Portal de Periódicos da CAPES

Comfort of Home

2016; Wiley; Volume: 64; Issue: 1 Linguagem: Inglês

10.1111/jgs.13891

1532-5415

Paul Rousseau,

Gender Studies and Social Issues

“I long, as does every human being, to be at home…” Maya Angelou, Poet “Doctor, this is Don. Can you come and see her?” I looked at the clock: 2:00 a.m. It was chilly outside, my bed was warm, and the morning was still 3 hours away. “She ain't lookin' good, doctor. She can't catch her breath.” “Did you give her some morphine?” I asked. “That's for drug addicts, doctor. I gave her all her inhalers and the nebulizer. They ain't doin' nothin.' She needs to see ya, doctor.” “She” was Betty, an 86-year-old woman with end-stage chronic obstructive lung disease secondary to years of smoking unfiltered cigarettes. I had become close to Don and Betty during their many visits to the palliative care clinic and had given them my personal cellular telephone number. She had been hospitalized three times the past 6 months, but the last one had taken a toll: 60 days, three bedsores, a bout with Clostridium difficile colitis, and two stays in intensive care, much of that on a ventilator. Still she persevered. In fact, she had refused hospice when discharged, stating, “They just give you morphine and kill you. They're the real Angels of Death. I ain't there yet.” It would have been easy to tell Don to take her to the emergency department; after all, she was a full code, and wanted “everything done,” but getting from their rural home to the big city hospital in a worn-out truck with bald tires would have been difficult, and they didn't believe in calling 911 unless it was a true emergency. Yet I admired them. They were stoically independent and of the generation of hard work and self-reliance. They had hands like sandpaper, sun-baked wrinkles as deep as rivers, and a language born of hard times—they were genuine and of a character that is rapidly disappearing. “She's refusin' to go to the hospital, doctor. She says she wants to stay home. Can ya come?” “I'll be there in 30 minutes,” I tell him. “In the meantime, just try giving her a small dose of morphine, 2 mg or so. It's the first line on the dropper—fill it to the first line.” “We'll see ya when ya get here, doctor.” I sighed. There would be no morphine for Betty. Although home visits are not a routine part of our program, I revel in visiting a patient at home—just not at 2:00 in the morning. You can learn more in 10 minutes in a patient's home than you can in 10 years of office visits. A home visit allows a physician to become intimate with a patient and to learn what's important and what's not and how they live, not how we think they live or how we want them to live. When I arrive at Betty's house, the front door swings open and Don greets me with a wave and a hesitant smile. “Glad ya made it, doctor. Thanks for comin'.” As I enter the house, I notice the layout of the furniture. A chair here, a table there, a stool to the side—the handrails of the home, strategically placed so Betty could walk without fear of falling. I then see an oxygen tube snaking down the hall, and follow Don, and the tube, to Betty. She's sitting in a worn recliner with Griffin, the cat, by her side. I pull up a chair and sit next to her. She takes a breath, then speaks with rattles and wheezes. “Hi, doctor, sorry to have ya come out so late, but Don, he worries so.” I find out she has caught a cold the past few days, and now she is more short of breath and coughing up thick phlegm. I pull out my stethoscope and listen to her lungs, her shoulders protruding through a wasted body, but like with most emphysematous people, I can hear little. I move to her heart. She is tachycardic but no more so than usual. I tell her it is probably bronchitis, but without a chest X-ray, I can't be sure she doesn't have pneumonia. “I ain't goin' to the hospital, doctor.” “I know,” I tell her. “We can treat you with an oral antibiotic, and see how things go over the next 24 hours, but I also want you to know the hospital is an option.” I let her think for a bit, and as I do, I look around the living room. There are mementos of a life lived: photographs, quilts, a grandfather clock tick-tocking in the background, a collection of glass elephants, and a pillow with December 22, 1950, on it—the date of their wedding. This is a home. It's then that I decide, once again, to address her goals of care. I begin by asking what is important to her and what she wants to accomplish in her remaining time, and there, in the comfort of her home, in a cocoon of safety, she surprises me. She looks at Don and says, “Don, I'm tired.” “Now Betty, don't you go talkin' like that. Doctor, she don't know what she's sayin'.” “No, Don, it's time, I wanna stay home with you and Griffin, I'm tired—tired of doctors' offices, tired of goin' to the hospital, tired of bein' this way. I wanna be as comfortable as I can. It's time Don.… It's time.” Don started pacing back and forth, rubbing his hands together, his eyes frantic and pleading. “Doctor, don't you listen to her. She don't know what she's sayin'.” “I think she knows what she's saying, Don. She's saying time with you and Griffin is more important than time at the clinic or the hospital, more important than anything in her life.” “Don, it's what I want. I just wanna be with you and Griffin.” Don bent down and grabbed Betty, tears collecting in the corner of his eyes. “It'll be all right, Don. This has been comin’. We both knew it, but you'll be all right, and I'll be all right.” “I'll do what ya want, Betty. I don't agree, but I love ya, and I'll do what ya want.” It was hard for Don to let go of a woman who had been both pillar and partner for 65 years. I stayed with them until 6:00 a.m., hearing story after story, and crying when they cried. Once daylight broke, we called their two daughters, who seemed relieved that their mother had finally chosen comfort over crises. I then called a hospice that Betty had heard about, and they promised to visit that morning. Conflict of Interest: The author declares no competing interests. Author Contribution: Dr. Paul Rousseau is the sole author. Sponsor's Role: None.