COLUMBIA — Dorothy Rainwater carries a closeable clipboard and two 3-inch binders exploding with papers into the office on a Tuesday morning.
Overnight paperwork sits on her desk. She reads through it quickly. The other hospice nurses are strolling into the office, chatting, laughing and discussing the day ahead.
Despite the noise, Rainwater’s eyes never leave her reading. When she finishes, she goes to speak to last night’s on-call nurse.
She learns that one of her patients has died. She pulls the patient’s binder out of a storage locker filled with identical binders.
She brings the binder to her desk, flips to the appropriate page, and writes, “Patient died peacefully at home with family present.”
This is the beginning of her day.
Rainwater, 65, has been a nurse at Hospice Compassus, 3050 I-70 Drive, for three years.
A registered nurse, she worked at University Hospital as a medical and surgical nurse for 15 years – a job that prepared her for what she would see as a hospice nurse.
For Rainwater, illness and death have become commonplace. And she has learned to draw a necessary line in her life between professional and personal.
“You go into the whole thing with the knowledge that this is all going in one direction,” she says. “The day is going to come when the patient is going to go on.”
Like the patient who died during the night.
Rainwater had visited that patient the previous day as part of her routine rounds. Her day starts at the office, scheduling visits and preparing paperwork. Then she spends late morning and all afternoon visiting with patients, usually four or five a day. How often she sees each patient depends on the circumstances.
Hospice Compassus takes a team approach: home care aides, chaplains, social workers, volunteers and nurses work together to care for patients and keep each other informed of patient needs.
Home care aides tend to basics such as bathing or changing bed pads. Chaplains help patients and family spiritually as death nears.
Social workers deal with emotional and psychological issues about death; they also schedule visits with families after a patient’s death. Volunteers visit patients simply to talk and provide company.
The nurses are in charge of monitoring the patient’s physical condition, recommending medicines, and at core, controlling pain.
When a patient’s deterioration becomes severe, nurses such as Rainwater visit more frequently. When a patient dies, even as Rainwater continues her rounds of visits and paperwork, the death stays with her all day.
In this latest case, the patient had been sleeping a lot more than usual and frequently had a fever. The day before Rainwater had asked if the family wanted her to return the next day, and they agreed. But that evening, the woman was gone.
Now, in the office, Rainwater receives a call from the woman’s doctor, asking about a fax sent the Friday before. Rainwater’s voice is quiet as she tells the doctor the patient has died.
Both doctor and hospice nurse are responsible for the patient’s health, but while doctors strive to keep patients alive, the hospice nurse focuses on keeping patients comfortable as they die.
The idea of formalized hospice care was accepted into mainstream medical care in the United States only in the past 20 years.
The term “hospice” was first applied to specialized care for dying patients in 1967. States were given the option of including hospice care in their Medicaid programs in 1986; it became a nationally guaranteed benefit in 1993.
Hospice Compassus patients pay for their care through Medicare, Medicaid or private insurance. While circumstances vary, typically hospice comes into play when a patient with a terminal illness is expected to die within six months.
Accepting that someone is dying is difficult. With today’s technology, it seems there is always another machine, treatment or pill that might keep a person alive a little longer, if not cure them. But sometimes that is not the best option, so patients or their families accept that it’s time for hospice.
A day spent with Rainwater is a day spent with four patients who come from vastly different places but now have reached a similar place. Their families are protective of their privacy and what dignity they can provide, so they declined to share names or photographs.
But who the patients are is not really important because they are everyone. They have been brothers, sisters, sons, daughters, husbands, wives, fathers and mothers.
One has two grandchildren at MU. One hospice patient was an environmental scientist, another a professional tennis player. One just celebrated her 99th birthday. One loves watching “The Real Housewives of Beverly Hills.”
Some are surrounded by family while one seems very alone; she won’t write down a single family member for anyone to contact – if she even has anyone to contact.
Rainwater works with them at some of the most intimate moments of their lives, yet they remain part of her professional world.
Death has already put an expiration date on their relationship when they meet. Neither knows when that date will come, but they both can guess.
Adhesive notes for needed supplies
Rainwater finishes her paperwork on this Tuesday morning and gets into her car to drive to her first patient visit.
But before going into the patient’s home, there is more paperwork — a log of mileage from visit to visit; charts to log vitals such as blood pressure and pulse; and space to note any changes in patient appearance, behavior and mood.
Her first patient is sitting at the kitchen table watching “Top Chef” on a TV across the room. A rolling walker stands next to her; the first shelf is stacked with a lantern, a book and some pills in a Ziploc bag.
A grocery bag holding other essential items hangs off the handle. An oxygen concentrator mechanically inhales and exhales, snaking oxygen to the patient through a tube. She politely asks Rainwater to heat a cup of coffee for her as they discuss her medicines.
The patient will soon run out of her current prescriptions. Rainwater pulls an adhesive notepad out of her pocket, writes down the necessary pills and makes a note to have them delivered to the patient’s house.
Then she checks the woman’s blood pressure and pulse, listens to her lungs and abdomen, takes a reading of the percentage of oxygen in her blood and observes her overall condition.
The patient has gotten a lot weaker in the time Rainwater has been seeing her. When the woman first came to hospice, she was perky and spunky; she even cooked her own meals.
“I thought, this could be one that will get better and go on,” Rainwater said later. “But in the last four to six weeks, I’m noticing a decline.”
The patient used to dress for Rainwater’s visit, putting on a nice blouse and fixing her hair. Now she stays in her nightclothes.
Rainwater goes through her checks in about 20 minutes, and it’s time to go. The woman chats a bit about reality TV, then about the dramatic World Series between St. Louis and Texas.
She’s always been a Cardinals fan, she says, but, “I did feel bad because Texas has never won it. Everybody ought to win at least once.”
Rainwater restates the prescriptions once more to make sure they are correct. She drives to the parking lot of a nearby Home Depot to finish filling out her charts. It takes a good 20 minutes to fill out paperwork after each patient visit.
“I spend more time on paperwork than I do with the patient,” she said.
The charts cover a range of categories: pain, neurological, respiratory, cardiovascular, musculoskeletal, gastrointestinal, renal/urological, integumentary, immunological/hematological, endocrine, spiritual, psychological, health management, bereavement concerns and safety. There is a section for additional observations and comments.
Rainwater is interrupted by a call from her second patient’s wife, asking for more supplies. Rainwater makes a quick note on the adhesive notepad she always keeps in her pocket. More adult diapers and wipes.
The hospice company keeps these items in stock at the office and provides them to patients. Rainwater detours the minivan to the office for a quick stop and then drives on to see her second patient.
From a mangy dog to human health care
He sits in a leather recliner in the family room, watching ESPN. Two dogs greet Rainwater at the door. She has three of her own dogs at home; all three are rescues, and one is blind.
The patient’s wife gets in a hello after the dogs calm down. The patient looks over from his leather chair in the family room and says a brief “Hi” before returning to ESPN. He continues to watch as Rainwater checks his vitals.
He says he likes her. She doesn’t dilly-dally. She does her job and leaves.
The third stop of the day is at a nursing home where two of Rainwater’s patients live.
Patient No. 3 is asleep in a wheelchair when Rainwater walks into her room. She says a loud “hello” to see if the woman will wake, then calmly begins her work. The woman remains slumped asleep as Rainwater takes her vitals.
Nursing wasn’t her first career direction, but she seems a natural caretaker. She became a veterinary technician after rescuing her first dog in her late 20s. At the time, she was working for a box manufacturer in St. Louis, and she saw the mangy dog on a lunch break. It looked so pitiful, and she wanted to help it.
Rescuing the dog made her want to become a vet tech, and she graduated from vet tech school in 1978. Working with animals suited her, she says, but she never married, and a vet-tech’s salary wasn’t enough to support the life she wanted and build some savings.
She owns 10 acres northwest of Columbia, does all of the yard work and takes care of her three horses, three dogs and four cats.
She went back to school to study nursing, graduating in December 1994. She worked at University Hospital for 15 years, but the fast-paced hospital environment didn’t give her time to get to know her patients, she said. If one of them died, she could hardly mourn the loss because she never felt like she knew them.
As a hospice nurse, she knows her patients so much better.
Patient No. 3 continues to sleep through the visit. On a good day, Rainwater said, the woman wheels around the nursing home in her chair. She will follow Rainwater around, and sometimes Rainwater has to dodge her to see other patients. Today, she just sleeps.
“Happy 99thBirthday” balloons float above the woman’s bed. Their anchoring ribbons were once taut, but that was at least a week before. The balloons now drift and droop, slightly deflated, but reminding her that someone loves her enough to bring her balloons.
A birthday card stands open on her dresser. Behind it is a collage of her life with photos of family and friends. Some are old black-and-whites; some have a 1970s’ color tinting with blurry edges and scratches. None look new or glossy. All hold stories of a past life, a life before the nursing home, before she couldn’t remember why she is there.
After taking the patient’s vitals, Rainwater goes to the main nurse’s desk to check a binder that monitors the patients’ bowel movements. Painkillers can cause constipation, so the nursing home staff notes when patients use the restroom. She also checks the patient’s daily chart in case she needs new prescriptions.
Throughout the day, she keeps checking her cell phone for any emergency calls. None so far, thank goodness.
But, “Who knows?” she said. “It’s only 3 o’clock; everything could still fall apart.”
‘Death gives real clear signals’
As Rainwater walks down the hallway to see her fourth patient, she passes the rooms of other residents, identified only by the nameplates on their doors: Clara. Madge. Lottie.
She outlines what to expect: Patient No. 4 has an extreme eating disorder. She doesn’t eat more than a thimbleful of food each day; judging by her condition, she has probably been doing that for as long as 20 years.
But that’s just an educated guess because the patient doesn’t share that information. Rainwater explains that the woman’s metabolism must have adapted to the scant intake of food over a long period of time. Otherwise, she wouldn’t be alive.
Elmer. Shirley. Harold. Enid.
Finally, the patient’s room, a double, shared by two women. At first, it’s hard to tell there is anyone in the bed on the right.
The woman lying there is almost invisible, barely a ripple in the covers. Only her head and a glimpse of a bony right shoulder poke from under the blankets. Her purse and coat are in the bed with her.
She watches TV — “Rachael Ray’s 30 Minute Meals” — as Rainwater listens to her lungs, then takes her pulse. The muscles in the woman’s legs are atrophied and permanently bent from lack of use. Rainwater can count the woman’s teeth when her mouth is closed because there is no fat on her face.
The patient asks about an ice machine. Rainwater says she doesn’t remember one in the building, but adds, “I’m just glad to see that you’re looking better.” She touches the woman’s hand – a subtle reminder that she is not alone.
As she always does before she leaves, Rainwater checks the patient’s charts: she needs new prescriptions. Rainwater then goes to a private room in the nursing home to do the requisite paperwork.
Despite her shocking appearance, Patient No. 4 was looking better today. Her complexion was a pale gray color, but it’s normally jaundiced, Rainwater said. And she actually smiled, which is uncommon. It’s good that she was looking better, but that can also be the last rally for a patient.
“Death gives real clear signs,” Rainwater said. “It clues you in.”
Prayers for the living
Back at the office, Rainwater makes copies of her notes. The originals go in each patient’s binder; the copies go into her work binder.
She files new prescription orders and gives it to the hospice team leader to put into the computer. She gathers the extra adhesive notes from inside her clipboard and disposes of them in a special receptacle. They have patients’ names on them; she can’t throw them away in any normal garbage can.
It’s 4:38 p.m. and the office phone rings. Rainwater glances at it with trepidation. A colleague answers, and she relaxes — it’s not one of hers.
The night on-call nurse starts at 4:30 p.m. All of the nurses do updates on their patients by leaving phone messages or “call reports” on an answering machine. The reports alert the on-call nurse to any health issues that might be problematic that night.
Even though the on-call nurse is already on the clock, Rainwater always waits until she is in her car to do her call reports. She says it’s because of Murphy’s Law, which states that anything that can go wrong will go wrong.
She doesn’t want to do her call report early and then get a call from a patient with an emergency.
“If you call report now, something will fall apart.”
As she drives home, she will still be thinking about the patient who died the night before. She thought about her all day. But she didn’t call relatives because she knew they would be busy with family coming from out of town and the demands of planning a funeral. Spending time with her other patients comforted her because at least they were doing OK that day.
She will go home and only pray for her patients who are still alive because she knows that her dead patient is in a greater place. She says knows this because she is a Christian and she couldn’t do her job without believing that there is something better than this world.
So she prays for them while they are alive and thinks about them once they are gone.
But she doesn’t think about them for too long. Her work life and home life need to remain separate.
She will say a quick prayer for them and then go outside to feed the horses, play with the dogs or just pull the crabgrass.