How many times have you had a dream that involved death? Have you ever dreamed about someone you loved dying or been visited in a dream by someone who has passed away? Though we don’t often talk about them, I’d say that death is a common dream theme—especially this year.
Dreams are, after all, a way for us to process life. And dreaming about death is often a way to process the fear of the unknown. Morbid dreams can show up when we are in the middle of a job transition, a divorce, an identity crisis, or any other kind of major shift. In 2020, we are all going through a transformation on some level. We are all connected, so on some level, we are all affected.
Generally speaking, dreaming about death is likely a sign that you are in a period of change, but here’s how to further interpret this type of dream based on the details.
If you dreamed about a loved one dying:
If you’ve ever had a dream of a loved one dying, you know how utterly upsetting they can feel. You wake up wondering if it’s a premonition, a warning of an accident—you name it. Once this panic is activated, it becomes extremely hard to be objective.
So the first thing I would do if I dream of someone I know dying would be to ask myself if I am afraid of losing that person. If the answer is yes, this dream may have served as a wake-up call about how much this relationship means to me.
Start there and see if your body drops the tension and you stop obsessing over that dream.
If you dreamed about yourself dying:
This can be a very scary dream or a very tranquil dream, depending on its quality. I’ve heard of people who have dreamed that they’ve died and been met by spirits, angels, ancestors, or guides and experience peace. I’ve also heard from people who dream of painful deaths that occur under scary circumstances. So it’s complex, and ultimately the only person who can decode the meaning behind this dream is you. But here is an example of how I would approach a dream like this:
Let’s say I had a dream that I died in the water, drowned when I fell into the sea. If I felt peace and calm in my dream and like my spirit was at rest, I might come to the conclusion that this dream was about a past life.
If I had the same dream but I struggled for air, felt alone and in despair, this would obviously be a bad death. In this case, I would try to remember some more details of the dream. What was the scenario that caused me to fall overboard? Was I pushed? Were large waves washing me away?
I would look for more clues about what the message could be and how this dream could be signifying a different kind of “drowning” in my own life.
If you had a nonsensical dream about death:
When we are processing many emotions at once—fear, sadness, loss, frustration, desire, longing, etc.—our dreams often become giant mashup scenarios. They don’t make much logical sense. One minute, it’s the 1980s and you’re wearing the pants you bought online last week. The next minute your ex from five years ago is there, and suddenly you see your dying fall.
When timelines are mixed, people past and present are juxtaposed, and you can’t put the dream in any logical order, that’s your psyche processing your waking life. That’s the one for the analyst’s couch or the dream books. Its message is always personal and only clear after a lot of inner reflection. If you die in this kind of dream, it’s likely pure fear of change or loss.
If you dream of someone you love dying in a similarly haphazard way, the same criteria apply. If the story is convoluted and the steps are mixed up in time and space—and especially if you wake up instantly emotional and confused—this is not a predictive dream. You might just be feeling scared to lose this person, literally or emotionally.
(I do believe that some highly intuitive peoplecan have predictive dreams, but these tend to be very matter-of-fact, detailed, and orderly. You wake up with a clear, concise flowing story, and you don’t feel emotional about it.)
If you dreamed about someone who has passed away in real life:
If the dream is confusing, has mixed-up timelines, and causes you to wake up feeling sad or confused, it’s likely you processing their loss.
If that person is happy and at peace in the dream, maybe talking to you or showing you something, and you wake up feeling calm, it could have been a visitation from them. And those are the best dreams of all.
Dreams are a common way for us to process our waking life. So most of the time dreams about death are not about literal death but the challenges and unknowns we are facing. Pay attention to the details of your death dreams and how they make you feel for further insights into their messages.
Two years ago, my husband of 18 years took his life. I’m still coming to terms with why.
By Jennifer B. Calder
My charming, brilliant, handsomely dimpled, fun-loving husband of 18 years and father of our three sons, ages 12, 13, and 16, killed himself on July 2, 2018.
He was 46.
Was it situational depression after nearly a year of unemployment following previous decades of professional ups and downs? Was it undiagnosed mental illness? Was it noble devotion? Sacrificial, as his letters suggested? Was it desperation?
Or was it, as our oldest son, Logan, said, “A lapse in judgment?”
Or, as our middle son, Grady, asked, “Did Dad love us too much?”
I think it was some combination of all of these.
How much is the life of a father of three boys and a husband worth? Is there a number that makes sacrificing oneself an acceptable, “viable” idea?
Of course not. It’s absurd.
But this is the scenario in which we find ourselves. Trying to make sense of the nonsensical.
My husband now occupies a sliver of the pie you see on those impersonal fact sheets, the 16% who take their lives due to financial or job problems. We are now a family reduced to a mom and three sons desperately absent a husband and devoted father, trying to untangle this messy knot.
I watched my blue dot move closer to his on the Find My Friends app as I made my way through Watchung Reservation outside our hometown of Westfield, New Jersey.
His dot — the icon a tiny photo of him laughing, taken years ago on a “date night” — had been stationary for nearly an hour. I’d first activated the app around 3:45 p.m.
My last text from him was at 1:25 p.m., when I asked for reassurance that he’d seen my previously ignored text about taking our youngest son, Beckett, to guitar lessons at 4:30 p.m.
“K” was his response.
Not unusual. His messages were often terse. We joked, the boys and I, that it made him feel hip to use the minimum number of letters.
A little before 4 p.m., I checked and saw his photo near a winding road carving through the woods and assumed he was making his way home after spending the day driving Uber, which he was doing to make additional money while job searching.
I returned to writing the story I had due the next day.
I refreshed the app again at 4:20 p.m. or so. I wanted to see how close he was, to see if I should tell Beck to get his shoes on, but his icon had not moved.
I called. I texted. I wondered. No response.
He never showed
So I dropped our son at his lesson and made my way toward him — thinking, assuming, hoping he had taken the extra few minutes between Uber runs to catch a quick nap.
I felt anxious enough, however, not to take the extra moment to IM my boss and tell her I was leaving early
I just wanted to get to him.
He was a big napper
When he worked in New York City, he routinely slept through his train and bus stops on the commute home, texting me to say he was now several stations past our town and making his way back to us.
My most nefarious thought was that he’d picked up some psycho Uber client who had robbed or hurt him.
As I drove, I called my youngest sister in Michigan and one local friend, two of the only people who knew about his attempts to make extra money in this manner (his insistence), and both did their best to quiet my concerns.
“He’s just sleeping” was the mantra I repeated over and over, but as I drove, I scanned oncoming traffic for an ambulance. Something — it was elusive — but something about our last interaction that morning bubbled up and ignited worry in me
I woke earlier than normal and heard Matt come and go from the back door near the garage. I asked about the commotion he was making, and my voice seemed to surprise him. “Oh, you’re up early. I just forgot something,” he said, and he went to leave
I called out in an annoyed, sarcastic tone, “Um, okay. See ya?!” and he stopped and asked me what I’d said.
I heard him take a step toward me in the hall as I was pouring my coffee. I repeated my comment, tossed over my shoulder, because in my pre-caffeine grouchiness, I thought, “God forbid he come and give me a proper goodbye
He hesitated for a moment — a long, silent moment — then turned and left, which I found strange. Normally, a passive-aggressive comment at least got me a kiss on the head.
I forever will be tormented by wondering what might have happened if I had called out an “I love you” instead of a snide comment.
I shrugged and went about my day, thinking of how best to structure my story and hoping the boys would sleep late enough for me to get a good handle on it.
It wasn’t until later that night, after this happened, that I came across our life insurance policy in the “mailbox” we keep at the top of the basement stairs for important bills. And, in the middle of the basement floor, pulled from the dregs of boxes stored in the back closet, I found our bin of important files — birth certificates, marriage license, social security cards, passports, and so on.
The commotion I’d heard earlier came into clear focus.
Matt had been prepping for what he was about to do that day, and when I woke earlier than expected, it interrupted him. A friend graciously theorized that had he come to me and said a proper goodbye, it may have broken the spell of what he had planned
As for me, I forever will be tormented by wondering what might have happened if I had called out an “I love you” instead of a snide comment
Or, conversely, if my bitchy tone made his decision all the easier.
As I drove, I mumbled promises. If I found him unhurt, I would be nicer, kinder
Our marriage had become strained under the stress of yet another job loss, at least the ninth in 18 years of marriage. While polite, we were nearing a breaking point
My queries about a Plan B—a “what do we do next?”—were dismissed.
“It’s under control” was his common refrain, which irritated me, yet none of that mattered as darker thoughts flitted through my mind. I vowed to be a better, more encouraging wife — after, of course, I gave him hell for napping through our son’s guitar lesson while I was on deadline.
I underestimated him.
I underestimated his desperation.
I underestimated our debt to the IRS.
I underestimated his devotion to our boys and his willingness to sacrifice his joy in watching them grow up in order to provide them, in his mind that terrible day, with a potentially stable financial future at the expense of a mentally secure one
I underestimated how much my disappointment with his consistent job losses over the past nearly two decades may have destroyed him.
I underestimated so many things, and for that, I don’t know if I will ever forgive myself.
What if I had been less exasperated? What if I had been more supportive?
What if? What if? What if?
He knew I was nearing the end of my rope. We’d danced this dance numerous times. I’d pull in from grocery shopping or school pickup and see his car in the driveway in the middle of the day. Let go again from whatever job, usually through no fault of his own.
The life of an options trader on Wall Street is precarious, and opportunities grew more scarce as the years rolled past.
We lost our home to foreclosure, along with so many people across the country, after the financial crisis in 2008. A year before that, I went out one morning to drive the kids to school, and my Suburban was missing from our driveway, repossessed for delinquent payments
I went back to work full-time as a writer, but my contributions barely covered the boys’ hockey fees, groceries, the occasional dinner out, and our health insurance.
He refused to talk about the details of our financial life as his unemployment ticked by, month after month.
“I am handling it,” he would say.
And, since he worked in the financial industry, I trusted he did have it under control. This was his area of expertise.
But it angered me. I wanted and expected to be a full partner. It wasn’t that he didn’t know this about me. I didn’t need protection. I have many faults, but being materialist is not one of them. I believe he simply did not want me to worry.
I offered to sell my valuable engagement ring. He wouldn’t hear of it, and that also made me mad.
So, I determined to take the pressure off him and look for a more prestigious, well-paying job. He counterargued that my current arrangement worked well for our family: I was able to work from home unless traveling on assignment, and I had no costs. I never missed a school concert or hockey game, and I made decent money.
His evasiveness and obstruction about our financial position pissed me off. But by that point, nearly everything pissed me off. I didn’t want to create more discord, so I didn’t push it.
“He gave us a great life,” I thought a month or so before this happened, as I looked around our lovely house filled with lovely things, and I wanted, I thought, to tell him this. But I was stubborn, annoyed, and fed up and couldn’t bring myself to thank him.
I also thought, this go-around, tough love might be better.
I was frustrated.
I was frustrated by the consistency of his car showing up back in our driveway during the workday.
I was frustrated by the thought of college in two years for our oldest son while we struggled, renting a house.
But I was mostly frustrated by his refusal to talk about other options, his stonewalling, his insistence that he had things under control.
And now, I guess, it seems he had a plan all along.
When we had our kids, we decided my job would be to stay at home with them. Which I absolutely loved. Not that life wasn’t challenging with a newborn, one-year-old, four-year-old, and neither help nor relatives nearby. It was much more difficult than my previous job running a gallery in New York City. Although I have a master’s degree in art history, my salary would have barely covered daycare for our three boys, and this privately thrilled me.
I was disillusioned with my career by that point. I loved my artists, but I’m more academic in temperament and not a natural salesperson, which made me ill-suited to the commercial art world.
But in hindsight, it seems silly.
Worse than silly — tragic. Placing our family’s entire financial burden on him was ridiculously unfair
After drinking too much wine one night, I told him how proud I was that he was driving Uber while job hunting.
He told me he didn’t want to talk about it.
Maybe he thought I was being sarcastic, but I wasn’t, and I hope — I truly hope — he knew I was sincere
I found him honorable
I encouraged him to tell our boys the truth, but he refused. He felt ashamed and told the boys he was “consulting.”
Worst-case scenario, I thought our marriage might not survive, although all the solutions and future plans I suggested — moving somewhere cheaper, a new career of teaching and hockey coaching for him — involved the five of us.
I wanted us to go to marriage counseling once he found a new job. I didn’t want to pile onto what was already an emotional and stressful time by doing it earlier.
We were a great family, the five of us. Even when our marriage was challenging, as a family unit, we were fantastic.
We truly loved being together. Maybe it was because we had no family close by, but any discord we may have felt with one another as spouses evaporated when the five of us were together. Which was constantly.
We had a blast. The jagged edges of my bossy, Type A personality were rounded out by the easygoing nature of his.
Well, at least in the beginning of our relationship.
Over the years, his inability to walk away from an argument, his inflexibility — although he was often right — was tempered by my more level-headed outlook, and I advised him to better pick his battles (not that he listened much). Still, he could make me laugh at myself and vice versa.
And we laughed a lot.
We joked and teased and made incredible memories together, creating a family shorthand only we understood: random words referencing an entire vacation the summer before, “Choo Choo byeeeeeeee,” and so on. We were an affectionate family, hugging and kissing and sharing “I love you’s.”
Although life at the moment muddied the waters, I believed the detritus would eventually settle. I thought we would return to clearer waters.
Divorce was my worst-case scenario. Our endgame. Not this.
He broke the deal.
On the map, my blue dot eventually, finally, gratefully overlapped with his as I spied my car and pulled into the tiny parking lot on the edge of the woods.
I was in his small BMW, which we’d bought in 2000, before we had our first son, and I parked next to my truck. He earned more money driving Uber in a larger car, hence, he’d taken over my 2006 Suburban.
I immediately knew something was wrong.
He was not in the car.
Either someone had hurt him or he’d gone into the woods to use the bathroom and had a heart attack. The app told me the car had been parked in the same spot for more than an hour, and it was so very hot that day.
Either way, I knew I needed help.
I got out of his BMW and began to dial 911, my heart ticking up in beats, thumping in my ears.
Then I heard the engine of my truck running.
I tried the driver-side door, and it was unlocked. I disconnected with 911 before anyone took my call. Opening it, frigid AC blasted me, a stark contrast to the 105-degree real-feel temperature outside.
I glanced into the back seat and had a moment of pure, gloriously unadulterated relief.
They are seared into my mind, no matter how many times I shake my head to clear the image. His legs, crossed at the ankles, socks and sneakers and, farther up, his khaki shorts and a gray souvenir T-shirt from Anna Maria Island, where we had spent our last spring break.
In half the time it takes to exhale, I felt such extreme happiness and a smidge of annoyance.
He missed taking our youngest son to guitar lessons because he was sleeping while I had a story due, and now he’d made me drive into the middle of the woods to find and wake him.
But almost simultaneously, I saw an enormous brushed-aluminum cylinder tipped on its side. It took up most of the space between the two captain’s chairs in the second row. I would later learn it was a helium tank from a nearby party store — used to make balloons for children’s parties, not death.
I climbed through the front seats and onto his body, following the tube taped to the tank.
I didn’t see his bag-covered head at first; it had tipped back behind the seat as if asleep. A mask over his mouth connected to a tube under the bag, a bag you would use for a roasting turkey, and its string was pulled tight around his neck. I easily ripped it off and slapped his face, his head hanging back and his brown eyes half-opened while I screamed, “No! No! No!”
I could still hear the hissing of gas.
The force of my hand repeatedly striking his face moved his head back and forth and, for a grateful moment, I mistook this as responsiveness.
But then I saw his left arm resting on the canister. The top was yellow and, along the bottom, gravity had pulled the blood down, turning the entire length of it a mottled red.
I redialed 911, screaming, got out of the car behind the driver’s-side door and moved around the back of my truck to the rear passenger door nearest him. I did not feel a pulse but knew I needed to try CPR.
He was so heavy, and although the seat he was in was reclined, it was not flat. I knew that in order to administer CPR, he had to be flat. I tried, but I could not budge him out of the car on my own. Although we were in the woods, we were near a street. I stood in the middle of the road, my hands up, still connected to 911 and implored, screamed for people to stop and help me.
No one did.
As the mom of three boys, I have become, over years of many, many injuries, unnaturally calm in moments of crisis.
But not now.
Precious minutes ticked by as car after car swerved around me, no doubt frightened off by my panic.
The 911 operator kept admonishing me to calm down, repeatedly asked for my location and scolded me for my hysteria. But I had no idea where we were, having taken an odd, circuitous route through the reservation.
My inability to tell them our location only increased my desperation and the sheer horror I felt.
I continued to fail him.
Finally, an older woman with short gray hair and wearing a floral scrub top stopped, took the phone out of my hand, and directed them to our position.
Then another car stopped. And another. I remember one woman had a small child in the back seat, visible through the open window, and I shouted at her to stay in her car. I didn’t want her child to witness this.
The ambulance seemed to arrive quickly. They immediately pulled Matt’s body out of our car and onto the the uneven gravel of the parking lot. No one would let me near him. I can still feel their hands on me, holding me back.
I texted my sister, who had been calling repeatedly and getting my voicemail, two words: “He’s dead.”
She thought I meant it figuratively, that I’d found him sleeping and was irritated to have left my workday while on deadline only to find him napping. She called again, and apparently I answered. She recalls hearing nothing but my screams.
With uncontrollably trembling hands, I called my friend and asked her to gather my boys from their various positions around town. Her hysterics matched mine, and she later said I told her to knock it off, to pull herself together, hide her emotions, and get my kids home, words of which I have no memory.
She did. How, I have no idea, but she did.
I watched them working on Matt on the rock-strewn ground of the parking lot, weeds sprouting behind him, cutting his T-shirt to expose his chest. His body violently lurched over and over from their efforts, but I knew he was gone.
I knew he was gone from the moment I saw his arm in my car.
I had a fleeting hope that they could revive him, at least long enough for the boys to say a proper goodbye in a hospital. I asked where they were taking him and if could ride in the ambulance.
I then had the fear that he would be brought back enough to survive but not enough to actually live, and I didn’t know what to wish for in that moment.
I sat on the bumper of his car, my legs bouncing in hysteric motions mimicking my insides, drinking water a kind bystander had pushed into my hand.
I tried to focus on the bystander, on her commands to take deep, slow breaths, but I couldn’t make my body obey.
I saw Matt through the side door of the ambulance, his body now on a gurney. By this point they were working on him in the rig. His handsome head, with his salt-and-pepper hair, was perfectly framed by that door, like in a movie.
Then, suddenly, they stopped.
Snapping off their plastic gloves, they all stepped away, and he was alone.
It was then, for certain, I knew he was gone.
A howl that did not sound human escaped my body. I remember the noise startled me and it took a moment to realize I was the one making it.
It was 5:19 p.m.
Time of death: a little over a half-hour from when I’d called 911 at 4:46 p.m.
In the car were three letters: one to me, one to our boys, and one to his parents. I hadn’t noticed them during the chaos and my panic. They accompanied his birth certificate, passport, wallet, cellphone, and copies of various bills. From this evidence, I can only assume he never expected I would be the one to find him.
We talked often about odd people he picked up and stories on the news of Uber drivers who had been hurt. I believe he thought I would call the police to check on him before going out to the woods alone, which in hindsight is probably what I should have done.
I’m forever grateful I didn’t go out there with one of our kids.
But it hurts to think he assumed I would not search for him, that he would need various forms of ID for police to tell us he was gone. If it were reversed, he would have hunted for me, and it destroys me that he did not consider I would do the same.
After, I could not speak.
I rotted my throat with my screams for help. Crackly, gaspy sounds were all I could make for days. A bruise covering my entire upper thigh appeared the next day, visible proof of my efforts to drag his body out of our car. I caught myself staring at that bruise over the following days, trying, unsuccessfully, to convince myself there was nothing more I could have done to save him.
I have no idea how much of this is my fault.
The letters, which I was not allowed to read on-site for reasons that still baffle me, were paraphrased by the kind, on-scene chief after I begged and pleaded for some insight.
Not that it helped.
I mean, when I finally read them, word for word, days later, it did.
I understood how he got from A to Z in his mind.
I understood the sliver of the prism through which my husband viewed our lives and future, but I remain perplexed by his inability to recognize how distorted his theory became as it passed through this spectrum.
While he potentially fixed our financial problem, he created a million more that splintered off in bouncing, inaccurate, agonizing directions that were infinitely harder, if not impossible, to solve.
And this makes me so angry. We created three amazing boys who are all on really incredible paths, and I don’t know how I will forgive him if this knocks them off track.
They are this way because they had a dad who loved them so very much, who spent time with them, had conversations with them, valued their opinions. He coached all three of their hockey teams, spent years making memories together with them on the drive to and from chilly rinks.
While unemployed, he dropped them off and picked them up from school, went to the grocery store, and cooked dinners. He played video games with them, tossed a football, made huge breakfasts every weekend.
He adored them. Plain and simple.
He loved them more than anything.
Kids aren’t supposed to be your best friends, and Matt was good at not blurring those lines. He was a disciplinarian, but they secretly were his best friends.
In his letter to them, he oddly signed it “Matt and Dad.” A friend theorized it was because he truly thought of them as his friends, not just his children.
How can your dad taking his own life so that you may have a “better” future not screw you up? The night before he killed himself, we had a family movie night.
The pick, A Quiet Place, was a random selection.
Prior, Matt went to the store to buy microwave popcorn for the boys and made each of them specialized milkshakes. In the movie, at the end (spoiler alert), the dad sacrifices himself to keep his kids safe.
Our boys were upset by this, but we explained that’s the job of a parent. That either of us would do anything to keep them safe in a similar situation.
I have no idea if that triggered a plan he’d long had in the making, but the timing doesn’t make sense to me otherwise.
As dumb as it sounds, he had just received a new batch of plastic cups for his iced coffee. We’d talked about either a beach day or an amusement park for the Fourth of July and had two family vacations planned. This may have been his fallback plan, but I believe its implementation was set into action after the movie that night.
I later learned from the police that Matt rented the helium tank at 8:30 a.m. He was still alive at 1:25 p.m. when he texted me.
This tortures me.
I cannot envision the pain he was in, the courage he was trying to muster, the possible debate he was having with himself, knowing what a horrific idea this was, the damage it would inflict on all of us — but believing without his life insurance policy, our lives were doomed. He thought he ran out of road, which is nonsense.
There is always more road.
He made the choice to kill himself not because he wanted to — if we were financially stable, he would still be here. He didn’t suffer from chronic depression. He sacrificed himself so his family might, in his twisted view on that terrible day, have a chance of a more secure future financially — but a severely diminished one in all the ways that truly matter.
He believed we’d be better off without him.
He also robbed his parents of their only child.
How wrong he was.
In his letter to the boys, he wrote, “You will get past this, you will go to college, fall in love and marry and have families of your own. I hope you can forgive me and understand.”
With every fiber in me, I hope he is right, although I know that is an impossible request.
A loving, present dad is unquantifiable.
The worst moment of my life, finding my husband dead in our car, would be eclipsed by something even more horrific: having to tell our three adored sons he was gone.
The officer, who held my hand the entire ride home, dropped me off down the block, at my request, so the boys wouldn’t see the police car.
Every step I took up our driveway made my legs quake, knowing, as I got closer to our front door, that I was about to cross a line separating “before” and “after,” and nothing would ever be the same.
I have no idea how much of this is my fault.
It could be most of it. It could be if I had been kinder, more supportive, more encouraging, we would not find ourselves here.
It could be the opposite, that nothing I could have said would have swayed him off this course.
It’s all too fresh. I don’t have any answers. And maybe I never will.
All I know for certain is that I am now the solo parent to three extraordinary boys.
Boys who were shaped by a loving and exceptional father.
How can emptiness be so oppressive? Absence hangs darkly in the air, a steadily descending, suffocating pall of grief threatening to choke out the joyous light of life. Obligatory smiles are forced around the family dinner table. Tears are not, falling unexpectedly with flash images of happier times. Death did not take a holiday this year.
This Christmas, the families, friends, and loved ones of the more than 9,000 people who’ve died from COVID-19 in Los Angeles County will struggle with the grief. Loss upon loss upon loss—not only death but job loss, the loss of financial and relationship security, the loss of feeling in control of one’s own life—suffered in silence creates a numbness that can make even the simplest task a struggle.
David Kessler understands and wants to help. During the height of the AIDS crisis, Kessler, the gay founder of Progressive Nursing Services, helped care-providing friends of those dying from the stigmatized disease cope with their fears and grief, later cofounding Project Angel Food with his friend, former presidential candidate Marianne Williamson. Kessler subsequently teamed up and wrote two books with his mentor, psychiatrist Elisabeth Kübler-Ross, who pioneered the concept of the five stages of grief in her ground-breaking book On Death and Dying. After the 2016 accidental overdose death of his 21-year-old son during the opioid crisis, Kessler wrote Finding Meaning: The Sixth Stage of Grief, about “remembering with more love than pain.” On his website Grief.com, Kessler posts helpful videos, including one in which he shares how to heal the five areas of grief, as well as resources and help with myriad feelings not generally associated with grief. He also started a free Facebook group so people can connect virtually.
“It’s really important that we name our feelings because you can’t heal what you don’t feel,” Kessler tells Los Angeles. “People don’t realize that grief is exhausting and that heaviness you’re feeling, that sadness, that lack of motivation—there’s a good chance this time it’s grief. And when we name it, we no longer feel we’re crazy or something could be wrong with us. Grief is a reflection of what’s going on in our life and in the world. And how many losses are there right now?”
Every day in L.A. is a 9/11. “The problem is we can’t see this,” Kessler says. “Because it’s everywhere and there’s no funerals and there’s no visuals. Our mind can’t comprehend what’s really happening. When you look back on the AIDS crisis, the Vietnam war, 9/11—there were caskets and nonstop funerals. We are not seeing that. Now we’re at home. Funerals are rarely happening, and if they are, they’re on Zoom.”
Meanwhile, the comfort of physical contact with loved ones who live outside our households has been temporarily taken away. And we’re subconsciously mourning little things every day. Even discovering that a beloved neighborhood restaurant has shuttered can trigger grief.
So what do we do?
“Part of our work is to try to find a meaning. Now, meaning isn’t in the pandemic. There is no meaning in a horrible death or a pandemic. The meaning is in us,” Kessler tells Los Angeles. “I live on a street here in Los Angeles where I never knew my neighbors. I mean, I kind of waved at the people to my right and to my left, but I didn’t know them. During the pandemic, all of a sudden, we got a whole text chain where we started texting one another. Someone was going to the grocery store. Check on the elderly man at the end of the street because he may need groceries. That was finding meaning. All of a sudden, I saw kids in the front lawn playing with their parents. I’ve never seen them play with their parents. That’s meaning. We’re suddenly, ‘well, it’s so horrible, we can only connect on news.’ But suddenly, we’re talking to people around the country, around the world on Zoom.”
Kessler hopes that people find a lot of new meanings. “Maybe part of the meaning is that we take our government personally. Maybe we make sure that we’re fully in line with our government and the future and that our government really represents us,” he says.
And what of finding meaning during a holiday season in which cheer seems like an insult?
“Love is still important,” Kessler says. “Even if I just have conversations with people I love. Even if I realized that this is going to pass. Sometimes some of those worst moments become the meaningful ones when we’re no longer having superficial conversations with each other. I can’t tell you how many people have said, ‘I just can’t go commercial on a lot of gifts or do that whole thing this year.’ It’s going to be more love than commercial gifts. Maybe we’ll be a little more meaningful this year.”
Standing around in a churchyard and going for soup and sandwiches after a funeral is part of a centuries-old tradition, but we have had to adapt to different grieving measures due to Covid-19, writes Joyce Fegan.
AT THE height of the global pandemic, just 10 mourners were allowed per funeral. When restrictions were eased that number only increased to 25.
Wakes did not happen. There was no gathering in churchyards to shake the hands of the bereaved and no soup and sandwiches in the local pub afterwards to share stories about the life of the deceased.
This curtailment of our oldest and most celebrated ritual has meant that people have not been able to grieve their loved ones nor be consoled by the sympathies of others, as they normally would have been.
Donal Forde has been burying people for 35 years but, in 2020, funerals as he knew them changed.
“They [the public] miss the physical contact of being able to shake hands and hug. There were people who would have always expected big crowds at their funeral and that didn’t happen.
“The general public miss being able to go to funerals. People like to offer their support — just being there and shaking hands can mean so much,” says Donal.
When it was down to 10 mourners only, families found that restriction particularly hard but, with 25, most families could just about manage.
While removals, wakes and refreshments have all stopped, Irish people did different things to pay their respects during the pandemic.
“At the rural funerals, you’d have people on every corner, from the house to church and from the church to cemetery, paying their respects. And in the city, it’s gathering outside the house,” explains Donal.
However, what has had the biggest effect on people, in his observation, is families being unable to be with their loved ones as they die.
“The biggest thing we’ve noticed with families is the not being able to enter into nursing homes and hospitals and the just getting in on last few days. That’s had a big effect on people. Or only one family member has been allowed in,” he states.
The effect has been, people are still upset. It’s hard to know how it will affect them in the long term.
One organisation that flagged the possible side effects of grieving in exceptional times was the Irish Hospice Foundation (IHF).
Orla Keegan is the head of education and bereavement services at the IHF. At the height of the pandemic, the IHF decided to set up a bereavement helpline for people experiencing the death of someone they loved because of Covid-19 or a death from other causes.
They realised that people may also be finding a previous bereavement more difficult at this time.
While so much was “unknown” in March 2020, the helpline was set up and modelled on the “notion of psychological first aid or bereavement first aid”, says Orla.
People of all age groups ring the helpline, from adult children to friends and people in their 20s right up to their 90s.
As head of education, Orla says that the foundation is very clear to “never minimise a loss”.
The longer you’ve had someone, the more you’ve had to lose and mourn. There is a lifetime of memories.
People say: ‘Oh, you get used to loss as you get older’, but that is a myth,” she says.
Orla says that the wake, removal and funeral all serve functions for human beings and each of those have been “disrupted” this year.
“They help us come to terms with the reality of the death, that physical presence. The being there at the time of death helps with that, so too does the funeral. It also helps us feel our pain and have our pain witnessed by the community and, in viewing pain, people want to come towards us to commiserate. It’s part of the social contract.
“It’s showing us the person’s place in the community. You get to really define who that person was; you’re beginning that part of telling the story. You meet people you haven’t seen for years and they’re telling stories you’d never heard — it could be your father’s work colleague.
“So that got a bit disrupted, to put it frankly. People have to find different ways of doing it or they are feeling robbed or cut off from that,” says Orla.
The Christian funeral is of “profound importance to Irish society, allowing a celebration of the life of the deceased,” says historian Dr Marion McGarry.
The rituals surrounding our funerals allowed the bereaved to mourn, grieve and, hopefully, recover in a healthy manner.
She says the purpose of rituals at an Irish funeral is twofold.
“It is a way for the community to mark the passing of one of their members and show sympathy to those who have lost their loved ones,” says Dr McGarry.
For the bereaved, seeing people turn up in this way, gathering together in large numbers to shake hands, acknowledges their grief and can be of great comfort.
Going back hundreds of years, Irish people have had the wake, in various forms, and the sharing of refreshments afterwards.
“In older times, there were many rituals and practices around Irish wakes and funerals. People would ritually smoke clay pipes at wakes, professional mourners or ‘keeners’ were hired to cry over the dead and there were even ‘wake games’ played to keep mourners awake as they sat up with the corpse.
“These customs have fallen away and, while the Irish funeral is more sombre now than it was in older times, it differs little from the past where prayers were said, refreshments were provided, alcohol may have been served, and stories and occasional laughter were welcome,” she explains.
With Covid-19, neither the wake nor the sharing of food and drink were permitted.
“The wake — that allows time spent with the body — can help in the grieving process. The substantial funeral service and burial, with the time taken and numbers involved, are all curtailed. After the burial, time taken to share food with neighbours and friends is no longer allowable,” states Dr McGarry.
Proving the importance of funerals to Irish people is the fact that you don’t just attend funerals of people you know, “there is an unspoken rule that you attend funerals of those closely related to people you know too”.
Case Study: ‘I lost six people this year — I couldn’t even say goodbye to my own mother’
Niall Lynch lost six people this year, including his mother, Ursula Lynch, 93.
She died at the height of lockdown which meant he was unable to see her in the weeks leading up to her death.
It also meant his wife and children had to wait in the car outside the church during his mother’s funeral mass.
Several days later his wife’s father would pass away too, still in lockdown, so it was now Niall who would be watching the funeral on his phone in the car outside the church.
“My mother had dementia, she was in a nursing home in Navan, she died April 6. Vascular dementia shuts down different functions, and her swallow function shut down, so she hadn’t eaten solids in a week. This was the second or third time this happened in nine months, and at 93 you can’t survive too many bouts like that.
“It was in lockdown and my sister was able to visit her through the window, but my mother couldn’t really see her because she had limited eyesight. Then my sister was with her for the last hour, by her side. They called her and said: ‘You’d better get here’.
They met her at the front door of the nursing home, gowned her, and she was given 60 minutes with my mother. She couldn’t touch her. They were being super careful,” says Niall.
Niall last saw his mother on March 13, the day after the first tranche of government restrictions were announced.
So when Ursula passed away on April 6, the full lockdown had been enforced and his family was left grappling with manoeuvring itself through different counties and Government restrictions.
Niall was stopped four times by gardaí on the way to his 93-year-old mother’s funeral.
“It was strange at first, you’re trying to get your head around things and calculate this and that and where can we go, what are we allowed to do. The funeral home was open for max an hour, you had to stay your distance – all the usual stuff you now take for granted was granted.
“And we were travelling from Cavan to Meath, so we worried about that and being stopped by the guards. So I said: ‘I’ll keep RIP up on my phone if guards stop us’, and they did. We were stopped four times and they saw us as a family dressed up,” explains Niall.
Niall was able to see his mother in the funeral home before her mass, and his children were too, so everyone was able to say their goodbyes.
“Just to be able to do that little thing,” says Niall.
As lockdown was so new and so little was known about the spread of the virus, extreme caution was taken, meaning that when Ursula’s coffin arrived at the church, the front door was not open.
“The undertaker had to rap the door and the priest opened the door and said it was locked because he had to make sure it was no one else and that’s why he had it bolted. Only 10 of us were allowed in and I had to give the undertaker a list of those people and he showed it to priest who kept a record.
“The priest led us in and it was quite strange – this large open church with galleries upstairs it was like sitting in the Gaiety with 10 people and you could see the emptiness,” says Niall.
Ursula had six children, meaning there wasn’t room for sons and daughters-in-law, nor grandchildren.
My wife and children sat in the car park and watched it on the parish webcam.
One thing that Niall missed was the Navan tradition of neighbours and friends gathering for the “big old chat in the chapel yard”.
“You’d look forward to that, that was all gone. Now you’re reading comments on RIP and it was just ‘goodbye old neighbours’ and that was as close as you got to locals coming up to you in the chapel yard saying that your mother was an ‘auld native’ and that she was a ‘good one’. My mother would have loved that,” says Niall.
At the graveside, cousins gathered, but again everyone kept their physical distance and as soon as his mother Ursula was buried “there was nothing after that,” as everyone went their separate ways.
Ten days later, Niall’s father-in-law, Tom White, 88, died unexpectedly. He had been up and about walking at home, when he developed a chest infection.
He ended up in hospital but it was arranged that two of his family members could go on a rota and be with him for the last two days of his life.
“They all got to see him, and one of them got to be with him when he died,” explains Niall.
This funeral was a “rural affair” and “people lined the roadsides” as his coffin passed. Again, the 10-mourner rule applied as Tom died on April 15, however, there were far more than 10 in his family as he was survived by his wife Teresa, 10 children and 24 grandchildren.
“I remember the undertaker saying: ‘Between you and me I think I’ve let 11 in’,” says Niall.
At Tom’s graveside, with everyone dotted around with two metres apart, about 19 of his grandchildren joined together in song and sang as his coffin was lowered into the ground.
Niall would attend four more funerals, his aunt, a daughter of a very good friend of his and two first cousins, Declan Reilly, 60, of Swords, Co Dublin, and PJ Lynch, 74, of Clontarf and Artane, Co Dublin.
“We used to check in with each other all the time, we were the three from the three different families that always touched base with each other,” explains Niall.
Both of those funerals took place during the Level 5 restrictions.
Niall has seen both the good and bad in 2020.
“What we used to dissipate our grief with was company and chat and ritual and we’ve not been able to do that, but on the other hand, and it’s strange to say it, but it has been a kind of a gift. We’ve been forced into a space we might not otherwise have allowed ourselves to have – to sit back and contemplate,” believes Niall.
The good and the bad aside, Covid-19 has taught him to express any love or gratitude he has for a person, before it’s too late.
“Too much loss and lack of memory and ‘biting of the holy cords atwain’ is going to affect us all for years. Who knows for the better or the worse? So I know that every phone call I make is a must. I don’t want to lose anyone else without saying ‘I love you, I’m grateful for knowing you, you made a difference’ in whatever way I can say it and without delay.
“Because all we have right now is now. We can only hope that [a life] lived well, will carry us through to some friendlier place. We may someday be grateful, even, for what changes Covid-19 wrought in us”.
Case Study: She mouthed ‘I love you’, and she was gone
Margaret Kelly lost her mother Mary O’Connor (née Duggan), 89, on October 6.
Mary, raised in Frankfield View on the Old Youghal Road, had been living on Capwell Road until her death.
However, Mary, who loved company and “out”, moved in with Margaret for the duration of lockdown.
“Mum lived on her own, but she lived with me and my husband and daughter for March and April, we had her for 12 weeks, it’s a blessing. I finished up work on Tuesday and collected her on the Tuesday evening.
“Her biggest thing was loneliness. She said to me: ‘If I don’t die of Covid I would have died of loneliness’.
“I live in Carrignavar, and we would drive down to the end of the road and she would walk that park every single day during lockdown, it was 350 steps but that was a huge deal to her.
“My husband and I would get up and have breakfast and take the dogs out. When we’d come home, she’d be sitting waiting with her coat on to go for that walk,” explains Margaret.
Unfortunately Mary took a fall on May 23, which resulted in a hip replacement. Mary was taken to hospital by army personnel and because she had been watching the news every night with Margaret and her family, she was well aware of what was ahead of her in terms of no visitors.
Mary recovered from her hip operation and returned home to her own house.
However, in October, she fell ill.
“In October she wasn’t feeling well. My son used to take her out every single Friday for lunch. She loved out, if you were getting the car NCT-ed she’d go with you.
“She was ages opening the front door and this was unusual, when my son got in, she just collapsed into his arms. That was a Friday and she passed on the Tuesday, she was brought into the Mercy Hospital and I got a phone call to say there was no hope, she had pneumonia,” says Margaret.
The fact that it early October, meant that the country was neither in Level 5 restrictions, nor lockdown, so Margaret was able to be with her mother as she passed.
The hospital was also very quiet, so they had peace of mind when visiting Mary.
Margaret describes the experience of her mother’s passing as both “beautiful” and something she is extremely grateful for.
My mum wasn’t talking but she was rubbing our hands and our faces and blowing kisses – that was her down to the ground.
“I said: ‘Mam you need to go, don’t be hanging on for us’, and with that she mouthed: ‘I love you’ and she was gone. There was no drama. It was beautiful and we were with her,” says Margaret.
“My mum’s own mum died when she was six weeks old, and she always had one dream in life and that was to meet her own mother, and at nearly 90, it was still always at the back of her mind. The fact that she was finally going to meet her mum gave us great solace,” she adds.
For the funeral, only 25 people were allowed into the church, but something special happened after the mass, that eased the restrictions.
“When we came out of the church and passed mam’s house, all the neighbours were out. The older people are so respectful and they all had their hands clasped, it was all people could do,” says Margaret.
Although losing her mother during 2020 was “not ideal”, gratitude is one of her overriding feelings.
“It wasn’t ideal, but we are so grateful to the Mercy. We didn’t take being with her for granted, and it has to be said because there are so many people out there who didn’t have that,” says Margaret.
Mary O’Connor was predeceased by her beloved husband Finbarr of 48 years. She is survived by her children Donal, Norma and Margaret, and her four grandchildren Yvonne, Darren, Graham and Leanne.
‘We can’t stay in touch on Zoom, it’s taking away our humanity’
For the first time in human history, in peacetime, we saw funerals physically banned in some countries, and heavily restricted in others.
But marking death and respecting the dead is what makes us human, and what makes us different from every other species on earth.
It is this basic fact that makes funerals extremely significant, says UCC professor of sociology Arpad Szakolczai. His work focuses on social theory, historical sociology, and political anthropology — the scientific study of humanity.
“The origin of human culture is related to burial, marking the dead makes us humans, burials go back half a million years,” says Prof Szakolczai.
“Remembering the dead and burying the dead, is one of the main, if not the most important source of human culture.”
Any time in human history when the dead have not been respected was a sign of breakdown in culture.
“The Iliad ends with Hector humiliating the dead body of an enemy — this is never appropriate,” says Prof Szakolczai.
But in 2020 terms, and in peacetime, he feels strongly about the impact of restrictions on rituals surrounding death.
“Prohibiting burial rituals, not taking proper care of the dead, is a very serious issue,” says the professor.
There are other factors around death, aside from the funeral itself, that have been affected by Covid-19 restrictions.
“Dying at home or with family was the normal condition for humans — that was the way of saying farewell to the dead,” said Prof Szakolczai.
“To discontinue these rituals — I don’t agree at all, it disrupts customs and family ties.”
While this did not happen in Ireland during the pandemic, some funerals were banned in their entirety to stop the spread of Covid-19 in other countries.
Prof Szakolczai describes this practice as “quasi- apocalyptic”.
“Death was also about the departing soul being given some kind of rest. What happens to people who are not buried properly? It’s quasi-apocalyptic, it’s not an enlightened condition.
“There is a problem that we don’t take care of the dead.”
In Ireland in particular, out of many countries in the world, funeral and burial rituals have all been “preserved in an exemplary manner”.
“It’s an important custom that has stayed on, but now it’s interrupted,” says Prof Szakolczai.
However, we have been able to attend people’s funerals virtually. Does this not go some way to creating ritual around death?
Prof Szakolczai says “virtual reality” is not a real connection, and our physical presence is most important when it comes to death.
“Virtual reality — that’s another kind of issue, the importance of presence and concreteness cannot be underestimated when it comes to death,” he says. “Virtual reality is the elimination of presence and the delusion of family ties, that’s not a real connection.
“You can’t spread holy water through the internet.”
Physical presence is fundamental to our humanity, states the professor.
“It’s nonsense that we can stay in touch on Zoom, it’s taking away our humanity. It’s an extremely serious issue.
“We are human, we are not competitors of artificial intelligence.”
With all the advances in science and proliferation of knowledge, death still remains “this big mystery” to human beings.
“We don’t have a scientific answer about what survives after death, and this is what human beings have always thought about, it has never gone away,” says Prof Szakolczai.
Many anthropologists consider death, not birth, the most important turning point of human life.
Birth is an event, and it is hugely significant for the parents, but there are very few memories associated with the new life.
Death is the opposite.
“Birth involves a limited number of people, and there are not many memories when a new born baby is very little,” says Szakolczai. “However, when someone dies, everything that person lived through and who they interacted with come together.
“Death and funeral rituals show that we care about us, family and friends and colleagues and people. It’s crucial to keeping society together, and it is among the most important rituals for human life — and that [belief] is shared by historians, archaeologists, and anthropologists.”
Prof Szakolczai says he hopes that the interruption of social practices, such as funerals, and the disruption of human relations, through social distancing, will not continue for much longer.
“We shouldn’t get used to this, that’s the point. If a generation is brought up like this, what is the effect?”
COVID-19 doesn’t discriminate by race, yet it has still laid bare the brutality of racism in the United States
By Patrice Peck
All skinfolk ain’t kinfolk, but as Black people in America, we still feel a connection with one another. A reciprocated smile as we pass one another on the street; a spontaneous, but still synchronized, “Swag Surfin’” dip at the club; a “Cupid Shuffle” kick at the cookout. Small moments like these reinforce the bond I feel with other Black people. But these days, as I quarantine at home, the Black faces sparking that sense of familiarity are not nodding in solidarity or swaying in unison. They stare back, frozen in photographs accompanying obituaries that announce yet another Black life lost to the coronavirus. I do not know these people. I am not even one of the 31 percent of Black people in America who personally knows someone who has died of COVID-19. But in these faces I see my loved ones. I see myself.
I thought of these obituaries last week, when the United States passed yet another grim pandemic milestone. More than 50,000 Black Americans are now dead from COVID-19, according to data from the COVID Racial Data Tracker, a collaboration between The COVID Tracking Project at The Atlantic and the Boston University Center for Antiracist Research. (And even that number is likely an undercount: We don’t know the race or ethnicity for roughly 20,000 of the 319,000 Americans whose lives have been claimed by COVID-19.) Everyone in the U.S. is at the mercy of the coronavirus; it doesn’t discriminate by race or class or gender or age. And yet, from the very beginning of the pandemic, the virus has exposed and targeted all of the disparities that come along with being Black in America. We are dying at 1.7 times the rate of white people from this virus, which means that the toll of these disparities has never been easier to quantify: 19,000 Black people would still be alive if not for systemic racism.
For centuries, Black people have spoken about the struggles we face, pointing to root causes like poverty, housing segregation, unemployment, and environmental degradation. And for centuries, those concerns have largely gone ignored. The same thing has happened with the pandemic. Long before any data confirmed our worst fears, Black people knew that the coronavirus would disproportionately devastate our already vulnerable communities. Driven by that foresight, I launched a newsletter, Coronavirus News for Black Folks, in early April. As the death toll crept up and up, the brutality of American racism became even clearer. Black people with clear symptoms of COVID-19 were turned away from receiving tests, sometimes on multiple occasions, only to die at home. Black families were entirely destroyed as members died within weeks and days of one another. By the end of July, twice as many Black children as white children had died of COVID-19: In Michigan, the first child to die from the virus was a 5-year-old Black girl who spent two weeks on a ventilator.
While a large swath of Americans, myself included, are able to safely stay at home, Black people are disproportionately essential workers, who have no choice but to brave the pandemic and head to work. Many have lost their lives working jobs they felt were unsafe and underpaid. “Our white executive director has not been in the office for the past six weeks, has not asked how any of us are holding up, and has not emailed us to say thank you,” a 20-something security guard told me in April. “I feel betrayed. I used to love my position and the people I work with. Now I’m resentful of the protection some people are afforded while others, like myself, are sent out to the front lines.” (The security guard was granted anonymity for fear of professional reprisal.)
As if the havoc wreaked by the virus weren’t already bad enough, the racial disparities will persist as the U.S. works its way out of the pandemic. Just as one in three Black people knows someone directly who has died from COVID-19, one in three Black people has said they will not get the vaccine, according to a recent Kaiser Family Foundation study. Clinical trials have shown that the vaccine is safe and effective, but a long-standing mistrust in America’s predominantly white medical institutions is only deepening, and so the number of Black lives lost to this virus will continue to rise, even though we now have a way to end it.
Thankfully, moments of Black kinship still emerge even during all the suffering. The same week that marked more than 50,000 Black deaths saw a horizon of hope. Sandra Lindsay, a Jamaican-born nurse in Queens, New York, became the first person to be vaccinated in the United States, after receiving the shot from Michelle Chester, also a Black woman. Even a pandemic can’t break the resilient bond of Black America.
A deadly worldwide pandemic has helped to expose pitfalls in a broken health care system, drawing increased awareness and attention around the delivery of serious illness and end-of-life care, according to hospice and palliative care experts speaking at End Well’s Take 10 virtual conference.
The virus has claimed more than 1.6 million lives globally since its onset, according to a recent World Health Organization report which stated that the United States continues to bear the brunt of the pandemic’s effects, accounting for 86% of new deaths worldwide in the last week alone. According to a number of health care stakeholders, the government and the health care system itself hasn’t sufficiently adapted to meet patients’ needs during the crisis.
“We’ve been putting our elderly and disabled in solitary confinement for months, and that was understandable during the first few weeks where we didn’t understand anything about the virus or how to keep people safe. We saw entire units where elderly people and disabled people died, but now we know how to keep people safe,” said Atul Gawande, M.D., a surgeon, writer and public health leader, at the End Well event. “I myself have family with serious health issues and they need long term care, but we’re told we have to sign away the possibility that we’d ever see them again, that we’d ever hug them again and that’s just unacceptable. They won’t provide the [personal protective equipment (PPE)] and the training to make such things as possible, and that is outrageous.”
Gawande is founder and chair of Ariadne Labs, a joint center for health systems innovation, and of Lifebox, a nonprofit organization aimed at making surgery safer globally. He is also co-founder of the Massachusetts Serious Illness Care Coalition and serves as board chairman of Haven Healthcare. Gawande is among the providers calling for fundamental changes to the health care system.
A key component of that change would be to promote end-of-life and goals-of-care conversations among patients and families. Gawande cited surveys conducted by the Massachusetts Serious Illness Care Coalition, an organization he founded, which indicated that only about 50% of people who have a serious health condition have discussed their wishes with their loved ones. Only 25% have had such conversations with their clinicians.
“When they have those conversations they’re not at all confident that those wishes will be followed. That should be an outrage,” Gawande said.
COVID-19 has disrupted the health care system as providers faced lack of protective resources, staffing issues and revenue losses. Hospices have been pummeled by the disease’s spread, taking hits to operations and finances and facing difficulty accessing facility- and community-based patients.
Some of the roadblocks to quality end-of-life and serious illness care often stem from social determinants of health, lack of awareness around hospice care, and racial divides in accessible care. While these issues are gradually coming to the forefront of discussions in the end-of-life space among clinical, business and policy leaders, stakeholders are renewing calls to accelerate a reorientation of the health care system towards patient-centered, goal-concordant care.
“We all deserve a system that we’re not just tolerating,” said Mark Ganz, president and CEO of Cambia Health Solutions at the End Well Take 10 event. “Let’s resolve as we accelerate out of this curve called 2020 that we take some of the difficult things we’ve seen and talked about and we turn it into a thing of light. We have the opportunity to invent the systems that allow us to truly see the patients and their loved ones in a new way. We need to act and act now.”
When both of my parents entered medical crisis in a short span of time around age 90, I realized that the end of their lives was in the foreseeable future. I had never envisioned what the end of life process would be like, but I knew that I would not allow them to suffer, and that I would protect their dignity. One of my greatest concerns was whether or not I could deliver their wishes for a dignified peaceful death.
I had heard of death with dignity, but honestly I did not know what it was. I had only heard what others said: that it offered a suicide pill, that it was risky to allow people to kill themselves, that there would be no regulation and that it would become too easy to access. I quickly realized that the words chosen were, at minimum, emotional and sometimes escalated to highly charged.
Curious, I attended a presentation a friend delivered for local college students studying geriatrics. I was stunned at what I learned about the medical aid in dying (MAID) program that she was spearheading. The program was not any of the things that I had heard. The guidelines were strict, the oversight even stricter and the eligibility criteria very specific and demanded proof of the patient’s mental capacity.
Most surprising to me was the fact that approximately 30 percent of patients never take the medication. They either die of natural causes before the medication has been delivered or before their planned administration date, or they change their minds as they didn’t experience the anticipated decline in the quality of their life and chose to die naturally. In essence, the program gave the patient control over their own end-of-life experience.
Then recently, I listened to Deborah Kan interview Kelly Bone, who has been diagnosed with early onset Alzheimer’s and who hopes to utilize the services provided by death with dignity, which is currently unavailable in the United States to those diagnosed with dementia. The interview illuminated the misunderstanding and inaccurate terms that surround the topic of death with dignity: euthanasia, assisted suicide and medical aid in dying.
Euthanasia is performed, and medication administered, by a trained professional with explicit consent and is illegal in most countries, including the United States. Assisted suicide is a process during which the patient plans for administering a medication to themself. Death with dignity, also referred to as medical aid in dying, allows terminally ill adults to request and, after being deemed qualified and mentally capable, receive a prescription for medication that they may choose to take to bring about a peaceful death.
Dr. Grube, National Medical Director for Compassion and Choices, wrote in a column titled, Ten Facts About Medical Aid in Dying, “Language matters: medical aid in dying should not be called ‘suicide,’ or ‘assisted suicide’.” He continued, “Legally, in all jurisdictions where medical aid in dying is authorized, ‘it is not suicide, homicide, euthanasia, or mercy killing’.’”
While those opposed to the service tend to define it based on who administers the life-ending medication, the medical community defines it on the characteristics of the people who take those actions.
In the Ten Facts article, David Pollack MD, a psychiatrist at Oregon Health & Science University School of Medicine in Portland, OR, stated that a “growing body of evidence clearly distinguishes the characteristics of persons who (die by suicide) resulting from mental illness from those of terminally ill persons who request medical aid in dying.
“These differences include the type and severity of psychological symptoms, degree of despair, reasons for wishing to end one’s life, communicativeness regarding their wishes and fears, degree of personal isolation, openness about the wish and intended method to end one’s life, and the impact on the person’s family or support system following the person’s death.”
I wondered about the difference between suicide, the intentional taking of one’s own life usually as the result of mental illness and often with a feeling of hopelessness, and consciously choosing to end your life once certain criteria have been met, such as functional limitations, in order to preserve dignity during the end of life process. Medical aid in dying does not involve suicidal tendencies or the desire not to live. It cannot be executed spontaneously but instead requires due diligence by multiple medical practitioners, under strict legal purview, and the legal prescription of medication prepared by a licensed pharmacist.
One is an event involving isolation, desperation and trauma, resulting in physical death. The other may be inclusive, allowing the patient to be surrounded by family and love, and is aimed at creating a peaceful transition at the end of life. The decision to suicide is final, while the decision to pursue medical aid in dying provides an option, not a mandate. Even after having received life-ending medication, the patient can change their mind if their personal criteria are unmet, such as declining physical or intellectual health that the patient perceives would cause a loss of dignity.
Because Bone is ineligible for death with dignity in the United States, she was asked whether she considered suicide as an alternative. She said, “To me, that is not dying with dignity. Going and doing it somewhere in my house all clandestine, not being able to say goodbye to my husband and leaving him with all that guilt, having him find the body and things like that, that to me is not a good way to go. It’s not fair to my family members.”
To Bone, “dignified” is consciously making the decision and discussing it with her family members and doctors. During a personal call with Bone, she added: “I don’t want to suicide — I love my life!”
In the end, the option for medical aid in dying is all about dignity. Dignity is the state of being worthy of honor or respect. To provide dignity is a kind of grace, a kindness or mercy. When one wants to die with dignity, is it not really the grace and the mercy it offers that is sought?
I wasn’t interested in understanding the language surrounding death with dignity until I had taken the walk to the end of life with several loved ones, while fearing that I could not deliver the dignified death they desired. Understanding the words doesn’t mean that I have to like or dislike the option, only that I now have the clarity to make informed decisions that fit my beliefs. It grants me the compassion to accept the reasons why someone else might want to make that choice. I understand that all Kelly wants is to have the option for a peaceful end of life if her disease progression doesn’t allow for it.
I think that everyone wants a peaceful end of life. I don’t know what decisions I will make when I am faced with my end of life, but I know that the end of life deserves the dignity, as well as the grace and mercy, that our culture so readily denies it.