Tag: Education

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How to Help a Loved One With Alzheimer’s or Dementia

By Victoria Pelham

Watching a loved one face dementia is often heartbreaking and disorienting.

They may forget where they are, repeat themselves, or get confused and agitated. Over time, as memory disorders damage cells in the brain and nervous system, they’ll need someone to care for them. Their speech, personality and thinking can also shift. There might even come a day when they don’t recognize you.

It’s called “the long goodbye.” While groundbreaking new medications could slow Alzheimer’s disease progression, there is still no cure for the estimated 6.7 million Americans with the condition, according to the Alzheimer’s Association.

On average, a person with dementia will live about 10 years or more after diagnosis, said Zaldy Tan, MD, director of Cedars-Sinai’s Memory and Aging Program, medical director of the Jona Goldrich Center for Alzheimer’s and Memory Disorders, and the Carmen and Louis Warschaw Chair in Neurology. Knowing what to expect can help you guide your loved one through those years with dignity.

Respect their wishes

Speak to your relative as early as possible in their illness, while they can still make decisions, about their plans and desires for end-of-life care and their finances—and honor them fully, Tan said.

“Just because they have dementia doesn’t mean they don’t have the right to live the way they choose to,” he said.

Losing independence can be one of the most challenging parts of a memory disorder.

“The trick is knowing how they liked to live before their illness,” he added.

When caring for or visiting with a relative with dementia, try to continue familiar activities they enjoyed. Did they often spend time with friends? Schedule regular meetings with one or two friends weekly or monthly. Did they have a sweet tooth? Then don’t cut out all sweets. Instead, space them out with healthier fruits and vegetables.

“Just because they have dementia doesn’t mean they don’t have the right to live the way they choose to.”

Dementia patients lose short-term memory first

In its initial stages, Alzheimer’s disease often causes patients to lose household or personal items, such as glasses, or to skip important appointments and tasks.

Families can help by offering cues, including placing labels on drawers, cabinets and doors to tell what’s inside and using calendars for medication schedules, meals, doctor’s appointments or due dates for bills.

While neurological diseases block these newer memories, old ones can resurface.

“Sometimes people revert to the past because that’s what’s accessible to them,” Tan said.

Their house and loved ones look different than they remember and therefore unrecognizable, and they might try to return to that past life in an attempt to “make sense of the world,” he explained.

Meet your loved one in their truth

There’s no need to correct them every time they believe or say something inaccurate—and it can do more harm than good.

If the person thinks they’re going to see a friend who died 10 years ago for a poker party, it will just upset and confuse them to mention the death. They’ll also likely forget within a few minutes.

“What does it accomplish?” Tan said. “They may not have the capacity to understand. Their reality is different from yours.”

Play along or change the topic, he suggested.

Use simple, direct and slow communication with yes and no questions (asked one at a time) and eye contact—in a quiet place with few distractions, the Alzheimer’s Association recommends. Visual and sensory signals like touch or pointing can also help you engage.

Complete Article ↪HERE↩!

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Not sure how to talk with family about hospice and end-of-life care?

— Here’s a start.

by Connie Ducaine

My family member was clear: She wanted her life to end without extreme measures — to go when it was “her time” with no life support, no CPR, no intubation.

Though my family and her spouse knew this and loved her dearly, the reality of letting her go and following her wishes without “doing more” became difficult as her condition progressed. At the time of her death, medical interventions had sustained her life for several years — against her wishes.

Unwanted, aggressive medical care at the end of life can not only rob you of a peaceful death, it can also place an enormous financial and emotional burden on your loved ones. Fortunately, advances in healthcare delivery at end of life, such as hospice and hospital-at-home options, are combining with more candid and open discussions of end-of-life care to reduce the number of Americans who die hooked up to machines in hospitals against their wishes.

But it takes more than industry shifts and education to ensure that you or your loved one have a desired end-of-life experience. If you want to avoid end-of-life hospital stays, some proactivity is required.

1. Know what documentation you need

What if you were in a car accident? How would you consent to, or decline, mechanical breathing intervention? Advance directives — which can include many different types of documentation — are more than just planning for far-off end-of-life scenarios.

An advance directive should account for any scenario in which you are unable to speak for yourself.

An advance directive should account for any scenario in which you are unable to speak for yourself and need a healthcare proxy to be your voice, whether at the end of a long battle with cancer or after being rendered temporarily incapacitated by a skiing accident. Everyone needs such documentation, not just the sick and elderly.

The documents that set out what a hospital, elder care community or other caregiving entity should and shouldn’t do on your behalf can vary by facility and state, and the methods for ensuring they are considered legally binding can also vary.

2. Designate a healthcare proxy and be real about your choice

The legal and healthcare system will decide for you if you don’t designate a healthcare proxy yourself, with your spouse being the default and adult children second. That’s a pretty solid default, but your closest loved ones may not always be the best choice

Ask yourself: Will they be able to let me go after a long life when I’m ready to rest? Yes? Lovely. But what if I’m in a car accident tomorrow and life support is offered? Will it be fair to ask this particular person to focus on such decisions? It’s quite possible. But it may be kinder and more prudent to say, “I love you, and so you’re not the one to make these decisions. I want you to be holding my hand when I take my last breath, not deciding if I should be on life support.”

For single people without children, it is imperative to have a detailed advance directive.

End-of-life decisions are particularly fraught for unmarried people. While the healthcare system does look for legally binding end-of-life wishes documentation, if no such documentation is found, there’s a possibility that a physician would expend unwanted efforts to extend your life. In extreme cases, the hospital ethics board could become involved in decisions you may have wanted to keep within your circle of loved ones. For single people without children, it is imperative to have a detailed advance directive.

3. Use free resources to plan with your family or doctor

Contrary to popular assumption, you don’t necessarily need an attorney to complete an advance care plan — though it may be advisable in specific circumstances. If you do choose to hire support, weigh that cost against the costs of not planning — which can include unplanned stays at nursing homes, costly interventions that may not result in extending life in a positive way, or family disputes over your end-of-life wishes.

Every state has free, downloadable documents for advanced-care planning available for their residents. If you find them challenging to navigate or understand, your physician can also guide you to social workers and other support. The secure online portal. My Living Voice is one example of a free resource that helps simplify the process of documenting your advance directive. It can help you to think through who your proxy should be, to document your preferences for care during a medical crisis or life-extending care, and to make those wishes both legally binding and known to your physicians, your insurance company, your healthcare proxy and your family.

Prioritize discussing an advance directive at the start of your next physician appointment with a simple ask: “I’d like to do an advanced care plan. How should we go about that?”

4. Share your plans

Too frequently we assume our designated healthcare proxy will “just know” that they are the proxy and how you feel about what decisions will need to be made. Too frequently, that simple communication and documentation doesn’t happen. If the role comes as a surprise to them in the midst of a health crisis (or even an anticipated health event), it can cause undue stress on someone you love.

Another common scenario: You have a living will, but it’s in a file in your closet, completely inaccessible to those who need it most, like your physician

Actualizing your end of life wishes requires that your advance directive is documented, communicated and accessible.

Actualizing your end of life wishes requires that your advance directive is documented, communicated and accessible. If required in your state, get it notarized. Communicate its contents with your loved ones and doctor. Provide your loved ones and healthcare providers with copies, both paper and digital if possible. Furthermore, if you have children, make your plans and proxy designation clear to each one of them to save them from agonizing disputes. Consider the right time to have these conversations with your family based on your unique family dynamic and set a time for that discussion.

Not sure how to start the conversation? Print this article and say, “I was reading this, and it made me think. Can you all read it too and then we can talk?” Legally documenting your wishes can provide your loved ones with peace, structure and protection at a time when they might have their head in their hands, saying, “I don’t know what to do.” Give them the strength and confidence that helps them take the actions you want taken.

Complete Article ↪HERE↩!

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When a Dying Friend Chooses to Keep Her Distance

— A death doula explains how to respect and accept different end-of-life choices

By Lee Woodruff

I was on the other side of the world when I got the text. “Did you know Karla is dying?” my friend wrote. “They called in hospice and she only has a few days to live.”

My enjoyment of a long-planned vacation with my husband suddenly came to a screeching halt in my brain. How could this be? I’d spoken to Karla * a few months ago and we’d celebrated the news that she was pronounced cancer-free. We’d gabbed away for almost an hour, catching up on kids, her future plans and the challenges with chemo, all with her signature optimism and honesty.

I was never someone Karla would have counted in her inner circle. We were in different places in life, my youngest kids still home at a time when she was enjoying dinners out and weekends away. I’d met her more than 20 years ago as part of a group of moms who sat on the sidelines at their kids’ games and drove one another’s children to playdates and sleepovers. Life had moved us to different cities, and a year or more would easily go by without seeing one another. Any time we spoke, we’d always pick right up where we’d left off. She was that kind of friend.

Listening to the relief in Karla’s voice on that last, long-ago phone call, I recalled that we’d talked about a getaway weekend with girlfriends at the beach and rebooting that group dinner we’d canceled when her doctor unexpectedly discovered a small, pesky tumor. The last of it, she’d said.

When communication stops

For the past two years, Karla had been throwing everything she had at the disease, using a combination of the finest cancer care, physicians and hospitals, with holistic medicines, organic foods and juicing. Nothing that contained any chemical or synthetics was allowed on or in her body. Karla, or so we thought, had won.

How had this rosy picture gone into a death spiral so quietly? It wasn’t so much the shock that the cancer was back. Live long enough and you understand that cancer is a sneaky thief. Anyone who has experienced a brush with cancer never fully lets their breath out. But still…. Days to live? How had someone who had brought us along so fully on the journey, who had grabbed life by the throat and been honest and transparent about her illness gone so quiet? How could we, her friends, not have known?

Next came the wash of guilt. Each person responds to illness or injury so differently. There is no one playbook or template. My style has always been to take the cues from others and to give everyone space to do what was comfortable. But now, knowing I wouldn’t make it back in time to see her, I regretted showing up at her door.

When my journalist husband was injured by a roadside bomb in Iraq 18 years ago, my instincts were to immediately pull the shades down from the outside world. The prognosis was so devastating, I wanted all my energy to tend to him and help our kids process what was happening. I drew my circle tight, initially letting in mostly family and a few trusted friends who helped with critical roles to move life forward. I understood shock and trauma, but it was hard not to personalize it, even though I knew that was ridiculous.

Loss is a part of life

At a certain stage of life, loss becomes a theme. And there is no question that when something strikes out of the blue, a sudden diagnosis, a death, accident, or a spouse who leaves, we cannot help but think of ourselves. How would we handle it? How will we handle it when it’s our time to die? I’d seen people around me die in many different ways, from flinging open the doors and having a party to closing the curtains and going quietly, as Karla had done.

My in-laws never wanted to talk about dying or even do much in the way of preparation. My mother talked about it frequently and matter-of-factly, especially toward the end. She had every detail prepared and outlined, but she lost so many opportunities to live in the moment. There is only so much we can control. What would I choose when it was my time? It was impossible to know.

End-of-life choices

Alex Rosen, 42, from Armonk, New York, is a death doula. Her job is to support, guide and provide companionship and comfort for those at the end of their life. Ideally, Rosen works with people from diagnosis through the transition to the end of their life, from their emotional state to the physical setting, whether it be in a home or hospital.

“How we choose to be and exist at the end of life is our choice and our personal journey,” she says.“When possible, it should look and feel how a person wants it to, within the confines of the medical system.”

Part of the work Rosen does as a doula is helping the person and their family accept death and make it feel as comfortable and safe as possible.

“In our society and culture, talking about death is so taboo. So many things are said privately and behind closed doors,” she says. “Part of being alive is understanding that all of us are going to die. The more we can talk about it, the more we can begin to accept it.”

One of the insights I gleaned from talking with Rosen was the potentially harmful language we use around “battling” disease as a society. While comments about “waging war” against cancer can rally a patient to summon energy and desire to combat a disease, if the disease “wins,” there can be a sense of letdown.

“There’s a societal mentality around losing,” Rosen says. “And people who thought they’d ‘beaten’ the cancer or had the potential to, can experience a feeling that they didn’t fight hard enough, weren’t strong enough, that their body failed them. That mentality can bring a feeling of shame and failure rather than a sense of calm and peace at the end of a physical life.”

Karla was a competitor; I could imagine her devastation as she received the grim news from her doctor after a scan that revealed the cancer was back. The story didn’t sound right. From completely cancer-free to riddled throughout her body? But then again, this wasn’t information I had any right to know. This was Karla’s story to tell and to handle any way she chose. She had already been through so much.

The aftermath

I’m still processing Karla’s loss and the way in which we all learned about her dying. I’m still shocked on some level. The news feels like a rug that got pulled out from under me and others who knew her. And of course, there is still so much guilt and remorse over what I would have done differently, had I known. But guilt is a useless emotion, especially when it comes to death.

Karla wouldn’t have liked all this hand-wringing from her friends, and that thought comforts me. I am also consoled by the knowledge that she chose this. I know that this was the way she wanted it to go down because there were many opportunities to do it differently.

You take the good with the bad, I can imagine Karla saying. And I’ve had a pretty wonderful life.

My hope for Karla is that she got to experience death on her terms. By all accounts, she did.

Complete Article ↪HERE↩!

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Why Dying People Often Experience a Burst of Lucidity

— New research shows surprising activity levels in dying brains and may help explain the sudden clarity many people with dementia experience near death

By Jordan Kinard 

Long the fixation of religions, philosophy and literature the world over, the conscious experience of dying has recently received increasingly significant attention from science. This comes as medical advances extend the ability to keep the body alive, steadily prying open a window into the ultimate locked room: the last living moments of a human mind.

“Around 1959 humans discovered a method to restart the heart in people who would have died, and we called this CPR,” says Sam Parnia, a critical care physician at NYU Langone Health.  Parnia has studied people’s recollections after being revived from cardiac arrest—phenomena that he refers to as “recalled experiences surrounding death.” Before CPR techniques were developed, cardiac arrest was basically synonymous with death. But now doctors can revive some people up to 20 minutes or more after their heart has stopped beating. Furthermore, Parnia says, many brain cells remain somewhat intact for hours to days postmortem—challenging our notions of a rigid boundary between life and death.

Advancements in medical technology and neuroscience, as well as shifts in researchers’ perspectives, are revolutionizing our understanding of the dying process. Research over the past decade has demonstrated a surge in brain activity in human and animal subjects undergoing cardiac arrest. Meanwhile large surveys are documenting the seemingly inexplicable periods of lucidity that hospice workers and grieving families often report witnessing in people with dementia who are dying. Poet Dylan Thomas famously admonished his readers, “Do not go gentle into that good night. Rage, rage against the dying of the light.” But as more resources are devoted to the study of death, it is becoming increasingly clear that dying is not the simple dimming of one’s internal light of awareness but rather an incredibly active process in the brain.

What is terminal lucidity?

For decades, researchers, hospice caregivers and stunned family members have watched with awe as people with Alzheimer’s or other forms of dementia suddenly regain their memories and personalities just before death. To their family members it might seem like a second lease on life, but for many experienced medical workers, it can be a sign the end is near. Christopher Kerr, chief executive officer and chief medical officer at the Center for Hospice and Palliative Care in Buffalo, N.Y., has studied the lucid visions of several hundred terminally ill people. He says these events “usually occur in the last few days of life.” Such “terminal lucidity” is defined as the unexpected return of cognitive faculties such as speech and “connectedness” with other people, according to George Mason University’s Andrew Peterson, a researcher of bioethics and consciousness who co-authored a study of the phenomenon commissioned by the National Institutes of Health.

This connectedness goes beyond the return of lost communication ability and situational awareness. “One thing that seems to be quite profound for family members who observe lucidity is something we call the ‘old self’ emerging,” Peterson says. “There seems to be clear evidence that they’re aware not merely of their surroundings … but additionally understanding what their relationships to other people are”—be it the use of a nickname or a reference to a longstanding inside joke.

As surprising as these events might seem, they are quite common. “Our study wasn’t a prevalence study,” says Jason Karlawish, a gerontologist at the Penn Memory Center and senior principal investigator of the NIH study. Nevertheless, he adds, “what we found is lucidity was more common than it was the exception in dementia patients, which would suggest that the idea of it being terminal is not entirely correct.” Instead he suggests that episodes of lucidity should be seen as part of the “disease experience” rather than as aberrant events. “We’ve actually found that a variety of these episodes occurred months, even years, before the person died,” Karlawish notes. Even so, many experts including Kerr and Parnia agree that most of these episodes are associated with the approach of death. “It’s almost like they’re preparing themselves to die,” Parnia says.

The potential implications of these widespread, temporary cognitive resurgences are profound. “It suggests there may be neural networks that are remaining, and/or pathways and neural function, that could help potentially restore cognitive abilities to individuals we otherwise think are permanently impaired,” Peterson says.

Nevertheless, research into this phenomenon is still in its early phases. “We don’t actually know what’s going on in the brain during the dying process that may in some way connect to these episodes,” Peterson says. Despite this uncertainty, other research into brain activity near or at the time of death could provide scientists and clinicians greater insight into some of the processes occurring in the diseased and dying brain.

What happens in the brain as people die?

In a study published in Proceedings of the National Academy of Sciences USA in May, researchers at the University of Michigan observed a surge of organized brain activity in two out of four comatose people who were undergoing cardiac arrest after being removed from life support. This work built on more than a decade of animal research, including a 2013 PNAS study that revealed a similar surge in synchronized brain activity in rats exposed to a cardiac toxin and a 2015 study in which rats were killed by asphyxiation. In all of these investigations, the researchers found that gamma-wave activity surged within the first few minutes of cardiac arrest and then ceased. Gamma waves are a frequency of brain wave typically associated with wakefulness, alertness and memory recall.

Jimo Borjigin, a neurologist and an associate professor of molecular and integrative physiology at the University of Michigan, was involved in all three studies. The surge of gamma waves in dying subjects was particularly intense in a brain region Borjigin refers to as the “posterior cortical ‘hot zone,’” located near the back of the skull. Some other researchers believe this region may also be essential to conscious experience. The parts of the brain in this area are related to visual, auditory and motion perception—a phenomenon Borjigin believes is involved in the out-of-body experiences reported by people who come close to death and recover. She adds that gamma-wave activation patterns akin to those observed in the comatose people are associated with activities that include the recognition of a familiar image—such as a human face—in healthy people.

In both the human and animal studies, the subjects’ brain showed a spike in activity after the sudden reduction of oxygen supply, Borjigin says. “It starts to activate this homeostatic mechanism to get oxygen back, either by breathing harder or making your heart beat faster,” she adds. Borjigin hypothesizes that much of the surge in more complex brain activity observed in humans and animals undergoing cardiac arrest is also a result of the brain attempting to reestablish homeostasis, or biological equilibrium, after detecting a lack of oxygen. She further speculates that these survival mechanisms may be involved in other changes in cognition surrounding death. “I believe dementia patients’ terminal lucidity may be due to these kinds of last-ditch efforts of the brain” to preserve itself as physiological systems fail, Borjigin says.

NYU Langone’s Parnia agrees that the brain’s reaction to the loss of oxygen is at least partially responsible for lucid experiences surrounding death. Between 2017 and 2020 Parnia led a study called AWARE II, in which researchers monitored the brain activity of more than 500 critically ill people in the U.S. and U.K. who were receiving CPR. The patients were exposed to audiovisual stimuli while undergoing CPR to test their memory of events after cardiac arrest. Those who survived were later interviewed about how aware they were during the resuscitation process. According to Parnia, one in five survivors reported lucid experiences that occurred after their heart stopped. The AWARE II team also observed an unexpected spike in brain activity during CPR, he says. “Within 20 seconds of cardiac arrest, the brain flatlines,” Parnia says. Yet “usually within five minutes—but it could be longer—we’re seeing a reemergence of a transient period of brain electricity.” He adds that the frequencies of brain activity observed are similar to those associated with conscious experience.

Parnia believes the dying brain loses the usual suppression mechanisms that allow us to focus on individual tasks during our day-to-day lives. “When you die, your brain is deprived of oxygen and nutrients, so it shuts down,” Parnia says. “This shutting down process takes away the brakes…, and suddenly what seems to be happening is: it gives you access to parts of your brain that you normally can’t access…. All your thoughts or your memories or your interactions with everyone else come out.” But he stresses that the experiences of people undergoing cardiac arrest are lucid, not merely hallucinations. “They’re not delusional,” Parnia says of the resuscitated people he studied, and what they’re experiencing is “not dreams or hallucinations.” Although his previous studies focused on resuscitated critically ill people, Parnia believes that terminal lucidity in people who are comatose or have dementia may be the product of a similar process. He is currently participating in a study on the latter phenomenon.

A full explanation for the conscious experiences of dying people remains elusive. But research increasingly paints a picture of death as an incredibly active and complex process—and, perhaps more importantly, “a humanized one,” as Kerr describes it. As for people with dementia, Karlawish says that rather than assuming their consciousness has been irrevocably changed, “we should still pay close attention to their mind because some aspects are still there, though they may be quite damaged.”

Complete Article ↪HERE↩!

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‘The hardest and most beautiful conversation I’ve ever had’

— how end-of-life storytelling on TikTok helps us process death

By and

In a recently viral TikTok series, creator Ali Tate Cutler spends time with her terminally ill grandma who has made the choice to end her life through euthanasia.

While sharing start-of-life stories – such as ultrasound pictures or childhood milestones – is commonplace, posting end-of-life “journeys” online has users conflicted.

Such stories raise questions of autonomy, vulnerability and privacy, but are ultimately useful in changing how we talk about preparing for death.

@alitatecutler Replying to @Matthew This was the hardest and most beautiful conversation ive ever had. Healing for both parties. I had resistance to Euthanasia before this, but after being with her and hearing her, I no longer do. ❤️ #euthanasia #finalfarewell #ondying ♬ multiverse – Maya Manuela

Dying, virally

In Cutler’s series of videos, they show off their outfits before their “last lunch” together. Cutler’s grandma “Bubbie” gives life advice, and they talk through their thoughts and feelings about the euthanasia process.

Cutler’s videos are divisive. Many commenters criticise the attention gained through this subject, commenting, “Why would you publicise this? So wrong.”

However, some recognise it as an important story to tell and reply with their own stories about loved ones, showing kindness to Cutler’s family. Some recent comments have said:

This needs to be regular practice. Thank you for sharing your story.

It’s a blessing to be privy to conversations like this.

Sending her love on her next adventure. Safe travels to a beautiful soul.

It’s telling that many commenters thank Cutler and mention being “privy” to a usually private moment; we hear far fewer end-of-life stories than start-of-life stories.

Talking about death and dying

As scholars who research health, death and grief, we know there can be stigma and silence around end-of-life stories, despite an underlying obsession with death which pervades our media and social circles.

Experts in the field, such as those working in palliative care, call for more open conversations and stories about dying. They argue that not doing so is hindering happier deaths.

Mentioning death and happiness in the same breath may seem like an oxymoron. It’s natural that death and dying bring feelings of worry, fear, grief and regret. Those who talk about death and dying publicly (as we can attest as researchers in these fields) are often labelled grim, maudlin and even “clout-chasing”.

These reactions are understandable – we are biologically and socially conditioned to fear death. Our brains “shield” us from the reality of death, leading us to imagine it as something which happens to others rather than ourselves.

The “other people” we often imagine dying are elderly people. They can face infantilisation and assumptions that they are forgetful or incapable of making choices and speaking for themselves. Maturity of age, experience, autonomy and storytelling capabilities are overlooked.

Commenters assume Cutler is milking her grandma’s death for “clout” rather than enabling her grandma to tell stories which are important.

Cause to be cautious

Concerns of safety and vulnerability are legitimate and, of course, not all those at the end of their lives can tell their own stories. As life narrative theorist Paul John Eakin states, the breakdown of adult life and memory brings us “face to face with the end of an identity’s story”.

However, assuming that all elderly or dying people are beyond constructing stories of their identities or lives is folly. We must share end-of-life stories – safely, collaboratively – or risk oversimplifying the complexity of dying and denying the autonomy of dying people to share their feelings.

Out of pages and into our screens

End-of-life storytelling isn’t new, autothanatography – writing about one’s own imminent death – is an established literary genre.

This unique genre not only helps us process death (our own or a loved one’s), but also normalises anticipatory grief (grieving before the fact). Australian authors such as Cory Taylor and Georgia Blain have penned their own deaths.

In Dying: a memoir, Taylor writes:

I am making a shape for my death, so that I, and others, can see it clearly. And I’m making dying bearable for myself.

Similarly, at the end of Blain’s memoir, The Museum of Words: a memoir of language, writing and mortality, Blain acknowledges the power of having written her own life and death, stating,

This miniature is my life in words, and I have been so grateful for every minute of it.

As writers and creators like Cutler demonstrate, the end-of-life stage can be difficult and heartbreaking, but is also a time to reflect. Autothanatological stories, whether written or digital, are a chance to “shape” death and to contemplate the past and the future at once.

The platform is the message

Backlash aimed at Cutler may be due to her platform of choice. TikTok can be denounced as an app for young, vain people creating dance videos and “thirst traps”.

But content about dying is in demand, as evidenced by popular sub-categories “DeathTok” and “GriefTok”. The juxtaposition between lighthearted posts and stories about dying on the “video dance app” can be an adjustment.

Cutler, a Victoria Secret model, posts both kinds of content concurrently. Some users may find this jarring but it demonstrates that loss is an integrated part of life, not something separate. TikTok and similar sites are ripe for developing such nuanced conversations and even cultural practices around death.

Sites like TikTok create a unique space for end-of-life narratives to reach vast audiences through visual, auditory and algorithmic timelines, suggesting content, and encouraging engagement. Users interact with one another, and explore the complexity and inherent contradictions in reflecting on a life while preparing to lose the person who lived it.

As Cutler responds to a commentor, “This was the hardest and most beautiful conversation I’ve ever had”.

These narratives are moving rapidly from the pages of memoir to the instant accessibility of our mobile phones and we must make conscious efforts to be open to diverse stories about dying.

If we interrogate how we feel when we encounter challenging or surprising end-of-life stories, we can broaden the ways we think and talk about dying, and, indeed, even celebrate happy moments among the sad.

Complete Article ↪HERE↩!

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‘Dying is not a failure.’

— Why and how to prepare for death.

Author Michael Doring Connelly sees the care of elderly people as the biggest problem in healthcare.

By Jessica Hall

A new book examines death and dying in modern America.

After several decades of working in the healthcare industry, Michael Doring Connelly saw how the the insurance industry and the medical industry are often at odds with the realities of life and death.

Connelly served as chief executive of Mercy Health, one of the nation’s largest health systems, from 1994 to 2017 and previously served as an executive with the Daughters of Charity National Health System (now the Ascension Health System) and has experience with healthcare systems in Germany, the United Kingdom, Denmark, Sweden, and Spain.

Connelly spent five years writing “The Journey’s End: An Investigation into Death and Dying in Modern America,” published by Rowman & Littlefield, to discuss ways to reform healthcare in America, educate and empower consumers to advocate for better care around dying and explain how more care doesn’t equal better care.

MarketWatch: Why did you write this book?

Michael Doring Connelly: I spent a lifetime in healthcare trying to reform things and didn’t have much success. With the book, I tried to target what to improve and the care of elderly people is the biggest problem in healthcare.

MW: What’s the biggest mistake our society makes around death and dying?

Connelly: It’s a confluence of forces. Everyone is afraid to die. The healthcare systems sees dying as a failure. But if you’re in old age, dying is not a failure. It’s a natural progression. People will say “Do everything possible to save Mom” and it’s a terrible thing–it puts the patient through hell. Healthcare providers feel compelled to do this. The payment system encourages it. To do everything possible today can be a disservice.

MW: If you had the power to control the circumstance of your death, how would you want to die?

Connelly: I would like to die at home with my family. Today, the majority of people die in institutions and horrifically, in ICUs (intensive care units). If they’re dying, they shouldn’t be in the ICU. It’s really abusing the patient. But people cry “Do everything possible” because they don’t want to lose their mother. I don’t want that.

MW: In the book, you urge older adults to develop a ‘death literacy.’ What does that mean?

Connelly: The Lancet published a project on death and dying. The research, conducted by a worldwide commission of experts, suggested that we need to regain our appreciation for the value of death. Death literacy–it’s knowing what to expect in old age. It’s the knowledge and skills that old people need to navigate aging and dying. People don’t like to accept that they can’t physically and mentally do what you did before. Healthcare does a poor job at dying at home and the public is misinformed about hospice. If you get a terminal diagnosis, get an evaluation from a palliative healthcare provider who looks at the whole picture. Hospice–by not treating you–actually results in you living longer and more comfortably than active treatment would. It’s a better option. It’s accepting trade off, accepting that you won’t live forever. Physicians are the lowest users of healthcare at the end of life because they understand–they don’t try to have everything done to them.

MW: How did COVID affect people’s views on death and dying?

Connelly: Clinicians generally aren’t interested in recommending palliative care or hospice. But during COVID, they more often made those referrals because the system was overloaded and palliative care and hospice made sense. During COVID, there was so much death that there was a temporary awareness. But generally there’s a fear of death–everyone wants a legacy, wants to be remembered for something. In the book, I talk about it being more important to understand your life than extend it.

MW: Is there a balancing act that allows you to strive to stay healthy as people live longer while also accepting the reality of a natural death?

Connelly: Try to stay active as possible for as long as possible. And then, education becomes a very powerful tool in this area. There was a study that showed patients videos of the procedures they were requesting. They weren’t understanding what they were really asking for. Once they saw what the procedures entailed, their views on what they wanted changed. Under the healthcare payment system, doctors aren’t paid to patients, help them prepare for what’s the come and educate them. That requires a lot of time and care and multiple conversations. It doesn’t really happen. There’s an obsession with coding in healthcare payment systems and talking and educating isn’t a payment code. That’s why concierge medicine is becoming so popular. Patient gain greater access and doctors have more time.

MW: What do you want to stay with readers after they’ve read your book?

Connelly: Prepare for dying. Make an informed choice. Educate yourself. People have false assumptions of what works. It’s your life and you need to prepare for the end of it. We all do a lot of stuff to prepare for a newborn: we buy all sorts of things, redo the house, read a lot of books and talk to everyone for advice. Dying is a similar experience. We have to prepare for it. The healthcare system isn’t helping you learn about dying. You, as the patient, need to ask for palliative care. If you’re referred to the ICU, or for a transplant, or a feeding tube–ask for a consult with a palliative care doctor first.

MW: What reform do you think we need in healthcare?

Connelly: An economic tsunami is coming at us. There’s a significant shift in the demographics of the U.S. We have will 78 million people on Medicare by 2030. I can’t believe we’re in denial about this economic force. We could stop spending unnecessary money on end of life procedures because it isn’t working. We’re dumping this burden on future generations in the form of debt financing. I spoke about 12 things to change healthcare. There’s the issue of hospice. A doctor needs to certify that you’ll die within six months. No doctor want to say that and tell a patient that. So, doctors don’t bring up hospice until the last seven to 12 days. We also need to expand home care days for hospice. There’s a limit on that and that makes no sense. Congress is too overwhelmed with all that’s facing mankind and getting re-elected to make changes. The insurance world is obsessed with proof. It’s difficult to prove that hospice will cost less. So, we need and want consumers to make these changes. It’s not going to come out of Congress or the healthcare system. We need a cultural change. Do you care about your kids and grandkids? Don’t burden them with the cost and complexities of dying.

This interview was edited for length and style.

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Why was it so hard to bear witness to my father’s final days?

— A former ICU nurse and no stranger to death, I didn’t realize that the most meaningful way to ‘do something’ for my dad was to be present at his bedside, ‘doing’ nothing at all.

Bronze lovers adorn a tomb in Milan’s Monumental Cemetery.

By Sherrie Dulworth

Over the past 20 years, I have been present with four loved ones as they died of terminal illnesses in their homes. Before their deaths, I assisted with comfort care and busied myself helping with household chores. Busyness made me feel useful. Sometimes I talked or listened; other times, there was nothing to do except to sit together in silence, which was a challenge for me.

As a former ICU nurse, I was no stranger to death, but I was a stranger to understanding that some actions are more significant than “doing.” While many of the tasks were important, some even necessary, they were not what mattered most.

Instead, it was the seemingly simple act of being present, of bearing witness in the face of impending death, that was the most meaningful — and the most difficult — thing I did.

More people now choose to die at home in this country than in any other setting. It’s likely, then, that in the future, many of us will be present with someone who is dying. If they are not at home, we might be together in a hospital or nursing home. Yet our society offers little guidance on how we can best emotionally support someone who is dying. There is also scant advice on how best to support ourselves.

Might this be a good time to reflect on what we hope for others and for ourselves in the final phase of life? How do we want to show up? What will we want and need from our loved ones? I interviewed a variety of experts versed in good endings.

BJ Miller, a palliative care physician whose Ted Talk, “What really matters at the end of life,” has been viewed more than 16 million times, told me, “There is poignancy and power in just being present with someone, but our minds get in the way. Our minds tell us to go do things or to run away. I think we need to honor the power of just being, naming what a profound offering it is, and how difficult it is, to sit with suffering that you can’t change.”

This is not stoicism. Nor is it, as Miller said, “an exercise of the intellect. You could force yourself to sit still at the bedside, but will that register with the person in the bed if you aren’t present emotionally?”

For me, being there for others means I must face the vulnerability that impending loss provokes. I must counter my own instincts to freeze or flee. As empathy and vulnerability researcher and bestselling author Brené Brown says in her documentary, “The Call to Courage,” “Vulnerability is having the courage to show up when you can’t control the outcome.”

Like living, dying is sometimes a messy business. I hope to hold space for the dying with empathy and solidarity, showing up without judgment, regardless of what physical or emotional messiness might arise.

This may sound a bit overwhelming, but as the Rev. Paul Tesshin Silverman, a New York-based Zen Buddhist priest, told me, “Have the courage that your heart is big enough to be able to take in a whole rainbow of different feelings and emotions. It will only strengthen you and not destroy you. Allow yourself to be present, breathe, and allow whatever emotions to come out, so that you’re present.”

Silverman described being in Japan as a young monk in his 20s when a girl of about 14 in his village was dying of leukemia. “I went over every day to spend time with her. I felt like I had to get busy for her.” He learned that her dying wish was to go to a boy band concert, and he arranged for her to do that. “I was doing tons of stuff to make her last days happy,” he said. “When I think back on it, the most profound moment, which I wasn’t aware of at the time, was the last day I spent with her, sitting there and just holding her hand.”

Sometimes death comes quickly, but often it tarries, creating an emotional roller coaster for those who are present. When my father was dying from an aggressive brain tumor, he fluctuated between being semi-comatose and responsive for almost a week. In hindsight, I wish that I had allowed myself to stay mindfully present, instead of projecting into the future, engulfed by anticipatory grief.

“Sitting in the liminal space is difficult,” death doula Nicole Heidbreder told me. As a former labor and delivery nurse, Heidbreder has worked on both ends of life’s spectrum. She said, “I try to be present as a fellow mortal, watching others do what I will someday do. If I can be present with compassion, tenderness, and shared humanity, it lets them know they’re not alone.”

According to death doula Elizabeth Johnson, “It takes a kind of reverence to see what is unfolding in that space. It is a mystery to everyone including to the person who is dying. For me, the spiritual component is recognizing that there are equal parts of absolute grace and mystery as we physically unravel from our physical form.”

For his part, Miller said, “I think the sacredness comes from letting go of impulses to control or to fix. You’re not running away from the impulse; instead, you’re running toward some basic sense that life is bigger than you or me. It’s not ours to understand that there are forces at work that include us, but that are much bigger than us.”

One literal definition of the verb “bear” is to support the weight of or to sustain. In bearing witness to another person at the end of life, we support and honor them in their transition. The lesson that I’ve come to realize is that this is, in fact, doing something in the most real and important way possible.

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