Long-term-care staff are so swamped with COVID-19 protocols that end-of-life discussions aren’t occurring with residents and families, says a McMaster University professor.
Sharon Kaasalainen, a professor in the school of nursing, says she’s hearing from families that they’re feeling excluded from decisions about their loved one’s care.
“Compassionate care is missing because it’s all around public health protocols,” she said, noting the absence of these conversations is causing “serous concerns.”
Kaasalainen recently met with the Ontario Long Term Care Association and other long-term-care leaders to raise the issue. The point of compassionate care, she says, is to help people become more comfortable talking about death and supporting families through that process.
Kaasalainen’s research involves helping facilitate conversations about end of life in long-term care. She recently received funding to adapt her research for COVID-19, including by developing online tools to support those discussions. The goal is to help residents, families and staff prepare for decisions at the end of a patient’s life.
While COVID-19 poses major staffing challenges, Kaasalainen says palliative care also has to do with education and a home’s priorities.
Her study will pilot online tools at homes in three provinces. Locally, that includes St. Peter’s Residence at Chedoke on the west Mountain, where she expects to roll out the online resources in spring.
The tools in the study include pamphlets on conditions common to long-term-care residents to help both residents and families learn what to expect as a disease progresses.
Pam Holliday participated in an earlier part of Kaasalainen’s research. She says the tools taught her to ask care providers more specific questions about the health of her elderly mother, a resident at Shalom Village in Westdale.
Holliday says palliative care conversations can help even before a person’s death. In her case, her mother got sick multiple times, but bounced back.
“You try to make them better, but you try to make them enjoy what they have,” Holliday said about the approach.
She adds that the resources are particularly helpful during COVID-19, when there are restrictions on visits to long-term care.
“We’re totally reliant on staff communicating any changes with us,” Holliday said. “It’s (about) asking the right questions.”
Kaasalainen says care conversations can also include the type of music a person would like to hear when they’re dying and which loved ones are with them. But avoiding the discussions affects the quality of care during a patient’s final days and how families cope after a death.
“We’re seeing families very distressed, having to make decisions unprepared, and it leads to poor bereavement,” Kaasalainen said. “They have these lingering feelings of guilt and stress.”
In March, Kaasalainen is also planning to launch a national community of practice with the Canadian Hospice Palliative Care Association. It would bring together researchers, care providers and families in long-term care to discuss palliative care.
Her hope is to see families involved in care decisions feeling better prepared.
“The goal really is good death, peaceful death and families feeling guilt-free and prepared for death when it happens.”
Here are the last questions from the most recent Conversations Under the Oaks. They’ve been edited for length and clarity, but I’ve done my best to preserve the thinking behind the questions.
What are your thoughts on the restless dead? We have a potter’s field here locally that I feel very drawn to. It was recently rediscovered and is the resting place of the homeless, the unidentified, the stillborn, etc. from around the 1900s to the early 1960s. I feel a deep connection to this place. Any thoughts?
There is a very old idea that people who die sudden and/or violent deaths, who die with unresolved issues, or who do not receive proper funeral rites do not move on to whatever comes next, but instead remain here as earthbound spirits. Alternatively, their souls – the essence of who they are – may move on, but the “energetic remains” of their trauma sticks around and occasionally the living bump into it.
I have some experience with this, but I’m far from an expert in it. If you have serious specific issues, I recommend you find someone who’s dealt with this a lot more than I have. But in general…
First, simply listen
What do you feel? What do you hear? One voice or many voices? Is there an attempt at communication, or is it just noise?
A few years ago I visited Chickamauga National Military Park, site of the second most deadly battle of the U.S. Civil War. I grew up 15 miles from Chickamauga and visited it occasionally – I always felt like the dead were near. But on this trip, I heard them screaming. Here’s what I had to say at the time:
By my belief system and the belief systems of most, those who died here went on to the afterlife, however you conceive of such a place. Those who believe in reincarnation would likely assume that many have been reborn, perhaps several times.
Perhaps there are a few souls trapped here 153 years later, but surely not many. Perhaps the physical remains (both human and man-made, like the cannons) facilitate a connection across the realms. I don’t know.
I just know I heard the dead screaming.
First, I would listen. I would make offerings to all those there, and if possible, to specific individuals. Keep in mind that most were Christians in life – be respectful of their beliefs and expectations, without disrespecting your own.
I would help keep the place clean, to the extent that such activities are permitted by the landowners. People get nervous when anyone takes an interest in a cemetery – they often jump to conclusions of malefic magic, even if they have no idea what that means.
I would not attempt to cleanse the place. I wouldn’t attempt to help any spirit “move on” unless I was sure I was dealing with one individual spirit and not either energetic remains or a conglomeration of spirits.
Worship and Magic in Paganism and Christianity
Here’s a question on the different approaches to magic in Paganism and Christianity.
I’ve been thinking about the underlying structure of magic and religion. With Christianity, it seems like they combine devotionals to a deity with executing magic to invoke the deity’s power. With Paganism, it seems like there is more focus on magic as an individual practice.
A question like this requires the disclaimer that Christianity and Paganism are both broad and diverse traditions. Southern Baptists, Roman Catholics, and the United Church of Christ are all Christians, but they take very different approaches to it. Likewise, Gardnerian Wiccans, Celtic Reconstructionists, and kitchen witches are all generally (though not universally) considered Pagans, but they have very different beliefs and practices. So any attempts to compare “Christianity” and “Paganism” are necessarily broad, high-level, and will have many exceptions.
Further, much of what’s generally considered “folk magic” is done in the context of a Christian worldview, even though it’s unsanctioned. This question is concerned with official approaches, so that’s how my response is structured.
Let’s start with some definitions. Worship is declaring what is worthy. Magic is the art and science of creating change in conformance with will (that’s Crowley’s definition – I haven’t found a better one). Religion is the common beliefs and especially the common practices that bind a group of people together.
Magic: one form or many forms?
In orthodox Christianity, magic can only be done with the intercession of the Christian God. Therefore, it makes sense to incorporate pleas for such intercession with rites of worship.
In most forms of Paganism, magic is understood in a broader sense. My Threefold Theory of Magic says that while magic works by the intercession of Gods and spirits, it also works by our manipulation of unseen forces, and by psychological programming. So while we can incorporate magic into our worship (and I frequently do, especially in the big High Day celebrations), we have other options that Christians don’t.
Further, we have many different magical systems: energy work, herbal magic, stones and crystals, sigil magic, visualization, bardic magic, and others. These diverse systems lead to a diversity of practice.
All religions have something to say about magic, even if what they say is “magic doesn’t exist.” What they say about magic will determine how – or if – they work magic. Pagans see magic as much broader than Christians see it, so we have more approaches to working it.
Predictions for the next few years
The last question is a big one.
I’m interested in your thoughts on the next few years: predictions about Pagan culture and the Big Tent, but also how things are going to go with Nazi Pagans. And predictions for the spiritual side of things.
I occasionally mention the Big Tent of Paganism, but my enthusiasm for it has significantly waned over the past few years. My dream was that we would build robust individual traditions, and then work together on issues of common interest and to build pan-Pagan institutions. But it’s clear there is little interest in building those individual traditions, much less working together across traditions. The vast majority of Pagans simply want to do their own thing in their own way, and far too many live in mortal fear of someone “telling them what to do.”
I think we’re going to have to do a lot more work of creating traditions before people will start to congregate around them. And those traditions are going to have to be centered around things that people can do on their own, because that’s what they want.
I’m sad that the questioner mentioned Nazi Pagans. Or more exactly, I’m sad that they felt the need to mention them. Because they do. There are Nazis and White Supremacists in our wider society, so of course some of them are going to find their way to Paganism. I don’t think that’s going to change. We can and should attempt to isolate them and to deny their legitimacy to use Pagan concepts and imagery. But forget reclaiming the swastika – it’s lost for at least a hundred years, and maybe forever.
The currents of magic are getting stronger
On the spiritual side of things, I think the intersections of this world and the Otherworld are going to become stronger and more frequent. Expect more encounters with the Fair Folk. The currents of magic are going to continue to strengthen – that means if you can work magic, you can work more and better magic. What won’t change is that those who practice regularly will do more and better magic than those who don’t.
We are in the early years of Tower Time. It’s not going to be 2020 for the rest of our lives, but things in general are going to be challenging. But the chaos that is disrupting normalcy is also creating new opportunities: in business, in politics, in religion, in magic, and in virtually every area of life.
Those who pay attention and seize the opportunities will thrive. Those who cling to the past will not.
One of the biggest challenges any songwriter faces is how to turn their own story into a universal story that an artist and millions of his or her fans will like. Most of us find it relatively easy to write OUR story, but much more challenging to write our truth in that universal way.
Early in my career, I wrote a song that I thought I crafted very well. It was called “She Stopped Livin’ The Day He Died”. It was the sad but true story of my grandmother who was so dependent on my grandfather that, when he passed away at age 51, just spent the next 25 years of her life in a sad place.
I painted beautiful pictures of their life together before he passed away. I described his job at the factory and her life as a homemaker. I even used their real names in the song. When I played it for my family, they cried. I thought I had a masterpiece.
So, I confidently walked in to my publisher’s office and told him I “thought I had one”. That’s what we said when we thought we really nailed a song. He listened carefully to my song all the way to the end. I was ready for the “Way to go!!! Garth will love this!!”
It never came. Instead, his response was “That’s the saddest crap I ever heard.” He wasn’t one for sugar-coating anything. I was so upset. I couldn’t imagine why he didn’t love my song.
I asked him what was wrong with the song and he simply said “Garth doesn’t want to tell his audience YOUR grandmother’s sad story night after night.” He went on to explain that the key to writing a hit song was telling MY story in a way that millions of people relate it to THEIR story.
It took a while to sink in, but I finally realized that there is a difference in a great, well written song and a great, well written hit song. What’s the difference? Universal emotion.
My publisher challenged me to take my song about my grandmother and find the universal emotion behind it. So, I spent weeks playing and studying that song until I finally thought I had it figured out.
The universal idea or emotion behind my song was that losing someone sometimes makes us feel like a part of us died. So, I started working on song ideas that would express that feeling in a more universal and less personal way.
First, I decided that writing about someone dying might limit my chances. Not many artists are searching for songs about death. There’s no better way to bring a crowd down at a concert than to start singing a good death song. That idea led me to a more universal (and positive) thought.
I realized that losing someone you love doesn’t have to be talking about dying. In fact, more people would relate if I wrote a song about losing a love interest just because the relationship ended. Armed with that knowledge, I looked through my title database and found the perfect title!
It just so happened I was headed to my publisher’s cabin to write with him (Kim Williams) and Danny Wells. Both Kim and Danny already had hits. I did not! So, I came armed with a bunch of strong ideas. The first one I threw out was “While You Loved Me”. Here’s the lyric we wrote.
While You Loved Me
If I ever write the story of my life,
Don’t be surprised if you’re where it begins
Girl I’d have to dedicate every line on every page
To the memories we made while you loved me
I was born the day you kissed me
And I died inside the night you left me
But I lived, oh how I lived
While you loved me
I’d start with chapter one, love innocent and young
As the morning sun on a new day
Even though I know the end, I’d do it all again
‘Cause I got a lifetime in while you loved me
I was born the day you kissed me
And I died inside the night you left me
But I lived, oh how I lived
While you loved me
Copyright 2000 Sony/ATV Music
That song expresses the same universal emotion as my song about my grandmother, but in a MUCH more universal way. Almost everyone can relate to being broken up with by someone you love. Only my family can relate to my grandmother’s story.
Rascal Flatts cut an amazing record, “While You Loved Me” went on to sell a million records and it became my first top ten hit, landing at #7 on the Billboard chart. And, it was inspired by the story of my grandmother.
All of that to say, the key to writing a hit is finding YOUR truth and then finding the UNIVERSAL truth behind it. That universal truth is the ticket to success as a songwriter.
Filmmaker Jack Dunphy makes personal films. His shorts Serenity, Chekhov and now Revelations, tell stories from his life with a dash of fiction. He uses construction paper as a base material for his animated films and seemingly does detail work with whatever bachelor-pad rubbish he has on hand. These stop-motion worlds are grubby and handmade; there’s no handsome veneer getting between us and Jack’s emotions, though they’re beautiful in their own right. In Revelations, now streaming as part of the Slamdance Film Festival, he combines animation with video footage and photos from his past to tell the story of his high school relationship with Selene Bennet. To win her attention from the “30-year-old rockstar Jared” and “squidboy,” Jack’s friend Ian, he asks her to star in his movies (footage of which is weaved throughout the film). His plan works, and the two start dating. They’re happy together. Jack learns what it’s like to be happy, for what he thinks is the first time in his life. But then Jared’s mom dies, and he begins to come over while Jack and Selene hang out together. Jared leans on Selene for emotional support and introduces her to oxycodone and morphine, getting her hooked.
In a “last ditch effort” to save their relationship, Jack and Selene do acid together for the first time. This sequence introduces hand-drawn animation, present-day footage from the real world and breaks from the film’s two-dimensional plane. Jack has revelations about his father on his acid trip, realizes he’s a guy like any guy, and that he should probably tell him he loves him more. Revelations, like many of Jack’s films, centers on a relationship with someone in his life, or a particular memory, but reveals itself to be about how these people and events connect to his growing understanding of his father, who passed away.
Even before the credits roll on a Jack Dunphy film, which is often when they confirm their autobiographical nature (assuming you haven’t read about it beforehand), you know the films have no capacity for bullshit, and no reason to pretend or to lie to you. Watching Revelations, I was reminded how rare it is for me to immediately trust a film and what it has to say. The film disarms you from the get-go.
Dunphy talked with me about his DIY animation process, what it feels like when an audience cries in reaction to his films, and the portrayal of death in the movies.
Revelations streams at Slamdance from February 12th to the 25th. Dunphy also has an upcoming podcast of the same name, where he interviews subjects, including addicts and convicts, about addiction and loss, and a feature film in the works called Dear Mo.
Filmmaker: I cried a lot the first and second time I watched Revelations. Have you witnessed someone cry in reaction to your films? What does that mean to you?
Jack Dunphy: I take it as a compliment. Laughter and crying are both involuntary responses, as opposed to applause, so it’s nice to know that something I made can—occasionally—provide people with that kind of emotional release. Once at Sundance, a man started crying while telling me how much my short Chekhov, which also deals with my dad’s death, affected him. His dad had died too. It was an intense and honest moment. All the markers of status that preoccupy us—the acceptance from festival programmers, the Instagram likes—all these lizard-brain things fall away when I realize I’ve really touched someone and maybe even helped them a little. Everything else is bullshit.
Filmmaker: Did you cry at any point in the process of making the film?
Dunphy: The tedium of editing numbs you up pretty good. But when I was animating the acid sequence alone in what used to be my dad’s office, manipulating the cutout photograph of my dad, which hovers above my head in the short, I was listening to a symphonic version of Warren Zevon’s “Keep Me In Your Heart.” It was intense. When you’re emotionally prepared to lean into that kind of pain it can be cathartic and healing. I probably teared up.
Filmmaker: Filmmakers like David Lynch and Paul Schrader encourage others to make their craft their therapy. Lynch thinks going to a therapist would dilute his creativity. Yet neither filmmaker really bares their soul in their work, and their films still exist in a movie world vacuum. They don’t feel therapeutic, but yours do. Are they therapeutic to you?
Dunphy: A movie-world vacuum, that’s such an interesting idea. I know what you mean. Lynch and Herzog both put down psychotherapy, and they’re both full of shit. But I do think making art, for me anyway, is more necessary than actual therapy. It’s more revelatory. It’s what I need to do to survive. The problem is after you make the thing, you’re still alone with the feelings. The girl doesn’t come back, your dad doesn’t come back to life, but the process definitely moves you closer to accepting the events and actions that make up your life.
Filmmaker: How did you come to this tactile style of animation, which we first saw in Serenity? Something about it makes the other elements of actual, live action footage and other styles blend seamlessly.
Dunphy: You’re very kind. It’s not like I worked at being an animator, I kind of stumbled into it. Cutout stop motion seemed really self-explanatory from South Park and Terry Gilliam’s Monty Python cartoons. I liked the collage aspect. Serenity was the first thing I animated—as an adult, anyway. I’ve stuck with stop motion because as you say, it has a delicate, tactile feel. A character in Bluebeard, a Kurt Vonnegut novel, says, “People don’t come to art for perfection, they come to it for imperfection.” So with stop motion, especially the kind of DIY stop motion that I do, you can definitely feel the imperfection.
Filmmaker: Why do you think people gravitate towards imperfection? Why are people turned off by it?
Dunphy: Because they can relate to the vulnerability, the messiness —Daniel Johnston’s original lo-fi tapes are timeless because they’re raw. You’re hearing a kid wrestling through personal pain through an artform he’s navigating as he goes. The hiss in those tapes transports you into his basement—you can almost touch him. Then his squeaky clean, later-in-life studio albums produced by other people—I mean overproduced—are just lame. There’s too much crap getting in the way of the songs. Daniel Johnston is too raw for mainstream audiences. But mainstream audiences aren’t looking for art. They’re looking for entertainment—not that art and entertainment are mutually exclusive. But it’s people who are just looking for entertainment that might have a problem with imperfection. If a Pixar short looked like my shit you’d have crying children and confused parents all over the country demanding their money back.
Filmmaker: Do you animate in your home? What’s the lighting setup look like?
Dunphy: When my co-animator Gus Federici and I were making what became Revelations—which was originally supposed to be part of a feature I’m still making—we were working out of my dad’s office. It was available because he had recently passed. Working in the room he worked in all my life probably had some impact on my mindset. We just used the overhead light in the room. That simplicity helped us.
Filmmaker: Can you talk about the making of the acid-trip sequence, which breaks into all sorts of styles and perspective shifts etc.
Dunphy: I like playing with form and pushing form. I realized a great way to express that moment when you see deeply into someone’s soul, or at least think you do, was to have my girlfriend Selene go from a crude cartoon to a realistic, highly detailed illustration, which Gus made. I can’t draw like that. I couldn’t have done the acid trip or anything else in the film without Gus. His rendering of outer space for the moment that closes out the acid sequence, where I float through space as a literal turd—that background was so surprising and impressive. He just splattered white-out on a black piece of construction paper to make the stars. I was like, “Woah. This fucker’s a savant.”
Filmmaker: To my understanding, you can kind of make these films (the animated and archival ones) on your own. Was it challenging to bring other people into the room?
Dunphy: Roger Miller said songwriting is like having kittens, you just go under the porch and do it yourself. That’s how I approach most of what I do. But occasionally someone like Gus comes along who fits into my little world and elevates everything. We don’t talk about the emotion behind things—we don’t talk much at all. I don’t think we’ve once had a “theoretical” discussion about anything.
Filmmaker: What has the process been like in lockdown?
Dunphy: I hate to say the pandemic was good for me because it was and still is bad for so many people. But it was good for me. The mandatory isolation forced me to stop running with the wrong people and going to the wrong places. I started getting healthy and learned to be alone with myself again. When you’re not scared to be alone with yourself there’s no end to what you can get done.
Filmmaker: Is the work sustainable?
Dunphy: Like financially sustainable? No. You get a check here and there but it’s not a living wage. I have to take on other jobs. It’s funny, the thing you work hardest at, your own work, doesn’t pay shit. But the jobs where you barely have to work at all—like video editing or voiceover work—pay. But it’s not like those gigs grow on trees. There’s a fair amount of luck involved. I’m always grateful for them when I get them.
Filmmaker: How do you feel about the general portrayal of death in movies and media? Can you think of an example that resonated? One that didn’t?
Dunphy: Oh, so many movies are disingenuous about it and it pisses me off. The Hollywood version of death and dying, where the dying man gives a great big speech on his deathbed and his children get closure and everything’s wrapped up in a neat bow—that’s not how it goes. It’s like how Hollywood presents love. It creates unrealistic expectations. It’s such a disservice. I thought Michael Haneke’s Amour got it right. Death’s gruesome, let’s not kid ourselves.
Filmmaker: The ending scene, where your dad asks you if you had any revelations during your acid trip, and you think about the loving revelation you had of him during it, but decide not to tell him, gets me everytime.
Dunphy: I’ve been on acid so many times and decided, “I’m gonna write my grandpa a letter and tell him how great he is!” Then you sober up and you never do. Now my grandpa’s gone. If you do a harmful drug like coke, it’s probably best to forget the plans you made on it. That idea for a screenplay you jotted down after your fifth line probably doesn’t need to be written. But with psychedelics—if you do them right—you come up with some good shit. Life shit. Then you make the mistake of saying, “Ha! those crazy drugs. What crazy thoughts I had on those crazy drugs. Okay, back to living my life exactly the way I lived it before I had those great revelations—put the blinders back on, hop back on the hamster wheel.”
Filmmaker: My partner also lost her father but cried less than I did watching Revelations. She said it’s impossible to live in that regret space of “sentiments left unsaid” for someone who lost a parent (or both) without going insane. She felt that the ending might feel more emotional for people who have both their parents because they still have an opportunity to say what they regret not saying, but don’t. They have the privilege of being able to let themselves feel that regret.
Dunphy: I’m sorry for your girlfriend’s loss. And I’m happy you have a girlfriend. I always tell people who haven’t lost a parent: it’s unfathomable until it happens. Then you realize life really does go on. Don’t get me wrong, it will throw you way off balance. But it’s natural. Our parents are supposed to die before we do. There can be relief in finality. Meanwhile, it’s terrible living in fear that you’ll never be able to tell your parents what you really want to tell them before they die. Why are we so emotionally constipated? I don’t know. My grandpa and I never once said we loved each other. If I ever told him I loved him he would probably just break eye contact, hand me a dollar and walk away. It was a generational, Irish thing, I guess. So I figured my way of showing him I loved him was to interview him. He was on the news once and he loved it—some old people like to be reminded that they’ll have a legacy to leave behind. So I was in a perpetual state of anxiety, like, “God, I have to get around to interviewing my grandpa. But not this Thanksgiving, I’m too fucking miserable. Next Thanksgiving. Next Thanksgiving—and so on.” Finally, he literally died on Thanksgiving. And I never interviewed him. So what am I going to do? Dwell on that regret? I already have so many regrets about things I never told my dad and other folks in my life who have shuffled off this mortal coil. So I can’t take on new ones. I’m busy trying to rise above the ones I already have.
Filmmaker: Your films often show real people from your life shockingly unfiltered. Do you prepare them for it? Are there rules?
Dunphy: I mean, legally there are rules. I got sued once. I used to think the way to go about making personal work was to be a bit of a bully and just plow through boundaries and other people’s feelings. I don’t think that way anymore. But no matter how gentle you want to be, if you want to tell a story honestly, or at least in a way that you perceive to be honest, you occasionally have to choose between protecting someone’s feelings and the work. I lost a close friend because I chose the latter. But 90% of the time no one’s pissed about the way I represent them because they see the love. And the way I represent them is not completely unfiltered. I don’t like to give away what’s real and what’s not. It’s not all factual but it’s all true. There are many Selene’s. I’m planning on bracing the one that’s still alive.
Not a day goes by that speakers of the Yoruba language do not make mention of death as both a phenomenon and a certainty.
By George Yancy
This month’s conversation in our series exploring religion and death is with Jacob Kehinde Olupona, a professor of African religious traditions at Harvard Divinity School. He is the author of “City of 201 Gods: Ilé-Ifè in Time, Space, and the Imagination” and “African Religions: A Very Short Introduction.” In this discussion we focused on the religious tradition of the Yoruba people. Previous interviews in this series — with scholars from the Buddhist, Christian, Jewish, Muslim, Jain, Taoist and atheist traditions — can be found here. — George Yancy
George Yancy: Here in the West, where a few monotheistic religions dominate the culture, knowledge and understanding of Indigenous African religious practices is rare. Is Yoruba monotheistic or polytheistic? Or is it something else entirely?
Jacob Kehinde Olupona: Yoruba religion manifests elements of both. It differs from many world religions that define their cosmology primarily in theistic terms. Yoruba religion focuses on the lived religious experience of the people rather than on systematized beliefs and creeds as we see in other world religions such as Islam and Christianity. Yoruba religious traditions are woven around oral traditions and practices. The spiritual realm exists parallel to the human realm and it accommodates the Supreme Being, gods, ancestors and minor spiritual entities who interact with the human realm at different levels.
Central to the Yoruba religious worldview is the notion of (Ase), which Rowland Abiodun has characterized as “the empowered word that must come to pass,” “life force” and “energy” that regulates all movement and activity in the universe. Religious activities are mostly communal and are guided by specialists, custodians and leaders of the traditions: sacred kings, diviners, priests, priestesses and healers, all of whom are integral to maintaining the balance in the cosmos.
The Yoruba conceive the world as two halves of a gourd — the one we live in and the one where the deities and ancestors live. In between these two spheres, there are forces, mainly malevolent in nature (ajogun, or warriors), as Wande Abimbola calls them, who must be constantly placated, sometimes with sacrifices, to prevent them from wreaking havoc on earth. In short, human devotional practices play a central role in regulating the activities of ajogun and in keeping the Yoruba universe in equilibrium.
Yancy: In the West, Indigenous African religions are often dismissed as “primitive” or “superstitious” by those who don’t know them. Can you give readers unfamiliar with African religious traditions some sense of the history and complexity of the Yoruba people and their culture?
Olupona: The Yoruba people, who live primarily in southwest Nigeria, are one of the largest ethnic groups in West Africa. Yoruba people are also found in the Republic of Benin, Togo, Sierra Leone and several other countries. As a result of the trans-Atlantic slave trade, between the 16th and 19th centuries, a large number of Yoruba were taken to the Caribbean, North America and South America, where they had significant influence on the culture and religion of the New World.
Yancy: So in some sense, influences of Yoruba culture and sensibility are already here in the West, and have been for centuries. What about the main population in Nigeria?
Olupona: The origin of the Yoruba in Nigeria is slightly more complex. According to the Yoruba origin myth, the world was created in the sacred city of Ilé-Ifè, where the Yoruba civilization blossomed in the ninth century and grew to become one of the largest empires in West Africa. While the Yoruba Empire Oyo is now acknowledged as the source of the standard and contemporary Yoruba language, culture and value system, it is to Ilé-Ifè (the ancient and sacred city of the Yoruba) that scholars now believe all other Yoruba settlements owe their unrivaled urban culture and robust cosmopolitan city states. Other origin myths allude to Yoruba migration from distant places to their current homes, but that has not been substantiated by archaeology or in the Yoruba culture more broadly.
Yancy: How do Yoruba believers think about the reality and meaning of death?
Olupona: Death as a palpable force looms large in the Yoruba religious and social consciousness. From cosmology to various ritual practices and genres of oral traditions such as proverbs, poetry and short stories are all brought to bear on the reality of death. Not a day goes by that speakers of the Yoruba language do not make mention of death as both a phenomenon and a certainty.
Among the Owo Yoruba people, Iku (death) is likened to the hippopotamus (eyinmi/erinmi), whose heavy weight no person can carry and whose presence one cannot run or escape from. This conveys the dilemma of a bereaved child who can neither carry the body of a deceased parent nor is courageous enough to abandon it, highlighting the helplessness of one when confronted by death.
In Yoruba folk tales, death is also portrayed as an old haggard man who carries a heavy club with which he kills his victims. No one is spared. The young, the old, kings, chiefs, commoners and the rich can all be his victims. It is assumed that at creation, and before individuals leave Orun (the otherworld), the preconscious mind is made aware of when death will strike in Aiye (this world), and when they will return to Orun. The appointed date, however, is never known.
Yancy: According to Yoruba, should human beings embrace death? And if so, how or why?
Olupona: It is assumed that death doesn’t end a person’s life, but instead marks a passage from one realm of existence to the next. Hence, the Yoruba believe there is an afterlife (or an “afterdeath”) in which the living dead exist as part of the sacred cosmos.
There is also an ambiguous response to death, depending on the circumstances surrounding the event. Death in very old age, for example, is welcomed as a fulfillment of one of the cardinal life quests. This form of death is celebrated by the community as a necessary transition to the ancestral world. On the other hand, deaths that occur in infancy, childhood or young adulthood are frowned upon and not often celebrated, because the deceased was yet to accomplish his or her mission on earth.
Deaths involving unnatural causes fall into the same category. It is by tradition a taboo for older people to participate in young people’s funerals, to ward off the malicious knell of death. This is also because the death of a younger person is considered “bad death,” not worth celebrating by the elderly. It is a taboo for kings (Oba) to witness funeral celebrations or behold a dead body.
Yancy: Is there an account within Yoruba that explains why we fear death?
Olupona: Absolutely. Yoruba personal names reveal a lot about why they fear death. Consider the following: Ikubamije, “Death has ruined me”; Ikubileje, “Death has wreaked havoc on our family”; Ikugbeye, “Death has taken away our dignity”; Ikumone, “Death is no respecter of persons”; Ikumofin, “Death does not recognize any law”; Ikupakin, “Death has killed the hero”; Ikupelero, “Death has killed a socialite”; Ikusika, “Death has committed acts of wickedness,” and so on.
The dead must also be called upon to avenge his or her own wrongful death. My maternal grandmother once told me a story of a great-uncle who was murdered on my grandfather’s farm while he was working and whose body was brought home for burial rites. My grandfather, being a devout Christian, was opposed to the rituals of “oku riro,” preferring to leave everything to God. Somehow, before the seventh day of the burial, the deceased avenged his own death by pursuing the murderer in his sleep. The murderer was said to have suddenly woken up from his sleep screaming as the deceased spirit “chased” him. Not long after, the murderer was reported to have collapsed and died!
Yancy: Are there specific circumstances under which we should fear death, according to Yoruba?
Olupona: Yes, especially when deaths are unusually frequent or inexplicable. The Yoruba are accustomed to finding causes of death and ensuring their non-recurrence. For example, they fear death of children known as “abiku” who are associated with “spirit children.”
These are children who are reincarnated to be reborn and die no matter what. These children are stuck in a perpetual cycle that prevents them from growing into adulthood. Death of spirit children defies the Yoruba mind so much so that abiku are said to confound even the most knowledgeable medicine men and women.
They also fear death that occurs in mysterious circumstances such as when a couple dies the day after their wedding, a very experienced swimmer drowns and dies, a ruler dies shortly after ascending the throne, a perfectly healthy individual dies suddenly without any apparent signs of sickness, or all of one’s children or siblings dying on the same day, even though they are all located in different places. All of these examples make one reflect on the significance of Yoruba personal names like Ikudefu, “Death has become a wind”; Ikuosunwon, “Death is not nice”; and Ikujaiyesimi, “O Death, let the community have a breathing space” and Ikudabo, “O Death, please stop.”
Yancy: Is there a relationship between how we live our lives here on earth and what happens after we die?
Olupona: In traditional Yoruba cosmology, there seems to be no explicit reference to final judgment as in Islam and Christianity; humans are enjoined to do well in life so that when death eventually comes, one can be remembered for one’s good deeds. One’s character may be measured in terms of virtue and vice, or in deeds that are worthy of reward. For the Yoruba, this is the core essence of religion.
For example, a prosperous and successful individual can be said to be reaping the good deeds of his/her deceased parents during their lifetime. Likewise, an individual who suffers may be said to be reaping the bad deeds of his or her deceased parents. So, it is assumed that the descendants of a wicked individual may live to reap the punishment meant for his/her parents. Yoruba religion shares this idea with Christianity as in the account of a worthy man of note in the Old Testament book of Ecclesiastes, Chapter 44.
Yancy: How do the Yoruba let go and grieve those who have died?
Olupona: The Yoruba spend an awful lot of time and energy on burying their dead. It is assumed that a “proper” burial is required, not only to ensure the deceased’s peaceful transition to the world of the ancestors, but to ensure that those of the living are not affected by death’s visit. Burial ceremonies and rituals may take up to an entire week and involve the deceased extended and immediate family, their lineage and clan, residents of their town and ultimately the whole community.
In certain places, it is also assumed that the dead must be encouraged to depart quickly and visit the open market (Oja) where they may make appearances as spirits. Among the Owo Yoruba people, it is believed that the dead, through a journey back home, must first return to the sacred city of Yoruba creation, Ilé-Ifè, on their way to the ancestral realm.
In the Owo Yoruba tradition, where age groups are well established, burial rituals and ceremonies are taken seriously. The members of these age groups are responsible for digging the graves of their peers or their peer’s parents who have passed on to ensure that they are properly buried. Hence, the Yoruba would say, “Eni gbele lo sinku, eni sunkun ariwo lo pa.” Literally — “It is the gravediggers who are the real mourners; relations who shed tears are merely making loud noises.”
Patients who have low levels of health literacy are more likely to seek intensive curative treatment at the end-of-life, as opposed to choosing hospice care. In addition to disparities in hospice utilization associated with race or ethnicity, a patient’s understanding of their condition and the available treatments may also be a contributing factor, according to a recent study in the American Journal of Hospice & Palliative Medicine.
Health literacy is the degree to which individuals can obtain, process and understand basic health information and services needed to make appropriate health decisions, according to the Institute of Medicine. A health illiterate patient may have a strong overall ability to read or have an advanced education but have a limited understanding of information specific to health care.
“Medicare beneficiaries who resided in low health literacy areas were likely to receive aggressive end-of-life care,” the study indicated. “Tailored efforts to improve health literacy and facilitate patient-provider communications in low health literacy areas could reduce end-of-life care intensity.”
Patients who lack an understanding of health care information or terminology, do not understand their own illnesses, or who misconstrue the nature of hospice or palliative care may lack the necessary tools to make an informed decision about their end-of-life wishes
For the study, researchers conducted a retrospective analysis of nearly 650,000 Medicare fee-for-service decedents who died between July and Dec. 2011. They used a Health Literacy Data Map to calculate health literacy scores by ZIP code. For the purposes of this study, a score of 225 or lower was defined as low health literacy. Aggressive end-of-life care measures included repeated hospitalizations within the last 30 days of life, no hospice enrollment within the last six months of life, and/or in-hospital death.
Close to 83% of decedents in low health literacy areas pursued aggressive end-of-life care, compared to about 73% in high health literacy ZIP codes. Patients in low health literacy areas were also much less likely to utilize hospice.
Low health literacy is very common in the United States, often impacting older adults. As many as one-third of Medicare enrollees have a low-level of health literacy, and research indicates that this increases across-the-board health care costs by as much as 5% annually.
“Elderly managed care enrollees may not have the literacy skills necessary to function adequately in the health care environment,” a Journal of the American Medical Association study found. “Low health literacy may impair elderly patients’ understanding of health messages and limit their ability to care for their medical problems.”
Most prospective medical school students set out to become physicians because they want to heal the sick, often forgetting that patients, young and old, sometimes die. Death is a very real – and natural – part of medicine that you will not only face, but also need to learn how to handle.
Before you start med school, consider how you might care compassionately for a dying patient and how you will cope with losing patients. Although some specialties may be more insulated from death than others, all will be touched by death beginning in med school.
This year, because of the coronavirus pandemic, many premeds will have experiences with family or friends’ families where they will not able to be with the loved one at the time of death. This is hard on everyone involved. Time to grieve together is important to us as human beings.
Some physicians – although very few in my experience – look at death as defeat and cope by emotionally running away from dying patients. For example, in the inpatient setting, they may visit the patient less often or avoid contact altogether.
Currently, patients who die quickly in the intensive care unit have nurses helping them make a final call to their family if they are awake and aware. It has been tremendously difficult for those doctors and nurses in the hospital to go through this process over and over again with their patients so frequently.
Our daughter in Southern California recently was devastated after losing four of her patients to COVID-19 in the same day. I never experienced that in my long career and wonder how I would have handled that and who I would have called on for support. To keep functioning for the next patient, one must find ways to cry, grieve, share and keep moving.
In the outpatient setting, a physician uncomfortable talking about death might recommend a longer time between visits or, rather than suggest a follow-up appointment, wait for the patient to request one. This coping strategy makes patients feel abandoned.
Most doctors are sensitive and some go to the patient’s residence or nursing home to say their final good-bye. I recently read a humanitarian essay by a physician who did just that. You could discern it had been helpful to both the doctor and the patient to have some final moments together.
Other physicians – again, very few in my experience – cope by behaving callously or indifferently. Subconsciously, they may be trying to avoid emotional involvement, but their behavior leaves their patients and the patients’ families feeling hurt and disappointed.
Most physicians find healthy strategies to support their dying patients. These same strategies help physicians keep themselves emotionally healthy, too. However, this year it has required much more. Sharing the emotional pain with a significant other, parent, another physician or a therapist while omitting confidential patient information can be critical.
If you have had the opportunity to talk with front-line caregivers recently, you will quickly sense the difference in how they are coping. For some, the burden of anxiety, depression or burnout is seeping into their normal level of resilience. After almost a year of a deadly pandemic, it is no wonder.
Several med school applicants who had volunteered in these settings continued with patients after COVID-19 hit by phone calls, letters, FaceTime or even Zoom. I was impressed that their caring was authentic and they considered how important it was for the patient that someone continued to reach out when he or she could have simply stopped communicating and used the pandemic as an excuse. This was an important experience for both the patient and the student applicant, not just some ploy to attract the interest of an admissions screener.
As a future med student, it’s vital that you prepare yourself to compassionately face death and dying and the complex emotions that follow. One way to do this is by volunteering after the coronavirus pandemic ends in a hospice facility or nursing home and honing the following seven skills. You can then call on this experience in the future as a physician.
As a volunteer after COVID, introduce yourself and express your hope that someday you wish to become a physician. Let patients know you are there to learn more about their experiences. Your wish to get acquainted can be a useful conversation starter. Inquire about their experiences when they were growing up or what they were thinking about when they were your age. Ask about their work or career – a generally safe place emotionally – and where they have lived or about their family.
Be sure to make eye contact if you are in person or on FaceTime, and watch your body language. You’ll use these skills when you’re a physician to engender trust and open communication with your patients.
Listen With Purpose
Practice your active listening skills so that during future visits you can ask patients more about what they told you previously. By bringing up something from a past visit, you will show that you remembered what they told you and that they matter to you as a person. Active listening is another skill you will use throughout your medical career and can start cultivating right now, even during the pandemic.
Allow Patients to Talk About Death
Everyone faces death differently. Some people want to talk about it while others prefer to reflect on their life and accomplishments. Whether now as a volunteer or later as a physician in training, let patients talk about death as they need to. Don’t shut down the conversation by saying, “Everything will be all right.” Instead, ask them to tell you more. Listen to all they have to say, whether it’s about their health, fears or fond memories.
This can be very hard, maybe even harder with someone in your own family. You will want them to keep fighting and may be tempted to cut into the conversation to encourage them to keep fighting. Sadly, I learned this the hard way with my own mother. We eventually got around to the hard discussions, but we could have had many richer conversations if I had just listened.
Visit or Connect By Phone or FaceTime Consistently
A good physician builds rapport over time, and you can develop this skill through your volunteer position. Visit patients if you are able. If there are long gaps between your visits, drop the patient a note or call to check in.
This is a good habit to develop so that when you are a physician, your patients – particularly those who are dying – will feel supported. At the end of each visit, thank the patients. You won’t know at the time if it will be your last opportunity to visit with them, so treasure each interaction.
Do Your Homework
Myriad scholarly articles and books are available to help physicians, and all people, accept that death is an inevitable part of life and that grieving is not only normal but encouraged.
Decades ago, Dr. Elisabeth Kubler-Ross wrote about the five stages of grief. We now understand that people don’t necessarily experience the five stages in order; rather, the stages often fluctuate. Most people can describe their shock, anger, depression, negotiation, disbelief and acceptance following a loved one’s death. Some get stuck between anger and depression.
After the initial feeling of loss has abated, most people begin remembering the fun times and reflecting on fond memories. The ones who have inspired me still see the good in life and want to share love, even at the end. Don’t be afraid to cry. If tears begin to flow, patients do not see that as weakness but rather that you sincerely care about them and what they are going through in this process.
Connect With the Social Work Team
Social workers deal with death and dying regularly and can give you advice about how they cope and prevent burnout. For instance, attending the funeral helps some people. Others seek solace from support groups or counseling.
If you’re at a hospital, make the social work team part of your professional network. Their support and advice will help you cope as a physician, especially when you lose a patient who had a particular influence on you.
Allow Yourself to Grieve
Over the course of your relationships with patients who are dying, you will learn a great deal about your capacity to care for another person. When patients die, it will hurt and you will gain some insight about your ability to cope. Physicians often cope by speaking confidentially with colleagues and expressing sadness and other emotions in a journal. After omitting a patient’s protected health information, some physicians publish their writings to help themselves and others who are grieving.
Many medical schools teach students to reflect on their emotions and write them down. Writing and seeing the words help the healing process. Remember that everyone grieves differently. Give yourself the room to process your emotions and to discover the coping mechanism that’s right for you. Writing a note of condolence to a deceased patient’s family via the funeral home or newspaper obituary can be helpful to you and the family.
As a future medical student, embrace the opportunity to get to know someone who is dying. Your experiences will allow you to reflect about how you will feel when one of your future patients dies and will create a meaningful bond between you and the people you touch – now and in the future.