INTRODUCTION TO PEDIATRIC BIOETHICS IN PALLIATIVE CARE

Transcription

1 George Delgado, M.D., F.A.A.F.P. Regional Medical Director, The Elizabeth Hospice Medical Director, Pediatric Program Voluntary Associate Clinical Professor, Department of Family and Preventive Medicine, School of Medicine, UCSD

2 INTRODUCTION TO PEDIATRIC BIOETHICS IN HOSPICE AND PALLIATIVE CARE

3 What is in a name? What makes us human?

4 HOMO SAPIENS SAPIENS Homo: human Sapiens: wise or knows Wise Human or Human Who Knows He Knows (Self-Awareness)

5 WHAT MAKES US HUMAN? Selflessness

6 WHAT MAKES US HUMAN? The species can be distinguished from others by: Self awareness Intellect Free will Seeking meaning of life Seeking God

7 MORALITY AND ETHICS Morality: what is right and wrong or good and evil Ethics: the systematic and scientific study of morality Ethics: sometimes called moral philosophy

8 BIOETHICS Applied ethics dealing with medical and life science issues Earlier terminology included medical ethics and biomedical ethics. Bioethics more appropriate since some issues involve biological research

9 BIOETHICS HAS VARIOUS FLAVORS Classical Aristotelian Ethics Utilitarian Ethics Relativistic Ethics

10 CLASSICAL ARISTOTELIAN ETHICS Roots in thinking of Socrates and Plato Aristotle devised and perfected the analytical approach. Thomas Aquinas expanded it to be the foundation of Western ethics. Based on principles and reason.

11 MORAL ACTS *A morally good act contributes to the perfection of a person; that is, the act is keeping with the person s human nature.

12 MORAL ACTS *A morally evil act lessens the perfection of a person; that is, the act is not keeping with the person s human nature.

13 COMPONENTS OF MORAL ACTS Moral object: the act itself, what is actually done Intention: what I desire as a final outcome Circumstances: details surrounding the act

14 DECISIONS,, DECISIONS After morality of act(s) is determined, weigh the benefits vs. the burdens.

15 DANGER: : MORAL RELATIVISM Burdens Benefits

16 MORAL PRINCIPLES Justice

17 MORAL PRINCIPLES Justice: what is due the other

18 MORAL PRINCIPLES Justice: what is due the other Nonmaleficence

19 MORAL PRINCIPLES Justice: what is due the other Nonmaleficence: avoid doing evil to the other (The Silver Rule)

20 MORAL PRINCIPLES Justice: what is due the other Nonmaleficence: avoid doing evil to the other (The Silver Rule) Beneficence

21 BENEFICENCE: : THE CROWN JEWEL Beneficence: doing what is best for the other (agape, caritas, charity, the Golden Rule)

22 MORAL PRINCIPLES Justice: what is due the other Nonmaleficence: avoid doing evil to the other (The Silver Rule) Beneficence: doing what is best for the other (agape, caritas, charity, the Golden Rule) Autonomy

23 MORAL PRINCIPLES Justice: what is due the other Nonmaleficence: avoid doing evil to the other (The Silver Rule) Beneficence: doing what is best for the other (agape, caritas, charity, the Golden Rule) Autonomy: self-direction by the other

24 MORAL PRINCIPLES Justice: what is due the other Nonmaleficence: avoid doing evil to the other (The Silver Rule) Beneficence: doing what is best for the other (agape, caritas, charity, the Golden Rule) Autonomy: self-direction by the other Professional integrity and autonomy

25 MORAL PRINCIPLES Justice: what is due the other Nonmaleficence: avoid doing evil to the other (The Silver Rule) Beneficence: doing what is best for the other (agape, caritas, charity, the Golden Rule) Autonomy: self-direction by the other Professional integrity and autonomy: the professional is not a technical slave.

26 A Autonom y Current Ethics

27 PROCESS OF MORAL DECISION MAKING 1) Deliberation (by the intellect) 2) Judgment (by the intellect) 3) Choice to act (is willed)

28 THE PRINCIPLE OF DOUBLE EFFECT A way to evaluate the morality of an action that has two effects

29 THE PRINCIPLE OF DOUBLE EFFECT 1) Act itself must be good or indifferent. 2) Good effect must come from the act not from the bad effect. 3) The agent must not desire the bad effect, although he or she foresees it. 4) There must be a proportionately grave reason for permitting the evil effect. The bad effect must not be of greater magnitude than the good effect. There must be no better way to act in the index situation.

30 PRINCIPLE OF DOUBLE EFFECT Non-Evil Action Good Effect Evil Effect

31 PRINCIPLE OF DOUBLE EFFECT MISAPPLIED Non-Evil Action Evil Effect Good Effect

32 COOPERATION WITH EVIL When a person s action or inaction contributes to or facilitates evil

33 FORMAL COOPERATION WITH EVIL When the person desires the evil which he or she facilitates The person is in agreement with the evil

34 MATERIAL COOPERATION WITH EVIL The person does not agree with or desire the evil Immediate material cooperation means the person s action is essential to the evil. Mediate material cooperation means the action is not essential.

35 EXAMPLE OF FORMAL COOPERATION A person wants to euthanize his sick child. A physician provides the necessary amount of drug and agrees with the plan.

36 Example of Immediate Material Cooperation A person wishes to euthanize his child. A physician prescribes the abnormally large dosage of drug knowing what the parent will do but not agreeing with him.

37 Example of Mediate Material Cooperation A physician has a euthanasia clinic. The janitor at the clinic is aware of the euthanasia but does not agree with it.

38 COOPERATION WITH EVIL Formal cooperation is always considered morally wrong. Immediate material cooperation is always considered morally wrong. Mediate material cooperation can be justifiable, depending on the circumstances. In evaluating mediate material cooperation, one can asses the proximity and remoteness to the evil action.

39 FOUR BOX BIOETHICS Albert Jonsen, Ph.D. Mark Siegler, M.D. William Winslade, Ph.D., J.D.

40 FACILITATING ETHICAL AND LEGAL PRACTICE The 4 Box Method Medical Indications Patient Preferences Quality of Life Contextual Features Jonsen et al., 2006

41 FOUR BOX BIOETHICS *Medical Indications (object and circumstances), *Patient Preferences (autonomy), *Contextual Features (circumstances), *Quality of Life (circumstances and intentions)

42 MEDICAL INDICATIONS Indications for and against the intervention Reflect the goals of care Common ethical dilemmas

43 AUTHORITY OF PARENTS Children are deemed legally capable of consent at age 18 Challenge of determining relevance and weight of parental and patient preferences Jonsen et al., 2006

44 QUALITY OF LIFE (QOL) Evaluation of prior QOL Expected QOL with and without treatment (This delta is the consideration.) Common ethical dilemmas addressing QOL Jonsen et al., 2006

45 CONTEXTUAL FEATURES Social, legal, economic and institutional circumstances Common ethical dilemmas Jonsen et al., 2002

46 SETTING GOALS OF TREATMENT Autonomy (Patient and Family Preferences) Beneficence Nonmaleficence Justice Professional Autonomy

47 ADVANCE CARE PLANNING Process of decision-making and communicating about goals of care Nurses (and others ) role in assessing and interpreting wishes for care POLST Hinds et al., 2010

48 ADVANCE CARE PLANNING (CONT.) Decreases chance of conflict An ongoing, dynamic process Cultural, ethnic and age related differences

49 ADVANCE CARE PLANNING (CONT.) Advance Directives Written method for patient and family to plan and communicate choices Less common in pediatrics State statutes differ Pitfalls of POLST and other documents

50 CHOICES EMPOWER

51 Choices Enhance Sense of Control.

52 GOAL OF HOSPICE The goal of hospice is to relieve symptoms without hastening death and without prolonging the process of dying.

53 CONSENT TO TREATMENT *A function of autonomy and non-maleficence *A fundamental step in modern medicine and nursing including hospice and palliative care * Family members or designated agents may give consent when patients are unable to do so. *Parents, adult children or guardians are the agents of consent for minors and adults who cannot give consent. *Adults lacking capacity and children should give their assent, ideally.

54 THREE ESSENTIAL COMPONENTS OF INFORMED CONSENT The consent is given in the absence of coercion or duress.

55 THREE ESSENTIAL COMPONENTS OF INFORMED CONSENT The patient or family is provided with all the information (in language understandable to him or her) relevant to making a meaningful decision.

56 THREE ESSENTIAL COMPONENTS OF INFORMED CONSENT The patient or family has a level of decision-making capacity needed to make a meaningful choice.

57 CONSENT TO TREATMENT con sent (from Dictionary.com) verb (used without object)\ 1. to permit, approve, or agree; comply or yield (often follow ed by to or an infinitive): He consented to the proposal. We asked her permission, and she consented. 2. Archaic. to agree in sentiment, opinion, etc.; be in harmony. noun. 3. permission, approval, or agreement; compliance; acquiesce nce: He gave his consent to the marriage.

58 ASSENT TO TREATMENT as sent verb (used without object) 1)to agree or concur; subscribe to (often followed by to ): to assent to a statement. 2)to give in; yield; concede: Assenting to his demands, I did as I w as told.noun 3)agreement, as to a proposal; concurrence. 4)acquiescence; compliance.

59 Assent CASE DISCUSSIONS is like a

60 HOSPICE ROLE IN ADDRESSING ETHICAL ISSUES Promoting family-centered care Respecting preferences Role models of clinical proficiency, integrity and compassion Balancing competing objectives Providing ethically sound treatment plans and choices

61 ISSUES OF DECISION-MAKING AND COMMUNICATION Capacity: medically determined Competence: legally determined Consent Assent Confidentiality

62 ETHICAL ISSUES IN PALLIATIVE CARE Prolongation of life is not a bad thing. Curative intent vs. symptom control Acute therapeutic care superimposed Life sustaining treatments (LST) may overlap with symptom controlling treatments. Jonsen et al., 2006; Prince-Paul & Daly, 2010

63 ETHICAL ISSUES IN PALLIATIVE CARE (CONT.).) Withholding/withdrawing of medical interventions Balancing benefits and burdens Withdrawal of treatment is not withdrawal of care

64 ETHICAL ISSUES IN PALLIATIVE CARE (CONT.).) Do Not Resuscitation (DNR) Allow Natural Death (AND) Medical Futility

65 ISSUES OF JUSTICE IN PALLIATIVE CARE Provision of quality palliative care Costs of palliative care

66 ORGANIZATIONAL ETHICS PRACTICES Organizational ethics THICS & L & LEGAL Ethics committees and consultation Education Policy development Case consultation

67 CONCLUSION Engage in a process of ethical discernment Apply principles of ethics Use ethical process to seek balance in decisionmaking Advocate for patients and families