My mother had a creative awakening in her 40s. She developed a sister-level friendship, and the two started a business. She did more and more to take care of herself, in ways big and small. She and her best friend and business partner went to Israel, leaving their gentlemen stateside. She started asking us to fix our own beverages and serve ourselves dinner, buffet-style, instead of her previous more labor-intensive way of serving dinner.
When she learned she was going to die, she applied the same practicality.
Matter of Fact
“I just hate it for you girls,” she said, to my sister and me. She wrote a letter about who should keep what, and how she wanted her funeral to be. The three of us sat on a small sofa and looked through a folder she had made, explaining which antiques and objects of beauty came from her side of the family, and their stories, and that they should stay on the matrilineal road. She was matter-of-fact, and there for us.
She told my father she loved him and wanted him to be happy and that she hoped he would marry again.
She prepared a living will, in which she specified exactly what to do for her if she was unable to speak for herself, and had no hope of recovery. No feeding tube, even no hydration. When she reached that point, she would be ready to go, she reasoned. She gave the document to us and to her doctors.
Yet even my mother, who planned so well, did not get the kind of end-of-life care she intended.
Over-Treated
Her doctors over-treated her. Not that they were not good—they were fine doctors. But it was too long between when it was time to switch to palliative care and when it happened—days before her death. No one was ready or able to say, “She has months to live.”
Apparently it’s pretty hard to say, hard to predict.
My father cared for her valiantly, at home, as she grew helpless. He should have had hospice support, but he did not, until her final stroke. Had she been on home hospice care, or in a hospice, people would have focused on both of their well-being, on her and his emotional or spiritual needs. No one would have kept trying to shrink the tumor or anything like that.
He took her to the doctor for tests and treatments when it was already time to just make her comfortable. We all thought it was the right thing to do. It was not.
Perverse Incentives
Americans suffer needless discomfort and undergo unwanted and costly care as they die, in part because of a medical system ruled by “perverse incentives” for aggressive care and not enough conversation about what people want, according to a report released Wednesday.
Though people repeatedly stress a desire to die at home, free from pain, the opposite often happens, the Institute of Medicine found in its “Dying in America” report. Most people do not document their wishes on end-of-life care and even those who do face a medical system poorly suited to give them the death they want, the authors found.
The result is breathing and feeding tubes, powerful drugs, and other treatment that often fails to extend life and can make the final days more unpleasant. The report blamed a fee-for-service medical system in which “perverse incentives” exist for doctors and hospitals to choose the most aggressive care; inadequate training for those caring for the dying and physicians who default to lifesaving treatment because they worry about liability.
“It’s not an intentional thing. It’s a systemic problem,” said David Walker, the former U.S. comptroller general, who co-chaired the committee that issued the report.
For me, I was vigilant about unneeded care when my father declined. He and I had talked about it a lot, and he had written a letter in which he said “No tubes! Pull the plug!” in his typical bold style. But like my mother, he only was assigned to hospice care after a catastrophic event.
About six months before he died, he went to the emergency room, and a doctor there told me he was likely to die within months. She was right, yet it somehow did not become official enough for him to go into hospice. One doctor forfeited my good regard when he asked if I was trying to hasten my father’s death because I expected to inherit something.
Hospice care should be used more freely. This report is a step toward that. I support it.
The Associated Press contributed to this report.
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