By Chris Haring
Julie McFadden, a California hospice nurse, explains what happens when a patient who has chosen Death with Dignity ingests prescribed end-of-life medications
What physically unfolds when an individual facing a terminal diagnosis takes control of their life story’s final chapter by choosing medical aid in dying?
The often uncomfortable but necessary question can be uneasy, at best, for those considering their end-of-life options. However, California hospice nurse Julie McFadden has been working to make the process a little easier by sharing the insights she has gained practicing in the field for nearly a decade.
In author Alyce Collins’ recent Newsweek story titled What Patients Feel After Taking End of Life Drugs, From a Hospice Nurse, McFadden provides a first-hand testimony about the experiences of terminally ill patients (and their loved ones) who chose to exercise their right to physician-assisted death.
In an update from a September 7 post, data from the California Department of Public Health reveals that participating physicians wrote 5,168 prescriptions under its End of Life Option Act (passed in 2015) between June 9, 2016, and December 31, 2022, with 3,349 individuals ultimately choosing to ingest the medication. Most of these patients had cancer, while others had cardiovascular disease or other underlying illnesses.
Before taking the prescribed medication, McFadden says, patients often gather their loved ones for a final farewell. The nurse recalled the heartfelt goodbyes and expressions of love that often surround her patients as they consume the medication, surrounded by close friends and family.
McFadden also delves into the mechanics of the process, explaining that the medication has two primary effects: the initial sedation, which allows patients to fall asleep peacefully, followed by the second medication, which brings about cardiac arrest.
As patients take the medication, their bodies undergo natural processes associated with dying, including temperature fluctuations, changes in skin tone, and muscle relaxation. The timing of the process varies from person to person, she says, generally taking 45 minutes to an hour.
McFadden also addresses potential complications. Although vomiting is rare, some patients may experience it despite receiving anti-nausea medication. Other complications, such as pain, often stem from the underlying disease rather than the medication itself. In such cases, a medical professional may be present to provide symptom management.
As with any medical procedure, providers must comprehensively educate their patients about the process, including potential risks. McFadden’s insights underscore the importance of providing information and support to those considering their end-of-life options.
Read the full article below:
What Patients Feel After Taking End of Life Drugs, From a Hospice Nurse
published: 10/14/23 AT 6:00 AM EDT
After years of being an independent and private person, Jane knew what was left in store for her after receiving a terminal diagnosis.
She didn’t want to be bedbound or to be cared for by other people in such a deeply personal way. Because of this, she wanted to take control of her death and chose to end her life through California’s death with dignity law.
Hospice nurse, Julie McFadden, 40, was there for Jane’s last breath. She recalls that before she took the medicine, Jane’s family and friends came over to get together as it was clear that she was ready.
“They all said their goodbyes and sweet nothings. She allowed only a few close friends and family stay in the room. Then she drank the drink,” McFadden told Newsweek.
“Before she fell asleep, she laid down, and her family enveloped her while saying ‘I love you,’ and they were saying it back. It makes me cry just thinking of the beauty and love I witnessed then and there. A few minutes later, she was unconscious. Her heart stopped and she died peacefully.”
Every patient will have a unique situation, but in the state of California, where McFadden works, terminally ill adults with less than six months to live may be eligible for death with dignity. McFadden said: “It’s a personal choice, but I think it’s a lot to do with control and their specific disease because there are certain diseases which are harder to die from.”
As Newsweek previously reported, death with dignity is the prescription of life-ending medication for terminally ill patients. They must be physically capable of ingesting the medication independently and have full cognitive awareness of their decision.
At present, death with dignity (which can also be referred to as medical aid in dying or physician-assisted death) is only permitted in 10 states as well as the District of Columbia. These states include Colorado, California, Washington, Hawaii, Montana and Oregon, and there are growing calls for it to be allowed in other states, too. Legislation is currently being looked at in Massachusetts, New York and Pennsylvania to potentially allow patients the ability to choose when they die.
In California, the End of Life Option Act (EOLOA) was passed in 2015 and came into effect in June 2016. Data from the California Department of Public Health shows that 5,168 prescriptions were written between the dates of June 9, 2016, and December 31, 2022. Of those prescriptions, it’s thought that 3,349 individuals died from ingesting the medication.
Among the individuals who used the EOLOA to die in 2022, 66 percent were cancer patients, and 11 percent had cardiovascular disease. The other underlying illnesses, which accounted for less of the deaths include neurological disease, respiratory disease, and kidney disease.
What Does the Medication Do?
There’s no doubt that it’s a divisive issue in America, with a 2018 Gallup poll revealing that 65 percent of respondents think physician-assisted death should be permitted and legislation varying across each state. While it’s often talked about in black-and-white terms, there are many intricacies that occur before and after a person takes the medication.
As someone who has facilitated patients who chose to go down this route, McFadden has discussed what the medication does to the body and how it ends a person’s life.
“There are two main things we want to happen when you take when you take the mixture. The first thing is sedation, so there’s heavy medications to sedate the person, and that’s why they fall asleep first,” she told Newsweek.
“Then the second medication is what makes them die. Patients will ingest these high doses of cardiac medications which make their heart stop. It’s pretty simple because it puts you to sleep and stops your heart.”
Once the medication is consumed, people will exhibit “very normal” signs that occur during a natural death as they enter the actively dying phase, she said. These may include temperature fluctuations, a change of skin tone, and a relaxing of the muscles.
“So, what happens is, you drink the medication, and it puts you to sleep, and then your breathing slows down so much that your body starts shutting down. When it starts shutting down, it goes into what we call the actively dying phase, which is the last phase of life. That happens whether you take that medication or if you’re just dying regularly,” McFadden said.
“Body temperature may fluctuate because the person loses their ability to control their core temperature, their breathing will change because they’re having metabolic and physiological changes. The person will also start breathing differently, their muscles will all relax, meaning their mouth or eyes could hang open because the muscles are so relaxed.”
How Long Does the Process Take?
For the people who feel that this is the best choice for them, getting the approval of two independent physicians can take months, especially as there is no obligation for them to consent to the request.
Research featured in the 2019 Yale Journal of Biology and Medicine involved sending a survey to 1,000 physicians around the U.S. in order to gauge opinions regarding death with dignity. The results indicated that 60 percent of physicians thought the process should be legal, but 13 percent said they would perform the practice if it was legalized.
Once patients have the approval from two doctors and receive the medication, they can choose when to take it themselves. Most eligible people choose to take it at home, according to the Death With Dignity website, and it’s a person’s own decision whether they wish to be surrounded by their family or have a medical professional present. The California Department of Public Health says that a healthcare professional was present for 47 percent of the EOLOA deaths in 2022.
McFadden explained that the process of dying after taking the medication can vary in length for every individual.
“It usually takes around 45 minutes to an hour. Everyone’s different, sometimes people last hours, but I have not seen that happen,” she said. “But I have talked to other people who’ve said sometimes people will hang on in that actively dying phase when they’re not conscious. It can sometimes be the bigger people, those who are taller or bigger, and so their body will take longer to process it.”
Are There Any Complications That Can Occur?
Taking the end-of-life medication isn’t without its complications, as McFadden said that some people may experience vomiting during the process.
She told Newsweek: “It’s never happened to me, but a complication can be vomiting. We do give anti-nausea medication (two different kinds) an hour beforehand usually. I say usually because it does differ from state to state, but this has been my experience.
“Generally speaking, about an hour before you would give two different types of anti-nausea medicine, so the person doesn’t throw up because you don’t want them to throw up that medication. But I have heard that when people have thrown up, it still works.”
Having not seen a patient suffering from vomiting herself, McFadden noted that it only happens in cases “few and far between.”
Any other complications they may suffer, such as pain, may come as a result of the disease or condition they’re dying of. For this reason, McFadden said that a medical professional may be present to help manage the ongoing symptoms.
There are many intricacies that come with the process, so McFadden regularly shares videos to answer people’s questions on her TikTok account (@hospicenursejulie). The videos regularly generate thousands, and even millions, of views each time, as many social media users praise McFadden’s insights.
It Provides People With a Sense of Control
Having limited time left is a daunting prospect, so choosing to end life prematurely isn’t an easy decision for a person to make.
While every individual may have their own specific reasons for taking that step, McFadden believes a lot of it comes down to wanting to control the inevitable.
“It’s very scary to know you’re going to die because of this terminal illness but not know when it’s going to happen. A person could have a lot of symptoms, making them quite uncomfortable, so this gives them the sense of control back,” she said.
“From what I’ve seen, many people seem calm. They’ve decided to take control back, and this is what they want. I think it’s a certain type of personality who wants to do that.”
In states where death with dignity is permitted, individuals must be over 18 in order to qualify for the medication. But McFadden suggests that “it’s less about age, and more about personality” which makes a person inclined to go through with the process.
“I have seen people of all ages do this, and I think when someone is younger, and they’re dying from a disease, it’s usually not a good disease,” she said. “A lot of times, people will get that diagnosis, and they think they don’t want to do this, or they start seeing what their life is going to be like.
“I can only speak from what I’ve been told, but it’s like someone gets to a point when they’re just kind of over it. They don’t want to live like this, and they’d rather choose this other option. They’re still alive, but they’re in a lot of pain, and they just want it to be done.”
Details of Jane’s case have been altered to ensure confidentiality.