We all know in our heads that no one lives forever, but it's a different matter altogether when our loved one is dying in front of our eyes. For adult children facing hard choices about their desperately ill parents, the dynamic is often filled with grief and pain.
Recently I was asked to see Adele, a woman in her eighties who'd sustained a large stroke involving the left side of her brain. It was clear to all that her massive brain damage meant she'd never function independently again. And then there was the cancer. An abnormal admission chest x-ray prompted a CT scan that showed a nasty-looking nodule in her right lung. Other tests convinced Adele's primary medical team that the cancer had spread from another source. The consulting oncologist recommended comfort measures instead of aggressive diagnostic efforts. I was asked to consult. Adele was unresponsive and not arousable, holding her eyes at half-mast, and breathing through her mouth.
Adele's husband was distraught to the point of paralysis. "My daughter will be here soon, " he kept saying. When she arrived, it was obvious there was no love lost between parent and child; it seemed that every third or fourth sentence she said was a variation on the theme of, "Dad, be quiet." With some difficulty we talked about hospice as a means to help Adele die comfortably and with dignity. Adele's daughter accepted my advice to start down the comfort path. She and her father signed the papers, her mother was moved to the hospice part of the hospital, and staff worked to align her treatment orders with the exclusive goal of reducing pain and suffering.
The next day, all hell broke loose. Both father and daughter announced loudly that Adele wasn't getting good care and that they had moved to hospice way too soon. They wanted out, and they wanted out now.
It's actually a simple matter to quit hospice. You sign a couple of forms, and -- abracadabra! -- you are right back in the conventional health care system. Adele moved back to a regular medical floor. For the next ten days, various doctors once again noted her dismal prognosis and the near-zero possibility of improvement. The stomach specialist, who gets paid to put in feeding tubes, wrote an eloquent note about why it would be immoral to put one in Adele. All to no avail. The family insisted that Adele would soon recover and be like her old self. At the family's request, the social worker found a nursing home that would take her, and off she went.
Now, I haven't visited Adele's nursing home. But I'd wager that its care doesn't compare to that provided every day on our hospice unit by nurses who want to be there and who specialize in end-of-life care. So the decision to revoke couldn't have been based on care delivered, at least not when assessed objectively. But why would this family make a decision so obviously not grounded in objective reality? Why give up a good thing like hospice? Why, as nurses and physicians wondered aloud, did they want to torture her?
The author Francine Russo recently wrote, “The real challenge in making decisions about life-extending treatment is how much we can focus on what our dying parent needs rather than our own anguish. This is the ultimate test of emotional separation.” I believe Adele's family had trouble with emotional separation. I think their anguish at the thought of losing her blinded them to a loving and compassionate assessment of what she needed when she needed them to put her needs first.
Adele will die at the nursing home, unless she develops an abnormal vital sign that panics the facility into sending her to the emergency room. In that case, she'll die in the hospital while facing the full brunt of modern, disease-oriented medicine. Either way, it will be an entirely preventable tragedy. We need to put our loved ones first.