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Ethical Principles – Updated

Ethical, legal, and cultural factors influence decisions about resuscitation. Ideally, these decisions are guided by science, patient or surrogate preferences, local policies and legal requirements, and established ethical principles.

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Principle of Respect for Autonomy - Updated

Respect for autonomy is an important social value in medical ethics and law.1 This principle is based on society’s respect for a competent individual’s ability to make decisions about his or her own health care. Adults are presumed to have decision-making capability unless they are incapacitated or declared incompetent by a court of law. Informed decisions require that individuals receive and understand accurate information about their condition and prognosis as well as the nature, risks, benefits, and alternatives of any proposed interventions. Individuals must deliberate and choose among alternatives by linking their decisions to their values and personal goals of care.

When physicians strive to understand patients’ goals of care, decisions can be made based on the likelihood that together they will achieve the patients’ goals of care. The following 3-step process may assist healthcare providers in ensuring each patient understands and makes informed decisions: (1) the patient receives and understands accurate information about his or her condition, prognosis, nature of any proposed interventions, alternatives, and risks and benefits; (2) the patient is asked to paraphrase the information to give providers the opportunity to assess the patient’s understanding and correct any misimpressions; and (3) the patient deliberates and chooses among alternatives and justifies his or her decisions.2

When decision-making capacity is temporarily impaired by conditions such as active illness, treatment of these conditions may restore capacity. When an individual’s preferences are unknown or uncertain, it is ethically appropriate to treat emergency conditions until further information is available.

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Advance Directives, Living Wills, and Patient Self-Determination

A recent study documented that more than a quarter of elderly patients require surrogate decision making at the end of life. Advance directives, living wills, and executing a durable power of attorney for health care ensure that when the patient is unable to make decisions, the preferences that the individual established in advance can guide care. These decisions are associated with less aggressive medical care near death, earlier hospice referrals for palliation, better quality of life, and caregiver’s bereavement adjustment.3

A healthcare advance directive is a legal binding document that in the United States (US) is based on the Patient Self-Determination Act of 1990.4 It communicates the thoughts, wishes, or preferences for healthcare decisions that might need to be made during periods of incapacity. The Patient Self-Determination Act mandated that healthcare institutions should facilitate the completion of advance directives if patients desire them.4 Advance directives can be verbal or written and may be based on conversations, written directives, living wills, or durable power of attorney for health care. The legal validity of various forms of advance directives varies from jurisdiction to jurisdiction. Courts consider written advance directives to be more trustworthy than recollections of conversations.

A living will may be referred to as a “medical directive” or “declaration” or “directive to physicians,” and it provides written direction to healthcare providers about the care that the individual approves should he or she become terminally ill and be unable to make decisions. A living will constitutes evidence of the individual’s wishes, and in most areas it can be legally enforced.

A durable power of attorney for health care is a legal document that appoints an authorized person to make healthcare decisions (not limited to end-of-life decisions). Simply put, a living will affects the care received, and a durable power of attorney accounts for unforeseen circumstances. The latter decisions may be in conflict with the living will or advance directive; at the time of the unforeseen circumstances they are considered to be valid expressions of the patient’s best interests.5

A comprehensive healthcare advance directive combines the living will and the durable power of attorney for health care into one legally binding document.

As a patient’s medical condition and desire for types of medical treatment may change over time, all types of advance directives should be revisited regularly. Most importantly the presence of an advance directive, a living will, or a durable power of attorney for health care is closely associated with ensuring that personal preferences match the actual care received, as documented in a survey of surrogates for patients of at least 60 years of age who died between 2000 and 2006 and required surrogate decision making at some point in their care.5

A Do Not Attempt Resuscitation (DNAR) order is given by a licensed physician or alternative authority as per local regulation, and it must be signed and dated to be valid.6,7 In many settings, “Allow Natural Death” (AND) is becoming a preferred term to replace DNAR, to emphasize that the order is to allow natural consequences of a disease or injury, and to emphasize ongoing end-of-life care.8 The DNAR order should explicitly describe the resuscitation interventions to be performed in the event of a life-threatening emergency. In most cases, a DNAR order is preceded by a documented discussion with the patient, family, or surrogate decision maker addressing the patient’s wishes about resuscitation interventions. In addition, some jurisdictions may require confirmation by a witness or a second treating physician.

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Surrogate Decision Makers

In the event of incapacity, an adult may require a surrogate decision maker to make medical decisions. In the event that the individual has a durable power of attorney for health care, the person appointed by that document is authorized to make medical decisions within the scope of authority granted by the document. If the individual has a court-appointed guardian with authority to make healthcare decisions, the guardian becomes the authorized surrogate.

If there is no court-appointed or other authority, a close relative or friend can become a surrogate decision maker. Most jurisdictions have laws that designate the legally authorized surrogate decision maker for an incompetent patient who has not identified a decision maker through a durable power of attorney for health care. Surrogate decision makers should base their decisions on the individual’s previously expressed preferences, if known; otherwise, surrogates should make decisions based on their understanding of what constitutes the best interests of the individual.

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Pediatric Decision Making - Updated

As a general rule, minors are considered incompetent to provide legally binding consent about their health care. Parents or guardians are generally empowered to make healthcare decisions on the behalf of minors, and in most situations, parents are given wide latitude in terms of the decisions they make on behalf of their children. Ethically, however, a child should be involved in decision making at a level appropriate for the child’s maturity. Children under 14 years of age in Canada and under 18 years of age in the United States rarely possess the legal authority to consent to their health care except under specific legally defined situations (eg, emancipated minors; mature minors; minors who have specific health conditions, such as those with sexually transmitted diseases or in need of pregnancy-related care). However, as older children develop the capacity to make decisions, it is ethically appropriate to include them in discussions about their care and the treatments using language and explanations suitable for the child’s level of maturity and cognitive function.

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Principle of Futility

Patients or families may ask for care that is highly unlikely to improve health outcomes. Healthcare providers, however, are not obliged to provide such care when there is scientific and social consensus that the treatment is ineffective. If the purpose of a medical treatment cannot be achieved, the treatment can be considered futile.

An objective criterion for medical futility was defined in 1990 for interventions and drug therapy as imparting a <1% chance of survival.9 Although this criterion may be controversial, it remains a basis for current futility research. An obvious example of an inappropriate or futile intervention is providing CPR for a patient who has suffered irreversible death.

Conditions such as irreversible brain damage or brain death cannot be reliably assessed or predicted at the time of cardiac arrest. Withholding resuscitation and the discontinuation of life-sustaining treatment during or after resuscitation are ethically equivalent. In situations where the prognosis is uncertain, a trial of treatment may be initiated while further information is gathered to help determine the likelihood of survival, the patient’s preferences, and the expected clinical course. (Class IIb, LOE C)

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References

  1. Beauchamp TL, Childress J. Principles of Biomedical Ethics. Oxford, England: Oxford University Press; 2008.
  2. Simon JR. Refusal of care: the physician-patient relationship and decisionmaking capacity. Ann Emerg Med. 2007;50:456–461. doi: 10.1016/j. annemergmed.2007.04.016.
  3. Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T, Mitchell SL, Jackson VA, Block SD, Maciejewski PK, Prigerson HG. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300:1665–1673.
  4. Omnibus Budget Reconciliation Act of 1990, Pub. Law No. 1990;101–508.
  5. Silveira MJ, Kim SY, Langa KM. Advance directives and outcomes of surrogate decision making before death. N Engl J Med. 2010;362:1211–1218.
  6. Cerminara KL, Bogin SM. A paper about a piece of paper. Regulatory action as the most effective way to promote use of physician orders for life-sustaining treatment. J Leg Med. 2008;29:479–503.
  7. Payne JK, Thornlow DK. Clinical perspectives on portable do-not-resuscitate orders. J Gerontol Nurs. 2008;34:11–16.
  8. Venneman SS, Narnor-Harris P, Perish M, Hamilton M. “Allow natural death” versus “do not resuscitate”: three words that can change a life. J Med Ethics. 2008;34:2–6.
  9. Schneiderman LJ, Jecker NS, Jonsen AR. Medical futility: its meaning and ethical implications. Ann Intern Med. 1990;112:949–954.
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Ethical Principles – Updated