Living (and Dying) on Your Terms: End-of-Life Decision-Making Before and During COVID-19

Hannah Norem, Wake Forest University, J.D./M.Div Dual Degree Candidate ’23

Preface: Chaplaincy and End-of-Life Decision-Making

As a hospital chaplain, you have the privilege of experiencing the best and worst parts of patients’ lives.[1] You bear witness to the beginnings of life that take place in a hospital, like births and successful organ transplants.[2] However, you also are in the room when people are experiencing the worst days of their lives. Unspeakable tragedies and accidents, patients coding, and other traumatic events dot a chaplain’s shifts. Hearing a pager go off in the middle of the night and having to rush down to the emergency department to comfort strangers is not uncommon. While this is a normal day in the life of a chaplain, it is not a normal day for the patients and families the chaplain encounters. The difficulty and the ritual found in a chaplain’s everyday life and work do not detract from the sadness of any particular patient encounter but rather attune you to the rhythms of beginning and ending that are integral to the human experience.

From my first days as a chaplain, I heard the same sorts of things again and again. Entering the patient rooms in the ICU, I often found an unresponsive patient teetering in the liminal space between life and death. However, the family that gathered around the bedside, as this was before COVID, painted a robust picture of who this patient was before they found themselves laying in a hospital room, hooked up to countless machines and monitors. So many times, the families that I spoke with said they would have never wanted to be this way.  Speaking to families of veteran farmers, resilient teachers, and other pillars of their community, the spouses, siblings, and others portrayed how self-reliantly this person lived but how dependent the patient now was on machines and other people for every facet of their continued existence. How could someone who never needed anything in their life from others now be so helpless? Grieving families looked me in the eyes with their tear-soaked faces time and time again as they explored this painful juxtaposition taking place in front of them.

Trauma after trauma, visit after visit, I held space and looked family members straight in their souls as they suffered unspeakable heartbreak and loss. After about the fifth death that I attended, I wondered just how end-of-life decision-making and the lack thereof affects these situations at the bedside. While communicating one’s wishes about life-sustaining treatment does not take away the sense of sadness and loss that is experienced in a hospital room, would it have been better for family members to know just how their loved one wished to continue treatment when it got to that point? These fictional vignettes will examine the human and ethical dimensions of end-of-life decision-making, both before and during the COVID-19 pandemic. While there certainly are similarities to the times before and during the COVID-19 pandemic, the systemic challenges and human costs created by COVID-19 are too numerous to not address when proposing changes to end-of-life documentation. Ultimately, patients and their families need to be informed of all the treatment options to make the best choice for themselves. Otherwise, they are left with unanswered questions and unspeakably prolonged grief with many decisions to make.

Dying On Your Terms: Maria’s Story

For anyone who has never completed a unit of clinical pastoral education or a chaplaincy internship, the idea behind chaplaincy seems very daunting. From the very first days at the hospital, the chaplaincy student is thrown into patient visits, often with little to no training about how to conduct a patient visit or even what to record in a patient’s chart after the encounter.[3] It can be stressful, especially for younger students or people who are not as extroverted and comfortable talking to strangers. As a 23-year-old graduate student, I was one of these stressed-out CPE students. I had no problem talking to people, but how was I supposed to be pastoral for them, especially when they were going through things that I often had no exposure to, like cancer, child loss, or another complex traumatic event? 

A chaplain quickly learns that the best education they receive about how to be a chaplain does not come from inside a classroom but in interacting with patients and their families. Maria (Note: all names and other identifying information have been changed to preserve patient privacy) was one of my first and best teachers. A patient in the rehab unit, Maria was recovering from joint replacement surgery. Knocking on the door and walking into her room, her eyes lit up when she saw that it was not some medical professional there to cause her pain or discomfort in any way, but to see her as a human with the dignity every patient has. While she was in her 80s, she, by every measure of health, was healthy and was likely to live many more years of quality life. However, when I introduced myself as a chaplain, she took my sweaty and nervous palms in her worn and wrinkled hands and looked me in the eyes with this sort of twinkling playfulness. She asked me if I was new as a chaplain, and when I said yes, I could see the mischief deep in her spirit. A pastor’s wife, Maria was not averse to speaking with people of a particular spiritual or religious bent but instead welcomed the opportunity to share with anyone the wisdom she had gleaned over the years. 

“What do you know about death?” she asked me as I sat down next to her bed. I replied that while I had people close to me pass away, this is not about my life but about what she as the patient needed at that particular time. In chaplaincy, a chaplain is told to think about the patient first and deflect any personal questions, as you are not there to share about yourself but to hear about them and attend to what they were experiencing as a hospital patient. Maria was having none of my deflecting, so in all of her wisdom, she continued to ask me about death. “Have you ever seen someone die on their terms?” This was a great question for me to ponder, so I asked her what that meant. “It is when someone has fully communicated what they want and it is followed.” She then went on to tell me that she had communicated to her children and her grandchildren that while she was healthy then and was going to live many more years if she began to decline, she wanted to go peacefully and not be hooked up to all kinds of life-sustaining treatment. She told me that after hearing about her friends and older relatives who had recently died, she learned that not making these decisions and communicating them to others in advance can put your family in a difficult situation. 

Her eyes, misty with tears, had a different kind of sorrow to them when she told me her cousin, who failed to communicate any of her end-of-life wishes, was hooked up to all kinds of machines and monitors. “For such a peaceful person in her life,” she remarked, “she did not die a peaceful death.” Her cousin’s children, who were her decision-makers, did not want to see their mother pass away, so they kept her alive probably longer than she should have been. “Although the funeral home did the best they could,” she added, “it is hard to undo what a body has fought so hard to prevent.”  

A well-informed patient is often in the best place to make the best decision for themselves and communicate that to their family members. I asked her if she had filled out any forms that indicated her preferences for how she wanted to die. She did not have a terminal illness, she told me, so she had appointed her son to be her medical power of attorney so that he could make decisions regarding her health care for her if she was no longer able to make them for herself. With playfulness dancing in her eyes, she recalled that she told her son if he were ever to disrespect her wishes regarding health care, she would come back from the grave and haunt him for the rest of his life. After speaking to Maria for as long as I had, I knew that this was not an idle threat. She was confident in how she lived and confident in how she wanted to die. 

After I thanked her for her time and her wisdom, I went back to the chaplaincy office and thought about what she had told me. What does it mean to die on your terms? How do you communicate that to your family members before it is too late? Maria showed me how a person who is informed of all of the options for life-sustaining treatment and comfortable enough in their wishes and desires has often the most grounded outlook on death. She appeared very comfortable discussing this very difficult topic with me, and I reasoned that was because of not only her repeated exposure of what to do and not do when dying but also her reflection on what she wanted for herself. However, not all patient encounters were this enthusiastically geared toward making the best decisions for everyone involved.

“This Is How He Wanted to Go”: Brandon’s Story

My pager went off, and I sighed. It seemed to me that with every chaplaincy shift, the pager became more and more active. The pager was an arbiter of busy and not busy, hectic and not hectic. Some days, the pager was completely quiet, meaning I was able to round to different patients on their floors and see how they were doing. When the pager went off, this meant that either there was a code blue somewhere in the hospital that a chaplain needed to attend to, or something even more stressful: an emergency department visit.[4] While I became used to going down to the emergency department during my time as a chaplain, the trip never became any easier. I knew with each emergency department visit, there would be lots of energy from the care team and the family members of the patient. Each encounter carried with it about an equal likelihood that the patient would live or die. With each vibration of the pager, a sense of both adrenaline and dread filled me: what would this particular page hold for me, and more importantly, how could I be the best possible presence for a family in this situation?

Unfortunately for me, this was the second time that the pager had gone off that day. A brand new nurse paged the chaplains, not knowing the protocol after one of her patients unexpectedly died of chronic kidney issues. This particular death was not that difficult to attend to, since the patient was elderly, death was relatively expected. It was just the patient’s spouse in the room, swapping stories with the nurses through tears—grateful tears for the life shared with her now-deceased spouse. I shared a few words with the spouse and the nurses, and once I had gathered all the information I needed to chart, I thanked everyone for their time and went back upstairs to chart the first death that I attended on my own. 

I had not so much as sat down in the chaplain’s office before I heard the familiar vibration of the pager. The emergency department was calling with a tough case—a motorcycle accident. I completed my unit of chaplaincy in South Dakota, where there are no motorcycle helmet laws for adults.[5] Because of various political pressures like the Sturgis Rally that bring in millions of dollars and hundreds of thousands of tourists to South Dakota every summer, the state legislature thought it acceptable to make motorcycle helmets optional in South Dakota.[6] They must have not asked a trauma surgeon what they thought about that idea.[7]

Completing my chaplaincy internship in South Dakota was both a blessing and a challenge. Being in a smaller community for chaplaincy was a blessing in that relationships were much easier to develop between me and members of the care team, since there were fewer doctors, nurses, and others to establish rapport with. However, serving in South Dakota was a challenge in that the vast swath of nothing that covers most of the state made transporting trauma patients a great undertaking. If a patient was injured far from a hospital with the capacity to care for a trauma victim’s complex needs, it would often take hours to stabilize and transport the patient–hours more than it took for their family members to arrive at the hospital. For the chaplain, this means their role is less of serving as a liaison between the patient’s family and the care team as they treat the patient and more sitting with the patient’s family members, who beat the patient to the hospital, as they stressfully live through the worst hours of their lives, not knowing what is going on with their loved one. 

This particular trauma was a car versus motorcycle accident that happened when a young driver, not even sixteen years of age, ran into a helmetless motorcycle rider. While the driver of the car was just shaken up, the driver of the motorcycle was being brought from many hours away, so the patient’s sister and cousins arrived faster than the helicopter and ambulance could. As with anybody going through an incredibly difficult trauma, the family members had plenty to say about the patient, Brandon, and his particular life choices that led him to this moment. The family members painted Brandon as afflicted with many different health conditions that caused him to understand his life as one with a limited duration. “Brandon knew he wasn’t going to live long, so he just decided to grab life by the horns.”

I had to hide my incredulity as Brandon’s family continued to describe him as a person who seemed to have no regard for his life and his body. His sister especially seemed wholly unsurprised that he had ended up in the trauma bay of a hospital since he had behaved recklessly from a young age. While the family members were certainly sad that this terrible accident had happened and extremely stressed about the outcome of these events, from this I learned that sometimes one’s end-of-life wishes are implicitly communicated throughout their life, not just when they are faced with a difficult diagnosis. They are communicated in their words and in their actions and how they choose to live out their days. However, living out your end-of-life decisions instead of recording them in a legally binding way is extremely frustrating for the care team, who did not know Brandon previously but took an oath to do no harm and try to treat every patient as thoroughly as possible. Since Brandon was also relatively young, even with all his health problems, the care team was optimistic that treatment would be successful. 

Regardless of the care team’s initial optimism, no intervention seemed to work for Brandon, and his condition only grew worse. The doctors and nurses I spoke with were struggling with the lack of progress in Brandon’s condition and the lack of guidance they were receiving from his family. Brandon’s wife was too overcome with emotion to make any decisions in terms of her spouse’s health care, and other family members were still flippant about his life and how he ended up in the ICU in the first place. Despite the care team’s best efforts, Brandon’s body was not dealing well with the trauma of the accident. 

However, his family was at an impasse about what next steps to take. The days seemed to feel like weeks as the medical team explained to Brandon’s family that they had exhausted their treatment options, but then the family met the medical team with frustration, sadness, and grief that no one was prepared to contend with. If Brandon had left his thoughts in writing with his family or appointed a medical power of attorney, this impasse would likely have been avoided. Especially for someone with as many compounding diagnoses as Brandon that per his family, decreased his quality of life, it was essential to communicate his wishes to his family. When Brandon was finally removed from all the machines keeping him alive, days after the accident, his broken and mangled body gave up whatever spirit was left. 

The tragedy of trauma often appears in multiple, fractured ways in both the patient and their loved ones. For Brandon, those tragedies could have been mitigated if he had communicated his wishes clearly to his loved ones. The unfortunate lack of communication resulted in prolonged pain and suffering for not only Brandon but also his family members who sat vigil day and night by his ICU bed. While Brandon may have lived on his terms, he did not die on his terms.

COVID: New Faces, New Places, Same Tragedy

While there were certainly more traumas that I faced as a chaplain, they are both too numerous and too similar to put in this paper. With every trauma I encountered as a chaplain, I was surrounded by people who did not want to be in that high-energy situation. These people I met in the emergency department were not trained chaplains or medical ethicists, but rather regular people faced with some very challenging decisions. Often lacking clear guidance from their loved ones, they had to make a choice based on what they knew to be best for that particular patient, which conflicted between families and friends, cousins, and neighbors who all knew the patient allegedly well. Because I was surrounded by mild-mannered Midwesterners, these conflicts between family and friends did not often escalate to yelling matches or physical altercations but left in the air a certain weightiness and energy that seemed to sizzle every time someone opened their mouth. 

After that summer ended, I realized chaplaincy was not for me. Having to hold people’s pain and suffering as your day job is a very difficult thing that certain people do well. I am not one of those people. However, I was grateful for my experience and learned much from my time as a hospital chaplain that I still use every single day. The skills I learned in chaplaincy had never become more important than when COVID hit. COVID has unfortunately made the world need to shift and change in many different ways, shedding old patterns that were quickly found to be unhelpful in a time of great global suffering. As the virus mutates and changes, so must the rituals that surround hospitals and end-of-life decision-making. Chaplains now are being forced to conduct patient encounters over the phone,  FaceTime, and online platforms like Zoom and Webex.[8] There is limited ability for handholding and being at a patient’s bedside because of the PPE and distancing protocols found in inpatient care settings, like hospitals.

Consequently, end-of-life decision-making has too changed. COVID is making people sick who have never needed to have a relationship with a health care provider. COVID is causing young people to have to go on ventilators and no longer be able to make medical decisions for themselves. COVID is keeping loved ones from being able to visit their family members, due to visiting hours and other restrictions on hospital visitation. Even clergy have not been permitted in some places to visit parishioners at their hour of death.[9] While all of these changes are a necessary part of living in a pandemic, COVID has caused people to have a reckoning with what end-of-life care and its decision-making process look like.

“I’m fighting as hard as I can”: Micheal’s Story

Micheal was a 39-year-old man with five children.[10] Not against the vaccine, he just wanted to wait to see how people would react to it. He wanted to take a cautious approach with what he saw to be a quickly developed vaccine. This did not mean that he did not take precautions against COVID. He wore a mask and washed his hands regularly. He even hesitated to go inside grocery stores, understanding how COVID can be transmitted. However, this wait-and-see approach to vaccination would not work. After an emergency room visit for a bad sunburn, he learned he had tested positive for the coronavirus. He was told by the doctors then to isolate and drink water.

Micheal soon became worse. One morning, he woke his fiancée, Sarah, panicking, struggling to breathe. When he was taken to a different emergency room, the doctors found that he had low blood oxygen due to the coronavirus. His care team did what they could, putting him on oxygen and a machine to open his lungs further. He tried to stay positive, with Sarah cheering him on, telling him to work as hard as he could and do all the doctors and nurses tell him to. Despite his best efforts, he was sent to the ICU, telling Sarah that he tried. He failed to improve in the ICU. With his last phone call to Sarah, he shared with her that he was fighting as hard as he could, but it was just hard. 

Like some of the other traumas that I witnessed when I was a chaplain, the end was brutal and deeply undignifying. Micheal coded and the care team began working on him, shocking him with a defibrillator, performing CPR, administering epinephrine and other drugs to try to kick start his heart again, and generally doing all they could to bring him back. Sarah, who was in the room as all this was going on shared that when a person is a spectator in a code, you are helpless in the face of death, an incredibly tragic experience to go through. Micheal ended up passing away due to complications of COVID-19, leaving five children, including a 17-month-old, and Sarah, his beloved fiancée. Micheal, by all standards, was healthy, with no significant health issues in his life previously. However, now there are five children without a father and a fiancée without a partner due to this terrible disease.

Because Micheal was healthy before contracting COVID, there were no discussions about end-of-life care or what Sarah was to do if something terrible happened to him. There was no power of attorney appointed, and by the time Micheal was moved to the ICU and intubated, he was unable to make decisions for himself. The ebb and flow of COVID can be a frightening thing for decision-makers and patients, since one day, a patient could improve and have moments of lucidity and be weaned off a ventilator, and then next they decline. COVID has put many people, including doctors and other health care workers, in very difficult situations, since the way COVID ravages the human body is situational to every patient and different between days.

Hindsight is certainly 20/20 when you lose someone close to you. Sarah is haunted every day by the waves of grief and regret that come after losing a loved one so tragically. In chaplaincy, the chaplain is instructed to not “should” on themselves. This is a crass way of saying the chaplain should not beat themselves up about making any particular choice during a patient encounter. However, Sarah is left with five young children and wishes she could have made humane and dignified decisions for Micheal when it was clear he was not doing well. Micheal, like Brandon, did not die on his terms, but that is not due to willful recklessness in his life. Micheal died tragically due to a virus whose course in any particular patient is unknown and the virulent spread of misinformation surrounding interventions like the COVID-19 vaccine. 

A New Horizon: Dignified End-of-Life Decision-Making in the Age of COVID-19

Donald is a bodybuilder who manages a gym.[11] Only 33 years old, he did not see the point in getting a COVID vaccine, since the earlier waves of the virus only really affected people that were older and had underlying health issues. When he came down with what he thought was a cold, he did not think it was anything significant until his girlfriend, Kayla, implored him to go get tested for COVID-19. He became sicker once he officially tested positive, and one day he collapsed on the floor of his bedroom. Donald became admitted to the hospital, where he was put on oxygen and brought to the ICU. Because he was in great shape as a bodybuilder, he did not see the need to have a relationship with a doctor for yearly physicals or consider any surrogate decision-making, like appointing a healthcare power of attorney. 

However, when he was admitted to the ICU, he was lucid enough to walk through with his doctor the MOST form designated specifically for COVID-19 patients.[12] He was able to indicate his preferences with artificial nutrition and hydration, and even how aggressively he wanted to be treated. Since he was in such good physical shape before coming down with COVID, he and his doctor agreed that Donald should be treated with the most aggressive care, up to and including an ECMO machine, if one became available. Ever the bodybuilder concerned with his image, he declined CPR if it came to that since he did not want to die with his chest crushed in. Kayla was on the phone as Donald and his doctor were having this conversation about Donald’s end-of-life preferences.

 While it was scary and anxiety-producing to think through all the different steps involved with end-of-life care, Kayla was comforted by the fact that Donald was indicating his wishes in terms of how he wanted to be treated. Since Donald was not married and his parents lived in a different state, it was difficult to relay his parents’ wishes and juxtapose them with Kayla’s if Donald was unable to make his own decisions due to intubation or sedation. While of course, everyone was cautiously optimistic that Donald would fully recover, since Donald knew others who became infected again with COVID even after they recovered, it was important for him to voice these wishes and have them be in effect in case he recovered and then became sick again.

After 11 days in the hospital, Donald was discharged. He had an oxygen tank and lost 25 pounds and faced many more weeks of rest and respiratory therapy before he was able to get back into the gym. Even though he had lost much of who he was before COVID, he was grateful for all of the doctors and nurses that contributed to his recovery and was hopeful that he would never have to go back into a hospital again. Being able to voice his end-of-life preferences and wishes, with Kayla virtually by his side, made him more fully aware of both the brevity of life and the importance of communicating his end-of-life wishes to his loved ones. Becoming a champion of vaccines to anyone who will pay attention to him, he is hopeful that he will never use the MOST form for COVID again but grateful that was an option made available to him in the hospital, without the need of notaries or witnesses to make it official.

About the Author

Hannah Norem, a Houston, Texas native, is a fourth-year JD/MDiv student at Wake Forest University Schools of Law and Divinity. A fourth-generation Lutheran pastor-in-the-making, Hannah is passionate about bridging the gap between the health care and religious fields. After she graduates from law and divinity school in May 2023, she will serve as an intern pastor for a year and (hopefully!) be ordained in the Evangelical Lutheran Church in America (ELCA) in the fall of 2024. While she never wants to be a chaplain professionally, she is known to be stopped in the strangest places (grocery stores, blood donation centers) and has to use her chaplaincy skills as strangers share their lives with her.  


[1] Hospital Chaplain, Mayo Clinic, https://college.mayo.edu/academics/explore-health-care-careers/careers-a-z/hospital-chaplain (last visited Nov. 23, 2021). 

[2] Sarah Lichtman, Transplant Patient Celebrates Two Birthdays in One Month, Cedars-Sinai Hosp. Newsroom (May 17, 2021), https://www.cedars-sinai.org/newsroom/transplant-patient-celebrates-two-birthdays-in-one-month.

[3] Clinical Pastoral Education, Duke Health, https://www.dukehealth.org/support-services/pastoral-care-clinical-pastoral-education (last visited Nov. 23, 2021). 

[4] Emergency Codes & Staff Response, Franciscan Health Sys. (Mar. 2009), https://www.wsha.org/wp-content/uploads/Standardization_FHS_Emergency_Codes_Poster.pdf.

[5] S.D. Codified Laws § 32-20-4 (2021). 

[6] Travis Cummings, Economic Impact of 2018 Sturgis Motorcycle Rally, KOTA-TV (Oct. 11, 2018), https://www.kotatv.com/content/news/Economic-impact-of-2018-Sturgis-Motorcycle-Rally-497093351.html.

[7] Luke J. Hoffman et al., Fact and Fiction Regarding Motorcycle Helmet Use, Associated Injuries, and Related Costs in the United States, Cureus, Nov. 2018, at e3610, https://doi.org/10.7759/cureus.3610.  

[8] Telephone Interview with Mollie Hamre, Chaplain Intern, Southdale Hospital, Edina, Minn. (Oct. 20, 2021). 

[9] Harriet Ryan and Sarah Parvini, Holy Oil, Masks and FaceTime: The Coronavirus Forces Catholics to Adapt Last Rites, L.A. Times (Apr. 11, 2020), https://www.latimes.com/california/story/2020-04-11/last-rites-coronavirus-pandemic-catholics.

[10] Hannah Knowles, ‘I Should Have Gotten the Damn Vaccine,’ Woman Says Fiancé Texted Before He Died of COVID-19, Washington Post (Aug. 1, 2021), https://www.washingtonpost.com/nation/2021/08/01/micheal-freedy-covid-death-vaccine/.

[11] Robi Caryn Rabin, Is the Delta Variant Making Younger Adults ‘Sicker, Quicker’?, N.Y. Times (Aug. 3, 2021), https://www.nytimes.com/2021/08/03/health/covid-young-adults-sicker.html. 

[12] Donald’s MOST Form linked here: https://drive.google.com/file/d/1f7bYt6YbI687NFX-VfhEcrC4CmTMz97e/view?usp=sharing.

Photo by Bret Kavanaugh on Unsplash

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