Advanced Directives to Limit Treatment: The Need for Portability

A patient's right to refuse burdensome medical care is exercised in a highly regulated health care environment. A variety of policy instruments including living wills, durable powers of attorney, and do-not-resuscitate (DNR) orders have been created to enable patients to exercise this right. It is widely agreed that health facility policies should encourage “durable” decision-making in “advance” of the need for emergency treatment. Durability means that a patient's wishes remain valid despite incompetence during a later emergency. Advanced decision-making allows for a deliberative process impossible in medical emergencies. Hospital and nursing home policies usually assume that the decision to limit treatment will be made and implemented within a single facility where the physician has recorded an advanced directive in the medical record.1, 2 Such policies do not provide for communication of advanced directives between health care facilities: directives are not “portable” as the patient moves between health care providers. Portable advanced directives could be implemented by subsequent health care providers who are called upon to perform a treatment that a patient has previously declined. The issue of portability is raised whenever a patient with an advanced directive to limit treatment is transferred from one health provider to another. The problem of portability arises because patients are often transferred between providers without provisions for transmitting advanced directives, precisely as urgent treatment issues are raised. Frail elderly, the largest class of persons likely to receive and wish to decline invasive emergency care,3 are transferred between nursing homes, hospitals, and private homes with an astonishing frequency that has been termed the “ping-pong” effect.4 These transfers are often effected by a third provider, the ambulance service, whose paramedics are authorized to perform invasive life-prolonging treatments including, resuscitation, defibrillation, airway intubation, and mechanical ventilation. In many cities, summoning an ambulance for certain complaints, like chest pain, results in a “first response” police or fire department team being sent to initiate resuscitation, if required, before an ambulance arrives. As a rule, emergency providers are unfamiliar with patients they encounter. First-response teams have no routine health care responsibilities. Seriously ill patients are often assigned to ambulance services and emergency hospitals by rules choosing the nearest available provider or specially designated critical care services.5 Thus, ambulance services or hospitals may treat any person in the community, not just a limited pool of patients. Emergency physicians often lack access to medical records, and at times, rely only on sketchy radio descriptions of a patient's condition. The speed of emergency care means that emergency rooms and even intensive care units provide the first, most invasive forms of life support autonomously before a personal physician is available to guide treatment decisions. This system of triage profoundly limits the usefulness of advanced directives, like living wills or DNR orders, from a patient's nursing home record. Being unfamiliar with those they treat, emergency providers presume that full treatment is to be given. This assumption is buttressed by laws or regulations mandating treatment by ambulance paramedics except under extreme circumstances, like decapitation or rigor mortis.6 With rare exception, ambulance services and emergency rooms do not allow paramedics to accept advanced directives to limit treatment from transferring nursing homes, home hospice providers or private physicians. This situation adversely affects patients and their families in several ways. First, the call for emergency aid, whether inspired by caregiver panic or a desire to ease the suffering of an irreversibly ill person, may result in emergency personnel initiating a new round of unwanted heroic intervention over the valid objections of family caregivers or nonphysician nursing home staff. Alternatively, crucial life-prolonging therapies may be withheld at the direction of persons who are not proper authors of such decisions. Finally, nursing homes or home care agencies, knowing that DNR orders will not be honored by emergency services, may interpret decisions to limit resuscitation as prohibiting any emergency assistance or hospitalization, thereby limiting other forms of expected and desired medical care. Ironically, ambulance and emergency room policies give special urgency to policy reform, since advanced directives to limit treatment can only be accepted by amending current policies. The enormous number of potential providers poses a formidable obstacle to policy reform. Minneapolis, for example, has 50 “first response” agencies, seven advanced life support ambulance services, 30 home-care agencies, 70 nursing homes, and seven critical care hospitals. Minneapolis is fortunate in that its ambulance services operate under a coordinating body which supported the development of a policy for portable directives in its complex system. Such policies must achieve inter-agency consensus on several complex issues including: 1) definitions of portable directives, 2) procedures for communicating and validating directives, and 3) allocation of responsibilities (and liability) among the involved providers. Definitions for portable directives should explicitly address specific emergency treatments. Unlike living wills, they should not be contingent upon prognostic or diagnostic information that is unavailable during emergency care. Nor should they require the degree of interpretation or patient familiarity that is assumed of personal physicians to whom living wills are addressed. The Minneapolis policy for ambulances, nursing homes, home-care agencies, and emergency rooms accepts specifically worded directives to limit resuscitation and endotracheal intubation.7 Documentation of portable directives must be readily available and easily validated. Policies should state that standing orders to perform treatment remain in effect until properly documented directives are presented. Minneapolis ambulances accept physician-signed nursing home records or special private-home forms prepared by home health care agencies to alert arriving ambulances. Anchorage has compiled a master list of such directives and the validity of orders is confirmed by cross-checking against the master list.8 Ambulance crews can transfer validated directives to emergency room personnel who are currently modifying hospital policies to receive them. Inter-agency policies for portable directives pose challenging accountability issues. Initiating agencies want assurance that directives will be correctly implemented; receiving agencies want assurance that orders have been properly formulated. Policies should state that the originating agency is certifying that proper decision-making practices have been followed. While the patient with their physician is responsible for making decisions to limit treatment, originating agencies are responsible for instructing physicians in provisions of the policy, monitoring compliance with principles of informed consent and proxy decisionmaking, and ensuring that properly documented directives are available to emergency personnel. Explicit definitions help ensure that treatment conforms to the expectations of patients and their physicians. A public process, involving nursing homes, home-care agencies, ambulance services, emergency rooms, and professional associations, to formulate, endorse, and disseminate these policies can clarify this division of responsibility and ease concern on these issues. Policy provisions for portable advanced directives will be necessary for the right to decline treatment to be honored in a system that presumes in favor of life prolonging care as patients are rapidly transferred between health care providers during medical emergencies. Patients and their physicians need to thoughtfully address these issues in a process of advanced planning. Emergency medical services, unfamiliar with many of those they treat, should continue to presume in favor of life-extending treatment while establishing procedures to honor advanced directives to limit unwanted treatment.