Guidelines promote better communication, "preventive ethics"
"Real-world" resource for bioethics
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The 2013 Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life were written with the nation's changing health care landscape and "the real world of clinical practice" in mind, says Nancy Berlinger, PhD, a research scholar at The Hastings Center in Garrison, NY. Berlinger is lead author of the new edition of the Guidelines and the director of the research project supporting the new edition.
The Guidelines are written for all professionals responsible for the care of patients who are facing decisions about life-sustaining treatment, or approaching the end of life, in any setting. "The book aims to be a resource to health care professionals who must think broadly about the safety of patients and the quality of care across a large system, as well as to professionals directly involved in patient care," Berlinger says.
The Guidelines come at a pivotal time for care near the end of life, according to Bruce Jennings, MA, director of bioethics at the Center for Humans and Nature in Dobbs Ferry, NY. "This is a real time of transition and consequences in the American health care system," he underscores. "The number of persons in the late stage of incurable chronic illness is growing, and end-of-life care decisions and the need for palliative care are the realities of an aging society. Health care systems will need to meet these challenges."
When the 1987 edition of The Hastings Center's Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying was published, the central issue in bioethics was to empower individuals to control their own care near the end of life and to establish the patient's right to refuse any and all medical treatment, notes Jennings, a co-author of both editions of the Guidelines.
"Historically, the late 1980s was also a time of transition and ethical turmoil in end-of-life care, although without as much focus on the cost of care as we have today," he says. (See related story on ethical issues involving the cost of care.) At that point in time, it was important to compose a clear statement of patient rights and rules for good decision-making in accordance with the patient's wishes and values, says Jennings.
The 2013 Guidelines reflect the ethical and legal consensus that has evolved in the United States since the 1987 edition, including the U.S. Supreme Court's 1990 Cruzan decision, the Patient Self-Determination Act, the Patient Protection and Affordable Care Act, and statutes and case law concerning physician-assisted suicide.
Since then, ethical standards in end-of-life care decision making have become much more institutionalized, with ethics committees and consultations active in most hospitals and many nursing homes. "Laws exist in every state to permit proxy decision making when patients lose the capacity to make decisions directly for themselves. Quality standards, such as those of The Joint Commission, now require attention to the ethical aspects of treatment decision making and communication," adds Jennings. "Virtually every health care facility and system must take this seriously."
New approach taken
Beyond clinical ethics, the book describes how and why organizational systems including quality improvement, patient safety, information technology, legal, and risk management are part of efforts to improve care for seriously ill patients. It frames all issues in the context of a changing health care system, identifying new opportunities to improve care such as collaborations between hospitals and nursing homes in the same community or between oncologists and hospice programs.
Jennings says the authors felt it was necessary to take a new approach with the 2013 Guidelines, which cover the entire spectrum of medical care near the end of life, including end-of-life and palliative care for neonates, children, and adolescents. In addition to recognizing the unique challenges with different age groups and medical conditions, the new Guidelines focus on advance care treatment planning, including setting goals of care, addressing surrogate decision making, and providing good continuity of care in various settings and stages of illness.
"Ethical conflicts can be prevented by good communication before a crisis," says Jennings. "To respect a dying person's rights in practice, it is necessary to remember that the person is a part of a larger web of meanings, emotions, and relationships."
For this reason, the Guidelines place a lot of emphasis on the communication process, such as working with family members as surrogate decision makers, defining the goals of care and treatment options to meet those goals, and, if necessary, making available processes of conflict resolution. Ethically appropriate and respectful care planning and decision making is not only best for patients and families, it is also very much in the best interest of health care professionals and institutions, stresses Jennings.
"Poor decision making is extremely costly and disruptive for health care systems and the professionals involved," says Jennings. "In health care today, Benjamin Franklin rules: 'An ounce of prevention is worth a pound of cure.'"
The authors intend for clinicians to use the Guidelines to bring themselves up-to-date on the latest thinking in the field. "No matter where you look, there are individual nurses and physicians who are highly motivated to do their work in an ethical way, and want to take good care of patients as they are dying," Jennings says. "I do think this book will be helpful for some professionals who have an opportunity to play an institutional role in ethics and need a good overview of issues and information on best practices."
In virtually all hospitals, the expertise of individual practitioners concerning ethics varies, even within specialties like palliative care. "Therefore, institutional supports like ethics committees and palliative care consultation services are very important," Jennings says. "Where they are just getting organized or need to be developed further, the Guidelines can be an important resource for the interdisciplinary teams needed for those services."
Avoid miscommunication
The Guidelines provide guidance on avoiding confusion and conflict in commonly occurring scenarios, such as when a physician or nurse asks the family of a dying patient, "Do you want us to do everything?" The book explicitly states that professionals should not use the phrase "doing everything" to represent maximal treatment, and explains why this phrase is the source of many problems.
"The Guidelines offers better ways to communicate with families, and recommends that professionals clarify what patients or surrogates mean if they request that 'everything' be done," says Berlinger.
The book also addresses how to communicate with families concerning decisions about nutrition and hydration, when a patient nearing the end of life stops eating or begins choking on food. It clarifies the right to refuse medical treatment as it applies to artificial nutrition and hydration, discusses why this decision can be emotionally difficult for decision makers and for staff, and describes how to develop a care plan for a patient who has stopped eating as he or she nears the end of life.
"Most people rely on their local hospital for inpatient care and treatment decisions, and care near the end of life may also concern seriously ill patients who are not hospitalized," adds Berlinger. "The new Guidelines offer extensive practical guidance on the decision-making process, working with families and other loved ones, addressing conflict, and other topics of perennial ethical concern."
Reference
1. Berlinger N, Jennings, B, Wolf SM. The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life: Revised and Expanded Second Edition Oxford and New York: Oxford University Press, 2013.
SOURCES
- Nancy Berlinger, PhD, Research Scholar, The Hastings Center, Garrison, NY. Phone: (845) 424-4040. Email: [email protected].
- Bruce Jennings, MA, Director of Bioethics, Center for Humans and Nature, Dobbs Ferry, NY. Phone: (914) 231-7200. Email: [email protected].
- Mildred Z. Solomon, EdD, President, The Hastings Center, Garrison, NY. Phone: (845) 424-4040, ext. 201. Email: [email protected].
