A palliative care doctor on finding a “good death” for children in the worst situations.
A palliative care doctor on finding a “good death” for children in the worst situations.
by John Beder
If losing a child to an illness is one of the worst things that can happen to a family, Dr. Nadia Tremonti has made it her mission to make it better.
It’s not easy. But as a pediatric palliative care physician, she works to ensure that terminally ill children receive quality end-of-life care. Palliative care is sometimes misunderstood to shorten life expectancy, but it’s a method that increases quality of life, improves symptom burden and decreases medical costs. We follow Dr. Tremonti in the short documentary above as she works to make death less medical and more human. In the process she asks a critical question: When a child is terminally ill, how can we make the end of life a better one?
Once, a patient with chronic pain due to an immunodeficiency made an appointment with me to say goodbye. For years, he had received intravenous therapies for his infections, but they had all stopped working. His other doctors had already told him that nothing more could be done, and he had little time left to live. He came to let me know that he appreciated what we had done for him.
It was a surreal moment. The young man wasn’t in agony, and he seemed to be at peace with the inevitability of his death. However, I was caught unprepared. Since I wasn’t sure how to respond, I simply acknowledged his words with a “thank you.” We shook hands and he departed. That was the last time I saw him.
Last week, a colleague of mine sent out an email to a small number of his professional associates. He told us that he is very ill. Clearly, his implicit message was that he might never see us again.
As I reflected on his message, I felt unprepared again. I wondered how I should respond. How would I say goodbye? Should I even broach the topic? This might be my only chance to let him know that I’d always considered him a mentor. But would he become despondent if I appeared to eulogize him? Would it be hurtful to express my sadness that we might never speak again?
I certainly didn’t want to add to his suffering. Perhaps I should ignore the gravity of his illness and focus on how I hoped he would recover soon.
But that would be dishonest. He is a physician, too, and always modeled treating his patients with empathy and compassion This was the part of his character that I felt most drawn to. He is a doctor who healed as much by listening to his patients than by any other therapy.
Asking the Right Questions
I decided to tell my friend what an important role model he has been for me, but I also had a question for him. Having treated many terminally ill patients, I have learned that most people who are dying have hopes for themselves, as well as the loved ones they are leaving behind. Therefore, I asked my physician friend whether he had any hopes he wanted to share with me. He told me he had two wishes.
“As I have been reflecting upon my personal and professional life, my first hope is that my presence really made a positive difference in people’s lives. That would be my legacy. The outpouring of affection, goodwill and positive comments that I have received from ex-patients, friends, family and colleagues has made it clear that I have succeeded in that,” he said.
My friend also expressed his hope for a change in our political situation. He mentioned the anger, frustration and hopelessness he feels watching American society fall into two warring ideological camps. His hope is that the young people of today will lead us into a better future.
Opportunities for Closure
COVID-19 has forced me to think about the reality that death can catch any of us by surprise.
As I write this, we are in the midst of a pandemic that has infected more than 17 million people and taken more than 680,000 lives worldwide. Many of the COVID-19 victims died alone and didn’t get a chance to say goodbye to their loved ones.
Even in ordinary times, most of us don’t get to say goodbye. We often deny the reality of death as life draws to a close. “You’ll feel better soon,” we say, either to make ourselves feel better or to avoid the topic. Even when we are allowed to be at the bedside of someone who is dying, we often lack the courage to convey our true feelings. Honesty can be too painful during those moments.
I remember saying goodbye to my dying father. Lying with him on his bed in his home, I asked my father if he was afraid. Many of us refrain from expressing grief at moments like that, because we worry that we might make the dying person feel worse. But I could not keep from crying.
In The Four Things That Matter Most, author Ira Byock, MD, identifies the messages he considers most important to communicate to loved ones near the end of life: “Please forgive me. I forgive you. Thank you. I love you.” Expressing these sentiments can help create a sense of mutual peace and completion.
Saying goodbye does not wish death on anyone. It acknowledges the richness of the relationship that has been. That is what I felt when I told my dad I loved him, which at the time was my way of saying goodbye. It is also how I felt when I brought closure to the relationship with my friend who emailed me.
Congressman John Lewis, the noted civil rights leader, expressed hope for the future in a New York Times op-ed published shortly after his July 17th death. He said, “Though I am gone, I urge you to answer the highest calling of your heart and stand up for what you truly believe.”
Perhaps we should consider following Lewis’s example. By daring to acknowledge what is happening and to say goodbye, we are bravely addressing the highest calling of our hearts. We also have the opportunity to honor all those who touched us and made us who we are.
It is hard to know how much my patient, caught in an eternal childhood, understood about his cancer.
By A. Sekeres, M.D.
When I first met my patient, three years ago, he was about my age chronologically, but caught in an eternal childhood intellectually.
It may have been something he was born with, or an injury at birth that deprived his brain of oxygen for too long — I could never find out. But the man staring at me from the hospital bed would have been an apt playmate for my young son back home.
“How are you doing today, sir?” he asked as soon as I walked into his room. He was in his hospital gown, had thick glasses, and wore a necklace with a silver pendant around his neck. So polite. His mother, who sat by his bedside in a chair and had cared for him for almost half a century, had raised him alone, and raised him right.
We had just confirmed he had cancer and needed to start treatment urgently. I tried to assess what he understood about his diagnosis.
“Do you know why you’re here?” I asked him.
He smiled broadly, looking around the room. “Because I’m sick,” he answered. Of course. People go to hospitals when they’re ill.
I smiled back at him. “That’s absolutely right. Do you have any idea what sickness you have?”
Uncertainty descended over his face and he glanced quickly over to his mother.
“We were told he has leukemia,” she said. She held a pen that was poised over a lined notebook on which she had already written the word leukemia at the top of the page; I would see that notebook fill with questions and answers over the subsequent times they would visit the clinic. “What exactly is that?” she asked.
I described how leukemia arose and commandeered the factory of the bone marrow that makes the blood’s components for its own sinister purposes, devastating the blood counts, and how we would try to rein it in with chemotherapy.
“The chemotherapy kills the bad cells, but also unfortunately the good cells in the bone marrow, too, so we’ll need to support you through the treatment with red blood cell and platelet transfusions,” I told them both. I wasn’t sure how much of our conversation my patient grasped, but he recognized that his mother and I were having a serious conversation about his health and stayed respectfully quiet, even when I asked him if he had questions.
His mother shook her head. “That won’t work. We’re Jehovah’s Witnesses and can’t accept blood.”
As I’ve written about previously, members of this religious group believe it is wrong to receive the blood of another human being, and that doing so violates God’s law, even if it is potentially lifesaving. We compromised on a lower-dose treatment that was less likely to necessitate supportive transfusions, but also less likely than standard chemotherapy to be effective.
“Is that OK with you?” my patient’s mother asked him. I liked how she included him in the decision-making, regardless of what he could comprehend.
“Sounds good to me!” He gave us both a wide smile.
We started the weeklong lower-dose treatment. And as luck would have it, or science, or perhaps it was divine intervention, the therapy worked, his blood counts normalized, and the leukemia evaporated.
I saw him monthly in my outpatient clinic as we continued his therapy, one week out of every month. He delighted in recounting a bus trip he took with his church, or his latest art trouvé from a flea market — necklaces with glass or metal pendants; copper bracelets; the occasional bolo tie.
“I bought three of these for five dollars,” my patient confided to me, proud of the shrewdness of his wheeling and dealing.
And each time I walked into the exam room to see him, he started our conversation by politely asking, “How’s your family doing? They doing OK?”
Over two years passed before the leukemia returned. We tried the only other therapy that might work without leveling his blood counts, this one targeting a genetic abnormality in his leukemia cells. But the leukemia raged back, shrugging off the fancy new drug as his platelets, which we couldn’t replace, continued to drop precipitously:
Half normal.
One-quarter normal.
One-10th normal.
One-20th normal.
He was going to die. I met with my patient and his mother and, to prepare, asked them about what kind of aggressive measures they might want at the end of life. With the backdrop of Covid-19 forcing us all to wear masks, it was hard to interpret their reactions to my questions. It also added to our general sense of helplessness to stop a merciless disease.
Would he want to be placed on a breathing machine?
“What do you think?” his mother asked him. He looked hesitantly at me and at her.
“That would be OK,” he answered.
What about chest compressions for a cardiac arrest?
Again his mother deferred to him. He shrugged his shoulders, unsure.
I turned to my patient’s mother, trying to engage her to help with these decisions. “I worry that he may not realize what stage the cancer has reached, and want to avoid his being treated aggressively as he gets sicker,” I began. “Maybe we could even keep him out of the hospital entirely and allow him to stay home, when there’s little chance …” My voice trailed off.
Her eyes above her mask locked with mine and turned serious. “We’re aware. But we’re not going to deprive him of hope at the end …” This time her voice trailed off, and she swallowed hard.
I nodded and turned back to my patient. “How do you think things are going with your leukemia?”
His mask crinkled as he smiled underneath it. “I think they’re going good!”
A few days later, my patient developed a headache, along with nausea and dizziness. His mother called 911 and he was rushed to the hospital, where he was found to have an intracranial hemorrhage, a result of the low platelets. He slipped into a coma and was placed on a ventilator, and died soon afterward, alone because of the limitations on visitors to the hospital during the pandemic.
At the end, he didn’t suffer much. And as a parent, I can’t say for certain that I would have the strength to care for a dying child at home.
So far, I’m healthy, thank Pan, for a man my age, and except for a few non-life-threatening annoyances of long years’ use, my body seems to be holding up OK, and I’m grateful for what luck I’ve had. But I know that could change any minute. The stranger’s cough in some store, the contaminated fingerprint on the copier, the idiot with his nose outside his mask, who knows, you could get infected almost anywhere, via all sorts of sneaky vectors, and there really is no safe place.
So it’s a good time to think about contingencies, just in case. And the most inevitable and uncertain roll of the dice is death. If you catch COVID-19, it’s a long shot that it will kill you—unless of course you’re old, or fat, or already sick with something, or possibly young and otherwise healthy, nobody’s really sure why it takes some people—but this seems to me as good a time as any to get ready to die.
One thing I’ve always loved about gospel music is its existential urgency: You’re going to die and you’d better be ready to meet your Maker. If you believe in sin, you’ve sinned and it’s time to atone. You wish you could apologize to whomever you’ve hurt. And if you go down that road of remorse you’re in danger of being drawn into a black hole of a past you’ll never escape from. But maybe there’s a way to exorcise those bad deeds, some ritual—confession or spirit dance or primal scream—that can cleanse your soul of the shame.
Or you can forgive yourself for being human and screwing up repeatedly as nearly everyone does. You can accept your imperfections in whatever time is left, and maybe there’s time to correct them in your behavior and in relations with others. Maybe it’s not too late to change for the better.
There’s nothing like a deadline as a motivator, and the ultimate deadline is the greatest motivator of all because there is no grace period or overtime or extra innings. Death is a dead end. So you’d better get it together before it’s a done deal.
Thinking you could die any day brings your surroundings into sharper focus. More and more I appreciate the small pleasures—the sight of pelicans, smell of jasmine, sound of a song in the car, tactile feel of addressing an envelope and selecting the perfect stamp for the recipient, taste of the pasta sauce made from ingredients bought at the farmers market, friendly twinkle in the eye of the farmer as she hands you your change and you exchange masked thank-yous—and I seem to find them everywhere now that I’m about to be bereft of everything. When you’re about to lose it all, you realize what a gift it has all been.
So from imminent loss of everything comes a suddenly discovered abundance of what could never be kept anyway. As W.S. Merwin put it: “What you do not have you find everywhere.” Or Gary Young, my old friend who barely survived cancer in his 20s: “I’ve never felt more alive than when I was dying.” According to one biographer, the last words of Jorge Luis Borges were: “This is the happiest day of my life.” Or Page Smith in his final minutes: “It’s been a great life.”
These expressions of appreciation, of gratitude, of relief from all the suffering and distractions, remind me of how I’d like to live the rest of my days, no matter how much or how little time I have left. I don’t know whether time can be “wasted”—but I want to make the best possible use of it while I have the chance. That means not clicking on every link or trying to be liked or aspiring to other people’s expectations. Being ready to die means being ready to tell the truth. Any words you say could be your last.
I grew up around dead bodies. In fact, some of my earliest childhood memories are of dead bodies in caskets, and I mean dozens of corpses — not the occasional family friend or relative. The reason I saw so many dead people was because my father was a funeral director for thirty-five years in Midwest America.
Fast-forward now through some strange twists of fate, and I am currently the Director of the Centre for Death and Society at the University of Bath, the world’s only interdisciplinary research centre focused on death, dying, and the dead body. Human mortality looms so large in my upbringing and academic career that my younger sister, Julie, is on the record calling me the Overlord of Death.
As a result of these labours, I published a book called Technologies of the Human Corpse in which I cover the history and meaning we living humans assign to dead bodies by using different kinds of technologies: embalming, photography, rail transport, science museums, detention camps, radical life extension, the list goes on.
I have spent many years trying to understand what the bodies of the dead can teach us about the living, and here are some of the lessons I have learnt.
Dead bodies prove a once-living person died
When you see a dead body, you see causation. Some set of events or actions caused that dead body to be in front of you. Dead bodies do not just happen and require either an internal or external force (sometimes both!) to appear. Place a dead body in any situation and that situation automatically becomes far more serious.
One of the great 17th Century human inventions was the autopsy (literally ‘seeing for oneself ’), which stressed peering into the dead body to understand causes of death. The autopsy’s historical success is also one of the reasons we 21st Century humans find it so distressing when a cause of death cannot be determined.
How is an indeterminate cause of death possible, many people ask, with all our advanced bio-medical technology? And it is on this very ship 1,000 different CSI television programmes sailed…
But set aside the impossible forensics portrayed on popular television programmes for one minute, since we are living in a historical moment dominated by very real dead bodies with clearly defined causation.
Dead bodies from COVID-19. Dead bodies from police violence. Dead bodies from lack of access to necessary medical care. Dead bodies from interconnected social inequality that accelerates death, which leads me to lesson number two.
Dead bodies teach us about politics
Human corpses invisibly surround we the living on a daily basis, so much so that under normal conditions approximately 1,700 people die each day across the UK.
But there are moments when disease and political protest suddenly make these dead bodies far more visible. The current visibility of dead bodies due to COVID-19 and the global protests around George Floyd’s death in Minneapolis are examples when human corpses become a catalyst for action.
Whether it is the over 550,000 COVID-19 deaths from across the globe or the singular dead body of one black man in Minneapolis – these human corpses create new political meanings when answering some fundamental questions: why is this person dead and what political dynamics led to the death?
In many ways we have seen aspects of the current COVID-19 dead body politics before. In chapter 3 of my book I focus on HIV/AIDS corpses and the postmortem political changes produced by that pandemic.
So, for example, a key question during the height of the AIDS epidemic was whether or not it was safe to touch the body of a person killed by the HIV virus. It was safe, but it took many years for that answer to arrive.
Historical examples of dead body politics and race also abound. George Floyd’s death is part of a much broader US context captured in the book Without Sanctuary: Lynching Photography in America (2000) that documents how white Americans collected photographs of lynched black people and turned those images into collectible postcards. I highly recommend this book to any white person wondering why so many black communities feel such rage and anger about their dead.
We don’t always see the dead bodies until suddenly we do and then it is difficult to look away… until we do
I describe lesson three as part of a National Death Infrastructure into which dead bodies are absorbed by any nation’s very local but also quite global system for managing human corpses.
Any National Death Infrastructure includes systems such as local cemeteries and city morgues alongside international air transfer companies handling postmortem repatriations. It is when those systems overload that we begin to see the dead bodies and cannot stop seeing them since there are simply too many corpses to store. The dead bodies must be moved somewhere.
The recent COVID-19 experiences in many cities, New York and London in particular, demonstrate how pandemics can produce mass fatality events that quickly overload the everyday death infrastructure and create the need for rapid adaptation. In these moments of emergent adaptation, we begin to see how quickly the dead really do impact the world of the living.
But many of us do eventually look away and forget about the dead bodies. In the not-to-distant-future, I have a feeling that the dead bodies created by COVID-19 will be forgotten about, especially by the people who did not lose someone close to them.
Here is a quick test – how many people have died from AIDS? The answer is 38 million and counting. That is an enormous number of largely invisible dead bodies.
Dead bodies teach us not to hide the dead bodies
Virological determinism is the concept I use to describe the current US and UK response to the COVID-19 pandemic, that is, we humans blame the virus for creating all the COVID-19 dead bodies as opposed to recognising human failures (and here I mean government leaders as much as anything) at mitigating the contagion.
This is similar to the way we use technological determinism to explain human problems by saying, “…the computer did it!” as opposed to accepting responsibility for our own actions.
COVID-19 created a whole new linguistic dynamic for 2020’s human catastrophes – blame the virus. Name a problem and the coronavirus caused it. And while this is correct in some instances, the virological determinist rationalisation only goes so far with dead bodies.
The sudden surge in COVID-19 dead bodies that overloaded National Death Infrastructures everywhere meant hiding the bodies was not possible. Most countries face a real dilemma right now with care homes since the number of dead cannot be easily glossed over.
Governments may try (and some will surely succeed) but here is a key rule: one dead body makes any given situation a tragedy. Twenty-thousand dead bodies make the same situation a mass fatality catastrophe.
Any government that attempts to hide these dead bodies, and here ‘hiding’ can also mean ‘not acknowledging,’ faces an immediate problem – all attempts at obfuscating the dead will only make their loved ones and advocates work even harder to name the deceased.
There is a parallel here, too, with the George Floyd case. The video recording of his death resonated so deeply because it showed his death in clear-cut terms that meant nothing was going to hide his dead body from public view.
Finally….
Dead bodies teach us about grief and bereavement
I opened these five-lessons with my younger sister Julie calling me the Overlord of Death. Julie died on 29 July 2018 from brain cancer and I wrote at length about her death in the preface to my book. She died in Italy (where she lived), and took her final turn while I boarded a Milan-bound plane at Bristol Airport.
When I arrived at the hospice where she died I immediately asked to see my sister and was taken to her body. I spent a long time talking with Julie about how much everyone loved her and how much everyone would miss her.
I also suddenly found myself next to a dead body, similar in so many ways to my youth, but this time it was my sister. And sitting next to her dead body taught me what loss truly felt like, since I couldn’t just call my sister on the phone and tell her what was happening.
She was dead but that experience with her in the hospice meant that Julie would forevermore remain an active presence in my everyday life. And she is.
One year ago on this date, July 11, 2019, my wife, Norma, was freed from the prison of Alzheimer’s disease. So exactly one year later it is appropriate to celebrate Norma Houghton’s life and share with my readers personal reflections on my recovery.
You who have been with me all the way from diagnosis in 2010 to last summers’ final breath know the documented story of a lady who gave an extraordinary gift to sacrifice her privacy to help others. The sadness in over 10 years of seeing her drift away was softened by the concern of many readers, as well as numerous caregivers.
My restoration and renewal following our 57 years of marriage has been facilitated in part by periodic messages this past year from her hospice caregivers from Compassus. A healing journey of recurring memories was predicted by their periodic communication.
Norma’s good works have been recognized with the Norma A. Houghton Staff Award in the Birthing Center of Monadnock Community Hospital and an annual scholarship for a graduating student from one of our three local high schools choosing higher education in nursing.
As past co-chair of the Western New Hampshire Walk to End Alzheimer’s, I have been given the satisfying task of using my wife’s story as a monthly “mission moment” to cheer on the current walk committee through the challenges of planning a major event during the pandemic.
So her legacy lives on and, though grief has come to my life, spiritual growth and a new life have also emerged as predicted and aided by Compassus. I can now see that hospice is not about dying but helping caregivers and patients live life to the fullest.
When our time on Earth comes near a close, the choice of hospice provides a better quality of life than if aggressive end-of-life medical care were applied. Dr. Gawande’s classic treatise, “Being Mortal,” about “medicine and what matters in the end,” is on point.
You may remember an early column about full body donation for medical education. I expect next week to travel to Boston University Medical School to bring Norma’s ashes back to Jaffrey. Plans are being laid at the United Church to develop a memorial garden as a final resting place for beloved members of the church.
If you want to find out more about hospice services, visit the hospice and palliative care organization (www.nhpco.org). It is not true that hospice is only for the final days or hours of life. Hospice is about helping patients and their families have the best possible quality of life as they can when life expectancy is limited.
Usually a patient’s doctor and the hospice medical director work together to offer experience with hospice criteria, guidelines and clinical judgements. Hospice Medicare coverage includes nurses, other caregivers, medicines, supplies and equipment, with little or no cost to patients, families or caregivers.
Clearly for me hospice care provided even more than medical, emotional, social and spiritual support. I find myself surrounded with family and friends who share my loving memories of Norma and continue to offer peace and support as I come to this special date.
Compassus gave me positive relief and strength during a time of extended grief, allowing me to create appropriate remembrances and lasting reminders of a life well lived. Since they suggested a celebration on the anniversary of my loved one’s death, isn’t it a joy that my July column is published as a tribute on this very date!
“Enjoy life. Have fun. Be kind. Have worth. Have friends. Be honest.
“Laugh. Die with dignity. Make the most of it. It’s all we’ve got!”
When the coronavirus came to Boston, doctors at Brigham and Women’s Hospital noticed how silent certain floors became. Any patients who could be discharged were discharged. Anyone who could stay away stayed away. “The hospital had this eerie quiet,” says Jane deLima Thomas, the director of palliative care at Brigham and Women’s Hospital and Dana-Farber Cancer Institute. But in the intensive-care units set up for COVID-19, machines beeped and whirred in room after room of the sickest patients. Those patients were sedated, intubated, and isolated. Many of them would die.
Palliative care is about providing comfort—physical and emotional—to patients who are seriously ill, including those who may be close to death. Before the pandemic, deLima Thomas’s team worked with patients with kidney disease or cancer or heart failure, but this spring, they all switched to COVID-19. They embedded themselves in the ICUs. Palliative care is a field especially invested in the power of a hug, a steadying hand, and a smile. In other words, palliative care is made especially difficult by a virus that spreads through human contact.
The first day the palliative-care doctors walked into the ICUs, Thomas says, “we felt like tourists.” They were dressed in business casual, while their ICU colleagues raced around in scrubs and masks. But the palliative-care team—which includes physicians, nurses, chaplains, and social workers—found ways to integrate themselves. In the early days of the pandemic, when protective gear was scarce, no visitors were allowed. Palliative caregivers, along with ICU nurses, held iPads cocooned in plastic bags so families could say goodbye on Zoom. They were sometimes the only one in the room when a patient died, otherwise alone. I interviewed several members of the Boston-based palliative-care team, and their stories, which have been condensed and edited for clarity, are below.
Samantha Gelfand, Fellow
In the ICU, the most immediate thing is the personal experience of walking down the hall. Nearly every patient’s room, the door is closed, and the patient is alone. And they’re often on their bellies for prone positioning. You can’t even see their faces often.
Seeing anyone who is critically ill with a breathing tube, lots of monitors and beeping, it’s not easy. When we facilitate Zoom calls with family, I say, “Listen, it may be alarming to see that your loved one has tubes and tape and monitors on their head.” They may have soft wrist guards on their arms to stop them from trying to take out their own tubes.
It doesn’t always work. I did a Zoom call with seven family members. The patient was a man in his 50s and he had seven kids, and they ranged from 18 to late 20s. I told the siblings what I could to prepare them, and still I’m holding the iPad and they start wailing. There’s a visceral experience of just devastation.
As someone’s who lost my own parent, I think wailing is appropriate. I let them. I actually think holding the silence and bearing witness is the right thing to do first. It’s very uncomfortable to watch, but I think it’s misguided to try to hush or try to shorten it. How do you comfort someone on Zoom? It sucks.
Our department has a reflection conference on Tuesday mornings. In COVID-19 times, we’re still doing this, but now we’re doing it by Zoom. One clinician will read the names of patients who died last week in our care. It’s very, very eerie to hear the list of names and have worked with probably half of them and not have seen their faces.
Usually when we sit in that room and we remember the dead, we are remembering what it felt like to talk to them, what they looked like. And this, it’s like we’re remembering what it felt like to think about the patient or what their family members’ voices sound like. I really missed the times when I could think of a face the patient made or a comment that they said. It feels like a new way of grieving.
Ricky Leiter, Attending Physician
COVID-19 doesn’t just affect individuals. It’s affecting families. I’ve had a couple cases where a married couple is in the ICU, next to each other. I was talking to a daughter whose parents were both intubated in the ICU. They were in their 70s to late 80s. Her father wasn’t doing well, and we were asking, “Should we try to resuscitate?”
I remember her saying, “I can’t think about the hard stuff right now. This is all too much right now. I can’t do that.” And of course she couldn’t. How could she? Her parents were relatively healthy before they came in. It was the suddenness of all this. In my normal palliative-care practice, those are patients who have been sick for a while. They have been diagnosed with a serious and life-limiting illness. A lot of COVID-19 patients are otherwise pretty healthy; maybe they have high blood pressure. This is an entirely new universe.
One of our fellows did five or six tough conversations like this with families in one day. I had a day like that early on. Our team walked back to our office, and everyone there asked what happened to us. We were so shell-shocked, and it felt like we were having the same conversations over and over. I don’t normally have six conversations where it’s the same disease, the same coronavirus.
Reverend John Kearns, Chaplain
My brother died 30 years ago this September. It was a life-changing experience and really oriented me into the life of loss and grief. He died of AIDS, which seems so similar now with the fears surrounding an illness that wasn’t well understood. People then were afraid to touch him or hug him. My parents were very dedicated to his care. He died at home in our bedroom that we shared as brothers.
It’s natural for people to take care of their loved one when someone’s sick. Being present for someone is part of what helps people get through it. They’re participating in some way. During this, the families have none of that participating. The first few weeks of COVID-19, we didn’t go inside the patients’ rooms. Now that we have more protective gear, they’ll let us go in, and the department has developed an iPad ministry to connect patients with family who can’t be at the bedside. Sometimes the family will email photographs and we’ll print them out and hang them in the room—photographs of the patients’ kids, wife, spouse, partner. Whether these sedated patients can see or hear is questionable, but the family gets to see, or the family gets to speak to them.
I’ve spent as much as two hours in a patient’s room. I’ve gently wiped the forehead of a patient. I’ve led prayers with the family over the patient. And they will ask us to hold their loved one’s hand. Often there’s a hope to see there’s a response, whether it’s a simple squeeze of a hand, a blink, the movement of the head—anything that gives them hope that their loved one is going to make it.
When the family wants to be seen by the patient, then you have to do the reverse camera and then hold it in such a way that they can see the patient’s face. You’re trying to orchestrate this intimate moment and sacred moment, and you’re fumbling with this iPad. Where is the camera lens on these things? And at first, we were putting these iPads in plastic bags, like a Ziploc bag, to keep it from getting germs on it. So now it’s sliding around in this bag that’s a little too big. You also have the problem of fogging up your glasses and fogging up the shield. At times, it is hard to see the face of the person or to read something or to manipulate the iPad.
There was a Muslim patient who was dying. We have a couple imams. One is actually out of the country; he has not been able to get home since COVID-19 started. The other imam wasn’t available. When the patient took a bad turn, I got called in by Ricky Leiter. As an interfaith chaplain, we also visit everyone. I had an iPad with 20 or so family members who were all over the globe. They were reciting prayers. At one point it reminded me of church bells. All those voices all over the world, coming together at the same time.
Stephanie Brook Kiser, Fellow
I’ve had family members say to me, Just please go in person and tell them in person that I love them and promise me that they won’t die alone, that you’ll be there at the bedside.
A patient I took care had been sick with COVID-19 and in the hospital for two or three weeks. He was 80 years old. His wife was just a few years younger. They had been together since they were teenagers. You can just tell in her voice that it was so hard for her to be apart from him. She said, “I can’t remember a time I’ve been apart from him for this long. I think this might be the first time since I’ve known him.” At the same time, she was living in fear in her home because she knew she had been exposed to him. Because of her age and other medical problems, she was at high risk to be at the same place he was: really sick in the ICU, with a breathing tube, not getting better at two weeks or three weeks.
It was pretty clear medically, no matter what we were doing, he was continuing to get worse and worse and worse. We had a really difficult conversation over the phone about what his wishes would be, and it was clear to her and to their children that the biggest thing we could do was transition to focus on his comfort. We knew what that would mean is he would die pretty quickly.<
With the hospitals’ changing policy, if someone is actively dying, we can now allow for a family member too at the bedside. My experience in the ICU when that’s offered, more times than not family members actually say no, that they don’t actually want to come to the ICU. There’s a real infectious risk to them, and I’ve had a lot of family members say, “I don’t know that I want to see them again the way they are now. I want to remember them the way they were before.” The wife was in such distress and despair over the idea that she was so physically close in Boston but it wasn’t the right decision for her to come into the hospital. I spent a lot of time and I was even grasping at things: Can I arrange a Zoom call? Maybe I can record a video and send it to you guys? And the family was saying, We want to remember him in a different way.
They said, We just want you to go to his bedside and hold his hand so that he knows he’s not alone. And I did that over the course of about 15 minutes. He died pretty quickly.
I’ve been part of a lot of deaths of patients in palliative care. We don’t see a lot of death like this—without any family members present. We aren’t used to being that person at the bedside, trying our best to provide the comfort that a family member’s presence would provide and feeling inadequate in that at best. Afterwards I gathered his nurses and respiratory therapist and we talked. Everyone agreed it was unlike anything they had been part of.
It was the first time I had touched him. And in the ICU, probably one of the only times I’ve physically touched the patient.
Natasha Lever, Palliative-Care Nurse
I’ve been a nurse practitioner for seven years, and I was hired at Brigham to do heart-failure and palliative care. Literally the week after I started, COVID-19 happened. They had this whole very carefully planned out 12-week orientation, and I got a phone call from our director, Jane, and she said, “Either we’re going to keep you at home for the next few months or we’re just going to put you in the ICU.” I kind of got thrown into the deep end.
I went into nursing because I love to be at the bedside and with patients. Not having families and loved ones at the bedside was probably the most difficult part of all of this. It felt so wrong to us that families were having to make decisions about withdrawing care when they haven’t seen their loved ones.
I remember the one that hit me the most was a woman whose son had given her COVID-19. He had been quite ill himself, and he had recovered. The immense guilt that he felt was so profound. He kept saying—he’d obviously been watching the news—“Please, don’t throw her in a body bag if she dies.” He kept talking about how they had been so excited they were going to move into a house together and he was going to buy his first house. He had plans for her and just wanted her home so badly. She passed away and it was very difficult.
That was one of my first cases. And this was week two of my job as a palliative-care practitioner.
I remember the first day I was in the ICU, it was completely chaos. It was very loud, lots of people. Almost this adrenaline rush you felt. A couple of weeks in, things sort of settled down. Now the ICU numbers are down. I had a really strange feeling when they were closing down the COVID-19 ICUs. I walked down the hallway and it was dark and all the rooms were empty and clean and there was no one there. Two weeks ago, this was one of the most busy, chaotic places in the hospital and there was just this silence. No alarms, and no people. It was almost as though, Is this a dream, did that really happen?
Now I have just started doing the orientation that I was supposed to be doing. I’m going back to the hospital. I’m extremely excited to be at the bedside. I have never been so excited to talk to a patient in real life.
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