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.

Debility Unspecified

Lorraine (not her real name, of course) is a woman in her eighties who has been slowly failing for a number of years. She's been anemic without a clear cause and has been losing interest in eating in particular and her surroundings in general. Her reclusiveness probably is also fed by her longstanding diarrhea, which commenced after bowel surgery three years ago. She's been badly depressed for many years, receiving both medicines and electroshock. Oh, there are other "diagnoses," too -- diabetes, high blood pressure, acid reflux, arthritis -- but no one disease ties everything together and explains her decline. It seemed obvious to her doctor that she was likely to die within a few months, hence the interest in hospice. She is dying, or so it seems, but it's death from a thousand paper cuts. Our word for this in hospice is "debility unspecified," sometimes called "adult failure to thrive," but in English I think it means a frail elder whose soul is slowly detaching from the world. I have been present at the moment of death and have felt the sudden departure of the soul -- something I hope to talk about in future posts -- but I am convinced that sometimes the soul leaves the body inch by inch over a long time. "Debility unspecified" is what we say when the soul leaves a gap big enough for us to notice.


So many of our parents look just like Lorraine, and the anguish of the children is palpable. One of Lorraine's daughters called me today, prompted by a decision to seek nursing home care. But what Patricia (as I will call her) really wanted was an answer to this question: can my mother's decline be reversed? She asked about intensive conventional medical treatment, physical therapy, and (to use her word) "coercing" her mother to eat.

I found myself responding on several levels. It would be easy, of course, to pigeon-hole Patricia as a child who just can't accept reality and let her mother go. There's an old line, which I think originated with Al Franken, that says "denial ain't just a river in Egypt." Over the years I've heard from unhappy family members who've said they felt pushed by hospice workers to, in effect, stop whining and face facts. Inside myself I wasn't asking Patricia to stop whining, but part of me understood her questions as a form of denial. But denial, of course, is a defense mechanism. Underneath the defenses was a child frightened about losing her mom. An adult child, but a child nonetheless. Recognizing that strong emotion, the thing being defended against, helped me keep my composure as Patricia kept going over the same ground and asking the same questions.

But I also felt myself getting angry -- not at the patient or her family, but at the health care system generally. We in medicine have transformed the public's consciousness about death. We pretend to have an answer for everything. We see disease, even death from a thousand paper cuts, as something we can reduce to an abnormal and controllable physiologic process. We have created the expectation that Lorraine's slow decline, the gradual detachment of her soul from her body, can be stopped or at least deterred indefinitely. In its inability to accept the inevitable and shift its focus from cure to comfort, modern medicine resembles the ancient Persian emperor who sent his troops into the sea with whips to persuade it not to make waves. On that level Patricia isn't in denial. She's behaving exactly as we trained her to behave.