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3 Things to Do If You’re Terrified of Your Parent Dying

— If watching them age is causing dark-thought spirals, here’s what a psychologist recommends.

By Cathryne Keller

My deepest fears love to show up right as I’m trying to drift off to sleep—anxious brains are fun like that—and lately, a recurring theme in my after-dark intrusive thoughts is my mom dying. I’ve been straight-up terrified of losing her since I was a little girl (for a bunch of sad, childhood-trauma-related reasons I won’t hit you with here, this topic is dark enough already). But I haven’t been this anxious about it in years, and I know why it’s haunting me again: I’m watching her age.

She’s in her 70s now, and while she’s relatively healthy, active, and sharp (shout-out to my Wordle buddy), there’s no getting around the fact that her body is getting older, and she’s not going to be around forever. In other words, my formerly irrational fear of suddenly losing her isn’t all that far-fetched. And I know—from talking to other friends with older parents, listening to mental health podcasts like it’s my job, and using common sense—that my experience isn’t unique.

Parents are typically the first adults we attach to as babies and who we first rely on for survival, so of course the thought of them dying is going to bring up bone-deep, primal terror for a lot of us. And while an occasional “My parent is going to die!” freak-out might feel manageable, if that fear is regularly causing you to spiral (or, like me, lose sleep), it’s worth finding ways to manage it.

That’s why I asked Beverly Ibeh, PsyD, a therapist at Thrive Psychology Group who specializes in anxiety and grief, for her best advice on what to do if you’re overcome with anxiety and existential dread at the thought of losing your aging parent(s)—both so you (and I) can feel a bit better now and in the future.

Examine your underlying fears—and then fact-check them.

Often, our biggest fears stem from imagining the worst-case scenario instead of the likely one. “Feelings are usually never logical, so make sure to understand where your worries stem from, and then look into how based in reality they are,” Dr. Ibeh says. Yes, your parent(s) will die at some point, as we all will, but your anxiety about that fact likely comes from what you imagine will happen after they pass away, she explains—and fact-checking this fictional future can make it look less bleak.

If I question the root of my mom-death fear, I can see that it’s not just about the fact that I won’t be able to call, hug, or do crossword puzzles with her, but that, without her on the planet—the only person who accepts me fully, 100% of the time—I won’t be okay. The thing is, I don’t know that, because she’s still here. But I do have plenty of evidence to the contrary: I know that people have been losing their parents and surviving the grief since the beginning of time—and that I’ve gotten through other very dark, seemingly hopeless periods.

If you, too, are terrified you won’t be able to cope, take some time to think about (or write down) other losses you’ve survived in the past or personal strengths that make you resilient to prove yourself wrong, Dr. Ibeh recommends. Or maybe your underlying fear is more about losing emotional support. You can challenge that too: Think of other people in your life who you know you can lean on, and remember that you can talk to a therapist for help if you need it, she adds. Again, the idea here is to ask yourself what you’re really scared of, and then “follow the thread of anxiety-fueled what-ifs and answer them with logic and reasoning, using real-life solutions,” Dr. Ibeh says.

Focus on what’s within your control.

Once you get curious about your anxiety, you may also find that you’re worried about specific things you’ll miss about your parent (see: crosswords and hugs above) or logistical stuff, like their end-of-life wishes. That’s why, Dr. Ibeh says, it can also be helpful to ask yourself: “What meaning are you attaching to the loss of your parents as it pertains to how your life will change, and what is within your control now?”

Are you devastated by the idea of never hearing their voice or enjoying your favorite home-cooked meal that only they know how to make? Dr. Ibeh suggests starting to hold onto those special moments in the present, so you can rely on them in the future when you’re grieving. Maybe you can download some of their sweet voicemails or take more videos of them when you’re hanging out, for example, or ask them to teach you how to make their impossibly tender dumplings. There’s no way to replicate hugs, of course, but you can be mindful of savoring them now, so you can seek comfort in those memories when you miss your parent dearly, she says.

As for more practical matters, like what’ll happen to their possessions when they’re gone or their medical care and burial preferences, tackling them head-on is the best way to calm your fear, according to Dr. Ibeh. Ask them if they have a will, for example, or if they have strong feelings about leaving certain belongings to specific family members. If they don’t have an end-of-life plan, you can help them make one—the National Institute on Aging’s free Get Your Affairs In Order Checklist is a great place to start. (They can also consider buying a “Departure File” for $100 from Good to Go, which will help them document everything from what they want on their tombstone to the passwords for their social media accounts.) Having a game plan can ease your uncertainty and, therefore, your anxiety, Dr. Ibeh says.

Connect with them while you can.

“Anxiety takes us away from our present lives and keeps us ruminating about our future to the point that we may miss core memories that will help us keep the spirit of our loved ones alive in our minds and hearts,” Dr. Ibeh says. So when you start dwelling on losing a parent, it can help to think about how you’ll feel when they’re gone: Will you be glad you spent so much time obsessing about their death when they were still here? Or as Dr. Ibeh wisely puts it: “Is there a chance you’re missing out on the life in front of you by focusing on the life you’re afraid you will have in the future?”

If the answer is yes, she recommends “creating new memories with your parent that will outlast their physical presence”—maybe you plan a weekend getaway at a cozy cabin in the mountains if you both love to hike, or schedule a monthly call where you catch up and ask them about things you’ve always wanted to know, like what their college experience was like or how they got through their first big heartbreak. “You can also practice gratitude for the things you love about your parents and the relationship you share,” she adds.

Even if you’re not exactly close with them, focusing on the present is still the best move. If the relationship isn’t so great, you may want to think about how you can improve it (or come to accept it) now, so you’re not left with the weight of unresolved conflict when they’re gone, Dr. Ibeh says. That might mean setting boundaries so you can enjoy your time together while protecting your mental health or talking to them—and/or a therapist, if you don’t get anywhere—about your feelings so you can be more at peace.

I interviewed Dr. Ibeh two months ago and have been implementing some of her advice ever since. No, I can’t say that my mom’s eventual death never haunts me at night, or that my heart rate no longer kicks up when I think about it. But by challenging my fears with facts, trying my best to savor the best parts of our relationship (and accept the hard ones), and working on my anxiety in therapy (let’s be real), I now feel an underlying sense of peace that wasn’t there before. When that awful day comes, I probably won’t be okay initially, but I will eventually, because the things I’m most scared of losing (my memories, our connection, my sense of her) can never leave me.

Complete Article ↪HERE↩!

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Many Patients Don’t Survive End-Stage Poverty

By Lindsay Ryan

He has an easy smile, blue eyes and a life-threatening bone infection in one arm. Grateful for treatment, he jokes with the medical intern each morning. A friend, a fellow doctor, is supervising the man’s care. We both work as internists at a public hospital in the medical safety net, a loose term for institutions that disproportionately serve patients on Medicaid or without insurance. You could describe the safety net in another way, too, as a place that holds up a mirror to our nation.

What is reflected can be difficult to face. It’s this: After learning that antibiotics aren’t eradicating his infection and amputation is the only chance for cure, the man withdraws, says barely a word to the intern. When she asks what he’s thinking, his reply is so tentative that she has to prompt him to repeat himself. Now with a clear voice, he tells her that if his arm must be amputated, he doesn’t want to live. She doesn’t understand what it’s like to survive on the streets, he continues. With a disability, he’ll be a target — robbed, assaulted. He’d rather die, unless, he says later, someone can find him a permanent apartment. In that case, he’ll proceed with the amputation.

The psychiatrists evaluate him. He’s not suicidal. His reasoning is logical. The social workers search for rooms, but in San Francisco far more people need long-term rehousing than the available units can accommodate. That the medical care the patient is receiving exceeds the cost of a year’s rent makes no practical difference. Eventually, the palliative care doctors see him. He transitions to hospice and dies.

A death certificate would say he died of sepsis from a bone infection, but my friend and I have a term for the illness that killed him: end-stage poverty. We needed to coin a phrase because so many of our patients die of the same thing.

Safety-net hospitals and clinics care for a population heavily skewed toward the poor, recent immigrants and people of color. The budgets of these places are forever tight. And anyone who works in them could tell you that illness in our patients isn’t just a biological phenomenon. It’s the manifestation of social inequality in people’s bodies.

Neglecting this fact can make otherwise meticulous care fail. That’s why, on one busy night, a medical student on my team is scouring websites and LinkedIn. She’s not shirking her duties. In fact, she’s one of the best students I’ve ever taught.

This week she’s caring for a retired low-wage worker with strokes and likely early dementia who was found sleeping in the street. He abandoned his rent-controlled apartment when electrolyte and kidney problems triggered a period of severe confusion that has since been resolved. Now, with little savings, he has nowhere to go. A respite center can receive patients like him when it has vacancies. The alternative is a shelter bed. He’s nearly 90 years old.

Medical textbooks usually don’t discuss fixing your patient’s housing. They seldom include making sure your patient has enough food and some way to get to a clinic. But textbooks miss what my med students don’t: that people die for lack of these basics.

People struggle to keep wounds clean. Their medications get stolen. They sicken from poor diet, undervaccination and repeated psychological trauma. Forced to focus on short-term survival and often lacking cellphones, they miss appointments for everything from Pap smears to chemotherapy. They fall ill in myriad ways — and fall through the cracks in just as many.

Early in his hospitalization, our retired patient mentions a daughter, from whom he’s been estranged for years. He doesn’t know any contact details, just her name. It’s a long shot, but we wonder if she can take him in.

The med student has one mission: find her.

I love reading about medical advances. I’m blown away that with a brain implant, a person who’s paralyzed can move a robotic arm and that surgeons recently transplanted a genetically modified pig kidney into a man on dialysis. This is the best of American innovation and cause for celebration. But breakthroughs like these won’t fix the fact that despite spending the highest percentage of its G.D.P. on health care among O.E.C.D. nations, the United States has a life expectancy years lower than comparable nations—the U.K. and Canada— and a rate of preventable death far higher.

The solution to that problem is messy, incremental, protean and inglorious. It requires massive investment in housing, addiction treatment, free and low-barrier health care and social services. It calls for just as much innovation in the social realm as in the biomedical, for acknowledgment that inequities — based on race, class, primary language and other categories — mediate how disease becomes embodied. If health care is interpreted in the truest sense of caring for people’s health, it must be a practice that extends well beyond the boundaries of hospitals and clinics.

Meanwhile, on the ground, we make do. Though the social workers are excellent and try valiantly, there are too few of them, both in my hospital and throughout a country that devalues and underfunds their profession. And so the medical student spends hours helping the family of a newly arrived Filipino immigrant navigate the health insurance system. Without her efforts, he wouldn’t get treatment for acute hepatitis C. Another patient, who is in her 20s, can’t afford rent after losing her job because of repeated hospitalizations for pancreatitis — but she can’t get the pancreatic operation she needs without a home in which to recuperate. I phone an eviction defense lawyer friend; the young woman eventually gets surgery.

Sorting out housing and insurance isn’t the best use of my skill set or that of the medical students and residents, but our efforts can be rewarding. The internet turned up the work email of the daughter of the retired man. Her house was a little cramped with his grandchildren, she said, but she would make room. The medical student came in beaming.

In these cases we succeeded; in many others we don’t. Safety-net hospitals can feel like the rapids foreshadowing a waterfall, the final common destination to which people facing inequities are swept by forces beyond their control. We try our hardest to fish them out, but sometimes we can’t do much more than toss them a life jacket or maybe a barrel and hope for the best.

I used to teach residents about the principles of internal medicine — sodium disturbances, delirium management, antibiotics. I still do, but these days I also teach about other topics — tapping community resources, thinking creatively about barriers and troubleshooting how our patients can continue to get better after leaving the supports of the hospital.

When we debrief, residents tell me how much they struggle with the moral dissonance of working in a system in which the best medicine they can provide often falls short. They’re right about how much it hurts, so I don’t know exactly what to say to them. Perhaps I never will.

Complete Article ↪HERE↩!

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After I Lost My Son, I Realized I Needed to Stop Looking for Closure

By Liz Jensen

Four years ago, I got the news that every parent dreads.

Without warning, my healthy 25-year-old son, Raphaël — a wildlife biologist and an environmental activist — had collapsed and died, probably from a rare heart disorder nobody knew he had. The trauma catapulted me into a place of almost hallucinatory madness: a territory so tormenting, debilitating and bleak that I couldn’t imagine how I’d survive it, let alone find joy in the life that remained.

Catastrophes are radicalizing and transformative. You no longer see your life in the same way afterward. But must grief diminish you, or can it do the opposite?

The question was vital because my devastation as a newly bereaved mother felt mirrored by the pain and anxiety of millions of people struggling to process the consequences of global heating and the obliteration of precious ecosystems.

Both forms of grief were rooted in love. Both required courage, resilience and compassion. And the emotional arc of both, I came to believe, could create the strength and purpose needed to navigate an increasingly unstable future.

In the field of death and dying, one of the most enduring and influential figures is the Swiss American psychiatrist Elisabeth Kübler-Ross, who in the 1960s came up with the five stages of death: denial, anger, bargaining, depression and acceptance. She’d been studying the emotional arcs of terminally ill patients, but later she and her colleague David Kessler repurposed the stages to apply to the grief of the bereaved, and the five-stage model became deeply embedded in Western culture.

In a 2007 paper, the Nobel Prize-winning climate scientist Steven Running applied those stages to the climate crisis, characterizing denial as the belief that the climate emergency isn’t happening or that humans aren’t the root cause. The anger stage kicks in when you realize your worldview or lifestyle will have to change substantially. Then you bargain by downplaying the scale of the crisis or by putting all your faith in technological fixes. The depression stage manifests when you feel overwhelmed by the extent of the crisis and realize that governments and corporations are not only spinning their wheels but also often actively exacerbating the damage. Acceptance entails recognizing that the scale of the challenge is irrefutable and then looking for solutions, because “doing nothing given our present knowledge is unconscionable,” Mr. Running wrote.

After tragedy struck Mr. Kessler, he altered his own analysis of bereavement. As an author and public speaker who had spent his career supporting the bereaved, he felt he knew grief well. But the unexpected death of his 21-year-old son changed everything. Suddenly, like countless other bereaved parents, he faced the existential question raised in the adage that the two most important days in your life are the day you are born and the day you find out why. And he came to believe that acceptance isn’t the end of the grieving process; it’s only the beginning of a new, sixth stage of grief, defined not by finding closure but by finding meaning.

This stage made a lot more sense to me than any of the others did. There was no meaning in Raphaël’s death. But I could find purpose, meaning and fulfillment in what I did and made happen in its wake.

The year before Raphaël died, I co-founded the literary activist group Writers Rebel to put literature in the service of life on Earth. But after we lost him, I stepped back: I couldn’t face the video calls. Then, in those early months of grieving, I began to meet other bereaved parents, take daily swims in the freezing Danish winter sea, reconnect with the natural world and read books about consciousness that led me to abandon my rational, secular view of it. And one day, I remembered what Raphaël said when I belittled my ability to effect change: “Do what you can, where you are, with what you’ve got.”

What, I began to wonder, could be more meaningful than honoring my son’s memory and the world I love by being active rather than crying on the couch?

Seven months after Raphaël’s death, I stood in the freezing Copenhagen wind with a group of writers and made a speech about why literature must address the climate crisis with the urgency it deserves. I was raw and nervous, but I sensed his presence. When I quoted him — “I won’t stand aside and watch the world burn” — a huge cheer went up, and I felt an inner shift.

Yes, my son was dead. And yes, the planet’s life support systems were weakening. But it wasn’t too late for the planet.

I rejoined my weekly Zooms and helped organize a tribute to Earth’s most critically endangered species. Later, the notes I’d been writing to myself as therapy began morphing into a memoir. And yes, it all felt meaningful.

Mine was just one of many paths from grief to fulfillment. For those feeling paralyzed by climate grief, just doing something new or doing something familiar more mindfully can germinate what the eco-philosopher Joanna Macy calls active hope: not the amorphous hope of wishing on a star but the practical hope of rolling up your sleeves and getting to it. Intentions are fine, but the meaning lies in the doing — be it cheering up a friend, energizing voters, transforming a patch of urban scrub into a garden, joining a citizens’ movement, switching to a plant-based diet, ditching a bad habit or taking time to observe a creature in the wild.

Just a few months before the electrical signals in Raphaël’s heart were catastrophically disrupted, I found a passage in his notebook that showed he had a premonition that he would die young but that his sense of purpose would stay vividly alive.

“I’ll not be dead until my dream is, I’ll not fade away until my vision does, I’ll not be gone until all my hopes are,” he wrote.

It took his death for me to understand why I was born. It can’t take a civilizational collapse for humanity to understand why we belong here.

Complete Article ↪HERE↩!

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How (Not) To Grieve

— I was taught not to cry at death. And it fucked me up.

Mitchell S. Jackson in Los Angeles, March 9, 2024

By

The homie Kev was kind, smiled easy, and spoke so soft sometimes I had to lean in to hear him. The homie Kev was cock-diesel and fearless on the football field. The homie Kev took the rap for me without a blink when my grandmother caught me packaging bunk weed in my bedroom.

The fall after we graduated, my homie Kevan Hai Miller was found shot to death on an apartment doorstep. What I remember is feeling my response should be governed by my manhood, that I’d be weak if I wept, whether someone saw my eyes leak or not. I’d had practice in not grieving. Going into my senior year, our fireplug point guard had beef with my cousin—not my blood, but our mothers were super close—and shot him. My cousin, amen, lived. And yet we might’ve been more worried about losing our PG for the season than the gravity of such serious violence. We were teenage boys, most of us Black, considering extreme harms, but almost no one was dramatic about it. While grieving forreal forreal would’ve been seen as Hamletian histrionics, fear lay beneath our forged stoicism: Which side of the fray were we on? Were we, too, in peril? Did the circumstances demand our swift vengeance?

To grieve or not to grieve? Often the answer was a mandate: Shake that shit off pronto. We did, however, commemorate the dead homies with ample reminiscing, often while getting faded on weed or liquor. Pouring some of that liquor on a curb. Wearing T-shirts screen-printed with a picture of the deceased. A barbecue or picnic in their honor. A curbside memorial. And for the most brazen: murderous-minded get-back.

None of our rituals amounted to the five stages of grief expressed by Elisabeth Kübler-Ross in On Death and Dying: denial, anger, bargaining, depression, and acceptance.

Denial has always felt like a weakness. Why the hell am I denying what happened, the absolute fact of someone’s death? People get killed. People die from cancer or a seizure or a heart attack or Covid, and while it hurts to lose them, it seems irrational if not insane to protest the reality. The same goes for bargaining, which I’ve also been determined to skip. Why bargain against what can’t be undone? Who am I bargaining with, the deity that allowed it? The same goes for depression, for my refusal to allow that a significant loss could leave me down, down, that my despair is natural and maybe even healthy. My grieving has meant speeding to acceptance, even if I know in my deepest and truest place that acceptance is false. My mourning has been bound by what I’ve been nurtured to believe about the intersections of manhood and blackness—by Black manhood—and those beliefs have made it all but impossible to progress through healthy grieving.

A Black man is ever strong. A Black man don’t cry—he damn sure don’t do no public boohooing. A Black man don’t broadcast his feelings. A Black man don’t cower from anything or anyone. A Black man handles it, whatever it may be.

On the flipside of that armored, unflappable, immutable Black manhood is, God forbid, the jacket of a lame or a sucker or a punk or a pussy or a bitch or soft or weak; is, God forbid, the disgrace of being deemed a man who let his emotions get the best of him, or in other words, a man who let his emotions escape outside of him.

A Black man don’t cry—he damn sure don’t do no public boohooing. A Black man don’t broadcast his feelings.

Much of our rubric is cultural. But somebody please show me a part of culture that isn’t also historical.

If epigenetics is real, mightn’t Black grief be shaped by the forbearers of Black Americans having survived the torture of a speculum orum or a dead fellow African coffled to them or a beloved tossed into the Atlantic without a care. Their kin snatched from their outstretched arms and sold to an eternal elsewhere. Their flesh and blood strung from a sturdy branch and beaten or flayed or castrated or set aflame? Their intimates lost to post–Civil War privation or prison cells? Yeah, slavery was ages ago, but if epigenetics is true, how might those traumas have shaped the descendants of the once enslaved?

Not to mention what to make of the collective grief of Black people who witnessed Mike Brown left baking in the street. Eric Garner choked unconscious. George Floyd kneeled into the next life. Tell me, what might those almost inescapable Black traumas do to the genes of Black folks writ large? How might they shape Black men who feel beholden to rigid strictures of manhood?

A case study of three recent personal losses.

November 6, 2022—Fresh off a transatlantic flight, I received a rare call from my sister. “Mitch, Dad passed,” she said. “Dad is gone. Dad is gone.” When I hung up, I watched dreary London lapse past my window and sobbed in silence. That commute wasn’t the only time I wept over my 67-year-old biological father (Wesley Johnson Sr.) dying in his sleep from a seizure, but it was the only time I allowed myself tears without a measure of self-chiding.

July 17, 2023—My beloved Aunt Bonnie had a heart attack and died in her sleep. Just that May, my aunt texted about a dream in which, while she was struggling to write, someone asked her if she knew me. Aunt Bonnie told the person in her dream that she did, and they advised her to have me touch her pen. Aunt Bonnie asked me to bring her pens, “speak a few words over them,” and leave them in her mailbox. The next day, I delivered her a pack of pens and a Moleskine notepad, inscribed, “I pray you take your ambitions all the way!” Aunt Bonnie assured me, “I’m really going to write that memoir this time, nephew.” Months after she died, I returned home from a trip and discovered my cousin had sent me a package with the Moleskine. On its first page, Aunt Bonnie (Bonnie Johnson) had written an account of her dream and of me dropping off the notebook. She ended it, “I will write. I will write. I will write. Nephew, thank you for showing up for the assignment.” Because I was alone, I let myself weep without reserve, the last I lamented her passing without wondering if it had lasted too long.

January 15, 2024—My grandfather passed from complications of pneumonia and Covid. Granddad (I called him Dad) was part of the men I considered my composite pops. He reached 89 years old, and yet his death seemed sudden. This past Christmas I brought Dad chicken and rice and we watched sports. Sure, he moved a little slow from living room to kitchen. Sure, he repeated a couple of questions and responses, but nothing I witnessed suggested he’d be dead in less than a month. And yet, less than a month later, family gathered at his bedside and, while Dad lay brain-dead on a ventilator, said their goodbyes. That same night, I awoke around 2:00 a.m. and, as I’d never done, began cleaning my house. Around 4:00 a.m. I said a teary-eyed prayer for my grandfather (Sam Jackson Jr.), thanked him for being a father to me, wished him heaven-bound, and mourned unbidden for the fact of its privacy.

What’s more doleful, mourning the dead or the living?

My grandfather left his youngest son as an executor of his estate and beneficiary of his retirement account. This is the same uncle who coached me into a track-and-field city champion, who spent umpteen hours helping me work on my hoop skills, who let me stay with him for a few months when my mother was deep in the throes of her addiction. Nonetheless, in the weeks after my granddad passed, the family discovered that my uncle (let’s call him A. J.) withdrew the funds from my granddad’s retirement account and kept most of the money to himself. Kept it regardless to his being but one of my grandfather’s four surviving children. Kept it despite two of his siblings being poor and disabled.

I don’t have to give anyone anything, he told us. A breach that has plunged me into what might be my profoundest grief. Because it’s a loss not grounded in the irrevocable. Because, given the natural order, I’ve lost my uncle once and will lose him again. Because how do I forgive the seeming unforgivable?

So here I am groping for what, in On Grief and Grieving, Kübler-Ross and David Kessler describe as the sixth stage—(finding) meaning—and meanwhile experiencing the stages I’ve beat back my whole life. The denial. The bargaining. The depression. Unc, not you. How could you? Don’t do this, Unc, please. It ain’t worth it. What do you need, Unc? Aren’t there other means? Unc, what about Dad’s desires? Unc, I don’t want to lose you, but what choice will this leave me? What if, Unc? What if? What if? Uncle, don’t you love us? In any case, I’m okay? I’ll be okay? I’m strong?

Complete Article ↪HERE↩!

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3 ways advance care planning empowers people

By Lauren Gruber

As we age, health care and quality of life become more important. Making an advance care plan enables patients to consider their health care options, provides directions for caregivers and gives patients as much control as possible during end-of-life.

National Healthcare Decisions Day on April 16th, which seeks to inspire, educate and empower the public and providers on the importance of health planning, is a prime opportunity to consider enrolling in an advance care plan.

Identifying the right caregiving plans may seem daunting at first, but it’s important that patients solidify an advance care plan for the security and peace of mind of themselves and their loved ones.

Here are three ways why choosing an advance care plan through the VNA can empower patients to ensure the best care possible during their health care journey:

1. Build a system of support for all patient health needs.

Advance care planning is essential for anyone, but especially for those experiencing a difficult diagnosis and for those who find it difficult to talk about their end-of-life needs. However, advance care planning may often feel confusing to many people who are unsure where to start.

Luckily, the VNA provides the education and support needed to understand everything they need to know throughout the entire planning process. A nurse practitioner and licensed clinical social worker meet with patients at their homes to evaluate their health needs and assist in educating patients and loved ones on available services and options that may be available to them. Patients can rest assured that the VNA’s Advance Care Planning team provides a planning experience that is as seamless and easy to understand.

2. Maintain freedom when choosing a personalized advance care plan.

When it comes to planning for the final stages of life, it’s important that patients have control and feel confident their wishes will be honored. Advance care planning offers freedom of choice and active participation in optimizing a patient’s care routine. Health planning is also essential for any patient dealing with a disease or injury to understand the full scope of their healthcare goals and make proactive decisions ahead of hospice or end-of-life care. The VNA also offers an Individualized Advance Care Plan, which is free to download online and helps patients personalize their care plan or initiate conversations with physicians and family members.

3. Secure the future for patients and loved ones.

Advance care planning allows patients to plan proactively and feel more secure in their health care options. The Advance Care Planning team discusses care goals with patients and ensures that everyone understands every available option during end-of-life or hospice care. In addition to identifying their goals, the team helps plan advance directives for patients, which outline the type of care a patient expects to receive if they are unable to speak. 

Additionally, the VNA’s Five Wishes® platform, a user-friendly legal document template written in everyday language, helps patients officially plan, document and communicate how they hope to be cared for in the event of serious or terminal illness. This critical step allows family and caregivers to understand exactly what the patient wants. It also helps patients feel secure in expressing their desires for medical and legal matters, along with personal and spiritual concerns. The platform also ensures patients meet legal requirements for an advance directive in 42 states.

Empowering patients should always be a priority during advance care planning. Understanding the process and how it can help patients and caregivers make the best decisions in the last stages of a patient’s life can help them transition with dignity in a comfortable and supportive environment that benefits everyone.

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What we owe trans youth when we grieve them

— How do we mourn people we’ve never met, yet feel inextricably connected to? How do we honour the dead without appropriating their stories?

By Kai Cheng Thom

It wasn’t supposed to be like this. It’s an absurd thought that feels almost shamefully naive, but it keeps returning to me as I search for the words to open this piece. It was not supposed to be like this. We are not, in 2024, supposed to be living in a world where young people are losing their lives to transphobia and bigotry. The first time I wrote an essay for a newspaper about a murdered trans youth was over ten years ago, when I was a youth myself, and I suppose a part of me never thought that I’d still be doing it a decade later.

Yet here we are: Still trying to pick up the pieces, to speak about unspeakable losses in a way that feels meaningful. Still trying to answer questions that feel unanswerable: How do we mourn people that we’ve never met, yet feel inextricably connected to? How do we honour the dead without appropriating their stories? All the while, around us, the roar of anti-trans moral panic grows louder and louder, pervading social media and political discourse, building to a fever pitch.

Trans communities have been flooded with deeply disturbing news about violence toward youth and children over the past several weeks. On March 17, a 21-year-old trans man named Alex Franco was shot to death in Utah. A few days earlier, on March 21, the district attorney of Tulsa County had announced that no charges would be filed regarding the death of Indigenous non-binary teenager Nex Benedict, who reportedly died of suicide following a physical altercation during which they were allegedly attacked by three fellow students in a bathroom in their public high school.

In moments like this, I feel the impulse to lean into familiar stories, the instinctive urge to fall back on a world view predicated upon victims, villains, the longing for retribution. This is the only language that this culture has given me to make meaning from the unspeakable. Perfect victims, unforgivable villains, justice in the form of stronger laws and prison sentences. Is this what I am to believe in? Like many trans people, I came so close to being one of the youth who died too young. It’s so personal and so painful. I understand the move toward oversimplification—yet I cannot believe it serves the dream of a more just world for children to live in.

Back in February, the news of Benedict’s death sent shock waves of grief and outrage through queer and trans social networks, following closely on the heels of a trial in the United Kingdom of the murderers of a 16-year-old trans girl named Brianna Ghey. The trial revealed that Ghey’s killers had been shockingly brutal, stabbing her 28 times with a hunting knife after luring her to a meeting in a park. Each one of these horrifying events is in itself a terrible loss, a complex and painful story that deserves its own remembrance. Taken together, they have become inextricable from the larger narrative in which as trans people find ourselves presently entangled: a social panic that exploits us as scapegoats and political pawns—and that ultimately results in real violence against us. Trans people, and especially trans children and youth, have become a wedge issue exploited by populists and profiteers who know that the best way to whip up support from their followers is to give them an enemy to unite against.

Canadian Conservative leader Pierre Poilievre demonstrated this time-honoured strategy when he declared last month that “biological males” (that is, trans women) should be banned from public facilities such as change rooms and washrooms designated for women. So did Oklahoma education superintendent Ryan Walters when he appointed notoriously anti-trans TikTok influencer Chaya Raichik to serve on a media advisory committee for the state school library system—a move that many queer and trans journalists and media commentators have cited in reporting on Nex Benedict’s death, given that Benedict lived in Oklahoma.

Politicians like Poilievre and Walters are undoubtedly aware of what they stand to gain from taking such public stances against trans rights: support from a growing and extremely vocal “gender critical” movement that has taken hold in many conservative and centrist circles. For people like them, the war over trans rights might be strategic or ideological, a series of battles in a larger culture war.

Yet for the families of trans and gender-diverse children, and for trans people themselves, the impact is immense and personal beyond measure. Bombarded with stories of violence, death and loss, surrounded by an inescapable and seemingly incessant debate about trans human rights, we are a population engulfed in collective trauma.

Trans people have been culturally associated with violence, early death and false accusations of sexual perversion since long before Nex Benedict, Alex Franco and Brianna Ghey were born. While it goes without saying that each of these youth was a unique individual with a unique life story, it is impossible for many—perhaps most—trans people today to engage with those stories without immediately connecting them to a litany of other, similar stories of friends and loved ones and community members ripped from us before their time. To remember them is to feel each of their names like a punch in the gut.

It seems that to live as a trans person in 2024, nearly a decade after the so-called “Trans Tipping Point,” still means carrying the weight of a collective trauma that mainstream society does not understand and refuses to perceive. If there is a cultural stereotype that trans communities are overly prone to radical activism and political confrontation, perhaps this is why: We are drowning in the narratives of dead friends and dead children, and it is psychologically and spiritually unbearable. How could we not demand justice?

“It is frighteningly easy to make martyrs out of the dead, to turn them into political symbols when in fact they are people.”

In the wake of tragedy, it only makes sense to respond by calling for a world in which such things never happen again. Yet there is always something about this impulse that is confusing and complicated, that makes the writer in me falter where my activist self wants to rush forward.

It is frighteningly easy to make martyrs out of the dead, to turn them into political symbols when in fact they are people. This is especially true of children who have died under violent circumstances. Conservatives and transphobes do this all the time, weaponizing the notion of childhood to forward adult agendas—this is in fact a key element of transphobic and homophobic political campaigns where, for example, sex education or queer literature are banned in the name of “protecting kids.”

Queer and trans advocates and writers can do better, by refusing to give in to the temptation to make martyrs of our dead youth—by resisting the temptation to erase the complexities of their lives and deaths in order to serve our political ends. It would be easy for queer and trans advocates to project our own life stories on to young people like Benedict, Franco and Ghey, and understandably so. However, it is essential that we also remember them as individuals with interior lives that most of us can only guess at. They aren’t poster children in the struggle for trans rights. They were and are so much more than that.

Public grieving and public mean-making call for a commitment to complexity, a commitment to honouring the full humanity of those we grieve—even when their stories do not align perfectly with our preferred narratives. For example, there has been much pushback in some parts of the queer community over whether Nex Benedict died by suicide or as a result of injuries sustained in the attack he suffered, which were fuelled by ambiguities in the autopsy report—several head injuries were listed in the document, but according to the report, Benedict’s cause of death was a lethal combination of antidepressants and antihistamines. The truth is important. Yet I must ask: Would it not be equally tragic, equally deserving of a call to justice, either way? Would we mourn a death by suicide any less? Surely not.

Some might argue that Benedict was bullied to suicide, which certainly seems like a distinct and terrible possibility that must be considered. A commitment to complexity means that we cannot be sure of the answer, and I believe that staying in the question is a part of honouring his humanity, because Benedict is worth grieving without having to know for certain why he died. The loss of his life, and everything he could have been, is unbearable regardless.

It is also important to observe how in the surge of justified anger over transphobic violence directed toward children, progressive movements can be inclined to call for accountability and protective measures that are not aligned with progressive principles—and that may actually result in greater harm to trans children and youth overall. In the wake of the sentencing of Brianna Ghey’s killers, for example, the U.K. media has largely chosen to focus on covering her mother’s campaign for greater restrictions on and monitoring of youth social media and cellphone use. As Eli Cugini and Ilya Maude reported for Xtra, such initiatives could potentially be devastating for trans young people living in abusive families.

An even more emotionally fraught, yet extremely important, question is how we are to understand calls for perpetrators of violence against trans youth—who are often youth themselves—to face criminal charges and prison time? Is this the meaning of justice? I cannot believe that this is the case. Writer and Xtra columnist Jude Ellison S. Doyle seems to agree, writing recently in his newsletter: “[J]ustice doesn’t mean blood, and it doesn’t mean vengeance. It means making sure that Nex Benedict’s life matters.”

What does it mean to make the lost life of a child matter? In the first place, it bears saying that it always matters. In the second, it means reflecting deeply on the structural factors that allow such unthinkable things to happen so frequently in the first place—factors like the lack of universal mental healthcare and under-resourced public schools, like a political system built around cronyism and cheap culture war pandering rather than meaningful public participation and the collective good.

A queer view of the world invites us to reach beyond the punitive impulse, to ask ourselves if the call for revenge really serves our intention of breaking the cycle of harm. Does putting people in jail, expanding the power of the criminal court, protect young people from violence? I do not think so, because violence is not an individual problem. It is a systemic one that requires systemic solutions.

We are not supposed to be living in this world. Brianna Ghey and Alex Franco and Nex Benedict were never supposed to die in it. They deserved a better world—and so did all the queer and trans youth who came before them, all the queer and trans youth still alive today, and all those coming next. Let us honour them by building a better one.

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As doctors, we are failing to put patients’ needs first, causing harm at the end of life

— Doctors including Zachary Tait and Rupal Shah, and recently bereaved readers Jo Fisher and Rebecca Howling, respond to Adrian Chiles’s column on how his father spent two of the last days of his life alone and distressed in A&E, for no good reason

‘As a junior doctor working in A&E, I loathed watching frail, mostly older people languish on trolleys in corridors.’

My condolences to Adrian Chiles on the death of his father. His column describing the futility of his father’s last “precautionary” trip to A&E (3 April) highlights a rising challenge of the ageing population. As health and social care services collapse, the harms and indignities of hospital admission increase, especially for those least able to advocate for themselves. As a junior doctor working in A&E, I loathed watching frail, mostly older people languish on trolleys in corridors, receiving substandard treatment that they didn’t want and were unlikely to benefit from. This is now the norm in every hospital I’ve been to.

A 2014 study showed that more than a quarter of hospital inpatients die within a year. The risk, perhaps unsurprisingly, increases with age. It is our responsibility as clinicians to have difficult and frank conversations with patients ahead of time; to be pragmatic, realistic and kind in our decision-making. Unfortunately, lots of this comes under “planning for the future”, which tends to slip down the to-do list during a crisis. It is the single most rewarding part of my work to have the time and opportunity to make care plans with patients, to know what matters most to them, and to stop the “shrugs” that Chiles faced at every turn. But medicine-by-protocol is quicker and cheaper than thought and pragmatism, so as resources are stretched ever further, it may continue to flourish. I am so sad for Peter Chiles’s distress, and so grateful that his son uses his voice to call attention to it.
Zachary Tait
Manchester

I have been a GP partner in Battersea, London, for 20 years. Unfortunately, Adrian Chiles’s opinion piece absolutely resonates. As clinicians, we are now taught to prioritise “safety” over all other considerations – despite the dangers inherent in doing so. Really, we are often protecting ourselves more than we are protecting our patients – an inadvertent side-effect of our unforgiving regulatory system.

We doctors are behaving as “artificial persons” who represent the healthcare system, and not as moral agents who have a duty to create meaning with our patients. We urgently need to move into a moral era of medicine – one that rejects both the protectionism of the past and the reductionism of the current context, which so often results in the cruelties and inefficiencies that Chiles describes.
Rupal Shah
Co-author, Fighting for the Soul of General Practice – The Algorithm Will See You Now

Adrian Chiles’s article stirred my thinking, as I have been on a similar journey. My husband died two weeks ago, having been advised that he had three months to live. This proved to be the case. With the Hospice at Home service, the NHS was truly wonderful. He died, however, with morphine slowly killing him. This could have been prevented if an assisted dying law was in place. One of the nurses said that what we were doing was cruel.

We were able to resist a possible hospital admission for chest pains by having what is called a ReSPECT document signed by our GP for “do not resuscitate”, and because we had an advance directive, dated 2022, that had been placed with the GP and was on his medical records. This made the whole process so much easier for us, but also for the various wonderful medics. Parliament needs to update our laws to align with so many in this country who wish for greater clarity and support Dignity in Dying.
Jo Fisher
Brampton, Cambridgeshire

In response to Adrian Chiles’s article, and having recently lost my own father, the best advice I can offer anyone is to make sure you have power of attorney in place for your parents. That is the way you can ensure that you have the power to override the decisions of medical staff who, while acting with the best intentions, will not know your parents as well as you do and may not make the decision that is best for them, or what they would have wanted. Having a power of attorney in place is more important than a will, in my view, because it enables you to help your living parent and ensure that their wishes are complied with. In my father’s final days, I was asked numerous times: “Do you have power of attorney?” I was very relieved to be able to answer: “Yes.”
Rebecca Howling
Toft, Cambridgeshire

As the daughter of an elderly parent, I very much understand the need for A&E avoidance, to cause least distress. No doubt waiting haplessly alone for many hours hastens demise. However, as a GP, I know that the huge increase in litigation over the last 20 years is a very real threat to doctors’ livelihoods. Even a simple complaint from a patient or their family can cause weeks, months, sometimes years, of stress to a health professional. Ruminating over every decision, every action or inaction, every justification, is enough to give us a heart attack – or worse, to make us follow in the footsteps of Paul Sinha and Adam Kay and quit the profession for a more peaceful existence.
Name and address supplied

Dear Adrian, I am so sorry that this happened to your dad. Sadly, it is a story repeated again and again. I am what is termed a “late career” doctor (over 55), and I recently transitioned from working as an emergency consultant to become a GP working in aged care. Over my 30-year career, mainly in emergency and other hospital specialities, although including a significant period in palliative care, I slowly came to appreciate that the way we have set up our emergency system doesn’t serve older people at all, and the frailest elderly are generally so poorly served that transferring them almost inevitably makes things worse.

My residents (200 across five aged care facilities) all have discussion and documentation of whether they should go to hospital and under what circumstances. The staff know to call me if there is any uncertainty, day or night. I do lots of family meetings so relatives can feel confident that the right decisions will be made. I love looking after old people and ensuring they get the best care that is right for their individual circumstances.

I firmly believe that aged care in particular is a GP subspecialty of its own. Too often care is fitted into lunch breaks and “on the way home” visits, and devolved to phone services out of hours. This is no way to treat our oldest and frailest, who deserve so much better. Again, I am so sorry.
Fiona Wallace
Sheffield, Tasmania, Australia

I read Adrian Chiles’s article about his father’s experience with empathy. My own father led a district health authority, with many hospitals under his care. He was intensely proud of the NHS, but in his 90s he was very clear that he didn’t wish to die in hospital or even to be admitted again unless absolutely essential. If he had an infection, he would be treated at home. Should it worsen and Dad die, it would be in his own bed. As a family, we listened. I was caring for him and know it took a huge weight off Dad’s mind to know that he need not dread the ambulance or the bewilderment of a strange place. Too many elderly people die in the back of ambulances and in A&E. Let those who are able to do so make informed choices about their end of life. It is a great comfort to them.
Dr Jane Lovell
Ashford, Kent

Adrian Chiles is correct that decisions about sending frail and elderly patients to hospital can be due to doctors being risk-averse. Doctors face a double jeopardy from the General Medical Council, who can take their livelihood, and the legal system if things go wrong.

Not all families can accept when beloved elderly relatives have reached the end of their life. Some people have unrealistic expectations about what healthcare can achieve in frail patients, and push for investigations and treatments even when it seems unlikely to affect the final outcome. If these are not performed, doctors can be accused of negligence or ageism. Most doctors would like less invasive healthcare at the end of life for themselves and their own families than they routinely offer to patients.

I would encourage everyone to write an advance directive or “living will” outlining how they would like to be treated in the event of their health deteriorating. I would also suggest giving a trusted person power of attorney for healthcare. These can be very helpful in reducing incidents like the one described in the article.
Dr Stephen Docherty
Consultant radiologist, Dundee

I would like to express my condolences to Adrian Chiles on the death of his father. I can empathise with him on many levels. I too lost my father recently in not dissimilar circumstances. I am a practising GP, a former medical director of an out-of-hours GP service, and now spend most of time as a management consultant trying to influence change in the NHS to stop incidents like this happening.

When I talk to clinicians and managers, I am always humbled by their devotion despite the pressures they work under. In my current assignment, over 32% of clinicians feel they are burnt out, and many more express intense frustration with the low-value clinical work they undertake. There is a limit to how much the system and the individuals who prop it up can give. The demand for care is rising every year.

I suspect that the GP who decided to send Adrian’s father to A&E without seeing him was under pressure to make a number of decisions that night. Given more choice, I’m sure they would have prioritised cases such as Adrian’s father over lower-priority, often unnecessary cases. What we do not discuss as a society with as much fervour as the system and those who provide care is how we consume care, so we can create time and space to support those who really need necessary attention.
Dr Riaz Jetha
London

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