Are Clinical Ethics Committees Effective?

1. Are Clinical Ethics Committees Effective? Ronn Huff Director, HCA Center for Clinical Ethics Ethics Consultant Group, LLC

3. Primary Functions of Clinical Ethics Committees (CEC) • Over-emphasis on case consultation • Effectiveness of case consultations • Ideas for improvement Objectives

4. Ethics Committee Functions

5. Withholding or withdrawing treatment • Do Not Attempt Resuscitation orders (DNAR) • Identification of patient’s representative • Advance directives • Medical futility • Informed consent • Determining decision-making capacity • Palliative care issues • Conflict resolution • Perinatal & neonatal issues • Research protocol Common ethical issues

6. 106 out of 185 facilities responded  • 50% of ethics committees meet (regularly) four times yearly or less • 65% of CEC’s receive 6 or fewer consultation requests annually • High % of that number report 2 or less *37% of total CEC time spent on case consultation 2005 HCA survey of Clinical Ethics Committees

8. The average hospital ethics committee receives 3 requests for case consultation per year Fox et al (2007) survey of ethics consultation services

9. “…the fact that many Ethics Consultation Services have a very low level of consultation activity may be cause for concern. Is there sufficient activity to develop and maintain the competencies required for the ethics consultation?” • “If we reflect on how many ethically charged conflicts occur in hospitals each year, it is clear that there is a large, unmet need among patients and their families for help in navigating these conflicts: the ethics consultation system we have in place in the U.S. is not working”

10. Individuals performing ethics consultation • 54% female, 90% white • Physicians (34%), nurses (31%), social workers (11%), chaplains (10%), administrators (9%) Characteristics of CEC members

11. 5%: fellowship or graduate degree program in bioethics • 41%: direct supervision by an experienced member of the CEC • 45% learned independently • 28% of hospitals have a formal process for evaluating the effectiveness of ethics consultations Educations of CEC members

12. 82% of those surveyed had some prior experience with ethics consultation; • Nearly half expressed some hesitation over using ethics consultation Physicians main complaints? • Consults take too much time or make the situation worse • Consultants are unqualified Internists & Ethics Consultation

13. Recommendations? 1. Publicity (19% didn’t know consultation service was available in their hospitals) 2. Timeliness of consult 3. Adequate knowledge & training 4. Specific recommendations Internists & Ethics Consultation

14. Ethics Consultation Service Evaluation 476-bed teaching hospital near New York City • Questionnaire to clinicians associated with 20 cases referred to ethics consultation service • Was consult deemed “very helpful,” “somewhat helpful,” or “not at all helpful”? What are patients/families saying?

15. 96% of physicians considered ethics consults either “very helpful,” “somewhat helpful” • 95% of nurses considered ethics consults either “very helpful,” “somewhat helpful” • 65% of patient or family respondents considered deemed ethics consults either “very helpful” or “somewhat helpful What are patients/families saying?

16. Lack of involvement in decision making process • “We were not kept apprised of events.” • “I feel it (the ethics consultation) wasted precious time I could’ve spent with my dying husband” Primary patient/family complaints

17. “When medical outcome was experienced as unsatisfactory, patients/families rated ethics consultation as ‘unhelpful’… whether or not the consult team supported & advocated for the patient or family’s preferred course of action.” • Difficult outcome compounded by communication gaps Too little, too late?

18. CEC members employed by the hospital • Case reviews are multi-party events • CEC and clinical team are colleagues • Resolutions involve ‘best practice’ stds • Consults involve dying or critically ill pts • Primary stakeholder is often not a participant Uneven playing field for patients?

19. Qualitative analysis of 310 ethically difficult situations described by physicians who encountered them in their daily practice • “The avoidance of conflict, between any parties, emerged as a goal in its own right… often taking priority over other goals.” How physicians face ethical difficulties

20. If conflict avoidance is the goal, outside help is usually not required • “Conflict seems to be a trigger for ethics consultations, but ethics consultation appears to be the last resort rather than as a early or primary source of help in cases of ethical difficulty.” How physicians face ethical difficulties

21. Many physicians… • do not feel the need for outside assistance with ethically challenging cases • Seek assistance as a last resort • Patients and families do not appreciate CEC involvement as much as clinicians • Ethics consultation services are often ill-defined & poorly publicized • Effective ethics consultation requires a substantial time commitment Observations

22. Other ways of ‘doing’ ethics

23. "To see what is in front of one's nose needs a constant struggle." - George Orwell

24. Everyday conduct is of greater moral significance than how we respond to special situations calling for extraordinary moral conduct The heroic fallacy model

25. Study of 99 ICU patients with 4+ days of continuous mechanical ventilation • Will proactive ethics consultation result in better communication, more decisions to appropriately forego EOL treatments, and reduced length of ICU stays? • Baseline group: prior to hospital’s ECS) • Control group: ethics consultation optional; available on request • Proactive group: automatically triggered ethics consultation by two ethics-trained clinicians with the patient’s care team and patient and/or family) 1. Proactive ethics consultation

26. Is there an advance directive? In chart? • Patient capacity? If no, is proper surrogate identified? • Surrogate informed of diagnosis, prognosis, treatment options? • MD’s anticipate major obstacles to patient recovery? • If patient response to treatment is poor, any discussion held about withholding or withdrawing treatment? • Any unaddressed issues (patient preferences, pain management, consistent, clear communication)? Care team/family checklist

27. DNR Orders? • 32%...baseline group • 39%...control group • 61%...proactive group • For patients who died… …average LOS was 13 days shorter in the proactive group than in either of the other two groups • Proactive group also showed significantly lower use of other life-sustaining treatments Proactive ethics consultation

28. Preventative; coaching model; focused on quality of clinical communication vs. trouble-shooting model • Targeted to specific patients versus generalized education Why was this effective?

29. Physicians and nurses “express greater conviction that patients and surrogates should be kept informed and involved in decision-making and (can) be approached without stimulating defensiveness, fear, or loss of hope… • Also, discussion of ethical issues between nurses and physicians…appeared less defensive in tone; for example, the mere mention of ethical issues no longer implied wrongdoing.” Why was this effective?

30. (DNAR policy) The standard purpose of cardiopulmonary resuscitation (CPR) and other resuscitative measures is the prevention of sudden, unexpected death. 2. Policies as Educational Tools

31. Withholding/Withdrawal of Treatment policy • Patients have the right to refuse treatments, including life-sustaining treatments. Appropriate and compassionate medical care may in the judgment of the physician call for the withholding and withdrawing of certain life-prolonging treatments either inappropriate or harmful to a patient. 2. Policies as Educational Tools

32. A life-prolonging treatment is medically inappropriate when it provides no meaningful possibility of extended life or other benefit to the patient. • A life-prolonging treatment is medically harmful when the additional suffering or other harm inflicted on the patient is grossly disproportionate to any possibility of benefit. • Physicians may refuse to offer any treatment that is not medically indicated. Withholding/Withdrawal policy

33. Implanted cardiac devices: There is general consensus regarding the ethical and legal permissibility of deactivating implanted cardiac devices in terminally ill patients. These include pacemakers, implantable cardioverter-defibrillators ICD’s, and CRTdevices. • Given the clinical context, all three can be considered life-sustaining treatments and may be refused by a patient or patient representative, given that ethics and law make no distinction between withholding and withdrawing treatments. Withholding/Withdrawal policy

34. However… • …research to date indicates that clinicians involved in device management generally make a distinction between deactivating a pacemaker and deactivating an ICD or CRT device. • Thus, any request to deactivate an implanted cardiac device should precipitate a thorough discussion about the consequences and possible alternatives to device deactivation. ICD clause

35. Surrogacy identification process • Bedside capacity tools, protocol • Staff surveys • Retrospective consult reviews with staff • Open access to clinical ethics committee meetings (food, CEU’s, outside speakers) • Advance care planning training 3. Additional Ideas

37. Final observation Dr. Joanne Lynn (2004) Sick to Death and Not Going to Take it Anymore (2004)

38. “Continuity of the care plan and care team across time and sites is essential for patients who will be ill and/or disabled for the remainder of their lives. Yet physician and hospital care for those with eventually fatal chronic illness is mostly tied to episodes of acute worsening, and few professionals stay central to the care for the duration of patients’ lives… Business as Usual?

39. “Severely ill patients often see an array of specialists, typically in the office or hospital, though they may also receive many supportive services at home or in nursing facilities. Their doctors are usually only dimly aware of the non-medical services of the patients’ and families’ way of life.

40. “Patients may be referred from one physician to another, or transferred from one setting to another, without the benefit of a common understanding of their situation or even a common medical record accessible to each provider.

41. “An error in diagnosing an abscess would be criticized and addressed. But shortcomings that arise from lost advance care plans (precipitating a futile or unwanted attempt at resuscitation or an unnecessary transfer from nursing home to hospital)…are rarely seen as outrageous – or even as medical errors – but are accepted as simply part of how the work gets done.”

42. Discussion

43. Discussion For a copy of this PowerPoint presentation… huff@ethicsconsultantgroup.com

44. Christakis NA. Attitude and Self-reported Practice Regarding Prognostication in a National Sample of Internists. Arch Intern Med. 1998;158:2389-2395. • Fox E et al. Ethics Consultation in United States hospitals: A National Survey. The American Journal of Bioethics, 7(2): 13–25, 2007. • Elliott C. Better Than Well: American Medicine Meets the American Dream, W.W. Norton & Company, New York, London; 2003. • Hurst SA et al. How physicians face ethical difficulties: a qualitative analysis. J. Med. Ethics 2005;31;7-14 doi:10.1136/jme.2003.005835 • Jonsen AR et al. Clinical Ethics, 5th Edition: A Practical Approach to Ethical Decisions in Clinical Medicine, McGraw-Hill, 2002. • Lynn J. Sick to Death and Not Going to Take it Anymore: Reforming Health Care for the Last Years of Life, 2004. • O’Reilly KB. Willing but waiting: Hospital ethics committees, AMNews staff, Jan 28, 2008, amednews.com. • Schneider. CE. The Practice of Autonomy, Oxford University Press, 1998. • National Survey of U.S. Internists’ Experiences with Ethics Consultation. J Gen Intern Med 19(3): 251-258, 2004 • Report of 255 Clinical Ethics Consultations and Review of the Literature, Mayo Clinic Proc., June 2007;82(6):686-691. Bibliography