The Meaning of Hospice

At the end of October, I had an elderly woman who was truly ready to go to hospice. She had been accepted and was just waiting on a bed to open up. After years with her cancer, treatments no longer worked and physicians had nothing more to offer.

I had her for two consecutive nights and one of her sons never left her side. It was obvious that he had his mother's best interests in mind and no matter what she needed, every single time, he just said "Anything for Mama," and did whatever it was. The combination of all the treatments she had been through and being an older person in general made her very weak. She was barely able to move. She was incontinent but could tell us when she needed to be changed and her son helped me re-position her, slowly, because it hurt her to move.

I left to go home in the morning, being told the hospice center had a bed and would be taking her later that day. Overall, I was relieved. Her son made one comment to me toward the end of my shift about how he was hoping to get her out of hospice very soon but I thought that either the physicians or the hospice center would explain to him the goal of hospice.

I returned a few days ago to find a familiar name in my assignment. I knew who it was immediately but I was puzzled as to why she was still here.

I went in the room early on and that same son was with her. He asked me to help change her, so I did, and then started my rounds on my other patients.

A little later, she needed to be changed again. This time, her other children were there. My tech and I started cleaning her up. Suddenly, her other son began screaming that we were too rough, cursing at us and ordered us to leave the room. When a patient hurts just to move at all, there isn't much you can do about that but I can see how a distraught family member may not see it that way.

When the evening quieted down, I asked my charge nurse what happened with hospice. I looked through the previous documentation. Apparently, she had been doing quite well from the palliative chemotherapy they were giving her in hospice and her children took her out of hospice and back to the hospital.

Cancer is hard on the body. Chemotherapy and radiation are hard on the body. Sometimes it works and patients leave cancer-free and that's amazing. But sometimes the cancer spreads. Sometimes the treatments don't work or stop working. In this woman's case and many others, we know what the outcome will be and the only thing left to determine is how and when it reaches that point.

It's incredibly difficult watching someone you love die in front of you. Even when that person is in hospice care being kept comfortable, you may not understand. You might feel that hospice is cruelly starving your loved one when in reality, it's difficult for many patients who qualify for hospice to eat and they're usually getting some kind of drip so as not to feel the hunger. It's important to understand that hospice is not a step in between hospital and going home. Your loved one is dying, likely from something very painful. Even as a nurse, I can't imagine seeing a loved one in hospice wouldn't elicit some very powerful emotions. I'd want this person to stay with me as long as possible. I wouldn't think it's fair that they're dying, not now, not from "this," whatever "this" may be. But it's important to try your best to take yourself out of the equation. Your loved one probably doesn't want to leave you, either, and also may not think it's fair that they're dying now and from "this." They don't want to suffer as much as you don't want them to suffer, which is why it's so important for family members to understand hospice.

The fact is that this person is dying. It can't be stopped. The best that we can do is let the person die comfortably and with dignity. As healthcare providers, we truly do want to do what we think is best for your loved one, and what's best for you, too. But your loved one comes first. If you don't understand why we are doing whatever we may be doing or why we think your loved one should go to hospice or what will happen there, ask us!

Yes, as a nurse I've had thousands of patients. But please don't think even for a moment that I don't care what happens to your loved one. I became a nurse because I WANTED to care about all of these people and each and every one of my patients matters to me.

On Death and Dying - The Distraught Niece

Recently, I've had a few patients pass away on my shift. We are not a hospice unit; the majority of our patents are admitted for some kind of neurological issue. But we do get other types of patients on occasions. This is one of them.

All of our patients have some kind of order set put in by their physicians. They dictate the frequency and type of vital signs to be taken, when and what labs are to be drawn and what the patient is allowed to eat, if anything. There are other orders, but these are the most common ones.

All patients are required to have a code status, which is perhaps the most important one. At any moment, a patient could stop breathing and we need to know what to do. If we have no information, the default is full code and all appropriate interventions are used as necessary. This may include CPR, oxygen therapy (intubation or an external mask), medications, etc.

For patients who want no interventions in the event that they stop breathing, our facility uses AND - Allow Natural Death. A more common term used at many other facilities is DNR - Do Not Resuscitate, but the meaning is the same.

The first of these patients came to our unit from the ICU as AND. She was elderly and non-responsive. The orders for her were comfort care only. This means that, among other things, no vital signs are ordered. Many times, as was the case for this patient, pain assessments were ordered at regular intervals and a constant morphine drip was running. When she arrived, the charge nurse, tech and I went into the room to set her up but unlike other patients, there wasn't much to do. We set her up comfortably in the bed and left her to rest.

The charge nurse didn't say it, but he didn't have to - take care of the patient and let him know when it was over.

There were no family members in the room for most of her time there so my hourly rounding was uneventful. The patient arrived with a breathing pattern that is called Kussmaul. It describes a breathing pattern that is one sign that death is near. It's a shallow kind of breathing that sometimes will skip a breath. You learn about it in nursing school and it's hard to describe but when you finally hear it, it's very distinct and you know what it is.

Eventually, some family did arrive. Her niece came along with her husband. The niece was in tears over the bedside, while her husband stood a foot or so away from the bedside and calmly introduce himself to me. I left the room and not half an hour later, I was told there was an emergency in that room.

Now the only irregular breathing pattern belonged to my patient's niece. In tears, she asked me if I was absolutely sure there was no pulse. As a nurse, I'm not allowed to pronounce someone dead; that responsibility belongs to the physician. At her request, I hooked up a vital signs machine. The error messages on the screen seemed both comforting and frightening to this woman.

The physician arrived and shortly thereafter told the family she had passed. He asked me to do an EKG (also known as an ECG - electrocardiogram. EKG is its German abbreviation and is sometimes used to differentiate it from similar-sounding procedures like EEGs). The print-out showed the expected straight lines where a heartbeat would have been a few hours ago. Was an EKG necessary? In theory, no, absolutely not. There was not even the slightest indication that this woman might be alive.

But one thing they often fail to address in school is that you don't have just one patient. If there are family members or friends at the bedside - they are just as much your patients. This niece needed that visual to give her some closure.

For her, yes, the EKG was absolutely necessary.