Doctors should discuss CPR to clarify and inform patients before they consent to it, say researchers
Patients and the general public appear to significantly overestimate the success of cardiopulmonary resuscitation (CPR) and underestimate the negative impact it can have on a person’s health, suggests research published online in Emergency Medicine Journal.
US researchers have therefore recommended clinicians discuss CPR with patients and their loved ones to clarify the practice’s success rate and the real benefits and risks involved before patients or their families are asked to consent to it.
Emergency physicians often talk to patients or their families about end-of-life care and the outcomes of resuscitation efforts. Patient and family preconceptions of CPR can have a significant effect on the tone of discussions and the subsequent medical care provided.
Previous studies have shown that most lay people overestimate the success of CPR and underestimate its morbidity but no studies on the subject have been carried out amongst patients and visitors in an emergency department.
Patients in previous studies have cited television as a large source of their belief that rates of survival after CPR vary between 19% and 75%, whereas actual rates of survival of CPR range from an average of 12% for out-of-hospital cardiac arrests to 24-40% for in-hospital arrests.
Therefore, a team of researchers from the University of California in the US carried out a survey of 500 emergency department patients and their companions to assess their expectations and examine whether or not variation in information sources, prior exposure to CPR, and healthcare experience would influence peoples’ predicted CPR success rates.
The survey was carried out amongst adults in the emergency department waiting area within a tertiary care hospital in Sacramento, California, between June and September 2016.
An “optimism scale” was created to reflect expected likelihood of survival after CPR, or CPR success, under several sets of circumstances.
Results showed that of the 500 respondents, more than half (53%) had performed or witnessed CPR, and/or participated in a CPR course (64%).
Television was the main source of information about CPR for around 95% of respondents.
At least half of the people interviewed estimated the success rate of CPR as being more than 75% in all situations. The estimated CPR success rates were unrelated to age, sex, race, spiritual beliefs or personal healthcare experience.
The vast majority (90%) of people interviewed said they wanted to receive CPR if it was possibly needed.
Comments also revealed that only 28% of respondents had discussed CPR with a physician, but most participants believed that a physician should talk to them about their CPR preference.
The study had some limitations such as the fact that it took place at a single institution and for convenience, the sample only included English speakers which limits the generalisability of findings. Some participants might also have been distracted by illness or the emergency department waiting area environment.
Nevertheless, the researchers conclude: “Patients and visitors to an emergency department, regardless of prior healthcare or CPR experience, overestimate the likelihood of success with CPR.
“These findings should prompt emergency department physicians to initiate discussions about resuscitation with their patients while also providing them with key information to help facilitate informed decision-making.
“When discussing CPR preferences, emergency department providers should focus on true rates of survival and outcomes in any shared decision-making conversation and should not assume that a patient or companion with healthcare experience will have realistic expectations.”
As her mother lay dying in a Southern California hospital in early May, Elishia Breed was home in Oregon, 800 miles away, separated not only by the distance, but also by the cruelty of the coronavirus.
Because of the pandemic, it wasn’t safe to visit her mom, Patti Breed-Rabitoy, who had entered a hospital alone, days earlier, with a high fever and other symptoms that were confirmed to be caused by COVID-19.
Breed-Rabitoy, 69, had suffered from lung and kidney disease for years but remained a vital, bubbly presence in the lives of her husband, Dan Rabitoy, and three grown children. She was a longtime church deacon and youth leader in Reseda, California, a fan of garage sales, bingo games and antique dolls. Then came COVID-19, likely contracted in late April following one of her thrice-weekly dialysis sessions. Now she lay sedated and on a ventilator, her life ebbing, with no family by her side.
“I had seen these things on TV and I would pray for those people and say, ‘I can’t imagine what they’re going through,’” said Breed, 44. “And now I was living it.”
A single mom of two young sons, she was wrenched with guilt at not being with her mother. “You always picture you’re going to be right by your parent’s side,” she said.
Unlike many families of dying COVID patients, Breed and her family were able to find some comfort in her mother’s final hours because of the 3 Wishes Project, a UCLA Health end-of-life program repurposed to meet the demands of the coronavirus crisis. In the U.S., where more than 120,000 people have died of COVID, it’s part of a wider push for palliative care during the pandemic.
At 5 p.m. on May 10, Mother’s Day, before Breed-Rabitoy’s life support was removed, more than a dozen family members from multiple cities and states gathered on a Zoom call to say goodbye. John Denver’s “Rocky Mountain High,” one of her soft-rock ’70s favorites, played on speakers. Online, a chaplain prayed.
Breed-Rabitoy had been deeply sedated for more than a week, since a terrible night when she struggled to breathe and asked doctors to place her on the ventilator. Confusion abounded, Breed said. Could her mom still hear in that state? Two nights in a row, Breed asked nurses to prop a phone near her mom’s ear.
“I prayed with her. I sang her favorite songs. I read her the Bible,” she said.
Finally, a nurse gently explained that her mother was too sick to recover. If they removed the ventilator, it would be to allow her to die.
That’s when hospital staffers described the 3 Wishes program and asked whether the family had any personal requests for her last moments. They decided on the music and the family Zoom call. Dan Rabitoy requested that a nurse hold his wife’s hand as she died.
After it was over, family members received keychains stamped with her fingerprint and a copy of the electrocardiogram of the last beats of her heart.
“I’m grateful to have these keepsakes,” Breed said. “All these things have been healing.”
The project was developed in Canada but co-launched at UCLA Health in 2017 by Dr. Thanh Neville, an intensive care physician who serves as 3 Wishes’ medical director. It aims to make the end of life more dignified and personalized by fulfilling small requests for dying patients and their families in the ICU.
Before COVID-19, the program had granted nearly 1,600 wishes for more than 450 patients, nearly all in person. The deathbed scenarios have varied, from music and aromatherapy at the bedside to meeting a patient’s request for one last mai tai cocktail.
“We’ve done weddings and mariachi bands and opera singers and 20 to 30 family members who could come in and celebrate,” said Neville, 41. “And none of this is possible anymore.”
COVID-19 has “changed everything,” said Neville, a researcher who focuses on improving ICU care for the dying. Also a clinician, she spent weeks this spring tending to seriously ill COVID patients. Since March, her hospital system has seen more than two dozen COVID deaths.
In the beginning, visitors were strictly prohibited. Now, some may come — but many don’t.
“I would still say the majority of COVID patients die without families at their bedside,” Neville said. “There are a lot of reasons why they can’t come in. Some are sick or old or they have small kids. A lot of people don’t want to take that risk and bring it home.”
It has been hard to keep 3 Wishes going during a time when in-person memorials and celebrations are banned and infection control remains the primary focus. Neville even had to change the way the fingerprint keychains were made. Now, they’re treated with germicidal irradiation, the same method that lets health care workers reuse N95 masks.
The 3 Wishes Project is offered when death is imminent: Patients are enrolled after a decision has been made to withdraw life-sustaining technology or if the chance of death is greater than 95%. The program was created to help patients, caregivers and clinicians navigate the dying process in a less clinical, more humane way. Wishes needn’t be limited to three, and they can be articulated by patients, family members or hospital staffers.
The program is based on palliative care tenets that focus on the humanity of the patient amid intensive medical care, said Dr. Rodney Tucker, president of the American Academy of Hospice and Palliative Medicine. Seemingly small acts that honor an individual life help counter the efficiency-driven environment of the ICU, which can be dehumanizing. They’re at the core of care that has been shown to ease both angst for the dying and grief for those who loved them. “It helps the family that’s left behind cope more successfully with the loss,” he said.
Such efforts also remind providers of the humanity of their practice, which can help them cope with the stress of witnessing death daily, especially during something as extraordinary as a pandemic, he said.
A study published by Neville and colleagues last year found that 3 Wishes is a “transferrable, affordable, sustainable program” that benefits patients, families, clinicians and their institutions. They calculated that the mean cost of a single wish, funded by grants and donations, was $5.19.
Genevieve Arriola, 36, has been a critical care nurse for eight years. When the pandemic struck, she found herself juggling medical care and emotional support more than ever. She took care of Breed-Rabitoy for three days straight, all the while communicating with the dying woman’s family.
“This was a very delicate situation for someone who is married to her for over 20 years and a daughter who was miles away in Oregon and couldn’t see her mom,” she said.
She was also the nurse who held Breed-Rabitoy’s hand as she died.
“I pretty much felt honored to be that person,” Arriola said. “I couldn’t let her be alone. If no one can be there, I can.”
Weeks after her mother’s death, Breed is grappling with the loss. The last time she saw her mom was March 16, at a McDonald’s off Interstate 5 near Grants Pass, Oregon.
The pair met for less than 30 minutes before Breed-Rabitoy headed south down the interstate, her long-planned family visit cut short by concerns about COVID. She had just learned that the local dialysis center was closed to outside patients, and she was worried about growing reports of infection and death. “She told me, ‘I feel like this disease is coming after me,’” Breed recalled.
Now, the keepsakes from 3 Wishes are placed where Breed can see them every day.
“It added such a level of love and dignity we weren’t expecting,” she said. “It made the process of losing a loved one to COVID-19 so much more bearable.”
Well, here it is nearly five years later and I have another harrowing experience to tell you about.
Three months ago, I started having some pain in my left shoulder while walking. (Actually, the shoulder pain started three years ago. But after a stress test scheduled by my GP a year ago, to confirm if this was discomfort was heart related, and the test coming back negative, I decided that the pain was structural. I just figured that I had bursitis.) In fact, all symptoms disappeared after the stress test. Go figure!
Anyhow, the shoulder pain reappeared in March. This time around, it began to radiate down my arm. Soon I couldn’t do any kind of walking, let alone hiking, without discomfort. This was a bit of a problem because I’m an avid walker. Two months ago, the shoulder pain began to radiate not only down my arm but into my arm pit and then into my chest and back.
By this time even I knew that this wasn’t no stinkin’ bursitis.
At the behest of my GP, I reached out to my cardiologist again. I had just had a major pain episode that nearly brought me to my knees, and I wanted his input. At the appointment the cardiologist showed only minor concern. He said he wanted me to do another stress test in 30 days and then see him again in six weeks, the end of July. I couldn’t believe it. I was exhibiting all the classic symptoms of angina and I thought I needed more than a promise of a stress test and a follow visit.
At the end of the appointment, as the doctor was leaving the exam room, I said; “What am I supposed to do about all this crippling pain?” “Oh,” he replied, “I’ll write you a prescription for nitro glycerin. When you begin to experience pain, pop a tab under your tongue. This will give you relief.” And so, it did. It was kinda miraculous actually.
Problem was, I needed to pop a tab at least once a day, often twice a day.
When my GP discovered that I was doing so much nitro, he became very proactive. He ordered a chest x-ray, a CT scan, and some blood work. He wanted to rule out lung problems among other things.
When my first nitro glycerin script was nearly exhausted, I call the cardiologist for a refill. His nurse freaked out at the amount of nitro I was taking and said; “Nitro glycerin is supposed to be used sparingly, for emergencies.” I replied; “Well, then I’m having emergencies each and every day, and often twice a day.”
Apparently, this nurse’s concern lit a fire under my cardiologist. She told me that the doctor now wanted me to skip the stress test, still weeks in the future, and come in for an angiogram. He had an opening on July 2nd. Could I last two more weeks? I didn’t think so.
Meanwhile, my GP wanted me to consult with another cariology practice in Bellingham, 45 miles from where I live. Since I had lost all confidence in the local cardiologist, I agreed. In a matter of hours, I was set up with the PeaceHealth cardiology practice. I was to call the next day and set up an appointment with the next available cardiologist. Things were that critical. Last Friday morning I called and set up an appointment for the following Tuesday.
My GP also insisted that I call 911 if my pain increased.
That night, Friday night, it did. Despite popping two nitro glycerin tabs in three hours I was still in acute pain and short of breath.
At about 10:30pm I woke up Steve and asked him to drive me to Emergency Receiving at Island Hospital.
Once in the ER, I was immediately strapped to a heart monitor, blood was drawn, and arrangements were made to medivac me to St Joseph Hospital in Bellingham. The first blood test revealed normal levels of the cardiac enzyme which measures the levels of enzymes and proteins that are linked with injury of the heart muscle. I thought that was good news. Four hours later, still in the Island Hospital ER, there was another blood draw. This time the cardiac enzyme reading had spiked. The doctor told me I must have had a heart attack in the interim.
I languished for ten hours in the Island Hospital ER. They were having a problem finding transportation to Bellingham.
At 9:30am Saturday morning I was finally on my way to St. Joe’s.
Once there, I was placed in the Cardiac ICU where I was poked and prodded to within an inch of my life. I also got an echocardiogram. I had had no food or water since the previous evening. I was exhausted and, I’ll admit, frightened.
Being the good little end of life educator that I am, I had the foresight to bring along a copy of my POLST (Physician Orders for Life-Sustaining Treatment) form. The ICU nurses were so surprised that I had this important document with me. They said they never see patients being this proactive.
At the top of the POLST form, the very first question asked is about Cardiopulmonary Resuscitation Orders. One can either choose: YES CPR: Attempt Resuscitation, including mechanical ventilation, defibrillation and cardioversion (or) NO CPR: Do Not Attempt Resuscitation. I had chosen the second, NO CPR. I hadn’t come to this decision lightly, but it did reflect my deepest held feelings about end of life care for myself.
Later that afternoon I had my first encounter with the cardiac surgeon. He sauntered into my room as brusque as you please and announced that he wouldn’t even consider the life-saving treatment I needed, an angioplasty, if I didn’t change my POLST form to allow a full code should complications arise during the procedure. I was absolutely stunned! I was being held hostage at this most vulnerable point of my life. And for what?
Cardiac surgeons are at the pinnacle of the medical pantheon and most have egos that surpass their bountiful skills. They almost never encounter resistance from anyone, least of all from a lowly patient. But I stood my ground.
“Are you telling me that you won’t save my life if I don’t grant you a full code?”
He responded; “Yes, my hands are tied.”
I couldn’t believe my ears. I tried to explain why I had chosen the DNR (Do Not Resuscitate). He just blew me off. He was so condescending and patronizing. My efforts to defend my choices fell on deaf ears. I could just imagine him thinking; how adorable is this? A layman trying to play doctor with the big boys? The standoff continued.
“Why do we even have POLST forms?” I asked.
“They are for emergencies.” He responded.
“So, and EMT (Emergency Medical Technician) or an ER doc would be constrained by my POLST, but not you, a cardiologist? I see! Actually, I don’t see. This is ridiculous.”
He just stared at me.
You know how this is gonna end, huh?
In the end I sheepshly relented. What could I do? I was so bummed.
The cardiologist walked out of the room without another word and I had no idea where I stood.
Hours later, I asked one of the nurses; “Will I be getting the angiogram, or not?” He didn’t have an answer. Nothing like adding anxiety to an already overburdened heart.
Around 6:00pm two burly nurses stopped outside my room with a gurney. “Let’s get you up here.” One said pointing to the gurney. “What’s going on?” I asked. “Time for your angioplasty.” And just like that I was wheeled off.
I guess it was determined that my case was critical, and no time could be wasted in attending to me, POLST form be damned. My echocardiogram showed a major blockage in my already weakened heart. An hour and a half later I was the recipient of two brand-spankin’ new heart stints, don’t cha know.
I’ll spare you the gory details of my recovery. I’ve gone on too long already. Suffice to say that with the assistance of a cohort of amazing nurses and other support staff, I am here to relate this story to you. God bless ‘em all!
There are a lot of lessons to be learned here, not least of all is our right to choose the end of life path we desire despite the pressures of conflicting interests. And how we ought to stick to our guns because our wishes are sacred all bullying aside. But the biggest lesson and…
The Moral Of This Story Is
My friends, life is short! Live every day like it’s your last. Be kind to yourself and those around you. Because, in a twinkling of an eye, it can and WILL be over.
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.
There has been so much clinician distress with the Covid-19 pandemic. So many physicians, nurses, and health care professionals have suffered physical, emotional, and moral difficulty taking care of severely sick patients. Some have even committed suicide.
As an ICU physician, I feel this firsthand and believe the reason for the anguish is that we, as critical care doctors and nurses and health professionals, are used to making a difference in the lives of our critically ill patients. Yes, we do lose some patients despite all that we do. But, for the most part, the majority of the patients we see and care for in the ICU get better and survive their critical illness.
Covid-19 has upended all of that.
Before Covid, I would not think twice about placing someone on a ventilator. It is a life-saving measure. With Covid, however, many patients who go on ventilators never come off. This is very distressing.
It is just so hard to try and try and try — spending many waking and sleeping hours — to help these patients pull through, only to have them die on you. Many times, the deaths are expected. Sometimes they are not, and those deaths are the most difficult to bear.
We are used to seeing death in the ICU. It is inevitable that some patients, despite all that we do, are going to die. With Covid, however, it is different. So many have died, and what makes it so hard is that these people are dying alone. Their families are only left to watch them die, if they so choose, on FaceTime or Skype. I’ve lost a daughter to critical illness. I cannot imagine the horror of not being able to be there at her side.
I was speaking to a fellow ICU doctor, and he told me that it seems all he is doing in the ICU is ensuring a “good death” for his patients, and this has deeply bothered him. He is not used to this amount of death. None of us are. It is very, very hard.
Is there any such thing as a “good death”?<
It seems oxymoronic that the words “good” and “death” can be juxtaposed. As doctors, our whole existence is to prevent our patients from dying. So, in one sense, there is no such thing as a “good death.”
To be sure, I have seen plenty of “bad deaths” in the ICU. Of course, those include patients whose death was unexpected. At the same time, there are patients who we know (despite everything we do) will not survive. In those cases, we do our best to make sure the patient does not suffer. If a patient dies while suffering pain or distress, or they get care that is not consistent with their values and wishes, then — to me, at least — this constitutes a “bad death.”
But, indeed, there can be a “good death.”
None of us knows when or where we are going to die… If, however, we can die with comfort, without pain, without distress, and with complete dignity, then that is sometimes the best outcome.
As a doctor, especially an ICU doctor, it is awesome to see our patients do well and survive critical illness. It gives me an indescribable feeling of warmth and joy, and it is the fuel that keeps me going for a very long time. This joy has only been amplified during the Covid crisis. Watching one of our patients — who was very sick and I thought for sure going to die — walk out of the hospital on his own made me absolutely ecstatic.
Sadly, however, that experience has been fleeting with Covid, which has been so disheartening. Yet, even in death, there is an opportunity to do good. Even in death, we can do all that we can to ensure our patients die in peace, without pain, without suffering, and with the dignity they deserverecent study found that approximately 25% of patients experienced at least one significant pain episode at some point in the last day of life. More than 40% of patients experienced delirium. Delirium is an altered state of consciousness, and as ICU doctors, we work very hard to minimize this experience in our patients. In more than 22% of ICUs in America, there were high rates of invasive therapies at the time of death. Almost 13% of patients were receiving CPR at the time of their death, and more than 35% of patients died on a ventilator.
If getting CPR or being on a ventilator will only prolong suffering, or if either is not consistent with a patient’s wishes or values, then I — as their physician — must do everything I can to ensure this does not happen.
When I speak to families on the phone, trying to comfort them in the face of the death of their loved one, I promise this one thing: “I promise you that your loved one will not suffer. I promise you that I will make sure they are not in pain or in distress.” It doesn’t make the death of their loved one any easier, I know, but it is the absolute least I can do to make a horrible situation better.
None of us knows when or where we are going to die. Many (if not most) of us do not know what will cause our death. Those factors are beyond our control. If, however, we can die with comfort, without pain, without distress, and with complete dignity, then that is sometimes the best outcome. That is a “good death.”
And if it is inevitable that a patient will die, and I can help that patient die a “good death,” then that is my job. And in that duty, there is some good, some light, in the overwhelming darkness of this pandemic.
As my cancers progress, I want to be in charge. I want the legal option to die, if need be, before it is too late to consent to my own death.
By Dr. Tom R. Fitch
Remarkable advances in medical care are helping us live longer. But that means there also are an increasing number of people living with advancing serious illness.
The vast majority understand they are living with a terminal condition, yet they and their families are unprepared for the final stages of life. Relatively few have had discussions with their physicians about their prognosis and end-of-life care options. Their wishes and goals are not discussed, and no meaningful informed consent regarding further disease-directed treatments is provided.
“Let’s try this,” becomes the default recommendation, and patients are commonly led down a path of relentless disease-directed therapies of limited to no benefit. Tragically, more treatment too often results in more suffering and shortened survival.
With the expert end-of-life care currently available, dying and death can be meaningful and peaceful for many. But to believe all deaths are “natural” – peaceful and without suffering – is just wrong.
I cared for patients with cancer for more than 30 years and increasingly provided palliative and hospice care over the final 17 years of my career. I saw agonizing deaths despite my best efforts, and it was not rare for patients to ask me how I might help accelerate their dying. That, however, was not an option in either Minnesota or Arizona where I practiced.
Patients must understand their options
Now, I too am faced with terminal illness. I have multiple myeloma and non-Hodgkin’s lymphoma, and despite aggressive care, I have not achieved remission. My cancers are incurable.
I contemplate dying and my death and those thoughts include consideration of medical aid in dying. I do not know if I would ever self-administer a lethal dose of medications, but I pray that the option is available for me.
I do know that we must help patients and families overcome the taboo of discussing their prognosis, dying and death. We need to facilitate meaningful end-of-life care conversations among patients, their families and health-care providers; promote the completion of advance directives; and encourage discussions of patients’ wishes, goals and values.
Patients and families must be informed of the many end-of-life care options available – including the expertise of palliative care and hospice providers, discussions regarding the possibility of stopping disease-directed therapies, withholding or withdrawing more advanced supportive care and/or devices, voluntarily stopping eating and drinking, and palliative sedation.
Patients near the end of their life also should have access to medical aid in dying (MAID).
What medical aid in dying laws do
I fully respect the conscience of those who oppose MAID; they are opposed for passionately held personal beliefs and values. I simply ask that they similarly respect my strongly held beliefs and values.
Guidance in the American Medical Association Code of Medical Ethics understands this divide: “it encompasses the irreducible moral tension at stake for physicians with respect to participating in assisted suicide. Supporters and opponents share a fundamental commitment to values of care, compassion, respect, and dignity; they diverge in drawing different moral conclusions from those underlying values in equally good faith.”
MAID is now legal in nine states and the District of Columbia, available to more than 70 million residents. After nearly 50 years of real-word experience, there has been no evidence of the “slippery slope” or “increased societal risk” opponents routinely cite.
We have seen no indication of a heightened risk for women, the elderly, poorly educated, the disabled, minorities, minor or those with mental illness. There has been no rising incidence of casual deaths and no evidence to suggest that MAID has harmed the integrity of medicine or end-of-life care.
MAID laws clearly provide adequate safeguards and allow for the position of dissenting physicians. The laws respect their conscience and give the right to any physician not to participate.
This is patient-centered care
Those of us who support MAID are asking for the same – respect for our conscience and considered judgment. We do not believe we are doing harm. We are caring for a competent adult who has a terminal illness with a prognosis of six months or less. We are providing patient-centered care consistent with the patient’s wishes, goals, beliefs and values – helping that patient avoid protracted, refractory and avoidable suffering.
One false narrative espoused by opponents – that “participation in MAID is suicide” – needs to be addressed. Participants do not want to die. They have a progressive terminal illness, and meaningful, prolonged survival is no longer an option.
They have full mental capacity with an understanding of their disease, its expected course and their prognosis. They have the support of their family. They feel their personhood is being destroyed by their illness, and they want their death to be meaningful and peaceful.
None of this is true for people who die by suicide.
Personally, I no longer struggle with the ethics, morality and other controversies surrounding MAID. Ethical principles and moral laws alone are just not sufficient to answer the complex questions surrounding an individual’s dying and death.
Our diverse country and our Constitution forbid us from imposing our own religious and faith beliefs on others. When we try, we are forcing others to conform to our beliefs and we are turning a blind eye from truly seeing the very real human suffering that is in front of us.
It is devastating for patients if we ignore their life stories, their family, their culture, and the impact of their disease and treatment on their life and well-being. The value of their life, as they define it, has vanished and they want to die on their own terms.
This is not a challenge to God’s divine sovereignty but a challenge to the disease itself. Patients are vowing that it will no longer be in charge.
As my cancers progress, I too want to be in charge. I want the legal option to die, if need be, before it is too late to consent to my own death. I desperately want to avoid recruitment into that borderland where I would vegetate as neither here nor there.
I ask for your unconditional trust and I ask that those opposed to MAID for themselves, respect my prayerful discernment and personal requests for end-of-life care as I believe it is consistent with my needs, beliefs and values.
By Kevin Armstrong The morning after he turned 52 last month, Brother Robert Bathe emerged from the Millennium Hotel on West 44th Street. He ambled half a block into Times Square and reflected on the emptiness. A street cleaner’s whoosh broke the silence.
Dressed in a brown robe, the traditional garb of his Carmelite order, Bathe began his daily walk down Broadway. At 28th Street, he hooked left and continued to Bellevue Hospital, where he is a Roman Catholic chaplain and bereavement coordinator.
“Welcome to ground zero,” he said before a nurse trained a thermometer gun on his forehead and scanned for a reading.
It read 98.6. The nurse nodded.
“Normally,” he said, “the family is there with me bedside at death, and when we say the Our Father it is very emotional. Now I stare at a person that is taking their last breaths. I’m with a doctor and a couple of nurses. We’re saying goodbye.”
Bathe is the friar on the front line of the coronavirus pandemic. A native Tennessean who was a soil scientist before entering religious life at age 27, his Southern accent is the first voice many patients’ family members hear from the city’s oldest hospital when he calls to inquire about special needs.
Each morning, he reviews death logs. He then walks through the emergency department and intensive care unit, where he stands behind glass and cues up music on the smartphone he keeps in his pocket. “Bridge Over Troubled Water” is a favorite selection. On Funky Fridays, as he calls them, Bathe mixes Benedictine chants with James Brown. If patients are awake, he flexes his biceps or pumps a fist — encouragement to stay strong. He takes precautions when praying over the intubated, slipping on an N95 mask and face shield. In all, he ministers to more than 25 patients daily.
“Music gives a little more sense of sacredness so I don’t get distracted by nurses and doctors screaming,” he said. “I am focused on that patient, looking at that face. I know who that person is, imagine what it is like for them to be alive.”
His pager pulses with death updates. It is programmed to receive alerts for cardiac emergencies, traumas and airway issues. Whenever a coronavirus patient on a ventilator needs attention, it comes across his screen twice. When a nurse who worked in the neonatal ICU died of covid-19 recently, Mary Ann Tsourounakis, Bellevue’s senior associate director of maternal child health, called pastoral care for help. A group of nurses grieved. First to arrive was Bathe, who led them in prayer in a small hallway.
“One of the most healing and loving I’ve heard,” Tsourounakis said. “People think it has to be a big production. Sometimes those moments are the moments.”
The virus continues to paralyze the city and stretch the limits of its hospital system. Confirmed cases have surpassed 185,000 and more than 20,316 deaths had been recorded, according to the New York City Health Department.
Bathe’s path to New York began in Knoxville, Tenn. He grew up around his grandfather’s cattle farm, went on frequent hikes as an Eagle Scout and eyed a career as a forest ranger while a teenager. His mother, Linda, worked at the University of Tennessee, and she consulted with faculty members about her son’s future in forestry. Prospects were slim, and alternate paths — archaeology or agriculture — were suggested.
He didn’t see himself traveling to Egypt to unearth tombs, so he dug into agricultural studies and toiled with botany and geology as well. Following graduation, he worked for the Buncombe County environmental health agency in North Carolina. Hired to protect groundwater, his release was to drop a line in honey holes for catfish, pitch a tent and listen to bluegrass songs after dark.
One day, Bathe was sent to meet a man named Robert Warren to evaluate his soil so he could build a house. When Bathe arrived, he saw Warren slumped over in his truck. As Bathe approached, he said, Warren grabbed his hand and asked, “Would you pray with me?”
They recited the Lord’s Prayer, he said. Moments later, he was dead, Bathe recalled. Bathe accompanied him to the hospital and attended the memorial service and funeral.
Bathe joined the Carmelites soon after, and in 1997 was assigned to Our Lady of the Scapular and St. Stephen’s Church, two blocks from Bellevue. Lessons followed.
One day, he said, a woman fell from her window in a neighboring building and through the church roof. Bathe was sent up to investigate.
“First dead body I ever smelled,” he says. “Life is tender.”
Transfers are part of the friar life. He taught in Boca Raton, Fla., and served as the vocation director from Maine to Miami before returning to Manhattan two and a half years ago.
In ordinary times, Bathe receives a monthly allowance of $250, lives in the St. Eliseus Priory in Harrison, N.J., and rides the PATH train. He fell ill in January, experienced the chills, registered a temperature of 101 and lost weight. He believed it was pneumonia then and self-isolated, using a back stairwell to his room. His brothers left meals outside his door, and he returned to Bellevue after convalescing. He has yet to be tested for covid-19.
Since March 30, the hospital has facilitated his participation in a program that provides free or discounted rooms for front-line workers, first at a Comfort Inn on the west side of Manhattan and now at the Millennium, to limit his commute. Along the route to work, his bald head, eager gait and hearty laugh are known to mendicants and administrators alike.
He carries on the tradition of the Carmelites, who have ministered at Bellevue since the 1800s, through periodic epidemics, saying Masses from the psychiatric ward to the prison unit. Colleagues include a new rabbi and a 20-year-old imam.
When a Catholic dies, he performs the commendation of the dead, a seven-minute service. His responsibilities range from distributing Communion to finding prayer books for patients across faiths to leading memorial services for staff. He is “staunchly against” virtual bereavement, which has become common amid the pandemic, insisting on providing a physical presence.
“People are looking for a miracle when the miracle is to let go,” he said. “Call me too practical, but I don’t pray they leap out of the grave like Lazarus. I think we’re meant for better. We’re meant for God.”
Hospital staffers are processing what has happened since the pandemic first gripped New York, and they’re bracing for a potential second wave. Since Lorna Breen, medical director for the emergency department at NewYork-Presbyterian Allen Hospital, died by suicide last month, Bellevue has increased its support services for employees. Questions about closure come from all mourners.
“Families ask, ‘Are we going to be able to have our loved one go to Mexico?’ ” Bathe said. “How are we going to do the next step, to bury our loved ones?”
On a recent Sunday, Bathe stepped outside for a breather in what some people call Bedpan Alley, the east side neighborhood that includes hospitals and a shelter on First Avenue. He checked on a homeless woman who sits in a chair facing Bellevue each day, rubbing his thumb against hers as she slept. A shoeless man was prone on the sidewalk. Bathe inquired about a can collector’s economic concerns. Business was slow.
“Are you a priest?” a woman on a bench asked Bathe.
“No, ma’am,” Bathe said. “I’m a friar.”
She introduced herself as Shonda. She was anxious about a meeting with her manager.
“You want to say a prayer for me?” she said.
“Put the phone down,” he said.
Bathe closed his eyes and prayed.
“Breathe,” he said.
“I’m going to breathe,” she said.
As he walked back to the hospital, his pager went off. “Cardiac Arrest,” it read, “10 West 36.”