Tagged Death and Dying

Crossing Paths: A Baby and His Grandfather

Photo

Credit Josephine Sittenfeld and Thad Russell

In a photo essay, Thad Russell and Josephine Sittenfeld chronicle the end of life of a beloved father and the beginning of life of their new baby.

Nov. 20 – Thad

I’ve left my very pregnant wife, Jo, and our little daughter, Polly, to drive up to northern Vermont to retrieve my 86-year-old father and bring him back to Providence.

But when I get there, Dad is hunched over in his chair in the living room. He looks thin and tired, unshaven, confused, cold, short of breath.

In a weak voice he says that his lungs aren’t working and he can’t get enough air. With his arm hanging limply over my shoulder I move him toward his bedroom. I take off his shoes and glasses, turn off his light, and kiss him goodnight. I go to bed shaken to the core.

Dad grew up on a farm, played football in high school, went to M.I.T. to study engineering and architecture, and had a long career designing and building houses.

He became an expert skier back in the 1950s when downhill skiing was rebellious and dangerous.

And now, maybe for the first time ever, he doesn’t want to get out of bed.

I call my friend Bill, an emergency room doctor. He tells me quietly and firmly, “Call 911 and get him to a hospital ASAP. Don’t think about it. Just do it.”

This is the last time my father will ever see his land or be in his own house or sleep in his own bed. In fact, it is the last time he will sleep in any bed that isn’t in a hospital or nursing home. It’s the last time he will live without the assistance of a walker or a wheelchair, a professional caregiver or an adult diaper.

At the hospital, Dad’s cardiologist puts it bluntly. “Your father needs a new heart, and he’s not going to get one. I’ve used up my bag of tricks. Have you thought about hospice?”

Photo

Credit Josephine Sittenfeld and Thad Russell

Jo

That tiny, rapidly fluttering shape amid the gray static — even though I’ve been through ultrasounds before with my first child, the evidence of the life inside me is still awe-inspiring. I feel excited and tearful.

Nov. 28 – Thad

Dad’s vital signs are bad. He has trouble breathing and now needs oxygen full-time. It’s Thanksgiving morning, and Dad is taken by ambulance from the nursing home to the Miriam Hospital. I meet him in the emergency room, abandoning Jo to cook her first turkey and prepare for a house full of in-laws. The emergency room staff does a battery of tests and confirms what we already know: Dad is suffering from late-stage heart failure.

But after a few hours, he’s released, and I bring him home for Thanksgiving dinner.

Dec. 25 – Thad

Amazingly, Dad is able to be at our house on Christmas Day. He doesn’t believe in Santa Claus, or even Jesus for that matter. But he does like a good turkey dinner.

Photo

Credit Josephine Sittenfeld and Thad Russell

Jan. 9 – Jo

I wake up at exactly midnight with contractions. Around 6 a.m. the contractions get closer together. Polly wakes up and thinks it’s funny that I’m mooing like a cow. Thad and I take Polly to a neighbor’s house and head to the hospital.

I have another killer contraction in the lobby. I’m on all fours on the floor, moaning. People are staring.

Once we finally get to the room, I get into the tub. It feels good to be in the water, but the contractions are painful and intense — after the tub I’m on a ball, then on the bed, then standing, then on the toilet, then back on the bed.

Thad is on the phone in the next room trying to coordinate a urology appointment for his dad when all of a sudden things intensify. The baby’s head starts crowning, and it burns like hell. The nurse runs out to get Thad. And with a few more pushes our baby is out.

When they hand him to me, he’s big and grayish, but pretty quickly turns pink.

It’s intense and beautiful and crazy and amazing.

Baby Curtis lies on my chest, still connected through the umbilical cord, and Thad and I just take him in.

Photo

Credit Josephine Sittenfeld and Thad Russell

Jan. 13 – Thad

Dad is excited to meet his first grandson  —  and a little confused. He keeps calling him Matt, and asks when we have to give him back.

Photo

Credit Josephine Sittenfeld and Thad Russell

Jan. 24 – Thad

A nurse calls to tell me that Dad has fallen. I meet him in the E.R., again. He looks pretty beat up and has a big gash on the top of his head.

The test results worry the doctors.

And yet he survives  —  for days, then weeks, then months.

I visit Dad as often as I can and for as long as I can. I pick him up and we go on little field trips: to doctors’ appointments, to get new eyeglasses, to get his hearing aids cleaned, or to our house for dinner.

Photo

Credit Josephine Sittenfeld and Thad Russell

Occasionally, I find Dad asleep in his room, his face lit by the light of CNN Headline News. Some nights I stay with him for quite a while, rubbing his feet, watching him breathe and wondering what he is dreaming about.

I feel conflicted  —  it’s not that I want Dad to die, but I sometimes wonder if this is the way he ever wanted to live.

Dad can’t walk, get dressed or complete most basic daily routines without assistance, but his spirits are good.

In July, Dad has a bad fall, spends another week in the hospital. I call my siblings and tell them it’s time. We’re going to start hospice.

Photo

Credit Josephine Sittenfeld and Thad Russell

Aug. 8 – Jo and Thad

Dear Family & Friends –

We are sad to report that Sam died Friday evening. He was 87 years old.

For the past year, Dad continually impressed us with his dignity, toughness and overriding will to live. He  —  and we  —  were rewarded with some distinctly good days that we will never forget.

But last week, he and his heart decided it was time. He retired early one evening, declaring that his bed felt “wonderful,” and started his long sleep.

In the end, he passed quietly and gracefully, surrounded by his family (including his bouncy and bubbly baby grandson Curtis, who played happily at the foot of his bed), and a wonderfully compassionate team of rotating attendants and nurses.

Ever the solar animal, he waited until just after sunset to pass.

With love and thanks,

Thad & Jo

Photo

Credit Josephine Sittenfeld and Thad Russell


Thad Russell and Josephine Sittenfeld are photographers who live in Providence, R.I., and teach at the Rhode Island School of Design. More of their work can be found at thadrussell.com and josittenfeld.com.

Parenting Our Children After We Die

Photo

Credit

Accounts of the grief children suffer after the deaths of their mothers or fathers reinforced my desire to use the time granted by treatment to help my adult children cope with my demise. We always parent our offspring to survive us, but cancer intensifies the urgency to do so.

I am not a fan of “anticipatory grieving,” the term psychologists use to describe how some people with chronic disease mourn their expected death with their partners and kids. While I am alive, I do not want to subject my daughters to a long sojourn in the stony valley of the shadow. The idea of converting our present into a prelude of my absence distresses me.

Nor am I thinking of the medical and legal forms — advance directives, living wills, medical powers of attorney — that too many of us leave to the last minute, for those papers are in my husband’s keeping. I am also not considering the words dying people are advised to speak to their beloveds. On my deathbed, I hope I will express my gratitude and love. Given the drugs I will probably need for pain management, however, I cannot count on being coherent then.

Following the lead of other patients with cancer, I have composed two different documents to buffer my girls from the misery that ensues when a parent dies: letters my daughters will receive before and probably after my demise. Though I may never find out if these words ease their loneliness, I like to think they will. And they have certainly afforded me a respite from anxiety.

Photo

A page from “When David Lost His Voice.” <a href="https://static01.nyt.com/images/2016/06/30/health/well_gubar1/well_gubar1-articleLarge.jpg">See a larger version.</a>

A page from “When David Lost His Voice.” See a larger version.Credit

The first is called “What’s Where.” In it, I provide the locations of my lawyer, financial adviser, bank account, will, computer passwords, the girls’ juvenilia, and my personal effects. This one-page sheet of paper concludes with the name of the funeral home that will oversee the cremation of my remains and the site of the cemetery plot for the ashes. If nothing else, I hope that the existence of such a document demonstrates to my kids that I have reconciled myself to my fate.

The second, “Letters to My Daughters,” I began a year after diagnosis and extend periodically. Here, I relate specific memories I have of my two daughters and two step-daughters and more recently of their families. Each time I write a new section, I date it. It has the look of a journal, but consists of a succession of missives, some addressed to all of them, others to one of them.

In this computer file, I recount jokes, recall musical or sports performances during their school years, thank them for material and nonmaterial gifts, characterize their temperaments at birth or what I made of them when I first met them, embarrass them with stories about gaffes they and I have committed, regale them with cooking adventures and vacation misadventures, remind them of celebrations we relished together. Periodically thickening “Letters to My Daughters” inspires me to treasure our shared past. At some point I will print it out and put it in addressed envelopes.

Recently I encountered a short story and a graphic novel that crystalized my obligations and clarified what a terminal patient with younger children can do to help them.

In “Pretending the Bed Is a Raft,” a story by Nanci Kincaid that was made into the movie “My Life Without Me,” 23-year-old Belinda realizes that she will soon die from a gynecological cancer. In a list of things to do before death, she jots down: “tape-record birthday messages for my kids up until they turn 21. Tell them I love you every day.” For her 6-, 4-, and almost 2-year-old, she spends weeks recording instructions and assurances “until she had them all legally grown.”

Photo

A page from “When David Lost His Voice.” <a href="https://static01.nyt.com/images/2016/06/30/health/well_gubar2/well_gubar2-articleLarge.jpg">See a larger version.</a>

A page from “When David Lost His Voice.” See a larger version.Credit

Belinda suspects that if she gave the tapes to her husband, “he would listen to all of them the first night and after that he might lose them altogether.” So she determines to give them to a lawyer “who could dole them out one message at a time on the proper dates.”

About a father with larynx cancer, the graphic novel “When David Lost His Voice” considers what happens to a family when a reticent man becomes more silent during treatments for larynx cancer. In especially poignant pictorial sequences, the Belgian author and illustrator Judith Vanistendael focuses on David’s 9-year-old daughter, Tamar.

Pictures abound of Tamar’s last boat trip with her father, her swimming with the mermaid friend she encounters in the sea and sending a letter to a real friend via a balloon, her later conversations with this boy about how to preserve her father’s soul in a jar, her lying with David in his sickbed. These beautiful images convey the young girl’s fear of abandonment and her imaginative means of sustaining her attachment.

In the hospital, when Tamar hugs David’s emaciated body after his larynx has been removed, she wants her father to stay with her. Unable to speak, he writes her a note: “My darling, I am with you.”

Amid Ms. Vanistendael’s experiments with all sorts of visual forms — anatomical diagrams and scans, traditional comics, impressionist watercolors, pen and ink sketches, children’s book illustrations, surrealistic dreamscapes — I am especially moved by the small frames of David penning his note and of Tamar putting it into a vial she then strings around her neck, to remind herself that her dying father’s undying love will sustain her for as long as needed.

Susan Gubar is the author of the new book “Reading and Writing Cancer: How Words Heal.”

At the End of Life, What Would Doctors Do?

Photo

Credit Stuart Bradford

Americans have long been chided as the only people on earth who believe death is optional. But the quip is losing its premise. A recent profusion of personal narratives, best-selling books and social entrepreneurs’ projects suggest that, as a culture, we are finally starting to come to terms with our mortality. Nationally, the Conversation Project is engaging people to discuss their wishes for end-of-life care. Death Cafes and Death Over Dinner events are popping up across the country, reflecting an appetite for exploring these matters. So too, the Dinner Party and the Kitchen Widow are using meals as a communal space to explore life after loss.

Admittedly, contemplating mortality is not (yet) a national strong suit. That’s why these cultural stirrings are so significant. At a minimum, our heightened awareness and willingness to talk about illness, dying, caregiving and grieving will lead to much better end-of-life care. However, the impact on American culture needn’t stop there. Like individuals who grow wiser with age, collectively, in turning toward death, we stand to learn a lot about living.

Doctors can be valuable guides in this process. In matters of illness, people are fascinated by the question, what would doctors do? Consider the social phenomenon of Dr. Ken Murray’s online essay, “How Doctors Die.” Dr. Murray wrote that doctors he knew tended to die differently than most people, often eschewing the same late-stage treatments they prescribed for patients. The article went viral, being read by millions, and reprinted in multiple languages in magazines, newspapers and websites across the globe.

Dr. Murray’s observation even engendered studies of doctors’ preferences for care near the end of life. So far, results are mixed. In a Stanford study, 88 percent of responding physicians said they would avoid invasive procedures and life-prolonging machines. But a newly released comparative study of Medicare recipients, as well as a longitudinal study and separate analysis of Medicare data published in January, suggest that the actual differences between end-of-life treatments that doctors and nondoctors receive are slight. Perhaps like nearly everyone else, when life is fleeting, physicians find it difficult to follow their previous wishes to avoid aggressive life-prolonging treatments.

For what it’s worth, the terminally ill colleagues I’ve known, including those I’ve been privileged to care for, have usually been willing to use medical treatments aplenty as long as life was worth living, and took great pains to avoid medicalizing their waning days. In any event, the public’s interest in the medical treatments that doctors choose must not be allowed to reinforce our culture’s tendency to see dying solely through medical lenses. More to the point is the question, how do dying doctors live?

What dying doctors do with their time and limited energy, and what they say, are deeply personal, sometimes raw and often tender. Like everyone else, doctors experience pain and suffering – yet many speak of a deepening moment-to-moment sense of life and connection to the people who matter most.

Listen to a few.

Dr. Jane Poulson lost her sight to diabetes while still in medical school. After years of successful internal medicine practice, Dr. Poulson developed inflammatory breast cancer and knew it would claim her life. Writing in the Canadian Medical Journal she said:

In a paradoxical way, I think I can say that I feel more alive now than ever before in my life … When you presume to have infinity before you the value of each person, each relationship, all knowledge you possess is diluted.

I have found my Holy Grail: it is surrounding myself with my dear friends and family and enjoying sharing my fragile and precious time with them as I have never done before. I wonder wistfully why it took a disaster of such proportions before I could see so clearly what was truly important and uniquely mine.

About a year after being given a diagnosis of incurable esophageal cancer, Dr. Bill Bartholome, a pediatrician and ethicist at the University of Kansas, wrote:

I like the person I am now more than I have ever liked myself before. There is a kind of spontaneity and joyfulness in my life that I had rarely known before. I am free of the tyranny of all the things that need to get done. I realize now more than ever before that I exist in a ‘web’ of relationships that support and nourish me, that clinging to each other here ‘against the dark beyond’ is what makes us human … I have come to know more about what it means to receive and give love unconditionally.

Dr. Bartholome referred to this period before his death as “a gift.”

It has given me the opportunity of tying up the ‘loose ends’ that all our lives have. I have been provided the opportunity of reconnecting with those who have taught me, who have shared their lives with me, who have ‘touched’ my life. I have been able … to apologize for past wrongs, to seek forgiveness for past failings.

A healthy defiance is often palpable within the personal decisions of doctors who are living in the growing shadow of death. My friends Herbert Mauer and Lisa Mills, long-married oncologists, boldly renewed their vows before a crowd of family and friends during the months Herb was dying of cancer. In “When Breath Becomes Air,” the neurosurgeon Dr. Paul Kalanithi relates the decision he and his wife, the internist Dr. Lucy Kalanithi, made to have a child, while knowing full well that he was unlikely to see their daughter grow up. Such affirmations of couplehood in the face of death are not denial; but rather insubordination, eyes-wide-open commitments to living fully despite the force majeure.

Gratitude also commonly emerges in the experiences of dying clinicians. In one of our last email exchanges, my friend, the clinical psychologist Peter Rodis, wrote:

The shock of knowing I’ll die has passed. And the sorrow of it comes only at moments. Mostly, deep underneath, there is quiet, joyous anticipation and curiosity; gratitude for the days that remain; love all around. I am fortunate.

The neurologist Dr. Oliver Sacks concluded his essay “My Own Life” in exaltation.

Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.

These experiences are like dabs of paint on an Impressionist’s canvas. Taking in this contemporary ars morendi we can appreciate how dying and well-being can coexist. For all the sadness and suffering that dying entails, our human potential for love, gratitude and joy persists.

How fitting would it be for a corrective to the medicalization of dying to come from the medical profession itself? The general public’s interest in what doctors do can teach all of us about living fully for whatever time we each have.

Ira Byock, a palliative care physician, is founder and chief medical officer of the Providence Institute for Human Caring in Torrance, Calif. His books include “Dying Well” and “The Best Care Possible.”

Finding Ways to Keep Patients at Home

Photo

Credit Getty Images

My patient was a proudly elegant woman in her 70s who lived alone. Her Parkinson’s disease had so severely restricted her ability to move that it would take her hours to get dressed in the morning. And leaving the house was virtually impossible, so she had to rely on neighbors and friends from her church community for help with shopping.

She was adamant that she wouldn’t want aggressive treatment to keep her alive. She’d been hospitalized many times, and she told me she wouldn’t want to take a hospital bed that would be better used for someone else. So she dutifully completed an advance directive that made her wishes clear. It said that she would not want to be kept alive on a breathing machine, and that she wouldn’t want cardiopulmonary resuscitation if her heart stopped. She also wouldn’t want to be fed through a tube if she was no longer able to eat. What was most important to her, though, was staying at home and avoiding a nursing home.

As a palliative care physician, I always urge my patients to complete advance directives. These are legal documents that tell doctors and family members what treatment they do and don’t want if they’re ever unable to make decisions for themselves. That’s important, because if I don’t know what my patients want, the default is to do everything to keep them alive, which typically results in unnecessary and costly treatment. Indeed, one of the most often-cited arguments for advance directives is the fact that 25 percent of Medicare spending is for people in the last year of life.

When my patient developed a cough and a fever, likely a result of pneumonia, she became too confused to make decisions for herself. Thanks to her advance directive, her family knew that she didn’t want aggressive treatment, and we knew that she wanted to stay home. So we arranged for short-term daily nursing visits and enough support so that, with additional help from her family, she was able to remain at home as she wanted.

I thought that she would get worse without aggressive treatment in the hospital, and that we would enroll her in hospice, so I was surprised when she began to improve. Soon she was able to make decisions for herself and even returned to the same level of independence that she’d had before she became sick. That’s when it became obvious to me that advance directives have their limits.

My patient lived, as many people with chronic, serious illnesses do, on a thin ledge of independence. The smallest nudge — a few missed medication doses, the loss of just a little support — left her entirely vulnerable. In my patient’s case, that nudge came two months later, when her neighbors ran into financial problems and their daughter, who had been doing the grocery shopping for my patient, had to take an after-school job. My patient valued her independence more than anything, so whenever her neighbors and her out-of-state family checked on her, or when we called her, she told us all that she was fine.

For three weeks, my patient subsisted on nothing but white rice, because that was all she had in the house. When her grand niece called us and asked us to check on her, we sent a social worker and a nurse to visit her. We found her housebound, surrounded by garbage, with no clean laundry and no toilet paper.

Despite our best efforts, we couldn’t do enough to keep her safe at home, so she went to live in a nursing home, where she spent the last two months of her life. An advance directive had helped her stay out of the hospital, as she had wanted. And perhaps it even made a bed available for someone who needed it more, as she’d hoped. But that piece of paper didn’t help her to live out her final months with the sort of comfort and dignity that she deserved.

When we talk about advance directives and reducing costly and unnecessary treatment at the end of life, we should also be talking about ways we can provide more support. We need to make sure that people like my patient have access to the kinds of care that can help them remain safely and comfortably at home.

Now when I help my patients complete an advance directive that defines the treatment they don’t want, we also discuss what support they’ll need in the future. I talk with my patients and their families about what’s going to be necessary to keep them safe and comfortable in their homes today, and next month and — if they’re lucky — for the next few years.

Those sorts of discussions are essential, but they’re not enough. We also need to revise the way we think about advance directives. Advance directives help reduce health care costs at the end of life by avoiding aggressive treatment, but that’s not the most compelling argument for them. It’s not enough to reduce what we spend on aggressive treatment at the end of life; we also need to spend those resources in better ways.

For someone around my patient’s age, the average cost of a hospitalization is about $13,000. So Medicare should have been willing to spend $13,000 to keep her safe and comfortable at home. That sum would have been more than enough to pay for a visiting nurse to continue to check on her after she recovered from pneumonia and a home health aide to help her with bathing and dressing. And it could have paid the girl next door to do her grocery shopping so a frail elderly woman didn’t need to subsist on white rice because it was the only food she had.

We should have been able to provide all of that help. My patient was adamant that she didn’t want to spend her last days of life in a hospital, taking up a bed that someone else could use. Let’s make sure that when people like her forgo costly treatment at the end of life, they get something in return.

Dr. David Casarett is a professor at the University of Pennsylvania Perelman School of Medicine and the author of “Stoned: A Doctor’s Case for Medical Marijuana.”

For more fitness, food and wellness news, follow us on Facebook and Twitter, or sign up for our newsletter.

Coloring Your Way Through Grief

Photo

Credit Lisa Powell Braun

There is no disputing the adage that “into each life, a little rain must fall,” and the occasional need for a protective umbrella, but what do you do when the shower becomes a downpour that doesn’t seem to quit?

One shattering loss can be enough to derail a person for years, even for life. But tragedy seems to stalk some people, and it is reasonable to wonder how one goes on in the face of repeated painful losses.

Deborah S. Derman, a professional grief counselor in suburban Philadelphia, has clearly suffered more than her fair share. “The field of grief counseling sort of found me,” she said, “because I had such a long history of loss.”

She weathered her first devastating loss at age 27, when the boyfriend she had broken up with retrieved the vacuum cleaner she had borrowed, attached the vacuum’s hose to the exhaust pipe of his car and killed himself.

Fast-forward a decade: Now happily married and mother of a toddler, she was waiting at the airport for her parents to arrive when the private plane her father was piloting dropped from the sky and crashed in front of her, killing all four passengers aboard.

Four years later, while playing rugby, her husband died of a heart attack, leaving her a widow at age 39 with two young children and a third on the way. Then a few years later, she learned she had a rare form of breast cancer. “That’s when I felt I had a target on my back,” she told me. Her biggest fear, she said, was that if she died, her children would be orphans.

But she didn’t die. Instead, she managed to bring up the three children, marry again “a wonderful man” who adopted them, and earn a Ph.D., writing her dissertation on grief and attachment in young widowhood.

Dr. Derman has since been in private practice as a grief counselor, able to bring far more than professional training to the therapy she provides for those who have suffered losses. She has helped families on Staten Island who lost loved ones on 9/11, counseled breast cancer survivors, and conducted support groups for people weathering all manner of loss and grief.

She knows firsthand how important it is to say the right thing early on to someone who is hurting and vulnerable. When her former boyfriend committed suicide, “I felt like I was an accessory to his death,” she told me. Her mother helped to assuage her guilt by reassuring her that “this is not your fault.”

But when her husband died, her parents were no longer around with wise words. She recalled, “I was in so much pain, the grief felt physical. I was unable to concentrate on anything – I couldn’t read a book or hold a conversation. The only thing I could read were self-help books on loss and grief, looking for answers to how to get through the anguish I felt. I was so isolated and frustrated. No one knew what to do with me.”

She couldn’t even feel happy when two months after her husband died, she was accepted into a doctoral program in psychoeducational processes at Temple University. Advised to speak to another young widow, she was beaten down even further when the woman said, “Debby, do you know how you feel that your life is over? Well, it is,” which she said prompted her to take to her bed.

But she decided to get up and try a different approach after her sister said: “One day, Debby, this will be your past,” which made her realize that she might indeed have a future. She said she switched her field of study to grief and loss “because I never wanted another widow to feel as isolated as I did. I wanted to know how a person heals, so I can help others heal.

“Healing is a lifelong process, and elements of grief can occur at any time,” she said. “I’ve been widowed now for 24 years, but when my son got into medical school, I cried because my husband and parents weren’t there to see it. My daughter is about to graduate from college, and we will both cry because she never even knew her father. Her grief is different, but it’s not absent.”

Now Dr. Derman has produced an intriguing new tool – an adult coloring book intended to help others “get through tough times.” Called “Colors of Loss and Healing,” the book consists of 35 pages of lavish illustrations to color, each relating to a word or phrase, like “one day at a time,” “bitter and sweet” and “resilience,” meant to evoke thoughts and feelings that can help to promote healing.

Opposite each illustration, designed by Lisa Powell Braun, is a blank page with the heading “My palette … my words … my thoughts,” to prompt people to write down the feelings the words and phrases in the illustration evoke.

Dr. Derman said she had kept a journal after her husband died. “When you have to write something down, it really clarifies your thoughts and helps you know how to proceed,” she said. “In a journal, you can say whatever you want. No one else has to read it — it’s private.”

While art therapy has been used for decades to help people express what they can’t put into words, filling in the spaces of a coloring book has a different kind of benefit: enabling people to relax and be more focused. Marygrace Berberian, a clinical assistant professor in art therapy at New York University, said, “Research has shown that art making can have a profound impact on a person’s physical and psychological well-being. And coloring within an outlined structure can help to contain and organize feelings of distress and helplessness.”

In 2005, Nancy A. Curry and Tim Kasser of Knox College in Galesburg, Ill., reported in Art Therapy, Journal of the American Art Therapy Association, that coloring a mandala reduced anxiety in undergraduate students, a finding that has since been replicated and expanded. Today, there are adult coloring books to help alleviate stress and anxiety, release anger, induce calm and enhance mindfulness.

Dr. Derman’s idea for her book was prompted by a coloring book she received for her birthday last Christmas. “I colored one space, then another, and another, and realized this is how I proceeded through my life — one small step at a time. This is a good paradigm for how a person gets through loss, one day at a time. After my husband died, I didn’t think I could make it through a whole day. I looked at my watch — it said 10 a.m. — and made a deal with myself to make it to 11, then 12, then half a day.”

The book is meant to help people with losses of every kind, including illness, divorce, financial ruin, post-addiction — anything that might force people to redefine their identity.

Dr. Derman emphasized, “It’s not a recipe book. It doesn’t dictate how people should feel. We all go through grief and loss in very unique ways. One thing I’ve learned from my life and the hundreds of people I’ve counseled: Don’t try to pretend it didn’t happen and walk away fast.”

Related:

For more fitness, food and wellness news, follow us on Facebook and Twitter, or sign up for our newsletter.

Seeing the Cycle of Life in My Baby Daughter’s Eyes

Photo

Credit Giselle Potter

Like many new fathers, I spend as much of my free time as I can get away with gazing into my baby daughter’s eyes as she stutters and scans. I remember a day not long ago when I rocked my daughter, Eva, in my arms, and her eyes stopped and steadied as they looked back into mine. Her arms and legs ceased to rock and her entire body just relaxed. A chill went down my spine.

I felt that for the first time, she had really seen me. She was about 3 months old at the time. Within moments, though, her eyes left mine and started whirring around in their sockets again. While this was the first time I had shared such a moment of joy coupled with disappointment with her, I had experienced this many times with patients at the end of life.

Many have alluded to the symmetry of the beginning and the end of life. Most people, however, become parents long before they become caregivers. For me the order was reversed. For while I only recently became a father, medical training has made me much better acquainted with those at the opposite end of the spectrum.

The agony of death is more than just physical – it is an existential wound that gnaws away until there is slow, and frequently unwilling, acceptance of the inevitability of one’s mortality. I sometimes see a similar pain in my baby girl’s eyes as she makes another arduous journey – learning how to be alive. Frequently, as she cries when she is hungry, or cries when she is overfed, or cries as she tries to have a bowel movement, or just cries, it seems as if she is yearning to go back to the simple comforts of her mother’s womb.

Changes in the medical system have brought the medicalization of the shallow slopes of our bell-curve-shaped lives. At the start of the century, most lives started and ended at home. However, while hospitals started to become the place where we took both our first breaths and our last in the 20th century, in recent years people have become eager to reverse both trends. Nutrition, too, has shifted from being completely natural, to being almost exclusively artificial formula for children and tube feeding and intravenous nutrition for the terminally ill, followed now by a realization that natural routes are best for both groups. What hasn’t changed, and what binds the pediatric and the geriatric, is the obsession with their bowel movements.

As medical science has progressed, while we have extended life, we have transformed death from a singular event, into dying, an entire phase of our lives that can last from days to years. This is mirrored by an extension of childhood as well, with children being more dependent for a longer period of time than ever before in human history. Parenting therefore has become more demanding – and more expensive.

Caregiving for those at the end of life, as those who live it will attest, is equally arduous yet is barely recognized at a similar scale. In some ways, caregiving is similar to parenting – women do most of the heavy lifting. In fact, two-thirds of all caregivers are female. Yet, caregiving for the dying is different from parenting because it does not yet have a formally recognized role within the care of the patient. While there is no chance Eva would ever see her pediatrician without her parents, elderly patients, some with levels of dependency equal to that of a 3-month-old, present to the hospital or clinic all by themselves, all the time. Furthermore, while there is much debate about paying workers through maternity or paternity leave, a similar discussion does not exist around whether leave granted to those caring for parents or loved ones at the end of life, particularly those getting home hospice services, should be paid.

Part of the problem is also how differently we view infancy and old age. A daily struggle my wife and I face is how to hold back from oversharing pictures and videos of Eva on social media. We document her life meticulously, afraid of letting any single gesture slip away. Yet, not only do we siphon off old people to live outside of our immediate circles, but images of what the end looks like are scant, uncelebrated and frequently morbid. There is a significant disparity of empathy toward children versus the elderly. Children’s shortcomings turn into viral YouTube videos, while those of the elderly are often derided and ridiculed by the very people charged with taking care of them.

In a more longitudinal sense, we care for our young the same way people have for thousands of years yet how we die has changed significantly over just the past few years and continues to be in flux. Advanced technology means that many people require much more assistance at home than before. Furthermore, while our lifespan has been extended dramatically, the years we spend with disability have also increased. Therefore, while we have had eons to define our roles as parents, the modern caregiver remains undefined and unrecognized, and thus, unsupported. Investing in children makes intuitive sense, but a similar case has not been built for taking care of the elderly.

As with raising a baby, the answer might come from the heart. What is really needed is for us to love the old as we do the new and celebrate the end as we do the beginning.

Haider Javed Warraich, M.D., a fellow in cardiology at Duke University Medical Center, is the author of the book “Modern Death – How Medicine Changed the End of Life,” coming in February 2017.

Related:

Interested in more Well Family? Sign up to get the latest news on parenting, child health and relationships with advice from our experts to help every family live well.

In the Hospital, Resisting the Urge to Do More

Photo

Jessica Nutik Zitter is featured in the upcoming Netflix documentary “Extremis,” premiering at the Tribeca Film Festival on Sunday.

Jessica Nutik Zitter is featured in the upcoming Netflix documentary “Extremis,” premiering at the Tribeca Film Festival on Sunday.Credit

There was absolutely no way around it. She was dying. I gave her a few hours at best, with maximum pedal to the metal intensive medical care. Paramedics had picked up this homeless woman after she collapsed under a bridge in Oakland, Calif. Her heart had completely stopped. She had died under that bridge. But the paramedics had somehow pulled her back, with a jump-start to her heart. And then brought her right to my service in the intensive care unit.

She had no known family, and the police were trying to track down anybody who could speak for her. No luck so far, the social worker told me.

She was emaciated, with an incongruously large, round belly, hard as a basketball. Her hair was knotted and tufted, her lips cracked and dry around the breathing tube. By the time I saw her, she had already been treated by many health care professionals. They had done CT scans, inserted large catheters into larger veins, and started various drips.

Now it was my turn to take over.

The situation was dismal. This 51-year-old woman had all of the dreaded and irreversible complications that come with chronic alcoholism. Crucial organs were failing. Her liver, the organ that produces the sugars needed for life as well as for clotting and detoxifying the blood, was almost completely shut down. Now a tight nub of scar tissue, it functioned like a clogged sieve, preventing fluid from returning to the heart. And so liters of it pooled in her abdomen, giving her the look of a woman in her final days of pregnancy. Her pancreas was in tatters from repeated bouts of alcohol-induced pancreatitis over the years. Her kidneys had been limping along for months on the verge of failure, and had now completely shut down.

And on top of all this, she was in profound shock, her blood pressure having sunk to the lowest readings attainable, despite being “maxed out” on blood pressure support medications. Shock can have a few different causes. And we medical detectives, like those on the TV show “House,” are driven to narrow down the possibilities until we arrive at an answer. We order numerous tests, many of which are risky and painful. For dying patients, these tests often don’t provide helpful information anyway — they rarely change the outcome, and may even kill the patient.

And there was no doubt this woman was dying.

As if this scenario weren’t awful enough, her brain was profoundly and irreversibly damaged. The CT scan of her head painted a grim picture. The cells of her cerebral cortex, those which give us our personhood, consciousness, cognition and independence, were swollen and dying, and there was no chance of reserving it. She would never again wake up.

But it’s not that simple for an I.C.U. doctor. Our training urges us on, even when it is clear our patient is dying, and especially if there is no family to consent to putting the brakes on.

And so my intensive care instincts urged me on. There were many things I could imagine doing. Lowering the acid level in the blood with bicarbonate, draining the fluid from her belly, increasing the blood pressure medications, starting dialysis. I watched as my residents ran in and out of the room, procuring the various catheter kits that would be threaded into her body to perform these functions.

But I felt another pull too, from another part of my medical training — palliative care. This specialty had taught me an approach to the care of suffering and dying patients that differed from the one I’d learned in my I.C.U. training. Over the years I had come to see that the interventions I performed in the name of lifesaving often didn’t help my patients, but rather compounded their distress, without significant benefit.

I told my residents we needed to talk.

We convened outside the room. They hovered around me like hummingbirds, barely able to stand still. They were on autopilot, I saw; the impetus to do something was tremendous. I recognized their agitation, and understood how self soothing action — any action — would be.

“Let’s talk about how that’s going to help,” I said, pointing to one of the catheter kits.

The senior resident stared at me, dumbfounded. She had a job to do, and I was restraining her. There were still unanswered questions. There was a diagnosis to pursue, an acidosis to correct, a big belly to consider deflating.

“But will those answers change anything?” I asked

They kept coming up with new suggestions. With each, I asked them how it would change our course. Perhaps I was hoping they could convince me that there was something more we could do to save this woman. Yet the patient was already on maximal treatment, and she was still dying. My resident argued that the right thing to do was to try to keep the patient’s body alive until family came. But our social workers had not found any trace of family after an exhaustive search.

One thing we could do, I pointed out, was to treat her for pain and anxiety. Even though she was completely unresponsive, she may still have been aware of them on some level. These well-meaning doctors had been taught that the priority was curing the disease, and hadn’t thought of treating symptoms.

I too felt most comfortable when I was doing something to address each medical problem. Even if, in the back of my mind, I didn’t expect it to help. Refraining from action went against all of my medical instincts.

And so often, when a patient is actively dying, I must hold myself and my residents back, quiet our itchy fingers, and acknowledge that we find ourselves in the uncomfortable position of waiting for nature to take its course.

For the next several hours, as the patient lay tethered to the machines, we sat on our hands. Because we hadn’t located any family, I didn’t withdraw any existing treatments. But I didn’t let my residents initiate any new ones, either. Not the blood gas, nor the Quinton catheter, nor the arterial line. Instead, I started a careful dose of pain and sedation medications. We would stay the course.

She died within a few hours. It was a case I don’t think any of us will forget. But I believe we did right by our patient. We acknowledged that we couldn’t save her, and resisted the urge to treat her untreatable disease — and instead treated her suffering.


Jessica Nutik Zitter is a critical care and palliative care physician at Highland Hospital in Oakland, Calif. She is writing a book about her work, and is featured in “Extremis,” a documentary by Dan Krauss, which debuts April 17 at the 2016 Tribeca Film Festival.