Signs You Are Experiencing Disenfranchised Grief

By Melissa Porrey LPC, NCC

Disenfranchised grief is a natural emotional reaction following a loss that is not openly accepted by society. It is normal and expected to grieve after any loss, but not all losses are viewed equally by those around us. Not feeling welcome or comfortable to outwardly mourn or express the emotions that come with a loss can be isolating and can prolong and complicate the grieving process.

This article will define disenfranchised grief through examples, show how to recognize disenfranchised grief, and explain how it compares to other forms of grieving. It will also provide coping techniques and ideas for finding validation in mourning.

What Causes Disenfranchised Grief?

Grief affects everyone differently. Childhood experiences, attachment style (ways we relate to and interact with others), individual definitions of meaning and closeness, and the types of relationships we hold contribute to the ways we grieve and mourn.

In addition to how individuals grieve, culture and societal norms play a role in how we express grief and in defining the acceptable and unacceptable circumstances in which to grieve.

Having social support and validation of the pain that comes with loss allows bereavement to be a productive time of mourning. Grieving is more difficult when a loss isn’t validated by those around us or by society at large, and the feelings associated with the loss can be intensified.1

5 Categories of Disenfranchised Grief

There are five categories of disenfranchised grief, as outlined by Kenneth J. Doka, a mental health counselor who initially defined disenfranchised grief. These are:1

  1. The loss isn’t seen as important by others.
  2. The type of loss isn’t acknowledged or is stigmatized.
  3. Some people are not seen as entitled to grieve.
  4. The circumstances of the death are denied.
  5. The way grief is expressed is judged by others.

The specific circumstances around these definitions vary by culture, community, and individual family norms.

Some examples of loss that may not be accepted by social groups or society include:

  • Pet loss
  • Death of someone who was incarcerated or a former inmate
  • Pregnancy loss
  • Death of someone who was not considered to be in an appropriate or acceptable relationship, such as in the case of an affair or the loss of a same-sex partner in societies where those relationships are not accepted
  • Death of a former spouse

Some losses are not related to death but still cause disenfranchised grief, because they bring significant loss and are not commonly accepted as losses. These include:2

Recognizing Disenfranchised Grief

In Yourself

When grief is disenfranchised, other people don’t recognize the relationship that existed, the loss experienced, or the pain and feelings of the person who is grieving.3 This can be a lonely way to grieve, and it might feel as though it’s not OK to mourn the loss. Experiencing disenfranchised grief usually forces a person to grieve alone and in silence.

In some situations, people cause self-disenfranchised grief. This occurs when we deny ourselves the right to grieve an experienced loss. This can be intentional or unintentional and is characterized by separation from or lack of acknowledgment of the loss.1

In Someone Else

Grief should be expected after any major loss. Grief is natural and normal and allows us to work through the pain of coping with loss. When someone experiences a significant loss that isn’t commonly accepted by society and that person never talks about the loss, the subject of the loss, or how they are doing, they could be experiencing disenfranchised grief.

Societies establish rules and expectations about how to grieve. Even when a person is surrounded by people who care, they may feel isolated and unable to communicate how they are feeling for fear of judgment or lack of understanding. The person likely won’t want to discuss their experience even when directly asked.4

Other Types of Grief

There are many ways to experience grief. Grief is a unique and individual process, and the responses and reactions that follow a loss depend on the person, the circumstances surrounding the loss, the individual’s support system, and other stressors and traumatic experiences from the person’s life.

Grief that naturally follows a loss and allows a person to mourn in a way that brings meaning over time is considered normal grief. Though there is no timeline within which to grieve, in a normal grieving process, emotional reactions usually diminish within the months following the loss.

Sometimes, grief is complicated by different factors related to the individual who is grieving, the surrounding community, and societal expectations. These are some other ways grief is categorized:5

  • Anticipatory grief is grief that is generally expected, such as when a person is an older adult or has been sick for a long time.
  • Traumatic grief occurs when a loss is sudden or unexpected and is followed by feelings of shock and trauma.
  • Complicated grief occurs when the circumstances of the loss prevent the intensity of grief symptoms from lessening over time. This is usually associated with violent or complex losses, such as homicide and suicide.
  • Ambiguous grief happens when a loss does not bring emotional or psychological closure. This occurs either when the person is physically present but psychologically absent, as in the case of dementia, or when the person is psychologically present but physically gone, such as when a person is missing.

How Disenfranchised Grief Differs

Disenfranchised grief is different from other ways of grieving in that the outward expression of grief is not publicly accepted. This puts a person’s feelings in conflict with what others deem to be a real loss or one worth grieving.

Disenfranchised grief can occur even when there are other types of grief present, however. A loss can be anticipatory and also disenfranchised. Similarly, a loss can cause disenfranchised grief that turns complicated over time or that is traumatic in nature.5

What sets disenfranchised grief apart is that it does not bring out sympathy in others. This sends the message that it is not acceptable to feel or express the pain and emotions that naturally follow loss.5

Coping and Finding Validation

Finding validation can be difficult when the loss is not recognized by others. If common rituals like attending funerals and holding remembrance ceremonies are not an option, creating new rituals can bring meaning to the loss and provide a way to cope. Things that allow for honoring the loss, the person, and the relationship can bring comfort and a path to begin healing.6

Talking with a mental health professional can also be a way to find validation and sympathy when grief is disenfranchised. Grief therapy provides the space to talk about the pain of the loss and discover different ways to mourn.

Summary

Disenfranchised grief occurs when family members, social groups, and/or society don’t recognize a loss. This nonrecognition can be of a loved one who died, the relationship that existed, the person who is grieving, or the value of the loss that occurred.

When a person is unable to express their feelings and pain associated with grief, it can prolong the intensity of bereavement, cause feelings of isolation and loneliness, and complicate the natural grieving process. Seeking support from a grief therapist can provide validation and the support needed to recognize and work through the loss.

A Word From Verywell

Working through grief can be difficult even under normal circumstances. If you are grieving a loss that is not recognized or accepted by others, or if you feel you cannot talk about the person who died or the pain you are experiencing with loved ones, you could be experiencing disenfranchised grief.

To work through the most intense parts of grief, it’s helpful to find validation and support, which can come from a grief therapist. Talking with a mental health professional can provide the sympathy and space to process the loss and allow you to mourn in a healthy way.

Frequently Asked Questions

  • When was disenfranchised grief first recognized?

    The term disenfranchised grief was first published by licensed mental health counselor Kenneth J. Doka in the 1980s. Since then, Doka and other bereavement professionals have published many findings on the topic.

  • Why is grief overlooked for some people and validated for others?

    There are many factors that determine whether a person’s grief will be validated, including the type of loss, the relationship to the deceased, societal norms, and family culture and values. Circumstances like suicide, romantic relationships outside marriage, and other stigmatized situations can isolate those who are grieving. This makes them unable to talk about their loss, seek support from others, and outwardly mourn.

  • Is ambiguous loss the same as disenfranchised grief?

    Both ambiguous loss and disenfranchised grief are types of complicated losses that can cause prolonged grieving. Ambiguous loss occurs when there is no emotional closure, and disenfranchised grief happens when a person’s loss is not supported by others.

    Though they are different classifications of grief, a person can experience both at the same time. For example, a person in a same-sex relationship in a place where homosexuality is not accepted would experience ambiguous loss if that person went missing, and disenfranchised grief because the loss could not be openly grieved.

  • How long does disenfranchised grief last?

    Grief does not follow a specific timeline. For many people, grief takes different forms and comes and goes for a long time. For those experiencing disenfranchised grief, the intensity of the feelings from the loss can be prolonged due to not being able to outwardly mourn. For most people, the pain of grief will lessen in the weeks to months following the loss. For those experiencing complicated or prolonged bereavement, the intense feelings of grief could last years.

Complete Article HERE!

Living-Will, Advanced Directives Can Be Saved in a New Video App

By: Kathleen Gaines

End-of-life decisions may be amongst the hardest decisions any family member might have to make for a hospitalized loved one. But with the proper advanced health care directives, it can make those decisions easier and less confusing. Unfortunately, most patients do not have advanced directives, especially those in the younger generations. The reality is that unless someone has a terminal illness or works in healthcare, they may not even know what an advanced directive is.

MIDEO Card is changing the conversation.

A revolutionary new app, MIDEO Card which stands for My Informed Decision on VidEO, is a video advance directive as well as a video medical order for life-sustaining treatment. The video is in the patient’s own words and has been formulated to translate all wishes into medical provider understanding.

What is an Advanced Directive?

Generally, advanced directives are done via a paper form that can be filled out in the hospital or online and printed. These forms discuss life-sustaining medical treatment and prolonging life.

According to the American Cancer Society, “life-sustaining medical treatment is any medical intervention, medication, or anything mechanical or artificial that sustains, restores that would prolong the dying process for a terminally ill patient.” These may include :

  • Breathing machines
  • CPR (cardiopulmonary resuscitation) including use of an AED (automated external defibrillator)
  • Medications such as antibiotics
  • Nutrition and hydration (food and liquids) given through feeding tubes or IVs

Once an advanced directive has been filled out it then needs to be given to your healthcare provider and placed into your health file. This can be problematic, especially in the case of an emergency. If an advanced directive is completed at home and never given to the primary healthcare team, it is possible that no one will know a patient’s true end-of-life wishes. Furthermore, if the patient is taken to a hospital out of state or not associated with their primary healthcare provider, then there will not be accessible to the advanced directive.

This is problematic.

MIDEO eliminates this by creating a digital footprint for the advanced directive and allows all providers access to it regardless of the healthcare system or state. It’s all done with a QR code and smart device.

According to a 2017 study, of 795,909 people in the 150 studies analyzed, 36.7 percent had completed an advance directive, including 29.3 percent with living wills. The proportions of terminal individuals to healthy individuals were similar. Based on this large study as well as others, it is evident that end-of-life discussions are essential to properly care for patients.

“Improving end-of-life care has been a national conversation for some time now, presumably because it will affect all of us at some point and is a very personal matter,” said senior study author Dr. Katherine Courtright of the Fostering Improvement in End-of-Life Decision Science Program at the University of Pennsylvania in Philadelphia.

Why MIDEO?

MIDEO is designed to allow patients to directly speak their wishes with a representative and is stored on a digital identification card.

MIDEO takes the planning and consultation out of the hands of the hospital and hospital healthcare providers. MIDEO has a team of healthcare specialists that work with patients to find the options that are not only personalized but also the best for them and their loved ones.

As hospitals continue to feel the strain of the ongoing pandemic and nursing shortage, there are fewer and fewer resources dedicated to informing patients about advance directives and end-of-life decisions. MIDEO is helping to remove the strain.

Currently, there are three options available for MIDEO Card. Each provides a personalized virtual meeting with a specialist to discuss all aspects of advance directives and end-of-life wishes.

Essential Package (designed for healthy individuals):

  • Includes a standardized guided process with a Qualified Healthcare Professional to create your safety statement
  • 2 Copies of the Identification Cards.

Vital Package (designed for individuals with multiple medical problems or ages 60 & above):

  • Includes a guided process and detailed healthcare evaluation with a Board Certified Physician to create your safety statement
  • 2 Copies of the Identification Cards.

VIP Healthcare Concierge Advocate (designed for Individuals (e.g.: those with cancer) Who Require Navigation Through the Complex Medical System Who Have Specific Goals to Be Achieved): 

  • Includes the Vital Package, but also includes a designated Concierge Physician Advocate who will be available to assist and provide guidance 24 hours a day.

While there is a fee associated with the use of MIDEO Card, most major health insurance plans including Managed Medicare and Medicare with supplemental insurance plans have covered the cost of MIDEO in full or for a small co-pay.

As of January 1, 2016, Medicare-approved billing codes allow individuals to receive Advance Care Planning Education & Counseling. Commonly, this is considered the end of Life planning or counseling.

How It Works?

According to the website, the MIDEO video is accessed by any type of smart device including a smartphone and/or tablet. The camera feature scans the QR code technology on the MIDEO ID card of the patient. The video is then quickly retrieved within seconds in a safe and secure manner. 

MIDEO suggests informing all healthcare providers of the QR code and having it stored in your patient file so that it can be accessed immediately if needed. 

The video aspect is essential to the success of MIDEO and the future of advanced directives and end-of-life planning. Because many states allow individuals to complete advanced directives online without assistance, it is possible that individuals do not fully understand the choices presented to them or that they can make their own that are listed.

“As I like to say, the form is only as good as the conversation and the shared understanding that goes along with it,” said Dr. Rebecca Sudore of the University of California, San Francisco School of Medicine who wasn’t involved in the study.

“Some people do fill out these forms with families or lawyers, and then the forms sit in the dusty recesses of a back drawer and they are not available or shared with family and friends, especially before they are needed,” she told Reuters Health by email.

As Americans live longer, especially with chronic medical conditions, and healthcare continues to make advancements against the fight of once terminal diagnoses, it is essential that individuals make their end-of-life wishes known to not only their families but also to their healthcare providers. MIDEO Card takes away the guesswork. It leaves a lasting gift to families and loved ones having to make difficult decisions.

Complete Article HERE!

What Ambiguous Loss Is and How To Deal With It

A psychologist shares ways to cope with a lack of closure

It’s been more than 40 years since family therapist Pauline Boss, PhD, first coined the term “ambiguous loss” and published her book by the same name.

In its simplest sense, “ambiguous loss” refers to loss without closure. And today, the term has never been more relevant, especially as we continue grappling with the many ways the COVID-19 pandemic has upended our lives.

Psychologist Kia-Rai Prewitt, PhD, delves deeper into this concept, including its original meaning and how it’s especially applicable today.

“Dr. Pauline Boss created this term to refer to a lack of information and closure that surrounds the loss of a loved one,” Dr. Prewitt says.

At its core, ambiguous loss is all about a lack of resolution — but Dr. Boss created categories to differentiate between physical and psychological loss.

Type-one ambiguous loss

Type-one deals with physical loss, like when you don’t know for sure whether someone you love has died or what has happened to them. Think, for example, of a parent whose child has been kidnapped or a person whose spouse has gone missing on military deployment.

Dr. Boss calls this category “physical absence with psychological presence,” a type of ambiguous loss that occurs when someone you love is physically absent under unknown, uncertain or unresolved circumstances.

Examples include loss as a result of:

  • Unexplained disappearances, like kidnapping.
  • War and acts of terrorism.
  • Deportation and genocide.
  • Natural disasters.

This type of ambiguous loss can also come from a loss of contact, even if you know where the person is or what has happened to them. This kind of ambiguous loss includes circumstances like:

  • Divorce.
  • Adoption.
  • Estrangement.
  • Incarceration.
  • Separation due to immigration.

“As an example, think about what happens after a divorce,” Dr. Prewitt says. “You know your ex-spouse still exists, but they are no longer in your life the way they used to be when you were married. That’s ambiguous loss, too.”

Another modern example is the trend toward ghosting — when someone you’re dating just stops responding and falls out of touch, leaving you without answers.

Type-two ambiguous loss

This type of ambiguous loss refers to a psychological loss, including a mental or emotional disappearance (like when someone’s personality has changed so much that they no longer seem like the person you once knew).

Dr. Boss describes it as “psychological absence with physical presence.” Your loved one is physically present, but they’ve changed, whether emotionally or cognitively (or both).

Examples include changes caused by:

  • Alzheimer’s disease and other forms of dementia.
  • Traumatic brain injury.
  • Drug and/or alcohol addiction.
  • Depression or other chronic mental illness.

“A common example I see is when I work with couples,” Dr. Prewitt notes. “A spouse says they want the person their partner used to be, especially if that partner has a mental or physical illness or has experienced a traumatic event during the course of the relationship.”

Why ambiguous loss is so hard to handle

​Usually, closure is an important piece of the complicated puzzle that is grief. It provides us with some way to process what’s happened. “We typically crave closure because our brains are wired to analyze information and our environment,” Dr. Prewitt explains.

When someone dies of known causes, even when it’s sudden or particularly traumatic, we are, at least, able to comprehend that a loss has happened. Death is concrete — but ambiguous loss doesn’t offer any sense of closure.

This is especially true in the case of open-ended disappearances — say, if your child has run away from home or your partner is presumed dead after a hurricane. But there’s also no closure when a parent’s personality changes as a result of Alzheimer’s or when a friend’s mental illness makes them nearly unrecognizable to you.

“When we don’t have all the information, we lose our sense of control, and our thoughts fill in the blanks,” Dr. Prewitt says. “Those thoughts can be terrifying because there is nothing to confirm if what you’re thinking is right or wrong.”

How ambiguity impacts the grief process

“I see ambiguous loss as a type of complicated grief,” Dr. Prewitt says. “You’re often left longing for what used to be or for answers to questions.”

Grief looks different for everyone, and there’s no one “right” way to grieve. But it’s common to move through five stages of grief:

  1. Denial.
  2. Anger.
  3. Bargaining.
  4. Depression.
  5. Acceptance.

People who are grieving a loss go in and out of these stages of grief in no particular order — but when you’ve experienced an ambiguous loss, you may become stuck in any one stage. This is sometimes referred to as “frozen grief” or “grief limbo.”

“It can feel like an ongoing trauma because there is no answer,” Dr. Prewitt says.

And if you’re experiencing type-two ambiguous loss, other people may not even recognize that you’re grieving at all.

“Ambiguous losses can feel isolating because they can be ignored,” Dr. Prewitt says. “This makes it especially difficult for the person experiencing the loss.”

Ambiguous loss and the COVID-19 pandemic

Ambiguous loss has historically referred to individual loss — when a person has disappeared, left or somehow changed. Now, though, so many of us are experiencing loss, and it’s not always centered on a person.

“Everyone has lost something during the pandemic, whether they recognize it or not,” Dr. Prewitt says. “People lost access to social connections, jobs, childcare and being able to go places without doing a risk assessment first. A lot of couples’ relationships either withstood the stress of being together constantly, or their issues were exacerbated.”

In other words, things have changed. And if you wish things could go back to the way they used to be before the pandemic, you’re not alone.

“Humans crave consistency and predictability, so when things are unpredictable, such as the pandemic, we often feel anxious, depressed and isolated,” Dr. Prewitt says.

None of us got any closure on our old way of life before the pandemic forced us to transition into a stressful new one. It seems like this version of life is our new normal, but it’s understandable to experience grief for everything we’ve lost.

Other factors that contribute to ambiguous loss

It’s not just the pandemic, either. Researchers are also looking into how social and political conditions — like climate grief and the trauma of racial injustice — can lead to feelings of ambiguous loss, too.

“For communities of color who identify with Black Americans like Ahmaud Arbery and George Floyd, there is a constant reminder that society views and treats them differently,” Dr. Prewitt says.

Tips for coping with ambiguous loss

If you’re experiencing ambiguous loss, here are some suggestions for dealing with the grief, stress and sadness that can accompany it.

1. Name what you’re going through

The kind of ambiguous loss brought on by the pandemic, in particular, can be a sneaky kind of loss. You might not even recognize your grief for what it is — but now you have a name for it. Sometimes, just being able to put a label on what you’re experiencing can help you begin healing.

2. Work toward acceptance

Acceptance isn’t the same as closure. But in the absence of closure, Dr. Prewitt says it’s important to try to make peace with this new reality.

“It takes work to accept that things are different and may never go back to the way they used to be,” Dr. Prewitt says.

3. Reach out for support

Depending on the circumstances of your loss, other people in your life might realize that you’re struggling, which can be especially isolating. Dr. Prewitt recommends identifying and connecting with family or a close friend who can help support you. And especially in pandemic times, you may be surprised to learn that they’re having similar experiences

You can also look for a support group for people who’ve experienced the kind of loss you have.

4. Look for silver linings

Without veering into toxic positivity territory, try seeing some of the good within the bad. What has come your way — like new friendships or personal growth — that wouldn’t have if your life had stayed the same?  

“It can feel overwhelming and disheartening to know that things won’t go back to the way they were,” Dr. Prewitt says, “but it can also be an opportunity to create new meaning for yourself or with others.”

5. Get involved in a cause

“Some people cope with loss through action, like joining organizations focused on different issues that have personal meaning,” Dr. Prewitt says.

And if you choose to get involved with an organization related to the sort of loss you’ve experienced — say, an Alzheimer’s charity if your loved one has dementia, or a relief organization if you’ve lost someone to a natural disaster — you may also end up connecting with other people who’ve been where you are.

6. Be kind to yourself

Try giving yourself grace and gentleness as you work through your grief. “This is a time for self-compassion,” Dr. Prewitt encourages. “Be kind to yourself when you’re struggling with difficult emotions, the same way you would provide compassion to someone else if they were experiencing what you are.”

When to ask for help

If you find that you’re having trouble coping, look for a therapist who can help you work through your pain. It may be helpful to search for a therapist who specializes in grief or who has training in the particular type of loss you’re experiencing. You don’t have to deal with ambiguous loss on your own.

Complete Article HERE!

Death Is No Laughing Matter.

But on DeathTok It Is.

Americans struggle with talking about death. To remedy that, some hospice nurses have taken to TikTok to soothe people’s qualms with macabre humor.

An unlikely group of influencers on TikTok is using cheeky skits and viral songs to change our relationship to mortality.

By Jessica Lucas

Casual TikTok viewers might think of the app as just a feed of Gen Zers doing viral dances and lip-synch reenactments. But the social network has also provided a space for some unlikely influencers: hospice workers, morticians, and funeral directors. These content creators hope that their comedic takes on mortality will help people who find death hard to discuss, especially during the pandemic, in which more than 900,000 Americans have died. DeathTok, as it’s called, is a corner of the platform where skits about end-of-life care, funeral arrangements, and death-worker mishaps bring comfort to those suffering through grief and loss, and clarity to those who are curious about an oft-avoided topic.

Our inability to plainly discuss death and its circumstances stems, in part, from the American ethos of self-reliance, according to Cole Imperi, a well-known author and speaker on the subject of death and thanatology. “We value the story of somebody coming to the U.S with $5 in their pocket and they make it … needing nobody,” she told me over Zoom. The end of life, Imperi explained, sits in direct opposition to this philosophy: As people age and approach death, they rely on others for help. The fear of lost autonomy (be it one’s own or a relative’s) makes planning for, grieving, and processing death hard for many Americans. “We don’t have a lot of practice with knowing how to talk about something that’s painful, scary, or difficult all the way through,” Imperi said. She believes that the humor DeathTok offers can be a useful tool for pushing through this discomfort. “Having humor is critically important when it comes to death and dying,” she said. “Humor is necessary. Humor helps us heal.”

Although some find death-based comedy unpalatable, many TikTok viewers agree with Imperi’s estimation that the levity of a well-placed joke can sometimes make difficult situations easier. When I spoke with Penny Hawkins, a 59-year-old hospice quality-control manager from Washington, she explained how she uses comedy to educate others. “If you’re talking about a really heavy subject like death and you’re able to put kind of a funny spin on it, it makes it a little more palatable. It’s not quite so scary,” said Hawkins, who has more than 300,000 followers on her nurse_penny TikTok account. She encourages viewers to be curious about human anatomy by explaining what happens to failing bodies. For example, to tackle the misconception that hospice patients need to stay hydrated, Hawkins danced to the viral song “Just Water,” by the TikTokers Bryansanon and Tisakorean. To caption her video, she wrote: “If your dying person isn’t taking fluids, that’s ok. Their body is shutting down and doesn’t need it.” The chorus, which repeats the line “It’s just water!,” serves as a whimsical background to Hawkins’s blunt explanation.

Three scrolling tik tok feeds with a hospital gurney and ekg machine in background.

Hawkins has also used macabre comedy to illuminate the realities of hospice care. In one video, about the use of morphine at the end of life, an exasperated Hawkins appeals to the camera and feigns anger at a family who wants to withhold morphine from a dying loved one out of fear that they’ll become addicted. “They’re suffering and they’re dying,” Hawkins’s caption reads. “Addiction is the least of their worries.” Hawkins told me hospice patients aren’t typically at risk of developing an addiction, because many of them are not in end-of-life care long enough to become addicted (for instance, the median length of stay for Medicare recipients in hospice is about 18 days). As uncomfortable and dark as the video may be, it underscores Hawkins’s overall message that learning more about dying bodies and end-of-life care can only help.

Beyond the medical aspects of death and dying, some videos also warn people about one of the largest hurdles after a loved one’s passing: logistics. Lauren Taylor, a 28-year-old former funeral director who lives in Florida, shares farcical family stories on TikTok—such as a quarrel between a mistress and a wife over the burial of a shared lover—to make the point that planning is key. “Being preplanned, having everything written down ahead of time, and letting others know what your wishes are is so important,” she told me over the phone. Taylor, who asked to use her maiden name to protect her family’s privacy, has more than 400,000 followers on her account, @lovee.miss.lauren, and said she has witnessed how traumatic unplanned funerals can be for families and wants to inspire forethought. “These comedic situations where you kind of wonder, Is this real? It happens more often than people think,” she said. “It can be comical to talk about after the fact, but when you’re living in the moment, it’s the most stressful thing ever.”

While DeathTok has been a useful tool for families navigating their relatives’ mortality, it’s also helped death workers themselves cope with the demands of their job. Julie McFadden, a 39-year-old hospice nurse in California, told me that of her close-to-700,000 followers, her fellow medics are the loudest voices in her comments section. “Any of my videos that are more dark, that could be slightly offensive to some, I’m always 100 percent supported by nurses,” she said. In one video, she recounts the time she noticed that a patient was dead even though the rest of their family did not (set to the audio of a person screaming “Don’t worry!” in a panicked tone). The clip spurred other nurses to share similar stories, and one thanked her for her “positive outlook” on such difficult situations. McFadden told me that though nurses are taught how to care for and save patients, many aren’t coached on how to handle death psychologically. “As a community, it’s nice to come together and make light of the things we know are messed up,” she said. “What else are we going to do if we don’t laugh about it?”

When death workers make these short, funny videos, they provide more than just comfort to their colleagues or the bereaved. Their TikToks can be soothing even for patients dealing with a terminal diagnosis. Val Currie, a 32-year-old undergoing treatment for Stage 3 recurrent metastatic cancer, told me that DeathTok provides a much-needed release, and has helped her have discussions with her partner about end-of-life care. “I’m learning to laugh at the process,” she said. If viewers can laugh at death, then they can talk about it. And if they can talk about it, healing may not be too far behind.

Complete Article HERE!

Are near-death experiences just psychedelic trips?

Our brains might be flooded with the hallucinogen DMT as we die, leading to vivid dreams.

By Ross Pomeroy

  • Near-death experiences have been reported for thousands of years.
  • One possible explanation is that our brains are flooded with a hallucinogenic, DMT, as we approach the moment of death.
  • Researchers observed a spike of DMT in the brains of rats that suffered a cardiac arrest.

For many people, the thought of dying fills them with dread and trepidation. What will it feel like? Will I be scared? Does everything just go black? Assuaging some of those fears, emerging science suggests that the elderly, dying brain often grants us a comfortable demise. And it does this through dreaming.

Accounts across history describe meaningful dreams and visions that arrive at the closing of one’s life. All too often, these experiences are brushed aside as byproducts of brain-addled delirium or side effects of medication. But in 2014, researchers at Daemen College and at Hospice Buffalo asked 63 patients admitted to hospice care over a period of 18 months for their perspectives on any dreams or visions that they might be having. Participants described most of them as a source of personal comfort. In their dreams, hospice patients reported being in the presence of deceased loved ones, preparing themselves for a long journey, or seeing dead spouses, siblings, or parents waiting for them.

“[These dreams] bring about a sense of peace, a change in perspective or an acceptance of death, suggesting that medical professionals should recognize dreams and visions as a positive part of the dying process,” Emma Badgery wrote for Scientific American.

Are near-death experiences just psychedelic trips?

Following these dreams at the twilight of life are more vivid ones that could arrive at the moment of death, itself. Science points to our final moments being quite a mentally sensorial finale. For starters, there are the accounts of people who have been to the brink of death and back. Many of them report having wild visions, which have been termed “near-death experiences” (NDEs). Philosopher and psychiatrist Raymond Moody coined the phrase almost a half-century ago and discovered a few common elements of NDEs: a bright light, a sense of detachment from the body, feelings of security and warmth, and encounters with mystical beings. To religious people, this experience might seem like being welcomed into an afterlife, while nonreligious people might just enjoy the trip.

Likening NDEs to “trips” is actually a reasonable comparison. A highly-cited 2018 study provided participants with low doses of the hallucinogenic drug N,N-dimethyltryptamine (DMT) in a controlled setting, then asked them to describe their experience. Their descriptions were uncannily similar to collected descriptions of NDEs. We are now learning that there is a good reason for that.

It turns out that DMT is widely present in the mammalian brain. In 2019, researchers at the University of Michigan not only found the compound in various locations in rat brains, but they also discovered neurons with the two enzymes required to make it. Moreover, the neurons seem to produce DMT at levels comparable to those of other key neurotransmitters like dopamine, which drives pleasure, and serotonin, which stabilizes mood.

DMT has also been found in small amounts in human brain tissue and larger amounts in cerebrospinal fluid, a clear fluid that surrounds the brain and spinal cord. Is it possible that DMT floods the human brain at death, causing vivid dreams and NDEs?

The University of Michigan researchers witnessed this happen in rats. They directly measured brain levels of DMT as rats suffered cardiac arrest and saw the substance spike up to ten times above baseline levels, enough to trigger psychedelic effects. If a similar increase also occurs in humans, it might just account for NDEs and vivid dreaming near death. But a larger dose might be necessary in alert, healthy subjects.

According to lead scientist Jimo Borjigin, a molecular and integrative physiologist:

“During near-death states, the brain activity that supports non-essential activities, such as walking, is severely reduced. So far scientists have studied experiences when people are fully awake, when they have many other types of brain activity going on. So in order to have a psychedelic experience, you need high levels of DMT that rise above the other noise that our brain is generating. At the near-death state, the level of DMT needed to contribute to a near-death experience may not be at the same level as for normal people having a normal psychedelic experience.”

So just a small hit of brain-produced DMT could make our final minutes on Earth a psychedelic adventure.

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Loyal dog and veteran pass away within hours of each other

A dog’s loyalty to its owner is unshakeable. Even during the toughest times, they will remain by their human’s side.

By iHeartDogs.com

Gunner, an 11-year-old lab, was an extremely loyal pooch.

He has never left Daniel Hove’s side. Everywhere his human went, he was there. They turned out to be hunting buddies and best friends, too.

When Daniel received his pancreatic cancer diagnosis, Gunner was with him.

Even though he was a big dog, he’d go to Daniel and the two would cuddle up together. They’d spend an entire day like that.

“They were best buddies till the end. They were hunting buddies, they went everywhere together,” Daniel’s daughter, Heather Nicoletti, said in an interview Kare 11.

The Air Force veteran and his dog were literally inseparable.

Eventually, though, Gunner fell ill.

This was a bit expected, as the family noticed how incredibly in sync the two were.Daniel’s daughter, Heather, shared that she and her family more or less based their expectations of her dad’s daily health off of his dog.

“My dad was unresponsive, the dog was unresponsive. So once we saw how the dog was doing–he wasn’t moving much anymore, not doing well– we knew, it was coming.”

One day, Gunner grew listless.

His arms began to swell and he fell more ill. At that point, Heather knew that it was time to say goodbye to her dad’s dog.

She called the clinic she used to work at. When she got there, they put her dad’s long-beloved dog to sleep. He was right there beside him as he passed.

Within just an hour and a half, Daniel was gone too.

Knowing what happened to Gunner, the family couldn’t help but feel that the loving veteran would be gone soon as well. They did everything together, after all.

“Gunner could not be without my dad. I think he chose to go with him,” Heather continued.

However, they didn’t expect them to pass away within such a short time of each other. Losing both of them within the span of 90 minutes dealt a heavy blow to the ones that Gunner and Daniel left behind.

The family was devastated.

It’s always so sad to say goodbye to someone close to your heart. For Heather, she took comfort in the fact that her father never really had to say goodbye to his devoted, loving, and loyal dog.

In a sense, his passing couldn’t have gone any better. He wouldn’t be making the trip to the afterlife alone. His best friend was now with him even into eternity.

Now, Daniel and Gunner get to be together forever, pain-free.

In that sense, at least, the family was able to spare them from the pain of saying goodbye to each other.

“I had said I don’t know what’s going to be more traumatic for him. To try to take him away to end–to put him to sleep– to end his suffering, or if you let him live through dad dying. I think either way it’s going to kill him. We knew they were going to go together. We just didn’t know it was going to be hours apart,” -Heather shared.

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When the Death Certificate Omits the True Cause of Death

Having accurate death records saves lives.

By Jane E. Brody

A combination of journalistic curiosity and advancing years prompts me to read obituaries regularly. I routinely check for ages and causes of death that can help inform what I write about and how I live.

Increasingly, I’ve noted in published reports that people are often said to die of “complications of” some disease, rather than the disease itself.

For example, in an obituary published on Jan. 9 in The New York Times for Dwayne Hickman, who starred in the television sitcom “The Many Loves of Dobie Gillis,” a spokesman attributed his death at 87 to “complications of Parkinson’s disease.” And another, published two days earlier for Lani Guinier, a legal scholar and champion of voting rights, stated that she succumbed at 71 to “complications of Alzheimer’s disease.”

What, I wondered, does that mean? How is it recorded on death certificates? And does it result in accurate mortality statistics needed for assigning priorities for medical research and allocating resources?

I looked up the complications of Parkinson’s and Alzheimer’s diseases. Someone with Parkinson’s disease may have poor balance and die from a fall, for example, but Parkinson’s is actually the underlying cause of the death. Similarly, people with Alzheimer’s disease often have difficulty swallowing and may accidentally inhale food and develop a fatal pneumonia; such secondary infections are listed as the cause of death for as many as two-thirds of these patients.

The result can be seriously misleading information, said Dr. James Gill, the chief medical examiner for the state of Connecticut. While pneumonia may be the proximate cause of death, Alzheimer’s disease, which is why the patient developed pneumonia in the first place, is the “specific underlying cause that started the chain of events and should be listed as the cause of death,” he said.

In fact, one study from 2014 suggested that the real death rate from Alzheimer’s in 2010 may have been more about six times higher than the number of deaths reported to the Centers for Disease Control and Prevention. Likewise, if someone with Covid-19 develops pneumonia and dies, their death certificate might say that pneumonia was the cause of death, but in reality it was a coronavirus infection.

I asked Dr. Gill, who heads the College of American Pathologists Forensic Pathology Committee, why this matters. “In order to prevent deaths, we want to know what’s causing them, which influences medical practice and the awarding of research grants,” he said. “If many dementia deaths are hidden, the disease is not getting enough funding.”

More dramatically, Dr. Gill added, “Having accurate death certificates saves lives. It enables us to identify new and trending diseases and take appropriate action.” If someone is living or working in a building with a poorly installed or maintained furnace, for instance, they may be exposed to toxic levels of carbon monoxide that could eventually cause fatal cardiac and respiratory failure. The cause of death might be recorded as cardiac arrest, but in fact was a result of carbon monoxide poisoning, and the presence of the faulty appliance would likely be missed and could result in further casualties.

In a research review published in the magazine Today’s Geriatric Medicine, Dr. Emily Carter, a geriatrician affiliated with the Maine Medical Center, and co-authors noted that the data submitted on death certificates can affect families with regard to life insurance, estate settlement, genetic risk factors and finding closure. They estimate that major errors, like incorrect cause or manner of death, occur in 33 to 40 percent of death certificates that are completed at academic institutions like their own in the United States.

An analysis of death certificates at their own institution found that cardiac or respiratory arrest were incorrectly entered as the immediate cause of death on 11 of the 50 documents they reviewed. As Dr. Gill said, “Everyone who dies, dies of cardiopulmonary arrest. The critical question is: Why did this happen? Let’s say someone dies of a stomach hemorrhage. What caused it? Stomach cancer, an ulcer or what?”

There are many reasons for the high rate of inaccurate or incomplete death certificates, starting with the meager attention paid to the subject in medical school and the hectic pace in many medical settings. Speed is sometimes dictated by the need to release a body to a funeral home for burial or cremation.

The C.D.C. has estimated that 20 to 30 percent of death certificates, though not necessarily inaccurate, “have issues with completeness.” The agency stated that heavy workloads, insufficient information about a death or inadequate training can result in death certificates that are incomplete or inaccurate.

Furthermore, many deaths are certified by coroners, who are elected or appointed to their positions and may have bachelor’s degrees in forensic science, but are usually not doctors. They can be subject to political or family influence and may fail, for example, to list opioid overdose as a cause of death. Even when death certificates are completed by medical examiners, who are usually doctors, they may not be trained in forensic pathology and could miss the real cause of death. A death following a fall, for example, might have been accidental, or it could have resulted from an underlying disease or even homicide.

According to a blog post from Womble Bond Dickinson, a trans-Atlantic law firm with headquarters in London, “the death certificate may be critical in a lawsuit” to help determine “the nature of the death,” factors that contributed to it, when it occurred and illnesses that may have played a role.

If the death was the result of a medical illness, the death certificate is usually completed by the physician in charge, Dr. Carter and her colleagues wrote in their review. However, they emphasized, a medical examiner should certify all other causes, including deaths related to hip fracture which could have resulted from an accident, and deaths related to a history of malicious injury that could be a homicide.

Unfortunately, despite what you may see in films and on TV, autopsies today are performed less and less often. Families often have to pay for them out of pocket. Between the high cost of autopsies and the increasingly limited resources to do them, they have become a dying breed.

Families can often benefit from knowing the real cause of a relative’s or housemate’s death. Might there be a payout from life insurance? Is there a home problem, like a slippery floor, lack of grab bars in the bathroom or a faulty furnace, that needs correction? Is there an inherited medical condition that can be mitigated to avert further casualties? Could malpractice have caused or contributed to the death?

If a death certificate contains errors that warrant correction, the sooner that’s done the better. In New York State, the funeral firm or medical certifier can usually help with a correction request that’s made within six months of the death. Beyond six months, you would have to fill out an application for a correction.

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