EPECEPECEPECEPEC EPECEPECEPECEPEC Sudden Illness Sudden Illness Module 8 The Project to Educate Physicians on End-of-life Care Supported by the American Medical Association and the Robert Wood Johnson Foundation

Objectives l Describe the features of sudden illness that require special skills l Know how to communicate effectively guide decision making l Explain the benefits and risks of a time-limited trial approach l Describe the features of sudden illness that require special skills l Know how to communicate effectively guide decision making l Explain the benefits and risks of a time-limited trial approach

Sudden illness... l Patient, family, caregivers under stress l Prognostic uncertainty l Chaotic environment, multiple care providers l Patient, family, caregivers under stress l Prognostic uncertainty l Chaotic environment, multiple care providers

... Sudden illness l Continuous, sequential decision making assess / reassess the goals of care l Acute symptom management l Patient, family, caregivers need support l Continuous, sequential decision making assess / reassess the goals of care l Acute symptom management l Patient, family, caregivers need support

Overview... l Provide structure l Communicate possible outcomes l Identify decision points in advance l Use goals of care to guide decision making l Provide structure l Communicate possible outcomes l Identify decision points in advance l Use goals of care to guide decision making

... Overview l Take sociocultural issues into account address differences use clear language l Manage symptoms effectively l Impact of stress on caregivers l Take sociocultural issues into account address differences use clear language l Manage symptoms effectively l Impact of stress on caregivers

Provide structured interaction l Encourage one 1° spokesperson l Identify regular communication times l Prepare early for future decisions l Set expectations for future communication l Communicate the plan l Encourage one 1° spokesperson l Identify regular communication times l Prepare early for future decisions l Set expectations for future communication l Communicate the plan

Communicate range of possible outcomes... l Avoid waiting until more is known l Discuss what is known l Discuss uncertainty openly l Provide the full picture l Identify most & least likely outcomes l Acknowledge limits of individual experience l Avoid waiting until more is known l Discuss what is known l Discuss uncertainty openly l Provide the full picture l Identify most & least likely outcomes l Acknowledge limits of individual experience

... Communicate range of possible outcomes l Discuss what is likely to happen next l Be specific and use examples l Discuss what is known l Use evidence-based information l Use gentle repetition l Identify immediate and future decisions l Discuss what is likely to happen next l Be specific and use examples l Discuss what is known l Use evidence-based information l Use gentle repetition l Identify immediate and future decisions

Identify decision points in advance l Signs that a decision may be near l Time course expected before next decision l Prepare for changing goals discussion of informed consent l Signs that a decision may be near l Time course expected before next decision l Prepare for changing goals discussion of informed consent

Use goals of care to guide decision making l Goals of care determine the treatment plan values, preferences help determine goals l Identify the degree of recovery that would be acceptable certainty recovery could be achieved l Goals of care determine the treatment plan values, preferences help determine goals l Identify the degree of recovery that would be acceptable certainty recovery could be achieved

Informed consent l Nature of the illness l Recommended treatment l Reasonable alternatives l Chance of each alternative achieving its intended goal l Burdens, benefits of each alternative l Nature of the illness l Recommended treatment l Reasonable alternatives l Chance of each alternative achieving its intended goal l Burdens, benefits of each alternative

Benefits, burdens of time- limited trials l Use while more information is gathered l Can stop life-sustaining treatment l Provides structure, helps families l May result in a poor outcome l Decision to stop may be more difficult l Use while more information is gathered l Can stop life-sustaining treatment l Provides structure, helps families l May result in a poor outcome l Decision to stop may be more difficult

Sociocultural differences... l Distrust of the medical system or physicians l Unrealistic expectations of the medical system or physicians l Any life, no matter how compromised, is worth living l Distrust of the medical system or physicians l Unrealistic expectations of the medical system or physicians l Any life, no matter how compromised, is worth living

... Sociocultural differences l Belief in miracles l Death is “the enemy” l Death should not be discussed openly l Belief in miracles l Death is “the enemy” l Death should not be discussed openly

Manage symptoms l Essential to quality of life l Relieve symptoms throughout l Permits continuation of a portion of the treatment plan l Essential to quality of life l Relieve symptoms throughout l Permits continuation of a portion of the treatment plan

Impact of stress on professionals l Stressful working conditions l Burnout common l Communication, common goals help l Provide support systems l Stressful working conditions l Burnout common l Communication, common goals help l Provide support systems

EPECEPECEPECEPEC EPECEPECEPECEPEC Sudden Illness Summary Summary