Sarah E. Shannon, PhD, RN

Slide 2 Ethics: Health care Decision Making TNEEL-NE The Legal & Ethical Basis in Health Care Decision Making Nurses and other health care professionals have a duty to be familiar with the laws that relate to health care decision making. Most of these laws occur at the state level rather than at the federal or local level. In this area, the law tends to closely mirror the commonly held cultural and ethical beliefs around health care decision making.

Slide 3 Ethics: Health care Decision Making TNEEL-NE The Law & Health Care Decision Making Three main topics to discuss: –Informed consent –Surrogates –Advance directives

Slide 4 Ethics: Health care Decision Making TNEEL-NE Case: Clara Clara, 68-year-old Lives alone Loves to garden Has rheumatoid arthritis and hypertension, controlled with medications.

Slide 5 Ethics: Health care Decision Making TNEEL-NE Who should be allowed to make the final choice about which treatment, if any, you will have? Clara’s Response Imagine that Tomorrow You are Faced with a Major Health Care Decision

Slide 6 Ethics: Health care Decision Making TNEEL-NE Ethical Basis for Health Care Decision Making Principle of Autonomy: Respect for the right of the individual to self- determination requires: –Liberty: Independence from controlling influences. –Agency: Capacity for intentional action.

Slide 7 Ethics: Health care Decision Making TNEEL-NE What information would you want to help you make a decision about what treatment to have? Clara’s Response If You Were Faced with a Serious Illness...

Slide 8 Ethics: Health care Decision Making TNEEL-NE Ethical Elements of Informed Consent The person must give consent. Person must be competent. The person must understand what is disclosed. The decision must be voluntary (rather than coerced or forced). Relevant facts must be disclosed.

Slide 9 Ethics: Health care Decision Making TNEEL-NE Content of informed consent discussion from Washington State Law RCW Legal Basis for Informed Consent Example: State Law Proposed treatment; Anticipated results from treatment; Recognized possible alternative forms of treatment; Serious possible risks, complications, and anticipated benefits from proposed and alternative treatments including non-treatment; Or a statement that the patient elects to not be informed.

Slide 10 Ethics: Health care Decision Making TNEEL-NE Content of informed consent discussion from “Please enter your own state” Legal Basis for Informed Consent (Your State)

Slide 11 Ethics: Health care Decision Making TNEEL-NE Two Parts of Informed Consent: Process Component Process Component –The discussion: Based on fidelity or the trust that is the basis of the relationship between the health care provider and the patient

Slide 12 Ethics: Health care Decision Making TNEEL-NE Two Parts of Informed Consent: Product Component Product Component –The evidence that the discussion has taken place (e.g., signed form versus chart note versus verbal versus implied by cooperation). –The type of evidence required depends on institutional policy usually based on a perception of legal risk.

Slide 13 Ethics: Health care Decision Making TNEEL-NE Who would you want to make health care decisions for you? Clara’s Response If You Could Not Speak for Yourself...

Slide 14 Ethics: Health care Decision Making TNEEL-NE Washington State Law RCW (1) specifies order of surrogates: Order of Surrogacy for Incapacitated Individuals: Example Court-appointed guardian Durable Power of Attorney for Health Care Spouse Adult children of patient* Parents of patient* Adult brothers and sisters of patient* * Must be unanimous decision

Slide 15 Ethics: Health care Decision Making TNEEL-NE Order of Surrogacy for Incapacitated Individuals “Insert your state code” specifies order of surrogates:

Slide 16 Ethics: Health care Decision Making TNEEL-NE How would you want your surrogate to make health care decisions for you? On what basis? Using what information? Clara’s Response Ask Yourself...

Slide 17 Ethics: Health care Decision Making TNEEL-NE Standards for Surrogate Decision Making Substituted Judgment: –Making the choice the incapacitated person would make if they were able; acting on knowledge of what that person would wish to have. Best Interests: –Doing what is in the person’s best interests.

Slide 18 Ethics: Health care Decision Making TNEEL-NE Response A: Response B: “What do you want us to do for your aunt? “What do you think your aunt would have wanted if she were able to speak for herself?” Skills Building Exercise How can a health care professional cue a surrogate to use a substituted judgment standard? Which response is better?

Slide 19 Ethics: Health care Decision Making TNEEL-NE How would your surrogate know what you wanted? Clara’s Response Think About This...

Slide 20 Ethics: Health care Decision Making TNEEL-NE Types of Evidence of Previous Wishes: Written Evidence Written evidence: –Advance Directives (e.g., Living Will, Directive to Physician, or Refusal of Blood Products). –Other statements of wishes such as videotape, audio tape, or personal letter.

Slide 21 Ethics: Health care Decision Making TNEEL-NE Types of Evidence of Previous Wishes: Verbal Evidence Verbal evidence: –Conversation with family, friends, or professionals regarding one’s wishes.

Slide 22 Ethics: Health care Decision Making TNEEL-NE Types of Evidence of Previous Wishes: Relational Evidence Relational evidence: –Personal knowledge of a individual; –Knowing history of a person’s choice, values, and other relevant information.

Slide 23 Ethics: Health care Decision Making TNEEL-NE Before any person authorized to provide informed consent on behalf of a patient not competent to consent exercises that authority, the person must first determine in good faith that patient, if competent, would consent to the proposed health care. If such a determination cannot be made, the decision to consent to the proposed health care may be made only after determining that the proposed health care is in the patient's best interests. Two Standards for Surrogates: Best Interests Standard If no information exists about what a person would have wanted, surrogates are obligated to do what is in the patient’s best interests. Example: Washington State RCW (3)

Slide 24 Ethics: Health care Decision Making TNEEL-NE Review 1: Informed Consent Laws & Surrogates Competent Patients Informed Consent Laws legally protect the moral right of competent patients to consent to or refuse any and all recommended therapies, including life- sustaining therapies with several exceptions. These exceptions typically are based on public health concerns such as involuntary treatment for drug-resistant tuberculosis, mandated childhood immunizations, etc.

Slide 25 Ethics: Health care Decision Making TNEEL-NE Review 2: Informed Consent Laws & Surrogates Incapacitated Patients Informed Consent Laws legally protect the moral right of incapacitated patients to have a surrogate/s consent to or refuse any and all recommended therapies, including life-sustaining therapies. Surrogates are held to a higher standard. They are not allowed to make unusual, eccentric, or poorly reasoned choices for others without strong evidence that the choice reflects the patient’s wishes.

Slide 26 Ethics: Health care Decision Making TNEEL-NE ADs constitute written evidence of a person’s wishes. ADs are more frequently completed by white, middle to upper-class individuals. Advance Directives (ADs) Advance Directives are one way that individuals can make their wishes for end-of-life treatment known in advance of losing their mental capacity.

Slide 27 Ethics: Health care Decision Making TNEEL-NE Types of Advance Directives Specify treatment preferences (e.g., Living Will, Directive to Physician, Medical Directives, etc.) Specify surrogate decision-maker (e.g., Durable Power of Attorney for Health Care, proxy directive) Specify both treatment preferences and surrogate/s decision-maker/s.

Slide 28 Ethics: Health care Decision Making TNEEL-NE Procedural Issues for ADs Any competent adult can complete. An advance directive cannot be completed by any one other than the individual to whom it applies. Forms can be obtained from any primary health care provider, hospital, nursing home or health maintenance organization. Does not require a lawyer to complete. Can be rescinded at anytime for any reason.

Slide 29 Ethics: Health care Decision Making TNEEL-NE When Should an AD be Consulted in Decision-making? Two conditions must be met: Threshold Condition: –The patient MUST have lost decision-making capacity due to a condition that is not reversible. Terminal or other specified diagnosis: –The patient must be in a condition that is specified under state law such as terminal, persistent vegetative state, irreversible coma, or as specified in the AD.

Slide 30 Ethics: Health care Decision Making TNEEL-NE What Therapies can be withheld or Withdrawn Based on an AD? Any therapy. Life-sustaining therapy (including mechanical ventilation, blood transfusions, dialysis, antibiotics, etc.). Some states specifically include artificially- provided nutrition and hydration because this has been the most problematic treatment to withdraw.

Slide 31 Ethics: Health care Decision Making TNEEL-NE Natural Death Acts What Legal Protections are offered by Natural Death Acts? Protection for health care professionals from criminal, civil, or professional (usually licensure) sanctions. Protection for patients and/or their families from determining the death to be a suicide, or being forced to go “AMA” to leave the hospital.

Slide 32 Ethics: Health care Decision Making TNEEL-NE Example: RCW Washington State Natural Death Act RCW If a qualified patient capable of making health care decisions indicates that he or she wishes to die at home, the patient shall be discharged as soon as reasonably possible. The health care provider or facility has an obligation to explain the medical risks of an immediate discharge to the qualified patient. If the provider or facility complies with the obligation to explain the medical risks of an immediate discharge to a qualified patient, there shall be no civil or criminal liability for claims arising from such discharge.

Slide 33 Ethics: Health care Decision Making TNEEL-NE Example: RCW Washington State Natural Death Act RCW Any physician, health care provider acting under the direction of a physician, or health facility and its personnel who participate in good faith in the withholding or withdrawal of life-sustaining treatment from a qualified patient in accordance with the requirements of this chapter, shall be immune from legal liability, including civil, criminal, or professional conduct sanctions, unless otherwise negligent.

Slide 34 Ethics: Health care Decision Making TNEEL-NE Patient Self-Determination Act (Federal Level) Specifies that all providers receiving Medicare or Medicaid reimbursement must: Develop written policies concerning ADs. Ask all new patients if they have an AD and document answer in patient's chart. Provide written material about institutional policies and patients’ rights under state law to prepare an AD. Educate staff and the community about ADs. Ensure that patients are not discriminated against on the basis of whether or not they have an AD.

Slide 35 Ethics: Health care Decision Making TNEEL-NE Do-Not-Resuscitate (DNR) Orders & Advance Directives Distinctions An Advance Directive is a statement of a patient’s preferences that may or may not include resuscitation preferences. A DNR order is a physician’s order, not an AD. A DNR order specifies withholding CPR only and should not be routinely interpreted to mean “comfort care only.” The DNR order can be acted upon immediately by any health care professional.

Slide 36 Ethics: Health care Decision Making TNEEL-NE The Relationship Between DNR Orders & Advance Directives An AD may help a physician or others decide if a DNR order is the "right" decision for a particular patient. An AD is not necessary in order for a physician to write a DNR order (with the exception of New York State). A hospital-based DNR order should not require the patient's or family's signature but does require the physician’s signature. An AD does require the patient's signature but does not require the physician’s signature or participation. A patient with an AD should not be assumed to be “no code” patient!

Slide 37 Ethics: Health care Decision Making TNEEL-NE Approximately half the states in the US have legislation allowing for out- of-hospital no code orders that can be honored by “first responders” such as EMS personnel. "Portable" or Community-based DNR Orders Community-based DNR orders allow emergency medical services to respond to emergency calls but to not perform CPR should the patient arrest.