How Learning About Death Helped My OCD

By Marianne Eloise

Everyone is at least a bit afraid of dying. Yet that fear is the driving force behind so much of life. Anything we achieve is because we know death will come: forming relationships, writing books, having children…these are all a result of our fear of an inevitable end.

Perhaps, with infinite time on Earth we’d put far less work into living. A healthy awareness of our own mortality in our daily lives, then, can be a good motivator. But when is it too much? The answer, especially for people like me with obsessive compulsive disorder (OCD), is when it becomes an obsession.

For as long as I can remember, I’ve suffered with OCD. Like many others, my intrusive thoughts revolve around death-adjacent topics. OCD presents diversely but, simply put, sufferers have intrusive thoughts that they cannot control. In an attempt to control those thoughts, they’ll perform compulsions.

My own death didn’t necessarily frighten me. For a child plagued by constant, violent images and compulsive behaviours, it seemed a bit too much like freedom to be scary. It’s no coincidence that, held prisoner by intrusive thoughts and compulsions, people with OCD are 10 times as likely to die by suicide.

Integrative psychotherapist and OCD specialist Craig Shirley of the OCD Treatment Centre tells me that my experience is common. He says that many people with OCD don’t fear death so much as they fear the uncertainty and the idea of “missing out on life”.

“People with OCD often want to be able to have complete certainty around particular things, which of course in this case they can never have,” Craig adds.

Twenty-six-year-old Zoe tells me that she developed OCD shortly after her grandpa died. “My family has always been my safety net, and my grandpa’s death woke me up to the fact that that could all slip away,” she explains. “I remember watching Mulan, the scene where the ghosts of her ancestors are fighting in the temple. I had a panic attack knowing that if my family died, they would not come back as quirky ghosts. They’d just be gone.”

Zoe adds that she became desperate for things to go back to how they were before, which led her to perform rituals to “heal” her family. “Because change, illness and death are inevitable, I became hysterical as the initial rituals became ‘less effective’. I revised them all the time, my routines becoming longer and more obvious to everyone around me. This only worsened after I saw my nana die a couple of years later.” This perceived responsibility to “help” everyone at the expense of your own mental health is common with OCD sufferers – we often believe that we’ve somehow been tasked with saving everyone through our rituals.

As a child, I would obsess over my own demise, keeping extensive diaries so that I could remember everything I’d ever done. I tried to control the inevitability of death, making promises to an imaginary OCD God to be good, to do my rituals as long as nothing harmed me or my loved ones.

While Zoe has had therapy that’s brought her rituals under control, she still obsesses over death and health. “In the last five years I’ve had two friends die and in the aftermath I went crawling back to some of the rituals I performed as a kid, like a comfort blanket. I felt responsible and tried to redeem myself,” she says.

Similarly Suzi, 32, who is Catholic, told me that while death was a constant spectre for her, the idea of heaven placated her anxieties. After getting treatment for OCD, she found that in overcoming her obsessive thoughts and OCD-related rituals, she also lost the Catholic rituals she had always fallen back on.

With that loss of faith, Suzi says she also lost the “safety net” of heaven. “My OCD has always been centred around fears for my own wellbeing, and not trusting others with it. I was terrified of suffering, pain and death. I no longer knew what happened when people died, and I struggled with the concept of people not having a soul, of my conscious mind ceasing to exist when I died.” She adds that after being diagnosed with chronic illnesses, her fear has transformed. “Where once my fear of death was about what happens after people die, it’s now about not achieving the things I want to.

A sudden death scares me less than the knowledge that my life will end and I have no control over when. As a child, I would obsess over my own demise, keeping extensive diaries so that I could remember everything I’d ever done. I tried to control the inevitability of death, making promises to an imaginary OCD God to be good, to do my rituals as long as nothing harmed me or my loved ones.

This fear hasn’t gone away. However, experiencing actual loss in my life has turned death from a haunting spectre into a very real, looming possibility. It has also made me aware of how badly I handle grief, which makes the possibility of dying scarier.

The more I enjoy something – a person’s company, a moment in time – the more aware I am that everything is temporary. We cannot control that inevitability and as an adult, I know that, so the way my obsessive thoughts manifest is different from the rituals I used to have. I try and fit as much as I can into my life, to the point of obsession. I record everything. If I have dinner with my grandad, I’ll note down the things he says afterward, unable to enjoy the present for fear of the future. Transience is scarier to me than death; the idea that anything we love can be ripped from this Earth at any moment is at once what drives and paralyses me. The rise of an insistent obsession seems gradual until the point where it takes over everything.

Despite the fact that around 1.2% of people in the UK live with OCD, it’s still one of the most misunderstood and misrepresented disorders.

The experience of having intrusive thoughts is difficult to explain to someone without OCD. Imagine you’re having a relaxing time, say a nice bath. Out of nowhere, you’re hit with a graphic image of a dead loved one. It’s upsetting, no matter how often you’ve experienced it. So to get rid of the thought, you might perform a compulsion, like counting everything you see. While my compulsions have gotten better with time, my obsessions have not. Whether it’s images or troubling thoughts, I feel like I have no control over what I think about.

Despite the fact that around 1.2% of people in the UK live with OCD, it’s still one of the most misunderstood and misrepresented disorders, which makes it difficult for sufferers to be honest. Confessing to a friend that you obsess over violent images against your will is daunting. It leaves sufferers feeling lonelier, which serves to exacerbate the disorder.

I spent the first few years of my life in the dark about my condition, thinking that I was “wrong”. In the media, OCD has typically been represented as an obsession with cleanliness. While that is sometimes the case, the ‘compulsions’ – the only visible part of OCD – are often the least harrowing. What goes on in a sufferer’s brain is for many the worst part of the disorder, and harder to represent.

OCD is a way of trying to control an uncontrollable world. Loss is the most unruly, devastating thing we can go through. Perhaps that’s why entire religions have organised around trying to make sense of it.

Of course, not everyone who’s afraid of death suffers from OCD. Craig tells me that the noticeable difference is about “how much time the OCD is taking up of someone’s life”.

He says that while many people without OCD want reassurance or ruminate over things, you know if you need to seek help when the symptoms are “getting in the way of everyday activities” or if you’re “becoming increasingly obsessed around a particular theme or worry”.

When you’re constantly assaulted by painful thoughts against your will, it might seem counterintuitive to seek them out. But with OCD, the most effective form of therapy is Exposure Response Prevention, wherein a sufferer confronts images and situations that they find uncomfortable and ignores the urge to perform compulsions.

Zoe tells me that a combination of therapy, talking to fellow sufferers and discussing death openly has made her rethink dying. This works for me, too.

The one thing that has helped me to feel more in control of my thoughts has always been learning. That can take many forms: educating myself on my disorder but also educating myself on what I fear. When I was so scared of arson that I would go home to check if my house was on fire, I taught and reminded myself of the (slim) possibility of that ever being the case.

And so, to deal with my fear of death I started to learn more about death positivity. First, I did this through Caitlin Doughty, the mortician and YouTuber. After reading Doughty’s books, I learned that she got into the death positivity movement when she developed OCD after seeing a child die aged 8. Her fear of death, and her rituals surrounding it, forced her to confront her fear head-on. Now she has three books under her belt and an impressive career tackling “death denial”.

The one thing that has helped me to feel more in control of my thoughts has always been learning.

From there, I read more and more about death, death rituals and the way other cultures embrace and accept death. I took practical steps, like thinking about what I want when I die. Sure, it’s morbid. But it makes me feel less as if I’m leaving this Earth against my will.

Now, I genuinely believe that my OCD was worsened by our culture of silence and denial around death. We often describe death in euphemistic terms – people “go to sleep”, they’re “in a better place”, etc.

Open conversation about death has been promoted by death acceptance advocates like Doughty’s collective Order of the Good Death, but the movement is still “alternative”. Being euphemistic only makes us deny death more, but it’s been proven that open, non-euphemistic conversation informs people and goes some way toward preparing them for the unimaginable. It makes us more able to handle grief.

The rise of death doulas, who coach people through dying, points to a more accepting attitude towards death. Death doula Shelby Krillin tells me that she frequently encounters people with OCD who have anxieties around death, and that it often stunts our ability to grieve. “It hinders deep conversations and connections with the ones we love who are dying, and the side effect is superficial conversations. When that happens, feelings, wishes and thoughts go unexpressed,” she tells me, adding that sitting with death is “true vulnerability.

She points to the Buddhist attitude of “embracing the groundlessness of life” as a pointer for starting to discuss death. “What we don’t know, we fear. Talking about death gives it three dimensions. You get to look at it from all angles. When people start truly grasping their own mortality, it makes our lives more vivid and wondrous

Like many anxious people, I fill in the blanks with the direst consequences imaginable, a process known as catastrophising. If my boyfriend is at the shop too long or my grandad doesn’t answer the phone, my brain tells me they’re dead. If my dog is sick, she’s dying. If I smell smoke, my house is on fire. Filling in the blanks with the truth and soothing myself with facts is reassuring.

Craig tells me that honesty is the best approach. “Accepting death isn’t necessarily about just finding a different way of looking at it, but also about accepting more deeply the things that we as human beings can and cannot control, and learning to accept that,” he reflects.

Accepting the things we cannot control is a necessary part of overcoming most manifestations of OCD. As death acceptance becomes less alternative, it’s my hope that we can all learn to talk openly about the inevitable end we all face and my belief that a culture of honesty might have helped me as an obsessive compulsive child.

Complete Article HERE!

Can We Talk … About Death?

Some recent, intriguing examples of how the conversation is evolving

By Ann Oldenburg

When the former TV news anchor spoke at Georgetown University at an event titled “The Healing Power of Communication” in August, 2019, she said she wished she had talked more to her late husband, Jay Monahan, about his impending death before he succumbed to colon cancer at 42 in 1998.

“It was just terrible,” Couric said. “After nine months of trying desperately to figure out some way to manage it, he lost his battle — and it was devastating.”

She explained that she’s writing her memoir and recently had drinks with Monahan’s two doctors to “revisit” those days.

“I told them how guilty I felt about so many things about Jay’s illness and that we never really discussed, you know, even entertained the idea that he might die. I was so afraid to give up hope, and make him give up hope, that we never discussed the alternative, which I really regret,” Couric said.

For example, she said, “He never wrote a letter to our girls” — daughters Ellie, 28, and Carrie, 23.

“I honestly believe that we, as a species, will do better if we come to terms with our mortality earlier in life.”

The fine line between maintaining hope and offering a reality check is tricky territory, said Dr. John Marshall, oncologist and director of Georgetown’s Ruesch Center for the Cure of Gastrointestinal Cancers, who was interviewing Couric at the event.

“As soon as we enter that world, we see the light go out,” Marshall said. “We don’t like doing that. So the balance of being on point and brutal, if you will, and factual, versus that maintaining of hope…”

“It must be a dilemma,” Couric responded. “For me, I erred on the other side — trying to protect Jay from information he had a right to hear.”

So, which is more important: knowing the reality of your situation or maintaining hope?

Most of us don’t want to hear bad news, especially this kind of bad news. And most of us don’t want to talk about it, or plan for it. And yet, in recent years, the thinking about this is beginning to change as our aging population starts changing its views of death. More hope, less grim reaper?

Is Dying About Control?

HBO’s documentary Alternate Endings: Six New Ways to Die in America, released Aug. 14, 2019, explores some of the ways Americans are finding meaning as life ends. And all of the ways show that the key is taking control of as much, or as best possible, of the end of life.

The documentary includes new types of urns, personalized obituaries, eco-friendly caskets, drive-thru funeral viewing, living wakes (which force people to say things to each other while still alive), space burials, green burials (in which the body is wrapped in biodegradable material in a shallow grave), memorials in an underwater “reef vault” and a seriously ill man who opts to take advantage of physician-assisted death to end his life peacefully and surrounded by family.

It’s all part of a $16 billion U.S. funeral industry that is being disrupted.

“The baby boomer generation has had a greater degree of control over their lives than any other generation before them,” Alternate Endings filmmaker Matthew O’Neill told Axios in an Aug. 10, 2019, article. “It’s because every topic that’s taboo — be it sex, be it drugs — it’s all on television and it’s all being talked about. And death is the last taboo.”

Is Dying About Hope?

The film was released around the same time as the book A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death by Dr. BJ Miller and Shoshana Berger was on The Washington Post’s Top 10 bestsellers list. The book includes practical advice (take your favorite quilt to the hospital) and wisdom (“love” is what matters most in the end).

Miller, too, addresses the idea of hope.

“I honestly believe that we, as a species, will do better if we come to terms with our mortality earlier in life,” he said in an interview on the Today show Aug. 5, 2019. “Get used to exercising hope within the framework of life being short and precious.”

Boomers do seem to be getting better about not only facing death, but also embracing it. The Conversation Project, Death over Dinner project, Death Cafes — all have been propelling us towards a more open view of death for nearly a decade. Remember how Swedish Death Cleaning became “a thing” two years ago?

Maybe It’s About Hope and Control

De-stigmatizing death. Having a “good death.” Those are the goals.

The United Kingdom’s Academy of Medical Sciences installed “The Departure Lounge” in a London mall in May. It was designed to look like a departure lounge at an airport, complete with all that baggage we have, with the idea of getting people to talk about death. “Why can’t we say the ‘D’ word?” the website asks.

Packaged versions of the pop-up installation are now being offered to community groups across the UK to start a national conversation about death and dying.

As a student in Georgetown University’s new Aging & Health master’s program, I was treated to a guest lecture in our first semester by Becky Hsu, an assistant professor at Georgetown, who spoke to us about the Chinese concept of a “good death.”

Hsu explained that she had spent time in China with a woman who had already bought the outfit she wants to wear for her death: pants, shirt, shoes, earrings and purse.

The woman has an embroidered pillow picked out for her head to rest on. She had a portrait taken that will be displayed at her funeral. All of these things are neatly wrapped in a cardboard box that she proudly shows off to friends and family.

Explained Hsu, “It’s a happy thing.”

Complete Article HERE!

Some Blunt Advice About Your Death

Author and end-of-life educator Sallie Tisdale gets real about death and dying.

“We’re beginners at this. Everything you know falls away.”

By

Sallie Tisdale has advice for all of us future corpses. And that is to talk bluntly about death—especially our own.

Tisdale has worked in palliative care and is an end-of-life educator and Buddhist practitioner who holds workshops on death preparation. Her recent book, Advice for Future Corpses (and Those Who Love Them): A Practical Perspective on Death and Dying, was named one of the New York Times Top Books of 2018. In it, Tisdale explains the realities that come with dying and the importance of normalizing conversations about death.

Ideas of impermanence and rebirth after death are tenets of Buddhism, yet Tisdale finds they don’t make the prospect of dying easier to grasp. At 62, she still finds it difficult to imagine herself as a future corpse. When death hits close to home, everything feels clumsy and uncertain, she said. “We’re beginners at this. Everything you know falls away.”

Rather than planning too meticulously for  a “good death,” Tisdale suggests adopting a “mastery of death”—just coming to peace with the fact that we all must die eventually—because we can’t know how our death will go.

Still, that doesn’t mean you shouldn’t prepare. I spoke with Tisdale, and here’s what she suggested we can do.

Sydney Worth: How has your experience with end-of-life care affected the kind of advice you give in your workshops?

Sallie Tisdale: A lot of what I do as a nurse is to normalize [death]. One of the things I want people to consider if they’re going to be with someone who’s dying, is what do you bring into that room. Are you bringing ideas of what you think is a good death that might start to impact how you care for a person? A good death—most people think that means peaceful, no pain, and at home with family. That’s not realistic for a lot of people. I want people to get in touch with their own state and realize that we’re all carrying around some kind of idea about death.

Worth: Where do you think our avoidance of death comes from?

Tisdale: We in the modern West are in a unique position. In less than 100 years, [death has] disappeared from the home in the U.S. That change happened because families became more mobile and scattered. It’s the current generations that have not been exposed to it very much.

Worth: So, this lack of exposure is a result of modernization?

Tisdale: We have a fantasy that we’re going to die in our home like we did 150 years ago, but that world doesn’t exist anymore. [Death] may not look like the fantasy we’re still carrying around. A body gradually loses all of its integrity as we die. We need to say you might have diarrhea at 3 in the morning. How is that going to be handled? And how does that fit into your fantasy? I like this idea of a mastery of death meaning that I am at peace in myself. My dignity and self-worth have nothing to do with what happens to my body.

Worth: Can we start mastering death now?

Tisdale: Notice I didn’t say “master” death, because we don’t get to stop it. Mastery of death would mean acceptance. It’s this old Zen saying, “We love the china bowl because it will break.” We love the fragile. And that’s why we love each other—because we only have so much time. We see the fragility of change.

Worth: What are some things people forget to do before they die?

Tisdale: An awful lot of people never tell their friends or family or doctor what kind of death they want to have. There’s nothing more difficult than being handed this awkward object of a loved one’s corpse and being told what to do with it in a moment when you’re in emotional distress. Why would we consign our family to make that decision instead of being willing to talk about it?

Worth: When should we start preparing for death, then?

Tisdale: Today.

Complete Article HERE!

My Dying Wife Has a Challenging Request for Her Funeral

She doesn’t want her estranged family to attend. I want to respect her wishes, but am not sure the excluded family members will.

By

My wife and I have been together for 30 years. Five years ago, she started dialysis, and that same year her mother’s divorce from my wife’s stepfather was finalized. Like many divorces, it pretty much split up the family.

My wife’s health is declining rapidly now, and she was also denied placement on the transplant list due to other health issues. We have been discussing her death, and my wife has expressed that she does not want her ex-stepfather or two of her siblings to attend her funeral.

When my wife made her wishes known to her mother, her mother said that my wife’s ex-stepfather has every right to attend the funeral because he raised her since she was about 8 years old, and that the two siblings also have every right to be at her funeral because they’re her brother and sister.

My wife explained that she did not want them at her funeral, because of how her ex-stepfather treated her when she was growing up and because the two siblings sided with him during the divorce. But her mother reiterated that she wouldn’t do anything to stop these people from attending the funeral.

I told my wife that the only way to make sure her wishes are met is to not tell her family about her passing until after she has been laid to rest. My wife agreed that this may be the only solution. Is this the right course to take?

Louis
San Antonio, Texas

Dear Louis,

I’m so sorry that your wife is ill, and I can only imagine that the prospect of her wishes not being met adds substantially to the stress you’re experiencing. But what seems to be getting lost in the understandable turmoil is that your wife is still here, which means she has agency over how she interacts with these people before the funeral happens.

Let’s back up for a minute. What’s complicated about funerals is that not everyone agrees on whom they’re for. Are funerals for the dying, comforted by the knowledge that they’ll be surrounded by friends and family when laid to rest? Or are funerals for the living, a chance to grieve in the company of others and get one final goodbye? Whose comfort and peace of mind are funerals for?

It sounds like you and your wife believe that funerals are for the person who died, and therefore this person should determine before her death who will be there. And it sounds like your mother-in-law believes that funerals are for the living, and therefore that your wife’s ex-stepfather and siblings will want to be there. You probably won’t resolve this philosophical difference—though understanding it may help you to be more compassionate toward your mother-in-law’s view—but you do agree on one thing: These family members mean to attend the funeral.

The question is, why? You don’t say what these relationships are like now—whether your wife is on speaking terms with these relatives; whether they know about her prognosis; whether they’ve shown any concern for her; whether, perhaps, you’ve kept your wife’s condition from them so they haven’t had an opportunity to share their concern. Nor do you say how your wife was mistreated growing up, or whether her mom has acknowledged the extent of the mistreatment. Maybe your wife spoke with her mom about her wishes because she’s no longer in contact with these relatives, but by not communicating with them directly, she puts herself in a position of powerlessness, which may be how she felt growing up and again during the divorce.

Banning people from a funeral is both a personal request and a strong public statement. At least in part, it’s a declaration to all who attend that these people hurt your wife deeply, and in this way, her pain would finally be acknowledged. This is what her wish is fundamentally about: a way for her to deal with the pain of the past.

Quite clearly, though, there’s a catch. If banning them from the funeral represents a final, public acknowledgment of her pain, the one person who needs that acknowledgment most won’t be alive to see it. So maybe it’s worth considering what might bring your wife even more peace than their absence at her funeral: the opportunity to be heard by them now. In my therapy practice, I’ve seen people with terminal illnesses spend the time they have left in different ways. Some people don’t change much—they hold on to their anger and resentments and die with them firmly in place. Others step far outside their comfort zone and grow tremendously in ways that feel immensely gratifying.

I don’t know which route your wife will choose, but here’s an option for her to consider. Instead of saying to her family members, essentially, “I’m angry with you and I get the last word!” (because by the time they learn about the funeral they missed, she’ll already be gone), she might say, “I’m angry with you, and I’d like to understand more about what happened between us before I die.”

She may learn that these relatives don’t realize how much they hurt her; or that they feel bad for having hurt her; or that they feel hurt by her, and there’s another side of the story she hadn’t been willing to consider before—her own role in the family drama. If that’s the case, there might be room for compassion on all sides, and while compassion won’t erase what happened in the past, it might pave the way for a greater understanding that allows a connection to find its way into their lives. And that small change can be potentially transformative, especially at this time in her life.

Of course, just because your wife does something differently doesn’t mean other people will. If they’re not willing to consider your wife’s point of view (remember, they don’t have to agree with it), if they place all the blame on her or are rude or insulting in these conversations, your wife can take a different tack. She can say she believes that the time to show respect is while a person is still alive, and if they can’t show her respect in life, it would be disingenuous of them to pretend to “pay respects” when she’s dead. For this reason, it would upset her to have them at her funeral, and if they genuinely want to pay respects, they can do so by respecting her preference for that day to go as she wishes.

They may say fine. Or they may still insist on coming, in which case she can ask them point-blank, “Why are you insisting on coming to a funeral for someone whose feelings you don’t care about and who doesn’t want you there?” Just hearing the stark truth in this way may encourage them to reconsider.

But here’s the thing: No matter what happens, your wife will have gotten to say her piece while she still can. Whether you have a private service or they attend her funeral, it won’t matter as much as the fact that she was proactive and forthright, spoke her truth directly to the people involved, and took control of what she had control over—how she wanted to live in a way that expressed her self-worth. Some people go their entire lives and never give themselves this opportunity. She doesn’t have to be one of them.

Complete Article HERE!

7 Touching Books to Help Kids Understand Death and Grief

Use these titles to help you better explain difficult topics such as death, illness, and grief to your child.

By Christie Burnett

This is the book list parents hope they will never need, but it’s an important one nonetheless. These books are valuable resources for talking to children about love, illness, death, and the stages of grief — all of which are abstract concepts that can be difficult for children, especially young ones, to grasp.

The seven titles on this list can also offer support and comfort to children experiencing the overwhelming emotions of losing someone in their own life.

1. In his signature simple style, Todd Parr explores the range of emotions and responses when we experience loss in The Goodbye Book. Parr guides young readers through the feelings most commonly felt when struggling with a goodbye, with the reassurance that with time things will get better, and a reminder that they are always loved.

2. Wherever You Are My Love Will Find You by Nancy Tillman is a beautiful, heartfelt exploration of the unconditional love that a parent has for a child, even when they cannot be together. While death is not explicitly mentioned, this book is a lovely resource for offering reassurance to children who have experienced the loss of a parent.

3. I’ll Always Love You by Hans Wilhelm explores the love between humans and their pets through the story shared by a young narrator about his dog, Elfie, and their life together. The book shows the boy caring for Elfie as she ages and his family’s grief when she dies of old age. The boy is sad that Elfie is gone but consoles himself that his dog always knew how much she was loved.

4. The Invisible String by Patrice Karst is a comforting story about two siblings who learn that everyone has an invisible string connecting them to everyone they love — anywhere, anytime — through separation, anger, and even death. “Even though you can’t see it with your eyes, you can feel it deep in your heart, and know that you are always connected to the ones you love.”

5. Nana Upstairs & Nana Downstairs by Tomie dePaola shares a tender story of love and care for an elderly relative through the eyes of a young boy named Tommy. We see Tommy helping his grandmother care for his 94-year-old great-grandmother, and the close bond he shares with both women. When his great-grandmother (and later his grandmother) dies, the story shows Tommy’s reactions to the deaths of these beloved family members.

6. Ida, Always by Caron Levis shares the beautiful story of two city zoo polar bears, Gus and Ida, and their feelings when Ida becomes sick with an illness that cannot be healed and later dies. It beautifully explores the turbulent range of emotions felt when a loved one becomes terminally ill, with a focus on making the most of the time we have left with sick loved ones. This is one of the most poignant books about love and loss I have read.

7. I Miss You: A First Look at Death by Pat Thomas explains what we know about death and grief in a simple, factual manner. It outlines reasons why people die, introduces what a funeral is, and explores the difficult feelings and emotions of saying goodbye and missing someone very much.

I am such a huge fan of using books to open or continue discussion with kids about difficult topics. Given how overwhelming and confusing the experience of death can be for a child, each of these thoughtfully composed books deserves a place on our home bookshelves.

Complete Article HERE!

BONUS: Longfellow And The Deep Hidden Woods. Longfellow, the bravest and noblest wiener dog in the world.
As our story begins, Longfellow is a puppy learning how to be a good friend to his human companions, old Henry and Henry’s nurse Miss O’weeza Tuffy. By the end, Longfellow has grown old himself, but he is still ready for one final adventure.
What happens in between is an unforgettable and heartwarming tale that throws a tender light on the difficult truths of loss and longing as well as on our greatest hopes.

Death Doesn’t Have to Be So Scary

Facing our own mortality becomes easier when we accept that it’s a natural part of life

By Bruce Horovitz

Since he watched his mother collapse and die, Richard Bridgman’s fear of death has left him emotionally paralyzed.

It was right around Thanksgiving—nearly 45 years ago—and Bridgman was sleeping overnight on his mom’s living room couch.

“In the middle of the night, she walked into the room and said, ‘Richard, I’m dying,’” recalls Bridgman, who tried to reassure his mom that she’d be OK. But his mother, who had a heart condition, was suffering a massive heart attack. “She looked at me and fell over on her head. I didn’t know what to do. She was dead.”

Death haunted much of Bridgman’s early years. His stepfather died when Bridgman was 15. His father, an alcoholic, died when Bridgman was 17. And Bridgman was 26 when his mom died before his eyes. Now, 72, and long retired from the bill collection business he once owned in the Springfield, Illinois, area, he has spent most of his adult years trying to cope with—if not overcome—his immense fear of death.

“Death became an obsession,” he said. “No matter where I went or what I did, death was always in the back of my mind.”

Most people prefer not to think about death, much less plan for it. In a tech-crazed world, where communication is broken into 140 characters and six-second sound bites, our connection with each other is dissected into so many bite-sized morsels that discussion of death would seem an unwieldy topic of conversation.

“Everybody has a fear of death, no matter what culture, religion, or country they come from,” said Kelvin Chin, author of “Overcoming the Fear of Death,” and founder of the Overcoming the Fear of Death Foundation and the nonprofit turningwithin.org. “Fear is simply an emotion caused by the anticipation of unhappiness.”

But wait. What if death isn’t actually unhappy? What if it simply—is? For Bridgman, whose fear of death was overwhelming, that simple question was a critical step in learning to deal with death. That question was posed to him by Chin, whom he discovered via a Google search. Several supportive phone consultations with Chin—combined with a simple meditation process that Chin teaches—have helped to keep Bridgman’s fears under control.

“I spent so much money on psychiatrists and psychotherapists—none of them did any good,” says Bridgman. But Chin steered Bridgman toward meditation. “Meditation is better than medicine,” Bridgman said.

Everyone must figure out their own way to handle the fear of death. One expert, who overcame her own fear through years of attending to the dying, says death is rarely the terrible thing that most folks fret about.

“Death is usually a peaceful process,” explains Donna Authers, a professional caregiver, motivational speaker, and author of the book “A Sacred Walk: Dispelling the Fear of Death and Caring for the Dying.”

“Very few people die screaming. They just go to sleep.”

But it took Authers years to learn the lesson that death need not be frightening. As a child, death haunted her. When she was 2 years old, her father was killed in World War II. Her mother, who had remarried, died on Authers’ fifth birthday. “Instead of a birthday party, I woke up to the worst day of my life,” she said. Her grandfather committed suicide when Authers was 15.

It was Authers’s grandmother—while dying from cancer—who taught her the most critical lesson in accepting death’s inevitability. Authers brought her grandmother home to tend to her during her final days, but her grandmother could sense her granddaughter’s terrible fear.

That’s when her grandmother took her by the hand and, unafraid, reminded Authers, “Death is part of life. You, too, will be where I am someday, and you can’t face death with fear,” she said. That changed everything. Seeing her grandmother bravely face death caused her own fears to dissolve.

“I was no longer afraid of death and dying,” Authers recalls.

Authers ultimately left her job as an IBM marketing executive to become a caregiver. Through the years, she has found that faith is the most important quality among those who face death without fear. “People who have faith in something don’t grieve like those who have no hope,” said Authers.

Increasingly, however, Chin has found that millennials—more than any other demographic—fear death the most.

“It’s the downside of social media,” said Chin. “The bombardment and speed of communication lead to an overload that can trigger a fear of death.”

Perhaps even the world of politics can play a role, suggests Sheldon Solomon, professor of psychology at Skidmore College and author of “The Worm at the Core: On the Role of Death in Life.”

In times of political upheaval—particularly when people are reminded of their mortality—the fear of death increases, even as they tend to be attracted to political figures who promise them more security, said Solomon, who has conducted numerous experiments on this issue.

“When people are reminded of their own mortality, in an effort to bolster faith in their own view of reality, they become more hostile to anyone who is different.”

Even then, says Solomon, perhaps nothing alleviates a dying person’s fear of death more than love.

A terminally ill grandmother he knew was distraught at the prospect of death. No doctor and no medicine could help her. Then, she received a short phone call from her granddaughter, begging her for her cupcake recipe. “No one can make them like you,” her granddaughter said.

“That call did more in five minutes than anything else could have,’” says Solomon. “It reminded the grandmother that she will live on in the memories of the people she loves. That was all she needed to know.”

Complete Article HERE!

Physician-Assisted Dying…

Even When Legal, Difficult to Achieve

By Roxanne Nelson, BSN, RN

When Maine passes a law allowing physician-assisted dying (PAD), it will be joining nine other jurisdictions in the United States.

By October, one in five Americans (22%) will have a law that allows terminally ill patients, most of whom have cancer, to choose an end to their life with medical help from a doctor.

However, the practicalities of actually doing so are formidable, and patients who choose this option find there are many obstacles in the way.

First is finding a doctor who will participate. Many doctors have moral objections to PAD, refuse to participate, and will not refer patients.

This sounds familiar to Charles Blanke, MD, professor of medicine at the Knight Cancer Institute at Oregon Health and Science University in Portland, who has been participating in PAD since it was legalized there in 1997.

Blanke says patients have told him that after being turned down by their physician, they also were not given a referral; instead, they were told by their doctor that “they don’t know anyone, and good luck finding someone.”

I believe this is patient abandonment.
Dr Charles Blanke

“I believe it is patient abandonment,” Blanke told Medscape Medical News. “For some patients, it takes them months to find me, so it’s no wonder many are too ill by then to proceed.”

In general, eligible patients say that PAD was not offered to them, Blanke said, but he argues that “it is legal and should be put on the table.”

He emphasized that physicians should never be pressured to participate in PAD, but they should refer patients. “We need to make it more patient friendly and more accessible.”

For years, Oregon was the only state that allowed the practice.

In recent years, however, other states have passed similar laws — Washington in 2008, Montana in 2009, Vermont in 2013, California in 2015, Colorado in 2016, Washington, D.C. in 2017, Hawaii in 2018, and New Jersey just a few weeks ago.

Lack of Training

That some doctors do not want to participate in PAD is understandable; many have moral objections to the whole idea, citing the Hippocratic oath to ‘do no harm.’

But there are signs of a shift toward more acceptance.

For instance, a 2018 Medscape ethics report found that 58% of doctors who responded to the survey said physician-assisted death should be available to the terminally ill, similar to 57% in 2016, and up from 54% in 2014 and 46% in 2010.

However, doctors who are willing to participate find it difficult to do so.

“The law makes no provision for medical training, there is no formal system, and I believe that is one of the major barriers and a shortcoming of the law in every state where it is legal,” said Lonny Shavelson, MD, a California physician based in the San Francisco area who specializes in aid in dying. He founded Bay Area End of Life Options in 2016.

“I agree that sometimes there is a moral objection, and there is sometimes institutional resistance, but most commonly it is lack of training,” he said.

Doctors, as a rule, like to do things they’ve been trained in.
Dr Lonny Shavelson

“Doctors, as a rule, like to do things they’ve been trained in and don’t like to do things they haven’t been trained in,” he added.

He noted that his practice has received more than 800 requests for medical aid in dying from different patients throughout California.

“Every patient who comes to us does so because they can’t find another doctor,” he said. “Everyone thinks it’s because of moral objections or that the patients live in rural communities, but it’s not the case for most of the patients.”

Shavelson told Medscape Medical News that he always calls the patient’s doctor, and most of them are not morally opposed to participating in PAD. “But what they tell me is that they’ve never been trained and that they don’t know anything about it. They don’t know what medications to use, or anything about the paperwork or protocol,” he said.

Barriers To Access

“The great news is that we have 22 years of data in Oregon, and the law is protecting patients,” says Kim Callinan, CEO of Compassion & Choices, the largest national advocacy group for aid in dying.

“But we also have robust data showing that the law is not meeting its intentions and that we have erected too many barriers for many to access it,” she told Medscape Medical News.

Callinan believes that improvements are needed to allow the original intention of the law to take place. “We want to keep the right safeguards in place,” she said. “But we are seeing such small numbers of people using it, and in many cases it’s because they can’t get access.”

Recent reports confirm that the number of patients who have chosen PAD — and who have completed the process — remains small.

For example, data from Oregon show that from 1997–2018, prescriptions have been written for 2217 people, and 1459 patients have died from ingesting the drugs.

In California during a single year (2017), 577 individuals received prescriptions and 374 people died after ingesting the medication.

Shavelson feels the actual demand for PAD is not reflected in the current statistics, and the numbers would probably be much higher if there was more access to physicians.

He argues that a more accurate survey would be to identify how many patients have requested PAD but could not find a physician to help them, he said. Shavelson believes that number would be significantly higher than what has been documented.

Institutional Barriers

In some cases, it is not the physician making the decision but the healthcare system.

A recent survey of 270 California hospitals, conducted 18 months after implementation of the state’s End of Life Option Act, found that 61% of hospitals had a policy forbidding physicians to participate (JAMA Intern Med. 2019;179:985-987).

“We found that of the 164 hospitals in California that opted out, 56% allowed physicians to refer patients to another provider and 29% of hospitals did not provide any guidance on this question,” said lead author Cindy Cain, PhD, assistant professor in the Department of Sociology at the University of Alabama at Birmingham.

“I support the idea that a health system can opt out,” says Peg Sandeen, PhD, MSW, executive director of the Death with Dignity National Center, a nonpartisan, nonprofit organization. “As much as I don’t like it, and think physicians should be free to practice, the health system has that right to do so,” she said.

However, not referring patients is an entirely different issue. “The outright act of refusing to refer a patient puts the physician into an ethical quandary,” she said. “Referral is part of how medicine is practiced, but it is up to the individual physician to make that determination.”

Waiting Times Present Another Barrier

The whole PAD process requires two oral requests with a waiting time of at least 15 days between them, and also a written request using the statutory form included in the state’s aid-in-dying law.

There are slight variations among states (eg, Washington, DC also requires two witnesses). Many states also require a second waiting period, in which the physician must wait 48 hours from the time of receiving the written request to write the prescription.

Callinan believes that the waiting periods, as well as the need for two doctors to confirm eligibility, are redundant in some cases. “The eligibility is that a patient has 6 months or less to live, and 2 doctors have to certify that,” she said.

“But if someone is already enrolled in hospice, as many are, it has already been determined that they meet the 6-month criteria and that the decision has been made to forgo treatment. In this case, they should only need one doctor to authorize it,” she argues.

A new law in Oregon may cut some of the waiting time, as it allows physicians to make exceptions to the waiting periods if the patient is likely to die before completing them.

“Oregon law has not evolved since it was written 20 years ago,” said Blanke. “This new bill will eliminate the waiting period for those who are imminently terminal. It won’t affect very many people, but it will help a few get quicker access.”

Shavelson praised the new Oregon law. “I think the 15-day waiting period is obscene because it’s not 15 days,” he said, explaining that it may be more like 3 or 4 months, as patients have to find a doctor and then may have to wait weeks for an appointment.

“The idea was that it was supposed to be a period of contemplation, but many patients have been contemplating since they got their diagnosis,” Shavelson pointed out. “They didn’t start thinking about it when they first made their request — they have been thinking about this for a long time.”

Patients in this waiting period may be dying or losing the mental and/or physical ability required for self-administration of the drugs, he explained. In his own clinical practice, about 30% of patients die during the 15-day waiting period, he estimates.

This is a similar proportion to that found in recent study from Kaiser Permanente Southern California, where one third of patients became too sick or died before the process was completed (JAMA Intern Med. 2018;178:417-421).

Accessing and Taking the Drugs

Even for patients who do manage to get through the bureaucracy, there are challenges in the practical steps of actually obtaining the drugs. A physician can only write the prescription and it is up to the patient to procure the drugs.

When states began to first legalize PAD, the drugs of choice were oral pentobarbital and secobarbital. However, as of 2015, both of these drugs have been largely unavailable, as previously reported by Medscape Medical News.

Through trial and error, a group of physicians eventually developed a drug regimen (DDMP2), which contains diazepam 1 g, digoxin 50 mg, morphine 15 g, and propranolol 2 g. It is more complicated than the barbiturates but has been found effective.

Shavelson explained that an updated version known as D-DMA (no propranolol and amitriptyline 8 g added), which is both faster and more reliable than all other protocols, is in the process of replacing DDMP2.

Both formulations are compounded by a pharmacist and available as a powder, which then must be mixed with 4 oz of apple juice and taken as a liquid/suspension.

Shavelson noted that physicians may not know where a patient can fill the prescription.

“It’s not something that can be filled at the local CVS or Walgreens,” he said. “A regular pharmacy doesn’t have the ingredients on hand, and for the DDMP2 combination, it has to be compounded.”

In California, two pharmacists currently fill about two thirds of the prescriptions. “Pharmacists need training as well,” Shavelson contends. “They are an integral part of this process.”

Even the last step in the whole process, the actual ingestion of the drugs, can be difficult for some patients.;

State law requires that the lethal dose be self-ingested via the digestive tract (orally or through an nasogastric (NG) or gastrostomy tube). The restriction that the drugs must be self-administered was to help ensure no one could harm a patient against his or her will.

However, many terminally ill patients are so sick they can’t physically mix the solutions, pick up and take the medicine, or swallow the drugs. Blanke estimates that around 10% of the patients he has evaluated have swallowing issues, and they fear that they will be unable to swallow the medications when they are ready to die.

To get around these practical difficulties, a proposed bill in Oregon sought to allow patients to self-administer intravenous drugs.

“There are many people who cannot swallow or administer through an NG tube, so just pushing the button on a pump syringe would allow them to take the medication,” said Blanke. “The IV could be put in right before they used it.”

Putting in an IV is easier than an NG tube, he explained, and much less invasive than a gastrostomy tube. “There’s really no difference between them, as far as putting medication in,” Blanke said. Both require some intervention and hold the same risk that someone else can administer the drugs.

Although the bill passed through the Oregon House of Representatives, it stalled in the Senate and has not moved forward. Some opponents of the bill feared that it would move Oregon closer to allowing euthanasia, while others cited the high cost of pump syringes.

Blanke believes that much of the opposition was really directed at the concept of assisted dying. “The arguments were with Death with Dignity,” he said. “Not the idea of making changes in the law or the use of an IV.”

The practical difficulties of PAD in the United States contrast with a much simpler process in Canada. Since 2016, Canada has legalized medical assistance in dying, which allows for both physician-assisted euthanasia and self-ingestion of a lethal dose. Patients have overwhelmingly selected physician-assisted euthanasia, where the lethal dose is administered intravenously by a clinician. According to Health Canada, of the nearly 7000 Canadians who have chosen to end their lives since the law went into effect, only six people have opted to self-administer drugs.

Physician Education and Training Needed

The biggest barrier — and the most imperative need — is physician education and training in PAD, argues Shavelson.

“Traditionally, teaching happens at large institutions, medical schools, universities, academics — but they won’t touch this,” said Shavelson. “They don’t want their reputation so-called ‘sullied,’ and are frightened that their reputation will take a hit. I don’t think that’s true, and I think people would feel that it’s a good thing to have medical centers more involved in this.”

Academia has fallen down on their responsibility, he contends. “This is a legal medical procedure and there is not one medical institution in my state [California] that is doing formal training on this. It’s not part of any conferences or any continuing medical education.”

As an example, the University of California, San Francisco, forbids palliative care residents and fellows from participating in aid-in-dying practices. The end result is that there are palliative care fellows coming out of training who have no experience in this area.

“Their patients will be asking about it, since palliative care doctors get asked about it more than any other specialty except for oncology,” said Shavelson. “So we will have palliative care and hospice doctors who have no training in it, and that’s absurd. This is part of the realm of what they are going to have to deal with in their practice, and institutions have forbidden it.”

However, next year the first conference for clinicians on medical aid in dying will be held in Berkeley, California, and will really delve into the nuts and bolts of practicalities, Shavelson explained. “The topic has come up at conferences, and there have been other gatherings to discuss it, but the focus has been on policy and ethics.”

This new meeting, called the National Clinicians Conference on Medical Aid in Dying, will provide an opportunity for clinicians to learn about bedside practices and share information.

“We need this clinical conference,” Shavelson added. “We are going to make education happen.”

Complete Article HERE!