Month: July 2022

Posted on

Dying without fear

— How psychedelics can ease the anxiety of terminal illness

A palliative care physician on keeping ‘1 foot in the medical world and 1 foot in the psycho-spiritual world’

By Anne Strainchamps

When Lou Lukas meets a new patient, she knows two things right away. First, that her patient has been diagnosed with a terminal illness; and second, that they’re terrified.

For Lukas, who teaches palliative medicine at the University of Nebraska Medical School, guiding patients through that fear and anxiety is just as important as treating their disease, because it’s what will determine how they live during the time they have left.

“What happens to most people is that they’re so frightened, they start to shut down,” Lukas says. “They become depressed and anxious. Meanwhile, we start scheduling them for medical treatments that may or may not work. But we haven’t questioned whether we can stop treatment because they’re too terrified to think about the possibility. So we get stuck in this cycle of clinging to life, even if it means I’m spending three days a week going through treatment and not spending time with my family. And in the end, nobody gets out of here alive, right?”

Lukas believes psychedelics have the potential to transform life after a terminal diagnosis by easing the grip of fear. Like many palliative medicine physicians, she pays close attention to the growing body of clinical trials for psychedelic-assisted therapy.

“It’s phenomenal,” she says. “Somewhere between 60 and 80 percent of people have profound experiences that dramatically change their life and their perception of their illness, which is remarkable because nothing else works like this.”

Wanting to know more about the future of psychedelics in end-of-life care, Anne Strainchamps of “To The Best Of Our Knowledge” got in touch with Lukas.

This conversation has been edited for clarity and length.

Anne Strainchamps: The FDA has not yet approved psilocybin for medical use. But clinical trials are underway in medical centers around the country. Tell me about yours.

Lou Lukas: I’m doing a trial of a psilocybin protocol for people who have pancreas cancer, which as you know is one of the most lethal of the solid organ cancers. Most people are diagnosed very far along and we can give them a couple of months usually, but not a whole lot longer than that. Some people might live a year, a year and a half. So you can imagine being told this.

AS: It’s a terrifying diagnosis.

LL: It is. And so people who are at our cancer center being treated for their pancreas cancer will be offered admission into this study, which will take them through six to eight hours of preparatory counseling, a day-long dosing session, and then several sessions of integration afterwards.

AS: What is it like to take psilocybin, for someone who has a terminal illness? How do they feel the day after? What’s different?

LL: It isn’t even the day after! When the dosing session is finished, when they come back into consensus reality, they just look at you like — “that was amazing.”

I witnessed one patient say, “All that anxiety I felt? It’s just stories. And I can get a different story. Yeah, I’ve got cancer, but I don’t need to be that worried about it.”

Underneath it all, people report a sense of being in the presence of love. You know, we put up a lot of defenses to get through our world, to keep ourselves physically and emotionally safe. And if we were able to let some of those defenses down, maybe we would have more access to love. And if you have that, then you can really accept a lot of things.

AS: What opens up for patients and their families, when they’re less frightened of the prospect of dying, when that anxiety eases?

LL: Then it becomes possible to think about going out with some joy and some curiosity and really full of life. Like: “What gifts do I need to leave to my family? How do I pass on some of my wisdom?”

We’ve all got a deadline in life.

There are some people who even talk about the ecstatic grief of knowing that this life we’re living is so precious and so sacred. But it’s only when there’s not that much of it left that you really feel the beauty and magnificence of it. So if you can help to convey that to people, if you can say, “Wow, look at this gift we’re sharing. Look at the intimacy we’re able to have now because I don’t have that much more time to hold your hand,” then you can really help people grow from generation to generation.

AS: You must be a very unusual palliative physician, because honestly, I think most would be more like, “Maybe we should add some more morphine.”

LL: I think given the opportunity, most palliative doctors would go into similar territory. I teach residents and fellows, and I tell them, “If you don’t talk to people about this, who will?” Because even if a patient has a trusted spiritual advisor, their pastor may not have any idea how sick they are. And if you don’t initiate those conversations about making meaning out of their life, they’re never going to connect with their pastor in a different way.

Our ability to reclaim some of the shamanic origins of medicine means learning how to bridge this gap. We need more physicians who feel called to edge-walking — one foot in the medical world and one foot in the psycho-spiritual world.

AS: I imagine some of these terminally ill patients must say, “If only I’d had this revelation 30, 40 years ago, I might have lived differently.” It does raise the question — why should people have to wait until they’re dying to have psychedelic therapy?

LL: Well, exactly. I’ve been thinking that it could be used like a sacrament, or rite of passage. Maybe when you come into adulthood, and then perhaps when you get married or have a child, or perhaps every decade, you just touch back down and remember that you’re connected to everything.

Almost like a ritual bath, a mikvah in Judaism — perhaps there’s this time when I take a psychedelic bath, when I think, “I’m going to wash myself in the universe. I’m going to immerse myself in the unconscious mind. I’m going to feel that expanse of consciousness and realize that I’m part of everything.”

And then come back and do the laundry and change the diapers.

Complete Article ↪HERE↩!

Posted on

Cancer treatment took my mojo. Hospice gave it back

The author with her grandchildren, Lily and Ella, at Sofra in Cambridge, June 2022.

By Grace Segran

Eating is one of my greatest pleasures, and it was the first thing to go. Everything I put in my mouth tasted metallic. My taste buds were distorted. The nausea wouldn’t go away with any medication, not even marijuana. I was in starvation mode.

When the cancer had returned after 23 years to finish its job, I thought the targeted hormonal therapy wouldn’t be as drastic as the chemotherapy I had the first time.But it was worse. The daily pill I was prescribed to take indefinitely — or until such time when it no longer worked — subverted my bodily functions.

My blood counts plunged to critical levels. I had to have two pints of blood monthly to bring up the hemoglobin to carry more oxygen through my body. My liver enzymes rocketed, indicating toxicity. By January this past year, I was in bed all day, getting up only to use the bathroom.

I felt like I’d lost my mojo. My spark. My life.

In March, a nurse practitioner visited my infusion room at the oncology facility where I was receiving intravenous rehydration and asked if I would consider transitioning to hospice. I had no clear picture of what hospice was, except that it’s where you go when you are about to die. But I trusted my medical team’s judgment.

The author with her daughter, Elizabeth, in Portsmouth, N.H., and baby Lily who accompanied Elizabeth to care for Grace when she first entered hospice. (Courtesy Grace Segran)
The author with her daughter, Elizabeth, in Portsmouth, N.H., and baby Lily who accompanied Elizabeth to care for Grace when she first entered hospice.

I went into hospice. And to my surprise, that’s how I got my mojo back.

I was taken off all cancer drugs and cared for at home by the hospice medical team. They also supported my daughter, Elizabeth, and taught her how to care for me.

Elizabeth came by with newborn baby Lily, every day, and took care of my personal needs. Then we would go out for a lunch or at teatime, or take a drive to nearby towns. The short wobbly walks to the car while holding on to her arm soon became more steady, and I could walk further as my muscles became reconditioned. I began to pick at my food rather than reject it outright. A month later, I no longer needed the electric cart in Target, or for Ben, my son-in-law, to lift me into the car seat or out of the dining chair.

About six weeks after stopping the drugs, I woke up and I wanted an egg salad on sourdough bread and iced oat milk latte. For lunch, I wondered if we should do the dim sum carts at Joyful Garden. Or rasam and thosai at Dosa n Curry. We should definitely stop at Sofra on the way back for lemonade and tahini shortbread. The nausea and aversion for food was gone. I was delighted to be eating again and entered into it with abandon, especially in the company of family and good friends.

The Segran women -- from left, Elizabeth, Grace, Lily and Ella -- at a church park party, June 2022. (Courtesy Grace Segran)
The Segran women — from left, Elizabeth, Grace, Lily and Ella — at a church park party, June 2022.

With all the lunches I was booking with friends whom I’d not seen for months, I called Laura, my hairdresser, for an appointment. My hair had grown unruly now that the drug wasn’t curtailing its growth.

“You remember, right? Not too short and lots of texture,” I told Laura. When I got home, I dug deep in the closet for summer dresses and shoes. I had places to go!

I took baby steps towards traveling, another love of mine. Over a month, Elizabeth, Lily, and I took overnight trips to Newport, Rhode Island, Portsmouth, New Hampshire, and Portland, Maine, hoping to veer towards the airport after that and venture on to Chicago and New Orleans.

I started writing again. I’d scoured the internet but couldn’t find anything on first-person accounts about dying and hospice (always written by caregivers), so I wanted to write about that. And here I am.

My life is not perfect. I don’t walk nine miles a day as I did pre-cancer. I limp badly, and it’s a good day if I can make a quarter mile. I’m in bed for days after an overnight getaway. I don’t feel like seeing anyone some days. But I have the support of the beloved hospice team who comes to my home to help with my disabilities and take care of infections and pain, enabling me to live the life I want for as long as I can.

The window will close at some point, and I will go into decline as the cancer takes over. But I’m grateful for this interregnum. Hospice care has given me back my life, for now. I don’t know when the window will close — none of us do, really — but I’m cherishing every moment while it lasts.

Complete Article ↪HERE↩!

Posted on

What Comes After Death?

— Clinicians can help young patients integrate existing belief systems to process grief

By Rebecca Morse, PhD, MA

I once attended a funeral during which the guests were invited to take a flower from atop a young mother’s casket as a memento. A little boy, her son, was being held by his father. He had been remarkably quiet throughout the funeral and interment process up to this point. Then, I began watching him, watch them. He was looking from the line of people to the casket, to his father, to the line of people, to the casket, to his father. He was starting to fidget. And suddenly, amid the silence, he asked his father “Daddy! Why are they taking mommy’s flowers? They are the lastest she’ll ever have?!”

The purpose of this story? To emphasize that this little boy, with only a handful of years on this earth, who couldn’t possibly have a full, contextual understanding of death, on some minute yet significant level got it. His mother would never get more flowers. At least, none she would be able to appreciate.

Last month, I wrote about how medical professionals should always provide honest and fact-based information when talking to pediatric patients about dying. Yet the question remains: What comes after death?

Children may not ask questions indicative of an existential crisis. They often ask very practical questions: What happens after we die? What will happen to me after I die? Is there a heaven? We must educate those who work with and around children: kids live in a world where death exists and we don’t help them if we don’t tell them, help scaffold their understanding, and better their ability to process difficult emotions.

Having established that children understand more than we recognize, how do we, as health professionals, discuss what comes next? First, the pragmatic recommendations: When discussing anything with a child, it’s best to ensure that the parents or legal guardians know what you will be sharing and why. Second, it’s critical to be mindful of culture. Depending on the family’s background there may be constraints or considerations integral to their belief system. And although the goal is transparency and honesty, to establish a trusting relationship with the child, it doesn’t help if the healthcare professionals and guardians are at odds with one another.

It can also be helpful to ask the child what they know already. What have they learned from their family? What does the child think? Children are remarkable observers. They “science” the world around them; correlation does imply causation to them. So, knowing and being able to understand their existing framework or cognitive schema(s) will help guide you in what to say. Even a child as young as 3 or 4 years old can make correlational connections, as did the young child in my story.

In my thanatology courses on children and death, I often require students to watch the movie “Ponette.” It’s a perfect example of what not to do. As each adult and older child gives Ponette different responses after her mother dies, she now must navigate conflicting narratives. And none of it makes sense to Ponette, who is engaging in a very healthy grief response: seeking proximity to her deceased mother and wanting to find ways to communicate with her spirit.

When discussing the afterlife and what comes next with kids, if you know the family’s belief or faith you can work with, not against, what the child has already internalized as their working model for their assumptive world. It’s not our place to undermine the child’s trust in their parents or guardians, or to question what the family has taught the child.

So, what might this look like in a clinical setting?

Step 1: Be honest about what you don’t know first-hand. Unless you are Frankenstein’s monster, it’s safe to assume you haven’t been dead yourself or returned from the grave. It’s okay to tell a child that you don’t know. In terms of sharing what you believe, there may be limitations on what you may or may not share based on professional ethical or legal guidelines, in addition to the need to respect the legal and moral rights of the parents.

Step 2: Ask. This is a good opportunity to ask the child what they believe. A child doesn’t need us to have all the answers. Children need a secure attachment base, and to know they can trust the adults in their world. Regardless of the child’s faith of origin (meaning their caregiver’s or cultural belief system that they are still internalizing), they need consistency in messaging, and their caregivers serve as a primary attachment figure. This can be challenging when the child or family has a different belief system than your own. This is where spiritual cultural humility is imperative; never undermine faith just because you don’t share it (e.g., thanatologists dealing with difference). By finding out what the client feels is salient, we can help them process their emotions around it.

Step 3: Help the child learn to label their emotions. Research has demonstrated that when parents have a more extensive vocabulary for emotion-related words, their children are more advanced in both their social and emotional development. Lev Vygotsky, an early developmentalist, was particularly interested in how we can structure learning in children; he posited that a child’s ability to learn and reach their potential is not limited as much by their own abilities, as it is by the ability of the “teacher” or more expert peer to “scaffold” learning. When children can have their emotion-related expressive language scaffolded (meaning built up or supported by a more experienced person), they show better emotional self-regulation. One final tip: children process through play, so don’t be surprised if they engage in imaginary playacting or games to practice what they are learning and to develop self-regulation. It’s perfectly normal if one moment they are crying or distressed and then minutes later they are laughing and silly. Children may also practice social scripts around loss through make-believe interactions with imaginary friends — this is healthy and adaptive as they are learning to adapt to their new world.

Talking with children about death is one of the most challenging things grown-ups must do. I know many parents who would much rather discuss sex than death and dying. Oftentimes, it may fall on healthcare professionals to provide support. Similar to discussing dying with a child, when discussing what comes after death it’s important to keep in mind the child’s cognitive ability, offer honesty titrated in language they can understand, and remember that grief may manifest itself in different ways such as upset tummies, headaches, irritability, and changes in eating and sleeping patterns.

Moral of the story? The best thing we can do to help children deal with death is to lean into those difficult discussions, work within their existing understanding, and allow them to process at their own pace.

Complete Article ↪HERE↩!

Posted on

What to do when someone receives a terminal diagnosis

This step-by-step guide has advice for what you can do when you or someone close to you has been given a terminal diagnosis, and the ways you can access hospice care.

How you might feel

Hearing that an illness cannot be cured can be a shock, and it can be frightening.

It is common to feel lots of different emotions, including numbness, shock, anger, sadness and even denial.

Whether you have a terminal diagnosis or are caring for the person who has, you don’t have to go through this alone as there are people and services available to support you.

What to do next

After receiving a terminal diagnosis, there are two important things you should do next:

  • Make an appointment with your GP to find out what support is available. If you are the person with the diagnosis, consider whether you want to take a family member or close friend with you, or would rather go alone. You might be feeling lots of emotions which can make it hard to take information in.
  • Make contact with your local hospice to find out what support they can offer. Their staff are specialists in end of life care and will help you understand what you are facing, and suggest appropriate care. Hospice care is free for patients, their carers and family members.

If someone living at home receives a terminal diagnosis 

If you think hospice care could be helpful for yourself or the person you are caring for at home, contact a GP or district nurse to discuss your situation and ask if they can refer you to the local hospice.

Some hospices can take self-referrals, so it might be worth contacting them directly to ask about this.

Once you’ve spoken to a doctor or the hospice, the following things will usually happen:
The doctor will arrange a health needs assessment to make sure the right access to care, support and equipment is provided.

Equipment to make things more comfortable and safe might be necessary. There are supplies of equipment such as adjustable beds, commodes or incontinence aids that can be made available – ask the GP or nurses about this.

Talk to an occupational therapist about what equipment you might need. A physiotherapist or occupational therapist can also help with things like breathing difficulties.

If someone in hospital receives a terminal diagnosis

Many hospitals have access to a palliative care team who can provide advice and support.

  • Ask your nurse or doctor if you can be referred to the hospital’s palliative care team
  • The palliative care team can help with a referral to the local hospice so that you can get support from the hospice when you leave the hospital.

What do I do now?

Hearing the news that someone you love, or a friend of yours, has been diagnosed with a life-limiting condition will be a real shock.

This video is intended to help you support them, and find out more about what will happen next. It’s important to know that you will not be alone. There is help out there not just to support and care for your loved one, but for you as well.

Complete Article ↪HERE↩!

Posted on

3 Stress-Melting Benefits of Box Breathing

(And How to Try It on Your Own)

Try this basic, ancient breathing technique to slow down, reset, and lower stress.

By Lacey Muinos

Focusing on your breath during heightened states of alertness can be a powerful tool for reducing stress, calming anxiety, and cultivating mindfulness. There are many different breathing exercises to keep in your toolbox for when you need them, and one basic breathing technique known as box breathing is gaining mainstream momentum as people discover how straightforward it is and how helpful it can be in everyday life.

While it may seem new to you, the practice of slowing down your breathing with intention has ancient Ayurvedic roots. Box breathing has been used for thousands of years and in practices such as yoga and meditation to calm an anxious mind, engage the rest-and-digest state (the parasympathetic nervous system), and stay grounded in the present moment. It’s even used by Navy SEALs for keeping cool and laser-focused in high-stress, high-pressure situations.

But you don’t need to be a yogi, Zen master, or SEAL to incorporate breathwork like box breathing into your own routine. This uncomplicated, four-step breathing technique is easier than you might think and can be done anywhere and at any time—settle your nerves before a work presentation; slow your breathing while trying to fall asleep; or take a literal breather when you get angry or agitated. We spoke to breathwork pros to find out why this breathing method has resurfaced as an effective and science-backed solution to stress and anxiety.

What is box breathing?

Box breathing goes by many names: four-square breathing, square breathing, four-count breathing, Sama Vritti Pranayama, tactical breathing, and yogic breathing.

“Box breathing is a four-step breathing technique during which you breathe in, hold, breathe out, and then hold for the same number of counts throughout,” says Sophie Belle, a breathwork facilitator and founder of online breathwork studio Mind You Club. So each step of the breath cycle—inhale, hold, exhale, hold—makes up one side of the box. 

Practicing box breathing involves slowing the breath by following a specific pattern:

  1. Inhale for four counts
  2. Hold your breath for four counts
  3. Exhale for four counts
  4. Pause for four counts

(You won’t always have a stopwatch on hand, so “counts” can refer to approximate seconds here.)

Not only does the box breathing physically alter your breath to become slower and deeper, but it also forces your mind to become focused on and conscious of your breath. This can be especially powerful during times of tension or distress, but also beneficial anytime, anywhere as a daily habit. “When we’re consciously breathing, we have the ability to regulate our body and take it from an overstimulated state of stress and nervousness to actual calm,” says breathwork specialist Ali Levine. “Box breathing is a way for you to consciously monitor your breath and pay attention to your rhythm—it’s a reset to your breath.”

The Benefits of Box Breathing

1 Reduces the body’s stress response.

Studies have shown that diaphragmatic breathing (in other words, taking big, deep, gentle breaths that fill your belly) counteracts both the physical and mental elements of stress. Deep breathing has even been shown to reduce the physiological consequences of stress in adults. “Box breathing is a simple, yet powerful way to take yourself from fight-or-flight mode back to a normal rhythm,” Levine says.

When you’re stressed or tense, one of the ways your system reacts is for your breathing to become faster and more shallow (this is all part of a normal, natural stress response). This kind of rapid breathing, known as hyperventilation—essentially where you exhale more than you inhale—lowers carbon dioxide levels in the body and makes you feel lightheaded. Slowing down your breathing helps to control hyperventilation. It restores the rhythm of your breathing, correcting those fast, shallow breaths associated with stress and anxiety.

During states of stress, another thing that happens is that your heart rate increases. This is when your body enters fight-or-flight mode, releasing adrenaline and cortisol, which cause your heart rate to speed up and blood pressure to rise. Slow breathing has been shown to have a profound effect on cardiovascular function. Box breathing activates the parasympathetic nervous system, which is the opposite of fight-or-flight mode, helping the body return to a rested state.

2 Halts unhelpful thought loops.

Box breathing comes with the enormous benefit of calming the mind. Stress and anxiety often come with a cluttered headspace and racing thoughts. “Box breathing focuses your mind, so it’s incredibly good for stress, rebalancing, and [attention],” Belle says. When your thoughts won’t stop swirling, it can feel impossible to quiet them. Using a mindfulness-based breathing exercise like box breathing forces you to bring your attention to something other than upsetting, overwhelming, or just plain obnoxious thoughts. It gives your brain something else to fixate on (what a relief!). And one of the best long-term side effects of doing something like box breathing is that the more you do it, the better your brain will become at redirecting attention away from unhelpful mental chatter. It’s actually a skill that gets sharper with practice.

3 Helps you focus on the present moment.

Anxiety typically involves worrying about the future or harping on the past. Box breathing is heavily associated with meditation and mindfulness, two of the best techniques for anchoring yourself in the current moment.

“The focus on the breath enables you to become very present,” Belle says. “This helps you to practice non-attachment to unhelpful thought patterns, which over time can lead to more positive automatic stress responses.”

How to Try Box Breathing on Your Own

This breathwork practice is rewarding and grounding—and it’s easy to get started. You don’t need any special equipment or even a secluded place, just your mind and your breath. Give it a try when you feel stressed or on a regular basis to encourage relaxation.

How to do it:

  1. Ground yourself (e.g. sit in a chair, sit on the floor, stand in a comfortable position). Sit or stand up straight (but not rigid) and relax your shoulders.
  2. Bring focus to your breath.
  3. Take a slow, deep breath in as you count to four, making the inhale last for all four counts. Feel your belly expand with air.
  4. Hold your breath for four counts. Try to think only about counting to four.
  5. Exhale through your mouth: Breathe out steadily for four counts, making the exhale last for all four counts. 
  6. Hold again for four more counts.
  7. Repeat this cycle as needed.

If you’ve never engaged in breathing techniques before, it will likely feel strange at first—that’s completely normal. “Don’t be disheartened if it feels difficult,” Belle says. “Just reset and reduce the counts or try again at another time when you have a bit more space to focus on the breath.” Instead of attempting to carve out time for box breathing, Belle recommends stacking this habit onto another daily activity that doesn’t require much effort, like waiting for the shower water to get hot or the kettle to boil.

Complete Article ↪HERE↩!

Posted on

How Death Gives Meaning to Our Lives

In her new book, Alive Until You’re Dead, Susan Moon helps us confront our fears around death and shows us why we should be grateful for our own mortality.

Susan Moon’s new book, Alive Until You’re Dead, is out now with Shambhala Publications.

by Alison Spiegel

The subtitle of writer and lay Zen teacher Susan Moon’s latest book may be “Notes on the Home Stretch,” but the wisdom on aging, and more to the point, death, in Alive Until You’re Dead is important for readers of any age. Weaving in personal stories, many about confronting the deaths of close friends, Moon turns her lived experience into tributes and guidance for facing mortality. She also brings a lightness to the subject that so many people fear above all else, but that Moon says actually brings meaning to our lives. Tricycle caught up with Moon to hear more about the intention and writing process of the book, and for further advice on facing death at any stage of life.

Why did you want to write Alive Until You’re Dead: Notes on the Home Stretch? I wanted to write about my ongoing concern with what it means to be mortal and the idea that our condition of mortality and impermanence, which we are constantly fighting against, actually gives us life. Death is very hard and painful but it’s also what gives meaning to our lives. I really wanted to talk about how we actually can be grateful for our mortality, and that the fact that we’re going to die gives us the opportunity to make our life meaningful.

You wrote this book during the pandemic. How did that unique time impact your work? I think of it as my pandemic book, in a sense, because the pandemic provided me time and space and simplicity of life to write. I’ve been on writing retreats, I’ve been to writers’ residencies, and weirdly, this horrible tragedy was also kind of a perfect writer’s retreat for me. But at the same time, I think all the tragedy and fear added to the relevance of my subject in a way. I have to add that I’m grateful to my sister and brother-in-law who live with me and who supported and encouraged me as this was going on.

Early in the book, in a story about a friend of yours who died in the hospital after suffering a stroke, you say that “the Grim Reaper metaphor is all wrong.” Can you explain what you mean by that? Death is not one separate thing that’s coming after us. In Buddhism, birth and death are kind of conceived as a hyphenated thing. Life is the realm of birth and death, and there’s a sense that before we were born into this body, and after we leave this body, there’s this other realm of the absolute, which is a mystery to us. People often worry about what will happen to them after they die, but we never think about where we came from before we were born. We don’t even think about that as a parallel thing. 

Though you don’t shy away from the hard parts of aging, you also describe the upsides. Referencing a dharma brother who gave a memorable talk at Berkeley Zen Center, you write, “In his old age, it came naturally to him to put himself aside and not think about what he needed all the time.” How have you experienced this? It’s about letting go of self clinging. I’m not building a life anymore so there’s some freedom there to attend to the needs of others, like my own children and grandchildren. How can I just be present with loved ones? I love the example in that essay when the man said when he was playing with his grandson, and they would build a tower, his grandson would knock it over again and again, and they would just laugh and build it again. You don’t have to worry about building a tower that stays up.

But letting go of self-clinging is appropriate for anyone at any stage of life. If you’re grasping for your own happiness at the expense of others, that’s not going to bring you happiness. I really feel that the path to joy is to let go of self-clinging in whatever way you can, and I think Buddhist practice has been helpful for me in that. But there’s many other routes, like being in community and continually remembering that we’re all in this together, we’re all interconnected, and your happiness isn’t separate from anybody else’s happiness.

“The fact that we’re going to die gives us the opportunity to make our life meaningful.”

Throughout the book you reference beautiful moments with your grandchildren, who you connected with frequently over Zoom during the pandemic. These stories speak for themselves, but you also talk about the term “grandmother mind.” Can you explain what that means? It’s connected to letting go of clinging. Dogen uses the phrase when he tells a young male monk, who is different from a grandmother in every possible respect, that he won’t be able to have a mind of compassion and be a true Buddist practitioner unless he can develop “grandmother mind.” Dogen is speaking, I believe, about what he calls “the mind of great compassion.” So it’s that spirit, but I think as I’m using it, it’s also about a certain kind of love. If you’re not one of the grandparents who are raising your own grandchildren—an amazing thing that a lot of people are doing—and you’re able to just be a grandparent and not be responsible for all the hard parts, the kind of love that you can have for your grandchildren is unencumbered, unconditional. I see “grandmother mind” as an obligation to apply that feeling to all children. All of us need to have “grandmother mind” about children.

On the subject of death, you say, “When I deliberately consider my own death, I feel more alive,” and you offer some contemplations on death. Could you describe one of them? One that pops into my head—it’s not harder or easier, or more important or anything—is walking in cemeteries. To walk in a cemetery, and to actually look at the gravestones, read the names and think of all these people who have died, to look at the dates and think about the generations, gives me a sense of how there’s a flow of time and generations. For some reason I’m comforted by the thought that I am a leaf in the generations of leaves that keep turning over. I’m part of the turning over. There are many people who were born and died before me and hopefully there will be many who are born and die after me. I’m just one person and I’m not all that important. It’s just amazingly fortunate that I should be walking there, alive and looking at some bird singing in a tree, and life is going on. It’s the same feeling I get from looking at the stars in the sky and thinking of the vastness of the universe, or by reading about physics or cosmology. It’s the idea that there’s this vastness of time and that my life is just a little blink, and I don’t even know what part of the great cosmic consciousness my life is, but it’s a miracle that I have this consciousness in this one little tiny person on the planet. Here I am, and what a great miracle.

Do you think it’s wise or essential to prepare for death? What about preparing for the death of loved ones? When I think about it as a practice myself I resist it because it feels unnecessarily harsh. But should we prepare for the greatest moments of suffering? What I realized when I was writing this book—and I realized it before when thinking about my own loved ones, and particularly my children—is that accepting my own death is a hard job, but accepting that the people I love will die is even harder. Having people leave you is terrible, and then the worst possible fear of all would be to have your children die. I can’t imagine anything worse. I remember when I first became a mother, all of a sudden when I read the newspaper and the war in Vietnam was going on, I would see these pictures of children in the war and the whole thing took on a different meaning. It was much more personal to me, and it became unbearable. It’s the same even now, when I think about the war in Ukraine and the children there.

I think preparing for the death of loved ones is something that one can do. You can prepare for the death of somebody who is old, where the death won’t be such a tragedy. You can just try to appreciate the person and have so much gratitude for this person being in your life. You can try to help them see that their life has been full and rich and help them find some peace. And for children, take as much joy as possible in what’s going on. Don’t let fear rob you of your joy.

I also think that we can trust that sometimes people who are dying find a way to accept what’s happening. Maybe they’re in pain, maybe they want to be released, but it’s important to know that while your pain and your loss is so real and acute, you don’t have to take on their suffering, because you don’t really know what they’re suffering is.

A friend of mine, who I loved very dearly, died of cancer in 2018. I miss her terribly. She was a Buddhist, and she knew she was dying for quite a long time. At first she was still functioning well and then she needed to care, and I was one of the people who took turns to help her at home, making meals for her and things like that. Then she was in some pain and I said, “How do you do this? How do you tolerate this?” She said, “I just say to myself, ‘This is how it is right now.’” This is how it is right now. That became a kind of mantra for me that I bring into a lot of other situations in my life. It’s about being present in the moment, accepting things as they are and then moving from there. It’s not resigning yourself, but being present with things before you go on to the next thing. It’s knowing, thanks to impermanence, that things won’t stay this way, for better or worse. I think that is very helpful.

Complete Article ↪HERE↩!

Posted on

Medical aid in dying is still called ‘assisted suicide.’

An anthropologist explains the problem with that

By Anita Hannig

Several states around the U.S. are currently considering whether to legalize medical aid in dying for terminally ill patients. More than 20% of Americans already live in a state with access to a medically assisted death. Despite this rapidly changing legal climate, the language for describing this new way to die remains surprisingly antiquated.

The term that continues to dominate media coverage on the issue is “assisted suicide.” The American Medical Association uses the term “physician-assisted suicide.”

A quick look at Google Trends reveals that nine times as many people search for “assisted suicide” as “assisted dying.”

As a cultural anthropologist, I know that how we name something determines how we think about it. Until just recently, the primary term in the English language for the purposeful, voluntary death of oneself was “suicide.” Besides martyrdom or sacrifice, there was no other way to refer to an intentional self-death.

But times have changed. For the past 25 years, since Oregon enacted the country’s first assisted dying law, a medically assisted death has occupied a new legal and moral category. An assisted death is a medical response to the devastating reality of terminal illness.

Equating assisted dying with suicide isn’t only antiquated or misleading – it’s actually harmful. I have spent five years shadowing patients, families and physicians involved with assisted dying in America, and I saw how damaging this conflation can be. In my new book, “The Day I Die: The Untold Story of Assisted Dying in America,” I explore the complexities and constraints of the choices that people who pursue an assisted death face.

A loaded term

Until well into the 19th century, suicide was viewed as a crime in the United States, punishable with confiscation of the deceased’s property and denial of a Christian burial. Although suicide – but not its assistance – has been decriminalized today, it remains heavily stigmatized. As philosopher Ian Hacking writes, “News of a suicide among us has an immediate response: horror.” Calling assisted dying “suicide” taps into the social taboos and moral outrage that surround the act of taking one’s life.

That stigma can lead to very sick patients’ hiding their desire to pursue an assisted death from loved ones for fear of being judged for “suiciding” – leaving patients without critical support. It also poses a problem for terminally ill patients who have a strong wish to be released from their suffering but whose religion considers committing “suicide” a sin. One devout homeless patient from Portland with end-stage renal failure spent his last waking moments before he drank the lethal medication agonizing about whether God would forgive him for ending his life.

As I found during my research, the conflation of assisted dying with suicide sometimes causes families to feel isolated in the bereavement process. Afraid of being shamed for “abetting” their loved one’s “suicide,” some have had to mask their grief.

Valerie, whose elderly mother used Oregon’s assisted dying law in 2018, told her supervisor at work about her mother’s chosen death. He emitted a “hushed groan,” offering no condolences for her loss. “After that encounter, I only revealed the details to trusted friends and family,” Valerie told me. “It added a layer of sadness to expend energy trying to figure out what someone’s reaction might be.”

Bereavement experts call this type of mourning “disenfranchised grief” – hidden grief that is not fully acknowledged or even allowed by society because of the way someone died, such as from a drug overdose or in utero.

A medical procedure

From their inception, assisted-dying laws in America were designed to mobilize the tools of medicine to ease suffering at the end of someone’s life. These laws draw a clear line between assisted dying and a suicidal act. The nation’s first assisted-dying statute, Oregon’s 1997 Death with Dignity Act, specifies that “Actions taken in accordance with [the Act] shall not, for any purpose, constitute suicide, assisted suicide, mercy killing or homicide, under the law.”

As Roger Kligler, a physician and cancer patient who is suing the commonwealth of Massachusetts for his right to die, put it, “Calling it suicide means that we’re not talking about end-of-life issues.”

The participation of medicine and a patient’s social network, write psychiatrists John Michael Bostwick and Lewis Cohen, are what differentiate assisted dying from suicide. An assisted death is collaborative and sanctioned by a patient’s support system – not unilateral and covert. “When they acquiesce to requests to facilitate dying, [physicians] are not abetting suicide or committing homicide,” Bostwick and Cohen write. “The distinction between clinical suicide and other types of end-of-life decisions demands a new formulation.”

Key differences

Terminally ill patients who seek an assisted death aren’t suicidal. Absent a terminal prognosis, they have no independent desire to end their life. In fact, prescribing physicians must uphold the distinction between assisted dying and suicide in their clinical work by screening for mental illness, such as depression (which is clinically associated with suicidal thoughts). A patient who shows any signs of mental impairment must undergo further scrutiny by a mental health expert.

Patients who pursue medical aid in dying are no longer looking at an open-ended life span either. To qualify for an assisted death in states with these laws they must already be on the verge of dying – that is, within six months of the end of their life. These patients don’t face a meaningful decision between living and dying, but between one kind of death and another.

As more states are inching closer to legalizing assisted dying, it’s time that we revise and refine our cultural lexicon around this emergent end-of-life practice. A medically assisted death definitively warrants a linguistic and conceptual category of its own.

Complete Article ↪HERE↩!