“Under the final rule, he said, “patients and families can have the discussions when and where they want” — before patients become ill, after they receive a diagnosis of cancer or other serious illness, or while they are receiving hospice or palliative care. In such conversations, patients could discuss whether and how they would want to be kept alive if they became too sick to speak for themselves. Doctors can advise patients on options for end-of-life care, which may include advance directives to forgo aggressive life-sustaining treatment.”
I welcome the change in heart. But the ruling came at an interesting time for me as I was reading The Art of Choosing by Sheena Iyengar. (Her TED Talk is here) Her research reveals that an already difficult decision is more difficult that we imagine. I guess I knew that in some intuitive way. As a vascular surgeon I have on more than one occasion had The Conversation with a patient as part of my role as companion through the valley of the shadow of death. But when confronted with the same concerns regarding my mother, I dithered and tried to make bargains with myself. It was my wonderful wife that pointed out what I was doing and helped me stop the madness associated with rehabilitative care for a woman unable to care for herself and completely demented.
“…We’re reluctant to give up choice in any situation because we believe it enables us to change and shape for the better; on the other hand, we recognize from experience and perhaps from intuition that some choices, no matter which option we choose and what the outcome will always diminish our happiness. This is true when choice is unavoidable and offers us only undesirable options, and it is particularly true when we must think about what we cherish not in terms of worth but in terms of value.”
Iyengar certainly captured my dilemma with respect to my mother. She also introduced two additional terms, worth and value. I am used to thinking about advance directives in terms of cost-benefit, behavior economics, regret theory and a host of other frameworks that have informed my clinical practice. But worth and value are a bit different. She continues,
“I borrow this distinction from Lewis Hyde, who writes in his book The Gift: “I mean ‘worth’ to refer to those things we prize and yet say ‘you can’t put a price on it.’ We derive value, on the other hand, from the comparison of one thing to another. … If a thing is to have market value, it must be detachable or alienable so that it can be put on the scale and compared. I mean this in a particular sense: we who do the valuation must be able to stand apart from the thing we are pricing. We have to be able to conceive of separating ourselves from it.”
These words, worth and value bring along emotional attachment and it makes a ‘rationalist’ approach more difficult to well, rationalize. The last time a discussion of advanced directives was broached, let alone condoned was in the fight over the Affordable Care Act and the subsequent rise of the “Death Panels”. Iyengar captures the paradox.
“We don’t want to be told what to do, but we also don’t want to make choices detrimental to our health and happiness. We’d like to minimize the suffering of people facing illness and death, whether their own or a loved one’s, but we’re loath to do so by restricting choice. …would you more readily relinquish choice… If yes, who would you trust and how frequently would you allow them to choose for you? If not, why? Is it because you have uncommon insight into your own anxieties, motivations, and behaviors and thus less prone to error? Are you able to make objective evaluations when others’ emotions run high? Or maybe you’re worried its only a couple of short steps from forgoing a few choices to becoming automatons in an Orwellian dystopia; you give an inch, they take a mile.”
Before I made a decision with respect to my mother I was more convincingly (at least to myself) in the latter camp. I haven’t changed views, but having experienced more of the emotional ambiguity, I am a bit less confident or is that hesitant? In the end, Iyengar does provide a solution. She finds an approach in the story of Odysseus and the Sirens, you know, where he was lashed to the mast to avoid a certain death by their irresistible call.
“We can similarly choose to relinquish our difficult choices to others, which neatly avoids having to decide between the distress and harm that would result from choosing for ourselves and the diminished autonomy that would result from others’ restricting our choices without our approval. We aren’t reducing the total amount of choice in our lives so much as redistributing it, making an additional choice now to remove or alter one in the future. All we need is a helpful crew and some rope.”
Hopefully it is this context in which the new opportunity for The Conversation will take place. Now that CMS has provided physicians with some financial space, I hope that we are up to the more explicit responsibility and emotional redistribution.