It was the hospital doctor who first said the word “hospice” to us, during a phone call with my husband. This was at night; the doctor sounded young, tired, and brusque. “Have you considered hospice for your mother?”
“What? No!” my husband said firmly.
His mother was in the hospital again, with some kind of infection — kidney? Pancreatitis? They never quite figured it out. Antibiotics seemed to be helping. She’d lost a lot of strength and would go from the hospital to rehab as she had several times before in the last couple of years. She wasn’t dying, though, was she? Why in the world would she, or we, consider hospice?
Our previous hospice experiences with three parents and step-parents had taken place during the last week of life. Each person — two in hospitals, one at home — had been clearly dying; hospice care made this process less painful. My husband’s mother was not yet at this stage. She could still sit up and talk with us, ask how our work was going, enjoy photos of the grandchildren, read the newspaper, complain about how often the hospital served carrots. Over the past year she’d been in the hospital and rehab almost as much as she’d been at home. She hated it. She was starting to refuse treatments and medicine. Whenever someone came to draw blood she would refuse verbally and would sometimes take a swing at a nurse. “I’m 92 years old,” she had started to say, “and I want to die at home.”
But we still thought the hospitalist who had mentioned hospice was being premature and, frankly, insensitive. We shared our indignation with my mother-in-law’s regular doctor and also with the nurse who had for some time been arranging home-care aides. They were not as shocked by the word as we had been. They both said, gently, that we should keep an open mind. Meanwhile my mother-in-law had gone from the hospital to rehab. She was there for a month and made only very limited progress. Then she went home, and within 24 hours she was back in the hospital with congestive heart failure and pneumonia. All the systems were breaking down. She was asleep most of the time. When she was awake she said repeatedly, “Get me out of here.”
Over the next week my husband talked with several doctors and nurses to try to get a better understanding of hospice care. What he kept hearing from them was that contrary to what many people think, hospice wasn’t just for the last few days of life. “The earlier they can get involved, the better,” one doctor said. We learned that the Medicare standard for hospice care was a life-expectancy of six months, in the judgment of the person’s doctor. Even this was hard for us to accept, especially since there was not a particular terminal illness that was killing her. We had not been thinking in terms of months; we’d been hoping and assuming that she might live for some years yet.
But she was ahead of us. “No more hospitals,” she told the palliative care doctor who came to see her in the hospital after she’d refused yet again to have her blood drawn. “I want to die at home.”
What she needed was something in between the hospital model with its mission of fixing things and what we had always thought of as the hospice model for the very end of life. Was there a kind of in-between care that would stop all the hospital interventions, which were exhausting and weakening her more than they were helping her? Yes, there was. And it was hospice.
The word had scared us, but the concept and the services turned out to be just what she needed.
She went home. She got to be in her own bedroom, surrounded by her things. She relaxed. The hospital-induced confusion and disorientation subsided. She enjoyed visits and calls from family and friends. She watched the sunsets through her own window.
This is not to say that the next few months were easy. She was declining, slowly at first and then more dramatically. The hospice nurse provided supplies and the limited medications that kept her comfortable, as well as perspective and reassurance for us and the aides who cared for her. She slept and eventually became unresponsive. Her body slowly shut down. We were sitting with her when she died.
We understand now that the word “hospice” means more than just care for the last few days of life. My mother-in-law needed to be released from the futile round of hospitalization followed by rehab followed by more hospitalization. She wasn’t yet actively dying, but she was no longer fixable. She didn’t have much control left over anything. But she wanted a say in how and where she lived the rest of her life, and hospice allowed her to have it.
Joan Wickersham is the author of “The Suicide Index” and “The News from Spain.” Her column appears regularly in the Globe.