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2016 Quality of Life Coalition Conference Rick Bassett, MSN, RN, APRN, ACNS-BC,CCRN Adult Critical Care CNS Palliative Sedation: Ethical and Legal Considerations June 13, 2016 Overview • Provide oversight of Clinical Ethics • Recognize fundamental ethical principles involved with providing palliative and EOL care • 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 A format for systematic discovery of 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. Responding to Ethical Issues in Palliative Care • Changes in social/family systems have added to complexity of end-of-life/palliative care and palliative sedation • Landmark cases influence legal/ethical history • Team needs to help patients/surrogates make fully informed decisions • How each team member and the team collectively approaches these clinical situations depends on: • Their knowledge • Their experience • Their ability apply these in creating a safe, ethical and meaningful EOL experience Standards of Professional Practice • Scope of practice & standards of care • Codes of ethical conduct • Guidance for responsible end-of-life/palliative practice • Position statements and guidelines Also known as the “Four Box Method” Medical Indications Quality of Life Patient Preferences Contextual Features 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? Medical Indications Patient Preferences Quality of Life Contextual Features 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? Medical Indications Patient Preferences Quality of Life Contextual Features 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? Medical Indications Patient Preferences Quality of Life Contextual Features Contextual Features • Legal rules • Hospital policies • Family wishes • Conscientious objection by providers • Allocation of scarce resources (triage and justice) Medical Indications Patient Preferences Quality of Life Contextual Features • 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. 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. 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. 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. 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 Principles of Bioethics • Nonmaleficence • Not performing an action that would cause harm to a patient. “Above all, first do no harm.” 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? 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. Double Effect The principle of double effect recognizes that, occasionally, clinicians are faced with a decision that cannot be avoided and, in these circumstances, the decision may cause both a desirable and undesirable effect. With Palliative Sedation we may be concerned about how our actions will affect the timing and circumstances of a patient’s death. The principle states: An ethically permissible effect can be allowed, even if the ethically undesirable one will inevitably follow, when the following conditions are met: The action itself is ethically good or at least indifferent, that is neither good nor evil in itself (e.g., the action is the administration of a drug, a morally indifferent act); The agent must intend the good effects, not the evil effects, even though these are foreseen (in this case, the intention is to relieve pain, not to compromise respiration); and The morally objectionable effect cannot be a means to the morally permissible one (in this case, respiratory compromise is not the means to relief of pain). If this intention becomes primary, the action would be judged unethical. 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 • Requires a thorough consideration of the benefits and burdens of proposed treatment or withholding/withdrawal of treatment 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 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. 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 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 Why Advance Planning? • Nearly half of all Americans die in a hospital • Nearly 70% of Americans die in a hospital, nursing home or longterm 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%) 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 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. Advance Planning Documents POST Other ADs 1. Document designed primarily for those who are seriously ill or have some life limiting condition (i.e. chronic end stage disease, cancer) 2. Is a physician order recognized throughout the healthcare continuum 3. Is active and in force as soon as the document is signed 4. Protected and legally enforced by statute – most states have legislation recognizing post in their state and others that meet the same legal stipulations 5. Requires the input and signature of a LIP 1. Designed for use by all persons over the age of 18 2. Usually has two components a. Durable Power of Attorney for Healthcare – defines and authorizes legal surrogate b. Living will i. 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 ii. provides surrogate and healthcare providers with information regarding wishes c. Additional instructions – provides for details regarding patient wishes (beyond the information in the living will) 3. May be completed with or without a healthcare provider 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 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 lifesustaining/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 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 QUESTIONS