Category: Death Education

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Listening To Older Patients Who Want To Stop Dialysis

By Judith Graham

Dr. Susan Wong sat down with an 84-year-old patient in the hospital, where he’d been admitted with a flare-up of a serious autoimmune condition and deteriorating kidney function.

The older man told her he wanted to go home; he’d had a good life and was ready for its end. He didn’t want aggressive care — including dialysis — having witnessed his wife and son die painfully in intensive care years ago.

Wong, an assistant professor of nephrology at the University of Washington, was prepared to follow the man’s wishes, but other physicians, eager to pursue tests and treatments, disagreed. For a week, the doctors argued about what to do. Finally, they discharged the patient, who died in hospice care a few weeks later.

Older adults with advanced kidney disease who want to forgo dialysis often encounter similar resistance from physicians, according to a new study in JAMA Internal Medicine by Wong and colleagues at the Veterans Affairs Puget Sound Health Care System in Seattle, where she’s an investigator.

The researchers documented doctors’ reactions by reviewing medical charts of 851 older patients with chronic kidney disease who refused dialysis at the VA health system from 2000 to 2011. In their notes, physicians frequently speculated the patients were incompetent, depressed, suicidal or irrational.

With dialysis, people are hooked up to a machine that removes waste from their blood, usually three times a week for four hours at a stretch. Many older adults find the treatments burdensome, and medical complications are common.

Yet patients who expressed reservations about this treatment were sometimes labeled as difficult or unprepared to confront the reality of their medical condition. “Still in denial about his kidney disease and his need for hemodialysis in the near future — repeat discussions with patient and wife regarding compliance,” one nephrologist wrote. Even when patients were firm about declining dialysis, doctors repeatedly questioned their decisions.

“Clinical practice guidelines for advanced kidney disease are geared toward survival, not what would give patients the best quality of life or the greatest functional capacity,” Wong said. Another factor at play: Nephrologists aren’t trained to ask seriously ill patients what’s most important to them and shape treatment recommendations accordingly. Although most patients want to have such conversations with a kidney specialist, few do so, studies have found.

“We don’t really know how to help patients with serious illness make decisions that are right for them or what to do when they don’t really want dialysis,” said Dr. Jane Schell, an assistant professor of palliative care and nephrology at the University of Pittsburgh.

Conversations about the potential benefits and burdens of dialysis, as well as alternatives, are especially important for frail patients 75 and older who have two or more chronic conditions, such as diabetes and high blood pressure, and difficulty with daily activities such as bathing or walking — a group at risk of experiencing significant complications from dialysis but not achieving longer life.

Healthier older adults have better outcomes on dialysis — a valuable treatment for many people. “We shouldn’t limit access to dialysis based on age, but we should have meaningful conversations about goals of care and make it clear that dialysis is a choice and that patients have alternatives,” said Dr. Bjorg Thorsteinsdottir, an assistant professor of internal medicine and bioethics at the Mayo Clinic.

Options that should be discussed include comprehensive conservative care, which calls for preserving as much kidney function as possible, managing a patient’s health problems, dealing with symptoms such as nausea, swelling, itchiness, pain and breathing difficulties, and preparing for end-of-life care; peritoneal dialysis or hemodialysis at home; and palliative dialysis, a less intensive version of this treatment that keeps people alive for longer but isn’t meant to restore kidney function.

Comprehensive conservative care programs are few and far between (in New York City, Pittsburgh, Seattle, San Francisco and a few other locations), but efforts are underway to change that. With funding from the American Society of Nephrology, Schell and colleagues at the University of Pittsburgh have developed an online conservative care curriculum set to debut in March. Nineteen nephrology training programs for physicians are set to participate.

Also, the Pathways Project, funded by the Gordon and Betty Moore Foundation, is working to make palliative care (also known as supportive care) for patients with advanced kidney disease widely available. (KHN’s coverage of end-of-life and serious illness issues is also supported in part by the Gordon and Betty Moore Foundation.) Dr. Alvin Moss, co-investigator of the project and professor of medicine at West Virginia University School of Medicine, said the project hopes to sign up 10-15 dialysis centers this year.

Sometimes, patients choose a time-limited trial of dialysis with the understanding that they can change their minds down the road.

Cyndy Patton’s 86-year-old mother, Isabel, learned last spring she had advanced kidney disease after going to a Pittsburgh hospital, sickened by repeated bouts of vomiting. Physicians suggested she try dialysis for a few weeks and see if her kidneys might rejuvenate. (The older woman had survived open-heart surgery and a stroke and was living on her own after her husband’s death.)

After a week in the hospital and another week in a rehabilitation center, there was no change: Patton’s mother still needed dialysis. Five weeks later, she confessed to her daughter that the treatment was making her miserable. But giving it up felt like committing suicide, she told Patton — an unacceptable option.

A week later, Isabel had changed her mind. “This is not a life I care to lead, being hooked up to these machines,” she told Patton. “What am I doing this for?” The older woman had consulted with Schell at the University of Pittsburgh about palliative care and hospice care, and she chose hospice.

Dialysis ended and the family gathered at Isabel’s bedside. “She was all ready to die — but she didn’t, and is still living to this day,” Patton said.

It’s an example of how hard it can be to predict what will happen to any given patient with advanced kidney disease. What’s important for the patient to understand is that “it’s not always all or nothing — dialysis or death,” Thorsteinsdottir said.

“Patients have to be very assertive and tell their medical team: This is what I want and what I don’t want,” Moss said. For more information, he suggested people explore the websites of the Coalition for Supportive Care of Kidney Patients (he chairs that organization), the National Kidney Foundation and the American Association of Kidney Patients, and “really spend some time learning about your options.”

Complete Article ↪HERE↩!

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End-of-life doulas bring guidance and strength at a time of need

End of life doula Susan Capurso

By Erika Prafder

After her 52-year-old husband died of the flu in 2014, Susan Capurso from Long Island, New York was left feeling helpless, angry and unsupported.

“We weren’t prepared at all,” says Capurso, who had been married for 25 years. “We didn’t have hospice, as my husband’s illness was not a long-term one. At the end, there was no one standing next to me saying ‘this is what is happening now. He’s going to pass within hours and this is what to expect.’ I’m detail-oriented, I wanted to know.”

Interested in offering non-medical, holistic and emotional support to the dying and their families, Capurso began to research the work of an end-of-life doula. Traditionally, a doula is a layperson who aids a woman in childbirth and newborn aftercare alongside medical staff. In the same way, end-of-life doulas are supportive to hospice; they do not take the place of it.

To further her interest in this growing field, Capurso began volunteering for a hospice and enrolled in the certificate-bearing Doulagivers training school of New York City (DoulaGivers.com), a school started by Suzanne O’Brien, formerly a hospice and oncology nurse.

O’Brien was inspired when, on a trip to Zimbabwe in 2012, she saw how local people were trained to sit with a person who was dying and “guide” them through their journey. While the country lacks basic needs and medicinal care, “they did have neighbors sitting with a family member who is dying — holding that space for them,” says O’Brien. “The power of presence might be the most powerful medicine we have, but we’ve lost that in our health care system. We’re all in this together. We should support each other however we can.”

On O’Brien’s course, “training is individualized,” says Capurso. “Weekends are spent with [O’Brien] and everything else is done online through a series of live webinars and modules.”

The three-pronged curriculum covers end of life phases from diagnosis to stabilization, transition and disease process. Elder care assistance and advanced directive (when a patient determines their end of life wishes while they are still able to do so) is also covered.

“This covers the important papers you really need to button up, such as health care proxy, living will, do not resuscitate,” says Capurso.

Practical help is also part of a doula’s workload.

“We come into homes, prepping meals for the week, doing laundry and going through each room to ensure it’s safe,” says Capurso.

Beyond these basics, Capurso extends her healing work to include the creation of a legacy book with patients.

“It’s something we work on together. We go through your life, adding personal stories, photographs and memories,” says Capurso. “It’s not just something you’re leaving for family and friends, it really is therapeutic — bringing light, love and closure.”

Helping patients to compose letters to loved ones and assisting families with writing memorials and eulogies are also customary tasks.

Having your “funeral” before you die is another trend that doulas can help with.

“Why not have a memorial before you go?” says Capurso. “Let’s laugh, say our goodbyes and be happy. It doesn’t have to be scary. A celebration with the dying person there shapes the person’s life and offers closure.”

Carrying out a dying person’s wishes is also a top priority for Capurso.

“I can help find a way for the last days to meet a dying person’s desires. Maybe starting to contact family members to come in for a final visit, asking them to write a memory down on a card and placing it in to a basket, incorporating nice music, candles or aromatherapy,” says Capurso.

This line of work is especially well-suited for hospice volunteers who want to do deeper work, as well as healers, reiki practitioners, massage therapists and acupuncturists. It’s also beneficial to have a genuine interest in educating the community on the resources available for them.

“You don’t go looking for this career, it calls out to you,” she says.

The demand for such caregivers is overwhelming. By 2020, an estimated 117 million Americans will need some caregiver assistance.

“Doulas fit in to the personal companion model, which is a billion-dollar industry serving our elder population,” says Deanna Cochran, RN. Cochran is the founder and CEO of Quality of Life Care, LLC, in San Marcos, Texas, an end-of-life training and certification agency. She’s also the first chair of the End of Life Doula Council within the National Hospice and Palliative Care Organization.

“The dying have specific needs and fears that need addressing,” she says. “As we evolve, the field is ripe for training people to be skillful at this — it’s a movement that’s growing. There’s plenty of room for every single hospice in this country to have at least one part-time doula. Within the next 10 to 15 years, opportunities will also become prevalent at nursing homes and assisted living centers.”

Fortunately, training is more prevalent now.

“There are over 10 certification programs, ranging in price from $700 to $2,500,” says Cochran, who offers a fast-track, 16-week program. “You can learn the skills, but you need to do the work by volunteering through hospice, nursing homes, hospitals. There’s an art to it.”

Complete Article ↪HERE↩!

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How I Made Friends With Reality

With her signature wit and wisdom, Emily Levine meets her ultimate challenge as a comedian/philosopher: she makes dying funny. In this personal talk, she takes us on her journey to make friends with reality — and peace with death. Life is an enormous gift, Levine says: “You enrich it as best you can, and then you give it back.”


 

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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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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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