Fragmentation of Healthcare Delivery as a Barrier to Participatory Medicine

Participatory medicine is the term used to describe the empowerment of patients to take a more active role in decisions relating to their healthcare, a variant of consumer empowerment (see: Interpreting the Tea Leaves: Ten Hot Trends in Healthcare, Lab Medicine, and Pathology Informatics; Participatory medicine). A recent blog note by Dr. Kevin Pho discussed the extent to which participatory medicine is influenced by the personality of the treating physician as well as that of the patient and barriers to patient involvement (see: How much guidance do patients want with their medical decisions?). Below is an excerpt from the article:

There is a spectrum of how much physician involvement patients want. Some may want physicians only to suggest and inform but leave the ultimate decision to them. Others prefer doctors to have the final say. The only way to know a patient’s preference is through a continuous relationship where that comfort level can be developed over time. After several encounters, a clinician should have a sense of how much, or how little, direction a patient needs. Sadly, two factors in healthcare today work against such a sustained doctor-patient relationship. One is the fragmentation of medical care. More patients are seeing not only a primary care physician (PCP) in a clinic, but also a hospitalist when admitted to a hospital, along with an array of specialists both in the hospital and the clinic. According to a [recent] study, Medicare beneficiaries saw an average of two primary care physicians and five specialists working in four different practices. Without knowing the patient well, each provider may differ with his or her input in the medical decision process, which can frustrate patients who may have their own ideas of how much their doctors should be involved. Next, consider the decay of primary care itself. There is a profound shortage of PCPs....Patients who cannot schedule timely primary care appointments go to the emergency department, where they encounter clinicians they’ve never met before. The shortage is compounded by what is shown in the results of [a recent survey] which revealed that 30% of PCPs were likely to leave the field, citing burnout from time pressures, a chaotic work pace, and little control over their work. Both the shortage and attrition of primary care providers worsen the odds of forming long-term relationships with patients.

One of the two major barriers to participatory medicine, cited by Pho, is the fragmentation of care. He raises a very significant point. Most of the the most significant medical decisions that  are made by a patient occur in an inpatient hospital setting. Even if a patient has a well established relationship with a PCP for ambulatory care, his or her inpatient care will frequently be turned over to critical-care hospitalists and other hospital-based specialists. These interactions may often be fleeting or disjointed and may not allow the treating physicians to develop an understanding of a patient's personality and interest in playing an active role in decision-making.

I was at a loss to come up with possible solutions to this problem, given the direction in which acute care delivery is headed. However, a critical care physician provided me with an idea. She said that palliative care specialists often provide essential continuity-of-care for critically ill patients and help avoid the mixed messages inherent in the fragmentation of physician care. This is a medical speciality that is now growing in popularity (see: Impressive Growth in Hospital-Based Palliative Care Teams). It may be that these palliative care teams may be helpful in promoting more autonomy for hospitalized patients.

Comments

[e-Patient Dave]

I couldn't agree more that there's a spectrum of patient desires, and IMO any real definition of "care" must take into account what EACH patient feels it means to "take care of me."

This is an important step forward, IMO, in our thinking about participatory medicine, which the Society http://participatorymedicine.org defines as "a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners." Some of my colleagues there, and friends in the shared-decision-making community, feel strongly that the patient MUST decide - but I think that's being paternalistic about ending paternalism! :)

People in the movement have different views; mine is that I want a manager of my care team, someone who coordinates everything and monitors that things are being done well - to my knowledge this role simply doesn't exist today, and it nearly harmed my own case five years ago. (Why the insurance industry hasn't demanded this from hospitals, I don't know.) And throughout it all, I want patients and their proxies to be as informed as they want regarding options, risks, probabilities etc.

Yeah, the fragmentation of care delivery is a big Oops, and I hope everyone involved - clinicians, patients, and advocates for all - will get on with fixing it.