“I feel your pain,” Bill Clinton told an AIDS activist in the 1992 presidential campaign. Well, he probably didn’t. Pain is notoriously subjective and hard to measure. Some patients take the dentist’s drill without an anaesthetic; most of us would rather die.
In the 19th and early 20th Centuries doctors speculated why some groups were more sensitive. Their answers reflected the cultural and racial prejudices of the era. One popular theory was that less civilised groups were both less sensitive to pain and more expressive when they experienced it. Doctors contrasted stalwart, stoic Britons with degenerate, weeping dark-skinned people.
A contrasting theory was that civilisation was making people soft. The father of modern neurology, Silas Weir Mitchell, wrote in 1892 that “in our process of being civilized we have won, I suspect, intensified capacity to suffer. The savage does not feel pain as we do: nor as we examine the descending scale of life do animals seem to have the acuteness of pain-sense at which we have arrived.”
Today the opioid epidemic makes the study of differential rates of pain more urgent than it ever was. Current research seems to indicate that Americans in lower socio-economic groups experience more pain.
“If you’re looking at all pain – mild, moderate and severe combined – you do see a difference across socioeconomic groups. And other studies have shown that,” says University at Buffalo medical sociologist Hanna Grol-Prokopczyk. “But if you look at the most severe pain, which happens to be the pain most associated with disability and death, then the socioeconomically disadvantaged are much, much more likely to experience it.”
It’s also relevant in the debate over assisted suicide. Remember Brittany Maynard, the 29-year-old woman whose assisted suicide in Oregon sent a powerful message to Californians to legalise assisted suicide? Shortly before dying, she said, “I don’t want to die. But I am dying. Death with dignity is the phrase I’m comfortable using. I am choosing to go in a way that is with less suffering and less pain.” Pain, or even the prospect of pain, is often regarded as sufficient reason to ask a doctor’s help in committing suicide.
From the point of view of a utilitarian, an increasingly popular philosophy, any pain might be enough to justify suicide. Indeed, the pessimistic South African philosopher David Benatar argues that “a life filled with good and containing only the most minute amounts of bad – a life of utter bliss adulterated only by the pain of a single pin-prick – is worse than no life at all” (Better Never to Have Been: The Harm of Coming into Existence, 2008).
Coming at pain from a different perspective, linguistics expert David Johnson, of Kennesaw State University, in Georgia, has opened up another line of research. In an article in the Interdisciplinary Journal of Research on Religion he charted the frequency of the words “pain” and “hurt” since the year 1800 in four linguistic databases: Google Books Corpus, Corpus of Contemporary American English, Corpus of Historical American English, and Time Magazine Corpus. What he found was a sharp increase in “pain language” in American English since the 1960s. And over the same period words like “religion” and “God” and related concepts like “mortification”, “patience”, “dread”, and “sin” declined steeply.
Why? It is impossible to propose a definitive answer based on word usage, but Johnson’s investigation points at some intriguing lines of inquiry. His theory is that “this growth parallels the era when language related to the divine was in sharp decline”. In other words, a much greater willingness to talk about pain is correlated to a decrease in religious motivation for enduring pain.
… increasing American secularism plays a significant role. After all, the dilemma of the co- existence of pain and a good God is an eternal problem. To suffer in silence is lauded as the appropriate Christian response to pain. And there is a long Christian tradition of promoting suffering in silence …
But with the increasing secularization in 20th and 21st century American society, notions of Christian stoic piety evaporated; thus, people discuss their pain more. And why not? If suffering in silence is not meritorious nor does it assist in religious redemption, then, like [the Greek mythological figure] Philoctetes, sufferers should complain all they want. If for no other reason, it might make them feel better. Interestingly, the data presented above does show an increase in pain, particularly since the 1960s in American English, which coincides with the same era when language related to the divine was in sharp decline.
This is hardly a watertight proof that secularism is responsible for our increasing sensitivity to suffering, but it sems like a plausible explanation. The central symbol of Christianity is the Cross, two crossed beams of wood with a man who claimed to be God nailed to them. It is, in other words, a religion which purports to explain the mystery of suffering by asking us to contemplate the example of God himself. Secularism’s answer to inescapable pain is “stuff happens” or “life’s a bitch and then you die”.
The ancient wisdom of mankind –Christian, Muslim, Buddhist or Hindu — is that we can bear any suffering if we find meaning in it. But without meaning, all we can do is talk about it. Endlessly. As Johnson points out, if “proscriptions against complaining or even discussing pain are removed, the modern American sees little reason to withhold discussion of pain.”
Those who work with dying people are familiar with patients seeing long deceased loved ones, angelic beings, even hearing music and comforting voices as the patient nears death. Deathbed phenomena have been documented in the days, weeks, and months before death since the 1500s. Often confused with hallucinations, deathbed phenomena can bring comfort to patients and caregivers if those involved know what they are experiencing. This talk will explain deathbed phenomena and present on-going research about the topic. Accounts from the dying and bedside witnesses will be shared.
Mexico isn’t the only country which sets a date with the dead.
Around the world, different countries, cultures, and religions have unique relationships with their dead. And yet, there are plenty of festivals of the dead—which take place over the course of days, or even months—that share spookily similar rituals. Think: offering food, cleaning tombstones, and thanking deceased loved ones for their care and guidance. Don’t let shared origin stories diminish the importance and significance of each one though—they’re all as fascinating as the last.
Hungry Ghost Festival
China’s Hungry Ghost Festival—which has the best name I think I’ve ever heard—is actually a Hungry Ghost Month. In fact, only the final day of the month, when the boundary between life and death is most blurred, is known as the Hungry Ghost Festival, and Chinese Taoists and Buddhists mark the solemn occasion by burning a lot of paper. Not only do they burn paper offerings—which signify the things living relatives wish to send to their deceased loved ones in the afterlife—they also release paper lanterns to help guide the spirits home.
The Obon (or just Bon) Festival is another Buddhist affair, and the Japanese equivalent of China’s Hungry Ghost celebrations (both take place on the fifteenth day of the seventh lunar month). However, the Japanese version is now usually celebrated on a fixed rather than fluctuating date, around mid-August. Depending where you are in Japan, you might see dances (like the Bon Odori), the release of floating lanterns, or bonfires marking the occasion, although visiting graveyards is a common countrywide ritual.
WHERE: North and South Korea
Unlike China and Japan, the Koreas honor their ancestors in the eighth lunar calendar month (roughly September/ October), in a celebration which also combines dance, food and general revelry over three days. The food, especially rice cakes called songpyeon, plays an important role, principally because thanks are also given to the deceased for their role in providing a good harvest. However, like other days of the dead around the world, graves are also cleaned and dances are also danced.
WHERE: Celtic Peoples
Before Halloween (or All Hallows Eve) there was Samhain (or All Hallows), a Celtic tradition that admittedly has much in common with our present-day October 31 rituals. Take our fancy dress tendencies and giving of sweets for example. The day before Samhain, people thought that their ancestors returned from the afterlife to essentially press a giant reset button on the land and leave it empty just in time for winter. As a result, the night before (a.k.a. Halloween), they’d wear masks to blend in and leave food out for the returning souls. Sounds familiar, right?
Fiesta de las Ñatitas
La Paz, Bolivia welcomes an unusual day of the dead ritual each November, as the Aymara people head to the central cemetery with their deceased loved ones’ skulls in tow. Displayed in boxes, and often adorned with flowers, the skulls are also given offerings (think: food and drink) in thanks for having watched out for their relatives from the realm of the dead over the course of the past year.
To catch a glimpse of the Nepalese Festival of the Cows (otherwise known as Gai Jatra), head to Kathmandu in August or September, where the eight-day affair is principally celebrated. Confused as to what a Festival of the Cows has to do with celebrating the dead? Cows are thought to help guide the deceased into the afterlife, so families with a recently departed loved one will guide a cow (or a boy dressed as a cow) through the streets to both honor and aid their deceased.
Qingming (a.k.a. Ancestors’ Day)
Cleaning the tombs of the deceased forms a large part of China’s Ancestors’ or Tomb Sweeping Day, although consuming dumplings and flying kites are also important. Similarly, offering goods of value in the afterlife—such as tea and joss sticks—is also practiced on Qingming. It’s said that this memorial to the dead, which takes place in roughly mid-April, was established as a way to limit the previously overly-extravagant and all-too-regular ceremonies held in memory of the deceased.
Pchum Ben, a 15-day-long ritual when the veil between living and dead realms is considered to be at its flimsiest, is celebrated countrywide in Cambodia. While the first 14 days, known as Kan Ben, are about remembrance, the fifteenth day—or, Pchum Ben Day—is when Cambodians gather en masse to celebrate. And, as with other festivals of the dead, food is offered to the souls of the departed, who it’s thought return to earth to both connect with their loved ones and atone for past sins.
WHERE: Hindus around the world
Undefined by geographical bounds, Pitru Paksha is a Hindu festival which, like that of the Cambodian Pchum Ben, centers on praying and providing food for the deceased. However, Pitru Paksha lasts for 16, rather than 15 days, and those who take part apparently shouldn’t undertake new projects, remove hair, or eat garlic for the duration.
WHERE: Russia, Belarus, and Ukraine
Radonitsa, the Russian Orthodox Church’s second-Tuesday-of-Easter memorial for the departed, stemmed out of a Slavic tradition which involved visiting graveyards and feasting with the dead. Nowadays, the rituals remain remarkably intact, as this joyful remembrance involves leaving Easter eggs on the tombstones of the deceased before dining beside them, as well as sometimes gifting presents to your in-laws.
For German Protestants, Totensonntag (a.k.a. Sunday of the Dead) is considered a day of remembrance, on which those who honor the occasion will typically pay a visit to the graves of their deceased loved ones. However, unlike some of the festivals of the dead mentioned so far, Totensonntag is a far more somber affair. In fact, it’s sometimes known as “Silent Day” and it’s actually forbidden to dance and play music in public in some parts.
The beliefs of the Dayak Ngaju people of Central Kalimantan, Indonesia state that after death and the departure of a person’s soul, their body’s spirit remains on earth. In order to liberate that spirit and ensure they ascend to the highest level of heaven, it’s necessary to conduct a tiwah. Held anywhere from some months to years after a loved one is buried, the tiwah involves the exhumation and purification of bones and can be a prolonged event in which multiple families participate.
Thursday of the Dead
WHERE: The Levant
In the Levant—a historical geographic region which includes many modern day, Eastern Mediterranean countries—Thursday of the Dead (sometimes known as Thursday of Secrets, Eggs or Sweetness) brings together Christian and Muslim traditions to honor the souls of the deceased around the Easter period. Typically celebrated in the morning, sweets and breads are traditionally doled out to children and those in need.
Día de Muertos
WHERE: Mexico and wider Latin America
You can’t talk about global festivals of the dead without throwing in at least a few references to Mexico and wider Latin America’s Día de Muertos festivities. On November 1 (Día de los Angelitos) and 2 (Día de Muertos), people from across Mexico pay homage to and celebrate the lives of their deceased loved ones by building altars and displaying sugar skulls, amongst other things. In Guatemala, giant kites are flown, while in Ecuador, the Kichwa people memorialize their deceased loved ones by visiting, cleaning, and eating at their gravesides.
Talking about death is hard. And usually it’s really, really hard. Maybe it’s because—much like the process of dying itself—it requires us to be vulnerable, to be honest, to come to terms with a denial we engage with, to varying degrees, our whole lives.
“Death happens to everybody, yet somehow we’re surprised by it,” says hospice and palliative care specialist BJ Miller, MD. “I’m shocked at how many patients and family members have not only had to deal with the pain of sickness and loss, but on top of that they feel bad for feeling bad. They’re ashamed to be dying, ashamed to be sick. There’s a horrible unnecessary suffering that we heap on ourselves and each other for nothing.”
The more intimate we get with the idea of dying, the closer we come to folding it into the fabric of our daily lives, the better off we’ll all be, Miller says. Advice on how to die well is really no more than advice on how to live well, with that unavoidable reality in mind.
A Q&A with Dr. BJ Miller, MD
Q What is a good death?
It’s a deeply subjective question, and the best way I can answer objectively it is to say a good death is one that’s in keeping with who you are as a person; a good death is consonant with your life and your personality.
For example, most people say they want to die at home, that they want to be free from pain. That usually means not having a bunch of medical interventions happening at the end. Effort is put toward comfort instead. But I also know plenty of people who say, “No, no, no. I’m the kind of guy who wants to go down swinging,” or “I’m looking for a miracle,” or whatever it is. And for them, a good death may very well be in the ICU with all sorts of interventions happening, anything that’s going to give them a chance, because they see themselves as fighters and they want to go out fighting.
Q What’s the role of hope in dying?
Hope is a beautiful, powerful, and very useful force. It’s what gets most of us out of the bed in the morning. It’s not a question of whether or not you have hope; the question’s more: What do you hope for? The work is harnessing your hope for something that’s attainable or for something that serves you.
When I’m talking to a patient, and I ask them, “What do you hope for?” If they say, “Well, I hope to live forever,” we can label that a miracle pretty safely. I can say, “I’ll hope for that, too, but if we don’t get that, and if time is shorter than you want, then what do you hope for?” Because hope needs to be qualified. So they’ll say, “Ah, well, if I’m not going to be around much longer, well, then I really hope to make it to my grandson’s graduation in the summer,” or “I really hope to get through the World Series,” or whatever it is.
It’s tempting to say that hope is this thing that you either have or you don’t have. That when you don’t have it, then that’s like giving up or letting go. But it’s not. You can hope and understand you’re dying at the same time. It’s very possible when someone comes to terms with the fact that they’re dying soon, that they hope for a painless death, or they hope to die on a certain day. Those are realistic hopes; it’s a matter of channeling that big force.
Q In what ways is our health care system not equipped to handle dying well?
In the last hundred or so years, what’s become the norm for end-of-life care in the West is a very medicalized death. Hospitals and doctors have become arbiters of death; it used to be a much more mystical thing involving nature and family and culture. But of late, medicine in all of its power has co-opted the subject, and so most people look to their doctors and hospitals as places that forestall death.
We’re spending a lot of time—when it’s precious—in the hospital or at a doctor’s office. You spend a lot of time navigating medications. You’re spending a lot of time hanging on every word the doctor says. That’s a problem in that it’s not really what most of us want. But it goes that way because we’re afraid to confront the truth. We’re afraid to talk about it, so we all end up in a default mode. The default mode is in the hospital with a bunch of tubes and medicines and someone keeping your body alive at any cost. That has become the default death, and that’s not what most people would consider a good death.
Q How do you approach that conversation of getting someone to accept the reality of their sickness and also the uncertainty that might come with it?
It’s really hard, and it’s a really complicated dynamic. Most people don’t want to hear that they’re dying, so they don’t listen to their doctors, and most doctors don’t want to tell people that they’re dying.
Because people aren’t primed to hear it, and doctors aren’t primed to say it, what happens is there’s this little complicit dance between doctors and patients and family members. Everyone just kind of tries to scare one another off, so they don’t mention death and they instead lean on euphemisms. You’d be shocked at how many well-educated, thoughtful people come toward the end of their life and find themselves surprised that they’re dying.
A palliative care doctor starts the conversation by getting a sense of where the patient is. What’s their understanding of their illness? I typically invite a conversation with open-ended questions, like “Well, tell me about what’s important to you. Tell me about what you would let go of to live longer.” I get to know the person. When I feel safe with them and we’re speaking the same language, then I can broach the subject of time, and I can say, “Well, you know, because of X, Y, or Z diagnosis, whatever else it is, at some point this disease is not likely to be curable, and we’re going to have to turn our attention to the fact of death. Let’s prepare for it. Let’s plan for it.”
This is where death and life go together very helpfully: The way to prepare for death is to live the life you want. If you start talking to someone about how they want to die, you usually end up landing on how they want to live until they die. That’s a much less scary conversation. It’s a much more compelling conversation for people, too, and it’s more accurate.
Q What matters to most people at the very end?
There are consistent themes around this, which we know from both data and experience:
Comfort is important. Very few people are interested in suffering. Some people are, but most people want to be free from pain.
Most people want to be surrounded by friends and family. They want to be either at home or at a place they call home, a place of their choosing; some people are in the hospital for months, and that becomes their home. The people around them become their family.
Most people are spiritual and have some relationship to a creator, so most people want to be at peace with their god, to be at peace spiritually.
Most people also want to leave their family with as little burden as possible, so that means financial planning, etc. It’s very important to people that they not be a burden to their family unnecessarily.
Q Why do you think as a culture we find it so challenging to talk about death and dying?
You can kind of tell that America is a young place, in part by the way we handle aging and death. We’re terrified of it. Most cultures have been dealing with this a long, long time and have made peace with death as a part of life. Instead of falling back on institutional cultural ritualized knowledge, we’ve outsourced dying to medicine. We leave one another feeling like we’re incompetent at dying, when in fact, we have it in us. We’re just too far removed from it.
In the last 170 years or so, as a society—especially in the health care industry—we’ve been in a long romance with innovation and technology. We believe if you hang in long enough and you work hard enough, everything is solvable. That we can invent our way through anything. You hear people talk, and you realize somehow they’ve absorbed this idea that death is optional, when in fact, of course, it’s not. I notice in my practice when I’m dealing with someone who lives on a farm, someone who is close to nature and its cycles, that they know that death is a part of life. Inherently. They’re around it all day, every day, whether it’s slaughtering an animal or raking up leaves. They haven’t removed themselves from nature’s cycles, so death makes total sense to them. Those of us who are living more technologically driven lives often lose that intuition, that gut feel, and so nature surprises us. Nature scares us.
Part of the problem, too, is what one of my colleagues calls the “medical-industrial complex”: Health care is an enormous business in this country. As long as we decide to consider health care a business and not a civil right, it’s subject to all the fickleness of capitalism and it requires marketing. When I see hospitals advertised to the public as the place where miracles happen, a place where anything’s possible, you know, that’s an advertisement. That’s marketing. That’s not real. We’re not incentivized to be honest with one another in this way.
Q How can you stay in the world and retain a sense of purpose toward the end of life? How much does that matter?
This question of purpose is related to the question of being a burden, and both come up a lot. First, let’s all get better at being vulnerable because we are vulnerable. If you’re in the course of a normal life, any one of us is going to be a burden to someone sometime. It’s just not possible to only give care and not need to receive it. Getting more savvy with needing one another is one way to turn down the pain.
We can also learn to repurpose ourselves. I meet people often who have had a single kind of career or place within their family their whole lives. They’ve had this monolithic role, and as soon as they can no longer perform that role, they lose their sense of purpose. They have nowhere else to go, they have no other interests, they don’t believe they can repurpose themselves, and they lose touch with reality really quick. This is one of the ways we die before we actually die.
But you can find that purpose again, in a different way. I’m working with a family right now, and the mother, she’s about seventy years old, and she’s been a teacher much of her life. She’s been the one in the family who’s always giving care. Now it’s her turn to receive care, and she’s really struggling, and she’s not good at it. She’s gone seventy years without needing much from others, and it shows. In her mind, she’s lost her role as the caregiver. So what we’ve been doing of late is saying, “How can we repurpose your life as a teacher? What can you teach your grandchildren now?” We’re learning she can teach her grandchildren a lot about death. She can teach her grandchildren a lot about being vulnerable and the courage it takes to be vulnerable. She can teach her kids how to communicate with someone who’s suffering. These are enormous lessons, and all of a sudden, she doesn’t feel like she’s being stripped of everything important to her. She’s seeing that she still has some creative life in her and she can take old skills and reapply them in this new way.
Purpose is a powerful force, but there’s value in life beyond purpose. In America, life is all about productivity. You know you’re relevant in this society as long as you can produce, and as your ability to produce reigns, so does your employment and worth. Aging then becomes this process of getting out of the way, and that’s pretty lame. It’s on all of us to see that there’s something bigger to life than our jobs or our single role or whatever it is—life is much more interesting than that. We are much more interesting than that. Another way to help one another repurpose is to actually let go of the need to be so dang productive. Get in touch with the mystery of life and the power of just being at all. That, I find, is a very, very useful thing for people who feel purpose is slipping through their fingers.
Q What advice do you have for family members or loved ones who are helping with end-of-life care?
There are so many layers to this: There are practical burdens, emotional burdens, financial burdens. All need addressing.
Hospice is an incredible service that can dramatically unburden the family. When your health is failing and you need more help with the activities of daily living, family members can step in to do that, or perhaps it’s time to hire a home health aide. But very often what ends up happening is people wait too long to invite hospice into their homes, because they wait way too long to face this reality, and then it’s too late to do much. So one piece of advice I stress to everyone is to think about home health care and hospice early. Even if you think death is years away but are still dealing with a serious illness, call hospice sooner rather than later. Just request an informational interview. Get a sense of what they can do and broach the subject as part of your planning. You don’t have to sign up anytime soon.
The other big emotional piece is to fold death into our view of reality so that we don’t feel guilty that Mom’s dying. It’s always amazing to me how many creative ways we find to feel horrible. I watch family members blame themselves for the death of a loved one all the time, even though there’s nothing that could be done to forestall it. We view death as a failure, and families end up absorbing that sense of failure. It’s heartbreaking. And if there’s one thing we can’t fail at, it’s death. You are going to die. There is no failing.
We all need to get a lot more savvy with grief. Grief is around us all the time. We’re always losing something. A relationship, hair, body parts. Loss is all over the place, and our American way is to kind of pull yourself up by the bootstraps. There’s something to that, but we’ve got to get better at just letting ourselves feel sad. We have to give one another more space for grieving. Grief is just the other side of the coin of love. If you didn’t love someone, it wouldn’t be so hard to lose them. Acknowledge that. Work with it. Let yourself feel it. That will help everybody involved.
We also need to push our human resources programs to help with caregiver education for family members or generous bereavement time off. That’s a big piece of this puzzle if we as a society are going to die better.
Q You’ve spoken before about your own brush with death and becoming a triple amputee. How does that experience inform your work?
Most of us have a kind of a haphazard view of reality that may not include illness or death. Illness and death can end up feeling like this foreign invader, despite the reality that they’re natural processes. My own trauma and illness gave me a wider view of the world that includes that reality, so that I wasn’t ashamed to be disabled. I was normal to be disabled. It helped me understand I was a human being for whom things go wrong. A human being for whom the body dies. That is the most normal thing in the world.
It helped me see myself in my patients and my patients in me. It’s easier for me to empathize with people who are sick and near the end because I’ve been there myself to some degree. But you don’t need to lose three limbs to relate; suffering and illness and death are hard subjects, but at the most basic level, they unite us. We all have some relationship them, and therefore we all have a lot in common.
I’m also aware that because I’m obviously disabled, I think patients, as a rule, give me some credit. I feel like I have an easier time getting to a trusting place with patients. If you take one look at my body, you know I’ve been in the bed, and I do think that is actually a great advantage for me in the work I do.
Q Have you ever felt as though you’ve failed a patient?
To be clear, most days I spend a fair amount of time talking myself out of hating myself, you know, just like most people. I’m deeply, deeply aware of all the things I can’t do or didn’t do today, or that patient I didn’t call in time before they died, or you name it. There is a long daily list of things I have to spend a moment reconciling. Usually it relates to some form of communication: I didn’t quite find a way to break through; I didn’t quite find a way to help them feel safe; I didn’t quite find a way for them to feel seen or understood my me.
Q How can spirituality help someone come to terms with death?
It depends how you define spirituality, but I might define it as a connecting force that we cannot see but have faith is there. That somehow, we’re tied into some creative force that is much larger than ourselves and that is all-encompassing and all-inclusive. If you have a spiritual framework, it’s easier for you to yield to death because you know even in your death you’re still part of something beautiful or enormous. That sense of belonging can do so much for us.
When I found myself near death, and thinking about these things and revisiting my spirituality, it became clear to me that I would be very sad to die. I don’t want to die yet. But what matters even more to me than my life or death is the fact that I exist at all, that life exists at all, and I get to feel part of that, and my death is part of that.
Q Can art play a role as well?
So much of life and death is so powerful and so huge. There’s just so much more to the world and life than what we can find in a word, so the arts can help us kind of get in touch with these larger threads, these larger forces, these things we can’t quite see or feel, a little bit like spirituality.
Expressing yourself artistically can be therapeutic, too. For people going through illness or the dying process, if they’re able to get in touch with their creative impulse and make something from their experiences, that’s an amazing way for them to participate in their life and in their illness. To turn their suffering into grist…something to paint with, essentially. It’s just very rich and fertile ground.
With architecture and design, the way we cultivate our built environment has such power in terms of how we experience life. Standing in a beautiful museum can make you feel things you wouldn’t otherwise and can help you pay attention to things that are really difficult. I would love to see the arts get more involved with the heath care infrastructure so that hospitals and nursing homes are places where you’d actually want to be, places that are beautiful or stimulating. The arts provoke the life in you, and that’s very powerful when the goal is to really live until you die.
Q How do you recommend preparing for death?
Explore a hospice and palliative care program as early as possible. Ask your doctor about it. Research local hospice agencies. There’s a website called getpalliativecare.org, where you enter your zip code and it’ll show you your options. Of course, some programs are better than others, but as a rule, these services are designed to help you suffer less, help you find meaning in your life, and help you live a full life.
Even when you’re feeling exhausted and you just want to hand yourself over to a doctor, you need to find a way to advocate for yourself. Otherwise you’re going to end up in the default mode in the health care system, and that’s going to mean ICU and machines and all sorts of things that you may not want. Your doctor is there to help you, and you need to work with them. But push your doctor: Ask them about palliative care, and if they say, “Oh, you don’t need palliative care,” ask why not. Or if you think you want to prepare with hospice, ask your doctor about hospice. What do they think about hospice? Is now a good time to start it? If they say you don’t need hospice, ask, “Why not? When would I?” Between the medical system and the training that goes into it, understand you need to advocate upstream. You’re pushing a rock up the hill.
Anywhere along the way, start saving money, period. The number one cause of personal bankruptcy in this country is health care costs, and the bulk of those people who go bankrupt because of heath care costs had health insurance. I don’t think people realize even if you have insurance, there are costs that are going to come up that you would never imagine, so if you have any capacity, just start saving. You’re going to need money toward the end of life. You’re going to need money to navigate illness.
Whether it’s in yourself or with someone you care about, reward vulnerability. Be vulnerable. Go toward it. Be with people and yourself when you’re suffering. It takes courage to be vulnerable, to get help and to give help. When it comes to your time, it’s important that you’ve learned how to receive care.
Then there’s the biggest one: Dying ain’t easy, but it’s going to happen, and there’s a lot of beauty in it. The fact that we die is exactly what makes life precious in the first place. You don’t have to love death, but try to have some relationship with it. Think about it. Contemplate it. As soon as you start doing that, the sooner you start making decisions you can live with, and you’ll avoid stockpiling a bunch of regrets. People who don’t think about death just end up assuming they’re going to live forever, until it’s too late to live that life they wanted to lead.
BJ Miller, MD is a hospice and palliative care specialist who sees patients in the Cancer Symptom Management Service of the UCSF Helen Diller Family Comprehensive Cancer Center. After studying art history as an undergraduate at Princeton University, he worked for several years for art and disability-rights nonprofit organizations before earning a medical degree at UCSF. He completed an internal medicine residency at Cottage Hospital in Santa Barbara, where he was chief resident, and a fellowship in hospice and palliative medicine at Harvard Medical School, working at the Massachusetts General Hospital and Dana-Farber Cancer Institute. His forthcoming book with coauthor Shoshana Berger, a practical and emotional guide to dying called The Beginner’s Guide to the End, is due out from Simon & Schuster in 2019.
She’s only seventeen but after battling incurable progressive muscle atrophy for several years, Ankita looks like a ghost already and she knows it. An avid internet surfer, she knows death is very close and there are two questions she’s researching almost obsessively these days. What will happen to my soul after I die? Is there life after death? These are in fact questions which have been of supreme interest for both healthy and ailing people since ancient times. I shared with brave Ankita the recent 4 September issue of Conscious Lifestyle magazine which carries a fascinating article excerpted with permission from “The New Science of Psychedelics: At the Nexus of Culture, Consciousness, and Spirituality” by David Jay Brown, a master’s degree holder in psychobiology from New York University, a former neuroscience researcher at the University of Southern California and author of more than a dozen books. The article shares insights from the world’s top scientific and spiritual experts on whether there is life after death, insights which are so interesting that they’re worth summarisng for readers.
Ram Dass, Psy.D, spiritual teacher, former Harvard professor and LSD research pioneer said as part of his reply, “From a Hindu point of view, consciousness keeps going through reincarnations, which are learning experiences for the soul. I think what happens after you die is a function of the level of evolution of the individual… All the Bardos in the Tibetan Book of the Dead are about how to avoid getting caught in the afterlife… To me, it’s all an illusion—reincarnation and everything—but within the relative reality in which that’s real, I think it’s quite real.”
Mathematician and physicist Peter Russell, author of The Global Brain, said “…a lot of our concerns about life after death come from wanting to know what is going to happen to this ‘me’ consciousness. Is ‘me’ going to survive? I believe that this thing we call ‘me’ is not going to survive… in the end it’s going to dissolve. A lot of our fear of death is that we fear this loss of ‘me-ness’… It’s interesting that people who’ve been through the near-death experiences and experienced this dissolving of the ego and realised that everything is okay when that happens, generally lose their fear of death…”
Pediatric surgeon and physician Bernie Siegel, author of Love, Medicine, and Miracles, said: “I believe in life after death. I think this shows in animals too. There’s a certain wisdom that they have. What I am sure happens to consciousness after death is that it continues on… I personally believe from my experience, for instance, that one of the reasons I’m a surgeon in this life is because I did a lot of destruction with a sword in a past life—killing people and animals… at a deeper level I chose to use a knife in this life to cure and heal with rather than kill with…”
Physician and Consciousness Researcher Larry Dossey, author of Healing Words: The Power of Prayer, said: “…we are led to a position, I think, where we see that even though the body will certainly die, the most essential part of who we are can’t die, even if it tried—because it’s non-locally distributed through time and space… Death is no longer viewed as the total destruction of all that we are… but the thing that really gets my juices flowing is the implication of this research for immortality… The fear of death and whether there is life after death has caused more pain and suffering for human beings throughout history than all the physical diseases combined. The fear of death is the big unmentionable—and this view of consciousness is a cure for that disease, that fear of death.”
Doctor, developmental biologist and psychedelics researcher Rick Strassman’s book DMT: The Spirit Molecule makes a convincing case for the possibility that endogenous DMT in our brains helps to usher our souls in and out of our bodies. His take: “I think life continues after death, but in some unknown form… a lot depends upon the nature of our consciousness during our lives—how attached to various levels of consensus reality it is. My late/former Zen teacher referred to like gravitating toward like in terms of the idea of the need for certain aspects of consciousness to develop further, before it can return to its source. That is, doglike aspects of our consciousness end up in a dog in a life after death, humanlike aspects get worked through in another human, plantlike aspects into plants, and so on.”
Parapsychologist and consciousness researcher Dean Radin, author of Supernormal: Science, Yoga, and the Evidence for Extraordinary Psychic Abilities, said as part of his reply: “… as to some kind of a primal awareness—life after death—I think it probably continues… when you go into a deep meditation and you lose your sense of personality, that may be similar to what it might be like to be dead… If there’s anything that psychology teaches it’s that people are different. So I imagine that there may be as many ways of experiencing after-death as there are people to experience it. And no one explanation is the ‘correct’ one.”
Biochemist, cell biologist and parapsychologist Rupert Sheldrake, author of A New Science of Life, said: “… I think our minds extend beyond our brains in every act of vision… when we die, it’s possible, to my way of thinking, that it may be rather like being in a dream from which we can’t wake up… It’s possible that we could go on living in a kind of dream world, changing and developing in that world, in a way that’s not confined to the physical body. Now, whether that happens or not is another question, but it seems to me possible…”
In Brown’s words, “Death is, perhaps, the greatest mystery known to human beings. While there is compelling evidence that there is life after death and that consciousness survives death, there is also compelling evidence that it does not and the truth is no one knows for sure what happens when we die.” That’s exactly what young Ankita, preparing for death, felt after reading the excerpted bits in Conscious Lifestyle. And yet account after account from a variety of sources underlines the reality of life after death, the reality of other worlds. As parapsychologist Sheldrake theorised, it may be that expectations affect what actually happens. It’s the “may be’s” that will ensure, as they have done down the ages, that the mystery of life and death remains eternal till researchers crack it. But will that ever happen? May be.
David Price is dying, but it’s not the colorectal cancer he was diagnosed with two years ago that is killing him. Doctors removed the tumor shortly after his diagnosis, but Price believes it’s only a matter of time before fate catches up with him.
Rather than let chance decree his date of death, Price, who is a psychologist with an MBA, decided to take the matter into his own hands. About a month ago, he stopped eating and next week, he stops drinking. He expects he will die a week or two thereafter. He faces his death with very little fear and a mental calmness that is peaceful and accepting.
“God has blessed me,” he said. “I have always had a deep faith. I know what’s on the other side.”
Price said he loves the life he has lived, but the current quality of his life was compromised following his cancer surgery. The surgery resulted in having what he calls “a dysfunctional rectum” and as a result, has to use a colostomy bag.
“I will never again have a normal bowel movement,” he said. “I will always wear Depends and I will always need to be close to a bathroom. If I can’t go to the bathroom properly, that’s just not a life.”
While Price said he is “supposedly cancer-free,” he has been told by his doctors he is at a high risk for a recurrence. “Plus, I have multiple health issues that could eventually kill me, including blood clots and hernias. I have epilepsy and I was falling as often as twice a day due to my medications. If I fall and crack my skull and go into a coma, where am I going to be lying for six years? Not at home. I don’t want to be in a nursing home.”
He understands that some people may judge his choice to end his life now, and many people have tried to change his mind. Price also acknowledged that while he believes he is making a rational decision based on his spiritual values and ethics, his choice is unique to him and no one else.
In 2013, the Vermont Legislature passed Act 39, the End-of-Life Choice Law, which allowed Vermont physicians to prescribe medication to a Vermont resident with a terminal condition with the intent that the medication be self-administered for the purpose of hastening the patient’s death. Act 39 set forth conditions for the patient and doctors to be in compliance with the law, including that the patient be capable of making his or her own informed decision. But because he doesn’t have a terminal illness, Act 39 doesn’t pertain to Price.
“I don’t fit the criteria as much as my doctors might like, and they tried their best to convince me otherwise, but all of my medical providers have been supportive of my decision,” said Price, who doesn’t consider what he is doing as suicide. “It’s not extending my death.”
Betsy Walkerman, president of Patient Choices Vermont, which successfully advocated for the passage of Act. 39, said it would be a mistake to conflate Price’s decision with suicide.
“An end-of-life decision is really different from a situation where someone is distressed or has serious depression,” she said. “There are people in the last stages of life who don’t qualify for Act 39 who have stopped eating and drinking. It’s a person’s own choice how to live their life and how to spend their last days and weeks. This is a decision that any person can make and doesn’t require Act 39 and permission from anyone.”
Walkerman said Price’s decision is a demonstration of how people take control of how they die.
“There are so many ways to prolong life as the medical community defines it,” she said. “But whether a person wants that kind of life … it doesn’t sit there in a vacuum. It’s part of the continuum of the evolution of medical care and people’s interest in personal choice.”
Rev. Audrey Walker, of the First Congregational Church in West Brattleboro, said she counseled Price on his decision, and while she advised against it, she understood why he decided the way he did.
“He has reached what I consider to be a very rational decision based on his spiritual beliefs and I support his decision,” she said.
Rev. Shawn Bracebridge, the pastor at Dummerston Congregational Church, met with Price but only as a friend, he said, and he supports Price’s decision as well.
“His decision is his and his alone and it’s grounded in his spirituality,” said Bracebridge.
Medical ethicist weighs in
Arthur L. Caplan, head of medical ethics at the NYU School of Medicine, noted that doctors are required to have a patient assessed if they believe he or she is depressed or otherwise rendered incompetent by a mental health illness.
“If that’s not a concern,” said Caplan, “if Mr. Price is rational, he retains the right to refuse medical treatment. He doesn’t have to accept intervention. In fact, he has a fundamental right to deny an act of intervention.”
Caplan noted that people make this type of decision every day, and by example referred to a Jehovah’s Witness who might refuse a blood transfusion, even knowing it’s a simple life-saving procedure.
“Mr. Price’s doctors might have a good sense that their patient is well aware of what he is doing, that he is coherent and that he is able to comprehend his choices,” said Caplan. “It is the doctor’s duty to try to talk him out of, offer pain control or tailor your care, but that doesn’t mean the patient will be persuaded.”
Caplan also noted that some people with chronic illness who take their own lives are not as deliberate as Price appears to be, who has planned his death in advance after consulting with doctors, his therapist and members of the clergy.
Even when someone has a diagnosed mental illness that is affecting his or her decisions, said Caplan, it can be very difficult to stage an intervention.
“It’s very difficult to force feed someone,” he said. “They could pull the tube out. You would probably have to tie him down. It’s very hard to do with an unwilling person.”
A doctor might refer a patient for a psychological assessment, which could result in a court hearing to decide a person’s fate, but Caplan said courts are often reluctant to get involved in end-of-life decisions.
“Our society leans very hard on honoring individual autonomy,” he said.
Just the same, doctors who are trained to preserve life at all costs do not take it lightly to step aside and let a non-terminal patient die, said Caplan.
“It’s a challenge for them, because they are thinking they can manage epilepsy and they can manage blood clots,” he said. “But they are also trained to respect a patient’s choices.”
“The real issue,” said Caplan, “is not so much is he competent, but does he need spiritual support? Is his quality of life bad because he is depressed or doesn’t have companionship? Does he have friends and a social life?”
If anything that can still be expected from Price’s doctors, said Caplan, is that they stay in contact with their patient and keep checking with him in case he changes his mind and needs medical care.
“I couldn’t have been evaluated more in the past two years,” said Price. “If I was suicidal I wouldn’t be doing this right now.”
Price said his own decision has been informed by his years of practice — especially in the days when there was no treatment for HIV/AIDS — helping people confront their own mortality and helping them “untangle suicide from their sincere desire to end their lives. Most were facing horrible continued pain and suffering.”
‘We don’t know how to live in this world’
Price, originally of Dallas, moved to New England 16 years ago with his then-husband, Michael Lefebvre, to be closer to Lefebvre’s parents, who were ill. They lived in Gardner, Mass., until their divorce in 2008, when Price moved to what he calls his “mountain home” in Westminster West.
“I had all these wonderful plans for retirement,” he said. Instead, said Price, since his surgery he has been diving into his spirituality, studying up on Buddhism and Christianity.
“It’s helped me to realize this is all an illusion,” he said. “All of these material things we grab on to, that we think bring happiness, they don’t bring happiness; they bring us pleasure, momentary pleasure. But they also bring us pain and cost a lot of money. We don’t know how to live in this world. We copy others. I went through all that. I know the lifestyle and it did not lead to happiness.”
Though he has always been a spiritual man, he was not a regular attendee of church. His parents, who still live in Dallas, are Southern Baptists, a denomination with which Price has issues.
“There is a lot of negativity,” he said. “I don’t believe in hate. They don’t call it hate. They think they sit in judgment of the world.”
His parents also did not accept the fact that he is gay. “My family was disappointed in my whole life, not becoming a Baptist and becoming a psychiatrist. To them, mental illness is a sin that can be prayed away.”
The United Church of Christ accepts him as he is, said Price.
“They also accepted me as someone who sees ghosts,” he said. “I didn’t expect to be accepted, but they were like, ‘Yeah, Jesus saw and spoke to spirits.'”
Price firmly believes that all humans have psychic abilities, but not everyone chooses to accept that or practice those abilities and he also believes humans need to be physically close to the earth, touching it with bare flesh as often as possible.
“There is so much energy from nature that we are blocking with our concrete and steel,” he said, which is another reason he wants to die in his mountaintop home and not in a hospital or a nursing home. “I want to be here where I am absorbing the energy.”
‘A very spiritual man’
Price granted his therapist, Supriya Shanti, permission to speak with the Reformer. Shanti has been his therapist since the time Price was diagnosed with cancer.
She said his decision to end his life is not out of character, nor does she believe is it influenced by any mental health issues.
“He is a very spiritual man,” said Shanti. “His decision is a result of his connection to his spirituality, the spirit world and god and his trust and faith in that.”
Shanti noted that Price is a well-respected therapist in his own right and his decision has been informed by his years of offering counseling to his own patients.
“It’s his personal choice,” she said. “Given how he’s been fighting for two years and continues to suffer due to his medical issues, I think it’s his right to choose for himself and I support his choice.”
However, on both a professional and personal level, Shanti said she wrestled with Price’s decision.
“I definitely feel sad on a personal level,” she said. “Professionally, it creates some conflict, because I don’t know if we kept working together, maybe he would make a different decision. But the bottom line is, whoever shows up in my office, it’s my job to support and guide them. I help empower people to make their own decisions.”
Shanti also encouraged people to call and visit Price before he dies, rather than wish they had done so after he is dead.
“David wants company and wants honest conversation,” she said. “Now is the time to visit. It’s really important, especially in the last days of life on this physical plane, to be surrounded by people who love you.”
A necessary discussion
Walkerman said Act 39 and people like Price have ignited a discussion that has been a long time coming.
“He had a discussion with his family, his doctors, clergy,” she said. “A lot of people have trouble even starting these conversations. Any story helps illustrate for people how to have those discussions, rather than suffering alone, thinking they have no choice.”
“It’s important for people who are facing health and emotional crises to take a lesson from this in that you can reach out and get support for your spiritual and emotional needs,” said Susie Webster Toleno, the pastor at the Congregational Church of Westminster West. She said that while she didn’t counsel Price on his decision, they discussed the spiritual aspects of his illness and end of life. “There are people who will answer your phone call, who will listen and provide support,” she said.
Toleno said those people include local clergy members and organizations such as the Brattleboro Area Hospice, at 802-257-0775 (Brattleboro area) 802-460-1142 (Greater Falls area) or brattleborohospice.org.
“Brattleboro Area Hospice has a lot of support for people who are in tough health situations, even if they don’t qualify for hospice,” she said.
Price said if, when he first received his cancer diagnosis, he had the knowledge he has today, he might have chosen not to have surgery to remove the cancer from his body.
“It would have been quick and easy and now here I am, extending my death. But I suspected I wasn’t going to survive. Maybe my family needed time to accept that and maybe I had amends to make. I did a lot of forgiveness work, which is the most important thing.”
If there is one last notion he would like folks to consider challenging it’s the belief that all the world is knowable.
“What we think we know it probably not even one-thousandth of what it out there,” said Price, especially when it comes to spirituality. “Philosophers have been arguing about does God exist for forever. To think that you are smarter than Plato, to me that is intellectual arrogance. Even Einstein said ‘The more I study science, the more I believe in God.'”
Death is a one-way journey into the unknown and, as with any other journey you may have undertaken, it will go smoother if you are prepared as can be. Being somewhat wary of death is natural with even the most spiritual and religious people being saddened at the thought of both their own deaths and the deaths of those they love. The reason death is not generally welcomed with open arms is that, after centuries of trying to understand it, it still remains a great unknown to most of us. This is where mindfulness can be of most benefit – when the uncertainty surrounding death is strongest. By becoming mindful you will likely find yourself not only being more at peace with your situation but able to find joy and happiness in your surroundings even in the final days leading up to your passing. It will also enable you to view death as the inescapable yet strangely beautiful part of life that it is.
Mindfulness may help you to get comfortable with death
The emotional and spiritual acceptance of your own mortality is the greatest gift you can give yourself. Although dwelling on death continuously isn’t healthy, mindfulness can be very effective in reducing the tremendous anxiety we often experience when nearing our time of death. Being mindful of your own death entails you coming to terms with your fate, facing your fears head-on and acknowledging your feelings. As difficult as it may seem, it is important to be at ease with all your varied thoughts regardless of how warped they may seem.
While it is near impossible to eradicate all the suffering involved in dying, it is possible to create a place to positively deal with anger, grief, and denial. Once you become accustomed to practicing mindfulness you will find yourself feeling a lot calmer and ready to live your remaining life to the fullest. In his novella ‘The Canterville Ghost’ Oscar Wilde wrote: “Death must be so beautiful. To lie in the soft brown earth, with the grasses waving above one’s head, and listen to silence. To have no yesterday, and no to-morrow. To forget time, to forget life, to be at peace.” Once you become mindful of your own death, this is how you can perceive their own death as well.
Alleviate your discomfort
Apart from conventional medication and pain-relief strategies, there are a number of holistic approaches that can be employed to alleviate discomfort. Adapting to a sensory experience helps to nurture joy and mindfulness. We are capable of reducing the physical pain we experience when we focus all our attention on what we see, smell, hear, taste or feel. Although this may seem slightly far-fetched, the phenomenon has been documented in a range of scientific studies which includes ground-breaking research by American professor emeritus of medicine Jon Kabat-Zinn. The research showed that stress reduction based on mindfulness can drastically reduce pain as well as the depression and anxiety associated with coming to terms with your impending death. Once again take comfort in knowing that death is as natural a part of life as breathing is, and it is, in essence, nothing to fear.
Make your last days meaningful
We often hear people proclaim that we need to ‘live every day like it is your last’ and to ‘make every second count’ and that is exactly what you need to do as you near the end of your life. You have, after all, only been granted with a single shot at life and the least you can do is to make it as memorable as possible. By being mindful and practicing meditation, you can ensure that you get as much out of a day as is humanly possible. Be careful not to limit your mindfulness and apply it in all aspects of your life. You can even be mindful when eating, paying close attention to the entire process. Appreciate the smell and sight of your food, how it feels when you bring the fork or spoon closer to your mouth and how the food tastes. The same process can be applied to anything from sitting on your porch overlooking the garden to having a relaxing bath. Engaging in simple yet effective daily meditations that focus on breathing and pain reduction can help make someone’s final days substantially easier to endure.
Regardless of your spiritual or religious orientation, you are bound to benefit from engaging in end-of-life mindfulness and meditation. There is no rule book with regards to being mindful – by simply following basic guidelines and applying them to the areas of your life that will benefit the most from it, you will reap the countless rewards that being aware holds. Find solace in knowing that death is merely another journey you are about to undertake and one that you have the option of embracing with the same joy and vigor as you did life.