I am sitting in a Budget car rental lounge waiting for my daughter to arrive from Denver. Tomorrow we will memorialize my mother.
It is interesting to reflect on reader reaction to the editorials I’ve written about my mom’s final year. Some of you lament the resources spent in prolonged ventilator care, repeated hospitalizations, and seemingly futile interventions. And while I can relate to this concern, both my brother and I agreed that following her wishes was what mattered most—all expenses aside.
I recently came across an article on the front page of the Sunday New York Times, about a charismatic leader in palliative care who, when faced with her own metastatic cancer, did everything possible to keep death at bay. Perhaps that should not be surprising. Who is to know what any of us would do when faced with such personal choices? And who better to make such decisions than the patient herself? I remain convinced that predicting the course of severe, even life-threatening illness, is highly chancy. Neither my brother nor I—nor Mom’s physicians—would ever have predicted her lengthy survival.
Other readers share my concern that palliative care remains the exception rather than the rule, and that services such as hospice continue to carry a stigma. A close family friend recently died at a local hospice. Ironically, her final days of inpatient hospice care were deemed unnecessary, and her husband was left with a significant bill. I am sure the peace of mind afforded this friend by the caring, experienced hospice staff was well worth the expense. But it is very disappointing to realize that our health care system is still more prepared to pay for a stint in the ICU than to provide a distraught spouse with the help he so desperately craves. I can’t help but think that this reflects our misplaced values—it’s as if one’s final week is somehow less worthy of support than the previous 75 years.
Over the course of the year, many of you—readers whom I have never met—have provided me with words of encouragement and support. For this, I am indebted. I trust that you—indeed, that all of us who care for patients (and families) at the end of life—will remain dedicated to making their last days as comfortable as possible, in accordance with their wishes.