Category: Talking about death

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I understand why people are wary about assisted dying

— But it gave my mother a dignified end

Protesters gather in London to call for a change in the law to support assisted dying.

The Dutch legalisation spared her further misery. We don’t take euthanasia lightly; we’re just grateful to have the option

By

My mother, Jannèt, was 90 years old when she ended her life by means of euthanasia. For years she had been suffering from numerous serious and painful conditions that made her life miserable. She always worried about her health and was terrified of what the future undeniably held in store for her: more pain, more dependence on others, more suffering, more desperation.

On 20 June 2022 at 2pm she was visited by a doctor and a nurse. They had a last conversation with her, during which the doctor asked her if euthanasia was still what she wanted. My mother said yes. She had already decided that she would take the drink herself instead of being injected. She didn’t want to mentally burden the doctor more than necessary.

I was impressed by my mother’s courage in the face of death. She was completely calm, almost cheerful. Before the procedure started, she spoke briefly to us, her three daughters. She told us how it was important to take care of the Earth wisely, to recycle as much as possible and to look after one another. She then drank the small cup in one gulp. She fell asleep very quickly and 15 minutes later the doctor told us her heart had stopped beating. A long and tormented life had come to an end.

The country in which I live, the Netherlands, was the first in the world to legalise euthanasia in specific cases. That was in 2001. Assisted dying has become generally accepted in our country. We talk about it openly and we consider the possibility when situations call for it. We are grateful that this option exists, because it prevents so much pointless suffering. But we never talk about it lightly. Assisted dying has always remained something huge, something you don’t resort to lightheartedly.

Renate van der Zee’s mother Jannèt
‘I was impressed by my mother’s courage in the face of death.’ Renate van der Zee’s mother Jannèt

As a matter of fact, you can’t. In the Netherlands it will always remain a criminal offence to end a life. Exceptions are made only when a whole range of requirements are met. First of all, the patient must ask for it themselves and must therefore be mentally capable of asking for it. In addition, there are all kinds of due care requirements. For example, the doctor must be convinced that the request for assisted dying is voluntary and that the patient has carefully thought it through. The doctor must also be convinced that the patient’s suffering is hopeless and unbearable. That they can no longer heal, that it is not possible to alleviate their suffering and that there is no reasonable other solution. At least one other independent doctor must be consulted. That independent doctor will discuss the situation with the patient and form his or her own opinion about the situation.

Assisted dying is allowed only if a person is suffering owing to a medical cause, not if someone is simply tired of life or feels that their life is complete. My mother didn’t feel that her life was complete. There were still things that made her happy. She loved flowers and plants; she loved politics; she followed the news. But because of her deafness, incontinence and many other conditions she became socially isolated. Visits from friends became too much for her, and at a certain point even phone calls became impossible.

Walking became very difficult, and she grew afraid to go outside. She always loved to wander through a neighbourhood park, especially in springtime, when the bluebells and lilies of the valley bloomed abundantly. But she was no longer able to go there, not even in a wheelchair. She always enjoyed reading and watching nature programmes, but those things too became increasingly difficult. Her numerous ailments and her lack of mental resilience to deal with them made a normal daily existence impossible. And there was no prospect of improvement.

My mother’s euthanasia was a long process. Five years before her death, she told her GP that assisted dying was what she wanted if her life became unbearable. Over the years, my older sister discussed this wish with her during long conversations. She also took charge of all the conversations that were necessary before permission was finally given.

My mother wanted to celebrate her 90th birthday before she took leave of life. Her last birthday fell on Easter, which she regarded as meaningful. But what kind of birthday gift can you give to someone who will soon be gone? My older sister came up with the idea of making a book in which all her loved ones wrote down what she meant to them, or reminisced. She was very happy with that.

We sat close to her when she died. My younger sister took my mother’s hand and she held it tightly. The older sibling said in a soft voice, “You can close your eyes now, Mum.” That’s what my mother did. I sat there and tried not to cry. It’s not easy to witness your mother drinking a deadly potion and dying after 15 minutes.

The next day was the first day of summer. The sun was shining, the weather was beautiful. I woke up with the pain that my mother was gone. But also with a feeling of relief and deep gratitude that, after such an incredibly difficult life, she had been granted a painless and dignified death. I knew we had given her a great gift.

Complete Article ↪HERE↩!

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Does Morphine Speed Up Death At The End Of Life?

— What We Know

By Jennifer Anandanayagam

Morphine, an opioid medicine that is prescribed for pain relief, is not without controversy. When there are strong concerns about substance abuse and addiction to the narcotic, people often wonder things like “Is it safe to take morphine?” or “How long does morphine typically stay in your system?”

If you were to talk to hospice care workers, you’d probably hear that this powerful pain relief medication also gets a bad rap in their world. One of the common concerns is if giving morphine to your dying loved actually brings about their death sooner.

According to palliative care professionals, when proper dosage and timeliness of administration are followed, there is no basis for this fear. In fact, according to Hospice of the Chesapeake‘s Director of Education and Emergency Management, Elisabeth Smith, giving the right amount of morphine to someone who’s having trouble breathing might actually help them breathe better. For someone with breathing difficulty brought on by conditions like terminal lung disease, “it can feel like you’re drowning, gasping for air,” explained Smith. “Morphine opens the blood vessels allowing more blood circulation within the respiratory system. This makes it easier for the lungs to get the bad gases out and the good gases in. The patient becomes calm, their breathing slows down.”

Morphine doesn’t speed up death

It’s easy to see how the notion of morphine bringing death sooner to someone who’s dying came about. We can blame creative outlets like movies and books and also the lived experiences of some people who report seeing their loved ones’ lives slip away while on the opioid.

But morphine, when administered correctly, can bring a lot of relief and improve the end-of-life experience of someone, mainly because it blocks pain signals and helps with a lot of distressing sensations someone might be feeling in the final moments before death (per Crossroads Hospice & Palliative Care), like shortness of breath, pain, restlessness, and agitation.

Palliative care professionals are well-versed in how to start, sustain, and increase (when needed) morphine dosage according to the requirements and comfort levels of their patients (per Canadian Virtual Hospice). When someone is first put on the narcotic, the dose is very low and this dosage is maintained until the person gets used to it. Only a large dose can prove harmful (a fatal overdose might require 200 milligrams). That being said, morphine, like other pain medications, comes with its own set of side effects like drowsiness, digestive issues, stomach cramps, and weight loss (per Mayo Clinic). As explained by Elisabeth Smith from Hospice of the Chesapeake, sometimes suffering can prolong death too and it can look like the person passed away sooner when morphine was administered to them, simply because their discomfort was taken away and death was allowed to come in its own time.

Should you be concerned about administering morphine?

Ultimately, no one can answer that question but you, but hospice care workers urge loved ones to be correctly informed of the intricacies of why morphine is given in the first place and how it’s done in a professional setting. 

Pain is part of the dying process and if pain medications such as morphine can relieve some of the suffering, it might be one of the kindest things you can do for your loved one. You might be giving them a little more independence to be able to eat and drink without discomfort, sleep better, and even maintain better cognitive capabilities (per Vitas Healthcare). Ask questions from healthcare professionals and have them explain what the drug does exactly. Sometimes, having the right knowledge can assuage some of your fears. 

Dr. Daniel Lopez-Tan from Legacy Hospice shared that the idea that morphine speeds up death could have arisen because the opioid is commonly associated with end-of-life care. “The patient is dying of other causes and morphine only softens the symptoms of the last moments of life … One of the effects of morphine called respiratory depression does not occur with small, controlled doses of short-acting opioids, especially when under the supervision of a healthcare professional,” added the doctor.

Complete Article ↪HERE↩!

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Why California Doesn’t Know How Many People Are Dying While Homeless

Eduardo Adrian Aviles Garza, known as ‘Monkey,’ prays at a memorial in December commemorating the 201 unhoused people who died in Santa Clara County in 2023.

By Vanessa Rancaño

Nearly a decade ago, David Modersbach had what he thought was a straightforward question: How many unhoused people had died that year?

The grants manager and his team at Alameda County Health Care for the Homeless knew people were dying on the streets, but they wanted more than anecdotal evidence; they wanted data that could show them the big picture and help them hone their strategies.

They queried the coroner’s bureau and were stunned by the response: only a single death had been reported.

“We realized there’s a lot of work to do,” Modersbach said.

What followed was a bootstrap campaign to fill the data gap. It took years, and the work was sometimes lonely, often tedious and consistently heartbreaking. When the team finally released its first report in 2022, detailing deaths from 2018–20, they counted 195 people in Alameda County who died while homeless in 2018, plus another 189 people with recent histories of homelessness whose housing status couldn’t be verified at their time of death.

a man with glasses and long hair, wearing a flannel shirt, sits behind a computer
David Modersbach works in his office in Oakland. Modersbach has spearheaded Alameda County’s efforts to count the deaths of unhoused residents.

As more Californians have fallen into homelessness — a number greater than 181,000 at last count (PDF) — more have died while unhoused, but the state’s ability to track these deaths and assess the scope of the problem hasn’t kept pace.

Spurred in part by Alameda County’s efforts, which are considered a national model for the field, the state recently began taking steps toward collecting this data. In 2022, California added a field to death records for homelessness status, and this year, a law went into effect that empowers counties to set up homeless death review committees to determine the root causes of homeless mortality.

California is among several jurisdictions across the country seeking this data. The pandemic put a spotlight on the health vulnerabilities accompanying homelessness, and that has led to growing national interest in the topic, said Barbara DiPietro, senior director of policy for the National Health Care for the Homeless Council. A recent study from researchers at the University of Pennsylvania and NYU found the death rate of people experiencing homelessness increased 238% between 2011 and 2020.

“One of the things that hopefully we took away from COVID is that homelessness is a public health issue,” she said. “Not only is living unhoused very dangerous and high risk for people experiencing homelessness, this isn’t good for communities either.”

Researchers said the data is critical in assessing whether the state’s public health interventions for people on the streets work.

“That is how we work to change things,” said Dr. Margot Kushel, director of the UCSF Benioff Housing and Homelessness Initiative. “One of the problems with not reporting it is that it makes it harder to act.”

But getting statewide — let alone national — data detailing the number of unhoused deaths requires meticulous reporting on the part of local agencies. In the case of Alameda County, it was a system Modersbach had to build from scratch.

How they count

For each homeless mortality report, Modersbach and his colleagues first scour thousands of county death records, searching for clues that suggest homelessness: words like “encampment,” “tent” and “shelter.” They then cross reference that list with a database of everyone in the county who has experienced homelessness in the past five years — itself a bespoke repository that draws on the agency’s healthcare data and records from the county’s shelter and homeless assistance programs. To capture anyone they might miss, they cull information from service providers, media accounts and a public online portal for submitting tips about deaths.

Since they began tracking homeless mortality, the team has traced an 80% increase in the number of deaths, which rose from 195 in 2018 to 351 in 2022, the most recent year for which data was reported. Over the same period, homelessness in the county jumped by nearly the same amount — or 77% — from 5,496 people to 9,747.

Behind the numbers are snapshots of how and where people are dying. A body found in a car. An overdose at an encampment. People mangled by cars or trains; others charred. Modersbach finds the tableau at once unsurprising and shocking.

“We see the same inequities in our mortality data that are reflected in homelessness,” he said. Black people are overrepresented, comprising 48% of the unhoused population and accounting for 44% of the deaths — though they represent only 19% of deaths in the county’s general population.

People who are unhoused die at five times the rate of those with housing and do so more than two decades sooner — at an average age of 52.

The data shapes decisions

Most of the deaths could be prevented, said Amy Garlin, Medical Director for Alameda County Health Care for the Homeless.

“You could say almost all of these deaths are preventable if you go far enough upstream,” Garlin said.

The largest share, 44% of the deaths among the homeless population, were caused by acute or chronic medical conditions, like heart disease, cancer, diabetes and infections. Some of those appear to have been more immediately avoidable, Garlin said. “If these people had had medical care, they may not have died this year.”

At an encampment along East 12th Street in Oakland, Angel Gonzalez, 40, remembered the friends he’d known there who had died. An asthma attack claimed one, exposure another and a third succumbed to a fever. Though Gonzalez said he didn’t know what had caused the fever, he said people are often sick, and rat bites are common.

“Health-wise here, it’s bad,” he said.

There’s frequent violence, too. Gonzalez described a drive-by shooting that killed one friend and wounded others. But what claims most people in the camp, he and others said, is overdoses.

“The fentanyl is killing mostly everybody,” Gonzalez said, explaining that people unwittingly use fentanyl-laced meth or other drugs. “It’s kind of scary.”

a man stands in front of some cars and tents and belongings in an encampment
Angel Gonzalez, 40, at an encampment on East 12th Street in Oakland, has seen many deaths at the camp, including from fevers, exposure, asthma attacks and gunshot wounds. But the most common cause by far is drug overdoses.

The mortality data compiled by Modersbach’s team reflects this, with an alarming rate of overdose deaths among unhoused residents that is 44 times the general population’s. In response, they’ve expanded their harm reduction services, focusing on naloxone distribution and installing dispensers in shelters.

At the East 12th Street camp, Gonzalez pointed out a purple dispenser on the street corner. Though Modersbach’s team had not installed it, it still proved lifesaving, Gonzalez said, when a friend recently used one of the naloxone sprays to reverse an overdose.

Alameda County Healthcare for the Homeless received a grant from the Centers for Disease Control and Prevention in 2023 to fund overdose response, a key part of their strategy to reduce mortality, and Modersbach credits their data for helping them get it.

In Minnesota, the only state with a statewide robust system for tracking homeless mortality, public health officials took a similar approach. A report on deaths between 2017 and 2021 showed unhoused people in the state were 10 times more likely than the general population to die of an overdose. Shortly after that data was released in 2023, state lawmakers passed drug overdose prevention legislation that expanded harm reduction and housing programs for people experiencing homelessness, decriminalized drug paraphernalia — a first for the U.S. — and funded “safe recovery sites” that offer clean needles, fentanyl testing and will eventually offer supervised drug consumption.

“Having the data was really useful in making the case for some of those things, both with legislators and with the public and advocates,” said Josh Leopold, senior advisor on health, homelessness and housing at the Minnesota Department of Health.

Alameda County’s latest homeless mortality report is now prompting the team to focus on how to extend palliative care services to unhoused people with terminal illnesses. Garlin estimates almost one-fifth of those who died in 2022 would likely have been eligible for hospice care.

What’s next in the ‘labor of love’

Modersbach’s team is also working to automate the most tedious aspects of compiling the county’s homeless mortality report and aims to launch a public dashboard later this year that will make information available quarterly.

“The biggest challenge is that we do not have timely data that we can act upon more quickly because of the workarounds that we have to do to get an accurate count,” Modersbach said. “We’re almost always looking backwards.”

The county’s latest tally, for 2022, was released at the beginning of 2024.

Santa Cruz, San Diego, San Mateo, Sacramento, Los Angeles and San Francisco are among the counties with varying degrees of reporting on homeless deaths. In Santa Clara County, an early champion of this work, a public dashboard tracking homeless mortality is updated nightly. A spokesperson for the Medical Examiner’s Office credited its partnership with a third-party vendor with allowing it to return results so quickly. So far this year, the dashboard listed 51 deaths.

Across the country, about two dozen jurisdictions have homeless mortality reports that are issued with some regularity, according to DiPietro of the National Healthcare for the Homeless Council, which tracks these efforts. But because the reporting isn’t standardized, it’s difficult to draw comparisons between them, she said.

a computer screen shows a tally of numbers
Statistics on homeless mortality in Alameda County on David Modersbach’s computer in his office in Oakland on March 15, 2024.

In California, despite the recent efforts to improve this tracking, limited resources will likely continue to hamper the reporting of homeless deaths. Since 2022, when the state added a field on death reports to indicate a person’s housing status, Modersbach has seen some evidence people are filling it out, but he worries many unhoused deaths will continue to go uncounted around the state because the funeral directors, coroners and physicians filling out the reports don’t often have the resources to determine whether someone was housed.

“This is a lonely, costly battle to just put all this information together, not a funded mandate,” he said. “It’s kind of a labor of love.”

In counties with well-established systems for tracking these deaths, Modersbach hopes AB 271, by Assemblymember Sharon Quirk-Silva (D-La Palma), will make a difference. The new law allows counties to create homeless death review committees and access sensitive information about people who died. The data, which includes medical, mental health and criminal records, goes beyond what Modersbach and his team have so far been able to collect, giving them greater insight into the circumstances surrounding a person’s death.

Alameda County assembled its death review committee last year, bringing together officials from several county agencies, homeless service providers and formerly unhoused people with the aim of finding ways to keep more people experiencing homelessness alive.

“It’s just getting started,” Modersbach said, “but this is the future for us.”

Complete Article ↪HERE↩!

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Incurable but not hopeless

— How hope shapes patients’ awareness of their advanced cancer prognosis

Nurturing hope among patients with cancer and their caregivers is possible and includes coping strategies and exploring realistic goals.

By &

Hope is defined as the expectation of achieving a future good. Patients with cancer, whether it is curable or not, prioritize cure as their highest hope.

Patients with incurable cancer wish to be informed about their disease and its treatment, but also need to maintain hope. This inner conflict can impact how they process information about their prognosis.

Prognostic awareness

Physicians are ethically obligated to inform patients about their prognosis so that patients can make cancer treatment decisions that are consistent with their values. When oncologists talk to patients about prognosis, they tend to talk about the extent of the disease (localized or metastatic), the goal of the treatment (curative or palliative) and the estimated survival (short months or many years).

Communication about prognosis can be challenging due to physician factors such as skill in discussing bad news, and patient factors such as denial. Some patients with incurable cancer, who are aware of their prognosis but haven’t accepted it, will say the treatment goal is cure.

Previous research indicates that less than half of patients with incurable cancer are aware of their prognosis. This is often attributed to a failure of communication.

But are patients truly unaware, or are they aware and not accepting of their prognosis? If inaccurate prognostic awareness is due to denial in spite of adequate communication from the oncologist, then interventions to improve communication may be ineffective, misguided or even harmful.

Patients with incurable cancer are more likely to receive end-of-life care concordant with their preferences when they have accurate prognostic awareness. Inaccurate prognostic awareness can lead to conflicting treatment decision-making between patients and oncologists, delayed referral to palliative care and more aggressive care at the end of life.

In a study of patients with advanced lung cancer, those who received early palliative care and had accurate prognostic awareness were more likely not to choose intravenous chemotherapy in the last two months of life, which would have been futile and worsened the quality of their end-of-life care.

How prognostic awareness is measured

Measuring prognostic awareness in patients is challenging because their responses may reflect their hopes rather than their true beliefs. In a recent publication in the Journal of the National Cancer Institute, our research team synthesized data from 52 studies measuring prognostic awareness in patients with advanced cancer.

In the majority of studies, prognostic awareness was conceptualized as a binary entity: patients were asked if their cancer was curable, and their responses were coded as either accurate prognostic awareness (patients knew their cancer was incurable and responded that it was incurable) or inaccurate prognostic awareness (they thought it was curable and responded that it was curable).

A few studies included in our review improved upon the binary conceptualization by incorporating hope in the assessment of prognostic awareness.

These studies asked patients about their belief and their doctor’s belief about prognosis and found that about a third of patients will hold onto hope for a cure (responding that they believe their cancer is curable), even when acknowledging that their doctors were treating them with palliative intent. This discordance was attributed to poor coping.

The role of hope

Hope is a recognized coping strategy in patients with cancer. However, “false” hope may have detrimental effects. Patients may refuse to believe their prognosis and demand aggressive treatments that may cause more harm than benefit.

In the context of advanced cancer, the relationship between hope and hopelessness is balanced by acceptance, which can re-direct hope to new goals beyond cure, such as hope for connection with others and enjoyment of daily pleasures.

Nurturing hope among patients with cancer and their caregivers is possible and includes coping strategies focusing on what can be done (such as control of symptoms) and exploring realistic goals such as dignity and intimacy. Family and spirituality play an important role in supporting patient hope.

Incorporating patient hope into prognostic awareness

We improved upon the binary conceptualization of measuring prognostic awareness by incorporating patient hope, creating a trinary concept: patients who are aware and accepting of their prognosis; aware and not accepting; or truly unaware.

We propose that patients who are aware and accepting should be offered psychological supports to address any negative effects on mood; those who are aware and not accepting should be offered adaptive coping strategies to support their evolving prognostic awareness; and those who are truly unaware will benefit from interventions such as decision-aids and communication training. Early palliative care consultation may be beneficial at each stage of prognostic awareness.

This trinary conceptualization may guide future research to improve our understanding of the impact of hope in the setting of serious illness and help patients receive the right supports in their cancer journey.

Complete Article ↪HERE↩!

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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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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 that is true about aging is illuminated on a walk

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I was out today in the early morning walking with a close friend of 64 years named Shelley Adams. Despite some huge losses over time, she is always overtly positive. I don’t normally like this in a person. I make a rare exception for her. We hike several times a week beside our local creek, now a twisting, flowing stream that rushes over rocks, mint and twigs.

Rainer Maria Rilke was only partially right when he wrote that “life holds you in its hands and will not let you fall,” because both Shelley and I, like all older people, have been dropped. But life also at some point pulls you back to your feet. What do you do in between, during times of loss or general dread? My friend Tom Weston, a Jesuit priest, always reminds me, “We do what’s possible.” I hate that.

Okay, fine: What is possible? The practical, simple and kind. We work, love and help others as best we can, gawk at nature, rest. Is that it? Pretty much.

This is a little disappointing, but age teaches us that kind, simple and practical are enough, even in the face of the worst things we’ve lived through: suicides, mental illness, odious leaders, sudden death. My friend Don was called one day by an aging and suicidal friend. His friend asked, “What is the point of it all?” After a moment, Don replied gently, “Mornings are nice.” And, wildly, it was enough. His friend improved.

I cannot hike the uphill trails here anymore because of my hip, so we do what’s possible: take four 10-minute laps back and forth along the creek. Everything that is true about aging appears to me on these walks.

On our first lap, Shelley and I catch up. We’ve always been talkers, readers, movie lovers. What was true about us at 6 years old is true about us now. We gossip, laugh a lot, quibble. We looked so similar as small kids, with green eyes and white-blonde hair. We still do. We’re built about the same. I’m a bit taller and smaller-boned, but otherwise we could be sisters. And like sisters, we can annoy each other, and weaponize silence. Families, sigh.

I grew up at her house. Her mother was my other mother, who saw how amazing I was on the inside, not just how much better I could be doing. Shelley and I went through childhood and puberty together, played competitive tennis for years as partners and then didn’t see each other much for 40 years. We raised kids, buried parents; sad, scary things have happened to us both, as they have to everyone by a certain age. Now, we’re slower, less busy, a bit goofy.

For instance, this morning, while searching for the word “coaster,” the closest I could come up with was “coffee pad.” She laughs so hard when I say this, she has to cross her legs, and then almost loses her balance.

By the second lap, our bodies have loosened up, and we talk a bit less and look around a lot more, and listen. The creek is the place where the water and the land are in constant conversation. My vision is often blurred by dry eye, but there is a grace to myopia: I’m less fixated.

We walked this morning in raincoats because it was drizzling off and on, even as the sun shone through faintly. In my family, we always announced during a sun shower that it must be a monkey’s birthday somewhere. In Akira Kurosawa’s “Dreams,” a mother tells her child, “The sun is shining through the rain. This is the time when foxes have their weddings.”

Like most old friends, we can bobble along without talking for stretches. I listen for the soft orchestral music of the woods on either side of the path. After scanning the illuminated green scrim of trees ahead and far away, I pull closer in on individual trees, all arms and elbows and long legs. The trees just stand around, as is their wont. The drizzle plays them. What instruments are they? Mostly woodwinds, maybe oboes, some flutier, and then dark, dark trees, like kettle drums, like patches of life.

Because we go back so far, Shelley and I know each other’s souls and shadows, and each other’s major screw-ups, and there is comfort in this. Also, we have made mistakes with each other that have felt like betrayals. This happens in families. We have gotten so mad that we have ditched each other on the trail and shouted to each other’s back, “Don’t you dare walk away from me.” Actually, that was only me. We take breaks, make up.

By the third lap, my hip has begun coughing quietly to get my attention. It would like to go home now. My vision is even more blurry because of the drizzle and thin light, added to the dry eyes. This is part of what it means for me to be alive still, the blinky vision. Paradoxically, I see more. Now, instead of sharp focus, there’s an appreciation of shifts in light that reveal the mutability of the world. The light sometimes changes minute by minute, and with it we perceive changes in the energy around us, above us, inside us. It moves our attention outside our squinty, judgy little selves.

We point out dark-eyed Oregon juncos to each other and finches, the males with their glorious red headdresses and chests, the females in their faded brown bathrobes. We talk about spiritual things and people we hate — as she puts it, “people we’re allergic to, bless their hearts.’” We talk about our scattered minds: This morning, I was struggling to read some tiny print in a book, and, without thinking, I touched the printed page to pinch it out and make it bigger. Eeesh, I thought: Scary! But I was gentle with myself about it.

My hip has really begun to ache by the final lap. We talk and limp along. Easily half of the people in our conversations have passed on, all four parents, both of her younger siblings, dearest friends. We know that death won’t be so hard. We’ve seen many people through the end of life. It’s never dramatic, like Snagglepuss staggering around onstage clutching his throat. It can be rough, and then one slips over gently to whatever awaits. My old pastor told me it is like going to bed on the living room floor and waking up in your own bed.

Age is giving me the two best gifts: softness and illumination. It would have been nice if whoever is in charge of such things doled them out in our younger years, but that’s not how it works. Age ferries them across the water, and they will bring us through whatever comes.

Complete Article ↪HERE↩!