Category: Fear of Death

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New end-of-life doula services focus on rural, houseless populations

— OHSU School of Nursing alum aims to make end-of-life a social, not medical event

By Christi Richardson-Zboralski

As a hospice nurse, Erin Collins, M.N.E., RN, observed that many of her patients were afraid of dying, in denial of their imminent death, and consequently unprepared for it.

Now, she’s seeking to change that: Collins’ new organization, The Peaceful Presence Project, views compassionate end-of-life care as a basic human right, and is creating a social death care movement through education for clinicians, volunteer-based programs, and an innovative concept called end-of-life doulas.

“As health care providers, it is not always about saving lives at all costs, it’s about supporting someone to live and die well,” Collins said. “That often includes where they want to die and who they want to be present.”

Collins is a certified hospice and palliative care nurse with 16 years’ experience in oncology and end-of-life care. She recently completed a Master of Science in Nursing Education at the OHSU School of Nursing, Portland campus, and was selected as a 2022 Cambia Health Foundation Sojourns Scholar.

The mission of The Peaceful Presence Project is to reimagine the way communities talk about, plan for and experience serious and terminal illnesses. Its approach is based on the compassionate communities model of end-of-life care, which asserts people facing serious illness should spend 5% of their time with a health care professional, and views the end-of-life as a social event with a medical component — rather than the other way around. Their doula program helps fill the 95% of time people aren’t face-to-face with their health care provider.

Doulas are people who are trained to serve. Many people are familiar with birth and postpartum doulas, who serve families during and after the birth of a child. End-of-life or death doulas serve families during the end of the life cycle. End-of-life doula courses provide training in how to be a present and active listener; create a calm and compassionate environment; and provide non-medical comfort measures, such as distraction, guided imagery and repositioning to help alleviate symptoms. Trained volunteers may help with legacy projects, including collages, audio or video recordings, and other ways to display physical objects. When needed, they help with memorial planning.

The trainings emphasize how to facilitate compassionate discussions about death-related topics. In 2023, Collins will develop a continuing education program for rural health care workers through her Sojourns Scholar project to improve access to palliative care in communities where specialists often don’t exist.

Community-based end-of-life support

Lily Myers Kaplan speaks highly of The Peaceful Presence doula training she took in 2022. Meyers Kaplan is author of two books on loss and legacy, co-founder of The Spirit of Resh Foundation, the Ashland Death Café and The Living/Dying Alliance of Southern Oregon.

“There was a particular session on approaching end-of-life with veterans, which helped me see the need for diverse approaches to different populations. The difference in end-of-life support between those who have lived in a rural setting, caring for the land, or being actively reliant on their physicality versus someone who has had a more traditional or urban life is quite distinct.

“For example, caregivers who may be responsible for vast swaths of land — anywhere from 20 to 80 acres or more — need support from others who understand their needs,” said Myers Kaplan, who lives in the Applegate Valley, a rural area of Oregon that includes large stretches of land that provide solitude and a level of independence that most urban lifestyles don’t experience.

A caregiver in Depoe Bay reluctantly accepted help from The Peaceful Presence Project after his wife got him on board. After several long years of treatment and many ups and downs, Ray Burleigh’s adult daughter, Becky, had reached a point in her cancer treatment where it no longer worked. Burleigh had strong doubts when the hospice nurse brought up the topic. However, his wife, Jeni, said yes to the help.

With the support of two death doulas from The Peaceful Presence Project, Elizabeth and Erin, the Burleighs found some measure of relief. The death doulas told the family they would bring community support from around the Bend area.

“I was still not convinced. We needed practical help. Becky’s house is hard to heat and she was concerned they were spending too much money on keeping the house warm. It’s heated by a wood stove,” said Ray. “I told them to bring us some wood, not expecting anything. Two nights later, a truckload of wood came — not just one bundle, a truckload. I was shocked! We couldn’t have done this without Elizabeth and the doulas.”

Without the doulas’ help, Ray said they would have had to put Becky in the hospital, and possibly ended up sick themselves.

“The doulas provided night-shift help because we weren’t getting any sleep. They helped with groceries, created a schedule for visiting hours, and the fire,” he said.

Elizabeth and Erin identified 25 people in the city of Bend who were willing to help them out, including neighbors, and many people who are now friends of the Burleighs. Jeni’s family from the same area were also there to help.

Because of his time alongside these doulas, Ray has decided to take The Peaceful Presence Project doula training.

End-of-life care for under-resourced communities

Lora Munn, a yoga teacher who is National End-of-life Doula Alliance proficient, took The Peaceful Presence Project training in 2021.

“End-of-life care is not only being talked about in rural communities, but also actually being spread throughout rural communities thanks to the folks at The Peaceful Presence Project,” she said.  

Munn lives in White Salmon, Washington, and serves all communities located in the Columbia River Gorge. She said she understands that “folks in rural and houseless communities may not have access to resources for the dying and their loved ones in the same way that urban communities do. Because of my education and training through The PPP, I am able to provide these necessary services to my small community. Through my training, I learned how to provide compassionate care for all beings, regardless of housing status or location.”

Because palliative and end-of-life care resources are sparse within rural and houseless communities, Collins and her team facilitate advance care planning to encourage these populations, and others, to think about their end-of-life experience.

“Parts of the state where there is no hospice care or even palliative care need more resources, and one way to address that is to have support embedded in the community,” Collins said.

Through two grant-funded projects, doulas and public health interns have been trained to hold advance care planning “pop-ups” at a navigation center for people experiencing homelessness, as well as in rural health clinics. Navigation centers are low-barrier emergency shelters that are open seven days per week and connect individuals and families with health services, permanent housing and public benefits.

Conversations about what their death experiences could entail are uncommon for people experiencing homelessness, Collins said. The general population tends to choose a spouse or family member as their medical decision-maker. But within the homeless population, a non-family member or someone in their so-called street family is more likely to be their choice. In the absence of a named decision-maker, the hospital may call an estranged family member or someone with whom they are not in contact.

“Equitable care means providing equitable services,” Collins said. “This includes advance care planning for people who are experiencing homelessness. We found that many of these folks have never been asked what their preferences are at end-of-life.”

Educating health care professionals about palliative care

Although it’s important to educate people in the community, it doesn’t stop there. Collins emphasizes the importance of education for all health professionals about serious and terminal illnesses — which is not traditionally an in-depth part of the health care curriculum.

“Nurses and physicians don’t always know how to have those conversations. Palliative care should be part of all health education,” Collins said. “Not just a specialty, but a standard part of education.”

To get participants thinking about ways to support their patients, The Peaceful Presence Project asks them to reflect on key questions: How do you ask someone about what they want if they are dying? How can you have a compassionate conversation?

“Training in communication skills allows you to feel empowered as a provider and as a fellow human being,” said Eriko Onishi, M.D., an assistant professor of family medicine in the OHSU School of Medicine and a palliative care physician at Salem Hospital. “It makes you a better listener through your professional sense of curiosity about other people. You feel as if you are truly walking alongside your patients, guiding them in the right direction, instead of just feeling the way blindly, guessing at each step.

“It’s important to understand that it isn’t about exercising power or control over patients,” Onishi continued. “Rather, it is using this powerful communication tool to support everyone involved, to help them to feel safe because the situation itself is under control.”

Onishi is passionate about the need for such conversation skills training.

“To be a clinician, both knowledge and communication skills are equally essential — it’s never a one-or-the-other choice,” Onishi said. “As a physician, my job is to provide medical guidance to the patient and their family, guided by the best intentions and a caring heart. If I cannot do all of these things, I cannot do my job.”

Ultimately, Collins said, it’s up to the individual patients to discuss how they want to experience their end-of-life, knowing that flexibility and adaptability are key. Having a plan is important, and when things don’t go according to plan, community-based support for death and dying can alleviate a stressful process for all involved — providing what people need to live and die well.

Complete Article ↪HERE↩!

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‘I will reflect on my own death – and try to conquer my fears’

— The thing I’ll do differently in 2023

‘It is death that makes life meaningful’ … Monica Ali.

I don’t want to be mawkish or indulgent. But I want to consider my mortality in order to live well in the years I have left

By

Have you ever spent time seriously contemplating your own death? I haven’t. I’m 55, in good health, exercise regularly, eat well and – barring the proverbial bus – have no reason to think death is imminent. Thoughts of my own mortality naturally arise from time to time but they’re easy to banish. After all, both my parents are still alive, forming a kind of metaphysical barrier. Not my turn yet! But one thing I will do differently in the coming years is to begin reflecting on my demise. Does that sound mawkish? Self-indulgent? Pointless?

Well, I won’t be picking out a coffin or selecting music for the funeral or tearfully imagining the mourners gathering. All that would be a waste of time and, like everyone else, I’m busy. With work, family, friends, travel, trips to the theatre, galleries, restaurants and so on. What I mean to say is that I have not lost my appetite for life. Why, then, do I wish to begin meditating on death?

For two reasons: in order to live well during whatever years I have left; and to begin to confront and maybe even conquer the fear that, thus far, has stopped me from having more than a fleeting engagement with the knowledge that death is the inevitable outcome of life.

There’s a well-worn trope about living each day as if it’s your last, or if you only had one year to live you wouldn’t choose to spend it at the office. That doesn’t quite chime with me. If I only had a year to live, I’d still choose to work. (I might try to write faster!) Nevertheless, it is death that makes life meaningful. In Howards End, EM Forster puts it like this: “Death destroys man: the idea of Death saves him.” The value of our days floats on the metaphysical stock market of ideas that we hold in our minds.

The idea of ceasing to exist isn’t easy to contemplate. But I don’t believe in reincarnation or an afterlife. I don’t believe that raging against the dying of the light is going to achieve anything. And ignoring the issue isn’t going to make it go away. In fact, it makes the prospect more, rather than less, frightening.

I first read The Complete Essays by Michel de Montaigne when I was at college, but it’s only now that I’m ready to take on this piece of sage advice: “To begin depriving death of its greatest advantage over us, let us deprive death of its strangeness, let us frequent it, let us get used to it; let us have nothing more often in mind than death.”

How will I go about it, then, this new contemplative practice? Place a skull or some other memento mori on the shelf above my desk? Fly to Thailand or Sri Lanka and visit the Theravāda Buddhist monasteries where photos of corpses are displayed as aids to the maranasati (mindfulness of death) meditation? Walk around graveyards?

I’ve recently rented an office where I go to write. There’s a huge picture window under which I’ve placed the desk. The window overlooks a Victorian graveyard that’s still in use. When I sit down, all I can see are the trees. But when I stand I have a view of the tombstones and, in the distance, the crematorium.

One day I’ll be gone, my body consigned to the earth or turned to ash. Sooner or later I’ll be forgotten. Truly accepting that revivifies life. It doesn’t make every moment wonderful, but knowing I will die is a source of strength to endure the difficulties, and a spur to be more present for all that is good and precious in life.

Complete Article ↪HERE↩!

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Celebrating the Day of the Dead with my students helped me overcome my fear of death

by Summer Koester

  • My Spanish classroom is covered in flowers and glitter as we prepare to celebrate the dead.
  • While death is often a taboo topic in the US, in Mexico the dead are widely celebrated.
  • Celebrating the Day of the Dead, or Día de los Muertos, has taught me not to fear my own death.

The third time I wound up in the emergency room struggling to breathe, I started to consider my mortality.

When I was a child, asthma landed me in an oxygen tent for a week. As an adult, when even my rescue inhaler and nebulizers couldn’t help my lungs, I unconsciously started writing my own obituary.

I tried not to think about death. But it always lingered, in a spooky, dark corner of my mind.

Americans largely don’t talk about death, as if mentioning it would summon the Grim Reaper. In a survey conducted in April by Chapman University, 29% of respondents indicated they were afraid or very afraid of dying. A 2013 article in Psychology Today described death as the US’s “leading source of uneasiness, discomfort, and apprehension.”

My Spanish class showed me how to celebrate

There’s no better time of year to witness our culture’s fear of death than during Halloween, when we adorn our yards with skeletons, mummies, and zombies.

In my Spanish classroom, however, we observe differently.

This time of year, my classroom floor is covered in glitter and brightly colored feathers. My students are putting the finishing touches on their sugar skulls for Día de Muertos, which falls on November 1 and 2. In Mexico and around the world, people remember loved ones who have passed on with altars, marigolds, photos, offerings, and celebrations.

As a Spanish teacher, I started introducing my students to Day of the Dead about five years ago. We learn about how the Day of the Dead is celebrated in Mexico and make skeleton puppets, sugar skulls, or altars. I ask my students to think of a loved one who has died and draw an altar for them. We sit in a circle and talk about which artifacts we would place on an altar to conjure our loved ones for a night of fiesta.

Mexican tradition holds that the dead would be offended by grieving and sadness so the festivities should be joyful and full of laughter.

The Mexican poet Octavio Paz once said: “To the people of New York, London, and Paris, ‘death’ is a word that is never pronounced because it burns the lips. The Mexican, however, frequents it, jokes about it, caresses it, sleeps with it, and celebrates it. It is one of his favorite toys and most steadfast love.”

COVID-19 made me reconsider things

Then COVID-19 came. Knowing that a respiratory disease could put me at greater risk of illness or even death, I considered the possibility that I could die tomorrow.

Death no longer felt like a spooky shadow that needed to be avoided. It had always been there, always would be. But that shadow was now adorned with flowers and color and photos of loved ones.

Psychologists talk about naming, confronting, and reframing our fears to help us overcome phobias. By allowing the brain to get used to a feared object or situation, we can adjust how we respond.

Carlos Olmedo, the director of the Dolores Olmedo Museum, explains it this way: “For Mexicans, death was part of life. For us, it was like going from day to night so we didn’t feel something we were losing; it was just a step more.”

Celebrating Día de los Muertos with my students and children has helped me reframe how I view death and dying. It no longer feels like something separate from life but as something that’s connected, just as the day and night are connected — no longer a loss, but another step.

Complete Article ↪HERE↩!

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I retrained as a hospice nurse – and lost my fear of death

A year after being widowed, Laura Horn began volunteering in a hospice, sitting with people who were about to die. She soon realised she could do more for them …

‘I’ve had life experience’ … Laura Horn.

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Laura Horn has found what she calls her end-of-life career, “a vocation to last the rest of my life”. In her 60s she decided to train as a registered nurse, specialising in hospice care. “I’m a brand new nurse but that’s not what’s important,” she says. “I’ve had life experience.” After Margaret, her wife of 20 years, died “suddenly and unexpectedly”, Horn understood she had to make a change. She had been thinking about volunteering in a hospice, after her mother and both parents-in-law were given palliative care. Following Margaret’s death in January 2017, Horn applied to the Zen Hospice Project in San Francisco, which trained volunteers to sit with the dying. They told her: “Wait a year. You can’t do it right away.”

Looking back, she says, they were right. “You can’t jump into something new until you have grieved appropriately.” She had “good therapy” and did what she calls “walking grief – I mean, I walked everywhere”. A year later, she reapplied. “They said, ‘Why do you want to do this?’ and my first sentence was, ‘I know loss.’”

As well as Margaret, she had outlived her parents, her parents-in-law and her brothers. They both “died of substance abuse, one of a heroin overdose, and the other of long-term substance abuse. That, I’m sure, was part of my motivation,” she says. “That kind of pain can also lead to openness and joy, and that’s what I’ve discovered.”

Volunteering was “a truly transformative” experience for her and Horn realised she wanted more. “I thought, I want to do the nursing part too.” As an undergraduate, she had studied biology, and her early work was in public health before she switched to education research. Most of her career was spent “trying to determine what helped students succeed in college and beyond. But I always had the sense that I would circle back to the world of health,” she says.

At 63, she enrolled at one of the very community colleges whose impact she had been researching, to take the prerequisite courses – anatomy, physiology, microbiology, pharmacology. From there, she applied to nursing school at 65, on an accelerated one-year programme for graduates.

The intensity was staggering. “I was devoting every waking hour to studying and my clinical work,” she says. The friends who had supported her after Margaret’s death, and lived nearby in Berkeley, California, cooked for her three nights a week. Horn would visit for an hour, then leave to study. “We called it ‘catch and release’,” she says. Her two children with Margaret had left home but were supportive. When she graduated, one of her friends made a little sign out of brightly coloured paper – “It’s never too late” – and stuck it to the back of her mortarboard.

In some measure, Horn has put herself back at the heart of the storm, in a place of death and loss, which she occupies for three shifts a week at the hospice where she works in Oakland. How emotionally taxing is her new career?

“We are not part of the family so there is that distance,” she says. “We are here with you at this important time. We are here to normalise the experience and we teach family members what to look for, and not to be scared. It’s emotionally taxing but not overwhelming.”

Now 68, Horn has noticed her own attitude to death evolving. “I think I have relaxed around it,” she says. “After seeing all I have about death I’m not so scared of dying. I have a limited amount of time left on this Earth and I will try to make the most of it. And not be too terrified.”

Most of all, she has realised that palliative nursing care is “a reciprocal relationship with patients and families”. She hopes “to find real balance in that, to learn from them as they learn from me. If I’ve learned nothing else, we can’t live a full and meaningful life without deep relationships. And that’s what I’m hoping for.”

Complete Article ↪HERE↩!

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Life and death lessons from my very best friend

Luis Carrasco and his dog, Penelope, at the top of Humphreys Peak, the highest point in Arizona, on Oct. 11, 2014.

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I have always been afraid of death. Not of dying, but of the pain of losing those I love.

I was so preoccupied with it as a child, that ever since I can remember, I said I wanted to be a doctor. This delighted my mom and dad to no end, especially when I said the reason was that I wanted to help people. The truth was I wanted to keep them from dying.

For 45 years, through emotional detachment and good fortune, I had mostly avoided that pain I so dreaded. Until a week ago, when my luck ran out and my wife and I said goodbye to our dog, Penelope. She was almost 15.

It’s fitting that having learned so much from her in life, that she had one last thing to teach me.

But before I talk about the end, let me tell you about the beginning. My wife and I had been living together for less than six months, having recently moved to Chattanooga, Tennessee, when she insisted that we get a dog.

Although I had a couple of pets growing up, they lived outside, and I felt little connection to them. In Mexico, having an indoor dog was unthinkable, it just wasn’t part of the culture. Penelope, as suits a proper Southern lady, would be raised differently.

Born Jan. 1, 2008, of a coonhound mother and a chocolate Lab father, she had a dozen siblings. About half of them were all white, the other all black. Six weeks after they were born, they barked and bounded in the back of a truck — a monochrome flurry of puppy energy — where Penelope and her brother’s mixed coats stood out.

My wife pointed at the pair, and I grabbed the male dog. She said she meant the female but that, “it was OK if we took that one.” As she always tells the story, with a tone that invokes the hand of providence, I apparently said, “No, no, let’s take the one you wanted.”

Thus, Penelope came into our lives, and, verily, I wanted to drown her in the bathtub.

We lived in a condo that shared walls with three other units and as she cried at night, what mattered to me most was that we were inconveniencing the neighbors. She peed inside the house, chewed anything she could get her paws on and demanded constant attention … for about a week.

Then, it felt longer, and now it feels shorter, but regardless, she very quickly settled into who she would be for the rest of her life: a sweet, relaxed dog who asked for very little and gave so much in return.

As I think about who I was then, and what I thought was important, I have a hard time understanding. I’m embarrassed at how sheltered I was and how even though I was 30 and married, I had so much growing up to do.

In those early days, Penelope’s biggest sin was forcing me out of my routine, out of my solipsistic comfort zone of not having to do anything for anyone else. Slowly, she not only made me a better person, but she opened my world in new ways.

Taking her for walks and going on hikes, her love for being out in nature was infectious. She took me from someone who thought twice about sitting on the grass for fear of an ant or two, to pushing through tick-infested bushes on the hunt for an elusive swimming hole. She really loved the water.

Being with her allowed me to get out of my head and enjoy myself. When I think of happiness, one of the images that always comes up is chasing Penelope, not a care in the world, as she ran around the hills of the Chickamauga Battlefield in Georgia. There are pictures, and they are silly.

Penelope sits by a lake inside Yellowstone National Park on June 1, 2021. (Luis Carrasco)
Penelope sits by a lake inside Yellowstone National Park on June 1, 2021.

She also helped me work on managing frustration, from her days when she was a rebellious puppy to her final months, when we dealt with the indignities that come with illness and old age. She could no longer walk by herself or properly control her bodily functions.

Penelope died on Aug. 20, and the pain of losing her has been at times overwhelming — emotionally and physically draining. There is a certain unreality to my days. Life had Penelope in it, so what is this now? My wife calls the whole thing surreal.

Yet, this is one more case of Penelope pushing me to grow up, to understand that death comes with pain, but it also comes with happiness. Even as tears still flow every time I think of her, afterward I am left feeling joy; blessed to have known her and for the time we shared.

I know someday the tears will stop, and the joy will remain.

Complete Article ↪HERE↩!

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Thanatophobia

— What It Is and What Causes It

By Mandy Baker

Thanatophobia is the fear of death or the dying process. Death or dying is a typical concern in society. However, those with thanatophobia worry about it more often to the extent it affects their daily lives. This article will define thanatophobia. It will also discuss the symptoms, causes, and treatments for this phobia.

What is thanatophobia?

The American Psychological Association defines thanatophobia as a persistent and irrational fear of death or dying. This fear can either focus on yourself or the death of loved ones.

Studies have shown that people with older parents often project their own fears of death onto them. However, the same study showed that older parents are less likely to have this fear themselves. Thanatophobia can affect anyone. However, it does appear to peak in middle age and then taper off in older adulthood.

The fear of death and dying is a natural presence in life. However, those with thanatophobia experience it more severely. People with phobias typically avoid situations that might cause them fear or anxiety. Research has shown that thanatophobia may increase a person’s avoidance when it comes to social anxiety.

What are the symptoms of thanatophobia?

The main symptom of thanatophobia is the psychological fear of death and dying. It is more than just your typical worry about death — a phobia generally affects your day-to-day life.

Many people with a phobia, such as thanatophobia, experience panic attacks. Along with an overwhelming feeling of anxiety, panic attacks tend to also include physical symptoms, which can include:

If you are experiencing thanatophobia, you may also find that you avoid certain social situations that cause you anxiety.

Learn more about panic attacks and anxiety.

What causes thanatophobia?

Health experts do not know what precisely causes thanatophobia. However, many believe that unresolved psychological or physical distress can play a major role in the development of death anxiety.

Thanatophobia appears to be more common in those who have:

  • low self-esteem
  • no religious beliefs
  • health issues
  • no sense of fulfillment in their life
  • little to no intimacy with loved ones
  • little to no determination to overcome difficulties in life

Other factors that may contribute to the development of thanatophobia are anxiety, depressive symptoms, and your belief about what happens after death.

How do you treat thanatophobia?

Though many phobias are curable, there is no one treatment for them. However, treatment typically includes a combination of:

  • therapy
  • medication
  • self-help techniques

Therapy

Psychotherapy is typically an effective treatment for phobias. One of the main types of psychotherapy that mental healthcare professionals use to treat phobias is cognitive behavioral therapy (CBT).

CBT is a type of therapy that focuses on helping you to change your behaviors and the way you think. It can help you learn and develop ways to help manage your phobia. One type of CBT, exposure therapy, can help manage phobias by gradually increasing the level of exposure to your fear. This then allows you to gain control over your phobia.

Medications

Healthcare professionals do not always recommend medication to treat phobias. However, your doctor may prescribe them on a short-term basis to treat the anxiety or other symptoms that typically accompany phobias.

Medications that your doctor may recommend include:

  • antidepressants
  • tranquilizers
  • beta-blockers

Self-help

Certain lifestyle changes may help you manage phobia symptoms, such as panic attacks. These changes may include:

  • getting regular exercise
  • eating regularly
  • eating a nutritious diet
  • getting enough sleep
  • reducing your intake of caffeine or other stimulants

Other self-help techniques include:

  • Relaxation techniques: Involve physical exercises that can help you relax and control your breathing.
  • Visualization: This combines relaxation techniques with a mental visualization of how you can successfully manage situations that cause you anxiety.
  • Self-help groups: This is a way to meet others with similar experiences, where you can share ways of coping with your phobias.

Summary

Thanatophobia is an intense and persistent fear of death or the process of dying. Typically, the anxiety that comes from a phobia will affect your day-to-day life.

People with phobias often experience panic attacks and avoid situations that may cause them anxiety.

Thanatophobia is treatable with a combination of therapy and self-help techniques. Your doctor may also recommend medications to help you manage symptoms such as anxiety.

If you feel you are experiencing thanatophobia that is affecting your daily life, contact your doctor or mental healthcare professional.

Complete Article ↪HERE↩!

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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.

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