The Golden Thread

THE GOLDEN THREAD M. Margaret McDonnell, RSCJ Many people who are dying become "outliers": individuals whose health care needs exceed their insurance coverage. M. Margaret McDonnell, a trained nurse in the Society of the Sacred Heart (RSCJ) tries to put words on what happens to a person during this time. She uses narrative ethics as the underpinning of decision-making processes presented in this book. Principles must be considered, but in the context of the human story, not as the starting point. When patients are not involved in their own decision-making process, ethical issues can abound. For example, an aging couple may disagree on the correct course of care, with the dying wife wanting less treatment, and the husband insisting on continuing her aggressive treatment. At times physician or nurse practice patterns might be inconsistent with allowing a sick or dying person “full range of motion” in their care thus "stunting" their inner growth. This can result in compromised care. Because of an illness, patients are often unable to be decision - participants, and costs of their care can then soar. Having been taught by patients, McDonnell believes in their struggle, and she explains what she has seen so that people can make decisions in the midst of terrible suffering. This Community Health Care Ethics Manual has a three-pronged approach: (1) identify outliers (i.e. those whose care exceeds the limits of their insurance); (3) a process that can be used in addressing health care decision-making and (3) deals with the ethical issues that lay behind some expenditures. In this book, actual patient narratives are followed by reflection on ethical issues embedded in each story. It also incorporates materials from her various lectures and courses. McDonnell writes for all in the decision chain such as nurses, doctors, and members of hospital ethics committees. She has adapted her materials over the years to real-life situations. For example, hospital ethics committee members learn to “do ethics," but at the same time they become increasingly sensitive as they watch people change during illness and dying. McDonnell slowly modified her methodology, always putting personhood first as decisions were made. As a result people on ethics committees became participants in the great story of human growth. Sick people were honored as their life stories became known. The challenge to ethics committees became: is there a way to “manage” practice patterns so that patients can be involved in the process of healing? Can providers choose specific behavior patterns so as to encourage patients to be a part of these decisions? Patients must have control over their destiny. This becomes life - giving at a time when life is threatened. This is patient autonomy; this is choosing life, even in the process of dying. In her capacity as a community healthcare ethicist she frequently went into homes, and even conducted curbside encounters when she met people on the street. People who lived in her local township community for many years knew and trusted her, and each day patients called or came to the house, or else she would go to them. She followed up with people after the initial encounter to be sure things were “on track” and those situations were resolved. Several calls even came during the night, and she would often go to homes in the middle of an emergency. McDonnell developed this model and quickly moved into the doing of community health care ethics, gathering families around their loved ones often in their homes as major life decisions were made.