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What Could Have Been

This month I wanted to share a personal story about a missed opportunity that added to a

difficult death. My Dad passed away the day after Christmas 2023 after a long standing

diagnosis of Parkinson’s disease with a variety of co- morbid conditions. He had just been

released from the hospital after yet another round of Covid. He subsequently fractured his hip

and was re-hospitalized for a hip repair. As with so many in this situation, he never recovered

and sadly passed away within 2 weeks. His death is not what lingers in my mind as I was

prepared for that eventuality and we had spoken about it and the value of hospice when I saw

him in June. He had been quite clear that he did not want heroic measures but that he also

feared death and was not ready for hospice at that time. During his hospitalization all heroic

measures were taken including intubation and ventilation and hospice was rejected. The day

my Dad died, thankfully, I had the opportunity to speak with him and am forever grateful for

that. Yet, a man afraid of water and drowning drowned in his own secretions. A man who loved

food had a feeding tube placed and was not allowed to eat for weeks. My Dad a naval hero who served 3 tours in Vietnam, bloated to over 200 pounds, was in multisystem failure and died in pain. Why am I sharing this? I am sharing for several reasons. Not to cast blame but to share the what could have been and how that could have been would have made his passing so much easier for him and the family. Imagine if his wishes had been honored and that hospice would have been accepted. There would have been no intubation and the complications that arise from that intervention, he would have been allowed to eat despite the risks, he could have passed at home like he wanted, his symptoms could have been managed, he could have had Chaplain support to cope with his fear of dying, the social worker could have helped him with settling his affairs, the aide would have bathed him and ensured his dignity was maintained, a volunteer could have sat with him and read from his favorite historical novels and there would have been peace and quiet in the place he wanted to be most. This is a cautionary tale for sure. Be sure you know that the person you designate as your decision maker really will follow your wishes even when it is hard to do so. Plan ahead for a variety of scenarios and how you would face each one. Finally, introduce hospice early and repeatedly if necessary. Someone will be grateful you did.

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