"It must be so depressing,” is often the first comment, followed by, “Oh, you must be special because it has to be really hard.” The first time I heard those comments, I was actually taken aback, but these are often the first things you hear when you tell someone that you work in palliative or hospice care.

I don’t work in palliative care any more, but I had the privilege of doing so, part-time, for almost five years. It wasn’t depressing and it wasn’t “really hard.” In fact, it was the most rewarding nursing I’ve ever done.

Nursing school

In nursing school, we’re taught how to help people as they recover from their illnesses, injuries, or surgeries. Death is discussed, most often in terms of us trying to avoid it, but there is some learning on how to deal with dying patients and their family members. More schools are introducing a palliative care and hospice component to their nursing curriculum. But, it is really only recently that palliative and hospice care is coming into its own as a specialty that nurses want to work in.

Why?

Often, the question asked is “why?” Why would someone want to work in palliative/hospice care? To me, it’s very simple. It’s a completely different type of nursing than what we’re used to in the hospitals. We know that these people are dying and that they will die, sooner than later. Our goal isn’t to prolong their life, but to help them live their life as comfortably as is possible in their remaining time.

It used to be that people just waited to die, but with modern medicine and know-how, we can help make those final days comfortable enough for many for them to enjoy them.  They can visit with family members and friends, they can tie up loose ends, they can laugh and cry, they can take the time to say good-bye to those they love.

Hiding death

When I was a student – and later working on the floors – I came across many situations where dying patients weren’t told they were dying. In fact, often the patients would ask outright, only to be told, “No, you’re not dying” by their family members. They had decided it was best for the patient not to know.

Even back when I was 20 and not all that experienced, I knew that was wrong. It was wrong to rob someone of the opportunity to end their life in a way that they could finish what they could finish. I would often say, how lonely must it be to be dying, and know that the people around you are lying to you and won’t talk about it. I say that because, in my heart, I truly believe that the vast majority of dying people know that they are dying, even if they are told that it isn’t so. I can’t imagine what it must be like to be denied that honesty right up to the end.

Palliative and hospice care allow for that honesty. It allows us, as nurses, to help the patients do what it is they need to do. We provide to them the most intimate of care possible – what is more intimate than being there to listen to them, to talk to them, to care for them, in their final days?

The reward

The reward to palliative care comes out throughout the time we have with our patients. When they can move from one stage to another, when they can ask for help and get it, when they can talk openly about what they want and what they can do. And, in the end, we know we’ve our job when we know that the passing has been as pain-free as is possible, when the families have had a chance to say good-bye, and when we can turn around and give the same care to the next patient who needs us.

By Marijke Vroomen-Durning

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