post by Bill Gardner
Robert Truog has a magisterial NEJM review of the evolution of medical ethics and the evolving relationship between patients and doctors. It is natural that he would structure the review in a discussion of this relationship because, as he notes,
The relationship between patients and doctors is at the core of medical ethics, serving as an anchor for many of the most important debates in the field.
In that relationship, the doctor has the duty to try to learn what the patient needs and what the patient wants, so that she can serve as the patient's agent to promote his well-being.
But increasingly, a longterm relationship between a patient and a doctor isn't the primary context in which care happens.
- Many patients are seeking care in non-traditional settings: an urgent care in a WalMart may be the future of primary care. Even if patients would prefer an ongoing relationship with a specific provider, it may not fit the time or financial constraints on their lives. This isn't just an issue for the poor. I live and work in two cities 2400 km apart, and I meet many people with similar lives. It doesn't make sense for me to try to get care from one physician.
- Many primary care practices are not structured to facilitate sustained one-to-one care relationships. In many practices, the first doctor who is free grabs the chart at the top of the rack, and the next patient on the list is called. Getting your primary care from a single PCP is increasingly a high cost 'boutique' alternative.
- Care of any complexity involves a team of disciplines, including nurses, pharmacists, and many technicians. The latter are critical to successful care, and are not failed attempts at being doctors. Nurses are, often, the leaders of follow-up care and the central channel for communication with patients.
- The amount of medical data / patient in modern health systems increases exponentially, and for patients of any complexity it often exceeds the ability of a physician to usefully synthesize it.
- We are beginning to see primitive dialogues between robots and patients as important channels for medical information.
This means that knowledge of the patient is not held by a clinician, but is difused across many persons and places in the health care system. All too often this has the unfortunate consequence that no single health care provider has responsibility for the patient's well-being, and that elements of knowledge about the patient are disconnected, and cannot be assembled to guide action. Bioethicists and many others have viewed the difusion of personal relationships between doctors and patients as threats to the quality of care. Which they may well be, but the world of close relationships between the country doc and his patients, if it ever existed, is not coming back.
So how should we reframe bioethical discussions? I think we should stop imagining health care communication as occurring primarily on an interpersonal channel between the doctor and the patient. Knowledge about the patient, if it is anywhere, is in the system, so we should begin to think through what it would mean to have health care systems be responsible to know about what patients need and want, and to serve as the patient's agent.
Many issues arise when you see care as the job of a system.
- If the system is responsible for your care, then arguably your detailed health information ought to be available to any provider in the system you happen to contact. Care is likely better if information can flow freely within a health care system -- for example, your gastro-enterologist ought to know if you are taking an antidepressant. What are the limits on the appropriate sharing of knowledge within an organization? How much control can/should patients have over intra-organizational flow of personal health information?
- Which patients is a health care provider responsible for? Every subscriber to a system? How do you hold individual providers accountable if every provider is responsible for every patient?
- Traditional health care is reactive to patient demand: care is supplied to the patients who come in an ask for it. But a prevention-oriented health care system can reach out and prompt patients to get health care services that the system infers that they might need. What are the proactive obligations of a system? What are the ethical constraints on a system? Should patients have to opt-in to preventive outreach?
- A system has clout that an individual doc does not. A children's hospital can lobby to improve the diet in the local school lunches. Should it, or is this the prereogative of the parents in the neighborhood?
- A smart system can interact with patients carrying smart phones or tablets in lots of places outside clinic walls. Such interactions can be used to get far more health information on patients than can be gathered by a doc in annual 15 minute office visit. How do you handle consent and confidentiality in health conversations that may be occuring in public?