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Introduction to End of Life. Kubla-Ross Stages of Dying. Denial Anger Bargaining Despair Acceptance. Defining “Good Death”. Good Death A death that has desirable or positive qualities? A death that is morally admirable? A death that promotes or enhances well-being (beneficial)?
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Kubla-Ross Stages of Dying • Denial • Anger • Bargaining • Despair • Acceptance
Defining “Good Death” • Good Death • A death that has desirable or positive qualities? • A death that is morally admirable? • A death that promotes or enhances well-being (beneficial)? • A death that is agreeable or pleasing? Or • Making the best of an “undesirable” situation
Defining “Good Death” R Smith, ed, British Med J 320:129-30, 2000. Principles of a Good Death • To know when death is coming and to understand what can be expected • To be able to retain control of what happens • To be afforded dignity and privacy • To have control over pain relief and other symptoms • To have choice and control over where death occurs • To have access to information and expertise of whatever kind is necessary
Defining “Good Death” R Smith, ed, British Med J 320:129-30, 2000. Principles of a Good Death • To have access to spiritual or emotional support • To have access to hospice care in any location • To have control over who is present and shares the end • To be able to issue advance directives which ensure wishes are respected • To have time to say goodbye and control the timing • To be able to leave when it is time to go, and not have life prolonged pointlessly
Defining “Good Death” K Steinhauser, et al, Ann Int Med 132:825, 2000. “In Search of a Good Death: Observations of Patients, Families, and Providers” 6 Major Components Identified • Pain and Symptom Management • Clear decision making • Preparation for Death • Completion • Contributing to others • Affirmation of the whole person
Defining “Good Death” D Carr, Rutgers University, 2000. “A Good Death for Whom?” Introduction summarizes literature on “good death” • Minimizes pain • Matches patient and family preferences • Maintaining relationships with loved ones • Accepting one’s impending death • Dying at the end of a long and fulfilling life • Not feeling like a burden to loved ones
“Dying Well” Ira Byock, MD • Perhaps a better goal than a “good death” • Death is viewed as the final stage of life, during which continued growth and development can occur. • In addition to relief of physical and emotional symptoms additional landmarks that one should strive to achieve include: • Asking and accepting forgiveness • Expressing love • Acknowledging self-worth • Saying good-bye
How can we assist the terminally ill in “dying well” or achieving a “good death”?
Care of the Terminally Ill “Pain should be adequately controlled, human dignity maintained, and isolation from family avoided. These last two, in particular, tend to be overlooked in hospitals where the intrusion of life-sustaining apparatus can so easily detract from attention to the whole person….” Isselbacher KJ, Adams RD, Braunwald E, et al: The Practice of Medicine. In: Isselbacher KJ, Adams RD, Braunwald E, et al (eds): Harrison’s Principles and Practice of Medicine, 9th edition. New York: McGraw Hill, 1980.
Care of the Terminally Ill “The physician should provide or arrange for emotional, physical, and spiritual support, and must be compassionate, unhurried, and open.” Isselbacher KJ, Adams RD, Braunwald E, et al: The Practice of Medicine. In: Isselbacher KJ, Adams RD, Braunwald E, et al (eds): Harrison’s Principles and Practice of Medicine, 9th edition. New York: McGraw Hill, 1980.
Care of the Terminally Ill “Physicians also must be prepared to deal with the feelings of guilt that almost invariably afflict the members of a family when parent or child or spouse has died. They must be assured that everything possible has been done.” Isselbacher KJ, Adams RD, Braunwald E, et al: The Practice of Medicine. In: Isselbacher KJ, Adams RD, Braunwald E, et al (eds): Harrison’s Principles and Practice of Medicine, 9th edition. New York: McGraw Hill, 1980.
Care of the Terminally Ill “There is no ironclad rule that the patient must be told ‘everything,’ even if he or she is an adult and the head of a family. How much the patient is told will depend on the patient’s own desire and character, the wishes of the family, the state of the patient’s affairs, and perhaps religious convictions.” Isselbacher KJ, Adams RD, Braunwald E, et al: The Practice of Medicine. In: Isselbacher KJ, Adams RD, Braunwald E, et al (eds): Harrison’s Principles and Practice of Medicine, 9th edition. New York: McGraw Hill, 1980.
Care of the Terminally Ill Who is distressed? • The physician Who thinks the patient is hopelessly ill? • The physician How can the physician provide the patient with hope if s/he is distressed and thinks the patient is hopelessly ill?
Care of the Terminally Ill HOPE: Physician’s Responsibility • End of Life Care • Goals of Care: Symptom Management • Provide HOPE by setting achievable goals with patients and families while avoiding unrealistic expectations • Focus on symptoms and quality of life