Original Manuscript
Normativity under change: Older persons with implantable cardioverter defibrillator
Nursing Ethics 1–11 ª The Author(s) 2015 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014564906 nej.sagepub.com
Jette Rolf Svanholm, Jens Cosedis Nielsen, Peter Thomas Mortensen, Charlotte Fuglesang Christensen and Regner Birkelund Aarhus University Hospital, Denmark
Abstract Background: In modern society, death has become ‘forbidden’ fed by the medical technology to conquer death. The technological paradigm is challenged by a social-liberal political ideology in postmodern Western societies. The question raised in this study was as follows: Which arguments, attitudes, values and paradoxes between modern and postmodern tendencies concerning treatment and care of older persons with an implantable cardioverter defibrillator appear in the literature? Aims: The aim of this study was to describe and interpret how the field of tension concerning older persons with an implantable cardioverter defibrillator – especially end-of-life issues – has been expressed in the literature throughout the last decade. Methods: Paul Ricoeur’s reflexive interpretive approach was used to extract the meaningful content of the literature involving qualitative, quantitative and normative literature. Analysis and interpretation involved naive reading, structural analysis and critical interpretation. Ethical considerations: The investigation complied with the principles outlined in the Declaration of Helsinki. Findings and discussions: The unifying theme was ‘Normativity under change’. The sub-themes were ‘Death has become legitimate’, ‘The technological imperative is challenged’ and ‘Patients and healthcare professionals need to talk about end-of-life issues’. There seems to be a considerable distance between the normative approach of how practice ought to be and findings in empirical studies. Conclusion: Modern as well as postmodern attitudes and perceptions illustrate contradictory tendencies regarding deactivation of the implantable cardioverter defibrillator and replacement of the implantable cardioverter defibrillator in older persons nearing the end of life. The tendencies challenge each other in a struggle to gain position. On the other hand, they can also complement each other because professionalism and health professional expertise cannot stand alone when the patient’s life is at stake but must be unfolded in an alliance with the patient who needs to be understood and accepted in his vulnerability. Keywords Dilemmas, older people, end of life, ethics, implantable cardioverter defibrillator, sociology
Corresponding author: Jette Rolf Svanholm, Aarhus University Hospital, Brendstrupgaardsvej 100, Aarhus N., 8200 Denmark. Email: [email protected]
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Introduction To be a human being means to be subject to dualism including coming into existence by interacting with others and through one’s own self-actualization.1 This condition is a challenge for older patients with an implantable cardioverter defibrillator (ICD), as the development of society expects that patients are increasingly aware of own preferences and have knowledge of own wishes – also concerning end-of-life decisions.2 This challenges healthcare professionals because they have to consider the ethical and legal obligation of involving the patient in their professional assessment, which covers many other aspects.3 An ICD is used in primary or secondary prophylaxis of ventricular arrhythmia. The ICD can prevent the patient from dying as a consequence of the arrhythmia by inducing a shock to normalize the heart rhythm; thus, the ICD can have a life-saving function.4 However, in older people, it is likely that symptoms of heart failure or co-morbidities progress5,6 possibly impacting negatively on their quality of life.7 Changes in the perception of death have been an ongoing sociological and historical issue since the early 1970s.8,9 According to Philippe Arie´s,8–10 a French expert in history of death, perception of death in the Western societies has changed from a holistic and religious understanding to a more specialized and technical–scientifical understanding. Human mortality is a fact of life – but the circumstances and the time for every single person’s death can be manipulated medically, socially and psychologically.11 Death in modern society is understood as the definitive end, as the last step in a process that takes place in the ageing body. It has become individualized, a taboo; it is being repressed and connected to fear and thereby ‘forbidden’.8,10 Using ICDs with a lifeprolonging perspective, there is a risk that healthcare professionals focus too much on the technical aspects of being an ICD patient at the expense of the patient as a person.12 In other words, there is too little focus on including the patient’s perspective on his or her own situation in decision-making related to being an ICD patient. Patient-centered treatment and care require dialogue between patient and healthcare professionals about treatment options and about the consequences of these choices. In this connection, it would be relevant if the dialogue also included the supportive and palliative precautions which can be offered as an alternative to ICD treatment. The technological paradigm is challenged by the social-liberal political ideology in postmodern Western societies where each individual has become responsible for decisions related to his own life.10 Opposite to the modern understanding of death where there is a tendency that medicine has the monopoly on death, the postmodern understanding of death gives a person’s self the authority to make ‘right decisions’.13,14 Individuals at 80 years of age and older is the fastest growing group in the Western countries. Heart disease is especially prominent in this population with a prevalence of 2%–3% in individuals at 65 years of age increasing to 80% for patients above 80 years of age.15 According to The United States National Registry, there were 339,076 ICDs implanted from 2006 to 2008 with increasing device implants year on year.16 The number of ICDs implanted internationally varies, with Europe having approximately one quarter of that in the United States. The annual incidence of appropriate ICD candidates in Europe is calculated to be somewhere in the range 750–1000 per million population.17 More than 20% of ICD devices are implanted in the older people 80 years of age.5,18 There is a growing prescription of ICDs in the older people with 42% of these patients being above 70 years and 12.4% being older than 80 years.19 The first ICD was implanted in a human being in 1980 in Baltimore, USA.20 Modern and postmodern tendencies in society increase the field of tension between dependency related to technical expertise of healthcare professionals and the independence related to self-actualization.14 When an older person with an ICD is expected to account for preferences and wishes in connection with his ICD treatment, it must be understood in light of the modern society’s focusing on treatment and repression of death. It must also be understood in light of the postmodern society’s focusing on the individual’s right and obligation to choose what is best for him or her concerning life and death. According to Kari Martinsen,21 2
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ethical dilemmas occur when technical–scientifical knowledge is used by healthcare professionals labelling the patient, and decisions are made strictly on this basis and the opposite when the obligation to decide is totally devolved to the patient. In this field of tension, the question raised in this study was as follows: Which arguments, attitudes, values and paradoxes between modern and postmodern tendencies concerning treatment and care of older persons with an ICD appear in the literature?
Aim The aim of this study was to describe and interpret how the field of tension concerning older persons with an ICD – especially end-of-life issues – has been expressed in the literature throughout the last decade.
Study design and methods In our interpretation, we are inspired by Paul Ricoeur’s reflexive interpretive approach.22–25 The interpretive approach was used to extract the meaningful content of the literature, understood in a broad way involving qualitative, quantitative and normative literature (including editorial comments and expert consensus statements). It is the understanding of the text of the author of each source; his or her aim, attitudes and values in relation to older people with an ICD and his or her argumentation and message with the article that will constitute the data sample to be analysed and interpreted. According to Ricoeur and colleagues,22,23 inclusion of sources in this study depends on the degree to which the single source is relevant and meaningful in relation to the aim of the study. Therefore, the sources from the literature search which were not significantly relevant in relation to the aim of the study were excluded. We searched the databases PubMed, PsykInfo and CINAHL. The following are the limitations: (a) Language – English, Danish, Swedish, Norwegian; (b) age – 80 years and over (80þ years) and (c) publication date – from 01 January 2006 to 31 December 2012. Several search strings were made using the following keywords: ‘defibrillator, implantable’ or ‘implantable cardioverter defibrillator’ combined with (a) ‘health care professionals’ or ‘health personnel’ or ‘nursing’; (b) ‘ethics’ or ‘communication’ or ‘interpersonal communication’ or ‘interpersonal relation’ and (c) ‘terminal care’ or ‘end-of-life’ or ‘palliative care’. Titles or titles and abstracts were read by the first author (J.R.S.). A total of 49 sources were screened for relevance. When they concerned older persons with an ICD combined with attitudes, values and paradoxes regarding end-of-life or ethical issues, they were discussed with R.B. to ensure consensus about inclusion. A total of 27 sources were included. The investigation complied with the principles outlined in the Declaration of Helsinki.26 The study was approved by the Danish Data Protection Agency as part of a larger research study.
Analysis and interpretation The results of this study are based on a three-stage process of analysis and interpretation inspired by the hermeneutical–phenomenological theory of interpretation by the French philosopher Paul Ricoeur22,24 involving naive reading, structural analysis, critical interpretation and discussion.22,23,25 The naive reading contributed to an initial understanding of each source and a holistic understanding of what the source was about. Each source was read and reread, and immediate impressions were noted and discussed by the first author (J.R.S.) and fifth author (R.B.). The reading provided an overview and opened up areas meaningful to the aim of our study. Subsequently, the naive reading involved comparing the sources creating an impression of the sources as a whole. 3
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Structural analysis means that the text is structured into meaningful and significant units.22,23,25 The extracted meaning units are illustrated by quotes of ‘what the text says’ and afterwards the text is moved to an understanding of ‘what the text speaks about’ according to Ricoeur’s22 theory of interpretation: ‘to understand a text is to follow its movement from meaning to reference: from what the text says to what it speaks about’. The main idea in Ricoeur’s22 phenomenological hermeneutic interpretation of texts is to open up a new world in front of the text, which means to come to an understanding of a text. The meaning units in the structural analysis were grouped into themes. The unifying theme was ‘normativity under change’. A further division led to the sub-themes ‘Death has become legitimate’, ‘The technological imperative is challenged’ and ‘Patients and healthcare professionals need to talk about end-of-life issues’. The next step in the interpretation process, the critical interpretation, makes a comprehensive and understandable interpretation of the unifying theme and sub-themes. The themes are finally discussed in relation to the pre-understanding of Western societies focusing on modern and postmodern tendencies concerning treatment and care of older persons with an ICD.
Findings Normativity under change The unifying theme ‘Normativity under change’ means that the current practice regarding treatment and care for older persons above 80 years of age with an ICD is challenged by healthcare professionals, clinicians as well as researchers, arguing for a more natural relationship to death for both patients and healthcare professionals. A sharp criticism is raised towards healthcare professionals unable to enter into a dialogue with ICD patients and relatives to talk about issues concerning death and end of life. It is also argued that clinical trials of persons above 80 years of age with an ICD ought to be promoted to strengthen the understanding of the advantages and the disadvantages of ICD treatment. It is anticipated that decision-making will be more clear, differentiated and many-faceted also by including ethical and economical considerations.
Death has become legitimate In recent years, ‘quality of death’ in relation to persons with an ICD27 has been on the healthcare agenda, and an increasing number of scientific articles have been critical to existing practices concerning older people with an ICD and end-of-life issues. There seems to be an indirect or direct argumentation to legitimize death in ICD patients in relation to the following: Deactivation of the shock function.13,28–33 Questioning replacement of the ICD.19,34,35 Deactivation of the shock function. At the end of life, an ICD can cause discomfort as ICD shocks can cause pain and anxiety and may not prolong life with an acceptable quality. It is appropriate to consider ICD deactivation as a patient’s clinical status deteriorates and death is near. A review28 demonstrates (a) that deactivation is widely debated and (b) that a changed normativity due to deactivation of the ICD is currently implied in scientifically based recommendations. According to the Heart Rhythm Society (HRS)/European Heart Rhythm Association (EHRA) consensus statement on management of cardiovascular implantable electronic devices, ‘the primary aim with deactivation is to respect the patient’s right to live, or at least to die with dignity, while limiting any therapeutic action that increases the patient’s level of stress, pain or anxiety’.36 Protection of the values ‘respect’ and ‘dignity’ in relation to the patient is the ethical argument 4
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verbalized to legitimize death as an option by deactivating the ICD in patients nearing end of life to improve the patient’s dying process. In an article by Snipes et al.,13 the message was addressed directly to patients and their relatives concerning the question ‘How do I handle death and dying issues with my implantable cardioverter defibrillator (ICD) and cardiac pacemaker?’ The purpose of raising the question was to make it legitimate to patients at the end of life to deny the risk of painful shocks and to seek a more peaceful death. The article answers potential questions for patients about end of life with an ICD. It is an example of how to communicate with patients and their relatives about this sensitive issue at the same time embedding the message to patients and their relatives as well as healthcare professionals that a peaceful death is possible by getting the ICD deactivated.13 A strong signal about involving patients in decision-making regarding their ICD treatment, also to stop treatment and to allow for both a healthcare professional and for the patient and his or her relatives to talk about death and have wishes and preferences for the end-of-life process is legitimizing death as an option. Questioning replacement of the ICD. A study reported ‘ . . . that little consideration has been paid to what happens in the years after implantation when ICD batteries require replacement, device leads become defective, or systems become infected’. The question is raised as follows: ‘Should all these patients receive a replacement?’34 It was argued (a) that patients and their families should be made aware that device replacement is not obligatory and (b) that from both a patient and a societal perspective, the expense and uncertainty of ICD therapy call for a more patient-centered approach which will inevitably reduce costs even though it promotes individualization of a highly personal process.34 The cost-saving arguments are also used by Wright et al.,19 underlining the issue to replace a generator approaching ‘end of life’ at a time when little expected improvement in quality and lifespan for the patient is to be balanced against the costs and complications of replacement. Contrary to the normative legitimizing of death, empirical studies, however, show a reality where deactivation of the ICD and an opening towards death as an option are not natural issues for neither patients nor healthcare professionals. Many patients do not wish to get their ICD deactivated although they are close to the end of life or they do not wish to make a decision.33,37 Moreover, healthcare professionals find it difficult to bring up the topic of deactivation and talk openly with patients about death.19,38 There is a contradiction between theory, including ethical guidelines and moral algorithms, and practice, that is, between the tendency towards changed normative perspectives in the literature and the empirical reality unfolded in clinical practice. The repression of death in modern society still dominates the empirical reality. Medicine has the monopoly on death with an almost blind belief that at the end, development of medical science and technology can control or at least postpone death.9 The normative change is verbalized by another set of values where the individual patient is informed about treatment, including ‘non-treatment’ and thus to see death as an option.
The technological imperative is challenged ‘The technological imperative’ refers to the way decisions about appropriate therapy are driven by the availability and value provided by the newest and most advanced technological solutions.5 While ICD prevents sudden death from a potentially fatal arrhythmia, it contributes to prolong dying for patients with progressive symptomatic heart failure. In this way, ICD treatment is ironically a technology of life extension AND dying.5,6 With reference to the ‘technological imperative’, Kaufman et al.5 explored the paradox among the oldest age group focusing on the doctor–patient dialogue and patient and family deliberations about use of ICD. By using a structural–cultural framework, the study showed that the technological option of an ICD 5
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becomes an ethical obligation for physicians to treat and for patients to accept treatment, also when it concerns patients above 80 years of age.5 It was concluded that . . . clinicians are aware that treatment of the very old can be a double-edged endeavor yet they want and feel obliged to provide life-extending options, focusing on the risk of sudden death, sometimes regardless of patient’s age or extreme frailty. Some older persons with deteriorating health are ambivalent about going on living and do not easily authorize their own death by proactively stopping or rejecting a (potentially) life-saving therapy; this is what saying ‘no’ to technology has come to imply.5
Today, the technological imperative in medicine is bolstered by the value assigned to evidence-based studies, primarily clinical trials. Technical ability to reduce mortality becomes ‘best treatment’ and it outranks implications for quality of life.6 Evidence contributes to standard care through two cultural moves: from new technique to standard treatment and from standard treatment to ethical necessity.5 However, the evidence used to strengthen the technological imperative in older people with an ICD is weak. Only few cardiac device trials include patients 80 years with an ICD. It is still unknown whether prophylactic ICD therapy benefits older patients with severely impaired left ventricular function and a higher risk of dying of other causes than sudden death. Heart failure primarily affects older adults, and these patients are underrepresented in clinical trials. Clinical trials including persons older than 80 years with an ICD are thus warranted.15,18,39–43 The ethics of ICD deactivation has not been explored specifically for persons above 80 years of age although this patient population accounts for 20% of patients with implantable cardiac devices.5,18 The other part of the ironic technological imperative, the prolonged dying, suggests a patient-centered control of the dying process and a rejection of interventions to prolong the dying transition and cause pain and suffering at the end of life.5 According to Callahan,44 societal awareness of the overuse of technologies has most recently focused both on the problem of the prolongation of suffering and on the unsustainable increasing healthcare costs. The technological imperative is linked to the modern society dominated by a medical understanding of evidence,45 where the tendency is that death is repressed and the approach to patients is focused on technology at the expense of the patient as a person.12 The technological imperative comprises a need to treat which has become a part of the patient’s preferences governing the actions of healthcare professionals. The challenge of the technological imperative apparently includes a broader understanding of evidence verbalizing the ethical aspects in relation to treatment options and the patient’s suffering which become pivotal in the argumentation also involving cost analyses. ICD use as a technological imperative and the interpretation of it as ironic show the strong contradiction between the existing values in society. Modern tendencies are implied in seeking true knowledge through clinical trials about persons above 80 years of age with an ICD not only to justify use of ICD in the older people but also to create generalized knowledge about treatment to strengthen clinical decision-making. Postmodern tendencies are implied in the critical approach to ICD treatment as a technological imperative in the very older people because it complicates the experience of living, management of heart failure, endof-life care and the dying process, and thereby acknowledge death and dying processes as a natural part of life in the very older people.
Patients and healthcare professionals need to talk about end-of-life issues In the literature, informed consent is verbalized as the most important aspect in the relation between physician and patient. Physicians are ethically and legally obliged to ensure that patients are informed and involved in decision-making regarding diagnosis and treatment.29,46 According to Lampert et al., ‘informed 6
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consent’ derives from the ethical principle of respect for persons. Autonomy is maximized when patients understand the nature of their diagnosis and treatment options and participate in decisions about their care. Concerning both deactivation of the shock function29,47 and ICD replacement,19,34 ‘advance care planning’ is mentioned as an important tool that ought to be considered in decision-making. Advance care planning is understood as a process promoting patient autonomy. The patient identifies own values, preferences and goals regarding future healthcare. The planning should include a discussion of these values and preferences with healthcare professionals, documentation in the patient’s medical record.29,47 In this way, the patient is expected to be an important actor in the decision-making process. The advance care planning tool assumes that the patient is conscious of own values and preferences and is able to play an active role and make treatment-related decisions; evidence of this in clinical practice is, however, very limited.48 Empirical studies show that many older people and terminally ill patients with an ICD are not aware of the possibility of ICD deactivation and have never or not sufficiently talked with a physician about this.31,33,37,47,49 According to Goldstein et al.,37 this was the case even in the patients perceived to be near death or who had previously expressed a desire to limit life-prolonging therapy. Frequently, an ICD is implanted in older persons as a multifunctional device and often there is no plan for ‘end-of-life care’ and deactivation at the end of life.5 The patient perspective has been investigated by Goldstein et al.33 All patients believed that the device was exclusively beneficial and one patient described deactivation ‘as an act of suicide’. The reasons for not talking about deactivation vary. With increased knowledge about the management of withdrawal of potentially life-prolonging therapy, physicians are likely to become more skilled at caring for dying patients with an ICD. Moreover, the physicians refer to limited relations with the patient and to the technical nature of the ICD.31,32,50 Many patients do not want deactivation or at least they rely on the physicians’ decision-making. What they want is knowledge on how to prevent shocks and how to prevent sudden death.33,51 The conflicting relation between the intentional expressions based on legislation and ethical principles and the factual circumstances regarding the relation between healthcare professionals and patients indicate a paradox. The relation between the physician and the older patient is characterized by authority with the physician as the expert and the patient as depending on the advice of the physician making it difficult for the patient as well as the physician to change behaviour. When physicians have not developed skills to communicate with dying persons, when they consider ICD treatment only as a technical matter and do not have a relation to the patient, it will maintain an understanding of death as a taboo in a healthcare setting – keeping the technological imperative alive.
Discussion and conclusion Modern as well as postmodern attitudes and perceptions have been uncovered in the analysis. As contradictory tendencies, they challenge each other in a struggle to gain a position.52 On the other hand, they can also complement each other because professionalism and health professional expertise cannot stand alone when the patient’s life is at stake but must be unfolded in an alliance with the patient who needs to be understood and accepted in his vulnerability.53 The older persons with an ICD are dependent on the meeting with the health professionals and the healthcare system to be able to find their own feet in the last phase of life. To prevent ethical dilemmas, the older people nearing the end of life depend on information about generalized knowledge on pros and cons regarding treatment with an ICD also considering any co-morbidities. They must know the risk of inappropriate shocks preventing the dying older people in having a natural death. They depend on the courage and the ability of healthcare professionals to talk about death as a sensitive issue and they depend on being understood with their references and fundamental values. Healthcare 7
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professionals need to be able not to label the patient but understand the patient and his or her concrete situation. By combining this knowledge together with scientific evidence, it is possible to support and facilitate a shared decision about ICD treatment, which is best for the patient. A changing normativity in this analysis demonstrates that the taboo and repression of death in modern societies8–10 is changing in two ways: (a) attention to using ICD as a medical technology may be an obstacle for death as a natural option and (b) every single person with an ICD nearing the end of life is obliged to make decisions about his own life and death; the authentic, emotional and personal issues are in focus as pointed out by Walter54 in his book The revival of death. In this way, postmodern characteristics are clearly verbalized in the normative literature and oppose the project of control of modern society radically. As shown in the analysis of empirical studies, older people rely on their physician to make decisions about their treatment. In this way, it is likely that existing roles between the doctor and patient are maintained. This indicates that the physician is perceived as the expert by the patient even when the physician is not focusing on the ethical perspectives of the power he displays. A review about decision-making among older people with advanced heart failure found that the concerns of the older people were more about the manner of dying and symptom control than the timing or place of death.48 If the older people opt out of ICD treatment, how will this affect his options for relief, help and support at the end of life and for palliative care? Palliative care is one of the most important but neglected public health issues of our time.55 In 2010, the Economist Intelligent Unit (EIU) made a report concerning ‘quality of death’ ranking end-of-life care across the world. It is stated that even where end-of-life issues can be openly discussed, the obligations implied by the Hippocratic Oath do not fit easily with and is crucial to the demands of end-of-life palliative care, supporting modern characteristics.56 Death has become medicalized and curative procedures are often prioritized ahead of palliative care. According to EIU, it is noticed that many developed countries lag behind: these include Denmark, Italy, Finland and South Korea. In these countries, the quality and availability of palliative care are often poor and policy co-ordination is lacking.56 Despite this, many of these countries have an increasing longevity and an ageing population and thus an increased demand for endof-life care. It is also pointed out that global education and training in palliative care is rare in healthcare education curricula.56 The structures in society do not establish a safety net for the older persons nearing the end of life who have rejected the possibility of life-prolonging treatment with an ICD. Even though it is attempted to make the concept of death a more natural part of human life, the political structures in the Western world concerning healthcare and welfare for dying persons do not consequently support that tendency. Future research should focus on the importance and consequences of existing treatment ideologies for older patients with an ICD and their relatives concerning end-of-life issues. By focusing the construction of roles and collaboration between patient and healthcare professionals regarding death and end-of-life issues, new human professional approaches and tools are to be developed and tested to prevent ethical dilemmas and to support shared decision-making. Finally, palliative interventions and approaches to patients with or without the shock function of an ICD are to be developed and tested. With this literature study which methodologically is inspired by Ricoeur’s theory of interpretation, it has not been the purpose to create an objective and definitive truth. According to Ricoeur, it is not possible in the science of interpretation. On the contrary, it has been the purpose to understand and interpret some central aspects of the way patients with an ICD are perceived and described in the literature throughout the last decade. Conflict of interest The authors declare no conflicts of interest. 8
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Funding This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. References 1. Pahuus M. Livsfilosofi, Lykke og Lidelse i Eksistens og Litteratur [Philosophy of Life: happiness and suffering in being and in literature]. Aarhus: Philosophia, 1995. 2. Drought TS and Koenig BA. ‘Choice’ in end-of-life decision making: researching fact or fiction? Gerontologist 2002; 42(Spec No. 3): 114–128. 3. Epstein AE, DiMarco JP, Ellenbogen KA, et al. ACC/AHA/HRS 2008 Guidelines for Device-Based Therapy of Cardiac Rhythm Abnormalities: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (Writing Committee to Revise the ACC/AHA/NASPE 2002 Guideline Update for Implantation of Cardiac Pacemakers and Antiarrhythmia Devices): developed in collaboration with the American Association for Thoracic Surgery and Society of Thoracic Surgeons. Circulation 2008; 117(21): e350–e408. 4. Goldberger Z and Lampert R. Implantable cardioverter-defibrillators: expanding indications and technologies. JAMA 2006; 295(7): 809–818. 5. Kaufman SR, Mueller PS, Ottenberg AL, et al. Ironic technology: old age and the implantable cardioverter defibrillator in US health care. Soc Sci Med 2011; 72(1): 6–14. 6. Goldstein NE and Lynn J. Trajectory of end-stage heart failure: the influence of technology and implications for policy change. Perspect Biol Med 2006; 49(1): 10–18. 7. Johansen JB, Pedersen SS, Spindler H, et al. Symptomatic heart failure is the most important clinical correlate of impaired quality of life, anxiety, and depression in implantable cardioverter-defibrillator patients: a single-centre, cross-sectional study in 610 patients. Europace 2008; 10(5): 545–551. 8. Aries P. The reversal of death: changes in attitudes towards death in Western societies. Am Quart 1974; 26(5): 536–560. 9. Arie`s P and Ranum PM. Western attitudes toward death: from the middle ages to the present. Baltimore, MD and London: The Johns Hopkins University Press, 1974. 10. Aries P. The hour of our death. London: Allen Lane, 1981. 11. Hu¨ppauf B. Prologue: death in the history of ideas in Western civilization. In: Crouch M and Hu¨ppauf B (eds) Essays on mortality Kensington. Sydney, NSW, Australia: University of New South Wales, 1985, pp 1–25. 12. Flanagan JM, Carroll DL and Hamilton GA. The long-term lived experience of patients with implantable cardioverter defibrillators. Medsurg Nurs 2010; 19(2): 113–119. 13. Snipes G, Roaman JZ and Sears SF. End of Life and Heart Rhythm Devices. How do I handle death and dying issues with my implantable cardioverter defibrillator (ICD) and cardiac pacemaker? Heart Rhythm Soc 2011; 1–4. 14. Walther T. Facing death without tradition. In:Howarth G and Jupp PC (eds) Contemporary issues in the sociology of death, dying and disposal. London: St. Martin’s Press, 1996, pp. 193–204. 15. Goldfinger JZ, Choi AD and Adler ED. Implantable cardiac defibrillators and cardiac resynchronization therapy for heart failure in older adults. Geriatrics 2009; 64(8): 20–29. 16. Hammill SC, Kremers MS, Kadish AH, et al. Review of the ICD Registry’s third year, expansion to include lead data and pediatric ICD procedures, and role for measuring performance. Heart Rhythm 2009; 6(9): 1397–1401. 17. John Camm A and Nisam S. European utilization of the implantable defibrillator: has 10 years changed the ‘enigma’? Europace 2010; 12(8): 1063–1069. 18. Swindle JP, Rich MW, McCann P, et al. Implantable cardiac device procedures in older patients: use and in-hospital outcomes. Arch Intern Med 2010; 170(7): 631–637. 9
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19. Wright GA, Klein GJ and Gula LJ. Ethical and legal perspective of implantable cardioverter defibrillator deactivation or implantable cardioverter defibrillator generator replacement in the elderly. Curr Opin Cardiol 2013; 28(1): 43–49. 20. Hauer RN. The dawn of a new era in the struggle against sudden cardiac death. Neth Heart J 2009; 17(3): 111–112. 21. Martinsen K. Care and vulnerability. Oslo: Akribe, 2006. 22. Ricoeur P. Fortolkningsteori. Kbh: Vinten. 1979. 23. Ricoeur P, Kemp P and Kristensson B. Fra˚n text till handling: en antologi om hermeneutik [From text to act: an anthology on hermeneutics]. Stockholm: Symposion, 1988. 24. Ricoeur P. Tekstmodellen – meningsfuld handling betragtet som en tekst [The text-model – meaningsful action seen as a text]. In: Hermansen M and Rendtorff J (eds) A hermeneutic bridge-builder - texts by Paul Ricoeur [A hermeneutic bridge-builder - texts by Paul Ricoeur]. Copenhagen: Klim, 2002, pp. 49–74. 25. Lindseth A and Norberg A. A phenomenological hermeneutical method for researching lived experience. Scand J Caring Sci 2004; 18(2): 145–153. 26. Rickham PP. Human experimentation. Code of ethics of the World Medical Association. Declaration of Helsinki. Br Med J 1964; 2(5402): 177. 27. Sears SF, Sowell LV, Kuhl EA, et al. Quality of death: implantable cardioverter defibrillators and proactive care. Pacing Clin Electrophysiol 2006; 29(6): 637–642. 28. Thanavaro JL. ICD deactivation: review of literature and clinical recommendations. Clin Nurs Res. Epub ahead of print 28 May 2012. DOI: 10.1177/1054773812443893. 29. Lampert R, Hayes DL, Annas GJ, et al. HRS Expert Consensus Statement on the Management of Cardiovascular Implantable Electronic Devices (CIEDs) in patients nearing end of life or requesting withdrawal of therapy. Heart Rhythm 2010; 7(7): 1008–1026. 30. Kelley AS, Mehta SS and Reid MC. Management of patients with ICDs at the end of life (EOL): a qualitative study. Am J Hosp Palliat Care 2008; 25(6): 440–446. 31. Kelley AS, Reid MC, Miller DH, et al. Implantable cardioverter-defibrillator deactivation at the end of life: a physician survey. Am Heart J 2009; 157(4): 702–708.e1. 32. Goldstein NE, Mehta D, Teitelbaum E, et al. ‘It’s like crossing a bridge’ complexities preventing physicians from discussing deactivation of implantable defibrillators at the end of life. J Gen Intern Med 2008; 23(Suppl. 1): 2–6. 33. Goldstein NE, Mehta D, Siddiqui S, et al. ‘That’s like an act of suicide’ patients’ attitudes toward deactivation of implantable defibrillators. J Gen Inter Med 2008; 23(Suppl. 1): 7–12. 34. Kramer DB, Buxton AE and Zimetbaum PJ. Time for a change – a new approach to ICD replacement. N Engl J Med 2012; 366(4): 291–293. 35. Poole JE, Gleva MJ, Mela T, et al. Complication rates associated with pacemaker or implantable cardioverter-defibrillator generator replacements and upgrade procedures: results from the REPLACE registry. Circulation 2010; 122(16): 1553–1561. 36. Padeletti L, Arnar DO, Boncinelli L, et al. EHRA Expert Consensus Statement on the management of cardiovascular implantable electronic devices in patients nearing end of life or requesting withdrawal of therapy. Europace 2010; 12(10): 1480–1489. 37. Goldstein NE, Lampert R, Bradley E, et al. Management of implantable cardioverter defibrillators in end-of-life care. Ann Intern Med 2004; 141(11): 835–838. 38. Hauptman PJ, Swindle J, Hussain Z, et al. Physician attitudes toward end-stage heart failure: a national survey. Am J Med 2008; 121(2): 127–135. 39. Santangeli P, Di Biase L, Dello Russo A, et al. Meta-analysis: age and effectiveness of prophylactic implantable cardioverter-defibrillators. Ann Intern Med 2010; 153(9): 592–599. 40. Ertel D, Phatak K, Makati K, et al. Predictors of early mortality in patients age 80 and older receiving implantable defibrillators. Pacing Clin Electrophysiol 2010; 33(8): 981–987. 41. Rich MW. Device therapy in the elderly heart failure patient: what is the evidence? Expert Rev Cardiovasc Ther 2010; 8(9): 1203–1205. 10
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42. Markowitz SM. Defibrillator implantation in the elderly: patients are older, but are physicians wiser? J Cardiovasc Electrophysiol 2010; 21(3): 242–244. 43. Grimm W, Stula A, Sharkova J, et al. Outcomes of elderly recipients of implantable cardioverter defibrillators. Pacing Clin Electrophysiol 2007; 30(Suppl. 1): S134–S138. 44. Callahan D. Taming the beloved beast: how medical technology costs are destroying our health care system. Princeton, NJ: Princeton University Press, 2009. 45. Eriksson K and Martinsen K. The hidden and forgotten evidence. Scand J Caring Sci 2012; 26(4): 625–626. 46. Kay GN and Bittner GT. Should implantable cardioverter-defibrillators and permanent pacemakers in patients with terminal illness be deactivated? Deactivating implantable cardioverter-defibrillators and permanent pacemakers in patients with terminal illness. An ethical distinction. Circ Arrhythm Electrophysiol 2009; 2(3): 336–339; discussion 339. 47. Kramer DB, Ottenberg AL, Gerhardson S, et al. ‘Just Because We Can Doesn’t Mean We Should’: views of nurses on deactivation of pacemakers and implantable cardioverter-defibrillators. J Interv Card Electrophysiol 2011; 32(3): 243–252. 48. Waterworth S and Gott M. Decision making among older people with advanced heart failure as they transition to dependency and death. Curr Opin Support Palliat Care 2010; 4(4): 238–242. 49. Marinskis G and Van Erven L. Deactivation of implanted cardioverter-defibrillators at the end of life: results of the EHRA survey. Europace 2010; 12(8): 1176–1177. 50. Sherazi S, Daubert JP, Block RC, et al. Physicians’ preferences and attitudes about end-of-life care in patients with an implantable cardioverter-defibrillator. Mayo Clin Proc 2008; 83(10): 1139–1141. 51. Strachan PH, Carroll SL, De Laat S, et al. Patients’ perspectives on end-of-life issues and implantable cardioverter defibrillators. J Palliat Care 2011; 27(1): 6–11. 52. Svanholm J. Sygeplejefaglig metode. en videnssociologisk analyse pa˚ grundlag af en empirisk undersøgelse af sygeplejerskers hverdagsliv [Nursing Method. Sociology of knowledge – an analysis based on an empirical investigation of nurses’ everyday lives]. PhD Thesis, Aalborg Universitet, Aalborg, 2008, 397 pp. 53. Løgstrup K. The ethical demand. Translated ed. Notre Dame, IN: University of Notre Dame Press, 1997. 54. Walter T. The revival of death. London: Routledge, 1994. 55. Davies E and Higginson IJ. The solid facts: palliative care. Copenhagen: WHO, Regional Office for Europe, 2009. 56. Economist Intelligence Unit. The quality of death: ranking end-of-life care across the world, http://www.eiu.com/ site_info.asp?info_name¼qualityofdeath_lienfoundation (2010, accessed 8 August 2012).
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Normativity under change: Older persons with implantable cardioverter defibrillator
Nursing Ethics 1–11 ª The Author(s) 2015 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014564906 nej.sagepub.com
Jette Rolf Svanholm, Jens Cosedis Nielsen, Peter Thomas Mortensen, Charlotte Fuglesang Christensen and Regner Birkelund Aarhus University Hospital, Denmark
Abstract Background: In modern society, death has become ‘forbidden’ fed by the medical technology to conquer death. The technological paradigm is challenged by a social-liberal political ideology in postmodern Western societies. The question raised in this study was as follows: Which arguments, attitudes, values and paradoxes between modern and postmodern tendencies concerning treatment and care of older persons with an implantable cardioverter defibrillator appear in the literature? Aims: The aim of this study was to describe and interpret how the field of tension concerning older persons with an implantable cardioverter defibrillator – especially end-of-life issues – has been expressed in the literature throughout the last decade. Methods: Paul Ricoeur’s reflexive interpretive approach was used to extract the meaningful content of the literature involving qualitative, quantitative and normative literature. Analysis and interpretation involved naive reading, structural analysis and critical interpretation. Ethical considerations: The investigation complied with the principles outlined in the Declaration of Helsinki. Findings and discussions: The unifying theme was ‘Normativity under change’. The sub-themes were ‘Death has become legitimate’, ‘The technological imperative is challenged’ and ‘Patients and healthcare professionals need to talk about end-of-life issues’. There seems to be a considerable distance between the normative approach of how practice ought to be and findings in empirical studies. Conclusion: Modern as well as postmodern attitudes and perceptions illustrate contradictory tendencies regarding deactivation of the implantable cardioverter defibrillator and replacement of the implantable cardioverter defibrillator in older persons nearing the end of life. The tendencies challenge each other in a struggle to gain position. On the other hand, they can also complement each other because professionalism and health professional expertise cannot stand alone when the patient’s life is at stake but must be unfolded in an alliance with the patient who needs to be understood and accepted in his vulnerability. Keywords Dilemmas, older people, end of life, ethics, implantable cardioverter defibrillator, sociology
Corresponding author: Jette Rolf Svanholm, Aarhus University Hospital, Brendstrupgaardsvej 100, Aarhus N., 8200 Denmark. Email: [email protected]
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Introduction To be a human being means to be subject to dualism including coming into existence by interacting with others and through one’s own self-actualization.1 This condition is a challenge for older patients with an implantable cardioverter defibrillator (ICD), as the development of society expects that patients are increasingly aware of own preferences and have knowledge of own wishes – also concerning end-of-life decisions.2 This challenges healthcare professionals because they have to consider the ethical and legal obligation of involving the patient in their professional assessment, which covers many other aspects.3 An ICD is used in primary or secondary prophylaxis of ventricular arrhythmia. The ICD can prevent the patient from dying as a consequence of the arrhythmia by inducing a shock to normalize the heart rhythm; thus, the ICD can have a life-saving function.4 However, in older people, it is likely that symptoms of heart failure or co-morbidities progress5,6 possibly impacting negatively on their quality of life.7 Changes in the perception of death have been an ongoing sociological and historical issue since the early 1970s.8,9 According to Philippe Arie´s,8–10 a French expert in history of death, perception of death in the Western societies has changed from a holistic and religious understanding to a more specialized and technical–scientifical understanding. Human mortality is a fact of life – but the circumstances and the time for every single person’s death can be manipulated medically, socially and psychologically.11 Death in modern society is understood as the definitive end, as the last step in a process that takes place in the ageing body. It has become individualized, a taboo; it is being repressed and connected to fear and thereby ‘forbidden’.8,10 Using ICDs with a lifeprolonging perspective, there is a risk that healthcare professionals focus too much on the technical aspects of being an ICD patient at the expense of the patient as a person.12 In other words, there is too little focus on including the patient’s perspective on his or her own situation in decision-making related to being an ICD patient. Patient-centered treatment and care require dialogue between patient and healthcare professionals about treatment options and about the consequences of these choices. In this connection, it would be relevant if the dialogue also included the supportive and palliative precautions which can be offered as an alternative to ICD treatment. The technological paradigm is challenged by the social-liberal political ideology in postmodern Western societies where each individual has become responsible for decisions related to his own life.10 Opposite to the modern understanding of death where there is a tendency that medicine has the monopoly on death, the postmodern understanding of death gives a person’s self the authority to make ‘right decisions’.13,14 Individuals at 80 years of age and older is the fastest growing group in the Western countries. Heart disease is especially prominent in this population with a prevalence of 2%–3% in individuals at 65 years of age increasing to 80% for patients above 80 years of age.15 According to The United States National Registry, there were 339,076 ICDs implanted from 2006 to 2008 with increasing device implants year on year.16 The number of ICDs implanted internationally varies, with Europe having approximately one quarter of that in the United States. The annual incidence of appropriate ICD candidates in Europe is calculated to be somewhere in the range 750–1000 per million population.17 More than 20% of ICD devices are implanted in the older people 80 years of age.5,18 There is a growing prescription of ICDs in the older people with 42% of these patients being above 70 years and 12.4% being older than 80 years.19 The first ICD was implanted in a human being in 1980 in Baltimore, USA.20 Modern and postmodern tendencies in society increase the field of tension between dependency related to technical expertise of healthcare professionals and the independence related to self-actualization.14 When an older person with an ICD is expected to account for preferences and wishes in connection with his ICD treatment, it must be understood in light of the modern society’s focusing on treatment and repression of death. It must also be understood in light of the postmodern society’s focusing on the individual’s right and obligation to choose what is best for him or her concerning life and death. According to Kari Martinsen,21 2
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ethical dilemmas occur when technical–scientifical knowledge is used by healthcare professionals labelling the patient, and decisions are made strictly on this basis and the opposite when the obligation to decide is totally devolved to the patient. In this field of tension, the question raised in this study was as follows: Which arguments, attitudes, values and paradoxes between modern and postmodern tendencies concerning treatment and care of older persons with an ICD appear in the literature?
Aim The aim of this study was to describe and interpret how the field of tension concerning older persons with an ICD – especially end-of-life issues – has been expressed in the literature throughout the last decade.
Study design and methods In our interpretation, we are inspired by Paul Ricoeur’s reflexive interpretive approach.22–25 The interpretive approach was used to extract the meaningful content of the literature, understood in a broad way involving qualitative, quantitative and normative literature (including editorial comments and expert consensus statements). It is the understanding of the text of the author of each source; his or her aim, attitudes and values in relation to older people with an ICD and his or her argumentation and message with the article that will constitute the data sample to be analysed and interpreted. According to Ricoeur and colleagues,22,23 inclusion of sources in this study depends on the degree to which the single source is relevant and meaningful in relation to the aim of the study. Therefore, the sources from the literature search which were not significantly relevant in relation to the aim of the study were excluded. We searched the databases PubMed, PsykInfo and CINAHL. The following are the limitations: (a) Language – English, Danish, Swedish, Norwegian; (b) age – 80 years and over (80þ years) and (c) publication date – from 01 January 2006 to 31 December 2012. Several search strings were made using the following keywords: ‘defibrillator, implantable’ or ‘implantable cardioverter defibrillator’ combined with (a) ‘health care professionals’ or ‘health personnel’ or ‘nursing’; (b) ‘ethics’ or ‘communication’ or ‘interpersonal communication’ or ‘interpersonal relation’ and (c) ‘terminal care’ or ‘end-of-life’ or ‘palliative care’. Titles or titles and abstracts were read by the first author (J.R.S.). A total of 49 sources were screened for relevance. When they concerned older persons with an ICD combined with attitudes, values and paradoxes regarding end-of-life or ethical issues, they were discussed with R.B. to ensure consensus about inclusion. A total of 27 sources were included. The investigation complied with the principles outlined in the Declaration of Helsinki.26 The study was approved by the Danish Data Protection Agency as part of a larger research study.
Analysis and interpretation The results of this study are based on a three-stage process of analysis and interpretation inspired by the hermeneutical–phenomenological theory of interpretation by the French philosopher Paul Ricoeur22,24 involving naive reading, structural analysis, critical interpretation and discussion.22,23,25 The naive reading contributed to an initial understanding of each source and a holistic understanding of what the source was about. Each source was read and reread, and immediate impressions were noted and discussed by the first author (J.R.S.) and fifth author (R.B.). The reading provided an overview and opened up areas meaningful to the aim of our study. Subsequently, the naive reading involved comparing the sources creating an impression of the sources as a whole. 3
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Structural analysis means that the text is structured into meaningful and significant units.22,23,25 The extracted meaning units are illustrated by quotes of ‘what the text says’ and afterwards the text is moved to an understanding of ‘what the text speaks about’ according to Ricoeur’s22 theory of interpretation: ‘to understand a text is to follow its movement from meaning to reference: from what the text says to what it speaks about’. The main idea in Ricoeur’s22 phenomenological hermeneutic interpretation of texts is to open up a new world in front of the text, which means to come to an understanding of a text. The meaning units in the structural analysis were grouped into themes. The unifying theme was ‘normativity under change’. A further division led to the sub-themes ‘Death has become legitimate’, ‘The technological imperative is challenged’ and ‘Patients and healthcare professionals need to talk about end-of-life issues’. The next step in the interpretation process, the critical interpretation, makes a comprehensive and understandable interpretation of the unifying theme and sub-themes. The themes are finally discussed in relation to the pre-understanding of Western societies focusing on modern and postmodern tendencies concerning treatment and care of older persons with an ICD.
Findings Normativity under change The unifying theme ‘Normativity under change’ means that the current practice regarding treatment and care for older persons above 80 years of age with an ICD is challenged by healthcare professionals, clinicians as well as researchers, arguing for a more natural relationship to death for both patients and healthcare professionals. A sharp criticism is raised towards healthcare professionals unable to enter into a dialogue with ICD patients and relatives to talk about issues concerning death and end of life. It is also argued that clinical trials of persons above 80 years of age with an ICD ought to be promoted to strengthen the understanding of the advantages and the disadvantages of ICD treatment. It is anticipated that decision-making will be more clear, differentiated and many-faceted also by including ethical and economical considerations.
Death has become legitimate In recent years, ‘quality of death’ in relation to persons with an ICD27 has been on the healthcare agenda, and an increasing number of scientific articles have been critical to existing practices concerning older people with an ICD and end-of-life issues. There seems to be an indirect or direct argumentation to legitimize death in ICD patients in relation to the following: Deactivation of the shock function.13,28–33 Questioning replacement of the ICD.19,34,35 Deactivation of the shock function. At the end of life, an ICD can cause discomfort as ICD shocks can cause pain and anxiety and may not prolong life with an acceptable quality. It is appropriate to consider ICD deactivation as a patient’s clinical status deteriorates and death is near. A review28 demonstrates (a) that deactivation is widely debated and (b) that a changed normativity due to deactivation of the ICD is currently implied in scientifically based recommendations. According to the Heart Rhythm Society (HRS)/European Heart Rhythm Association (EHRA) consensus statement on management of cardiovascular implantable electronic devices, ‘the primary aim with deactivation is to respect the patient’s right to live, or at least to die with dignity, while limiting any therapeutic action that increases the patient’s level of stress, pain or anxiety’.36 Protection of the values ‘respect’ and ‘dignity’ in relation to the patient is the ethical argument 4
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verbalized to legitimize death as an option by deactivating the ICD in patients nearing end of life to improve the patient’s dying process. In an article by Snipes et al.,13 the message was addressed directly to patients and their relatives concerning the question ‘How do I handle death and dying issues with my implantable cardioverter defibrillator (ICD) and cardiac pacemaker?’ The purpose of raising the question was to make it legitimate to patients at the end of life to deny the risk of painful shocks and to seek a more peaceful death. The article answers potential questions for patients about end of life with an ICD. It is an example of how to communicate with patients and their relatives about this sensitive issue at the same time embedding the message to patients and their relatives as well as healthcare professionals that a peaceful death is possible by getting the ICD deactivated.13 A strong signal about involving patients in decision-making regarding their ICD treatment, also to stop treatment and to allow for both a healthcare professional and for the patient and his or her relatives to talk about death and have wishes and preferences for the end-of-life process is legitimizing death as an option. Questioning replacement of the ICD. A study reported ‘ . . . that little consideration has been paid to what happens in the years after implantation when ICD batteries require replacement, device leads become defective, or systems become infected’. The question is raised as follows: ‘Should all these patients receive a replacement?’34 It was argued (a) that patients and their families should be made aware that device replacement is not obligatory and (b) that from both a patient and a societal perspective, the expense and uncertainty of ICD therapy call for a more patient-centered approach which will inevitably reduce costs even though it promotes individualization of a highly personal process.34 The cost-saving arguments are also used by Wright et al.,19 underlining the issue to replace a generator approaching ‘end of life’ at a time when little expected improvement in quality and lifespan for the patient is to be balanced against the costs and complications of replacement. Contrary to the normative legitimizing of death, empirical studies, however, show a reality where deactivation of the ICD and an opening towards death as an option are not natural issues for neither patients nor healthcare professionals. Many patients do not wish to get their ICD deactivated although they are close to the end of life or they do not wish to make a decision.33,37 Moreover, healthcare professionals find it difficult to bring up the topic of deactivation and talk openly with patients about death.19,38 There is a contradiction between theory, including ethical guidelines and moral algorithms, and practice, that is, between the tendency towards changed normative perspectives in the literature and the empirical reality unfolded in clinical practice. The repression of death in modern society still dominates the empirical reality. Medicine has the monopoly on death with an almost blind belief that at the end, development of medical science and technology can control or at least postpone death.9 The normative change is verbalized by another set of values where the individual patient is informed about treatment, including ‘non-treatment’ and thus to see death as an option.
The technological imperative is challenged ‘The technological imperative’ refers to the way decisions about appropriate therapy are driven by the availability and value provided by the newest and most advanced technological solutions.5 While ICD prevents sudden death from a potentially fatal arrhythmia, it contributes to prolong dying for patients with progressive symptomatic heart failure. In this way, ICD treatment is ironically a technology of life extension AND dying.5,6 With reference to the ‘technological imperative’, Kaufman et al.5 explored the paradox among the oldest age group focusing on the doctor–patient dialogue and patient and family deliberations about use of ICD. By using a structural–cultural framework, the study showed that the technological option of an ICD 5
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becomes an ethical obligation for physicians to treat and for patients to accept treatment, also when it concerns patients above 80 years of age.5 It was concluded that . . . clinicians are aware that treatment of the very old can be a double-edged endeavor yet they want and feel obliged to provide life-extending options, focusing on the risk of sudden death, sometimes regardless of patient’s age or extreme frailty. Some older persons with deteriorating health are ambivalent about going on living and do not easily authorize their own death by proactively stopping or rejecting a (potentially) life-saving therapy; this is what saying ‘no’ to technology has come to imply.5
Today, the technological imperative in medicine is bolstered by the value assigned to evidence-based studies, primarily clinical trials. Technical ability to reduce mortality becomes ‘best treatment’ and it outranks implications for quality of life.6 Evidence contributes to standard care through two cultural moves: from new technique to standard treatment and from standard treatment to ethical necessity.5 However, the evidence used to strengthen the technological imperative in older people with an ICD is weak. Only few cardiac device trials include patients 80 years with an ICD. It is still unknown whether prophylactic ICD therapy benefits older patients with severely impaired left ventricular function and a higher risk of dying of other causes than sudden death. Heart failure primarily affects older adults, and these patients are underrepresented in clinical trials. Clinical trials including persons older than 80 years with an ICD are thus warranted.15,18,39–43 The ethics of ICD deactivation has not been explored specifically for persons above 80 years of age although this patient population accounts for 20% of patients with implantable cardiac devices.5,18 The other part of the ironic technological imperative, the prolonged dying, suggests a patient-centered control of the dying process and a rejection of interventions to prolong the dying transition and cause pain and suffering at the end of life.5 According to Callahan,44 societal awareness of the overuse of technologies has most recently focused both on the problem of the prolongation of suffering and on the unsustainable increasing healthcare costs. The technological imperative is linked to the modern society dominated by a medical understanding of evidence,45 where the tendency is that death is repressed and the approach to patients is focused on technology at the expense of the patient as a person.12 The technological imperative comprises a need to treat which has become a part of the patient’s preferences governing the actions of healthcare professionals. The challenge of the technological imperative apparently includes a broader understanding of evidence verbalizing the ethical aspects in relation to treatment options and the patient’s suffering which become pivotal in the argumentation also involving cost analyses. ICD use as a technological imperative and the interpretation of it as ironic show the strong contradiction between the existing values in society. Modern tendencies are implied in seeking true knowledge through clinical trials about persons above 80 years of age with an ICD not only to justify use of ICD in the older people but also to create generalized knowledge about treatment to strengthen clinical decision-making. Postmodern tendencies are implied in the critical approach to ICD treatment as a technological imperative in the very older people because it complicates the experience of living, management of heart failure, endof-life care and the dying process, and thereby acknowledge death and dying processes as a natural part of life in the very older people.
Patients and healthcare professionals need to talk about end-of-life issues In the literature, informed consent is verbalized as the most important aspect in the relation between physician and patient. Physicians are ethically and legally obliged to ensure that patients are informed and involved in decision-making regarding diagnosis and treatment.29,46 According to Lampert et al., ‘informed 6
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consent’ derives from the ethical principle of respect for persons. Autonomy is maximized when patients understand the nature of their diagnosis and treatment options and participate in decisions about their care. Concerning both deactivation of the shock function29,47 and ICD replacement,19,34 ‘advance care planning’ is mentioned as an important tool that ought to be considered in decision-making. Advance care planning is understood as a process promoting patient autonomy. The patient identifies own values, preferences and goals regarding future healthcare. The planning should include a discussion of these values and preferences with healthcare professionals, documentation in the patient’s medical record.29,47 In this way, the patient is expected to be an important actor in the decision-making process. The advance care planning tool assumes that the patient is conscious of own values and preferences and is able to play an active role and make treatment-related decisions; evidence of this in clinical practice is, however, very limited.48 Empirical studies show that many older people and terminally ill patients with an ICD are not aware of the possibility of ICD deactivation and have never or not sufficiently talked with a physician about this.31,33,37,47,49 According to Goldstein et al.,37 this was the case even in the patients perceived to be near death or who had previously expressed a desire to limit life-prolonging therapy. Frequently, an ICD is implanted in older persons as a multifunctional device and often there is no plan for ‘end-of-life care’ and deactivation at the end of life.5 The patient perspective has been investigated by Goldstein et al.33 All patients believed that the device was exclusively beneficial and one patient described deactivation ‘as an act of suicide’. The reasons for not talking about deactivation vary. With increased knowledge about the management of withdrawal of potentially life-prolonging therapy, physicians are likely to become more skilled at caring for dying patients with an ICD. Moreover, the physicians refer to limited relations with the patient and to the technical nature of the ICD.31,32,50 Many patients do not want deactivation or at least they rely on the physicians’ decision-making. What they want is knowledge on how to prevent shocks and how to prevent sudden death.33,51 The conflicting relation between the intentional expressions based on legislation and ethical principles and the factual circumstances regarding the relation between healthcare professionals and patients indicate a paradox. The relation between the physician and the older patient is characterized by authority with the physician as the expert and the patient as depending on the advice of the physician making it difficult for the patient as well as the physician to change behaviour. When physicians have not developed skills to communicate with dying persons, when they consider ICD treatment only as a technical matter and do not have a relation to the patient, it will maintain an understanding of death as a taboo in a healthcare setting – keeping the technological imperative alive.
Discussion and conclusion Modern as well as postmodern attitudes and perceptions have been uncovered in the analysis. As contradictory tendencies, they challenge each other in a struggle to gain a position.52 On the other hand, they can also complement each other because professionalism and health professional expertise cannot stand alone when the patient’s life is at stake but must be unfolded in an alliance with the patient who needs to be understood and accepted in his vulnerability.53 The older persons with an ICD are dependent on the meeting with the health professionals and the healthcare system to be able to find their own feet in the last phase of life. To prevent ethical dilemmas, the older people nearing the end of life depend on information about generalized knowledge on pros and cons regarding treatment with an ICD also considering any co-morbidities. They must know the risk of inappropriate shocks preventing the dying older people in having a natural death. They depend on the courage and the ability of healthcare professionals to talk about death as a sensitive issue and they depend on being understood with their references and fundamental values. Healthcare 7
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professionals need to be able not to label the patient but understand the patient and his or her concrete situation. By combining this knowledge together with scientific evidence, it is possible to support and facilitate a shared decision about ICD treatment, which is best for the patient. A changing normativity in this analysis demonstrates that the taboo and repression of death in modern societies8–10 is changing in two ways: (a) attention to using ICD as a medical technology may be an obstacle for death as a natural option and (b) every single person with an ICD nearing the end of life is obliged to make decisions about his own life and death; the authentic, emotional and personal issues are in focus as pointed out by Walter54 in his book The revival of death. In this way, postmodern characteristics are clearly verbalized in the normative literature and oppose the project of control of modern society radically. As shown in the analysis of empirical studies, older people rely on their physician to make decisions about their treatment. In this way, it is likely that existing roles between the doctor and patient are maintained. This indicates that the physician is perceived as the expert by the patient even when the physician is not focusing on the ethical perspectives of the power he displays. A review about decision-making among older people with advanced heart failure found that the concerns of the older people were more about the manner of dying and symptom control than the timing or place of death.48 If the older people opt out of ICD treatment, how will this affect his options for relief, help and support at the end of life and for palliative care? Palliative care is one of the most important but neglected public health issues of our time.55 In 2010, the Economist Intelligent Unit (EIU) made a report concerning ‘quality of death’ ranking end-of-life care across the world. It is stated that even where end-of-life issues can be openly discussed, the obligations implied by the Hippocratic Oath do not fit easily with and is crucial to the demands of end-of-life palliative care, supporting modern characteristics.56 Death has become medicalized and curative procedures are often prioritized ahead of palliative care. According to EIU, it is noticed that many developed countries lag behind: these include Denmark, Italy, Finland and South Korea. In these countries, the quality and availability of palliative care are often poor and policy co-ordination is lacking.56 Despite this, many of these countries have an increasing longevity and an ageing population and thus an increased demand for endof-life care. It is also pointed out that global education and training in palliative care is rare in healthcare education curricula.56 The structures in society do not establish a safety net for the older persons nearing the end of life who have rejected the possibility of life-prolonging treatment with an ICD. Even though it is attempted to make the concept of death a more natural part of human life, the political structures in the Western world concerning healthcare and welfare for dying persons do not consequently support that tendency. Future research should focus on the importance and consequences of existing treatment ideologies for older patients with an ICD and their relatives concerning end-of-life issues. By focusing the construction of roles and collaboration between patient and healthcare professionals regarding death and end-of-life issues, new human professional approaches and tools are to be developed and tested to prevent ethical dilemmas and to support shared decision-making. Finally, palliative interventions and approaches to patients with or without the shock function of an ICD are to be developed and tested. With this literature study which methodologically is inspired by Ricoeur’s theory of interpretation, it has not been the purpose to create an objective and definitive truth. According to Ricoeur, it is not possible in the science of interpretation. On the contrary, it has been the purpose to understand and interpret some central aspects of the way patients with an ICD are perceived and described in the literature throughout the last decade. Conflict of interest The authors declare no conflicts of interest. 8
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