But can a piece of paper signed while sitting in a lawyer’s office or living room really reflect what someone might feel lying in a hospital bed hooked up to tubes and monitors?
In their book “Your Medical Mind,’’ published last fall, doctors Jerome Groopman and Pamela Hartzband write about the complexity of advance directives and how hard it is to predict what we will really want as our days wind down.
Care at the end of life is not about deciding “when to pull the plug,’’ according to Groopman and Hartzband. Rather, it’s about deciding when to shift the focus of medical care from prolonging life to protecting quality of life.
Roberta Cole Fortgang, a clinical social worker with a practice in Newton Highlands, said her parents’ advance directives were a good starting point - but not more.
Her father had wanted to live forever; he refused to talk about death, even at 96 with multiple illnesses. Knowing that, and watching him continue to flirt with his female caregivers, made it easier for her to encourage doctors to keep going with treatment well beyond what she might otherwise have thought was the end.
Her mother, who died in June at 90, had said she never wanted a tube down her throat or major surgery. But her long, slow decline from repeated heart attacks made it much harder to figure out what to do.
“I kept having to reassess and talk to the caregivers and see how far she’s going to go,’’ Fortgang said.
Doctors used to make all such care decisions themselves.
“In the 1960s, shared decision-making occurred when the doctor shared his decision with you,’’ said Dr. Ira Byock, director of palliative medicine at Dartmouth-Hitchcock Medical Center, and author of a forthcoming book, “The Best Care Possible,’’ about end-of-life choices.
Today, most hospitals and care centers - including the Hebrew Rehabilitation Centers where Fortgang’s parents lived - will involve families in the decision of how aggressively to approach the waning stage of life.
