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Death & Frames

Six weeks ago my mother was lying in a hospital bed, weakened by an abdominal infection that had days earlier threatened to go septic and had only receded the night before I flew in to see her.

This hospital visit was her second of the past month — the first had been for emergency surgery to repair a perforated duodenal ulcer that had also dumped two liters of bacteria-rich gastric juice into her abdominal cavity, elevating her infection risk. A month short of her 90th birthday, she had survived the surgery — the first of her life. But the aftermath — including a prolonged intubation, sudden dips in blood pressure and the loss of her swallow function, which necessitated insertion of a feeding tube — had been rocky. Her dementia had worsened, she was severely deconditioned, and it was unlikely she would ever recover to the self-sufficiency necessary to return to her independent-living apartment in a retirement community. But now she was alert and conversational. My sister and I were relieved by her recovery and hoped to get her into assisted living and avoid a nursing home.

As I had power of attorney for her for health care decisions, a team of hospital doctors held a conference with me that morning about what to do next. A palliative care doctor immediately suggested I move my mother to hospice care, and then asked if I had considered removing her feeding tube at some point.

I was confused. Why hospice — wasn’t my mother’s infection improving? Wasn’t removing her feeding tube tantamount to euthanasia? What was the difference between palliative care and hospice? Wasn’t there hope for at least some rehab and improvement so she could qualify for assisted living? The answers I got to these questions that morning just deepened my confusion.

What was missing from the discussion was a framework: not just a description of the condition my mother was currently in, but

  • the dangers they saw her facing from multiple threats over the next six months;
  • the ceiling they forecast for any improvement; and
  • the differences between a “maximum medical” approach (in which every threat to her health would be treated maximally, often with fresh hospitalizations) and a “hospice” approach (in which her comfort would be prioritized over aggressive medical intervention).

Here’s what such a framework might look like:

  • We could either continue to treat your mother medically — which will mean hospitalization every time she crashes — or move to maximizing her comfort.
  • She is likely to die in the next six months from one or more of the bevy of conditions she faces, regardless of what we do.
  • Hospice is the option to make her comfortable and increase the quality of life she has left over maximizing its quantity.
  • You can choose that option now, even if she won’t die for another six, eight or even 12 months.
  • We recommend you make that choice.
  • The literature shows that certain medical interventions that you might think are life-sustaining — such as a feeding tube — actually might hasten death because of their side-effects.

Those are hard words to hear, of course. But I heard them over the course of the next two weeks in talking with another medical professional I trusted, reading more about hospice and the literature on feeding tubes, and then coming back to the hospital’s palliative care doctor for a long followup to confirm what she had been trying to say in our initial conversation.

Armed now with not just good information, but with a good framework for thinking, we were finally able to make a good decision, and get our mom into a hospice approach for the last days of her life. But, because I had for those two intervening weeks lacked clarity on the frame I could have used to make the decision, she didn’t spend those last days in a facility or with the level of attentive care that either of us would have chosen. And I’ll always regret that.

In communicating research and science — especially in social media — we tend to refract our frames through new findings or facts. We argue about content, which tends to make for entertaining social media feeds. We assume people understand our frames, or we think talking about framing over and over is boring. Let findings or facts make the argument for the frame, we think.

But without making our frames explicit — about why we do what we do as scientists, for instance — our audiences are at sea. They end up ignoring us or defining us — usually through their own frames. Without a frame, whether they love you or hate you, they’re just engaging in a reflection of themselves.

The experience with my mother’s last days reinforces for me the importance of making sure your audience understands your frame, not just your facts. Giving guidance to the world isn’t just about a new op-ed or report. It’s about conveying a a way of seeing. That’s your frame, and it is everything. Even if others can’t practice what you practice, you can help them understand why you see what you see. As a researcher or scientific authority, it’s the greatest gift you can offer.