Grace & Anthony

Two recent New York Times stories provided very different looks into the complexity of decision-making at the end of life.

One is the ongoing story of a deeply religious family’s anguish over a dying adult daughter’s fate. Grace Lee has asked to be removed from life support and allowed to die, but her parents believe that tantamount to suicide, and a sin. The woman remains competent to make her own decisions, and after asking that life support be discontinued, she changed her mind.

“Clearly she was badgered into this position by her parents,” says the attorney for Grace Lee. “But in that context, what an incredible gift to give them at the end of her life."

By contrast, former Times editor Bill Keller recounts the death in England of his father-in-law, Anthony Gilbey, a fate that was accepted with humor and grace by the family, including the dying man himself, who replies to his physician’s terminal prognosis, “So, no more whoop-de-doo.”

Clearly, in the latter case, there was agreement that aggressive measures to prolong the dying process were not in the patient’s best interest. For Grace Lee, best interest is more complicated. When she asked that treatment be discontinued, the interest would seem to have been hers alone. But amid her family’s anguish, and stated hope for a miracle, her own best interests changed.

For more on now the Grace Lee story is being reported, see here and here.

In his final days, Anthony Gilbey was able to state his wishes. And Grace Lee remains able to answer questions with nods or shakes of her head. Too often, the patient is beyond reach, and the decisions are between physician and family members, with no real sense of what the patient would want.

The Gilbey and Lee stories also share this: In the telling, the role of the nurse is trivial or non-existent.

“Anthony Gilbey’s doctors concluded that it was pointless to prolong a life that was very near the end, and that had been increasingly consumed by pain, immobility, incontinence, depression and creeping dementia,” Keller writes. “The patient and his family concurred. And so the hospital unplugged his insulin and antibiotics, disconnected his intravenous nourishment and hydration, leaving only a drip to keep pain and nausea at bay. The earlier bustle of oxygen masks and thermometers and blood-pressure sleeves and pulse-taking ceased. Nurses wheeled him away from the wheezing, beeping machinery of intensive care to a quiet room to await his move to the other side.’”

But was it “the hospital” doing all that unplugging, disconnecting and bustling, or was it a nurse?

In stories about Grace Lee’s legal proceedings in various media, a search for the word “nurse” comes up empty.

Maybe this is understandable -- these are stories about medical decisions, which are the domain of the physicians, patients and families -- and, when they can’t work it out, the courts.

But the nurse’s role in such care is not to be overlooked. What must that feel like, to watch a patient wince or worse while you repeatedly perform procedures you know hold little or no therapeutic value? Nurses aren’t making the decisions, but it is their job to deal with the consequences -- in particular, to be meticulous about bed sores and dressing and tube changes, because over the weeks or months of life support, only such meticulous care will keep the pneumonia and infections at bay, and for only so long. Grace Lee called her care “unbearable”; the humans providing that care are the nurses.

In an ongoing study of medical care deemed futile by Community Voices in Medical Ethics, which hosts this blog through its Community Ethics Committee, we have heard two stories told in retrospect by parents about aggressive, prolonged care for children when “giving up” felt inhuman. Years after the deaths of these children, the two parents still carry regrets of the “if I knew then what I know now” sort.

One has come to believe the child wanted aggressive treatment to end long before it did.

The other has this memory: When the child died, after months of aggressive life-saving attempts, the nurse quit. This dedicated nurse had stuck with the family throughout their ordeal, even while others refused to participate. But when the child died, the nurse, burned out, got out. There was no next patient for her.

And that’s why I’m thinking about Anthony Gilbey’s and Grace Lee’s nurses. 

NOTE: Keller’s story provided an excellent insight into England’s Liverpool Care Pathway.