1 Atul Gawande, M.D., Assistant Professor, Harvard Univ. Dep't of Health Policy and Mgmt., Response to a question after lecture at the Drew Heinz Speakers Series, in Pittsburgh, Pa. (Feb. 7, 2005).

2 See Medicare Program; Conditions for Coverage for End Stage Renal Disease Facilities, 70 Fed. Reg. 6184, 6202 (proposed Feb. 4, 2005) (“We believe that a dialysis facility has both the resources and a responsibility to make a good faith effort to work with every patient, including patients perceived to be disruptive or challenging … .”).

3 LAURIE KAY ABRAHAM, MAMA MIGHT BE BETTER OFF DEAD: THE FAILURE OF HEALTH CARE IN URBAN AMERICA 27-28 (University of Chicago Press 1993).

4 NAT’L INST. OF DIABETES & DIGESTIVE & KIDNEY DISEASES, U.S. RENAL DATA SYS., USRDS ANNUAL DATA REPORT: ATLAS OF END-STAGE RENAL DISEASE IN THE UNITED STATES 16 (2004), http://www.usrds.org/atlas.htm.

5 See Daniel Callahan, Societal Allocation of Resources for Patients with ESRD, in ETHICS AND THE KIDNEY 201, 208 (Norman G. Levinsky ed., 2001) (discussing history of ESRD legislation).

6 RENEE C. FOX & JUDITH P. SWAZEY, THE COURAGE TO FAIL: A SOCIAL VIEW OF ORGAN TRANSPLANTS AND DIALYSIS 346-47 (2d ed., rev. 2002).

7 See Allen R. Nissenson & Richard A. Rettig, Medicare's End-Stage Renal Disease Program: Current Status and Future Prospects, 18 HEALTH AFFAIRS 161, 177 (1999) (explaining that patients with ESRD are among the most medically vulnerable in the Medicare program).

8 Edmund D. Pellegrino, The Ethical Impact of Commodifying Health Care, 24 J. OF MED. & PHIL. 243, 247 (1999).

9 See generally FOX & SWAZEY, supra note 6, at 379 (discussing the great medical uncertainty in dialysis).

10 C.f. Medicare Program; Conditions for Coverage for End Stage Renal Disease Facilities, 70 Fed. Reg. at 6201 (stating that technicians take great care to respect privacy of patients especially with lack of physical barriers).

11 Norman G. Levinsky, Equity and Patient Autonomy in Dialysis, in ETHICS AND THE KIDNEY 99, 106 (Norman G. Levinsky ed., 2001).

12 Medicare Program; Conditions for Coverage for End Stage Renal Disease Facilities, 70 Fed. Reg. at 6200.

13 See Timothy S. Jost, Health Law and Administrative Law: A Marriage Most Convenient, 49 ST. LOUIS U. L.J. 1, 32 (2004) (explaining the likelihood of administrative oversight of health care continuing, given the inescapable public role in health-care financing).

14 Medicare Program; Conditions for Coverage for End Stage Renal Disease Facilities, 70 Fed. Reg. at 6249.

15 Id. at 6202.

16 See ALEXANDER M. CAPRON & IRWIN M. BIRNBAUM, TREATISE ON HEALTH CARE LAW §11.03(2)(b)(iii) (2004) (“The Omnibus Budget Reconciliation Act of 1986 requires that hospitals have in place a discharge planning process that ensures that Medicare patients receive a timely and smooth transition to the most appropriate type of and setting for post-hospital … care.”). See The Omnibus Budget Reconciliation Act of 1986, 42 U.S.C. §1395x(e)(6)(B) (2000).

17 M. Sapperstein, Dialysis: A Poem, NAPH News 2 (1971), reprinted in RENEE C. FOX & JUDITH P. SWAZEY, THE COURAGE TO FAIL: A SOCIAL VIEW OF ORGAN TRANSPLANTS AND DIALYSIS 324 (1974). … I am The final essence of the technological age, Flesh conjoined with plastic, vessels with steel, Coils, alarms, twisted tubing turning scarlet Deep within the machine dark blood Mixing with fluid, cellophane – separated, plugged in and turned on. Dear God Purify me.

18 Medicare Program; Conditions for Coverage for End Stage Renal Disease Facilities, 70 Fed. Reg. at 6222.

19 Cf. Richard A. Rettig, Historical Perspective, in ETHICS AND THE KIDNEY 3, 5 (Norman G. Levinsky ed., 2001) (“Belding Scribner and his colleagues at the University of Washington, drawing on the work of Koff, Teschan, Schreiner, Merrill and others, invented an ingenious device (the AV fistula and shunt apparatus) [in the early 1960’s] that enabled repeated connections to be made between a patient and the artificial kidney.”).

20 LEVINSKY, supra note 11, at 105 (“Understandably, caregivers are often hostile when confronted by abusive behavior, especially by individuals who appear to have ‘caused their own problems’”).

21 The use of the “behavioral contract” is a suggested technique to deal with difficult patients. Karren King & Alvin H. Moss, The Frequency and Significance of the “Difficult” Patient: The Nephrology Community's Perceptions, 11 ADVANCES IN CHRONIC KIDNEY DISEASE 234, 237 (2004).

22 The hospital continued to dialyze him in its inpatient facility. It required him to be admitted through the hospital admissions and to be discharged after each session, which unlike the first hospital, occurred every other day. The other patients in the facility were patients in the hospital, who were admitted for severe acute problems.

23 Several students and I made random visits to dialysis centers in the area to attempt to speak with them about why they would not accept our client as a patient. He had acquired a reputation among the dialysis care providers, in part because of his behavior, and in part because of the dissemination of the memorandum that described him in dangerous terms. No facility would accept him. He was blacklisted.

24 We filed one cause of action in the state court based on the dissemination of the memorandum and one in federal court based in disability discrimination against the four major dialysis chains who refused to accept our client as a patient.

25 William J. Winslade, Ph.D., J.D., D.H.L., is the James Wade Rockwell Professor of Philosophy in Medicine, Institute for the Medical Humanities, University of Texas Medical Branch. He is currently completing a comprehensive article titled “The Law and Ethics of Entitlement in End Stage Renal Disease.”

26 FOX & SWAZEY, supra note 6, at 346.

27 John E. Leggat, Jr. et al., Noncompliance in Hemodialysis: Predictors and Survival Analysis, 32 AM. J. KIDNEY DISEASE 139, 139 (1998).

28 Id.

29 Id. (citing R.J. Anderson & C. Matthews, Non-compliance: Failure of the Therapeutic Partnership, 2 CARDIOVASCULAR MEDICINE 464 (1981)).

30 Hall, Mark A., Can You Trust a Doctor You Can't Sue?, 54 DEPAUL L. REV. 303, 303 (2005)Google Scholar (“[T]rust sets the stage for … most of the major issues in health care law.”).

31 Medicare Program; Conditions for Coverage for End Stage Renal Disease Facilities, 70 Fed. Reg. 6223 (proposed February 4, 2005) (to be codified at 42 C.F.R. pt. 494). Most direct patient care is now performed by dialysis technicians. Some of the tasks performed by technicians include: preparing dialysis apparatus, initiating dialysis (including cannulation and venipuncture with large gauge needles), intravenous administration of heparin and sodium chloride solutions, subcutaneous or topical administration of local anesthetics in conjunction with placement of fistula needles, monitoring patients during dialysis, and documenting tasks and patient observations

32 David Sanders & Jesse Dukeminier, Jr., Medical Advance and Legal Lag: Hemodialysis and Kidney Transplantation, 15 UCLA L. REV. 357, 368 (1968) (citing three articles in medical journals in 1965 and 1966 noting psychological reactions attendant to dialysis).

33 Id. at 369.

34 Id. at 370.

35 Peter Schwartz et al., THE FORUM OF ESRD NETWORKS, DESIGNING A COLLABORATIVE ACTION PLAN WITH THE ESRD STAKEHOLDERS, app. B 23 (2003), available at http://www.esrdnetworks.org/DPPCFinalReport.pdf.

36 Pellegrino, supra note 8, at 243, 247(citing Ray, Marilyn Anne, Health Care Economics and Human Caring in Nursing: Why the Moral Conflict must be Resolved, 10 FAM. & CMTY. HEALTH 35 (1987)CrossRefGoogle ScholarPubMed and EDMUND D. PELLEGRINO & DAVID C. THOMASMA, FOR THE PATIENT's GOOD: THE RESTORATION OF BENEFICENCE IN HEALTH CARE (1987)).

37 Id.

38 Sherry J. Mason, The Role of the Staff in Managing Problem Patients, 24 DIALYSIS & TRANSPLANTATION 178 (1995).

39 Smirnow, Virgil, When They’re Less Than Cooperative, 24 DIALYSIS & TRANSPLANTATION 164 (1995)Google Scholar.

40 Preliminary information from the Dialysis Outcomes and Practice Patterns Study (DOPPS) reveals that better patient outcomes are associated with high levels of patient contact from one physician. Medicare Program; Conditions for Coverage for End Stage Renal Disease Facilities, 70 Fed. Reg. at 6209. See also FOX & SWAZEY, supra note 6, at 369 (Some of the new generation of physician-dialyzers have never personally dialyzed a patient, which the authors consider “a significant barometer of a new era and of the physician-patient relationships it may entail).

41 Medicare Program; Conditions for Coverage for End Stage Renal Disease Facilities, 70 Fed. Reg. at 6250.

42 Medicare Program; Conditions for Coverage for End Stage Renal Disease Facilities, 70 Fed. Reg. at 6209. William M. Bennett points out that the infrequency of physician contact with their dialysis patients distinctly differs from other parts of the world where patients are often seen by physicians at each dialysis session. He even goes so far as to state that the increased mortality rate in Unites States dialysis units versus those in Europe is owing in part to the intense physician involvement in Europe. William M. Bennett, Economic Issues in Nephrology Practice: Ethical Dilemmas, in ETHICS AND THE KIDNEY 212, 216 (Norman G. Levinsky ed., 2001).

43 Medicare Program; Revisions to Payment Policies Under the Physician Fee Schedule for Calendar Year 2004, 68 Fed. Reg. 63,196, 63,216 (Nov. 7, 2003).

44 Medicare Program; Conditions for Coverage for End Stage Renal Disease Facilities, supra note 12, at 6222.

45 See id. (describing states’ approaches).

46 Id. at 6222-6223, 6252.

47 Id.

48 Peter Schwartz et al., supra note 35, at 2 (setting forth the goal to adopt national curriculum/standard of education for dialysis technicians).

49 Congress authorized ESRD Networks in 1978; each of the eighteen geographical Networks collects data on Medicare ESRD patients and participates in the Forum for exchange of information. Nissenson & Rettig, supra note 7, at 171 n. 37.

50 King & Moss, supra note 21, at 234 (quoting The National Kidney Foundation, Inc. 2004).

51 Mark Meier, MSW, LICSW, Consumer Services Coordinator, Renal Network of the Upper Midwest, Inc., mmeier@nw11.esrd.net.

52 Network 11 is comprised of Michigan, Minnesota, North Dakota, South Dakota, and Wisconsin. 2004 USRDS Annual Data Report, supra note 4 at 230.

53 Peritoneal dialysis is performed every day at home by the patient after dialysis facility staff provides training. Haya R. Rubin et al., Patient Ratings of Dialysis Care with Peritoneal Dialysis vs. Hemodialysis, 291 JAMA 697, 697 (2004). Waste products are passed through the peritoneum, the abdominal cavity walls, by means of a solution that pulls them from the blood into the dialysis solution. National Institute of Diabetes and Digestive and Kidney Diseases, Treatment Methods for Kidney Failure: Peritoneal Dialysis, available at http://kidney.niddk.nih.gov/kudiseases/pubs/peritoneal/ (last visited June 14, 2005).

54 Haya R. Rubin et al., supra note 53, at 699.

55 Id.

56 Id.

57 Id.

58 Id.

59 Id.

60 Id.

61 Id.

62 Id.

63 Id.

64 Id.

65 Carolyn C. Johnson et al., Working with Noncompliant and Abusive Dialysis Patients: Practical Strategies Based on Ethics and the Law, 3 ADVANCES IN RENAL REPLACEMENT THERAPY 77 (1996).

66 Deane L. Wolcott et al., Treatment Compliance in End-Stage Renal Disease Patients on Dialysis, 6 AM. J. NEPHROL. 329, 330 (1986) (focusing on treatment compliance, with psychiatric syndromes such as depression and anxiety discussed as coexistent medical illnesses that complicate the problem of noncompliance).

67 Medicare Program; Conditions for Coverage for End Stage Renal Disease Facilities, 70 Fed. Reg. 6184, 6202 (proposed Feb. 4, 2005) (to be codified at 42 C.F.R. pts. 400, 405, 410, 412, 413, 414, 488, 494).

68 Forum of ESRD Networks Clearinghouse Office, Summary Report of the End Stage Renal Disease (ESRD) Networks’ Annual Reports 2000 (2000), http://www.cms.hhs.gov/ESRDNetworkOrganizations/Downloads/NetworkAnnualReport2000.pdf (discussing 1977 legislation in which Congress mandated geographic areas for the Networks to meet four goals within the ESRD program: improving the quality of health care services and quality of life for ESRD beneficiaries, improving data reporting, establishing cooperation among ESRD networks, and evaluating and resolving patient grievances).

69 42 U.S.C § 426-1 (2000).

70 42 C.F.R. §§ 413.176(a) (2005); Medicare Program; End-Stage Renal Disease Program; Prospective Reimbursement for Dialysis Services, 47 Fed. Reg. 6556, 6557-76 (Feb. 12, 1982) (codified at 42 C.F.R. pt. 405).

71 Medicare Program; End-Stage Renal Disease Program; Prospective Reimbursement for Dialysis Services and Approval of Special Purpose Renal Dialysis Facilities, 48 Fed. Reg. 21254, 21255 (May 11, 1983) (codified at 42 C.F.R. pt. 405).

72 Id. at 21260-68.

73 NAT’L INST. OF DIABETES & DIGESTIVE & KIDNEY DISEASES, supra note 4, at 192.

74 Norman G. Levinsky, Quality and Equity in Dialysis and Renal Transplantation, 341 NEW ENG. J. MED. 1691, 1693 (1999).

75 Medicare Program; Conditions for Coverage for End Stage Renal Disease Facilities, 70 Fed. Reg. 6184 (proposed Feb. 4, 2005) (to be codified at 42 C.F.R. pts. 400, 405, 410, 412, 413, 414, 488, 494).

76 Johnson, supra note 65, at 79 (“Some, if not most, noncompliant behavior is amenable to psychosocial intervention.”).

77 Medicare Program; Conditions for Coverage for End Stage Renal Disease Facilities, 70 Fed. Reg. 6184, 6202 (proposed Feb. 4, 2005) (to be codified at 42 C.F.R. pts. 400, 405, 410, 412, 413, 414, 488, 494) (“We believe that a dialysis facility has both the resources and a responsibility to make a good faith effort to work with every patient, including patients perceived to be disruptive or challenging, to provide the necessary assessment, training, knowledge, and motivation to facilitate good outcomes of care

78 King & Moss, supra note 21, at 234.

79 Medicare Program; Conditions for Coverage for End Stage Renal Disease Facilities, 70 Fed. Reg. 6184, 6253-54 (proposed Feb. 4, 2005) (to be codified at 42 C.F.R. pt. 494).

80 Id. at 6230.

81 42 C.F.R. § 405.2138(b)(2) (2005).

82 Id.

83 42 C.F.R. § 405.2136(f) (2005).

84 It must be noted that the rationale for transfers for the patient's welfare is a much larger set than the more narrow and stringent reason for discharge of the disruptive patient, especially when the patient has no receiving facility that is willing to accept the patient.

85 Medicare Program; Conditions for Coverage for End Stage Renal Disease Facilities, 70 Fed. Reg. 6184, 6186 (proposed Feb. 4, 2005) (to be codified at 42 C.F.R. pts. 400, 405, 410, 412, 413, 414, 488, 494).

86 NAT’L INST. OF DIABETES & DIGESTIVE & KIDNEY DISEASES, supra note 4, at 16.

87 Id.

88 Id.

89 Id. at 192.

90 Id.

91 But see John P. Geyman, The Corporate Transformation of Medicine and its Impact on Costs and Access to Care, 16 J. OF THE AM. BOARD OF FAM. PRAC. 443 (2003) (stating that eightyfive percent of dialysis centers in the United States are for-profit), available at http://www.jabfp.org/cgi/content/full/16/5/443 (last visited June 14, 2005).

92 Bennett, William M., Clash of Cultures: Nephrologists meet the Market Economy, 15 NEPHROL DIAL TRANSPLANT 1749 (2000)CrossRefGoogle ScholarPubMed.

93 Carin Rubenstein, Dialysis, Where Medicaid Steps In, N.Y. TIMES, Jan. 25, 2004, at 14WC 4.

94 Woolhandler, Steffie & Himmelstein, David U., The High Costs of For-Profit Care, 170 CAN. MED. ASSOC. J. 1814, 1814 (2004)CrossRefGoogle ScholarPubMed (relating examples of for-profit hospital fraud and abuse and for-profit HMO administrative costs).

95 See, e.g., Milt Freundenheim, Grand Jury Raises Possibility that Grace Violated Criminal Law, N.Y. TIMES, Feb. 13, 1996, at D8. In 1996, W.R. Grace & Company operated a dialysis division named National Medical Care Inc. At that time it was being investigated by three federal agencies. The first was a grand jury in New Jersey that a spokesperson for Grace said was called to determine whether it had made false statements to the FDA. Grace had said previously that the New Jersey grand jury was investigating whether National Medical Care had sold defective products as well as how the company handled complaints from customers. The second was a Virginia grand jury investigation into contracts between National Medical Care subsidiaries and companies set up by doctors that provide physicians and related services to these units. In the third investigation, a United States Attorney in Massachusetts issued five subpoenas for National Medical Care records in connection with an investigation by the United States Department of Health and Human Services for documents concerning: its management, employee and accounting practices, contracts and compensation of doctors, billing of employers whose retirees may be eligible for Medicare, and the conduct of National Medical Care laboratory testing and home dialysis businesses. Id.

96 German Company Settles Medicare Case, N.Y. TIMES, Nov. 25, 1999, at C16.

97 Milt Freudenheim, Swedish Holding Company to Buy U.S. Dialysis Provider, N.Y. TIMES, May 6, 1997, at D7.

98 Id.

99 German Company Settles Medicare Case, N.Y. TIMES, Nov. 25, 1999, at C16.

100 Id.

101 Edmund L. Andrews, German Company to Leave China Over Sales of Organs, N.Y. TIMES, Mar. 7, 1998, at A5.

102 Freudenheim, Swedish Holding Company to Buy U.S. Dialysis Provider, supra note 97.

103 Information Issued by U.S. Attorney's Office for the Eastern District of Missouri on Dec. 2: Gambro Healthcare Agrees to Pay Over $350 Million to Resolve Civil, Criminal Allegations in Medicare Fraud Case, U.S. FED NEWS, Dec. 2, 2004. Gambro Healthcare provided home dialysis patients equipment and supplies through a “shell” durable medical equipment company in violation of Medicare regulations, thereby receiving a higher rate of reimbursement than if it would have submitted the claims for payment directly; Gambro Healthcare engaged in “hard coding” of diagnostic codes on submitted claims which resulted in the submission of false statements for drugs and services that were not medically necessary; Gambro Healthcare hired and paid physicians based on the number and volume of anticipated referrals which in many cases violated fair market value; and Gambro Healthcare paid its joint venture partners illegal remuneration to refer or retain their patients at Gambro clinics. Gambro Healthcare was described by the U.S. Attorney's Office in Eastern Missouri as a public company listed on the Stockholm Stock Exchange with 2003 revenue of $3.2 billion. It owns and operates a global network of more than 700 dialysis clinics and provides treatment to about 54,900 patients. Id.

104 KIDNEY FAILURE AND THE FEDERAL GOVERNMENT 10 (Richard A. Rettig & Norman G. Levinsky eds., The National Academies Press 1991).

105 Garg, Pushkal P. et al., Effect of Ownership of Dialysis Facilities on Patients’ Survival and Referral for Transplantation, 341 NEW ENG. J. MED. 1653 (1999).CrossRefGoogle ScholarPubMed

106 Id.

107 Id. See also DAVID HIMMELSTEIN ET AL., BLEEDING THE PATIENT: THE CONSEQUENCES OF CORPORATE HEALTHCARE 135 (Common Courage Press 2001).

108 Patrick O’Neill, Studies Find Disparity in Kidney Care, THE OREGONIAN, Nov. 25, 1999, at A01.

109 Devereaux, P.J. et al., Comparison of Mortality Between Private For-Profit and Private Not-For-Profit Hemodialysis Centers, A Systematic Review and Meta-analysis, 288 JAMA 2449, 2449 (2002).CrossRefGoogle ScholarPubMed

110 Id. at 2452.

111 Id.

112 Id. at 2449.

113 See, e.g., Juan Bosch et al., Letter to the Editor, Quality of Care in Profit vs Not-For-Profit Dialysis Centers, 289 JAMA 3087 (2003) (challenging the Devereaux findings by suggesting that Deveraux and colleagues selected studies based on their results). But see Devereaux, et al., Letter to the Editor, Quality of Care in Profit vs Not-For-Profit Dialysis Centers--Reply, 289 JAMA 3089 (2003)CrossRefGoogle Scholar (answering that their study was structured in such a fashion as to make such results-based selection impossible).

114 Bennett, supra note 92, at 1749.

115 See Payton v. Weaver, 182 Cal. Rptr. 225, 230 (1982) Such a global solution to the problem does not appear in the proposed regulations; however, in my comments to CMS, I advocated for such a solution in the most intransigent of cases, as the judge in the most notorious case of this type suggested. Id.

116 One commentator, in noting that most abandonment cases occurred before 1950, opined that the lack of recent authority indicates how rarely physicians and hospitals abandon patients by prematurely discharging them. Andrea Jean Lairson, Comment, Reexamining the Physician's Duty of Care in Response to Medicare's Prospective Payment System, 62 WASH. L. REV. 791, 794 n. 21 (1987). It is interesting that the most recent and most quoted abandonment case is in the dialysis care setting. Brown v. Bower, No. J86-0759(B)(S.D. Miss. Dec. 21, 1987).

117 Payton v. Weaver, 182 Cal. Rptr. 225 (1982).

118 No. J86-0759(B) (S.D. Miss. Dec. 21, 1987).

119 MARCIA M. BOUMIL & DAVID J. SHARPE, LIABILITY IN MEDICINE AND PUBLIC HEALTH 31 (Thomson West 2004).

120 JANET L. DOLGIN & LOIS L. SHEPHERD, BIOETHICS AND THE LAW 545 (Aspen Publishers 2005); BARRY R. FURROW ET AL., HEALTH LAW: CASES, MATERIALS AND PROBLEMS 537 (5th ed. 2004).

121 MARK A. HALL ET AL., MEDICAL LIABILITY AND TREATMENT RELATIONSHIPS 127 (Aspen Publishers 2005).

122 David Orentlicher, Denying Treatment to the Noncompliant Patient, 265 JAMA 1579 (1991); Levine, supra note 152, at 778.

123 Payton, 131 Cal. App. 3d at 41.

124 Id.

125 Id. at 42.

126 Id.

127 Id.

128 Id.

129 Id.

130 Id.

131 42 U.S.C §291 (2005).

132 Payton, 131 Ca. App. 3d at 43.

133 Id.

134 Id. at 44.

135 Id. at 45.

136 Id.

137 Id. at 46.

138 Id.

139 Id. at 47.

140 Orentlicher, supra note 122, at 1582

141 Sheila Cohen Zimmer, panelist, The Abusive Patient: Ethical, Legal and Moral Responsibility of the Health Care Team, at the Fourth Annual Spring Clinical Nephrology Meetings of the National Kidney Foundation (Mar. 23-24, 1995), as summarized in Treating the Disruptive Patient, Ronald B. Miller, Nephrology News & Issues 39 (1995).

142 Payton, 131 Cal. App. 3d at 40.

143 Miller, supra note 141, at 39.

144 Id. Michael Brown also “had repeated episodes of peritonitis and uncontrolled uremia during three months on peritoneal dialysis; and he required many unscheduled hemodialysis sessions for fluid-overload pulmonary edema.”

145 Id.

146 Id.

147 Id.

148 Orentlicher, supra note 122, at 1580.

149 Bower, JD, The Issue: The Role of the Professional in the Management of Non-compliant or Problem Dialysis Patients, 24 DIALYSIS AND TRANSPLANTATION 173, 196 (1995)Google Scholar.

150 42 U.S.C. §§ 291-291o (2005).

151 However, as Orentlicher pointed out, practically speaking, the actual effect of the order as to the hospital necessarily involved the nephrologists, since Dr. Bower was the director of the nephrology clinic at the University Hospital. Orentlicher, supra note 122, at 1580. 152 David Z. Levine, Ed. Nephrology Ethics Forum: Case Presentation: What is Our Duty to a “Hateful” Patient? Differing Approaches to a Disruptive Dialysis Patient, 34 AM. J. OF KIDNEY DISEASES 775 (1999).CrossRefGoogle Scholar

153 Id.

154 Id.

155 Id.

156 Id. at 776.

157 Id.

158 Id.

159 Id.

160 However, it must be said that patients on Medicare and Medicaid bring in much less reimbursement than those covered by private insurance. Per member per year (PMPY) costs for Medicare dialysis patients, counting deductions and copayments by secondary insurers, are approximately $63,000; PMPY costs in the Employer Group Health Plans (EGHP) amount to approximately $105,000. As the 2004 Annual Data Report Atlas of ESRD in the United States comments, “And because these EGHP costs are for patients younger than 65, who in the Medicare populations have lower expenditures than patients age 65 and older, the differences are more stark than they first appear.” Id. at 204. Thus, the poor discharged patient's chances of being accepted are compounded by the presence of Medicaid as their health insurance.

161 It is interesting to note that Dr. Eli Friedman, who was a principal discussant at the Neurology Ethics Forum on May 21, 1999, at Boston University School of Medicine on the issue of “What is Our Duty to a ‘Hateful’ Patient? Differing Approaches to a Disruptive Dialysis Patient” made the following comment: “Only rarely have we had to carry our exasperation to the limit in our inner-city dialysis program [by sending out actual discharge letters], where serious socioeconomic problems confound uremia therapy. On reflection, even these catastrophes in health care delivery were avoidable.” Eli Friedman, What Is Our Duty to a “Hateful” Patient? Differing Approaches to a Disruptive Dialysis Patient, 34 AM. J. KIDNEY DISEASES 775, 784-85 (1999).

162 In another case, a patient was abandoned by local dialysis providers and made to drive 150 miles to and from her remote town three days a week solely because she was a difficult patient. Robert Reinhold, When Doctors Shun Difficult Patients, N.Y. TIMES, Nov. 14, 1988, at A16 (calling attention to those instances of physicians’ refusal to treat litigious clients, as the patient in this case had sued physicians for malpractice).

163 I am grateful to Dr. William Winslade for this insight that verbal abuse alone is not sufficient reason to discharge a dialysis patient from treatment against his wishes.

164 Medicare Program; Conditions for Coverage for End Stage Renal Disease Facilities, 70 Fed. Reg. 6184, 6200 (proposed Feb. 4, 2005).

165 See Childs v. Weis, 440 S.W.2d 104 (Tex. Civ. App. 1969) (imposing no liability on a physician who refused to treat a bleeding pregnant woman in labor, where no prior treatment relationship existed); see also Hurley v. Eddingfield, 59 N.E. 1058 (Ind. 1901) (finding no duty to aid person in peril).

166 Thomas A. Gionis, Carlos A. Camargo, Jr. & Anthony S. Zito, Jr., The Intentional Tort of Patient Dumping: A New State Cause of Action to Address the Shortcomings of the Federal Emergency Medical Treatment and Active Labor Act (EMTALA), 52 AM. U. L. REV. 173, 186 (2002).

167 Judith F. Daar, A Clash at the Bedside: Patient Autonomy v. A Physician's Professional Conscience, 44 Hastings L. J. 1241, 1266 (1993).

168 Id.

169 Schwartz et al., supra note 35, at Appendix B, at 14.

170 Eli A. Friedman, Must (Should) All ESRD Patients Be Treated?, in ETHICS AND THE KIDNEY 201, 294 (Norman G. Levinsky ed., 2001).

171 Both Payton and Brown applied the “no duty to treat” principle to dialysis facilities by expansion.

172 See Lyons v. Grether, 239 S.E.2d 103, 106 (Va. 1977) (reversing judgment in plaintiff's favor for determination of questions of fact regarding whether the physician had a right to withdraw services from the plaintiff and whether plaintiff had a reasonable opportunity to acquire the services she needed from another physician).

173 There is considerable confusion concerning what a terminating physician is bound to do in general circumstances. As one commentator has stated, the case law on point, citing Payton, does not require the physician to locate a substitute physician, as long as the physician gives adequate notice of his discharge. Mark A. Hall, A Theory of Economic Informed Consent, 31 GA. L. REV. 511, 531 (1997). Indeed, courts have rejected plaintiffs’ asserted theory of abandonment as including a duty on the part of the discharging physician to substitute with another physician. See Miller v. Greater Se. Cmty. Hosp., 508 A.2d 927 (D.C. 1986).

174 Johnson v. Vaughan, 370 S.W.2d 591, 596 (Ky. 1963). See also Drechsler, C. T., Annotation, Liability of Physician for Lack of Diligence in Attending Patient, 57 A.L.R. 2d 379, 388 (2002)Google Scholar; Katsetos v. Nolan, 368 A.2d 172 (Conn. 1976) (citing 70 C.J.S. Physicians and Surgeons § 48 (2005).

175 42 C.F.R. §405.2138 (b)(2) (2004).

176 See Payton, 182 Cal. Rptr. at 228 (“The [trial court] concluded, after a weighing of the evidence, that Brenda ‘has no legal right to compel medical service from any of the Respondents for chronic or regular care of her kidney problems through dialysis.’”).

177 In fact, the Dialysis Patient-Provider Conflict report instructs that a list of alternative providers is only required to be provided when a patient requests it. Schwartz et al., supra note 35.

178 See Ramiro Valdez & Alex Rosenblum, Suggested Steps for Dismissal of the Problematic Patient, 22 DIALYSIS AND TRANSPLANTATION 610 (1993).

179 At this step, the purpose is to make clear to the patient that there are changes that he can make that will alleviate the problem behavior; however, failure to abide by the plan of corrective action will result in dismissal from the clinic. Id. Interestingly, intervention by the social worker is included as a possible option: “It MAY even by appropriate to include appointment times with the clinical social worker to discuss any emotional problems that may be causing the problematic behavior.” Id. (emphasis added). A greater and more substantive role for the social worker is one of the four major proposed actions to address the challenges of the disruptive patient. The Executive Summary of the Dialysis Patient-Provider Conflict initiative states: “Major convergence was achieved on four important actions as the highest priority. These are: Adopt the setting of national curriculum/standard of education for dialysis technicians; Increase reimbursement in keeping with inflation for dialysis so that financially stretched corporations can implement educational and other initiatives for DPPC; Adopt comprehensive regulations for the procedures and standards for limiting and terminating patient services at a facility; and Leverage dialysis units to ‘make’ social workers do what they are supposed to—not be clerical workers.” Schwartz et al., supra note 35, at 2 (emphasis added).

180 Meier, supra note 51.

181 Id.

182 The situation that is described assumes that the patient is not a suitable subject for peritoneal dialysis, which requires strict adherence to sterile technique by the patient and a positive working relationship with the treatment team. The demands of self care in peritoneal dialysis may make patients with mental disabilities unable to use this method. See David Kohn, Peritoneal Dialysis Offers Patients a Life Unplugged; Johns Hopkins Study Shows Many Could Use Alternative Treatment, THE BALTIMORE SUN, Feb. 11, 2004, at A4.

183 Indeed, the experience with our client made this fact apparent. No outpatient dialysis center would accept our client, even after the lifting of an ill-gotten preliminary injunction, evidence of his success in his makeshift dialysis care arrangement in the hospital inpatient center, and interventions with Network representatives, the state health department and the regional office of the Centers for Medicare and Medicaid Services.

184 § 1395dd (b)(1); See Gary Jones, The Requirement that Private Hospitals Provide Emergency Care to Indigents as Eminent Domain, 20 J. LEGIS. 179, 188 (1994).

185 See § 1395dd (b)(1). Cf. H.R. Rep. No. 99-241, at 27, reprinted in 1986 U.S.C.C.A.N. 579, 605 (stating that EMTALA's purpose was to “provide a strong assurance that pressure for greater hospital efficiency are not to be construed as license to ignore traditional community responsibility and loosen historical standards.”).

186 42 U.S. C. § 1395dd (1986).

187 Id.; See generally Cleland v. Bronson Health Care Group, Inc., 917 F. 2d 266, (6th Cir. 1990) (Congress created EMTALA to prevent indigent “patient dumping,” but because of numerous undefined terms and ambiguities, courts now interpret EMTALA as applying to any person who “comes to any emergency department,” regardless of financial status).

188 § 1395dd (a).

189 § 1395dd (b) (1) (A).

190 See § 1395dd (e)(1) (defining “emergency medical condition” as: “(A) a medical condition manifesting itself by acute symptoms of sufficient severity (including severe pain) such that the absence of immediate medical attention could reasonably be expected to result in – (i) placing the health of the individual …in serious jeopardy, (ii) serious impairment to bodily functions, or (iii) serious dysfunction of any bodily organ or part … .” § 1395dd (e)(1).

191 Payton, 131 Cal. App. 3d at 45-46.

192 California, Minnesota, Pennsylvania, Tennessee, Virginia, Washington, and Wisconsin treat the need for dialysis as an emergency condition for purposes of immigrants’ Medicaid coverage. National Health Law Project, Survey, Mini-survey on State Coverage of Dialysis and Chemotherapy for Immigrants, Mar. 8, 2002, http://www.healthlaw.org/library.cfm?fa=download&resourceID=74624&appView=folder&print (last visited Feb. 20, 2006) (showing results of a survey in various states regarding coverage of kidney dialysis within the definition of “emergency medical conditions” for purposes of immigrants’ Medicaid coverage).

193 See generally, Tiana Mayere Lee, An EMTALA Primer: The Impact of Changes in the Emergency Medicine Landscape on EMTALA Compliance and Enforcement, 13 ANN. HEALTH L. 145 (2005) (Patient dumping, in the context of indigent patients, remains a problem despite the continued existence of EMTALA and an increasing amount of federal guidance).

194 Bryan v. Rectors and Visitors of the Univ. of Va., 95 F. 3d 349, 351 (4th Cir. 1996) (EMTALA was intended to provide redress for indigent patients with emergency conditions who are discharged without stabilizing treatment from ER facilities).

195 Gionis and colleagues suggest a new intentional tort of “Patient Dumping” or “Improper Transfer” that was rejected by the court that considered it. Coleman v. Deno, 787 So. 2d 446 (La. Ct. App. 2001), aff’d in part, modified in part, and remanded by 813 So. 2d 303 (La. 2002). The Supreme Court of Louisiana rejected the plaintiff's assertion of a state cause of action in the form of an intentional tort of patient dumping. One of the eleven problems that Gionis and colleagues state they find with the opinion lies in their depiction of the act's natures “an intentional act of depriving a person of emergency medical care not based on any medical reason, but rather based on discrimination; either economic or non-economic non-medical grounds. Accordingly, we anticipate that its use will be strictly reserved for application to patient transfers that are the result of shameful acts of discrimination.” 196 Medicare Program; Conditions for Coverage for End Stage Renal Disease Facilities, 70 Fed. Reg. 6184, 6200 (proposed February 4, 2005) (“We believe that a dialysis facility has both the resources and a responsibility to make a good faith effort to work with every patient, including patients perceived to be disruptive or challenging, to provide the necessary assessment, training, knowledge, and motivation to facilitate good outcomes of care.”).

197 John D. Bower, The Issue: The Role of the Professional in the Management of Noncompliant of Problem Dialysis Patients, 24 DIALYSIS & TRANSPLANTATION 173 (1995).

198 Id. See Medicare Program; Conditions for Coverage for End Stage Renal Disease Facilities, 70 Fed. Reg. at 6200.

199 Levine, supra note 152, at 780.

200 42 U.S.C. §§ 12,101-12,213 (2004).

201 The Rehabilitation Act, 29 U.S.C. § 794 (a) (2004), Section 504, prohibits discrimination because of a disability by any program receiving Federal financial assistance: “No otherwise qualified individual with a disability in the United States … shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance or under any program or activity conducted by an executive agency or by the United States Postal Service.” The receipt of Medicare funds brings a facility within the ambit of the Rehabilitation Act. See James Lockhart, Who is Recipient of, and What Constitutes Program or Activity Receiving Federal Financial Assistance for Purposes of §504 of Rehabilitation Act (29 U.S.C.A. §794), which Prohibits any Program or Activity Receiving Financial Assistance from Discrimination on Basis of Disability, 160 A.L.R. FED. 297 (2005). In Brown v. Bower, No. J86-0759(B) (S.D. Miss. Dec. 21, 1987), the court rejected the plaintiff's argument that the hospital's denial of treatment violated the Rehabilitation Act's prohibition against handicap discrimination.

202 Orentlicher, supra note 122, at 1580.

203 Id.

204 Lois Shepherd, Health Care and the Americans with Disabilities Act: HIV, the ADA, and the Duty to Treat, 37 HOUS. L. REV. 1055, 1059-60 (2000) (using Bragdon v. Abbott, 524 U.S. 624 (1998), as a reference point to argue that requiring plaintiffs to prove disability perpetuates three problems: (1) we allow discrimination on the basis of irrelevant differences in abilities in those cases in which a person does not qualify as a member of the class of persons who are defined as disabled; (2) we reinforce artificial boundaries between the able and disabled, and thus risk failing to address underlying reasons for the discrimination; and (3) we do not appreciate the need for nondiscriminatory health care treatment for all, not just the group that is labeled as “disabled.”)

205 Indeed, Brenda Payton exhibited behaviors that put her at the extreme end of noncompliance: she was unable to care for her children; she had no family support; one brother was in prison and the other was a mental patient; she had been addicted to heroin and barbiturates for over 15 years; after entering into a court supervised stipulation that ordered her continued treatment provided she complied, she continued to buy drugs at least twice a week on the street; she gained as much as 15 kilograms between dialysis treatments; she was late and missed treatments altogether; she had 30 emergency hospitalizations in 11 months because of missed appointments; she discontinued her counseling after a brief period; when she came for her treatments, she was frequently in a drugged or alcoholic condition, she used profane language, she annoyed other patients, she cursed the staff, and she even pulled out the dialysis needle which caused her “blood to spew, and [she] expos[ed] her genitals in a lewd manner.” Payton v. Weaver, 131 Cal. App. 3d 38, 41-43 (1982).

206 Ingrid Kinkopf-Zajac, Note, Assessing Patient Compliance in the Selection of Organ Transplant Recipients, 6 HEALTH MATRIX 503, 532 (1996) (citing Orentlicher, supra note 122, at 1580).

207 42 USC §12,181 (2000).

208 Michelle Parikh, Burning the Candle at Both Ends, and There is Nothing Left for Proof: The Americans with Disabilities Act's Disservice to Persons with Mental Illness, 89 CORNELL L. REV. 721, 750 (2004) (noting that many mentally ill individuals have an altered perception of reality), citing to Jennifer Hughes, AN OUTLINE OF MODERN PSYCHIATRY 4 (3d ed. 1991) (defining mental illness as involving, among other things, disorders in thought, perception, and cognition, and as sometimes including psychosis, and symptoms outside normal experience, such as hallucinations or delusions).

209 Characterizing the dialysis setting as one that is rife with stresses that are challenging to most patients would undermine the impairment that interferes with access to dialysis care as “commonplace,” as the Fourth Circuit stated in Forrisi v. Bowen, 794 F. 2d 931, 934 (4th Cir. 1986): “[T]he very characteristic of an impairment implies a characteristic that is not commonplace … .” On the other hand, isn't this just another way of saying that dialysis, or more properly ESRD, can drive a person crazy? It should not make it any less of a “disability” that mental illness is caused by necessary medical treatment.

210 For a discussion of the shortcomings of the definition of disability within the ADA, see Mary Crossley's elucidation of the problems of obesity and of pain as presenting the serious limitations of a medicalized approach to disability, rather than an approach that considers the discrimination that has flowed from a person's physical [and, I might add, psychological] characteristics. Mary Crossley, The Disability Kaleidoscope, 74 NOTRE DAME L. REV. 621, 688 (1999).

211 The Rehabilitation Act of 1973 has the same definition of disability. 29 U.S.C. § 705(20)(B) (2000).

212 Of the 110 cases brought under the ADA that were reported in 1995-1996 that raised the question of whether the plaintiff was disabled, the courts found the plaintiff to be disabled for purposes of the ADA in only six of the cases. Lawrence O. Gostin et al., Disability Discrimination in America: HIV/AIDS and Other Health Conditions, 281 JAMA 8 (1999).

213 The remedy that would be available under the ADA is injunctive relief. 42 U.S.C. §12188 (a)(1) (2000). Compensatory damages would be available from a successful Rehabilitation Act case under §504, with a showing of intentional discrimination. Franklin v. Gwinnett County Public Schools, 503 U.S. 60 (1992).

214 In 42 C.F.R. § 405.2137(b)(1) a personalized patient care plan is to be developed that is personalized for the individual patient and that “reflects the psychological, social and functional needs of the patient, and indicates the ESRD and other care required as well as the individualized modifications in approach necessary to achieve the long-term and short-term goals.”

215 28 C.F.R. § 36.101 (2004).

216 Id.

217 Id. Two other examples of public accommodation discrimination are the failure to remove barriers that are structural in nature, where such removal is structural and the failure to provide alternative methods to make accommodations for the disabled, if such are readily achievable. § 36.101.

218 Bragdon v. Abbott, 524 U.S. 624, 141 L. Ed. 2d 540, 118 S. Ct. 2196 (1998).

219 Abbott v. Bragdon, 107 F. 3d 934, 946 (1st Cir. 1997).

220 Abbott v. Bragdon, 163 F. 3d 87, 88-89 (1st Cir. 1998), aff’d, 524 U.S. 624 (1998).

221 Id. at 89.

222 Gostin et al, supra note 212.

223 Lesley v. Chie, 250 F. 3d 47, 57 (1st Cir. 2001).

224 Wagner v. Fair Acres Geriatric Ctr., 49 F.3d 1002 (3d Cir. 1995).

225 Wagner v. Fair Acres Geriatric Ctr., 859 F. Supp. 776, 784 (E.D. Pa. 1994).

226 Wagner, 49 F. 3d at 1012.

227 Id. at 1017.

228 Id. at 1019.

229 Kirbens v. Wyoming State Bd. of Med., 992 P. 2d 1056 (Wyo. 1999).

230 Id.

231 Id.

232 Id.

233 Dudley v. Hannaford Bros. Co., 333 F. 3d 299, 307 (1st Cir. 2003) (retailer's refusal to sell alcoholic beverages to a disabled person with symptoms that mimicked “intoxication” is actionable for its inflexibility; thus, the injunction, civil penalty and award of counsel fees are upheld).

234 Id. at 307-08 (citing PGA Tour, Inc. v. Martin, 532 U.S. 661, 683 n. 38 (2001)).

235 Joel Teitelbaum & Sara Rosenbaum, Medical Care as a Public Accommodation: Moving the Discussion to Race, 29 AM. J. L. & MED. 381, 387 (2003).

236 Id. at 386.

237 29 U.S.C. § 794 (2000).

238 Shepherd, supra note 204, at 1068.

239 Id. at 1078.

240 But see Hall et al., supra note 121, at 109 (Bragdon v. Abbott suggests that satisfying the definition of disability in the health care context will be less demanding than in the employment context).

241 Shepherd, supra note 204, at 1081.

242 Id. at 1082-85 (stating that there are four justifications for a duty to treat: Health care is a uniquely important good, with devastating effects on people who are denied it; Health care providers enjoy freedom from lay control; Any kind of discrimination is bad, even that which does not meet the ADA definition; and it is essential to promote trust between patients and physicians).

243 Id. at 1098. Shepherd freely states that certain justifications should be considered as possible “good” reasons that a doctor may give when denying care: “(1) the patient's inability to pay or lack of insurance coverage; (2) the patient's request for services outside the physician's regular office hours; (3) the physician's consistently applied policy not to accept any new patients; (4) the objective threat of contagion of a disease that is fatal or seriously disabling which cannot be adequately reduced through the use of reasonable precautions; (5) a request for services outside the realm of competence of the physician; (6) the physician's moral objection to the care sought (but not the condition that requires it); and (7) the patient's failure to comply with an appropriate treatment regimen.”

244 Id.

245 But see Susan Moriarity Miltko, The Need for Professional Discretion: Health Professionals under the Americans with Disabilities Act, 89 NW. U. L. REV. 1731 (1995) (Physicians’ decision not to treat should be accorded discretion and judged under the standards of the profession).

246 David Orentlicher, Destructuring Disability: Rationing of Health Care and Unfair Discrimination against the Sick, 31 HARV. C.R.–C.L. L. REV. 49 (1996).

247 Id. at 52.

248 Id. at 71.

249 Id. at 72.

250 Orentlicher continues by discussing rationing in particular service areas, for example, caps on mental health hospital days. Id. The destructured disability standard would prohibit such caps on services “if some people who need the service would realize a reasonable minimum level of benefit from it.” Id. at 84. This shifts the focus to one of equal protection on the level of the individual patient, which the author stresses is a statutory requirement of both the ADA and the Rehabilitation Act.

251 Id. at 52.

252 See id. at 87.

253 Id. at 72.

254 The “direct threat” exception is defined as “a significant risk to the health and safety of others that cannot be eliminated by a modification of policies, practices or procedures or by the provision of auxiliary aids or services.” 42 U.S.C. § 12182 (b)(3) (2000).

255 Id. at § 12182 (b)(1)(B).

256 FOX & SWAZEY, supra note 6, at 346.

257 Maxwell J. Mehlman, The Patient-Physician Relationship in an Era of Scarce Resources: Is there a Duty to Treat?, 25 CONN. L. REV. 349, 388 (1993).

258 See generally discussion supra at section VIII.B.1.

259 Mehlman, supra note 257, at 360. Maxwell J. Mehlman refers to the physician's option, not to enter into a relationship with a patient in the first place, as “Axiom 1.”

260 COUNCIL ON ETHICAL & JUDICIAL AFFAIRS, AM. MED. ASS’N, CODE OF MEDICAL ETHICS: CURRENT OPINIONS WITH ANNOTATIONS xiv (1998-1999): “The medical profession has long subscribed to a body of ethical statements developed primarily for the benefit of the patient. As a member of this profession, a physician must recognize responsibility not only to patients, but also to society, to other health professionals, and to self.”

261 See Lyons v. Grether, 239 S.E.2d 103, 105 (Va. 1977) (providing examples of cases holding that in the absence of a statute, a physician has no legal obligation to accept as a patient everyone who seeks his services).

262 KIDNEY FAILURE AND THE FEDERAL GOVERNMENT, supra note 104, at 58 (“Continuity of care must be ensured because of the life-sustaining nature of the therapy.”).

263 See Ellen Wertheimer, Ockham's Scalpel: A Return to a Reasonableness Standard, 43 VILL. L. REV. 321 n. 29 (1998), in which she discusses state statutes prohibiting the corporate practice of medicine and explains the prohibition against the practice of medicine by corporations protects physicians and patients by preventing the corporation from making treatment decisions.

264 Payton v. Weaver, 131 Cal. App. 3d 38, 47 (1982) (“And, while disruptive conduct on the part of a patient may constitute good cause for an individual hospital to refuse continued treatment, since it would be unfair to impose serious inconvenience upon a hospital simply because such a patient selected it, it may be that there exists a collective responsibility on the part of the providers of scarce health resources in a community, enforceable through equity, to share the burden of difficult patients over time, through an appropriately devised contingency plan”).

265 Friedman, supra note 170, at 93 (providing a pragmatic approach to resolution of kidney patient-staff confrontation: 1. Remove ‘communication spoilers’, such as criticizing, name-calling, moralizing, threatening,, ordering and psychologic diagnosing persons. 2. Employ ‘reflective listening’ to show that the patient has been ‘heard’. Deal directly with problem behaviors: small steps, involve the patient, build on patient's strengths, be clear on who is to do what and when. 4. Devise new approaches to ‘old problems’, such as lateness and complaints. 5. Detail the consequences of aberrant behavior in terms that are comprehensible. 6. Prepare a behavior contract that specifies what is to be done by patient and renal team. 7. Prepare in advance to manage anger. 8. Anticipate for the staff a step-by-step coping with agitated and disruptive patients. 9. Establish and publicize a grievance procedure. 10. Appoint a patient representative. “In my experience, all ten items listed above can be distilled down to a single admonition: ‘Carefully listen to the patient's complaints and wants’”).