The Past, Present, and Future of Advance Directives as a Guide to End-of-Life Decision Making
2012; Elsevier BV; Volume: 141; Issue: 1 Linguagem: Inglês
10.1378/chest.11-2744
ISSN1931-3543
Autores Tópico(s)Ethics and Legal Issues in Pediatric Healthcare
ResumoDecisions to forego life-sustaining therapy occur every day in modern ICUs.1Prendergast TJ Claessens MT Luce JM A national survey of end-of-life care for critically ill patients.Am J Respir Crit Care Med. 1998; 158: 1163-1167Crossref PubMed Scopus (529) Google Scholar Younger practitioners may find it hard to believe that until recently, dying and permanently unconscious patients lacked the fundamental right to refuse unwanted treatments. It was not until the 1970s that landmark court decisions established the right of families to make end-of-life decisions for decisionally impaired loved ones.2Luce JM A history of resolving conflicts over end-of-life care in intensive care units in the United States.Crit Care Med. 2010; 38: 1623-1629Crossref PubMed Scopus (75) Google Scholar Nowadays, families routinely make decisions for relatives, many of whom are cognitively impaired, elderly, and dying.3Silveira MJ Kim SY Langa KM Advance directives and outcomes of surrogate decision making before death.N Engl J Med. 2010; 362: 1211-1218Crossref PubMed Scopus (963) Google Scholar Decision making has evolved into a complex process with varying degrees of responsibility shared by families and physicians.4Truog RD Campbell ML Curtis JR American Academy of Critical Care Medicine et al.Recommendations for end-of-life care in the intensive care unit: a consensus statement by the American College [corrected] of Critical Care Medicine.Crit Care Med. 2008; 36: 953-963Crossref PubMed Scopus (760) Google Scholar, 5Sulmasy DP Snyder L Substituted interests and best judgments: an integrated model of surrogate decision making.JAMA. 2010; 304: 1946-1947Crossref PubMed Scopus (115) Google Scholar Unfortunately, surrogate decision making puts families in a difficult position.5Sulmasy DP Snyder L Substituted interests and best judgments: an integrated model of surrogate decision making.JAMA. 2010; 304: 1946-1947Crossref PubMed Scopus (115) Google Scholar Decisions are often required in the context of severe emotional distress and are often followed by guilt and self-doubt.6Wendler D Rid A Systematic review: the effect on surrogates of making treatment decisions for others.Ann Intern Med. 2011; 154: 336-346Crossref PubMed Scopus (463) Google Scholar, 7Pochard F Azoulay E Chevret S French FAMIREA Group et al.Symptoms of anxiety and depression in family members of intensive care unit patients: ethical hypothesis regarding decision-making capacity.Crit Care Med. 2001; 29: 1893-1897Crossref PubMed Scopus (538) Google Scholar Uncertainty about patients' preferences undoubtedly contributes to surrogates' distress.8Sulmasy DP Terry PB Weisman CS et al.The accuracy of substituted judgments in patients with terminal diagnoses.Ann Intern Med. 1998; 128: 621-629Crossref PubMed Scopus (259) Google Scholar In 1990, the Patient Self-Determination Act was passed to promote the use of advance directives (ADs).9Silveira MJ DiPiero A Gerrity MS Feudtner C Patients' knowledge of options at the end of life: ignorance in the face of death.JAMA. 2000; 284: 2483-2488Crossref PubMed Scopus (165) Google Scholar When employed appropriately, ADs can ensure respect for patients' preferences when they cannot speak for themselves, particularly wishes to forego unwanted treatments in the setting of terminal illness or permanent unconsciousness.3Silveira MJ Kim SY Langa KM Advance directives and outcomes of surrogate decision making before death.N Engl J Med. 2010; 362: 1211-1218Crossref PubMed Scopus (963) Google Scholar Most ADs include two components: (1) a “living will,” which provides specific care instructions, and (2) designation of a health-care proxy (usually a family member) to make decisions. In many ways, ADs have proved disappointing as a decision tool. Patients, families, and caregivers often misunderstand their meaning and intent.9Silveira MJ DiPiero A Gerrity MS Feudtner C Patients' knowledge of options at the end of life: ignorance in the face of death.JAMA. 2000; 284: 2483-2488Crossref PubMed Scopus (165) Google Scholar, 10Upadya A Muralidharan V Thorevska N Amoateng-Adjepong Y Manthous CA Patient, physician, and family member understanding of living wills.Am J Respir Crit Care Med. 2002; 166: 1430-1435Crossref PubMed Scopus (67) Google Scholar Procedural requirements (such as the need for signatures and witnesses), cost, confusing language, cultural insensitivity, and limited foreign language availability often limit their utility.11Castillo LS Williams BA Hooper SM Sabatino CP Weithorn LA Sudore RL Lost in translation: the unintended consequences of advance directive law on clinical care.Ann Intern Med. 2011; 154: 121-128Crossref PubMed Scopus (87) Google Scholar, 12Perkins HS Controlling death: the false promise of advance directives.Ann Intern Med. 2007; 147: 51-57Crossref PubMed Scopus (291) Google Scholar Living wills depend on the naive assumption that patients' wishes are stable, that future medical decisions can be planned in advance, and that relatives and clinicians will know how to interpret specific provisions in the context of complex situations.11Castillo LS Williams BA Hooper SM Sabatino CP Weithorn LA Sudore RL Lost in translation: the unintended consequences of advance directive law on clinical care.Ann Intern Med. 2011; 154: 121-128Crossref PubMed Scopus (87) Google Scholar, 12Perkins HS Controlling death: the false promise of advance directives.Ann Intern Med. 2007; 147: 51-57Crossref PubMed Scopus (291) Google Scholar, 13Sudore RL Fried TR Redefining the “planning” in advance care planning: preparing for end-of-life decision making.Ann Intern Med. 2010; 153: 256-261Crossref PubMed Scopus (627) Google Scholar Given these shortcomings, it is not surprising that only a minority of eligible patients complete ADs.12Perkins HS Controlling death: the false promise of advance directives.Ann Intern Med. 2007; 147: 51-57Crossref PubMed Scopus (291) Google Scholar Against this backdrop, we were delighted to read attorney Robert S. Olick's14Olick RS Defining features of advance directives in law and clinical practice.Chest. 2012; 141: 232-238Abstract Full Text Full Text PDF PubMed Scopus (19) Google Scholar insightful discussion of ADs in this issue CHEST (see page 232). Olick's welcome review should be immensely valuable to clinicians involved in end-of-life decision making. His synopsis succinctly describes the legal history and defining features of ADs, emphasizing their importance in the service of the principle of prospective autonomy, which dictates that patients' wishes be honored when they can no longer speak for themselves. To support prospective autonomy, ADs impose ethical and legal obligations on proxies, physicians, and hospitals to honor patients' wishes. Olick's review14Olick RS Defining features of advance directives in law and clinical practice.Chest. 2012; 141: 232-238Abstract Full Text Full Text PDF PubMed Scopus (19) Google Scholar expertly dissects what he terms the four “rubrics” governing ADs: their formal requirements, how decisional capacity is determined and when ADs should take effect, the rights and responsibilities of proxies and health-care providers, and the scope and limitations of decisions to forego life-sustaining therapy. In addition to reviewing the common legal components of ADs, Olick14Olick RS Defining features of advance directives in law and clinical practice.Chest. 2012; 141: 232-238Abstract Full Text Full Text PDF PubMed Scopus (19) Google Scholar highlights surprising features that vary between states. For example, rules about who can serve as a proxy and which therapies can be legally withheld may vary, so that ADs executed in one state may not be honored in another. As previous authors have done, Olick14Olick RS Defining features of advance directives in law and clinical practice.Chest. 2012; 141: 232-238Abstract Full Text Full Text PDF PubMed Scopus (19) Google Scholar emphasizes the limited value of living wills and correctly highlights the importance of appointing a proxy, which promotes flexibility and discretion. Finally, Olick14Olick RS Defining features of advance directives in law and clinical practice.Chest. 2012; 141: 232-238Abstract Full Text Full Text PDF PubMed Scopus (19) Google Scholar highlights important, unsettled issues, such as the role proxies should play in conditions other than terminal illness and permanent unconsciousness, and whether a patient's decision-making capacity should be considered variable, depending upon the specific treatment choice being addressed. Approaches to advance care planning continue to evolve, with new approaches seeking better ways to help families honor the wishes of decisionally impaired loved ones. Recent proposals suggest shifting the focus from specific therapies to longitudinal discussions of general preferences and values, intended to place families in the best position to make “in the moment decisions” when needed.13Sudore RL Fried TR Redefining the “planning” in advance care planning: preparing for end-of-life decision making.Ann Intern Med. 2010; 153: 256-261Crossref PubMed Scopus (627) Google Scholar A peculiar feature of ADs is that they are designed to prevent care that most patients do not want: When asked, few patients would choose invasive therapies if severe cognitive impairment were the likely outcome.15Fried TR Bradley EH Towle VR Allore H Understanding the treatment preferences of seriously ill patients.N Engl J Med. 2002; 346: 1061-1066Crossref PubMed Scopus (1095) Google Scholar In many ways, ADs seem like a relic of an earlier time, when withdrawing life support was rare, because so many physicians thought foregoing treatment was illegal and unethical.2Luce JM A history of resolving conflicts over end-of-life care in intensive care units in the United States.Crit Care Med. 2010; 38: 1623-1629Crossref PubMed Scopus (75) Google Scholar Fortunately, professional practice, ethics, and the law have evolved substantially since then, so that today, stopping life support in dying patients is almost routine.1Prendergast TJ Claessens MT Luce JM A national survey of end-of-life care for critically ill patients.Am J Respir Crit Care Med. 1998; 158: 1163-1167Crossref PubMed Scopus (529) Google Scholar, 4Truog RD Campbell ML Curtis JR American Academy of Critical Care Medicine et al.Recommendations for end-of-life care in the intensive care unit: a consensus statement by the American College [corrected] of Critical Care Medicine.Crit Care Med. 2008; 36: 953-963Crossref PubMed Scopus (760) Google Scholar Instead of being distressed by requests to forego treatment, physicians are now more likely to raise concern about demands for futile treatment. In turn, this has spawned legislation allowing physicians to withhold the very therapies ADs were originally intended to prevent.16Fine RL Mayo TW Resolution of futility by due process: early experience with the Texas Advance Directives Act.Ann Intern Med. 2003; 138: 743-746Crossref PubMed Scopus (105) Google Scholar It is a persistent oddity of our medical system is that we expend so much effort trying to keep ourselves from using invasive technologies to treat dying and permanently unconscious patients. Thoughtful contributions like Olick's14Olick RS Defining features of advance directives in law and clinical practice.Chest. 2012; 141: 232-238Abstract Full Text Full Text PDF PubMed Scopus (19) Google Scholar give us hope for continued progress in our efforts to respect the wishes of patients unable to speak for themselves. /cms/asset/8e9e68c9-c06e-453c-a513-ca4d3d86e2d0/mmc1.mp3Loading ... Download .mp3 (23.99 MB) Help with .mp3 files Supplementary audioThe Role of Advance Directives in Aiding End-of-Life Decision MakingDuration: 52:23 minModerator: D. Kyle Hogarth, MD, FCCP, Podcast Editor, CHESTParticipants: Robert S. Olick, JD, PhD; Mark D. Siegel, MD, FCCP
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