THE PROBLEM PATIENT PEARLS AND PERILS

1. THE PROBLEM PATIENT PEARLS AND PERILS

2. THEPROBLEMPATIENTPERILS AND PITFALLS NICK YATES, MD, BIOETHICS (MA) MARCH 17, 2008

3. P R O B L E M A-ttitudes T-ime I -nitiates E-xpectations N-uances T-rajectory

4. P R O B L E M -- Patient -- Family -- Doctor -- Staff -- Administration

5. PROBLEM WITH MANY FACES Family who wants to stop treatments where the professional team encourages them to keep trying. Family demands continued futile medical treatment that is causing the patient pain or distress. Family attempting to reach consensus while the patient is subjected to additional invasive procedures. Health care dollars and human resources are spent on non-beneficial treatment. Carol Taylor, CHA, 2007

6. WHY IS THE PROBLEM SUCH A PROBLEM ? Increased Technology (know more, do more) Changing Doctor-Patient Relationship (parent – partner – provider) Cost Containment managed care/dollars, incentives, credentialing Tales of Medical Horrors and Miracles Stories

7. LESSONS FROM THE PAST • Disability bias • Danger of the code • Misunderstanding the diagnosis • Transference (personal and individual) • Medical facts and ethical reflections • Avoidance of utility-futility disputes, and the appropriate application of goal-setting. Joseph J. Fins, January 2008

8. CLINICAL-ETHICAL REASONING Ethical Principles Rights Consequences Comparable Cases Professional Guidelines Conscientious Practice Kaldjian, J Gen Intern Med 2005; 20:306-311

9. PROBLEM CASE 1 79-year old African-American lady long-standing history of insulin-dependent diabetes peripheral vascular disease gangrenous lower extremities Patient refuses amputation -- HCP is appointed and DNR is in place -- Can we stop the antibiotics?

10. MEDICAL FUTILITY Consideration of the benefits, the burdens, and the efficacy of the treatment Pelligrino, JAMA v.283,n.8; 2007:1065-1067 ‘Physiologic’ not ‘Probabilistic’ (NYS DNR Law) “Unsuccessful in restoring cardio-pulmonary function…repeated arrests prior to death….” New York State, Public Health Law 2961(12)

11. CRITIQUE OF MEDICAL FUTILITY “There can only be agreement on…medical futility if all parties at the decision-making table share the same assumptions about what gives life value.” Sayeed, Journal of Law Medicine & Ethics, Fall 2006

12. CONFLICT RESOLUTION Good Communication Good Communication Good Communication

13. CONFLICT RESOLUTION Should Not Be In A Hurry Time-Limited Trials Medical Consultation Ethics Consultation Legal Discussion

14. PRINCIPLES OF DECISION-MAKING • Shared decision making -- physicians and their consultants -- patient, family and advisors • Establish the goals of therapy -- cure -- palliation -- care • Select a specific treatment plan

15. PROBLEM CASE 2 “Doctor -- If this was your (fill in the blank), what would you do?”

16. PROBLEM CASE 2 Why is the question being asked – -- unable to make a decision -- afraid to make a decision Should we answer the question – -- specifically -- contextually -- should we answer a different question Whose best interest – -- patient, family, physician

17. ETHICAL-SOCIAL DECISION MAKING “…what is in the best interest of the child is often debatable. There are times when good families and good physicians disagree about the appropriateness of continuing or stopping life-sustaining treatments.” Fine, Pediatrics, 116(5)November 2006

18. PROBLEM – NYS LAW “…statutes authorizing surrogate decision for incapable patients are the Health Care Proxy Law, the DNR Law and MHL Article 8l Guardians. But all of these statutes obligate the surrogate to make health care decisions in accordance with the patient’s wishes, if such wishes are known…” NYSBA Health Law Journal (2005) V.10, No.3, p. 77

19. PROBLEM CASE 3 AJD - Buffalo police lieutenant 2004 – esophageal cancer 2004 proxy appoints brother as agent, witnessed by wife 2005 – surgery to remove tumor & severe brain damage (Munschauer – “severe irreversible global brain injury”) 2005 hearing, wife appointed property guardian (MHL), and petitions court to remove brother as agent seeking person guardianship 2006 hearing, revokes agency & wife appointed guardian

20. BEDSIDE CONFLICT RESOLUTION Should the consultant be active or passive? Negotiation – Mediation – Arbitration – Orr, AJOB, vol 1, no 4, Fall 2001: 45-46

21. MEDIATION Neutral Transparent Maximize the agency of those involved Orient the conversation Allow emotion Allow time Montgomery County Mediation Center (Norristown, PA)

22. MEDIATION Must be based on dependable medical information: problem solving clinical judgment decision-making joint decision-making discussion but not undertaken silent decision-making Whitney & McCullough, AJOB, v7,n7,2007:33-38

23. PROBLEM CASE 4 28 year old primigravida Gestational age about 23 weeks Father – no ‘heroic steps’ if extremely premature Team – resuscitate if child is vigorous at birth

24. IT’S ALL ABOUT THE BABIES United States --- 2003 Data 4 million babies born annually 500,000 born prematurely (prior to 37th week of gestation) 560,000 admitted to NICU

25. IT’S ALL ABOUT THE BABIES • 560,000 babies in the NICU • ELBW (28 weeks; under 1000 grams) 20 % disability – CP, developmental, vision • Consider only – 23 weeks; 500 grams) 50 % disability --- 10 % - 20 % survival

26. NONINITIATION OR WITHDRAWAL Direct and open communication between the health care team and the parents. Inclusion of parents as active participants in the decision-making process Continuation of comfort care especially when intensive care is not being provided Decisions are guide by the child’s best interest. Committee on Fetus & Newborn (AAP) 2007

27. ---- WHOSE BEST INTERESTS ? -- the patient -- the family -- the patient’s doctor -- the patient’s hospital system -- the patient’s society

28. DECISION-MAKING FRAMEWORK Physician’s Assessment Beneficial – Uncertain – Futile Parents Accept treat treat treat Care ? Parents Forego treat forego forego Care (review) (President’s Commission, 1983)

29. CRITIQUE OF BEST INTEREST “Employing best interests to justify non-initiation of rescue…means accepting parents’ or physicians’…assessment of future value…of a seriously disabled life and accepting the moral motivations for disregarding such a compromised state of human existence.” Sayeed, Journal of Law Medicine & Ethics, Fall 2006

30. TEXAS ADVANCE DIRECTIVES ACT “… authorizes the withdrawal of life support if an ethics committee had determined that further life support was medically inappropriate and provided the hospital gave the family 10 days’ and attempted to transfer…” -- 2005

31. PROBLEM CASE 5 Allocation of Resources Issues -- two patients (being managed by the same physician) have medical needs that are equally demanding of intensive care -- ‘God Squad’ Issue -- one dialysis machine, many patients: how does one decide?

32. ALLOCATION OF RESOURCES Some of the questions -- • Should careproviders limit resources for one patient so as to be given to another? • Should careproviders ‘game the system’ for a patient needing care? - Should careproviders sacrifice their own needs in order to benefit a patient? Howe, JCE, v.18, n.3; 2007:195-205

33. PEARLS

34. SOLUTION “No set of inclusion/exclusion criteria are perfect, but unparalleled uncertainty about outcomes often prohibits a … rational … course of care … at the time of delivery…a degree of flexibility … and an honest assessment of our limited capabilities and society’s limited support … seems reasonable … and regardless of the law on the books.” Sayeed, ibid.

35. CONSIDERATIONS Helping families stay close Maximizing a family’s potential Establishing Feelings of Safety Validating Views Advance Directive Howe, JCE v.18,n.4; 2007:331-339