“Before I say anything, I need you to know I cannot give medical advice.”
So begins my response to every patient who has ever contacted me since I retired. The sting of my necessary preface has faded over the years as I've embraced other ways to help patients.
Recently a young father with progressive cancer reached out to me. All his treatment options were risky and offered uncertain outcomes, and no option was clearly best. Confused and worn out, he simply didn't know what to do.
It was easy to empathize, having faced a similar decision when I was a young parent. I remember crying to my best friend, “I know all my treatment options. . . and I don't like any of them.”
That sense of knowing my options grounded me enough to grab a piece of unlined paper and sketch a grid for the pros and cons of each of those options. Surely I could reach the right treatment decision the same way I'd arrived at my recommendations for patients in difficult clinical situations: rationally, using a filled-in table.
Looking back, I cannot overstate the generosity of time and expertise of the clinicians and researchers with whom I consulted in-person and by phone over the subsequent days. The additional medical information enabled me to fill in my grid accurately and completely—two conditions necessary for making a wise decision.
The consultants' final recommendations felt like an assortment of gold keys in my palm, weighty with the potential to rescue me. But unlike with door keys, I could try only one.
Scared and vulnerable, I stared at my grid and waited for the right answer to pop out of the boxes. Pros and cons transmogrified from utility values to brush strokes of my imagined futures. The emerging mental images stirred hopes and fears that colored my outlook and cracked open the door to panic. “How do I weigh the question marks in the columns of the newer—supposedly better—treatments?”
Over the next few days, I talked and talked with my husband, rabbi, and oncology social worker. From different perspectives, they helped me interpret the tabulated pros and cons in the context of my priorities and values until I narrowed down my choices to two equally reasonable, scientifically sound options.
The clock kept ticking. My cancer cells kept dividing. At this point, my husband respectfully stepped back: “Wendy, this is your decision. I'll fully support whatever you do.”
Not surprisingly (but surprising me at the time), wrestling with uncertainty felt much different as a patient than as a physician. With no fact or idea presenting itself to clinch one option as “right,” my burden grew heavy. I was acutely aware that once my body was exposed to toxic treatments, I couldn't change my mind and undo the exposures. If I chose wrong, I'd suffer—or die. My husband could lose his soul mate. . . my children, their mother.
Stacking the odds was a rational process. Choosing treatment in the setting of uncertainty remained a judgment call. The responsibility became almost unbearable, tempting me to throw a dart at my grid and be done.
Fortunately, an older co-survivor stepped in to remind me of something I already knew as a physician: Even more than I wanted to move on and start treating the cancer, I wanted to do whatever it took to make the best decision. My efforts—agonizing as they were—would serve me well forever after, whatever happened, because I'd be comforted by my confidence that we'd done the best we possibly could.
In her wisdom, she then liberated me from the shackles of indecision: “No matter how long you look, you'll never find a guru sitting on some mountaintop with your ‘right’ answer. There is no ‘right’ answer; only a ‘best’ answer—or a few ‘best’ answers—for you.”
Staring at my two remaining choices, how did I take that final step? No additional facts, theories or expert opinions could help me. So I listened to intuition in its unscientific glory. Sitting quietly, I embraced one option and then the other, back and forth until eventually one elicited a vague, comforting peacefulness.
Faith. Gut feeling. Call it what you will. Science and reason could not produce one best option. Only because they couldn't, I trusted a feeling to make the final call.
So today, how should I respond to that patient who emailed me?
I believe we help such patients by...
- Validating the stress: “Many patients find this decision-making the most stressful part of all.”
- Offering reassurance: “Once your decision is made, the associated distress will abate.”
- Warning of premature decisions: “Even more than you want to be done with this decision, you want to make the best decision for you.”
- Encouraging fortitude: “Investing time and energy in this decision will serve you well forever after. No matter what happens, you'll know you did the best you could.”
- Stoking confidence: “With time and guidance you can—and will—make the best decision.”
If at the end of the decision-making process patients still have no clear best choice, we help them by reframing their decision: “These final options are all ‘best’ options, so you can't make a wrong or bad choice. Whichever path you ultimately choose offers real hope of a better tomorrow.”
In the setting of distressing treatment decisions, compassionate care involves not only providing expert information and recommendations, but also ensuring that patients can hear and process what you tell them. By wrapping facts and recommendations in words of comfort and inspiration, you enable patients to work their way to the best decision for them.
The rewards are great. Your patients—and you—can move forward with hope and never look back with regret.