Rick Bassett, MSN, RN, APRN, ACNS-BC,CCRN Adult Critical Care CNS

1. 2014 Quality of Life Coalition Conference Rick Bassett, MSN, RN, APRN, ACNS-BC,CCRN Adult Critical Care CNS Healthcare Ethics: To Serve and Protect A Practical Approach to Understanding the Clinical Ethics of Advance Planning June 2, 2014

2. Overview • Provide oversight of Clinical Ethics Model • Understand the model elements and how that applies to the advance planning process • Recognize fundamental ethical principles • Understand the role of decision-making capacity in addressing advance planning and healthcare wishes • Identify the key differences between the Idaho POST and other Advance Planning documents • Understand role as a member of the healthcare team in preparing, interpreting and executing advance planning documents

3. A format for systematic discoveryof all pertinent information "The fragment gives insight into the whole, the total picture. The shadow brings insight to the light.“ -Monet In examining a particular ethical issue, it is frequently the "fragment" that gives insight into the process of resolution and understanding because its significance has been overlooked. In examining a patient's narrative or history through chart review and conversation with all those involved and we can discover information that can lead to clarity and resolution. The Jonsen model provides a framework for this systematic review.

5. Also known as the “Four Box Method”

6. MedicalIndications Patient Preferences Quality of Life ContextualFeatures Medical Indications and the Goals of Medicine • What is the diagnosis? Is the problem acute, chronic, reversible, emergent? • What are the goals of treatment from the patient and physician perspectives? • How likely or unlikely is success for the various treatment options? • What are the risks and burdens of treatment or non-treatment, and what are the potential benefits?

7. MedicalIndications Patient Preferences ContextualFeatures Quality of Life Special Considerations Related to Patient Preferences • Has the patient been fully informed of potential benefits and risks, processed this information, and given consent? • Is the patient mentally and emotionally capable of giving consent? (capacity) • Are the expressed patient preferences consistent with previously expressed wishes? Are Advance Directives in place? • If the patient is unwilling to cooperate with the recommended treatment, why? • If incapacitated, who is the appropriate surrogate decision maker?

8. MedicalIndications Patient Preferences Quality of Life ContextualFeatures Quality of Life • By the patient’s estimation, what was their previous quality of life? What are the prospects for returning to that baseline? • If unlikely to return to that QOL, what level of QOL is acceptable to the patient? • Are there any biases on the part of surrogate decision-makers or providers that might prejudice their evaluation of the patient’s QOL?

9. MedicalIndications Patient Preferences Quality of Life ContextualFeatures Contextual Features • Legal rules • Hospital policies • Family wishes • Conscientious objection by providers • Allocation of scarce resources (triage and justice) • Issues of public health and safety • Patient/family financial constraints • Religious preferences • Conflicts of interest among providers, or within the institution. • Other parties who have an interest in the decisions made.

10. After the information is gathered, then what? • This is a fact gathering model, not a decision making tool. • Once the information is sorted, the relationship between that information and ethical principles must be assessed. • Sometimes, reflection upon the data will naturally lead to clarity on the problem and solutions. Other times, a conflict remains and communication between relevant parties is necessary to share information, understand divergent perspectives, and work toward a solution that most (if not all parties) find acceptable.

11. What is Ethics? • "Ethics has to do with what my feelings tell me is right or wrong.""Ethics has to do with my religious beliefs.""Being ethical is doing what the law requires.""Ethics consists of the standards of behavior our society accepts.""I don't know what the word means.”

12. What is Ethics? • What then is Ethics? • Well based standards of right and wrong that prescribe what humans ought to do, usually in terms of rights, obligations, benefits to society, fairness, or specific virtues -Velasquez, Andre, Shanks, and Meyer (2001) • The study and development of one's ethical standards • Continuous effort of studying our own moral beliefs and our moral conduct in order to effectively render professional opinion and care • A set of principles and values that govern the delivery of patient care

13. Values • Are standards or qualities which you consider worthwhile or desirable. • Help you to establish a sense of purpose and direction. • Act as guideposts that assist you in decision making and measuring the quality of life. • Have a great deal of affect over your choices, decisions, and how you view the world and others around you.

14. Value clarification • A series of strategies to help you identify core and supporting values • Raise issues, confront inconsistencies, sort out our values. • It is a “process” to determine the content and power of your values (not one size fits all). • A self-audit, an inventory to freely choose your values.

15. Values.. • The clearer you are about what you value: • The better able you are to choose and initiate a response that is consistent with what you say you believe……. • You become conscious of your values • This is very important when making value judgments on behalf of patients.

16. Which way do I go?

17. Principles of Bioethics • Suggest direction or proposed behaviors • Serve as guides to organizing and understanding ethically relevant information in a dilemma. • They propose how to resolve competing claims. • They are the reasons justifying moral action. • Ethical principles are universal in nature. They are not absolute.

18. Principles of Bioethics • Autonomy • The view that one’s actions are independent from the will of others. Moral autonomy is the freedom to reach one’s own values about what is right and wrong.

19. Principles of Bioethics • Beneficence • Performing an act which is good or which brings about good effects. • Requires three types of action • Preventing harm • Removing harm • Doing good, even at some cost and risk to oneself

20. Principles of Bioethics • Nonmaleficence • Not performing an action that would cause harm to a patient. “Above all, first do no harm.”

21. Principles of Bioethics • Justice • A group of norms for distributing benefits, risks and costs fairly. These norms are typically reflective of societal norms and values and while they may be “fair” they may not be “equitable”. • What is fair? • What is equitable?

22. Principles of bioethics • Futility of Treatment • When a patient is so seriously ill or injured that sound clinical judgement would suggest that the goals of restoration of health and function seem beyond attainment. • When treatment goals can no longer be met regardless of intervention.

23. Informed Consent • Informed consent: • Strong legal and ethical concepts providing the foundation for this process • Central to the moral and legal rights of persons • Requires members of the healthcare team to understand their role with regard to their discipline and the informed consent process

24. What is Meant by Informed Consent? • Permission granted in the knowledge of the possible consequences, typically that which is given by a patient to a doctor for treatment with full knowledge of the possible risks and benefits. • Informed consent is a legal term that denotes that a person is or has been made fully aware of the facts of a certain situation (in this case, a medical procedure) before agreeing to it. In order to obtain informed consent, the physician is both ethically and legally responsible to discuss RISK, BENEFITS and ALTERNATIVES : • For example: • The diagnosis • Details about the procedure or treatment, and why it is being recommended • The risks and benefits involved • Any possible alternative treatments • The risks and benefits of any alternatives • The risks and benefits of NOT undergoing the treatment or procedure

25. Elements of Informed Consent • Disclosure or Information • While Disclosure requires the physician to provide the patient with the information necessary to make an autonomous decision, they must also ensure that patient has adequate comprehension of the information provided • Capacity or Comprehension • Capacity pertains to the ability of the patient to both understand the information provided and form a reasonable judgment based on the potential consequences of his/her decision. • Voluntariness or Freedom from Undue Coersion • Voluntariness refers to the subject’s right to freely exercise his/her decision making without being subjected to external pressure such as coercion, manipulation, or undue influence.

26. Moral Values and Principles • Truth and Honesty • Full disclosure and support of a relationship of trust • Recognizes the value of self-determination and the ethical principle of Autonomy • Respect • We have an ethical duty to protect the human rights and human dignity • Belmont Report • Foundational document defining key ethical principles of human research • Upholds the concept that our actions are consistent with and supportive of

27. Clinical Standards for D-M-C • 1. Patient can communicate • 2. Patient understands consequences/risks/benefits of choice • 3. This choice is consistent with values • 4. Decision is not result of delusions, medication side effects, psychosis, coercion • 5. Patient can process information logically

29. Decision-Making Capacity Myths • DMC and legal competency are the same • Autonomy • Assent • Lack of DMC can be presumed when patients go against medical advice • Autonomy • Justice • Contextual features

30. Decision-Making Capacity Myths • DMC is an all or nothing phenomenon • Some patients may lack DMC to make any decisions • Some patients may have limited DMC and able to make less complex decisions • Some patients may have full DMC and able to make complex decisions weighing multiple risks and benefits Ex. Demented patient and abx tx for a UTI vs. same patient and weighing the multiple and complex risks and benefits of a neurosurgical procedure with uncertain tradeoffs between quality and quantity of life While cognitive ability and DMC are co-related, cognitive tests (i.e. MMSE) should not be used as a substitute for determining DMC This also applies to those with certain psychiatric disorders. While they may have limitations they frequently have at least some DMC

31. Decision-Making Capacity Myths • The lack of DMC is a permanent condition • DMC can change over weeks/months for less temporary conditions or over minutes for acute issues affecting DMC (i.e. TBI vs. acute delirium) • Who can assess DMC? • Only a trained psychiatrist • Only physicians • Only Social Workers and Physicians • All clinicians responsible for patient care

32. Jonsen Model Medical indications • Diagnosis and treatment of the pathological condition • Demographics • age, gender, etc. • Medical Hx • Goals of treatment • Plan in case of therapeutic failure Quality of Life • What are the prospects with or w/o treatment for return to “normal life.” • HCP bias that might prejudice evaluation of patient’s QOL • Are physical, mental &/or social deficits likely to accompany successful treatment? • Is present or future QOL possibly viewed undesirable by patient w or w/o treatment? • Any plans for comfort or palliative care? • Patient Preferences • Patient’s preferences re: treatment • RBA, informed consent • Competency, decision making capacity • Prior preferences-Advanced Directive • Who is surrogate? • Patient agreeable to treatment • Patient’s autonomy respected • Contextual Features • Family/HCP issues influencing treatment • Financial or economic factors • Religious or cultural factors • Problems with allocation of resources • Legal implications of treatment decisions • Provider or institutional conflict of interest • Clinical research or teaching involved

33. Case Overview MEDICAL INDICATIONS • 53 yo male admitted with hematemesis, elevated WBCs and lactate and dehydration with a hx of chronic anemia, cirrhosis r/t chronic ETOH abuse, tobacco use. • EDG with esophogeal lacerations • 7th admission in 8 months • Developed new GI bleed in hospital • Renal and hepatic function worsening • Delirius • Mech. Ventilated and transitioned to CPAP

34. Case Overview PATIENT PREFERENCES • In previous admissions has always insisted on aggressive treatment and full code status • Sister doesn’t think that he would want to live in a diminished state QUALITY OF LIFE • Declining in recent years • Very unlikely that we will be able to restore him to any similar quality of life • CONTEXTUAL FEATURES • Estranged from family • ETOH rehab multiple times w/o success

35. Discussion • What are the key pieces of information under : • “Medical Indications” • “Patient Preferences” • “Quality of Life” • “Contextual Features” • As an ethics committee how would you approach this consult? • What is/are the primary ethical issue(s)? • Are there any cases that provide precedence in how this is handled?

36. Why Advance Planning? • Nearly half of all Americans die in a hospital • Nearly 70% of Americans die in a hospital, nursing home or long-term care facility • 7 out of 10 Americans say they would prefer to die at home • However, only 25% of Americans die at home • >80% of patients with chronic diseases say they want to avoid hospitalization and intensive care when they are dying • Only 20-30% of Americans report having an advance directive • Even when they do have an AD, physicians are often unaware of the patient’s preferences (reportedly 25%)

37. Advance Planning Documents • Physician Orders for Scope of Treatment (POST) • Replaced the Comfort one in July 2007 • Legally recognized • Inpatient • Outpatient • Clinics • MD offices, etc. • Intended to direct care consistent with patient wishes • Not just a DNR form

38. Advance Planning Documents

39. Advance Planning Documents

40. Advance Planning Documents

41. Advance Planning Documents

42. Surrogate Decision-making Who decides? 1. The legal guardian of the patient 2. The person named in the Durable Power of Attorney for Healthcare 3. If married, the spouse of the patient 4. The adult son or daughter 5. A parent of the patient 6. Any relative representing himself or herself to be an appropriate responsible person to act under the circumstances 7. Any other competent individual representing himself or herself to be responsible for the health care of the patient 8. The attending physician, if none of the foregoing exists or is available.

44. Advance Planning Documents POST • Document designed primarily for those who are seriously ill or have some life limiting condition (i.e. chronic end stage disease, cancer) • Is a physician order recognized throughout the healthcare continuum • Is active and in force as soon as the document is signed • Protected and legally enforced by statute – most states have legislation recognizing post in their state and others that meet the same legal stipulations • Requires the input and signature of a LIP Other ADs • Designed for use by all persons over the age of 18 • Usually has two components • Durable Power of Attorney for Healthcare – defines and authorizes legal surrogate • Living will • only in force when the criteria have been met (If person is unable to communicate instructions AND has an incurable or irreversible injury, illness or condition AND a medical doctor has certified that the condition is terminal AND life support would only serve to artificially prolong life AND death is immenent • provides surrogate and healthcare providers with information regarding wishes • Additional instructions – provides for details regarding patient wishes (beyond the information in the living will) • May be completed with or without a healthcare provider

45. Ethics of Palliative Care • Autonomy • What are the patient’s defined goals? • Have all their options been provided to them? • Beneficence • Do their goals reflect what will provide the most “good?”

46. Prolongation of Life and Quality of Life • Life sustaining treatments • Palliative vs. prolonging suffering • Provides time for family • Is not incompatible with DNR • What is life-sustaining? • Nutrition, hydration, dialysis

47. Withholding/Withdrawing Treatment • Withholding - the act of not instituting measures that would serve to either prolong life or delay death. • Withdrawing - the removal or discontinuation of life-sustaining/life-prolonging therapies of a treatment considered medically futile in promoting an eventual cure or control of disease or symptoms • Lesage & Latimer, 1998; Sulmasy, 1998

48. Developmentally Disabled • Currently two standards in place for decision making • Competent persons • Gives provision for surrogate decision makers to act in behalf on one who is unable to make their own decisions • If decision is felt to be in the best interest of the patient the ability to withhold or withdraw treatment is not limited • Developmentally delayed persons with a court appointed guardian • Gives limited provision to the appointed guardian to act as the surrogate in behalf of the patient • Ability to withhold or withdraw treatment is conditional • No physician or caregiver shall withhold or withdraw such treatment for a person whose condition is not terminal or whose death is not imminent

49. Conclusion • Ethical discernment, discourse, decision-making • Application of principles of ethics to create best solutions to complex ethical dilemmas at the end of life • Address values and understanding of needs • Advocate for patient/family rights • Work closely with other disciplines

50. QUESTIONS