Ethical Foundations of Palliative Care for Alzheimer Disease

SIXTEEN: Ethical Dimensions of Alzheimer Disease Decision Making: The Need for Early Patient and Family Education

mc h a  t e r s i x t e e n Ethical Dimensions of Alzheimer Disease Decision Making The Need for Early Patient and Family Education Linda S. Scheirton, Ph.D. She had been with us for one month. She seemed somewhat detached or depressed, perhaps. She stood in the kitchen at dusk, with the last vestiges of light coming through the window illuminating her frail figure as she moved among the shadows. You could see the individual strands of grey hair recklessly uplifted in slight disarray, as the stream of remaining light gave her head an almost angelic appearance. As her son-in-law walked into the room, she politely asked,“Would you like some coffee, honey?” “No, thank you, I usually don’t drink coffee this late in the day,” he answered .“I was just making some coffee,” she replied. All of a sudden it seemed to dawn on her. She appeared to be perplexed. The furrowed brow accentuating the deep wrinkles in her once-beautiful face provided clear evidence of her confused state of mind. She held on to the edge of the counter as if to stabilize herself before walking around to where I was standing. Her faded blue eyes peered deeply into my mine and she asked,“Linda, is this morning or evening?”“It is evening, Mom,” I said softly. Alzheimer disease (AD) begins insidiously with a gradual but progressive deterioration. As chronicled in the preceding vignette, disorientation of time and place as well as changes in mood and behaviors are just a few of the warning signs of AD. Although the course of the disease is generally prolonged and a reasonable quality of life can often be enjoyed during much of that time, in the end the disease erodes all cognitive and functional abilities of the patient and leads to total dependence on caregivers (Ham, 1997). Indeed, AD patients rarely suffer alone because the disease also takes its toll on their family and friends. But if diagnosed in the early stages, patients often retain the ability to guide medical and domestic decisions to be made during later stages of the disease process, thereby fostering the quality of their own care as well as mitigating the burdens of caregivers. Health consumer education ideally is initiated at this point of early AD, before problems encountered with the disease escalate into crises. Education can empower the patient and give him the tools to successfully navigate through each stage of the disease. What most recently diagnosed Alzheimer’s patients need to know is how to live with the disease, what to expect, how to get care and treatment , how to deal with disease-related problems when they arise, and how to ensure that their wishes are honored. Hence, educational programs should provide clear and concise information regarding diagnosis procedures, treatment options , the effects of the disease, and ethical treatment guidelines (Alzheimer Society of Canada,1995).In addition to these health care related issues,patients and their families will benefit from education about estate planning, living wills, powers of attorney, and choices for guardian or conservatorship. A wealth of educational resources, training modules, and references for Alzheimer disease (AD) patients related to current research, diagnostic testing, activities of daily living, social services, home health aides, nursing homes, hospices, and support groups is easily accessible via local, regional, national, and international health organizations, universities, and on the web. Explicit instructions on how to access these resources are necessary to enable a person to navigate through the wealth of educational materials available. This chapter presents an educational agenda, utilizing the following ethical guidelines and principles for Alzheimer care: truthfulness in disclosing the diagnosis of AD; availability of comprehensive information about the progression of the disease; respect for individual choice by facilitation of voluntary transfers of decision making; enhancement of quality of life; prevention of harm to self and others; voluntary participation in genetic testing and research; and justice for caregivers. 262 Organizational Ethics Issues m Truthful Communication of the Diagnosis The educational process begins with an early and accurate diagnosis. A proper diagnosis is important for four reasons. First, patient or family concern can be eliminated if it is unwarranted. Second, non-Alzheimer conditions that are treatable can be identified, as emphasized in chapter 3. Thirdly, the earlier that AD is diagnosed, the more likely some symptoms may respond to...