Ethics Committee Handbook — for New Members Orientation by Rosemary Flanigan
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Ethics Committee Handbook — For New Members Orientation by Rosemary Flanigan Center for Practical Bioethics 1111 Main Street, Suite 500 Kansas City, Missouri 64105-2116 www.practicalbioethics.org [email protected] Reviewed and Revised February 2018 CONTENTS Introduction 3 Morality and Ethics 5 The Changing Face of Medicine 10 Educating Ourselves and Others 14 Case Consultations 20 Policy Review and Development 27 Sample Policy 32 Conclusion 41 2 Ethics Committee Handbook Introduction You have been asked to serve on an ethics committee. Congratulations. This manual will introduce you to your new responsibilities and help orient you to the role ethics committee members assume in their healthcare organizations. You, your hospital, and the patients and families it serves, will benefit immensely from your participation on the committee. Before we start, however, consider the following scenarios: Your Child Has a High Fever In 1930, if your baby had a high fever, you would have given her half an aspirin and bathed her forehead with a towel. If the fever continued to rage, you might have called the family doctor. Night or day, he (almost all physicians were male) would have come to the house and prescribed care right then and there. If the child needed to be hospitalized, the doctor might himself have taken her there. In the 21st century, in places and for families well served by a modern healthcare system, the scenario looks quite different. Nowadays, concerned parents wrap up their sick child and put her in the car. They drive to the nearest Emergency Room or Urgent Care, or they place a call to 911 and the ambulance arrives at the door in minutes. Parents may ride along, but they might well be asked to wait while strangers care for their sick child in a sterile environment called Hospital. Grandma Is Dying In 1930, Grandma would probably be living with one of her children as an important part of the household. When her health worsened such that Grandma was apparently dying, the doctor might have come to the home, more as a social visit than a professional one. He might have comforted the family and held Grandma’s hand for a while. When she died, Grandma would do so in her own bed, surrounded by family. Grandma’s physician and a clergyman might have joined the family in the kitchen afterwards to drink coffee and tell stories about her past or simply to help everyone grieve. Today it is different for many or most elderly persons in their waning years. Grandma may be residing in a skilled nursing facility instead of with family, and she may have been there for several months or years. One of the aides will notice her decline and report it to the nurse on duty. The nurse will then look in on Grandma and determine whether the family should be called. The medical director may tell the nurse to call 911 to take Grandma to the hospital. If she stops breathing or her heart stops beating, resuscitation may be attempted. If CPR is “successful,” Grandma may survive long enough to die slowly in the isolation of an intensive care unit for a period of weeks or months – until death finally, inevitably comes. Or, perhaps Grandma is still living on her own when she begins to fail. In that case, a neighbor may call 911 (or Grandma’s family, if she has any). An ambulance will whisk her off to the hospital which, in turn, rushes Grandma into the ER and then intensive care. There she will die, little by little, with clinical interventions mostly prolonging her dying process. What Do Those Scenarios Tell Us? In less than a century, the practice of medicine has changed dramatically. The most dramatic characteristics are the following: • The physician, who had been sole decision maker, has become part of a healthcare team. Medicine, which had been severely limited in what it could do, has subsequently become linked to technology, which has revolutionized its practice. Ethics Committee Handbook 3 • A century ago, nature often “took its course,” but now its course is radically altered with multiple options from which to choose. • Most often, a death in the family has become a death in the hospital or long-term care facility where it is clinically “managed.” • For many patients, there may be no primary care provider, and members of the healthcare team will likely be strangers to the patient and his or her family. • Palliative care services now exist in most hospitals. • Hospice has become a mainstay in healthcare delivery, but lengths of stay are still relatively short. Many hospice patients die within a few days of admission, having accessed optimal end of life care late in the dying process. Ethics committees have been established to help patients and their families evaluate all available options and to ensure that the patient’s goals and values are known and respected. No less importantly, ethics committees are empowered to help healthcare providers fulfill their special roles and responsibilities in a technological and complicated age. This orientation manual will introduce you to healthcare ethics. It will provide examples of thinking through clinical issues ethically. It will introduce you to the history of medicine vis à vis ethics committees and present the three areas in which ethics committees are most active: education, case consultation, and policy development or review. Examples of each one will be provided. So let us begin. Benefits of Using this Manual When you have completed this manual, you will be able to exercise the following skills: • apply ethical analysis to distinguish between facts and values; • distinguish between three types of moral arguments: utilitarian (consequences), use of principles (duty‑based), and virtue ethics; • identify and describe the roles and responsibilities of ethics committees; • plan a course for continuing your education in ethics and ethical analysis; • understand palliative care and the relationship of ethics committees to palliative care consultation; • understand the organization of ethics committees and differentiate between various models of case consultation; • use your new knowledge to help your institution’s ethics committee help patients, their families, and healthcare providers establish meaningful communication and solve ethical problems. Having learned these skills, you likely will also be more confident about your contribution to the ethics committee. 4 Ethics Committee Handbook Chapter One — Morality and Ethics Each of us acts morally, or immorally, on occasion. We have learned the difference between right and wrong or good and bad actions, and strive to do good, at least most of the time. The term morality refers to our intentions and behaviors; the term ethics refers to the reasons for or against acting in a certain way. When ethics committees are asked to help others determine what is the morally right action, their tools of choice will include ethical analysis and argument. This chapter will help you develop those skills. Before we consider the work of an ethics committee, we must distinguish morality from ethics.i Morality is that collection of behaviors that we have come to learn as being “right” or “good,” “wrong” or “bad.” We learned these morals from our parents or from whomever loved us enough to rear us. We learned “the right thing to do” from their example and by rules they repeated over and over. How often we heard these adults tell us, “Don’t lie,” “Don’t cheat,” “Don’t steal,” and “Don’t spit on your sister.” And when we saw those rules borne out in practice by parents who did not lie, cheat, spit, or steal, we received a deep impression in our moral consciousness. We are always developing our moral sense, and the best way to know whether or not we are morally healthy is by examining our moral habits. Think back to the time when we were children and we heard our mothers say, “Don’t talk back to me.” We called that “sassing,” and we were in the process of developing a habit of not “sassing” our mothers. Then, a new playmate moved in down the street. What we remember about our new companion-friend is that he was loads of fun to play with and that he sassed his mother up one side and down the other. She thought it was cute! She even patted him on the head when he did it! So back home we went with our new knowledge that everyone didn’t think sassing was wrong. We tried acting like our new friend when we arrived home and got sent to bed without supper! That was the beginning of our coming to see that everyone’s morals are not the same. Our Morals Mature As we matured, so did our morals. Instead of following the example and rules of our parents simply because they were our parents, we began to make those behaviors and rules our own. For example, my habit of not stealing became deeper and firmer than ever, but if I were asked why I didn’t steal, I did not answer, “Because my mother told me not to.” That answer sufficed when I was small, but now I do not steal because stealing is an unjust act against my neighbors, taking something from them which they own and have a right to keep. Consider some of the morals you learned at home. What makes them “moral” is that they affect your very character. They make you the kind of person you are: generous and loving, a good friend, someone who can be counted on in a crisis, a hard worker for whatever will benefit another. We are defined by our moral character, not by our size, weight, hairstyle or personality.