Having an advance directive is no guarantee that end-of-life wishes will be honored. A 1995 Robert Wood Johnson Foundation-funded study of 4,300 critically ill patients found that only 49 percent who requested do not resuscitate (DNR) orders actually got them; 70 percent of those patients were never asked their preferences. There have been many cases in which individuals who have taken all the right steps have been deprived of seeing their loved ones’ wishes carried out because of physician, family, or institutional resistance.
Julie Kurnitz’ mother had a living will with a DNR order on it. But when 84-year-old Sylvia Kurnitz, an Alzheimer’s patient, was moved from the nursing home to the hospital for a respiratory problem, the emergency medics put her on a ventilator to help her breathe. Julie says she didn’t think much about it because she thought it would be temporary. But her mother wound up depending on the ventilator. When Julie and her sister, who was her mother’s health proxy, asked the hospital to remove it based on her living will, they were rebuffed by her mother’s physician.
“They were not about to take her off the respirator. My sister said, ‘We should unplug her and see if she can breath on her own,'” says Julie. The physician was more interested in curing an infection Julie’s mother had acquired. Julie and her sister began to challenge him; their mother had Alzheimer’s disease and she was 84 years old. The doctor said to Julie’s sister: “So, you are asking me to put a pillow over her face?” Julie and her sister prevailed, but only after they threatened to seek legal action. Another doctor took over the case and her mother was removed from life support after being tethered to it for more than a month. Julie admits the first impulse “was to plug it back in.” But she knew this is what her mother wanted. Sylvia died two days later.
Sending a Message
Karen Kaplan of Choice in Dying acknowledges that “a sufficient number of physicians have not been trained to regard [living wills] as a document of law.” But she says that is changing. Hospitals are beginning to step up their efforts to educate staff as more courts make providers suffer the consequences.
Last year, a Michigan jury awarded $16.6 million to the family of 34-year-old Brenda Young because the hospital ignored her living will wishes. Brenda Young, who suffered a series of strokes tied to a blood vessel disorder in her brain, had appointed her mother as a health care proxy. She made clear in writing and via her mother that she did not want to be saved if she could not be restored to her former state. But those wishes were not complied with because of a breakdown in hospital bureaucracy. Brenda now lives with her 70-year-old mother in a complete state of disability and constant pain. She screams for hours at a time; her screams are so relentless that her mother can’t place her in a long-term care facility. She can’t feed herself, control her bodily functions, or sit up in a chair without being tied.
Gordon Hoy, a lawyer who represents Brenda’s estate, says the verdict should send a powerful message to the medical community about the meaning of advance directives. “When these documents exist, you are to follow [them] and consult with patients or their advocates before you undertake treatment . . . . If you disregard the rights of patients, then you are going to be held accountable.”