Bioethics

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What is "medical futility"?

"Medical futility" refers to interventions that are unlikely to produce any significant benefit for the patient. Two kinds of medical futility are often distinguished: 1. Quantitative futility, where the likelihood that an intervention will benefit the patient is exceedingly poor, and 2. Qualitative futility, where the quality of benefit an intervention will produce is exceedingly poor.

Can a patient demand that I provide them with a form of treatment that I am uncomfortable providing?

- A physician is not morally obligated to provide treatment modalities that they do not believe offer a benefit to the patient or which may harm the patient. - Physicians should also not offer treatments that they do not feel competent to provide or prescribe. - However, it is important to take the patient's request seriously, consider accommodating requests that will not harm the patient or others, and attempt to formulate a plan that would be acceptable to both the physician and patient.

How is advance care planning different from advance directives?

- ACP: process to help patients with decision-making capacity guide future health care decisions in the event that they become unable to participate directly in their care - advanced directive: designed to allow competent patients the opportunity to guide future health care decisions in the event that they are unable to participate directly in medical decision making

What is my responsibility when a patient endangers her health by refusing a treatment?

- Adults have a moral and legal right to make decisions about their own health care, including the right to refuse treatments that may be life-saving. - The physician has a responsibility to make sure that the patient understands the possible and probable outcomes of refusing the proposed treatment. - The physician should attempt to understand the basis for the patient's refusal and address those concerns and any misperceptions the patient may have. - In some cases, enlisting the aid of a leader in the patient's cultural or religious community may be helpful.

Why is re-discussion of the implications of DNR order necessary during anesthesia and urgent procedures?

- Because the OR environment presents patients with a situation in which cardiopulmonary resuscitation (CPR) carries significantly different risks and benefits than on the medical ward, re-discussion of the implications of the DNR order are necessary. - Anesthesiologists and surgeons may be reluctant to accept DNR orders on patients undergoing surgery because of the scope of medical practice which constitutes "normal care" in the surgical environment. - Many surgeries require intubation and mechanical control of respiration for the duration of surgery, to protect the airway from aspiration, prevent anesthetic-induced hypoventilation, to allow the administration of paralytic agents to prevent muscle contraction during surgery, and for many other reasons. Yet intubation and ventilatory assistance are mainstays of CPR. - It is inaccurate to call anesthesia "ongoing resuscitation," yet the administration of anesthetic agents frequently causes initial changes in the autonomic nervous system, such that hypotension, tachycardia, bradycardia, and temporary cardiac dysrhythmias can result. It is not rare to administer vasopressive medications and antiarrhythmic agents during the course of "normal" anesthetic management. Such medications are often also considered a vital part of effective administration of CPR. - both invasive and noninvasive technology in the OR permits easy application of therapeutic measures which might seem extreme on the medical ward, such as external or transvenous pacing and defibrillation. Under most other circumstances, such measures would fall almost exclusively within the realm of CPR.

What are some examples of a decision that places a child a significant risk of serious harm?

- Childhood vaccination provides an example of the kinds of factors that must be weighed in making this determination. - While most physicians believe it is in a child's best interest to receive the routine childhood vaccinations and therefore recommend them to parents, they do not generally legally challenge parents who choose not to vaccinate their children. - This is because in a well-vaccinated community the risk of contracting the vaccine-preventable illness and suffering harmful consequences from the infection are quite small. However, this calculation might shift if a clinician is faced with an unvaccinated child who has suffered a puncture would from a dirty nail. - In the latter case, the risk of tetanus (a serious and almost always fatal disease if not prevented) has become significant, and the provider would be justified in seeking the power of the State (through a court order or involvement of child protective services) to assure that the child receives the vaccination and treatment necessary to prevent tetanus in a high risk situation.

Should children be involved in medical decisions even though their parents have final authority to make those decisions?

- Children with the developmental ability to understand what is happening to them should be allowed to participate in discussions about their care. - As children develop the capacity to make decisions for themselves, they should be given a voice in medical decisions. - Most children and adolescents lack full capacity to make complex medical decisions, however, and final authority to make medical decisions will usually remain with their parents.

What is the role of confidentiality in physician-patient relationship?

- Confidentiality provides the foundation for the physician-patient relationship. In order to make accurate diagnoses and provide optimal treatment recommendations, the physician must have relevant information about the patient's illness or injury. - This may require the discussion of sensitive information, which would be embarrassing or harmful if it were known to other persons. - The promise of confidentiality permits the patient to trust that information revealed to the physician will not be further disseminated. The expectation of confidentiality derives from the public oath which the physician has taken, and from the accepted code of professional ethics. The physician's duty to maintain confidentiality extends from respect for the patient's autonomy.

What goals should I have in mind when working towards a decent death for my patient?

- Control of pain and other physical symptoms. The physical aspects of care are a prerequisite for everything that follows. - Involvement of people important to the patient. Death is not usually an individual experience; it occurs within a social context of family, significant others, friends, and caregivers. - A degree of acceptance by the patient. Acceptance doesn't mean that the patient likes what is going on, and it doesn't mean that a patient has no hopes--it just means that he can be realistic about the situation. - A medical understanding of the patient's disease. Most patients, families, and caregivers come to physicians in order to learn something about what is happening medically, and it is important to recognize their need for information. - A process of care that guides patient understanding and decision making. One great physician does not equal great care--it takes a coordinated system of providers.

Is physician aid-in-dying (PAD) ethically permissible?

- Debated! - Some argue that PAD is ethically permissible (see arguments in favor). Often this position is argued on the grounds that PAD may be a rational choice for a dying person who is choosing to escape unbearable suffering at the end of life. Furthermore, the physician's duty to alleviate suffering may, at times, justify providing aid-in-dying. These arguments rely on respect for individual autonomy, recognizing the right of competent people to choose the timing and manner of death in the face of a terminal illness. - Others have argued that PAD is not ethically permissible because PAD runs directly counter to the traditional duty of the physician to preserve life and to do no harm (see arguments against). Furthermore, many argue if PAD were legal, abuses would take place, as the social forces that condone the practice are a slippery slope that could lead to euthanasia. For instance, the disabled, poor or elderly might be covertly pressured to choose PAD over more complex and expensive palliative care options.

What if the family disagrees with the DNAR order?

- Ethicists and physicians are divided over how to proceed if the family disagrees with the recommendation to forgo attempting CPR. - If there is disagreement, every reasonable effort should be made to clarify questions and communicate the risks and potential benefits of CPR with the patient or family. - In many cases, this conversation will lead to resolution of the conflict. However, in difficult cases, an ethics consultation can prove helpful.

What about emergencies when considering DNR in the OR?

- Even in emergencies, physicians have an ethical obligation to recognize and respect patient autonomy. - Whenever possible, physicians should obtain input from the patient, or when the patient is incapacitated, from appropriate surrogates, regarding the status of the patient's DNR orders in the OR. - In the absence of such input, consensus should be reached among the caregivers about the medical benefits or futility of CPR. In any case, medical care of the patient in the absence of patient input should be directed toward realizing, to the best of the physician's ability and knowledge, the patient's goals.

Is CPR always beneficial?

- Even though including patients and families in decisions regarding resuscitation respects patient autonomy, providing patients and families with accurate information regarding the risks and potential medical benefit of cardiopulmonary resuscitation is also critical. - Under certain circumstances, CPR may not offer the patient direct clinical benefit, either because the resuscitation will not be successful or because surviving the resuscitation will lead to co-morbidities that will merely prolong suffering without reversing the underlying disease. - When CPR does not have the potential to provide direct medical benefit, physicians may be ethically justified in writing a DNAR order and forgoing resuscitation.

What is a fiduciary relationship?

- Fiduciary derives from the Latin word for "confidence" or "trust". The bond of trust between the patient and the physician is vital to the diagnostic and therapeutic process. - In order for the physician to make accurate diagnoses and provide optimal treatment recommendations, the patient must be able to communicate all relevant information about an illness or injury. - Physicians are obliged to refrain from divulging confidential information.

Under what circumstances can minors make medical decisions for themselves?

- First, every state has emancipated minor laws which designate minors who meet certain criteria as having the authority to make decisions (including medical decisions) for themselves. (most states recognize an emancipated minor as a person who meets one of the following criteria: economically self-supporting and not living at home, married, a parent, on active duty in the armed services) - Second, most states recognize some minors as sufficiently mature to make medical decisions on their own behalf. A determination that a minor is mature usually requires that the minor be older than 14 years of age and have demonstrated a level of understanding and decision-making ability that approximates that of an adult. While some states allow physicians to make this determination, most require a judicial determination of mature minor status. - Third, all states make condition-specific exceptions to the requirement of parental consent. These laws may allow an adolescent to seek treatment without parental consent for sexually transmitted diseases, pregnancy, contraception, psychiatric disorders, and drug or alcohol abuse.

Who decides when a particular treatment is futile?

- Generally the term medical futility applies when, based on medical data and professional experience, a treating health care provider determines that an intervention is no longer beneficial. - Because health professionals may reasonably disagree about when an intervention is futile, all members of the health care team would ideally reach consensus. - While physicians have the ethical authority to withhold or withdraw medically futile interventions, communicating with professional colleagues involved in a patient's care, and with patients and family, greatly improves the experience and outcome for all.

What are the physician's professional obligations with respect to CAM?

- Given the number of Americans who use CAM in combination with allopathic medicine, the issue of interactions between therapies is a pressing one, particularly in the case of botanical compounds. - For the allopathic clinician, it is especially important to track the patient's use of all CAM therapies. Offhand dismissal or ridicule of CAM will impair communication and the therapeutic relationship with the patient; harmful herb-drug interactions could be missed or the patient may break entirely with the allopathic system. - The CAM physician has obligations to adhere to the best practices of EBM, understanding that research in CAM lags practice. There is a danger for clinicians as well as for patients to believe the "if natural, then safe" fallacy, and there is danger in the tendency, however innocently formed, to use natural products as pharmaceuticals. - CAM therapies provide useful tools to improve human health. As CAM research proceeds, the effectiveness or ineffectiveness of individual therapies will be established, and the effective CAM therapies will add significantly to the armamentarium of modern medicine. As concerns about the costs of health care grow, it will be particularly important to perform cost-benefit analyses on CAM therapies and determine whether they, used in informed combination with conventional care, might serve to reduce the economic burden of our national health care.

What obligations do clinicians have in these relationships?

- Health care providers have professional and ethical obligations to care for these patients because of the fiduciary nature of the clinician-patient relationship. - The provider has knowledge, influence, and power in the relationship, which entail special responsibilities. - It may be difficult to see some of these patients as vulnerable, but without a clinician's help their vulnerability would only be compounded. While their medical, social, and psychiatric conditions may be complex, patients benefit both from a therapeutic relationship and from medical treatments and advice. - Because clinicians often find these relationships exhausting and frustrating, they should identify trusted colleagues with whom they can share their frustrations, employ strategies that allow the best in the relationship to prevail, and use a team approach. - Clinicians should also try to address or manage their own attitudes and behaviors that contribute to the problem, recognizing that the patient's behaviors and attitudes may not change. The clinicians should do everything they can to maintain a therapeutic relationship (even one that is not ideal), however in some circumstances they may need to transfer care to another provider - This transfer can be done without threatening the patient. The treating provider can help to maintain the patient's trust in the health system, while also setting clear boundaries.

What if the request for physician aid-in-dying persists?

- If a patient's request for aid-in-dying persists, each individual clinician must decide his or her own position and choose a course of action that is ethically justifiable and legally permissible - It is useful to carefully reflect on and think through where you stand on the issue and be prepared to openly discuss your position with the patient, acknowledging and respecting difference of opinion when it occurs. - The most important thing is to be clear and transparent about your position. Even in states where it is illegal, some physicians will decide to help their patients, particularly when patients are enduring unbearable suffering.

If CPR is deemed "futile," should a DNAR order be written?

- If health care providers unanimously agree that CPR would be medically futile, clinicians are not obligated to perform it. - Nevertheless, the patient and/or their family still have a role in the decision about a Do Not Attempt Resuscitation (DNAR) order. - As described earlier, involving the patient or surrogate decision maker is essential to demonstrate respect for all people to take part in important life decisions.

Why is confidentiality important?

- If the confidentiality of this information were not protected, trust in the physician-patient relationship would be diminished. - Creating a trusting environment by respecting patient privacy encourages the patient to seek care and to be as honest as possible during the course of a health care visit. - It may also increase the patient's willingness to seek care. For conditions that might be stigmatizing, such as reproductive, sexual, public health, and psychiatric health concerns, confidentiality assures that private information will not be disclosed to family or employers without their consent.

Are advance directives legally binding?

- If the directive is constructed according to the outlines provided by pertinent state legislation, they can be considered legally binding.

Is it ever acceptable to not have a full informed consent?

- If the patient does not have decision-making capacity, such as a person with dementia, in which case a proxy, or surrogate decision-maker, must be found. (See Surrogate Decision-Making/No Legal Next of Kin.) - A lack of decision-making capacity with inadequate time to find an appropriate proxy without harming the patient, such as a life-threatening emergency where the patient is not conscious - When the patient has waived consent. - When a competent patient designates a trusted loved-one to make treatment decisions for him or her. In some cultures, family members make treatment decisions on behalf of their loved-ones. Provided the patient consents to this arrangement and is assured that any questions about his/her medical care will be answered, the physician may seek consent from a family member in lieu of the patient.

What if the family disagrees with a patient's living will?

- If there is a disagreement about either the interpretation or the authority of a patient's living will, the medical team should meet with the family and clarify what is at issue. The team should explore the family's rationale for disagreeing with the living will. - if the family merely does not like what the patient has requested, they do not have much ethical authority to sway the team. - If the disagreement is based on new knowledge, substituted judgment, or recognition that the medical team has misinterpreted the living will, the family has much more say in the situation and most hospitals would defer to the family in these situations. - If no agreement is reached, the hospital's Ethics Committee or Ethics Consultation Service should be consulted.

Would a physician ever be justified in breaking a law requiring mandatory reporting?

- In general, mandatory reporting requirements supersede the obligation to protect confidentiality. - While the physician has a moral obligation to obey the law, she must balance this against her responsibility to the patient. - Reporting should be done in a manner that minimizes invasion of privacy, and with notification to the patient. If these conditions cannot be met, or present an intolerable burden to the patient, the physician may benefit from the counsel of peers or legal advisors in determining how best to proceed.

What is the basis for granting medical decision-making authority to parents?

- In most cases, a child's parents are the persons who care the most about their child and know the most about him or her. - As a result, parents are better situated than most others to understand the unique needs of their child and to make decisions that are in the child's interests. - Furthermore, since many medical decisions will also affect the child's family, parents can factor family issues and values into medical decisions about their children.

What should I know about the hospice approach?

- In order to help someone towards a decent, or even good, death, the hospice framework is very helpful. - Hospice started as a grassroots effort, as a view of dying that lets go of the possibility of cure. - Instead, hospices emphasize symptom control and attention to psychological and spiritual issues. Pathophysiology becomes less important and personal meaning becomes more important. - Pain - Symptom control - Psychological issues - Spiritual or existential issues

What if CPR is not futile, but the patient wants a DNAR order?

- In some cases, patients may request their desire to forgo attempting CPR at the time of admission. - Some of these patients may have an advanced care directive that indicates their preferences to forgo attempting CPR. - In other cases, a patient may explicitly request CPR not to be performed. - If the patient understands her condition and possesses intact decision making capacity, her request should be honored. - This position stems from respect for autonomy, and is supported by law in many states that recognize a competent patient's right to refuse treatment.

What ethical issues are associated with complementary and alternative medicine (CAM) in clinical practice?

- In the context of clinical practice, the ethical issues pertain to providing optimal medical care to an individual. - Any physician, allopathic or otherwise, is bound by oath to do no harm and to provide the most efficacious therapies to their patient. - In evaluating the risk of harm and the potential benefits of any therapy, weight must be given to the amount and quality of research that has been done on the intervention, known risks and side effects of the therapy, the credential and competence of the practitioner, the seriousness of the condition being treated, and the belief system and wishes of the patient. - Given the relative dearth of research literature on many CAM therapies, the clinician must use best judgment to decide which therapies are unlikely to do harm, either directly or by reducing the effectiveness of other therapies, and which may offer some, if not great, benefit. - A CAM therapy that is neither harmful nor effective can become damaging if it precludes the patient obtaining effective treatment.

What is informed consent?

- Informed consent is the process by which the treating health care provider discloses appropriate information to a competent patient so that the patient may make a voluntary choice to accept or refuse treatment. - It originates from the legal and ethical right the patient has to direct what happens to her body and from the ethical duty of the physician to involve the patient in her health care.

What ethical issues are associated with research in CAM?

- Informed consent: The regulations stipulate that the informed consent document and process must accurately describe reasonably anticipated risks and potential benefits. Yet in many instances CAM therapies have not had systematic safety or efficacy data collected, and are ratified by historical anecdotal evidence. The informed consent document should state that although a therapy might have been in widespread use, rigorous safety data may not be available. - Misconceptions: A prospective research subject must weigh for themselves the balance of risks and benefits that will accrue from their participation. The therapeutic misconception is the (documented) belief held by many research subjects that they will benefit from participating in a research study (allopathic or CAM), irrespective of disclaiming language in the informed consent form. This misconception weighs in favor of participation. Additionally, there is a widely held notion that if something is "natural" it must be safe, or beneficial. This misconception also weighs in favor of participation by reducing the perceived risks associated with the study. In CAM research it is imperative to impress upon potential subjects that the risks and benefits of participation are more difficult to anticipate than they are for better-studied interventions. - Study design: The Belmont principle of beneficence dictates that there be a reasonable likelihood of obtaining useful data from a study. As discussed above, the difficulties inherent in generating sound designs in CAM research challenge adherence to this principle. Research study designs must undergo rigorous review by scientists and clinicians well versed in the CAM modality being tested.

Why do we agree to do surgery on patients with DNR orders?

- Many types of surgery provide palliative benefits to patients who either will not survive long-term, or who do not wish resuscitation in the OR. - Requiring such a patient to suspend their DNR orders to be a candidate for surgery uses their discomfort, pain, and desire to benefit from surgery to coerce them into accepting medical care (CPR) they do not want. - Patient refusal of some medical therapy, such as CPR, does not ethically justify physicians denying them other medical therapy, such as surgery, that might benefit them

When can parental authority to make medical decisions for their children be challenged?

- Medical caretakers have an ethical and legal duty to advocate for the best interests of the child when parental decisions are potentially dangerous to the child's health, imprudent, neglectful, or abusive. - As a general rule, medical caretakers and others should challenge parental decisions when those decisions place the child at significant risk of serious harm. - When satisfactory resolution cannot be attained through respectful discussion and ethics consultation, seeking involvement of a State child protection agency or a court order might be necessary.

What are the goals and expected outcomes of advance care planning?

- Minimize the burden of decision making on the spokesperson and/or family members. - Reduce the likelihood of conflicts between a patient's spokesperson, family members and health care providers, and - Minimize the likelihood of over- or under-treatment, - Maximize the likelihood that medical care serves the patient's goals,

Is physician aid-in-dying (PAD) the same as euthanasia?

- No. While both physician aid-in-dying and euthanasia involve the use of lethal medications to deliberately end a patient's life, the key difference is in who acts to administer the medications that will end the patient's life. - In physician aid-in-dying, the patient must self-administer the medications; the "aid-in-dying" refers to a physician providing the medications, but the patient decides whether and when to ingest the lethal medication. - Euthanasia occurs when a third party administers medication or acts directly to end the patient's life. Euthanasia is illegal in every state, including Washington.

What role should the physician's personal feelings and beliefs play in the physician-patient relationship?

- Occasionally, a physician may face requests for services, such as contraception or abortion, which raise a conflict for the physician. Physicians do not have to provide medical services in opposition to their personal beliefs - In addition, a nonjudgmental discussion with a patient regarding her need for the service and alternative forms of therapy is acceptable. However, it is never appropriate to proselytize. - While the physician may decline to provide the requested service, the patient must be treated as a respected, autonomous individual. Where appropriate, the patient should be provided with information about how to obtain the desired service.

What should I do if a patient asks me for physician aid-in-dying (PAD)?

- One of the most important aspects of responding to a request for PAD is to be respectful and caring. - The patient's request should be explored, to better understand its origin and to determine if there are other interventions that may help ameliorate the concerns that motivated the request. - In most cases, there are alternatives in palliative and hospice care that likely will address most of the patient's concerns

Can parents refuse to provide their children with necessary medical treatment on the basis of their beliefs?

- Parents have legal and moral authority to make health care decisions for their children, as long as those decisions do not pose a significant risk of serious harm to the child's health. - Parents should not be permitted to deny their children medical care when that medical care is likely to prevent substantial harm or suffering. - If necessary, the physician may need to pursue a court order or seek the involvement of child protective services in order to provide treatment against the wishes of the parents. - Nevertheless, the physician must always take care to show respect for the family's beliefs and a willingness to discuss reasonable alternatives with the family.

Who has the authority to make decisions for children?

- Parents have the responsibility and authority to make medical decisions on behalf of their children. - This includes the right to refuse or discontinue treatments, even those that may be life-sustaining. - However, parental decision-making should be guided by the best interests of the child. - Decisions that are clearly not in a child's best interest can and should be challenged.

What are the ethical obligations of physicians when a health care provider judges an intervention is futile?

- Physicians have no obligation to offer treatments that do not benefit patients. - Futile interventions may increase a patient's pain and discomfort in the final days and weeks of life; give patients and family false hope; delay palliative and comfort care; and expend finite medical resources. - However, determining which interventions are beneficial to a patient can be difficult, since the patient or surrogate might see an intervention as beneficial while the physician does not. - Physicians should follow professional standards, and should consider empirical studies and their own clinical experience when making futility judgments. They should also show sensitivity to patients and families in carrying out decisions to withhold or withdraw futile interventions. - Although the ethical requirement to respect patient autonomy entitles a patient to choose from among medically acceptable treatment options (or to reject all options), it does not entitle patients to receive whatever treatments they ask for. Instead, the obligations of physicians are limited to offering treatments that are consistent with professional standards of care and that confer benefit to the patient.

What happens when the physician has a relationship with multiple members of a family?

- Physicians with relationships with multiple family members must honor each individual's confidentiality. - Difficult issues, such as domestic violence, sometimes challenge physicians to maintain impartiality. - In many instances, physicians can help conflicted families towards healing. At times, physicians work with individual family members; other times, they may serve as a facilitator for a larger group. - As always, when a risk for imminent harm is identified, the physician must break confidentiality. - Physicians can be proactive about addressing the needs of changing family relationships. EX: physician might tell preteen "Soon you'll be a teenager. Sometimes teens have questions they would like to discuss with me. If that happens to you, it's okay to tell your parents that you'd like an appointment. You and I won't have to tell your parents what we talk about if you don't want to, but sometimes I might encourage you to talk things over with them." -

Why is it important to respect what appear to me to be idiosyncratic beliefs?

- Respecting the beliefs and values of your patient is an important part of establishing an effective therapeutic relationship. - Failure to take those beliefs seriously can undermine the patient's ability to trust you as her physician. - It may also encourage persons with non-mainstream cultural or religious beliefs to avoid seeking medical care when they need it.

What should be included in a discussion of DNR orders in the OR with the patient or patient's surrogates?

- Since the goal of medical therapy is to provide meaningful benefits to the patient, discussion of DNR orders in the OR should center around the patient's goals for surgical therapy. - Patients may have fears of "ending up a vegetable" on a ventilator after surgery, for example. In those cases, discussion should center around the positive prognosis for patients who have CPR in the OR, together with reassurance that the patient's stated wishes in their advanced directive regarding ventilatory support would be followed postoperatively after anesthetic effects are ruled out as a cause of ventilatory depression. - Anesthesiologists in particular need to be aware that studies indicate that many patients with DNR orders in their charts (up to 46%) may be unaware that the order exists, even when they are competent. If this proves to be the case, a full discussion of the DNR order should be undertaken prior to proceeding.

What is the role of patient autonomy in DNAR orders?

- Since the original inception of DNAR orders, respecting the rights of adult patients and their surrogates to make medical decisions, otherwise known as respect for autonomy or respect for persons, has been emphasized.

What about "slow codes" or "show codes"?

- Slow codes and show codes are forms of "symbolic resuscitation." A "slow code" is an act performed by the health care providers that resembles CPR yet is not the full effort of resuscitation while a "show code" is a short and vigorous resuscitation performed to benefit the family while minimizing harm to the patient - In general, performing slow and show codes undermines the rights of patients to be involved in clinical decisions, is deceptive, and violates the trust that patients have in health care providers.

Who is the decision-maker regarding the nature of medical care administered to a newborn infant?

- The biological parents (or parent) have authority regarding the decisions for their child (known as parental authority). - This is a universally granted right regardless of the parents' age or other contextual features, unless the parents are declared not competent or otherwise unfit to serve as the child's proxy. - There are some limits to such authority - For example, when the discussion occurs in the context of delivery room management of extreme prematurity, usually parents wishes (whatever they may be) are followed at 23 and for the most part 24 weeks gestation. Whereas at 22 weeks most neonatologists are reluctant to aggressively resuscitate and at 25 weeks reluctant to withhold such care.

What is the accepted legal and ethical basis for decision-making regarding the nature of medical care in the newborn infant?

- The child's best interest is legally and ethically primary and should be weighed over the family's well-being or societal concerns (using the Best Interest Standard). - much discussion is placed on the need to include the family's interests when making life and death decisions regarding severely compromised infants - In the interest of justice, societal concerns about excessive cost for aggressive care should be addressed at the policy level, rather than on an individual or case-by-case basis.

What does the duty of confidentiality require?

- The obligation of confidentiality prohibits the health care provider from disclosing information about the patient's case to others without permission and encourages the providers and health care systems to take precautions to ensure that only authorized access occurs. - Appropriate care often requires that information about patients be discussed among members of a health care team; all team members have authorized access to confidential information about the patients they care for and assume the duty of protecting that information from others who do not have access. - Electronic medical records can pose challenges to confidentiality.

What about obtaining court orders to force pregnant women to comply?

- The use of court orders to force treatment on pregnant women raises many ethical concerns. Court orders force pregnant women to forfeit their autonomy in ways not required of competent men or nonpregnant women. There is an inconsistency in allowing competent adults to refuse therapy in all cases but pregnancy. - Hospital administrators, lawyers and judges have little warning of impending conflicts and little time for deliberation; this time pressure makes it unlikely that pregnant women will have adequate legal representation. - Furthermore, forced obstetrical interventions have the potential to adversely affect the physician-patient relationship.

What are some ways to discover well known sets of beliefs?

- There are many groups that share common sets of beliefs. These belief systems may be based on shared religion, ethnicity, or ideology. - Knowledge of these beliefs and the reasonable range of interpretation of doctrine can be very helpful in deciding if unusual beliefs should be respected. - Good resources for guidance in this area include patients and family members themselves, staff members with personal knowledge or experience, hospital chaplains, social workers, and interpreters. Unusual beliefs that fall outside known belief systems should prompt more in-depth discussions to insure they are reasonable. - It is important to explore each individual's beliefs, as shared membership in a particular religious or cultural group does not necessarily entail identical belief systems.

When is it appropriate for a physician to recommend a specific course of action or override patient preferences?

- Under certain conditions, a physician should strongly encourage specific actions. When there is a high likelihood of harm without therapy, and treatment carries little risk, the physician should attempt, without coercion or manipulation, to persuade the patient of the harmful nature of choosing to avoid treatment. - Court orders may be invoked to override a patient's preferences. However, such disregard for the patient's right to noninterference is rarely indicated. Court orders may have a role in the case of a minor; during pregnancy; if harm is threatened towards oneself or others; in the context of cognitive or psychological impairment; or when the patient is a sole surviving parent of dependent children. - However, the use of such compulsory powers is inherently time-limited, and often alienates the patient, making him less likely to comply once he is no longer subject to the sanctions.

What if patients are unable to express what their wishes are regarding DNAR orders?

- Under these circumstances, two approaches are used to ensure that the best attempt is made to provide the patient with the medical care they would desire if they were able to express their voice. These approaches include Advance Care Planning and the use of surrogate decision makers. - Not all patients have Advance Care Plans. Under these circumstances, a surrogate decision maker who is close to the patient and familiar with the patient's wishes may be identified. - The surrogate decision maker is expected to make decisions using a substituted judgment standard, which is based on what the patient would want if she could express her wishes.

What if parents are unavailable and a child needs medical treatment?

- When parents are not available to make decisions about a child's treatment, medical caretakers may provide treatment necessary to prevent harm to the child's health. - In general, a child can be treated or transported without parental permission if the child has an emergency condition that places his or her life or health in danger, the legal guardian is unavailable or unable to provide permission for treatment or transport, and treatment or transport cannot be delayed without further endangering the child. - Providers should administer only those treatments necessary to prevent harm to the child until parental permission can be obtained. - Examining a child who presents to medical attention is always appropriate in order to establish whether a threat of life or health exists.

What if a family member asks how the patient is doing? (confidentiality)

- While there may be cases where the physician feels naturally inclined to share information, such as responding to an inquiring spouse, the requirements for making an exception to confidentiality may not be met. - If there is not explicit permission from the patient to share information with family member, it is generally not ethically justifiable to do so. Except in cases where the spouse is at specific risk of harm directly related to the diagnosis, it remains the patient's (and sometimes local public health officers'), rather than the physician's, obligation to inform the spouse.

What if the patient or family requests an intervention that the health care team considers futile?

- You have a duty as a physician to communicate openly with the patient or family members about interventions that are being withheld or withdrawn and to explain the rationale for such decisions. - The aim of respectful communication should be to elicit the patient's goals, explain the goals of treatment, and help patients and families understand how particular medical interventions would help or hinder their goals and the goals of treatment. - In some instances, it may be appropriate to continue temporarily to make a futile intervention available in order to assist the patient or family in coming to terms with the gravity of their situation and reaching closure. - However, futile interventions should not be used for the benefit of family members if this is likely to cause the patient substantial suffering, or if the family's interests are clearly at odds with those of the patient.

When should I refer to a patient's advance directive?

- best to ask a patient early in his care if he has a living will or other form of advance directive - However, advance directives take effect only in situations where a patient is unable to participate directly in medical decision making.

Why are advance directives important to medical care?

- instructive directives appeals to the ethical principle of autonomy - even after a patient loses the capacity to be autonomous, we can continue to respect autonomy by abiding by the patient's prior expressed wishes - help prevent unwanted invasive medical care at end of life, ensure the patients receive the treatment they want

Is physician aid-in-dying (PAD) illegal?

- legal in Oregon, Washington, Vermont and Montana (mostly) - in other states, without specific legislative authority or a court decision, physician aid-in-dying would most likely be considered illegal, and in many states is explicitly illegal.

What are the goals of traditional ethics committees?

- to promote the rights of patients; - to promote shared decision making between patients (or their surrogates if decisionally incapacitated) and their clinicians; - to promote fair policies and procedures that maximize the likelihood of achieving good, patient-centered outcomes; and - to enhance the ethical environment for health care professionals in health care institutions.

What other kinds of disclosures are inappropriate? (confidentiality)

- when pressed for time, providers may be tempted to discuss a patient in the elevator or other public place, but maintaining privacy may not be possible in these circumstances. - Similarly, extra copies of handouts from teaching conferences that contain identifiable patient information should be removed at the conclusion of the session in order to protect patient privacy. - And identifiable patient information should either be encrypted or should not be removed from the security of the health care institution. The patient's right to privacy is violated when lapses of this kind occur.

How should I advise a patient if she doesn't have anyone to name as a proxy?

- write down her wishes and give a copy to her health care providers - legal form, such as living will, with as much detail as possible

Strategies for maintaining a therapeutic relationship

1. Be compassionate and empathic. Keep in mind that most patients whom you find frustrating to deal with have experienced significant adversity in their lives. 2. Acknowledge and address underlying mental health issues early in the relationship. 3. Prioritize the patient's immediate concerns and elicit the patient's expectations of the visit and their relationship with you. 4. Set clear expectations, ground rules, and boundaries and stick to them. Have regular visits, which helps convey confidence that the patient can deal with transient flare-ups without an emergency visit. 5. Be aware that strong negative emotions directed at you are often misplaced. 6. Be aware of your own emotional reactions and attempt to remove yourself so you can objectively reflect on the situation. Involve colleagues. Vent your feelings or debrief confidentially with a trusted colleague so that your negative emotions are kept at bay during patient encounters. 7. Recognize your own biases. 8. Avoid being very directive with these patients. A tentative style tends to work better. Remember that you provide something many of these patients do not have-a steady relationship with someone who genuinely wants to help them. This in itself can improve the patient's health, even in the absence of medical treatment. 9. Prepare for these visits. Keep in mind your goals of care and make a strategy for the encounter before it occurs.

When can confidentiality be breached?

1. Concern for the safety of other specific persons 2. Legal requirements to report certain conditions or circumstances

Why is medical futility controversial?

1. One source of controversy centers on the exact definition of medical futility, which continues to be debated in the scholarly literature. 2. Second, an appeal to medical futility is sometimes understood as giving unilateral decision-making authority to physicians at the bedside. 3. Third, in the clinical setting, an appeal to "futility" can sometimes function as a conversation stopper. Thus, some clinicians find that even when the concept applies, the language of "futility" is best avoided in discussions with patients and families 4. an appeal to medical futility can create the false impression that medical decisions are value-neutral and based solely on the physician's scientific expertise. Yet clearly this is not the case. The physician's goal of helping the sick is itself a value stance, and all medical decision making incorporates values.

What are the arguments in favor of physician aid-in-dying (PAD)?

1. Respect for autonomy 2. Justice 3. Compassion 4. Individual liberty vs. state interest 5. Honesty and transparency

What are the arguments against physician aid-in-dying (PAD)?

1. Sanctity of life 2. Passive vs. active distinction 3. Potential for abuse 4. Professional integrity 5. Fallibility of the profession

Breaking bad news: SPIKES

1. Setting: private, comfortable, non-threatening setting 2. Perception: what does the patent know and understand so far? 3. Invitation: ask patients what level of detail you should cover 4. Knowledge: give info in small chunks, pauses to ask if patient understands, use plain language 5. Emotions: recognize and empathize with patient's feelings 6. Strategy and summary: summarize main points of consultation and set medical plan

What you need to understand to care for the dying

1. The patient's story - including how that person has viewed her life, the other persons important to her, and how she could bring her life to a close in a way that would be true to herself. 2. The body - which covers the biomedical understanding of disease, and what limits and possibilities exist for that person. 3. The medical care system available for this particular patient - knowing how you can make the system work for the patient, as well as the relevant law and ethics. 4. Finally, you must understand yourself - because you, as a physician, can be an instrument of healing, or an instrument that does damage.

Some other practices that should be distinguished from physician aid-in-dying include

1. Withholding/withdrawing life-sustaining treatments 2. Pain medication that may hasten death 3. Palliative sedation

What if I see someone else make a mistake?

A physician may witness another health care provider making a major error. This places the physician in an awkward and difficult position. Nonetheless, the observing physician has some obligation to see that the truth is revealed to the patient. This should be done in the least intrusive way. If the other health care provider does not reveal the error to the patient, the physician should encourage her to disclose her mistake to the patient. Should the health care provider refuse to disclose the error to the patient, the physician will need to decide whether the error was serious enough to justify taking the case to a supervisor or the medical staff office, or directly telling the patient. The observing physician also has an obligation to clarify the facts of the case and be absolutely certain that a serious mistake has been made before taking the case beyond the health care worker involved.

What sorts of interventions require informed consent?

All health care interventions require some kind of consent by the patient, following a discussion of the procedure with a health care provider. Patients fill out a general consent form when they are admitted or receive treatment from a health care institution

What if a patient changes her mind about advanced directive?

As long as a patient remains able to participate in medical decisions, both documents are revocable. Informed decisions by patients with decision-making capacity always supersede a written directive.

Is the outcome from CPR different in the OR than on the medical ward?

CPR in the OR carries a very different medical prognosis than CPR administered in other hospital areas. While only 4 to 14% of all patients resuscitated in the hospital survive to discharge, 50 to 80% of patients resuscitated in the OR return to their former level of functioning.

What happens when medical therapy is indicated for one patient, yet contraindicated for the other?

Fetal care becomes problematic when what is required to benefit one member of the dyad will cause an unacceptable harm to the other. When a fetal condition poses no health threat to the mother, caring for the fetal patient will always carry some degree of risk to the mother, without direct therapeutic benefit for her. The ethical principles of beneficence ("be of benefit") and nonmaleficence ("do no harm") can come into conflict. Because the patients are biologically linked, both, or neither, must be treated alike. It would be unethical to recommend fetal therapy as if it were medically indicated for both patients. Still, given a recommendation for fetal therapy, pregnant women, in most cases, will consent to treatment which promotes fetal health. When pregnant women refuse therapy, physicians must remember that the ethical injunction against harming one patient in order to benefit another is virtually absolute.

How do I decide whether to tell a patient about an error?

In general, even trivial medical errors should be disclosed to patients. Any decision to withhold information about mistakes requires ethical justification. If a physician believes there is justification for withholding information about medical error from a patient, his judgment should be reviewed by another physician and possibly by an institutional ethics committee. The physician should be prepared to publicly defend a decision to withhold information about a mistake from the patient.

What are the confidentiality standards regarding adolescents?

In many states adolescents may seek treatment without the permission of their parents for certain conditions, such as treatment for pregnancy, sexually transmitted infections, mental health concerns, and substance abuse. Familiarize yourself with state and local laws, as well as institutional policies, regarding adolescents and healthcare.

How do you test for breach of confidentiality?

In situations where you believe an ethical or legal exception to confidentiality exists, ask yourself the following question: will lack of this specific patient information put another person or group you can identify at high risk of serious harm? If the answer to this question is no, it is unlikely that an exception to confidentiality is ethically (or legally) warranted. The permissibility of breaching confidentiality depends on the details of each case. If a breach is being contemplated, it is advisable to seek legal advice before disclosure.

By disclosing a mistake to my patient, do I risk having a malpractice suit filed against me?

It has been shown that patients are less likely to consider litigation when a physician has been honest with them about mistakes. Many lawsuits are initiated because a patient does not feel they have been told the truth. Litigation is often used as a means of forcing an open and honest discussion that the patient feels they have not been granted. Furthermore, juries look more favorably on physicians who have been honest from the beginning than those who give the appearance of having been dishonest.

When can CPR be withheld in the context of DNAR orders?

Many hospitals have policies that describe circumstances under which CPR can be withheld based on the practical reality that CPR does not always provide direct medical benefit. Two general situations justify withholding CPR: 1. When CPR will likely be ineffective and has minimal potential to provide direct medical benefit to the patient. 2. When the patient with intact decision making capacity or a surrogate decision maker explicitly requests to forgo CPR.

What should we do with DNR orders in the OR?

Out of respect for patient autonomy, or the right of competent, adult patients, to determine their own medical care, no specific definition of CPR was provided in the document. Instead, it requires a discussion with the patient to define medical procedures under anesthesia to which the patient would consent

What accounts for the rising awareness of maternal-fetal conflict?

Over time, the medical model for the maternal-fetal relationship has shifted from unity to duality. When there are two individual patients, the physician must decide what is medically best for each patient separately.

What if maternal decisions seem to be based on unusual beliefs?

Parents are granted wide discretion in making decisions about their children's lives. However, when the exercise of certain beliefs would disadvantage the child's health in a serious way, there are limits in exercising this discretion

What kinds of treatment can parents choose not to provide to their children?

Parents have the right to refuse medical treatments when doing so does not place the child at significant risk of substantial harm or suffering. For example, parents have the right to refuse routine immunizations for their children on religious or cultural grounds.

What is physician aid-in-dying?

Physician aid-in-dying (PAD) refers to a practice in which a physician provides a competent, terminally ill patient with a prescription for a lethal dose of medication, upon the patient's request, which the patient intends to use to end his or her own life.

Do physicians have an ethical duty to disclose information about medical mistakes to their patients?

Physicians have an obligation to be truthful with their patients. That duty includes situations in which a patient suffers serious consequences because of a physician's mistake or erroneous judgment. The fiduciary nature of the relationship between a physician and patient requires that a physician deal honestly with his patient and act in her best interest.

Won't disclosing mistakes to patients undermine their trust in physicians and the medical system?

Some patients may experience a loss of trust in the medical system when informed that a mistake has been made. Many patients experience a loss of trust in the physician involved in the mistake. However, nearly all patients desire some acknowledgment of even minor errors. Loss of trust will be more serious when a patient feels that something is being hidden from them.

I had a long talk with the patient yesterday, and today the nurse took me aside to say that the patient doesn't understand what's going on! What's the problem?

Sometimes patients ask the same question of different caregivers, sometimes they just didn't remember it all, and sometimes they need to go over something more than once because of their emotional distress, the technical nature of the medical interventions involved, or their concerns were not recognized and addressed.

People have rights. Does a fetus have rights?

Still, although the human fetus has the potential for personhood, this does not imply that it is a person or that it has rights. So long as the fetus is attached to the pregnant woman, her body maintains its life, and bars access to it.

What are the elements of full informed consent?

The most important goal of informed consent is that the patient has an opportunity to be an informed participant in her health care decisions. It is generally accepted that informed consent includes a discussion of the following elements: 1. The nature of the decision/procedure 2. Reasonable alternatives to the proposed intervention 3. The relevant risks, benefits, and uncertainties related to each alternative 4. Assessment of patient understanding 5. The acceptance of the intervention by the patient - In order for the patient's consent to be valid, she must be considered competent to make the decision at hand and her consent must be voluntary. - To encourage voluntariness, the physician can make clear to the patient that she is participating in a decision-making process, not merely signing a form.

What happens when an older child disagrees with her parents about a medical treatment?

The wishes of competent older children regarding their medical care should be taken seriously. If the medical caretaker judges a child competent to make the medical decision in question, she should first attempt to resolve the issue through further discussion. If that fails, the medical caretaker should assure that the child's voice has been heard and advocate for the child. In intractable cases, an ethics consultation or judicial hearing should be pursued.

What can hinder physician-patient communication?

There may be many barriers to effective physician-patient communication. Patients may feel that they are wasting the physician's valuable time; omit details of their history which they deem unimportant; be embarrassed to mention things they think will place them in an unfavorable light; not understand medical terminology; or believe the physician has not really listened and, therefore, does not have the information needed to make good treatment decisions.

Are there any special circumstances for DNAR orders?

These circumstances primarily arise when a patient undergoes anesthesia for surgical interventions or requires urgent procedures.

When does a fetus or a newborn become a person?

Viability is the physical capacity for life independent of maternal corporeal support. They argue that newborns and fetuses participate in the social matrix, and that this social role develops over time, beginning prior to birth. Others note that it is impossible to treat fetuses as persons without treating pregnant women as if they were less than persons. The birth of the fetus results in a distinct patient towards whom medical therapy can be individually directed. As such, many believe that the moral status of a developmentally younger newborn supersedes that of an older viable fetus.

Under what circumstances should I call the ethics consultant/service?

You should consider asking for a case consultation when two conditions are met: 1. You perceive that there is an ethical problem in the care of patients, and 2. Health care providers have not been able to establish a resolution that is agreed upon by the patient/surrogate and the clinicians caring for the patient

What does an ethics committee or program do?

ethics committees involve individuals from diverse backgrounds who support health care institutions with three major functions: providing clinical ethics consultation, developing and/or revising policies pertaining to clinical ethics and hospital policy (e.g., advance directives, withholding and withdrawing life-sustaining treatments, informed consent, organ procurement), and facilitating education about topical issues in clinical ethics.


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