Hospice nurse reveals openly what can make a drawn-out death “chaotic”

• Julie McFadden regularly shares insights about hospice on social media
• In a new video, she discussed the uglier side of things in the days before death
• “Death can be chaotic and perhaps not so beautiful,” she described

A hospice nurse has spoken openly about the things that can make a drawn-out death so “messy” – from chronic pain to mental confusion and other forms of “suffering.”

Julie McFadden of Los Angeles, known on social media as Hospice Nurse Julie, admitted that “death can be messy and maybe not so pretty.”

She then shared her observations over the years that can help relatives understand and cope with “the end of a person’s life.”

“In general, people may experience symptoms at the end of their lives that are attributable to the disease they are dying from.”

She went on to say that these included pain, shortness of breath, incurable restlessness, confusion and a “general chaos” that resulted from the patient not being “prepared for the end of his life.”

Speaking about pain, she explained that it “doesn’t necessarily occur just because you’re dying.”

“But people at the end of their lives may be in pain because of the disease they are dying from, and some diseases are more painful than others.”

Julie explained that the good news is that there are “so many things we can do for the pain,” from medications like gabapentin to steroids.

However, the pain can also “fluctuate” and in moments of a “pain crisis” it can take some time before the hospice team can relieve the pain.

“During that period of time – say 12 hours – you will suffer from some kind of pain for 12 hours before your pain is brought under control.

“And that’s sometimes the not so nice part of the end of life.”

Pain, she added, does not mean that there is anything specific “wrong” – apart, of course, from the progression of the disease that causes the pain and leads to death.

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In the specific case of “incurable restlessness” – which may or may not be disease-related – “people are just incurably agitated,” Julie said.

“They are quite confused, you can’t talk to them properly. And they are constantly trying to get out of bed or constantly walking around the house.

“But it’s quite dangerous because they can’t walk properly or they’re too weak or we don’t know where they’re going.”

She added that if patients appear to be persistently “agitated,” the hospice team must try to find out what is going on.

The causes can be, for example, general pain, urinary retention or constipation.

But in “nine out of ten cases,” no specific cause can be identified for terminal agitation, Julie clarified – and when the disorder is idiopathic, it is called “terminal agitation.”

From then on, the hospice company must do its best to “calm” the patient, usually by administering various medications.

Sometimes this actually means keeping them under sedation until they die in order to “protect” them and “prevent them from suffering.”

“Because terminal restlessness can feel really uncomfortable for the patient and the family.

“If you know that this possibility exists, you are better prepared,” she stressed.

The “general chaotic feeling that people can experience at the end of their lives is usually due to a lack of preparation.”

“So how do we prepare for the end of someone else’s life or the end of our own life so that we can alleviate that feeling of chaos?”

Julie offered two strategies to avoid the “chaos” of the pre-death period, whether the dying person is a loved one or yourself.

Her most important recommendation is simply: education and “knowing what to expect, what is normal and what is not normal.”

Then it’s about “having an open dialogue with yourself, with your doctors, with your nurses, with your family about what you’re feeling, what you need and how they can help you,” she explained.

It is important to “understand” that your loved one will “change greatly” at the end of his or her life.

If you are on your final journey, it is equally important to be prepared that your final days will be very different from what you are used to.

“It means you won’t be able to do all the things you used to do. You won’t be able to live completely independently. That’s difficult, that’s hard to accept.

“But if you learn these things now, hopefully you can prepare for it so that when it happens, it doesn’t feel so chaotic,” in addition to the “chaotic nature of what can happen to the body at the end of life,” she explained.

Julie also said that people should be prepared for stool and urinary incontinence and even “fluid” coming out of the mouth and nose.

This is due to the “relaxation of our sphincters” throughout the body – including the stomach, which can lead to belching.

Such sights “can be really disturbing and frightening for family members who are not used to it. If they learn that this is normal, it can hopefully reduce some of the fear and distress associated with it.”

Julie concluded: “Ultimately, it’s just about being aware that something like this can happen.

“You don’t necessarily have to know what to do, you just have to know that something like this can happen,” she stressed, adding that helping with such “chaotic” end-of-life events is exactly why hospice companies exist.