Deciding for Special Populations PHHE 435

During this session, we discussed the complexity of decision-making, decision-making capacity, informed consent, and advanced directives. Describe how landmark court cases (ex. Salgo, Candura, etc.) and federal legislation discussed in our reading work to protect an individual/patient’s rights (autonomy, self-determination). How does this support an Ethics of the Good?

A Sample Answer For the Assignment: Deciding for ‘Special’ Populations PHHE 435

Title: Deciding for ‘Special’ Populations PHHE 435

Deciding for ‘Special’ Populations PHHE 435 and 535 Ethical Decision Making for Health Professionals • Very young children – best interest, not substituted judgement Dan Cabrera, Ph.D. [email protected] 815-753-0613 Module 5B Deciding for Others Master of Public Health Program – Copyright ©. Board of Trustees of Northern Illinois University. All Rights Reserved. • Older children – more complex – May have some grasp of concepts – Ability to give consent – Not have maturity Older Children • Specific nature of some conditions makes selection of parents as proxies difficult for physicians – ex. drug abuse, sexual, pregnancy Photo Credit: tup wanders Deciding for Special Populations Photo Credit: Pedro Ribeiro Simoes Photo Credit: Ramesh Lalwani Older Children Older Children • Historically parents have had almost total control of minor children • Not thought to have rights • Parents made all health care decisions • Movement to protect welfare of children • Restrict demands parents could make on minor children • Not give room for decision making Photo Credit: Pedro Ribeiro Simoes Photo Credit: Pedro Ribeiro Simoes 1 Older Children Older Children • Currently, older minors are thought to be given a major role in decisions affecting life – ex. decision of health care treatment • Parents do have an interest in children • Parental guidance should not be disregarded entirely Photo Credit: Lance Nellson Photo Credit: Ramesh Lalwani • When is it morally appropriate for parents/proxy to have nothing to to with the decision? • When is it morally appropriate that they share in decisions on health care? • Minimum age for Minors to make health care decisions Photo Credit: Jon Phillips When is it Morally Appropriate Photo Credit: Jon Phillips Older Children Decision-Making Capacity Criteria • Do not want to disenfranchise a child capable of deciding • Do not want to force decision-making on a child not yet ready for it • Understanding • Evaluation • Reasoning Photo Credit: Lance Nellson Photo Credit: Jon Phillips When is it Morally Appropriate 2 Decision-Making Capacity Criteria • Understanding – relevant information of treatment, can communicate to provider • Piaget developmental scheme child not able to understand diagnosis, prognosis, impact of treatment until age 11 Photo Credit: mirJoran Decision-Making Capacity Criteria Photo Credit: Damian Gadal Decision-Making Capacity Criteria Decision-Making Capacity Criteria • Evaluation – framework of values to judge decision – good ? • Piaget, Kohlberg – mature moral judgement has the capacity to make at about age 12 • What is good and bad? Not Necessarily Cognition Moral Development Photo Credit: Enokson Decision-Making Capacity Criteria Decision-Making Capacity Criteria • Reasoning – Deliberate/reason number of options (all) and possible outcomes • Capacity to reason abstractly at age 12 – deductive reasoning – consider numerous options, generate hypotheses, make conclusions, test against experience Cause Effect Photo Credit: Sjaak Photo Credit: DFID – UK Department for International Development 3 Decision-Making Capacity Criteria Decision-Making Capacity Criteria • Capacity to reason abstractly at age 12 – reason simultaneously about alternative treatments and risk associated with each • Below age 12, children may not have the capacity to make health care decisions • Parents/proxy must do it for them Photo Credit: Phillppe Put Photo Credit: DFID – UK Department for International Development Decision-Making Capacity Criteria Emancipated Minors • What role do parents play in the health care decisions of children 12-18 ? • When would parents/proxy not have authority to make health care decisions ? • • • • Photo Credit: Tammy McGary Photo Credit: YWAM Orlando No longer living at home Supporting themselves Marriage Entry into military • Ambiguous – college students living away, yet being supported – minor who runs away from home • Accepting consent from minors for treatment of sexually transmitted diseases, drug abuse, and prenatal care is legally acceptable in many states • Why ? Photo Credit: Mike Mantin Minor Treatment Statutes Photo Credit: matthew Hunt Emancipated Minors 4 Contraception • Allow sexually active unmarried minors to give consent for contraceptive medical interventions • Might generate some debate Photo Credit: haleybean91 Abortion Contraception • 1979 – Supreme Court issued opinion that required states to consider pregnant minors too immature to give authentic informed consent for abortion to provide alternative procedure not force minor to seek parental consent Photo Credit: Phil Roeder • Contraceptive sterilization • Most physicians /people would find this morally objectionable Photo Credit: haleybean91 Minors Deciding • What was the procedure ? • Minor appears before judge who determines whether minor has capacity to give informed consent • Trend allowing minors to make own decision has good and bad features from an ethical point of view: Photo Credit: Phil Roeder Abortion Photo Credit: Banalities 5 Minors Deciding Gradual Transition Minors Deciding Parent Participation Parent Participation • There are many situations where good ethics suggest the participation of parent • Even though minor may have achieved decisionmaking capacity • Making decisions for minors 12-18 requires a great deal of prudential reasoning Photo Credit: VSPYCC • 1) Parents usual proxies for children without capacity unless behavior disqualifies them from making decisions Parent Participation • 2) Parents make decisions for older minors with qualified substitute judgement and best interest standards: Photo Credit: VSPYCC Parent Participation Photo Credit: Pablo.ezeklel • Bad • Impact it has on the legitimate interest of parents to care for their children Photo Credit: VSPYCC • Good • Bad • Recognizing • Notion of autonomy increasing capacity of and selfmaturing minor to determination limited accept responsibility value for life • Lack of maturity and experience 6 Parent Participation • 2) Parents make decisions for older minors with qualified substitute judgement and best interest standards: – Few minors have expressed preference – best interest of patient and of others in the family Photo Credit: VSPYCC Photo Credit: VSPYCC • 2) Parents make decisions for older minors with qualified substitute judgement and best interest standards: – Few minors have expressed preference Parent Participation • 3) When children start to achieve some capacity to understand and consent voluntarily, parents should include to degree possible • 4) When minors have achieved capacity, parents should still play a role in decision-making unless not constructive Photo Credit: VSPYCC Parent Participation Photo Credit: VSPYCC Parent Participation • 5) Occasionally responsible parents want to make informed refusal of normal life saving treatment for children – Ex. Refusal of Blood Transfusions • Court orders the treatment • Removes child from parents custody (temporary) and appoints guardian to give consent • Supreme court decision (Prince vs. Massachusetts — Martyr Photo Credit: Abir Anwar Court Involvement Photo Credit: VSPYCC Parent Participation 7 Deciding for the Mentally Ill Deciding for the Mentally Ill • Important moral questions ? – Is it moral to place the mentally ill in institutions against their will simply because they might harm themselves or others ? • Important moral questions ? – Is it moral to force treatment on them against their will ? Photo Credit: Karl-Ludwig Poggemann Photo Credit: Karl-Ludwig Poggemann Deciding for the Mentally Ill Deciding for the Mentally Ill • Important moral questions ? – Is their informed consent truly voluntary if we have made it clear to them that they will be confined to an institution if they do not accept treatment ? • Definition of mental illness ? • Physicians have considerable leeway in diagnosing patient’s behaviors Photo Credit: Karl-Ludwig Poggemann Photo Credit: Karl-Ludwig Poggemann Three important Issues MI and Decision-Making Capacity • Relationship between mental illness and decisionmaking capacity • Decision to commit/restrain the mentally ill against their wishes • Decisions to treat the mentally ill against their wishes • Many MI individuals have not been found incompetent by legal system • Retain decision-making capacity • If lost it, may be temporary • Capacity is task specific (joke) 8 MI and Decision-Making Capacity MI and Decision-Making Capacity • Physician has to determined whether patient is able to: – Understand – Evaluate – Reason – Give consent freely • MI often does affect one or more of these criteria – ex. Schizophrenia – ex. Severe depression Photo Credit: ryan melaugh Decision to Commit • Decisions by proxies to commit mentally ill persons are both morally and legally difficult • Detention, not treatment • Need strong reason for it • Danger to themselves • Danger to others Photo Credit: Fayez Closed Account Decision to Commit Conclusion Photo Credit: Ben Seldelman 9 Imagine PHHE 435 and 535 Ethical Decision Making for Health Professionals Dan Cabrera, Ph.D. [email protected] 815-753-0613 Module 5A Deciding for Others Photo Credit: Kamaljlth K V Master of Public Health Program – Copyright ©. Board of Trustees of Northern Illinois University. All Rights Reserved. Photo Credit: Rolands Lakis Objectives Proxy (Surrogate) • Deciding on a medical proxy • Standard for making decisions • Deciding for special populations • Makes decision for patient who has lost decisionmaking capacity Photo Credit: Kathryn Three Essential Components Three Essential Components • Understanding • Evaluation • Reasoning • Any one compromised, don’t have decision-making capacity Photo Credit: U.S. Army Photo Credit: Chelesea Nesvig 1 Who Decides Capacity? Who Decides Capacity? • Who decides presence/absence of decision-making capacity ? • Lacks capacity • Lacks capacity in a limited way – Does patient have capacity to decide treatment/time particular Photo Credit: Open Knowledge Photo Credit: meesh Who Decides Capacity? Who Decides Capacity? • Physician must identify proxy – Already designated – Identify appropriate proxy if one not designated • Is proxy serving the interest of the patient ? • Ultimate responsibility is to the patient ….. Photo Credit: Sean MacEntee Photo Credit: dreamingofariz Who Decides Capacity? • Patient Designated Proxy • Family Member Proxy Photo Credit: dreamingofariz Patient Designated Proxy • Patient specifies while still having capacity Photo Credit: dreamingofariz 2 Family Member as Proxy • Physician needs to identify • Share decision-making • Provide informed consent Family Member as Proxy • Spouse • Parent(s) • Adult Children Photo Credit: dreamingofariz Photo Credit: dreamingofariz Family Member as Proxy Significant Other • Does relative closeness guarantee knowledge of one’s wishes ? • Physician must ask….. – Why would patient want/not want intervention • May have better idea than family member if little recent contact • What if there is conflict with family members ? Photo Credit: Pedro Ribeiro Simoes Proxies must … Proxies must … • • • • • • • • Know/care about patient Aware of patient’s desires Available Willing to become informed Photo Credit: Pedro Ribeiro Simoes Know/care about patient Aware of patient’s desires Available Willing to become informed – diagnosis – prognosis – Treatments – side effects – risks Photo Credit: Pedro Ribeiro Simoes 3 Court Appointed Court Appointed • None available • Conflicts between family members, ask for inappropriate treatment • Guardian health care decisions • Guardian’s decision has priority over any other proxy • Can challenge, but not overrule Photo Credit: Nathan Laurell Photo Credit: Nathan Laurell Court Appointed example Court Appointed • Can become very complicated changing the complexity of case • Jane Doe -• 33 years old • Canavan’s Disease – deteriorating CNS – irreversible • Had been institutionalized SMR Photo Credit: Nathan Laurell Photo Credit: Nathan Laurell Court Appointed example Court Appointed example • No indication of awareness • Physicians needed informed consent to perform surgical procedure (gastrostomy tube) • Parents refused to give consent Photo Credit: Nathan Laurell • Institution sought support from court • Court appointed three representatives for Jane Doe Photo Credit: Nathan Laurell 4 Court Appointed example Court Appointed example • 1) Lawyer (legal interest) • 2) Guardian of her person (for as long as guardianship is in effect) • 3) Guardian ad litem (for particular case) • Guardian of her person and Guardian ad litem requested to have existing nasogastric feeding tube withdrawn • Judge agreed Photo Credit: Nathan Laurell Court Appointed example • • • • Photo Credit: Nathan Laurell Court Appointed example Lawyer did not agree, challenge State Supreme court affirmed lower court decision Adversarial relationship Demonstrates how one issue can be displaced by another Unexpected developments Recourse to courts Photo Credit: Nathan Laurell • Seriously ill abandoned child Massachusetts • Physicians thought DNR order would be best • Department of Social Services (DSS) disagree • Took to court, MDs ask to allow to enter DNR order • Appointed guardian ad litem sided with DSS, child’s lawyer • Judge ruled DNR order to be entered in medical chart Photo Credit: Seattle Municipal Archives Judges as Proxies Photo Credit: Seattle Municipal Archives Judges as Proxies 5 Judges as Proxies • Condition of child changed • Even physicians felt DNR order should be removed • Judge refused to cancel • Judge found that if competent, the child would still not want to be resuscitated • The judge(s) became the proxy decision maker for the child • Massachusetts Supreme Court agreed Photo Credit: Seattle Municipal Archives Photo Credit: Seattle Municipal Archives Judges as Proxies Judges as Proxies • Parent had abandoned child • State assumed legal custody • Judge was quite active, took a decisive role in overruling other proxies • Did it for refusing medical treatment Photo Credit: Seattle Municipal Archives Photo Credit: Seattle Municipal Archives Judges as Proxies Standards for Decisions (Proxy) Judges as Proxies Photo Credit: Seattle Municipal Archives • Also for ordering treatment – against parents with decision-making capacity – ex. blood transfusion and religious beliefs – demonstrates state’s interest in protecting child’s well-being • What guide(s) do we have ? – Substituted Judgement – Best Interest PatientCentered Photo Credit: John Barrie 6 Substituted Judgement and Best Interest Standards for Decisions (Proxy) • Both widely understood and accepted in health care ethics • Both easily compatible with the ethics of right reason • Reasonable treatment PhysicianCentered Photo Credit: llmicrofono Ogglono Reasonable Treatment Substituted Judgement • Not so widely recognized • • • • Wishes of the patient prevails Proxy just reports the wishes of the patient Carries out the treatment plan How does the proxy know what the patient wants(ed) • Standard of Substituted Judgement Photo Credit: llmicrofono Ogglono Substituted Judgement (limited role) • Was told directly/written • Imply from comments • Patient never discussed relevant situation, however, revealed enough values and thinking (weak basis) Substituted Judgement • Substituted Judgement is sometimes used even for those who never had the decision-making capacity or • Those that never specified what they wanted 7 Substituted Judgement Substituted Judgement • How justified for withholding/withdrawing treatment? • 1. Judge claim that the patient would have decided to forego treatment if he could have decided to forego the treatment Substituted Judgement Substituted Judgement • 2.The law supports right of selfdetermination/privacy, right to refuse treatment • Even if patient is not able to assert them • Perhaps it might be better to not see every decision as a form of substituted judgment • Best interest might be legally relevant Best Interest Best Interest • Interest of the patient, what will benefit (net) the patient – All things considered • Is the treatment more of a burden than a benefit? – Ex. antibiotics for terminally ill patient Photo Credit: Sharada Prasad CS 8 Best Interest Best Interest • Best interest judgement • What will truly benefit the particular patient? Reasonable Standard • What if patient never gave any indication of desires ? • What if patient does not have any interest ? • Can be overridden – triage Reasonable Standard • When proxy cannot rely on first two standards: – 1) some permanently unconscious patient (decide to withdraw life sustaining treatment) Photo Credit: Peter Stevens Reasonable Standard • When proxy cannot rely on first two standards: – 2) some incapacitated dying patient kept on life support to preserve organs for transplantation (may decide to continue lifesustaining treatment) Photo Credit: Peter Stevens Reasonable Standard • Permanently unconscious – no longer have any interest – beyond benefit or burden – will never again feel anything Photo Credit: Peter Stevens 9 Reasonable Standard • Permanently unconscious – no longer have any interest • No cogent reason to treat • Many reasons not to treat PVS • Continued treatment no possible benefit • No burden to withdraw Reasonable Standard • Override the substituted judgement – PVS patient who had expressed desire to have heart surgery – Should proxy follow through on substituted judgement ? Photo Credit: Peter Stevens Reasonable Standard Photo Credit: Peter Stevens Continue • Incapacitated Organ donors • Baby’s life preserved for benefit of organ recipients • Not substituted judgement or best interest of baby • Ethical decision ? – No suffering – Shortage of baby organs Photo Credit: Tracy Sorensen 10

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