If you work in hospice care you already know the word hospice itself carries an almost universally negative connotation. It’s viewed by most as the last stop. Although the benefit of hospice care has gained wider understanding among both the public and medical community in recent years, it’s true value is almost always understood in hindsight.
Recently, I read a New York Times article that told a story about hospice care in a completely different light. In the case of 76 year old Californian Sarah Kyung Lee, hospice care was embraced as a refuge or shelter from the onslaught of aggressive treatment she was caught up in. Patients regularly forego aggressive therapies for hospice care for many reasons, but the difference in this case was that her physician son, who knows well the “vast machinery of the hospital,” felt that his mother actually had a good chance of recovering if given the opportunity to be cared for with minimal intervention.
Did you read that carefully? Her son, Dr. Lee, was embracing hospice care as a way for his mother to recover, not die peacefully.
Mrs. Lee had undergone two heart valve replacements and was on a blood thinner. She’d suffered two strokes and had high blood pressure. The stress of a recent accident kicked off an episode of recurrent atrial fibrillation, sending her heart rate to dangerous speeds. She developed delirium, as many hospitalized older people do.
Placed in a transitional care unit, “she had all these lines to monitor her heart, IVs in case they had to give her additional meds,” Dr. Lee recalled. Aides interrupted her sleep for blood tests before dawn. Fearful that she might fall if she tried to get up to use the bathroom, doctors inserted a urinary catheter.
He (Dr. Lee) had the expertise to know that atrial fibrillation could reverse itself. “We wanted to give my mother a chance to get better,” he explained. “In a week, there was a good chance she could snap out of this.” But he also knew how hospitals function.
In an effort to take control of his mother’s recovery and shelter her from a seeming endless cycle of medical intervention, Dr. Lee asked for hospice care. The palliative care team at the hospital agreed that Mrs. Lee had better than 50/50 odds of dying within six months, the prognosis required for enrollment. Yet, Dr. Lee was clear with the physicians that he believed his mother would recover if given the chance. As he put it, he felt she would “graduate from hospice.” He believed, “These were all problems that with time could get better.”
Once hospice care was initiated, the change was immediate. All traces of aggressive care ceased as they prepared to discharge Mrs. Lee to her home. Even on the day of her discharge nurses found evidence of possible internal bleeding, a discovery that would have normally prompted possible naso-gastrcic tube insertion. But because Dr. Lee had invoked the h-word, no such interventions were carried out. Mrs. Lee spent the next four weeks under the watchful care of hospice as she recovered and was indeed discharged alive and well.
As the article points out, “hospice is not designed to care for those expected to recover,” and I’m not suggesting necessarily that it should regularly encompass the care of patients like Mrs. Lee. But the intervention of her physician son and his decision to utilize hospice care as a sort of shelter from the medical storm brings up interesting questions. In a healthcare environment where hospital policies and systems are often at odds with the needs of complicated elderly patients, it seems Mr. Lee felt the only way to insure the most personalized, least-invasive care for his mother was in effect to “take her home to die.”
“Invoking hospice allowed me and my sister to relax and have some confidence that the care she was getting was what she needed.”
We see time and again where patients who receive hospice care, particularly those with chronic conditions such as COPD and CHF, actually improve somewhat on hospice before the disease takes its full toll. At the same time, we see patients who are discharged from hospice care due to their condition stabilizing or improving, only to see them decline quickly thereafter once the regular care and attention of hospice is removed.
Mrs. Lee’s case brings a new dynamic of thought to the benefit of hospice care. Maybe we shouldn’t be thinking of it as the last stop after all. What do you think? Should hospice care be considered in cases like Mrs. Lee’s when the chance for recovery is good?