At 56, she seemed too young to die. Again, breast cancer had returned. But she had survived before and her family was sure she could again.
This time, though, the Wisconsin woman sensed she wouldn’t make it.
Her husband and children didn’t want to hear it. Each time she tried to talk to them, the reaction was: “You’ll be fine. Keep your spirits up. You can do it. Don’t give up.”
It made her feel so alone, their unwillingness to see how sick she was. How could she negotiate the time that was left her without her family’s support?
“I’m so tired of the treatments, of not feeling well,” she told Mary G. Runge, president of Chicago’s Horizon Hospice. “I’ve had a wonderful life, but I can’t do this anymore. It’s time to let what will happen happen.”
A battle
At the end of life, painful conflicts can arise between a patient who is ready to relinquish medical interventions and a family who is not ready to give up.
Unnecessary treatments, discomfort, significant costs and a sense of painful alienation can be the result.
“Your mom is trying to take care of your needs — it’s time for you to support what she wants,” Runge told this woman’s two adult daughters. In time they listened, and their father went along.
Often, however, that isn’t the case. Many families have unrealistic expectations of modern medicine, primed by TV shows that portray doctors as wonder workers who miraculously pull patients back from death’s door.
“The script is — the doctor is going to do something incredibly impressive and turn the tide and the patient will get better. It’s a fantasy,” said Dr. Roman Kozyckyj, director of palliative care at Advocate Christ Medical Center.
He remembers an 86-year-old woman with end-stage congestive heart and renal failure. In a lucid moment with her doctor and sons at her bedside, the elderly woman announced that she was ready to give up dialysis and “to go meet God.”
Giving in
At that point, one son, a large, forceful man, said, “Mom, why don’t we give it another shot?” Not willing to argue, the mother sank back in her chair.
When the doctor took the son aside and said, “You know, your mom’s wishes are really quite clear,” the overwrought man wouldn’t listen. “He wanted his mom to be there, just like she’d always been,” Kozyckyj said.
Often, guilt is a behind-the-scenes factor in a family’s resistance. That was part of the picture earlier this year for a woman in her late 80s who had multiple sclerosis and dementia interrupted by occasional bouts of clarity.
In one of those moments, the longtime widow was able to tell her only child, “Whatever happens, please don’t put me on a feeding tube,” and the daughter agreed.
But after the elderly woman suffered a debilitating stroke, the young woman did an about-face and “began insisting that everything be done to keep her mom alive,” said Rev. Nancy Waite, director of pastoral care for Evanston Northwestern Healthcare.
It seemed deeply irrational until the daughter broke into tears and admitted to Waite, “I can’t let Mom go because I haven’t done everything I could for her. … I didn’t take her into my home and care for her myself.”
Before the stroke, the daughter had attended to her mother’s needs at home; after emergency surgery, the woman went to a nursing home, where she had stopped eating.
“Once the daughter verbalized the guilt, she was able to understand that it made no medical or human sense to put the feeding tube in,” Waite said.
For especially close families, the terrible finality of death can sometimes provoke deep denial.
Dr. Martha Twaddle, chief medical officer for Midwest Palliative & Hospice CareCenter, saw this play out recently with a 68-year-old former construction worker, a longtime smoker who developed severe lung and heart problems.
Every month or so, the man would end up in a crisis at the hospital barely able to breathe. Over time, respiratory failure appeared imminent. Still, his wife, two children and grandchildren couldn’t imagine life without him.
Final wish
Finally, a day came when the patient, in a much-weakened state, had to go into a nursing home. A series of medical crises followed: a skin infection, delirium, pneumonia. “I’m going to die soon, I know it,” he told Twaddle during one of her visits. “Don’t try to bring me back.”
It was time, Twaddle decided, to talk to the family about comfort care — and to suggest that no further treatments were advisable.
“The children went nuts,” the physician remembered. “They insisted, ‘You don’t understand our dad. He’s a fighter.’ “
The family was still angry when the man died about a week later, despite everything doctors tried to save him. “They just weren’t ready to realize that he was at life’s end,” Twaddle said.
———-
jegraham@tribune.com
