work-place conspiracy under every bedpan, and I will just not live this way. If I get burned, I can still sleep well at night.
I have never been a very good desk jockey. Even when I was a hospice administrator, I found ways to help in the field and still see patients. One day I was out seeing a patient for one of my nurses. After the visit I called her to provide an update. When she answered I could hear her doing the dishes. I was out seeing one of her patients because she was so swamped for the day, and she’s at home!
The weight of this type of behavior is on that nurse. It is never my fault because someone was dishonest with me. It’s not my fault because I opened myself up to being treated poorly. The weight of bad behavior is on the person who is misbehaving.
5. Gossip is Poison
This section can be nice and short. If you like to talk about everyone to everyone, you are poisonous to your organization. If you run around and complain about your company to your peers, you are poisonous to your organization. Pot stirrers have no place in hospice. Complaining should always go up the ladder. It should never go down or laterally. You know it’s being done wrong if the person you are complaining to is powerless to make the changes you desire.
Hospice is a very complex and stressful area of medicine. Our most valuable resource is our teammates. Every one of use has a specific purpose and has equal value. There may be hierarchy in a technical sense, but not in a practical sense. All members of the team should be treated with equal respect and equal value. The home health aide is not “just an aide.” The office manager is not “just a secretary.” We all have to work together in unison for our patients to get the absolute best care possible.
Let’s be the kind of professionals who contribute to a healthy work environment. We can only do this by being intentional about how we conduct ourselves and how we interact with those around us. Let’s trust each other every chance we get. Let’s be willing to sit down with those we struggle to understand. Let’s assume everyone has the same goals for our patients. Let’s stop the gossip and negative talk. Let’s all take ownership of our company, and be the change we want to see in others.
The first time I met Melvin he was sitting at his dining rom table putting together a puzzle.
”Hi Melvin, my name is James.”
He didn’t look up at me or acknowledge my presence.
“He can’t hear you.” His wife explained.
I raised my voice significantly to announce myself. “Hi Melvin, my name is James. how are you doing?”
”James, he can’t hear anything.” She explained. “He’s totally deaf.”
She touched him on the shoulder, and he looked up at us. He smiled at me, and then he smiled at her. He reached up with his hand and caressed her face for a few seconds. He smiled at her, gave her a kiss on the opposite cheek from his hand, and then he returned to his puzzle.
Melvin didn’t start out his life as a deaf man. He just experienced comlete hearing loss as he aged. Over the 2-3 month period of time that I was his nurse, I never heard him say a single word. Every visit was the same. I would perform my assessment, and ask his wife all the questions. He was always engaged in some activity. He would look at me and just smile.
I learned a lot about Melvin from his wife. They had only been married a few years. She told me stories about his travels around the world. He had visited almost every continent. He had been in most of the major cities in Europe. According to his wife, he had even scaled Mount Everest. Most of this had happened before they ever got married. I don’t honestly remember what he actually did for a living. I think he was a college professor or something of the sort.
Most hospice patients end up on some type of symptom management medication as the end of life nears. Usually it’s more than one medication. We have medications for pain, shortness of air, anxiety, hallucinations, nausea and vomiting. Most patients end up on several medications at end of life. Most commonly they end up on something for pain and hallucinations. Melvin sticks out in my mind because he took almost no medications while he was dying.
I remember visiting one day, and he was lying in his hospital bed. His wife was sitting at the head of his bed holding his hand. He was looking up at her with his usual smile. He was cupping her cheek in his hand.
”How has he been acting?” I asked.
“He hasn’t eaten or drank anything since yesterday morning.” She said.
Sitting next to her I asked. ”He doesn’t appear to be in any distress to me. What do you think?”
She looked at him and looked at me.
”He’s never had any chronic pain issues, and he seems to understand what is happening.”
“What is happening?” I asked her.
”He’s dying, and I think he knows it.”
I visited them every day that week. Every visit was exactly the same. She would be sitting at the head of his bed, and he would be holding her face with his hand. He had the same simple smile on his face. Most visits I would see him pull her close and give her a soft kiss on the opposite cheek he was touching. There was never a sound from him. Not a moan, or a groan. No coughing or attempts to speak any words. Just a smile and a kiss.
I remember the day he died. I had received an email from our secretary, Kay. It was a simple email like all of her emails.
“Please call Joanne, she is pretty sure Melvin has passed.”
I replied “Okay” to her email like I always did. After calling Joanne, I drove over to their house. She let me in and lead me to the living room where he was lying. I put my stethascope on his chest and listed for a heartbeat. There was none. I looked at my watch and gave the time of death to her.
While we waited for the funeral home to get there, we talked about the last 24 hours.
“James, it was the strangest thing. Every couple hours he would wake up, look at me, smile, lift his head, give me a kiss on the cheek and lie back down. All night long it was the same. Every couple hours. Wake up. Smile. Kiss on the cheek. Lie back down. Right before I called your office, he did the exact same thing, but this final time, he stopped breathing after the kiss.”
I have never seen anything like it since that day. I have never had a patient who remained that lucid until their final breath. Most patients are unresponsive for days leading up to the end. Not Melvin. He was awake till almost the last minute.
Melvin had a lot of adventures over his lifetime. He had been everywhere, and he had seen everything. When he was close to the end, the only thing that mattered to him was Joanne. He couldn’t communicate with his voice, because he couldn’t hear. What he could do was communicate with his face and hands.
At the end of his life Melvin made sure Joanne knew exactly how he felt about her. A touch and a kiss was all she needed to understand.
Over the last year I have learned that, not only am I passionate about taking great care of hospice patients, but I have developed a strong passion to help nurses avoid burnout when doing this work.
To every hospice nurse reading this blog I say to you, “I believe in you! You can do this! You can be a great hospice nurse, take excellent care of your patients and still have great work/life balance.” I believe this with all my heart, and I have dedicated this blog to helping you get there.
There are two major themes throughout this series that I believe are paramount to avoiding burnout. Those themes are maintaining work/life balance and using bedside charting to help accomplish this. I believe both of these items are essential in avoiding burnout.
Failure is a great instructor
Last Monday, before I went to bed, I had my Tuesday completely planned out. I knew what time I needed to make my first visit, and I knew what time I needed to arrive at my last visit. I had five visits on my plate, and there would be a lot of driving.
I got up Tuesday morning like usual. I had my coffee and turned on my work phone just like I usually do. I discovered that my last visit of the day really wanted me to be there an hour earlier than we had planned. Rather than maintaining healthy boundaries, I agreed to move up the visit. Due to this change, I also decided to move a visit from Wednesday to Tuesday. Now I had 6 visits, but I was convinced this was a great idea.
My clinical director even offered to get someone to see one of my visits. I was almost indignant! I remember messaging her and explaining that I could get this done on my own, and I even mentioned I just wanted the mileage back home anyway.
By the end of the day I had pulled it all off. I was done by five-thirty and all charting was completed. It was a thing of beauty, but I wasn’t done there. In a stroke of absolute bafoonery, I took my schedule from the day and posted it on the nurses support group I am a member of on Facebook.
I was proud! Let the accolades begin. Now everyone can see how 6 visits can be done in a single day, and all charting done as well. This will convince even more nurses to read my blog and get the help they need! And everyone will think I’m awesome!
Okay, I do get delusions of grandeur at times. Anyway, here is what I posted for all to see.
My schedule today and charting.
6 patients who will be known as 1-6 All Charting completed at the bedside.
Patient 1 – 8:00am – 8:45am (no new orders) Travel 43 miles Patient 2 – 9:30am – 10:30am (Actively dying) Travel 30 miles Patient 3 – 11:15am – 12:00pm (pillbox) Travel 0 (same building) Patient 4 – 12:00pm – 1:00pm (pillbox) Travel 25 miles Patient 5 – 1:30pm – 2:30pm (new orders) Travel 23 miles Patient 6 – 3:00pm – 4:00pm (no new orders)
Drive 5 miles to where my daughter works to pick her up since her car is in the shop. She gets off at 5:30pm.
Worked from 4:00pm-5:30pm to do Recert notes on patients 5 and 6 above. Also completed IDT notes on 3 patients for a nurse who is out sick.
Start nice and early. Chart at the bedside. Be intentional!
You may be reading this so far thinking, “Okay, what’s the big deal, James? This looks like amazing time-management skills to me?”
Maybe instead you’re thinking, “Geez, that just seems very impersonal. And who lives like that? This guy didn’t take any breaks or even eat lunch!”
This pretty much sums up many of the responses I got on facebook. After over 100 comments and twice as many reactions, I began to wonder if I achieved my intended goal. I even remember seeing a couple members say, “This isn’t an example to follow.”
Now, in a group that big, there will be a wide variety of responses. I should not take anything too personal. I got plenty of positive responses and accolades. I probably shouldn’t take the negative feedback to personal. The thing is, I’m just not wired that way. I easily take everything personally. It’s just who I am and how I’m made.
To help clear things up, I started to reach out to a few people whose opinion I trust and know their feedback will be honest no matter how much it might hurt.
So, with this in mind, I started with my administrator. She will tell it straight.
”James, you came across as a little arrogant and kind of like a showoff.”
Well, that felt good, but she was right. I was showing off a little.
Next I decided to message another member of the group who had contacted me a while back. She had thanked me for this series. She is an administrator as well.
”I think people do need a break but that’s how I do it. I started early and charted at bedside. But maybe 9.5 hrs is too much.”
She was totally right. In my excitement to share my day, I never even bothered to look at my schedule objectively. It was 9.5 hours of constant movement. No stops to take lunch. No stops to catch my breath. I completely did it to myself, and I was proud of it.
I have been doing this to the nurses I have been training as well. In fact, I’ve developed a reputation of not taking bathroom breaks or stopping for lunch.
Here I am trying to write an entire series on work/life balance, and I can’t even stop long enough to let someone riding with me to eat or get a bathroom break.
The second administrator also said something else to me that gave me pause.
“Those yellows and greens hate it…reds and blues love it.”
I had no clue what she was talking about. After some web searches I discovered she was referencing personality types.
As I looked over the 4 personality types, and her point sunk in. The green and yellow personality types are more emotional about their activities, while the blue and red are more analytical.
I have always viewed hospice through a more psychosocial standpoint. I love the relationship building part of the services that hospice provides. I have an entire training program built around the psychosocial needs of hospice patients and caregivers. I almost yelled out loud, “I’m not red or blue! I’m yellow and green!”
The fact is it takes all 4 colors to be successful in hospice. It’s when we try to live in any individual color that we get into trouble.
For an entire day I operated in red and green only. Good care at 100 miles per hour. I traveled Kansas City from East to North to back East to South, and then back East again. I took no breaks. I didn’t stop to eat. I went non-stop for 9.5 hours. My patients got good care, but I didn’t. Then I posted my spectacular achievement on Facebook for all the world to see.
They big takeaway from this experience? We all have to work our way to the center of the color wheel above. We need to do it right. We need to do it now. We need to do it in a caring way. We need to do it together.
When we depend on a certain color, or fail to see the value in all the colors, that is when we get lost, and we find ourselves working towards burnout.
In light of this new information, here are some questions we should ask ourselves every day.
1. Am I operating in a caring way?
None of us would be in this work if we didn’t feel like we operate in a caring way. We still need to make sure our visits are patient centric. All of my visits on Tuesday were forty-five minutes to one hour long. I believe I was caring towards my patients. It could have easily become something else. I just got lucky.
2. Am I allowing others to help me?
My supervisor tried to get me some help. I declined that help. I should not have needed help at all. If you remember from above, one of the visits I imposed on myself. I could have easily left that visit for the following day.
Do any of you find yourself doing this same thing? I did six visits on Tuesday, and only 2 visits on Wednesday. I made Tuesday hard on myself for no reason whatsoever.
3. Am I doing it right?
This is imperative. There are right and wrong ways to do this work. As much as compliance can be boring and tedious, we still have rules and regulations to follow. There is best practice for visit frequencies and end of life care. We have deadlines for payroll and documentation. Leadership has expectations of us, and we have to step up to meet the challenge.
4. Am I doing it now?
Much of the debate in the nurses group had to do with how many hours I worked on Tuesday. There was some legitimate concern. I worked 9.5 hours without a real break. Do 9.5 hour days happen to us sometimes? Yes they do! Should we do them to ourselves? No we should not!
I did this to myself! I added a visit that didn’t need to be added. Then I ignored pleads from my team to help me. We all need to be smart enough to move visits around to make our days easier, not harder.
I will stand by one of my decisions from that day: I was at my first visit by start of day.
Whatever your company’s business hours are, that is the time you should be at the office or your fist visit. If you worked at a clinic from 8:00-4:30 daily, you wouldn’t wait till 8:00am to leave your home. You would leave your home early enough to be at work by your scheduled start time. Nobody gets paid for their commute to work. It’s the same in Hospice. I didn’t somehow work ten or eleven hours because I left my house early enough to be at my first visit by start of the business day. Even if my first patient was an hour from my house, I would leave early enough to see them by start of business day. That’s what “do it now really means.” Starting early is huge in hospice. Our day can get away from us quickly. We can’t be running out of our house at 9:00am in the morning and expect to have a successful day. Especially if we are going to mismanage our schedule the way I did on Tuesday.
Let’s end this weeks post by engaging in some self reflection.
As you review the color wheel above, do you find yourself operating in one color more than the other three?
Do you often find yourself ignoring the yellow color and trying to do everything yourself?
Are you so obsessed with compliance, that you forget about the heart of what hospice is all about?
Are you in a big rush like I was last Tuesday, and you forget to take care of yourself?
Are your visits all about the relationship you have with your patients, and you neglect charting and collaboration with your teammates?
The hardest thing any of us will ever do is engage the person in the mirror. I was forced to do some self reflection this week. I hope you will join me in the experience. I believe it will serve you as well as it has me.
This week we will address a topic that I get the most questions about. Charting at the bedside is most important thing, and maintaining boundaries is the second most important. This week’s issue can easily find itself in third place on the burnout scale.
Visit Times
I see a lot of debate among hospice providers regarding the subject of visit times. I will address this based on our organizational philosophy and strategy. I do believe we have the best understanding of this, but I may be a little biased.
Let’s address a few things before I get into the details. This cause of burnout generally happens with the most passionate nurses. Super passionate nurses tend to get “stuck” in a lot of visits. They are there for 2-3 hours. Nurses who perform “drive-by” visits don’t generally have issues here. They are in and out of the home in 20-30 minutes. If you are one of those “drive-by” visitors, please stay tuned. I can help you here. You should go back and read Part 2 right now to help you start doing this hospice thing a little more appropriately. You’ll be glad you did.
1. See all your patients at least twice a week
Does it seem strange to start this article with this piece of advice? What does visit frequency have to do with how long a visit takes? I’m glad you asked! The more you know about your patient, the easier your visits will become. I’m amazed at the amount of nurses I have worked with who will change a patient to one time per week after the first visit. They look at the patient and say to themselves, “Well, she looks okay. She’s not in a crisis, and she’s not transitioning yet. I’ll just change her to once a week, and when she gets worse, I’ll increase my visits.”
This is a guaranteed way to have lots of really long visits down the road. When we see a patient once a week, we completely miss those little changes. We get caught off guard when we show up after not seeing someone for a whole week, and now they are in a state of transition. Many times the family is completely oblivious to the changes that have happened in the last week. The nurse is stuck there for an extended period of time trying to fill in all the blanks.
If you are reading this, and most of your caseload is only being seen once a week, you need to change it today!
2. Understand the two types of visits/assessments
There are two types of case manager assessments in hospice. There is the comprehensive assessment and the focused assessment. Simply put, one assessment is a review of the whole person, and the other assessment is more of a follow-up assessment on immediate needs.
So let’s combine point 1 and point 2 from above.
Make your first visit of the week your comprehensive assessment. The second visit of the week is the more focused and simple assessment. My first visit of the week almost always takes an hour. Since I chart at the bedside 100% of the time, the comprehensive assessment does take a while. I also complete my HHA and LPN supervisory visit during that first visit each week.
This creates a situation where Thursday and Friday visits are completed in quick order. You have already addressed anything that happened over the weekend, so now it’s a quick follow-up visit for each patient. These visits are easily 30 minutes or less including charting.
Quick Tip: If my patient is actively dying, I will save the comprehensive assessment for the end of the week. The patient is likely to pass before the end of the week, and I can spend my visit educating and supporting the family.
3. Bring the calm with you
No matter how bad things look, be the calmest one in the room. I cannot express this enough.
A few years ago I received a call from one of my nurses, and she was in a panic. We will call her Jennifer. Jennifer was working an on-call shift, and we had an admission. Our patient was being discharged from a local hospital, and they were going to call us once she arrived home. The family called Jennifer in a panic. The patient was discharged earlier than planned, and none of the equipment had arrived yet. She was on oxygen, and she was bed bound. The family was distraught. Jennifer arrived to find EMS in the house with the patient on the gurney in the living room.
”James, this is a mess! The family is so angry with us! This lady is on the gurney and there is nowhere to put her! She can’t even go into a chair, because the oxygen isn’t here! What do I do?”
”Jennifer, I need you to take a few deep breaths for me, please. Do not get caught up in the emotion of the moment. Be the calm in the room. You are the nurse. You got this.”
“Okay, James, what do I do now?”
”Walk over to the medics and thank them for waiting like this. Call the equipment company from inside the house and see where the equipment is. You want the family to see you do this. You need to show them that you have this well in hand, and you are on the job.”
She followed my instructions, and the equipment was only 30 minutes away. EMS was more than happy to just hang out for a few extra minutes while they all waited together.
This was a completely new situation for Jennifer. Honestly, it was new for all of us. This is a rarity in hospice. Hospitals generally never discharge patients early. Usually the equipment is in the house for hours before the patient arrives. We had everything scheduled out perfectly. The hospital just discharged early.
Even if we are coming apart on the inside, the family and patient need to have the impression that we are cool, calm and collected.
4. Avoid power struggles
This may be the greatest piece of advice I received in my first two years as a hospice nurse. We nurses are fix-it machines. We find problems, and we fix the problems we find. If a patient or family member wants to get in the way we end up spending extra time trying to convince them of our preferred solution.
All we end up doing is spending more time in the home, and we drive a wedge between ourselves and the patient.
Quick Tip: If it is important to the patient, it is important to you. If it is not important to the patient, it is not important to you.
This quick tip applies to EVERYTHING once you walk in the door of the house. If it looks like the patient is crazy uncomfortable, but the family tells you they don’t want mom to get anything, and they say she is going to die a “natural death.” It’s your job to find out what they do want from you and accomplish that.
As long as grandma isn’t being physically abused, there is no reason to impose our will on patients and their families. It is not a violation of someone’s constitutional rights if they get no drugs at end of life. They can huff and puff themselves right through the pearly gates if that is what the family wants. We are not here to change someone’s belief systems.
5. No triangles
We recently experienced this with one of our patients. The DPOA lived out of town, and she was trying to direct care. She wanted us to use all the comfort meds to keep her mom from experiencing distress. Unfortunately, there were multiple family members locally who did not share the same opinions. Even though the DPOA has the legal authority, these family members were not about to let us give any medications.
One of my nurses got stuck at the house for hours while the family fought and argued over the medications. My nurse was trying to support the DPOA, but the longer she was there, the more heated things became. Not because of anything she was doing.
We cannot resolve decades of disfunction in the middle of a crisis. It is perfectly acceptable to call the room to order, remind them of the medications that are available and how to use them. We can then announce that we are leaving, and they can reach out to use with assistance if needed.
We are hospice nurses, not family therapists. It’s okay to abandon them to their own dysfunction.
6. Don’t invent problems
There are no perfect patients, families or environments. Houses have mold. Mice are in the attic. Beds have bugs. People lack hygiene. Family members get all their info from WebMD or some neighbor who doesn’t trust doctors. People feed food to dying family members.
We don’t need to find and fix every problem in the house. We don’t need to spend hours convincing family members that gramma ins’t comfortable enough. If they think she’s comfortable, she’s comfortable.
Even if we are just supply and medication dealers, get them what they want and move on.
7. Know your patient
This relates directly to point 1 above. Nurses who see their patients a lot have a deeper knowledge of what to expect when death is near.
Not everyone dies the same. Not all symptoms are the same for all patients. Not all needs are the same for all patients. Hospice is individualized care. Nobody lives the same. Nobody dies the same.
Recently I was case managing a patient with end stage COPD. Pursed lip breathing was her normal. Her respirations were always around 25-28 per minute. She denied shortness of air all the time when I visited her. She would take some lorazepam every now and then to help her relax. This was her normal.
I kept in close contact with her daughter as her health declined. Her daughter started providing 24 hour care about 2 days before she died.
There is this idea among hospice nurses that respirations at end of life should be less than 22-25 breaths per minute. Anything above 22 breaths per minute is a sign of discomfort or pain. While this may be the case for some patients, it is not the case for all patients. Can you imagine what I would have had to give this patient if I wanted to get her to breathe only 22 breaths a minute when she hasn’t breathed like that in years? I would have spent hours trying to give copious amounts of medications.
This is a great way to have long visits that accomplish nothing. I helped this daughter understand what she was seeing is very normal for her mom, and this will be her “comfortable.” I was able to have very normal visits that lasted about an hour while this patient was actively dying. I did not spend hours trying to manage a symptom that was already normal.
8. Chart at the bedside
I’ll keep this short. Everyone reading this series knows how passionate I am about bedside charting. I’ll never understand how a nurse can be in a visit for 1-2 hours and have no charting done. Seems to be that someone has wasted waiting.
You can really use bedside charting to end a visit. Get that device out, and start smacking down on those keys. This will really help wind down your visit. The room will get quiet. Bedside charting can send this big message that you are wrapping things up by getting your documentation done.
Nothing sends a stronger message that the visit is over than closing up your laptop/tablet, placing it in your bag and standing up to make your exit.
Visit times is a very complex subject. I’m sure I could write on this for many more hours. There are so many variables that can contribute to visits that just last too long. Long visits here and there are perfectly normal. Challenging symptoms and diverse family dynamics play a large role in dragging out visits.
Don’t be afraid to take control of the room, calm everyone down, and help bring focus to the situation. If focus cannot be established due to poor family dynamics, abandon them to their own devices and head to a patient who really wants your help. You’ll be glad you did.
Late Edit 8/31/21
I decided to add to this article details from my Tuesday following the original release. This is my attempt to give my readers a glimpse into one of my days. I hope it helps you!
My schedule today and charting.
6 patients who will be known as 1-6 All Charting completed at the bedside.
Patient 1 – 8:00am – 8:45am (no new orders) Travel 43 miles to Patient 2 Patient 2 – 9:30am – 10:30am (Actively dying) Travel 30 miles to Patient 3 Patient 3 – 11:15am – 12:00pm (pillbox) Travel 0 (same building) Patient 4 – 12:00pm – 1:00pm (pillbox) Travel 25 miles to Patient 5 Patient 5 – 1:30pm – 2:30pm (new orders) Travel 23 miles to Patient 6 Patient 6 – 3:00pm – 4:00pm (no new orders)
Drive 5 miles to where my daughter works to pick her up since her car is in the shop. She gets off at 5:30pm.
Worked from 4:00pm-5:30pm to do Recert notes on patients 5 and 6 above. Also completed IDT notes on 3 patients for a nurse who is out sick.
Start nice and early. Chart at the bedside. Be intentional!
I can’t reminisce about the Kansas City Royals winning the 2015 World Series without remembering Randy.
He was only about 10 years older than me. He was a tall strong looking man. He had severe respiratory disease, and he couldn’t walk 10 feet without becoming so short of air he had to sit down. Even during conversation he couldn’t complete full sentences without stopping half way to catch his breath. Our visits always took place at the dining room table. He had a pill box that I kept filled up for him.
The Kansas City Royals were making their second trip to the World Series. They had a heart-breaking loss to the San Francisco Giants. The name of the Giant’s pitcher who beat us is banned across the region. The mere mention of his name could cause a fist fight between the closest of friends.
Randy and I managed to watch most of the series with the Astros together. We would scream and yell at the screen in unison. When the Royals were down 6-2 in the bottom of the 7th in game 4, we were in the middle of a joint visit with the social worker. We turned the game off in frustration to resume our meeting. We knew the season was over.
About 10 minutes later I pulled out my phone and checked Twitter. I’m a socially challenged rule breaker like that. I was shocked to see that the royals had the bases loaded with no outs! I stood up and crashed the meeting. I looked at the social worker and said, “I’m really sorry to end the meeting so soon, but the Royals are in the middle of an epic comeback!” The social worker laughed out loud, and we turned the TV back on. Randy and I watched as the Royals performed one of the greatest comebacks in franchise playoff history! Ultimately, we celebrated Kansas City’s second world championship in 30 years.
Over the next couple of months Randy’s health continued to decline. During one of my visits his girlfriend was out of the house.
”James, please make sure that I don’t end up on a ventilator again.”
Before Randy came on hospice he had a horrific hospitalization. He was on a ventilator for over a week. It was a miracle he ever came off the device.
“James, being on a ventilator was a traumatic experience for me. I don’t ever want to experience that again. I just want you to keep me comfortable. I want to stay right here at home for the end of my life.”
“Does Amy know this is what you want”?”
”Yes, I have told her many times, but I worry she will panic at the end.”
”Okay, I promise to help her remember when the time comes.”
It wasn’t too may weeks later that I got a message from the office to call Amy. The message said that Randy was having a hard time breathing, and Amy wanted me to go and check on him.
I walked into the house and Randy was sitting in his favorite recliner. He was leaning forward with elbows on his knees; A common position for people who struggle to breathe. He was very lethargic and was barely able to make eye contact. I called our equipment company and had a hospital bed delivered STAT. While we waited for the bed, I administered a high dose of medication to help him relax.
After the bed was setup, I helped Randy get in. Since that day I have helped do this many times. When someone looks this sick, I know they will never got out of bed under their own power again.
Randy’s girlfriend watched from across the room while all this was taking place. She was calm. She was too calm. I could tell she didn’t have full understanding of what was happening. She thought this would be temporary.
“Amy, come over here and sit down with me?”
She sat on the sofa with me. Next to us was the hospital bed with Randy in it. I put her hands in mine and looked her in the eyes.
”Amy, his lungs are failing him. He is going to die in the next few days.”
She stood up in shock!
”What? No! James, he can’t die! We need to call 911 right now!”
”Amy, hold on a second.” I said calmly. “Sit back down with me.”
She reluctantly complied.
”Randy has discussed this with you, hasn’t he?”
She paused for a minute trying to clear her thoughts.
”Yes, we talked about it.” She finally answered.
”What did he tell you was his wishes after he was on the ventilator last time?”
”He told me he never wanted to experience that again.”
”Amy, if we call 911 right now. They will come and get him and take him back to the hospital. He will end up on a ventilator again. Is that what he wants?”
”No, he doesn’t want that.”
”Okay, he has made this decision for you. He has taken this situation out of your hands. Now it is your job to make sure his wishes are honored. You have the power to grant this wish for him. Keep him here, at home, where he wants to be. Don’t let him wake up at the hospital with tubes in him. It is not what he wants.”
She felt empowered. This gave her a sense of purpose in this sad situation. She was going to lose the man she loved, but she was also going to be his guardian till the end.
I really try to keep these articles short enough to be read in 3-5 minutes. My readers are busy, and they work a lot of hours. Today’s subject will challenge my desire for brief yet helpful material. I can bloviate with the best of them. In college I was able to take the simplest of subjects and write page after page of (mostly boring) material. Simply put, I am an expert on my own opinion, and I like sharing it with anyone who will listen.
Boundaries
Only charting at the bedside stands above boundaries when it comes to the big challenges for hospice nurses. A lack of maintaining healthy boundaries with patients and caregivers will destroy a hospice nurse.
1. Turn off your phone
Recently I decided to address this with all my staff. I called the meeting to order, and I instructed everyone to hand me their name badges. I promised everyone they were not getting fired. Then I looked at everyone with a big grin on my face and said, “Okay, you are all now unemployed.” After a few seconds of awkward silence I continued.
”We happen to have two openings here at Interim. Actually, we have six openings now that none of you work here. We have five RNCM openings and one on-call opening.”
I told everyone in the room I was going to offer them a job, and there better not be any surprises with the answers. I then grabbed a name badge one-by-one from the pile and started calling out names.
”Mike, which position do you want? RNCM or on-call nurse?”
Mike: “Case manager please.”
”Jennifer, which position do you want? RNCM or on-call nurse?”
Jennifer: “Case manager please.”
I continued this way until all five positions were refilled. We had a good laugh at how absurd the whole thing was, but my point was made with a little humor. I then addressed the issues we had been having with our cell phones. I’m going to have the same talk with my readers now.
On call exists for a reason. It is there to provide relief to the staff. Regardless of how your organization is set up, there are times you are supposed to be off work. Your work phone should be turned off within an hour of the end of your shift, and an hour prior to the beginning of your shift. Our patients or their caregivers should not expect to be able to reach us around the clock.
”James, can I get your cell phone number so I can call you if I need something?”
”I can give you my number, but please understand I work 8:30am-5:00pm and you will need to call our main number outside of those hours for urgent needs. I will get your messages, but I can’t guarantee you how quickly I can return your call.”
Even when I’m on call, I do not answer patient calls or texts after hours. This is an important boundary I have set for myself. Patients calling me directly also circumvents the system. Their issues and concerns after hours do get logged into the system as an on-call need.
We have to train ourselves to be really good at this boundary. Do whatever it takes. If your company won’t give you a phone, get a cheap pay-as-you-go phone from walmart. Download the Google Voice app and use it for a second number on your phone. Do something. Do anything. Just don’t turn yourself into a 24 hour resource for your patients. It’s not healthy for you and your personal life. It trains our patients and caregivers to rely on just one person. It’s also against Part 3 of this series.
2. Read something that will help with boundaries
A few years ago I discovered this amazing, and short, book by Andy Stanley. It’s an important reminder on the importance of family over work. You can also check out something my wife told me a few weeks ago. Go back and read Part 3 of this series. Are you becoming too much of the centerpiece for your patients? Consider this fantastic book by Henry Cloud and John Townsend on the subject of boundaries.
3. Don’t have favorites
Now this is super hard. We all have patients we enjoy over others. It’s human nature. We have those patients who we feel like we can relax around them. Maybe we have something in common with them. I personally love my military men. My father-in-law is a Vietnam combat Marine veteran. I feel a deep sense of responsibility when I find out one of my patients served in the armed forces.
Becoming too invested emotionally with our patients can have dire consequences. Our visits start to get too long. We start trying to do things beyond the real reason we are there. We are cleaning the bathroom, or joining the family for meals. We are doing grocery shopping, or picking up snacks on our way over to the house.
We are not there to replace family and friends. We will move through their lives over a period of a few short months, and then we are gone. Eventually, we may not even remember their names. This is a harsh truth of what we do.
We are representatives of the federal government. What we do at each visit is actually regulated by CMS. We need to ask ourselves this question: “What is Medicare paying me to do here?” This will help us clarify what our goal is for each visit. This doesn’t mean we can’t enjoy our patients. This doesn’t mean they can’t enjoy us. It means we are constantly aware of our place and how much of ourselves we are giving away.
We must provide equal and same care to all of our patients regardless of where they live, how cute they are, how clean they are or how nice they are.
4. Hospice is not about me
I have to remind myself of this all the time. This is the patient’s care plan, not mine. These visits aren’t about me. I can fall into this trap so easily. I love to be fun. I want to entertain everyone. In another life, I would love to be a stand-up comedian. I can generally get any room laughing. I have the kind of personality that wants to take over a room the minute I walk in. I want to be close friends with everyone. If I find out someone doesn’t like me, I’m flabbergasted.
“What? They don’t like me? That’s crazy! Everyone likes me. Just come and hang out with me for a few minutes. You will like me. I promise. Something is wrong with that lady. She doesn’t seem to like me.”
Hospice is not about us. Not ever. It’s about someone’s mom or dad or brother or sister who is in the last months of their lives. We should not interject ourselves in a way that we become the center point of the experience. We are one member of a larger organization with the singular goal of providing end-of-life care. This isn’t a chance for us to gain a new friend. This isn’t a chance for us to find a new mentor. This isn’t a chance for us to prove ourselves. This is a chance for us to bring the gift of hospice to the community.
Be friendly. Be encouraging. Be uplifting. Be fun if that is what your patient wants. Smile when they smile. Cry when they cry. Talk about sports, or the weather. Find things in common. All of these are fun and enjoyable, but when it moves to the point that we are starting to be treated as immediate family, it is time to take a step back and reconsider the situation.
We do not want to get so close to our patients and families, that when we are no longer there, more loss is experienced. Eventually we will have to pull ourselves away. When we do, the connection should not be so strong that someone gets hurt. That someone could be us, and that will contribute to hospice burnout.
When I first got into hospice, I really thought I would have memory of every patient I cared for. I was so excited to work in hospice that I told my mentor during orientation I would want to attend the death of all my patients day or night. He smiled at me and explained how impossible that would be. I didn’t realize how many people I would care for.
I have been in hospice for just under 7 years. I can say, without fear of contradiction, I have cared for hundreds of dying people. It is impossible to remember everyone. The sheer numbers alone make it difficult. Still, some patients remain a part of my memory forever.
I will never forget Angie. She lived in a rural area of Kansas City in her daughter’s basement. Every time I would visit she would be pulled up to her computer reading Facebook. She was almost completely blind, so she used a large TV screen for her monitor, and everything was blown up to about 200 percent. She would look at the screen from about 6 inches away. Any time I visited she would just wave me into the room without making eye contact.
”I’m working on FarmVille, James. I’ll be right with you.”
I would just sit by her hospital bed and wait patiently. Eventually, she would push herself away, apologize and let me perform my assessment. She was a cute little short lady with heart failure. Over the next several months her health continued to decline. She was not a candidate for any type of aggressive care. We addressed any out-of-control symptoms as they would arise. I would call her cardiologist and get new orders to treat extra fluid and chest pain.
It is normal for all hospice patients to begin to lose their appetite. The body is slowly failing, and the desire for food begins to subside. As the caloric intake declines, weakness and lethargy take over. This isn’t painful at all. It is a normal part of the dying process. Eventually, everyone becomes too weak to get out of bed. Angie was no different.
One day I made a visit and, for the first time, she was not sitting in front of FarmVille. She was lying in her hospital bed. Her daughter was sitting in the other half of the room as I sat down next to Angie’s bed.
”I’m too tired to get out of bed, James.”
”I know.” Was all I could get out.
I sat there in the quiet for a few minutes. I could tell her daughter knew things were getting closer to the end. She understood.
I looked back at Angie and said, “Your heart is failing you.”
She looked back at me and said, “You mean I’m not going to make it?”
I got goosebumps. I looked at her daughter. Her daughter looked back at me and gave the slightest nod.
I looked back at Angie and managed to say, “No, you are not going to make it.”
Angie cried.
After a few minutes, she gathered herself. I pointed to a ledge on the basement wall where she had at least a dozen Bible based figurines. She had the entire Christmas Nativity set up on the wall. I looked at Angie and asked her what I was looking at.
”That is Jesus, Mary and Joseph. I also have some of the saints up there. Peter is there and so is James and John.”
”So, do you believe you will go be with Jesus when this life is over?”
”Yes, I get to go be with him.”
“Will it help you to think of them every day when you wake up?”
”Yes it will help a lot, James.”
Her daughter looked at me in approval. Over the next few weeks Angie moved from this world to the next. With every visit we looked at her figurines on the wall and discussed what awaited her. Eventually, she went home to be with her Savior, Jesus.
I will never forget Angie.
I remember her, because she was the first person I ever told they were going to die.
