Abstract
Acknowledging the great promise of palliative care management for assuring that the end-of-life becomes a more compassionate experience, this book’s bold thesis advocates the liberal use of sedative medications to relieve refractory distress by the reduction in patient consciousness. Accordingly, palliative sedation therapy must be seen as proper medical treatment and consistent with sound principles of adjusted care which, in turn, should be the standard for all hospice medicine. When a diagnosis and prognosis present the patient as suffering a futile medical condition, and where patient consent or surrogate approval is obtained, compassion directs palliative (or terminal) sedation be offered as efficacious treatment to alleviate intractable physical and existential suffering.
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Notes
Bruce Jennings, True Rynders et al., Access to Hospice Care: Expanding Boundaries, Overcoming Barriers, 33 HASTINGS CENTER RPT. S3 (Special Supplement) (2003).
Id. Current statistics show 5 million Americans are afflicted with dementia and more than 13 million are projected to be diagnosed by 2050. Susan L. Mitchell et al., The Clinical Course of Advanced Dementia 361 NEW ENG. J. MED. 1529, 1536 (Oct. 15, 2009). See generally JONATHAN HERRING, MEDICAL LAW AND ETHICS 506–07 (2nd ed., 2008) (calling for an expansion of palliative care options);
Susan L. Mitchell, et al., Hospice Care for Patients with Dementia. 34 J. PAIN SYMPTOM MGT. 7 (2007).
Id. Indeed, the World Health Organization projects, globally, dementia cases will triple to 115.4 million by 2050. Currently, estimated annual costs of care are set at $604 billion. Frank Jordans, WHO: Dementia Cases Worldwide Will Triple by 2050, WASH. EXAMINER, April 12, 2012, at 35.
See Greg A. Sachs, Dying from Dementia, 361 NEW ENG. J. MED. 1595 (2009).
Kelly Kennedy, Medicare Costs for Hospice up 70%, USA TODAY, Aug. 8, 2011, at 1.
See generally Nancy J. Knauer, Aging in the United States: Re-thinking Justice, Equality, and Identity Across the Lifespan, 21 TEMP. POL. & CIV. RTS. L. REV. 305 (2012).
42 C.F.R. 4418.22(b) (2010). See Ezekiel J. Emanuel, Better, if not Cheaper, Care, N.Y. TIMES, Jan. 4. 2013, at A21 (suggesting a revision of the rules for admission to hospice—with an emphasis on a patient’s need for specialized care rather than length of anticipated life). See also Sachs, supra note 7, positing that end-stage dementia be treated only by palliative care; Pasman et al., infra Ch. 4 note 78, regarding limitations on providing nutrition and hydration to nursing home patients with this condition.
See http://www.medicare.gov/publications/Pubs/pdf/02154.pdf (accessed Sept. i, 2011). Current updates may be found at www.medicare.govt. Medicare provides coverage for two 90 day periods of hospice care— followed by an unlimited number of 60 day periods. The cap for this care is $6,500, adjusted for inflation or deflation. 42 C.F.R. §418.309 (2010). In 2012, the Medicare program paid a base rate of $151 per day to cover all routine hospice services—adjusted, as such, for geographic differences. Melissa D. Aldridge Carlson et al., Hospices’ Enrollment Policies May Contribute to Underuse of Hospice Care in the United States, 31 J. HEALTH AFFAIRS 2690 (2013).
Fiona Randall and Robin S. Downie, Palliative Care Ethics: A Good Companion, 117 (1996). See Stein Kaasa and Jon H. Loge, Quality of Life in Palliative Care: Principles and Practice, 17 Palliative Med. 11 (2003).
Randall and Downie, id. at 118. It has predicted that 1 million Britons will become victims of dementia by 2023. Presently, the cost of the health and social care for each patient afflicted with dementia is £13.000 per year. Daniel Martin, Dementia Timetable, The Daily Mail, Feb. 4, 2010, at 12.
Evan Thomas, infra, note 36. The poll taken by The Regence Foundation and the National Journal (supra note 19) found—contrary to the political stance taken by Congress on advance planning conversations—that three out of four Americans (or 78% of those polled) were not only interested in being more educated to end-of-life medical treatment options but thought this topic should be a priority for the U.S. health care system and covered by both Medicare and by private insurance. See http://www.getpalliativecare.org/; Matthew DoBias, No Death Panels, Please, But Poll Shows Americans Can Handle End-of-Life Care, Nat’l Journal, Mar. 8, 2011, http://nationaljournal.com/healthcare/no-deathpanels-please-but-poll-shows-americans-c …
See generally Abigail R. Moncrief, The Freedom of Health, 159 Pa. L. Rev. 2210 at 2238–41 (2011).
Robert Pear, U.S. Alters Rule on Paying End-of-Life Planning, N.P. Times, Jan. 4, 2011, at A15.
American Academy of Nursing, id. See Maria J. Silveira et al., Advance Directives and Outcomes of Surrogate Decision Making before Death, 362 New Eng. J. Med. 1211 (April 1, 2010);
Annette Rid and David Wendler, Can We Improve Treatment Decision-Making for Incapacitated Patients?, 40 Hastings Center Rpt. 36 (2010).
Sandra L. Ragan, et al., The Communication of Palliative Care for The Elderly Cancer Patient, 15 Health Communication 219 (2003).
Id. See Kathleen Tschantz and Diane E. Meier, Palliative Care and Hospice: Opportunities to Improve Care for the Sickest Patients, 25 Notre Dame J. L. Ethics & Pub. Pol’y, 413 (2011).
Joanne Kenen, A New Focus on Easing the Pain: Palliative Care Helps The Very Ill. It May Also Keep Costs Down, Wash. Post, July 3, 2007, at F1.
Timothy E. Quill, Physician-Assisted Death in the United States: Are the Existing ‘Last Resorts’ Enough? 38 Hastings Center Rpt. 17 (Sept.-Oct. 2008).
Kenen supra, note 33. See Theresa Brown, Looking for a Place to Die, N.Y. Times, Dec. 22, 2011, at A33 (discussing issues associated with moving from a hospital ICU to in-patient hospice care or patient home care); Klein, supra note 28.
Quill, supra note 34. While approximately 70% of Americans wish to die at home, about half die in hospitals; and although hospice or palliative care is available to those suffering from terminal illness, practically, most get only a few weeks of this care. Evan Thomas, The Case for Killing Granny: Re-Thinking End-of-Life Care, Newsweek, Sept. 21, 2009, at 34, 40.
Home hospice care is the standard. Michelle Andrews, Hospice providers may have financial reasons to discourage the enrollment of certain patients, WASH. POST, Jan. 22, 2013 at E4.
Eleanor Clift, Hospice and The End Game, 30 HEALTH AFFAIRS 1606, 1609 (Aug. 2011).
One recent study of four New York State hospitals found well-established palliative care-teams for Medicaid patients reduced in-patient costs and time spent in intensive-care units by $6,900.00 per admission. R. Sean Morrison et al., Palliative Care Consultant in Teams Cut Hospital Costs for Medicaid Beneficiaries, 30 HEALTH AFFAIRS 454 (Mar. 2011).
Kenen, supra note 33. See PALLIATIVE CARE: TRANSFORMING THE CARE OF SERIOUS ILLNESS (Diane E. Meier et al., eds. 2010); David Hui et al., Availability and Integration of Palliative Care at U.S. Cancer Centers, 303 JAMA 1054 (Mar. 17, 2010).
Rob Stein, Wide Disparities are found in End-Stage Cancer Treatment, WASH. POST, Nov. 17, 2010, at A7.
Id. But see Elizabeth Trice Loggers, Helene Stacks et al., Implementing a Death with Dignity Program at a Comprehensive Cancer Center, 368 NEW ENG. J. MED. 1417 (April ii, 2013) (comparing the successful programs of this nature in Oregon and Washington).
Id. But see Kellen F. Rodriguez, Suing Health Care Providers for Saving Lives: Liability for Providing Unwanted Life-Sustaining Treatment, 20 J. LEGAL MED. 1 (1999).
Courtney S. Campbell and Jessica Cox, Hospice and Physician-Assisted Death: Collaboration, Compliance, and Complicity, 40 HASTINGS CENTER RPT. 26, 34 (Sept.—Oct. 2010).
ORE. REV. STAT., §§ 127.800(12), 127.805 (2009). The other state with comparable legislation is Washington. See REV. CODE WASH. ANN., Ch. 70, 245 (2009). Vermont passed similar legislation May 13, 2013. i8 VT. STAT. ANN. Ch. 113, §528i. A ballot initiative in Massachusetts which would have followed the legislation in Oregon and Washington on death assistance was defeated. Carolyn Johnson, Assisted Suicide Measure Narrowly Defeated; Supporters Concede Defeat, THE BOSTON GLOBE, Nov. 7, 2012, at http://www.boston.com/2012/11/07/dying/gBqan95E7zK3elChciPBOP/story.html. See Ch. 5, infra, notes 5–7.
Arthur G. Lipman, Pain as a Human Right: The 2004 Global Day Against Pain, 19 J. PAIN & PALLIATIVE CARE PHARMACOTHERAPY 85 (2005).
Id. See Laura Thomas et al., Access to Pain Treatment and Palliative Care: A Human Rights Analysis, 24 TEMP. INT’L. & COMP. L. J. 365 (2010).
In the U.S., the American Pain Foundation is the largest non-profit advocacy group for pain patients working as such to preserve access to drugs without making patients being made to feel as though they are criminals and to combat notions that opiod addition is rampant especially among the terminally ill. Charles Ornstein and Tracy Weber, Success of Pain Killer Funds Patient Advocacy Group, Probe Finds, WASH. POST, Dec. 25, 2011, at A4. The web page for the Pain Foundation is: http://www.painfoundation.com.
Access to Hospice Care: Expanding Boundaries, Overcoming Boundaries, 33 HASTINGS CENTER RPT. S 50 (Mar.-Apri1, 2003). Statistics showed in 2010 that $8.5 billion worth of narcotic pain killers were sold in the U.S.—this, being enough prescription drugs to “medicate every American around the clock” for a month—and, thus, fuel concerns that there is a drug “epidemic.” Ornstein and Weber, supra note 62. See Catherine Saint Louis, E.R. Doctors Face Dilemma on Painkillers, NEW YORK TIMES, May 21, 2012, at D1;
Barry Meier, Tightening the Lid on Pain Prescription, WASH. POST, April 9, 2012, at 12 (detailing how there are more and more state laws—and especially in Washington—being enacted to control the grossly over prescribed practice of treating with opiods for long-term pain, from back injuries and other non cancerous conditions, by first requiring patients taking these drugs to consult pain specialists to learn whether there are alternative approaches to pain abatement); Ch. 5, infra, note 71.
See also Timothy W. Martin, Nurses Seek Expanded Role: Specialists in Anesthesia Want to Treat Chronic Pain; Critics Warn of Drug Abuse, WALL ST. J. Oct. 3, 2012, at A3 (reporting on the Centers for Medicare and Medical Services issuance of a new guideline allowing nurse anesthetists to be directly reimbursed by Medicare for evaluating, diagnosing, and treating pain with epidural injects of prescription painkillers or opioids thereby responding to the public demand for greater access to medication for chronic pain). This new rule, 42 C.F.R 410.69(b), became effective January i, 2013. Reimbursements allowed under it are conditioned, however, by individual state scope of practice laws (77 Fed. Reg. 69006). Some 24 states allow nurse anesthetists to provide some level of chronic pain treatment. Id.
Manish Agrawal and Ezekiel J. Emmanuel, Attending to Psychologic Symptoms and Palliative Care, 20 J. CLINICAL ONCOLOGY 624 (Feb. 1, 2001).
Id. See generally Paul Arnstein, et al., Self Efficacy as a Mediator of The Relationship between Pain Intensity, Disability and Depression in Chronic Pain Patients, 80 PAIN 483 (1999).
Put simply, the dying “do not have the luxury of clearly separating their physical suffering from their psychological, spiritual, an existential suffering.” Timothy E. Quill and Margaret P. Battin, Excellent Palliative Care as The Standard, Physician Assisted Dying as a Last Resort, at 323 in PHYSICIAN-ASSISTED DYING, (Timothy E. Quill and Margaret P. Battin eds. 2004).
Ingrid Bolmsjo, et al., Meeting-Existential Needs in Palliative Care—Who, When, and Why?, 18 J. PALLIATIVE CARE 185 (2002).
William Breitbart, et al., Psychotherapeutic Interventions at The End of Life: A Focus on Meaning and Spirituality, 49 CAN. J. PSYCHIATRY 336 (June, 2004).
Breitbart et al., supra note 78 at 371. See Arthur Kleinman, From Illness as Culture to Caregiving as Moral Experience, 368 NEW ENG. J. MED. 1376 (April 2013).
Helene Stacks et al., Why Now? Timing and Circumstances of Hastened Deaths, 30 J. PAIN & SYMPTOM MGT. 216 (Sept. 2005).
G. Van der Wal and R. J. M. Dillman, Euthanasia in The Netherlands, 308 BR. MED. J. 1346 (1994).
Richard B. Gunderman, Is Suffering the Enemy?, 32 HASTINGS CENTER RPT. 40, 42 (Mar.–April 2002).
Karel E. Miller, et al., Anti depressant Medication Use in Palliative Care, 23 AM. J. HOSPICE & PALLIATIVE MED. 127 (Mar.–April 2006).
Id. Some other earlier studies have, however, shown that a number of terminally ill cancer patients have—indeed—received sedation for psychological or mental agonies. Tatsuya Morita, et al., Terminal Sedation for Existential Distress, 17 AM. J. HOSPICE & PALLIATIVE CARE 189, n’s 4, 6–8. A 1996 study done of experts on sedation in the U.K. and America found that in 22% of cases evaluated, sedation was administered because of patient “anguish” and in 16% of cases, it was undertaken because of the “emotional, psychological [or] spiritual distress” of those patients. Susan Chater, et al., Sedation for Intractable Distress in the Dying—a Survey of Experts, 12 PALLIATIVE MED. 255 (1998).
Arthur G. Lipman, The Scream by Edvard Munch: A Profound Portrayal of Existential Pain, 19 J. PAIN & PALLIATIVE CARE PHARMACOTHERAPY 1, 2 (2005).
Stan Van Hooft, The Meanings of Suffering, 28 HASTINGS CENTER RPT. 13 (1998). Seegenerally STANLEY HAUERWAS, GOD, MEDICINE AND SUFFERING, Chs. II, III (1990).
Seth M. Holmes, et al., Screening the Soul: Communication Regarding Spiritual Concerns Among Primary Care Physicians and Seriously Ill Patients Approaching the End of Life, 23 AM. J. HOSPICE & PALLIATIVE MED. 25, 30 (2006).
Alton Hart, Jr., et al., Hospice Patient’s Attitudes Regarding Spiritual Discussion with Their ponors, 20 AM. J. HOSP. PALLIATIVE CARE 135 (2003).
Holmes et al., supra note 98. See generally Alan B. Astrow and Daniel P. Sulmasy, Spirituality and The Patient-Physician Relationship, 291 JAMA 2884 (2004).
Paul Rousseau, Existential Suffering and Palliative Sedation: A Brief Commentary with a Proposal for Clinical Guidelines, 18 AM. J. HOSPICE & PALLIATIVE CARE 151 (May/June 2001).
See James Halenbeck, Terminal Sedation for Intractable Distress: Not Slow Euthanasia but a Prompt Response to Suffering, 171 WESTERN J. MED. 222 (Oct. 1999).
Bernard Lo and Gordon Rubenfeld, Palliative Sedation in Dying Patients: ‘We Turn to it When Everything Else Hasn’t Worked’, 294 JAMA 1810, 1811 (Oct. 12, 2005).
See generally Joseph W. Shega, et al., Patients Dying with Dementia: Experience at the End of Life and Impact on Hospice Care, 35 J. PAIN SYMPTOM MGT. 499 (2008) (conducting a study that showed patients with dementia who enroll in hospice programs may experience better end-of-life care, though certain “nontreatable” symptoms still persist and cause the majority of distress for patients).
Tatsuya Morita, et al., Definition of Sedation for Symptom Relief: A Systematic Literature Review and a Proposal for Operational Criteria, 24 J. PAIN & SYMPTOM MGT. 447 (Oct. 4, 2002).
Rousseau, supra note 101; P.C. Rousseau, Dying and Terminal Sedation, 7 CLIN. GERIATRICS 19 (1999).
David W. Kissane, The Contribution of Demoralization to End of Life Decisionmaking, 34 HASTINGS CENTER RPT. 21, 24 (July–Aug., 2004).
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Smith, G.P. (2013). Broadening the Boundaries of Palliative Medicine. In: Palliative Care and End-of-Life Decisions. Palgrave Pivot, New York. https://doi.org/10.1057/9781137377395_1
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