Ethical Challenges in End of Life Care for the Elderly

1. Ethical Challenges in End of Life Care for the Elderly David A. Fleming, M.D., MA, FACP Professor of Medicine Chairman, Department of Medicine Director, MU Center for Health Ethics University of Missouri School of Medicine 573-882-2738 flemingd@health.missouri.edu http//:www.ethics.missouri.edu

2. Conflict of Interest Disclosure I have no significant financial relationships with commercial entities producing healthcare-related products and/or services.

3. Overview • Observations about death • EOL decisions in the elderly • Long term care • HCD and CPR • Challenges of Futility • Cases • Dealing with Conflict

4. General Observations • Difficulty accepting death at any age • Difficulty defining futility • Application is patient specific • Applies to both acute and chronic conditions • May be over or under utilized • Quality of life arguments play a dubious role • Age and economics often come into play • Fluid process – decisions may change • Hope and fear of abandonment at the EOL • Patients/families often change their mind • Often not much time to decide • Team/family members may disagree

5. Hope, Expectation, Communication • Scientific promise to “save and improve” life • Faith (“the choice is not ours to make”) • Professional training (“death = enemy”) • Medical marketing (“staff for life”) • Theatre (code blue = resuscitation) • Family demands (guilt and fear) • Legal threat • Therapeutic “benefit” of futile care? • Professional score cards (P4P) • How Dx and Px are communicated • Changing relationships (Doc for the day)

6. Conflict may result… …due to lack of clarity …due to moral discomfort …due to fear of reprisal—professional, legal The risk: Delay in actions may prematurely lead to death or Unwanted or harmful treatment may be given

7. U.S. Paternalism v Autonomy:the Ethical and Legal Climate • Provider v Patient before 1970 • Generally recognized role of providers to act unilaterally for the patient (paternalism model) • Patient and family followed “orders” • Limited treatment choices • Patients usually died at home • Patient v Provider today • Courts generally do not recognize the right to act unilaterally unless it’s an emergency • Courts generally protect the patient’s right to choose or refuse treatment

8. I’m afraid there’s very little I can do When is enough enough? I’m afraid there’s really very little I can do…

10. How Does the Current U.S. Health Care System Do in Caring for Dying People? Excellent 3% Very Good 8% Good 24% Only Fair 33% Poor 26% Could not answer 7% National survey of 1,002 adults conducted by Lake-Snell-Perry Associates for Last Acts, 2002

11. Integration of Palliative and Disease-oriented Treatment in the Trajectory of Death Symptom-oriented Patient-focused Treatment Hospice Bereavement X Disease-oriented Treatment Diagnosis Death Abrahm, J. Update in Palliative Medicine and End of Life Care Ann. Rev. Med. 2003;54:53-72

12. Joanne Lynn, M.D. Rand Corporation Trajectory of Death “Death is not an instantaneous, momentary phenomenon, but a very protracted process.” Frederick Engels, 1880

13. Prognosis • 20% accurate within 33% survival time • 63% overoptimistic • 17% underestimated • Accuracy decreased as the duration of Dr-Pt relationship increased Christakis N and Lamont E. BMJ. 2000;320:469-472

14. Where Death Occurs • 60% of deaths occur in a hospital. • Most with chronic conditions • 74% of these occur after decisions to forgo life sustaining treatment. Block, JAMA. 2001 • 85% of patients with cancer admitted to an ICU die there. Dowdy, Crit Care Med. 1998

15. Long Term Care • 43% of persons >65 in 1990 entered LTC at some point; 55% stayed at least 1 year; 21% stayed 5 years or longer • 20% of U.S. deaths occur in LTC • In 1990 > 1.5 Mil (of 280 Mil) Americans lived in nursing homes; by 2030 this will increase to 5 Million Kemper P, Murtaugh CM. Lifetime use of nursing home care. NEJM. 1991; 324:595-600 Ersek M and Wilson S. The Challenges and Opportunities in Providing End-of-Life Care in Nursing Homes J Pal Med. 2003, Vol. 6, No. 1: 45-57 Zedlewski SR, Barnes RO, Burt MK, McBride TD, Meyer J. The Needs of the Elderly in the 21st Century. Washington, DC: The Urban Institute; 1989. Doty PJ. The oldest old and the use of institutional long-term care from an international perspective. In: Suzman R, Willis DP, Manton KG, eds. The Oldest Old. New York: Oxford University Press; 1992:251-67.

16. Changing demographics • By 2030 • 20% population > 65 • population > 65 will double (3060 Mil) • population > 85 will double (36 Mil) • Life expectancy: at 65 = 10 years at 85 = 5 years • 40% of community dwelling people > 85 have dementia Ouslander J, Osterweil D, Morley J. Medical Care in the Nursing Home. McGraw-Hill.1997.

17. Ethical Issues Unique to Long Term Care • Control and choice (autonomy) • Loss of functional impairment and increasing dependency • Loss of decision making capacity • Limited access to services and specialists • Psychosocial • Social and spiritual isolation • Limited availability of family • Depression (major 12%-25%, minor 18%-30%) • Loss of privacy • End of life • High rates of untreated pain and other symptoms • Current quality standards and reimbursement incentivize restorative care and technologically intensive treatments rather than labor-intensive palliative care. Only 13% of hospice pt. in LTC • Futility, WH/WD … re-hospitalize? • Substituted judgment … who decides? Rovner BW, German PS, Brant LJ et al. Depression and mortality in nursing homes. JAMA 1991;265:993–996 Zerzan J , Stearns S, Hanson L. Access to Palliative Care and Hospice in Nursing Homes JAMA. 2000;284:2489-2494

18. Health Care Directives“The Failure of the Living Will” • 18% have them (35% of dialysis patients) • “They don’t alter treatment” (SUPPORT) • Failure of the PSDA • Elderly tend not to execute one or defer to others • Most overestimate effectiveness of CPR • People don’t really know what they want • Will to live highly unstable when near death • Surrogates often don’t reflect accurately Fagerlin, Hastings Ctr Report. 2004;34(2):30-41

19. CPR Survival rate on television = 66% Actual in-hospital survival rates: -All hospital patients 15%-18% -Frail elderly <5% -Pt. with advanced chronic illness <1%

20. [12% survived CPR] deVoss, R et al. Quality of Survival After Cardiopulmonary Resuscitation. Arch Intern Med. 1999;159:249-254

21. CPR Success Survived CodeSurvived to D/C Witnessed In Hosp. 48% 22% Un-witnessed In Hosp. 21% 1% Bystander 40% 6% Ambulance CPR 15% 2% Defib. w/in 5 Min 74% 30% Source: Wikepedia

22. Success of CPR in the Elderly • Unchanged in over 30 years • 15% of 2994 patients survived to D/C • < 70 years = 16.2% • > 70 years = 12.4% • Community hospitals had a higher CPR success rate than teaching hospitals (18.5% versus 13.6%). Schneider A and Nelson D. In-hospital cardiopulmonary resuscitation: a 30-year review. J Am Board Fam Prac. 1993;6(2):91-101

23. Choice of CPR in the elderly How it’s presented: • 12% if phrased negatively • 18% if phrased in HCD already in use • 30% if phrased positively • 75% changed their mind at least once when presented differently Fagerlin, 2004

24. Knowing Prognosis • 287 patients 60 years of age or older; mean age 77 years range, 60 to 99. • When asked about their wishes if they had cardiac arrest during an acute illness: • 41% opted for CPR before learning the probability of survival to discharge • After learning the probability of survival (10 to 17%) 22% opted for CPR • 6% of patients 86 years of age or older opted for CPR knowing the prognosis • When asked about a chronic illness in which the life expectancy was less than a year: • 11% opted for CPR before learning the probability of survival to discharge • After learning the probability of survival (0 to 5%) 5% still said they would want CPR Murphy D et al. NEJM. 1994 ;330(8) 330:545-549

25. Barriers to DNAR and other Tx limitations • Attitude • Unwillingness to accept death—hope by providers as well as patients/families • Paradoxical desire to avoid undue harm and suffering • Recognize and respect patient preferences • Lack of Knowledge [SUPPORT. JAMA 1995; 274(20):1592-8] • Prognosis of both acute and chronic underlying illness • Patient preferences: HCD, DPOA, verbal comments • Poor Communication • Unclear and ineffective, with both patient and family • Timeliness – discussions not early and or often enough • Within the team and between teams • Unclear identification of patients with a DNAR order

26. The Challenges of Futility • Frequent lack of clarity • Moral discomfort • Fear of reprisal • The risk: • Delay actions that might lead to death… or • Withdraw or withhold prematurely…

27. Futility • Can it be defined? • Who defines it? • Once determined is it irrefutable? • Does this concept even pertain anymore?

28. Medical Futility • Futilis-e(Oxford Latin Dictionary) • of vessels: fragile • of things: vain, pointless • of persons: ineffective (Desired or intended outcome highly unlikely)

29. Futility • Oldest criterion in traditional medicine • Hippocrates: Treatise on Medicine (ca 400 BC) • Unrecognized in modern medicine before 1987 • 134 articles in 1995 • 31 articles in 1999 • The struggle • Defining it… • Autonomy of patients v autonomy of doctors • Dispute resolution • No agreement about underlying principles by medical community

30. FUTILITY Proportionality Relationship: FEffectiveness + Benefits Burdens (Not a mathematical equation) Physiciandetermines “Effectiveness”: A measurable changes in natural history of disease or symptoms can be reasonably expected. (…reasonable medical certainty of intended outcome) Patient and Physician determine “Benefit” together Patient determines “Burden”: cost of treatment

31. Futility • Proportional assessment (effectiveness, benefit, burden) • Made by the providers (team) the patient, the family, and others • Fluid calculus toward a defined goal • Accounts for new and changing variables • Goal = “good” of the patient

32. When does the obligation to treat no longer exist? Obligation to treat Effective Ineffective There are legitimate moral limits to what physicians “must do”… physician autonomy. Burden Benefit

33. “Futility” in the Elderly • The Challenge: Is aggressivedisease treatment morally justified in old people near the end of life? • Palliative vs. therapeutic • Some treatments may be compatible with “allowing for a more comfortable death” • Futility may pertain to an underlying disease but not the acute condition • Treatment Goals: Consider treatment that is reasonably “effective”, “beneficial”, and not unduly “burdensome” short of CPR or other life sustaining interventions…as with anyone else

34. Economics as a Criterion Morally valid if by the patient The competent patient The incompetent patient Valid anticipatory declaration (HCD) Morally valid surrogate Morally invalid if by anyone else not primarily representing the patient Incompetent patients without valid surrogate Social criterion: Morally variable (fairness of rationing) Policy decision

35. Age as Criterion Chronology vs. Physiology Chronology vs. Effectiveness of Treatment Relevant as it pertains to impacting the prognosis of underlying and acute conditions. Danger of Ageism (discrimination) young/old value conflicts economic and fiscal pressures What is a “normal” lifespan?

36. The Principle of Double Effect Action itself must be “good” The agent must intend a good effect The “bad” effect is foreseen, not intended The good and bad effects must follow immediately from the same action Proportionality between the two should favor the “good” effect

37. …in other words One act, two effects One effect is good, the other bad One intends to do good The unintended bad effect is not the cause of the intended good All things considered, the good that results far outweighs the bad that is likely to occur

38. Cases

39. 82yo man in NH with dementia, mild CHF and Cr=2.2 now with pneumonia; DPOA suggests he would not want “aggressive treatment” should he deteriorate. • Best options? • Offer DNAR • Offer LOT—consider withholding elective intubation, dialysis, artificial hydration and nutrition, and perhaps antibiotics. • Reasons: patient preferences per HCD and DPOA; futility

40. 75yo man in NH following a CVA has pneumonia and is willing to accept a feeding tube and perhaps short term vent support if there is hope of recovery but does not want CPR. This is consistent with his HCD; speech deficit but has capacity and is capable of communicating. • Best options? • Offer DNAR • No LOT order—if feeding tubes or vent support are required they can be withdrawn • Reasons: patient preference, HCD, futility

41. 65yo female with PVS, recurrent aspiration pneumonia, renal failure, sepsis, and SBE is deteriorating. The family insists that CPR be attempted and refuses to allow LOT or DNAR. • Best options? • Continue communication efforts with the family to garner trust . • Take DNAR and LOT off the table to relieve the situation and assure nonabandonment. • Do what is medically indicated, including CPR, but assure the family that resuscitation efforts will not go on ad infinitum in the face of medical futility

42. Reaching Compromise • Legal (tort) risk: the medical legal environment has historically favored the patient, with one exception: • Gilgunn vs. Mass General Hospital, 1995 • Prognosis (futility) is the most important variable (0-15%) • Compassionate communication is the most important intervention • Recognize the importance of hope and trust, and the fear of abandonment— ? therapeutic “benefit” to futile care… • Limiting treatment never precludes good CARE • It is reasonable to attempt resuscitation, even in the face of a poor prognosis if so desired, but it is not obligatory to continue beyond reason. • Don’t let the DNAR debate become a barrier to effective and compassionate care of the patient and their family

43. A Practical ApproachPatient/Surrogate/Family Together with Physician Define “futility” Together Exchange values and beliefs Set medical and non-medical goals Set Time Limits (re-evaluate) Prepare and Discuss Meaning of Advance Directives 9written and verbal) Early use of Ethics Consultants If no compromise the provider can withdraw or the family can discharge provider or transfer care

44. Opportunities for Change • Training and education—team concept, enhanced communication, greater awareness • Encourage dialogue about cases—utilize ethics and palliative care consultation services • Encourage hospital policy that promotes and automates early palliative care and hospice referral • Advocate for health policy reform • OH DNR—success! • Clarify and enhance eligibility criteria for hospice • Improve reimbursement • Promote cultural awareness and health literacy • Promote social awareness

45. Summary • End of life care is challenging and often conflicted at any age • Hope and fear of abandonment may influence decisions about futile treatment • Futility is a useful but fluid and difficult concept to understand and apply • Palliative and interventional treatment can coexist – don’t wait • Good communication and the narrative of relationships are crucial to good outcomes • Consult ethics team early

46. Thank you!