Revoke

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.

The Mouths of Gift Horses

Like many physicians, over the years I've received gifts from patients now and then. These sometimes have been occasioned by forces other than gratitude. When I was first in practice, I innocently inquired of a Mormon mother whether her faith permitted me to immunize her children. She gave me a copy of The Book of Mormon because she wanted me to comprehend clearly that, as she put it in her inscription, "Mormons immunize their children unless they don't." Point taken. Another early patient gave me a wheel of cheese. To this day I don't understand why -- but it was delicious.

There's frequently a deep subtext in the doctor-patient relationship, often expressed as a fault line where the tectonic plates of lay and medical culture collide.* This week three different families gave me a gift. Each illuminates a different part of how physicians, patients, and families struggle together over complex decisions at the end of life.

The first was a gift card for a local restaurant. The accompanying note by a grieving son thanked me for my patience in dealing with his mother and his siblings. The five children wrangled over every decision -- should we bring Mom home? should we find a nursing home? who'll take what shift caring for her? -- and it seemed that every day required a new negotiation and a new building of consensus. Sometimes I explained the same point to three different siblings in the same day, each explanation taking many minutes. It was a month before she was ready to leave the hospital and, as it turned out, go home for a short while before her relatively sudden death. As I thought about the gift, it occurred to me that the real message was: "We're sorry."

The second gift came from the wild-eyed, suspicious daughter described in my earlier post, "Code Status." This one was a necktie with a famous designer's label. The daughter told me, "I'm a deeply spiritual person, and I sense you are, too. I've had this tie for many years, just waiting for the right person to give it to. Now I have faith that you are that person." Being put on a pedestal always gives me vertigo. I thought perhaps this gift might mean "We have ultimate faith in you" or, worse yet, "You can do no wrong." I wondered out loud if I was permitted to accept such an expensive gift. (I am salaried by my hospital system.) The daughter replied, "Don't worry about it. I bought it in China, and it's a counterfeit." We'd just concluded working out an elaborate care plan for her mother that would include hospice enrollment a couple of days later. Naturally, the plan completely unraveled over the weekend when I was off call. So perhaps the message of this gift was: "Gotcha."

The last gift came from the daughter of an elderly woman I'll call Molly and who will be described in a forthcoming post called "Hugs and Kisses." As Molly finally lay dying peacefully and free of pain, consistent with her expressed desires but achieved only after a long struggle with her inner demons and with the system, her daughter asked me to choose an item from a collection of photographs she'd done. They were all beautiful nature scenes taken in the western United States. My selection was a sunset, the light shimmering on the ocean and framed by the dark silhouette of an evergreen tree. It seemed appropriate for the moment. We said our good-byes, and once again I learned that sometimes a gift means simply: "Thank you."

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*The clash between medical and lay cultures is expertly described in Hippocrates' Shadow: Secrets from the House of Medicine, by David H. Newman, M.D. This remarkable book should be required reading for every health professional, and for every person who's ever consulted a health professional.