You know when you walk out of a patient's room and have that sense, “This isn’t going to go well.” The patient is sick and getting sicker, and refuses to let you talk with family or other members of her inner circle.  Should you stop at “no?” 

Today we talk with Anne Rohlfing, Lynn Flint, and Anne Kelly, authors of a JGIM article on the reasons we shouldn’t stop at “no.”  We owe it to the patient to explore the reasons behind the “no,” commonly not wanting to be a burden to their family.  In such cases, we owe it to the patient to use persuasion, for example, “I hear that you don’t want to be a burden.  And I’m worried that there may come a time when you have trouble making decisions for yourself.  We will have to reach out to your daughter then to help with decisions. Imagine her hearing for the first time that you’re sick, that you’re hospitalized, that you’re in the ICU, and that you can’t make your own decisions?  That’s a huge amount of news all at once. It would help her to prepare if we could start talking with her now.” 

We also talk with Emily Largent, a bioethicist and former ICU nurse, who argues in a Hastings Center Report for an expanded vision of patient consent.  Consent is often viewed as “all or nothing” for any specific decision.  Emily and colleagues have argued for a wider view of consent that continues to involve patients whose consent may fall in the gray zone - able to express some goals and values, hopes and fears - but not able to think through the complexities of a major decision.  I’d hazard that maybe half the patients I care for at the intersection of geriatrics and palliative care fall in the gray zone.  Emily’s expanded notion of consent is grounded in the concept of “relational autonomy.”  Relational autonomy was was first introduced to bioethics by feminist scholars, who observed that most people do not make decisions as isolated islands. Rather, most of us live and make decisions in relationship to one another.  Emily’s notion also borrows from pediatric bioethics, in which parents can look to young children for assent and input on decisions, empowering them to some extent.  Invoking this principle, Emily argues for an expanded role for patients in the gray area and their inner circle working together along a spectrum of cooperative decision-making.

My favorite line from Emily’s paper: “Geriatric assent has not been widely adopted in clinical care, but bioethicists should advocate for this, as adoption of partial-involvement strategies can prolong the period in which individuals are (appropriately) engaged in decisions about their health care.”

Enjoy!

-@AlexSmithMD