Legal aspects in palliative and end of life care
- Ezekiel J Emanuel, MD, PhD
Ezekiel J Emanuel, MD, PhD
- Vice Provost for Global Initiatives
- University of Pennsylvania
Caring for patients at the end of life is a challenging task that requires not only the consideration of the patient as a whole but also an understanding of the family, social, legal, economic, and institutional circumstances that surround patient care. Unfortunately, there are many myths and misconceptions about what may or may not be ethical and legal in this setting .
In the United States, fear of litigation may prompt unnecessary interventions or hinder clinicians from acting completely ethically in patients with life-threatening illnesses. One study found that as many as 93 percent of clinicians in high-risk medical specialties (ie, emergency medicine, general surgery, orthopedic surgery, neurosurgery, obstetrics/gynecology, and radiology) report practicing defensive medicine such that they did testing beyond what they clinically felt was necessary . Understanding the legal aspects of end of life care should give the practicing clinician the confidence and freedom to act ethically and reasonably. Some of the legal standards regarding end-of-life care in the United States vary by state, but there are specific legal precedents surrounding end-of-life care that generalize. When in doubt, clinicians should consider an ethics consultation, seek legal counsel, or seek assistance from risk management.
This topic review will discuss issues related to legal aspects of end-of-life care that are specific to the United States. These may not apply to outside of the United States although many of the principles are becoming more widely accepted. Ethical issues regarding end of life care, euthanasia and physician assisted suicide, ethics in the intensive care unit, and the effect of religion and spirituality on end of life care are discussed separately. (See "Euthanasia and physician-assisted death" and "Overview of spirituality in palliative care" and "Ethics in the intensive care unit: Informed consent".)
Throughout the history of medicine, a primary responsibility for clinicians has been the care of dying patients. Over centuries, clinicians have developed ethical norms regarding care of the dying including the withdrawal and withholding of life-sustaining treatments.
- Meisel A, Snyder L, Quill T, American College of Physicians--American Society of Internal Medicine End-of-Life Care Consensus Panel. Seven legal barriers to end-of-life care: myths, realities, and grains of truth. JAMA 2000; 284:2495.
- Studdert DM, Mello MM, Sage WM, et al. Defensive medicine among high-risk specialist physicians in a volatile malpractice environment. JAMA 2005; 293:2609.
- Hippocrates. The art. In: Hippocrates: The Loeb classical library, Jones WHS (Ed), Harvard University Press, Cambridge 1923.
- Bigelow J. Self-limited disease: address to the Massachusetts Medical Society, May 27, 1835. In: Nature in disease, Ticknor and Fields, Boston 1854.
- Warren J. Etherization, with surgical remarks, Ticknor & Co, Boston 1848.
- Pope Pius XII. The prolongation of life. In: Ethics in medicine, Reiser SJ, Dyck AJ, Curran WJ (Eds), MIT Press, Cambridge 1997.
- In re Quinlan, 70 N.J. 10 (1976).
- Cruzan v. Director of Missouri Department of Health, 110 S. Ct. 2841 (1990).
- In re Conroy, 98 N.J. 321 (1985).
- Emanuel EJ. A review of the ethical and legal aspects of terminating medical care. Am J Med 1988; 84:291.
- Pabon v. Wright, 459 F. 3d. 241 (2d Cir. 2006).
- Washington v Glucksberg, 117 S. Ct. 2258 (1997).
- Vacco v Quill, 117 S. Ct. 2293 (1997).
- Gonzales v. Oregon, 126 S. Ct. 904 (2006).
- Marson DC, Hawkins L, McInturff B, Harrell LE. Cognitive models that predict physician judgments of capacity to consent in mild Alzheimer's disease. J Am Geriatr Soc 1997; 45:458.
- Silveira MJ, Kim SY, Langa KM. Advance directives and outcomes of surrogate decision making before death. N Engl J Med 2010; 362:1211.
- Hickman SE, Sabatino CP, Moss AH, Nester JW. The POLST (Physician Orders for Life-Sustaining Treatment) paradigm to improve end-of-life care: potential state legal barriers to implementation. J Law Med Ethics 2008; 36:119.
- Beauchamp TL, Childress JF. Principles of Biomedical Ethics, 5th, Oxford, New York 2001.
- Emanuel EJ, Emanuel LL. Proxy decision making for incompetent patients. An ethical and empirical analysis. JAMA 1992; 267:2067.
- Shalowitz DI, Garrett-Mayer E, Wendler D. The accuracy of surrogate decision makers: a systematic review. Arch Intern Med 2006; 166:493.
- Hare J, Pratt C, Nelson C. Agreement between patients and their self-selected surrogates on difficult medical decisions. Arch Intern Med 1992; 152:1049.
- Seckler AB, Meier DE, Mulvihill M, Paris BE. Substituted judgment: how accurate are proxy predictions? Ann Intern Med 1991; 115:92.
- White DB, Braddock CH 3rd, Bereknyei S, Curtis JR. Toward shared decision making at the end of life in intensive care units: opportunities for improvement. Arch Intern Med 2007; 167:461.
- Wendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med 2011; 154:336.
- Cohen AB, Trentalange M, Fried T. Patients with next-of-kin relationships outside the nuclear family. JAMA 2015; 313:1369.
- American Bar Association. Default surrogate consent statutes http://www.americanbar.org/groups/law_aging/resources/health_care_decision_making.html (Accessed on January 02, 2017).
- Alfandre D, Sharpe VA, Berkowitz K. Surrogate Decision Making for Patients Without Nuclear Family. JAMA 2015; 314:407.
- Bravo G, Dubois MF, Wagneur B. Assessing the effectiveness of interventions to promote advance directives among older adults: a systematic review and multi-level analysis. Soc Sci Med 2008; 67:1122.
- Wendland v. Wendland, 110 Cal. Rptr. 2d 412 (2001).
- In re Edna, MF 563 N.W.2d 485 (Wis. 1997).
- In re Martin, 538 N.W.2d 399 (Mich. 1995).
- Schiavo ex rel. Schindler v. Schiavo, 403 F.3d 1289 (11th Cir. 2005).
- Teno JM, Gruneir A, Schwartz Z, et al. Association between advance directives and quality of end-of-life care: a national study. J Am Geriatr Soc 2007; 55:189.
- Miles SH. Informed demand for "non-beneficial" medical treatment. N Engl J Med 1991; 325:512.
- Lynch HF, Mathes M, Sawicki NN. Compliance with advance directives. Wrongful living and tort law incentives. J Leg Med 2008; 29:133.
- Bouvia v. Superior Court, 225 Cal. Rptr. 297 (1986).
- Brophy v. New England Sinai Hospital, 398 Mass. 417 (1986).
- Meisel A. Legal myths about terminating life support. Arch Intern Med 1991; 151:1497.
- Truog RD, Brett AS, Frader J. The problem with futility. N Engl J Med 1992; 326:1560.
- Veatch RM. Why physicians cannot determine if care is futile. J Am Geriatr Soc 1994; 42:871.
- Helft PR, Siegler M, Lantos J. The rise and fall of the futility movement. N Engl J Med 2000; 343:293.
- Curtis JR, Park DR, Krone MR, Pearlman RA. Use of the medical futility rationale in do-not-attempt-resuscitation orders. JAMA 1995; 273:124.
- Shanawani H, Wenrich MD, Tonelli MR, Curtis JR. Meeting physicians' responsibilities in providing end-of-life care. Chest 2008; 133:775.
- Schneiderman LJ, Jecker NS, Jonsen AR. Medical futility: its meaning and ethical implications. Ann Intern Med 1990; 112:949.
- Fine RL, Mayo TW. Resolution of futility by due process: early experience with the Texas Advance Directives Act. Ann Intern Med 2003; 138:743.
- Ramshaw, E. “Bills challenge care limits for terminally ill patients.” Dallas Morning News, February 15, 2007.
- In re Mary Moe, 385 Mass. 555 (1982).
- In re Storar 52 N.Y. 2d 363 (1981).
- Torke AM, Alexander GC, Lantos J. Substituted judgment: the limitations of autonomy in surrogate decision making. J Gen Intern Med 2008; 23:1514.
- Baumrucker SJ, Sheldon JE, Stolick M, et al. The ethical concept of "best interest". Am J Hosp Palliat Care 2008; 25:56.
- The President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to Forego Life-sustaining treatment. U.S. Government Printing Office; Washington, DC 1983.
- Duffy FD. Dialogue: the core clinical skill. Ann Intern Med 1998; 128:139.
- Levinson W, Roter DL, Mullooly JP, et al. Physician-patient communication. The relationship with malpractice claims among primary care physicians and surgeons. JAMA 1997; 277:553.
- Jonsen AR, Siegler M, Winslade WJ. Clinical Ethics, 4th, McGraw-Holl, New York 1998.
- HISTORIC PERSPECTIVE
- THE RIGHT TO REFUSE MEDICAL INTERVENTIONS
- PHYSICIAN-ASSISTED DEATH AND ITS RELATIONSHIP TO WITHHOLDING TREATMENT
- MEDICAL INTERVENTIONS THAT CAN BE STOPPED
- DECISION-MAKING CAPACITY
- Assessing capacity
- SURROGATE DECISION MAKERS
- Family decisions in court
- Methods for making decisions
- - Ordinary and extraordinary care
- - Futile treatments
- - Substituted judgment
- - Best interests
- ADDRESSING DIFFICULT CASES IN END-OF-LIFE CARE
- ADVANCE DIRECTIVES
- EUTHANASIA AND PHYSICIAN ASSISTED DEATH
- COMMUNICATION AND DOCUMENTATION
- INTERNATIONAL PERSPECTIVES
- INFORMATION FOR PATIENTS
- SUMMARY AND RECOMMENDATIONS