My 83-year-old patient had outlived peoples’ expectations on several occasions. Faced with a critical illness three years ago, she underwent emergency surgery and spent several months in the hospital with a series of complications, including septic shock, renal failure, and hospital-acquired pneumonia.
I’d seen her in the office for a new visit soon after she was discharged. It took nearly 20 minutes to go through her history before walking into the exam room. Notes from several doctors during that hospitalization said that she might never become well enough to be discharged home. When I finally walked into the room, I expected to see someone frail, debilitated, with a caregiver answering most of my inquiries. Instead, she appeared robust, completely alert, and cheerfully answered my questions herself. “You look better than your chart,” I told her, truthfully.
Given the extent of her recent workup, we agreed to keep further testing and medication changes to a minimum. I established that we’d touch base in the office every three to four months — a typical interval at her age.
And somewhat to my surprise, over the next several years she maintained her independence, as well as her cheerful demeanor. While she did experience some setbacks — a hospitalization for pneumonia, or mild volume overload — she usually made it home within a week.
The last time I saw her in clinic was different. She had been hospitalized for nearly a month, with a series of problems including a declining ejection fraction, rising creatinine, and multiple infections. In my interview, she looked more fatigued and responded only in brief sentences. She had lost considerable weight and had difficulty walking. I knew from a growing body of research that these last two findings were very poor prognostically in her condition.
In this context, I suggested initiating home hospice. I explained that this would provide her with a visiting nurse, medications to alleviate her symptoms, and a general focus on keeping her out of the hospital. I also explained that I expected her survival to be less than six months. After a lengthy discussion with my patient and her caregiver, she agreed.
The following week, the hospice nurse visited her at home for an intake visit, and she sent them away.
This experience is not unique. Studies show that some patients with advanced illness are unwilling to use hospice. Further, even among those who initially agree, many reverse the decision when their condition worsens. A paper earlier this year by Russell and colleagues found that 30% of patients with heart failure on home hospice in New York City ultimately canceled hospice, most often because of worsening symptoms that led to an acute hospitalization. This process, termed “live discharge from hospice,” is over twice as common with heart failure compared with cancer.
The phenomenon may stem, in part, from the “peaks and valleys” characteristic of advanced heart failure, which stand in contrast to the slow progressive decline of metastatic cancer or dementia. Heart failure patients can experience dramatic improvement with a short course of intravenous diuretics — which relieve symptoms without influencing the long-term disease course.
And perhaps my patient was not ready to let go of the hope that this time, like many times in the past, she would improve. As her cardiologist, I also had to let go of my own notions about what was best in her condition. While my clinical experience informed me that her prognosis was poor, this was ultimately her decision to make.
Within one month, my patient was admitted again to the hospital with shortness of breath and was found to have progressive heart and renal failure. I was away at the time.
The inpatient team and her indefatigable primary care physician had multiple discussions with my patient and her (also indefatigable) caregiver about her condition.
They set expectations, given what was known about her disease, and she set dual goals of symptom relief and avoiding another hospitalization. After one week in the hospital, she was referred home with hospice, and this time she did not send them away when they visited. She was ready. Several days later, she passed away, supported, at home.
John A. Dodson is a cardiologist.
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