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CHAPTER 1 Evolution of the Coronary Care Unit: Past, Present, and Future 10.e1
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REFERENCES
1. Wearn JT. Thrombosis of the coronary arteries, with infarction of the heart. Am J Med Sci. 1923;165:250–276.
2. Parkinson J, Bedford DE. Cardiac infarction and coronary thrombosis. Lancet. 1928;211:4–11.
3. Beck CF, Pritchard WH, Feil HS. Ventricular fibrillation of long duration abolished by electric shock. JAMA. 1947;135:985–986.
4. Beck CF, Weckesser EC, Barry FM, et al. Fatal heart attack and successful defibrillation: new Concepts in Coronary artery disease. JAMA. 1956;161:434–436.
5. Zoll PM, Linenthal AJ, Gibson W, et al. Termination of ventricular fibrillation in man by externally applied electric countershock. N Engl J Med. 1956;254:727–732.
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7. Kouwenhoven WB, Jude JR, Knickerbocker GG. Closed-chest cardiac massage. JAMA. 1960;173:1064–1067.
8. Julian DG. Treatment of cardiac arrest in acute myocardial ischaemia and infarction. Lancet. 1961;2:840–844.
9. Meltzer LE. Coronary units can help decrease deaths. Mod Hosp. 1965;104:102–104.
10. Brown KW, MacMillan RL, Forbath N, et al. Coronary unit: an intensive-care centre for acute myocardial infarction. Lancet. 1963;2:349–352.
11. Day HW. History of coronary care units. Am J Cardiol. 1972;30:405–407.
12. Julian DG. The history of coronary care units. Br Heart J. 1987;57:497–502.
13. Killip T, Kimball JT. Treatment of myocardial infarction in a coronary care unit: a two year experience with 250 patients. Am J Cardiol. 1967;20:457–464.
14. Lown B, Fakhro AM, Hood WB Jr, et al. The coronary care unit: New perspectives and directions. JAMA. 1967;199:188–198.
15. Echt DS, Liebson PR, Mitchell LB, et al. Mortality and morbidity in patients receiving encainide, flecainide, or placebo. The Cardiac Arrhythmia Suppression Trial (CAST). N Engl J Med. 1991;324:781–788.
16. Kantrowitz A, Tjonneland S, Feed PS, et al. Initial clinical experience with intraaortic balloon pumping in cardiogenic shock. JAMA. 1968;203:113–118.
17. Swan HJC, Ganz W, Forrester JS, et al. Cardiac catheterization with a flow-directed balloon-tipped catheter. N Engl J Med. 1970;283:447–451.
18. Koren G, Weiss AT, Hasin Y, et al. Prevention of myocardial damage in acute myocardial ischemia by early treatment with intravenous streptokinase. N Engl J Med. 1985;313:1384–1389.
19. Marshall RM, Blount SG, Genton E. Acute myocardial infarction: Influence of a coronary care unit. Arch Intern Med. 1968;122: 473–475.
20. Hofvendahl S. Influence of treatment in a CCU on prognosis in acute myocardial infarction. Acta Med Scand. 1971;189:285–291.
21. Christensen I, Iverson K, Skouby AP. Benefits obtained by the introduction of a coronary-care unit. Acta Med Scand. 1971;189:285–291.
22. Goldman L, Cook EF. The decline in ischemic heart disease mortality rates: an analysis of the comparative effects of medical interventions and changes in lifestyle. Ann Intern Med. 1984;101:825–836.
23. Stern MP. The recent decline in ischemic heart disease mortality. Ann Intern Med. 1979;91:630–640.
24. Rotstein Z, Mandelzweig L, Lavi B, et al. Does the coronary care unit improve prognosis of patients with acute myocardial infarction? A thrombolytic era study. Eur Heart J. 1999;20: 813–818.
25. Braunwald E. Evolution of the management of acute myocardial infarction: A 20th century saga. Lancet. 1988;352:1771–1774.
26. Fuster V. Myocardial infarction and coronary care units. J Am Coll Cardiol. 1999;34:1851–1853.
27. Jacobs P, Noseworth TW. National estimates of intensive care utilization and costs: Canada and the United States. Crit Care Med. 1990;18:1282–1286.
28. Chalfin DB, Cohen IL, Lambrinos J. The economics and cost-effectiveness of critical care medicine. Intensive Care Med. 1995;21:952–961.
29. Halpern NA, Pastores SM, Greenstein RJ. Critical care medicine in the United States 1985-2000: An analysis of bed numbers, use, and costs. Crit Care Med. 2004;32:1254–1259.
30. Groeger JS, Guntupalli KK, Strosberg M, et al. Descriptive analysis of critical care units in the United States: Patient characteristics and intensive care utilization. Crit Care Med. 1993;21:279–291.
31. Knaus WA, Wagner DP, Zimmerman JE, et al. Variations in mortality and length of stay in intensive care units. Ann Intern Med. 1994;118:753–761.
32. Rogers WJ, Canto JG, Lambrew CT, et al. Temporal trends in the treatment of over 1.5 million patients with myocardial infarction in the US from 1990 through 1999: The National Registry of Myocardial Infarction 1, 2, and. 3. J Am Coll Cardiol. 2000;36:2056–2063.
33. Fox KAA, Goodman SG, Klein W, et al; for the GRACE Investigators. Management of acute coronary syndromes: Variations in practice and outcome: Findings from Global Registry of Acute Coronary Events (GRACE). Eur Heart J. 2002;23:1177–1189.
34. Marciniak TA, Ellerbeck EF, Radford MJ, et al. Improving the quality of care for Medicare patients with acute myocardial infarction: Results from the Cooperative Cardiovascular Project. JAMA. 1998;279:1351–1357.
35. Katz JN. Who belongs in the cardiac intensive care unit? JAMA Cardiol. 2017;2(1):45–46.
36. Katz JN, Minder M, Olenchock B, et al. The genesis, maturation, and future of critical care cardiology. J Am Coll Cardiol. 2016;68:67–68.
37. Katz JN, Turer AT, Becker RC. Cardiology and the critical care crisis: A perspective. J Am Coll Cardiol. 2007;49:1279–1282.
38. Teskey RJ, Calvin JE, McPhail I. Disease severity in the coronary care unit. Chest. 1991;100:1637–1642.
39. Groeger JS, Strosberg MA, Halpern NA, et al. Descriptive analysis of critical care units in the United States. Crit Care Med. 1992;20:846–863.
40. Reynolds HN, Haupt MT, Thill-Baharozian MC, et al. Impact of critical care physician staffing on patients with septic shock in a university hospital medical intensive care unit. JAMA. 1988;260:3446–3450.
41. Brown JJ, Sullivan G. Effect on ICU mortality of a full-time critical care specialist. Chest. 1989;96:127–129.
42. Pronovost PJ, Angus DC, Dorman T, et al. Physician staffing patterns and clinical outcomes in critically ill patients: A systematic review. JAMA. 2002;288:2151–2162.
43. Pollack MM, Cuerdon TC, Getson PR, et al. Pediatric intensive care units: Results of a national survey. Crit Care Med. 1993;21:607–614.
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44. Angus DC, Kelley MA, Schmitz RJ, et al. Current and projected workforce requirements for care of the critically ill and patients with pulmonary disease: Can we meet the requirements of an aging population? JAMA. 2000;284:2762–2770.
45. Corrigan J, Kohn LT, Donaldson M, for The Committee on Quality of Health Care in America, Institute of Medicine, eds. To Err Is Human: Building a Safer Health System. Washington, DC: National Academies Press; 2000.
46. Committee on Quality of Health Care in America: Institute of Medicine. Crossing the Quality Chasm: A New Health Care System for the 21st Century. Washington, DC: National Academies Press;
2001.
47. Carson S, Stocking C, Podscadecki T, et al. Effects of organizational change in the medical intensive care unit of a teaching hospital: A comparison of open and closed formats. JAMA. 1996;276:322–328.
48. Multz AS, Chalfin DB, Samson IM, et al. A closed medical intensive care unit improves resource utilization when compared with an open MICU. Am J Respir Crit Care Med. 1998;157: 1468–1473.
49. Joint Position Statement. Essential provisions for critical care in health system reform. Crit Care Med. 1994;22:2017–2019.
50. Raphaely RC. Health system reform and the critical care practitioner. Crit Care Med. 1994;22:2013–2016.
51. van Diepen S, Sligl WI, Washam JB, et al. Prevention of critical care complications in the coronary intensive care unit: Protocols, bundles, and insights from intensive care studies. Can J Cardiol. 2017;33:101–109.
52. Dracup K, Bryan-Brown CW. One more critical care nursing shortage. Am J Crit Care. 1998;7:81–83.
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leapfroggroup.org/about_us/leapfrog-factsheet. Accessed March
11, 2017.
54. Halperin JL, Williams ES, Fuster V, et al. Core Cardiovascular Training Statement 4 (COCATS 4) (revision of COCATS 3). J Am Coll Cardiol. 2015;65:1721–1723.
55. Nishimura RA, Warnes CA. Educating cardiovascular fellows in the contemporary era. JAMA Cardiol. 2017;2(2):119–120.
56. Hill T, Means G, van Diepen S, Timir P, Katz JN. Cardiovascular critical care: A perceived deficiency among U.S. trainees. Crit Care Med. 2015;43(9):1853–1858.
57. Rosenfeld BA, Dorman T, Breslow MJ, et al. Intensive care unit telemedicine: Alternate paradigm for providing continuous intensivist care. Crit Care Med. 2000;28:3925–3931.
Every human being of adult years and sound mind has a right to determine what shall be
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OUTLINE
Western Bioethics, 12
Principlism, 12
Patient Autonomy, 12 Beneficence, 13 Nonmaleficence, 13 Justice, 13
Consequentialism, 14 Casuistry, 14
Practical Guidelines for Ethical Decision Making, 15
Patient Partnership, 15 Authority for Medical Decision Making, 15 Communication, 16 Determining Patients’ Values and Preferences, 17
2
Ethical Issues in the Cardiac
Intensive Care Unit
Michael S. O’Connor, Martin L. Smith, Timothy Gilligan
done with his own body.
U.S. Supreme Court Justice Cardozo
Withholding and Withdrawing of Life Support, 17
Legal Precedents, 17
Patients With Decision-Making Capacity, 17 Patients Lacking Decision-Making Capacity, 17
Advance Directives, 18
Living Wills and Medical Powers of Attorney, 19 Patient Self-Determination Act, 19
Deciding to Withhold or Withdraw Life Support, 19
Withholding and Withdrawing Basic Life Support, 20 Withholding Advanced Life Support, 20 Withdrawing Advanced Life Support, 21
Cross-Cultural Conflict, 24 Conclusion, 25
1
Ethical challenges abound in intensive care units (ICUs). Treat­ment in ICUs represents one of the costliest and most aggressive forms of Western medicine. ICU patients are the sickest and the most unstable, and they often cannot participate in health care decision making. Patients’ families and loved ones are often left reeling by the sudden onset of serious illness. These factors bring to the ICU a host of difficult and troubling ethical issues. Our societal discomfort with human mortality, combined with media that exaggerate what modern medicine can accomplish, can exacerbate the discord that often arises when engaging these ethical challenges. Responding in an informed, compassionate, and ethically supportable manner is an essential part of high­quality critical care medicine.
The primary defining characteristics of cardiac ICU (CICU) patients are cardiovascular instability and life-threatening illness that require intensive monitoring, advanced life-support tech­niques, or both. Many such patients have poor prognoses; a substantial percentage die without leaving the hospital. Hence clinicians working in critical care must be comfortable working in the presence of death and dying and must be prepared for the attendant ethical challenges that often arise. These issues include, but are not limited to, writing do-not-resuscitate (DNR) orders, negotiating with family members or surrogates who do
not want a patient to be told about a terminal diagnosis or prognosis, trying to determine what level of treatment an irrevers­ibly ill patient without decision-making capacity would choose if able, and withholding or withdrawing life support. As medicine’s ability to preserve the physiologic functioning of critically ill patients has improved, physicians, other clinicians, patients, and their families are increasingly faced with questions of when and how to terminate life-sustaining treatment.
When addressing these issues, clinicians are best served by remembering that their primary responsibility is to act in the patient’s best interest by maintaining open and honest com­munication with patients, their surrogates, and with each other. Acting in the patient’s best interest means providing the high­quality treatment and care for those who will likely survive the CICU and facilitating a peaceful and dignified death for those who will not.
Economic and resource utilization issues complicate further the work of ICU professionals. In the United States, CICU beds cost from $4000 to $10,000 per day. increasing pressures to limit health care costs, the pattern of increased financial costs accrued by patients with poor prognoses in ICUs has drawn increased scrutiny, prompting the study of strategies to avoid prolonged futile ICU treatment.4 The practice
2,3
In the current climate of
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of providing tens of thousands of dollars’ worth of advanced care to ICU patients who have essentially no chance of recovery is ethically problematic, given the potential to deplete patients’ savings and to drive them and their families into bankruptcy. Furthermore, health care resources are limited, in terms of dollars, ICU beds, and personnel time and effort. With many CICUs routinely filled to capacity, allowing patients with no real chance of improvement to occupy CICU beds may prevent other patients with a high probability of benefiting from intensive care from being able to gain access to the CICU. Although there is general opposition to withholding potentially beneficial therapies solely for economic reasons, in the current political and economic climate, critical care physicians and other clinicians should become conversant with ICU economics and develop sound stewardship practices of CICU resources.
This chapter provides a basic overview of the ethical chal­lenges that arise in critical care medicine. After a review of basic principles, guidelines, and methods of bioethics, as well as a discussion of the ethical challenges related to health care economics in the ICU, this chapter focuses on specific ethical issues related to withholding and withdrawal of life support. Brief discussions of euthanasia and cross-cultural conflict are also included. Some cases are presented to illuminate how the frameworks and practices described in this chapter may be applied.
A variety of methods for “thinking ethically” have been identi­fied and used during the decades-long evolution of the field of bioethics.17 We have selected three methods that have been the most influential in bioethical analysis to date and that are the most helpful for addressing clinical situations in the CICU. The three methods are (1) principlism, (2) consequentialism, and (3) casuistry. Clinicians should not feel compelled to choose one of these methods over the others as their primary way for ethical analysis and reflection. Instead, using some combination of the three methods in most cases can be the most helpful.
Principlism
Principlism holds that actions must be evaluated based on their inherent qualities and the motivations or intentions underlying the actions. When applied to the clinical setting, principlism asserts that clinicians have specific obligations, moral duties, and rules that, in most circumstances, should be followed and fulfilled.18 Beauchamp and Childress have identified four fun­damental principles and duties from which all other bioethical principles and duties can be derived: patient autonomy, benefi­cence, nonmaleficence, and justice.19 However, it is impossible for clinicians to perform their duties without sometimes violating one or more of these fundamental principles. Indeed, many ethical dilemmas present a clash between these principles; in such situations, health care professionals must choose which principle to uphold and which to relinquish.
WESTERN BIOETHICS
Bioethics addresses two distinct but overlapping areas: the generic issue of what it means to provide health care in a manner consistent with basic moral values and the more specific challenge of identifying principles and guidelines for proper conduct that can be widely agreed on by the health care professions. For example, although confidentiality in medicine, as in law, is a strict ethical rule, it derives less from abstract moral values and more from its necessity for the effective provision of treatment and care. For the purposes of this chapter, the term bioethics represents guidelines for proper and principled conduct by health care professionals.
Although Western bioethics dates to the ancient Greeks, it only started to develop into a discipline of its own in the 1950s, largely as a result of new dilemmas posed by powerful new medical therapies. As medicine developed and strengthened its ability to maintain physiologic functioning in the face of ever greater insult and injury to the human body, patients—and more often their surrogates, families, and health care professionals—found themselves struggling with a central question of when treatments are life sustaining versus death prolonging. The 1976 New Jersey Supreme Court decision in the case of Karen Ann Quinlan established that advanced life support could be withdrawn from patients who have essentially no chance to regain any reason­able quality of life. state and federal laws, and reports and consensus statements from various professional societies and regulatory commissions have helped define in what manner, under what circumstances, and by whose authority advanced or basic life support can be forgone.
6–16
5
Since that time, many other legal decisions,
Patient Autonomy. Autonomy refers to the fundamental common
law right of patients to control their own bodies. As the U.S. Supreme Court ruled in 1891 in a case unrelated to health care: “No right is held more sacred or is more carefully guarded by the common law than the right of every individual to the pos­session and control of his own person, free from all restraints or interference by others, unless by clear and unquestionable authority of law.”20 In medical terms, patient autonomy means the right of self-determination, including the right to choose for oneself among various recommended therapies. Autonomy also implies a respect for adult patients capable of making their own decisions. The principle of autonomy stands in contrast to paternalism, which presumes that physicians and other health care professionals know best and decide for the patient or authori­tatively direct patients to the “right decisions.” The delineation between respect for autonomy and paternalism can be captured by affirming that in the decision-making process, clinicians have a role to inform, educate, advise, recommend, guide, and even try to persuade patients but should never engage in manipulation or coercion.
Respect for autonomy means that adult patients with decision­making capacity have the right to refuse medical treatments even if the treatments are life sustaining. It follows that, except in emergency situations, patients must consent to any treatments they receive and they must understand the risks, benefits, and reasonable alternatives of any proposed therapies or procedures for this consent to be meaningful. Withholding information from patients is a threat to their autonomy.
The acuity of CICU patients’ illnesses should not be used as an excuse for failing to obtain informed consent for treatment
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in general or for procedures in particular. Physicians have the responsibility to ensure that the health care provided is in accord with patient wishes. For patients lacking decision-making capacity, a patient-designated surrogate or a close family member should be identified to help plan an appropriate level of treatment consistent with the best available knowledge of what the patient would have wanted. Patients do not have the right to demand specific treatments; only licensed health care providers have the authority to determine which of the therapies under their purview are indicated for a patient.
Minors do not enjoy the same decisional rights as adults and are generally not viewed as sufficiently autonomous by law to make their own health care decisions. Instead, these decisions usually fall to the minor’s parents or legal guardian. However, U.S. courts have consistently been willing to overrule parents in cases in which there is evidence that the parents’ decisions are not consistent with the best interests of their child. For example, although adult Jehovah’s Witnesses can refuse medically indicated blood transfusions for themselves, they cannot make the same refusal on behalf of their children.
Beneficence. The principle of beneficence represents health
care professionals’ responsibility and ethical duty to benefit their patients. This duty encompasses the promotion of patients’ health and well-being as well as reducing suffering when possible. At its most basic level, beneficence is necessary to justify the practice of medicine, because if professionals do not benefit their patients, there is no rationale for the work. One caution related to the principle of beneficence is that professionals may judge “patient benefit” primarily in physiologic categories related to medical goals and outcomes. However, from the patient’s perspective, benefit may include not only medical outcomes but also psychosocial-spiritual outcomes, interests, and activities that help to define the meaningfulness and quality of a patient’s life. Thus, a recommended intervention with the likelihood of a good medical outcome but which would not allow a patient to continue a significant interest or activity could be judged differently by the patient than by the health care team because of differing perceptions of “benefit.”
More philosophically, beneficence as a principle in medicine supports the sanctity of human life and asserts the significance of human experience. In this regard, health care professionals practice beneficence not only by curing diseases, saving lives or alleviating pain, nausea, and other discomforts but also by expressing empathy and kindness—by contributing to patients’ experiences that they are cared for and that their suffering is recognized. In the CICU, with critically ill patients near the end of life, presence, compassion, and humanity are sometimes the greatest forms of care and benefit that clinicians can offer.
Nonmaleficence. Nonmaleficence requires physicians and other
clinicians to avoid harming patients. More colloquially cited as “first, do no harm,” the principle of nonmaleficence warns clini­cians against overzealousness in the fight against disease. Unfortunately, opportunities to do harm in medicine abound. Almost every medication and procedure can cause adverse effects and simply being in the hospital and in the ICU puts patients
at risk for blood clots and infection by a more dangerous group of microorganisms than they would likely encounter at home. Unnecessary tests may unearth harmless abnormalities, the work-up of which may result in significant complications. An unnecessary central venous line may result in a pneumothorax, bloodstream infection, or thrombus. Unnecessary antibiotics may result in anaphylactic shock, Stevens-Johnson syndrome, acute tubular necrosis, pseudomembranous colitis and toxic megacolon, or subsequent infection by resistant organisms. Many clinicians tend to feel much more comfortable with acting than with refraining from acting; hence, in the face of clinical uncer­tainty, many physicians are inclined to order another test or try another medication. It is essential that physicians constantly and consistently assess the potential benefits and the potential harms (including financial costs) that may result from each test and treatment they prescribe for each patient.
There are also other harms specific to the CICU. When patients languish on mechanical ventilation or invasive circulatory assistance without a reasonable possibility of recovery, physicians violate the principle of nonmaleficence. For many or most patients, the ICU can be an uncomfortable and undignified setting, filled with unfamiliar and jarring sights and sounds. Being sustained on mechanical ventilation ranges from unpleasant to miserable unless the patient is unconscious or heavily sedated. The only justification for putting patients through such experiences is an expectation that they have a likelihood of returning to some reasonable quality of life as determined by the patient’s values. When physicians’ care and treatments serve only to prolong the process of dying and suffering, they violate nonmaleficence.
Just as physicians can harm their patients by providing exces­sively aggressive treatments, they can also harm patients by withholding care from them. When patients remain in the CICU for prolonged periods of time or their disease and complications are particularly troubling, physicians may be inclined to spend less time with sicker persons or to focus on flow sheets and documentation rather than on these challenging patients. Illness, however, is often a lonely and frightening experience; abandon­ment by clinicians adds to patient suffering.
Justice. Justice in clinical ethics means a fair allocation of health
care resources, especially when the resources are limited. In the United States, on the macro-allocation level, there has been a failure to achieve a just health care system by any standard. The quality and accessibility of medical care available remains largely a function of an individual’s socioeconomic status and racial/ ethnic categorization. Americans in disadvantaged economic, ethnic, or racial groups receive less care, lower-quality care, suffer greater morbidity and mortality from illness, and die younger in most disease-specific categories than do other citizens. The principle of justice demands that health care resources be allocated not according to the ability to pay but rather accord­ing to need and to the potential of treatment to benefit the individual.
On a micro-allocation level, the principle of justice plays a role in the CICU in terms of triage. With a limited number of beds, those in charge of the unit must decide which patients have the greatest need and the greatest potential to benefit.
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Moreover, because intensive care represents a very expensive form of medical intervention, consuming over 13% of U.S. hospital costs and 4% of total U.S. health care expenditures,21 there is a strong national interest in curtailing wasteful ICU use. The concepts of futility and rationing help in analyzing the challenge of triage but, as Jecker and Schneiderman have observed, the two terms have different points of reference.
22,23
Determina­tions of futility are related to whether identified goals of treatment are achievable.
24,25
Further, futility can have two distinct meanings, referring either to treatment that has essentially no chance of achieving its immediate physiologic purpose or outcome or that has essentially no chance of meaningfully benefiting the patient.26 For example, treating a bacterial pneumonia in a brain-dead patient would be considered not futile with the former definition and certainly futile with the latter. The threshold for futility is a contentious subject; some have argued that the impossibility of arriving at widely accepted objective, quantitative standards renders use of the term inappropriate.
27,28
Futility differs conceptually from rationing in that futility applies to an individual patient’s likelihood of benefiting from treatment, whereas rationing refers to the distribution of limited resources within a population. Rationing is fair only when it is applied in an even-handed way for patients with similar needs, without regard to race, ethnicity, educational level, or socioeconomic status. Futility affects triage decisions because futile treatment violates the principles of beneficence and nonmaleficence. Such wasteful use of medical care also violates the principle of justice when resources are limited. Rationing comes into play when there are more patients who need ICU care than there are beds, mechanical ventilators, or other critical care resources available. As health care costs continue to climb, physicians may find increasing pressures in the CICU to limit treatment for patients with poor prognoses. The ethical test in such circumstances is whether rationing is necessary and whether it is applied in a fair manner (i.e., whether similar cases are treated similarly). To maintain a clear understanding of what physicians are doing, it is essential that assertions of futility do not become either a mask behind which rationing or hospital cost-saving decisions can hide or a means of bullying patients or their families into accepting treatment-limitation decisions.
24,29,30
The four principles of bioethics can help untangle and clarify many complex and troubling dilemmas. In different cases, each of the individual principles may seem more or less important, but they are all usually pertinent in some way. These principles can certainly come into conflict with each other, which can then signify the presence of an ethical dilemma. Practically, the principles can help to pose a series of significant, patient-centered questions for clinicians: Am I respecting my patient’s autonomy? Has the patient consented to the various treatments? Do I know my patient’s resuscitation status? Is my therapeutic plan likely to benefit my patient? Am I doing all I can to improve my patient’s well-being? Am I minimizing patient harm? Have I identified goals of treatment or care with my patient (or the surrogate) and are those goals achievable? Is there an appropriate balance between potential benefit and risk of harm? Is my plan of care consistent with the principle of justice?
Consequentialism
The second method for “thinking ethically” about clinical and ICU situations is consequentialism, which has its root meaning in the Western philosophical theory of teleology (“telos” in Greek means “ends”). Consequentialist reasoning judges actions as right or wrong based on their consequences or ends. This method of reasoning and analysis requires an anticipatory, projected calculation of the likely positive and negative results of different identified options prior to decisions and actions being carried out. For example, a physician may be requested by family members not to disclose a poor prognosis to their hospitalized loved one because, in their view, the disclosure will cause the patient to experience distress and to lose hope. Because the patient should be at the center of a “calculation of consequences” for this scenario, the first question should be this: How will the disclosure or nondisclosure impact the patient, both positively by way of benefits or negatively by way of harms? The patient is not the only one who will experience consequences as a result of this particular decision, however. Other stakeholders who can be affected positively and negatively include the patient’s family members (will they be angry and feel betrayed if the poor prognosis is disclosed or will they ultimately feel relieved?), bedside nurses and other involved health care professionals (will they feel distress if they are expected to participate in a “conspiracy of silence” or if the patient asks them a direct question about the prognosis?), the hospital (will disclosure or nondisclosure be in accord with organizational values, such as respect for patients and compassion?), and even the wider community and society (how will other and future patients be affected if they come to know that physicians at this particular hospital disclose or do not disclose poor prognoses to patients?). When applying consequentialism, the projected and accumulated benefits and harms for all involved should be weighed against each other with the goal of maximizing benefits and minimizing harms.
One challenge of calculating consequences for the options in each medical situation is how to be sufficiently thorough in anticipating what the projected outcomes and results might be. For many situations, experienced physicians and other clinicians, using their knowledge of previous cases and building on their collective wisdom, can reasonably project medical, legal, and psychosocial-spiritual consequences for the different options. A more problematic challenge when using consequentialism is determining how much weight to assign each of the various beneficial and burdensome consequences. For example, should a potential legal risk to the physician and hospital that could result from a specific bedside decision be given more weight than doing what is clearly in a patient’s best medical interests? In the end, after identifying and weighing projected burdens and benefits of reasonable options, clinicians using consequential­ism would be ethically required to choose and act on the option that is likely to produce the most benefit and to avoid the option(s) likely to bring the most harm.
Casuistry
The third method of analysis that can lead to ethically supportable actions is casuistry,31 a word that shares its linguistic roots with
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the word “cases.” Although the term may not be familiar to many clinicians, the method itself is likely to be familiar to them. Casuistry is based on practical judgments about the similarities and differences between and among cases. Both medicine and law use this methodology when they look to previous and precedent cases to provide insight about a new case at hand. For example, when a patient presents to a physician with a specific set of symptoms and complaints and after the physician analyzes the results of various diagnostic tests, a skilled and knowledgeable physician is usually able to arrive at a specific diagnosis. The diagnosis is based on attention to the details of the patient’s symptoms and test results but is also based on the physician’s training and experience of having personally seen or having read in the published literature about similar or identical cases. Casuistry in ethical analysis uses a parallel kind of reasoning.
According to casuistry, attention must first be given to the specific details, features, and characteristics of the ethical dilemma at hand. Then, the goal is to identify known previous cases that are analogous to the new case and had reasonably good and ethically supportable outcomes. If such a previous or paradigm case can be identified for which a consensus exists about correct action, then this previous case can provide ethical guidance for the new case at hand. For example, a 25-year-old ICU patient with Down syndrome and an estimated cognitive ability of a 4-year-old is in need of blood transfusions. Her family members are Jehovah’s Witnesses and adamantly object to the transfusions based on their religious beliefs. Using casuistry and appealing to similar cases, the ICU team notes that there is an ethical and legal consensus related to pediatric patients of Jehovah’s Witness parents to override parental objections to blood transfusions and to act in the patient’s best interests. Because the 25-year-old patient’s cognitive ability is similar to that of pediatric patients who do not have the cognitive ability to commit themselves knowingly and voluntarily to a set of religious tenets, the ethi­cally supportable option in the pediatric cases (i.e., overriding parental objections to blood transfusions) could be extended to this case.
An additional feature of casuistry is that as cases are compared and similarities and differences are identified, moral maxims or ethical rules of thumb can emerge that can also be helpful for current and future cases and dilemmas. Such moral maxims include adult, informed patients with decision-making capacity can refuse recommended treatment; a lesser harm to a patient can be tolerated to prevent a greater harm; and physicians are not obligated to offer or provide treatments that they judge to be medically inappropriate. One challenge of casuistry is to pay sufficient attention to the relevant facts and details of the new case to be able to identify previous cases that are similar enough to provide guidance for the case at hand.
An effective use of casuistry by physicians and health care teams can lead to the buildup of a collective wisdom and practi­cal experience from which to draw when new ethical dilemmas arise. Parallel again to physicians building up medical experi­ence and wisdom over time, physicians can establish an ethical storehouse of knowledge and insight based on previous cases and ethical dilemmas that they have experienced, heard about, or read about.
PRACTICAL GUIDELINES FOR ETHICAL DECISION MAKING
In addition to the three methods discussed earlier, the following four practical guidelines can facilitate the process of ethical decision making:
1. Recognize patients as partners in their own health care decisions.
2. Establish who has authority for decision making.
3. Establish effective communication with patients and their loved ones through routinely scheduled family meetings.
4. Determine patient values and preferences in an ongoing manner.
Patient Partnership
All decision making—and, indeed, all health care—must take place with the recognition that patients are partners in their own health care decisions. The American Hospital Association has sup­ported this partnership model for decision making by addressing patient expectations, rights, and responsibilities.32 Among these expectations and rights, the most salient are the right of patients to participate in medical decision making with their physicians and the right to make informed decisions, including both to consent to and to refuse treatment. In order to exercise these rights, patients need accurate and comprehensible information about diagnoses, treatments, and prognosis. More specifically, patients need a description of the treatment, the reasons for recommending it, the known adverse effects of the treatment and their likelihood of occurring, possible outcomes of the treat­ment, alternative treatments and their attendant risks and likely outcomes, the risks and benefits involved in refusing the proposed treatment, and the name and position of the person or persons who will carry out or implement the treatment plan. In cases in which someone other than the patient has legal responsibility for making health care decisions on behalf of the patient, all of the patient’s expectations and rights apply to this designee as well as the patient. According to the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research: “Ethically valid consent is a process of shared decision-making based upon mutual respect and participation, not a ritual to be equated with reciting the contents of a form that details the risks of particular treatments.”
Authority or Medical Decision Making
Establishing the source of authority for making health care decisions for a patient is a common problem in critical care medicine. Although adult informed patients with decision-making capacity retain this authority for themselves, many ICU patients are unable to participate in decision making. Whatever the patient’s condition, however, the patient remains the only true source of ultimate authority and the physician must assemble and review the best available evidence of what the patient would want done. If a patient lacking decision-making capacity has prepared a living will or a health care power of attorney, these documents should be obtained and reviewed. Close family members and loved ones should also be consulted; they may have spoken with the patient about what level of treatment the
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patient would want in the event of critical illness. In most (but not all) cases, they know the patient best and have the patient’s best interest at heart. Having reviewed current clinical circum­stances, treating physicians should provide interventions consistent with their best understanding of what the patient would have wanted. Physicians play the role of guides and advisors, evaluating a patient’s medical problems, presenting and explaining options for diagnosis and management, and facilitating thoughtful decision making. Except in emergencies or when treatment is clearly futile, physicians should not proceed with management plans until those with true authority to consent to or refuse treatment have approved the plans.
Communication
Explaining medical problems and treatment options to patients and their loved ones, determining patient quality-of-life values and desires, and achieving consensus for a management plan all require effective communication skills.34 Communication can be especially difficult and important in the CICU setting. Patients and their loved ones are often distressed or intimidated both by the severity of the patient’s condition and by the unfamiliar environment. With many basic life functions taken over by the nursing and medical staff and their various machines and devices and with visiting hours sometimes restricted, patients and their loved ones may feel powerless and experience anxiety or anger from the loss of control. Honest, effective, and recurrent com­munication can help diminish these feelings and decrease the alienation that attends ICU admissions.
High-stakes communication can be conducted more effectively when there is a trusting relationship: taking a little time to get to know the patient and the family and what the patient’s life was like prior to the illness is a wise investment. If clinicians start by building a relationship and establishing trust, communication becomes easier. to listen attentively36 and to express empathy and compassion. Physicians and nurses must be able to employ tact without compromising honesty and to acknowledge and respond to strong emotional expressions without withdrawing or becoming defensive or antagonistic. Clinicians often must read between the lines and recognize subtle cues about what matters most to patients and their loved ones. Effective communication prevents and defuses conflict; helps patients and families work through their anxieties, fears, and anger; and is the most important skill in negotiating the difficult ethical dilemmas arising in the CICU setting.
Establishing effective communication requires time and planning. Clinicians must remind themselves that although ICU care may become routine for them, it is rarely that way for patients or their loved ones. Discussions with a patient’s family members or loved ones should take place either at the bedside, if the patient is able to participate, or in a private conference or waiting room; a hospital corridor is an inappropriate location. Because patients and their loved ones will likely feel overwhelmed by the patients’ illnesses and the ICU environment, communication should be simple and to the point, with more technical details provided as requested. Encouraging the various parties to ask questions and express their feelings helps to counteract any
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Key communication skills include the ability
intimidation they may feel and communicates to them that the professional at the bedside cares about their concerns.
Finally, for communication to be effective, information should be conveyed in language and at a level of detail that the listener can understand clearly. Medical jargon, an overly sophisticated vocabulary, excessive detail, or an inappropriate emotional tone can defeat what is otherwise a sincere effort to communicate. Clinicians should always ask patients or their loved ones to summarize what they have heard; this is an easy way to assess their comprehension and to correct misunderstandings.
Several types of inadequate communication occur regularly in CICUs. The most common problems result either from focusing on trends rather than on the patient’s overall condition or from drawing attention to minor favorable signs when the overall prognosis remains dismal. If a patient is not likely to survive to CICU discharge but is not deteriorating, describing the patient to family members as stable will most likely mislead them. A more truthful report might be: “Your wife is as sick as any person could be and the odds are overwhelming that she will not survive.” A similar problem arises in telling a couple that their son with multiorgan failure has improved when in fact there has only been a slight reduction in his oxygen requirement and his overall prognosis remains poor. Such inappropriate “good news” may make the physician feel better, but it can be cruelly misleading by engendering false hopes and needlessly interfering with their grieving process. It is essential to tell the truth and to provide accurate prognostic information in emotionally sensitive ways.
A second common problem is for patients and their families to receive conflicting information or advice from different physi­cians involved in a patient’s care. Alternatively, different consulting services may each address a specific aspect of the patient’s treatment without helping the patient and family to integrate disparate pieces of data into a coherent overall understanding of the patient’s condition, prognosis, and treatment options. Multidisciplinary care conferences that include the intensivist, relevant consulting physicians, nursing, and—when appropriate— social work and case management should be held periodically to ensure that there is a coherent, shared perspective of the patient’s overall management plan. Formal, structured multi­disciplinary conferences that include patient and family and that are held within 72 hours of ICU admission have been shown to reduce the burdens of intensive care for dying patients.
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When clinicians find that effective communication is not taking place and conflict is developing, they should recruit assistance from an ethics consultant or another facilitator such as a chaplain, social worker, or psychotherapist. Clinicians should think of facilitators as valuable resources and not view their use as a failure. CICU physicians are generally busy with a demanding set of patients and have limited time to talk to patients and their families, yet these patients often have very high communication needs. Bringing in an ethics consultant or other facilitator to supplement the CICU team’s efforts can help meet these needs without overtaxing the CICU physicians.
In addition, working with critically ill and dying patients can be highly stressful and emotionally draining, both on a case-by-case basis and as an accumulating problem over time. Clinicians may feel burned out or may seek to protect themselves by creating
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emotional distance from their patients. Although clinicians cannot delegate all communication responsibilities, the assistance of a facilitator can reduce the stress on all parties involved. Not only can facilitators bring additional communication skills to the situation, but they often have more time for establishing rapport and, as third parties with fresh perspectives, can bring new insight to ethical dilemmas. We recommend requesting a facilitator early whenever it appears that ethical decision making will be difficult.
Determining Patients’ Values and Preferences
The fourth practical guideline in ethical decision making is determining a patient’s values and preferences regarding quality of life and medical care. ICU medicine can be a painful and distressing experience for the patient. Whether and for how long such an ordeal is appropriate are questions that in the end can be answered only by the patient and are also dependent on prognosis, on how the patient defines quality of life, and how sensitive the patient is to the discomforts and indignities of the illness and hospitalization. These questions become most sig­nificant for chronically or terminally ill patients who are dependent on advanced life support. Clinicians must strive to learn each patient’s views regarding what constitutes a meaningful and acceptable life compared with a mere prolongation of physiologic functioning. Patients have different preferences about how aggressively they wish to be treated and when they want their physicians to forego life-sustaining treatment. Moreover, since patients’ views often change over time, even during the same hospitalization, patients’ perspectives should be reviewed on a regular basis. Whenever possible, discussions with patients about these matters should take place with family members and loved ones present so that all parties have the same understanding of the patient’s preferences, wishes, and values. Otherwise, if the patient later loses decision-making capacity, the family may balk at following the patient’s wishes.
When patients do not have decision-making capacity, physi­cians and clinical team members must turn to surrogate decision makers, advance directives, or both. Decisions about life support and end-of-life care are among the most personal decisions to be made. For surrogate decision makers, being asked to make such decisions on a loved one’s behalf frequently elicits feelings of grief, guilt, confusion, and being overwhelmed. Physicians can perform a tremendous service for their patients’ families and loved ones by discussing resuscitation status, life support, and terminal-care issues with patients before they lose decision­making capacity. Patients are not generally eager to hold such discussions; however, this does not excuse avoidance of the subject, especially with patients who have life-threatening diseases.
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WITHHOLDING AND WITHDRAWING OF LIFE SUPPORT
Withholding or withdrawing life support is one of the most difficult actions that a physician may have to perform. Having been trained to prolong life and overcome disease, clinicians may feel like failures when allowing a patient to die whose life could have been prolonged with life support. Clinicians, however,
are not omnipotent. Death is the natural conclusion to life; although death is often viewed as an enemy in hospitals, it can also sometimes be a welcome end. For severely ill patients with irreversible conditions, the only choices available may be a prolonged and miserable dying versus a more rapid, comfortable, and dignified death. In these cases, death can represent an end to suffering, prevent a life that has been happy from ending with prolonged misery, and can allow survivors to mourn and proceed with their lives. A relatively pain-free and dignified death is sometimes the best option that physicians can offer.
Legal Precedents
Legal guidelines for withholding and withdrawing life support come predominantly from state court rulings; federal guidance has been minimal in this regard. State court rulings, however, apply only within that state’s boundaries; they have no formal legal standing in other states, although they may be cited by other state courts. Hence, although the right to refuse medical treatment is protected both by common law and by the U.S. Constitution, the exact limitations of this right and the conditions under which life support can be withdrawn from patients lacking decision-making capacity vary from state to state. There exists significant variability among states regarding what the courts will accept as clear and convincing evidence that a patient without decision-making capacity would have wanted life support foregone. As in all human affairs, various court rulings can be somewhat arbitrary, reflecting the background, politics, and moral perspectives of judges who made these rulings. Physicians and hospitals must be familiar with their state’s legal positions on withholding and withdrawing life support. Although malpractice and criminal actions resulting from withholding or withdrawing life support have been extremely rare, this likely stems from the extreme reluctance, bordering on refusal, of physicians and hospitals to terminate life support contrary to the wishes of the patient’s family. Instead, legal action tends to result from a medical team’s refusal to withdraw treatment.
Patients With Decision-Making Capacity. The right of adult
informed patients with decision-making capacity to refuse both advanced life support and medically supplied nutrition and hydration is well established in the United States through case law and hospital policies.38 For instance, the case of Bouvia v.
Superior Court39 concerned a young, quadriplegic woman with
cerebral palsy who was suffering unrelenting pain and directing that the hospital withhold her medically supplied tube feedings so that she could die. The hospital refused. In its 1986 ruling, the California State Court of Appeals found that “to insist on continuing Bouvia’s life … at the patient’s sole expense and against her competent will, thus inflicting never ending physical torture on her body until the inevitable, but artificially suspended, moment of death … invades the patient’s constitutional right of privacy, removes her freedom of choice and invades her right to self-determination.”
Patients Lacking Decision-Making Capacity. The 1976 Karen
Ann Quinlan case5 involved a 22-year-old woman who was in a persistent vegetative state. Her father, who had been appointed
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her legal guardian, requested that mechanical ventilation be withdrawn, asserting that she would not have wanted to be kept alive under such circumstances. Her physicians refused to comply. The case was ultimately decided by the New Jersey Supreme Court, which evaluated “the reasonable possibility of return to cognitive and sapient life as distinguished from … biological vegetative existence.”5 The decision indicated that advanced life support provided a clear benefit to the patient only if it would result in “at very least, a remission of symptoms enabling a return toward a normal functioning, integrated existence.” The court thus ruled that life support could be withdrawn from patients if they had essentially no chance of regaining any reasonable quality of life.
The New Jersey Supreme Court’s ruling based Ms. Quinlan’s right to have the ventilator removed on her constitutional right to privacy. In the absence of any indication from the patient herself of her preferences or values, the court found that the family and physicians were entitled to exercise substituted judg­ment on the patient’s behalf, with the family’s decision taking precedence over that of the physicians.
The major challenge in cases like Quinlan involving patients lacking decision-making capacity is deciding who is the appropri­ate decision maker. While state courts have consistently recognized the right of patients to refuse treatment, including medically supplied nutrition and hydration, they have been much less consistent about the question of how decisions should be made for patients who cannot decide for themselves. States that allow surrogate decisions in the absence of clear and convincing evidence about what the patient would have wanted have tended to follow a standard of either substituted judgment or best interest. The substituted judgment standard allows a surrogate to make one’s best judgment about what the patient would have decided if the patient had decision-making capacity. The best interest standard applies when it remains unclear what the patient would have decided. In this eventuality, the surrogate and the medical team base the decision on the weighing of benefits and harms related to each treatment option.
The concept of proportionate treatment can help guide best­interest decision making: “Proportionate treatment is that which, in the view of the patient, has at least a reasonable chance of providing benefits to the patient, which benefits outweigh the burdens attendant to the treatment. Thus, even if a proposed course of treatment might be extremely painful or intrusive, it would still be proportionate treatment if the prognosis was for complete cure or significant improvement in the patient’s condi­tion. On the other hand, a treatment course which is only minimally painful or intrusive may nonetheless be considered disproportionate to the potential benefits if the prognosis is virtually hopeless for any significant condition.”
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Many states have codified the substituted judgment standard, enacting laws that give families the right to make decisions on behalf of patients lacking decision-making capacity. For patients who did not identify a surrogate decision maker before they lost decision-making capacity, most states identify a hierarchy among relatives so that it is relatively clear who the decision maker should be. Most of these statutes, however, apply only to patients who are terminally ill.
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It is important to recognize that, from a legal and ethical perspective, no distinction is made between nutrition and hydra­tion provided through a medical device (such as a gastrostomy or nasogastric tube or intravenous line) and other forms of life-sustaining treatment such as mechanical ventilation. As one California case ruled, “ medical procedures to provide nutrition and hydration are more similar to other medical procedures than to typical human ways of providing nutrition and hydration. Their benefits and burdens ought to be evaluated in the same manner as any other medical procedure.”
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A different problem arises for persons who have never had decision-making capacity because they have never been in a condition in which they could meaningfully indicate what level of health care they would want if they were critically ill. Such patients include young children and persons with severe intel­lectual disability. Different states have dealt with this problem differently. Some have ruled that the right to refuse medical treatment must extend to incompetent patients, because human dignity has value for them just as for those who have decision­making capacity and that, therefore, legal guardians or conserva­tors have the right to make such decisions on behalf of their wards.42 In such cases, some courts have opined that decisions about foregoing treatment from patients who have never been competent should be based on an attempt to “ascertain the incompetent person’s actual interests and preferences.”43 In other words, the decision should be that which the patient would make if the patient were competent but able to take into account one’s actual incompetency. Other courts have ruled that it is unrealistic to try to determine what a patient who had never been competent would have wanted, and that, for legal purposes, such patients are like children.44 Some courts have specifically rejected the substituted judgment standard, finding that a third party should not have the power to make quality-of-life judgments on another’s behalf.
Many legal issues regarding the termination of life-sustaining treatment remain unresolved. The courts have given essentially no guidance around whether physicians have the authority to terminate life support for patients lacking decision-making capacity against the wishes of the patient’s family. In general, the courts have respected physicians’ rights to refuse to provide treatments that are judged to be medically inappropriate, but the applicability has yet to be established. In most cases involving attempts by hospitals or physicians to use a futility argument to justify foregoing life-sustaining treatment requested or demanded by patients or their family, the courts have ruled in favor of continuing treatment.
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Advance Directives
Since the Quinlan decision,5 state legislatures and the federal government have passed laws designed to increase the authority of individuals to control the level of treatment they want to receive when they are incapable of participating in decision making. These laws set standards for several types of documents but primarily for living wills and medical powers of attorney (MPA). Collectively, these documents are known as written advance directives. These documents usually have legal standing only within the state where they are completed and only if they