Hospice nurse candidly reveals what can make a prolonged death 'messy'

A hospice nurse has candidly spoken about the things that can make a prolonged death 'messy' - from chronic pain to mental confusion and other forms of 'suffering.'

Julie McFadden, from Los Angeles, who's known as Hospice Nurse Julie across social media, admitted that 'death can be messy, and maybe not so pretty.'

She then dove into what she's observed over the years that can help loved ones understand and navigate 'someone's end of life.'

'Generally speaking, during someone's end-of-life journey, people can have symptoms because of the disease they are dying from.'

Julie McFadden, from Los Angeles , who's known as Hospice Nurse Julie across social media, shed light on how 'death can be messy, and maybe not so pretty'

She went on to list that this included pain, shortness of breath, terminal agitation, confusion and an 'overall chaos' stemming from the patient not being 'prepared for their end of their life.'

Discussing pain, she explained it is 'not necessarily going to happen just because you're dying.

'But people who are end of life can have pain because of the disease they're dying from, and certain diseases are more painful than others.'

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

That said, pain may 'go up and down,' and in moments of 'pain crisis,' it can take time for the hospice team to bring one's pain down. 

'During that time period - let's say it's a 12-hour time period, before they can get your pain under control - you are going to be in 12 hours of some kind of pain.

'And that's the not so pretty part of end of life, sometimes.'

Pain, she added, doesn't mean anything specific is actually 'wrong' - beyond, of course, the progression of whatever condition is causing the pain and leading up to death.

Among the causes of the 'messy' dying experience are: pain, shortness of breath, terminal agitation, and an 'overall chaos' when the patient isn't 'prepared for the the end of their life' (stock image)

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In the specific instance of 'terminal agitation' - which may or may not be disease dependent - 'people will just be terminally agitated,' Julie said.

'They're pretty confused, there's no reasoning with them. And they're trying to get up out of bed all the time or they're trying to constantly walk around the house. 

'But it's kind of dangerous cause they can't really walk or they're too weak, or we don't know where they're going.'

She added when patients appear to be persistently 'restless,' the hospice team will have to try and figure out what's going on.

It may be caused by something like general pain, holding urine or constipation, for instance. 

But 'nine times out of ten,' there is no specific reason that can be determined behind terminal agitation, Julie clarified - and when it is idiopathic, it is deemed to be 'terminal agitation.' 

From there, the hospice company has to do their best to get the patient to 'calm down,' usually through a variety of medications. 

Sometimes this indeed means keeping them sedated until their death to 'keep them safe' and 'not suffering.'

'Because terminal agitation can feel really uncomfortable, for the patient and for the family.

'Knowing this is a possibility keeps you more prepared,' she emphasized.

As for the 'overall chaotic feeling that people can feel at the end of life is usually due to being unprepared.

'So how do we prepare for someone's end of life or our own end of life so we can relieve that feeling of chaos?'

Julie concluded: 'At the end of the day, it's just about you being aware that these things can happen' 

Julie offered two strategies to avoid said 'chaos' in the lead-up to dying, whether the person dying is a loved one, or you. 

Her number one recommendation, simply, is education and 'knowing what to expect, knowing what's normal, what's not normal.' 

After that, it is a matter of 'having an open dialogue with yourself, with your doctors, with your nurses, with your family, about what you're feeling, what you need, how they can help you,' she explained.

It's important to 'understand' that your loved one will 'change a lot' as they approach their end of life.

Likewise, if it's your end of life journey, it is crucial to be prepared that your final days will be quite different than you're used to.

'Meaning that, you won't be able to do all the things you use to do. You won't be able to live super independently. That's difficult, that's difficult to accept.

'But learning this stuff now will hopefully help you prepare so it won't feel so chaotic when it's happening' on top of the 'chaotic nature of what can happen with the body at the end of life,' she elaborated.

Julie further offered that people should prepare for bowel and urine incontinence and even 'fluids' coming out of people's mouth and nose.

This is due to the 'relaxation of our sphincters' all around the body - including in our stomach, which can cause regurgitation.

Those types of sights 'can be really disturbing and scary for family members who are not used to that and learning that that's normal can hopefully decrease some of that fear and disturbance around it.' 

Julie concluded: 'At the end of the day, it's just about you being aware that these things can happen.

'You don't necessarily have to know what to do, but it's just that you know these things can happen,' she stressed, adding that helping out with these sorts of 'messy' end of life occurrences is exactly the reason hospice companies exist.