Death is inevitable, and in a civilised society everyone deserves a good one. It would therefore be logical to expect aged-care homes would provide superior end-of-life care. But sadly, palliative care options are often better for those living outside residential aged care than those in it.
More than a quarter of a million older Australians live in residential aged care, but few choose to be there, few consider it their “home”, and most will die there after living there for an average 2.6 years. These are vulnerable older people who have been placed in residential aged care when they can no longer be cared for at home.
The royal commission has made a forceful and sustained criticism of the quality of aged care. Its final report, released this week, and the interim report last year variously described the sector as “cruel”, “uncaring”, “harmful”, “woefully inadequate” and in need of major reform.
Quality end-of-life care, including access to specialist palliative care, is a significant part of the inadequacy highlighted by the report’s damning findings. This ranked alongside dementia, challenging behaviours and mental health as the most crucial issues facing the sector.
In truth, we have already known about the palliative care problem for years. In 2017 the Productivity Commission reported that end-of-life care in residential aged care needs to be better resourced and delivered by skilled staff, to match the quality of care available to other Australians.
This inequality and evident discrimination against aged-care residents is all the more disappointing when we consider these residents are among those Australians most likely to find themselves in need of quality end-of-life care.
The royal commission’s final report acknowledges these inadequacies and addresses them in 12 of its 148 recommendations. Among them are recommendations to:
enshrine the right of older people to access equitable palliative and end-of-life care
include palliative care as one of a range of integrated supports available to residents
introduce multidiscpliniary outreach services including palliative care from local hospitals
require specific training for all direct care staff in palliative and end-of-life care skills.
What is good palliative care?
Palliative care is provided to someone with an active, progressive, advanced disease, who has little or no prospect of cure and who is expected to die. Its primary goal is to optimise the quality of life for that person and their family.
End-of-life care is provided by palliative care services in the final few weeks of life, in which a patient with a life-limiting illness is rapidly approaching death. This also extends to bereavement care for family and loved ones.
Unlike in other sectors of Australian society, where palliative care services are growing in line with overall population ageing, palliative care services in residential aged care have been declining.
Funding restrictions in Australian aged-care homes means palliative care is typically only recommended to residents during the final few weeks or even days of their life.
Some 70% of Australians say they would prefer to die at home, surrounded by loved ones, with symptoms managed and comfort the only goal. So if residential aged care is truly a resident’s home, then extensive palliative and end-of-life care should be available, and not limited just to the very end.
Fortunately, the royal commission has heard the clarion call for attention to ensuring older Australians have as good a death as possible, as shown by the fact that a full dozen of the recommendations reflect the need for quality end-of-life care.
Moreover, the very first recommendation — which calls for a new Aged Care Act — will hopefully spur the drafting of legislation that endorses high-quality palliative care rather than maintaining the taboo around explicitly mentioning death.
Let’s talk about death
Of course, without a clear understanding of how close death is, and open conversation, planning for the final months of life cannot even begin. So providing good-quality care also means we need to get better at calculating prognosis and learn better ways to convey this information in a way that leads to being able to make a plan for comfort and support, both for the individual and their loved ones.
Advanced care planning makes a significant difference in the quality of end-of-life care by understanding and supporting individual choices through open conversation. This gives the individual the care they want, and lessens the emotional toll on family. It is simply the case that failing to plan is planning to fail.
We need to break down the discomfort around telling people they’re dying. The unpredictability of disease progression, particularly in conditions that involve frailty or dementia, makes it hard for health professionals to determine when exactly palliative care will be needed and how to talk about it with different cultural groups.
These conversations need to be held through the aged-care sector to overcome policy and regulation issues, funding shortfalls and workforce knowledge and expertise.
We need a broader vision for how we care for vulnerable Australians coming to the end of a long life. It is not just an issue for health professionals and residential care providers, but for the whole of society. Hopefully the royal commission’s recommendations will breathe life into end-of-life care into aged care in Australia.
Dr. Ronald Bayne was one of Canada’s first geriatricians and spent much of his long career as a passionate advocate for better care for the elderly, working to solve the problems in long-term care homes.
At 98, and racked with chronic pain, he turned his advocacy to another cause critical to the elderly: planning the end of life.
Bayne, who was a professor emeritus of McMaster University, died on Friday after deciding to take advantage of the opportunity for medical assistance in dying.
Before dying, he shared his story with the media and produced a compelling video urging seniors and their families to take control of the end of their lives.
The 12-minute video is a powerful demonstration of Bayne’s passion for the cause to the very end, part reflection on death and dying, part rallying cry for better health care and autonomy for the elderly.
“I’m 98 so I am near the end of my life. Fortunately, my mind is still clear though my body is exhausted,” he says in the video.
“I want the vast majority of the population, and seniors in particular, to realize that they have far more control at the end than they realize they do. Every Canadian has the right to control their own bodies. There’s no question about it. You are legally entitled, and you must insist that your voice is heard.”
In the video, Bayne is eloquent and passionate, referring to Dr. William Osler and Shakespeare and his long experience in health care.
“I had a long career as a physician and over these many years I’ve been struck by the fact that increasingly people are fearing death and dying. I think it’s become almost universal,” he says. “People themselves have become fearful about what may happen at the end of their lives, and if they’re going to be suffering great pain, if they’ll get relief.
“I want people to get over this fear of the unknown and make it known. Discuss it openly, realizing that death is inevitable.”
He says everyone has the right to end their life if it has become unbearable. “Some people say that’s promoting death. Of course it’s not promoting death. Death is inevitable, you don’t need to promote it. No, this is to reduce suffering and pain. And if you as a person are not likely to pass on soon, you should be able to control your own end of life.”
Trained at McGill University, Bayne was a professor of medicine at McMaster’s Michael G. DeGroote School of Medicine from 1970 until he retired as a professor emeritus in 1989.
He received an honorary degree from McMaster in 2006 for his advocacy and work raising awareness of the need for better care of the elderly and chronically ill people, and his initiation of programs that work to prevent the warehousing of often marginalized populations.
It is clear from the video that his passion for this work continued through the very end of his life.
“We must have our voices heard. That’s what I’m urging people to do in later life,” he says in the video. “Take that responsibility. Let us ensure that the health-care system for long-term care is properly organized and managed and supervised.
“We know, from recent experience with COVID, that these long-term institutions were very poorly managed, and in a way, the general public is justified in their fear of what will happen to seniors in those places,” Bayne says, suggesting the seniors need to realize they have more control than they think they do.
“We as seniors should be working with our families to discuss the end and how we wish it to occur and building up their [family’s] feeling of confidence that it will be peaceful for us and bearable for them. So instead of focusing on the end, build up great memories, happy memories that the family will treasure afterwards.”
Bayne had a close relationship with the university over the years, and 13 of his family members have McMaster degrees, including the honorary degree awarded his son-in-law, Michael Hayes, in 2017.
Bayne and his wife Barbara have made several donations to the university, establishing the Ronald Bayne Gerontology Award for a graduate student conducting aging research; and the Barbara and Ronald Bayne Award to provide support for senior students in the Department of Health, Aging and Society who are engaged in practical learning experience as part of their undergraduate studies.
“Dr. Bayne has been a wonderful teacher for all of us from his days at McMaster helping create geriatrics as its own discipline in Canada, to just before his death,” said Paul O’Byrne, dean and vice-president of the Faculty of Health Sciences. “I am very grateful for all of his lifelong contributions to improving the health of Canadians.”
Parminder Raina, scientific director of the McMaster Institute for Research on Aging, added: “One of Canada’s first geriatricians and a physician at Mac, Dr. Bayne founded the Hamilton-Wentworth Group on Aging, the Gerontology Research Council of Ontario (GRCO) and led the Canadian Association on Gerontology in the ‘80s. His tireless work in the area of geriatrics and gerontology drove the infusion of a lot of provincial funding into research and training in aging at a crucial time.
“His powerful messages around death and dying are inspiring and important.”
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.”
People spend their entire lives fighting back against death as part of the human condition. Some doctors may fear death, too, but physicians need to talk with patients about their end of life wishes especially during the pandemic, she says.
When patients come in for annual physicals, Dugdale asks if they want to talk about their end of life wishes — and most people say no.
“However, when we get talking, people realize that this is something important, that dying well is very much wrapped up in living well,” she says. “And in order to die well, we have to make some active decisions now while we’re healthy.”
Many people want someone to open the door to this conversation but don’t know how to start it themselves, she says.
The pandemic has raised concerns about ventilators and dying alone in the hospital. One of the biggest obstacles of this challenging time is providing dying people with community and family despite COVID-19 precautions, she says.
In her book, Dugdale shares some forgotten wisdom from the 14th century bubonic plague outbreak. Historians estimate that the “enormously devastating” outbreak killed as many as two-thirds of Western Europeans, she says.
In the 1300s, people approached the possibility of death in some eerily similar ways compared to today.
Some people decided to live large and indulge in hedonism without fretting over the looming possibility of disease and death. This group is comparable to travelers who faced criticism for going on spring break trips early on in the coronavirus pandemic, she says.
Others didn’t leave their house or engage with their community at all during the plague in hopes of earning “divine retribution,” she says. People didn’t know that bacteria caused the plague, but they understood venturing outside could result in getting sick. During the coronavirus pandemic, some people similarly haven’t left their houses at all or only a few times.
The final group of people tries to strike a balance between living life and recognizing the inevitability of death. These individuals continue to engage with society in a wise, prudent way to protect themselves and others, Dugdale says.
“Whether it is plague or pandemic or famine or war, we all are facing our mortality,” she says. “Death has been and always will be 100%.”
Here & Now host Tonya Mosley’s grandmother always taught her that death is a part of life. Dugdale writes that conversations around death should mirror the birds and the bees chat, but she sees generational differences around talking about death in her patients and family members.
Dugdale’s grandfather returned from fighting in World War II and immediately secured cemetery plots. He made ongoing jokes for years about his relationship with the undertaker and threatened to write people out of his will depending on matters such as getting a tattoo he didn’t like, she says.
“But this idea that we need to, just as a matter of practical import, get ready for death is something that really feels like we’ve lost in the younger generations,” she says.
Everyone has a role to play in talking about living and dying well, she says. One common misconception around talking about death is that the conversation should occur close to the end of someone’s life.
People need to prepare to die well when they’re still healthy, she says. For some people that means fulfilling medical wishes such as do-not-resuscitate orders or planning to die at home. If someone wants to die at home surrounded by loved ones, Dugdale says to question if they’re investing in those relationships now.
Death also brings questions about the meaning of life and what happens afterward. Trying to seek answers on your deathbed is difficult, so Dugdale advocates for taking some cues from the Middle Ages.
“We should do this work now,” she says. “And so even engaging these questions of living and dying well — about what life means in the context of our communities over the course of a lifetime — is the best way to work toward a good death.”
It is hard to know how much my patient, caught in an eternal childhood, understood about his cancer.
By Mikkael A. Sekeres, M.D.
When I first met my patient, three years ago, he was about my age chronologically, but caught in an eternal childhood intellectually.
It may have been something he was born with, or an injury at birth that deprived his brain of oxygen for too long — I could never find out. But the man staring at me from the hospital bed would have been an apt playmate for my young son back home.
“How are you doing today, sir?” he asked as soon as I walked into his room. He was in his hospital gown, had thick glasses, and wore a necklace with a silver pendant around his neck. So polite. His mother, who sat by his bedside in a chair and had cared for him for almost half a century, had raised him alone, and raised him right.
We had just confirmed he had cancer and needed to start treatment urgently. I tried to assess what he understood about his diagnosis.
“Do you know why you’re here?” I asked him.
He smiled broadly, looking around the room. “Because I’m sick,” he answered. Of course. People go to hospitals when they’re ill.
I smiled back at him. “That’s absolutely right. Do you have any idea what sickness you have?”
Uncertainty descended over his face and he glanced quickly over to his mother.
“We were told he has leukemia,” she said. She held a pen that was poised over a lined notebook on which she had already written the word leukemia at the top of the page; I would see that notebook fill with questions and answers over the subsequent times they would visit the clinic. “What exactly is that?” she asked.
I described how leukemia arose and commandeered the factory of the bone marrow that makes the blood’s components for its own sinister purposes, devastating the blood counts, and how we would try to rein it in with chemotherapy.
“The chemotherapy kills the bad cells, but also unfortunately the good cells in the bone marrow, too, so we’ll need to support you through the treatment with red blood cell and platelet transfusions,” I told them both. I wasn’t sure how much of our conversation my patient grasped, but he recognized that his mother and I were having a serious conversation about his health and stayed respectfully quiet, even when I asked him if he had questions.
His mother shook her head. “That won’t work. We’re Jehovah’s Witnesses and can’t accept blood.”
As I’ve written about previously, members of this religious group believe it is wrong to receive the blood of another human being, and that doing so violates God’s law, even if it is potentially lifesaving. We compromised on a lower-dose treatment that was less likely to necessitate supportive transfusions, but also less likely than standard chemotherapy to be effective.
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“Is that OK with you?” my patient’s mother asked him. I liked how she included him in the decision-making, regardless of what he could comprehend.
“Sounds good to me!” He gave us both a wide smile.
We started the weeklong lower-dose treatment. And as luck would have it, or science, or perhaps it was divine intervention, the therapy worked, his blood counts normalized, and the leukemia evaporated.
I saw him monthly in my outpatient clinic as we continued his therapy, one week out of every month. He delighted in recounting a bus trip he took with his church, or his latest art trouvé from a flea market — necklaces with glass or metal pendants; copper bracelets; the occasional bolo tie.
“I bought three of these for five dollars,” my patient confided to me, proud of the shrewdness of his wheeling and dealing.
And each time I walked into the exam room to see him, he started our conversation by politely asking, “How’s your family doing? They doing OK?”
Over two years passed before the leukemia returned. We tried the only other therapy that might work without leveling his blood counts, this one targeting a genetic abnormality in his leukemia cells. But the leukemia raged back, shrugging off the fancy new drug as his platelets, which we couldn’t replace, continued to drop precipitously:
He was going to die. I met with my patient and his mother and, to prepare, asked them about what kind of aggressive measures they might want at the end of life. With the backdrop of Covid-19 forcing us all to wear masks, it was hard to interpret their reactions to my questions. It also added to our general sense of helplessness to stop a merciless disease.
Would he want to be placed on a breathing machine?
“What do you think?” his mother asked him. He looked hesitantly at me and at her.
“That would be OK,” he answered.
What about chest compressions for a cardiac arrest?
Again his mother deferred to him. He shrugged his shoulders, unsure.
I turned to my patient’s mother, trying to engage her to help with these decisions. “I worry that he may not realize what stage the cancer has reached, and want to avoid his being treated aggressively as he gets sicker,” I began. “Maybe we could even keep him out of the hospital entirely and allow him to stay home, when there’s little chance …” My voice trailed off.
Her eyes above her mask locked with mine and turned serious. “We’re aware. But we’re not going to deprive him of hope at the end …” This time her voice trailed off, and she swallowed hard.
I nodded and turned back to my patient. “How do you think things are going with your leukemia?”
His mask crinkled as he smiled underneath it. “I think they’re going good!”
A few days later, my patient developed a headache, along with nausea and dizziness. His mother called 911 and he was rushed to the hospital, where he was found to have an intracranial hemorrhage, a result of the low platelets. He slipped into a coma and was placed on a ventilator, and died soon afterward, alone because of the limitations on visitors to the hospital during the pandemic.
At the end, he didn’t suffer much. And as a parent, I can’t say for certain that I would have the strength to care for a dying child at home.