Category: Talking about death

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Understanding Hospice

— The emotional difficulties of hospice care have made it underutilized and, to some, taboo — medical professionals are trying to change that

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Carla Thompson has worked in hospice care for more than two decades, and she knows first-hand just how difficult it can be to make end-of-life decisions.

“You can’t always see the future,” says Thompson, a registered nurse and administrative director for Bon Secours Home Health & Hospice. “When you’re given a diagnosis, you have all these treatment options in front of you. You have to make decisions to keep trying to cure the disease or choose to live with it, focusing on comfort and spending time with family.”

Thompson’s daughter Jessica died last year in hospice services at the age of 31. She fought fiercely for years, but when her breast cancer came back despite aggressive treatment, the family knew it was time to enlist hospice care.

“Jess wasn’t laying in the bed waiting to die,” Thompson says. “She was able to stay home for three months, get the support she needed, and spend time with her four children. She was given medications to help her be comfortable and functional for as long as she possibly could. She was at peace.”

Her hospice team managed her pain and symptoms, brought in a hospital bed and other equipment and provided frequent medical care, services that Thompson says are a blessing for patients as well as their caregivers.

Bon Secours is one of about two dozen hospice providers in Central Virginia. On any given day, hundreds of Richmond-area nurses, chaplains, social workers, home health aides, volunteers and physicians are paying home visits to terminally ill patients, providing them with critical and compassionate support.

Destigmatizing Hospice

While the concept of hospice care dates to medieval times, the first hospice practice in the United States was founded just 50 years ago by a nurse, two doctors and a chaplain who believed patients should pass in their own comfortable environment. Since then, it’s expanded to many providers in all states with two major directions: palliative care and hospice care. In most cases, patients in palliative care are still seeking active treatment, while patients in hospice have a terminal diagnosis and have forgone or exhausted treatment options.

Zach Holt, CEO of Crater Community Hospice in Petersburg, says after 15 years in the business he’s still surprised how many people have misconceptions about hospice. His company is part of a statewide coalition of hospice services working to raise awareness of its benefits. According to a recent report by American Health Rankings, Virginia is 30th in the nation for hospice use, with less than half of Virginians who are eligible for hospice choosing services.

“There’s a big stigma,” Holt says. “People think it’s designed for your last days of life when, in reality, it’s designed for your last six months of life. Studies have shown people across all disease states typically live longer on hospice than they do not on hospice. Our specialized teams are equipped to give patients a higher level of comfort.”

Trish Evans, a registered nurse and director of VCU Health Hospice, admits that hospice is a scary word and fear is a contributing factor for low utilization. “People don’t want to think about death and dying,” she says. “But it’s not about giving up, it’s about your quality of life. It’s a choice on how you want to spend your time with a terminal diagnosis if those are the cards that have been dealt to you.”

Holt encourages Virginians who qualify for hospice to sign up earlier, before they are actively dying, to receive the full benefit. According to the National Hospice and Palliative Care Organization, the median stay for patients in hospice care is 18 days, while Medicare approves stays that are 10 times longer.

Another misconception that leads people to avoid hospice is the possible high cost; in most cases, it’s financially reasonable. According to Debt.org, more than 90 percent of hospice care is covered by Medicare, and patients may be covered through private insurance and charity care.

On the personal end, Evans points out that some believe hospice patients are permanently bedridden at home. “Life can go on,” she says. “There are hair appointments and vacations and family events. We want to give patients the support they need and the comfort they need to continue to do those things before the end stage of their disease.”

Pediatric Hospice Care

When the unimaginable happens and a child is given a life-limiting diagnosis, Noah’s Children provides palliative and hospice services at no cost to families. While run by Bon Secours Richmond, Noah’s Children partners with all health systems in Central Virginia to help families navigate the most harrowing times.

In addition to nurses, physicians, social workers and chaplains, Noah’s Children employs a music therapist, an art therapist and bereavement counselors who visit the patient’s home. They also offer programming for parents and siblings. Nurses are available to attend doctor’s visits, helping parents manage complex treatment plans from multiple sub-specialists.

“We want to debunk the myth that we’re focused on death,” says Dr. Kelly Lastrapes, Noah’s Children medical director. “We’re focused on the best life children can live for as long as they can.”

Planning Ahead

Holt recommends that everyone of all ages have an advanced directive, a legal document that indicates an individual’s health care wishes. “As a society, we don’t like to talk about death, but you have to get uncomfortable and have those conversations,” he says. “I see close-knit families get ripped apart when they haven’t discussed end-of-life care. One sister thinks one way, one sister thinks another, but Mom never told them what she wanted.”

Holt advises families to discuss financials and set realistic expectations. “You hear parents all the time joke about not putting them in a nursing home, so discuss the alternatives,” he says.

As a society, we don’t like to talk about death, but you have to get uncomfortable and have those conversations.
—Zach Holt, CEO of Crater Community Hospice

Some states with high hospice use, like Oregon and Maine, have also passed legislation allowing patients with terminal diseases to self-administer life-ending medication. The Death with Dignity National Center reports that legislation not only eases suffering but brings important conversations about death and dying out of the shadows and into the spotlight. The Virginia Senate passed a “Death with Dignity” bill in February, but members of the House of Delegates chose to table the bill until 2025.

Richmond-area hospice experts recommend that any time a family member has been diagnosed with a terminal illness, they should work with their medical team to prepare a treatment plan as well as an end-of-life plan.

Lastrapes adds that it’s helpful to keep a 10,000-foot view of the patient’s care, understand the trajectory of the prognosis, and set goals early on. While life is filled with unknowns, surrounding yourself with the right people can help ease the pain.

“When you’re born, you have a room full of people to support that baby,” Evans says. “It should be very similar when your life is over. It’s the one thing we’re all going to experience. You should have the ability to surround yourself with your family and your pets and those people who can support you and keep you comfortable.”

Choosing a Hospice Provider

  • Start your hospice conversation with your health care team and ask about preferred partners.
  • Medicare patients can enter their ZIP code at medicare.gov to find certified providers in the Richmond area.
  • Talk to friends, family and neighbors about their experiences with hospice.
  • Once you narrow down several hospice providers, interview them about specific services, additional resources, areas of specialty, organizational culture, religious affiliation and other differentiating factors that are important to you or your family.

Complete Article ↪HERE↩!

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Nobody Likes Dealing with Death

— Until They Attend One of Amy Pickard’s Humorous ‘Good To Go!’ Parties

By Cheryl Maguire

When Amy Pickard’s mother died suddenly in 2012, she was understandably grief-stricken. But she also felt frustrated and overwhelmed, since her mother didn’t plan ahead for her death.

“I would have given anything to talk to my mom just one more time, but it wasn’t to hear her tell me she loved me; I needed her to tell me the friggin’ Wi-Fi password!” Pickard says.

Since her mother lived far away, Pickard didn’t know what bills needed to be paid or what to do with her mother’s now-deceased body.

“I just said, can you put her [body] on ice? Because I have no idea what is going on,” Pickard recalls. In an effort to normalize death and create a death-positive movement, Pickard teaches people how to throw a death party and add some humor to the inevitable and often daunting end-of-life duties.

Dealing with uncomfortable death duties

Pickard refers to all of the different decisions that need to be made and tasks that need to be completed after someone dies as “death duties.” She says these duties are “the hellscape of details forced upon a grieving loved one after their person dies.” This includes responsibilities such as cleaning their house and sorting their belongings, making funeral arrangements, settling their finances and closing their estate.

After her horrible experience with her mother’s death duties, Pickard wanted to help others avoid the same issues. “I was preaching the gospel of advanced planning to my friends,” she says. Surprised at how her friends took to the lessons, Pickard thought, “I have a message here. And it’s landing.”

In 2014, she created a long list of questions related to when someone dies. The list was a booklet called Departure File, which she still sells today. She included, “all the minute, everyday things that came up that I had no answer to, like ‘Do you have a storage space?’”

“Good To Go!” death parties are changing the narrative

Pickard realized most people think of death and dying as morbid and creepy, so they don’t like to talk about it. She also knew most people would probably not want to answer the questions in the Departure File, so she decided to create a party where everyone filled out the answers.

“I thought, ‘I’m a good communicator, I’m an extrovert and I have a sense of humor, so why not have a party?’” she says.

During the parties, Pickard tapped into her sense of humor by creating death-themed soundtracks with songs like “Another One Bites the Dust” and “Stairway to Heaven.” She also had everyone bring a potluck dish based on the recipe of a loved one.

She didn’t have a business plan when she started; instead, she learned as she went along and as her business evolved. Her parties are now referred to as “Good To Go!” parties, though guests have also described them as “Death Tupperware Parties” or “Fete du Mort” shindigs.

People who attended the initial parties “were blown away by it—all of us felt a beautiful kind of electricity in the room,” Pickard recalls, noting that no one else was hosting these types of events. “It is unbelievable how important this is, and how in denial our entire society is over the one absolute positive thing that we know with 100% certainty is going to happen,” she says.

Normalizing the death-positive movement

In a bid to overturn this cultural thinking, Pickard considers herself to be part of the death-positive movement—a way of thinking that encourages people to have end-of-life celebrations and speak openly about death, dying and corpses.

The modern-day concept of the death-positive movement dates back to the 1970s, but the death-positive movement was further popularized in 2011 by Caitlin Doughty, a mortician who believes people should change their perceptions about death. On her website, The Order of the Good Death, Doughty says death should be a part of your life. “Accepting that death itself is natural, but the death anxiety and terror of modern culture are not,” Doughty states on her website.

When Pickard’s father died, the experience was opposite that of her mother’s death. Pickard attributes that to the fact that he filled out the Departure File and talked openly with her about advanced planning. When she first created the Departure File, she wanted to help others and didn’t consider how it could one day help her. Like her mother, her father died suddenly. When he was intubated in the hospital, she gave a copy of his Departure File that included his advanced care directive to the staff. Their response was, “No one ever does this. This is amazing.”

Before Pickard’s father passed away, she said to him, “You know that everything is taken care of.” She says the look of peace on his face in response brought her comfort. It was at that moment she understood that advanced planning also brings peace to a person before they die.

“It was such a weird, ironic moment that the company that I created for others actually helped me and helped my grief,” she says. “With [my dad’s] instruction, I felt empowered. I felt I was honoring him.” The directions he provided also eliminated any uncertainty she may have faced making decisions about duties related to his death.

Planning for death is planning your life

Even though “Good To Go!” parties are humorous and lighthearted, there are still times, understandably, when people are grieving. Pickard handles these situations by offering a tissue and trying to help them understand that, “when you plan for your death, it’s actually planning your life.”

She explains that people prepare for natural disasters by stocking up on candles and getting a generator, but they don’t plan for their death. “We spend more time building a burrito than we do thinking about what we want to happen when we die,” she says. Advanced planning is a way of letting people know how you want to be remembered, she adds.

Pickard recently expanded her business to help people declutter their homes while simultaneously creating advanced planning regarding their material things. She refers to this task as legacy organizing.

“I am helping people organize their homes for their death,” she says. She explains that her services are similar to that of a “death concierge.” She says, “I encourage people to clean out their places with their families. And that way, you make new memories. It’s actually fun.”

This lighthearted approach to death and advanced planning underscores Pickard’s mission with “Good To Go!” parties. “I’m not a doctor; I’m not a lawyer. I am just literally a girl that’s lived through grief and wants to help other people get through it too.”

Complete Article ↪HERE↩!

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Death Cafes

— Where people talk mortality over tea and cake

Death Cafes can be held anywhere but one of the golden rules is there will be ‘refreshing drinks and nourishing food – and cake!’

The meet-ups are intended to offer a judgement-free and respectful space to discuss the end of life

By Chas Newkey-Burden

Once a month, in countries from Afghanistan to Zimbabwe, people are gathering to eat cake and talk about the typically taboo topic of death.

At Death Cafes, said Emma Freud in The Times, people with a range of interests in the subject come together to discuss “the end of life experience in any of its forms”, in what is widely viewed as part of the “death positive” movement.

The background

Death Cafes were founded by Jon Underwood and his mother, Sue Barsky Reid, a psychotherapist. They were inspired by the work of Swiss sociologist Bernard Crettaz, who had developed a project called Café Mortel, where people would gather to talk about death.

The first Death Cafe in the UK was held at Underwood’s home in Hackney, east London, in September 2011. It was a “wonderful occasion”, said the Death Cafe website, and more were then held in places including “funky cafes, people’s houses, cemeteries, a yurt and the Royal Festival Hall”.

The four rules are that Death Cafes are offered on a not-for-profit basis; in an accessible, respectful and confidential space; with no intention of leading people to any conclusion, product or course of action; and that cake is offered. The gatherings are a “discussion group rather than a grief support or counselling session”, said the website.

Death Cafes spread nationally and internationally, with the first overseas version held in Columbus, Ohio, in 2012. There have now been more than 18,000 groups worldwide, but “they seem to be most prevalent in countries where people are uptight about the subject” and “hence we have more than 3,400 in the UK”, said Freud.

Underwood died suddenly in June 2017, at the age of 44, and Death Cafe is now run by his mother and his sister, Jools Barsky.

The latest

Visiting a Death Cafe in London, Freud found “there were no formal objectives” or “grief counselling”, but there was “tea and, naturally, cake – that great lubricant of awkwardness”. The discussion was “riveting” and free of “small talk”. A woman with terminal cancer spoke and “because we were strangers, her words had no consequences she would need to deal with, and that seemed to set her free”.

After joining a Death Cafe in Willesden, northwest London, Gaby Wine wrote in The Jewish Chronicle that it was “heart-warming” that “while not everyone agrees with one another, everyone shows great respect”. Despite the subject matter, she had a “surprisingly jolly chat”.

Attendees will “seamlessly switch” between “sombrely discussing subjects like the difference between suicide and medical aid-in-dying” to “joking about the sayings they’d want written on their tombstones”, said The Huntington News.

The reaction

A newcomer to her area, Freud “learnt more about the soul of my neighbourhood in those two hours than I had in the previous two months”. There was “joy” in the “deep connection with a hall full of strangers”, the “licence to show vulnerability without judgment” and “the privilege of being granted access to the most tender and unprotected place in the hearts of my neighbours”.

During the Victorian era people hired professional mourners to “weep” at burial sites and funerals and help attendees “feel safe enough to do the same”, said Anna Wolfe on Huck. And “in a way” Death Cafes provide “something similar”.

Meanwhile, if you want to find or even host one, check the organisation’s website. It’s easy to set one up, wrote Wolfe. “All you need is a set of Death Cafe guidelines, a venue and the ability to bake or buy a pack of Mr Kipling’s.”

Complete Article ↪HERE↩!

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What does a death doula do?

— Alua Arthur on her ancient profession

Alua Arthur

Death anxiety and end-of-life planning are all in a day’s work for a care worker who helps shepherd clients off this mortal coil

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There is little about Alua Arthur that emanates the deathly or morbid. The 45-year-old Los Angeles resident has a radiant, gap-toothed smile, a propensity for citrus-colored nail polish and an inclination to laugh before she finishes a sentence.

But not long ago, she was a Legal Aid worker struggling with depression, frequently taking breaks to travel around the world, attend music festivals, visit friends and enjoy short-lived romances with fellow searchers. While backpacking in Cuba, she boarded a bus and sat next to a woman around her age who revealed that she had been diagnosed with uterine cancer. What followed was an hours-long conversation that sent her world off its axis.

“It was strangely intimate and comfortable and hilarious,” Arthur said. “There was such an ease in our new friendship that allowed us to travel to the depths together, and discuss our fears and hopes.” Not long after she came home, her brother-in-law was dying of cancer, and she threw herself into caring for him, her sister and her then four-year-old niece.

Within a few months, she followed her gut and enrolled in a training program to become a death doula, an end-of-life care worker who helps people tie up their affairs and feel more at ease as they face the inevitable. The job can involve providing company, talking through clients’ feelings about estranged friends and family members, and helping them look back on their lives and identify the moments of which they are proud and also their regrets. It’s a calling that Arthur, who grew up in Colorado as the daughter of political refugees from Ghana, details in her rousing memoir, Briefly Perfectly Human.

A celebratory spirit pervades the book. The flip side of thinking about death all day, after all, is remembering how fleeting life is and relishing the mere act of living, as well as the people and natural beauty that surrounds us. Arthur, whose company, Going With Grace, has trained over 2,500 death professionals in 17 countries, spoke with the Guardian about her end-of-life work.

The death doula seems to be gaining popularity, on the heels of the birth doula. Do you sense that we will be hearing about death doulas more and more?

The death doula is very ancient, because as long as humans have been alive, they’ve been dying, and others have been supporting them into their dying. But the profession and the formality of it have been rising in the modern world. It’s similar to birth doulas in the concept and in the work that we do – we care for and celebrate one another. But there’s now a Fortune 500 company that has a death doula benefit as part of their benefits program, where employees get reimbursed to seek the services of a doula for somebody that they consider family. They can help be supportive for somebody’s dying and get reimbursed. Isn’t that pretty rad?

You talk a lot in your book about the difference between empathy and compassion. Can you walk me through that?

I’ve been really empathic all my life. I feel things very deeply. And I feel that I’m feeling things on behalf of other people, but also what I’m feeling for them are things that I’ve made up in my head about what the experience is like. And when I’m doing that when somebody is dying, it’s really dangerous because I don’t know what it’s like to be dying. I can imagine it all I want, but I don’t know what it’s like, and that can be really problematic. This may be a little rude, but I feel like empathic people, sometimes we’re pretty self-aggrandizing in some way. What we have to do when we’re working with people that are dying is practice lucid compassion, which says: I don’t know what it is that you’re experiencing, but I’m down. I’m here with you, and I’ll ride with you.

Book cover of Briefly Perfectly Human, by Alua Arthur.

What does a typical week in your work life look like?

I’m not seeing clients currently – I’m way too busy. These days I’m focusing on spreading public awareness about how we die, hoping to help more people get support when they’re dying, and honestly help more death doulas get clients. But when I was seeing clients, I would have probably just one client whose death looks like it’s coming soon, and then multiple end-of-life-planning clients. And I’d also be doing death meditations, and hosting workshops and helping healthy people plan for the end of life, and helping somebody who has a serious illness.

So not all of your clients count as end-of-life patients?

Many clients are people that carry a lot of death anxiety. There was one client who I met with maybe for two years. His mom had died and his death anxiety was through the roof after she died. And so once a week for almost two years, he would sit and talk about where death anxiety popped up in his life that week, and we’d work through it. I’d offer tips and tricks and we’d do exercises. There was one young woman, she was 22 years old and her parents were in their 50s. But she just thought that it’d be wise to do end-of-life planning and I thought, oh, cool. Let’s do it.

There is a trend in our culture to fetishize the “birth story” but people back off from discussing death, let alone the “death story”.

We want to pretend that it’s not happening. And yet it’s happening every day, all around us. Not only in nature, but there’s probably somebody a few doors down from your home who knows somebody who’s in the process of dying. And we don’t have any skills to talk about our experience. We don’t make space for grief.

But I feel like it’s starting to shift. For example, this television series, Limitless, with Chris Hemsworth. In one of the episodes he explores the limits of his physical body. Even though the previous episodes were all about how he could live longer and better, a whole one is thinking about death.

Our world is lousy with biohackers trying to stave off death.

We can’t escape it. That’s kind of the point. People work so hard to create all these workarounds and try to deny it in some capacity. But by denying it, they’re making it more real. Like, why not just spend the time talking about your fears of death?

In your book you don’t hold back about your battle with depression. How does that inform your work?

Well, for starters, my life prior to death care was just kind of a hot mess. There was no direction, no purpose, but there was plenty of adventure. I was the lawyer working at Legal Aid and who was broke, saddled in debt. Prior to death care, I was always seeking something – you know, something that made me feel alive. I sought out big adventures, traveled to faraway places, ate different foods. I used to go to Burning Man but I haven’t been recently. I think that part of me has always been seeking peak experiences in life. That part of me lends itself really, really easily to death care because a big part of my relationship to death is grounding myself in this body of this life for now, and filling it up as much as I can.

What’s the number one question people ask you when they’re dying?

They always ask what the meaning of it all is. And I don’t know! I know that maybe the locs and the dark skin and the jewelry make people think that I’m talking to other beings all the time, that I’m mystical. But I don’t know anything.

Two of my friends recently lost their parents and I’ve been struggling with writing letters to them. Do you have any advice?

Sometimes the right thing to do is just to show up and say, like, “This is really, really hard but I don’t know what to say, but just know that I care about you. Just know that I know this happened. I don’t know what you’re experiencing. And this is uncomfortable, but I want you to know that I’m here and I care about you.” And then you’ll probably get a thank-you, and if they want to talk about the person they lost, they will, and if they want to talk about the Kardashians, they will.

How does your current work influence the way you live now?

I think I give myself a lot more grace for the mistakes I make and my sadness and my fear and my doubt, and the extra pounds that I’m carrying. I give myself a lot more freedom to enjoy food. Whereas before, I was so concerned with being skinny and exercising, and now I’m like, fuck it, like I’m so grateful for this body that carries me around Earth. Plus, I love chocolate cake.

Complete Article ↪HERE↩!

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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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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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Illness and death are facts of life

– Buddhism teaches us to be mindful but not fearful of it

‘It doesn’t take a deep understanding of Buddhism to acknowledge that sickness, old age, and death are inevitable facts of life.’

The art of developing a healthy relationship with our own mortality lies in neither avoiding the reality of suffering nor obsessing over it

By Nadine Levy

Over the last year, I have spent a lot of time eating pre-packaged sandwiches in hospital cafeterias. I often joke that those of us who are lucky enough to hit 35 will have at least one, if not multiple, serious health scares every year. At some point, however, we will face much more than a simple scare – serious illness can impact anyone, any time, with little notice.

As well as being a source of stress, pain and discomfort, unwanted health diagnoses have the radical potential to upend our lives and ignite burning questions relating to impermanence and human suffering which we may not have considered in the past. We may come face-to-face with our shared vulnerability for the first time – which was present all along – as well as the indisputable fact that we are all but one breath away from a health crisis or poor prognosis.

Working with our mortality in a meaningful way can be challenging. For one, we live in a death-averse culture in which comforting and life-affirming ways of thinking and talking about illness and death are rare. Further, the unprecedented nature of Covid-19, as well as an increase in self-diagnosis via the internet (“cyberchondria”), has been associated with an overall rise in health anxiety.

In the founding story of Buddhism, the historical Buddha, a sheltered 29-year-old prince, ventures out of his palace and for the first time encounters sickness, ageing, and death on the streets of what is now Nepal. These sights impact him in such a visceral and immediate way that he is compelled to relinquish his wealth and material comforts to enter a life of asceticism, contemplation, and reflection.

It doesn’t take a deep understanding of Buddhism to acknowledge that sickness, old age, and death are inevitable facts of life. Many of us know this intimately. However, we may not realise that the more we deny this truth and cling to a fantasy of perpetual health and youthfulness, the more we suffer.

This is not to dismiss our attempts at living a healthy lifestyle that prevents ill health. Indeed, moderation and cultivating physical and mental wellbeing are at the heart of Buddhist practice. Still, we face the cruel irony that even our best efforts to address risk factors through diet, exercise, and supplementation, often fall short. Mark Twain once said, “I take my only exercise acting as a pallbearer at the funerals of my friends who exercise regularly.”

On my first overseas trip as a child, I witnessed individuals with debilitating and treatable illnesses in plain sight. One afternoon, I went to a cafe for lunch and couldn’t swallow my sandwich. As hard as I tried, I could not force the muscles in my throat to perform their job. There was a lump in my throat that persisted. The sharp edges of the human condition had suddenly shifted from theory to reality.

I encountered Buddhism a few years later and I was relieved to find an approach that did not look away from what was true: the body deteriorates, decays, and changes. It is made up of the elements and is of the nature to sicken, age, and die. While death is certain, the time of death is uncertain. Do not turn away from your mortality.

Later, I downloaded an app that reminded me daily I was going to die, though I’m not sure I needed the reminder.

Was this a type of exposure therapy that would liberate me from my worst fears, or was it simply making my anxiety worse?

Years later, I confided in a Buddhist teacher about my ongoing health anxiety, and he said something that changed the way I now view the Buddhist practice of death contemplation: the art is not to be anxiously fixated on death but simply mindful of it. The invitation was to extend a gentle and curious gaze to our fear of death itself. This seems a subtle point, but one that has enormous significance.

First, it invites us to bring awareness to how we relate to and perceive our impermanence. What is it that scares us exactly? The psychotherapist, Irvin Yalom talks about death and health anxiety being a placeholder for a range of natural existential concerns – from fear of pain, loss, and separation from loved ones to terror of our ultimate annihilation. At times, it correlates with deep disappointment that our life has lacked meaning or purpose.

Once we become familiar with what “health” or “death” represent in our unique psyche, we can bring attention to when and how these fears present themselves. Do particular sensations, memories, or emotions trigger these fears? Are they felt predominantly in the body or in a mind that races and tries to fix and control? Do you find yourself reaching for your phone? Instead, can you remain in the here and now, with a racing heart, lump in your throat, images of a poor prognosis, or your final breath? Can you stay put and allow the fears to arise, change, and dissipate? The practice is to avoid the extremes of obsessing about the finitude of our life on the one hand and avoiding our mortality on the other. Acceptance and wisdom lie in the place in between.

You and I will die. Can we stay steady in our seat knowing this with certainty, while remaining open to a broader indescribable mystery which may well outperform our wildest expectations?

Complete Article ↪HERE↩!