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Living with AIDS:

Experiencing Ethical Problems

Foreword by Edmund D. Pellegrino, M.D.

Publisher: http://www.sagepub.com/book.aspx?pid=2566  

Used copies: http://www.Amazon.com 

Book Description

Persons with AIDS experience particularly difficult ethical problems because AIDS is life threatening, communicable, chronic, and stigmatizing. And even though ethicists and clinicians have written extensively about ethical problems related to AIDS, scholarly literature lacks research on the actual lived experiences of those facing such problems. Living with AIDS presents real-life problems and solutions as told by actual people living with AIDS, in their own words, and authentically illustrates their moral difficulties and resolutions revolving around such issues as relationships, sexuality, personhood, chronic illness, death, and discrimination. Their stories show how living with AIDS and its accompanying difficulties can lead to ethical living and creative problem solving on an individual level--as well as institutional, professional, and societal levels. Living with AIDS will appeal to anyone interested in ethical living, as well as health professionals who wish to understand better the experiences of PWAs. This illustrative volume will also be of immense value for instructors teaching courses in AIDS, health, and ethics.

From Living with AIDS

The day after Jeffrey died from AIDS, Sonia, his mother, called me to say that he wanted his death to be part of the research. She explained that his death was "good" because her ethical problem ("Although I value the expertise of my son's doctor, should I get another doctor who has a heart?") was effectively resolved.

Sonia said that she obtained Jeffrey's release from prison so that he could go home to die, and she quite her job to take care of him. During that time, they said what they wanted to say to each other. He asked to be cremated and have her scatter some of his ashes over his beloved ocean and forest and keep the rest at home so that she could talk to him.

A week before dying, Jeffrey was hospitalized. Because his regular physician was not available, Jeffrey was assigned to a physician who, Sonia said, "cradled my heart." This physician comforted her by holding her hand and treating Jeffrey respectfully. He had a cot put in Jeffrey's room so that Sonia could stay overnight. All week, he visited them regularly, and he told them that they were special. He could not do much for Jeffrey, but because he nurtured Sonia, she was able to nurture her son. She said that God brought him for Jeffrey's last week.

Sonia and the physician made the decision not to put Jeffrey on life support. "Why prolong the inevitable?" she asked. She said that she and Jeffrey were not afraid. Because they were at peace, she gave him permission to die, and he gave her permission to go on with her life.

Since Jeffrey was lying peacefully, Sonia went to brush her teeth. He waited for her so that she would be there when he died. When she came back, his breathing became less and less, and it finally stopped. He died as "I cradled him in my arms." His death was "peaceful and good, nothing to fear."

Sonia cried as she described the loss of her son. To be close to him, she sat in his room where she felt his presence. She listened to his music, and she talked to him. She said she could see him smiling and riding bareback in the wind, feeling free and peaceful.

Reviews

From Ethics News

In a fascinating new book by Miriam E. Cameron, persons with AIDS discuss a relatively unexplored aspect of their lives. . . . This book is recommended for providers of health and other support services to PWAs (and persons significant to them) and to anyone who wants to better understand the moral dimensions of the AIDS epidemic. It uniquely describes what it is like for persons with AIDS to face ethical conflicts and the choices and decisions they make.

From Oral History Review

Cameron brings us closer to understanding the complex emotions and fragmented, sometimes self-serving decision making of the victims of this twentieth-century plague, and teaches us that in helping them to tell their stories we may help prevent others from being infected. . . . It is clear throughout this remarkable work by an interviewer new to the practice of oral history that her questions helped her subjects think their way through their own problems. Living with Aids can be a guidebook and a source of strength for AIDS victims because of Cameron's use of what she calls "ethical listening and what experienced oral history practitioners often refer to as "non- judgmental" or "empathic" interviewing techniques.

From the Journal of Medical Ethics

The author's skillful eliciting and selection of these simple and direct expressions of the human conflicts arising from this epidemic will be thought-provoking for people who want to understand it better, whether they are familiar with the issues or not and whether they are health care workers, ethicists or lay people.

From Medical Sociology News

This two-hundred page paperback provides a fascinating portrait of some of the many questions, concerns and problems with face those with chronic HIV infection and AIDS. . . . The book is fascinating and eminently readable for its account of life for those with HIV infection AIDS. It will be useful for researchers, social scientists, health care workers and, probably above all, people whose lives are in some way affected by HIV.

From Journal of Professional Nursing

This is an excellent book for practicing nurses and nursing students because it invites the reader to be part of each PWAs personal life. It moves the reader far beyond a technical, intellectual approach to AIDS. One is aware of the very human dilemmas facing each of the persons interviewed. . . .It is, in fact, a book for all who are concerned about the world today. For this is a book about the people who are being decimated by the plague of the 1990s. For 'they' are we."

From Religious Studies Review

Cameron describes with sensitivity the struggle of patients with the meaning of life and the search for a good life in the face of death. Because of the fundamental nature of the questions, the author's descriptive ethics are not only interesting for people dealing with AIDS. The book illustrates the need all chronically-ill people have for emotional support, understanding, and communication.

From Contemporary Sociology

Cameron's book contributes to the study of descriptive microethics and to nurses' increasing involvement in studying ethics. She defines ethical questions broadly and covers a variety of ethical and existential questions that people with serious chronic or lethal disease face as they try to manage their lives. . . . [This volume] is a novel addition to the emerging literature in ethics in nursing.