Ethical and Legal Aspects of Advanced Care Planning (ACP)

1. End-of-Life Decision Making and the Role of the Nephrology Nurse Module II Ethical and Legal Aspects of Advanced Care Planning (ACP)

2. Objectives • Identify ethical and legal principles underlying ACP decisions in the U.S. • Describe the factors which influence patients as they make ACP decisions. • Identify ethical nurse behaviors to assist patients and families as they make ACP decisions. • List 2 resources available to assist patients in making and documenting ACP decisions.

3. Introduction • All individualsmake life decisions based on their own values, beliefs, culture, religion and life experiences. • Access to life-sustaining technology creates the need to make decisions about initiation or withdrawal of therapy. • Health care professionals also bring their own values and beliefs about the appropriateness of therapy.

4. Introduction (cont) • Conflicts surface when there is disagreement about when therapies should be used. • Ethical principles assist patients and health care providers to make appropriate decisions based on the needs and wishes of the patient. • Legal decision-making also includes the use of ethical principles when conflicts cannot be resolved through discussion or mediation.

5. Ethical concepts underlying ACPdecision-making include… Autonomy or self-determination Beneficence Non-maleficence Justice Futility Substitute judgment What do these mean in the context of Advanced Care Planning (ACP)?

6. Clinicians use these principles in assisting patients to make the right decisions for themselves. Each of these concepts are rarely used alone, but balance each other to guide an ethical conduct of care.

7. Consider this situation….. Mrs. W., a 72 year old widow, is a Type 2 diabetic with COPD and history of transient ischemic attacks. She has been on chronic hemodialysis for 5 years. Following a dialysis unit initiative to offer ACP to all new and current patients, Mrs. W. initiates this conversation with her primary nurse. Mrs. W. has strong opinions favoring limitation of life-sustaining therapies if she is judged to be in an irreversible and terminal condition. However, her only daughter resists this decision, fearing the potential loss of her mother and wishing to maintain her life despite the possibility of a future poor prognosis.

8. Supporting Mrs. W to make decisions which honor her own beliefs and wishes recognizes the role of ….Autonomy (Self-Determination) The moral and legal right of a person with decisional capacity to determine what will be done with their own person. This respects the right of each person to make decisions regarding their own body and course of life.

9. And Mrs. W.’s story continues… Mrs. W. is brought to the ED after suffering a cerebral vascular accident at home. Shortly after admission and before studies can be done to assess the degree of her condition, she experiences a respiratory arrest. The ED team initiates artificial respiration in an attempt to forestall cardiac standstill and is successful. After a few moments, Mrs. W. is breathing independently and transferred to the ICU. Later that night, Mrs. W. again suffers respiratory failure. Unsuccessful attempts are made to restore breathing, and an endotracheal tube is inserted and artificial respiration is initiated.

10. Beneficence • A moral obligation to act for the benefit and in the interests of others. • Often balanced by the need to avoid risk and to fulfill obligations to self and others. • Linked to principle of utility, which requires a balance of benefits and drawbacks to produce best overall results.

11. Non-maleficence • A moral obligation not to inflict harm intentionally. • Usually balanced with beneficence, in that obligations not to harm others (non-maleficence) are sometimes more stringent than obligations to help them (beneficence) and visa versa.

12. In cases such as that of Mrs. W…… • Initiation of life-saving measures may be indicated (beneficence) if there is uncertainty about the outcomes of therapy and how much benefit there willbe for the patient. • Withdrawal of life-sustaining therapies (non-maleficence) may be appropriate when they are no longer beneficial or desirable for the patient and produce negative outcomes.

13. Rule of Double Effect (RDE) • This is used to support acts that may have two effects, one intentional and the other possible, but not intentional. • Four conditions justify an ethically permissible act: • The act must be beneficial. • The person carrying out the act must intend only the good effect. • The bad effect must not be a means to the good effect. • Benefits of the good effect must outweigh those of the bad effect.

14. Example of Rule of Double Effect Administering medication to relieve pain and suffering which may also produce decreased respirations and hasten time of death.

15. Consider what ethical principle is violated when….. Patients receive preferential attention or care based on ethnic, racial or economic characteristics. OR Patient care decisions are based solely on previous social history or impressions made by caregiver staff during prior interaction with the patient.

16. Justice Fair, equitable, and appropriate treatment in light of what is due or owed to persons. An injustice involves a wrongful act or omission that denies one benefits to which they have a right or distributes burdens unfairly.

17. Distributive Justice • Fair, equitable and appropriate distribution of resources based on justified norms. • Sometimes an issue in provision of dialysis services when resources are limited. • In these cases, decisions may be based on an assessment of medical utility or the expected benefit of treatment for individuals.

18. What principle describes situations in which… A comatose patient receiving life-sustaining therapy has a poor prognosis for recovery and is assessed to be in constant pain. OR The condition of a patient with several life-threatening co-morbidities does not improve after a trial period of hemodialysis.

19. Futility A situation in which providing treatment produces burdens which far outweigh benefits in providing that care. Implementation of any treatment that cannot achieve a therapeutic benefit for the patient in light of the patient’s overall status and life goals.

20. What Patients Care About When Making ACP Decisions Dialysis patients have identified the following as important: * Receiving adequate pain and symptom management * Avoiding inappropriate prolongation of dying * Achieving a sense of control * Relieving burden on loved ones * Strengthening relationships with loved ones Singer, P.A., Martin, D.K. & Kelner, M. (1999). Quality End-of-Life Care: Patients’ Perspectives. JAMA, 281(2), 163-168.

21. Family Preferences in Making ACP Decisions Further research has shown that: • Family members often lack the knowledge of patients’ values and preferences when functioning as surrogate decision makers. • Written and oral instructions by the patient assisted to match surrogate decisions with patient wishes. • ACP as facilitated by the health care team is most effective and less threatening when conducted in stages, first encouraging general discussion. Hines, S., Glover, J., Babrow, A., Holley, J., Badzek, L., & Moss, A. (2001). Improving Advance care Planning by Acomodating Family Preferences. Journal of Palliative Medicine, 4(4), 481-489.

22. Timing of ACP Decisions • Initial discussions can occur as early as initiation of ESRD treatment. • General discussion can occur first – who surrogate should be, who should be included in decision making, etc. • All decisions should be periodically revisited, especially after acute illnesses. ACP is an ongoing process, and patients have the right to “change their mind.”

23. Factors Affecting Decision-Making and Communication • Cultural, ethnic and age-related differences in approaches to decision-making. • Capacity or ability to comprehend information, contemplate options, evaluate risks and consequences, and communicate decisions as determined by clinicians (articulate benefits and burdens). • Competence or ability to make decisions as determined legally by a court of law.

24. Determination of Capacity • At times, patients are legally competent but do not have capacity to make all health care decisions. • Clinician determination of capacity are documented in the medical record according to facility/state protocols. • In these cases, decisions are made by proxy or surrogate (person previously determined by patient to make health care decisions) or by family members as determined by law.

25. Role of Surrogate or Proxy These designated decision-makers accept the responsibility of carrying out the patient’s expressed wishes and also upholding the substitute judgment standard, using knowledge of the patient’s beliefs and values to make care decisions which could not have been anticipated.

26. Rule of Thumb Rightness or wrongness of an action depends on the merits of the justification underlying the action, not the action itself. Every situation needs to be evaluated in its own context, so that patients, families and caregivers can achieve comfort and trust in the final decisions.

27. Federal Initiatives AffectingEnd-of-Life Decisions • US Supreme Court, 1990 – upheld the right to self-determination, including patients no longer able to direct their own care, stating that decisions for incompetent persons should be based on previously stated wishes. • Federal law, 1991 – The Patient Self-Determination Act requires that patients be informed of their rights to accept or refuse treatment and to specify care decisions in advance of possible incapacity.

28. Judicial Decisions Affecting End-of-Life Care • When end-of-life decisions are not able to be made with agreement among all involved parties, the state judicial system is frequently used as a last resort. • In some cases, suits invoking federal laws may be heard in federal courts. • Thus, “case law” develops and informs future court decisions for similar cases.

29. Examples • Karen Quinlan (New Jersey, 1976) • Baby K (U.S. Circuit Court, 1994) • Nancy Cruzan (Missouri, 1990) • Terri Schiavo (Florida, 2002)

30. Why is it ethically important for patients to make ACP decisions • Family members often do not have adequate knowledge of the patient’s wishes without previous discussions about specific end of life choices. • The principle of autonomy or the right to make decisions about one’s own life is highly valued in U.S. culture and underlies our legal approach to end-of-life-decisions. • Legal challenges to appropriate care are minimized with anticipated and documented end of life choices.

31. State Initiatives AffectingEnd-of-Life Decision Making • State Law – Patient’s right to specify wishes in advance has been codified into statute in 47 states. • Statutory documents used in advanced care planning are described and defined in state statute. • Web resources such as www.caringinfo.org can be used to access specific state documents supporting advanced care planning.

32. Types of ACP Directives • Living Will – describes the type of treatment an individual desires in certain situations (ventilation, nutrition, etc.) • Durable Power of Attorney for Health Care – designates a spokesperson for the patient when he/she is unable to make and/or communicate medical decisions.

33. Types of ACP Directives (cont) • Do Not Resuscitate (DNR) OrderorAllow a Natural Death – patient direction not to initiate cardiopulmonary resuscitation if breathing or cardiac function ceases (may be initiated from contents of living will). • Withholding or Withdrawing of Treatment - e.g. dialysis, antibiotics, hydration, nutrition, other therapies)

34. Living Wills • Advantages - Allows specific documentation of treatments desired in specific situations. - Establishes clear and convincing evidence of patient wishes - Can be easily changed by patient over time. • Limitations - Does not include surrogate decision maker. - Does not provide guidance for unanticipated situations.

35. Durable Power of Attorney for Healthcare/ Health Care Proxy (HCP) • Advantages - Decisions able to be made by chosen proxy in case of incapacitation. - Covers all unanticipated decision needs not included in living will. • Limitations - Requires frank and detailed discussion between patient and proxy, which is often difficult to initiate. - Some individuals may not have access to someone close enough to serve this function.

36. Allow a Natural Death or Do Not Resuscitate Order (DNR) • Advantages - Accepted by physicians and health care facilities in every state. - Can be initiated through patient’s verbal request – forms available in health facility. • Limitations - Only relates to incidence of pulmonary and cardiac dysfunction (does not cover other problems). - Must be renewed on regular basis through discussion with MD.

37. Withholding/Withdrawing of Treatment • Advantages - Outlines wishes for specific treatments. - Demonstrates personal beliefs re circumstances in which burdens outweigh benefits. - Trial period for selected therapies offers families time to adjust to severity of condition and probable futility of further treatment prior to withdrawal. • Disadvantages - May require multiple decision points along illness trajectory. - Family must be ready for patient’s death once decision is made.

38. Example: Tool to Convert Patient Wishes into Physician Orders • The POLST Form – a standardized medical order form citing patient wishes for life-sustaining treatment. • Carried by patient at all times or kept in medical record if patient is institutionalized. • Implemented or partially implemented in several states and can be used legally in case of incapacitation. • Visit below address for more information. www.nursingworld.org/MainMenuCategories/EthicsStandards/Codeofethicsfornurses.apx

39. Principles Guiding Nurses to Facilitate Advance Care Planning • The relationship between a patient and nurse is one of competence, compassion, support and advocacy. • Prevention and relief of suffering as well as provision of comfort to the patient and family are critical when facing end-of-life issues. • Ethical issues can occur in caring for the nephrology patient, often presenting difficult dilemmas.

40. Principles Guiding Nurses to Facilitate Advance Care Planning • Conflicts in making end-of-life decisions can best be resolved using a foundation of ethical practice and facilitation. • Resources available to nurses in understanding standards of ethical practice include: * the ANA Code for Nurses, * the Nurse Practice Act in each state, and * Ethics Committees available in most healthcare institutions.

41. Resources • American Nurses Association Code of Ethics at www.nursingworld.org/ethics/ecode.htm • End-of-Life Module #1 (2005) - go to www.annanurse.org • RPA/ASN publication, Shared Decision-Making in the Appropriate Initiation and Withdrawal from Dialysis – go to www.kidneymd.org

42. Additional Web Resources • www.caringinfo.org • www.ohsu.edu/ethics/polst • www.che.org/ethics • www.bioethics/gov