Portal de Periódicos da CAPES

The Campaign to Deny Terminally Ill Patients Information and Choices at the End of Life

2009; Taylor & Francis; Volume: 30; Issue: 4 Linguagem: Inglês

10.1080/01947640903356183

1521-057X

Kathryn L. Tucker,

Reproductive Health and Technologies

Click to increase image sizeClick to decrease image size Notes 1Religious Coalition for Reproductive Choice, The Medical Right: Remaking Medicine in Their Image (2007), available at http://www.rcrc.org/pdf/MedicalRight_fullreport.pdf (last visited May 12, 2009) [hereinafter Report]. 2 Id. 3Dispensing of Controlled Substances to Commit Suicide, Att'y Gen. Order No. 2534-2001, 66 Fed. Reg. 56,607 (Nov. 9, 2001), codified at 21 C.F.R. pt. 1306. 4Or. Rev. Stat. § § 127.800-127.995 (2005). 5Oregon v. Ashcroft, 192 F. Supp. 2d 1077, 1092 (D. Or. 2002), aff'd, 368 F.3d 1118 (9th Cir. 2004), aff'd sub nom. Gonzales v. Oregon, 546 U.S. 243 (2006). See generally Kathryn Tucker, U.S. Supreme Court Ruling Preserves Oregon's Landmark Death with Dignity Law, 2 NAELA (National Academy of Elder Law Attorneys) J. 291 (2006). 673 Fed. Reg. 50278 (Aug. 26, 2008) (to be codified at 45 C.F.R. pt. 88). 7 Id. 8 Report, supra note 1, at 19. 9This is reflected in the health care reform debate begun in the summer of 2009 by the Obama Administration. Proposed federal legislation that would ensure that terminally ill patients are able to receive counseling about end-of-life options, are able to make their wishes known in various health care directives and physician orders for health care, and physicians are able to receive reimbursement for providing such counseling, was aggressively opposed by the GOP and the Religious Right. See, e.g., Betsy McCaughey, Government Care's Assault on Seniors, WSJ Online, July 23, 2009 (“It ensures that seniors are counseled on end-of-life options,” which this commentator suggests “will pressure the elderly to end their lives prematurely.”). 10Or. Rev. Stat. § § 127.800-127.995 (2005). Implementation was obstructed for several years by a lawsuit arguing that the law denied terminally ill persons equal protection of the laws. The Ninth Circuit dismissed the challenge on the ground that the plaintiffs lacked standing. Lee v. Oregon, 891 F. Supp. 1429 (D. Or. 1995), vacated, 107 F.3d 1382 (9th Cir. 1997). 11David J. Garrow, The Oregon Trail, N.Y. Times, Nov. 6, 1997, at A31; Kim Murphy, Voters in Oregon Soundly Endorse Assisted Suicide, L.A. Times, Nov. 5, 1997, at 1 (noting that 60% of Oregon voters rejected a repeal effort). 12The Dignity Act requires that Oregon collect extensive data about who uses the Dignity Act each year, and to publish the data in annual reports. Or. Rev. Stat. § 127.865 (2005); Or. Dep't of Human Servs., Death with Dignity Act Annual Reports, available at http://oregon.gov/dhs/ph/pas/ar-index.shtml [hereinafter Annual Reports] (last visited May 12, 2009). Ten years of data have been published and closely examined. 13Margaret P. Battin et al., Legal Physician-Assisted Dying in Oregon and the Netherlands: Evidence Concerning the Impact on Patients in “Vulnerable” Groups, 33 J. Med. Ethics 591 (2007); Timothy E. Quill & Christine K. Cassel, Professional Organizations' Position Statements on Physician-Assisted Suicide: A Case for Studied Neutrality, 138 Ann. Intern. Med. 208 (2003); Linda Ganzini et al., Oregon Physicians' Attitudes About and Experiences with End-of-Life Care Since Passage of the Oregon Death with Dignity Act, 285 J.A.M.A. 2363 (2001) (reviewing Oregon's experience with its Death with Dignity Act and concluding no harm occurred to vulnerable populations); Melinda A. Lee & Susan W. Tolle, Oregon's Assisted Suicide Vote: The Silver Lining, 124 Ann. Intern. Med. 267 (1996); Joseph B. Straton, Physician Assistance with Dying: Reframing the Debate; Restricting Access, 15 Temp. Pol. & Civ. Rts. L. Rev. 475, 475 (2006). 14Battin et al., supra note 13, at 591. The American Medical Student Association took note of the Battin findings in reaching its own policy to support aid-in-dying. AMSA Principles, Regarding Physician Aid-in-dying, Resolution D01, Am. Med. Student Ass'n House of Delegates (Mar. 15, 2008) (“WHEREAS the Oregon data showed ‘no evidence of heightened risk for the elderly, women, the uninsured … people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities ….”’ (quoting Battin, supra note 13)). 15 See Daniel E. Lee, Physician-Assisted Suicide: A Conservative Critique of Intervention, 33 Hastings Cen. Rep. 17 (2003). 16 See, e.g., Cen. for Disease Prevention & Epidemiology, Or. Health Div., Dep't of Human Res., Oregon's Death with Dignity Act: The First Year's Experience 7 (1999), available at http://oregon.gov/dhs/ph/pas/docs/year1.pdf (last visited Apr. 26, 2009) (“Patients who chose physician-assisted suicide were not disproportionately poor (as measured by Medicaid status), less educated, lacking in insurance coverage, or lacking in access to hospice care.”); see also Battin et al., supra note 13; Kant Patel, Euthanasia and Physician-Assisted Suicide Policy in the Netherlands and Oregon: A Comparative Analysis, 19 J. Health & Soc. Pol'y 37 (2004) (finding no empirical evidence of a slippery slope in Oregon, but more potential for a slide in the Netherlands). 17Office of Disease Prevention & Epidemiology, Or. Dep't of Human Servs., Eighth Annual Report on Oregon's Death with Dignity Act 12 (2006), available at http://oregon.gov/dhs/ph/pas/docs/year8.pdf (last visited Apr. 26, 2009) [hereinafter Eighth Annual Report]. 18 Id. at 23. 19Or. Pub. Health Div., Or. Dep't of Hum. Servs., Summary of Oregon's Death with Dignity Act 2006 (2007), available at http://oregon.gov/dhs/ph/pas/docs/year9.pdf (last visited Apr. 26, 2009) [hereinafter Ninth Annual Report]. 20Eighth Annual Report, supra note 17, at 4-5. 21Linda Ganzini et al., Physicians' Experiences with the Oregon Death with Dignity Act, 342 New Eng. J. Med. 557, 557 (2000) (finding that the availability of palliative care led some, but not all, patients to change their minds about hastened death). 22 See Ninth Annual Report, supra note 19 (showing number of prescription recipients each year compared to number of deaths from use of prescriptions). 23Robin Lunge et al., Vt. Legislative Council, Oregon's Death with Dignity Law and Euthanasia in the Netherlands: Factual Disputes § 3E (2005), available at http://www.leg.state.vt.us/reports/05Death/Death_With_Dignity_Report.htm (last visited Apr. 22, 2009). 24William McCall, Assisted-Suicide Cases Down in 1904, Columbian (Vancouver, Wa.), Mar. 11, 2005, at C2 (quoting Arthur Caplan, Director, Center for Bioethics, University of Pennsylvania School of Medicine). 25 See Ganzini et al., supra note 13; see also Lee & Tolle, supra note 13, at 268-69; Lawrence J. Schneiderman, Physician-Assisted Dying, 293 J.A.M.A. 501, 501 (2005); Quill & Cassel, supra note 13, at 209. 26Ganzini, supra note 13, at 2363. 27Elizabeth R. Goy et al., Oregon Hospice Nurses and Social Workers' Assessment of Physician Progress in Palliative Care Over the Past 5 Years, 1 Palliative & Supportive Care 215 (2003). 28Kathy L. Cerminara & Alina Perez, Therapeutic Death: A Look at Oregon's Law Legalizing Physician-Assisted Suicide, 6 Psychol. Pub. Pol'y & L. 503, 512–13 (2000) (acknowledging possible negative effects of legalized aid-in-dying, but concluding that the data from Oregon in one year justify an optimistic view); see also Linda Ganzini et al., Experiences of Oregon Nurses and Social Workers with Hospice Patients Who Requested Assistance with Suicide, 347 New Eng. J. Med. 582 (2002) (reporting that nurses and social workers rated desire to control circumstances of death as the most important reason for requesting aid-in-dying); Linda Ganzini et al., Oregon Physicians' Perceptions of Patients Who Request Assisted Suicide and Their Families, 6 J. Palliative Med. 381 (2003) (finding that physicians receiving requests for lethal medication perceive patients as wanting to control their deaths). 29 See, e.g., Washington v. Glucksberg, 521 U.S. 702, 732 (1997) (“We have recognized… the real risk of subtle coercion and undue influence in end-of-life situations.”). 30 See, e.g., Am. Pub. Health Ass'n, Patient Self-Determination at the End of Life (2008), available at http://www.apha.org/advocacy/policy/policysearch/default.htm?id = 1372 (last visited Apr. 24, 2009); Am. Med. Women's Ass'n, Aid-in-Dying (2007), available at http://www.amwa-doc.org/index.cfm?objectId=242FFEF5-D567-0B25-585DC5662AB71DF9 (last visited Apr. 24, 2009) (“AMWA supports the passage of aid-in-dying laws which empower mentally competent, terminally ill patients and protect participating physicians, such as … the Oregon Death with Dignity Act.”); Am. Med. Student Ass'n, Principles Regarding Physician Aid in Dying (2008), available at http://www.amsa.org/about/ppp/pas.cfm (last visited Apr. 24, 2009); Am. Coll. of Legal Med., ACLM Policy on Aid-in-Dying (2008), available at http://www.aclm.org/resources/articles/ACLM%20Aid%20in%20Dying%20Policy.pdf (last visited Apr. 24, 2009) (“The ACLM recognizes patient autonomy and the right of a mentally competent, though terminally ill, person to hasten what might otherwise be objectively considered a protracted, undignified, or painful death.”); see also Jay Cohen, CAPG Supports AB 374: The Compassionate Choices Act, Calif. Ass'n Physician Groups Update, Mar. 2007, at 9, available at http://www.capg.org/docs/capg_update—march_2007.pdf (last visited Apr. 24, 2009) (supporting passage of an Oregon-type aid-in-dying law in California). 31 See generally Wash. Rev. Code § 70.245 (2008). 32These groups include, but are not limited to: Alliance of Catholic Health Care; American Association of People with Disabilities; American Disabled for Attendant Programs Today; Berkeley Commission on Disability; California Catholic Conference; California Disability Alliance; California Medical Association; California Right to Life Committee; Californians for Disability Rights; Disability Rights Education and Defense Fund; National Council on Disability; Not Dead Yet—California Chapter; Redding Christian Medical & Dental Associations; State Council on Developmental Disabilities; Traditional Values Coalition; World Association of Persons with Disabilities; and World Institute on Disability. 33Physician Assisted Dying 245 (Timothy Quill & Margaret Battin, eds. 2004). 34The Catholic Church contributed: $777,782 (53.74% of the opponents' budget) in Washington State in 2008; $1,288,894 (73.9%) in Maine in 2000; $2,173,330 (38.0%) in Michigan in 1998; $1,677,699 (73.6%) in the 1997 Oregon campaign; $968,806 (59.3%) in the 1994 Oregon campaign; $2,199,986 (60.6%) in California in 1992; and $745,951 (64.5%) in Washington in 1991. 35Editorial, Lost Compassion: Cardinal Tars Speaker with “Culture of Death,” Sacramento Bee, Apr. 6, 2007, at B6. 36Jon B. Eisenberg, The Right vs. the Right to Die: Lessons from the Terri Schiavo Case and How to Stop It from Happening Again ix (2006). 37Nat'l Right to Life Committee, Model Starvation & Dehydration of Persons with Disabilities Prevention Act (2006), available at http://www.nrlc.org/euthanasia/modelstatelaw.html (last visited Apr. 24, 2009). 38The Hawaii Catholic Conference Board testified in favor of SB 2928, which would have protected health care providers from civil, criminal, or administrative liability for declining to participate in health care services that violate their consciences, including aid in dying. 39The Executive Director of the Hawaii Family Forum, who testified in “strong support” of Hawaii SB 2928, also testified concurrently as a lobbyist for the Roman Catholic Church. 40However, a representative of the Sisters of St. Francis testified in support of Hawaii SB 2928. 41Indiana Right to Life testified on behalf of Indiana SB 3. That bill provided that a pharmacist may not be required to dispense or sell any drug or medical device, including life-ending medication. The bill passed out of the Senate by a vote of 31 to 18 on January 22, 2008. 42 See, e.g., Ala. H.R. 490 (2008). 43In one study indicating the seriousness of the problem, 17% of the physicians who responded felt they had no obligation to inform patients about palliative sedation nor refer patients to a physician who would be willing to inform them about—and provide—that intervention. Farr A. Curlin et al., Religion, Conscience, and Controversial Clinical Practices, 356 New Eng. J. Med. 593 (2007). 44These bills included: Ala. H.R. 490 (2008), Haw. H.R. 2741 (2008) and S.R. 2928 (2008); Pa. S.R. 1255 (2008); N.Y. S.R. 6644/AB10984 (2008); Okla. S.R. 1878 (2008); and R.I. H.R. 7049 (2008). The Oklahoma bill, SB 1878, was vetoed by the governor, but overridden by two-thirds vote in both House and Senate. 4573 Fed. Reg. 50278 (Aug. 26, 2008) (to be codified at 45 C.F.R. pt. 88). 46 Id. at 50282. 47 See, e.g., Minn. Stat. § 144.651(9) (2007) (“Patients and residents shall be given by their physicians complete and current information concerning their diagnosis, treatment, alternatives, risks, and prognosis as required by the physician's legal duty to disclose.”); Fla. Stat. § 381.026(4)(b)(3) (2008) (“A patient has the right to be given by his or her health care provider information concerning diagnosis, planned course of treatment, alternatives, risks, and prognosis.”); Vt. Stat. Ann. tit. 18, § 1852 (2008) (“Where medically significant alternatives for care or treatment exist, or when the patient requests information concerning medical alternatives, the patient has the right to such information.”); Ketchup v. Howard, 543 S.E.2d 371 (Ga. App. 2000) (“Informed consent essentially involves a medical professional fully informing a patient of the risks of and alternatives to the proposed treatment so that the patient's right to decide is not diminished by a lack of relevant information.”); Schloendorf v. Society of N.Y. Hosp., 105 N.E. 92 (N.Y. 1914). 4842 U.S.C. § 1395dd (2009). 49Maria Silveria et al., Patient's Knowledge of Options at the End-of-life: Ignorance in the Face of Death, 284 J.A.M.A. 2483 (2000). 50J. Randall Curtis et al., Why Don't Patients and Physicians Talk About End-of-Life Care?, 12 J. Gen. Intern. Med. 736, 736-41 (1997); J. Randel Curtis et al., Barriers to Communication for Patients with Acquired Immunodeficiency Syndrome and Their Primary Care Clinicians, 160 Arch. Intern. Med. 1690 (2000). 5174 Fed. Reg. 10207 (Mar. 10, 2009). 52 See generally Christopher Daugherty et al., Hitting You Over the Head: Oncologists' Disclosure of Prognosis to Advanced Cancer Patients, 17 Bioethics 142 (2003). 53Jan C. Hofmann et al., Patient Preferences for Communication with Physicians about End-of-Life Decisions, 127 Ann. Intern. Med. 1 (1997) (finding that fewer than one-fourth of patients had discussed preferences for CPR with their provider); see also J. Andrew Billings, Recent Advances: Palliative Care, 321 Brit. Med. J. 555 (2000); The SUPPORT Investigators, A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients: The Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments (SUPPORT), 274 J.A.M.A. 1591 (1995). 54Silveria et al., supra note 49 (finding that only 41% knew that they could receive enough pain medication to get relief even if this hastened death). 55 Id. (finding that only 46% knew that they could refuse or direct withdrawal of life-prolonging interventions). 56Palliative sedation is the use of medication to induce sedation to relieve a dying patient's severe distress that cannot be controlled despite other aggressive measures. See, e.g., Zev Schuman et al., Implementing Institutional Change: An Institutional Case Study of Palliative Sedation, 8 J. Palliative Med. 666 (2005); Bernard Lo, Palliative Sedation in Dying Patients, 294 J.A.M.A. 1810-16 (2005); Paul C. Rousseau, Terminal Sedation in the Care of Dying Patients, 156 Arch. Intern. Med. 1785 (1996). Many clinicians are reluctant to inform patients about palliative sedation. Farr Curlin et al., Religion, Conscience, and Controversial Clinical Practices, 356 New Eng. J. Med. 593 (2007) (finding that 17% of physicians object to the practice of terminal sedation and do not inform patients about this intervention). 57Jane Brody, In Cancer Therapy, There Is a Time to Treat and a Time to Let Go, N.Y. Times, Aug. 19, 2008, at F7; see also Stephen Connor et al., Comparing Hospice and Nonhospice Patient Survival Among Patients Who Die Within a Three-Year Window, 33 J. Pain & Symptom Mgmt. 238, 242 (2007). 58Alexi Wright, Medical Care and Emotional Distress Associated with Advanced Cancer Patients' End-of-Life Discussions with Their Physicians, J. Clin. Oncol. 26 (2008). 59A.B. 2747, 2007-08 Leg., Reg. Sess. (Cal. 2008). 60Washington v. Glucksberg, 521 U.S. 702, 735 (1997). 61Brief of the American Medical Association as Amici Curiae Supporting Repondents, Glucksberg, 521 U.S. at 702. 62 Unnecessary and Possibly Dangerous, Calif. Catholic Daily, Aug. 28, 2008, available at http://www.calcatholic.com/news/newsArticle.aspx?id=5892851a-1c75-4742-aaeb-25ad4deb8fa2 (last visited Apr. 23, 2009). 63News 10: Early Edition (KGTV-ABC television broadcast), Nov. 13, 2008. 64National Conference of Catholic Bishops, Ethical and Religious Directives for Catholic Health Care Services (ERD No. 24) (4th ed. 2001). 65 Id. at ERD No. 58. 66 Id. at ERD No. 61. 67 Id. at ERD No. 60. 68MergerWatch tracks these mergers and works to ensure that services are not restricted or eliminated following a merger. See generally MergerWatch, Web site at http://www.mergerwatch.org/ (last visited June 4, 2009). 69 See, e.g., Schiavo ex rel. Schindler v. Schiavo, 357 F. Supp. 2d 1378, 1382 (M.D. Fla. 2005). 70Brief for the Americans United for Life as Amici Curiae Supporting Petitioners, Gonzales v. Oregon, 546 U.S. 243 (2006). 71Brief for the Catholic Medical Association as Amici Curiae Supporting Petitioners, Vacco v. Quill, 521 U.S. 793 (1997). 72Brief for the Catholic Medical Association as Amici Curiae Supporting Petitioners, Gonzales, 546 U.S. at 243. 73Brief for the United States Catholic Conference, et al. as Amici Curiae Supporting Petitioners, Glucksberg, 521 U.S. at 702. 74Brief for the Christian Legal Society et al. as Amici Curiae Supporting Petitioners, Vacco, 521 U.S. at 793. 75Brief for the Christian Medical and Dental Society as Amici Curiae Supporting Petitioners, Gonzales, 546 U.S. at 243. 76410 U.S. 959 (1973). 77National Right to Life Committee, Starvation and Dehydration of Persons with Disabilities Act, available at http://www.nrlc.org/euthanasia/modelstatelaw.html. (last visited Apr. 21, 2009). 78RHRealityCheck.com, National Right to Life Committee, available at http://www.rhrealitycheck.org/right/national-right-to-life-committee (last visited Apr. 21, 2009). 79Brief of The National Right to Life Committee, Inc. as Amici Curiae Supporting Petitioners, Glucksberg, 521 U.S. at 702. 80Brief of The National Right to Life Committee as Amici Curiae Supporting Respondents, Cruzan v. Director, Missouri Department of Health, 497 U.S. 261 (1990). 81Brief of American Academy of Medical Ethics as Amici Curiae Supporting Petitioners, Glucksberg, 521 U.S. at 702. 82Brief of American Academy of Medical Ethics as Amici Curiae Supporting Respondents, Conservatorship of Wendland, 28 P.3d 151 (Cal. 2001). 83Brief of American Academy of Medical Ethics as Amici Curiae Supporting Petitioners, Gonzales, 546 U.S. at 243. 84Brief of American Academy of Medical Ethics as Amici Curiae Supporting Respondents, Cruzan, 497 U.S. at 261. 85Brief of Family Research Council as Amici Curiae Supporting Petitioners, Glucksberg, 521 U.S. at 702. 86Family Research Council, available at http://www.frc.org/get.cfm?i=CB05D01 (last visited May 12, 2009). 87Brief of Center for Human Life and Bioethics at the Family Research Council as Amici Curiae Supporting Petitioners, Bush v. Schiavo, 885 So. 2d 321 (Fla. 2004). 88Brief of Focus on the Family and Family Research Council as Amici Curiae Supporting Respondents, Cruzan, 497 U.S. at 261. 89Oregon v. Ashcroft, 2002 WL 32290868 (9th Cir. 2002). 90Brief of the Physicians for Compassionate Care Educational Foundation as Amici Curiae Supporting Petitioners, Gonzales, 546 U.S. at 243. 91Brief of the Not Dead Yet and American Disabled for Attendant Programs Today as Amici Curiae Supporting Petitioners, Vacco, 521 U.S. at 793. 92Brief of the Not Dead Yet and American Disabled for Attendant Programs Today as Amici Curiae Supporting Petitioners, Gonzales, 546 U.S. at 243. 93Brief of the Not Dead Yet and American Disabled for Attendant Programs Today as Amici Curiae Supporting Respondents, Wendland, 28 P.3d at 151. 94Brief of the Not Dead Yet and American Disabled for Attendant Programs Today as Amici Curiae Supporting Petitioners, Schiavo, 885 So. 2d at 321. 95Disability Education Rights & Defense Fund, at http://www.dredf.org/about.shtml/ (last visited June 5, 2009). 96 Id. 97Tax Return, Disability Education Rights & Defense Fund, Statements About Activities (Line #1, Part III) (2007) (on file with author). 98 See generally Disability Education Rights & Defense Fund, at http://www.dredf.org/assisted_suicide/index.html (last visited June 5, 2009). 99A.B. 2747, 2007-08 Leg., Reg. Sess. (Cal. 2008). 100DREDF testimony referred to the well-recognized problem of terminally ill patients not knowing about end-of-life options as a “dubiously established non-problem,” and alleged that the measure would “constrain the communications of doctors and other healthcare providers to their patients in a death-focused direction.” Incomprehensibly, DREDF opposes terminally ill patients having access to information about end-of-life options, expressing concern about “an onslaught of information about end-of-life care” and “a deluge of information.” Letter from DREDF to California Senate, July 5, 2008 (on file with author).