initiate treatments without adequate consideration or explanation of their potential to cause additional suffering while offering no or virtually no potential for benefit. Because clinicians, patients, and families are reluctant to discuss death and dying, opportunities are routinely missed to plan responses for the reasonably predictable crises associated with many fatal medical problems. Failures to prepare for death may deprive families of the chance to cherish their last time with a loved one and say their final good-byes.
Further, if children or adults require complex care from multiple providers of medical and other services, they and their families may find this country’s fragmented health and social services systems to be confusing, unreliable, incomplete, and exhausting to negotiate. Even experienced physicians, social workers, and others are frequently frustrated and stymied by these systems. At the same time, patients, families, and providers may feel that they are in a constant battle with health plans over coverage and payment policies that favor invasive medical and surgical procedures, discourage interdisciplinary care, and undervalue palliative services, including the time needed to fully and effectively inform and counsel patients and