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Ethics and Law

The ethics of care requires a delicate balance between the conventional practice of medicine and the wishes of the patient, appreciating that each human situation is unique. Not only should treatment options and likely outcomes be considered, but also patient values, hopes and beliefs. Patients and families must be properly informed to make appropriate treatment decisions and help reset the goals of care at all stages of the illness.

VIDEO: Pain, Ethics, and Palliative Sedation

Every palliative case presents its own ethical dimensions and dilemmas. The following case illustrates the diverse ethical and legal issues embedded in a common palliative care situation.

Mr. W. was a 50-year-old construction worker, separated from his wife (though still legally married) and with a teenage child. He had a history of laryngeal carcinoma diagnosed one year before. He had a total laryngectomy and received radiation therapy, but the disease recurred. He was admitted to the hospital for what turned out to be a final 7 weeks of hospitalization. His admission was initially prompted by increased shortness of breath and facial swelling following chemotherapy. His hospital stay was complicated by a left carotid erosion for which he had a bedside carotid ligation. He spent 2 weeks in the medical intensive care unit (MICU) for stabilization and treatment of pneumonia. Mr. W. had elected the "Do-Not-Resuscitate" option.

His hospital course was marked by increased pain, facial swelling, periodic seizures, a second pneumonia and progressive weakness. At all times, he was bed bound and artificially fed. His pain was relatively well controlled but the facial swelling was uncontrollable. Communication was possible to some extent through hand signals. Decisions were made after lengthy explanations to the patient and his wife, his designated health care agent.

In the final weeks of life, Mr. W.'s condition further deteriorated. His ability to communicate markedly decreased. In response to his enormous suffering, palliative care staff recommended sedation for Mr. W. Although his wife supported the decision, several nurses and house officers were concerned that such an intervention would go beyond the boundaries of appropriate symptom management. Mr. W.'s feeding tube was withdrawn, in accord with symptom control, comfort measures and the patient's wishes.

The patient, completely unresponsive in the last 5 days of his life, died very peacefully.

In this complex case, many questions can be raised
What are the ethical issues?
What constitutes an ethical problem?
Are ethical questions different from legal questions?
Who decides?
How do we define consent?
Are advance directives necessary?
What does it mean to be DNR (do not resuscitate)?
Is withholding and withdrawal of treatment identical? Are they ever acceptable?
Can we ever stop artificial nutrition and hydration?
Is sedation an option at the end of life? How does sedation differ from physician-assisted suicide (PAS) or euthanasia?

This case suggests many more questions than answers. Although the following overview might simplify the understanding of the multiple issues embedded in a clinical case, one should remember that ethics cannot be equated with an "easy recipe" for solving problems. Ethics is a complex domain and needs ongoing learning, discussion and reflection, essential to the practice of good medicine.

Since ethical decisions are sometimes complex and difficult, in most major hospitals an ethics committee is available to guide the medical team in the decision-making process. The modalities of access vary according to the facility. Most ethics committees are accessible to families, patients and medical teams.

Cardinal Principles

What Is Ethics?
Ethics is a generic term for different ways to examine moral life. Clinical ethics is a "practical discipline that provides a structural approach to decision-making that can assist health professionals to identify, analyze, and resolve ethical issues in clinical medicine" (Jonsen AR, Siegler M, Winsdale WJ. Clinical Ethics. 3rd ed. McGraw-Hill, NY, 1992). The ethics of a case arises out of the facts and values embedded in the case itself. Ethics in palliative care is a matter of "practical reasoning" about individual patients. Although there are many approaches proposed by ethicists for the analysis and resolution of difficult situations, the most commonly used are organized around principles, such as respect for autonomy, beneficence, non-maleficence and justice. The principles are balanced and weighed in any particular ethical situation. Sometimes they come into conflict and create an ethical dilemma.

What Are the Basic Ethical Principles?
RESPECT FOR AUTONOMY recognizes the right and ability of an individual to decide for himself or herself based on his or her own values, beliefs and life span. This implies that the patient may choose a treatment that might differ from the advised course of care. The patient's decision should be informed and well-considered, reflecting his/her values. It is acceptable, for example, that a patient refuse certain therapy according to his own religious beliefs. Many factors interfere with the expression and appreciation of the patient's preferences: compromised competence of the patient, stress of illness, comprehension difficulty, etc. Respect for autonomy implies truth telling and exchange of accurate information about status, goals of care, options and expectations.

BENEFICENCE requires that the physician prevent or remove harm, while doing or promoting good. It is the most commonly used principle in the application of care. It implies that the health care team should do positive acts in maximizing the benefits of treatment. Examples include: delivering effective and beneficial treatments for pain or other symptoms, providing sensitive support, and assisting patients and families in any way possible.

NON-MALEFICENCE supposes that "one ought not to inflict harm deliberately." Violation of this concept may include offering information in an insensitive way, providing inappropriate treatment of pain or other symptoms, continuing aggressive treatment not suitable to the patient's condition, providing unwanted sedation, or withholding or withdrawing treatment.

JUSTICE relates to fairness in the application of care. It implies that patients receive care to which they are entitled medically and legally. Justice can be translated into "give to each equally" or "to each according to need" or to "each his due." Different theories of justice debate what is "due," "equally," or "priority." Organ transplantation, selection in the emergency room or admission to the inpatient or outpatient hospice unit are applications of this principle. Who should have priority? The principle of justice implies a consideration for a common good and societal considerations.

How Law Differs from Ethics
In the administration of care, one cannot ignore the different legal requirements relevant to each situation. Although some cases might be defensible under ethical principles, they might not be permissible under legal provisions. Law is defined as minimal ethics, in the sense that it is based on the values of a society. It is also the reflection of a societal consensus on particular issues. It varies from society to society, from state to state. In the U.S., law is divided into two systems: federal (across the states) and state (within the state). It can be made by:

Judges (common law)
       Example: SupremeCourt of the United States
     recognition for the right to refuse medical care

Legislatures (statutory law)
       Example: Uniform Definition of Death Act

Executive agencies (regulatory law)
       Example: Regulations for Protection of Human Subjects of Research

Most end-of-life issues fall under common law (case by case decided by the tribunals, such as consent/withholding or withdrawal of treatment) or statutory law (different state law, e.g., physician-assisted suicide/do-not-resuscitate law).

Legal provisions impose limits on decisions that might be ethically sound but nevertheless risky. They provide a framework to guide certain decisions or practices. This framework is defined in terms of requirements that need to be fulfilled in order to avoid liability.

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