A New Style of End-of-life Cases: A Patient’s Right to Demand Treatment or a Physician’s Right to Refuse Treatment? The Futility Debate Revisited

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A classic end-of-life conflict between a physician and a patient concerns a patient’s refusal of care. New conflicts have begun to emerge. This time the patient wants treatment while the physician refuses treatment based on a futility judgment. Most of the time the predominance of the physician’s view is stressed. In this article this predominance is critically analysed resulting in a re-appraisal of the patient’s will.




T.E. Quill, R. Arnold and A.L. Back, “Discussing treatment preferences with patients who want “everything”, Ann.Intern.Med. (151) (2010) 345-349; R.D. Truog, A.S. Brett and J. Frader, “The problem with futility”, N.Eng.J.Med. (326) (1992) 1562; A. Lelie and M. Verweij, “Futility without a dichotomy: towards an ideal physician-patient relationship”, Bioethics (17) (2003) 21-31; D.J. Doukas and L.B. McCullough, “A preventive ethics approach to counseling patients about clinical futility in the primary care setting”, Arch.Fam.Med. (5) (1996) 589-592; E.M. Levine, “A new predicament for physicians: the concept of medical futility, the physician’s obligation to render inappropriate treatment, and the interplay of the medical standard of care”, J.L. & Health (9) (1994-95) 82-84; T.M. Pope, “Medical futility statutes: no safe harbour to unilaterally refuse life-sustaining treatment”, Tenn. L. Rev. (75) (2007) 9; S. Moratti, “The development of “medical futility”: towards a procedural approach base don the role of the medical profession”, J. Med. Ethics (35) (2009) 372; B. Rowland, “Communicating past the conflict: solving the medical futility controversy with process-based approaches”, U. Miami Int’l & Comp. L .Rev. (14) (2006) 304 f.f.; P.R. Helft, M. Siegler and J. Lantos, “The rise and fall of the futility movement”, N. Eng. J. Med. (343) (2000) 293-296; D.L. Kasman, “When is medical treatment futile? A guide for students, residents, and physicians”, J. Gen .Intern. Med. (19) (2004) 1055; M. Kwiecinski, “To be or not to be, should doctors decide? Ethical and legal aspects of medical futility policies”, Marq. Elder’s Advisor (7) (2006) 322-323, 353-354.


G.R. Scofield, “Medical futility: can we talk?”, Generations (18) (1994) 66-70; T.R. Fried, E.H. Bradley, V.R. Towle et al., “Understanding the treatment preferences of seriously ill patients”, N.Eng.J.Med. (346) (2002) 1061-1066; D. Carr and S.M. Moorman, “End-of-life treatment preferences among older adults: an assessment of psychosocial influences”, Sociological Forum (24) (2009) 754-778.


E.g. Rowland, supra note 2, pp. 283-284 (A combination of quantitative and qualitative futility).


Moratti, supra note 2, p. 371.


E. Gampel, “Does professional autonomy protect medical futility judgments?”, Bioethics (20) (2006) 102; Delbeke, supra note 1, no. 1358-1361.


Delbeke, supra note 1, no. 1354-1355; Levine, supra note 2, p. 79; Moratti, supra note 2, p. 369; D.B. Waisel and R.D. Truog, “The cardiopulmonary resuscitation-not-indicated order: futility revisited”, Ann. Intern. Med. (122) (1995) 304-308.


Belgium: Delbeke, supra note 1, no. 1355; H. Nys, Geneeskunde. Recht en Medisch Handelen, in APR, (Malines: Story-Scientia, 2005), p. 358; S. Tack and T. Balthazar, Patiëntenrechten. Informed consent in de zorgsector: recente evoluties, in CABG, (Brussels: De Boeck & Larcier, 2007), p. 71. United States: Causey v. St. Francis Medical Center, 719 So.2d 1072, 1074-1075 (Louisiana Court of Appeal, 1998); N.L. Cantor, “Twenty-five years after Quinlan: a review of the jurisprudence of death and dying”, J.L. Med. & Ethics (29) (2001) 185; K. Shiner, “Medical futility: a futile concept?”, Wash. & Lee L. Rev. (53) (1996) 829; E.F. Mcardle, “New York’s do-not-resuscitate law: groundbreaking protection of patient autonomy or a physician’s right to make medical futility determinations?”, DePaul J. Healthcare L. (6) (2002) 79.


J. Menikoff, “Demanded medical care”, Ariz. St. L J. (30) (1998) 1098; Levine, supra note 2, p. 76.


Gampel, supra note 8, p. 94.


R.M. Veatch and C.M. Spicer, “Medically futile care: the role of the physician in setting limits”, Am.J.L. & Med. (18) (1992) 18-19; Mcardle, supra note 11, pp. 78-79; Shiner, supra note 11, p. 826.


Waisel and Truog, supra note 10, p. 305. E.g. Causey v. St. Francis Medical Center, 719 So.2d 1072, 1073 (The physician was of the opinion that treatment was futile, regardless of the possibility that with treatment the patient could have lived for two more years. The chance of regaining consciousness was one to five percent) (Louisiana Court of Appeal, 1998).


Kasman, supra note 2, pp. 1053-1054.


Delbeke, supra note 1, no. 1356-1357; Strasser, supra note 12, pp. 524-525.


Waisel and Truog, supra note 10, p. 305.


Levine, supra note 2, p. 76.


Belgium: Delbeke, supra note 1, no. 1362-1365. The Netherlands: H.J.J. Leenen, J.K.M. Gevers and J. Legemaate, Handboek Gezondheidsrecht, Deel I Rechten van Mensen in de Gezondheidszorg, (Houten: Bohn Stafleu van Loghum, 2007) pp. 321-322; J.K.M. Gevers, “Beslissen over wel of niet reanimeren”, TvGR (1991) 417; Royal Dutch Medical Association, Begrippen en Zorgvuldigheidseisen Rond het Levenseinde, 2005, p. 13 (http://knmg.artsennet.nl); Dutch Reanimation Council, Starten, Niet Starten en Stoppen van de Reanimatie, 2008, pp. 7-10 (http://www.reanimatieraad.nl); T.F.M. Hooghiemstra, “Medisch zinloos handelen”, TvGR (1997) 274. United States: Pope, supra note 2, p. 34 f.f.


The Netherlands: CAL, Medisch Handelen Rond het Levenseinde bij Wilsonbekwame Patiënten, (Houten: Bohn Stafleu Van Loghum, 1997) pp. 91-93; Leenen et al., supra note 24, pp. 326-327; S. Gevers, “Withdrawing life support from patients in a persistent vegetative state: the law in the Netherlands”, Eur.J.Health L. (11) (2005) 350. England: Airedale N.H.S. Trust Respondents v. Bland, [1993] A.C. 789, 897 (House of Lords, 1993); L. Skene, “Neuroimaging and the withdrawal of life-sustaining treatment from patients in vegetative state”, Med.L.Rev. (17) (2009) 257, 260; J. Munby, “Consent to Treatment: Children and the Incompetent Patient”, in: A. Grubb and J. Laing (eds.), Principles of Medical Law, (Oxford: Oxford University Press, 2004) pp. 305, 309. United States: Schneiderman et al., supra note 15, pp. 949-954; Strasser, supra note 12, pp. 549, 556. Canada: Child and Family Services of Central Manitoba v. R.L. and S.L.H., 154 D.L.R. 409 (Manitoba Court of Appeal, 1997); B. Sneiderman, “A do not resuscitate order for an infant against parental wishes: a comment on the case of Child and Family Services of Central Manitoba v. R.L. and S.L.H.”, Health Law J. (7) (1999) 205-231. Contra: K. Paync, R.M. Taylor, C. Stocking and G.A. Sachs, “Physicians’ attitudes about the care of patients in the persistent vegetative state: a national survey”, Ann. Intern. Med. (125) (1996) 104-110.


Delbeke, supra note 1, no. 1364.


P.A. Gomez, “Promises and pitfalls: an analysis of the shifting constitutional interests involved in the context of demanding a right to treatment in healthcare”, Alb.L.Rev. (64) (2000) 391; Moore, supra note 5, p. 458.


P.S. Appelbaum, C.W. Lidz and A. Meisel, Informed consent. Legal theory and clinical practice, (New York: Oxford University Press, 1987) p. 25; President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Making healthcare decisions. A report on the ethical and legal implications of informed consent in the patient-practitioner relationship, (Washington, 1982) pp. 43-44.


Belgium: Nys, supra note 11, p. 168; M. Van Overstraeten, “Une Manifestation Particulière du Droit du Patient au Consentement Libre et Eclairé: la Faculté de Rédiger une Déclaration Anticipée”, in: G. Schamps (ed.), Evolution des Droits du Patient, Indemnisation Sans Faute des Dommages Liés aux Soins de Santé: le Droit Médical en Mouvement, (Brussels: Bruylant, 2008) p. 130. The Netherlands: Royal Dutch Medical Association, Arts en schriftelijke wilsverklaringen, 2002, pp. 11-12 (http://knmg.artsennet.nl); Leenen et al., supra note 24, p. 208; C. Kelk, “Previously Expressed Wishes Relating to End of Life Decisions”, in: J.K.M. Gevers, E.H. Hondius and J.H. Hubben (eds.), Health Law, Human Rights and the Biomedicine Convention. Essays in Honour of Henriette Roscam Abbing, (Leiden: Martinus Nijhoff Publishers, 2005) p. 140. England: Royal College of Physicians and British Society of Gastroenterology, Oral Feeding Difficulties and Dilemma’s. A Guide to Practical Care, Particularly towards the End of Life, (London, 2010) p. 62; BMA, Advance decisions and proxy decision-making in medical treatment and research, 2007, pp. 3, 5 (http://www.bma.org.uk); Regina (Burke) v. General Medical Council, [2005] 3 WLR 1132 (Court of Appeal, 2005); A. Grubb, “Consent to Treatment: the Competent Patient”, in: A. Grubb and J. Laing (eds.), Principles of Medical Law, (Oxford: Oxford University Press, 2004) pp. 134-135. United States: N.M.P. King, Making Sense of Advance Directives, (Washington: Georgetown University Press, 2007) p. 222; D.J. Doukas and W. Reichel, Planning for Uncertainty. Living Wills and Other Advance Directives for You and Your Family, (Baltimore: Johns Hopkins University Press, 2007) p. 10. Canada: B. Sneiderman, “Patients’ Advance (Healthcare) Directives”, in: B. Sneiderman, J.C. Irvine and P.H. Osborne (eds.), Canadian Medical Law. An Introduction for Physicians, Nurses and Other Healthcare Professionals, (Scarborough: Thomson Carswell, 2003) p. 632.


The Netherlands: Moratti, supra note 2, p. 372; Lelie and Verweij, supra note 2, p. 31; J.H. Hubben, “Enkele juridische aspecten van medisch zinloos handelen”, Pro Vita Humana (5) (2000) 137-138. United States: N.S. Jecker and L.J. Schneiderman, “Judging medical futility: an ethical analysis of medical power and responsibility”, Cambridge Q. Healthcare ethics (4) (1995) 32; Menikoff, supra note 13, pp. 1091-1126. See also S.H. Miles, “Informed demand for “non-beneficial” medical treatment”, N.Eng.J.Med. (325) (1991) 515; Truog et al., supra note 2, p. 1563, in which a social consensus is put forward.


United States: Levine, supra note 2, pp. 103-104; Shiner, supra note 11, pp. 846-847. See also article 166.046 Texas Health and Safety Code (An ethics or medical committee must confirm that treatment would be ‘inappropriate’); J.F. Daar, “A clash at the bedside: patient autonomy v. a physician’s professional conscience”, Hastings L.J. (44) (1993) 1241-1289 (Duty to consult a ‘treatment evaluation board’) and Causey v. St. Francis Medical Center, 719 So.2d 1072, 1076 (Louisiana Court of Appeal, 1998).


The Netherlands: Gevers (2000), supra note 28, pp. 221-226. E.g. Gerechtshof Arnhem 31 oktober 1989, TvGR 1990, 79 (Case of Stinnissen).


D. Murphy, “Do-not-resuscitate orders: time for reappraisal in long-term-care institutions”, JAMA (260) (1988) 2098-2101; Hooghiemstra, supra note 24, p. 274.


R.L. Fine and T.W. Mayo, “Resolution of futility by due process: early experience with the Texas Advance Directives Act”, Ann.Intern.Med. (138) (2003) 743-746; M.L. Smith, G. Gremillion, J. Slomka and C.L. Warneke, “Texas hospitals’ experience with the Texas Advance Directives Act”, Crit. Care Med. (35) (2007) 1271-1276; Hudson v. Texas Children’s Hospital, 177 S.W.3d 232 (Texas Court of Appeals, 2005).


The Netherlands: CAL, supra note 27, p. 209. England: points 5.34, 5.43-5.44, 9.5 Code of Practice Mental Capacity Act; E. Jackson, Medical Law. Text, Cases and Materials, (Oxford: Oxford University Press, 2006) p. 222; G.R. Ashton, P. Letts, L. Oates and M. Terrell, Mental Capacity: the New Law, (Bristol: Jordan Publishing Limited, 2006) pp. 200-201; P. Bartlett and R. Sandland, Mental Health Law, (Oxford: Oxford University Press, 2007) p. 570; Regina (Burke) v. General Medical Council, [2005] 3 WLR 1132 (Court of Appeal, 2005); A. Grubb, “The persistent vegetative state: a duty (not) to treat and conscientious objection”, Eur.J. Health L. (4) (1997) 172; P. Wilson, “The Law Commission’s report on mental incapacity: medically vulnerable adults or politically vulnerable law?”, Med.L.Rev. (4) (1996) 237.


The Netherlands: Gevers (1991), supra note 24, p. 414. United States: Truog et al., supra note 2, pp. 1562-1563; Kasman, supra note 2, p. 1054; Shiner, supra note 11, p. 846; Causey v. St. Francis Medical Center, 719 So.2d 1072, 1074-1075 (Louisiana Court of Appeal, 1998).


Belgium: Delbeke, supra note 1, no. 1396. England: Regina (Burke) v. General Medical Council, [2005] 3 WLR 1132, 1147 (Court of Appeal, 2005).


Moratti, supra note 2, p. 369; Gomez, supra note 31, pp. 361-396; King, supra note 33, p. 222; Meisel and Cerminara, supra note 1, pp. 13-25-26; Sneiderman (1999), supranote 27, pp. 205-231.


Meisel and Cerminara, supra note 1, pp. 13-15; T. Grisso and P.S. Appelbaum, Assessing Competence to Consent to Treatment. A Guide for Physicians and Other Health Professionals, (New York: Oxford University Press, 1998) p. 155; C. Gastmans, M. Lemiengre, L. Vanlaere and J. Lemiengre, “Medische interventies afbouwen bij een terminaal zieke oudere”, Huisarts Nu (35) (2006) 321.


Moore, supra note 5, p. 433 f.f.


See for instance Rowland, supra note 2, p. 292; Mcardle, supra note 11, p. 70 f.f.


In the same sense: F. Ackerman, “The significance of a wish”, Hastings Center Report (21) (1991) 27-29; Shiner, supra note 11, pp. 811-812, 840.


See e.g. Waisel and Truog, supra note 10, pp. 304-308.


As suggested by Shiner, supra note 11, p. 846.


As suggested by Daar, supra note 37, pp. 1241-1289 (‘treatment evaluation board’). See also article 166.046 Texas Health and Safety Code (‘a medical or ethics committee’).


K.M. Boozang, “Death wish: resuscitating self-determination for the critically ill”, Ariz.L.Rev. (35) (1993) 23-85; Mcardle, supra note 11, pp. 69-70; Gampel, supra note 8, pp. 92-104; Kwiecinski, supra note 2, pp. 313-355.


Belgium: Cass. 26 juni 2009, NjW 2009, 812, note I. Boone, RW 2009-10, 1522, note H. Nys; T. Vansweevelt, De Civielrechtelijke Aansprakelijkheid van de Geneesheer en het Ziekenhuis, (Antwerp: Maklu, 1997) p. 295 f.f. France: Cass. 7 oktober 1998, JCP 1998, II, 10179, concl. J. Sainte-Rose, note P. Sargos; Cass. 9 oktober 2001, JCP 2002, II, 10045, note O. Cachard.


See also Strasser, supra note 12, pp. 549, 556 (The author argues for a limited interpretation of qualitative futility restricted to permanent unconsciousness); Shiner, supra note 11, pp. 846-847 (Limitation to a clear or obvious disproportionality supported by a medical consensus and a case by case evaluation by a judge).


Veatch and Spicer, supra note 17, p. 25; Shiner, ibid., pp. 842-843; Gampel, supra note 8, pp. 98-99.


Delbeke, supra note 1, no. 1373, no. 1376; Veatch and Spicer, supra note 17, p. 20; Menikoff, supra note 13, p. 1097.


Belgium: Delbeke, supra note 1, no. 1387; advices of the National Council of the Order of Physicians of 11 December 1999 on medical decisions in resting homes, of 22 March 2003 on palliative care, euthanasia and other medical end-of-life decisions and of 27 September 2003 on the reference of a DNR order in the hospital record (http://www.ordomedic.be); Advisory Committee on Bioethics, supra note 19; Tack and Balthazar, supra note 11, pp. 71-72; Nys, supra note 11, pp. 358-359. The Netherlands: Gevers (2005), supra note 27, pp. 352-354; Blijham and Van Delden, supra note 28, pp. 1066-1068; Kuitert, supra note 28, p. 478 (Concerning the patient, the role of the surrogate is much more limited). United States: Veatch and Spicer, supra note 17, pp. 15-36; Cantor (1993), supra note 28, pp. 92-94; J.D. Lantos, P.A. Singer, R.M. Walker e.a., “The illusion of futility in clinical practice”, Am.J.Med. (87) (1989) 81-84; Scofield, supra note 4, pp. 66-70. Canada: Weijer, supra note 30, p. 254.


R. Dworkin, Life’s Dominion. An Argument About Abortion, Euthanasia, and Individual Freedom, (New York: Vintage Books, 1994) p. 199 f.f.


In the same sense: Delbeke, supra note 1, nr. 1407 e.v.; King, supra note 33, pp. 224-227. See also: R. Kruithof, “Tendensen inzake medische aansprakelijkheid”, Vl.T.Gez. (1983) 185 (‘Of ingrepen, zoals esthetische chirurgie, sterilisatie, anticonceptiva, e.d. curatief verantwoord zijn of, indien men het wil, het vereiste noodzakelijkheidskarakter bezitten, hangt in belangrijke mate -zij het niet uitsluitend- af van wat de patiënt daar zelf over denkt’). Not so sure: Meisel and Cerminara, supra note 1, 11 — p. 41 f.f.


See also PF, “The right to require life-prolonging treatment”, Med.L.Rev. (12) (2004) 315-316; P. de Cruz, “The Burke case: the terminally ill patient and the right to life”, Mod.L.Rev. (70) (2007) 316-317. See for some criticism: J.K. Mason and G.T. Laurie, “Personal autonomy and the right to treatment: a note on R (on the Application of Burke) v General Medical Council”, Edin.L.R. (9) (2005) 123-132.


President’s Commission, supra note 32, p. 180. E.g. Barber v. Superior Court, 147 Cal.App.3d 1006, 1021 (California Court of Appeal, 1983). See in general: Meisel and Cerminara, supra note 1, chapter 4.


J.C. Hackler and F.C. Hiller, “Family consent to orders not to resuscitate: reconsidering hospital policy”, JAMA (264) (1990) 1281-1283.


Cantor (1993), supra note 28, p. 95.


In the same sense: Veatch and Spicer, supra note 17, pp. 34-35; Cantor (2001), supra note 11, pp. 185-186.


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