On February 25th in the New York Times, two stories appeared about nurses. Both sobering. Both timely. Both essential.
In my last post, I celebrated the fact that although the pandemic is killing scores of people and putting a strain on resources, including health care personnel, nurses have been in the forefront of the media getting the recognition that they have long deserved. And more nurses are speaking out by telling their stories. Long overdue.
However, the two stories in the NYT need to be read/viewed. One is by Theresa Brown who I have many times spot-lighted here because of her accurate assessment (my view) of nursing issues. A nurse herself, she has been calling attention to the nursing profession in the media and through her books.
Brown’s piece: Covid-19 Is “Probably Going to End My Career,” is an exposé of what is terribly wrong in the profession and what should be done. She writes bravely and honestly about the precarious state of organized nursing.
The second article, One I.C.U. Two nurses with cameras, is written, not by a nurse, but by a photojournalist. He filmed a fifteen-minute video that is raw footage of two nurses working with dying Covid patients in the ICU. Unvarnished, compelling and poignant. It’s a must watch that shows exactly what nurses experience during their shifts.
I’ve attached the links to both essays. The fifteen-minute video is imbedded in both.
I’m not writing my second book whose working title was to be “Home Visits.” The Pandemic has cast a spell on my brain, resulting in lethargy and an inability to focus on structuring another book. So, instead, I’ve decided to take each home visit story and submit it to a literary magazine for potential publication as a “stand-alone” essay. I plan to email one of the stories, Country Music, at the end of this week to an online journal.
Country Music tells the story of three patients that I cared for when I worked as a nurse practitioner in a home care program at a Veterans Hospital outside of Chicago. They were at various stages of dying. In the late 80s, the hospice movement was just taking baby steps into the medical/nursing world. I was learning about dying and death from my patients and their caregivers.
The locations of the three patients’ homes lined up perfectly for me to make the visits to them conveniently in the same day. This lasted for about three months. On the day of the story, a dreary, rainy day, I show the challenges I faced working with my three male patients and their wives (few women were enrolled in the VA health care system at that time), how each man played the hand he was dealt and how the women dealt their husband’s decline.
One of the men loved country music. Talking with him about songs and artists, rekindled my interest in the genre. I found a great country western radio station on my government-issued compact car. The earthy, raw lyrics telling of common human emotions became my therapeutic passenger that accompanied me on my home visits.
While I am editing this story for submission, I find myself checking into YouTube to listen to the familiar songs that supported me so many years ago. This is more fun than writing that second book.
I haven’t posted any stories about what physicians face when working on the front lines during the Covid-19 pandemic. Of course, my Blog is about nursing. In more recent years, the collaboration between nurses and physicians has grown. The professions work together with more mutual respect than when I began my nursing career. And physicians on the front line of the Covid-19 pandemic risk their lives just as nurses do.
I have reblogged a story written by a physician who is working “extra on-call time” to care for the new admissions at a local hospital. I read this essay in the online publication: Pulse: Voices from the Heart of Medicine.
I highly recommend reading Pulse, which publishes each Friday. There you will find stories that show the human aspect behind the practice of medicine.
In Need of a Prayer
Posted By Jo Marie Reilly On December 16, 2020 @ 10:44 pm In Stories
The new patient’s name is Emmanuel. He was sent from his nursing home to our emergency room with a cough and fever. The oxygen level in his blood is well below normal, and he’s gasping for air.
It’s my third week in the local community hospital ER. I’ve been putting in extra on-call time during the COVID pandemic. It’s been rough to get back into the emergency setting while continuing my day job as a family doctor and medical educator. I’ve been sharing admissions with the hospitalist, who’s joined me in the on-call room.
“I’ll take him,” I tell my colleague.
“Sure?” he asks, eyebrows arched over his face mask.
I almost forgot about Dennis. That’s what Carol Novembre thinks his name was. Carol and I worked together in the early 60s at Pollack Hospital in Jersey City. It was a county-run hospital. Dennis was head of maintenance. I learned a lot from him about the political corruption that went on behind the scenes. Not that I had any doubts about the kickbacks and abuse of power. I had seen the cases of liquor at the loading docks that were to be delivered to the administration suite (aka “the penthouse”). One time when I answered the phone on our nursing unit, a voice at the other end reminded me that my “donation” of five dollars was due in order to keep my job. When I identified myself as a nurse, the male voice apologized profusely.
Dennis, a tall, lanky guy with a pocked marked face and disheveled clothes, made rounds in the hospital when he wasn’t off-site, overseeing the unofficial work of prisoners. He would bus the prisoners from the county jail to work on the administrator’s suburban house—building a fence, painting the siding, tending to the gardens in the summer. He seemed especially fond of the nurses. If he learned one of us had missed lunch, he would run down to the kitchen and reappear with a bacon sandwich.
Reminiscing about Dennis was only one of the memories that resurfaced as I spoke to Carol last week. I had asked her if I could write about the fact that she was one of the first dialysis nurses in the country. I worry that as nurses age and die off, stories of nursing history will be lost. My stories included.
You will read more about Carol Novembre in a future post. In the meantime, here is a story I had published about one of the patients I cared for while I worked at Pollack Hospital in the mid-60s.
CLOSING THE DOOR
I screwed off the cap of the Black and White Scotch bottle and I carefully measured out sixty milliliters, two ounces, into a medicine glass. The alcohol fumes gagged me every time. Then I grabbed a pack of Lucky Strikes from the carton on the shelf next to an aspirin bottle. Cigarettes and Scotch balanced precariously on a small tray. I locked the door to the tiny medication room and went in search of Charlie Hobbs.
The tobacco smoke clouded the air in the patients’ lounge. The drab room was empty except for a middle-aged man in blue pajamas staring at pieces of a jigsaw puzzle on the card table in front of him. A cigarette clung to his lower lip.
At times, I imagined myself the airline stewardess I had always wanted to be. Coffee, tea, or me? This day I was a Playboy Bunny as I bent at the knees, stretching to place the drink in front of Charlie, while his blue eyes riveted on my imagined cleavage. But Charlie’s eyes fixed solely on the amber liquid. Not once in the past four weeks had he acknowledged me, the young nurse in a starched white uniform with thick support hose and practical shoes. An unlikely dispenser of booze and butts.
Charlie had arrived with no suitcase, only the clothes he wore. The faded blue hospital pajamas and robe comprised his daily wardrobe. One of the other nurses had donated slippers. I looked down at the top of Charlie’s wild red hair. “I got to get me another puzzle,” Charlie said without looking up at me. “This here one is almost done.” He snuffed the cigarette butt into an overflowing ashtray and reached for the drink. I was glad Charlie had decided to shower that morning or else his pungent body odor would have added to the foul air.
Charlie shuffled the jigsaw pieces about by day, and watched television by night, all a maneuver, I thought, to keep human interaction at bay. No one ever visited him. Did he even have a home to go back to?
Dr. Clark’s research money supported Charlie’s hospital stay. Dr. Clark needed recruits who would agree to have a cardiac catheterization in order to see the effects, if any, that alcohol had on their hearts. Cardiac catheterization was the latest tool of the sixties. It measured heart function but carried the risk of injury and even death.
Dr. Clark scoured the downtown bars searching for men who drank excessively. On a warm summer night about a month ago, Dr. Clark had gotten lucky. Charlie seized the carrot: a roof over his head, three squares a day, free liquor and cigarettes. He agreed to live on the third floor of the county hospital for four weeks and then undergo a cardiac catheterization.
I carried the empty medicine glass on the tray back to the nursing station. How could Charlie drink alcohol at nine in the morning? Or all day long, for that matter? What would make a man so desperate that he would consent to have a procedure that might kill him?
Even though I didn’t particularly like Charlie, there were times as I placed the Scotch in front of him that I wanted to nudge him and jerk my head towards the exit sign down the hallway. Get out, Charlie. The catheterization isn’t worth all the free alcohol and cigarettes that Dr. Clark’s giving you. Get out. Now. But I didn’t have the audacity to undermine Dr. Clark’s research, no matter how conflicted I felt.
At twenty-three and a nurse for just two years, I vacillated between professionalism and irreverence. I struggled with knowing when to step back and when to dig deeper into my patients’ psyche. How to be empathic and not sympathetic. How to balance cool detachment with overbearing involvement. Charlie needed someone on his side to help him understand what he was getting into.
Nellie Mineo interrupted my thoughts as she waved to me from the doorway of her husband’s room. She looked like the Italian housewife that she was: salt and pepper hair piled in a bun on the top of her head. A well-worn cardigan sweater covered the simple cotton dress she wore. Behind her thin frame I could just make out her husband’s outline under the starched white sheets.
The Mineo’s had known the chances weren’t in their favor when they first met with Dr. Clark to discuss replacing Joe’s diseased heart valve with an artificial one. At that time Joe was so short of breath that he could hardly talk, much less continue to work in the family grocery store. Joe had been my patient during the week Dr. Clark evaluated him for surgery. The Mineo’s large, gregarious family resembled my own extended Italian family. Joe could’ve been my Uncle Tony with olive skin, dark eyes and soft smile.
An artificial valve, which clicked audibly, replaced Joe’s faulty one. I had worked overtime on the surgical unit as Joe’s private nurse the first night after surgery. At first things looked great, but soon Joe developed a cough, and then his legs swelled. Diuretics only worked for a while, and the antibiotics failed to prevent the infection from ravaging his body. Although the valve was being rejected, it continued to click on.
Joe had the first room near the nursing station. The floor was dedicated to research and held only fifteen patients. The patients stayed for a long time or returned frequently for evaluation. Not surprisingly a strong bond developed between the professional staff and the patients and their family.
Joe’s family and friends usually came and went at all hours, but this day only Nellie stood guard. When I ambled towards her, she grabbed my hand. “He looks worse,” she said, rubbing my hand in absent-minded distraction. “Promise me you’ll stop in before you go off duty today.”
Nellie and I both knew that there would be no miracle for Joe. His once muscular body shriveled into sagging skin covering a bony frame. He didn’t open his eyes to Nellie’s voice. Even a sharp pinch to his face couldn’t get a reaction. “Stop and see me before you go off duty,” Nellie repeated. I nodded. Only then did she loosen her grip on my hand.
At the end of the day, as I flung my coat over my arm, I heard a racket from the patients’ lounge. Charlie stomped past me, head down and fists clenched. “I’m outta here.”
“What happened?” I asked the nurse who jogged after Charlie.
“Charlie kicked over the card table. No reason I could see for this.” She shrugged her shoulders and continued down the hall.
Nellie watched the commotion from the other side of the hall. I walked towards her. She pulled me into her husband’s room, grabbed my coat and purse and held them tight against her body. She stared at me for a long while without speaking. From behind her I could hear Joe’s wet bubbly breaths. Even in my short stint as a nurse I recognized the rancid smell of impending death.
Nellie moved her face closer to mine and whispered, “He’s dying.” She caught a sob and swallowed hard. “I don’t want him resuscitated. Stay with us, please stay with us. Don’t let them resuscitate him. Please don’t.” She wept quietly, clutching my coat and purse closer to her body.
What was I to do? I had never faced this dilemma before. I knew Nellie had witnessed plenty of resuscitation attempts as she lingered outside her husband’s hospital room day after day. Cardiopulmonary resuscitation was so new that all patients were candidates. At the first moment a patient stopped breathing, we leaped into action. We flung him to the floor and straddled him. With the side of our hand we walloped the sternum to get the heart started, then breathed frantically into his mouth. Pumped on his chest. We worked until we were exhausted. In most cases the patient died anyway with fractured ribs and a lacerated liver. Nellie didn’t want this for Joe.
Thoughts flew in and out of my mind. If the staff saw Joe turning blue, they wouldn’t give a second thought to trying to revive him. A resuscitation attempt might bring Joe “back to life,” but only briefly. Then there would be more pain and agony before his heart gave out and he died—again.
What would I want for Uncle Tony? A quiet death, or zealots in white coats beating on his chest? What should I do? Was there a choice? I looked at Nellie, her dark eyes pleading.
I heard Charlie’s voice from down the hall spewing curses. Perfect timing. Charlie would leave the hospital AMA—against medical advice—right before his scheduled catheterization. I hoped whatever he was up to would distract the staff just long enough for Joe to die.
My heartbeats kicked up a notch as I reached over and slowly shut the door. Nellie’s hold on my coat and purse relaxed and they slid to the floor. Wordlessly, she settled down in the chair next to Joe’s bed, lifted his limp hand into her lap and clutched it. I commandeered the chair by the door: the sentry blocking the enemy from entering.
I sat knotted tight while Joe’s breaths became more erratic. The lapses between his gasps for air stretched farther apart. Just when I thought he had quit breathing, he gulped for air.
Finally, the mechanical valve stopped clicking and the room became silent. I walked to the bed and placed my hand over Joe’s clammy hospital gown. I didn’t feel any movement in his chest. I didn’t feel a heartbeat. Joe’s open eyes stared at nothing. I stood there for a long minute before I smoothed down his lids.
Nellie gripped her husband’s hand to her breast and sobbed softly.
I stood over her, my hand lightly on her shoulder. While I felt relief that Joe died peacefully with his wife by his side, each footfall by the door made my heart flip. What if one of the staff would walk in and find I had made a decision that wasn’t mine to make. “ I really need to leave, Nellie,” I whispered, taking Joe’s lifeless hand from hers and placing it by his side.
Tears slid down Nellie’s cheeks. She rose from the chair and embraced me. “Thank you,” she said, her voice cracking. I felt Nellie’s tears soaking into my shoulder as my own tears fell. Then Nellie pulled away and sat back down next to Joe, taking his hand again into her lap. I wiped the moisture off my face with the back of my hand, grabbed my things from the floor, cracked open the door, and glanced up and down the hallway. No one was around. Retrieving my coat and purse, I walked leisurely toward the exit leaving Nellie waiting for the evening nurse to discover Joe dead in the bed.
The floor was unusually quiet. The medication door was ajar in the nursing station. I had no intention of poking my head inside and saying so long to the evening nurse. Just a few more steps and I would be in the clear. As I turned the corner of the white tiled hallway, Charlie Hobbs’ presence blocked me. “Hi,” he said as if we were old friends. “I’m leaving. Can ya spare a buck for bus fare?”
Charlie had on a bright green jacket I was sure wasn’t his. Noticing my eyes on the jacket, he said, “Borrowed this from the guy in the next room. I’ll return it.” I nodded even though I knew the coat would never make it back to its owner. He shifted his feet nervously as he waited for my answer.
I wasn’t anxious to break any more rules but I was glad he was leaving. Why even try to entice him to stay? That would be hypocritical. I reached into my purse guessing he would head for the nearest tavern rather than the bus stop.
“Thanks,” he mumbled. Shoving the dollar bill into the pocket of the purloined jacket, he turned abruptly. In two long strides he disappeared though the doorway under the red exit sign and raced down the steps. I followed. A cold wind chilled my stocking legs as Charlie opened the door at the bottom of the stairs to the outside world. In his haste to escape he let the heavy door slam shut behind him.
I pushed the heavy door open with my shoulder. Unlike Charlie, I had no desire to announce my departure from the hospital by slamming the door. Leaving my covert actions behind me, I griped the handle with both hands and eased it closed.
The Closing the Door was a winner of the TulipTree’s Stories that Needto be Told Contest and is featured in their 2016 anthology: Stories that Need to be Told.
I believe nurses are best poised to change the future of healthcare.
Today, registered nurses spend more time physically present with patients than any other healthcare professional, and as a consequence we see and hear a lot. We maintain a vantage point markedly different from that of the MD, the scholar, the journalist, and the policy maker. We are intimately familiar with the complexity and multiplicity of the patient experience, as well as the systems in health care that fail to acknowledge it. We witness the system’s barriers regularly, and in turn we come up with creative solutions to side step its most vexing realities.
(Sana Goldberg, How to be a Patient: The Essential Guide to Navigating the World of Modern Medicine, page XXIV)
Doesn’t that last sentence remind you of Teresa Brown’s New York Times Op Ed essay that I posted just last week? Side stepping vexing realities is another way of describing the “workarounds” that Brown described.
I’m using another book written by a nurse for my talk. Finish Strong: Putting Your Priorities First at Life’s End by Barbara Coombs Lee, who besides being a nurse is a lawyer and President of Compassion and Choices.
Both books are well written and easy to read and full of great information that older readers will find helpful. And, of course, I am pleased that they are written from a nursing perspective.
Next Sunday, November 5th, will be the 20th anniversary of my mastectomy. Afterward, my surgeon draped her arm over my shoulders and said I was “cured” as she escorted me out of her office on Connecticut Avenue in Washington, D.C.
Each November 5th , I would make a big deal of the anniversary date of my surgery, or my second birthday, as I called it. I went someplace special. Like a superstitious baseball player, I ran through the same ritual when I came to bat. I wrote down what I was grateful for in my journal, contacted friends and family, telling them how much I appreciated their concern and attention when I was in the throes of cancer crazy and then scheduled something I would do all alone.
The first year, I took Amtrak from Union Station in Washington, D.C. to New York City and ambled up Fifth Avenue on a glorious fall day. In Central Park, I ate a hot dog with mustard and sauerkraut and listened to a skinny old guy dressed in a bright blue suit with a vest and spats, who sat on a bench across from me, playing a ukulele and singing songs my mother and I had listened to on the small radio on top of the refrigerator when I was a kid and she cooked supper. Wait till the Sun Shines, Nelly. Over There. Don’t Sit Under the Apple Tree with Anyone Else but Me. Filled with nostalgia of my childhood and gratitude for my life, I licked the mustard off my fingers and walked back down Fifth Avenue to Penn Station and back home. I repeated some version of this for the next nine years.
However, when my ten-year anniversary rolled around, I decided I would no longer engage in this superstitious ritual. I no longer needed to hang on to the label of cancer survivor, or replay each detail of the cancer journey as a holy event.
On another glorious fall day, I traveled from my new home in Chapel Hill, North Carolina back to DC for what I called the last celebration. First, I had lunch with Cathy, a nurse who was diagnosed with breast cancer around the same time as I. While I had stage 0—no infiltration, she has stage III. She sat across from me in McCormick & Schmick’s front dinning room, a seafood taco salad front of her. She had lost 30 pounds, intentionally, and looked professional with her soft beige jacket, long green velveteen skirt and government ID hanging around her neck. During radiation treatments she had worn a strawberry blond wig. Rather wild for a woman in a religious order.
“Well, I believe that if I didn’t get breast cancer, I would be still be living in the religious community. It was having cancer that lead me to evaluate where I was and why. It took two years from the first questioning to finally leaving,” Cathy said as she snapped off a piece of the taco shell, and scooped up some beans and fish into her mouth. I wasn’t surprised she left—she always struck me as an independent person—more of a free spirit than a follower who vowed obedience to an organized religion.
“Remember when we talked about whether or not cancer had changed us? You said you were still the same, right?”
“Yeah,” I said, “ I wished I would have become a better person, more caring and polite. But I am the same big mouth from Jersey City. Clumsy and rude.”
Cathy laughed even though she had heard this before.
“Are you happy?” I didn’t know why I asked her—she looked content.
Her eyes widened. “I thought I was going to die.”
Maybe a cancer diagnosis does change you. Not overtly. Some foreign emotion tugs at your gut: an awareness that only rises when it’s important. I didn’t do anything great. I just lived more honestly. Taking responsibility for my own thoughts and actions, I needed less approval from others.
After lunch Cathy went back to work and I headed to the National Cathedral on Wisconsin Avenue.
While my “lesions” were investigated and various treatments were discussed, I frequently made a detour on my way home after work to the Chapel of the Good Shepherd. Small, with seating for seven worshipers, the chapel was tucked away off the courtyard on the crypt level of the cathedral. There I would sit with my fears, always alone. The cool concrete walls, dim lightening, and silence calmed me. I focused on the stature of Christ, a lamb cradled in his arms, his hand burnished smooth by the touch of visitors seeking miracles. I always left infused with strength to face whatever was coming.
This time, when I entered the chapel, I wasn’t alone. To my left, a young woman with long dark hair silently sat with her legs drawn up and her bare feet on the bench, her shoes placed neatly on the floor in front of her. Her dress didn’t classify her as homeless. Her brow was knotted in worry and her cheeks were wet with tears. She didn’t acknowledge me but kept her eyes fixed on the statue of the Good Shepherd. My own mission seemed insignificant in the presence of her agony.
After a few minutes I left. But not before patting the Good Shepherd’s hand. “Thanks for being there when I needed you,” I whispered.
Now approaching my 20th anniversary I know that a “cancer” diagnosis has forced me to appreciate that there are no guarantees in life. I need to take chances. I don’t see any choice but to dive into my dreams.
As I look back on my life that has been rich and challenging, I remember that young woman and wonder what was so awful in her life at that moment. I hope, like me, she went back to the tiny Chapel of the Good Shepherd, her problems resolved. And before she left, she touched the back of Christ’s hand thanking him for being there when she needed comfort and then got on with her life.
I have been thinking for a long time about the fact that we older nurses are dying off. We will take with us our memories of nursing history. I have always loved to hear from other seasoned nurses about how they size up their nursing careers as they look back. What was important at the time, what were they happy to see disappear, and how do they assess current nursing practice and the future of the profession?
So I decided I would weigh in, occasionally, by spotlighting a nurse of a certain age, i.e., sixty and older, whether this is through an article I have read or by interviewing someone, or through my own stories.
This post is prompted by an article: Diane Saulecke, “There from the Start: A Hospice Nurse Looks Back,” American Journal of Nursing, 7, July 2017, 56-57.
The article features Dianne Puzycki, an 82-year-old nurse, who began to work with the hospice movement when it first started in the early 70s. She still works “the night shift at Connecticut Hospice once a week. ‘I want to be part of it as long as I can,’ she says, ‘It’s become part of my life, my philosophy.’”
After graduating from nursing school in 1955, she started her career at Memorial Hospital (now part of Memorial Sloan Kettering Cancer Center) in New York City. There she cared for patients with cancer, many of them young women.
“At that time, we didn’t talk about death and dying,” she says. “We weren’t allowed to talk about that. It really haunted me for years.”
I remember those restrictions well. The diagnosis of breast cancer was withheld from my beloved Aunt Lena. I was in the first year of nursing school but never visited her in the hospital. One evening, when I was talking to my mother on the phone, I asked, “How is Aunt Lena?” “Just fine,” my mother said. That’s when I knew she had died. My mother would give me the bad new when I next went home to visit.
Puzycki mentions that she heard both Cicely Saunders, a doctor who founded the first hospice, and Elisabeth Kübler-Ross, who opened up discussion on dying through her 1969 book On Death and Dying. The early 70s were heady times in health care as discussion heated up regarding the previous taboo of being honest with patients by telling them their cancer diagnosis.
Kübler-Ross’ book was the subject of a workshop for the medical staff at the time I worked for a community hospital in the early 80s. To this day I remember one of the surgeons storming out of the classroom after loudly protesting, “my patients don’t want to hear that they have cancer.”
Being present for patients and “picking up on the little things” is to Puzycki the key to hospice nursing. And she says that seeing the compassionate actions taken by her colleagues, especially the younger ones, makes her feel hopeful about the future of the profession. She recently saw, for example, a fellow nurse lean down and kiss an elderly patient on the head. “I said, ‘That’s a good hospice nurse.’”
I have been pestering my classmates from nursing school (we are about to celebrate our fiftieth anniversary next month) to write their stories so I can post them on my blog. Maybe pestering is too mild a word. Regardless, I have succeeded. Two women have sent me stories.
The first comes from Joan Moore.
This is her story when she worked for a Hospice in Central New Jersey in the late 1990’s.
THOUGHTFULNESS IN THE FACE OF GRIEF
Written by Joan Moore
One of the most important aspects of hospice nursing is that a nurse is available 24/7 for the patients. This means every nurse on the team is required to take a turn being “on call”.
I’d like to share one of my many on call experiences.
My weekend started quietly. It was a Saturday in October. Halloween. In that neighborhood when Halloween falls on a weekend, the kids…
“Heather Meyerend is a hospice nurse who works in several neighborhoods in South Brooklyn—Sheepshead Bay, Mill Basin, Marine Park, Bensonhurst, Bay Ridge. She usually has between sixteen and twenty patients, and visits each at home once a week, sometimes more. Some patients die within days of her meeting them, but others she gets to know well, over many months. She sees her work as preparing a patient for the voyage he is about to take, and accompanying him partway down the road. She, like most hospice workers, feels that it is a privilege to spend time with the dying, to be allowed into a person’s life and a family’s life when they are at their rawest and most vulnerable, and when they most need help. Some hospice workers believe that working with the dying is the closest you can get on earth to the presence of God.
Heather is not brisk or efficient, as nurses in hospitals are. She is purposely inefficient, in fact. Most of the time when she visits patients, she doesn’t have much to do: she takes vital signs, she checks that there are enough supplies and medications in the house, she asks if old symptoms have gone away or new ones developed. If she were rushing, she could do all that in about five minutes, but her visits usually last an hour or more. Sometimes there is a complicated medical situation to take care of. Sometimes she does something non-medical that needs to be done, which is the hospice way—she might sweep a floor, she might heat up dinner. But, even when there’s nothing else to do, the idea is to be around longer, to chat, to sit close by, to put her hands on the patient’s skin as she goes about her checkup. Her visit may be the high point of the day for the patient, who may not be able to get out of bed, or for whoever is taking care of the patient, who may not have left the house or seen anybody else for a day or two; either or both of them may be going a little crazy and may badly need interruption or variety of any kind, ideally someone different to talk to. So Heather moves slowly; she sits down; she delays; she lingers.” (Italics mine)
Weaving throughout Heather’s story, MacFarquhar gives us the scope of hospice:
“Hospice believes in caring not only for the patient but also for the family, and tries to address psychological and spiritual needs as well as physical ones, providing social workers and bereavement counsellors, music therapists and chaplains, who work together as a team and consult one another frequently.”
And the history of hospice:
“The first modern hospice was founded in 1967, in London, by Cicely Saunders, who was both a doctor and a social worker: she wanted to offer homelike care that aimed to provide comfort and serenity rather than to prolong life. Two years later, Elisabeth Kübler-Ross’s book “On Death and Dying” focussed public attention on the idea of the “good death.” The first American hospice opened in 1974. In those days, hospices were small nonprofits staffed mostly by volunteers; but in the mid-nineteen-eighties Medicare began to cover hospice, and now roughly twice as many people in America die in hospice as die in hospital.”
And an overview of the dying process:
“As the end approached, patients sometimes fell into an agitated delirium in which they saw people from their past appear in front of them as they lay in bed, often people who had died years before. This happened more often than Heather had expected—to about a third of her patients. The spectres appeared sometimes sitting in a chair by the bed, sometimes standing near the door. Often, a dying patient saw his mother or his father in the room, waiting. Sometimes these spectres were welcome: it seemed to the patient as though someone he loved who had gone on before had come back to accompany him to a life after. But other times the spectres were terrifying. Sometimes a patient believed that someone was running after him, out to get him; sometimes he was haunted by someone he had hurt long ago.
When death drew closer, a patient usually began to withdraw, not wanting to see people, and talking less if someone came. He began to sleep more. There was a kind of quieting, a kind of drawing in, as if he needed time to prepare. He might open his eyes for a minute and smile, but then he closed them and returned to wherever he had been. Hearing was the last sense to go. The patient might seem to be asleep or far away, but still he might hear what his family said around him. People tended to whisper around a dying person, so Heather might say to them, Don’t whisper! Talk, play music, he can still hear you.
When death is imminent, the breathing changes, and discoloration begins. The skin under the nails starts to get cyanotic, to turn blue. The legs grow dusky and cool. When Heather sees these signs, she calls family members who aren’t there and tells them, If you want to be here, this is the time. But she has seen, many times, that the patient seems to choose whom he wants there at the moment of death. Sometimes he waits for someone to arrive; but just as often he waits for someone to leave. Heather would see a husband or a wife or a child sit by the bedside day after day, hour after hour, and then he or she would say to the patient, I’m just running out to the market for ten minutes to get lunch, or I’m just going to take a shower, and that would be the time the patient would go. This happened over and over again. She wasn’t sure why. Maybe the dying person wanted to spare his spouse or his child the grief, or maybe it was harder to let go with that particular person around. Maybe dying was just easier to do alone.
If Heather was there when the end was very near, she would ask if the family wanted to gather together in the room. Then she would hang back, leaving the family to say goodbye. If the family were Christian, and if they had talked about that before, she might ask if they wanted to pray together. If the family were not Christian, she didn’t want to impose her beliefs, so she prayed silently in her head: God, here is this person, have mercy on him.”
“The patient’s breathing changes. He might stop breathing altogether for half a minute or so, and then start again. Then he stops again, but for longer. Then starts again, but shallower. This means that death is very close. For a person who hasn’t seen dying before, this strange, unpredictable breathing can be bewildering, a horror: because of the irregular intervals between the breaths, there is no knowing until a while afterward which breath is the last. Just before it happens, there is a staring. The eyes don’t focus anymore. The person is not there behind the eyes. Even so, Heather may need to step forward, after waiting some time, because the family may not know that the patient is dead.”
Impressive how MacFarquhar entertains and educates The New Yorker reader about both hospice and the life of a hospice nurse, topics not usually given such high visibility. It’s the attention to Heather’s interactions with her patients that I so enjoyed reading. You see, I once worked as a hospice admissions nurse. The immediacy of connection with the patient and family could be overwhelming. I never knew what I would find with each new admission—anxiety, fear, apprehension resided in most households. The caregivers, who could be spouses, friends, siblings, adult children, and parents, had to learn about medications, side effects, how to care for the patient, and be prepared for the final outcome, death. It was not a time to rush with instructions. I knew that assessing strengths and shortcomings of the family unit would save problems later on. I loved my job.
One day, the supervisor pulled me aside before I left to see my first patient. In the chill of an empty hallway, she told me I was too slow. Not that I was performing poorly, but that I was too slow.
I knew “too slow” meant that I was costing the organization money. But I also knew I was doing a good job as evidenced by the frequency of hugs I received from the family/caregivers before I left, and the appreciation from the nurses who took over the care of those I had admitted and went out of their way to tell me, “the caregivers are always so well informed.”
It saddened me that management didn’t appreciate my efforts. I didn’t want to work for an organization that valued the bottom line over patient/family satisfaction.
And since I didn’t want to be faster, I quit.
It’s clear MacFarquhar’s did her homework, depicting the specialness of hospice and a nurse who chose to work there. Hospice is not the same as an acute care hospital. The patient and family needs are different and there is no need for hurried nursing care. What is necessary is a nurse who lingers.
A friend deliberated whether she should visit her father for his 95th birthday. She was swamped with commitments. Since he was unaware of his birthday as well of his surroundings and didn’t even recognize his three daughters, there was no urgency to travel to another state.
However, she cleared her schedule and made the trip, as did another sister and a niece. Both lived out-of-state also.
As it turned out, on his birthday, he had a choking episode with difficulty breathing. He stopped eating and died three days later, surrounded by those he loved who otherwise would not have been there had they not come to commemorate the day he was born.
This story reminded me of a patient I cared for back in the early ‘90’s when I worked as a nurse practitioner in a home care program. I had made a first visit to an elderly man…