The Abandonment of the patient In profit-driven health care
Profit-driven healthcare is what we have today, but the end may be in sight, at least the former JAMA Editor George D. Lundberg (Journal of the American Medical Association) thinks so. In his explosive new book “Severed Trust: Why American Medicine Hasn't Been Fixed” he goes on the record and claims “managed care is basically over.” He said the same to me on the phone April 5,2001. I am glad that there is a book with so much straight talk – really courageous. Dr. Lundberg said, “Managed care is over because it is “no longer is controlling costs, people hate it, and now healthcare inflation is back in the double digits.” But like an unembalmed corpse decomposing, dismantling managed care is going to be very messy and very smelly, and take awhile. He told me that “everything was on the record and that he agrees totally with the two major reports from the Institute of Medicine 1) To Err is Human and the recent one far more sweeping “Crossing the Quality Chasm” A new Health System for the 21st Century, which we will discuss here.
In this new report there is a lot that is startling and radical. The authors suggest a complete redesign of the entire system and set forth ten principles to guide this transformation. They are all important, but the two that stand out the most are 1) The need for transparency and 2) The patient as the source of control. Here then are the ten basic principles followed by a quick discussion of each. 1) Care based on continuous healing relationships. 2) Customization based on patient needs and values.3) The patient as the source of control. 4) Shared knowledge and the free flow of information. 5) Evidence-based decision-making. 6) Safety as a system property. 7) The need for transparency. 8) Anticipation of needs. 9) Continuous decrease in waste. 10) Cooperation among clinicians.
Patients should receive care whenever they need it and in many forms, not just face-to-face visits. This rule implies that the health care system should be responsive at all times (24 hours a day, every day) and that access to care should be provided over the Internet, by telephone, and by all other means. What patients want and need from their care is relief from suffering and uncertainty-knowledge about what is wrong, what is likely to happen, and what can be done to change or manage that outcome. Under this new rule, care would be available through many new modes of communication, and would be accessible to patients “exactly when they need it, any day at any time, not just between 8:00 a.m. and 5:00 p.m. weekdays. The Internet is likely to be a major platform for such communication. Hospitals today rely on back-up double shifts for nursing staff and very long hours for residents and interns. Last year a newspaper headline spoke volumes “You're sick and they're tired.” Trying to get an attending physician at night or on the weekends in a big city hospital is next to impossible.
Regarding Rule 2: Customization Based on Patient Needs and Values, in the current health system, autonomy of clinical decision-making is a fundamental value. However a system that holds to this value “fails to make the best use of scientific knowledge. Variations in approaches today often reflect different local and individual styles of practice and training that may or may not be consistent with the current evidence base.” The new rule states that variations in treatment should be based primarily on differing patient needs and preferences. Doctors and other clinicians stand to gain a great deal from this change in perspective.
Rule 3: The Patient as the Source of Control. In the current system, control over decisions, access and information is typically in the hands of caregivers and is ceded to patients only when caregivers choose to or are forced to do so. For example patients are often required to obtain permission to see their own medical records. How bizarre. I remember a longtime ago in France I was toppled by a motorized cyclist and decided to have myself X-rayed for peace of mind. As I was walking out the doc on duty said, "Attendez Madame il faut pas oulier les radio – c'est a vous après tout." He was quite right these indeed were my X-rays. The new rule, if adopted, with the whole package of changes for the 21st Century, would assert that, except in very unusual circumstances, control should reside with patients.
A recent review of the literature (Guadagnoli and Ward, 1998) reveals that most patients want to be involved in treatment decisions and to know about available alternatives. No longer will they be walking around in a daze as "refugees" in some bombed out area adrift in a complicated system that has no part for them. Accomplishing the goal of shared decision-making does not necessarily require a high-technology approach. Virginia Mason Medical Center in Seattle, Washington for example provides patients with a short form called "Doc Talk" to help them prepare for a visit to their doctor.
As discussed earlier patients are increasingly able to use the Internet and other interactive technologies to help them make informed decisions about their medical treatment. There are hundreds or even millions of serious medical sites with peer-reviewed journals. There is even one that attempts to make health news entertaining by starring Dr. Drew from to MTV watchers as co-host of a celebrity-packed popular program Love line. The Online-media company Healthology will partner with Earthlink and MTV and using its network of 13,000 physicians they will create original health-related content. The CEO and President Steven Haimowitz said, "This is a strong direction for us to focus on health entertainment rather than pure educational content." Of course when one is sick entertainment is just what one needs mixed in with the info. -Right?
Huxley, if you'll permit a digression, suggested that we are in a race between education and disaster, and he wrote continuously about the necessity of our understanding the politics and "epistemology of media." For in the end, he was trying to tell us that they were laughing instead of thinking, but that they did not know what they were laughing about and why they had stopped thinking.
Back to our sweeping changes for the 21st Century by the Institute of Medicine. Rule 4: Shared Knowledge and the Free Flow of Information. Transfer of information – both scientific and personal – is a key for of care. Patients should have access to both types of information without restriction, delay, or the need for anyone else's permission. Currently the record is just an artifact of a patient visit. It is used as a record of what happened or as a tool to defend or prosecute a lawsuit. Information is key to the patient-clinician relationship. This is not a power struggle wherein the doctor keeps all the goodies and the patient is rendered childlike. The new rule represents a change in this view of the nature of health care information.
Rule 5: Evidence-Based Decision Making In today's health system, it is widely believed that the best care for individuals is based on the training and the experience of professionals. The new rule, on the other hand, could be stated: The best care results from the conscientious, explicit and judicious use of current best evidence and knowledge of patient values by well-trained, experienced clinicians.
Rule 6: Safety as a System Property Patients are injured frequently because of poor system designs. In the new system procedures, job designs, equipment, communication, and information technology should be configured to respect human factors and to make errors less common and less harmful when they do occur. The biggest challenge to moving toward a safer health care system is changing the culture from one of blaming individuals for errors to one in which errors are treated not as personal failures but as opportunities to improve the system and prevent harm. This leads to #10, and one of the most important new ways of thinking if we want to change the status quo.
Rule 7: Need for Transparency This might be the most important change along with #3, the patient as a source of control. The healthcare system should be uncompromising in its defense of patient confidentiality, a matter of great national concern. At this time in history the old boys' network still flourishes widely throughout the medical communities. The new rule calls for health systems to be accountable to the public; to do their work openly (an almost impossible dream); to make their results known to the public and professionals alike; and to build trust through disclosure, even of the systems' own problems.
Today's health care system appears to put a premium on secrecy. Although it is critical to safeguard patient confidentiality, poorly designed policies and procedures that limit the sharing of information (even at the patient's request) must change to reflect the real reason we have a system – to care for the patient. I sometimes feel as though the system takes on a life of its own what with cumbersome bureaucratic regulations and no rational reasons to explain their existence. In the future the health care system, the rule should be: Have no secrets. Make all information flow freely so that anyone involved in the system, including patients and families, can make the most informed choices, and know at any time whatever facts may be relevant, and trust their records are not being changed to cover up some mistakes that may surface a long way down the line.
Although changes in the tort system may be desirable, improving the health care system cannot wait. There is actually evidence now that open disclosure of errors may decrease the likelihood of malpractice loss (Kaman and Hamm, 1999; Pietro et al., 2000)
Rule 8: Anticipation of Needs The new system would not wait for trouble. Health care must be organized to predict and anticipate needs based on knowledge of patients, local conditions, and a thorough knowledge of the natural history of illness.
Rule 9 has to do with waste. The current system tries to conserve resources through restrictions and budget limits, withholding services and creating queues to drive down costs. This is short term and destructive. The committee that put together this plan for the 21st century believes that stressing the current system, that is, by asking people to worker harder, faster, longer, will not derive increased value. Rather, increased value will result from systematically developed strategies that focus on the following aims: safety, effectiveness, patient-centered, timeliness, efficiency and equity. The committee suggests various ways of eliminating waste that I personally do not agree with. I would rather increase our budget and call for a nationwide Universal non-profit system without the use of widespread rationing.
The last Rule is called Cooperation Among Clinicians. In the current system care is taken to protect professional prerogatives and separate roles over teamwork and cooperation. Again the patients suffer, as they always do, through this lost continuity, redundancy, excess costs, and miscommunication. Under the new rules, cooperation in patient care is more important than professional prerogatives and roles. This all sounds terrific on paper. I'll have to see it to believe it.
Throughout the entire report very little is mentioned regarding managed care, and the enormous burden it has created and the guilt that goes along with this massive failure. The publication of these two comprehensive reports would have been the ideal place to come out and say that managed care is not the ideal business model, and that substituting private healthcare for a basic human right is an abomination from a human and a business perspective.
Dorothy Guellec ZNet Commentary writer firstname.lastname@example.org