Sick To Death > Chapter 5 > Reprise of the Current Situation

Sick To Death book cover This extract from the online edition of Sick to Death and Not Going to Take It Anymore! is used with permission.

Reprise of the Current Situation

American health care builds on the assumptions that the physician and the hospital are the central service elements, that short bursts of services define the course, and that categories that define care plans mostly depend on diagnosis. Quality issues revolve around performance of definitive interventions, such as operations or procedures, or focus on preventive services, such as early treatment of hypertension or childhood immunization. While these strategies meet the care needs of generally healthy people and those who have minor or curable ailments, these patterns and assumptions do not meet the needs of people with severe and eventually fatal illness (see figure 5, in chapter 2). In fact, the way that our culture defines good care actually creates barriers to reform, because it does not name or measure shortcomings in the last phase of life. When we take the Web site of Nursing Home Compare (www.cfmc.org/nhqi/ nhprqi_compare.htm) or accreditation by the Joint Commission on Accreditation of Healthcare Organizations (www.jcaho.org/htba/index.htm) or record reviews from the National Committee on Quality Assurance's Health Plan Employer Data and Information Set (www.ncqa.org/programs/HEDIS) to be authoritative standards of quality care, we may forget that they measure very little of importance to a person facing fatal chronic illness.

Continuity of the care plan and care team across time and sites is essential for patients who will be ill and disabled for the remainder of their lives. Yet physician and hospital care for those with eventually fatal chronic illness is mostly tied to episodes of acute worsening, and few professionals stay central to the care for the duration of patients' lives. Severely ill patients often see an array of specialists, typically in the office or hospital, though they may also receive many supportive services at home or in nursing facilities. Their doctors are usually only dimly aware of the nonmedical services or the patients' and families' way of life. Patients may be referred from one physician to another, or transferred from one setting to another, without the benefit of a common understanding of their situation or even a common medical record accessible to each provider. An error in diagnosing an abscess would be criticized and addressed. But shortcomings that arise from lost advance care plans (precipitating a futile or unwanted attempt at resuscitation or an unnecessary transfer from nursing home to hospital) or delays in important medications or tests are rarely seen as outrageous - or even as medical errors - but are accepted as simply part of how the work gets done (Loxtercamp 1996; Lynn, Harrold, and Ayers 1997; Myers and Lynn 2002; Lynn and Goldstein 2003).

Indeed, many providers never learn of the problems that result from shortcomings in care planning and coordination. Physicians who see a patient in the hospital often do not expect to see or hear about that patient again. But if they knew about a problem - such as the patient's lack of a plan for turning off an implanted defibrillator as his Parkinson's disease worsens, or the patient's difficulties in getting prescribed opioids delivered to her home in a poor part of the city - they might be able to plan ahead and avoid it. The current system is set up at best for short-term goals: discharge alive or error-free medication administration. The academic physician who sees patients for one month each year and spends the rest of the year in research is not expected to follow up on the patients' progress, nor is the "doc in the box" at an acute-care drop-in center or emergency room. Hospitals have no financial incentive and little legal responsibility to be concerned about the performance of a patient's care providers beyond discharge - so no one faults them for being shortsighted. Even the current researchers and commentators on error prevention and patient safety have not addressed how to deal with errors that later providers notice when they receive patients after a few transfers.

These problems are receiving sustained attention in a remarkable program of reports by the Institute of Medicine. Their most visible products to date are Crossing the Quality Chasm: A NewHealth System for the Twenty- First Century (2001) and To Err Is Human: Building a Safer Health Care System (1999b). These scholarly reports show that our care system is seriously unsafe and generally dysfunctional and that many of its shortcomings arise from not having adapted to the realities of chronic illness and its needs. The Chasm report puts forth the claim that good care needs to be safe, effective, efficient, personalized, timely, and equitable. (See excerpt, pp. 118–20.) It also outlines a vision of how to achieve those ends. Much of this book applies that vision to the neediest people, those sick enough to die.

Too often, health-care providers do not plan for - or acknowledge - the fact that patients are seriously ill and will never again be well. Advance care planning (Hammes and Rooney 1998; Hammes 2001) is not widely or consistently done. As a result, many patients miss a valuable opportunity to plan for the kinds of risks and experiences that their situation entails or for the kinds of responses they would prefer. Given the opportunity, people could make the various arrangements that would increase the likelihood of living as they wished in whatever time they have left. Because most people with chronic diseases have an unpredictable course to death, the failure to begin advance planning early in the course of the disease can lead to hasty decisions made while in distress or providing treatment "on autopilot," rather than decisions shaped by each patient's possibilities and preferences.

Gradually, this situation is improving. In Oregon now, most nursing- home residents and home-care recipients have a written plan, called the Physician Orders for Life-Sustaining Treatments (POLST), that directs important aspects of care in an emergency (Americans for Better Care of the Dying 1999). The Veterans Health Care System made advance care planning for veterans with serious illnesses a priority and part of the formula for leadership funds, strategies that got plans made for most of their seriously ill patients within a year (Americans for Better Care of the Dying 2001). Clearly, care delivery systems can improve advance care planning.

Physicians and other health-care providers often learn very little about serious disability and the potential to improve function and relieve or prevent pain and suffering (Billings and Block1997; Institute of Medicine 1997). This material is nearly nonexistent in medical school curricula and in medical and other health-care textbooks (Rabow et al. 2000; Carron, Lynn, and Keaney 1999; Callahan 1995; Ferrell et al. 2000). However, several ground- breaking programs are working to remedy this lack of training, including the Education for Physicians on End-of-Life Care (EPEC) Project (2001), from the American Medical Association; the End-of-Life Nursing Education Consortium (ELNEC) (2000), from the American Association of Colleges of Nursing; and the End of Life/Palliative Education Resource Center (EPERC) (2001). Some states have mandated at least a small amount of continuing education so that current practitioners might catch up with essential knowledge (State Medical Licensure Requirements and Statistics 2003).

In sum, the deficiencies are striking, but a number of elements are in place to make substantial and sustainable reforms possible.