They strongly suggested we keep her in the hospital: Decisions at the end of life

When 32-year-old Rosaria Vandenberg lay unconscious in the hospital, a malignant brain tumor stealing her life, her brother decided to overrule her doctors' advice and bring her home to die. He believed, but he wasn't sure, that this was what she would have wanted. The truth is, when she was conscious, her family had never asked.

Back at home, Rosaria's two-year-old daughter, who had been afraid to touch her mother in the hospital, snuggled next to her in bed. Rosaria opened her eyes, the first time in a week, and took in the sight. She died the next night at home.

Her death made her sister-in-law, Alexandra Drane, realize that she had not thought about the kind of healthcare she would want at the end of life, much less discussed it with her family.

Such a conversation would have guided the family in the final days of Rosario's life. "When the end was near, the doctors pulled us aside and advised us of the options available. They strongly suggested we keep her in the hospital to make sure she would be well cared for – worrying that her case was so complex, there was no way we could care for her at home."

But her family could not get comfortable with the idea of Rosaria dying away from home and the daughter she so loved. In the end, the connection made between Rosaria and Alessia in the final hours was more than enough to convince the family that they had made the right decision.

Alexandra Drane wanted others to know that, so she launched Engage with Grace. Her website poses five questions for family members, e.g., "Could a loved one correctly describe how you'd like to be treated in the case of a terminal illness?"

Advice: Have the tough conversation with your family. It might help to show this to them to start the conversation.

Read another story about the decision at the end of life.

Thanks to Kay Lazar for the source article in yesterday's Boston Globe.