Caring for the Caregivers

bill reid

By Bill Reid, SVP of Product Management and Partners, SCI Solutions

Early in my career in health care, a wise colleague said to me, “You know, everyone working in health care has a story about why they work in health care.” For most of us working in this profession, we are motivated by experiences we have had in our lives with health and illness. It makes us do what we do for a patient, a practice, a profession and industry. My story is as follows.

She was 45 when she died. She had fought a two-year battle with what was initially diagnosed as Stage 4 ovarian cancer. During that period, she experienced several rounds of chemotherapy, surgeries, radiation therapy, had to go on parenteral nutrition due to an abdominal obstruction and adhesions in her bowels. In between those major therapeutic events, she saw many providers – her OB/GYN, several oncologists, radiation oncologists, surgeons, therapists and dieticians. She had DME in the home – pumps for nutrition, for hydration, for pain medication. She went from fighting and denial, to acceptance and enrolling in hospice. She died in her bed at home, surrounded by friends and some family, where she liked most to be, looking out her big bedroom window on the crabapple tree that was planted when the house was built. Her name was Janet Reid, mother to two boys.

What was striking is that she was surrounded by people who helped coordinate her care. Friends included a hospice nurse, an insurance expert and a grief counselor. We all took on roles. Mine was bills – sort through piles and try to make sense of what we owed, or what was owed us.

Consider that my mother, prior to her illness, was the office manager for the family medicine practice in town. She ran the practice. She was an insider.

Yet, what many of us have experienced, and this was no exception, is that you still don’t really know how it all works until you travel through it. We all touch this business in a parochial way. What I mean is that most of us work in one small part of the health care universe. We are like planets in that universe – traveling in our own orbit. Patients and their families are like space explorers – they travel through it – across time and space, across orbits and visit planets. They see more, live more, of what we have created and administer, as they rocket through.

This past July, the AARP Public Policy Institute issued a paper entitled Valuing the Invaluable: 2015 Update. They reported that in 2013, about 40 million family caregivers in the United States provided an estimated 37 billion hours of care, and that this estimated economic value of unpaid contributions was approximately $470 billion, and increasing over time. I found it striking how it seemed that to most of the payers and providers, these people were ignored and there was little appreciation for their role in the care coordination and caregiving they provided. Family caregivers “…were often considered ‘visitors’ or an ‘afterthought’ rather than the crucial participants in their care recipient’s care.”

Here is where it gets even more interesting. The majority of caregivers are employed either full or part-time. Sometimes the caregiving demands are so significant that they are forced to leave the workforce – where “estimates of income-related losses sustained by family caregivers ages 50 and older who leave the workforce…are $303,880, on average, in lost income and benefits over a caregiver’s lifetime.” Furthermore, “it has been estimated that U.S. businesses lose more than $25 billion annually in lost productivity due to absenteeism among full-time working caregivers” and that rises to $28 billion with part-time workers added in. It is costing our economy dearly.

If we have any hope of bending down the cost curve for care, with an aging demographic, we have to begin to think about what we are going to do to enlist these volunteers – these family members – and help them not waste a moment of their time. We have to ask ourselves how we “hire” them to work alongside us as we all tackle the coordination of care of patients. Do we treat them as visitors, or as team members? Do we help them get their work done so we can get our work done? Do we make tools for them to be more efficient in their role? Is there a seat at the table and are we inviting them to join us?

I was one of these family caregivers. I was on a team of family and friends all helping Janet navigate the universe of her care. We had no tools. We had to elbow our way into meetings and, yes, we had to leave when visitors’ hours were over.

As we go about fashioning a better system of care, let’s not forget the 40 million volunteers who want to help, and let’s design them into the solutions. Let’s remember to care for the caregivers.

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