Interprofessional Webinar Series · Psycho-Oncology 2015 Jan 23 (Epub ahead of print) •Walker A,...
Transcript of Interprofessional Webinar Series · Psycho-Oncology 2015 Jan 23 (Epub ahead of print) •Walker A,...
Interprofessional Webinar Series
Consent to Care:
When Patients Lack Capacity
Pauline Lesage, MD, LLM
Physician Educator
MJHS Institute for Innovation in Palliative Care
Disclosure Slide
Pauline Lesage, MD, LLM, has no financial
arrangements or affiliations with any commercial
entities whose products, research, or services may be
discussed in these materials. Any discussion of
investigational or unlabeled uses of a product will be
identified.
Russell K. Portenoy, MD, Planner, has indicated a
relationship with the following: Pfizer Inc. No other
Planning Committee Member has any disclosures.
Consent to Care
• Consent: General Concepts
• Context of decision-making
• Limitations of involved parties
• Models of decision-making
• Elements of consent
• Consent form
Consent to Care
• Consent: Patient with lack of capacity
• Definition
• Advance Directives
–Health Care Proxy
–Instructional Directives:
•Living Wills
•MOLST
Context of Decision-Making
• Relation to communication
• Influence by communication limitations (barriers) of
parties involved:
• Physician
• Patient
• Third party (family/friend)
Physician Limitations (Barriers)
• Technical language
• Medical uncertainty
• Concern not to alarm patient
• Time
• Denial/personal factors
• Liability
Patient Limitations (Barriers)
• Understanding
• Inattentiveness
• Fear, anxiety
• Effects of illness/medications
• Denial
• Trust
Limitations – Third Party (Barriers)
• Guilt
• Denial
• Trust
• Loss
DECISION-MAKING Model
•PATERNALISTIC
Underlying ethical principle: Beneficence
Person centered: Doctor
Information base: Medical
Decision-making: Unilateral
• INFORMED CHOICE MODEL
Underlying ethical principle: Autonomy
Person centered: Patient
Information base: Medical (personal info not shared
with MD)
Decision-making: Unilateral (patient)
DECISION-MAKING Model
DECISION-MAKING Model
•SHARED DECISION-MAKING
Underlying ethical principle: Autonomy/Beneficence
Relationship centered
Information base: Medical and Personal
Decision-making: Bilateral
Consent to Care
• Legal ground: Autodetermination
• Ethical ground: Principle of Autonomy
• Information
• Authorization
Consent to Care
Consent to Care
• Elements of information
Nature of illness
Nature of procedure or treatment
Probable, foreseeable risks
Results anticipated
Possible choices (risks/benefits)
Consequences of refusal
Answers to questions
Consent to Care
• Risks:
Probable, foreseeable
Rare, if serious and specific to patient
Known by everyone (specific to patient)
Significant (serious, % variable)
Increased (when choice possible)
ANY KNOWN RISK (research)
Consent to Care
• Qualities of the information
Objective
Concise
Understandable
Criteria: reasonable person
Consent to Care
• “fear of knowing”
• “therapeutic privilege”
Consent to Care
• Exceptions:
Emergency (if cannot be obtained in due time)
Exceptions stipulated in the law:
•Mandatory confinement
•Treatment for certain medical conditions
•Alcohol test…, etc.
Consent to Care
• Consent form:
Element of proof not a proof of valid consent
Added element to verbal disclosure
Addition, not a replacement
Consent to Care
• Right to refuse care:
Meets the same conditions required for consent
(information, form)
Patient has capacity
Consent to Care: Lack of Capacity
• Should be made by attending MD
• Confirmed by another MD in writing
• No mandatory need for psychiatric evaluation
• No legal standard criteria for evaluation
Advance Directives
BACKGROUND
• Most states: There is law providing for surrogate decision-making, and families are empowered to make decisions
• 1968 - Introduction of Living Will
• 1990 - United States Self-Determination Act
(existence of AD upon enrollment in HC facility)
• 2010 - New York Family Health Care Decisions Act (FHCDA)
Advance Directives
LEGAL BACKGROUND
• Federal Patient Self-Determination Act requires medical facilities to maintain a policy ensuring compliance with state laws governing advance directives
• Federal Omnibus Budget Reconciliation Act of 1990 requires facilities participating in Medicare and Medicaid to inform patients about advance directives
• New York law requires medical facilities to honor both written and oral directives
Consent to Care: Lack of Capacity
Advance Directives Modalities
• Health Care Proxy
• Instructional Directives (oral/written)
• DNR
• LIVING WILL
• MOLST
Advance Directives
Health Care Proxy
• Definition
A document that designates someone to be an
‘agent’ with authority to make decisions, ideally
representing preferences, but if preferences are
unknown, according to the best interest of the
patient
Advance Directives
Substituted Judgment (SJ)
• SJ refers to attempts to judge as the patient
would have if he/she could have
• Version of “prior preference” guided judgment
Advance Directives
Best Interest
•Based on balance of benefits/burdens
• Although easier conceptually, it involves highly
subjective value assessments
• Best guiding standard when prior preferences
are unknown
Consent to Care: Lack of Capacity
WHO
Health care agent
Surrogate:
• Guardian
• Spouse (if not separated) or domestic partner
• Son/daughter >18 y.o.
• Parent
• Brother/sister >18 y.o.
• Close friend
Advance Directives
Proxy Designation
• Important to understand proxy role
• Proxy often guesses prior wishes of patient inaccurately
• Close relationship with proxy is not a guarantee of better decision-making
• Friends, family members have their own interests and issues, which can conflict with their role (difficulty letting go)
• A physician who is appointed as agent should not be the attending MD
Advance Directives
Health Care Proxy
• Requirements:
Name of patient
Statement that principal intends the agent to have authority to make health care decisions on patient’s behalf
Must be signed and dated by patient
Must be signed and dated by two witnesses
Alternate agent can be designated
Statement as to patient wishes regarding artificial hydration and nutrition, or simply that my agent knows my wishes as to artificial nutrition and hydration
Advance Directives
Living Wills
• Definition
Instructions made by an adult—orally or in writing—
related to medical decisions in the event decisional
capacity is lost
• Supports ethical imperative of autonomy (surviving
interest)
• Ensures that patient’s preferences are considered
in medical decisions
• Can be oral or written
Advance Directives
Living Wills
•Legal aspects
No statute in New York that governs Living Wills
According to NY Supreme Court, a Living Will is valid
as long as it constitutes “clear and convincing evidence”
of your wishes
No standard form. LW will be subject to interpretation...
Advance Directives
Living Wills
• Introduced in 1968 by a lawyer (Kutner)
• Multiple efforts to increase their specificity
• Forms have been validated
• Completion by 25% (NHPCO, 2013)
Advance Directives
Living Wills
• Poor % completion:
Not enough knowledge about it
Reluctance to discuss it
Difficulty to execute
Question about their use
Incompatibility with cultural/ethical beliefs
• Terminology
• Inclusion of medical conditions
• Uncertainty about benefits
• Transmission to health care decision maker
MOLSTMedical Orders for Life-Sustaining Treatment
• Physician’s order signed after consulting with the patient/ surrogate
• Concise form containing specific medical instructions that can be carried out by health care staff
• It may include directives on: DNR
Antibiotics
IV fluids
Feeding tubes
Artificial hydration/nutrition
Mechanical ventilation
Any other medical interventions
• MOLST is legal in New York
Conclusion
• Consent is embedded in communication and subject to its barriers
• When patient lacks capacity, the rules of obtaining consent still apply through advance directives
• Consent does entail specific legal rules
Conclusion
• Clinicians must be comfortable that the agent or surrogate is acting appropriately and in the patient’s interest. If there is question about this, get help from Ethics or Administration
• Previously expressed wishes need to be contextualized. They do not apply to acute, potentially reversible situations
Consent to Care:
When Patients Lack Capacity
Q/A
Bibliography
• American College of Legal Medicine. Legal Medicine.
Philadelphia. Mosby/Elsevier 2007
• Beauchamp, TL. Principles of Biomedical Ethics. New York.
Oxford University Press, 2013
• Feely MA, Albright RC, Thorsteinsdottir B, Moss AH, Swetz KM.
Ethical challenges with hemodialysis patients who lack decision-
making capacity: Behavioral issues, surrogate decision-makers,
and end-of-life situations. Kidney Int 2014;86:474-480
• Miller, FG, Wertheimer A. The Ethics of Consent: Theory and
Practice. New York: Oxford University Press, 2010
• Rich BA. Prognosis terminal: Truth–telling in the context of end-
of-life care. Camb Q Healthc Ethics 2014;23:209-219
• Rozovsky FA. Consent to Treatment: A Practical Guide, 4th Ed.
Aspen Publishers, 2014
Bibliography
• Sinuff T, Dodek P, You JJ, et al. Improving end-of-life
communication and decision-making: The development of a
conceptual framework and quality indicators. J Pain Symptom
Manage 2015 Jan 23 (Epub ahead of print)
• Triebel KL, Gerstenecker A, Meneses K, et al. Capacity of
patients with brain metastases to make treatment decisions.
Psycho-Oncology 2015 Jan 23 (Epub ahead of print)
• Walker A, Breitsameter C. Ethical decision-making in hospice
care. Nurs Ethics 2014 Jun 29 (Epub ahead of print)
• Zalonist R, Slota M. The use of palliative care to promote
autonomy in decision-making. Clin Oncol Nurs 2014;18: 707-711