The Challenge of Bioethics in IDD Nursing

1. The Challenge of Bioethics in IDD Nursing NYS MR/DD Nurse�s Association October 5, 2010

2. OBJECTIVES ? Discuss bioethical IDD cases based on current accepted principles: Overview of bioethical principles Short history of ethics/bioethics and IDD Three case presentations: 1 - Ashley X: the family vs. the person 2 - Body Checks: privacy vs. safety 3 - MC: the individual vs. the group

3. OBJECTIVES Develop ability to utilize bioethical reasoning in practice: Nurses Role in Ethical Conflict Mediating acceptable outcomes Using ethical reasoning as a means of patient advocacy

4. Bioethics or Ethics? I will use �Ethics� somewhat fluidly. There is a difference between biomedical/clinical ethics and nursing ethics Nursing ethics are employed in making principled nursing decisions and in supporting and advocating for the patient. Understanding one�s nursing moral development.

5. Ethics-Bioethics Fixation Increased communication � TV, cable, internet Health Care Reform/political debate Sensationalism/drama ? ? ? ? ? Ethical �Landscape Shifting� Developing, evolving, fine tuning

6. Ethical Overview Basic ethical principles: Autonomy (Self-determination) Nonmaleficence (Do no intentional harm) Beneficence (Do good, prevent or remove harm) Justice (Be fair, equitable) Others (Utility, Veracity, PRIVACY-Confidentiality, Fidelity)

7. IDD Ethical History NAMES: Cretin ? Idiot ? Imbecile ? Moron ? Mongoloid ? Feeble Minded ? Retard ? Challenged ? Special ? Disabled ? Delayed ? What Next? 1895 � gonorrhea experiment in NY with �an idiot with chronic epilepsy� Nazi Atrocities�Nurnberg Code��protection against even remote possibilities of injury, disability or death� 1940�s Massachusetts, 1950�s California: radiation experiments, � cerebral palsy, continued Asylum Model - segregated detention- heavy tranquilization, abuse etc 1956 � 1970 Willowbrook, Hepatitis vaccine experiments, admission/state care was contingent upon participation in the study INFORMED CONSENT ALWAYS LACKING (first 1833 by Dr. William Beaumont)

8. Informed Consent = Autonomous Authorization Corner stone Evolving process Role of nurse Nurse may have conflicting responsibilities to the patient, the family, the agency, care-providing colleagues, society, and to the advancement of knowledge. Autonomy is primary

9. OPWDD on Informed Consent WHEN IS INFORMED CONSENT NECESSARY? 14 NYCRR 633.11 Procedures for obtaining informed consent Defined in Section 633.99 as follows: A medical, dental, surgical or diagnostic intervention or procedure in which a general anesthetic is used or which involves a significant invasion of bodily integrity requiring an incision or producing substantial pain, discomfort, debilitation or having a significant recovery period or any professional diagnosis or treatment to which informed consent is required by law. Informed consent is NOT required for medical treatment that does not meet the 633.99 definition ~ generally routine care or emergency treatment. http://www.omr.state.ny.us/wt/images/wt_publication_willowbrookinformedconsent.pdf

10. Recent Developments New York State Family Health Care Decisions Act, March 16, 2010 OPWDD ADM 2010-02, MIPS (Medical Immobilization - Protective Stabilization), September 15, 2010

11. Some Bioethical Subjects Today

13. Ethical Basics for Nurse�s Nursing as: profession, vocation, being Professional = Code of Ethics, standards of care, scope of practice Codes of Ethics ? influence behavior, inspire courage

14. Ethical Formation Oath: Nightingale, Hippocratic (Online handouts) AMA: guidelines restrict doctors from any role in execution, even pronouncing death. Helping carry out the death penalty violates a doctor's essential mission to preserve life ANA Code of Ethics (handout) JCAHO standards Institutional mission statements Regulations, policies, procedures

15. Ethical Formation The ICN Code for Nurses: Fundamental responsibility of the nurse is to promote health, prevent illness, to restore health and to alleviate suffering. To protect the legal and moral rights of patients

16. Ethical Participation IRB = Institutional Review Board Ethics Committees (impartial, without an agenda) Ethics Consultant and/or MEDIATOR Advanced training as a �Nurse Ethicist� Teaching ethical principles and reasoning to others Training, supervising, role modeling LPN�s, DSP�s, AMAP�s.

17. Ethical Decision Making Nursing Ethical Process Assess the conflict/dilemma/data Diagnose the situation clearly Plan choices/actions based on ethical principles, analyze advantages and disadvantages of each action Intervene, make ethical decision that resolves Evaluate the resolution

18. Ethical Decision Making: Current Policy What is your current policy or practice? On what principles is it based (autonomy, nonmaleficence, beneficence, justice)? Does it work?

19. Ethical Decision Making: What is the PROBLEM Is the problem that the current policy or practice does not actually support the principles on which it is based? Is the problem that we are not sure that the principles being upheld are the right ones? Are we concerned that we are upholding less important principles while sacrificing more important ones? Is there a conflict with nonmoral interests?

20. Ethical Decision Making: Respecting AUTONOMY What does respecting autonomy mean in relation to people with IDD? How do we determine in what circumstances a person has autonomy or should be supported in making autonomous decisions? In what circumstances and for what reasons should we make paternalistic decisions on behalf of people with IDD

21. So what are the challenges for us? Stay educated on emerging technologies and trends in bioethics as non-acute nurses Maintain optimal ethical decision making skills based on our experiences and learning Know the depth of our IDD nursing vocation and serving our population as professional ethical nurses.

22. Case 1 Ashley X The family vs. the person Ashley, age 10, photo copyright from �Ashley�s Blog,� the web site maintained by her parents at: http://ashleytreatment.spaces.live.com/blog

23. Ashley X Born 1997 with static encephalopathy (permanent brain damage) of unknown etiology Breathes on her own but unable to raise head up, sit up, hold and object, walk, talk, must be tube fed 2003 Signs of puberty 2004 received �Ashley Treatment�

24. The �Ashley Treatment� High doses of estrogen to halt growth Hysterectomy (ovaries were left intact) Breast bud removal

26. Reasons why Ashley�s parents wanted the interventions: Hormone therapy to keep her body small Make it easier for caregivers to move her and provide care This helps her to be part of family activities This helps keep her stimulated Movement improves blood circulation, GI functioning, stretching and joint motion Will fit in bathtub as an adult Will decrease chance of bedsores Will decrease chance of pneumonia and bladder infections

27. Reasons why Ashley�s parents wanted the interventions: Breast bud removal Given the women in Ashley�s family, her breasts were likely to be large Large breasts might be uncomfortable in wheelchair straps Large breasts might make Ashley more sexually attractive and increase the chance of sexual abuse There is a history of fibrocystic growth and breast cancer in Ashley�s family She does not need breasts because she will not be breastfeeding an infant

28. Reasons why Ashley�s parents wanted the interventions: Hysterectomy Avoid menstruation and menstrual discomfort Avoid pregnancy if Ashley is ever raped Ashley does not need her uterus as she will not be bearing children

29. Ethical Counter-arguments Hormone therapy to keep her body small Make it easier for caregivers to move her and provide care Will fit in bathtub as an adult Will decrease chance of bedsores Will decrease chance of pneumonia and bladder infections Equipment makes lifting possible

30. Ethical Counter-arguments Hormone therapy to keep her body small Make it easier for caregivers to move her and provide care Will fit in bathtub as an adult Will decrease chance of bedsores Will decrease chance of pneumonia and bladder infections Equipment makes lifting possible Large adults fit in a standard bathtub

31. Ethical Counter-arguments Hormone therapy to keep her body small Make it easier for caregivers to move her and provide care Will fit in bathtub as an adult Will decrease chance of bedsores Will decrease chance of pneumonia and bladder infections Equipment makes lifting possible Large adults fit in a standard bathtub Frequent turning prevents bedsores

32. Ethical Counter-arguments Hormone therapy to keep her body small Make it easier for caregivers to move her and provide care Will fit in bathtub as an adult Will decrease chance of bedsores Will decrease chance of pneumonia and bladder infections Equipment makes lifting possible Large adults fit in a standard bathtub Frequent turning prevents bedsores Tilt wheelchair and frequent position changes helps prevent pneumonia

33. Ethical Counter-arguments Breast bud removal Given the women in Ashley�s family, her breasts were likely to be large Large breasts might be uncomfortable in wheelchair straps Large breasts might make Ashley more sexually attractive and increase the chance of sexual abuse There is a history of fibrocystic growth and breast cancer in Ashley�s family She does not need breasts because she will not be breastfeeding an infant There are a variety of straps to meet this need

34. Ethical Counter-arguments Breast bud removal Given the women in Ashley�s family, her breasts were likely to be large Large breasts might be uncomfortable in wheelchair straps Large breasts might make Ashley more sexually attractive and increase the chance of sexual abuse There is a history of fibrocystic growth and breast cancer in Ashley�s family She does not need breasts because she will not be breastfeeding an infant There are a variety of straps to meet this need You should not perform surgery on a child to prevent the possibility of a future illness after the child has become an adult

35. Ethical Counter-arguments Hysterectomy Avoid menstruation and menstrual discomfort Avoid pregnancy if Ashley is ever raped Ashley does not need her uterus as she will not be bearing children Ashley uses a diaper, so menstrual fluid is not a problem Not all women have discomfort, and if she does, give her a pain-reliever

36. Ethical Counter-arguments Hysterectomy Avoid menstruation and menstrual discomfort Avoid pregnancy if Ashley is ever raped Ashley does not need her uterus as she will not be bearing children Ashley uses a diaper, so menstrual fluid is not a problem Not all women have discomfort, and if she does, give her a pain-reliever Provide her with contraceptive medication

37. Furthermore: Ashley�s doctors had hoped that a benefit of the interventions would be that Ashley would not develop scoliosis. Unfortunately, the interventions did not prevent scoliosis from developing.

38. Human dignity neither requires nor presupposes autonomy The least dangerous assumption: the importance of presuming competence

39. Dignity Claims Disability rights advocates claim that Ashley�s dignity has been violated. Peter Singer advocating the procedures claimed that �an individual with the mind of a 3-month-old lacks dignity�. Ashley�s parents claim that maintaining a childlike appearance to match her �childlike� mind will preserve Ashley�s dignity.

40. Ethical Argument To make a permanent alteration to a person�s body without her consent�when it is not medically necessary to save her life or to prevent her present and clear suffering�demonstrates that we do not value her for who she is. To fail to value someone is to deny her dignity.

41. What is the basis of our dignity? The basis of the dignity of human beings is that they have been born into the human family. Autonomy does not make one human Autonomy does not give someone dignity

42. Part of respecting others� dignity is to take them seriously as who they are. Teenagers with developmental anomalies are still teenagers, and adults with developmental anomalies are still adults.

43. Assume Competence In cases like Ashley X�s, the least dangerous assumption is to assume intellectual competence. It is impossible to judge the intellectual skills of someone who lacks a usable and adequately sophisticated means of communication.

44. Altering the body of a person with a developmental disability compromises her dignity in an additional way. These interventions would never have been performed on a �normal� child; that they were performed on Ashley represents a double standard.

45. The logic of respect is one of objectivity and universality. If impending adulthood is worth respecting in some children, such that caretakers of children see it as a crucial, primary goal to prepare children for and facilitate their entry into adulthood, it is worth respecting in all children. To treat Ashley differently because she is disabled is to value her less than a typical child, which is yet another way in which her dignity has been compromised.

46. Seattle Children�s Hospital Ethics Committee ��the consensus of the Committee members was that the long term potential benefit to Ashley herself outweighed the risks; and that the procedures/interventions would improve her quality of life, facilitate home care, and avoid institutionalization in the foreseeable future�

47. Disability Rights Washington settlement with Seattle Children�s Hospital No sterilizations of people with a developmental disabilities without a valid court order (except in a medical emergency). No growth attenuations, including breast bud removal and high dosage hormone therapy, for people with IDD without court approval. In the event of court approval, these interventions must still be reviewed by the hospital�s ethics committee. The ethics committee will have at least one member who is an expert on and an advocate for the rights of persons with disabilities. This member will be chosen in consultation with Disability Rights Washington.

48. The other story from a �Pillow Angel� Anne McDonald, an Australian woman, was also born with �static encephalopathy,� like Ashley. Like Ashley, McDonald has the motor capabilities of a three-month-old.

49. When she was three-years-old, a doctor assessed her as severely retarded. She was placed in an institution. They did not provide a wheelchair, so she lay in bed for the next 14 years. At twelve, she was assessed as profoundly retarded because she could still not walk or talk.

50. McDonald experienced growth attenuation because she was starved at the institution: each staff member had 10 children with severe disabilities to feed in an hour. At 18, she weighed 35 pounds, was 42 inches tall, had no breasts, and had not begun menstruating.

51. At 16, McDonald was provided with a means of communication, pointing at letters on an alphabet board. Two years later, she sued the state and left the institution. In their arguments to the Supreme Court, her doctors claimed her small size was evidence of her profound mental retardation.

52. With adequate nutrition, McDonald grew to five feet and a weight of 120 lbs. Along the way, she lost her baby teeth, developed breasts, and began menstruating. Discussing the Ashley case, McDonald says: �I may be the only person on Earth who can say �Been there. Done that. Didn�t like it. Preferred to grow.�� �Given that Ashley�s surgery is irreversible�I hope she does not understand what has happened to her; but I�m afraid she probably does. As one who knows what it�s like to be infantilized because I was the size of a 4-year-old at age 18, I don�t recommend it.�

53. At the age of 19, McDonald began attending school for the first time. She eventually graduated from college with a double-major in philosophy of science and fine arts.

54. �No child should be presumed to be profoundly retarded because she can�t talk. All children who can�t talk should be given access to communication therapy before any judgments are made about their intelligence� �Anne McDonald Anne maintains her own blog

55. Ashleys parents call her their �pillow angel� because she is so sweet and stays on the pillow where they lay her. The reasoning expressed by Ashley�s parents in their blog suggest that who they love is their �pillow angel,� not Ashley X, a person with dignity. We must recognize and respect the dignity of people like Ashley X so that as a society we do not aid and abet the misguided love that fails to appreciate them for who they really are.

56. One does not discover new lands without consenting to lose sight of the shore for a very long time Andre Gide

57. Embrace your nursing ethics and follow your gut. If you think something is unethical, it probably is:ADVOCATE MEDIATE NURSE

58. Resources from this presentation are NOW on the NYS MR/DD NA Website ANA Code of Ethics Nightingale-Hippocratic Oaths �Why we must ration healthcare� by Peters Singer Ethical Chart Note for MC Individual Body Check PLAN Body Check form Online Bioethical Resources (other links)

59. Selected Bibliography Principles of Biomedical Ethics, Beauchamp & Childress, 2001 Ethics in Nursing Practice: a guide to ethical decision making, Fry, 2002 Roles of the Registered Professional Nurse in Ethical Decision Making, NYSNA Position Statement, 2005 ANA: Code of Ethics for Nurses

60. With gratitude to: Anna Stubblefield, PhD, Associate Professor and Chair of Philosophy, Rutgers University, Newark, N.J. Nancy Neveloff Dubler, LLB, Professor of Bioethics and Director of the Division of Bioethics, Department of Epidemiology and Social Medicine, Montefiore Medical Center, Bronx, N.Y. AHRC-NYC Bioethics Committee