Grief Connects Us

by Joseph D. Stern

  After my initial fear at being exposed to COVID-19, I went into the COVID-ICU to see how my patient was doing. I have to admit I was extremely frightened. I didn’t know what I would find there. As I stood outside the locked doors to the ICU and hit the button to activate the intercom and camera, I wasn’t sure what to expect. A young nurse came to the door and escorted me in. Another nurse showed me how to don PPE. I was already wearing an N95 mask with a Level 1 mask over the top of it. I gelled my hands, then put on a plastic gown, gloves, and a face shield over my glasses. I gelled the outside of my gloves, then slid open the door to the patient’s room, past the IV pumps parked in front of her door, within easy reach of the medical team, so that they could be accessed remotely. Her nurse accompanied me into the room. We slid the door closed behind us.

  My patient was sitting up in bed. She was awake and answered my questions. She had no recollection of what had happened to her or of how close she had come to dying. Her pupil had come back down to normal size, although her eyelid continued to droop, but she was moving her arms and legs well with no signs of paralysis. I removed the drain I placed in her head at the time of her surgery and sealed the hole in her scalp with some staples. This would allow her to get up and walk with the physical therapists.

  We threw the drain and stapler into a trash receptacle, gelled our hands again, then carefully removed the PPE and disposed of the gown and gloves in the trash, while keeping the facemask and N95 mask to be sterilized for reuse.

  My patient continued to recover and soon after, she was discharged home, to continue her convalescence with her husband. Further questioning revealed that he had likely had COVID-19 before his wife and was now fully recovered. He was an essential manufacturing worker who was helping produce personal care items during the pandemic. We planned for her to come back to the office to have her staples removed in a month. This would allow her time to recover and hopefully to no longer be infectious. Not only did she not die as I initially feared, she went on to make a full recovery.

  She came back to my office with her husband several weeks after her surgery. COVID had caused her to develop a coagulopathy (her blood became too thin) and she had spontaneously hemorrhaged, developing a near-fatal subdural hematoma (blood on the outside of her brain). By the time she returned, she had recovered from her COVID infection. Her blood-clotting disorder had also resolved and she had no lingering impairment from her near fatal hemorrhage. Her husband sat with her and filled in the details of her illness, since before that moment, I had only spoken with him on the phone and had never met him in person.

  My patient is a lovely person who had worked as a high school guidance counselor for the last thirty years. The couple were extraordinarily grateful for the care they had received and I took a photograph of her with her thumbs up, seated next to her husband, both in facemasks. I sent the photo to the ER team and pharmacist who initially saved her life, to the Neuro-ICU team, to the OR team, to the COVID-ICU team, and to the CEO and CMO of the hospital. They had all played a vital role in saving this woman’s life. We all worked together on her behalf. Each of us understood the risks inherent in our jobs and did them anyway. A husband and wife, who seemed to me to be very much in love, narrowly avoided a horrific loss and will survive intact.

  The staff in the COVID-ICU was inspiring. They all volunteered to work there, accepting the risks of exposure. They were kind to each other and to their patients. They were reassuring to me, as they watched me don and doff the PPE and supervised my every movement to make sure I didn’t breach any of the protocols designed to protect us from inadvertent exposure to the virus. The doctors and nurses were brave. They were calm and deliberate. The entire unit was suffused with a spirit of compassion. The very things I have been advocating for in this book were on display. There was a shared sense of purpose, a feeling of resolute determination, and no longer a disconnection between patients and their caregivers. They were all on the same page, all fighting and afraid of the same thing, each at risk of infection, and of dying.

  For everyone’s safety, family members were excluded from the ICU. But rather than fostering indifference, this seemed to engender greater consideration. The staff went out of their way to connect patients and their family members. They reported changes in condition and regularly updated concerned family members. My patient’s nurse went back into her room after I left to help her FaceTime her husband. While I went in with trepidation, I left inspired by and proud of my fellow healthcare workers.

  That same evening, my neighbors gathered in the street to say thanks to “the COVID-19 warriors.” They banged pots, tapped bottles, sang, and beat makeshift drums made from trashcans. They were celebrating the sacrifices made, and the risks taken, by the healthcare workers who went toward, rather than away from, danger.

  This common purpose, shared vulnerability, and tremendous courage in the face of danger has been seen the world over. Medical personnel have volunteered and gone to New York to help at the heart of the pandemic, risking their own lives and, less directly, the lives of their families. They have done the same in Italy. What I saw frightened me, yet this pales in comparison to what healthcare workers have had to face in the Bronx or other besieged communities. There has been a general, and heartwarming, willingness to face personal danger for a greater good. Since there is no available treatment or cure for the virus, the willingness to face the pandemic head-on exposes practitioners directly to dangers they can try to minimize but can in no way control. The threat is very real; witness the number of healthcare workers who have died from the coronavirus.

  Unlike with my sister or Pat’s diagnoses and treatment, everyone who comes in contact with the virus faces, with the caveat of comorbidities, the same relative risk. Yes, the healthcare workers understand details of patient care that the general population doesn’t possess. That is why they are useful. But, in reality, this affords them little to no protection from harm. The distinction between patient and doctor is less clear. They now have shared vulnerability and risk. The knowledge and power differentials have been flattened. A willingness to go into harm’s way is, at its core, an act of compassion.

  The backdrop of political anti-lockdown protests, claims of “hoax,” and rejection of science and public health measures are a distraction from what I have witnessed in caring for patients during the pandemic. The greater message has been one of humanity and compassion, of people supporting each other, and of coming together. We have experienced an event of far-reaching historical significance collectively. Most of us, particularly those of us in healthcare, have dug into ourselves and risen to the occasion, going beyond our comfort zones to help others in need. My neighbor, a retired periodontist, volunteered on a farm to help harvest crops and then took them to a food bank to distribute to the hungry. A local restauranteur, Reto Biaggi, in an effort to keep his business afloat but also to spread goodwill, kindness, and support within his community, has been providing takeaway meals at inexpensive prices for anyone who places an order. He and his staff are using scrupulous technique and food handling, with masks and gloves. They bring the sealed meals out to the customer’s car and are giving away desserts to healthcare workers as a way of expressing their thanks.

  These approaches are relevant to the message I have been trying to relay throughout this book. Some have adopted a defended, self-preserving posture, while others have recognized that a radically new situation demands innovative approaches. These have required us to apply adaptability, resilience, courage, compassion, and love. How we confront external threats is not dissimilar to how we must face the disruption of a difficult disease diagnosis or the mortal illness of a family member. Once this has occurred, things are forever different. We can use the skills we have at our disposal to adjust to this new reality, but we can’t wish it away or pretend it isn’t happening. Will we be flexible and adaptive, or dig our heels in and refuse to budge? Will we cling to old truths and deny new realities out of fear or will we admit what we don’
t know and can’t control and embrace this fear and uncertainty as a necessary fact of our lives? Will we see each other for who we are or dwell in shadows and projections of our own making?

  My experience with my patient with COVID-19 and the subdural hemorrhage is not unlike the experiences I had with my sister and her husband, in that it forced me out of my normal level of comfort and familiarity into a challenging situation, which caused me fear and stress. My willingness to face these challenges was emblematic of the emotional agility I am advocating that we embrace: I was forced to confront my fear without retreating from it, to summon courage and go into the COVID-ICU and to care for my patient who I knew was infected. My fear was of the unknown; an anxiety that I might get infected or that I would inadvertently harm my family members by exposing them to coronavirus infection. None of this happened. Instead, I have grown as a human being and as a doctor. I saved a life. I was working with inspiring, courageous, generous, and selfless people who were, themselves, willing to face their fears, give of themselves, and take on risk. And look what we are able to do as a result! Together, as healthcare professionals, we must hold our heads high and allow ourselves to feel pride in what we have accomplished.

  Moving toward greater compassion is ultimately the most fulfilling path we can take. Making health systems more patient-focused and friendly, meeting patients where they are, inviting them to express their greatest concerns and fears, incorporating their life circumstances into decisions, flattening the power and knowledge differentials between practitioner and patient, and striving for humanity and compassion as the basis for the healthcare environments and our decision-making must be our objective. The Healing Garden is an example of harnessing the power of grief and loss for a greater good. While this comes out of the anguish of personal loss, it provides a gift to others for their own healing, as well as a shift toward a more holistic and nurturing approach to patient care.

  The more I strive toward empathy and compassion in the care I render, the more I see what we need to change and improve. Like an itch you can’t stop scratching, the piercing losses I experienced have opened my eyes and made me reach for these goals, surrounding myself with like-minded people who look at systems as having the potential for improvement and change, partnering with others across disciplines, like palliative care and nursing, who have much to add as we strive to humanize and elevate the care we provide for our patients. As we have learned in this pandemic, it is not “me” and “you,” only “us.”

  At the same time as healthcare workers are showing compassion for others while exposing ourselves to risk, we are also having to contend with grief and loss. So many of us have lost so much: lives of family members and friends, jobs and the rhythms of our lives, the social connections that bind us together. In the space of three months, I watched as my daughter’s senior year in college came to a sudden halt, no farewells and closure, her graduation canceled. She had job plans for the coming year, now on hold. Our middle son was in the midst of applying to medical school and starting a new job. These things were also delayed. The world over, situations like these are commonplace, with job losses, business collapses, death, and dislocation.

  How do we find the resilience to overcome these misfortunes? How can we use our heartache to channel our energies toward productive engagement, rather than defeat, isolation, or selfishness? How can we use these losses to bring clarity and focus to our efforts? We must fight to maintain our humanity, to bolster ourselves, to come together and support each other. There clearly are limits to resilience. Witness the death, by suicide, of Dr. Lorna M. Breen. She was a frontline emergency department doctor at New York Presbyterian Allen Hospital, caring for an onslaught of COVID-19 patients “who were dying before they could even be taken out of ambulances.” At some point, there can be too much sorrow, too much loss, a numbing, seemingly endless procession of the dead and dying. Although I did not know Dr. Breen, I worry that she might have been overwhelmed by feelings of sadness and despair, perhaps by a sense that she had failed to save patients, who in reality were unsalvageable. It is hard, as a physician, to feel that society does not support your efforts to treat and save patients; we have provided insufficient PPE and also increased case counts by retreating prematurely from social distancing. It seems unfair to expect so much from a few, while not supporting, protecting, or valuing their contributions toward our general welfare.

  Honoring healthcare workers as heroes doesn’t obviate the expectation that we all support and protect each other. What good is a yard sign celebrating “COVID warriors” if you are unwilling to wear a mask to protect others (including healthcare workers) more vulnerable than yourself? Since wearing a mask protects others from you, but not necessarily you from others in terms of viral transmission, two conclusions follow: The first is that this is an essential gesture of mutual respect, which only makes sense if we all adhere to the same social standards, ideally driven by science and leadership, striving to curtail the pandemic. The second is that mask-wearing is a true expression of empathy.

  In the midst of these often crushing blows, there has been a calm and serenity that’s emerged. A worldwide reset of priorities, both personal and collective, an acknowledgment of the importance of connecting with each other and the power of empathy and compassion in the way we conduct our relationships and our lives. I hope we can build on that through mutual support at both the individual and societal levels.

  *From The New York Times © 2021 The New York Times Company. All rights reserved. Used under license.

  ACKNOWLEDGMENTS

  What started as a six-month project has turned into a six-year adventure. I have discovered intersecting worlds outside of neurosurgery that I never knew existed. I am profoundly indebted to my sister Victoria and to her husband, Pat, whose stories I have had the privilege to tell and to their sons, Nick and Will, who live their legacy. I am proud of them all for their devotion to each other and grateful for their warm and loving household, frequently overflowing with the kindest friends, concerned family members, and gourmet meals. Pat trusted me to include Victoria’s journals in this book. I have tried to respect her wishes and the spirit of her work, editing for grammar and eliminating repetition, as she did not have the opportunity to review her own work. Alison Larkin encouraged Victoria to write about her experiences in a journal and also urged me to write as well. Without Alison’s early efforts, I doubt a book would have ever have materialized.

  I am indebted to Leslie and Steve Mackler, who shared their experience with Leslie’s ovarian cancer and chemotherapy. Those early conversations provided the germ for the formal interviews I conducted in the book. Each of my interviewees is extremely busy, yet each was willing to meet with me to discuss their personal experiences and to share their stories and reflections, unfiltered. Dr. Sean Fischer understood what I was hoping to learn about Victoria’s care and was courageous and trusting enough to speak candidly with me after my sister’s death. Similarly, Drs. Matt Manning, Stacy Wentworth, Gus Magrinat, and Irving Lugo, and my former patient William E. Williams, were unflinching in their honesty and willingness to answer my questions. So, too, were Mary Magrinat and Sally Pagliai. Mary kindly provided photographs and captions of The Healing Garden.

  My wife, Kathryn, has been unbelievably supportive and a tireless and excellent editor. She was willing to put her own writing on hold to assist me with this project. Her mother, Margaret Crawley, has also been a careful editor and critic, as have my mother, Elizabeth Buchanek, and my sister, Caroline Stern. Our children, Ben, David, and Abby have also been steadfast in their encouragement. I hope that someday I will be able to return the favor.

  Julie Silver’s Harvard Writer’s Course opened doors for me. There, I met Linda Konner, who saw value in a reimagined version of this book and agreed to become my agent. She has been a tireless advocate. Linda introduced me to Valerie Killeen at Central Recovery Press, who chose to publish Grief Connects Us. Nancy Schenck, from CRP, has been a wonderful editor and
a joy to work with, as have Patrick Hughes, John Davis, and Marisa Jackson. Erika Heilman helped me craft the first version of my book proposal. From the world of journalism, I am grateful to Roberta Zeff of the New York Times, who took a chance on an unknown writer. Also, I appreciate the help of Vivian Toy and Karen Heller. M.C. Sullivan, who runs the Palliative Care program, reached out to me from the Archdiocese of Boston. Other writers have been supportive and encouraging. These include Drs. Sanjay Gupta, who graciously wrote the Foreword to this book, Michael Attas, Mikkael Sekeres, Abraham Verghese, Henry Marsh, Helen Riess, BJ Miller, Pauline Chen, and James Doty. Margaret Edson, a friend from Sidwell Friends forty years ago, graciously agreed to endorse my work.

  I am grateful to my office staff, Lori Underhill, Orren Miller, Pamela Sizemore, and Robin Young. Lori and Pam transcribed the interviews and were helpful and encouraging readers. Drs. Karin Muraszko, Marlienne Goldin, Dave Joslin, Mike Sheinberg, Kyle Jackson, Bill Chandler and his wife Sue, Sue and Joe Upton, Kevin Daniels, Dr. Hans Coester and his wife Cindi, Dr. Jeffrey Segal and his wife Shelley, Jennifer Steinl, Dr. Chris Langston, Dr. Jonathan Berry, Anne and Emma Stringer, Dr. Peter Crawley and his wife Ingrid, David and Catherine Mayer, Dr. Carswell Jackson, Mack Sperling, Kimberly C. Paul, Andy and Dorothy Winkler, and Brian Poteat, R.N. were also supportive friends and discerning readers. Laura Simon Klein encouraged me to write for the New York Times. Members of the Cone Health medical staff, including Drs. Bruce Swords, Mary Jo Cagle, Pat Wright, Jay Wyatt, and William Morgan, along with Joan Evans, Angela Marsh, Jami Goldberg, Mickey Foster, Ann Marie Madden, Cynthia Rizzo, Robert Hickling, and Terry Akin were helpful readers and mentors. Margaret Wynn did a heroic job as a reference librarian, both tirelessly searching the medical literature and assembling references. I found inspiration and support from Dr. Sarah Soule and Dr. Abraham Verghese, who run a wonderful course at Stanford University, The Innovative Health Care Leader, which I had the privilege to attend. Abraham connected me with Irene Connelly, who has been a phenomenal editor. Patient, sensitive, gifted, and insightful, she brought out the best of this work. Without Irene’s help, this book would never have seen the light of day.