A Day in the Life of a Hospice Nurse
Helping Patients and Families through a Difficult Time
It is 8:00 a.m. Yanet (pronounced Janet), a registered nurse on VITAS' interdisciplinary team #137, is arriving at the home of her first patient of the day. She has been with VITAS Healthcare for three years. Other members of her team include four additional RNs, a physician, trabajador social, hospice aides, chaplains, voluntarios y duelo specialists, each making house calls as needed. Yanet and the other nurses are each responsible for about 16 patients, visiting around six patients every day.
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Before stepping out of her car, Yanet checks her smartphone to review the team's daily report. It is a roster of how many patients the team is responsible for, including who has been transferred to inpatient hospice units, who is new and who has passed away within the last 24 hours. One of her patients has died during the night, she notes somberly.
Her patients are at all stages of terminal illness. Although patients can be admitted to hospicio with a prognosis of six months, some of Yanet’s patients are admitted only weeks or days before their death.
Her first patient, a 91-year-old with chronic obstructive pulmonary disease, is a stately black woman who arrived in the U.S from Nassau in 1951. She's never married, has no children, lives alone. Her biggest worry is what will happen once she becomes bed bound. With no primary caregiver, Cecilia (all patient names in this story have been changed) is afraid she'll die alone.
Her house is cozy and spotless despite her illness and the long tube that trails from her nose to the oxygen machine that hums in the corner. A row of portable oxygen tanks stand next to it: testament to this woman's strong will to remain independent as long as possible.
But Cecilia is lucky; she has been "adopted" by a family at her church. Yanet asks if they have been by and Cecilia replies they have already called this morning to check on her.
Yanet pulls from her black roller bag her stethoscope and blood pressure machine. This is a routine visit; she will check vitals and make note of Cecilia's overall health. Each week Cecelia-and all VITAS patients-receive an average of 5.9 visits from various members of the interdisciplinary team.
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VITAS nurses caring for patients at home.
Yanet has been Cecelia's nurse for several months. "It's hard not to get attached to my patients," she says. "But I have to remembers why I'm taking care of them-they are not going to get well and I don't want them to feel afraid. But that doesn't make their deaths any easier."
Next Yanet pulls up to a beige home in a row of typical Floridian houses of pastel pinks, greens and blues. It looks like all the others, but in this one a man lies dying. His wife, still in hair curlers, answers the front door. In her 70s, she is getting ready for her day. She leads the way to the bedroom where her husband, Larry, sleeps in a hospital bed facing a window. A slight breeze blows the curtains and there is the sound of birds chirping. The quiet, pleasant room once belonged to the couple's sons.
Larry's skin is almost transparent and looks as though just a touch would cause a bruise to appear. He suffers from arteriosclerosis; his slight breath rattles from open lips. His tall frame is folded, knees up in the fetal position. To prevent pressure sores, a pillow is tucked between them. It reads, "I'd rather be fishing."
It is pressure wounds that Yanet has come to take care of. She pulls on pink gloves from a box on the bedside table and begins the slow task of redressing one on his heel and the other on his hip. The late stage of a terminal illness leaves patients in a fragile condition. Just lying in bed becomes hazardous, as a small pressure sore can quickly turn into a deep, threatening wound. Yanet will dress many such wounds during the day.
Cuidado de hospicio is about making someone near the end of life as comfortable as possible. Most people think the central focus is pain control, but personal and emotional care is a large part of what hospice nurses and aides do. Cecelia's needs are very different from Larry's, although both are hospice patients, both receiving "comfort care."
Patients may be anxious about the past, the present, the future. Family caregivers may be elderly and lack the strength or endurance to turn the patient or bathe or change them as often as they should. Although the nurses focus is on the patient’s diagnosis and related conditions, she’ll do whatever is needed to ensure that the patient is comfortable and safe, the family at ease and informed.
Driving to the next home, Yanet explains that sometimes it is the family that needs care. Family dynamics can include siblings who are in denial about a parent's condition or fear that hospice hastens death. "When a parent is dying, siblings are under incredible stress," she says. "They often don't fully understand what is happening or why no one can tell them when death will occur. This makes them nervous, afraid."
An Angel to Our Family
Next on her list is 95-year-old Gloria, whose four daughters are coping with their mother’s condition in very different ways. Debra, who is retired, takes care of her mother during the day until sister Sylvia returns home from work. Debra is quick to respond to Yanet's questions about Gloria. Judging from her mother's braided hair, polished nails and clean linens, Debra is taking good care of her. She has accepted her mother's impending death, unlike her sisters, some of who refuse to have anything to do with the hospice team.
For Debra, “Yanet is an angel, a counselor, a referee and a priest to our family.”
After administering to Gloria, Yanet takes time to hold her hand and speak softly to her. It is a private moment between nurse and patient. As with other visits, Gloria tells Yanet that she's ready for God to take her-she's ready to go.
Throughout the day, while driving and during home visits, Yanet gets phone calls about other patients. In fact, she can get as many as 50 phone calls in a day, which she juggles along with patient care, family conferences, driving and paperwork. Her phone calls may be from physicians, the pharmacy, or family members who want to speak only to the hospice nurse.
Carol is a new patient Yanet is seeing for the first time. Initial visits take more time, since there is much to discuss. Yanet pops her car's trunk; inside it looks like a hospital supply closet, filled with adult diapers, disposable mattress pads, bandages, antiseptic sprays and much more. Hospice patients receive all the medical supplies related to their terminal diagnosis they need, and each week they are replenished. Yanet selects a variety of supplies and packs them in a plastic bag.
Yanet finds Carol in an awkward position in her bed. As she checks a wound on Carol's hip, she discovers her patient's diaper hasn't been changed since she arrived home from the hospital earlier that morning Yanet sets about her work gently, but with speed and efficiency. She checks vitals, dresses wounds and changes the diaper. She calls Carol's son, Robert, into the room to help her place Carol in a more comfortable position in the bed.
Experience has taught Yanet to choose her words carefully when talking to a family new to hospice. Back in the living room, Julia, Carol's daughter, listens, rubbing her arm where bandages are evidence of a recent visit to her own doctor. Creases in her face reveal that the finality of her mother's condition is only now becoming a reality. Robert doesn't look up from texting, yet he stays in the conversation.
Yanet explains the importance of keeping their mother clean and dry at all times. Julia mumbles that she doesn't think she's capable of caring for her mother. When Yanet suggests a nursing home, both Julia and Robert shake their heads no. Yanet reassures Julia that a hospice aide will be by the next day and can teach Julia everything she needs to know about personal care.
Yanet reviews Carol's medications and writes the times they are to be given on the outside of each bottle in black marker. She writes important hospice team phone numbers and the Telecare® number on the outside of Carol’s home chart, letting the siblings know they can call these numbers night and day.
An hour later and after one last check on Carol, Yanet leaves. Yanet has seen similar situations where adult children must make the difficult decision about how to care for an elderly parent who was once independent but is now bed bound. Julia will need some extra support, Yanet decides, and she calls the team social worker to give her a heads up.
Making Patients Feel Special
Pulling into a shady parking space for lunch, Yanet takes this time to return calls. While she eats, the hospice aide on her team calls to ask if Yanet can visit Pedro, a patient not scheduled for today. He is very weak and the aide is concerned. Yanet says she'll come, and calls the next scheduled patient to get permission to postpone their visit until tomorrow.
Flexibility is key in hospice care. No one can predict the path disease will take.
Yanet hears the dog's large bark before even getting out of the car, but the dog is confined to the porch. A slight woman in her early 20s ushers Yanet inside, which, like a beehive, is filled with activity and noise-dogs barking, a baby swing clicking, music playing and the voices of visitors elevated to be heard above the cacophony.
Yanet proceeds through the crowded family room into Pedro's bedroom. Silence envelopes those in the room when the door shuts. Pedro, 75-years old with advanced liver disease, lies in a queen-size bed, covers pulled up to his neck. At the foot of the bed are his wife, Maria, and the hospice aide. Yanet sees immediately that Pedro's condition has worsened since last week. Just days ago he was sitting up in a recliner in the living room, talking and very animated. Today, he can hardly speak. The aide explains to Yanet that while getting a bath, Pedro became very weak and complained of pain.
Yanet leans down and speaks to Pedro. She takes his blood pressure and puts her stethoscope to his chest. She asks Maria about Pedro's pain medication, then gives him a little more to make him comfortable. Yanet suggests that before he gets a bath, Maria should give him the medication. As Yanet explains that Pedro's condition will be changing every day, an intimate look passes between this couple married for 25 years. It is one of sadness, recognition, acceptance.
Enormous audio equipment fills the front room in the home of Yanet's next patient. It belongs to the patient's primary cuidador, her son, David, who is a DJ. He resumes his work as Yanet goes to a bedroom in the back of the house.
Iris, a thin and fragile 60-year-old, no longer speaks, but her big, bright eyes communicate her happiness at seeing Yanet. Suffering from advanced Parkinson's disease, Iris can still sit up and watch movies on her laptop. Her long, slender fingers slide slowly over the mouse pad on a portable table across her lap.
Yanet speaks cheerfully to Iris as once again the pink gloves go on and she goes about the business of wound care, diaper changing and taking vitals. Yanet tries to do special things for all her patients. She knows that the simplest things let a patient know they are loved. In Iris's case it's the chocolate-flavored nutritional drink Yanet brings her, and a spritz of Iris' favorite perfume, Paradise.
Although Iris is her last patient of the day, Yanet's workday is not over. She pulls into a nearby parking lot where she spends the last hour and a half of her day doing administrative work. She checks messages, returns calls, inputs her time into the payroll system from her phone and takes care of other patient-related tasks. Some days she goes to the pharmacy to pick up medications for patients unable to go themselves. Today she tries calling the son of a patient who 's been leaving messages for her. She doesn't reach him for a second time today. She calls the team physician to set up a visit requested by one of Gloria's daughters. She calls the team social worker to let her know how the first visit went with Carol and her family, and she calls the hospice aide assigned to Carol to make sure she is scheduled to visit the next day.
Yanet will pick up her three daughters from her mother's house around 5 and go home to make dinner, help with homework and put the girls to bed. After a few hours watching television with her husband, she's in bed by 10. Hospice nurses like Yanet play a very important role in the lives of their patients. They ensure that as the end nears, the patient will be comfortable and maintain dignity. And, that as the patient and family enter this final transición, they will not be alone.