MAID – With All Due Respect

One instance of serendipity in exploring “death” as my One Word for 2026 is my retirement community’s simultaneous decision to host a 13-session, yearlong program on death and dying for our residents. The timing was ideal for me. The program provides the practical and social perspective for my emotional and spiritual probing.

I’ve been so impressed by the presenter’s sensitive and comprehensive treatment of end-of-life matters and planning that I asked if she would be willing to talk with me in depth about how she got into this line of work and what it means to her. She obliged, and after a lively hour together, I ended up with a ten-page interview transcript, which I have distilled into this blog post.

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“You’re going to die. Why not die well?” asks the headline on the home page of Leona Oceania’s website, Die Well Death Education.

Good question. If we must die, who doesn’t want to die well? And what might dying well look like?

If anyone can make learning about death, dying, and our options for a good death downright compelling, it’s Leona. Previous attempts to discuss human mortality in my community had been poorly attended, and the conversation shy and stilted. However, this time, from the start, Leona packed the room.

Her appeal, at least for me, and I suspect for others, is threefold: she knows her stuff and is an eloquent communicator; she’s passionate about her mission to educate; and she sets a frank and open tone that emboldens her audience to ask questions they have not previously dared ask and discuss topics they have formerly avoided.

Like many others zealous about their vocations, Leona was awakened and inspired at a young age by a deeply personal experience that set her on the path to the work she loves. Though she had always been fascinated by death and puzzled by others’ unwillingness to talk about it, her biological father’s death from lung cancer in 2003 was her wake-up call. In her words:

“He was getting all the treatments, and it was not benefiting him in any way. I knew a little about hospice, and that it was a beneficial thing, so I suggested it and got a very negative reaction initially from the rest of the family. Ultimately, though, he did end up at home in hospice, and it was an amazing experience for everybody, though it was sad and overwhelming. He was young, only 54 when he died.

“I remember the critical moments that really set me on this path. He had a hospital bed in his living room, and his five brothers and sisters, my half-sister and I, were there. It was just the family in and out, but people were staying there and being with him. Eventually, he was unresponsive for about two or three days and was obviously getting closer to the end. It was January, and it just kind of organically happened that one of my uncles built a fire in the fireplace, which was right at the foot of his hospital bed. We all came into the room, mostly because the fire had been made, and we were sitting around. Wayne, my biological father, hadn’t been conscious for days. Suddenly he opened his eyes and looked directly at every single one of us. And then he closed his eyes, and he died. Wow. It was just amazing. It was sad, overwhelming, but also incredibly beautiful. I had never experienced that before, and it set me on the path to learning more about death. It was a pivotal experience. Once I started sharing about it and asking questions, I learned that others had similar experiences.”

Shortly after this occurrence, her grandfather, who knew of her interest in death, alerted her to the death café movement, and she began attending one in Portland, Maine. Her enthusiasm and desire to learn caught the attention of the Portland café’s founder, who, when she was moving in 2019, asked Leona to step in as facilitator. Seven years later, the café is still going strong, and Leona is still facilitating it and others in Maine. From the cafés, she learned about the End-of-Life Doula movement and signed up for online training. Things came together at the beginning of COVID in 2020 when she was laid off from her regular job and had extra time to devote to doula, home funeral guide, and life legacy training, all online. She had become a hospice volunteer just before the pandemic began, so she stayed in touch with her client through letters during the lockdown.

Once COVID lifted, she decided to dip her toe in the water to see whether a community-based death education program might be of interest. Through a colleague on the Funeral Consumers Alliance of Maine board, she contacted Portland’s West End Neighborhood Association and offered a program. It went well, so she offered another at her local library in Cape Elizabeth, then at the Scarborough Public Library, and she was on her way. After that, instead of convincing groups to host her, organizations recruited her. The Die Well Death Education brand was launched, and her programs are well received and well attended, with highly engaged participants.

Last year she presented one hundred programs, and this year she already has about 100 lined up. I asked Leona if this has become a full-time job, from which she earns a living. Her answer was halting: “Am I doing this full time? Yes, but I am still doing my regular job as well…Has this been, how do you say, lucrative? No.”

You see, Leona strongly believes the program must remain free for attendees.

“There are a couple of reasons for that. A, it’s hard enough to get people to talk about death without charging them money for it. And B, once you charge money, it seems to change the whole dynamic into something I don’t really want it to be. And then it also immediately excludes a whole bunch of people that need the information just as much as anybody else. So that’s not a very good business model. Most of the venues I present at are libraries or places already operating on a limited budget. So, even what I ask for as a fee is a stretch for them, but what I get for a fee doesn’t even scratch the surface of materials.”

Leona provides a purple folder of materials for each participant filled with information essential to preparing an end-of-life plan: advance directive, declaration of final disposition, information on wills, contact lists, financial information access, password access, death certificate, medical aid in dying (MAID), legacy work, obituaries, hospice, end-of-life doula offerings, living wakes, funerals, body disposition, and death cafés.

Some have suggested that she do away with the printed materials and direct attendees to online resources, but in her experience it’s important for folks to have the information readily at hand.

“…We live in such a death-phobic society, and nobody talks about this stuff. I come along and throw all this information at people. It’s overwhelming to begin with, but it’s also easy to be engaged with the topic and have good intentions to move forward with your end-of-life plan while you’re sitting in the room…but as soon as you go home, you lose the impetus… If you must go online and print all the documents, it’s easy to procrastinate. Whereas if you go home with the purple packet and it’s lying on your counter or someplace, and you see it, it’s easier to say to yourself, ‘I really should do that.’ So that’s the primary reason why I provide the printed material. That’s another non-negotiable for me: I think people need to walk away with information in their hands to motivate them to do the work.”

She also provides multiple flavors of delicious cake in the form of skulls, just one way she lightens the mood during the presentations.

A couple of people financially support Leona’s death education work, and she’s recently begun the application process for non-profit status. That will enable her to form an advisory board, apply for grants, seek tax-deductible donations, and perhaps eventually become a paid employee. But it’s a long road ahead and still very much a labor of love. She says, “I feel one thousand percent that this is what I am supposed to be doing.” She doesn’t know anyone else, especially in Maine, who is doing this work the way she is. Others give sporadic presentations on special topics, but she knows of no other comprehensive program. She’s always learning. When participants ask questions, she researches the answers and incorporates them into her program, which is, consequently, always evolving.

Leona has been extremely gratified by the response to her death education offerings.

“I have been so pleased with how much positive feedback I’ve gotten. I think people are really grateful and energized to learn they have more options than they thought. People get really engaged… It’s just been so positive, rewarding, and motivating. One woman—I love this story—raised her hand and said, ‘Why don’t we know this stuff?’”

I asked Leona if she thought some of her success could be chalked up to American society becoming more open and receptive to talking about death.

“That could be possible,” she opined. “I think COVID changed a lot of things for people. But I tend to think my approach also leads to success because I don’t tiptoe around it. I don’t use soft words; I just talk about it, and I’m upfront, and I try to bring levity to it.”

I also asked what age groups make up her audience. She says attendees tend to be on the older side, but she’s also had people in their twenties and even some teenagers.

“…when I do these programs, it’s an offering to everyone. It kind of drives me a little crazy when people want to bring me in only for an elder series. I’m fine with that, but in my head, this is for everybody. I think that the sooner you know this information, engage with your mortality, think about it, and prepare for it, the sooner you can put it aside and live your life in a freer, more meaningful way.”

Leona tries to avoid offering her personal views on death and mortality during her presentations. She sees herself as an information provider and a conversation facilitator. But there is one almost universal experience that she sometimes speaks about:

“I’ve seen it, and I’ve heard about it, consistently, the fact that people who are actively dying very often talk to or about people that have died before… And that’s consistent across cultures, religions, countries, and social groups. I’ve seen it over and over. There’s something to that, but I don’t know what it is. I’m not a religious person…I just feel that we’re made of energy, and that energy goes somewhere when we die. It brings me a lot of comfort, but I don’t know exactly what it means. So, long story short, I do not bring my own stuff to the conversation… I’m always intrigued to hear about what other people feel or think.”

What is most rewarding about this work? Leona says it’s twofold: one, getting the information into people’s hands, planting the seeds, letting them know about their options, and two, giving them tools for dealing with death at the bedside. She says,

“…if someone is bedside in a dying experience, they may remember things they can do to help the person that’s dying or themselves, to neutralize the fear of what’s happening…If you don’t know what to expect, it can look kind of scary, and it can seem like a terrible thing when it’s not.”

Of course, the overwhelmingly positive response to her program is also rewarding. “It’s all come together in a way that I never imagined. I’m doing the thing I really wanted to do.”

“What advice do you have for others interested in pursuing a career in death education?” I asked.

“There should be more of what I am doing. You can’t do it all by yourself. I don’t want a monopoly on it. I think the way I am doing it is kind of unique. Maine Death with Dignity does community presentations on medical aid in dying. There are obituary-writing workshops and legacy workshops, but I’m doing it all in one…People are so hungry for this information when it’s presented in a digestible way. I would love to see more of what I am doing.”

Talking with Leona, who is extremely well-informed about everything related to death and hungry to learn even more, was an exceedingly upbeat way to end my reflections on the Five Remembrances (see previous posts in this series). You could say she is passionate about death—well, really, about dying well and helping others make the decisions and take the actions that make that possible.

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I have mentioned here before that I meet monthly on Zoom with a group of women who talk about our experiences of aging and our musings on death. We explore our stories, insights, discomfort, and fear about the inevitable decline of our bodies and the certain end for us all. A few weeks ago, we had a courageous discussion about dying, our own and that of those we love. Not surprisingly, most of us expressed more fear about the possibility of a painful, demeaning, drawn-out dying process than about the moment of death and what, if anything, comes after it. We ventured onto the delicate topics of Death with Dignity and Physician-Assisted Death, which is legal in some countries, including Canada, where I was born.

I told the story of my Canadian cousin’s husband’s death. I’ll call him Leigh and her Meredith. He suffered for years from debilitating cancer, which was diagnosed just after his retirement when they had planned finally to begin their travel adventures together. Leigh, supporting and delighting in Meredith’s wanderlust and love of natural beauty, encouraged her to go exploring on her own and with their daughters. He enjoyed her travels vicariously and enthusiastically. However, as time went on, she traveled less as he needed more care and experienced frequent hospitalizations for treatment and long energy-less periods confined at home.

Though he tried his best not to be a burden for his family and patiently bore the symptoms of his disease, it troubled him that Meredith’s life centered around him and his ups and downs. He recognized her profound sadness as she watched him suffer, helpless to alleviate it, and worried about how she would cope with what they had good reason to believe would be a painful and degrading end. As the pain increased and his energy ebbed, recognizing his own and Meredith’s exhaustion and the toll his suffering was taking on her, he decided to apply for MAID, Medical Assistance in Dying. Canadian law provides this option for individuals who are terminally ill or in intolerable pain.

Together, Leigh and Meredith navigated all the legal requirements and preparations and finally arrived at the day of his death. Meredith and both of their adult children gathered around his hospital bed, said their goodbyes, and expressed their love and gratefulness for each other. Medical personnel administered the necessary medications, and quietly and peacefully, Leigh went to sleep and then ceased to breathe. Meredith experienced the meticulously planned and compassionately orchestrated end as a gift of love Leigh gave to himself, her, and their daughters. Years later, she still speaks movingly of this gift and her memories of their last intimate moments together. She says Leigh was right; a horrible end would have been much more difficult for both of them to endure and for her to recover from. Instead of her beloved in agony, her last memory of him is tender and peaceful.

I did not tell the story of my mother’s death in that morning’s discussion group. In her early eighties, she was diagnosed with pancreatic cancer after a long period of ignored symptoms and then months of waiting for tests and doctors’ appointments. The specialists said that her only hope of survival was a drastic surgery in which her abdominal organs would be removed from her body to make the tumor on her pancreas accessible for excision. Then, they would replace the organs, and everyone hoped everything would work properly again. It was a risky option back then for even a younger, more fit person, but it was a long shot for someone in their early eighties. By demonstrating determination and pestering her doctors, she got them to agree to perform the surgery, even though success was extremely uncertain. She wowed them on the pre-surgery stress tests, proving that she was strong enough to withstand the operation, but as the day approached, she was anxious and irritable.

One evening, I asked her why she was willing to put herself through such trauma for perhaps just a few more years of extended life when she could not count on a full recovery or high-quality health. She responded without hesitation, as though she had already asked herself that very question and was certain of the answer. “It’s for your father,” she said. “He will be too lonely when I die. But don’t tell him.” I didn’t press her further. She and my dad did not have an overtly romantic relationship. I can’t remember her ever expressing feelings of love to anyone. On the contrary, she tossed criticism liberally in all directions. But they had been married for more than fifty years, and their lives were so intertwined that she knew her death would be his undoing.

She had the surgery. The team opened her up and saw an abdomen riddled with cancer, so they closed her and sent her to recovery. The surgeon told us the outcome and gave a prognosis of one to three months. She lived through the night and, early the next morning, experienced massive internal bleeding, was taken back to surgery, and died of heart failure. My father’s sobbing heartbreak is seared into my memory, as is the sight of his forlorn, defeated figure standing outside her empty bedroom at home that evening.

I’m not sure if my mother ever told my father that she loved him, but she knew how much he loved her, and she was willing to endure a horrendous surgery out of compassion for him—her gift of love. He lived for five lonely years after her death, making the best of each day but missing her profoundly. It was tough to watch.

Another member of the aging-and-death discussion group shared a glimpse into a recent awakening. She’s been seeking understanding of love, what it is, how it feels, how it manifests, for quite some time. Recently, she and her husband were walking during an outing. He is older than she and is slowing down slightly. She found herself dropping back to match his slower pace and wondering at the tender willingness she felt as she did so. Could this be love, she asked herself—some facet of love?

As I draw nearer to my own inevitable death—The Big Let Go—I ask myself what will be most important to me, and I know instantaneously and completely that it will be love. Everything else will fall away, and the only important activity will be loving—giving and receiving it. Knowing this, shall I start to practice now? Let go of all but love, in every moment and situation, and lean into loving—fall into it, and trust it utterly.