Your are reading Part 6 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.

A few years ago I took over a patient from another nurse. As we were discussing his case, the daughter explained to me how she handled medication refills with the previous nurse.

“I visit my dad on Saturday mornings. I fill his pill box for him. When I run out of medications, I will take a picture of the bottle and send it to you so you can get it refilled.”

I gave her the same answer I give other patients, and family members, when they let me know they will be trying to contact me on the weekends.

“I will see your text message when I return to work on Monday, and will let you know I got your message. I turn my phone off after hours.”

She was in total shock.

“The other nurse would reply on the weekends and answer any questions that I have.”

I let her know this would not be the case with me. She was very upset that I would not be available anytime she needed me. We eventually got everything worked out.

This is a common problem in hospice. Today we are going to discuss a very serious issue that exists in hospice.

Your nurse should have boundaries

Many nurses struggle with maintaining their boundaries. We got into this work because of our compassion. We tend to be very relational, and we take this work very personally. If something happens outside of our control, we can quickly start to blame ourselves.

I still remember my first week in orientation back in 2015. I was blessed to start out with an amazing mentor. His name was Mike, and we remain friends today.

I’ll never forget when I said to him, “I want to do the death visit for every one of my patients.”

I still remember what he said.

“James, you don’t realize what you are saying. You will be taking care of a lot of dying people. You won’t have the hours in your life to attend every death.”

Mike was so correct. Over these last 8 years I have cared for hundreds of dying patients. There is no way I could have done the death visit for all of them. I would have to trade in all of my personal life. I would have burned out so quickly.

Since then, I have made boundaries a very high priority in my career. In general, I do pretty well.

Your nurse is not the only nurse

Hospice is a 24/7/365 service. This means that hospice is required to have nurses available around the clock.

Smaller agencies will require their case managers to pick up after-hours shifts, and larger agencies will have an entirely separate team of nurses who will handle all after hours needs.

For someone who has never had a hospice experience, this might seem kind of obvious. For a hospice patient, or their caregiver, this concept can find its way to the back of their brain quite quickly. It’s especially forgettable if they have been on hospice care for a while, and they have never needed any after hours help. They can easily get tunnel vision and only see their hospice care as services provided by their nurse and the hospice aide who helps with the bathing.

As the patient’s health declines, and new symptoms make an arrival, it’s almost instinct to try and contact your nurse even if it is 11pm in the middle of the week.

For the nurse who doesn’t seem to understand the importance of turning off her phone once the day is complete, there will be late calls from the patient or their caregiver looking for quick answers. In the moment, the patient can feel like they are the only person in the world. They don’t even think twice about sending a text message or trying to make a phone call to their nurse during weird hours.

The very best thing your nurse case manager can do is have her phone off after working hours. It will force you to look elsewhere for the help you need. It should lead you to call the hospice office. You will then be directed to after-hours help. The after-hours nurse is best equipped to help you during a crisis when the office is closed.

How does hospice work after hours?

Now that we have determined that your nurse needs her private life, let’s discuss how after-hours needs are handled. After-hours help is provided by RNs and LPN/LVNs. Not all agencies handle on-call the same.

For example, the agency I work for now has an answering service that receives the call for help. They will take your name and number and page a triage nurse to call back. This triage nurse does not make visits. She will just try to help solve the problem over the phone. If she is unable to solve the problem, she will call the visit nurse and send her out.

Some agencies may skip the answering service and the triage nurse. The phone call may go straight to one nurse who will try to help over the phone or just make a visit herself.

I think it’s just important for you to understand that, in general, most hospice agencies don’t have a bunch of nurses sitting round with nothing to do. No agency can afford to do that and remain in business. Medicare just doesn’t pay enough to staff that way.

Medicare just requires hospice providers to be able to make a visit within one hour when it has been determined that you need a nurse visit.

You should never expect hospice to respond as quickly to your needs as calling 911. It’s just not a reasonable expectation.

I do want you to understand something important about calling hospice after hours. If you believe you need a nurse to visit, then you should feel the freedom to state that need directly.

Nurses are human, and sometimes we are tired. That means that we will sometimes try to solve something over the phone that actually needs a visit. Please be patient, but also be direct. If you think you need a nurse to visit, and you feel like that need is being ignored, just state directly that you want a nurse to visit immediately. Most agencies will accommodate you.

Let’s land the “boundary” plane

Okay, to round out this part of our series, I want to just hit some bullet points when it comes to boundaries, and what is the most healthy behavior.

1. No money should be exchanged. You’ll be tempted to give your nurse gifts or even money during special occasions or holidays. Please don’t do this. It’s awkward, and could really lead down some bad roads. Your nurse could start to feel like they owe you something in return. I’ve been there. It can become horribly uncomfortable over time. Someone could feel like they are owed something. Let’s just not do it, okay? If you want to do something special for your nurse, send a note of gratitude to their organization. This means more than you could ever imagine. Words of encouragement go much further than gifts or money.
2. Your nurse should have her phone off except during business hours. The only exception is if she is taking an on-call shift. Even then she should ignore any phone calls or text messages that do not come from the office. You need to be trained on how to handle your after-hours needs. Your nurse should totally ignore you after 5pm and before 8am Monday-Friday. She needs her down time.
3. Your nurse should not be eating your food or drinking your beverages. I know it’s tempting to want to provide your nurse with these kinds of extras. It’s just not appropriate, and it can serve to blur the professional and personal lines. You may give your nurse water if she looks like she’s about to need hospice herself. Other than that, please refrain from feeding hospice staff. Think of us like a stray cat. If you feed us too much, we might stick around longer than you wish. 😉
4. Don’t expect your nurse to come to the funeral. Okay, so this rule is not a hard-and-fast rule. Some nurses do choose to attend funerals and memorial services. Other nurses choose not to attend these activities. You may feel the desire to invite your nurse to memorial services and funerals. In the event your nurse does not attend, please do not take it personal. I believe that we all have a limited amount of ourselves to give away. We should all consider the cost of getting tool involved in our patient’s and family’s lives.

Hospice is emotional for everyone. Your nurse got into this work because of her deep seeded love and compassion for others. She is ultimately responsible for her professional boundaries. I hope this article has helped you understand how challenging maintaining boundaries can actually be.

Please don’t forget that there is plenty of help available to you, and you should never be afraid to get help from the hospice organization when you need it. Please avoid the idea that only your hospice nurse has the skills and abilities to help you. Your hospice nurse isn’t alone, and she has a lot of team members who can also help meet your needs.

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James

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.