REVIEWS Managing futility in critically ill patients with cardiac disease Susanna Price and Elizabeth Haxby Abstract | Despite extraordinary innovations in cardiology and critical care, cardiovascular disease remains the leading cause of death globally, and heart failure has one of the highest disease burdens of any medical condition in the Western world. The lethality of many cardiac conditions, for which symptoms and prognoses are worse than for many malignancies, is widely under-recognized. A number of strategies have been developed within specialties such as oncology to improve the care of patients with life-threatening conditions. For reasons that are multifactorial, these options are often denied to critically ill patients with cardiac disease. Cardiologists and intensivists often regard death as failure, continuing to pursue active treatment while potentially denying patients access to alternatives such as symptom control and end-of-life care. Patient autonomy is central to the delivery of high-quality care, demanding shared decision-making to ensure patient preferences are acknowledged and respected. Although many cardiologists and intensivists do provide thoughtful and patient-centred care, the pressure to intervene can lead to physician-centric care focused around the needs and wishes of medical staff to the detriment of patients, families, health-care workers, and society as a whole. Price, S. & Haxby, E. Nat. Rev. Cardiol. 10, 723–731 (2013); published online 5 November 2013; doi:10.1038/nrcardio.2013.161

Introduction The rate of innovation in the field of cardiology over the past 50 years has been almost unparalleled in any other specialty of medicine. The role of cardiologists has devel‑ oped from being primarily a diagnostician, to an interven‑ tionalist with the potential to perform procedures across the range of cardiological subspecialties. The inception of the coronary care unit (CCU) in the early 1960s is considered by some to be one of the greatest advances in cardio­logy of the 20th century.1 Initially a place for monitoring and treating arrhythmias in patients with ST‑segment elevation myocardial infarction, the remit of the CCU has since changed dramatically, with increasing numbers of admissions of patients with complex medical and cardio­vascular conditions. This increase in CCU util­ ization, together with the requirement to manage the sub‑ stantial comorbidities of an ageing population, has led to the CCU being renamed the cardiac care unit (or cardiac intensive care unit, CICU), more-closely aligned with medical intensive-care units (ICUs).2,3 The parallel devel‑ opment of cardiology and intensive care has, however, led to potential discordance between the expectations of those managing critically ill patients with cardiac disease and the realities of what is feasible and appropriate. Some cardio­logists do not hesitate to refer patients with endstage cardiac diseases to the CICU for heroic treatment, tending to regard death as treatment failure. Critical care is complex and costly at an individual level and for society as a whole.4,5 The legal and ethical Competing interests The authors declare no competing interests.

framework through which its provision is determined, including withholding or withdrawing therapy that is considered futile, lacks clarity. By contrast, in other areas of medicine, such as oncology, these concepts are not only widely discussed, but embedded within the ethos of the subspecialty.6 In this Review, we discuss some of the chal‑ lenges in managing futility in the context of critically ill patients with cardiac disease, current strategies aimed at improving the care of the patient and their family, and how clinicians can be assisted in managing the con‑ flict between the desire to treat and delivering effective end‑of-life care.

Mortality in cardiac disease Despite major advances in cardiology and critical care, cardiovascular disease remains the leading cause of death globally.7 The lethality of many cardiac con­di­ tions, for which the symptoms and prognoses are worse than for many malignancies,8,9 is widely underestimated. Cardiac arrest, heart failure, and cardiogenic shock have the highest mortality of all cardiovascular conditions; 300,000–325,000 cardiac-arrest-related deaths occur in the USA annually,10 and of the 350,000–700,000 cardiac arrests that occur each year in Europe,11 survival to hos‑ pital discharge remains disappointingly low at 4–10%.12 Heart failure has one of the highest disease burdens of any medical condition in the Western world, costing the US economy an estimated $39.2 billion in 2010 alone.10 The average life expectancy from time of diagnosis of heart failure is around 3 years,13 and 30–40% of patients die within 1 year of diagnosis.13 Mortality at 1 year after

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Royal Brompton Hospital, Sydney Street, London SW3 6NP, UK (S. Price, E. Haxby). Correspondence to: S. Price [email protected]

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REVIEWS Key points ■■ Numerous strategies exist to improve the care of patients with life-threatening conditions; however, these options are often denied to critically ill patients with cardiac diseases ■■ Acknowledgement and understanding of the concept of futility in critically ill patients with cardiac disease paves the way for a patient-centred approach to end-of-life care and treatment ■■ Patient autonomy is central to the delivery of high-quality care, demanding decision-making be shared between the physician, the patient, and their family to ensure patient preferences are acknowledged and respected ■■ Shared decision-making, advance care decisions, timely referral for palliative care, and a realistic approach to the benefit of interventions should be standard for all patients with end-stage cardiac diseases ■■ Research should focus on the patient experience, patient-reported outcomes of interventions in end-stage cardiac disease, and how established approaches for malignant disease can be adapted and deployed for cardiac patients

hospitalization for heart failure is high (24–37%).14,15 Despite advances in medical treatment, cardiogenic shock remains particularly lethal, with 30‑day mortality of up to 62%, and fewer than 15% of patients surviving to 6 years.16 However, the perception of patients, carers, and many medical professionals regarding prognosis in cardiac disease is inaccurate. The results of the Study of Heart failure Awareness and Perception in Europe (SHAPE)17 showed that only 29% of patients considered heart failure to be a serious condition, and 67% believed that patients with this diagnosis live longer than those with cancer. This position is compounded by the inadequate tools available to health-care professionals for p­rognostication in critically ill patients with cardiac disease. Evidence exists that a substantial proportion of life‑ time health-care costs are incurred in the last year of life,18 with much of the expense relating to surgery and interventions during this period.19 Patients are subjected to treatments and procedures that often do not improve prognosis, but can reduce the quality of their remaining life. Recognition that admission to the CICU for thera‑ pies that are likely to be unsuccessful, or even harmful, is important for the patient, their family, and carers.

Futility in cardiac disease Mortality in ICUs is high and varies substantially (4.1– 40.6%) depending upon a number of factors, including the subspecialty of the unit.20–24 Furthermore, patients continue to experience morbidity and poor physical quality of life after discharge from the ICU.25 Given that approximately 38% of hospitalized patients spend at least 10 days in an ICU before death, such admissions have been suggested to be inappropriate because these patients are too ill to benefit from ICU treatment.24,26,27 Identifying such patients has always challenged intensivists. However, denying CCU or CICU admission to critically ill patients with cardiac disease is a paradigm shift because, historic­ ally, these units were inclusive, allowing admission to all patients with acute myocardial infarction. Owing to the development of therapies such as salvage percutaneous coronary intervention for cardiogenic shock and cooling after cardiac arrest, evidence is accum­ ulating that prognostication at presentation in patients 724  |  DECEMBER 2013  |  VOLUME 10

with a de novo cardiac event is not valid.28 By contrast, in patients with severe heart failure (typically referred to as ACC/AHA stage D,29 with refractory symptoms despite maximal medical therapy), increasingly frequent, inter‑ mittent, acute decompensation or hospital­ization can signal transition to a secondary phase of decline. 30,31 Furthermore, hospitalization for acute heart failure is associated with very poor quality of life, at least in the short term.32 Although some individuals with severe heart failure might be potential candidates for heart transplant­ ation or mechanical circulatory support, these advanced treatment modalities are not a reality for the vast majority of patients.31 In those with terminal disease and no revers‑ ible pathology, CICU admission for t­ reatment could be regarded as harmful or, at best, futile. Most experienced clinicians would recognize futile treatment; however, the definition of futility in this con­ text has been much debated.33–37 Medical futility was acknowl­e dged in Ancient Egypt, and writings from Ancient Greece provide both quantitative and qualita‑ tive descriptions.38,39 A quantitative definition was out‑ lined by Hippocrates: “Whenever the illness is too strong for the available remedies, the physician surely must not expect that it can be overcome by medicine … to attempt futile treatment is to display an ignorance that is allied to madness.”38 To address the question ‘how many times and to what degree should a treatment be initiated before it is judged futile?’ a number of modern quantita‑ tive defin­itions have been proposed, including adapting the criteria used in clinical trials40 or a common-sense quanti­tative definition proposed by Schneidermann and colleagues41 to overcome the “paralysis of uncertainty that has forced clinicians to pursue the most unlikely treat‑ ments”. By contrast, a qualitative definition of futility was described by Plato: “For those whose lives are always in a state of inner sickness Asclepius did not attempt to pre‑ scribe a regime to make their life a prolonged misery… a life with preoccupation with illness and neglect of work is not worth living.”39 This description was redefined by Schneidermann as the “unacceptable likelihood of achieving an effect that the patient has the capacity to appreciate as a benefit”.40 Additional definitions proposed include those dependent upon the likelihood of achiev‑ ing the patient’s goals, which is a flawed concept because the goals might be unrealistic; the unacceptable likeli‑ hood of prolonging life (historically, the aim of medicine was to alleviate suffering, not to prolong the process of dying); or the unacceptable likelihood of achieving any physio­logical effect on the body that could be irrelevant or potentially harmful, for example tight glycaemic control in a patient who is critically ill.40,42 The uncertainty and debate as to whether CICU admission could potentially benefit some patients from whom it is denied raises the spectre of ‘rationing’. This term is defined as “the allocation of resources in the face of limited availability”,43 necessarily meaning that “potentially beneficial interventions are withheld from some patients”.44 This concept is universal, although rarely acknowledged, in health care. Accepting that the allocation of marginally beneficial or nonbeneficial



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REVIEWS care (including CICU admission) must be limited pre‑ sents the challenge of how to establish fair allocation of resources and upon which principles these decisions should be based.45 By contrast, futility implies that the proposed intervention does not offer benefit for a par‑ ticular patient. Given the invasive nature of cardiac intensive care and its potential to cause harm, defining its ‘utility’40,46 by balancing the intended benefits and possible risks from the perspective of patients, rather than that of physicians, is more useful than defining its ‘futility’. Very elderly patients (aged >80 years) merit particular thought when considering CICU admission, because the expected benefits of medical or unplanned surgical ICU admissions among these individuals are particularly uncertain.47 Importantly, harm from in­appropriate interventions is not limited to an indi‑ vidual patient.40 Inappropriate application of intensive care diverts resources from other patients, and any such interventions would be unacceptable if contrary to a patient’s wishes.40,48 In addition, patients who are criti‑ cally ill might be unlikely to survive an intervention, or the intervention could simply prolong poor quality of life; both scenarios result in harm to the patient, their family, health-care workers, and society.

Determining the wishes of patients The major reasons cited for inappropriate admission to a CICU, with subsequent initiation of potentially futile advanced life support, are lack of timely and effective communication between some clinicians and their patients, together with clinical doubt regarding the potential benefit of admission.49 The result is that patients receive care inconsistent with their true wishes, and are admitted to a CICU without a realistic discussion of the alternative options, including the possibility of no active treatment. Whether primary care phys­icians, cardio­ logists, intensivists, or palliative care ­clinicians should lead these discussions with patients, and at what point in their care, is uncertain. The evidence is, however, that clinicians are generally poor at predicting patient pref‑ erences without direct consultation,50 and therefore the traditional clinician-based, paternalistic approach to decision-making seems to be inappropriate. Adult patients usually have decision-making capac‑ ity in the initial phases of chronic disease; therefore, determining their goals for care early in their manage‑ ment is essential. Such advance planning provides an oppor­tunity for patients to maintain control over their medical care, and make informed decisions about future life-sustaining treatment while they are able to do so. When undertaken by appropriately trained staff, ongoing advance care planning has been shown to improve endof-life care from the perspective of the patient and family, with reduced stress, anxiety, and depression in surviv‑ ing relatives.51,52 The concept of advance care planning is supported by national legislation in several countries, and endorsed by many professional bodies.9,53 However, despite the supporting evidence and widespread legal acceptance of advance care planning, a number of chal‑ lenges exist, mainly relating to a lack of knowledge

about the process among health-care practitioners and patients.54 The investigators of the Study to Understand Prognoses and Preference for Outcomes and Risks of Treatment (SUPPORT)55 reported that 37–58% of criti‑ cally ill patients do not wish to discuss their preferences for cardiopulmonary resuscitation (CPR), and many physicians fail to raise the subject. Most patients had not made an advance decision about their care, and the wishes of those who had made advance care directives were inconsistently followed or subject to misinterpret­ ation by clinicians.55 Perceptions about the goals, benefits (including the likelihood of success), and the potential adverse effects and complications of interventions can be discordant between health-care providers and patients.56 The process of advance care planning should ensure that patients and their families understand the decis­ ions that they are making, although this aim is not always achieved, even by experienced clinicians.51 In the ­critical-care setting, patients often have strong views about treatments that they poorly understand; one-fifth of such patients do not understand the implications of ventilation, one-quarter are unable to identify features of CPR, and over one-third substantially overestimate sur‑ vival to hospital discharge,55 which could be partly related to in­accurate media portrayal of CPR.57 For advance care planning discussions to be meaningful, they should begin as early as possible in a patient’s care, and cardiologists would benefit from specific training in this respect. 58 Patients and their families require support, inform­ation, and access to specialist expertise to understand the real‑ istic benefits and burdens of critical care. These factors, together with changes in attitudes and behaviours of health-care providers to protect the rights of patients to refuse life support, would help to ensure that CICU a­dmission occurs only when truly desired by patients.48 In situations where patients with acute cardiac disease will not benefit from, or do not want, admission to the CICU, appropriate alternative care must be provided. The management pathways for such patients are not as simple or well-defined as those for CICU admis‑ sion. However, the benefits to patients and society are clear and include improved pain control, discussion about end-of-life and palliative care, referral to hospice services, and fewer invasive investigations, as well as reduced financial costs.59 Integration of cardiology and palliative care teams to determine optimal end-of-life care, including preferred place of death, has been shown to be feasible in patients with heart failure, 60 and this model could be equally applicable to those with moreacute disease.61 The use of shared decision-making and advance care planning (discussed in greater detail later) integrated throughout the course of the patient manage‑ ment pathway, is likely to be the best means of avoid‑ ing inappropriately aggressive treatment and providing optimal (non-CICU) patient care.

Determining futility in the CICU Once admitted to a CICU, decisions about which treatments should be initiated and continued are fairly straightforward. However, changing the aim of

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REVIEWS Box 1 | Relationship between coded physician behaviours and shared decision-making Providing medical information ■■ Discuss the nature of the decision: what is the essential clinical issue? ■■ Describe treatment alternatives: what are the clinically reasonable choices? ■■ Discuss the pros and cons of the choices: what are the pros and cons of the treatment choices? ■■ Discuss uncertainty: what is the likelihood of success of treatment? ■■ Assess family understanding: is there a working understanding of the decision? Eliciting patient values and preferences ■■ Elicit patient values and preferences: what is known about the patient’s medical preferences or values? Exploring the family’s preferred role in decision-making ■■ Discuss the family’s role in decision-making: what role should the family have in making the decision? Families should be offered a role in decision-making even if some will decline, preferring to defer to the physician. ■■ Assess the need for input from others: is there anyone else the family would like to consult? Deliberation and decision-making ■■ Explore the context of the decision: how will the decision affect the patient’s life? ■■ Elicit the family’s opinion about the treatment decision: what does the family think is the most appropriate decision for the patient? Permission obtained from White, D. B., Braddock, C. H. 3rd, Bereknyei, S. & Curtis, J. R. Toward shared decision making at the end of life in intensive care units: opportunities for improvement. Arch. Intern. Med. 167, 461–467 (2007). Copyright © 2007 American Medical Association. All rights reserved.72

management from restorative to palliative care (the transition from cure to comfort) is one of the mostchallenging aspects of intensive care practice. Two con‑ siderations act to maintain this position: the first is the overwhelming will of humans to live, and the second is the challenge for physicians accurately to predict when death is inevitable.62 Prognostication among patients in the ICU is notoriously difficult, with a number of scoring systems devised primarily for between-unit comparisons rather than predicting outcomes on an individual patient basis.63 The unpredictability of cardiac disease com‑ pounds the situation. Determining the point at which life-sustaining treatment is no longer useful is, there‑ fore, difficult. As previously discussed, the definition of medical futility is unclear; health-care professionals apply different criteria at different times, and disagree‑ ment between doctors and nurses is common.64 Frick and colleagues showed that, compared with doctors, nurses are generally more pessimistic about patient prognosis, but more accurate in their assessment, although overall prediction of future quality of life was unreliable in both groups of health-care providers.64 One of the main aims of intensive care is to ensure that, when an illness is overwhelming or when the decision is taken not to continue life-sustaining treat‑ ment, compassionate care is provided to a dying patient and their family.53 A number of reasons are cited by health-care practitioners for the continuation of care that has been deemed to be futile, the majority relating to the personal feelings of the practitioners and insti‑ tutional barriers, rather than the wishes of a patient or their family.65 Indeed, one of the major concerns from nursing staff regarding patient management in the ICU is that the decision to continue treatment is made on the basis of the needs and perceptions of physicians rather 726  |  DECEMBER 2013  |  VOLUME 10

than patients.66 Further barriers to managing futility and subsequent end-of-life care in the ICU identified by nursing staff include time constraints and staffing patterns.66 Knowledge of these barriers provides a way to identify how end-of-life decision-making, including appropriate withdrawal of life-sustaining treatment, can be improved. Proposed interventions include develop‑ ment of a shared decision-making model,67 with regular family meetings,68 high-quality ethical consultation and support,69 integration of a palliative-care specialist into the intensive-care team,65 appropriate organizational and institutional structures and policies, 65 improved legal education,18 and specific training in end-of-life c­ommunication skills.58,65

Decision-making processes in the CICU In the early years of critical care, the ethical principles of beneficence and nonmaleficence supported the largely paternalistic approach of physicians in their decisions regarding whether patients should be admitted to the CICU. Increasingly, the pivotal role of high-quality, patient-centred care is recognized, and the principle of respect for patient autonomy has come to dominate medical practice in many countries.48,49 However, as we have shown, much intensive-care treatment remains physician-centred rather than based on patient prefer‑ ences. In December 2010, the Salzburg Global Seminar focused on the role that patients can and should have in making health-care decisions, resulting in publi‑ cation of the Salzburg statement on shared decisionmaking.70 This process involves active participation by patients in selecting appropriate management options on the basis of the best available evidence, using spe‑ cific decision-making­  tools in a structured manner. Shared d­ecision‑making differs from informed choice, where physicians merely provide patients with infor‑ mation about the treatment alternatives.71 One of the numerous benefits of shared decision-making is that patients are more likely than their doctors to defer or decline intervention, with no measurable impact on health outcomes or patient satisfaction. The process of true shared decision-making is regarded by some as the pinnacle of patient‑centred care.71 Not all patients admitted to the CICU are able to make decisions for themselves; therefore, family involvement in the decision-making process is important. Families can act as surrogate decision-makers for patients. However, in some situations, the process remains patern­alistic and, although decisions are influenced by the views of family and friends, a patient’s doctor makes the final decision. A shared decision-making model (Box 1) involving families has been proposed for use in intensive care, in particular where a poor outcome is expected.72 Although the process of shared decision-making is time consuming, and requires training and the use of spe‑ cific tools (including decision aids), this approach has been demonstrated to have a modest association with improved family satisfaction, an acknowledged marker of quality in intensive care.72,73 The incidence of anxiety, depression, and post-traumatic stress disorder is high



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REVIEWS among families of patients admitted to the ICU.74 Any strategy that can improve family experience, particularly when a patient is not likely to survive, is likely to be ben‑ eficial, and algorithms to assist in the decision-making process at the end of life have been proposed (Figure 1). The shared decision-making model has been shown to be most useful when withdrawal of treatment is believed to be the best option for a patient.72 In situations where such strategies are adopted, persistent disagreement between health-care professionals and patients and their families is rare.75 However, if persistent disagreement does occur, ethical consultation can be of help.

Ethical support The decision to withdraw life-sustaining treatment should be based on the ethical principles of autonomy, ben­ eficence, nonmaleficence, and distributive justice. Conflict between health-care providers and patients (or, in some countries, surrogate decision-makers) tends to arise from either inadequate understanding on the part of the healthcare provider or the family, or differences in underlying values between parties.75,76 Although the involvement of ethicists in end-of-life decision-making is not universal, formalized ethics consultations have been developed to support conflict resolution when disagreements arise about patient management in Norway and Canada.69,75–77 Ethics consultation has been described by S­chneiderman and colleagues as “a service provided by an individual con‑ sultant, team, or committee to address the ethical issues involved in a specific clinical case. Its central purpose is to improve the process and outcomes of patient care by helping to identify, analyse, and resolve ethical prob‑ lems.”69 Ethics consultation can be of use in determining organ donation policies; deciding whether to withdraw life-prolonging treatment; providing assistance with com‑ munication and conflict resolution, in particular where a patient or their family request an intervention that clin­ icians consider to be futile; clarification of the legal pos­ ition in each individual case, including relevant national and regional case law and statutes as well as human rights; and, finally, in empowering family members to remind clinicians of their obligation to provide only those treatments that benefit a patient (including comfort care). Clinical ethics committees might also be involved in communication of current and relevant information to staff, review of clinical policies related to ethical issues in the CICU, counselling and support for staff, and dis‑ cussion of resource allocation.78 Although not univer‑ sally available and with a limited, but emerging, evidence base, ethics consultations are associated with reductions in the duration of stay in the hospital and CICU, and in the use of life-sustaining t­reatment among patients with terminal disease.54,62,65,69,77

Palliative care in cardiac and intensive care Intensive care and palliative care are multidisciplinary subspecialties that have developed in parallel with the apparently contrasting goals of cure and care. The main tenets of palliative care are shown in Box 2.79 Having erroneously become synonymous with end-of-life

What is the patient’s preferred goal of treatment? Focus: treatment goal

Are the chances of achieving this goal realistic?

What are the alternative goals of treatment? No

Futility as factual judgement

No

Futility as value judgement

Yes Does the benefit of this goal outweigh the risks and burdens associated with the intervention required to achieve the goal?

Focus: treatment measure

Assessment by the physician Physician’s recommendation and deliberation with the patient Assessment by the patient

Yes

Perform the intervention and review the decision regularly

Figure 1 | Schematic algorithm of shared treatment decision-making in intensive care. The focus is first on treatment goals and then on specific treatment measures. The green box contains the question to be answered by the patient or their surrogate. The pink box contains the question to be answered by the physician. The blue boxes contain questions to be answered by the physician and the patient (or their surrogate) together. Reproduced from Jox, R. J. et al. J. Med. Ethics 38, 540–545 (2012), with permission from BMJ Publishing Group Ltd.

care for incurable malignancy, palliative care has not been regarded as applicable or appropriate for patients with acute cardiac disease or for critically ill patients with cardiac disease, where the emphasis is on intervention and active treatment. In oncology, palliative care is provided early in the course of illness in conjunction with other therapies intended to prolong life, such as chemotherapy or radiotherapy. This concept of pallia‑ tive care is radically different from that considered by many interventional cardiologists and intensivists. The WHO defin­ition of palliative care is: “an approach that improves the quality of life of patients and their fami‑ lies facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, including physical, psychosocial, and spiritual issues”.79 Palliative care is proposed by various societies as being the stand‑ ard of care for all individuals affected by life-limiting or life-threatening conditions, including organ failure and critical illness.33,53,80 Referral rates from cardiology to palliative care have remained low for over half a century, despite the consid‑ erable evidence base that patients with cardiac disease have substantial palliative care needs.33,81 Reasons cited for this lack of referral include the unpredictable nature of the disease trajectory, lack of clear referral criteria, lack of nononcologic palliative care expertise and avail‑ ability, and unwillingness by cardiology and criticalcare teams to acknowledge the role of palliative care.81 Involvement of the palliative care team in the ICU has been shown to improve symptom control and patient and family satisfaction, as well as to reduce duration of hospital stay and the rate of in-hospital death.77

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REVIEWS Box 2 | Tenets of palliative care80 ■■ ■■ ■■ ■■ ■■ ■■ ■■

■■ ■■

Provides relief from pain and other distressing symptoms Affirms life and regards dying as a normal process Intends neither to hasten nor postpone death Integrates the psychological and spiritual aspects of patient care Offers a support system to help patients to live as actively as possible until death Offers a support system to help the family to cope during the patient’s illness and in their own bereavement Uses a team approach to address the needs of patients and their families, including bereavement counselling if indicated Will enhance quality of life, and might also positively influence the course of illness Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications

Permission obtained from WHO. Cancer. Palliative Care [online], http://www.who.int/cancer/palliative/en/ (Accessed 10 October 2013).

Guidelines for the management of patients with heart failure9 and for intensive care53 now recommend the early application of palliative care for symptom control, to run in parallel with curative and restorative treatment, thereby minimizing the difficulties for intensivists in the transition from active treatment to comfort care.33 In heart failure, advance care planning and palliative care are increasingly integral to specialist services and should be incorporated throughout a patient’s management pathway, resulting in a reduced rate of in-hospital death and improved costeffectiveness.60,61 However, the referral rate for specialist heart-failure care remains disappointingly low (20% in a survey conducted in the UK82); therefore, patients with heart failure are possibly being denied such treatment. Inclusion of palliative care is now regarded as a mar­ker of quality in intensive care.80 In addition, a number of clearly defined, evidence-based care processes are measurable as markers of quality in ICU palliative care itself.83 Disappointingly, even when available in the ICU, essential components of these processes are inconsistent and often absent. A number of barriers to implement­ ation of palliative care in the ICU have been identified.84 Some are personal, including unrealistic expectations of health-care professionals, patients, and families, and the inability of some clinicians to accept any level of prog‑ nostic uncertainty. Others are institutional, relating to a lack of, or delays in, provision of palliative care needs, as well as increasing subspecialization and separation of health-care teams.84 A high proportion of clinicians con‑ sider that strategies proposed to overcome these barriers are likely to be successful in improving end-of-life care.86 However, the general lack of availability of such strategies presents a barrier to their implementation.86 As recogni‑ tion of the importance of high-quality palliative care in the CICU continues to increase, to deny critically ill patients with cardiac disease and their relatives such care must be regarded as substandard and inequitable. 728  |  DECEMBER 2013  |  VOLUME 10

Organizational implications for policy Organizational and institutional structures are frequently quoted by health-care professionals as barriers to deliv‑ ering high-quality end-of-life care in the ICU.85 In the USA, literature-based policies and guidelines provide a national framework for end-of-life care,80 and have been shown to be useful in conflict resolution as well as increasing physicians’ knowledge of ethical and legal issues.85 Despite the lack of consensus regarding the definition of futility, many institutions have developed local policies and guidelines to overcome this barrier, taking into account the law and the fundamental rights of the individual as set out in the Universal Declaration for Human Rights.86 Local policies often pertain to ‘do not resuscitate’ (DNR) orders, advanced decisions, and withdrawal of life-sustainin­g treatment. The legal back‑ ground and interpretation of DNR orders varies between countries and states in relation to what is acceptable and permissible, reflecting ethical, cultural, and religious differences. The requirement for discussion with a patient, and the role of family and friends in influencing this decision-making process, also varies. By contrast, advance care decisions are legally binding on clinicians, provided that they are applicable and valid and relate to the current situation of a patient. In the USA, three ethical principles shape current policies on the withdrawal of life-sustaining treatment.33 ‘Withholding’ and ‘withdrawing’ life-sustaining therapies are recognized to be equivalent, although an important distinction exists between killing a patient and allow‑ ing them to die. The doctrine of ‘double effect’ provides an ethical rationale for providing relief from symptoms, even when such treatment might have the predictable (but unintended) result of hastening death.33 The use of implantable cardioverter–defibrillators (ICDs) in patients with heart failure provides a particular chal‑ lenge. Goldstein and colleagues reported that, although the majority of physicians considered discussing deacti‑ vation of ICDs at the end of life, such discussions took place with fewer than 45% of patients, even when an active DNR order was in place.87 Furthermore, results from a survey conducted in Europe demonstrated an inconsistent approach to ICD deactivation. 88 Active discussion of the possibility of later deactivation at the time of device implantation was reported by a minority of centres (4%).88 The conclusions from the individuals who performed the survey were that “real-world care is very different from what is considered optimal care as far as ICD deactivation is concerned”.88 In the UK, care pathways have been developed to improve the quality of patient care in the last days and hours of life, increase knowledge within the multi­ disciplinary team about the process of dying, and ensure consistency of practice.89 However, such pathways must be adapted to the institution and individual patient. Limiting care pathways to immediately life-threatening disease misses the opportunity for a patient to participate in a shared decision-making process throughout their illness. Advance care decisions should be phased accord‑ ing to the stage of the disease. Further research is needed



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REVIEWS as to how and by whom such care should be delivered. A lack of understanding of such pathways and the pro‑ cesses involved, poor communication between doctors and patients and their relatives, as well as to the general public, and inappropriate application of such pathways has led to understandable loss of public confidence in the process, associated with widespread condem­ nation in the press.90 Policies and guidelines related to futility must have a sound basis in law and ethics while remaining patient-centred, balancing the effectiveness, benefits, and potential risks and adverse effects of any intervention, and being transparent in their application. Where conflict exists, ethics committees are only one of a number of potential solutions. Little dispute exists that clinicians should act in the best interests of patients, but the challenge is to determine what these interests are and whether they supersede the interests of others.91 Although basic training in medical ethics should be mandatory for all staff, senior clinicians in cardio­logy intensive care and other specialties need advanced skills in this area. Every CICU should have access to an expert in ethics as part of the clinical decision-making team, with the potential to provide staff, patients, and families with ethical advice. Ensuring that patients experience a ‘good death’ should be as important a part of the mission of any health-care organization as providing active, and often curative, treat‑ ment for those patients who will benefit.66 Corporate phil­ osophy is vital in providing the infrastructure to support staff who are engaged in end-of-life care, including after death. Although standard in many specialist cancer ­hospitals, this attitude is rare in ­cardiothoracic units.

Conclusions Society is rightly questioning intensive, aggressive care that focuses on survival and physiological variables while neglecting patient-centred outcomes.92 The very nature of intensive-care medicine provides challenges to con‑ ducting high-quality research. Both observational and experimental research methods have been proposed, particularly regarding treatments that relate to symptom control and quality of life, rather than simple measures such as mortality and length of hospital stay.93 Measures of quality of care in patients with life-threatening or life-shortening illness, concordance of a patient’s pref‑ erence for treatment with that which they receive, and the quality of communication are important outcomes. The applicability of measures known to improve these 1.

2.

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Braunwald, E. Evolution of the management of acute myocardial infarction: a 20th century saga. Lancet 352, 1771–1774 (1998). Price, S. The changing role of the coronary care unit cardiologist [Spanish]. Rev. Esp. Cardiol. 64, 453–455 (2011). Morrow, D. A. et al. Evolution of critical care cardiology: transformation of the cardiovascular intensive care unit and the emerging need for new medical staffing and training models: a scientific statement from the American Heart Association. Circulation 126, 1408–1428 (2012).

4.

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outcomes in critically ill patients with cardiac disease needs to be evaluated. As for patients with malignancies, patients with cardiac conditions should have a co-ordinated, patientcentred approach to their treatment. At the time of diag‑ nosis, shared decision-making, advance care decisions, timely referral for palliative care, and a realistic approach to the benefit of any intervention to a patient should be routine.6 Choosing to withhold these provis­ions of care until a patient is dying, while continuing to undertake interventional procedures, should be regarded as neg‑ ligent. The failure of some cardiologists and intensivists to fully adopt practices that have been shown to improve the care of patients with other life-threatening diseases is multifactorial, but the resulting inequity is evident. Providing patients with cardiac disease with the treat‑ ment that they deserve, on the basis of their symptoms and prognosis as well as their diagnosis, requires a seachange of opinion from health-care policy makers, insurance companies, cardiologists, intensivists, and the public. The implications for reduction in harmful treat‑ ment, unnecessary interventions, CICU admissions, and costs to patients, their families, and society are clear. Review criteria We searched the MEDLINE, PubMed, EMBASE, and CINAHL databases for full-text articles published in English between January 2003 and June 2013. Key words included: “cardiac”, “intensive care”, “futility”, “prognosis”, “mortality”, “heart failure”, “cardiogenic shock”, “cardiopulmonary resuscitation”, “palliative care” alone and in combination with “advance decision”, “advance directive”, “attitudes”, “barriers”, “cardiac arrest”, “cardiac care”, “cardiac intensive care”, “cardiogenic shock”, “cardiology”, “care pathways”, “communication”, “conflict resolution”, “consent”, “coronary care”, “decision(s)”, “decision-making”, “decision-making tools”, “decision support techniques”, “decision support techniques”, “DN(A)R”, “do not resuscitate”, “education”, “end-of-life”, “equality”, “equity”, “ethics”, “ethics consultation”, “end-of-life”, “end-of-life plan”, “gold standard”, “good death”, “guidelines“, “harm”, “informed consent”, “life-sustaining care”, “life-sustaining treatment”, “outcomes”, “patient”, “patient-centred”, “patient preference”, “patient wishes”, “policies”, “prognosis”, “rationing”, “quality markers”, “shared decision-making”, and “withdrawal”. We additionally selected references on the basis of our own expertise, and searched the reference lists of selected articles for further relevant papers.

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Author contributions S. Price researched data for the article. S. Price and E. Haxby substantially contributed to discussion of content, wrote, and reviewed and edited the manuscript before submission.

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