Dr Jacqueline Glover: Financial Knowledge Is Part of Informed Consent
Informed consent is one of the principal values in healthcare, but it should include discussions about cost, said Jacqueline Glover, PhD, professor in the Department of Pediatrics and the Center for Bioethics and Humanities at the University of Colorado Denver. Glover also discussed the need to clarify the language surrounding end-of-life care.
Transcript (slightly modified) Where do values from different stakeholders overlap from an ethics perspective?
I think all different stakeholders, whether its healthcare professionals, patients, families, communities, companies, society, we all share the values of transparency and truthfulness, respecting choice within certain parameters, increasing well-being, decreasing risks, and allocating fairly. I think the least controversial overlap, and the place we should begin, is with informed consent.
On the individual level, physicians and other providers should normalize that cost is part of informed consent. If they don’t have the information about cost, they should normalize the discussion and have information about how a patient could get the exact numbers. One of our hospitals, a small hospital, has the practice of a designated oncology pharmacist. That person looks up for each individual patient, what would their out-of-pocket cost be.
I think that’s the kind of thing that we should do. Not necessarily the physician, but the physician has to normalize that discussion. It’s okay to have concerns about cost, and here’s information that can help you make decisions based on cost. It’s hard to scale, it’s a very small hospital, and having an oncologist to look up your individual out-of-pocket cost, that’s hard to scale.
But I think the least controversial is to provide information to patients who may want to say, “Oh, I didn’t realize that the benefit was only a chance at 3 more months for $150,000. I can’t afford that, and I don’t want to burden my family with that after I’m dead.” I think that’s the least controversial.
We tend to use very revealing language. We talk about withdrawing care, and we never withdraw care; we withdraw treatments or we don’t start treatments or interventions. People are afraid that if they didn’t do the next drug, the next innovative thing, that they don’t know what would happen. They would have nothing. They said, “your choice is either do this drug or have nothing.” Well, that’s not true.
As one participant said, if we had palliative care discussions alongside of discussions more frequently, patients could realize that it’s not necessarily all or nothing. It’s this or palliative care and hospice care. We never withdraw care. We just shift the emphasis on care to trying for that additional 3 months versus keeping a person comfortable and doing the things that are necessary at the end of life.