The parallel world of hospice care

My grandmother recently went into hospice care. At 94, she has lived a longer, richer life than probably most of us will ever hope to. Given the nature of the work I do, end of life care is not a topic I’m unfamiliar with. Initially, I spent a lot of time asking my mother probing questions about the care my grandmother was receiving. I imagine I did this partly out of habit, but it was also a convenient device to postpone thinking about the situation on a personal level. It’s very surreal to think about a loved one in such a strange sort of in-between space between life and death.

For those following health care topics, I don’t need to tell you that discussions about end of life care have become quite contentious. The rancorous debates, both emotionally and politically charged, have yet to lead to a suitable approach to managing this vulnerable population.  As a result, a circumstance that is already difficult is often compounded by less than optimal transitions of care, a lack of clear, consistent communication, and inadequate reimbursement for providers delivering care to these patients and families.

My grandmother lives in Florida, so it’s not possible for me to see her and she’s not coherent enough for a phone call, so I decided to write her a letter.  When I sat down to write it I found I had considerable writer’s block.  I struggled to find the appropriate thing to say someone in life’s interstitial space.

Ultimately, I decided to also to include with my letter some selections of poetry that my mother could read to her. I surprised myself in coming up with this plan since I’m not exactly a poetry person. But, I dug out some old books from a college poetry class and set out to find something appropriate.

I ended up assembling a rather diverse compendium from a variety of poets including Whitman, Dickinson, and Emerson. Some of the pieces were about life, some about death, and some about other things entirely. From this collection of a dozen or so poems I sent along, the one that resonated most was, oddly, A.A. Milne’s Halfway Down. Although the poem’s actual intent is to express the imagination of a child, it seemed fitting here, as it describes a place in the middle of a staircase that is neither up nor down.  It’s a place that defies description because “it isn’t really anywhere.”

What an apt metaphor, not only to describe the place my grandmother is in her life journey, but also where she now fits into the health care system. She has somehow found herself in a strange parallel world: in the hospital, but not quite admitted; needing skilled nursing, but settling for what Medicaid might (possibly) pay for. She is, indeed, as the poem states, somewhere else instead.

Given the nature of the circumstances, it’s probably impossible to entirely eliminate the feeling of being lost, but as policy development and process improvement with respect to end of life care evolves, I hope that this feeling can be minimized substantially. By continuing to improve transitions of care, developing appropriate reimbursement mechanisms, and by fostering healthy, meaningful dialogue, we can help provide a definable, more comfortable space for these patients and their families.

Beth Austin is a patient and consumer engagement advocate who blogs at the Crescendo Consulting Group blog

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