Thursday, April 16, 2009

Reframing

The battle was on. Weeks out from major surgery from which she'd never fully recovered, the elderly mother was in bed, moaning in pain and telling anyone who'd care to listen that all she wanted was to die. Her daughters fought with her openly, telling her she was a fighter and that she'd always bounced back before. They instructed the nurses not to give their mother pain medicine because it made her too "doped up" to battle for a cure. The nurses gnashed their teeth as, powerlessly, they watched their patient suffer. The mother said she didn't want another surgery to place a feeding tube, but the daughters insisted. Eventually the mother signed the consent, but her doctor said he wasn't sure she truly understood what she'd signed. The daughters fired the doctor and recruited a new one. That physician persuaded the daughters to let him start pain medication, but the mother continued to moan and lapsed in and out of consciousness, sometimes making sense and sometimes speaking gibberish. Eventually someone said, "Let's call palliative care."

Parachuting into a battleground like this is something every palliative care physician experiences -- sometimes more than once a day. When I arrived on a Friday afternoon -- and it's always a Friday afternoon, or so it seems -- I saw an elderly woman restless in bed with a furrowed brow and rapid breathing. It was obvious that she was in pain. There was no feeding tube, but she was getting a souped-up IV that provided calories, amino acids, and vitamins. I could engage her in conversation only sporadically. When she seemed most lucid, she said she was done with treatment and wanted only to be left alone. When I asked if she wanted to die, she closed her eyes and nodded.

One of her daughters -- I'll call her Lila -- was in the room with me, and when my examination was over I took Lila to the family lounge. We reviewed everything that had happened since the surgery. She did seem to accept that her mother was gravely ill, but she was unsure about the dying part. She felt that a terminal prognosis would mean her mother would stop receiving care and basically just be left alone to die. And she had an issue with the staff accepting her mother's word for it. "Look," she said, "if a person has a bad stomach ache, he might say 'I want to die, I want to die,' but it's because of the pain. He doesn't really want to die."

As I listened to Lila's comment, I felt she had a legitimate point. How many of us have said the word die in just the way she described? But I also sensed an opening, a way to reframe the discussion. "You may be right," I replied. "Perhaps when your mother says, 'I want to die,' she's really saying, 'I want you to relieve my pain and suffering above all, and beyond that I'll let things unfold on their own.'" I said that we could actually do that -- treat her pain without making her unconscious, and support both daughters and their mother no matter what happened. I didn't talk about dying. I talked about living without suffering for however long she would live.

We came to an agreement, and with that my biomedical/drug-prescribing/doctor side kicked in. I changed the pain medicine to a more effective one at a lower dose. I diagnosed delirium -- by definition, fluctuating level of consciousness -- and prescribed a medicine to help clear the mother's disordered cognition. I left the IV alone, figuring that one had to choose one's fights. I altered some other parts of the care plan to minimize pain.

Lila and her sister, taking shifts, remained at their mother's bedside for another two and a half days until she died. By Saturday morning, the mother was unarousable and the daughters said they understood it was time to say good-bye. Throughout the vigil they told the staff they believed their mother was no longer suffering. 

"All we are saying," the Beatles sang almost 40 years ago, "is give peace a chance." The prerequisite for peace -- between nations, between people, and even between the warring parts of oneself -- often is a subtle reframing, a tiny change in perception that illuminates a different way of thinking about the conflict. And it's true for peace in dying, too.

3 comments:

  1. The interaction, the compassion and change in outlook or should I say the chance to view things in a different light brings me solace. Thinking how everyone can move forward and release fears and pain in such a sacred moment is nothing but grand blessing. Thank you for teaching in all the ways you do... We all can certainly gain insight to ourselves and others by listening and taking action in loving ways for all concerned.

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  2. This is also my life on a daily basis. I think you're right with the methaphor. When you parachute into the battleground, you may not be sure who is friend or foe and you must tread lightly as not to alarm those that innocently stand by. You have to calm those that are terrified and be careful of those officers with "big medals" on their jacket as not to offend them or feel like you're taking charge. It's quite a balancing act and a talent that many of our colleagues are not aware of.

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