End-of-life conversations may be helpful to patients and families

By Lola Butcher

In the mid-1990s, psychiatrist Harvey Max Chochinov and his colleagues were researching depression and anxiety in patients approaching the end of their lives when they became curious about this question: Why do some dying people wish for death and contemplate suicide while others, burdened with similar symptoms, experience serenity and a will to live right up to their last days?

In the next decade, Chochinov’s team at the University of Manitoba in Canada developed a therapy designed to reduce depression, desire for death and suicidal thoughts at the end of life. Dignity therapy, as it is called, involves a guided conversation with a trained therapist to allow dying people to speak about the things that matter most to them.

“It is a conversation that we invite people into, to allow them to say the things they would want said before they are no longer in a position to be able to say it themselves,” Chochinov says.

Dignity therapy is little known to the general public but it has captivated end-of-life researchers around the world. Studies have yet to pin down what benefits it confers, but research keeps confirming one thing: Patients, families and clinicians love it.

These end-of-life conversations are important, says Deborah Carr, a sociologist at Boston University who studies well-being in the last stages of life. A key need of people who know they are dying is tending to relationships with people who matter to them. This includes “being able to communicate their wishes to family and ensuring that their loved ones are able to say goodbye without regret,” she says.

And the closer we get to death, the more we need to understand what our lives have amounted to, says Kenneth J. Doka, senior vice president for grief programs for Hospice Foundation of America. People “want to look back and say, ‘My life counted. My life mattered. My life had value, had some importance,’ in whatever way they define it,” Doka says. “I think dignity therapy speaks to that need to find meaning in life and does it in a very structured and very successful way.”

Chochinov’s search to understand why some people feel despair at the end of life while others do not led him to countries such as Belgium, the Netherlands and Luxembourg, where euthanasia and assisted suicide have long been legal. There he learned that the most common reason people gave for seeking assisted suicide was loss of dignity.

To learn more, Chochinov and his colleagues asked 213 terminal cancer patients to rate their sense of dignity on a seven-point scale. Nearly half reported a loss of dignity to some degree, and 7.5 percent identified loss of dignity as a significant concern. Patients in this latter group were much more likely to report pain, desire for death, anxiety and depression than those who reported little or no loss of dignity.

Dignity at the end of life means different things to different people, but in interviews with 50 terminally ill patients, Chochinov and colleagues found that one of the most common answers related to a dying person’s perception of how they were seen by others.

“Dignity is about being deserving of honor, respect or esteem,” Chochinov says. “Patients who felt a lost sense of dignity oftentimes perceived that others didn’t see them as somebody who had a continued sense of worth.”

Dignity therapy is tailored to enhance this sense of worth. In a session, a therapist — typically a clinician or social worker — carefully leads the patient through nine questions that help a person express how their life has been worthwhile.

“It’s not like a recipe, that you can just read out these nine questions and then call it dignity therapy,” Chochinov says. “We train therapists so that we can help them guide people through a very organic kind of conversation.”

The session typically lasts around an hour. About half is spent gathering biographical highlights, and the other half focuses on what Chochinov calls the “more wisdom-laden” thoughts the patient wants to share. A few days later, the patient receives an edited draft for review. “There’s an ethos of immediacy — your words matter, you matter,” he says. “They can edit it and they can sign off on it to say, ‘That is what I want as part of my legacy.’ ”

Chochinov estimates that nearly 100 peer-reviewed research papers, and at least four in-depth analyses — “systematic reviews” of the accumulated science — have been published so far on dignity therapy, and more studies are ongoing. The largest yet, of 560 patients treated at six sites across the country, is now being conducted by Diana Wilkie, a nursing professor at the University of Florida, and her colleagues.

Wilkie also helped conduct the first systematic review, published in 2015, which came up with a conundrum. When all studies were viewed together, the evidence that dignity therapy reduced the desire for death was lacking.

“The findings have been mixed,” she says. “In the smaller studies, you see benefit sometimes and sometimes not; in the larger studies, not.”

The most definitive study — Chochinov’s original clinical trial, of 326 adults in Canada, the United States and Australia who were expected to live six months or less — found that the therapy did not mitigate “outright distress such as depression, desire for death or suicidality,” although it provided other benefits, including an improved quality of life and a change in how the patients’ family regarded and appreciated them. A few years later, Miguel Julião, a Lisbon physician, and his colleagues conducted a much smaller trial in Portugal in which dignity therapy did reduce demoralization, desire for death, depression and anxiety.

Julião thinks the different outcomes reflect differences in the patient groups: His study focused on people experiencing high levels of distress, while Chochinov’s did not.

Positive and negative results also may depend upon how studies measure “success.” Scott Irwin, a psychiatrist at Cedars-Sinai Cancer in Los Angeles, worked at a San Diego hospice that introduced dignity therapy in 2009.

“It was absolutely worthwhile — no question,” Irwin says. “Not only did the patients love it, but the nurses loved it and got to know their patients better. It was sort of a transformative experience for patients and the care team.”

In Portugal, family members of dying individuals have prompted Julião to develop new uses for the therapy. He and Chochinov first adapted the interview to be appropriate for adolescents. More recently, they created a posthumous therapy for surviving friends and family members. In a study of this survivor interview protocol, “we have wonderful, wonderful comments from people saying, ‘It’s like I’m here with him or with her,’ ” Julião says.

For all its appeal, few patients receive dignity therapy. Though the tool is well-known among clinicians and social workers who specialize in caring for seriously ill patients, it is not routinely available in the United States, Doka says.

A primary barrier is time. The therapy is designed to last just one hour, but in Irwin’s experience at the hospice, patients were often too tired or pain-ridden to get through the entire interview in one session. On average, a therapist met with a patient four times. And the interview then had to be edited by someone trained to create a concise narrative that is true to the patient’s perspective and sensitive in dealing with any comments that might be painful for loved ones to read

Julião says he transcribes each patient’s interview himself and edits it into the legacy document. He says he has enthusiastic responses from clinicians and social workers attending the lectures and workshops he has conducted. “But they don’t do it clinically because it’s hard for clinicians to dedicate so much time to this.”

Dignity therapy is most widely available in Winnipeg, its birthplace, where all clinicians at Cancer Care Manitoba, the organization that provides cancer services in the province, have been trained in the protocol. If a patient expresses interest, or a clinician thinks a patient might be interested, a referral is made to one of the therapists, among them Chochinov.

A few months ago, he spent about an hour with a dying woman. She told him about her proudest accomplishments and shared some guidance for her loved ones.

A few days after he delivered a transcript of the conversation, the woman thanked him by email for their discussion and for the document that “will give my family something to treasure.”

“Dignity therapy is part of the bridge from here to there, from living my life fully to what remains at the end,” she wrote. “Thank you for helping me to tell this story.”

Complete Article HERE!

4 ways that older people can bolster or improve their mental health

By Jelena Kecmanovic

Older people generally have fewer psychological problems than the rest of the population. They also have shown the least increase in anxiety and depression during the pandemic, despite being most vulnerable to covid-19.

Resilience among the elderly has been attributed to their ability to better regulate emotions, higher acceptance of the ups and downs of life, and wisdom that comes from having learned to see the big picture.

But old age brings many challenges that can harm mental health.

Even after she lost her second husband to cancer, she kept engaged by providing relationship coaching, gardening, walking her dogs, hiking and doing house repairs. “But when my left knee started giving me more and more trouble, so that eventually I could hardly walk, I felt really discouraged and depressed,” Landrum said.

Many older people do suffer from considerable mental health problems. Among those living outside group settings, the rate of clinically significant depressive symptoms is 8 to 16 percent and anxiety disorders is 10 to 15 percent. The elderly living in nursing homes fare worse. Most older adults with depression and anxiety do not receive treatment for it.

Late life depression, in turn, has been found by researchers to increase self-neglect, cardiovascular problems, morbidity, and risk of suicide. It also leads to worse social and cognitive functioning and compromised quality of life. And geriatric anxiety has been linked to heart problems and high blood pressure, among other problems.

Studies have illuminated some risk factors for geriatric depression and anxiety.

Elderly people who deal with significant physical problems or cognitive decline, who are lonely, or who are grieving or dealing with multiple losses are more likely to experience psychological problems, especially depression. So are older people who have a lot of regret about a life not well-lived and who struggle to find meaning in their lives.

Many existential concerns come to the forefront of people’s minds as they near the end of their lives.

They confront questions such as, “Have I led a meaningful life?” “What has my role been in this world?” or “Am I leaving something behind?” How people perceive, explore, process, and talk about these questions can affect their emotional well-being.

Here are four approaches that psychologists like me find can facilitate these explorations and consequently bolster or improve mental health.

Engage in life review

It is a truism that the older people get, the more they reminisce about the events that took place in the past, sometimes very long ago. Psychologically, there is a purpose to looking back.

One of the most influential psychologists of the 20th century, Erik Erikson, considered the last stage of life to be focused on reviewing life, integrating positive and negative memories, and coming away with a coherent sense of a purposeful life. He postulated that people who had a particularly hard time with this process could end up feeling despair.

“In my work with older patients, we often engage with the question, ‘What has it all been about?’ ” said Herbert Rappaport, a clinical psychologist in the Philadelphia area and the author of “Marking Time.” “It is powerful to help them construct their life stories and to witness how this leads to a sense of peace and acceptance of whatever comes next.”

Research shows that life review improves mental health.

But depressed individuals have a hard time recalling positive events or reflecting back on their lives in ways that are not negative and self-critical. They also tend to remember things in a more general, abstract way, without much detail.

A strategy that counteracts this tendency is to intentionally remember positive situations and times in your life, recalling as much concrete and sensory information as possible.

“I worked with an older woman in my practice who was worried about her daughter’s well-being once she’s gone, and she questioned if she’s done anything to help the next generation, and now it was too late,” said Jason M. Holland, a clinical psychologist in Gallatin, Tenn. “Writing about and discussing these feelings and reviewing her life in totality helped her realize that it’s not all negative and that she’s leaving an important legacy with her grandkid.”

Autobiographical writing or recording, storytelling, scrapbooking, making art that honors your life, family genealogy, oral history interviews, arranging old photographs and creating legacy projects are all ways that promote life review.

Consider sources of meaning

Much of popular psychology and self-help urges us to discover or create meaning in life. “I fear that this just adds more pressure for people, that this can become another reason to feel guilty and ashamed — ‘I’ve failed because I haven’t found the meaning of my life,’ ” said psychologist Joel Vos, author of “Meaning in Life: An Evidence-Based Handbook for Practitioners.”

He suggested that people engage instead with the meaningful activities that they are already doing.

In my own psychology practice, I have found that, during the pandemic, many people have gained more clarity about what really matters in their lives. This often centers on going beyond oneself: connecting with others, with the past and future, with God or spiritual concepts, or with nature. Another source of transcendence includes creating something in the world, from a tenderly tended garden to a painting to a nonprofit organization.

“It is never too late to orient yourself toward what’s meaningful. At 90 years old, I am a living example,” said Irvin Yalom, emeritus professor of psychiatry at Stanford University and the author of “Existential Psychotherapy” and “Staring at the Sun: Overcoming the Terror of Death.

“I still see some patients, but just for a session each because my memory and energy are not what they used to be,” he said. “I connect with my children and play chess and talk with friends. Human connections make life worth living.”

Accept limitations

A common misconception I hear is that acceptance equals passive resignation or giving up. It actually means the opposite; it’s an active process of facing the limitations that come with age, employing courage and wisdom.

“One of the best predictors of successful aging is the ability to disengage from unattainable goals,” said Carsten Wrosch, a psychology professor at Concordia University in Montreal. “While grit and perseverance might be most important for younger people, the elderly with the best psychological outcomes let go of things they can’t do any more and shift toward things they can still do that are purposeful.”

Older adults often struggle with physical or cognitive limitations, with a loss of freedom, and with the ability to control their lives. “Losing control can be the most demoralizing. I suggest adjusting your expectations and finding anything, however small, that you can control,” Holland said.

Dealing with the hardships commonly faced in old age can even be a catalyst for growth. Illness, grief or another negative change sometimes results in an important reckoning. “Significant transition or change can lead to an existential crisis, a chance to reevaluate life and to eventually align it more with your values,” Rappaport said.

Deal with death anxiety

With the coronavirus death toll of at least 750,000 in the United States, many people here have faced death more immediately and more acutely than at any point in recent history. And yet, many still find it hard to talk about death and dying, avoiding news that could trigger death anxiety.

“Numerous studies show that people who have high death anxiety suffer from psychological problems and disorders,” said Rachel Menzies, clinical psychology postdoctoral research fellow at the University of Sydney and a co-author of “Mortals: How the Fear of Death Shaped Human Society.” “In general, death anxiety subsides later in life. But for some elderly, it can be very high and contribute to their depression and anxiety.”

To confront death anxiety, Menzies suggests reading obituaries or watching shows that involve death and dying, especially if these had been previously avoided.

“Visit cemeteries, nursing homes, or funeral homes — anything that will bring you in contact with death,” she said. “That way death becomes a normal part of life.”

Another often evaded topic is a discussion of one’s will and end-of-life preferences and directives. Tackling this now could decrease your fear of death, and provide a sense of dignity and control. And it will be a gift to the ones you are leaving behind.

An exercise I often use with patients, derived from Acceptance and Commitment therapy, a type of therapy which helps people to live with purpose and to stop being hostages of their anxiety and depression — is to have someone imagine their funeral and write their own eulogy and tombstone inscription. This may sound ghoulish, but it not only tends to reduce death anxiety, but also crystallizes the values that are important to people and urges them to put them in place before it is too late.

“Life well lived is the best antidote to death anxiety,” Yalom said.

Complete Article HERE!

Grief-induced anxiety

— Calming the fears that follow loss

By Jessica DuLong

Millions of Americans are grieving loved ones taken by Covid-19. Yet even outside of a pandemic — with its staggering losses of lives, homes, economic security and normalcy — grief is hard work.

“The funny thing about grief is that no one ever feels like they’re doing it the right way,” said therapist Claire Bidwell Smith, author of “Anxiety: The Missing Stage of Grief.” But there is no right way, she insisted. The only “wrong” way is to not do it.

What often trips people up is misattributing the sensations of grief-related anxiety to some unrelated cause. “Probably 70% of my clients have gone into the hospital for a panic attack following a big loss,” Smith said.

After doctors rule out physical illness, clients come to her for counseling, frequently struggling to understand the link between their physical symptoms and bereavement.

This becomes especially problematic in grief-averse places like the United States, Smith explained.

With over 4 million reported Covid-19 deaths reported worldwide since December 2019, grief and loss have touched an untold number of hearts and minds. Smith recommends connecting the dots between loss and anxiety as a critical first step toward healing.

This conversation has been edited and condensed for clarity.

CNN: How are grief and anxiety related?

Claire Bidwell Smith: When some big change comes seemingly out of nowhere and disrupts life, we realize we’re not safe, things aren’t certain, we’re not in control.

All of that is true all of the time, but loss is a huge reminder. The life changes and emotional upheaval are so much bigger than most people understand. Grief, which is the series of emotions that accompany a significant loss, can drop you to your knees. That feeds anxiety.

Grieving people can begin feeling anxious about their own health or the safety of other loved ones. Sometimes, they don’t even realize what they are experiencing is anxiety or is in any way related to their grief.

Anxiety, a psychological condition that causes fear and worry, can present with many physical symptoms. These can be misleading, making you think you have heart palpitations, a stomach issue, a new sweating problem, headaches, insomnia. Many people think they have a medical problem and not an emotional one.

CNN: How do you help people ease their grief-related anxiety?

Smith: My first job is to help people connect the dots between their loss and their fears by tracing their anxiety on a time line: When was I last anxious? How were things before my loved one died?

If the loved one had a long illness, the anxiety might begin before the death. After a sudden death, the anxiety might start right away. Usually if someone’s going to veer into anxious territory, it’s something that happens quickly following loss.

Some people I see, who have never had anxiety in their lives, suddenly begin to have panic attacks right after the death of a loved one. Others, long familiar with anxiety, see symptoms really ratchet up after a loss, or maybe take on new manifestations.

CNN: What coping strategies can people use?

Smith: Seeking out support is really vital. There are so many more support groups and grief therapists available right now. And because of the pandemic, many are available virtually. You can often find support online and start tomorrow. If the therapists or groups you find are booked, get on a wait list. It’s never too late to work through your grief.

If people don’t seek out help to untangle their emotions, they get stuck in anger or guilt. Those play out in substance abuse, depression and anxiety, in relationship issues and in trouble at work and school. So, the domino effect of trying to muscle through and not seeking out support isn’t good.

CNN: What advice do you have for those resistant to formal mental health treatment?

Smith: Self-guided online courses are one option that many therapists provide. Even reading articles or books or listening to a podcast about grief can normalize your experience and help you give you more permission to mourn. You can feel like you’re going crazy, like something else is wrong with you, when really, it’s grief.

Social media offers so many grief resources. A simple search on Instagram for #grief can help you find solidarity with others. Even just reading about other people’s experiences through their posts and comments is valuable because it can help you realize you’re not alone.

CNN: Because of the pandemic, so many people have been unable to be with their dying loved ones. What impact might that have?

Smith: We will see more complicated grief, with extended periods of grieving where people may get stuck in a loop of guilt or regret or anger. That comes, in part, from the feeling that a lot of the losses were preventable, and because people were forced to say goodbye to loved ones over Zoom and FaceTime with nurses wearing masks and face shields. Those kinds of endings can lend themselves to complicated grief.

Clients I’m working with who have lost a loved one to Covid-19 are feeling anger as they watch people get vaccinated — or choose not to get vaccinated. Everyone’s posting reunion pictures. Someone who lost a parent to Covid a month ago is painfully aware of just how close they were to not having to go through this loss.

Initially, they have to work through shock, anger and guilt. Then we can begin to find new ways to say goodbye. That can look like doing self-compassion exercises or speaking with a pastor, minister or rabbi to work on absolution of guilt. It can involve finding spiritual connections to someone they have lost by writing them letters. I urge people to embrace their own sense of ritual and perhaps even hold memorials.

CNN: What role do meditation and mindfulness play in healing?

Smith: When we are grieving, and when we are anxious, we spend a lot of time dwelling in the past and fretting about the future. Meditation and mindfulness help bring our awareness to the present moment.

Meditation also helps us to understand our own thoughts, and how we can learn to detach from negative ideas and irrational fears.

CNN: You write that imagination can be another powerful tool. How?

Smith: I wasn’t there the night my mother died. Even today, I imagine myself crawling into her hospital bed and holding her and saying the goodbye that I didn’t get to. I’ve found catharsis in envisioning what I would have done, had I been able. But it took me years — definitely more than five — to get to that point.

Just like when athletes envision a course the night before, imagination can almost give your body a sense memory, which can be soothing. But it’s not something that people are ready to do right away.

CNN: What role does story play in coping with grief and loss?

Smith: People carry around stories of loss and death, but they often feel like they are suppressing them because they haven’t found good places to share them. How we hold a story is very indicative of how we feel emotionally. When we are holding a scary story, an uncomfortable story, a story of regret for a long time, it plays out in our day-to-day life.

Healing comes from finding outlets to explore a story and possibly find ways to reframe it. We can do that in therapy, counseling, support groups, online grief forums and grief writing classes, among other places.

CNN: You’ve come to believe that staying connected with our lost loved ones can be more healing than letting go. What does that look like?

Smith: That looks different for everyone, and it isn’t something most of us can do right away — we often just want our person back in front of us. But once they are ready, I encourage my clients to call upon their loved ones, continuing to be in conversation with them internally. There used to be this emphasis on letting go and moving on. Now, I feel it’s more important to move forward with the person you have lost.

For example, pondering: What advice would my dad give me about this job offer? What would my mom think of my new boyfriend?

Developing and fostering a relationship with our person can include sharing stories about them, taking on certain aspects of work they did or doing things in remembrance.

CNN: You quote Hope Edelman, author of “The AfterGrief,” who has said the crux of grief work is making meaning out of loss. Is there a way to foster the meaning-making that can have such lasting value?

Smith: In some ways, that stage comes naturally. However, we can’t get there until we work through guilt, regret and anger that stand in the way of our ability to make meaning. If we’re angry with our loved one or a situation that happened, a lot of people will hold onto that anger because it’s a very powerful emotion.

But I’ve never seen a grieving client who hasn’t questioned life in a new way. Where’s my person? Can they see me? Will I ever see them again? Why am I still here?

It’s really hard to go through huge loss and not have those questions. Those inquiries lead to finding meaning and transformation.

Complete Article HERE!

Death and psychedelics

— How science is reviving this ancient connection

By

In November 1963, the writer and psychedelic explorer Aldous Huxley laid in bed, unable to speak. He was dying of cancer. One of his final acts was to pass a handwritten note to his wife Laura. 

His famous last words: “LSD, 100 µg, intramuscular.”

It was Huxley’s dying wish: a large dose of acid, please. Laura Huxley fulfilled the request twice during her husband’s final hours.

First synthesized 25 years before Huxley’s death, LSD was still legal in 1963. Scientists were studying it as a potential treatment for alcoholism and other ailments, as well as investigating its similarity to other psychedelics. It wasn’t until 1968 that the federal government outlawed these drugs due to their association with the cultural turbulence of the 1960s.

Today, several decades later, terminal cancer patients are once again taking psychedelics. This time around the drugs are being administered by doctors and scientists in controlled settings—and they are not microdoses. The results of this research have been nothing short of remarkable.

Laura Archera Huxley, 40-year-old musician and filmmaker, and husband Aldous Huxley, 61-year-old British novelist, pictured at their Hollywood home in Hollywood in 1956. On his deathbed seven years later, Huxley asked his wife for a massive dose of LSD.

Alleviating anxiety and despair

Terminal patients often suffer from feelings of intense anxiety and despair after receiving their diagnoses. For many, this is just too much to bear. The overall suicide risk for these patients is double or more compared to the general population, with suicide typically occurring in the first year after diagnosis.

Terminal patients have twice the suicide risk of the general public. Psychedelics may help reduce their fear and suffering.

That’s where psychedelic therapy may help. After a single large dose of psilocybin, taken in a curated space and supervised by a pair of doctors, many patients report feeling reborn. It’s not that the underlying physical disease has been cured. Rather, the drug prompts a shift in the theme of their emotional self-narrative—from anxiety and despair to acceptance and gratitude.

It may seem curious to think about psychedelic drugs, often associated with hippies and the Grateful Dead, as clinical-grade tools for overcoming our primordial aversion to death. But maybe it shouldn’t be. Maybe this is only surprising if your window of historical perspective is too narrow. Maybe these “novel findings” are, in a sense, a return to somewhere we’ve been before.

Psychedelics at the dawn of civilization

In late 2020 I spoke to Brian Muraresku, author of The Immortality Key: The Secret History of the Religion With No Name, about the use of psychoactive plant medicine throughout antiquity. Our podcast conversation covers this history in more detail, but it’s clear that humanity’s relationship with psychoactive plants extends back at least to ancient Greece—if not further. It’s hard to look at prehistoric cave paintings like the Tassili mushroom figure and not wonder if psychedelics played a part in their creation.

Western philosophy may have developed with help from psychedelics as well. In Plato’s well-known allegory of the cave, a group of prisoners live chained to a cave wall, seeing nothing but the shadows of objects projected onto it by fire. The shadows are their reality; they know nothing outside of it. Philosophers, Plato states, are like prisoners freed from the cave. They know the shadows are mere reflections, and they aim to understand deeper levels of reality.

Plato’s philosophical ideas might have been influenced by psychedelic experiences.

Was Plato tripping?

If that sounds like someone who’s explored those deeper levels with psychedelic assistance…well, maybe it was. In his book, Brian Muraresku explores the significance of the Eleusinian Mysteries, secret ceremonies that involved death and rebirth. For centuries, philosophers and mystics traveled to the Greek town of Eleusis to partake in a ritual that involved an elixir known as pharmakon athanasias, “the drug of immortality.”

“Within the toolkit of the archaic techniques of ecstasy–plant medicine just being one among many–something you find again and again, in Ancient Greece and other traditional societies, is this sense that to ‘die’ in this lifetime, or achieve a sense of timelessness in the here and now, is the real trick.” -Brian Muraresku

Contemporary archaeologists, digging outside Eleusis, have unearthed ancient chalices containing a residue of beer and Ergotized grain. Ergot is a fungus that grows on grain. It produces alkaloids similar to LSD. It’s possible, then, that influential thinkers like Plato were inspired by genuine psychedelic experiences.

This connection between psychedelics and death didn’t end with Eleusis. It survived, often repressed and hidden from view, right through the time of Aldous Huxley.

The connection re-emerges in the 1960s

In the 1960s, Timothy Leary co-wrote a book called The Psychedelic Experience: A manual based on the Tibetan Book of the Dead. Leary, the exiled Harvard professor and psychedelic guru, dedicated the book, “with profound admiration and gratitude,” to Aldous Huxley. It opens with a passage from The Doors of Perception, Huxley’s essay on the psychedelic experience. Huxley is asked if he can fix his attention on what the Tibetan Book of the Dead calls the Clear Light. He answers yes, “but only if there were somebody there to tell me about the Clear Light.”

It couldn’t be done alone. That’s the point of the Tibetan ritual, he says: You need “somebody sitting there all the time telling you what’s what.”

Huxley was describing a trip sitter, someone who guides a person along their psychedelic journey. Sometimes it’s an ayauasquero in the heart of the Amazon. Sometimes it’s a doctor holding your hand in a hospital.

Timothy Leary, shown at home in California in 1979, was deeply influenced by Huxley’s work.

Seeking rebirth within the mind

In his book, Leary grounded Eastern spiritual concepts in the understanding of neurology we had at the time. The states of consciousness achieved by meditation masters and those induced by three hits of Orange Sunshine, he wrote, may actually be the same. Both involve dissolving the ego (“death”) and allowing it to recrystallize as the default mode of consciousness returns (“rebirth”). 

Leary wasn’t talking about magic. Scientists know these as “non-ordinary brain states,” inducible by rigorous attentional practice (meditation), pharmacological intervention (psychedelics), and organic decay (dying).

The ability of psychedelics to induce these remarkable brain states may also be why they’re showing such promise in alleviating the very ordinary fear of death.

Today’s psychedelic treatments: Coping with death

So what, exactly, has recent research on psilocybin as an end-of-life anxiety treatment involved?

A few small studies have seen psilocybin administered to dozens of cancer patients. They’ve been conducted in a randomized, double-blind, placebo-controlled fashion. In general, a large majority of patients showed sustained, clinically significant reductions in measures of psychosocial stress and increased levels of overall well-being.

For example, in one study, 80% of the patients found that a single dose of psilocybin quickly relieved their distress. Remarkably, in some patients that positive effect lasted for more than six months.

Sprouting new physical connections

What’s going on at the neuronal level to produce those changes? We don’t know for sure, but some preclinical research has given us a hint. Both psilocybin and LSD have been shown to induce rapid and lasting antidepressant effects in lab animals.

Early studies hint at how psychedelics may produce positive changes in the brain.

Early indications are that psychedelics may allow brain circuits to rapidly sprout new physical connections. This is exciting, but again: These are non-human studies, and it’s early.

It’s gratifying to see any of these studies happening, frankly. This is research that’s been stalled by the Schedule I status of psychedelics for half a century. Much of this work requires obtaining a special federal waiver to study banned substances, which slows progress.

Potential help for end-of-life patients

Fortunately, the FDA recently designated psilocybin therapy as a “breakthrough therapy” and the DEA has proposed increasing the supply of psilocybin for research. This should speed up the rate at which we understand the clinical efficacy of psilocybin and related psychedelics.

Here’s more good news: In terms of psilocybin’s efficacy as a treatment for end-of-life anxiety, larger human trials are already underway.

Dr. Stephen Ross, one of the field’s leading researchers, has described the significance of this work: “If larger clinical trials prove successful, then we could ultimately have available a safe, effective, and inexpensive medication—dispensed under strict control—to alleviate the distress that increases suicide rates among cancer patients.”

Huxley: Ahead of his time

In one sense, Aldous Huxley was ahead of his time. More than a half-century before today’s renaissance in psychedelic research, his own experiences had evidently brought him to the conclusion that the best way to experience death was in a psychedelic trance.

In another sense, though, Huxley was one in a long line of creators stretching back to ancient Greek philosophers and perhaps even to prehistoric cave artists. They may all have used psychedelics to catalyze their outward creativity and comfort their inner distress.

Huxley titled his famous introspective essay, The Doors of Perception, after a quote from the English poet, William Blake: “If the doors of perception were cleansed everything would appear to [us] as it is, infinite.”

We will never know what he experienced in the final hours before his death, after handing that note to his wife. I like to think that for him, the last breath seemed to last forever.

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Dying isn’t as bad as you think

The thought of death makes many of us feel frightened, so we barely talk about it. But dying is far gentler than Hollywood would lead us to believe.

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Here’s a delicate truth: we’re all approaching the ends of our lives. Every day counts us down, it’s just that most of us rarely talk, or even think, about it. And when we do, we feel scared of pain and panic and feeling out of control; afraid of sadness and saying goodbye; worried about deaths we’ve seen on TV or in films.

I’ve worked in palliative medicine for over 30 years, helping to improve the conditions of those nearing the ends of their lives. I’ve sat by the bedsides of scores of dying people and it’s taught me a lot about the realities – and misconceptions – of death.

More than half a million people die in the UK each year and almost all of them from a condition that gives at least some warning that death is approaching. If you knew you had limited time left to live, what would you want to do? Who would you want to be with? Are you keen on hospitals? Could your home be suitable? What’s your opinion about being kept alive on a ventilator, even if you’re unlikely ever to regain consciousness? How much treatment is too much? Are you an organ donor?

Here is some good news: death is almost certainly not going to be as bad as you think. Just like birth, death follows a predictable pattern. Initially, illness reduces people’s energy levels. The mechanisms are complex, but the outcome is that they need more sleep. Naps help, but energy is quickly used up, and another snooze is required.

 

At the end of life, there’s an exhalation that just doesn’t get followed by an inhalation. As simple and gentle as that.

As time goes by, those naps last longer and change in character. Although the person doesn’t notice any difference, they dip into unconsciousness for a while, so we’re temporarily unable to wake them. At this point, it’s time to switch any symptom-managing medications to a subcutaneous route like a syringe pump, to stop any symptoms from coming back if we cannot rouse the patient when their medicines are due.

If their illness isn’t affecting their thinking, then a dying person will still appreciate their family and friends when they’re awake, the occasional sip of fluid, perhaps a spoonful of something tasty, although people rarely have much appetite. They may stay in bed. They may appreciate peace and quiet, or their favourite music (I’d prefer BBC Radio 4, by the way). The periods of unconsciousness get longer and, eventually, the dying person is simply unconscious all of the time.

We can change evolution © Scott Balmer

Now, the next change begins: in deep unconsciousness, breathing is driven by the only part of the brain still functioning. This produces an automatic breathing pattern that cycles between deep, sometimes noisy breathing and very shallow breathing. The rate also alternates between fast and slow; there can be gaps that are several seconds long. Saliva may gather in the throat, causing air to bubble through the fluid, which makes a rasping or rattling noise. These noises are a sign of deep unconsciousness, not of distress.

At the end of life, during a phase of slow, shallow breathing, there’s an exhalation that just doesn’t get followed by an inhalation. As simple and gentle as that. Sometimes so gentle that the family around the bed doesn’t notice. No pain or panic; no sense of loss of control. This is what the vast majority of people experience.

By knowing this gentle pattern, dying people can make choices about where and how to be cared for. Their families are often asked to report dying people’s wishes. Do you know the answers? Does your family know yours?

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Can Psychedelics Help Make Dying Easier?

“I need to be in a space where I am not hopeless,” says one terminal cancer patient who is suing the Justice Department and the DEA for her right to use psilocybin

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Erinn Baldeschwiler had already been having a rough go of it. A mother of two teens, she was going through a divorce, moving out of her house, and splitting from her business partner all as the severity of the Covid-19 pandemic was becoming a reality. Amid it all, she was diagnosed with stage four, triple-negative metastatic breast cancer. The doctors told her that even with chemotherapy every week — something which she knew would severely impact her quality of life — and immunotherapy every two weeks, she likely had about two years to live.

“It was devastating,” says Baldeschwiler, 49. “I thought, what if I’m not going to be here for my kids? A dear friend passed very suddenly, unexpectedly from cancer a few years back and I just know the pain that it leaves behind. It was really, really heavy.”

Now Baldeschwiler, along with Michal Bloom, another cancer patient diagnosed with stage 3 ovarian cancer in 2017, their palliative care physician, Dr. Sunil Aggarwal, and his clinic, AIMS Institute, are suing the Department of Justice and the Drug Enforcement Administration. Baldeschwiler and Bloom want to try psilocybin, the psychoactive component in psychedelic mushrooms, in a therapeutic context for what’s sometimes called “end-of-life distress,” depression, anxiety, and other mental health challenges that can come along with a terminal diagnosis. 

Kathryn Tucker, one of seven attorneys on the case, says Baldeschwiler and Bloom have the right to access psilocybin under Washington state’s Right to Try law, a law which permits patients with a terminal illness to access drugs that are currently being researched, but not yet approved. The federal government, she says, is wrongfully interfering with that right.

According to Tucker, who has devoted much of her career to helping pass and reform legislation meant to ease the suffering of those at the end of their lives, states are the primary authority for the regulation of medicine. And yet, in January, Tucker says, when she wrote to the Drug Enforcement Administration, on behalf of  Aggarwal, Baldeschwiler, and Bloom, asking them how they should go about accessing psilocybin, the administration wrote back saying they couldn’t because psilocybin is a Schedule I drug on the Controlled Substances Act, the most restrictive category defined as drugs with “no medical use” and a “high potential for abuse.” (Typically, physicians with terminal patients would go straight to a manufacturer to get access to a drug under a state’s Right to Try law, but they needed to write to the Drug Enforcement Administration about the process for access since psilocybin is federally illegal.)

In addition to Washington state, 40 states have Right to Try laws, although they’re all worded slightly differently. (Some use language like “terminally ill” while others say “life threatening,” which could change who qualifies.) Overlaid on top of these state Right to Try laws is a federal Right to Try law, which President Trump signed in 2018. In this case, Tucker and the fellow attorneys are primarily focused on patients’ rights under Washington’s Right to Try law, but are using the federal Right to Try law to bolster their argument.

Both the Washington law and the federal law state that terminal patients can access drugs that are not yet approved by the Food and Drug Administration so long as they’ve successfully made it through the first phase of an FDA-approved clinical trial and are currently being investigated. Psilocybin is currently in the final phase of research before FDA approval, and has shown so much promise for treatment-resistant depression and major depressive disorder that it’s been granted “breakthrough therapy” status by the FDA.

“The DEA just did not know about or did not understand Right to Try and this lawsuit is something of an educational vehicle,” Tucker says. Yes, she says, psilocybin is on the Controlled Substances Act, but in the hierarchy of legislation, The Federal Food, Drug, and Cosmetic Act, which Right to Try falls under, trumps the Controlled Substances Act. Tucker says DEA officials just don’t understand that or are behaving as though they don’t. (The Department of Justice declined to comment for this story.)

“I don’t want my diagnosis to be upsetting and dark and hopeless for my kids,” says Baldeschwiler. “So I need to be in a space where I am not hopeless and there is peace. I know for certain if I’m negative and ‘woe is me,’ and desperate and have feelings of like ‘I just want to check out,’ that’s going to make it a hundred times worse.”

Baldeschwiler first got the idea to do psychedelic-assisted psychotherapy from Aggarwal, who she’d found after looking around for more holistic treatment plans in the Seattle, Washington area. Aggarwal discovered what he says is the extraordinary potential of psilocybin to help cancer patients when working with the psilocybin research group at New York University.

Researchers, going back to the late 1950s, found psychedelics such as psilocybin and LSD showed promise for end-of-life distress as well as a host of other mental health conditions, from alcoholism to trauma. Much of this research, however, is not considered valid by the Food and Drug Administration because it did not follow their current protocols.

After Richard Nixon signed the Controlled Substances Act into law in 1970, there was essentially a decades-long ban on psychedelic research. It was a landmark study, published in the Journal of Psychopharmacology, in 2006 — showing psilocybin holds promise for end-of-life distress in cancer patients — that largely jumpstarted what’s now known as the “Psychedelic Renaissance,” the second wave of psychedelic research in the U.S. since the 60s. The study found that after two or three psilocybin sessions, a majority of participants had significant and positive changes in their mood, while 33 percent rated the experience as the most spiritually significant experience of their life, comparable to the birth of a first child or the death of a parent. Since then, this research has continued with the same results in trials at Johns Hopkins and New York University.

“Many, many patients come to me wanting this,” says Aggarwal of psilocybin-assisted psychotherapy. “They read about it in the news or in Michael Pollan’s book.” He says it’s hard to predict, but there’s surely millions of terminally ill patients who could benefit from psilocybin therapy. In 2021 alone, an estimated 1.9 million Americans will be diagnosed with cancer, according to the National Cancer Institute. That doesn’t even take into account, says Aggarwal, all the other terminally ill patients, such as those with Lou Gehrig’s disease, whom he also works with.

Susan Patz, a 62-year-old woman with Lou Gehrig’s disease, filed an Amicus brief, a statement which can be filed to the court by someone in favor of a particular side of a case, for this lawsuit. Patz lives in the town of Monroe, Washington, where her husband John is now her caretaker as she slowly loses agency over her body and even her ability to breathe and swallow. 

“Because of the ALS, I have had to give up a lot of the activities I was passionate about,” she wrote to the court in a brief filed on May 24th. “I loved gardening, and I used to delight in driving the tractor around our property. I loved to swim at the YMCA five days a week. I loved cooking and trying new recipes. I can no longer do any of those things.” She often stays up until 3 or 4 in the morning, because she can’t sleep; she used to be “foodie,” but now doesn’t want to eat or even see friends for fear that they’ll see her as a “sick person.”

“I am desperate to try something that will work, something that will enable me to experience joy and pleasure again,” she wrote to the court. “If the Right-to-Try laws don’t allow someone like me the chance to try something that may help alleviate my suffering, then what good are they?”

On June 21st, the Department of Justice will file a brief on behalf of the Drug Enforcement Administration. On July 12, the petitioners — Aggarwal and his patients — will be given the opportunity to reply. And then, likely in September, the oral argument will take place in which, Tucker says, they may get their first insights into where the court stands on the case. She’s hopeful that perhaps they won’t even get that far, though, because the Drug Enforcement Administration will reach out with the intention of finding a resolution.

Either way, Tucker says, if the case passes, the next doctor and patient who want access to psilocybin for end-of-life distress shouldn’t need to take it to court again. If they succeed in Washington, then, she says, doctors and patients in states with Right to Try laws should be able to access psilocybin.

There’s many unknowns, however, about how doctors and patients would go about notifying the DEA when they’re going to conduct psilocybin therapy — and how they would access the psilocybin itself. Currently, under Right to Try laws, doctors don’t need government approval at all — they can go straight to manufacturers to request access to a drug that’s under investigation for their patient. But the process might be different for psilocybin and a host of practical issues exist, too, such as that it’s difficult to find federally-licensed labs making synthetic psilocybin as there’s no publicly available directory. At this point, Tucker says, they’re just focused on taking things in “small bites.”

“It kind of kills me that I have to be dying to even possibly have access to this medicine when I think it could be incredibly helpful for so many people that maybe don’t fall into that category,” says Baldeschwiler. “I truly, truly am hoping that we have some open minds and open hearts with regards to the DEA and that they honor the intent and the letter of the law because we fall within it.”

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As a doctor, I’m trying to have more empathy for my patients — and myself

By Joseph Stern

“Well, then. I’m going to die, aren’t I?” my friend asked me from a bed in the emergency room. I faced him and his wife. I had worked with Alan Davidson for 20 years. A recently retired ER attending physician, he came in with new right-sided numbness one Saturday evening.

Initially, the ER team called a “code stroke,” rushing to take advantage of the precious minutes available to administer clot-busting drugs or open blocked arteries before the patient suffers more brain damage. A CT scan suggested not a stroke but a brain tumor. I was consulted when an MRI suggested a glioblastoma. We both knew his prognosis was likely poor.

Three days later, I took him to surgery, aware that he was trusting me with his life. When he awoke, Alan and I were pleased that his numbness was no worse and he had no weakness. The postoperative scan showed we had removed virtually the entire tumor.

When the pathology came back, I met with Alan, his wife, and his son. I sat on the edge of his bed and told him his diagnosis. Pathology suggested glioblastoma, a malignant brain tumor with a terrible life expectancy. Neither of us was surprised: We both knew this was coming. But he choked up as he expressed gratitude for the care he was receiving.

Holding back my own tears, I told him how honored I felt he trusted me enough to care for him. Previously, I would not have allowed myself to acknowledge my own gratitude to Alan or accept the depths of his gratitude to me: I would have pushed these feelings away.

More than 25 years earlier, I had faced a similar situation with different results. As a resident, I helped my supervising doctor remove a tumor from deep within the temporal lobe of a man in his 30s. The surgery went well, but we knew the patient’s prognosis was dismal. I entered the cramped consultation room and encountered, for the first time, his wife and three small children. They nervously awaited our report.

I couldn’t bring myself to tell them this was an incurable tumor from which the patient would die in the near future. Instead, I parsed my words. They were technically correct, yet detached. Overwhelmed, I had no idea how to face the patient’s family. What they needed was honesty and compassion. Instead, I avoided connecting, leaving someone else to fill in the gaps. To this day, I carry a sense of shame and failure: I avoided pain, but fell short as a physician.

Physicians develop detachment and emotional distance as a coping mechanism against the pain of grief, loss and failure. Yet our attempts to protect ourselves through detachment ultimately intensify feelings of loss and deprive us of resolution. I have come to see that these unresolved feelings contribute directly to professional burnout.

Mary Buss, director of ambulatory palliative care at Beth Israel Deaconess Medical Center and associate professor of medicine at Harvard Medical School, says that physicians are afraid of, and avoid, feelings of sadness. We reason, mistakenly, that being open to pain and loss could damage us; we fear losing our composure and appearing vulnerable. Yet accepting vulnerability is what most closely connects us with our patients. This is what they remember in the end, after all. Patients crave acceptance, appreciation, and acknowledgment; we all want this for ourselves.

As the brother of a patient, I discovered how it felt to be on the receiving end of care lacking in compassion as I observed occasional blunt, insensitive or confusing comments from the medical staff. I became determined to connect more deeply with my patients and my own emotions. Yet I wondered: How could I balance connection and detachment as a neurosurgeon? Did connecting emotionally with my patients mean I could no longer detach enough to be an effective surgeon? Would it be better to become a technician and leave the emotions to others

I found my approach through a conversation with Helen Riess, a psychiatrist and author of “The Empathy Effect: Seven Neuroscience-Based Keys for Transforming the Way We Live, Love, Work, and Connect Across Differences,” who explained that through the process of developing self- and other empathy, emotional armor could be replaced by “emotional agility.” Intrigued, I went on to read Susan David’s “Emotional Agility: Get Unstuck, Embrace Change, and Thrive in Work and Life,” which characterizes this healthier stance.

Emotional agility enables us to move easily between powerful emotions, recognizing feelings without becoming bogged down by them; to move fluidly through life’s demands without becoming stuck or overwhelmed.

Emotionally agile people derive power from facing, not avoiding, difficult emotions. By allowing ourselves to be vulnerable, physicians become better able to connect more deeply with our patients and ourselves. I came to appreciate that it is possible to move between dispassionate technical precision and intense emotional connection without having to choose between them.

I sat with Alan and his family after his surgery, and we talked until I had to return to the operating room for another case. As I left, Alan remarked that I seemed to get energy and joy from my work. I was surprised to realize that I did feel energized, not depleted; privileged to witness both the beauty and fragility of life. At that moment, I knew I had discarded my suit of emotional armor. In its place was something better and more powerful: emotional agility.

Weeks later, Alan was readmitted to the hospital with increasing right-sided numbness. I read him a draft of this essay as he sat in his hospital bed, unable to control his computer or phone yet intellectually forceful and emotionally attuned. He said that he wanted me to tell his story. He felt strongly this message must be shared, agreeing that doctors often carry a burden of private grief and perceived failures.

We spoke of his children, his grandchildren, his wife. He told me of professional mistakes and a sense of failure that haunted him, yet he also spoke proudly of the thousands of patients he had cared for, their individual stories and faces no longer distinct but flowing through him.

Sitting at my friend’s bedside, I saw Alan forgive himself. He always tried to do his best.

Sometimes, he failed. Just as I often felt powerless, unable to pull someone from the wreckage I saw coming, yet I had done my best. As a resident years ago, knowing that a young husband would not live for long and that his children would lose their father, I had done all I could do — except to allow the enormity of this loss to wash over me, to share it with his family and to accept it, as Alan was doing in his own life

Alan reinforced for me that it is possible to be a skilled surgeon and also a caring and emotionally connected doctor; to hold someone’s hand, and to be present. I couldn’t repair my failed conversation with that family, but I can learn from my mistakes. As long as I continue to practice, there will be another opportunity to try to get things right.

And, as Alan told me, these lessons hold for our lives beyond practice. Part of emotional agility is self-compassion, often a sticking point for physicians. We tend to be unforgiving of ourselves (and of our colleagues). Just as we need to recognize and admit our failings, we also need to let them go. We must forgive ourselves and each other.

These are essential steps toward accepting our vulnerability and achieving emotional agility. Only then can we abandon our detached and defended selves and make the connections that sustain and enrich us.

Alan Davidson, born Jan. 6, 1942, died June 26, 2020. Joseph Stern is a neurosurgeon in Greensboro, N.C. He is the author of “Grief Connects Us: A Neurosurgeon’s Lessons on Love, Loss, and Compassion,” published in May by Central Recovery Press. His website is josephsternmd.com.

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