Don't wait to ask patients what matters

We're two sleeps away from Christmas morning, and children everywhere are teeming with anticipation. I get a little giddy myself looking forward to hearing my son and daughter gasp with wonder at the 'surprises' (most of which they asked for explicitly) under the tree.

Nonetheless, I've repeated to them no less than 4,000 times during the past month that the presents aren't what really matters over the holidays. For our family, it's about togetherness and the joy of giving regardless of receiving.

It's hard for young minds lucky enough to take those intangibles for granted to truly grasp their meaning.

For many adults--patients and physicians included--what truly matters doesn't present itself until we're forced to find it, until all the shiny bows and wrapping paper in the world can't contain what we truly want or need.

The notion of distilling what matters and arriving at goals to preserve it has come up frequently in discussions about end-of-life care. As Atul Gawande, M.D., expressed in his book, Being Mortal: Medicine and What Matters in the End, even when a cure isn't an option, there are opportunities to offer patients and their families comfort, peace and the fulfillment of final wishes. And when patients perceive their lives as being appreciably shorter, they become much more interested in their state of being than what they could be doing.

But what about patients who don't have a foreseeable finality to their conditions? What about people who will survive an accident or illness but never return to their former state of health? What about people living with chronic or degenerative illnesses that even the best of modern medicine can't substantially alleviate? How are doctors to help people with many years ahead full of activities they could be doing, despite the physical and emotional barriers in the way?

A recent essay published in JAMA takes a look at just that circumstance, through the story of a patient named Karen. When authors Ronald M. Epstein, M.D., a University of Rochester professor, and Anthony L. Back, M.D., an oncologist at University of Washington, first introduce us to Karen, she is essentially hurting all over, inside and out. The middle part of the story--how physicians turned toward, rather than away, from her chronic suffering--is described in one of this week's top stories. The ending is a happy one: Karen began to find meaning in a life previously consumed by illness. "She was able to smile and was again her radiant self," the authors wrote, "yet was under no illusions about her illness."

It is a beautifully told narrative certainly fitting for the holidays. I feel a little more hope for humanity having read it.

Nonetheless, there's one part of Karen's story that troubles me. Matters only kept getting worse for Karen until she reached her breaking point, when she finally turned to her doctors and articulated, "I can't take this anymore." Only after stating directly that the condition of her life was intolerable did Karen get the attention and compassion that facilitated her turnaround.

The blame for those lost years doesn't rest solely with the doctors, Karen or anyone else. In our society it's an accepted cliché that people need to hit rock bottom before they get better.

But as I tried to express in an earlier column about the end of life, it's needlessly wasteful to take action only when it's do or die.

The traditional definition of a physician's prescription is expanding by the day. Doctors today often think beyond pills, recognizing the value of sending patients out for a walk, to a farmer's market or to a meditation class. But even those enlightened instructions are as easily forgotten as last year's toys compared to a human's need to feel whole.

It may not sink in the first 4,000 times you ask, but it's never too soon to tell patients to get in touch with what truly matters to them. Armed with that basic information, physicians and patients could be exponentially more effective in reaching shared, meaningful goals--before and after when one of them can't be a cure. - Deb (@PracticeMgt)