When palliative care physicians, the caretakers of those at the end of life, speak to families about a loved one who is dying, they ask, "What was he like when he was well? What are your best memories of him? Tell me about his personality." I did not realize the importance of this until now. These questions were always the ones I forgot when I lead a family meeting, the questions I thought were small talk. But recently, one of my grandparents passed away, and now I really get why the palliative care doctors ask.
When I think of my grandfather, I don't think of those last few months suffering from metastatic cancer. I don't think of the progressive indignities he went through, the loss of bowel function and the ability to eat and the ability to walk. I don't think of the transition to hospice, that mixed feeling of relief and giving up, that release to the certainty of time. No, I think of the fierce pride he had in his children, the stoic persistence to work late in the night, the soft care for his wife, the unrelenting trust he had in people, to a fault. I think of his grasp as he shakes my hand, the way he communicates with facial expressions, the quiet customs he keeps.
I know now why that period of mourning, for some people, means recalling and remembering the person they knew, and why palliative care doctors ask. Especially in modern medicine, patients can be depersonalized near the end, and we must not forget the persons we love, even as they are dying.
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Keeping the individual in clear view, regardless of diagnosis, is such a powerful message. America's taboo on the topic of death has so many unintended consequences like this symptom-centric vs life-centric view. I founded the nonprofit, DeathWise (www.deathwise.org) to change the conversation about death and dying. By providing education, resources, and tools to help individuals and families with end of life planning, we strive to support and engage the community and reduce the unintended consequences.
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