Category: Talking about death

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The power of language

Explaining dying and death to kids

When we told the kids that we lost grandpa last night, our 5-year-old immediately jumped up and started trying to find him.

Adults tend to use euphemisms, or “code words,” to talk about illness, dying and death. They often do this to soften the news they’re sharing. This can be confusing for children in ways that you might not expect. Because their experience of sickness is usually minor like a cold or ear ache, they may not understand the illness is serious. Or they may not understand the person has died and won’t move or breath again.

This table provides suggestions of clear words and phrases to use.

Explaining life-limiting illness

I explained to the kids that even though I really wanted to play with them and walk them to school the way I used to. I can’t because of the cancer.

More than a cold
When adults explain that someone is sick or ill, children might think this is much the same as an everyday cold or flu. For this reason, it’s important to name the illness or condition. 

Name the illness
Use the words cancer or heart attack. This:

  • Helps even the youngest children understand this is different from a cold or flu.
  • Gives children a name for the changes they are seeing in the person.

My dad is much more tired than usual because of the cancer.

  • Decreases the opportunity for misunderstandings.

Uncle Rob has an illness called cancer. It started in his lung so it’s called lung cancer. Cancer isn’t like getting a cold or the flu. It doesn’t spread from one person to another. Cancer doesn’t work that way. You can still touch mom, hug mom, share food with mom, and you won’t get cancer from her.

Explain the impact
Use clear language to explain how the illness is affecting the person. For example:

Aunt Barb has an illness called ALS. It’s causing her body to not work properly.

If the illness is affecting the person’s thoughts and behaviours, let your child know this:

You may have noticed that your grandma has been acting differently. I’ve noticed that she gets angry more easily. This is because the cancer is in her brain, and this changes her mood and behaviour.

Outline how to behave
Let them know if they need to behave differently than usual when they are with the person who is ill:

I know one of your favourite things is to get in my lap and read stories. Because of the cancer in my bones, I can’t hold you on my lap like I used to, which I feel sad about. Let’s try lying beside one another instead.

Explaining dying

Telling Emma that I’m dying was so hard, but it was important to me that she was prepared for the changes she’s going to see in me as I get closer to death.

When the body dies, it never works again
Your aunt has a lot of cancer in her body, which is causing her body to not work properly. The cancer is stronger than all of the medicines that can be used to try to get rid of cancer. Eventually your aunt’s body will stop working, and her body will die. When the body dies, it never works again.

Address common misunderstandings

  • Sometimes children worry that talking about dying makes it more likely that the person will die. Reassure them that this isn’t so.
  • Let them know that the person who is ill isn’t dying because they didn’t “fight hard enough” or “try hard enough” to stay alive.
  • If it’s true, explain that they very much want to stay alive, but unfortunately the illness is too strong.
  • If the illness is one that not everybody dies from, explain this to your child. For example, Grandma may be dying from cancer but Aunt Shahina also has cancer but is not dying from it.

Explaining death

We totally confused our kids by trying to explain the afterlife without first explaining what happens to the body when someone dies.

We worried about how much to tell the kids. We didn’t want to scare them with too much information.

Where did he go?

It’s important to use the words dying and death. Passed away or passed on can be confusing and too abstract for young children to understand. If we say that we lost grandpa or mom is gone, children often wonder:

Gone where?

Why aren’t we looking for him?

Did I do something to make her leave?

When is she coming back?

Explaining to young children

Start by explaining what happens to the physical body.

When a body dies, it stops working and can never work again.

The body doesn’t think or feel anymore so it doesn’t get cold or hungry and it can’t feel pain.

The body can never come back to life.

It’s best to explain that “the body” includes the person’s head. Young children often think that “body” means from the neck down – and so they may mistakenly imagine the body of the person who has died with no head.

To show them the difference between being alive and dead, ask them to jump up and down, breathe in and out, and feel their own heart beating.

When a person dies, they can’t jump around, they stop breathing and their heart can’t beat or work anymore.

Discussing cause of death

If your child asked what caused the death, give an honest and simple explanation.

Your sister was hit by a car. Her body was so injured that she died.

Your uncle had a heart attack. This caused his heart to stop working and he died.

Unless they ask, you don’t need to describe what happened in detail. If they do ask, let their questions guide which information to give, and answer them honestly.

How these conversations help

As difficult as these conversations were, they’ve actually brought us closer together. I feel the kids trust that I’ll include them when hard things are happening in our family.

  • When you’re willing to discuss difficult topics, your children learn that:
  • Hard conversations can happen safely.
  • They’re a valued member of the family.
  • They can talk with you about life’s most challenging experiences.

Complete Article ↪HERE↩!

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How to prepare yourself for a good end of life

By Katy Butler

My parents lived good lives and expected to die good deaths. They exercised daily, ate plenty of fruits and vegetables, and kept, in their well-organized files, boilerplate advance health directives. But when he was 79, my beloved and seemingly vigorous father came up from his basement study, put on the kettle for tea, and had a devastating stroke. For the next 6½ years, my mother and I watched, heartbroken and largely helpless, as he descended into dementia, near-blindness and misery. To make matters worse, a pacemaker, thoughtlessly inserted two years after his stroke, unnecessarily prolonged his worst years on Earth.

That was a decade ago. Last month I turned 70. The peculiar problems of modern death — often overly medicalized and unnecessarily prolonged — are no longer abstractions to me. Even though I swim daily and take no medications, somewhere beyond the horizon, my death has saddled his horse and is heading my way. I want a better death than many of those I’ve recently seen.

In this I’m not alone. According to a 2017 Kaiser Foundation study, 7 in 10 Americans hope to die at home. But half die in nursing homes and hospitals, and more than a tenth are cruelly shuttled from one to the other in their final three days. Pain is a major barrier to a peaceful death, and nearly half of dying Americans suffer from uncontrolled pain. Nobody I know hopes to die in the soulless confines of an Intensive Care Unit. But more than a quarter of Medicare members cycle through one in their final month, and a fifth of Americans die in an ICU.

This state of affairs has many causes, among them fear, a culture-wide denial of death, ignorance of medicine’s limits, and a language barrier between medical staff and ordinary people. “They often feel abandoned at their greatest hour of need,” an HMO nurse told me about her many terminally ill patients. “But the oncologists tell us that their patients fire them if they are truthful.”

I don’t want this to be my story.

In the past three years, I’ve interviewed hundreds of people who have witnessed good deaths and hard ones, and I consulted top experts in end-of-life medicine. This is what I learned about how to get the best from our imperfect health care system and how to prepare for a good end of life.

Have a vision. Imagine what it would take you to die in peace and work back from there. Whom do you need to thank or forgive? Do you want to have someone reading to you from poetry or the Bible, or massaging your hands with oil, or simply holding them in silence? Talk about this with people you love.

Once you’ve got the basics clear, expand your horizons. A former forester, suffering from multiple sclerosis, was gurneyed into the woods in Washington state by volunteer firefighters for a last glimpse of his beloved trees. Something like this is possible if you face death while still enjoying life. Appoint someone with people skills and a backbone to speak for you if you can no longer speak for yourself.

Stay in charge. If your doctor isn’t curious about what matters to you or won’t tell you what’s going on in plain English, fire that doctor. That’s what Amy Berman did when a prominent oncologist told her to undergo chemotherapy, a mastectomy, radiation and then more chemo to treat her stage-four inflammatory breast cancer.

She settled on another oncologist who asked her, “What do you want to accomplish?” Berman said that she was aiming for a “Niagara Falls trajectory:” To live as well as possible for as long as possible, followed by a rapid final decline.

Berman, now 59, went on an estrogen suppressing pill. Eight years, later, she’s still working, she’s climbed the Great Wall of China, and has never been hospitalized. “Most doctors,” she says, “focus only on length of life. That’s not my only metric.”

Know the trajectory of your illness. If you face a frightening diagnosis, ask your doctor to draw a sketch tracking how you might feel and function during your illness and its treatments. A visual will yield far more helpful information than asking exactly how much time you have left.

When you become fragile, consider shifting your emphasis from cure to comfort and find an alternative to the emergency room.

And don’t be afraid to explore hospice sooner rather than later. It won’t make you die sooner, it’s covered by insurance, and you are more likely to die well, with your family supported and your pain under control.

Find your tribe and arrange caregivers. Dying at home is labor-intensive. Hospices provide home visits from nurses and other professionals, but your friends, relatives and hired aides will be the ones who empty bedpans and provide hands-on care. You don’t have to be rich, or a saint, to handle this well. You do need one fiercely committed person to act as a central tent pole and as many part-timers as you can marshal. People who die comfortable, well-supported deaths at home tend to have one of three things going for them: money, a rich social network of neighbors or friends, or a good government program (like PACE, the federal Program of All Inclusive Care for the Elderly).

Don’t wait until you’re at death’s door to explore your passions, deepen your relationships and find your posse. Do favors for your neighbors and mentor younger people. It doesn’t matter if you find your allies among fellow quilters, bridge-players, tai chi practitioners, or in the Christian Motorcyclists Association. You just need to share an activity face-to-face.

Take command of the space. No matter where death occurs, you can bring calm and meaning to the room. Don’t be afraid to rearrange the physical environment. Weddings have been held in ICUs so that a dying mother could witness the ceremony. In a hospital or nursing home, ask for a private room, get televisions and telemetry turned off, and stop the taking of vital signs.

Clean house: Hospice nurses often list five emotional tasks for the end of life: thank you, I love you, please forgive me, I forgive you, and goodbye. Do not underestimate the power of your emotional legacy, expressed in even a small, last-minute exchange. Kathy Duby of Mill Valley was raised on the East Coast by a violent alcoholic mother. She had no memory of ever hearing, “I love you.”

When Duby was in her 40s, her mother lay dying of breast cancer in a hospital in Boston. Over the phone, she told Duby, “Don’t come, I don’t want to see you.” Duby got on a plane anyway.

She walked into the hospital room to see a tiny figure curled up in bed — shrunken, yellow, bald, bronzed by jaundice, as Duby later wrote in a poem. Duby’s mother said aloud, “I love you and I’m sorry.”

Duby replied, “I love you and I’m sorry.”

“Those few moments,” Duby said, “Cleared up a lifetime of misunderstanding each other.”

Think of death as a rite of passage. In the days before effective medicine, our ancestors were guided by books and customs that framed dying as a spiritual ordeal rather than a medical event. Without abandoning the best of what modern medicine has to offer, return to that spirit.

Over the years, I’ve learned one thing: Those who contemplate their aging, vulnerability and mortality often live better lives and experience better deaths than those who don’t. They enroll in hospice earlier, and often feel and function better — and sometimes even live longer — than those who pursue maximum treatment.

We influence our lives, but we don’t control them, and the same goes for how they end. No matter how bravely you adapt to loss and how cannily you navigate our fragmented health system, dying will still represent the ultimate loss of control.

But you don’t have to be a passive victim. You retain moral agency. You can keep shaping your life all the way to its end — as long as you seize the power to imagine, to arrange support and to plan.

Complete Article ↪HERE↩!

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Anticipatory Grief

What do we feel when a loved one is in the very last stage of their lives? What do people who are dying feel when they realize that their time here is nearly over? That process – emotional grief is what we refer to as anticipatory grief. It is the anticipation and grief reaction to understanding that someone or yourself are about to die. Not specifically in the next few moments, but in the months to come. In this post, we discuss anticipatory grief and the grieving process.

What is Anticipatory Grief?

Anticipatory grief is the emotional response to the pending death of a loved one. It is a very powerful form of grief and occurs both in the loved ones of someone who has a terminal illness and in the person who is suffering that illness.

This is a response to the realization that that person or yourself is going to die and that the hope of being cured has diminished. Anticipatory grief is not always about the actual loss of life. It can accompany a major change in peoples lives such as having to have a limb amputated or when a woman must have a mastectomy and feels that her femininity is dying.

What Are the Signs and Symptoms of Anticipatory Grief?

There are five stages of grief and those include:

  • Denial – Sometimes when faced with death, we deny that the situation is as serious as it is. We cannot accept that death is a possibility or that someone who is dying will eventually die. Instead, we might push them to try harder or resent them silently for not trying harder or resent those around them for not trying harder. “If only” statements are common. If only, I had done more… If only I had taken the time… If only I had talked to the doctor…
  • Anger – Anger can be uncontrollable and rage-like. It can be directed at the person who is dying or at the people caring for that person – doctor, caregivers, etc. The response is after an accusation and can be violent – physical or emotional – outbursts.
  • Bargaining – There is the thought that you can make a deal in exchange for something more. ” I can give you more money if you give me better medication – strong chemo, etc. The idea of death is not solidified at this point. There is still the desperate clinging to hope for things that have not yet been identified or discovered – A new drug, a new procedure, a new chance.
  • Depression – We understand now and the regrets of what we have said, the time we have wasted, the little things that mean nothing are now a weight that pulls us downwards. For those who are about to lose a loved one, this depression may cause us to not want to see the person, or to take the blame for their loss upon ourselves. These are darker emotions.
  • and Acceptance – We have accepted the fact that nobody is to blame, that there is nothing left to bargain for, and that despite our sadness we or our loved one is going to die. It is a calming of the angst that we have felt. It is often a recognizable and reconciliation period we discuss forgiveness or give permission to someone we love so that they can die. It is about dignity and hope and while sad, is an uplifting from the depressed period through which we have passed. It is a coming to terms with death and the loss and sometimes it is a deeper understanding of what death is – a part of life.

Coping with Anticipatory Grief

One of the first things to understand about anticipatory grief is that it is a very normal process. You have not done anything wrong. The fact that you are grieving means that you care.

Be willing to talk with other people about what you are feeling. In Hospice, the idea is to treat the entire family because anticipatory grief is very powerful. If hospice is not available, talk to your clergy or begin to see a therapist. There are support groups that can help and many are free of charge.

Talking is a release and grief is very much like a deep pressure that we contain until we explode. Talking relieves that pressure and helps us to see grief for what it is and to recognize why we feel what we do. Talking is good for the entire family and for the patient.

It is important to acknowledge that this is a loss for everyone involved. This is not specifically about giving up the fight, but a reorganization of your options and the tools available to preserve the quality of life and the dignity of the person who is dying. It is a way to make good use of the time that is left and to focus on being good to yourself and to your loved ones.

If you are facing a terminal illness, be sure to set up a support system for the people around you. As you move closer to death it is these people who will help you to handle the pressure and the stress. It is also wise to set up a support system that cares for the people around you. Many will carry the burden of death silently so as not to burden the person who is ill with their grief. Knowing that now, enables you to build a team that cares for all of you.

Grief is a natural part of being ill and facing a terminal illness. It can be devastating and paralyzing, but by recognizing what it is and how it works empowers you to handle it.

Complete Article ↪HERE↩!

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There Are No Five Stages of Grief

When my father died, I wanted desperately to know the timing of this thing. But grief doesn’t have a timeline.

By Andy Kopsa

I got a text message from my father.

My first thought: impossible — that old man doesn’t know how to text.

My second thought: impossible — my father is dead.

My dad died on Sept. 4 — a Tuesday — just a month shy of his 82nd birthday. He was a farmer, just like my grandfather, and was the hardest working man I knew.

There are four of us kids; my brother and I just over a year apart, then a five-year gap and two sisters back to back. My father took a subtle approach to parenting. This resulted in my mother screaming on various occasions, “Leo, get those kids off the top of that barn/tree/tractor/wagon!”

He lived long enough to grudgingly retire, my brother taking over the farm where we were all raised, as was always understood. Dad couldn’t stay away from the farm, puttering around in the huge back garden; planting various squash (or as he pronounced it, “skwarsh”), potatoes and tomatoes; wrangling grandkids to till, plant or pull weeds.

I always figured dad would die on a tractor or performing some other farming-related task. I looked back down at my phone, afraid to read the message because for one moment so bright and terrifying I allowed myself to think: What if?

I opened it. It was from my nephew letting me know he took over my father’s telephone number; he couldn’t bear the thought of it going to someone else. I let myself cry fully then, relieved it wasn’t my father texting from beyond and shattered because he wasn’t.

As an investigative reporter, it is my job to get to the bottom of things, to make sense out of stacks of police reports, pages of legislation, histories and patterns to produce articles — a distillation of findings and interviews arranged in neat articles hopefully interesting and easy to understand.

I started researching grief. I wanted desperately to know the timing on this thing. When would I stop dropping to my knees (out of the blue) and crying so hard for so long that my ribs hurt?

My research turned up the five — or seven, depending on the source — stages of grief. It revealed ways of grieving and ceremonies that were supposed to ease this time in my life. I was to be reassured, according to one theory, that everyone dies, that life is death, therefore grief will come to us all.

There is nothing less profound than pointing out the inevitability of dying to tie us all together in suffering.

I found out my father was dying in late April. It was still a bit chilly as I walked around my Upper West Side neighborhood that day. My phone buzzed and it was my mother, calling with results from the decisive test, though I can’t remember which one. Blood work? CT scan? Or was its ultrasound?

I answered, and my mother asked: “Are you home?” No, I wasn’t home, and no, I wouldn’t wait until I get home to call her back.

I sat on a bike rack at a familiar location down the block. I can still feel heat climbing the back of my neck to the tips of my ears, the way my gut plunged. We didn’t have the official diagnosis yet, but I knew it was the worst news. My mother told me they found something on his pancreas.

Nearly 75 percent of patients with pancreatic cancer die in the first year. Dad died within five months.

I started grieving before my father died. I learned there is a name for this: anticipatory grief. The worst thing about anticipatory grief is that no one gets it unless they have been through it.

Friends tried to understand as I raged on the phone, bawling. I got startlingly angry with people I love very much, loudly telling one friend to stop trying to relate to what I was going through and just listen, for Chrissakes. Every time my phone buzzed, my heart seized: This was the call, I just knew it. I asked to be taken off mass text chains. My nerves couldn’t take many more reply-alls.

My requests — please take me off mass texts; please, no phone calls, I don’t want to talk because I don’t have it in me; please, no cards, just please — offended some people. That reaction confused me and enraged me.

I told all this to my friend, a woman also named Andy. It made sense, she told me, because this death of a parent thing is bad and people don’t know how to respond. She said I am finding my tribe — the ones of us who watched our parents dying. This friend who knows, she said: “I laid in bed when my mother was down to 68 pounds with breath smelling like death.”

When I told my good friend Kristy about my father, she said: “Girl, let me tell you, watching your dad die ain’t nothing pretty.” Kristy knows. She watched her father waste away, dying three years ago from Parkinson’s disease.

I need these women and these women specifically. I don’t have to say a word and they understand. It saves me because I don’t have the patience or strength to try and explain, I don’t even have the right language.

In July, an EF-3 tornado ripped through Marshalltown, Iowa. I grew up in Beaman, about 18 miles northeast. Now living in New York, I watched the video footage pouring in: the clock tower sucked off the top of the county courthouse, roofs peeled back, hunks of metal turned into missiles.

As I watched shaky cellphone videos, I started to cry. What would happen to the Orpheum theater, where my father took me and my brother to movies, or grandma’s house, where we would stop after church on Sundays?

The day after my father died, my husband and I made a trip to Marshalltown for groceries. We decided to take a drive around and survey the tornado damage. It was incredible. I threw myself into our disaster tour, enjoying the destruction of other people’s things, greedily searching out the worst-hit blocks, the most destroyed buildings — I needed it all.

We turned onto Main Street to head back home, and I was talking fast to my husband in the passenger seat. I got louder; I was yelling now, driving, crying. I abruptly pulled over to the side of the road, alongside the destroyed courthouse, and I screamed and I screamed and I screamed. And then I stopped. Heaving, I accepted the Kleenex my husband silently handed me, I blew my nose, and we drove in contented silence the 18 miles home.

My father’s last day on earth was a rough one. I am convinced he overheard us talking about possibly taking him into the hospice. We couldn’t keep up the relentless pace his care required, even though we knew he wanted to stay home. I hated the idea, but we had to consider it. My mother thought so, too.

Then, my father spiraled quickly. One sister feverishly moved her flight up from London — she would be home the next day, she told my father on the phone, his face lighting up listening to her voice. My other sister, from Minneapolis, was on her way but was trapped sheltering under an overpass as tornado warnings swirled around Interstate 35.

I started a journal after my father was diagnosed. I wrote: “I just want him to feel good with the time he has left, I want him to find peace and acceptance. All I want is for him to not be scared.”

And, he wasn’t. My brother called the priest, and he was there within the hour. As he walked in, I heard my father say clearly and happily, “Well, hi Father, I was wondering when I would see you!” My brother and I knelt by his bedside as the priest gave my father last rites: three last sacraments culminating in final Holy Communion.

I lay in bed with him off and on that day. Gave him watered-down coffee through a straw — he winked, told me my coffee was better than Mom’s. I lay there, my father still warm beside me, and I looked out the window at the big tree in the backyard and told him I would remember to fill the bird feeders.

My research suggests there will be a period of adjustment as I try to find a new normal. So far my new normal has involved a variety of public and private acts of mourning. Some days my pain is like accidentally brushing fingertips across a hot iron, burning yet mercifully brief.

Other days I start crying over a bag of frozen shrimp at Trader Joe’s. Or like today, I stare out the back door at my wintry rooftop garden and think of summer tomatoes, the smell of dirt, of my father, and sob.

My phone buzzed. Another text from “Dad.” This time it was a picture of a squirrel teetering on the lip of a rusted old watering can. I laughed this time. I haven’t switched the contact name to my nephew’s yet, and I don’t know when or if I will. People may be tempted to file this under the denial phase of my grief. But they would be wrong. I know my father is dead, I was there.

But I get it. As Americans, we have been trained up to believe that grief is a process, something linear we are capable of understanding. But I am comfortable with my broken heart now after my dad’s death, comfortable even when my sadness reaches a maddening crescendo because that is when I get the gift of giving up.

There is relief for me now — not from sadness and pain — but from my own expectations of how I am supposed to feel. There is no timeline. There isn’t even a straight line, for that matter. And for the first time in my life, I am O.K. with that.

Complete Article ↪HERE↩!

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What to Say (and What Not to Say) to Someone Who’s Grieving

By David Pogue

Do you laugh when someone’s grocery bag bursts? Do you find yourself stealing cabs? Have you shouted at puppies?

If you answered yes to any of these, then you may have Empathy Deficit Disorder.

For this Crowdwise, I asked you to recount some helpful things people said or did when you were in mourning — and to share some things that were decidedly unhelpful.

Your responses make it clear that Empathy Deficit Disorder (not a real condition, but maybe it should be) has reached epidemic proportions:

  • “After our daughter was stillborn,” wrote Wendy Thomas, “a colleague told me I shouldn’t have used the photocopy machine.”
  • “My first husband died of cancer when he was 35 and I was 26,” recounted Patrice Werner. “I still recoil when I think of the number of people who said, ‘You’re young; you’ll find someone else.’”
  • “My only child, Jesse, died by suicide at age 30,” Valerie P. Cohen recalled. “A friend wrote, ‘I know exactly how you feel, because my dog just died.’”

To be fair, knowing the right thing to say doesn’t come naturally. We’re neither born with that skill nor taught it. Our society generally avoids talking about death and grieving. Many of us haven’t had much experience with people in desperate emotional pain, so it’s not always obvious when we’re helping and when we’re hurting.

May the following pointers be your guide, brought to you by people who’ve been on the receiving end.
Rule 1: It’s not about you

Too many friends and acquaintances want to talk about how your loss affects them.

When Linda Sprinkle’s husband died, for example, she encountered many people who wanted to share their own grief stories. “They thought that it showed that they understood how I felt — but their grief is different from my grief,” she wrote. “I ended up dredging up emotional energy I didn’t have to comfort them.”

In her own mourning, Natalie Costanza-Chavez endured a parade of similarly self-focused remarks.

  • “Oh my God, I could never handle what you are going through!” (Costanza-Chavez’s mental reply, “Yes. Yes you could. You just do. And, you would. Don’t further isolate me with your own projecting.”)
  • “I didn’t call because I figured you wanted to be alone.” (Her: “Even if I did, you should always call, write, email, or text.”)
  • “I didn’t visit because I hate hospitals. I don’t do hospitals.” (Her: “No one likes hospitals, no one, unless perhaps you are visiting a new baby. Do it anyway.”)
  • “I’m so sorry for your loss to lung cancer. Did he smoke?” Or, if it was a heart attack, “Was she overweight?” (Her: “You are just trying to find reassurance that this scary, scary thing won’t happen to you. Stop it.”)

Ann Weber, a social psychologist who specializes in loss and grief, has identified another well-meaning but frustrating platitude, “Let me know if you need anything.”

“That suggestion seems like an innocuous promise,” Weber wrote, “but it’s often an exit line, just a way of escaping after the service or condolence call. And it puts the onus on the bereft person to be the one to ask for help.”

Rule 2: There is no bright side

You’ll hear many remarks that are intended to soothe you or lighten your mood. In principle, it’s a kind gesture. In reality, it’s never welcome.

When you’ve lost someone you love, you’re in a dark, raw place. Nothing anyone can say is going to cheer you up, especially observations that begin with the words, “At least.”

“At least she isn’t suffering,” was a particularly unhelpful line submitted by Beth Braker, who had to hear it. “At least you have other children,” recalled Margaret Gannon. “At least she didn’t die of AIDS,” remembered Jill Falzoi. “At least now you can have your own life,” Mary Otterson heard. (“I always had my own life,” she added. “Now I just have it without her in it.”)

And, from Emma St. Germain’s financial adviser, “At least you can move to another state now, with a more favorable tax environment.”

Crystal Hartley summed it up like this: “If you’re going to start off with ‘At least,’ just stop. It’s not going to be helpful. You’re trying to force them to look at the positive when they’re feeling terrible. Just acknowledge that the situation is bad enough exactly as it is, and validate their feelings.”

Humor, on the other hand, is tricky enough under the best of circumstances; when someone is in emotional agony, it can be excruciating. Don’t be the cousin who approached Frances Rozyskie at her father’s funeral to blurt out, “So! You’re an orphan now!”

Rule 3: Be careful with religion

Offering your beliefs about God and heaven to a nonreligious person can land with a thud, too. If the recipient doesn’t share your beliefs, you’re likely to add offense to the insensitivity.

When she learned that she had lost identical twins to a miscarriage, Donna Hires was devastated. “I ran into a friend who said words I will never forget, ‘Oh, I heard it was twins. I guess God didn’t think you could handle two at once.’ It took me years to forgive her.”

“In support groups for parents, ‘God never gives you more than you can handle’ is universally known as one of the cruelest comments for devastated parents to receive,” added Wendy Prentiss, whose 6-year-old nephew was diagnosed with a deadly cancer. “It suggests that the parents are weak for being crushed. It comes across as judgmental and tone deaf.”
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It also suggests, wrote Kathryn Janus, “that God had a hand in the death, and that’s just awful. And, P.S., sometimes the death is more than the bereaved can handle.”

Unless you’re certain that the bereaved shares your faith, then it’s best to avoid these remarks, passed along by readers like Nancy Field, Kathryn Janus and Kirsten Lynch: “She’s in a better place now,” “It was God’s plan,” “God wanted him up in heaven” or “You’ll see her again someday.”

Rule 4: Let them feel

One final bit of advice, “Don’t tell a grieving person how to feel. They may need to be vulnerable. They may need to cry for days on end,” wrote Kathryn Janus. In other words, don’t say things like, “Stay strong” or “Be strong.”

Indeed, the most helpful thing anyone said to Teresa Brewer in her time of loss was, “Whatever you are feeling, and whenever you are feeling it, it’s O.K.”

“I can’t tell you how liberating that was for me as I grieved,” she wrote. “There were times when many would think that I or my family should be somber, but we were howling with laughter. So it helps to be given permission for the feelings you have.”

What you can do, and should say instead

That list of what not to say includes many people’s go-to lines. So what should you say?

“If you knew the person, tell the mourner a story about that person — ideally in written format, because the family passes these around. There is no greater gift than a story about the loved one at the very moment it seems there will never be new stories,” Leslie Berlin wrote.

And if you didn’t know the person who died? Ms. Berlin suggests: “I didn’t know your [mom/dad/friend/sibling/child], but based on who you are, s/he must have been [nice adjective here].”

If you have only a moment to interact with the bereaved, like in passing or at a funeral, here are some of your best suggestions:

  • “I know how much you loved her.” — Beth Braker
  • “I wish I had the right words for you.” — Kathryn Janus
  • “I can’t imagine what you are going through, but I am here to listen if you need me.” — Wendy Loney

For Karen Hill, “‘I’m so sorry’ is still the simplest and best.”

Finally, if you really care, do something practical to help. Launch into action.

“There’s a huge range of support. A hug in that moment, bringing food, listening when the person needs to talk, checking in, reaching out during the holidays,” wrote Patrice Werner. “Just do something. You will feel worse in the long run if you do nothing.”

The key, advised Margaret Gannon, is, “Don’t offer, just do it. Show up with lunch (or dinner). Drop in and do my laundry. Take the kids out for a few hours. And most importantly, talk about the person who died. I don’t want him to be forgotten.”

Christy Goldfinch summed it all up in her recollections of her husband’s death two years ago at 57. “The main things I remember were lots of hugs, and ‘I am so sorry,’ and personal anecdotes about Frank’s intellect, his wit, his compassion, his skill,” she wrote.

“Oh, and one other very helpful thing, folks bringing barbecue and beer to the memorial. This was Texas, after all.”

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A matter of life and death

Dr. Steve Hadland learned over time to appreciate the “majesty and mystery” of death.

By Ellen Shehadeh

Dr. Steve Hadland began his medical career as an emergency room physician, fixing people and saving lives at all costs. These days he treasures his work as a hospice physician associated with Hospice of Petaluma, tending to the terminally ill and allowing them to die in comfort. Two extremes, one might say, but understandable given the intervening events in his life.

Steve’s practice melds a deep belief in social justice, reverence for life in all forms and enduring, self-described conservative views about end-of-life practices. His youthful face and genial manner, combined with an easy laugh and a soothing voice, belie the depth of his thinking, intellect and perceptions. He is informed not only by medical writings but also by psychology, literature, philosophy and classical music. One feels both calm and welcome in his presence.

Steve was the youngest in a conservative family growing up in Chicago. He attended university in Iowa City, studying astrophysics as a stepping stone to an astronaut program, and later majored in neuroscience. “University was a political and social awakening, as well as an intellectual one,” he says. He participated in marches and protests against the Vietnam War and for civil rights.

He longed to break out even further from his roots, however, and what better place than California, where “legend loomed for surfing and blondes.” He never quite managed the surfing thing, but wasted no time marrying his first wife, a blonde, during the summer of love, which coincided with his first year at Stanford Medical School. Their marriage of seven years included major involvements in the civil rights, anti-war and human potential movements.

All along, he had thoughts and profound feelings about end-of-life experiences, in part influenced by a Tolstoy novella, “The Death of Ivan Ilyich,” which he read in a death and dying course at Stanford. “It inspired me then, and continues to inspire me, year after year,” he says of the book, which he recommends “to anyone who really wants to know about what it’s like to die.”

Steve’s first job out of medical school, in 1972, was in a Kaiser emergency room. The nurses recognized his empathic nature and would steer the most difficult patients his way. Yet he recoiled at the Herculean efforts by staff to revive a dying patient, “all the excitement, the IVs,” and how quickly and “disrespectfully” staff abandoned a corpse when resuscitation efforts failed. At the time, there was no such thing as “do not resuscitate” or hospice.

Steve sought a different kind of medical experience and, in the fall of 1974, he arranged an interview with Dr. Michael Whitt in Point Reyes Station. He remembered the area from a drive many years before; “It cast a spell on me,” he says. Dr. Whitt’s liberal medical practice included home births, which at the time were popular in alternative communities, but Steve was stunned that he would deliver babies without liability insurance.

Steve’s conservative orientation and lack of maturity led him to decline a job offer by Dr. Whitt but, many years later, he would run a small integrative medical practice and pain management clinic out of his Point Reyes Station home. Ironically, he never secured liability insurance. “The influence of West Marin,” he quips.

Newly divorced in 1978, Steve encountered a single mother of three from Holland who was working as a Kaiser receptionist to pay her way through nursing school. They married two years later and, after 38 years, “it looks like it’s going the distance,” he says, laughing. Anneke van der Veen became an emergency room nurse, but they never worked together professionally, realizing the potential pitfalls of mixing business with pleasure.

Steve had traveled to England in 1978 to visit the first modern hospice. Although he was impressed with the approach, “I could tell I wasn’t ready for it,” he says. It was 12 years later that he helped start a hospice in Santa Clara, which he ran for five years along with an oncologist friend. He explains: “The world said, ‘You seem to be ready.’”

As society’s views about death and dying dramatically changed over the years, so clearly have Steve’s. Fifty years ago, death was a taboo subject and doctors rarely broached it with their terminal patients or even gave them an honest diagnosis. Now people take advantage of many choices, like refusing to eat and drink or using lethal medications now sanctioned by law. In California, the End of Life Option Act allows a patient to self-administer a lethal cocktail, but only after being judged by two physicians to be of sound mind and six months from death.

Some people object to the strictness of this law, which does not allow someone to assist in a patient’s suicide if the patient is physically or mentally unable to self-administer, even if it had been the patient’s expressed wish. In some states such assistance could be considered euthanasia or even murder.

Steve agrees with this self-described conservative view. “I don’t think it’s a bad thing; we don’t know what’s going on [inside their head]” or what kind of life these patients, some with Alzheimer’s and dementia, might have that we cannot fathom, he says. Surprisingly for a hospice worker, he was still opposed to the law when it was passed in July 2017, because “it’s a slippery slope.” How slippery? He cites a law in the Netherlands that now allows not only terminally ill patients but also depressed people to legally receive the fatal cocktail.

Steve explained that under California law, doctors may not legally list the cause of death as suicide when a patient has taken his or her own life. But the law “does allow a reference to the use of aid-in-dying meds as a contributing factor in the death, including the underlying fatal illness.” Steve, as a personal practice, does not include aid-in-dying medicines on the death certificate “to protect the patient from any backlash involving the choice of an induced death.”

Today Steve appreciates what he calls the “majesty and mystery” of death. Along with survivors, he participates in ancient rituals—“beautiful ceremonies” like washing and dressing the body—and finds it deeply humbling.

Steve is a spiritual man. He is influenced by the teachings of Jean Klein, a European who had an awakening in India. Although it is difficult to summarize Klein’s ideas, one important teaching is, “I am not identical with my thought process.” Steve believes that most of what one knows can be understood through other means, “coming from the heart and a sense of pure being.” This understanding has given him confidence to communicate with a dying person without words. “There is something in me that I know will make a difference. I am not anxious or worried, and am not in my head,” he explains.

About society’s recent openness to discussing death and dying, Steve cannot be more positive. It used to be, “If I don’t talk about it, it won’t happen.” The effect of the hospice movement has been to “lift the lid about frank, open discussions about death and dying. It helps people plan and frees them from living in a false reality, or a web of lies,” he says.

Naturally, one so intimate with death has opinions and thoughts about what awaits us all in the end. And what is the best death, to go quickly or to linger for a while? Not surprisingly, Steve believes that for himself, the ideal death would be when you know it is coming. “You get to finish your life, and say your goodbyes,” he says.

Steve also believes in a “continuity of consciousness.” This idea came to him intuitively years ago, after the death of his beloved dog, Misha, whose picture is prominently displayed on his office wall among other family photos. He tells this story, choking back tears.

“As I stood over the grave, I called out loud, ‘Where have you gone?’

A small voice inside asked, ‘Did you love me?’

‘Yes.’ ‘Do you still love me?’

‘Yes.’

‘Then that’s where I am.’”

Steve says, “My co-workers, patients and families living with the experience of dying have taught me much of what I know about love. Not the romantic love, of course, but something more encompassing, a feeling of compassion and connection with others that grows into this deep feeling of commonality and love.”

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Changing the National Conversation around Death

School of Public Health symposium explores how we approach dying so we can live richer lives

SPH symposium panelist George Annas, a William Fairfield Warren Distinguished Professor, suggested that that people should consider prioritizing quality of life over quantity of years lived.

By Jillian McKoy

From anti-aging beauty regimens to strict diets and medical screenings, Western culture places immense value on the quality and preservation of life. Death, however, is a subject largely absent from daily conversation, and when raised, it evokes fear and anxiety.

But talking about death—and the policies and attitudes that shape it—is a healthy practice, speakers at the School of Public Health Dean’s Symposium Death and Dying: A Population Health Perspective concluded Tuesday. More than 150 people attended the daylong event, which gathered authors, scholars, professors, physicians, storytellers, and public health experts for a frank conversation about an inevitable part of being human.

“The data is clear that 100 percent of us will die,” Sandro Galea, Robert A. Knox Professor and dean of the SPH, said at the start of the program, to the amusement of the audience. “And that’s okay,” he continued. “Our goal should be to think about how we approach death and dying at the population level, so we can live the healthiest, fullest, richest lives we can until such time.”

The notion of a good death—what it constitutes and if it even exists—was a central component of the day’s conversation.

“Death and dying is an issue that is characterized by a great disconnect between the universal experience we all share witnessing the deaths of our loved ones and a reluctance to discuss honestly and publicly the policies and attitudes that have gotten in the way of ensuring the good deaths that we all no doubt seek,” said Jon Sawyer, executive director of the Pulitzer Center, which cohosted the symposium, along with BU’s College of Communication, College of Arts & Sciences Center for the Humanities, and Program for Global Health Storytelling.

Sallie Tisdale, a nurse at Providence ElderPlace, pushed back against the concept of a good death. She said the National Academy of Sciences, Engineering, and Medicine definition of a good death—one that is “free from avoidable pain and suffering and in general accord with patients’ and families’ wishes”—is a fantasy.

“Death is a solitary experience,” Tisdale said. “How can we as a group decide what avoidable distress and suffering is? Only the person in the deathbed knows what that means.” Instead, there is such a thing as a “mastered death,” she said, where people are able to “express themselves as long as possible.”

Many of the speakers’ analyses were informed by personal experience. Michael Hebb, author and founder of the Death Over Dinner movement, described how his initiative was born from a communication breakdown within his family after the death of his father. Hebb was 13, and his family members, unable to talk about the devastating loss, ate meals alone and mourned in silence.

But repression creates the perfect environment for disease, he said, while talking about death “makes you funnier, improves intimate relationships, and increases your capacity to love.”

Death and Dying: A Population Health Perspective panelists Barbara Moran (COM’96), WBUR senior producing editor (from left); George Annas, a BU William Fairfield Warren Distinguished Professor; Tracy A. Balboni, Harvard Medical School; author and physician Samuel Harrington; journalist Christopher de Bellaigue; and Amy Appleford, a CAS associate professor of English.

Jamila Michener, a Cornell University assistant professor of government, recounted how her mother’s battle with stage 3 pancreatic cancer was initially misdiagnosed as acid reflux years prior by doctors in her low-income Queens neighborhood. The cancer wasn’t discovered until she saw a doctor in a predominantly white neighborhood in Ithaca. (Michener’s mother survived the cancer and is still living.)

“My brother jokes that she lived because she fled where black people were,” Michener said. “The experience of dying wasn’t something she wanted to do in her own neighborhood.”

Other speakers explored ways that people can exercise some control over their own dying.

“Spirituality is a primary strategy for integrating death into the human identity,” said Tracy Balboni, a Harvard Medical School associate professor of radiation oncology. Citing oncology studies conducted at four academic centers in Boston, Balboni explained that 78 percent of participating cancer patients said that religion was an important factor in dealing with their illness and that it provided coping skills and a way to understand their illness and their life.

“We need a creative reintegration of spirituality into medicine in order to care for dying patients well,” she said.

Another speaker, journalist Christopher de Bellaigue, discussed the practice of physician-assisted death in the Netherlands, dubbed the “euthanasia capital of the world.” The practice is now widely supported therecafter it was legalized in 2002 for patients experiencing “unbearable suffering with no prospect of improvement.”

De Ballaigue noted that the majority of the Dutch population opposed euthanasia when it was first enacted into law: “What interests me is where legislation leads to a change in dynamic in character and narrative, or the other way around. Public attitudes follow legislation.”

George Annas, a William Fairfield Warren Distinguished Professor and an SPH professor of health law, ethics, and human rights, challenged the American cultural approach that humans have to do everything they can to live as long as possible.

“Avoiding death is the goal of modern medicine,” said Annas, director of the Center for Health Law, Ethics & Human Rights, arguing that people should instead consider prioritizing quality of life over quantity of years lived. He suggested that it would be valuable to shift a portion of research funding into “things that make life worth living, such as decent housing and public transportation.

“There is such a thing as dying healthy, and it can be a worthy public health goal,” Annas noted.

Author Barbara Ehrenreich (Nickel and Dimed: On (Not) Getting By in America and Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer) was scheduled to be a panelist, but was unable to attend. Sharon Begley, senior science writer at the Boston Globe publication STAT, a morning session moderator, read a portion of Ehrenreich’s prepared statement to the audience: “I’m 77 years old and I love cheeseburgers and Popeye’s Fried Chicken. I exercise when I feel like it, and I refuse to submit to medical tests and screenings recommended to all people over 50.”

This approach to her health, she explained, makes her an “outlier in our culture…where death is seen as some kind of failure.”

Panelists also discussed dealing with grief after a loved one dies, and the lack of resources available to properly treat mourning family members and friends. Katherine Keyes, a Columbia University Mailman School of Public Health associate professor of epidemiology and codirector of its Psychiatric Epidemiology Training Program, detailed how unexpected loss can lead to symptoms such as depression and to post-traumatic stress disorder.

“There’s something very specific to the loss experience itself,” said Keyes, who lost her ex-husband to suicide. “Losing someone close to us is very destabilizing.”

Afternoon session moderator Diane Gray, Acclivity Health Solutions chief innovation and advocacy officer and a board member of the Elisabeth Kübler-Ross Foundation, urged the audience to “become more engaged in the community of healing, empathetic, compassionate, caring individuals.

“There is no reason in our country for us to continue the legacy of shame and stigma that surrounds grief,” Gray said.

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