The Cost of Not Caring

23 Nov The Cost of Not Caring

By Stephen Miranda

By the time Lydia came to Pathways Hospice, she had suffered from several hospitalizations. I was her “companionship volunteer.” During my training I learned about the power of a volunteer visit, but I had my doubts. At nineteen, I hardly had the life experience, let alone the medical knowledge, to make a difference in her care—or so I thought. It turns out I had underestimated the power of human contact. After only a few months, Lydia was becoming more energetic and we struck up a vibrant friendship. It seemed that my visits promised the mental stimulation she longed for at her nursing home, and every day she appeared to be getting better.

Paradoxically, however, it was this improvement that ultimately took her life. Lydia was discharged from hospice. Her physician was no longer able to certify that she had less than six months to live. She was no longer eligible for hospice services, and I was no longer permitted to visit with her. That was the hardest part: I knew how much my visits meant to Lydia. Many weekdays I answered her worried phone calls, reassuring her I would be there on Saturday. How would she fare on her own, without family or friends to visit her? A few months later I had my answer. My volunteer coordinator called to inform me that Lydia was being readmitted to hospice. Her disease was worsening, but considering the progress she made on hospice, it was hard to believe that her newfound isolation wasn’t playing a role.

We define the value of care as the quality of that care in relation to its cost. But how do we measure the value of the care we don’t provide? Lydia died a few weeks after her readmission, and I was the last person she spoke to. I still wonder how the end of her life would have been different had she never been discharged from hospice. All Lydia needed was someone to check in on her. Who knows how many hospitalizations a friendship could have prevented— and the money that would have saved the healthcare system. In 2009, Medicare spent $55 billion on hospital bills during the last two months of life, with daily charges exceeding $6200. In comparison, Medicare spent $13 billion on hospice in 2010—$153 daily per person.

Of all the healthcare dollars spent on Lydia, could we have found a way to get her the help she really needed at home, to prevent her arduous hospitalizations? Instead, Lydia painfully made her way through a maze of providers to a skilled nursing facility, where the staff referred to her by her room number, and where few were invested in discovering what made life meaningful for her. While hospice certainly changed Lydia’s life, the impact was far too late. Is it really too costly to offer a patient-centered approach at all stages of the care continuum? It makes you wonder what the true cost is when a life hangs in the balance.

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Stephen Miranda is a medical student from the University of Rochester, who is now working as a research fellow at Ariadne Labs, a joint center for health systems innovation at Brigham & Women’s Hospital and Harvard T.H. Chan School of Public Health. His current work examines how end-of-life care can be improved for seriously ill patients

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