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Resolving the Ethical Dilemmas During Palliative and End of Life Care

Jane Ellen Barr, DNP, RNLong 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

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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

• Secular Virtue• Clinician-Patient

Relationship• Paternalism

• Fiduciary Duty (Contract)

• Patient Rights• Informed Consent• Truth-telling• Right to Health

Care Access• 4 Principles

• Vocation or calling• Care of the poor,

helpless, and terminally ill

• Non- abandonment• Religious and

Cultural Duties

• Do Good• Do No Harm• Do Not Be Unjust• Confidentiality

Hippocratic(400 BC)

Spirituality (400 CE)

Enlightment (1700 CE)

Biomedical (Today)

Rationing?Public Health? Patient Rights?

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Evolution of Clinical Bio-Ethics

• Non maleficence• Beneficence• Justice• Plus, Autonomy*• Confidentiality

• Do Good• Do No Harm• Do Not Be

Unjust• Confidentiality

Hippocratic (400 BC)

Spirituality (400 AD)

Enlightment (1700 AD)

Bio-clinical (Today)

Secondary or Derived Values

Values

Δ

∆ in Knowledge∆ in Cultural & Social Norms∆ in Personal Life Experiences

Ethical Dilemmas ≈ Moral Distress

ReligiousImpact

Cultural Awareness

AccessTo Care

Paternalism

PatientRights

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 EthicsToday 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

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BENEFICENCE

NONMALEFICENCE

AUTONOMY

BIO-PSYCHO-SOCIAL CONTEXT

CULTURE, LAW, WORKPLACE

COMPLEXITY OF CLINICAL BIOETHICS

JUSTICE

Who is Affected? All Clinicians Patients & Families

What are the Major Issues? Ethical Dilemmas Moral Distress

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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

Suffering and Death

Disability

Disfigurement

Cultural Diversity

Ethics vs. Law vs. Regulatory

Beneficence

Nonmaleficence

Autonomy

Justice and Fairness

Paternalism (Maternalism)

Virtue of Caring

Confidentiality

Moral Distress

Unconscious Biases

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 CommitteeComplex issues discussed focus on mainly medical

issues – rarely addressed impact on clinicians All Clinicians could initiate an Ethics ConsultKnowledge deficit related to why, when, how to call an

ethics consult Critical care areas more familial with Ethics Consults

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BackgroundEvents leading to initiation of the Ethics Café:

(1)Magnet Site VisitReviewed 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…

BackgroundEvents 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 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

Bottom- Up Support “Exploring “ need for

Ethics Cafe with frontline clinicians Discussion at unit

level Focus groups

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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 broughtto the meeting for new members

Discussion (evidence review) among theparticipants

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

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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?

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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 IssuesThe 4 Principles of Bioethics

Focus = Individual or Providers Application & Isssues

Autonomy(Of Individual)

•Agreement to respect another's right to self-determine a course of action•Issues: Informed Consent and Capacity

Beneficence(By Provider)

•Prevent harm, remove harm, plus, do good•Issues: beneficence vs. autonomy; paternalism; beneficence vs. benefits, costs, & risks; beneficence vs. futility

Non Maleficence(By Provider)

•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 (By society’s standards; Applied by its agents;

Including health care providers)

Justice: fair, equitable, appropriate treatmentDistributive Justice: refers to fair, equitable, and appropriate distribution of benefits and burdens determined by norms that structure the terms of social cooperation

Professional Code of EthicsANA American Nurses Association (2015)

Guide to the Code of Ethics

Medical Code of Ethics

How do Clinicians interpret & implement Professional Code of Ethics  in practice?

Framework for Ethical Decision Making

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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 IssuesDimensions of Clinical Bioethics

Dimension Application

1. Moral Status(Of patient, surrogates, significant others)

•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

2. Virtue(Of provider)

•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 IssueProfessional –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

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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

interactionStarts with assumption that all patients have

capacityExplores capacity only when “conflict” arises re:

medical or nursing careDecided 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

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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

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Concepts: Futility vs. Beneficence

Futility 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 ?

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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, 2282-2288. 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]

Futility and Obligation to Provide Treatments

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

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Strategies to Address Ethical Dilemmas

• Clinical Facts• Psycho-social-

spiritual Facts• Cultural Facts

Assess

• Interpret• Apply• Ethic Consult

Analyze • Implement• Self-refection

Act

OutcomesEthical CompetencyProfessional Integrity

Moral CourageConfidence

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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 made1. 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 prognosis2. The positive and negative effects and outcomes of how the decision

may alter or not alter the disease process and prognosis3. 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

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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, connectionWhere do you find comfort or hope in this time of illness?When things are tough, what keeps you going?

O: Organized religionDoes organized religion have a place in your life, or in your family’s life?

P: Personal spirituality and practicesAre there spiritual practices or beliefs that are personally important?

E: Effects on medical care and end-of-life issuesAre there ways that your personal beliefs affect your health carechoices or might provide guidance as we discuss decisions about yourcare 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 StressMoral Stress, Stress of Conscience, Distress

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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: 363-364.

Strategies for Managing Moral Distress

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Dealing with Moral DistressCommunication 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 discomfort2. Exploratory Component:

1. Allow patient and family to “Go There” and participate in the process2. Elicit fears and concerns3. Walk alongside the patient and family

3. Supportive Component:1. Allay fears2. Provide information3. 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 Stress4 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

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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

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Ethics Café: Case StudyDiscussion 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

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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.

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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…

Complex issues that clinicians useMultiple Frameworks to Resolve

but

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”

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Measuring OutcomesEthics Café SurveyPlease indicate how your overall knowledge/ skill level has changed as a

result of today’s experience at the Ethics Café :

Low Moderate HighBefore 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 ▢