Your are reading Part 11 of my series, “What to expect from your hospice nurse.” To gain full perspective, I encourage you to start from the beginning by visiting the series landing page HERE.
in the world of hospice care, there really are very few expectations on the patient. I think that is one of the reasons I love bing a hospice nurse. Hospice is very patient centric. For the most part, whatever the patient wants, the patient gets.
Hospitals are pushy. They don’t have much of a choice. Insurance companies are calling the shots. The patient is expected to only have so many days for whatever procedure or illness.
I can’t sit here and tell you I know everything about hospitals and insurance. Still, I’ve been in medicine for most of my life, and I can tell you that there is plenty of pressure to get people in and out of the hospital as quickly as possible.
All of that goes away when you enter hospice care. At least, it should all go away. If you are anywhere near me it does go away, because I don’t believe in it.
This is your story
I love hospice because it’s all about the patient. You, as the hospice patient, don’t have to do anything you don’t want to do.
Isn’t that freeing? Aren’t you fed up with being told what to do by doctors and nurses? Aren’t you ready to just live the way you want to live?
If you have a terminal disease, and you’ve done everything possible to extend your life, don’t you want the last few months of your life to be the way you want?
Do you want healthcare that is dedicated to your comfort based on what you find important?
At its very core, that is what hospice is supposed to be. If you are on hospice care, the only thing that can be expected of you is that you allow your RN Case Manager visit you and complete a comprehensive assessment weekly. Technically you don’t have to see your hospice nurse more often than every 14 days, but that can be a hardship on the hospice agency. Let’s not do that. Otherwise, it’s your show!
Your hospice nurse should never argue with you
Nurses like to fix things. It is what we are taught in nursing school. Find a problem and fix it. Even if the patient doesn’t want it fixed, fix it anyway.
Because of this, we get pushy. Sometimes, unfortunately, we will get pushy and try to impose our will upon our patients. We don’t mean to do it.
Don’t be afraid to have things your way. If you want every unpleasant feeling reduced and controlled, then that is what you should get. If you are into all natural, and you want to refuse all controlled medications, then make sure to tell your nurse.
If your nurse can’t seem to understand that you want things a certain way, don’t be afraid to contact the agency office and request a replacement. It isn’t rude or mean. Some nurses and patients just can’t figure things out. It has happened to all hospice nurses.
Your nurse is not the hero in your story
Okay, I’ve explained this in my podcast and during a previous hospice related series on this website.
Many nurses (I’m the worst) have a hero complex. How can we not have a hero complex? Over the last three years (COVID-19) that’s all we have been told. Yay first responders! We are special!
Well, I think first responders are special, but when it comes to your hospice experience, we are not the hero in your story.
Your caregiver is the hero in your story. As I mentioned in part 4 of this series, you will have a family member or friend who will be by your side when you take your last breath. As important as your hospice nurse is, nobody is more important than your caregiver.
Your caregiver will go through the gauntlet with you. He or she will do the exhausting work of caring for a dying person. It is a monumental task, and only death itself is more grueling.
I was recently reminded of my place in a hospice patient’s story
I was working the weekend on call. I had been at the patient’s side several times over the weekend to help manage symptoms and assist family. During my last visit, I noticed the patient starting to breathe shallowly. I stood up and got the attention of the daughter in the room.
“Is his breathing becoming more shallow?” I asked.
“Yes,” was her reply. “Should I go and get my sister?”
“Yes I think so,” I replied.
Everyone came into the room. I was standing at the foot of the bed. As the room filled up, one of the daughters motioned everyone to give me some room. This instantly felt uncomfortable to be.
“This isn’t about me,” I thought to myself.
I quickly moved away from the bed and motioned for everyone else to get in close to the patient. They stood by his side as he took his final breaths. I could not even see his face, so I could know when he passed , and it didn’t matter. I would do my part to get the time of death once everyone was ready to do so. It didn’t matter the exact time he passed from this world to the next.
What was important is that his family could all be close to him and take in the moment. I had no business being accommodated during such an emotional and intimate moment.
Hospice is about you and your family
As I draw this series to a close, I want you to understand that hospice is about you. Hospice is about what you want the last days, weeks or months of your life to look like.
Hospice exists to help you navigate this time, but as I have mentioned before, this is your experience. This is your care plan. This means that hospice is supposed to respect and honor your wishes no matter what they might look like. It doesn’t even matter if your hospice nurse agrees with your decisions.
At the end of your life, I want you to choose hospice to be there to help you, and your family, navigate the most difficult event you will ever face.
Ultimately this is your story, and it is up to hospice to make sure your story ends the way you want it to end. I hope this series has helped you understand what to expect from your hospice nurse and the agency she represents.
