A palliative care nurse has spoken candidly about the things that can make a lingering death “messy” – from chronic pain to mental confusion and other forms of “grief”.
Julie McFadden of Los Angeles, known as hospice nurse Julie on social media, admitted that “death can be messy and maybe not so pretty.”
She then delved into what she has observed over the years that can help loved ones understand and cope with “the end of someone’s life.”
‘Generally speaking, at the end of a person’s life, he or she may experience symptoms related to the disease from which he or she is dying.’
Julie McFadden of Los Angeles, known as Hospice Nurse Julie on social media, shed light on how “death can be complicated and maybe not so pretty.”
He went on to list that this included pain, difficulty breathing, terminal agitation, confusion, and “general chaos” stemming from the patient not being “prepared for the end of his life.”
Speaking about grief, he explained that “it’s not necessarily going to happen just because you’re dying.”
“But people who are at the end of their lives may have pain because of the disease they are dying from, and certain diseases are more painful than others.”
Julie explained that the good news is that there are “many things we can do to relieve the pain,” from medications like gabapentin to steroids.
That being said, pain can “go up and down” and in times of “pain crisis” it can take a while for the palliative care team to relieve the pain.
‘During that period of time, let’s say it’s a 12-hour period, before they can control your pain, you’re going to have 12 hours of some type of pain.
And sometimes that’s the not-so-pretty part of the end of life.
Pain, he added, does not mean that anything specific is actually “wrong” – beyond, of course, the progression of whatever condition is causing the pain and leading to death.
Causes of a “disordered” dying experience include pain, difficulty breathing, terminal agitation and “general chaos” when the patient is “not prepared for the end of his or her life” (archive image)
In the specific case of “terminal agitation” – which may or may not depend on an illness – “people will just be terminally agitated,” Julie said.
‘They are very confused, there is no way to reason with them. And they are constantly trying to get out of bed or constantly walking around the house.
“But it’s a little dangerous because they can’t really walk or they’re too weak or we don’t know where they’re going.”
He added that when patients seem to be persistently “unsettled,” the palliative care team will have to try to figure out what is happening.
It can be caused by something like general pain, urinary retention, or constipation, for example.
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 considered “terminal agitation.”
From there, the hospice company must do everything possible to get the patient to “calm down,” usually through a variety of medications.
Sometimes this means keeping them sedated until they die to “keep them safe” and “not make them suffer.”
‘Because terminal agitation can be really uncomfortable, both for the patient and the family.
“Knowing that this is a possibility makes you more prepared,” he stressed.
As for the “general chaotic feeling that people may feel at the end of life, it is usually because they are not prepared.”
‘So how do we prepare for the end of someone’s life or our own end of life so that we can alleviate that sense of chaos?’
Julie concluded: “At the end of the day, it’s just about being aware that these things can happen.”
Julie offered two strategies to avoid such “chaos” in the period before death, 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 and what’s not normal.”
After that, 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, how they can help you,” she explained.
It is important to “understand” that your loved one “will change a lot” as they approach the end of their life.
In the same way, if you are reaching the end of your life, it is essential to be prepared for your last days to be very different from what you are used to.
‘That is, you won’t be able to do all the things you used to do. You will not be able to live super independently. That’s hard, that’s hard to accept.
“But learning these things now will help you prepare so that you don’t feel so chaotic when it happens,” in addition to the “chaotic nature of what can happen to the body at the end of life,” she explained.
Julie further suggested that people should prepare for urinary and bowel incontinence and even leakage of “fluid” from people’s mouths and noses.
This is due to the “relaxation of our sphincters” throughout the body, including the stomach, which can lead to regurgitation.
Those types of images “can be really disturbing and scary for family members who aren’t used to that, and hopefully learning that that’s normal can lessen some of that fear and disturbance that surrounds it.”
Julie concluded: ‘At the end of the day, it’s just about being aware that these things can happen.
“You don’t necessarily have to know what to do, but it’s enough to know that these things can happen,” he emphasized, adding that helping with these types of “messy” end-of-life situations is exactly why companies exist. palliative care.