COMMON TERMS IN BIO-MEDICAL ETHICS
Advance Directive - Advance directives are documents which indicate your health care wishes in the event that you are not capable of making your own decisions. Advance directives are not used for decision-making if the patient is able to make the decision. Pennsylvania recognizes two types of advance directives, durable power of attorney for health care decisions and living wills. An advance directive extends the patient’s ability and right to refuse care. If a health care professional cannot abide by a patient’s advance directive, then he/she should transfer care to another professional who can abide with it (assuming that there is no question about the directive’s validity or applicability to current circumstances).
Durable power of attorney for health care decisions is a form used to indicate who you would like to make treatment decisions for you in the event that you are unable to make them yourself. This person is sometimes referred to as your surrogate, proxy, or guardian.
A living will is a document that indicates your treatment wishes in the event that you are unable to make your own decisions. These can range from general statements about what is important to you, to lists of conditions under which you would refuse various life-sustaining treatments.
Currently in PA Advance Directives only go into effect if the patient is terminally ill, permanently comatose, or in a persistent vegetative state. However, they can be used as evidence of the patient’s wishes.
Assisted Suicide - Assisted suicide involves helping a person kill him or herself. The main difference between this and euthanasia is that in assisted suicide the patient is in complete control of the process that leads to death because he/she is the person who performs the act of suicide. The other person simply helps (for example, providing the means for carrying out the action).
Autonomy - Autonomy is the right or capacity to make one's own rational decisions, using one's own value system, and act on those decisions, without undue coercion from other people or influences. Thus autonomy requires an adequate degree of freedom of thought and action.
If someone lacks the capacity to make autonomous decisions, those caring for him/her have to either restore the person's capacity for autonomy or select an autonomous person to make decisions for him/her.
If someone has the capacity for autonomy but is prevented from acting autonomously by outside influences, then his/her right to autonomy has been violated. In this case, one has to consider whether or not this violation was justified. An individual's autonomy may justifiably be violated if necessary to protect the autonomy of others or to protect other important values (for example, we limit what researchers can do to vulnerable subjects and animals.).
Some of the obstacles to autonomy are beyond our control (i.e. true accidents, natural causes, etc.).
Beneficence - One should act in such a way that it produces beneficial results. Usually in health care, beneficence is interpreted as a health care professional's duty to act in a manner that in their best judgement will benefit the patient.
Code of Ethics - This is a statement created by a professional group or institution which summarizes the basic values which should guide the actions of its members/employees. Usually these are ambiguous and noncontroversial. Also, not all members agree to all aspects of the code. Thus, while useful as a guide, it is rarely sufficient for indicating how one should act in a certain situation.
Compassion - The term compassion is used in many different ways. But, it usually encompasses two things, 1. Respect for others as beings who reason and feel emotions and 2. An attempt to put oneself in the shoes of others in order to understand where they are coming from. Compassion requires that you care for others as individuals. Compassion is a virtue. It is an ideal that individuals strive to achieve throughout their lives.
For example, a compassionate health care professional will treat the patient as a person. The patient is something more than a patient. He/she is related to others in many ways, has beliefs, fears, desires, goals, which may or may not impact on his/her health and health care decisions. The compassionate professional recognizes this and helps the patient balance the many facets of his/her life in light of the illness/injury.
Confidentiality - This is a person's right to privacy of information about him or herself. Information can harm people. Health care professionals need access to private information. Confidentiality promotes the trust thatmakes it safer for patients to reveal information to health care professionals. Patients expect that the information will not be communicated to others and will only be used for the purposes related to their health care.
Breaches of confidentiality undermine the trust necessary for a successful patient/health care professional relationship. However, they may be justified under some circumstances. Many argue about what justifies such a breach. The new HIPAA regulations provide greater legal protection for confidentiality.
Conflict of Interest - “A potential or actual conflict of interest exists when legal obligations or widely recognized professional norms are likely to be compromised by a person’s other interests.”1 An example of a potential conflict of interest would be if an ambulance company becomes affiliated with a specific hospital organization and gives bonuses to their ambulance crews who transport patients to hospitals in the organization. The patient’s right to choose their destination and the duty to transport the patient to the appropriate hospital according to protocol may be compromised. Protections need to be put in place to prevent this from occurring.
Do Not Resuscitate Order (DNR) - This is an order involves limiting or withholding measures intended to treat a cardiopulmonary arrest. A DNR order does not mean “do not treat.” Patients with intact DNR orders may still desire intensive-care-level interventions, surgery, or other care measures. The decision for a DNR order should be well-informed. A DNR order can be requested by the patient, or if incompetent, the patient’s surrogate decision-maker. Without the patient or surrogate’s consent, the physician may only write a DNR in situations of physiological futility or when DNR is consistent with the patient’s interests and the incompetent patient has no surrogate or advance directive speaking to the situation. The Ethics committee is available for consultation when necessary.
Euthanasia - Euthanasia is intentionally causing the death of a person, the motive being to benefit that person, honor his/her wishes, or protect him/her from further suffering. If the motive is other than the interests of the patient, then it does not qualify as euthanasia (i.e. cost-cutting, triage, etc.).
Euthanasia is usually divided into two categories, active and passive. These refer to the means used to cause death. People argue over the meaning of these terms. But here is a basic working definition. Active is providing or doing something that directly causes the patient’s death. (i.e. giving lethal medication, withdrawing a ventilator when the patient is still paralyzed from medication, delivering carbon monoxide, etc.). Passive is when one has a treatment with a good chance of preventing or delaying a patient’s death and does not use it (i.e. withdrawing or withholding a ventilator in a patient with an underlying condition that makes it difficult or impossible to breathe without assistance, withdrawing or withholding medication necessary to keep the patient’s blood pressure up, not treating pneumonia in a patient with PVS, etc.).
Regardless of these categories, the important aspect to remember is that the defining characteristics of euthanasia are the intention to cause death which is motivated by mercy for the patient. The U.S. Supreme Court has upheld a person’s right to refuse any treatment, including nutrition and hydration, even if it is necessary to save the person’s life. However, they have not recognized a right to receive treatment which will cause one’s death. So, they seem to be accepting a legal distinction between active and passive euthanasia.
Fidelity (loyalty and/or promise-keeping) - In some cases this term is used to describe a duty to be loyal. In other instances it is used to refer to the duty to keep one’s promises. With managed care contracts and the increase in institutional affiliations, more health care professionals are finding themselves in situations where they have to choose between honoring a contractual obligation or doing what they believe is in the patient’s best interests. They may also find that their obligations to different third parties conflict.
Futile Care - This term is ambiguous. It is used to refer to treatment that need not be provided. But the important question is what is the basis for determining this treatment to be futile.
Physiologic futility is when treatment is physiologically unable to work or “highly likely merely to preserve permanent unconsciousness or a persistent vegetative state, or to require the patient to remain permanently hospitalized.”2 Under these conditions, it is not necessary to provide or continue this treatment according to Hahnemann Hospital’s policy on Withholding or Withdrawing Life-sustaining Treatment.
Futility may also be determined based on perceived or projected poor quality of the patient’s life, degree to which this treatment does not impact on the patients overall health, degree of pain or suffering involved withlittle benefit, or in instances where the chance for success is very small. “Futility” has also been used to refer to treatment that is very expensive and provides little benefit to the patient. However, these broader definitions of “futility” are ambiguous because they involve making value judgements about the quality-of-life of individual patients. Therefore, Hahnemann’s policy is that it is not appropriate for a physician to make unilateral determinations of futility in this context. Instead, physicians and other health care professionals should work with the patient and family to determine whether or not a specific treatment should be initiated or continued.3
Informed Consent/Refusal - This is an ongoing process which helps the patient understand what he/she needs to know in order to make a treatment decision and the health care professional understand the patient's needs and concerns which might influence such a decision. Ideally, the patient makes a voluntary, informed decision regarding care.
It requires information presented at a level that the patient can understand, in an environment that supports good decision making. It also requires active support of and respect for the patient's right to make that decision.
Informed consent promotes and protects patient autonomy.
Institutional Review Board (IRB) - This is the technical term for the committee within the institution which oversees all research involving human subjects within the institution, or conducted by members of the institution. A large part of its job is protecting the well-being of human subjects and ensuring that all studies involving humans abide by the federal and institutional regulations.
Institutional Animal Care and Use Committee (IACUC) - This committee oversees the use of live animals for research, education, or any other reason throughout the institution or by individuals representing this institution. A large part of its job is promoting, to the greatest extent possible given the project, the well-being of animals used by the institution and assuring that all who use animals abide by federal, state, accreditation, and institutional guidelines.
Justice - This is a difficult term to define. But generally justice considerations deal with issues of fairness, equality, compensation, and distribution of limited resources. Justice issues are concerned with the treatment of individuals as members of a group or society. Many organizational ethics issues involve questions of justice.
Distributive justice concerns the allocation of resources and/or effort amongst individuals. Different situations may require different strategies. For example, most emergency departments change their strategies based on the ratio of care-givers to patients, and degree of patient need, using “first-come first served” will not be in the interests of a patient having a heart attack. Similarly, patients may be treated equally in terms of respect, but not in terms of time spent caring for them. In cases of extreme shortage of life-sustaining resources (i.e. transplant organs), committees or policies may be formed to handle the difficult distributive justice issues.
Nonmaleficence (Primum Non Nocere) - "Above all, do no harm."
This can be interpreted in two ways:
1. A health care professional has a duty to avoid harming his/her patient.
2. A health care professional has a duty to prevent any harm to the patient.
Organizational Ethics - This is an area of healthcare ethics that addresses ethical issues in admissions, discharge, billing, budgeting, marketing, relationships with third-party payers and managed care plans, and other institutional ethics topics, like organizational codes of ethics. JCAHO requires a process for examining these issues.
Paternalism - Acting like a parent towards another. Paternalism is where person A decides to treat Person B in accordance with what Person A believes to be in Person B’s best interests, regardless of Person B’s wishes. This is done out of beneficent motives for Person B. Person A assumes that he/she knows what is best for person B. Paternalism weighs patient well-being more highly than patient autonomy. Furthermore, it does not recognize the subjectivity of well-being and individual values. It is the old model for health care practice.
Rights - Rights are claims that you deserve something from someone or some group. Rights can be derived from law, nature, relationships, contracts/agreements, social structure, or beliefs. Rights are also categorized as positive (provision) and negative (protection from undue interference). This categorization indicates the kind of claim and obligation that the right entails.
Positive Right - If I have a positive "Right to X," then that means that society has an obligation to provide me with X.
For example, if the right to health care is a positive right of all American citizens, then American society must provide health care to all American citizens.
Negative Right - If I have a negative "Right to X," then that means that society has an obligation to prevent others from interfering with my ability to get and keep X if I choose to do so. Essentially protective measures must be provided to ensure fair access to X and to prevent X from being unfairly taken away. For example, if the right to health care is a negative right of all American citizens, then American society must prevent undue interference with citizens' access to and use of health care services.
Rights, duties, obligations, and responsibilities can also be categorized as universal or relative, and as absolute, prima facie, or conditional -
Any universal right, duty, etc. applies to all members of the specified groups, no matter the circumstances, culture, time, etc. (i.e. all living things, all rational beings, all humans, etc.). Natural rights are universal because they are thought to exist regardless of whether they are recognized by present society, because they are derived from a natural property of the individual who has the right (i.e. being human, being rational, being alive, being created by God, etc.).
A relative/conditional right, duty, etc. applies only under certain circumstances or is based on the context of the situation. For example, a patient’s contract with his/her insurance company creates a right to health care coverage for that patient in accordance with the conditions in the contract.
Any right, duty, etc. that is absolute must always be observed. There are no exceptions to absolute rules.
Any right, duty, etc. that is prima facie must be observed unless it is overridden by a more important consideration. Conditional and prima facie rules allow for exceptions.
Right to health care - This has legal and social interpretations as well as ethical. As mentioned above, some people argue that a right to health care implies a right to be provided with health care regardless of ability to pay. Other people argue that it merely implies that society should promote fair access to care, but does not have to provide free care.
Surrogate Decision-Making - When a patient lacks sufficient capacity to make a decision about his/her medical care, someone else must make that decision. This individual is designated as the patient's surrogate decision-maker, guardian, or designated proxy for health care decisions. The latter two terms are legal terms, I'll simply use the term surrogate to refer to the person who makes health care decisions for the patient.
Being a patient surrogate is a heavy responsibility. One has to make difficult decisions that will have a major impact on the patient's life. Therefore, there are standards for surrogate decision-making. These help guide the surrogate. They also provide a basis for others to evaluate the surrogate's decision in order to protect the patient from irresponsible or unethical surrogates.
There are three main standards used for surrogate decision-making:
1. Subjective Standard - This standard refers all health care decisions to explicit instructions that the patient provided prior to losing his/her decision-making capacity. Under this standard, the surrogate makes care decisions in accordance with the patient's advance directive. (See advance directives, above.)
2. Substituted Judgement - Under this standard, the surrogate refers to the patient's values, beliefs, character traits, and past decisions in order to make an educated guess with regard to what the patient would have decided in this particular instance. Essentially, you are trying to use the patient's own standards to make the decision, however, you do not have an advance directive or the advance directive does not cover the situation at hand.
3. Best Interests Standard - This standard is used when you have no indication of what the patient's values are or what he/she would have wanted. Therefore, you use your own judgement. You decide what is in the patient's best interests.
Whistleblowing - Whistleblowing involves speaking out against wrongdoing (ethical or legal). This requires a combination of courage and good judgement on the part of the whistle-blower. The whistleblower must be able to identify the situation, the potential for harm, and the means for reporting which best protects all involved from harm. Most institutions have standards for handling different types of misconduct or potentially harmful situations in ways which protect the rights of the accused as well as the whistleblower.
References:
1Association of Academic Health Centers, Conflicts of Interest in Academic Health Centers (Washington, DC: AAHC, 1990), pp. 1-16.
2,3Hahnemann University Hospital’s policy, Level of Care and Cardiopulmonary Resuscitation policy, revised 8/01.