It’s a process, not an event. It’s a conversation, not a document. It’s about values more than about decisions. This is how palliative care talks about advance care planning, in an effort to broaden the discussion beyond “getting the code.” Here’s a new one for you: It’s a covenant: A covenant to care. A solemn, binding agreement between clinicians and patients and their loved ones.
This notion comes from a slight adaptation of a passage from Paul Kalanithi’s When Breath Becomes Air. Paul, a star neurosurgeon just finishing residency, was diagnosed with stage IV lung cancer. The book captures his reflections on medicine, the meaning of caring and being cared for, and the experience of dying. Even before his diagnosis, catalyzed by the sudden death of a friend, he began to reexamine his own stance toward his work and his patients.
With my renewed focus, informed consent – the ritual by which a patient signs a piece of paper, authorizing surgery – became not a juridical exercise in naming all the risks as quickly as possible, like the voiceover in an ad for a new pharmaceutical, but an opportunity to forge a covenant with a suffering compatriot: Here we are together, and here are the ways through—I promise to guide you, as best I can, to the other side.Paul Kalanithi
Replace “informed consent” with “advance directive,” “authorizing surgery” with “refusing life-sustaining treatment,” and “risks” with “options,” and then read all the rest the same.
Creating the Covenant
Mostly, advance directives or advance care planning aren’t discussed with patients by clinicians at all. Or, at best, it’s done hurriedly – at admission with a patient who is in pain, exhausted, and likely confused, and with family members who are harried, maybe shocked, and tired – as a checkbox exercise to “get the code.”
What if, instead, each of us – as nurses, social workers, physicians, PAs, chaplains, aides, family members, and patients – viewed an advance care planning conversation as a covenant to care?
As a covenant to care, the act of advance care planning requires us to move well beyond the document and even the conversation. It requires asking questions and listening to the answers: “What do you understand about your situation right now?” “Given what you know, what’s most important to you?” “What do you need to achieve what is most important?” “How can we help you get there?”
Following the Plan
But it also requires sticking around and standing up to make sure the choices and desires of the patient and family are followed. Few things are more frustrating than to hear of a patient who has been thoughtfully guided through a good advance care planning process only to have their wishes and plans overturned because the document wasn’t in the chart, the proxy wasn’t in the room, or the physician/nurse/social worker/chaplain didn’t know or didn’t speak up.
Clearly, healthcare is full of discontinuities and systemic difficulties, but this must be our solemn promise: that we will always work to discover what our patients want and advocate for them at every step. It’s not enough to listen and document – a covenant requires follow through. It requires every clinician who comes into contact with every patient to say, “Here we are together, and here are the ways through – I promise to guide you, as best I can, to the other side.”
In recognition of National Healthcare Decisions Day, and as part of our covenant of care to you, all our advance care planning courses are discounted by half on April 16. Sign up on the day; complete the courses on your schedule. We hope you will find them helpful.