Hari's Random Thoughts by Hariharan Ramamurthy: Ethical dilemmas, value conflicts , administrative rules and legalities

Sunday, January 29, 2017

Ethical dilemmas, value conflicts , administrative rules and legalities

Much of the material is exerpts from

http://www.netce.com/coursecontent.php?courseid=1014&scrollTo=BEGIN#chap.4

what a patient wants for himself may not be in unison with what his family or physician believes should be done. Even between seemingly alike individuals, with similar education and background, value systems may prove to be radically different. What if a patient refuses life support, but the family insists they want every lifesaving measure taken? Conversely, what if a comatose patient's family members want life support and other interventions stopped and a physician refuses to discontinue therapy?

physicians acting in a paternalistic manner toward their patients. Questions regarding many issues, such as organ transplantation, assisted life support, patient self-determination, appropriation of dialysis, in-vitro fertilization, cloning, and even the use of generic drugs, did not arise. The reason is simple: these techniques and procedures were not available.
Prior to the 1960s, medical care decisions were part of the paternalistic role of physicians in our society. Patients readily acquiesced care decisions to their physicians because they were regarded almost as family. What drove this resolve of patients to acquiesce their medical care and treatment decisions to their physicians? David Rothman, as discussed in his book, Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making, believes physicians were given such latitude by their patients because they were well-known and trusted by their patients and the community in which they practiced [3]. There were essentially no specialists. One physician took care of a patient and family for a lifetime. The frontier physician often knew the patient from birth to adulthood, made house calls, and was a family friend who knew best what the patient should do with a healthcare concern. Since the 1960s, physicians have generally become strangers to their patients.

Extensive publicity about three research projects resulted in the establishment of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The first project involved elderly patients with chronic illness who were injected with live cancer cells in an effort to discover whether the cells would survive in a person who was ill but did not previously have cancer. No consent was obtained from patients or family members before proceeding.

The second project began in 1932, when the Public Health Service initiated a syphilis study on 399 black males from Tuskegee, Alabama. The goal of the study was to observe the men over a period of time to examine how the disease progressed in individuals of African descent. When the study began, there was no cure for the disease; however, fifteen years into the study, penicillin was discovered to be a cure for syphilis. The research participants were never informed, and treatment was withheld in spite of the fact that by the end of the experiment in 1972, 128 men had died either from the disease or related complications [21].

Finally in 1967, children with mental retardation at the Willowbrook State School, New York, were given hepatitis by injection in a study that hoped to find a way to reduce the damage done by this disease. Although consent was obtained in this study, the consent sometimes had an element of coercion. Gaining admission to the school was difficult and parents were given a guarantee their child would be admitted if they consented to the participation of their child in the study.

National Commission for the Protection of Human Subjects was created in 1974 by public law. Finally, in 1979, the commission published The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research

Ethical Principles and Guidelines for Research Involving Human Subjects

A. Boundaries Between Practice and Research

B. Basic Ethical Principles

C. Applications

Informed Consent
Assessment of Risk and Benefits
Selection of Subjects
1973, the first edition of the Hastings Center Studies

Remarkable advances were projected in the areas of organ transplantation, human experimentation, prenatal diagnosis of genetic disease, the prolongation of life, and control of human behavior.

In November 1978, The President's Commission for the Study of Ethical Problems in Medicine and Medical and Biobehavioral Research was created. Its members began work in January 1980. The United States Congress charged them with conducting studies and reporting on a number of topics, including the definition of death, informed consent, and access to healthcare. By spring 1984, the commission had published nine reports addressing many of the problems facing the healthcare system.

more attention began to be paid to the allocation of resources and the effectiveness of complex treatments, especially in terms of the quality of life associated with the prolonging of lives.

It was the New Jersey Supreme Court Decision in the Karen Ann Quinlan case that brought bioethics to the level of the individual through the media and transformed physician paternalistic authority into patient-physician shared decision making.

the U.S. Supreme Court Decision in the Matter of Nancy Cruzan (1990)

the court did decree that if an ethics committee agreed with Quinlan's physicians that there was "no reasonable possibility of Karen's ever emerging from her present comatose condition," and if the family and Ms. Quinlan's guardian agreed, the ventilator could be withdrawn [10]. The expectation was that Karen would die following the weaning off the ventilator. In fact, Ms. Quinlan was successfully weaned off the ventilator and lived until June 1985. However, she never regained consciousness in that time.

neither individual could speak for herself once the actual situation requiring a decision presented itself.

As long as the now incompetent individual had provided evidence at an earlier time of her life, while competent, of what healthcare decisions she would make under specific conditions, her voice could be heard as if she was competent and making the decision during the present time.

"That the intent of our ward, if mentally able, would be to terminate her nutrition and hydration."

"That there was no evidence of substance to cause belief that our ward would continue her present existence, hopeless as it is, and slowly progressively worsening."

"That the co-guardians, Lester L. and Joyce Cruzan, are authorized to cause the removal of nutrition and hydration from our ward, Nancy Beth Cruzan."

Terri Schiavo case was a right-to-die legal case in the United States from 1990 to 2005, involving Theresa Marie "Terri" Schiavo, a woman in an irreversible persistent vegetative state. Schiavo's husband and legal guardian argued that Schiavo would not have wanted prolonged artificial life support without the prospect of recovery, and elected to remove her feeding tube. Schiavo's parents argued in favor of continuing artificial nutrition and hydration and challenged Schiavo's medical diagnosis.^[1]^[2] The highly publicized and prolonged series of legal challenges presented by her parents, which ultimately involved state and federal politicians up to the level of President George W. Bush, caused a seven-year delay before Schiavo's feeding tube was ultimately removed.

Competent patients have a constitutional and common-law right to refuse treatment.
Incompetent patients have the same rights as competent patients.
The interests of the state opposing this right are virtually nonexistent in the case of competent patients and very weak in the case of incompetent patients whose prognosis for recovery is dim.
The decision-making process should generally occur in the clinical setting without resort to the courts, which are available to assist in decision making when an impasse is reached.
In making decisions for incompetent patients, surrogate decision makers should effectuate the patient's own preferences expressed before the patient lost decision-making capacity (the subjective standard); however, if these references are not known, the surrogate, based on whatever evidence is available, should approximate what the patient would have wanted (the substituted judgment standard). If there is no information about the patient's preferences, the surrogate should make a decision that is in the patient's best interests (the best interests standard).
In ascertaining an incompetent patient's preferences, the attending physician and surrogate may rely on the patient's "advance directive," which may be written or oral.
Artificial nutrition and hydration are medical treatments and may be withheld or withdrawn under the same conditions as any form of medical treatment.

Providers must offer written information and summaries of pertinent institutional policies to all adult patients regarding their rights under state laws to accept or refuse treatment and to make advance directives.
The patient's record must be documented to indicate whether the patient has an advance directive.
Institutions may not discriminate against or refuse care to a patient based upon whether the patient has executed an advance directive.
Institutions have an affirmative obligation to comply with requirements of state law regarding advance directives.
Institutions must provide (individually or with others) education to staff and community regarding issues associated with advance directives.
State Medicaid laws must be amended to require participating healthcare institutions to furnish the written information mentioned above.
With the Department of Health and Human Services' assistance, state Medicaid agencies must develop written descriptions of state laws on advance directives, and these materials are to be distributed by participating healthcare institutions

DURABLE POWER OF ATTORNEY FOR HEALTH CARE (DPAHC
The purpose of the Act is to communicate and protect patients' rights to self-determination in health care. The underlying assumptions of the PSDA are that:
- Patients who are informed of their rights are more likely to take advantage of them.
- If patients are more actively involved in decisions about their medical care, then that care will be more responsive to their needs.
- Patients may choose care that is less costly
From 1991, when the PSDA was first implemented, to today, most individuals have not completed advance directives and/or do not have them when they enter healthcare agencies that fall under the umbrella of the PSDA. What does this mean for those working in the healthcare field?
Conflict between patient autonomy and physician paternalism, poor communication, institution or physician fear of litigation, and/or family disagreement with the patient or healthcare professionals continues to be an issue.

DEFINITIONS OF ETHICAL PRINCIPLES

The major ethical principles of significance to physicians and other healthcare personnel are respect for persons, autonomy, veracity, beneficence, non-maleficence, justice, fidelity, and right-to-know [1]. These terms are used widely in bioethics and should be briefly defined:

Respect for persons requires that each individual be treated as unique and be entitled to treatment that is respectful of their human dignity.
Autonomy refers to the right of the patient to determine what will be done with his or her own person. It also involves the patient's right to have confidentiality of their own medical history and records, and for the medical personnel to safeguard that right.
Veracity involves truthfulness. Physicians are obligated to be truthful with patients and/or their families and should avoid withholding information. This allows them to make informed choices.
Beneficence refers to the ethical principle of doing or promoting good.
Non-maleficence correlates to Hippocrates' principle of doing no harm.
Justice is broadly understood as fairness; however, it pertains to what someone or a group is owed. It also relates to the distribution or allocation of a scarce resource or treatment. The principle of justice can also be applied in decisions about end-of-life care, such as the right of the patient to receive adequate palliative treatment.
Fidelity means remaining faithful to promises made.
Right-to-know is the principle of informed consent.

The process starts with the broad and general, often abstract, global ideas of how people should act properly within society. Then, the process narrows in focus to a smaller group or individual situation in which the ethical principles act as a guide for daily living.

Principles of Medical Ethics

A physician shall be dedicated to providing competent medical care, with compassion and respect for human dignity and rights.
A physician shall uphold the standards of professionalism, be honest in all professional interactions, and strive to report physicians deficient in character or competence, or engaging in fraud or deception, to appropriate entities.
A physician shall respect the law and also recognize a responsibility to seek changes in those requirements that are contrary to the best interests of the patient.
IV. A physician shall respect the rights of patients, colleagues, and other health professionals, and shall safeguard patient confidences and privacy within the constraints of the law.
A physician shall continue to study, apply, and advance scientific knowledge, maintain a commitment to medical education, make relevant information available to patients, colleagues, and the public, obtain consultation, and use the talents of other health professionals when indicated.
A physician shall, in the provision of appropriate patient care, except in emergencies, be free to choose whom to serve, with whom to associate, and the environment in which to provide medical care.
A physician shall recognize a responsibility to participate in activities contributing to the improvement of the community and the betterment of public health.
A physician shall, while caring for a patient, regard responsibility to the patient as paramount.
A physician shall support access to medical care for all people.