The 3 things you learn after your mother dies.

— Love you, Mom. ❤️

by Carmel Breathnach

My mother died from ovarian cancer when I was a young child.

I’m in my late 30s now, and I’m still navigating this loss as I move through life. I’ve lived most of my life without my mother at this point, but I still miss her.

Here are three things I’ve learned since losing Mam:

1. Grief is not linear and is not solely expressed through tears.

Someone you love has been taken away from you, and your heart has broken into pieces. It’s natural to grieve, but we all grieve differently. Grief shows up in anger, sorrow, guilt, fear, and sometimes peace. It is unpredictable and, at times, exhausting.

I cried when my mother died, and I cried at her funeral when my school choir sang “Be Not Afraid.” I didn’t cry much in the immediate years that followed — not directly as a result of Mam’s death, but probably indirectly related to it. I certainly felt fear and anger and other emotions related directly to my loss.

Then sadness hit me like a ton of bricks one day when I was in my early 20s. A compassionate friend asked me about Mam, and as I hadn’t spoken about her to anyone outside the family, I broke down. It was a good release. The years have brought many stages of grieving.

Mother’s Day is never easy. Shopping for my wedding dress without my mother brought up intense feelings of loss. And sometimes it just hits me hard, on a regular day, yanking me out of my pleasant thoughts. A mother in a dressing room with her daughter, and they’re trying on clothes together, admiring how the other looks. The mother telling the daughter how beautiful she is.

Or a friend of mine, meeting her mother for lunch and Ican’t even imagine what that would be like! I can’t even fathom the amazing joy of having lunch right now with Mam! And then I get that heaviness in my chest and my stomach feels bad.

There’s no closure. My grieving stems from having loved so deeply. I have learned to tune into the emotions I’m feeling and to acknowledge the love, the pain, and the loss.

2. There are no replacements.

Nobody can replace your mother. We love our mothers in our own individual ways. Our mothers care for us when we’re sick, guide us in life the best ways they can, listen to us, and love us unconditionally.

For a mother, her child is always her first priority. And we sense this. We feel it. We know it, even if she doesn’t say it.

moms, daughter, parents, motherhood, love — I was told that she called me her little angel.

My mother was beyond happy when I was born a healthy baby girl. I was told that she called me her little angel. She carried me in her womb for nine months.

By the time I was born, we had that unbreakable bond, and she knew me from that first second of my existence. There’s never going to be a replacement for that person who loved me probably more than she loved herself. The joy in her eyes when she saw me, the warmth of her arms wrapped around me, the pain in her eyes when she had to say goodbye are all ways that I remember the deep love she had for me.

Mam prepared lunches for me every day to take to school, named muffins after me because they were my favorite, and surprised me with the best doll she could find when I was a few years old. She repaired my soft toys when they tore, taught me to have manners and sit up straight, wiped my eyes when I cried and my nose when I was sick.

Today I look for certain qualities in people. I look for a warmth, a radiance, a compassion and kindness that Mam had. I look for humor, a voice of sense, and strength of character. These are traits that my mother had. I find some of them in others.

But it’s never the same. There’ll never be another Mam. She’s irreplaceable on so many levels.

3. There are other people who will love you and other people for you to love.

Family members and friends will love you. They might not know exactly what your needs are or how to address them, but it’s worth reaching out to them. People struggle with different things.

Perhaps family members cannot love you or be there for you, and we may have to look around, let go, and reach further than we might want to in order to find the people who really love us, but there is someone out there to love you, and there’s someone in need of your love.

I was blessed with the kindest, most devoted father who gave my brother and me all the love and care we needed. My dad is a gem in my life. He calls me to hear my news and to share his. He worries when I’m not feeling good and is overjoyed when I’m happiest. He listens to my concerns and trusts me to make the right decisions.

My dad has helped me so much in dealing with my loss, through caring for me and loving me unconditionally. I have the most wonderful fiancé who loves me to no end. And I’ve friends in my life who I know truly care about me.

I’ve been blessed with a lovely family, but it doesn’t mean that I don’t reach out to others. I’ve reconnected with old friends after years of distance. I’ve discovered things I have in common with others and opened up to new friendships.

Having people to love is truly healing. I was a kindergarten teacher for 10 years. I loved the children in my care, and they showed me so much love in return. By spreading love, we invite more love into our lives. Try volunteering or working in a school or a hospital. There are people everywhere in need of love.

Our world is so big and yet so small now in this age of technology. We can reach out to others across continents.

Our mothers were the first to show us the true meaning of love. In honor of our mothers, let’s spread that love wherever we can.

Complete Article ↪HERE↩!

November 14, 2023November 13, 2023

I decided my sister should die after an accident

— Now I’m filming people’s last moments at Dignitas

Jon: ‘A Time To Die, my latest feature documentary, was not my idea, but when the production company approached me, I didn’t hesitate’

By Jon Blair

Fifteen years ago, I stood in a hospital room in France as doctors gave my much loved elder sister a sedative before removing the apparatus that was keeping her alive. A few minutes later she stopped breathing, and even as I write this all these years later, my eyes well up with tears. I miss her every day.

As she had gently trotted round a training ring, Hilary, then 66, had been thrown off the horse on which she was having the last of 10 riding lessons. She was wearing a helmet but the fall broke her neck at the highest point possible, her C1 vertebra. She survived, thanks initially to the teacher giving her mouth to mouth resuscitation until the paramedics arrived, but once she had been stabilised at the closest hospital, it became clear that she would require mechanical respiration with a tube through her neck for as long as she lived. In addition to being unable to speak, she would be tetraplegic, in all likelihood dying from pneumonia or some other infection within a few years at best.

Hilary, Jon’s sister, whose life support the heartbroken family decided to switch off

The doctors asked what we, her family who had gathered from around the world, thought she would want, since she was in no state to communicate her own wishes, and we agreed by a majority of three to one that what lay ahead for her was no life she would or could accept. We gave the go-ahead for them to switch off the machinery and in so doing, to end her life. This was not an assisted death as such, but there is no question that as a result of the decision we took that day, a few weeks later we would gather at a crematorium in north London for her funeral. In that sense, we killed her.

And here I am now, standing in a room at Dignitas, in an industrial estate on the outskirts of Zurich, filming the last moments of another woman’s life. It’s been a long, emotional journey and I can only hope it will be worthwhile.

A Time To Die, my latest feature documentary, was not my idea, but when the production company approached me, I didn’t hesitate.

I was aware of the ongoing debate around the contentious issue of whether the current law on assisting someone to die should be changed. As it stands, in England, Wales and Northern Ireland, helping someone to die can lead to a 14-year prison sentence. Last month, the Isle of Man took a step closer to becoming the first part of the British Isles to legalise assisted dying after its Parliament gave a second reading to an Assisted Dying Bill. In Westminster, Parliament has debated changing the law three times in the past decade, and in 2015, MPs voted against the legalisation of assisted dying in England and Wales.

Dan is getting his Dignitas paperwork in order – or as he calls it, ‘his get-out-of-jail free card’

Currently, if you help someone to end their own life, there will most likely be a police investigation. While the circumstances will be taken into account when determining whether it is in the public interest to prosecute, you will probably be interviewed under caution, your home may be declared a crime scene, and it can take months or even years of living with a jail sentence hanging over you for a decision to be taken. All of this at a time when you are probably in the midst of grief.

This has to be one of the most difficult, personal and emotionally trying programmes I have made in a 50-year career reporting on wars and making documentaries. It took me deep inside the lives and deaths of people wrestling with wretched choices. People like Dan, 47, a former music teacher now living with multiple sclerosis, who continues to compose music on his laptop using movements of his tongue and nose, which are picked up by his screen. Dan now lives back with his parents and is getting his Dignitas paperwork in order – or as he calls it, “his get-out-of-jail free card”.

We spent time with Di and Trevor, a couple whose plans for a far-flung retirement travelling the world were halted when Trevor developed motor neurone disease. Unable to speak or eat, and in constant pain, Trevor used an iPad to answer my questions. At one point, he held up the words: “Utter boredom, pain, both actual and emotional.”

Under the circumstances, it was really quite remarkable the freedom our contributors gave us to record their lives, and in some cases, their deaths, and I suppose that must say something about our having convinced them of our ethics, along with our promise to respect their wishes throughout, and our genuine concerns for their welfare.

We negotiated rare access with Switzerland’s best known assisted dying organisation, Dignitas, and through them we contacted their 1,300 UK members, some of whom had joined because they sympathised with the cause, others because they might want it as an insurance policy for use at an unspecified later date, and others because they had a more immediate desire for an assisted death. We considered how best to negotiate the ethical and moral dilemmas of what to show and what not to show, and in this respect we were guided not only by Ofcom’s strict regulations but more importantly, by our participants’ own wishes. 

Kim and Andy, a couple who met at her university in Manchester, got in touch and invited us to document their life since Kim’s diagnosis of progressive supranuclear palsy (PSP), a rare neurological disorder.

Kim, a fiercely independent woman throughout her life, was so appalled by her deterioration that she was adamant about wanting to travel to Dignitas. Now reduced to using words sparingly, she gave it to me straight: “I will take a drink. I will die – hopefully painlessly.” Right from the beginning, they were both extremely willing to have us follow them the entire distance, however it unfolded. Indeed, we genuinely didn’t know if Kim would change her mind until we filmed the family packing up the car. Even then she might have decided to come home, right up until the point she finally took the drink that would kill her.

I gained so much from witnessing the compassion, care and love between the people who allowed us in at the bleakest point of their lives. It’s not easy getting up in the morning to go to work knowing that in all likelihood there will be a moment when the tears simply can’t be stopped. So, why, at an age when most of my peers will have retired, did I do it?

I felt ultimately that the best service we could provide our audience with was to coolly and neutrally show examples of those most affected by the law as it stands now, while highlighting fairly and honestly what it is that those who oppose any change most fear.

Kim and Andy: both were extremely willing to have Jon follow them the entire distance, however it unfolded

And if we could pull back the curtain to show just what is involved practically with an assisted death, as well as what it is like if you don’t get one, or take matters into your own hands, that might just make a difference to their understanding of the issue.

Having heard from around 150 active supporters of assisted dying, we approached numerous opponents to hear their side of things. I was surprised by how few ultimately agreed to take part. The Archbishop of Canterbury was too busy, two noted palliative care professors at first seemed willing, and then essentially ghosted me. A high profile religious opponent who had organised numerous demonstrations against a change in the law was also too busy to talk to us. A GP who had sincere views against a change in the law based on her concerns for her largely Muslim patients was forbidden by the partners in her practice from giving us an interview. Another consultant was told by her hospital trust not to put her head above the parapet.

In spite of this, we wanted to let the audience decide which side they favour most. This debate is too often driven by anecdotes, in some cases quite horrific ones, which are brandished like weapons by the warriors embedded in the trenches of either side.

On this issue, you can’t have it both ways, but what you can do is try to walk a mile in another person’s shoes, and maybe that will help you decide what you think is right in a just society that cares for its citizens. 

Complete Article ↪HERE↩!

November 13, 2023November 12, 2023

Hospice Nurse Hadley Vlahos Has Seen Incredible Things from People Facing Death That Defy Medical Explanation.

— Here’s What It’s Taught Her About Life

By Stacey Lindsay

In her bestselling book The In-Between: Unforgettable Encounters during Life’s Final Moments, hospice nurse Hadley Vlahos writes the truth she sees in her job working with dying patients. “The one thing I can tell you for certain is that there are things that defy medical explanation and that in between here and whatever comes next, there is something powerful and peaceful.”

Alas, Vlahos still knows that “in between” and death are tricky topics. Death anxiety is real, she tells The Sunday Paper. But it is this angst that she hopes to dispel, both with her honest posts on social media (Vlahos has over 2 million followers on TikTok and Instagram combined) and in her book, in which she writes about all she’s witnessed and gained. As she says in a video post, “I found life again from caring for dying patients.”

Books on what those who are dying can teach us abound, and they share beautiful similarities in how we must grab the time we have and learn to embrace the beauty of passing on. Yet The In-Between is a book only Vlahos could write. In her captivating narrative, she layers between her accounts of people going to the other side, her own journey of facing poverty as a single mom, taking a chance in becoming a hospice nurse, and finding a Technicolor purpose—perhaps even more remarkable than she ever could have imagined.

A CONVERSATION WITH HADLEY VLAHOSYou write that people ask you about the subject of death often. What does this curiosity say to you?

I’ve been a hospice nurse for seven years now. And in the beginning, it was very hush, hush. You don’t talk about it. And I’ve noticed a huge cultural shift over the last two to three years since COVID, where people want to know. People realized how in the dark they were about what was going on, and they became hungry for knowledge. And it’s wonderful. Whenever you’re educated about something, it reduces the fear around it. I think everyone has that little bit of death anxiety, of course. Whenever we open up and talk about it, it makes it better.

You share these bone-chillingly incredible stories about things that happen to people as they are dying in hospice that, as you say, “defy medical explanation.” Many people connected with loved ones; in one story, Miss Glenda started talking to her deceased sister in the time leading up to her death. Tell us more about what you see.

We don’t learn in nursing school about people seeing deceased loved ones. So, whenever it first started happening, I thought it was a hallucination. Because that’s what I learned: People take medications, and then they hallucinate. And then I started talking to all my hospice coworkers and physicians, and I realized that they don’t believe that it is hallucinations. My first thought was maybe they’re all religious. But then I started being the one in control of my patients’ medication; I was the one who knew what they were taking and not taking. I would see the correlation between no change in medications, some patients not taking medications at all, and people with completely different religious backgrounds and diagnoses, and they were all having the exact same experience of their deceased loved ones coming to get them at the end. I started looking into it, wondering why this was happening and we don’t know why. There is no explanation as to why this happens and it is incredibly interesting to me.

There are a few different ones that happen. There is the seeing of deceased loved ones. There is also something called terminal lucidity, which is where people with dementia and Alzheimer’s will suddenly gain their memories at the end and be able to have conversations. I don’t witness it too much, but it is unbelievable to witness, and we don’t know why that happens either. The other one is what we call a surge of energy. That is where people at the end who have maybe been bed-bound for a while or have not been eating or talking much will suddenly be like, ‘I want to go into the living room and eat my ice cream and chat with my family.’ We don’t know why it happens, but it can sometimes give people a false sense of hope. And that is hard because loved ones will call me and say, ‘They’re doing so much better. I don’t even know if they need to be on hospice,’ when in reality, it usually means that they’re going to die very soon.

Going back to what we were talking about, whenever we educate people, they then know, oh, this could mean that my time is limited, and I need to enjoy this moment and take advantage of it.

This all sheds light on how we may force things on our loved ones who are dying, perhaps food or water, for instance, when they no longer need it. It is well-intentioned, but it speaks to a need for more understanding. What do you wish people who have a loved one who is dying knew?

I wish people knew that patients know that they’re dying. A lot of times, I watch this dance where someone is on hospice, or they’ve had terminal cancer for years, and no one wants to talk about it. Everyone wants to pretend that it’s not happening. What they think they’re doing is they are being kind by not saying, ‘I know you’re going to die one day,’ and not bringing up a difficult topic of conversation. But in reality, what I see with a lot of patients who confide in me is that they feel alone. They have all of these big feelings and thoughts and feel like they can’t talk to anyone about it because people change the subject. So I always tell family members, if your loved one brings it up, please talk to them and don’t try to change the subject. I know it’s uncomfortable. I know that the family members are trying to do the best thing, and they think they’re doing the right thing, but sometimes it leaves patients feeling alone.

You worked as a nurse in a traditional hospital setting before transitioning to hospice. How you speak of the hospice community paints a picture that it’s holistic and more harmonious. What things from the hospice world do you wish could be imbued in the medical world?

I have been what is called a case manager. If you’re in hospice, you have a registered nurse case manager. That means that I had patients assigned to me that were my responsibility. So, if a physician wanted something, the doctor had to come through me. If the chaplain wanted something, he had to come through me. If anyone wanted anything, they would have to come through me. I know not only what medications my patients take but also what prayers they’re saying with the chaplain and what conversations they’re having with the social workers. That kept things very cohesive.

A lot of patients tell me, and I’ve seen this from my own experiences, that it can feel like your cardiologist is telling you to do one thing and another doctor is telling you to do the opposite. No one in there’s saying ‘Okay, the cardiologist said this, let me call them.” Because so often, patients don’t know how to have the medical conversations that need to be had. There needs to be that one person. Right now, the only case managers we have in the hospital-type setting work for insurance companies, and that can be a gray area, as they’re usually on the phone and not caring for the patient and laying hands on the patient. So, I think other areas of medicine could learn from that approach, making it holistic.

You’ve said many times how positive of an experience death has been for so many of your patients. What can that teach us about life?

It can really teach us how to live a good life. Truly. I think that whenever we recognize that our life is short, and that’s such a cliche statement, but whenever we realize that, Okay, one day, I’m going to be on my deathbed. I see my patients, and I think, ‘That’s going to be me one day.’ So am I doing what I want to do every day so that when I’m in this position one day, I don’t have regrets? Or I can look back and do my life review with my own nurse and be like, ‘Yeah, I really went for it. Maybe I failed a little bit, but I really went for it. I really lived life.’ I think that that’s a really beautiful thing to be able to do.

When it comes to life wisdom, regrets, and looking back, what are some things you’ve heard from people as they pass on?

They tell me a lot! ‘Eat the cake,’ which I put in my book, is one of my favorites. I think about it all the time. But one thing that people have told me a lot, which I surmised from all of them, is that they lived for other people instead of themselves. That can mean a bunch of different things. That could be buying a new car because the person on the street has a new car. That could be choosing a career because that’s what your parents or society expected of you. Those are the regrets I’ll hear: They wish they would have just lived for themselves instead of others. Whenever I first heard ‘Don’t try to keep up with the Joneses,’ as someone said to me, I first thought the best way to live is to have no possessions and live a very low-key lifestyle. But as I started talking to more people, I realized it was more about: If you buy this house, is it because you love the house and you love coming home to this house every day? Does it make you happy? Or if you’re really into cars, does that car bring you joy? So I’ve realized that ‘Keeping Up with the Joneses’ means buying stuff for other people, not yourself.

What is the “in-between”?

It has a few different meanings. The main one is that I feel I’m with patients in between this world and whatever comes next. We get that little window of patients between worlds, and they seem to go back and forth. It’s my favorite period of time. I love being part of it.

On a more personal life side, the in-between for me was getting comfortable in the uncomfortable and being able to say, ‘Maybe I don’t have the answers, or maybe my life isn’t exactly how I want it to be, but I’m still finding happiness in this in-between phase.

Your book has been wildly successful. What did you hope people would take away as you wrote it? And what has surprised you now that it’s in so many people’s hands and ears?

I hoped that people would have less death anxiety. Whenever we turn on the TV, we see this tragedy—all the time. There was just a study that came out about how 80 percent of what we’re shown is just traumatic deaths. And I’m aware that that is not the reality for the majority of people. So, I was hoping that people would understand that you’re likely going to die in a slower way. And I think that that helps with people’s death anxiety. That was always my goal.

I was very shocked just how much people loved it. And I was very shocked at how much people related to me on a personal level. I was nervous. I quite literally wrote whatever my thought was. I put myself back in that moment in time, and whatever my thought was, whatever I was thinking, I just wrote. It was extremely honest, and I was a little bit nervous about it. I have been shocked by the messages, handwritten letters, and people just saying, ‘Thank you. I’m really glad to see someone else go through these things.’

And then how many ‘Eat the Cake’ tattoos! I think I’m up to 17 tattoos that I’ve seen. I love them so much!

Hadley Vlahos is a registered nurse specializing in hospice and pallative care. She is known as “Nurse Hadley” to her over two million followers online. Her first book, The In-Between: Unforgettable Encounters During Life’s Final Moments, is a New York Times bestseller. Learn more at nursehadley.com.

Complete Article ↪HERE↩!

November 12, 2023November 11, 2023

Finding Comfort and Peace with Hospice Care at End of Life

— What I find with some regularity is that people who are dying really do want, need and desire to talk about it.

By Rabbi Joseph H. Krakoff

Hospice — or as it is sometimes referred to — the ‘H’ word — can be a very scary, anxiety-producing proposition. And while that certainly makes sense, it is also a compassionate place to go for care that offers comfort, peace and love. As the end of life draws near, hospice is poised to meet every individual where they are at physically, emotionally, psychologically and spiritually.

What I have discovered over the last decade of visiting patients who have chosen hospice care is that even when they were reticent at first, they are ultimately grateful to have the tremendous support of a team of nurses, aides, social workers, clergy and volunteers who are there for them around the clock.

I can’t help but think back to an experience I had several years ago on a patient visit. I went to see an 85-year-old man who had been diagnosed with end-stage cancer. His adult children had made a unanimous decision not to tell their father that he was dying. On my first visit, the three siblings greeted me in the foyer of the man’s home to firmly instruct me not to tell their dad that he was on hospice. Naturally, I accommodated their request. Then, on my third visit, without warning, the man asked his children to leave the room because he wanted to speak to me alone.

He asked me to sit down next to him on the chair by the bed and said the following: “Rabbi, my family thinks that I don’t know what is going on. But I do! I recognize that I am dying and know I am receiving hospice care. I have lived a very good life. I am grateful and know my time is short. I have come to terms with my demise. But what I struggle with the most is that I really want to talk with my children about the fact that I am dying, but they won’t hear of it. Please help me help them. I need to get my affairs in order. Even more, I want the chance to say goodbye to each family member and express my gratitude and love for them. Rabbi, please help me. I am desperate.”

This is not an uncommon occurrence. What I find with some regularity is that people who are dying really do want, need and desire to talk about it. And so often, it is the hospice experience that plays an essential role in bringing families together to have these all-important conversations.

The word hospice itself originated in medieval times, a derivative of the Latin “hospes” meaning host or guest. Hospice as a concept appears initially in the mid-1800s to describe caring for dying patients and is based on the model created by Mrs. Jeanne Garnier, the founder of the Dames de Calaire in Lyon, France. The Irish Sisters of Charity adopted it when they created Our Lady’s Hospice in Dublin, Ireland, in 1879 and then again when they opened St. Joseph’s Hospice in Hackney, London, England, in 1905. It wasn’t until 1974 though that the first hospice was established in the United States.

Today, hospice is available through Medicare to critically/terminally ill patients who are declining and expected to die within six months, although they often live longer. The individual agrees to forgo any kind of aggressive medical intervention including curative treatment. The vast majority of hospice is covered by Medicare, though some is paid for by private insurance, Medicaid and the Department of Veterans Affairs. Hospice agencies develop a specific care plan for each patient to treat the symptoms of the person’s illness and are on call 24 hours a day, seven days a week.

One of the biggest misnomers about hospice care is that accepting a referral to hospice means that the individual is “throwing in the towel” and giving up on life. For this reason, it is not unusual that people may be discouraged by family members. But when the medical team determines that there is nothing else clinically that can be done and the terminally ill person is psychologically ready, hospice can be the best and most humane choice for reducing physical pain, maximizing emotional well-being and enhancing spiritual peace. It is not unusual to see someone on hospice actually begin to feel better due to the layer of care provided by the hospice team.

In choosing hospice, the individual has made the decision, in the event of a crisis, not to go to the hospital or to call 911. Rather, all phone calls for help are made directly to the hospice organization. And if, for whatever reason, a person changes their mind, they always maintain the authority to revoke their hospice benefit and revert to calling 911, going to the hospital or resuming treatment.

While we can be certain that there will always be a modicum of discomfort about uttering the ‘h’ word, the truth is that hospice care wholly focused on comfort and peace is a true gift. At JHCN, we take pride in meeting each person where they are and thoughtfully addressing their whole range of needs in an honest, caring and loving way. Most of all, we provide the unique opportunity — through our social workers, clergy, volunteers and Life Enrichment specialists — that when the body can no longer be healed, we focus on the holy responsibility to assist in healing the spirit and the soul.

Complete Article ↪HERE↩!

November 11, 2023November 10, 2023

Can magic mushrooms help patients dying in hospice care?

— Dana-Farber researchers want to find out.

From left to right: Dr. Alden Doerner Rinaldi, Dr. Caitlin Brennan, Dr. Zachary Sager, Dr. Roxanne Sholevar, and Dr. Yvan Beaussant pose for a portrait inside one of the rooms at the Care Dimensions “Hospice House” in Lincoln where dying patients can receive synthetic psilocybin as part of a small trial by researchers at Dana-Farber Cancer Institute.

By Jonathan Saltzman

Sixty years after Harvard fired Timothy Leary over his experiments with psychedelic drugs, a hospital affiliated with the university has reopened the door on such research by testing whether hallucinogenic mushrooms can help dying patients face death.

The small trial by researchers at Dana-Farber Cancer Institute’s Psychedelic-Assisted Therapy program is the first to test synthetic psilocybin — the active ingredient in so-called magic mushrooms — in patients in hospice care, according to experts. The patients have cancer, heart disease, and other terminal illnesses and six months or less to live.

The pilot study, which combines a single dose of the psychedelic drug with talk therapy, began in 2022 with the approval of the Food and Drug Administration, and has so far provided psilocybin to eight patients, six of whom have since died. The trial, which is expected to be completed next year after two more patients receive doses, is gauging how well dying patients tolerate the drug and whether it eases their “psychological and existential distress.”

It is only the second study of psychedelics at a Harvard-affiliated institution since the school fired Leary as a psychology lecturer in 1963 for unethical scientific practices, according to researchers. McLean Hospital, a psychiatric teaching hospital of Harvard Medical School, began testing another psychedelic, MDMA, or ecstasy, on cancer patients with anxiety in 2006. But controversy derailed the study, which ended without publication of findings.

Dr. Yvan Beaussant, a palliative care physician at Dana-Farber who is leading the new trial, said he hopes it shows whether psilocybin — used for centuries by the indigenous peoples of Mexico and Central America — along with talk therapy can relieve “demoralization syndrome,” a clinical term for the hopelessness and meaninglessness often experienced by hospice patients.

“These people are facing the most challenging phase of life, dying,” said Beaussant. The eight psilocybin recipients reported varying reactions to the drug, he said, but many later felt a renewed sense of purpose and deeper connections to loved ones. To confirm those benefits, Beaussant said he hopes to launch a larger trial.

Dr. Yvan Beaussant, a palliative care physician at Dana-Farber who is leading a small trial testing synthetic psilocybin — the active ingredient in so-called magic mushrooms — in patients in hospice care.

Psilocybin, like LSD and other psychedelics, is illegal to buy, possess, or distribute outside of a clinical trial; in 1970 the Nixon administration placed it on the federal government’s list of Schedule One substances, on par with heroin.

But over the past 15 years or so, researchers have tested psilocybin’s potential therapeutic benefits, particularly for people with severe depression and anxiety. Some experts say a growing body of evidence shows that under the right circumstances, psilocybin can improve the mood of patients much faster than traditional psychiatric drugs or talk therapy.

Dr. Roxanne Sholevar, a Dana-Farber psychiatrist and fellow investigator in the psilocybin trial, said she was profoundly moved by the experiences of two terminally ill patients whom she counseled and stayed with during mind-altering trips.

One was a 47-year-old woman who had withdrawn emotionally from her two teenaged children while facing death from pulmonary fibrosis, a progressive lung disease. After taking the drug, the woman reported a mystical experience during which she came upon a primordial river where life began, Sholevar said.

She told Sholevar afterward that she realized that all living things had come from the river, and, like them, she would return to it when she died. That helped allay her depression and anxiety and led her to leave a videotaped message to her children saying she would always be with them.

The other patient, an 81-year-old man who was a devout Catholic, felt life was meaningless because of his impending death, and the death of his wife several years earlier. The man, who also had pulmonary fibrosis, took the capsule containing psilocybin and found himself transported to a dark cathedral where he encountered an “ominous presence” that scared him, Sholevar said.

The researchers summoned a hospice chaplain to comfort him, and the man’s agitation faded. He later told Sholevar that he realized that the purpose of his remaining days was to receive and share God’s love.

“These shifts that I’m describing are the type of things that take years of psychotherapy,” said Sholevar. “I am stunned and reverent and just deeply curious about what we are seeing here and how we can develop this to further enhance its safety and rigor.”

Sholevar and Beaussant said the study could also have a side benefit: repairing the reputation of Timothy Leary.

Timothy Leary caused a furor as a lecturer in clinical psychology at Harvard in the early 1960s when he was studying psilocybin, which was legal at the time.

Leary caused a furor as a lecturer in clinical psychology at Harvard in the early 1960s when he was studying psilocybin, which was legal at the time. Faculty members and administrators complained that he was giving hallucinogens to students and sometimes taking the substances with people he was studying. Leary contended that psychedelic drugs, including LSD, could transform personality and expand human consciousness.

After his firing, Leary went on to urge young people to “turn on, tune in, drop out,” becoming an oracle to hippies and a publicity-seeking crackpot in the eyes of critics. President Richard Nixon allegedly described him as “the most dangerous man in America.”

Still, the psychologist helped to pioneer the importance of “set” ― mindset — and “setting” in the safe use of psychedelic drugs, said Beaussant and Sholevar. That insight is crucial to the team of researchers who guide terminally ill patients through mind-altering trips.

All the participants are in home hospice care provided by Care Dimensions, a hospice provider in Massachusetts. The patients must undergo two counseling sessions at home with a team of two therapists who prepare them to take psilocybin and discuss what they hope to get out of it. Patients are advised to “trust, let go, and be open” to the experience “even if it’s intense or uncomfortable,” Beaussant said.

“People might have blissful experiences,” he said, but others have “very challenging” trips. “Sometimes what might come up is a sense of what you’ve lost, past trauma, painful memories,” he explained. “The idea is not to avoid that.”

Patients undergo two more therapy sessions at home after using the drug to discuss how the experience affected them and how that might change how they live the rest of their lives.

The setting for the trips is the 18-bed Care Dimensions Hospice House, located on 12 wooded acres in Lincoln. Patients typically sit on a recliner or lie in a bed in a room with a patio and a view of landscaped gardens. They wear eye masks to focus their attention inward. Donning headphones, they listen to soothing music on a playlist synched to the onset, peak, and fading effects of the psychedelic experience, which typically lasts about six hours.

At least one researcher stays by the patients’ side, checking their heart rate and blood pressure, both of which typically rise modestly under the influence of psilocybin. It’s critical that patients feel safe.

“The idea of set and setting — we know these factors are really important in shaping the nature of the experience and its potential therapeutic value,” Beaussant said. “That’s work Timothy Leary introduced.”

A curled-up Timothy Leary reads a book in 1961.

The notion of rehabilitating Leary’s reputation may seem improbable. But so is the surging interest in the potential benefits of hallucinogens to treat a variety of maladies, from depression to post-traumatic stress disorder to obsessive compulsive disorder — even to irritable bowel syndrome.

“We call it the psychedelic renaissance,” said Rick Doblin, a psychedelic drug activist and founder of the Multidisciplinary Association for Psychedelic Studies, who lives in Belmont. His organization hopes to win FDA approval in mid-2024 of MDMA as part of a treatment for post-traumatic stress disorder.

In recent years, the country’s top medical schools have raced to set up psychedelic research centers, and investors have funneled millions of dollars into start-ups exploring the therapeutic potential of such compounds.

Prominent medical schools supporting psychedelic research include Johns Hopkins, NYU and UCLA.

Massachusetts General Hospital, another Harvard-affiliated teaching hospital, established the Center for the Neuroscience of Psychedelics in 2021 to study the substances. It is planning trials of psychedelics for maladies ranging from rumination to fibromyalgia but hasn’t started testing the compounds yet.

Michael Pollan, author of the best-selling 2018 book “How to Change Your Mind: What the New Science of Psychedelics Teaches Us About Consciousness, Dying, Addiction, Depression, and Transcendence,” was startled to hear about the Dana-Farber study.

“That’s a big deal because of Harvard’s history with psychedelics and the institutional embarrassment over the Timothy Leary episode,” said Pollan, who teaches creative writing at Harvard but is on leave this semester. “I would have thought they’d be the last university in America to venture back into the water.”

Pollan was not surprised, however, by the scientific interest in psychedelics to treat mental disorders.

“The mental health care system is broken,” he said, and clinicians are “desperate for new tools.”

A bed in one of the rooms at the Care Dimensions "Hospice House" in Lincoln where dying patients can receive synthetic psilocybin as part of a small trial by researchers at Dana-Farber Cancer Institute. — A bed in one of the rooms at the Care Dimensions “Hospice House” in Lincoln where dying patients can receive synthetic psilocybin as part of a small trial by researchers at Dana-Farber Cancer Institute.

Complete Article ↪HERE↩!

November 10, 2023November 9, 2023

A Guide to Dying

— We Talked to 3 Death Doulas

As Halloween, Day of the Dead, and All Souls and Saints Day have passed, we reflect on death and the afterlife. In fact, it’s all consuming. It’s impossible to not think of our loved ones we have lost or those we may lose when visiting grave sites or setting up an altar with candles.

By Penny Min

Whether religion comes into the conversation or not, death is a complex topic to discuss. The dying process is a mystery for most people, and shielding away from “the end” is an uncomfortable reality that many aren’t ready to face. Oftentimes, most people ignore it alltogether.

Avoidance, however, doesn’t always work when it comes to the inevitable — preparing for one’s departure from the world. And sometimes, people just need a little help, guidance, and comfort to ease into this next transition.

That’s why having a death doula assist during the latter stages of life is increasingly becoming a popular business and option for those heading toward the light.

A “doula” is a term commonly employed to describe someone who supports a pregnant woman during childbirth. The name is derived from the Greek word “doulđ,” which means “slave or female servant.” More recently, the definition of a doula has been expanded beyond the introduction to life and includes someone who provides support to those who are nearing the end of their lives.

What does a death doula do?

The tasks performed by death doulas can change depending on the needs of the person they are currently assisting. A death doula may concentrate on performing menial duties so that others who are close to the dying person can concentrate on spending meaningful time with them. They may assist with funeral rites and ceremonies, such as ensuring that the proper cultural or religious customs are observed during the dying process and that the deceased’s body is appropriately handled after death.

Listening to the dying person and others close to them while providing nonjudgmental emotional and spiritual support can be a significant portion of the death doula’s job description.

To learn more about this compassionate role, we asked three death doulas about their difficult but rewarding profession.

Interview questions have been edited for length.

Alysha Suryah, Baltimore

Photo by Elizabeth Kopylova

Q: What kind of training goes into being a death doula?

A: While end-of-life doulas have been around for years, the process for entering this space as a professional is somewhat unregulated. There are a plethora of opportunities to get out in the community to receive training in specialized topics, like rituals and communication, as well as the business side of this role; however, certifications are not required to provide this level of care to clients or even within your community — there are even opportunities to be a volunteer doula at hospice centers or other related organizations.

The only thing needed to be a doula is a willingness to provide compassionate care and a deep commitment to supporting individuals and their families during this potentially life-changing journey. It’s really a role rooted in humanity, and while formal training and certifications can certainly enhance your skills, the essence of being a death doula is the unwavering dedication to being there for others when they need it most.

Q: What are some of the challenges of the job?

A: One of the primary challenges of this role is the emotional toll it can take, even if one is vigilant about protecting their emotional well-being. Death is an intensely personal experience for everyone, and as an end-of-life doula, you have the potential to build deep, meaningful relationships with the individuals you serve. Bearing witness to their grief, pain, and loss, as well as the grief of their families following their passing, can be emotionally taxing at times. Sometimes, the relationships formed with clients are so close that you find yourself sharing in their sense of loss. It necessitates practitioners to have a considerable amount of mental fortitude to provide unwaveringly compassionate care consistently.

In addition to the emotional challenges, end-of-life doulas also encounter practical challenges. Effective communication, including facilitating difficult conversations, is a key aspect of the role. Irregular hours, often involving evenings and weekends, demand flexibility. Additionally, managing multiple clients simultaneously can increase the risk of burnout, emphasizing the need for self-care and support. Balancing the emotional demands and the practical challenges of the role, end-of-life doulas exemplify resilience in their commitment to providing support while navigating the complexities of end-of-life journeys.

Q: Is a death doula brought into hospice, or is it home care?

A: The professional role of a death doula is remarkably diverse, shaped by an individual’s strengths, experiences, interests, and the specific needs of their community. Death doulas can be found in both hospice and home care settings, and their responsibilities closely align.

In hospice settings, death doulas collaborate closely with hospice teams to provide comprehensive support to patients and their families. Their mission typically involves offering emotional support and guidance, contributing to legacy projects, and assisting individuals throughout the end-of-life journey. Their role seamlessly integrates within the hospice care framework. Conversely, some death doulas choose to operate within the context of home care. In this capacity, they provide support to individuals who have decided to receive end-of-life care in the comfort of their homes. Within this environment, death doulas can have a higher degree of flexibility compared to the structured relationships found in hospice settings. Their services encompass companionship, emotional and/or practical support, as well as guidance and education on end-of-life decisions. They also continue to provide support to clients’ families, guiding them through the dying process in a familiar environment.

Catherine Durkin Robinson, Chicago

Photo courtesy of Catherine Durkin Robinson

Q: What led you to become a death doula?

A: I’ve been doing death doula work for a long time. Raised Irish Catholic, I was at my first “Last Rites” when I was five, and thought everyone was raised to believe that death is a natural part of life. I was much older when I realized that most of my friends were shielded from death and quite frightened by it. So I’d been their “death buddy” for years. I was also a longtime volunteer for two hospice organizations. It was around the time of the pandemic when I realized my 30-year career as a political organizer was coming to an end. I wanted to continue advocating for people outside the political system (it’s gotten quite toxic out there.) Someone said that I was already doing this work, so I went back to school (University of Vermont) and opened up my practice.

Q: What are some of the biggest challenges in your line of work?

A: I think one of my biggest challenges is helping people to see death in a different light. We can be awed by its mystery rather than frightened by it. Another challenge is helping people understand that plant medicine, or psychedelics, can reduce anxiety and fear around end-of-life. People are afraid of that idea, too. So, I’m pioneering in this space and need to remember that and be patient as I go.

Q: I’m interested in your experience in the polyamorous space. Can you discuss this?

A: Yes, there are lots of challenges about the end of life for different families. This is especially true for non-traditional families, like polyamorous or anyone on the LGBTQ+ spectrum. As someone with training and lived experience in this realm, I’m happy to advocate for families and help healthcare providers to better support them when needed.

Laura Lyster-Mensh, Washington D.C.

Photo by Isabella Carr

Q: How long have you been assisting others as a death doula?

A: I have always been interested in the processes of birth and death. At my stage of life, there is more death, and I wanted to explore how to be a better caregiver, supporter, and mourner.

I started my training in late 2021 and have been volunteering with dying people and doing death awareness work since early 2022.

Q: How has becoming a death doula changed your perspective on death and dying?

A: I’m less afraid of dying. I am able now to separate dying from death, and that is quite helpful.

Q: Can you tell me about the death positivity programming at the Congressional Cemetery, where you are a death doula?

A: Congressional Cemetery is taking a bold and active stance on this programming. Despite a very busy calendar with so many activities going on, they make space for these special events and gatherings. It’s innovative, and the community of death-positive participants is growing and supporting one another. It’s an honor to be facilitating these programs.

People stop me, often, when I’m walking around the cemetery and say, “Aren’t you the death doula?” These are the start of some of the most interesting and enriching conversations I’ve ever had. It is amazing how much people want to talk but don’t know where to start.

Professional Care Management. End-of-Life Doulas.

Complete Article ↪HERE↩!

November 9, 2023November 8, 2023

As a death doula and professor who teaches about dying, I see a need for more conversations about death

Students in a death and dying class have the opportunity to become a ‘death ambassador,’ in recognition of their new level of awareness that could help foster healthy conversations about death and dying.

By Susan Srigley

A growing number of folks may have heard of the death-positive movement, death cafés or death-friendly communities — each of which are animated by the understanding that welcoming our own mortality could improve the quality of our lives.

There is truth to these claims. Both as a person who has taught courses on death, dying, and spirituality for more than 20 years, and as a death doula, thinking about dying and working closely with the dying has fostered in me a deep appreciation for what it means to live well and meaningfully.

However, my university students have often told a different story. Both informally in class discussions, and also in a public presentation about why death education matters, for the online Lifting The Lid International Festival of Death and Dying, many have expressed how their learning with me signals their first times talking about death.

When I hear this, I am aware of how our society needs to do a better job at nurturing more conversations about death, and building communities that support people navigating questions surrounding death and dying.

Denying death

The easiest way to exile death from our conversations is to label it “morbid,” ensuring we never need speak of it.

My first lecture in every death class begins with a discussion of the pervasiveness of death denial in dominant modern western culture.

I ask my students: “How do people react when you tell them you’re taking a course on death?” Invariably they have heard things like:

“That’s so morbid!”

“How depressing/dark/strange/weird!”

“Why would you want to study that!?”

My courses are designed to introduce students to the study of death through history, culture, religion and spirituality, ritual, literature, ethics and social justice

We explore social and cultural barriers affecting how services are structured and the implications for end-of-life care. For example, racism and inequities in health care and other institutions contributes to dangerous disparities in treatment and life outcomes, influencing Black, Indigenous and racialized communities’ collective trauma surrounding dying and death.

Students read and learn about how humans have understood and interpreted death, as well as some of the pressing social issues that we face in contemporary death care and practices.

Inspired by the work of Dr. Naheed Dosani, palliative care physician and health justice activist, I now include a class on palliative care for people experiencing homelessness and dying in the streets.

Anishinaabe death doula Chrystal Toop, a Member of Pikwàkanagàn First Nation, also visits my class to speak about compounded trauma of death and collective grief experienced by Indigenous Peoples, and why she created her own Indigenous death doula training to reclaim cultural teachings.

I also bring what I have learned as an end-of-life companion from hours sitting with and listening to people who are facing their own death or the death of those they love.

The gentle skills learned there are discernment, attention and compassion. As students reflect on what they will take with them from the course, they perceive the value in this kind of experience I bring to the classroom as much as in an article on palliative care and its history.

Negative consequences of denying death

My courses on dying and death have always drawn students from other humanities programs like English, fine arts and history. But over the years, more students from the professional programs, such as nursing, criminal justice and social work are enrolling.

While students’ professional programs — for example, in nursing or social work — seek to address various topics surrounding aging, trauma, death or end-of-life care in varying ways, students also need opportunities to think about their own mortality and, to cultivate some self-awareness in order to be present for others experiencing death and dying.

Some of my nursing students raise questions like: How do they talk to the loved ones of patients who are dying? What should they say?

These questions are hard enough when death is expected. They are exceptionally difficult when it isn’t, when the death is of a young person, a child or a baby.

New level of awareness

Students also express their disappointment and confusion because what they face in the aftermath of death and loss is often isolation and solitude.

While research about how to support children and young people navigating death amplifies the need for open and sensitive discussion, some students, especially white, middle-class students, speak of experiences of having been shielded from death by those who thought shielding them was the best way to protect them from fear and anxiety.

Simply providing the safe space to begin to have these conversations goes a very long way towards assuaging their fear and grief.

In part this is because supporting the passage of life to death, and supporting grief, is (or should be) a collective experience.

Community death care is everyone’s business, and while awareness of our own mortality is an important part of that, awareness and activism around racism, violence and injustice in end-of-life care is essential.

Death ambassadors

Figures like Dosani are making social media outreach part of their teaching and care practices. In recognition of the importance of creating death supportive communities, I also started an Instagram account, @death.ambassadors, to chronicle my death teaching.

At the end of each death course, I offer students the opportunity to be a “death ambassador,” in recognition of their new level of death awareness that could help to foster healthy conversations about death and dying in our culture.

Some of my students have also created their own death-awareness social media accounts, and found themselves supported by a death-positive community of educators, end-of-life companions, funeral directors and death doulas.

It is a universal truth that one day we are all going to die and that means we all have a serious stake in death education.

When it’s your turn, or the turn of someone you love, don’t we all need people who have considered how to support us in navigating dying and death? Let’s do the work to make that a reality for everyone.

Complete Article ↪HERE↩!