Hospice Nurse Reveals Hardest Thing to Witness in Dying Patients

A hospice nurse has revealed what she believes is the "hardest" part about caring for terminally ill patients in a TikTok video.

The video, posted by Julie McFadden on her "hospicenursejulie" page, has been viewed more than 100,000 times and had received more than 8,300 likes at the time of writing.

McFadden has been working as a hospice nurse for more than five years and regularly posts insights into her job and end-of-life care on her social media accounts in a bid to raise awareness about the process of dying.

"I've witnessed hundreds of deaths and here's the hardest part—terminal agitation," she said in the video.

"What does it look like? Exactly as it sounds. So, it's someone who is usually mostly non-verbal, can't really talk but is restless and agitated—continuously getting out of bed, continuously moving around, continuously pulling at things, looking irritated, seeming agitated."

Getting Agitated

Some terminally ill patients experience agitation toward the end of their life, according to Marie Curie—an end of life charity based in the United Kingdom.

McFadden told Newsweek that she estimates around 30 percent of terminally ill patients experience terminal agitation at some point.

"Certain diagnoses experience it more frequently than others, and I see it more in younger patients," she said.

Terminal agitation occurs in the last few days of life and can often be characterized by restlessness, fidgeting and changes to a patient's behavior.

According to Marie Curie, signs and symptoms may include distressed behavior; confusion; an inability to feel settled; calling out, moaning, shouting or screaming; hallucinations; trying to get out of bed or wandering; rambling conversations; and fidgeting, among other things.

McFadden said health care workers try and determine whether something is causing the patient to be agitated. Agitation can be caused by medications, psychological factors or the patient's condition itself.

"First, you assess if something is causing it. Do they have pain? Are they having urine retention? If you find nothing in your assessment, it's likely terminal agitation—and there are several different medications we can use and decrease it," she told Newsweek.

Sometimes medication is needed to sedate the person to calm them or even put them to sleep.

"We usually have to strongly medicate the person to keep them safe and to get them not agitated," she said in the video. "Sometimes when we sedate them they'll wake up and be less agitated. Sometimes they're just either awake and agitated or asleep and not. So, we have to keep them asleep."

Terminal agitation can often be very distressing for the patient and their carers or loved ones. McFadden said there were several things she would say to the loved ones of people who are watching a loved one experience terminal agitation.

"Education can go a long way. Explain what it is, and why it's likely happening. Explain and educating about medications, that will help. Validating the loved ones when they express their frustration and how hard it is to witness and have to care for their loved one when they are having terminal agitation," she said.

"Also, advising them to have others help if they can, so each person to take a break and rest."

McFadden said other tough parts of her job included time restraints, navigating red tape and difficulties helping certain terminally ill patients.

"You have several patients and families to help and not enough time on a shift," she said. "A lot of red tape to jump through sometimes to get patients what they need. Most of the time, we do an excellent job at alleviating pain and suffering at the end-of-life but sometimes it's harder than others to do so, and that can be a very tough part of the job."

A terminally ill patient
A file photo showing a terminally ill patient. A hospice nurse has revealed what she believes is the “hardest” part about caring for terminally ill patients in a TikTok video. iStock