ETHICAL AND LEGAL DECISION MAKING
Ethical and Legal Decision Making Gregg VandeKieft, MD MA FAAHPM Providence St. Joseph Health Olympia, WA
Disclosure Dr. VandeKieft has no relevant financial relationships to declare.
Session Objectives • List core principles in clinical ethics. • Describe key concepts of patient decision making and medical surrogacy. • Identify common areas of ethical controversy.
ETHICAL AND LEGAL DECISION MAKING
PRINCIPLES OF CLINICAL ETHICS
Principles of Clinical Ethics • Autonomy – Right of self-determination
• Beneficence – Duty to act in patient’s best interests
• Non-maleficence – primum non nocere (first do no harm)
• Justice – Fairness, equity, protection of the vulnerable
Model for Ethics Case Analysis • Medical Indications – Medical “facts” of the case
• Patient Preferences – As expressed by patient, surrogate, or advance directive
• Quality of Life – As defined from the patient’s perspective
• Contextual Features – Financial, legal, family, care environment considerations
ETHICAL AND LEGAL DECISION MAKING
ETHICAL DECISION MAKING
Elements of Informed Consent • Given in the absence of coercion or duress • The patient has all necessary information to make a meaningful decision, provided in language they can understand • The patient has the decision-making capacity to make a meaningful treatment choice
Decisional Capacity • Distinct from “competence,” which is a legal determination • Patient must be able to: – – – – –
Understand relevant information Reason and deliberate about choices Make a choice consistent with values and goals Communicate a choice Demonstrate stability of choice over time
ETHICAL AND LEGAL DECISION MAKING
Decisional Capacity Assessment • Key questions: does the patient understand… – – – – –
The medical condition The recommended treatment Risks or adverse effects of treatment Treatment alternatives Implications of accepting or declining recommended treatment
Surrogate Decision Makers • Invoked when the patient has been determined to lack decisional capacity • Intent is to represent the patient’s values, goals, and preferences as accurately as possible – to be the voice of the patient
Surrogate Decision Makers • Many states have a legal hierarchy – typically: – – – – – –
Court-appointed guardian Durable power attorney for healthcare Spouse or registered domestic partner Adult children (all must be in agreement) Parents Adult siblings (all must be in agreement)
ETHICAL AND LEGAL DECISION MAKING
Principles for Surrogate Decision-Making • Patient’s likely decision is known – Treatment choices that align with patient’s previously expressed wishes
• Patient’s is known, but their likely decision is not – Treatment choices that align with patient’s known values and goals
• Patient is not known, no sense of their values/goals – Treatment choices that generally promote the patient’s well-being and dignity
Advance Care Planning • The process of communicating preferences regarding future health care needs should one become unable to speak for oneself • Advance directive – A document specifying future treatment preferences, often designating one’s preferred surrogate medical decision maker(s)
ARS Question 1 Stem • You consult on an 83-year-old woman who had a massive intracranial bleed. She is on a ventilator and unresponsive. Her 85-year-old husband and her two sons are at the bedside. One son pulls you aside in the hall and says, “Mom married him 5 years ago and I don’t trust him – he will inherit a lot of money if she dies. My brother and I want to make all treatment decisions.” She has no advance directive.
ETHICAL AND LEGAL DECISION MAKING
ARS Question 1 Options The most appropriate next step is to: A. Ask for an ethics consult B. Inform the husband you will be directing treatment decisions to her sons C. Ask the husband to designate the patient’s sons as Durable Power of Attorney for Health Care D. Review your state’s hierarchy for surrogate decision makers and convene a family meeting to inquire what the patient would choose if she was able
PHYSICIANS’ ETHICAL RESPONSIBILITIES
Medical Professionalism • Personal (intrinsic) attributes – Ethical practice – Reflection and self-awareness – Responsibility/accountability for actions
• Cooperative attributes – Respect for patients – Working with others (teamwork) – Social responsibility Hilton, 2005
ETHICAL AND LEGAL DECISION MAKING
Veracity (truth-telling) • For a person to make fully informed, rational choices they require all relevant information – Requires full, honest disclosure from clinicians – Grounded in the concept of autonomy – Important to first determine the amount of information the patient/surrogate desire
Non-Abandonment • Focus on the patient as a person • Commitment to provide the patient care and guidance now and in the future • Establishes responsibility and accountability for the patient and the physician
Patient Rights: AMA Code of Ethics • Physicians should serve as their patients’ advocates and respect their rights, including: – Courtesy, respect, dignity, and timely, responsive attention to their needs – Information and the opportunity to discuss benefits, risks, and costs of treatment alternatives – Guidance on optimal treatment course
ETHICAL AND LEGAL DECISION MAKING
Patient Rights: AMA Code of Ethics • Patients’ rights (cont.) – Opportunity for questions when they do not fully understand their health status or recommended treatments – To make decisions and have decisions respected – Confidentiality
Patient Rights: AMA Code of Ethics • Patients’ rights (cont) – Access to their medical records – Opportunity for a second opinion – Divulgence of conflicts of interests – Continuity of care – AMA Code of Medical Ethics, Opinion 1.1.3
Burnout • Burnout – “a prolonged response to chronic emotional and interpersonal stressors on the job, which is defined by the three dimensions of exhaustion, cynicism, and inefficiency.” – Maslach, 2001
ETHICAL AND LEGAL DECISION MAKING
Domains of Burnout • Personal – Compulsiveness, neuroticism
• Situational – Career stage, patient population served
• Organizational – Hours spent at work, income, structure of shift work, quantity of paperwork – DesCamp, 2016
Prevalence and Predictors of Burnout in Palliative Care • Prevalence – 62% of PC providers experienced >1 symptom of burnout
• Predictors for higher burnout risk – – – –
Age: younger > older Discipline: non-physicians > physicians Hours: working >50 hrs/wk, working weekends Team support: fewer PC colleagues – Kamal, 2016
Resilience • The capacity to “bounce back” from stresses • Key elements – – – –
Capacity for mindfulness Ability to set reasonable limits Healthy engagement with work challenges A supportive community • Epstein, 2013
ETHICAL AND LEGAL DECISION MAKING
ARS Question 2 Stem • You are medical director for a hospice agency serving an average census of 200 patients. Colleagues in the community tell you that one of your long-standing hospice physicians has become distant and unresponsive. When you approach him about these concerns, he replies: “I’m so far gone, I need a 6 month vacation just to get back to burned out!”
ARS Question 2 Options In response, you should: A. Establish a pay-for-performance metric based on referring providers’ satisfaction with services provided by your hospice team physicians B. Ask your colleague to resign and look for another physician to replace him C. Explore potential personal, situational, and organizational sources of burnout D. Require the physician to register for mindfulness meditation training
ETHICAL CONTROVERSIES
ETHICAL AND LEGAL DECISION MAKING
Non-beneficial Treatments (NBT) • When desired treatments are unable or highly unlikely to achieve desired outcome – aka, “futility” – concept applies to specific therapy in specific clinical scenario, not to patient in general
• Autonomy confers right to refuse recommended treatment, but not the right to demand NBT
Withholding vs. Withdrawing • Patients or their surrogates have the autonomy-based right to decline or stop recommended medical interventions • Ethically, there is no distinction between withholding vs. withdrawing – Emotionally, the two carry different moral weight
Principle of Double Effect • Justifies a moral harm when it occurs as a foreseeable consequence of an action intended to achieve a more desirable good – Attributed to Thomas Aquinas, rooted in Catholic moral theology
ETHICAL AND LEGAL DECISION MAKING
Four Conditions for Double Effect • The act itself is morally good or indifferent • The bad effect is not the means by which the good effect is achieved • The intent is to achieve the good effect; the bad effect is an undesired “side effect” • The desired effect must be sufficiently desirable to justify allowing the bad effect
Altered States of Consciousness • Varying altered states of conscious have different clinical and ethical implications – MCS – Vegetative state – Coma – “Brain death”
Minimally Conscious State • “a condition of severely altered consciousness in which minimal, but definite, behavioral evidence of self or environmental awareness is demonstrated.” – e.g., fixes gaze, follows simple command • Cranford, 2002
ETHICAL AND LEGAL DECISION MAKING
Persistent Vegetative State • “complete unawareness of the self and the environment, accompanied by sleep-wake cycles, with either complete or partial preservation of hypothalamic and brain-stem autonomic functions.” – Must be in vegetative state >4 wks to be persistent – May have complex reflexes • Multi-Society Task Force on PVS, 1994
Coma • Prolonged state of deep unconsciousness, with unresponsiveness to the environmental stimuli, from which one cannot be awakened
Brain Death • The complete loss of brain function, including involuntary activity necessary to sustain life (including brain stem activity) – Cannot survive without artificial life support
• Distinct from “circulatory (or cardiac) death”
ETHICAL AND LEGAL DECISION MAKING
Brain Death: Clinical vs. Legal • 1981 Uniform Determination of Death Act – Intended to provide common standards for determining death – Defines brain death as “irreversible apneic coma”
• Clinical application more nuanced – Law draw “bright line” distinction that may not mirror a given individual’s biological status • Truog, 2018
Access to Care • Based on the ethical principle of justice • The AMA identifies healthcare as a “fundamental human good because it affects our opportunity to pursue life goals, reduces our pain and suffering, helps prevent premature loss of life, and provides information needed to plan our lives.” • AMA Code of Medical Ethics, Opinion 11.1.1
ARS Question 3 Stem • A 67-year-old woman on chronic hemodialysis experiences a large stroke. She has severe dysphagia and cannot take in oral fluids or nutrition. Her husband states he does not want a feeding tube, but he feels obligated to continue dialysis since stopping an established therapy would feel more like “euthanasia,” whereas not starting a treatment is more acceptable to him.
ETHICAL AND LEGAL DECISION MAKING
ARS Question 3 Options You should advise her husband: A. Withholding treatments is more ethically acceptable than withdrawing an established therapy B. There is no benefit in continuing dialysis if she is not receiving nutritional support C. Each therapy should be independently evaluated in terms of the benefits and burdens it provides, and either provided, withheld, or withdrawn accordingly D. An ethics consult is necessary before a decision can be made
References 1. 2. 3. 4.
Maslach C, et al. Job burnout. Ann Rev Psych. 2001;52:397422. DesCamp R, Talarico E. Provider burnout and resilience of the healthcare team. J Fam Med Comm Health. 2016;3:1097-1102. Hilton SR, Slotnick HB. Proto-professionalism: how professionalism occurs across the continuum of medical education. Med Educ. 2005;39:58-65. Kamal AH, et al. Prevalence and predictors of burnout among hospice and palliative care clinicians in the US. J Pain Symptom Manage. 2016;41:690-696.
References • Epstein RM, Krasner MS. Physician resilience: what it means, why it matters, and how to promote it. Acad Med. 2013;88:382-389. • Cranford RE. What is minimally conscious state? West J Med. 2002;176:129-130. • The Multi-Society Task Force on PVS. Medical aspects of the persistent vegetative state. N Engl J Med. 1994;330:1499-1508. • Truog RD. Defining death—making sense of the case of Jahi McMath. JAMA. 2018;319:1859-1860.
ETHICAL AND LEGAL DECISION MAKING
Thank You • Gregg VandeKieft, MD, MA – Phone: 360-493-7763 – Email:
[email protected] – Twitter handle: @vandekieftg
Questions? Please fill out a card for a response during the question and answer session at the end of the day.
