For many families, making hospice work at home means hiring extra help — out of your own pocket.
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“Imagine if you’re the caregiver, and that you’re in the house. It’s in the middle of the night, 2 o’clock in the morning, and all of a sudden, your family member has a grand mal seizure.”
Even though I would argue that most deaths aren’t good, we improve the quality of death of the vast majority of people we care for, often substantially. And there isn’t much that’s more satisfying than that.
It just doesn’t make the death good.
With the assistance of the World Federation of Right to Die Societies and Exit International, I surveyed voluntary assisted dying (VAD) advocates and supporters around the world to inject some much-needed data and objectivity into the VAD debate.
These stories are not for everyone, but they are topics that the author believes shouldn’t remain in the silence.
End-of-life conversations can ease suffering for families, not just patients. You can start these conversations simply, like saying, “I need to think about the future. Can you help me?”
“They made the end of his life horrible and painful and humiliating,” Elaine Greenberg said. “What’s the sense of having a living will if it’s not honored?”
Decisions are often made unilaterally without necessarily considering what the one dying wants or needs. A respectful death involves truly listening to the dying and being open and honest with them and the family.
When done right, hospice offers Medicare beneficiaries an intimate, holistic and vital service. But sometimes pinpointing what constitutes a “good death” is nearly as difficult as determining what makes a good life, and families do not always realize when hospice is failing them.
“You have to be well connected within a network of doctors or skilled in researching such matters, and that’s one possible explanation of why well-educated people are disproportionately represented in our findings.”
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