6/11/2018. Objectives. Key Issues re: Clinical Bio-Ethics. Resolving the Ethical Dilemmas During Palliative and End of Life Care

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1 Resolving the Ethical Dilemmas During Palliative and End of Life Care Jane Ellen Barr, DNP, RN Long Island Jewish Medical Center Objectives Discuss the key issues re: Clinical Bio-Ethics Describe one organizations approach, establishment of an Ethics Café, to resolving ethical dilemmas and decreasing moral distress among clinicians Identify key educational components of café Provide exemplars of ethical cases in practice Key Issues re: Clinical Bio-Ethics 1

2 Clinical Bio-Ethics Where our Oath, Values, and Decisions Meet Hippocrates Oath: I solemnly promise, that I will do the best of my ability to serve humanity, caring for the sick, promoting good health, and alleviating pain and suffering. History Gives Insight Evolution of Clinical Bio-Ethics Do Good Do No Harm Do Not Be Unjust Confidentiality Hippocratic (400 BC) Spirituality (400 CE) Vocation or calling Care of the poor, helpless, and terminally ill Non- abandonment Religious and Cultural Duties Rationing? Public Health? Patient Rights? Patient Rights Informed Consent Truth-telling Right to Health Care Access 4 Principles Biomedical (Today) Enlightment (1700 CE) Secular Virtue Clinician-Patient Relationship Paternalism Fiduciary Duty (Contract) 2

3 Evolution of Clinical Bio-Ethics Do Good Do No Harm Do Not Be Unjust Confidentiality Non maleficence Beneficence Justice Plus, Autonomy* Confidentiality Hippocratic (400 BC) Bio-clinical (Today) Spirituality (400 AD) Enlightment (1700 AD) Religious Impact Paternalism Access To Care Cultural Awareness Patient Rights Secondary or Derived Values V a l u e s Δ in Knowledge in Cultural & Social Norms in Personal Life Experiences Ethical Dilemmas Moral Distress Palliative Care Values Evolution and Ethics Communication Low Priority Did not know diagnosis versus Patient full partners Informed Involved in decision making Surrogate decision making Ordinary vs. Extraordinary Care Only ordinary available Versus (new technology ) Complex decisions What extent to prolong life? Access to care? Costs of treatment? Resources available? Patient or Governments or Society s choice Euthanasia Never Versus (Living longer, Increase disabilities, Not to be a Burden, family structural changes) Partial or full support Patient vs. clinician to give fatal dose Who has authority (Government, Church, Individual) in which cases? Moral Status Patient /Personhood Versus (New Areas) Contraception/ emergency contraception Abortion Infertility (artificial insemination, egg donation, surrogate mother) Cloning Genetic screening (confidentiality, employment prospect, insurance implication) Transplantation (who owns the organ? Who gives permission for it to be used?) Clinical Bio Ethics Today a Major Dimension of Practice The changing philosophy of health care with it increasing emphasis on: Principles of personal autonomy (patient) Patient centered care (professional) The evolution of nursing as a profession distinct from medicine The issues of extraordinary vs. ordinary care Lack of ethical case exemplars Increase technology, regulatory pressures, and competitiveness among healthcare providers Increased fiscal shortages with spiraling costs of supplies and medical treatments Public s increasing distrust of the healthcare delivery systems and its institutions 3

4 JUSTICE BENEFICENCE NONMALEFICENCE AUTONOMY BIO-PSYCHO-SOCIAL CONTEXT CULTURE, LAW, WORKPLACE COMPLEXITY OF CLINICAL BIOETHICS All Clinicians Who is Affected? Patients & Families Ethical Dilemmas What are the Major Issues? Moral Distress 4

5 Unconscious Biases Ethical Challenge Patients, families, clinicians, when ethical issues present, bring with them a particular understanding of what makes something an ethical issue or moral problem and how it should be resolved. Always begin resolution with awareness of biases. Healing vs. Palliative Care Paternalism (Maternalism) Beneficence Confidentiality Nonmaleficence Cultural Diversity Ethics vs. Law vs. Regulatory Justice and Fairness Disability Disfigurement Virtue of Caring Autonomy Moral Distress Suffering and Death Establishing the Ethics Cafe Background Status Prior to Initiation of Ethics Café Hospital-wide Medical Bio- Ethics Committee Medical Bio-Ethics Co-Chaired by Physician and Nurse Ethicist Interdisciplinary Representation on Medical Bio- Ethics Committee Complex issues discussed focus on mainly medical issues rarely addressed impact on clinicians All Clinicians could initiate an Ethics Consult Knowledge deficit related to why, when, how to call an ethics consult Critical care areas more familial with Ethics Consults 5

6 Background Events leading to initiation of the Ethics Café: (1)Magnet Site Visit Reviewed several ethical cases where consults were called by nurses and interdisciplinary team focus was on medical ethical concerns After site visit, reflected on question of whether the clinicians concerns and resultant moral distress related to those cases were adequately handled Identified need for clinicians to have an opportunity to identify, analyze, and resolve ethical concerns / issues encountered in practice Acknowledged Moral Residue Background Events leading to initiation of the Ethics Café: (2) Releasing of the 2015 American Nurses Association revision of the Code of Ethics for Nurses Questions raised: How do clinicians interpret their code of ethics How do they apply their code of ethics in everyday practice (3) Limitations identified: Awareness that clinicians have limited clinical ethics training Clinicians often unable or do not have resources to resolve ethical dilemmas encountered in daily practice Initial Step Initiating the Ethics Cafe Top - Down Support Bottom- Up Support Initial meeting with Administration Administration gave full Support Introduced idea to leadership gaining their support Addressed qualification of a leader to facilitate the Ethics Café Completion of Certification Program in Bio-Clinical Ethics Exploring need for Ethics Cafe with frontline clinicians Discussion at unit level Focus groups 6

7 Initial Issues re: Developing Ethics Cafe Structure Safe Place for clinicians to share experiences Focus on issues identified by frontline clinicians Opportunity for education and support, including how to integrate Code of Ethics into practice Opportunity to increase awareness of cultural diversity & sensitivity, unconscious bias Needed to provide allotted time to participate Charter: The Ethics Café The Ethics Café offers an informal setting over coffee and tea for clinicians (interdisciplinary team) to identify, analyze, and resolve clinical ethical issues. Clinical ethics issues are viewed as all of the ethical features/ concerns that are present in everyday clinical encounters as well as the ethical problems that arise during these encounters. Café provides a relaxed atmosphere to learn about ethics, share and tell stories that have caused ethical concerns or moral distress, tie ethical decisions to the Code of Ethics, and to see how the face of moral courage becomes visible when resolving ethical dilemmas. Ethics Café held monthly, all clinicians invited Ethics Café Format Clinicians identify cases, experiences, topics for discussion Literature review done; articles sent to participants prior to meeting; extras brought to the meeting for new members Discussion (evidence review) among the participants Questions generated Case(s) reviewed 4 Principles of Ethics, Code of Ethics, evidence discussed in relation to case(s) Discussion of potential ethical responses, solutions Other ethical concerns, issues 7

8 Ethics Café & Educational Foundation Ethical Dilemma Situations that require a choice between two equal (sometimes undesirable) alternatives Value conflicts, no clear consensus as to the right thing to do (at least initially) A conflict between moral obligations that are difficult to reconcile and require moral reasoning Autonomy vs. Beneficence Case Scenarios Patient 32 year old female admitted through ED after motor vehicle accident. Sustained crushing injuries that require amputation of bilateral legs to stop bleeding, prevent sepsis, and save her life Patient alert and has full capacity (Autonomy) Patient refuses surgery and states I would rather die than live without my legs Vascular Surgeon feels that surgery is necessary and life saving and informs patient of consequences so she can sign consent and have surgery (Beneficence) Patient still refuses surgery Is there an Ethical Dilemma? Moral Distress? For whom? 8

9 Autonomy vs. Beneficence Case Scenarios Patient 32 year old female admitted through ED after motor vehicle accident. Sustained crushing injuries that require amputation of bilateral legs to stop bleeding, prevent sepsis, and save her life Patient alert and has full capacity (Autonomy) Patient refuses surgery and states I would rather die than live without my legs Vascular Surgeon feels that surgery is necessary and life saving and informs patient of consequences so she can sign consent and have surgery (Beneficence) Patient still refuses surgery Patient becomes septic, confused, condition deteriorating Surgeon contacts husband to obtain consent for surgery in an effort to save the patient s life Is there an Ethical Dilemma? Significance of Context? Framework for Analyzing Ethical Issues The 4 Principles of Bioethics Focus = Individual or Providers Autonomy (Of Individual) Beneficence (By Provider) Non Maleficence (By Provider) Justice (By society s standards; Applied by its agents; Including health care providers) Application & Isssues Agreement to respect another's right to selfdetermine a course of action Issues: Informed Consent and Capacity Prevent harm, remove harm, plus, do good Issues: beneficence vs. autonomy; paternalism; beneficence vs. benefits, costs, & risks; beneficence vs. futility Obligation to cause or inflict no harm including deliberate harm, risk of harm, and harm that occurs while doing good Issues: Autonomy vs. Nonmaleficence and Futility vs. Nonmaleficence Justice: fair, equitable, appropriate treatment Distributive Justice: refers to fair, equitable, and appropriate distribution of benefits and burdens determined by norms that structure the terms of social cooperation Framework for Ethical Decision Making How do Clinicians interpret & implement Professional Code of Ethics in practice? Professional Code of Ethics ANA American Nurses Association (2015) Guide to the Code of Ethics Medical Code of Ethics 9

10 ANA Code of Ethics Provision 1: Affirming Health through Relationships of Dignity and Respect Provision 2: The Patient as Foundational Commitment Provision 3: Advocacy s Geography Provision 4: The Expectation of Expertise Provision 5: The Clinician as Person of Dignity and Worth Provision 6: The Moral Milieu of Practice Provision 7: Diverse Contributions to the Profession Provision 8: Collaboration to Reach for Greater Ends Provision 9: Social Justice: Reaching out to a World in Need of Clinical Care Framework for Analyzing Ethical Issues Dimensions of Clinical Bioethics Dimension 1. Moral Status (Of patient, surrogates, significant others) 2. Virtue (Of provider) Application Part of the moral human community Inherit dignity; right to be respected as a person, not to be demeaned, excluded Capable of being related to, appreciated Capable of suffering Altruistic moral character needs to be internalized (patient s interest first) Duty Aspire for best care for every person Empathy and compassion Practical Wisdom ( s with experience) 3. Context (Specific to patient and clinical case) Biological, clinical condition, prognosis Pyscho-spiritual values Social context (family, tradition) Legality, Laws, Rules Framework for Analyzing Ethical Issue Professional Patient Relationships Fidelity Promise Keeping The individual who receives care has an expectation that each clinician will keep promises made directly to the patient, family, and or caregiver Confidentiality Refers to the necessity that clinician hold in strict confidence information that is discovered about the patient during the course of health care practice Veracity Accurate, timely, objective, and comprehensive disclosure of factual information Communication both directions- between clinician and patient Patient has a right to receive truthful information re: diagnosis, prognosis, procedures, and the professional gain a right to truthful disclosures from patients 10

11 Autonomy & Informed Consent Autonomy is respected (ethically and legally) Patient must be informed; able to perform complex weighing of options and outcomes Shared decision making essential: Explore patient s values, goals, acceptance Involves clinician(s), patient, significant others Professionals responsibility to provide information needed for patients to make decisions Pros and Cons of all options Truth telling Clinician aware of own biases Autonomy & Capacity Capacity Ability to make decisions Fundamental component of every clinician patient interaction Starts with assumption that all patients have capacity Explores capacity only when conflict arises re: medical or nursing care Decided for each event or situation Assessing Decision Making Capacity (CUAR) Who assesses? Clinicians who provide care assess capacity Criteria includes assessment of patient s ability to (CUAR): Communicate a choice Understand the relevant information Ask patient to summarize the information that has been presented to ensure understanding Appreciate the situation and its consequences Beyond understanding realizes the significance and consequences of choice insight Reasons and considers relevant information in a rational way Higher order thinking that consistently draws conclusions a rational society would find reasonable, even if most people would disagree 11

12 Ethics of Care Theory Ethics of Care Theory: Care stresses empathetic associations with others- with a strong sense of being responsible Emphasizes mutual interdependence and emotional responsiveness Inclusive of five focal virtues Compassion Discernment Trustworthiness Integrity Conscientiousness Concepts: Surrogate Decision Making Surrogates Criteria: Defined by regulatory / law, plus How well the potential surrogate knows the patient and is familiar with the patient s goals, values, and preferences Whether the potential surrogate is willing to serve as the patient s surrogate (and uphold the patient s goals, values, and preferences) Whether the potential surrogate is capable of the understanding relevant information regarding the patient s situation and engaging in meaningful conversation with healthcare providers Whether the individual is available to participate in decision making when called Concepts: Surrogate Decision Making Substituted-judgement standard: surrogates make decisions on the basis of their knowledge of the patient s specific wishes, goals, values, and preferences Best-interest standard: if patient s wishes or values are not known, surrogates and clinicians should make decisions in accordance with patients best interest 12

13 Futility Concepts: Futility vs. Beneficence Benefit-burden ratio, describes care that is not beneficial to the patient, or not bringing about useful outcomes. Most often associated with EOL issues: patients in vegetative state, need of organ replacement, CPR or life sustaining technology Can be associated with any type of treatments or care management choices Concepts: Futility vs. Beneficence Futility the provision of interventions that will not bring about their intended outcomes Issues: Could this intervention increase quantity of his days, but not improve quality of life, or eventual outcome (Quantitative futility) Could intervention cause actual or potential harm without providing intended benefit (Qualitative futility) Would intervention unlikely prevent death (Imminent-demise futility) Is treatment not reliably expected to support at least the minimal capacity of the patient to interact with his or her environment (Clinical futility) Futility vs. Nonmaleficence Case Scenario: Mr. Smith is a 82 yr. patient admitted for dehydration and sepsis. Critically ill. Recently he underwent a right AKA for severe PAD. Post operatively the wound dehisced, became infected, and he was placed on antibiotics and NPWT was initiated. His general condition has deteriorated this admission.. His nutritional status is poor, he is now in acute renal failure, prognosis is poor. His wife who is his surrogate, refuses to consider palliative care. She insists the NPWT be continued although team has informed her, that in his current condition, it is not beneficial. Is the medical team obligated to continue NPWT? 13

14 Futility and Obligation to Provide Treatments Health care professionals are not obligated to provide treatments: That do not offer patient medical / nursing benefits That are outside the bounds of good practice Where objective evidence about the effectiveness of the intervention, applied to a particular situation, does not exist Even after specific patient or family request for inappropriate treatment Conflicts about whether an intervention is beneficial is often about what are appropriate goals and can these goals be achieved Often better not to focus on one treatment but collective balancing of benefits and burdens American Medical Association, Council on Ethical and Judicial Affairs. (1992). Guidelines for CPR: Ethical Considerations in Resuscitation. JAMA, 268, President s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. (1982). Making Health Care Decisions: The Ethical and Legal Implications of Informed Consent in the Patient-Physician Relationship. Washington, D.C.: U.S. Government Printing Office, 42-44; Nurses Code of Ethics, 2o15] Types of Ethical Dilemmas Often Ethical dilemmas in practice can be identified according to the following classifications: Dilemmas of Autonomy those that involve deciding what course of action maximizes the patients right of self determination Dilemmas of Beneficence and Non Maleficence- dilemmas that involves deciding what is good as opposed to what is harmful Dilemmas of Justice dilemmas that involve dividing limited resources fairly Dilemmas related to patient clinician relationships Dilemmas specific to beliefs of moral status, virtue, and context specific to patient situation Strategies Resolving Ethical Dilemmas 14

15 Strategies to Address Ethical Dilemmas Within Frameworks of Ethical Analysis Clinical Facts Psycho-socialspiritual Facts Cultural Facts Assess Analyze Interpret Apply Ethic Consult Implement Self-refection Act Outcomes Ethical Competency Professional Integrity Moral Courage Confidence Strategies for Resolving Ethical Issues Resolution with Reciprocity: Involving patients in the planning and implementation of their care Building trust between staff and patients Intentional, as well as unintentional, framing can have a crucial impact on patients opportunities to be heard and participate in the process to make treatment related decisions Clinicians have the power to decide the options that frame encounters with patients (while being aware of biases and potential for paternalism) Mutual respect and co-operation Providing all significant information Shared Decision Making Process in Adults ASK- TELL- ASK Begin- by identifying that there is a decision to be made 1. ASK the patient and family views and experience about the issue 1. Clarify values and preferences 2. Explore prior experiences 3. Understand the meaning to the patient and family 4. Share and explore any prior knowledge of the patient s past or present wishes 2. TELL significant medical knowledge / facts without biases about: 1. Patient s disease process and prognosis 2. The positive and negative effects and outcomes of how the decision may alter or not alter the disease process and prognosis 3. The alternative approaches that may be available 3. ASK if there is information that needs more clarification, if they have questions, what they think about the information provided 15

16 Strategies for Ethics Issues re: Religious and Spiritual Practices Religious beliefs and spiritual practices are powerful factors for many in coping with serious illnesses and in making ethical choices Clinicians need awareness of their patients and own beliefs/practices HOPE Tool: Engaging Conversations re: Religion and Spirituality H: Sources of hope, meaning, comfort, strength, peace, love, connection Where do you find comfort or hope in this time of illness? When things are tough, what keeps you going? O: Organized religion Does organized religion have a place in your life, or in your family s life? P: Personal spirituality and practices Are there spiritual practices or beliefs that are personally important? E: Effects on medical care and end-of-life issues Are there ways that your personal beliefs affect your health care choices or might provide guidance as we discuss decisions about your care near the end of your life? Moral Distress Moral Distress is a phenomenon in which one knows the right action to take, but is constrained from taking it. Moral Stress is a psychological state born from an individual s uncertainty about his or her ability to fulfill relevant moral obligations Moral distress is different from the classical ethical dilemma in which one recognizes that a problem exists, and that two or more ethically justifiable but mutually opposing actions can be taken Concept of Moral Stress Moral Stress, Stress of Conscience, Distress 16

17 The Reality of Moral Distress Case Scenario Mary has been a clinician for two years on a medical surgical unit. The unit has just changed focus and has become an oncology unit Today she is assigned to care for Mrs. Walsh, an amiable 70 yr. old woman who after a meeting with her medical team and family has decided to discontinue chemotherapy. It was making her so sick and her tumor had not decrease in size; in fact, the cancer has actually metastasized to her spine and lungs. She just signed a DNR Mrs. Walsh began to talk about her mortality and shared that she was frightened about how she would die. She asked if Mary knew what the end would be like for her Realities of Moral Distress While most care today is standardized EBP algorithms and guidelines, this trajectory is unpredictable This trajectory is an individualized process which requires clinician to delve into the more personal side of patients lives, including hopes, goals, and values; it can be an uncomfortable place Verghese A. My Own Country. New York: Vintage Books; 1995: Strategies for Managing Moral Distress 17

18 Dealing with Moral Distress Communication Strategies Two key components to communicate and offer support. Conversation is the bridge that permits patient, professional, family, caregiver to join in the experience of living towards- death (1) 1. Allow oneself to Go There emotionally and physically (sit with the patient, have an attentive presence, accept silence) 1. Recognize and accept discomfort 2. Exploratory Component: 1. Allow patient and family to Go There and participate in the process 2. Elicit fears and concerns 3. Walk alongside the patient and family 3. Supportive Component: 1. Allay fears 2. Provide information 3. Support patient and family through journey 4. Care for self: debriefing, get feedback, explore personal feelings and emotions re: difficult encounters (1) McQuellon RP, Cowan MA. Turning toward death together: conversation in mortal time. Am J Hosp Palliat Care. 2000; 17(5): 316 Strategies for Coping with Moral Stress 4 A s approach to address and reduce moral distress (AACN) ASK: Review the definition and symptoms of moral distress and ask yourself whether what you are feeling is moral distress. Are your colleagues exhibiting signs of moral distress as well? AFFIRM: Affirm your feelings about the issue. What aspect of your moral integrity is being threatened? What role could you (and should you) play? ASSESS: Begin to put some facts together. What is the source of your moral distress? What do you think is the right action and why is it so? What is being done currently and why? Who are the players in this situation? Are you ready to act? ACT: Create a plan for action and implement it. Think about potential pitfalls and strategies to get around these pitfalls. Exemplars 18

19 Topics Discussed at Ethics Café Case Studies Difficult Patients: Professional Responses The Right to Self Determination: Patients Autonomy vs. Beneficence When a Surrogate does not follow wishes of patient and clinician feels caught in the middle Clinicians duty in an era of shared decision making Truth telling in a patient who has regained capacity After the disaster: caring for self Topics re: Code of Ethics Workplace Violence: Bullying Protection of Patients Rights of Privacy and Confidentiality Patient Protection and Impaired Practice Conscientious Objection Bringing Ethics Hospital Wide Annual Interdisciplinary Ethics Grand Rounds Topics: Balancing Ethical Considerations, Professional Values, and Legal Accountability To feed or not to feed? Supporting patients and families at EOL with decision making Agenda Format Introduction to Ethical Principles Case Presentation Panel Discussion: (Clinicians, Director of Palliative Care, Chairperson of Ethics Café, Members of Ethics Cafe) Participants Reflection and Discussion Ethics Café : Case Study Exemplar Mr. Jones 62 yrs. admitted for failure to thrive; lives alone and has been been independent up to about 2 months ago. Has supportive family. H/O Colon Cancer with metastasis to liver He has full capacity Palliative care consult; has discussed need for pain management, fluids, refuses tube feedings, preference is for DNR / comfort care Currently being managed by medical and palliative care team He is morbidly obese, weighing 350 lbs, confined to bed, and experiencing incontinence of urine and stool (Has lost 60 lbs in past 6 months) Pain is being managed with medications: states pain level 2-4 / 10 Clinicians has ordered bariatric bed, positioning devices (tortoise system) to facilitate movement in bed which he has refused He also refused all basic care including positioning, AM Care, and cleansing after each incontinence episode states he wants to be left alone 19

20 Ethics Café: Case Study Discussion re: Case of Mr. Jones: Case reviewed in relevance to ethical principles of: autonomy, beneficence, autonomy vs. beneficence, paternalism Patient competent; has decided for comfort care / no extraordinary care for medical management Patient identifies comfort care to include being able to refuse all basic nursing care Same rules as medical care? Distinction between ordinary vs. extraordinary care Lack of paradigm cases Moral distress experienced by clinical nurses Legal ramifications Possible ethical responses to a competent person s refusal of nursing care: respecting autonomy vs. paternalism, negotiated response Ethics Café: Case Study Mr. T is a 22 year old male admitted from home for a non functioning PEG tube Has a significant medical history including congenital disorder of dystrophic epidermolysis bullosa (EB; sloughing of the epidermis), PEG tube (placed in infancy), and left lower extremity Squamous Cell Carcinoma (SCC) (EB complication) Primary caregiver and surrogate is his mother who, although patient has full capacity, he has given her permission to make all medical decisions related to his care. She provides all care and does not allow staff to participate in bathing, ADLs, dressing changes, etc. Mother insists patient not to be told about SCC for fear it will cause him despair Concern for staff (medical and nursing) is that they have not been able to assess and determine extend of impaired skin integrity secondary to EB, Pressure, and IAD (at least 60% epidermis is denuded) Staff concern re: mother s dressing techniques (does not wear gloves or properly wash hands), that after episodes of diarrhea the mother provides cleansing only when given permission by patient (often only once a shift); etc. Ethics Café: Exemplifier Discussion of Case of Mr. T: Conflict between patient s right to refuse care and nurses sense of duty to provide care (conflict between autonomy and nonmaleficence) Concern re: legal obligation (regulatory mandates) to prevent and manage pressure injuries; prevent infection (beneficence and nonmaleficence) Concern of obligation (duty) to intervene if clinicians observation of skin care procedures by mother places patient at risk for infection (beneficence) Conflict with not being able to have truth telling with patient except through mother (Conflict between truth and hope) Conflict of identifying boundaries of surrogates Possible ethical responses of setting limits, contracts, joint efforts in care 20

21 Key Issues in Ethics re: Context Case Scenario Mrs. M was 74 years old who after extensive surgery for necrotizing fasciitis developed DVT, PE and CVA. She has been intubated in ICU for three months. She is considered to be in a vegetative state. After meeting with the palliative care team, the husband agree to have his wife removed from ventilator but insisted tube feedings and fluids be continued. She was transferred to a long term care facility but re admitted within 2 months for pneumonia. She was treated with antibiotics. Palliative care team again spoke to husband and since there was no change in vegetative status, the issue of artificial feedings again was discussed. The husband stated that he and his wife were practicing Catholics and that nutrition in their religion was considered natural and necessary care- so he wanted it continued. How does patient and surrogates religious values impact ethical decisions to continue feedings and fluids? How do issues of moral status, virtue, and context help understand this decision? How could Quantitative, Qualitative, or Clinical Futility, or Justice, or Autonomy be discussed related to this case? Exemplar Mrs. M is a 59 years old and first day post-op after R/BKA for infected gangrene right foot. She requested to be left alone and just wants her pain medication and to be left to sleep. Her clinician notices her dressing is soiled and needs to be changed- but patient insists it can wait. The clinician is concern that knowingly not changing dressing as scheduled may place patient at risk for infection. Should clinician respect patient s right to refusal to dressing change? What actions are necessary for the clinicians? Issue key to concepts of ordinary vs. extraordinary care Autonomy vs. Nonmaleficence Exemplar Case Scenarios: Patient who has multiple co morbidities and whose general health status has been deteriorating, is admitted with multiple full thickness wounds, osteomyelitis's, treated with antibiotics; he develops C. diff. Not responsive to treatment for C. Diff. Goals of care palliative approaching end of life, although a DNR has not been signed. Mother is surrogate and after doing her own research insists that her son be given fecal transplantation. 21

22 Exemplar What do you do if the surrogates wishes regarding their loved ones care differ from yours and from the accepted medical care they want full support or care or want no support or care, which is different from accepted standard of care? Should the patient s long-term prognosis (quality of life) affect decision making? Should resource allocation (finances, beds, staffing) or psychosocial issues (e.g. families moral distress) be part of the medical decision? Ethical Issues: Beneficence, Futility, Balancing Benefits, Costs, Risks In summary, making ethical decisions, coping with moral stress, are complex, challenging issues, etc... Not as simple as Yes or No but Complex issues that clinicians use Multiple Frameworks to Resolve Ethics Café Outcomes and Take Away Immeasurable Outcomes: I am so happy to learn that other clinicians experience the same difficulties and concerns in these situations I feel better now that I had the opportunity to talk about how I felt when this patient died I wasn t able to sleep for nights It is so nice to have a venue to talk about stressful issues and not bring it home to my family who really don t understand I feel more empowered to be the patient s advocate 22

23 Measuring Outcomes Ethics Café Survey Please indicate how your overall knowledge/ skill level has changed as a result of today s experience at the Ethics Café : Low Moderate High Before Café After Café I plan to make changes in my clinical practice as a result of this experience: Yes No If yes, what change: Learning this content will positively impact my personal and / or professional life: Yes No 23