Category: Death Education

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Thanatophobia

— Or the Fear of Dying, May Prevent You From Actually Living

BY Mara Santilli

Despite the best efforts of the death positivity movement, most people do not have a good time going to wakes or memorial services, and that’s completely normal. But for others, the thought of death—whether it’s a loved one dying or themselves—sparks intense fear and panic. “Fear is a natural and important human emotion,” says Mitchell L. Schare, PhD, ABPP, director of the Hofstra University Phobia and Trauma Clinic. But sometimes that fear of dying can be taken to extremes. “When it becomes inhibitory to living life, it becomes a phobia,” says Dr. Schare. Specifically, that phobia is known as thanatophobia, or the intense fear of death and dying.

“Fear is a natural and important human emotion. When it becomes inhibitory to living life, it becomes a phobia.” —Mitchell L. Schare, PhD, ABPP, director of the Hofstra University Phobia and Trauma Clinic

Thanatophobia (also called “death anxiety”) can be considered the “master fear,” says Dr. Schare, since so many other phobias—from fearing spiders to airplanes to illness—can be traced to a fear of death. But as with any kind of phobia, thanatophobia is more serious than just a distaste for thinking about death. It can cause avoidance of anything that might theoretically lead to death or situations in which family members or friends are dying.

There’s so much to unpack when it comes to thanatophobia. Here’s what you need to know about the fear of death, where it comes from, and how someone can cope with thanatophobia.

Is thanatophobia a mental illness?

Like other specific phobias, thanatophobia is considered a type of anxiety disorder1. According to the DSM-5-TR (aka the Diagnostic and Statistical Manual of Mental Disorders, the tool mental health professionals use to make diagnoses), a phobia is a “marked fear or anxiety about a specific object or situation (e.g., flying, heights, animals, receiving an injection, seeing blood).” For people with phobias (like thanatophobia), their fear or anxiety is way greater than the actual danger they face from their phobia, they go to great lengths to avoid it, and it cannot be explained by another mental health disorder.

Because thanatophobia is a type of anxiety disorder, mental health professionals will apply some of the same techniques used to treat anxiety disorders, such as cognitive behavioral therapy (CBT). (More on that in a bit!)

How common is thanatophobia?

There’s not a ton of data available on the general population, but an estimated 3 to 10 percent of people experience thanatophobia, according to the Cleveland Clinic.

Interestingly, research suggests that the prevalence of death anxiety changes with age in unexpected ways. One 2007 paper published in the journal Death Studies found that death anxiety spikes in young adults in their early ‘20s2, and then dips off. It also found that in women (but not men), death anxiety surges again in their ‘50s. While you might assume that older adults might have more fear of death (because they’re, you know, closer to the natural end of their lives), other research suggests that elderly patients have lower levels of death anxiety3 than their children.

What are the symptoms of thanatophobia?

“Thanatophobia [symptoms] can vary in prevalence depending on cultural, personal, and situational factors,” explains clinical psychologist Alexander Alvarado, PsyD, phobia specialist at Thriving Center of Psychology. Here are some of the common emotional and behavioral symptoms of thanatophobia:

  • Obsessive thoughts, including checking things constantly about your health and well-being (or that of your loved ones)
  • Avoidance behaviors around death or potentially dangerous situations (like refusing to drive or fly in airplanes, for example, out of fear of fatal accidents)
  • Severe anxiety (like feelings of dread, panic, etc.) when thinking about death. This might manifest as physical symptoms of anxiety in the form of heart palpitations, dizziness, chills, nausea, shortness of breath, etc.

This might seem a bit confusing initially; isn’t everyone afraid of dying, at least a little bit? “Having some degree of a fear of death can be functional—it might make you drive more carefully, or take extra care of yourself when you’re sick, so you can live a better quality of life,” says Dr. Schare.

But the tipping point into death anxiety can be how the anxiety manifests. Being so afraid of being in any situation that could involve death (no matter how remote the possibility) that you isolate yourself and never go out is likely closer to thanatophobia, Dr. Schare says as an example.

What causes thanatophobia?

As with any type of anxiety disorder, thanatophobia doesn’t always have a clear-cut cause. But experts believe there are some risk factors or potential triggers worth knowing.

A history of trauma or mental illness

“There isn’t a clear medical cause of thanatophobia, but it’s believed to be related to existential concerns and possibly a history of trauma,” says Dr. Alvarado. The trauma history could be related to significant life changes, such as a personal illness or near-death experience. (This could explain, for example, why nurses and emergency-services personnel had very high levels of death anxiety4 during the early years of the COVID-19 pandemic.) It’s also more likely to be prevalent in people who have a history of anxiety disorders.

Loved ones dying early

People who have experienced the death of a loved one, especially if they did not have a thorough understanding of death at that time, could be susceptible to developing thanatophobia, says clinical psychologist Tirrell De Gannes, PsyD, anxiety disorder specialist at Thriving Center of Psychology. It might be more pronounced for people who have an over-reliance on loved ones, he adds, and therefore fear what could happen if that person were to die.

Religious, spiritual, or philosophical beliefs

People have different religious, spiritual, and philosophical outlooks on death and what the aftermath of that process might look like, says Dr. Schare, whether that’s a spiritual “better place” that someone believes in, or a rebirth. Those beliefs might moderate the fear in some respects, he adds.

Other times, people believe in none of the above, and that doesn’t mean that they automatically have thanatophobia. It’s just that the fear of dying could be more pronounced if people emphasize the “unknown” aspect of what happens after death.

Interestingly, a 2017 meta-analysis published in the journal Religion, Brain & Behavior found the people who were least likely to have death anxiety were the atheists and the extremely religious5. “It may well be that atheism also provides comfort from death, or that people who are just not afraid of death aren’t compelled to seek religion,” said the researchers in a press release.

How is thanatophobia diagnosed?

If a mental health professional suspects you could have thanatophobia, or any phobia, the diagnosis involves clinical interviews. The therapist will ask you questions to assess how your fear (and its symptoms) impact your life, Dr. Alvarado says. They will take notes on how much death is a focus, adds Dr. De Gannes, whether or not the person has any sense of relief, and whether or not it affects their behaviors, such as isolating from other people or not participating in activities that could be a risk of injury or illness.

How is thanatophobia treated?

As with other specific phobias, thanatophobia is often treated with CBT. This research-backed practice will help patients challenge and change their negative thought patterns around death, says Dr. Alvarado.

Exposure and response prevention therapy (ERP) is a specific type of CBT that is commonly used with phobias. The goal is to help someone learn to manage their phobia by getting exposed to it gradually in a safe, controlled setting. “The goal is to reduce avoidance behaviors, and potentially introduce mindfulness practices to help cope with existential concerns,” adds Dr. Alvarado. No, this doesn’t involve seeing a dead body in therapy or something. Dr. De Gannes says a therapist might try the following exposures instead: talking about the topic of death, practicing having an end-of-life conversation with a loved one, and/or imagining consequences after the death of a relative.

ERP has varying intensities and styles, says Dr. Schare. It can be very literal, done in real-world environments. Think: a therapist taking someone who is afraid of bridges on a walk over a bridge, and speaking with them afterward to recap what happened and help the person understand that they are safe, he explains. Exposure therapy can also be done in virtual reality or imaginary environments, where the person, guided by a mental health professional, enters a scenario in which they could have a near-death experience, allowing them to confront that anxiety around it head-on.

Coping with thanatophobia

It is possible that the fear of life gets more pronounced with age, as people start to have more prominent health issues and start to become closer to death, says Dr. Schare. But the bottom line is that phobias and anxiety disorders can be cured, he says. The cognizance that you and your loved ones will die at some point does not go away, but people can become better equipped to cope with it.

Some coping strategies can include daily mindfulness, meditation, and journaling to help you stay present and focused on the here and now, as well as to process the fears, suggest Dr. Alvarado. You also might find relief and some additional coping skills from talking to other people in support groups about phobias, and of course from individual therapy.

Avoiding death and anything to do with it is not the most helpful way to cope with thanatophobia. “Shying away from the topic of death only increases the mystery and fear of it,” says Dr. De Gannes. He emphasizes that it’s important to normalize the concept of death in conversations to demystify the fear and help you continue to live your life.

Complete Article ↪HERE↩!

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Understanding Hospice Home Care

— A Complete Guide

Navigating the later phases of a loved one’s life may be an extremely emotional and difficult experience. During these difficult times, hospice home care arises as a source of comfort and support, providing a compassionate alternative to typical hospital medical treatment. This specialist care focuses on improving the quality of life for those in the final stages of a terminal illness by giving them the dignity, respect, and peace they deserve at home.

The Essentials of Hospice Home Care

Hospice home care exemplifies a compassionate approach to end-of-life care, providing a beacon of comfort and dignity to those in their final stages of life. Unlike traditional medical treatments geared at curing diseases, hospice care focuses on quality of life, providing comfort and support to both patients and their families. This comprehensive care paradigm is holistic, addressing patients’ psychological, social, and spiritual needs as well as the physical symptoms of their sickness.

At the heart of hospice home care is the dedication to respecting a patient’s choices, allowing them to spend their final days surrounded by loved ones in the familiar comfort of their own home. Pain treatment is an important part of this therapeutic method. Expertly trained healthcare experts work diligently to manage symptoms and reduce discomfort, allowing patients to live as fully and comfortably as possible.

Beyond physical care, hospice home care offers emotional and psychological assistance. Hospice staff provide counseling and grief assistance because they understand that patients and their families are going through one of the most difficult times of their lives. This guarantees that families are not alone in their journey, giving them a shoulder to lean on both during and after the patient’s life.

Spiritual care is also an important component of hospice home care, allowing patients and their families to examine life’s core concerns, make peace with unresolved issues, and, if applicable, strengthen their spiritual connections. This component of treatment is tailored to the individual’s beliefs and desires, with the goal of providing peace and meaning to patients and their loved ones during this momentous life experience.

Hospice care teams are multidisciplinary, made up of doctors, nurses, social workers, chaplains, therapists, and trained volunteers. Each member contributes their knowledge to build a support network that surrounds the patient and their family with care, love, and understanding. This multidisciplinary approach assures that every imaginable need—whether physical, emotional, or spiritual—is met.

In essence, hospice home care represents a paradigm shift in how we see the end of life. It is about appreciating the importance of every minute and allowing patients to spend time with loved ones, reflect on their life, and transition quietly. Hospice home care helps to reimagine the final chapter of life as one of love, respect, and compassion, rather than despair.

Who Can Benefit from Hospice Home Care?

Hospice care is designed for patients who are facing the end stages of a terminal illness, with a life expectancy of six months or less if the disease follows its usual course. However, it’s not just for the patients; hospice care also significantly benefits the families and caregivers by providing them with educational resources, emotional support, and respite care, helping them navigate through their grief and the caregiving process.

The Core Services Offered

The hospice care team typically includes doctors, nurses, social workers, spiritual advisors, counselors, and trained volunteers. They work together to tailor a care plan that meets the individual needs of each patient and family, which can include:

  • Pain and symptom management: Focusing on alleviating symptoms and ensuring the patient’s comfort.
  • Emotional and psychological support: Addressing the emotional, psychological, and spiritual needs of patients and their families.
  • Companionship and daily care assistance: Helping with daily activities and providing companionship to reduce feelings of isolation and anxiety.
  • Bereavement support: Offering grief counseling and support groups for families before and after their loved one’s passing.

How to Choose a Hospice Home Care Provider

Selecting the right hospice care provider is crucial. It involves considering factors such as the provider’s reputation, the quality of care, the availability of services, and the level of communication and support offered to families. It’s important to meet with several providers, ask questions, and choose one that aligns with the patient’s needs and family values.

The Impact of Hospice Home Care

The importance of hospice home care to patients and their families cannot be emphasized. This approach to end-of-life care has a significant impact on the quality of patients’ final days because it allows them to remain in the familiar and pleasant environment of their own homes. The environment has a significant impact on a person’s well-being, particularly throughout the final stages of life. Being at home rather than in a hospital allows patients to be surrounded by personal memories, things, and the people they care about, which can considerably reduce the emotional load of facing a terminal illness.

Hospice services provide patients with specialized care that addresses their physical, emotional, and spiritual needs. Pain and symptom control are prioritized to allow patients to interact with their relatives and enjoy their remaining time as comfortably as possible. This level of care empowers patients by offering them a sense of control over their lives and the dignity to choose their own treatment and how they want to spend their final days.

Navigating End-of-Life Care with Compassion and Dignity

Families benefit greatly from the extensive support that hospice home care offers. Going through a loved one’s end-of-life process can be emotionally and physically draining. Hospice care teams do more than just attend to the patient; they also assist families with counseling, respite care, and information about what to expect. This assistance is crucial in guiding families through the complexity of sorrow, loss, and the practical aspects of caring. It also allows the family to focus on being present with their loved one rather than being distracted by caregiving or decision-making.

Hospice home care provides significant support to families, which benefits them greatly. Going through a loved one’s end-of-life care can be both emotionally and physically taxing. Hospice care teams do more than just look after the patient; they also provide families with counseling, respite care, and information on what to expect. This help is critical in guiding families through the complexities of grief, loss, and the practical responsibilities of caregiving. It also enables the family to concentrate on being with their loved one rather than being distracted by caregiving or decision-making.

 Component of hospice care cannot be overlooked. Families often find themselves in uncharted territory when a loved one enters hospice care. The hospice team’s role in educating families about what to expect, how to manage symptoms, and how to cope with grief is an essential service that can demystify the dying process and alleviate fears.

In essence, hospice home care profoundly impacts both patients and their families by providing a holistic approach to end-of-life care. It ensures that patients can live their final days with dignity and comfort, surrounded by love, while offering families the support, education, and guidance needed to navigate this challenging journey with grace. This model of care not only addresses the physical symptoms of the patient but also nurtures the emotional and spiritual well-being of everyone involved, making the inevitable transition a shared, supported, and deeply human experience.

Hospice home care displays the power of compassion and dignity in the face of life’s most challenging challenges. Hospice care focuses on comfort and quality of life, guiding patients and families through the end-of-life process with dignity and support. If you or a loved one are considering hospice care, remember that it is a decision that prioritizes love, dignity, and comfort during the most difficult times.

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My advice for terminally ill Latinos like me

— You have options

By Jose Alejandro Lemuz

I am dying from prostate cancer that has spread to my bones.

But it’s comforting to know that I will likely soon die gently because I plan to use a medical aid-in-dying law championed by civil rights icon Dolores Huerta.

Thanks to the California End of Life Option Act, I will soon have the option to take a medication prescribed by my doctor that will allow me to die peacefully.

While I understand why my doctor wanted me to undergo more treatments, at this point in the rapid progression of the disease, the costs outweigh the benefits for me. Doctors should consult with patients about their care, not dictate it. Only I can determine how much suffering I can endure.

Less than three percent of the Californians who used the law in 2022 were Latinos, even though we represent 40% of the state’s population, and polling shows 68% of Hispanic Californians support medical aid in dying.

I suspect this disparity is because we have unequal access to this end-of-life care option because of healthcare system bias, cultural differences, and/or language barriers. I am a low-income body shop mechanic who does not speak English. My family doesn’t even have money for my burial.

Shamefully, I had to learn about this law through YouTube videos of a young Puerto Rican man, the late medical aid-in-dying advocate Miguel Carrasquillo, and TV news stories, instead of through my own doctors.

‘No More Treatment’

In December 2023, three months after trying to start the conversation about medical aid in dying with my healthcare team and after I had already endured numerous rounds of treatment since my diagnosis in 2018, I told my doctor:

“I don’t want any more treatment, I want you to respect my decision and I want you to help me. I’m asking that you declare me at the end stage because you’re the one who knows the treatment isn’t working for me anymore.”

I repeatedly asked my oncologist to estimate how long I have to live.

She declined to give me a prognosis. I showed my doctors a web page about this end-of-life care option to prompt the conversation with them.

They responded, “No, not yet…Keep taking more chemo.”

‘I Have Options’

I kept telling my doctors: “I have options.”

Why did my doctors not advise me about my healthcare options at the end of life, including my right to decline medical treatment for this incurable illness?

Hospice

For five years, I endured treatments to try to cure the cancer so I could work to provide for my two children and enjoy life.

Not anymore.

Last week [March 10], my doctors finally placed me in hospice care that focuses on alleviating some of the pain.

I am tired. I am weak. I have had a fever and convulsions for days. My frail and thin body can no longer withstand more than just a few steps.

Suffering is like being tortured.

Cancer consumes you little by little.

Unfortunately, the hospice care I am getting does not significantly reduce my suffering, so I will soon get the medication that will relieve me of this pain so I can die in peace.

I have spoken to God and asked Him to forgive my sins throughout my life.

I have talked to my children.

They understand and they support my decision.

They know it is my time to go.

Complete Article ↪HERE↩!

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All pets go to heaven.

— She helps them do it at home.

Eden Gaines, left, talks with veterinarian Karen Meyers about the decision to euthanize Xochitl, a boxer-Great Dane mix who has cancer.

By

Veterinarian Karen Meyers pulls her black minivan into the driveway of a townhouse in Maryland’s National Harbor. The home, in a gated community, is perched on a windy bluff not far from restaurants, bars, a casino — places of revelry.

The vet carries her brown doctor’s bag inside. There, she meets her patient: Xochitl, known as Xochi, an 11-year-old boxer-Great Dane mix weighing around 80 pounds.

Xochi, recently diagnosed with cancer, is struggling. A film covers her right eye. She had been bleeding from her mouth, refusing to eat. Now she stands in the townhouse’s living room, mournfully greeting family members who have come to say goodbye.

Xochi climbs onto the living room’s leather couch and lies down. Owner Eden Gaines and her family gather around her. Meyers opens her bag.

Meyers explains the procedure. First, Xochi will be injected with a sedative to make her fall asleep. Five to 10 minutes later, Meyers will administer sodium pentobarbital, which will euthanize her. But Xochi would feel no pain, Meyers assures the family.

She asks whether anyone has any questions.

No one does.

“Here we go,” she says.

Meyers says she has euthanized 1,500 animals in four years.

Pet adoption spiked during the pandemic, with nearly 1 in 5 American households taking animals in and spending far more on them than pet owners did decades ago. With more beasts in our lives — as companions, as emotional support animals, as the beneficiaries of pet trusts — it only makes sense that their owners want their final moments in their lives to be as peaceful and painless as possible.

That’s where Meyers comes in. Working with Lap of Love, a company that provides veterinarian referrals for at-home pet euthanasia, she travels from house to house in the D.C. region offering grieving families’ animals what the word euthanasia means: “good death.” In four years, she has euthanized 1,500 animals: cats, dogs, rabbits, rats. Some had been with their owners since childhood. Some had traveled the world with them. Some were their owner’s sole companion.

Meyers has observed death rituals that include praying, burning incense, wrapping a deceased pet’s body in a white sheet, and opening a window for a pet’s spirit to exit. She has listened to owners read poems or letters to their pets and cried along with them.

“When people hear what I do for living, it sounds sad,” Meyers says. “But it’s strangely rewarding. … You give pets a peaceful experience. It’s a final gift.”< Meyers has been surrounded by a menagerie all her life. Growing up, she usually had a dog and one or two cats; at various times, she’s also had two hamsters, two turtles, a guinea pig, a bird and four chickens. Right now, she has Wren, a 6-year-old Cavalier King Charles spaniel; Travis, a 3-year-old pug; Brinkley, a 13-year-old rat terrier Chihuahua; and Pablo, a red-belly parrot. Right before the pandemic, Meyers decided to shift to doing euthanasia full time. She had been a veterinarian for more than two decades, and pet euthanasia turned out to be less stressful than working in an office while raising two children. In-home euthanasia can be easier on animals and their owners than office appointments with other sick animals and their distressed owners crowded around.

The first injection makes Xochi fall asleep.
Rameses Gaines holds a piece of Xochi’s fur.

Meyers administers the first shot in Xochi’s back. The dog, already lying down with her head on Gaines’s lap, turns to glance at Meyers as if mildly annoyed.

Then, the dog relaxes.

Minutes pass.

Using a hair clipper, Meyers shaves an inch-long strip of one of Xochi’s legs and inserts a small IV line. After confirming that the family wants to continue, Meyers administers the second shot, the one with the fatal dose.

Gaines looks at the spot on Xochi’s leg where the IV had been inserted.

“It’s amazing how gray she became,” Gaines says.

Meyers holds a stethoscope to Xochi’s chest. “Xochi has her wings,” she says.

The family cries.

So does Meyers.

She and Gaines embrace.

Meyers maneuvers Xochi onto a stretcher and covers her with a blanket. With the help of Gaines’s sons, she loads the dog into her car. Eventually Xochi will be cremated and her ashes returned to the Gaines family.

Death is a part of life, Meyers says.

“Many times, people will comment how a human family member passed, and it was so painful at the end, and this is peaceful by contrast,” she says.

They tell her, she says, that they wish they could go the same way.

Rameses Gaines touches a mold of Xochi’s paw print.

Complete Article ↪HERE↩!

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I Asked My Mom if She Was Prepared to Die

— Then I talked to some end-of-life experts. Here’s what I found out.

By By Shaina Feinberg and Julia Rothman

Recently, I had the following conversation with my 82-year-old mother, Mary:

Me: Are you prepared to die?

My mom: Not really. But I am prepared with my paperwork.

You might be wondering why I was asking my mom about her end-of-life preparedness. Well, when my dad, Paul, died suddenly a few years ago, we were completely unprepared.

“Dad and I never talked about what he wanted for his funeral,” my mom said. “He was 74 when he died, and he was in pretty good shape.”

On top of everything she had to do when he died, like planning the funeral, there was also the stress of finances and paperwork. “We had a joint checking account, but it didn’t have a lot of money. Our other bank account had more money, but was only in his name. I had to get that sorted out, which took ages.”

The most helpful advice my mom got when my dad died? “My best friend, Fran, told me, ‘Get a lot of death certificates because you’re going to have to send them to people and sometimes they don’t want a Xerox, they want the real thing.’ I got 15 death certificates from the funeral parlor.”

Preparing to die is complicated. How’s that for an understatement? You have to consider the emotional, spiritual and financial aspects. We talked to three end-of-life experts who unpacked how to make this extensive undertaking slightly more manageable.

According to a survey by Ethos, fewer than half of Americans have discussed their end-of-life plans with loved ones. Yet having these conversations is important, said Sarah Chavez, executive director of the nonprofit the Order of the Good Death, which provides resources to learn about and plan for death.

“These talks can be awkward,” Ms. Chavez said, “but by planning and talking about these things, it’s such a gift for the family that’s left behind.”

While you’re thinking about what to do with your body, you’ll also want to consider what to do with your stuff. “At a baseline, everybody should have a couple documents that are in effect while you’re alive,” said Michael Pevney, an estate planning lawyer with a practice in California. (He also makes videos about estate planning on TikTok.)

No matter what you decide to do with your body or your stuff, you will need someone to carry out your requests.

If you’re unwilling to ask your loved ones about their death preparations, there are other ways to broach the subject. “The easiest way is to open the family photo album and start having conversations about the people in the pictures,” said Joél Simone Maldonado, a funeral director and death educator. “The conversation always turns to what people did or didn’t like about a funeral or grieving process.” Mrs. Maldonado suggests using those conversations as a springboard to ask questions about what people’s end-of-life hopes are. And take notes.

The only upside to being so unprepared for my dad’s death is that now my mom is super prepared. “I have several folders in a cabinet that have all the things you should do when I die,” she said. “I’ve listed you as power of attorney, so you can write a check for the funeral. I’ve paid for my gravesite already. I’ll be next to Dad, under the same gravestone.”

When I asked my mom how she feels looking at the empty side of the gravestone, she said: “There’s my side. I have a place! Oh, and remember,” she added, “I’ve always wanted a mariachi band at my funeral.” Noted.

Complete Article ↪HERE↩!

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Overdose or Poisoning?

— A New Debate Over What to Call a Drug Death.

Sandra Bagwell of Mission, Texas, holding the remains of her son, Ryan, who died in 2022. “Ryan was poisoned,” she said.

Grieving families want official records and popular discourse to move away from reflexive use of “overdose,” which they believe blames victims for their deaths.

By Jan Hoffman

The death certificate for Ryan Bagwell, a 19-year-old from Mission, Texas, states that he died from a fentanyl overdose.

His mother, Sandra Bagwell, says that is wrong.

On an April night in 2022, he swallowed one pill from a bottle of Percocet, a prescription painkiller that he and a friend bought earlier that day at a Mexican pharmacy just over the border. The next morning, his mother found him dead in his bedroom.

A federal law enforcement lab found that none of the pills from the bottle tested positive for Percocet. But they all tested positive for lethal quantities of fentanyl.

“Ryan was poisoned,” Mrs. Bagwell, an elementary-school reading specialist, said.

As millions of fentanyl-tainted pills inundate the United States masquerading as common medications, grief-scarred families have been pressing for a change in the language used to describe drug deaths. They want public health leaders, prosecutors and politicians to use “poisoning” instead of “overdose.” In their view, “overdose” suggests that their loved ones were addicted and responsible for their own deaths, whereas “poisoning” shows they were victims.

“If I tell someone that my child overdosed, they assume he was a junkie strung out on drugs,” said Stefanie Turner, a co-founder of Texas Against Fentanyl, a nonprofit organization that successfully lobbied Gov. Greg Abbott to authorize statewide awareness campaigns about so-called fentanyl poisoning.

“If I tell you my child was poisoned by fentanyl, you’re like, ‘What happened?’” she continued. “It keeps the door open. But ‘overdose’ is a closed door.”

For decades, “overdose” has been used by federal, state and local health and law enforcement agencies to record drug fatalities. It has permeated the vocabulary of news reports and even popular culture. But over the last two years, family groups have challenged its reflexive use.

They are having some success. In September, Texas began requiring death certificates to say “poisoning” or “toxicity” rather than “overdose” if fentanyl was the leading cause. Legislation has been introduced in Ohio and Illinois for a similar change. A proposed Tennessee bill says that if fentanyl is implicated in a death, the cause “must be listed as accidental fentanyl poisoning,” not overdose.

Meetings with family groups helped persuade Anne Milgram, the administrator of the Drug Enforcement Administration, which seized more than 78 million fake pills in 2023, to routinely use “fentanyl poisoning” in interviews and at congressional hearings.

Various snapshots of Mrs. Bagwell’s son, Ryan, on a cork board.
Ryan died after swallowing one pill from a bottle of what he believed to be Percocet, a prescription painkiller.
A dog sits on a chair on a patio, seeming to look through the window at a framed portrait of Ryan Bagwell that rests on a table.
Ryan Bagwell left behind his dog, Macy.

In a hearing last spring, Representative Mike Garcia, Republican of California, commended Ms. Milgram’s word choice, saying, “You’ve done an excellent job of calling these ‘poisonings.’ These are not overdoses. The victims don’t know they’re taking fentanyl in many cases. They think they’re taking Xanax, Vicodin, OxyContin.”

Last year, efforts to describe fentanyl-related deaths as poisonings began emerging in bills and resolutions in several states, including Louisiana, New Jersey, Ohio, Texas and Virginia, according to the National Conference on State Legislatures. Typically, these bills establish “Fentanyl Poisoning Awareness” weeks or months as public education initiatives.

“Language is really important because it shapes policy and other responses,” said Leo Beletsky, an expert on drug policy enforcement at Northeastern University School of Law. In the increasingly politicized realm of public health, word choice has become imbued with ever greater messaging power. During the pandemic, for example, the label “anti-vaxxer” fell into disrepute and was replaced by the more inclusive “vaccine-hesitant.”

Addiction is an area undergoing convulsive language change, and words like “alcoholic” and “addict” are now often seen as reductive and stigmatizing. Research shows that terms like “substance abuser” can even influence the behavior of doctors and other health care workers toward patients.

The word “poison” has emotional force, carrying reverberations from the Bible and classic fairy tales. “‘Poisoning’ feeds into that victim-villain narrative that some people are looking for,” said Sheila P. Vakharia, a senior researcher at the Drug Policy Alliance, an advocacy group.

But while “poisoning” offers many families a buffer from stigma, others whose loved ones died from taking illegal street drugs find it problematic. Using “poisoning” to distinguish certain deaths while letting others be labeled “overdose” creates a judgmental hierarchy of drug-related fatalities, they say.

A portrait of Fay Martin, who wears a gray, long-sleeved sweater and leans on a fence overlooking a canal with boats docked in it.
Fay Martin of Corpus Christi, Texas. Her son Ryan died in 2021. “When my son died, I felt that stigma from people, that there was personal responsibility involved because he had been using illicit drugs,” she said.

Fay Martin said her son, Ryan, a commercial electrician, was prescribed opioid painkillers for a work injury. When he grew dependent on them, a doctor cut off his prescription. Ryan turned to heroin. Eventually, he went into treatment and stayed sober for a time. But, ashamed of his history of addiction, he kept to himself and gradually began to use drugs again. Believing that he was buying Xanax, he died from taking a fentanyl-tainted pill in 2021, the day after his 29th birthday.

Although he, like thousands of victims, died from a counterfeit pill, his mourning mother feels as if others look at her askance.

“When my son died, I felt that stigma from people, that there was personal responsibility involved because he had been using illicit drugs,” said Ms. Martin, from Corpus Christi, Texas. “But he didn’t get what he bargained for. He didn’t ask for the amount of fentanyl that was in his system. He wasn’t trying to die. He was trying to get high.”

To a growing number of prosecutors, if someone was poisoned by fentanyl, then the person who sold the drug was a poisoner — someone who knew or should have known that fentanyl could be lethal. More states are passing fentanyl homicide laws.

Some people note that the idea of a poisoner-villain doesn’t account for the complications of drug use. “That’s a little too simplified, because a lot of people who sell substances or share them with friends are also in the throes of a substance use disorder,” said Rachael Cooper, who directs an anti-stigma initiative at Shatterproof, an advocacy group.

People who sell or share drugs are usually many steps removed from those who mixed the batches. They would likely be unaware that their drugs contained deadly quantities of fentanyl, she said.

“In a nonpoliticized world, ‘poisoning’ would be accurate, but the way it’s being used now, it is reframing what is likely an accidental event and reimagines it as an intentional crime,” said Mr. Beletsky, who directs Northeastern’s Changing the Narrative project, which examines addiction stigma.

In toxicology and medicine, “overdose” and “poison” have value-neutral definitions, said Kaitlyn Brown, the clinical managing director of America’s Poison Centers, which represents and collects data from 55 centers nationwide.

“But the public is going to understand terminology differently than people who are immersed in the field, so I think there are important distinctions and nuances that the public can miss,” she said.

“Overdose” describes a greater dose of a substance than was considered safe, Dr. Brown explained. The effect may be harmful (heroin) or not (ibuprofen).

“Poisoning” means that harm indeed occurred. But it can be a poisoning from countless substances, including lead, alcohol and food, as well as fentanyl.

Both terms are used whether an event results in survival or death.

Photos of Ryan Paul Malcolm arrayed on a kitchen table in Fay Martin’s home.
Ryan Paul Malcolm went into treatment for addiction, but when he started using again, he kept to himself. Believing he was buying Xanax, he died from fentanyl in a tainted pill in 2021.
A shiny orb on a stand, a special urn containing Ryan’s ashes, sits on a bureau in a bedroom under a television.
Ryan’s urn in Ms. Martin’s home. He was an avid Denver Broncos fan.

Until about 15 years ago, the Centers for Disease Control and Prevention, an esteemed source of data on national drug deaths, often used both terms interchangeably. A C.D.C. report detailing rising drug-related deaths in 2006 was titled “Unintentional Drug Poisoning in the United States.” It also referred to “unintentional drug overdose deaths.”

To streamline the growing drug fatality data from federal and state agencies, the C.D.C. shifted exclusively to “overdose.” (It now also collects statistics on reported nonfatal overdoses.) The C.D.C.’s Division of Overdose Prevention notes that “overdose” refers just to drugs, while “poisoning” refers to other substances, such as cleaning products.

When asked what unbiased word or phrase might best characterize drug deaths, experts in drug policy and treatment struggled.

Some preferred “overdose,” because it is entrenched in data reporting. Others use “accidental overdose” to underscore lack of intention. (Most overdoses are, in fact, accidental.) News outlets occasionally use both, reporting that a drug overdose took place due to fentanyl poisoning.

Addiction medicine experts note that because most of the street drug supply is now adulterated, “poisoning” is, indeed, the most straightforward, accurate term. Patients who buy cocaine and methamphetamine die because of fentanyl in the product, they note. Those addicted to fentanyl succumb from bags that have more toxic mixtures than they had anticipated.

Ms. Martin, whose son was killed by fentanyl, bitterly agrees. “He was poisoned,” she said. “He got the death penalty and his family got a life sentence.”

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Is extending life by weeks worth the toll some cancer drugs take?

— Doctors push for ‘common-sense oncology’

When a treatment buys a few weeks or months but comes with with a lot of side-effects, then the perspectives of people with cancer may differ, says Dr. Christopher Booth.

People may celebrate a 2-week improvement in survival without acknowledging costs

By Amina Zafar, Christine Birak

Tom Somerville’s decision to stop medical treatment for his end-stage cancer was a personal one.

Somerville, 62, was diagnosed with colon cancer in 2021 that later spread to his liver. He had six months of chemotherapy to slow down the cancer, which he said also left him exhausted with nausea.

The Kingston, Ont., resident decided to take a break from treatment to enjoy a trip with his wife to Victoria.

“Things that you cherish change, right?” Somerville said. “I used to love being out in the bush, but now it is just nice to have a sunny day, sit with my family [and] have visitors.”

Somerville said he came to terms with his prognosis and decided to enjoy the rest of the life he has left, extending the chemo break to a full stop. He said he was relieved to not “feel crappy” from the treatment anymore.

A man stands with a woman holding an umbrella while on vacation in B.C.
Tom Somerville, left, and his wife, Katherine Somerville, enjoyed a vacation in Victoria while he paused cancer treatments.

Dr. Christopher Booth, Somerville’s medical oncologist at Kingston General Hospital, supports him in his decision.

Booth is also part of a group of cancer doctors in Canada and the U.S. who say medications with marginal benefits are overused for patients in the end stage of the disease. The oncologists have started a campaign through their website, journal articles and podcasts encouraging honest conversations about use of the drugs with cancer patients, their families and experts.

The goal of what they call “common-sense oncology” is to prioritize treatments that meaningfully improve survival and quality of life. They aim to address what they see as problems in the field, such as a lack of critical thinking in oncology training, falling standards for drug approvals and avoidance of end-of-life discussions.

Balancing hope and reality

Booth said while there have been incredible advances in cancer treatments in his 20 years of practice, there’s also an unfortunate reality: cancer can’t always be cured. He strives to convey it in a compassionate and clear way.

“Balancing … providing information but also providing hope, that’s the art of cancer care,” Booth said. “Balancing hope and reality, balancing treatment and quality of life and side-effects, that’s the tough part of this job.”

Booth said he thinks everyone would agree that a treatment that helps a patient live for extra months or years is very helpful. But when a treatment buys weeks with a lot of side-effects, then patient perspectives may differ.

In part that’s because the cancer drugs that can shrink tumours alsocome with side-effects, including fatigue, vomiting and hair loss.

A woman with long hair, seated wearing a black top and black glasses.
Not having treatment for cancer isn’t giving up, says Rachel Koven of Kingston, Ont.

Dr. Bishal Gyawali, a medical oncologist and associate professor at Queen’s University in Kingston, was motivated to press for changes when he noticed increased spending on treatments that don’t make much difference in patients’ lives while at the same time agencies didn’t put resources to what’s already been proven to work.

Gyawali previously treated people with cancer in Nepal, Japan, and the U.S. and saw the same trends there.

When attending oncology conferences, Gyawali said presenters would celebrate a two-week improvement in survival from a new treatment. Then, behind closed doors, other delegates would talk about the risks and costs of the drug.

“People are saying is this really meaningful?”

Gyawali aims to normalize asking such questions.

Quality of life and quantity

Rachel Koven’s husband, Ken Koven, was diagnosed in his late 40s with adenocarcinoma, which starts in gland cells of the esophagus tube. His cancer was found where the esophagus meets the stomach.

The father and avid runner treated having cancer like a battle, his wife said. He had nine months of palliative chemotherapy that’s given to relieve the symptoms of cancer and improve quality of life, but not meant to cure the malignancy.

The cancer spread. He then underwent radiation to the brain in Kingston, Ont. In 2016, about 16 months after the diagnosis, he died at age 49.

“For my husband, his hope was anchored in treatment,” Koven said. “However well-rounded the discussions we had, he would have always chosen treatment, and I can’t begrudge him for that because that is where he believed his strength was.”

Now, Koven feels families should ask more questions of doctors, such as:

  • How much time does this treatment offer?
  • What are the real costs and benefits of the treatment?

Koven said not having treatment is sometimes seen as throwing in the towel, but that can be misleading.

A man stands wearing glasses, a striped shirt, suit jacket and conference lanyard in front of a blue backdrop reading American Society of Clinical Oncology.
Dr. Bishal Gyawali wants people to ask whether a two-week improvement in survival is meaningful.

“Not having treatment isn’t giving up,” Koven said. “Sometimes by having treatment you are giving up. You are giving up time with your family. You are giving up a quality of life necessarily for something you are not trading off any extra days.”

Koven wrote an essay in 2018 on her experience as her husband’s caregiver in the Canadian Medical Association Journal. At the time, she was motivated “to contribute to the best possible life in the face of death.”

Now Koven advocates for the oncology field to “recalibrate” toward an emphasis on what brings the person joy rather than only focusing on treating their cancer. Finding novel treatments that will really benefit patients is also important to her.

Seek meaningful answers

Dr. Elizabeth Eisenhauer ran more than 170 cancer drug trials in Canada, the U.S. and Europe. Now retired, Eisenhauer won the 2021 Canada Gairdner Wightman Award for investigating new cancer drugs and delivery approaches, including for Taxol, an anti-cancer treatment.

“It’s a good thing we are having so much interest in finding novel therapeutics for cancer,” Eisenhauer said. “But my goodness, let’s find the answers that matter to patients, too.”

Eisenhauer recalled how in the 1980s, scientists set an arbitrary number as a standard, worldwide indicator of safe tumour shrinkage for early clinical trial research.

After that, measuring whether a tumour grew by 20 per cent on a CT scan, the definition of progression, became an endpoint, or goal, for pharmaceutical companies running randomized trials, Eisenhauer said. Randomized trials are meant to guide whether a drug should be used as a standard of care by physicians.

“You have an answer sooner [using tumour shrinkage], but is it an answer that is meaningful?” she said.

Eisenhauer would like to see cancer clinical trials include more criteria.

“I think common-sense oncology from my perspective as a trialist needs to come from the perspective of trying to be sure that the trials that we design at least can capture the information that will be of importance to those discussions with the patient sitting in front of you.”

Eisenhauer said there aren’t a huge number of game changers in oncology every year, but many are available in Canada. She said costs to patients in terms of side-effects and time coming to the clinic also need to be considered.

A patient receives chemotherapy treatment for breast cancer in France.
Randomized trials are meant to guide whether a physician should use a chemotherapy agent as a standard of care.

Despite that, other Canadian researchers looking last year at use of treatments like chemotherapy or major surgery among more than 151,000 people who died found that a treatment was commonly given — in 41 per cent of cases — in the last 30 days of life but was potentially inappropriate.

So far, Gyawali said the common-sense oncology movement is gaining momentum worldwide and he’s received positive feedback from regulators, physicians, patients and payers.

Tom and Katherine Somerville now take time every day to enjoy moments together, like walking down to the pond near their farmhouse, going for a drive on a sunny day or listening to old tunes.

For them, quality of life includes loving glances.

“You appreciate that moment and you want to take it all in and those are the simple things that really are not so simple,” Katherine said. “They’re the important things.”