I am in the surgical waiting room of a hospital, awaiting a new hospice referral. All of the coffee and snack machines have been removed because of COVID. There are only stacked chairs and a tiny, dirty table. I have chosen to wait here because we hospice nurses are not to be seen hanging out in the lobby or cafeteria — there were complaints. I am required to stay at this hospital for my entire twelve-hour shift, whether or not a referral comes in, but I must not be seen.
I have just finished rereading the news on my phone when an older man walks in and begins talking loudly: “I am looking for my wife. I had no problem with this earlier today, but now I do not recognize this place at all. Her name is Cecilia Cline. Cline with a C.” I ask him if he knows what room she is in, and he says, “Room 2 or 3 or maybe 4. I am looking for my wife, and I need you to find her.” I go to the phone on the wall and dial the hospital operator. While I am talking to the operator, the man is repeating what he has told me over and over: “Cline with a C!” I thank the operator and walk the man down the hall to where his wife is. He gives me a stern look and says again, “I had no problem with this earlier.” Then he walks off.
I am sitting at the end of a hospital bed, rubbing the foot of a man who is struggling to take each breath. He is sitting straight up, awake and alert, tears occasionally running into the plastic mask he wears. The mask blasts five times more oxygen into his nose than a healthy person requires, yet his oxygen saturation is still only 84 percent. (Normal is over 90 percent.) An alarm beeps continuously. The man has pulmonary fibrosis and will probably die today, as soon as he decides to surrender and let it happen. He wants to watch the college-football game with his wife first, because “it’s what we do,” and then he wants her to go home while he begins receiving IV morphine and Ativan. After he drifts off to sleep, we will gently remove the high-flow oxygen mask and continue to give him the medications to keep him comfortable. He does not want his family to be here when he dies. I ask if he’d like me to be here, and he says, “That would be a great help.” I say that I can tell he is a good man, and he sobs once — he can’t afford to waste two breaths — and says, “I have tried to be . . . my whole life.” He asks, as everyone does, how long it will take. I tell him I do not know, but I don’t think it will take a long time, and he will be deeply asleep when he dies. He looks at me, and I look back steadily while I rub his foot. There isn’t anything else to say.
I am trying to admit an ICU patient to hospice before she dies. This will not serve the patient in any meaningful way, but it will ensure that her death does not appear on the hospital’s census. The woman has sepsis — a life-threatening infection — and sepsis deaths look like a terrible failure on hospital statistics. A doctor is standing over me, asking how much longer it will take to complete the hospice admission. The patient has been in the ICU for nine days, and I was called fifteen minutes ago. The doctor leans in close to me, his belly occasionally bumping my shoulder as I review the patient’s chart. “You have no idea,” he says, “what it is like to be in those meetings when we catch hell for a sepsis death. You really have no idea.” I complete the admission process, and the woman dies twelve minutes later. Her death will not be included on the hospital census — a great triumph.
I am in the ICU family waiting room, talking with three nearly identical brothers about their eighty-six-year-old mother, who is in a coma, on a ventilator, and receiving continuous dialysis. Her brain is swollen from a hemorrhagic stroke she had two weeks ago. Two of the men sit across a table from me while the third paces around the room. The medical team has just left after explaining to the men that their mother will not get better, will never wake up, and is suffering as a result of all the medical procedures being used to keep her alive. While the doctors were here, the men agreed to admit her to hospice care, but now that the ICU team has left, the brothers will not sign the necessary consent forms. “Saturday,” one says. “We got business up the road, but we’ll try to come back on Saturday.” It is now Sunday morning. I explain that without their consent for hospice care, the doctors and nurses will have to keep their mother alive, which will mean more painful procedures, more time spent hovering between life and death. “We got to get up the road,” says the brother who is looking at me, and all at once they go to the elevator and are gone.
I am at the bedside of an elderly woman named Hattie, who is in the ICU. She has end-stage emphysema and is receiving oxygen through a high-flow nasal cannula. When she sleeps, her oxygen is switched to a BiPAP mask. A respiratory therapist once told me that using a BiPAP is like hanging your head out the window of a car going a hundred miles per hour: the pressure of the oxygen flow is so strong that it can blast people’s mouths open when they take a breath. The mask must be strapped on tightly so as not to break the seal around the nose and mouth. The BiPAP is very loud and prevents the patient from hearing well. It also makes it very difficult for the patient to talk, eat, or drink.
Hattie has declined to be put on a ventilator: the last resort. Her doctors have told her it won’t make her better, and she would need to be sedated to tolerate having the breathing tube in her trachea. The chances of her ever being “weaned” off a ventilator would be negligible. Hattie has been hospitalized many times for emphysema. This latest time she has been in the ICU for twenty days, and her oxygen saturation is lower each time I visit. When she speaks, the number drops into the seventies. I must remind her to rest and catch her breath. Hattie is the sort of person who, after you’ve spent fifteen minutes with her, makes you want to stay and hold her hand forever. All the resident physicians have fallen for her, and while I’m here, several come in to say hello or take her order for a treat from the bakery. One resident leans in to say, “I’ll see you tomorrow at two o’clock with your peanut-butter brownie with sprinkles on top.” She waves and blows him a kiss.
This is my third day visiting Hattie. She has made her decision: “This is going nowhere good, and I’m ready to go to heaven.” She tells me that, when she dies, she will become a guardian angel for Melanie, a young woman who lives in her trailer park. Melanie would drive Hattie on little adventures so she could occasionally leave the tiny RV where she lived. “When I needed to get beyond those four walls to see the world,” Hattie says, “Melanie would drive me and my oxygen tank all over creation. She pushed me everywhere in my chair. One time we went all the way to the Gulf to see a manatee. That child is young enough to be my granddaughter, and she has been so good to me. I’m going to watch over her from heaven starting the minute I get there.”
Hattie has chosen to begin hospice comfort care tomorrow at 2 PM. I tell her I will not be working that day. She squeezes my hand, gives me a long look with her gray-blue eyes, and says, “I need you with me when I do this.” I promise her I’ll come in. Her plan is to enjoy the peanut-butter brownie with sprinkles on top, then start receiving morphine and go to sleep. If she survives for several hours without the high-flow oxygen, we will bring her to the hospice house, where Melanie can visit before she dies. Although this plan clearly comforts Hattie, she is running out of time. I tell her I will see her tomorrow and hug her goodbye. In the morning, when I call to check on Hattie, the unit clerk tells me that she died a little after midnight.
The other day I ran into a doctor I used to work with in my old job as an OB-GYN clinic manager. “So,” she asked, “do you still like your, um . . . deal-with-death job?” I told her yes, that I had made the right choice. Years ago, when I worked in labor and delivery, I often volunteered to take care of the mothers whose babies had died before labor had begun. Few nurses wanted to take on all that sadness, but it seemed to me that if anyone has ever needed support, it is a woman giving birth to a dead baby. After the delivery I would help the mother out of bed and into a rocking chair, then place her baby in her arms with a warm blanket around them both. “Every baby needs to be rocked,” an older mentor had once told me, and I never forgot that. I think I knew that if I ever got tired of OB-GYN, I would go to hospice. I want to help carry the burden when it is heaviest. The dying patients and their families need time with a compassionate stranger: someone they don’t have to expend their fragile energy to try to support or protect. Someone who can listen without judgment as they speak of their pain, their loss, their fear, and their intimate experience at the end of life.
I get an urgent call from the ICU: a seventy-year-old woman has had a brain tumor removed and is bleeding internally. She is a Jehovah’s Witness and has signed a form declining all blood products. Her four adult children do not share her religious beliefs but respect her wishes, even though they understand this means their mother will die very soon. In fact, the patient’s heart stopped once already this morning, but the ICU team was able to revive her and start “pressors” — powerful medications to artificially maintain her blood pressure.
The doctors have informed the family that hospice is the next reasonable choice. I talk with them about what comfort care means, and they gratefully sign the consent forms. Admitting the patient to hospice-in-place takes me about an hour. Once this is completed, I return to the ICU room to let the nurse know that she can begin administering morphine and Ativan and withdrawing other medications. The daughters are here and weeping silently; one son has left, and the other is staring out the window. I bring in extra chairs and encourage them to talk to their mother, to tell her anything they need her to know, as she may still be able to hear them and be comforted by their words. Then I withdraw to the nurses’ station to complete my documentation. Very soon the family comes out of the room; their mother has died. They thank me, and the older daughter says, “You were so helpful. It meant so much to us.” I worry my “help” was negligible. Sometimes the choice to finish the paperwork means spending less time at the patient’s bedside. Then again, some families prefer to have those moments alone together, to say goodbye. It can be difficult to know how best to give support.
I am sitting at the dining-room table with my parents and a hospice nurse, several years before I am to become one myself. The nurse is there to evaluate my mother, who has dementia, and to see if she qualifies for home hospice care. The nurse asks how much time my mother spends in bed and how much she is eating. My sister and I have advised our father to be very clear about how little our mother is eating. She would remain in bed twenty-four hours a day if our father would let her. He seemed to understand earlier why it was best to be honest, but now his pride in being our mother’s primary caregiver has gotten in the way, as we expected it would. He paints a picture for the hospice nurse of their happy household, where our mother eats everything he prepares for her, has “not really” lost weight (we have not weighed her, because she can no longer stand up), and is comfortable and cheerful. He pats our mother’s hand and says, “Isn’t that right, sweetheart?” Our mother sits slumped over in her wheelchair, bundled as always in a blanket, nodding at her lap. My sister and I have agreed that we will not dispute what our father tells the nurse, even if it means our mother will not qualify for hospice. This is exactly what happens, and it is another four months before she is reevaluated and we are finally able to get the help we need. The hospice team is gentle with her, calming her fears and treating her hallucinations and pain. They support my father as he comes to terms with losing his wife of sixty years.
When people tell me today how much hospice meant to their family, I know they are sincere.
Mr. Reynolds has lung cancer and is crying out in agony. He is receiving Dilaudid every three hours, which is not an ideal regimen for treating cancer pain. IV narcotics work blessedly quickly — in a minute or two patients feel a flood of relief — but the effect dissipates quickly. The patient may experience relief for an hour, then suffer two hours of misery until the next dose can be given. Hospitals are good at treating acute pain that will resolve itself in a few days, but not intractable pain that will end only with the patient’s death.
Mr. Reynolds wants to go home to die, and his wife and daughter have promised to get him there. Before he can leave the hospital, however, he will need an oxygen tank, a home hospital bed, and, most important, pain medicine that his wife and daughter are able to administer. I recommend to his daughter, Jasmine, that we bring Mr. Reynolds to the nearby hospice house rather than send him straight home. “You don’t understand,” Jasmine says. “This is my father, and I promised him we’d get him home.” I tell her I do understand, and that I want that for him, too, but caring for him at home will be very different now than it was before he came to the hospital. His pain will be much more challenging to manage. She replies that he has plenty of Percocet. When I explain he can no longer swallow pills, I see the situation begin to make sense to her. I recommend that we bring him to the hospice house for a day or two, to get his pain under control and to teach her and her mother how to care for him. Jasmine asks me to guarantee that her father will come home within twenty-four hours of being admitted to the hospice house, and I tell her there are too many variables for me to make any promises. He is very fragile and fast approaching the end of his life. She agrees for him to go to the hospice house, where he dies during the night. The following week my supervisor tells me Jasmine called to complain that I had broken my promise to her.
I am called to the bedside of a young ICU patient for a compassionate ventilator withdrawal. Carrie is in her early twenties and has been a mother for eight weeks without ever having met her son. She developed COVID pneumonia in the eighth month of an otherwise uncomplicated pregnancy. Like the flu, COVID is especially dangerous for women in late-term pregnancy, when their immune systems are less robust and their ability to fully expand their lungs is compromised by the baby. Carrie’s son was delivered by emergency C-section at her community hospital, and she was transferred to this hospital after experiencing respiratory failure. She has spent three weeks on a highly complex medical therapy that temporarily replaces the functions of the heart and lungs.
Carrie has a large family, all of whom are at her bedside, talking to her and telling her about her healthy baby boy. Pictures of him are taped all over the walls and windows of her room. The ICU nurse tells me that Carrie was holding her own until last night, but now she is “crashing and crashing fast.” She has multisystem organ failure; sepsis has debilitated her heart, kidneys, liver, and lungs to the degree that she has no reserve left to fight her infection. She is on multiple IV drips for blood-pressure support, and these medications are maxed out. She has suffered an anoxic brain injury from a stroke — a devastating complication of her COVID infection. Her family understands all of this objectively, but they are having difficulty accepting what it ultimately means for Carrie. As always, everyone is at a different stage of processing the news, and all are struggling with letting her go. Carrie’s mother, Ann, is her health-care surrogate and has tearfully signed consent for hospice. I have explained to Ann and several other family members the procedure for withdrawing aggressive care, and I have answered their questions. Ann sits in a corner, quietly crying. Everyone in the room looks exhausted.
I begin my physical assessment. The first thing I notice is that Carrie’s eyes are wide open — very unusual for a comatose patient. Then I realize that her eyes can no longer close due to the extreme swelling in her body. The nurses are keeping her eyes lubricated, but it is obvious that she is now also blind. Her C-section scar has already healed, her hair is beautifully arranged, and her fingernails have been lovingly painted. She has been receiving a powerful narcotic infusion for many days, and we will continue administering this medication after withdrawing life support.
COVID has made me even more aware of my inability to support everyone affected by a patient’s death: the dying person, the family, and the staff who are trying so hard. One of the most important gifts we give to families in hospice is our presence, but we have to move so much faster now, with so many new barriers between us, both physical and psychological. Worst of all, we’re getting used to it.
Once the ventilator is removed, Carrie’s entire family stands at the bedside, each with a hand on her body — all except for her mother. Ann has taken Carrie’s infant son to the car. When her daughter dies, she is holding the baby.
