Ethical issues in end-of-life care





Learning Objectives


Upon the completion of this chapter and with further self-directed learning you are expected to be able to:




  • Discuss critically ‘Not For Treatment (NFT)’ directives and ‘Not For Resuscitation (NFR)’ directives.



  • Discuss critically the moral criteria that might be used to justify an NFT or NFR directive.



  • Examine critically the ethical dimensions of NFT and NFR directives.



  • Discuss critically ways in which NFT and NFR policies and procedures could be improved.



  • Discuss the notion of ‘medical futility’ and its implications for the profession and practice of nursing.



  • Explain why medical futility has been controversially abandoned as an explicit decisional criterion in end-of-life decision-making.



  • Examine critically the criterion ‘quality of life’ and its relevance to end-of-life decision-making.



  • Discuss critically three senses in which the notion of quality of life might be used.



  • Explore the possible risks to patients of making faulty quality-of-life judgments.



  • Define ‘advance directives’ and ‘advance care planning’.



  • Discuss critically how advance directives work.



  • Differentiate between advance directives, advance care planning and respecting patient choices (RPC).



  • Examine critically the risks and benefits of advance directives and advance care planning.



  • Explore how nurses can make a significant contribution to care and treatment decisions at the end stage of life.





Introduction


At the end stages of life there invariably comes a point at which decisions have to be made about whether to start, stop or withdraw life-sustaining treatment. The life-sustaining treatment in this instance can include the use of invasive (‘aggressive’) treatments (such as mechanical ventilation / life-support machines, surgery, emergency cardiopulmonary resuscitation, haemodialysis and chemotherapy), or the use of less-invasive (‘less-aggressive’) treatments (such as the administration of antibiotics, cardiac arrhythmic drugs, blood transfusions, and intravenous and / or nasogastric hydration). Whether involving invasive or non-invasive treatments, decisions have to be made either way (i.e. to treat or not to treat) even when it is ‘obvious’ (or at least highly probable) that their administration will not result in improved clinical outcomes for the patient – for example, the patient will continue to experience ‘grievous bodily deterioration’ and / or will ultimately die, regardless of the treatment given ( Cantor 2004 : 1400). The question remains, however, of who should decide these things, and on what basis?


The questions of who ultimately should decide whether to provide, withhold or withdraw life-sustaining treatments at the end stage of life, as well as when, where and how best to decide, are all matters of moral controversy. In clinical contexts, controversies surrounding these issues can also give rise to serious conflict and moral quandary among those involved – that is, health care providers, patients, their families, and / or persons legally authorised to make decisions on behalf of the patient. Conflict, in this instance, can take the form of health care providers being asked to ‘do everything’ when they believe that a withdrawal of treatment is more appropriate, or their being asked to ‘do nothing’ (or, at least, to withdraw treatment) when they believe that it should be continued. When unable to agree to either request, this situation can pose a morally challenging and at times emotionally burdensome situation for decision-makers – and one that is not easily resolved. The dilemmas and associated discomfort among decision-makers in these instances can be compounded when there is also disagreement among clinicians about: the nature and stage of a patient’s illness, how responsive a patient’s illness might be to treatment, and whether proposed therapeutic measures are worth it if ‘the gain in weeks or months that might reasonably be expected’ by a given therapeutic intervention is significantly outweighed by the loss of quality of life due to the toxic side effects of the treatment.( Ashby & Stoffell 1991 : 1322).


Protracted disputes about end-of-life care are rare, with most being resolved through the use of effective conflict resolution strategies ( Willmott et al 2014 ). Intractable disputes, however, are more challenging and may require tribunal or judicial intervention ( MacCormick et al 2018 ; Willmott et al 2014 ). Commentators contend that tribunals and courts (especially the Supreme Court) have an important role to play in resolving end-of-life care disputes, not least because they provide definitive guidance to clinicians in their decision-making ( Close et al 2018 ; MacCormick et al 2018 ; Willmott et al 2014 ).


At the forefront of the moral controversies and dilemmas about end-of-life decision-making are the issues of Not For Treatment (NFT) directives , Not For Resuscitation (NFR) directives (also sometimes called Do Not Resuscitate (DNR) directives), withholding or withdrawing the administration of artificial nutrition and hydration (ANH) (to be discussed in Chapter 10 ) and the criteria or bases used for justifying these directives (e.g. ‘medical futility’, quality-of-life considerations, and advance directives / advance care planning / respecting patient choices programs). The practical and moral significance of these issues for attending health care providers (particularly those caring for an ageing population) has been underscored by an international study (a world first) comparing the percentage of deaths occurring in hospital and residential aged care facilities in 45 populations ( Broad et al 2013 ). The study found that, with the notable exception of China, Taiwan, Chile and three Eastern European countries (Albania, Lithuania and Serbia), the majority of the deaths reported occurred in hospitals and residential care facilities ( Broad et al 2013 : 261). As these settings are places where high levels of end-of-life care are provided, there is room to speculate that the vast majority of deaths probably occurred after a decision was made to forgo life-sustaining therapy (e.g. cardiopulmonary resuscitation). One team of researchers has suggested that a significant majority, >75% of people, who die in hospital do so with a NFR / DNR order in place ( Mockford et al 2015 ).


These issues are of demonstrable significance for the nursing profession. Nurses are often at the forefront of requests either for life support to be withheld or withdrawn or, alternatively, ‘for everything possible to be done’. The ‘rightness’ or ‘wrongness’ of such requests, however, are not always clear-cut and, in contexts where different values, attitudes and beliefs prevail, deciding these things can be extremely challenging. Since these issues have significant moral implications for the profession and practice of nursing, some discussion of them here is warranted.




Not For Treatment (NFT) directives


Sometimes, during the course of end-of-life care, an explicit medical directive might be given to the effect that a patient is Not For Treatment (NFT). Sometimes the patient or his or her proxy will agree with (and may even have requested) the NFT decision that has been made; sometimes they will not. It is when there is disagreement about a treatment choice – that is, where a decision is ‘contested’ – that the matter becomes problematic. Here an important question arises, namely: ‘When is it acceptable, if ever, to provide, withdraw or withhold life-sustaining medical treatment of a patient during their illness trajectory?’


The problem of treatment in ‘medically hopeless’ cases


In the past, decisions about what treatments to provide – when, where and by whom – were made autonomously (some would say paternalistically) by attending doctors. This sometimes led to a situation in which people were being ‘aggressively’ treated even when their cases were deemed ‘medically hopeless’. In other words, people were treated ‘aggressively’ even where it was evident to experienced bystanders that such treatment would not make a significant difference to their health outcomes or life expectancy. Sometimes treatment of this nature was imposed without the patient’s knowledge or consent (e.g. those in a so-called ‘persistent vegetative state’), and gave rise to varying degrees of suffering by both patients and their families / friends.


This situation began to change, however, as the public started to become wary of and started to question the wisdom of people being ‘hopelessly resuscitated’. This public questioning saw a number of key cases reaching the public’s attention. Rosemary Tong (1995 : 166) explains:



As a result of various factors, the withholding and withdrawing cases that captured the imagination of the public in the 1960s and 1970s were ones in which patients or their surrogates resisted the imposition of unwanted medical treatment. The media portrayed dying patients as routinely falling prey to physicians who, out of fear of subsequent litigation … or out of obedience to some sort of ‘technological imperative’ … insisted on keeping them ‘alive’ irrespective of the quality of their existence.


Tong (1995) suggests that during the 1960s and 1970s, economic resources permitted everything possible to be done. During the 1980s and 1990s, however, it became increasingly evident that neither individuals nor society as a whole could sustain the ‘technological imperative’ to treat regardless of the outcomes. Thus communities in the Western world entered into a new era that was characteristically ‘burdened with new obligations of social justice’ in health care ( Tong 1995 : 167). Whereas end-of-life issues in the 1960s and 1970s were more concerned with patient autonomy versus medical paternalism , in the 1980s and 1990s they had become chiefly concerned with patient autonomy versus distributive justice ( Tong 1995 : 166–7), a concern that persists to the present time. Over the intervening decades, however, two key questions have come to dominate bioethical thought, namely: ‘Are people faced with severe illnesses and approaching the ends of their lives (or their proxies) morally entitled to request “medically inappropriate”, “non-beneficial” and “expensive” (futile) medical treatment?’ and ‘Is it right to refuse such requests?’, or, as Quill et al (2009) ask, ‘when patients or their proxies ask for “everything possible to be done”, should clinicians ignore the face value of such requests and instead use the request merely as a basis for a “broader discussion” on what the patient “really wants” and what “doing everything” really means to the patient?’ At stake in answering these questions are not just the entitlements of dying individuals but also, as Tong (1995 : 167) concludes:



the future wellbeing of the health care professional–patient–society relationship – a relationship best understood not in terms of competing rights (though that is an aspect of it), but in terms of intersecting responsibilities.


Disputes about futile or useful treatments at the end stages of life invariably represent ‘disputes about professional, patient and surrogate autonomy, as well as concerns about good communication, informed consent, resource allocation, under-treatment, over-treatment, and paternalism’ ( Kopelman 1995 : 109). They also represent dispute about ‘how to understand or rank such important values as sustaining a life, providing appropriate treatments, relieving suffering, or being compassionate’ and the bearing these values may have on deciding questions of resource allocation ( Kopelman 1995 : 111).


Who decides?


The question of who and how to decide end-of-life treatment options is a difficult one to answer. Choices include:




  • the medical practitioner (unilateral approach)



  • the health care team (consensus approach)



  • the patient or his / her surrogate (unilateral approach)



  • the health care provider and patient / nominated support person (consensus approach)



  • society (consensus approach).



While all plausible, none of the above approaches is without difficulties (even in the case of a consensus being reached, this alone is not enough to confer moral authority on the decisions made). For example, although all may entail respect for the autonomy of individuals, they nevertheless risk decisions being made that are arbitrary, biased, capricious, self-interested and based on personal preferences. This is unacceptable (especially in contested cases) since, as Kopelman points out (1995 : 117–19):



If one ought to do the morally defensible action in the contested case, then the final appeal cannot be solely preferences of someone or some group. Preference or agreements may be unworthy because they result from prejudice, self-interest or ignorance. In contrast, moral justification requires giving and defending reasons for preferences, and by doing so relying on methodological ideals of clarity, impartiality, consistency and consideration of all relevant information. Other important, albeit fallible, considerations in making moral decisions include legal, social, and religious traditions, stable views about how to understand and rank important values, and a willingness to be sensitive to the feelings, preferences, perceptions and rights of others. The evolution of contested cases often illustrates the pitfalls of failing to take the time and clarify people’s concerns, problems, feelings, beliefs or deeply felt needs or even to consider if people are treating others as they would wish to be treated … Over-treatments may be burdensome to patient and costly to society, yet under-treatments can compromise the rights or dignity of the people seeking help.


In the case of requests being made for ‘everything possible to be done’ some have suggested that there is no obligation (legally or morally) to comply with such requests in so-called medically hopeless (‘futile’) cases. In Australian and UK jurisdictions this stance has also been upheld by the courts, which, unlike US courts, have usually deferred to medical opinion on whether a contested treatment is ‘inappropriate’ or ‘futile’ ( Close et al 2018 ; Paris et al 2017 ; Willmott et al 2014 ). Jecker and Schneiderman (1995 : 160) clarify, however, that ‘saying “no” to futile treatment should not mean saying “no” to caring for the patient’. They conclude:



[saying ‘no’] should be an occasion for transferring aggressive efforts away from life prolongation toward life enhancement. Ideally, ‘doing everything’ means optimising the potential for a good life, and providing that most important coda to a good life – a ‘good death’. ( Jecker & Schneiderman 1995 : 160)


Decisions about whether or not to initiate or to withhold and / or remove medical treatment on patients deemed ‘medically hopeless’ will rarely be without controversy (sometimes referred to in the bioethics literature as the ‘not starting versus stopping’ debate (see, for example, Gert et al 1997 : 282–3)). Nurses are not immune from the controversies surrounding these decisions, and may even find themselves unwitting participants in them. It is essential, therefore, that nurses are well appraised of the relevant views for and against decisions aimed at limiting or withdrawing the medical treatment of patients deemed (rightly or wrongly) to be ‘medically hopeless’.




The problem of treatment in ‘medically hopeless’ cases


In the past, decisions about what treatments to provide – when, where and by whom – were made autonomously (some would say paternalistically) by attending doctors. This sometimes led to a situation in which people were being ‘aggressively’ treated even when their cases were deemed ‘medically hopeless’. In other words, people were treated ‘aggressively’ even where it was evident to experienced bystanders that such treatment would not make a significant difference to their health outcomes or life expectancy. Sometimes treatment of this nature was imposed without the patient’s knowledge or consent (e.g. those in a so-called ‘persistent vegetative state’), and gave rise to varying degrees of suffering by both patients and their families / friends.


This situation began to change, however, as the public started to become wary of and started to question the wisdom of people being ‘hopelessly resuscitated’. This public questioning saw a number of key cases reaching the public’s attention. Rosemary Tong (1995 : 166) explains:



As a result of various factors, the withholding and withdrawing cases that captured the imagination of the public in the 1960s and 1970s were ones in which patients or their surrogates resisted the imposition of unwanted medical treatment. The media portrayed dying patients as routinely falling prey to physicians who, out of fear of subsequent litigation … or out of obedience to some sort of ‘technological imperative’ … insisted on keeping them ‘alive’ irrespective of the quality of their existence.


Tong (1995) suggests that during the 1960s and 1970s, economic resources permitted everything possible to be done. During the 1980s and 1990s, however, it became increasingly evident that neither individuals nor society as a whole could sustain the ‘technological imperative’ to treat regardless of the outcomes. Thus communities in the Western world entered into a new era that was characteristically ‘burdened with new obligations of social justice’ in health care ( Tong 1995 : 167). Whereas end-of-life issues in the 1960s and 1970s were more concerned with patient autonomy versus medical paternalism , in the 1980s and 1990s they had become chiefly concerned with patient autonomy versus distributive justice ( Tong 1995 : 166–7), a concern that persists to the present time. Over the intervening decades, however, two key questions have come to dominate bioethical thought, namely: ‘Are people faced with severe illnesses and approaching the ends of their lives (or their proxies) morally entitled to request “medically inappropriate”, “non-beneficial” and “expensive” (futile) medical treatment?’ and ‘Is it right to refuse such requests?’, or, as Quill et al (2009) ask, ‘when patients or their proxies ask for “everything possible to be done”, should clinicians ignore the face value of such requests and instead use the request merely as a basis for a “broader discussion” on what the patient “really wants” and what “doing everything” really means to the patient?’ At stake in answering these questions are not just the entitlements of dying individuals but also, as Tong (1995 : 167) concludes:



the future wellbeing of the health care professional–patient–society relationship – a relationship best understood not in terms of competing rights (though that is an aspect of it), but in terms of intersecting responsibilities.


Disputes about futile or useful treatments at the end stages of life invariably represent ‘disputes about professional, patient and surrogate autonomy, as well as concerns about good communication, informed consent, resource allocation, under-treatment, over-treatment, and paternalism’ ( Kopelman 1995 : 109). They also represent dispute about ‘how to understand or rank such important values as sustaining a life, providing appropriate treatments, relieving suffering, or being compassionate’ and the bearing these values may have on deciding questions of resource allocation ( Kopelman 1995 : 111).




Who decides?


The question of who and how to decide end-of-life treatment options is a difficult one to answer. Choices include:




  • the medical practitioner (unilateral approach)



  • the health care team (consensus approach)



  • the patient or his / her surrogate (unilateral approach)



  • the health care provider and patient / nominated support person (consensus approach)



  • society (consensus approach).



While all plausible, none of the above approaches is without difficulties (even in the case of a consensus being reached, this alone is not enough to confer moral authority on the decisions made). For example, although all may entail respect for the autonomy of individuals, they nevertheless risk decisions being made that are arbitrary, biased, capricious, self-interested and based on personal preferences. This is unacceptable (especially in contested cases) since, as Kopelman points out (1995 : 117–19):



If one ought to do the morally defensible action in the contested case, then the final appeal cannot be solely preferences of someone or some group. Preference or agreements may be unworthy because they result from prejudice, self-interest or ignorance. In contrast, moral justification requires giving and defending reasons for preferences, and by doing so relying on methodological ideals of clarity, impartiality, consistency and consideration of all relevant information. Other important, albeit fallible, considerations in making moral decisions include legal, social, and religious traditions, stable views about how to understand and rank important values, and a willingness to be sensitive to the feelings, preferences, perceptions and rights of others. The evolution of contested cases often illustrates the pitfalls of failing to take the time and clarify people’s concerns, problems, feelings, beliefs or deeply felt needs or even to consider if people are treating others as they would wish to be treated … Over-treatments may be burdensome to patient and costly to society, yet under-treatments can compromise the rights or dignity of the people seeking help.


In the case of requests being made for ‘everything possible to be done’ some have suggested that there is no obligation (legally or morally) to comply with such requests in so-called medically hopeless (‘futile’) cases. In Australian and UK jurisdictions this stance has also been upheld by the courts, which, unlike US courts, have usually deferred to medical opinion on whether a contested treatment is ‘inappropriate’ or ‘futile’ ( Close et al 2018 ; Paris et al 2017 ; Willmott et al 2014 ). Jecker and Schneiderman (1995 : 160) clarify, however, that ‘saying “no” to futile treatment should not mean saying “no” to caring for the patient’. They conclude:



[saying ‘no’] should be an occasion for transferring aggressive efforts away from life prolongation toward life enhancement. Ideally, ‘doing everything’ means optimising the potential for a good life, and providing that most important coda to a good life – a ‘good death’. ( Jecker & Schneiderman 1995 : 160)


Decisions about whether or not to initiate or to withhold and / or remove medical treatment on patients deemed ‘medically hopeless’ will rarely be without controversy (sometimes referred to in the bioethics literature as the ‘not starting versus stopping’ debate (see, for example, Gert et al 1997 : 282–3)). Nurses are not immune from the controversies surrounding these decisions, and may even find themselves unwitting participants in them. It is essential, therefore, that nurses are well appraised of the relevant views for and against decisions aimed at limiting or withdrawing the medical treatment of patients deemed (rightly or wrongly) to be ‘medically hopeless’.




Not For Resuscitation (NFR) / Do Not Resuscitate (DNR) directives


Cardiopulmonary resuscitation (CPR) was developed in the 1960s and evolved to become standard practice in hospitals around the world (MacCormack et al 2017; Mills et al 2017 ). When a patient suffers a cardiac or respiratory arrest, CPR is the default option, which may be applied as an emergency treatment without consent ( Levinson et al 2018 ; Sritharan et al 2016 ). CPR is generally taken to include:



external cardiac massage, assisted ventilation via face-mask, cardiac defibrillation, and also the advance life-support measures of medications, intubation and ventilation. ( Hayes 2010 : 112)


The CPR process starts by a call being made to an emergency response team (called ‘medical emergency team’ (MET), or ‘rapid response team’ (RRT) in Australia), compromised of senior medical and nursing clinicians. This process will usually commence unless there are specific and clearly documented instructions to the contrary – for example, where a patient has been validly deemed ‘Not For Resuscitation’ (NFR) or ‘not for RRT’ ( Brown et al 2014 ; Coventry et al 2013 ; Sidhu et al 2007 ).


At some stage during their clinical practice, nurses will be confronted with the difficult moral choice of whether to initiate, participate in decision-making about, follow or refuse to follow a NFR directive (also called a Do Not Resuscitate (DNR) directive, and ‘Do Not Attempt Resuscitation’ (DNAR) directive) ( Bjorklund & Lund 2017 ; De Gendt et al 2007 ; Ganz et al 2012 ; Giles & Moule 2004 )). NFR / DNR / DNAR orders are described by the Australian Commission on Safety and Quality in Health Care ( ACSQHC 2015 : 34) as relating ‘solely and specifically to decisions to not perform cardiopulmonary resuscitation if the patient has a cardiac or respiratory arrest.’ The ACSQHC further explains that ‘In some organisations, decisions about other specific limitations of medical treatment may also be listed as part of a resuscitation plan (e.g. decisions to call a medical emergency team or transfer a patient to intensive care if they deteriorate)’.


The NFR / DNR directive (‘order’) is given by a doctor. Typically, a NFR / DNR directive directs that, in the event of a cardiac or pulmonary arrest, neither emergency nor advance life-support measures will be initiated by physicians, nurses or other hospital staff ( Martin et al 2007 ). The stated aim of NFR / DNR directives is unequivocal: to limit the administration of CPR where it is considered (usually by the patient’s treating doctor) that such efforts would be futile, burdensome or contrary to the patient’s wishes ( Mills et al 2017 ). NFR / DNR is thus a form of NFT, and is probably the most common NFT directive operationalised in health care contexts today.


A decision not to resuscitate a person generally derives from a medical judgment concerning the irreversible nature of that person’s disease, their probable poor or hopeless prognosis, and the related futility or ‘inappropriateness’ of performing CPR ( Willmott et al 2014 ). This is a controversial position, however. As an NFR / DNR decision is based on normative judgments about what constitutes a patient’s ‘best interests’, ‘quality of life’, ‘dignity’ and whether a patient’s preferences and autonomous wishes ought to be respected, deciding whether to make a patient the subject of an NFR / DNR directive is as much a moral decision as it is a medical decision. Others, however, contend that although the decision to perform or not perform CPR has a moral dimension (and one that deserves respect) it nonetheless still primarily involves a medical not an ethical judgment. Hayes (2012 : 80), for example, contends that CPR decision-making comprises three steps:



(i) technical analysis and judgment about the patient’s illness, disease trajectory and expected response to CPR; (ii) moral analysis about the application of that technical judgment and (iii) a discussion with the patient and / or family that seeks to understand the patient, their values and the moral implications of providing or withholding CPR for that patient.


Up until the late 1990s, few health care organisations had operational NFR policies and guidelines – and those that did had poor compliance rates – a situation that placed patients, staff and hospitals at risk ( Collier 1999 ; De Gendt et al 2007 ; Giles & Moule 2004 ; Honan et al 1991 ; Kerridge et al 1994 ; Sidhu et al 2007 ). As a consequence, NFR practices tended to be ‘secret’, characterised by ad hoc, ambiguous and disparate decision-making and communication, with directives often being given without the patient’s or family’s knowledge or consent (see discussion on DNR / NFR in the first edition of this book – Johnstone 1989b ).


Today, a different situation exists in Australian jurisdictions. This is due largely to the problems associated with DNR / NFR directives being made public, 1 which eventually resulted in change. Following recommendations made by various government authorities for hospitals to have NFR / DNR policies, standardised forms for authorising and communicating NFR / DNR directives, and patient information leaflets, as well as the provision of a framework for policy content, health care institutions in Australia, as elsewhere (e.g. New Zealand, South Asia, the United Kingdom (UK), Europe and the United States (US)) now have transparent, operational and appropriately supported NFR / DNR policies, guidelines and practices in place. Even so, problems remain. Although there have been notable improvements in the prevalence and content of NFR / DNR policies and practices in Australian and New Zealand public hospitals and health care institutions over the past three decades, research over the past decade has found that wide variations in NFR / DNR practices and processes continue to exist ( Brown et al 2014 ; Hardy et al 2007 ; Hayes 2012 ; Sidhu et al 2007 ). Notable among the issues identified are: a low rate of documentation (as low as 12% in one case) ( Mills et al 2017 ), ‘social loafing’ (the expectation that someone else will assume responsibility for giving an NFR directive) ( Levinson et al 2018 : 56), readiness by doctors to shift responsibility for making NFR orders onto others ( Sritharan et al 2016 ), and the association of NFR / DNR directives with substandard care ( Sritharan et al 2016 ). UK researchers have made similar findings identifying, as additional problems, erroneously conflating ‘do not resuscitate’ with ‘do not provide active treatment’ as having unintended consequences, and relatives experiencing distressing ambiguous discussions about the issue ( MacCormick et al 2018 ; Perkins et al 2016 ). Issues identified by researchers in other jurisdictions include inconsistencies across five areas: in understanding and implementing the concept of NFR, in decision-making, in communication, and in the management of NFR processes ( Arabi et al 2018 , Fox & Muir 2016).


One of the more controversial problems, however, concerns the lawful authority of doctors to impose an NFR / DNR directives without the consent of the patient or those authorised to act of the patient’s behalf – an issue first raised 30 years ago in Australia by Johnstone (1988 ; see also Endnote 1 in this chapter ). Sritharan and colleagues (2016) correctly explain that laws concerning NFR directives differ across different jurisdictions. In some jurisdictions (e.g. Canada, UK, USA), policies and legislative changes have been operationalised requiring doctors to obtain consent to withhold CPR. For example, in the UK, two important legal challenges in the courts (in 2014 and 2015 respectively) have created legal precedent and have clarified the unequivocal duty of health care professionals to consult patients or their surrogates when making resuscitation decisions ( MacCormick et al 2018 ). The position in other jurisdictions is less clear, however. For example, according to Sritharan and colleagues (2016) , in the Australian State of Victoria, consent is required only:



where a procedure or medical treatment is on offer . Withholding of a futile or overly burdensome treatment, in the case of CPR, does not require consent from anyone other than the treating doctor [emphasis added] ( Sritharan et al 2016 : 685).


This view seems to rest on the assumption that because NFR does not entail the active provision of medical treatment (technically no medical treatment is on offer – that is, the order is not to provide treatment), then consent is not required. (This presumably is because the order essentially entails that ‘not a finger will touch the body’.) They go one to contend that, although good communication is essential when discussing the imposition of an NFR order with families, doctors must nevertheless ‘exercise caution in ensuring discussion around NFR orders is not misconstrued as the seeking of consent ’ ostensibly because ‘this may unfairly place a burden of responsibility for the decision on the family’ [emphasis added] ( Sritharan et al 2016 : 685).


An analysis of Australian judicial deliberations has found that the Supreme Court tends to defer to medical opinion when assessing ‘best interests’ of patients (a standard decision criterion used for adjudicating end-of-life care cases) and to accept the conclusions drawn by medical practitioners on the matter of futile medical treatment ( Willmott et al 2016 ). Adding to the authority of doctors to determine medical futility, the ACSQHC (2015) National consensus statement: essential elements for safe and high-quality end-of-life care likewise upholds the view that doctors are not obliged to provide treatment they deem medically futile. Guiding principle 14 of the Statement reads: ‘Unless required by law, doctors are not obliged to initiate or continue treatments that will not offer a reasonable hope of benefit or improve the patient’s quality of life’ (ACQSHC 2015: 5).


In light of these findings, there is room to suggest, as Youngner (1987) prophetically contended over three decades ago, that DNR directives may be ‘no longer secret, but they are still a problem’. Thus, although the policy situation may have improved, there are still risks (moral, legal and clinical) associated with current NFR / DNR practices (see also Ehlenbach & Curtis 2011 ; Sanders et al 2011 ).


Issues raised


Issues raised by current (and past) NFR / DNR practices can be broadly categorised under three general headings:



  • 1

    NFR / DNR decision-making criteria, guidelines and procedures


  • 2

    documentation and communication of NFR / DNR directives


  • 3

    implementation of NFR / DNR directives.



These issues are of obvious importance, as is the need to ensure that attending clinicians comply with carefully formulated and clearly documented policies and guidelines governing NFR / DNR practices. Without such guidelines and associated compliance by attending health care staff:




  • patients’ rights and interests will be at risk of being infringed (e.g. patients could be resuscitated when they do not wish to be, or not resuscitated when they do wish to be)



  • nurses and other allied health workers will be at risk of having to carry a disproportionate burden of responsibility in regard to actually carrying out NFR / DNR directives (although an NFR / DNR directive might be given in ‘good faith’ medically speaking, it may nevertheless be ‘wrong’ – not just on moral grounds, but on legal grounds as well, especially if it contravenes a patient’s or lawful proxy’s expressed wishes) (see, for example, Northridge v Central Sydney Area Health Service (2000) ). 2



Problems concerning NFR / DNR decision-making criteria, guidelines and procedures


Criteria and guidelines used


Despite the existence of NFR / DNR policies and guidelines, different doctors and nurses may nevertheless appeal to different criteria (to be distinguished here from procedures ) for making NFR / DNR decisions. For example, some doctors and nurses might appeal to quality-of-life criteria (the issue of quality of life is discussed under a separate subheading in this chapter), while others might appeal to sanctity-of-life criteria when making NFR / DNR decisions (discussed in Chapter 10 ). Although NFR / DNR decisions based on either of these criteria might well be in accordance with a patient’s preferences, they might equally be in contravention of them. There have been some notable instances of this. For example, in one case in which end-of-life criteria were applied, a previously fit 90-year-old man who required admission to hospital for multiple medical problems was not resuscitated following a cardiac arrest. The decision not to resuscitate him was made by attending medical staff even though both the patient and his wife had clearly indicated that they wished ‘everything possible’ to be done to try and preserve his life – including CPR in the event of a cardiac arrest ( Hastings Center Report 1982b : 27–8).


In contradistinction to this case, in another case this time involving an appeal to sanctity-of-life criteria, a 70-year-old woman ‘was resuscitated over 70 times within a few days’ (Annas, cited in Bandman & Bandman 1985 : 236). In another similar case, a patient was resuscitated 52 times before ‘family members literally threw themselves across the crash cart to prevent the team from reaching the patient’ for the 53rd time ( Dolan 1988 : 47). Although these cases occurred some time ago, they nonetheless serve to provide important reminders of the moral risks involved when different people use different criteria to inform their NFR / DNR decisions and practice.


Another troubling practice is that of hospital staff deeming patients to be NFR / DNR on the basis of a DNR decision made during a previous hospital admission. For example, if a patient is made DNR during an admission to hospital in March, is discharged, but comes back into hospital in April, the patient is made DNR again on the basis of the March hospital admission decision. Although the degree to which this practice occurs is not known, the study by Sidhu and colleagues of NFR policies and practices in Australian public hospitals (cited earlier) found that, in the case of patients who had an NFR order from a previous admission, only 34% of policies of the hospitals surveyed indicated that ‘a new order was required’ ( Sidhu et al 2007 : 73). In other words, 66% of respondent hospitals left open the possibility of patients being deemed NFR / DNR on the basis of a previous hospital admission. In the case of patients being admitted from another institution with a standing NFR order, only 3% of the policies surveyed contained provisions for dealing with this situation. The rationale behind this is not entirely clear. What is clear, however, is that such a practice is in contravention of acceptable standards of safe and quality care and should be abandoned ( Sanders et al 2011 ).


Equally concerning is the over-reliance on age as a decisional criterion when making NFR / DNR decisions. Many residential care homes for the aged, for example, have a default policy of not resuscitating their residents in the event of either a cardiac or a respiratory arrest. Likewise palliative care units / hospices, where NFR / DNR directives are taken as ‘implicit’ and are assumed – without discussion or consent – to come into effect upon admission. Finally, also not addressed in guidelines are how to resolve disagreements about what criteria should be used to inform NFR / DNR decisions – and how to resolve disagreement generally about whether to prescribe NFR / DNR or reverse a NFR / DNR directive once made. The 2007 study by Sidhu and colleagues, for example, found that 58% of policies neither anticipated nor outlined procedures for reversing NFR / DNR orders that had been given.


The exclusion of patients from decision-making


Despite the widespread acceptance of the principle of patient autonomy and informed consent, patient preferences concerning resuscitation are not documented, inconsistently documented, ambiguously documented, or if documented (such as via an advance care plan) are not taken into consideration – that is, they are ignored ( Levinson et al 2018 ; Mills et al 2017 ).


Excluding patients or their proxies from participating in NFR / DNR decisions is contrary to the accepted ethical standards of contemporary health care practice and indeed of the health care professions ( ACSQHC 2015 ). It also risks unnecessary suffering for the patient (if he / she survives) and their loved ones. For example, when informed that no attempt had been made to resuscitate her husband, the wife of the 90-year-old man (referred to above) reportedly stated that the decision was ‘against her wishes’ and that:



Doing everything […] is the difference between life and death. The doctor was playing God when he decided he should not try to save my husband. You’re not playing God when you’ve tried everything and exhausted all methods. All I wanted was for them to try. My husband knew how to love and be loved. That was his quality of life. That suited him and it suited me. ( Hastings Center Report 1982b : 28)


In the past, health care professionals have strongly believed that patients should not be ‘burdened’ with having to decide whether they should be resuscitated in the event of a cardiac arrest – particularly if the patient’s condition is ‘medically hopeless’ and any further treatment – including CPR – would be ‘futile’ ( Loewy 1991 ; Scofield 1991 ; Tomlinson & Brody 1990 ). Some have gone even further to suggest that, in some instances, health care professionals have no obligation to engage the patient in decision-making – pointing out that, ‘under certain circumstances, arousing a dying patient to inform them of their imminent demise runs counter to the principle of beneficence in health care’ ( Tonelli 2005 : 637). This stance has resulted – and continues to result – in patients (or their proxies) sometimes not being consulted about an NFR / DNR directive even though institutional policy has required that their consent be obtained and even though research has consistently shown that a majority of patients and their proxies want to be involved in decision-making concerning NFR / DNR directives (see Willmott et al 2016 ). An important lesson here, as Sidhu and colleagues (2007 : 75) warn, is that ‘the presence of a policy does not guarantee that it will be followed’.


Misinterpretation of directives


Another difficulty associated with current NFR / DNR policies and guidelines is that they are vulnerable to being misinterpreted, which, in turn, can result in the under-treatment and substandard care of patients ( Brown et al 2014 ). An example of the way in which a NFR / DNR directive can be misinterpreted can be found in the case of a dying patient who had pulmonary congestion and pneumonia, and, associated with these two conditions, copious mucus production. In this case, the nurses (mis)interpreted the DNR directive to include withholding oropharyngeal / nasopharyngeal suctioning. As a result, the patient was left, quite literally, to drown in his own secretions – until another nurse detected the error and took immediate action to correct the other nurses’ misinterpretation of the directive. The lesson to be learned from this case – and others like it – is that ‘no code’ does not mean ‘no care’ ( Heyland et al 2006 ).


Problems concerning the documentation and communication of NFR / DNR directives


A second issue of concern in the NFR / DNR debate involves the use of disparate means by which DNR directives are documented and communicated to members of the health care team. In the past, NFR / DNR directives were communicated using the following questionable processes:




  • Directives being given verbally only (i.e. they were not formally documented in the patient’s medical or nursing notes). This practice came about largely because doctors were ‘loathe to indicate in written notes in patient records that a patient [was] not for resuscitation’ ( Social Development Committee 1987 : 108).



  • Directives being ‘confirmed’ by sticking coloured dots (usually black ones) or scribbling an asterisk either on the patient’s medical history chart and / or by the patient’s name on the ward’s bed allocation board. As a point of interest, in 1988 the Association of Medical Directors of Victorian Hospitals recommended to the Victorian Hospital Association that ‘a round white sticker with “sky” blue border and an oblique “sky” blue stripe be adopted by hospitals to denote Not For Resuscitation’. They advised that the sticker should be ‘placed on the front of the patient record, on the bed card and on the patient’s wristband’ ( Victorian Hospital Association Report 1988 : 3).



  • Directives being ‘confirmed’ by pencilling the initials ‘NFR’ or ‘DNR’ or some other equivalent in an inconspicuous place on the patient’s medical history or nursing care plan, or both.



  • Directives being written euphemistically as ‘routine nursing care only’, or ‘comfort care only’.



Although once commonly accepted throughout institutional health care settings, these modes of communicating NFR / DNR directives are unacceptable. Not only do they fall far short of accepted standards of documentation, but they risk miscommunication and misinterpretation of care plans, which, in turn, creates the potential for ‘inadequate and poor quality’ medical and nursing care ( Brown et al 2014 : 99; see also Chen et al 2009 ; Sidhu et al 2007 ). Even so, acronyms and ambiguous terminology continue to be used. For example, Brown and colleagues (2014) found that the variations of the following ambiguous terms were frequently used in patient charts: ‘ward measures’, ‘ward measures only’, ‘active ward measures’, ‘active ward management’, ‘medical ward care’. Because the meaning of these terms was unclear, the capacity for good communication was impaired. Even the acronyms ‘NFR’ and ‘DNR’ themselves have been called into question on account of their also being vulnerable to misinterpretation. In its background paper on End-of-life care in acute hospitals , for example, the Australian Commission on Safety and Quality in Health Care ( ACSQHC) (2013 : 36) noted that, during its consultation process, it found that:



different participants could mean quite different things when using the terms NFR and DNR. Some participants used NFR very specifically to mean not for chest compressions in the event of a cardiopulmonary arrest, while others used them interchangeably with terms such as ‘for palliation’ or ‘for comfort care’. It appears that confusion about what such terms actually mean in practice is common.


Problems concerning the implementation of NFR / DNR directives


Even when all proper processes have been followed, a nurse might still be left in a quandary about whether to uphold a given NFR / DNR directive and may, in practice, experience difficulties implementing a directive even though ‘medically indicated’ and lawfully prescribed. Compounding this problem is that ‘nurses are often excluded from the resuscitation decision-making process despite their desire to participate’ ( Ganz et al 2012 : 848). This, in turn, may delay the initiation and / or avoidance of resuscitation being actively practised by some nurses ( Ganz et al 2012 ).


Most nurses probably feel comfortable carrying out NFR / DNR directives and may even be at the forefront of encouraging doctors to prescribe them. Some nurses, however, may experience significant difficulties because of poor or ambiguous organisational practices.


For instance, there have been a small number of cases in which nurses have been dismissed from their places of employment because of deciding not to initiate resuscitation on a patient even though no NFR / DNR directive was in place. In a little-known Australian case, for example, a registered nurse was dismissed from her job and also faced disciplinary action for allegedly ‘disobeying a written directive to continue medical treatment’ on a seriously ill elderly woman and, on her own volition, deciding that the patient should be ‘classified as not for resuscitation’ ( Collier 1999 : 2). Although the patient’s physician is reported to have later agreed that a ‘not for resuscitation order’ would have been given, hospital authorities apparently took the position that the dismissal was justified on the grounds that the nurse had contravened hospital policies ( Collier 1999 ).


The issue of implementing NFR / DNR directives is of particular concern to nurses since they are the ones often left with the ultimate decision of whether or not to initiate CPR in an arrest situation. They are thus also invariably left with the burden of having to accept the responsibility for the consequences of both their actions and their omissions in cardiac and respiratory arrest situations.


Improving NFR / DNR practices


Most in the field agree that the status quo is not acceptable and that clear guidance in the form of standards, policies and protocols is needed to remove the ambiguities that continue to undermine safe NFR / DNR practice and ensure the safety and quality of care of patients whose severe illnesses may render CPR in the event of a cardiopulmonary arrest unviable ( Arabi et al 2018 ; Coventry et al 2013 ; Perkins et al 2016 ). Others suggest that, due to the problems that continue to be associated with NFR / DNR / DNAR directives and their demonstrable shortcomings, they should quite simply be replaced with a more effective clinical process ( Fritz et al 2017 ; Thomas et al 2014 ). One proposal (trialled and implemented in some Australian jurisdictions) is a clinical framework called ‘goals of care’ (GOC) ( Thomas et al 2014 ). Widely used in the US, the framework has been designed specifically to replace NFR / DNR orders, containing instead provision for three treatment categories: curative / restorative, palliative and terminal. The GOC are devised in consultation with the patient or proxy and revised as appropriate (i.e. depending on the patient’s medical condition, the patient can move between categories; when GOC are changed, they are documented on a new form) ( Thomas et al 2014 ).


A second proposal has been developed in the UK and is known by the acronym ReSPECT – ‘recommended summary plan for emergency care and treatment’ ( Fritz et al 2017 ). This framework, like the GOC framework, has been developed to replace NFR / DNA forms, ‘to provide additional support for conversations about goals of care and to provide guidance to clinicians about which treatment would or would not be wanted in an emergency event of a patient having to make a decision themselves’ ( Fritz et al 2017 : 3).


In institutions where NFR / DNR practices are likely to continue, the following recommendations are made in the interests of redressing the framework’s shortcomings:




  • There needs to be a recognition that NFR / DNR decisions are not just ‘technical decisions’ based on ‘medical facts’ about a patient’s probable poor prognosis or illness trajectory; they are also fundamentally moral decisions involving normative judgments about the ‘best interests’, value, meaning and quality of patients’ lives – something that clinicians may not always be well placed to judge.



  • Any NFR / DNR decision made ought to reflect the patient’s [or the proxy’s] informed decision .



  • NFR / DNR decisions / directives should be clearly written on patients’ medical and nursing charts, and should include all the relevant information upon which the decisions have been based (including descriptions of the patients’ statements relevant to their request that life-saving measures be withheld, who has been involved in the decision-making, and whether the family has been informed); a standardised ‘NFR / DNR authorisation’ or a ‘Limitation of Medical Treatment’ form should also be signed.



  • Mechanisms must be established to ensure the correct interpretations are made of non-treatment directives.



  • Once a NFR / DNR decision has been made, it should be reviewed and reaffirmed in writing at intervals which are appropriate to the patient’s changing condition.



  • A NFR / DNR directive should be able to be revoked at any time at the request of the competent patient or, in the case of the incompetent patient, by the cited next-of-kin or legal representative, or as is morally appropriate ( Sidhu et al 2007 ).



  • A NFR / DNR decision should be carried out only by those who have freely, and possessing the necessary information, agreed to carry out such directives. Where nurses or doctors have a genuine conscientious objection to following a NFR / DNR directive, morally they ought to be permitted to abstain conscientiously from being actively involved in caring for the patient in question.



By incorporating these and other similar considerations in NFR / DNR policies and guidelines, nurses and doctors can rest assured that they truly have done all that is possible to ensure that patients’ rights and interests have been properly respected in life-threatening situations, and that they have not overstepped their authority as health care providers. Members of the community at large can also rest assured that their assumptions about being well cared for upon coming into hospital or other related health care agencies are not misplaced, and that they can most assuredly trust and rely on those people who will most probably care for them during those delicate, life-threatening moments which are all too often characterised by intense personal need and human vulnerability.




Issues raised


Issues raised by current (and past) NFR / DNR practices can be broadly categorised under three general headings:



  • 1

    NFR / DNR decision-making criteria, guidelines and procedures


  • 2

    documentation and communication of NFR / DNR directives


  • 3

    implementation of NFR / DNR directives.



These issues are of obvious importance, as is the need to ensure that attending clinicians comply with carefully formulated and clearly documented policies and guidelines governing NFR / DNR practices. Without such guidelines and associated compliance by attending health care staff:




  • patients’ rights and interests will be at risk of being infringed (e.g. patients could be resuscitated when they do not wish to be, or not resuscitated when they do wish to be)



  • nurses and other allied health workers will be at risk of having to carry a disproportionate burden of responsibility in regard to actually carrying out NFR / DNR directives (although an NFR / DNR directive might be given in ‘good faith’ medically speaking, it may nevertheless be ‘wrong’ – not just on moral grounds, but on legal grounds as well, especially if it contravenes a patient’s or lawful proxy’s expressed wishes) (see, for example, Northridge v Central Sydney Area Health Service (2000) ). 2





Problems concerning NFR / DNR decision-making criteria, guidelines and procedures


Criteria and guidelines used


Despite the existence of NFR / DNR policies and guidelines, different doctors and nurses may nevertheless appeal to different criteria (to be distinguished here from procedures ) for making NFR / DNR decisions. For example, some doctors and nurses might appeal to quality-of-life criteria (the issue of quality of life is discussed under a separate subheading in this chapter), while others might appeal to sanctity-of-life criteria when making NFR / DNR decisions (discussed in Chapter 10 ). Although NFR / DNR decisions based on either of these criteria might well be in accordance with a patient’s preferences, they might equally be in contravention of them. There have been some notable instances of this. For example, in one case in which end-of-life criteria were applied, a previously fit 90-year-old man who required admission to hospital for multiple medical problems was not resuscitated following a cardiac arrest. The decision not to resuscitate him was made by attending medical staff even though both the patient and his wife had clearly indicated that they wished ‘everything possible’ to be done to try and preserve his life – including CPR in the event of a cardiac arrest ( Hastings Center Report 1982b : 27–8).


In contradistinction to this case, in another case this time involving an appeal to sanctity-of-life criteria, a 70-year-old woman ‘was resuscitated over 70 times within a few days’ (Annas, cited in Bandman & Bandman 1985 : 236). In another similar case, a patient was resuscitated 52 times before ‘family members literally threw themselves across the crash cart to prevent the team from reaching the patient’ for the 53rd time ( Dolan 1988 : 47). Although these cases occurred some time ago, they nonetheless serve to provide important reminders of the moral risks involved when different people use different criteria to inform their NFR / DNR decisions and practice.


Another troubling practice is that of hospital staff deeming patients to be NFR / DNR on the basis of a DNR decision made during a previous hospital admission. For example, if a patient is made DNR during an admission to hospital in March, is discharged, but comes back into hospital in April, the patient is made DNR again on the basis of the March hospital admission decision. Although the degree to which this practice occurs is not known, the study by Sidhu and colleagues of NFR policies and practices in Australian public hospitals (cited earlier) found that, in the case of patients who had an NFR order from a previous admission, only 34% of policies of the hospitals surveyed indicated that ‘a new order was required’ ( Sidhu et al 2007 : 73). In other words, 66% of respondent hospitals left open the possibility of patients being deemed NFR / DNR on the basis of a previous hospital admission. In the case of patients being admitted from another institution with a standing NFR order, only 3% of the policies surveyed contained provisions for dealing with this situation. The rationale behind this is not entirely clear. What is clear, however, is that such a practice is in contravention of acceptable standards of safe and quality care and should be abandoned ( Sanders et al 2011 ).


Equally concerning is the over-reliance on age as a decisional criterion when making NFR / DNR decisions. Many residential care homes for the aged, for example, have a default policy of not resuscitating their residents in the event of either a cardiac or a respiratory arrest. Likewise palliative care units / hospices, where NFR / DNR directives are taken as ‘implicit’ and are assumed – without discussion or consent – to come into effect upon admission. Finally, also not addressed in guidelines are how to resolve disagreements about what criteria should be used to inform NFR / DNR decisions – and how to resolve disagreement generally about whether to prescribe NFR / DNR or reverse a NFR / DNR directive once made. The 2007 study by Sidhu and colleagues, for example, found that 58% of policies neither anticipated nor outlined procedures for reversing NFR / DNR orders that had been given.


The exclusion of patients from decision-making


Despite the widespread acceptance of the principle of patient autonomy and informed consent, patient preferences concerning resuscitation are not documented, inconsistently documented, ambiguously documented, or if documented (such as via an advance care plan) are not taken into consideration – that is, they are ignored ( Levinson et al 2018 ; Mills et al 2017 ).


Excluding patients or their proxies from participating in NFR / DNR decisions is contrary to the accepted ethical standards of contemporary health care practice and indeed of the health care professions ( ACSQHC 2015 ). It also risks unnecessary suffering for the patient (if he / she survives) and their loved ones. For example, when informed that no attempt had been made to resuscitate her husband, the wife of the 90-year-old man (referred to above) reportedly stated that the decision was ‘against her wishes’ and that:



Doing everything […] is the difference between life and death. The doctor was playing God when he decided he should not try to save my husband. You’re not playing God when you’ve tried everything and exhausted all methods. All I wanted was for them to try. My husband knew how to love and be loved. That was his quality of life. That suited him and it suited me. ( Hastings Center Report 1982b : 28)


In the past, health care professionals have strongly believed that patients should not be ‘burdened’ with having to decide whether they should be resuscitated in the event of a cardiac arrest – particularly if the patient’s condition is ‘medically hopeless’ and any further treatment – including CPR – would be ‘futile’ ( Loewy 1991 ; Scofield 1991 ; Tomlinson & Brody 1990 ). Some have gone even further to suggest that, in some instances, health care professionals have no obligation to engage the patient in decision-making – pointing out that, ‘under certain circumstances, arousing a dying patient to inform them of their imminent demise runs counter to the principle of beneficence in health care’ ( Tonelli 2005 : 637). This stance has resulted – and continues to result – in patients (or their proxies) sometimes not being consulted about an NFR / DNR directive even though institutional policy has required that their consent be obtained and even though research has consistently shown that a majority of patients and their proxies want to be involved in decision-making concerning NFR / DNR directives (see Willmott et al 2016 ). An important lesson here, as Sidhu and colleagues (2007 : 75) warn, is that ‘the presence of a policy does not guarantee that it will be followed’.


Misinterpretation of directives


Another difficulty associated with current NFR / DNR policies and guidelines is that they are vulnerable to being misinterpreted, which, in turn, can result in the under-treatment and substandard care of patients ( Brown et al 2014 ). An example of the way in which a NFR / DNR directive can be misinterpreted can be found in the case of a dying patient who had pulmonary congestion and pneumonia, and, associated with these two conditions, copious mucus production. In this case, the nurses (mis)interpreted the DNR directive to include withholding oropharyngeal / nasopharyngeal suctioning. As a result, the patient was left, quite literally, to drown in his own secretions – until another nurse detected the error and took immediate action to correct the other nurses’ misinterpretation of the directive. The lesson to be learned from this case – and others like it – is that ‘no code’ does not mean ‘no care’ ( Heyland et al 2006 ).




Criteria and guidelines used


Despite the existence of NFR / DNR policies and guidelines, different doctors and nurses may nevertheless appeal to different criteria (to be distinguished here from procedures ) for making NFR / DNR decisions. For example, some doctors and nurses might appeal to quality-of-life criteria (the issue of quality of life is discussed under a separate subheading in this chapter), while others might appeal to sanctity-of-life criteria when making NFR / DNR decisions (discussed in Chapter 10 ). Although NFR / DNR decisions based on either of these criteria might well be in accordance with a patient’s preferences, they might equally be in contravention of them. There have been some notable instances of this. For example, in one case in which end-of-life criteria were applied, a previously fit 90-year-old man who required admission to hospital for multiple medical problems was not resuscitated following a cardiac arrest. The decision not to resuscitate him was made by attending medical staff even though both the patient and his wife had clearly indicated that they wished ‘everything possible’ to be done to try and preserve his life – including CPR in the event of a cardiac arrest ( Hastings Center Report 1982b : 27–8).


In contradistinction to this case, in another case this time involving an appeal to sanctity-of-life criteria, a 70-year-old woman ‘was resuscitated over 70 times within a few days’ (Annas, cited in Bandman & Bandman 1985 : 236). In another similar case, a patient was resuscitated 52 times before ‘family members literally threw themselves across the crash cart to prevent the team from reaching the patient’ for the 53rd time ( Dolan 1988 : 47). Although these cases occurred some time ago, they nonetheless serve to provide important reminders of the moral risks involved when different people use different criteria to inform their NFR / DNR decisions and practice.


Another troubling practice is that of hospital staff deeming patients to be NFR / DNR on the basis of a DNR decision made during a previous hospital admission. For example, if a patient is made DNR during an admission to hospital in March, is discharged, but comes back into hospital in April, the patient is made DNR again on the basis of the March hospital admission decision. Although the degree to which this practice occurs is not known, the study by Sidhu and colleagues of NFR policies and practices in Australian public hospitals (cited earlier) found that, in the case of patients who had an NFR order from a previous admission, only 34% of policies of the hospitals surveyed indicated that ‘a new order was required’ ( Sidhu et al 2007 : 73). In other words, 66% of respondent hospitals left open the possibility of patients being deemed NFR / DNR on the basis of a previous hospital admission. In the case of patients being admitted from another institution with a standing NFR order, only 3% of the policies surveyed contained provisions for dealing with this situation. The rationale behind this is not entirely clear. What is clear, however, is that such a practice is in contravention of acceptable standards of safe and quality care and should be abandoned ( Sanders et al 2011 ).


Equally concerning is the over-reliance on age as a decisional criterion when making NFR / DNR decisions. Many residential care homes for the aged, for example, have a default policy of not resuscitating their residents in the event of either a cardiac or a respiratory arrest. Likewise palliative care units / hospices, where NFR / DNR directives are taken as ‘implicit’ and are assumed – without discussion or consent – to come into effect upon admission. Finally, also not addressed in guidelines are how to resolve disagreements about what criteria should be used to inform NFR / DNR decisions – and how to resolve disagreement generally about whether to prescribe NFR / DNR or reverse a NFR / DNR directive once made. The 2007 study by Sidhu and colleagues, for example, found that 58% of policies neither anticipated nor outlined procedures for reversing NFR / DNR orders that had been given.




The exclusion of patients from decision-making


Despite the widespread acceptance of the principle of patient autonomy and informed consent, patient preferences concerning resuscitation are not documented, inconsistently documented, ambiguously documented, or if documented (such as via an advance care plan) are not taken into consideration – that is, they are ignored ( Levinson et al 2018 ; Mills et al 2017 ).


Excluding patients or their proxies from participating in NFR / DNR decisions is contrary to the accepted ethical standards of contemporary health care practice and indeed of the health care professions ( ACSQHC 2015 ). It also risks unnecessary suffering for the patient (if he / she survives) and their loved ones. For example, when informed that no attempt had been made to resuscitate her husband, the wife of the 90-year-old man (referred to above) reportedly stated that the decision was ‘against her wishes’ and that:



Doing everything […] is the difference between life and death. The doctor was playing God when he decided he should not try to save my husband. You’re not playing God when you’ve tried everything and exhausted all methods. All I wanted was for them to try. My husband knew how to love and be loved. That was his quality of life. That suited him and it suited me. ( Hastings Center Report 1982b : 28)


In the past, health care professionals have strongly believed that patients should not be ‘burdened’ with having to decide whether they should be resuscitated in the event of a cardiac arrest – particularly if the patient’s condition is ‘medically hopeless’ and any further treatment – including CPR – would be ‘futile’ ( Loewy 1991 ; Scofield 1991 ; Tomlinson & Brody 1990 ). Some have gone even further to suggest that, in some instances, health care professionals have no obligation to engage the patient in decision-making – pointing out that, ‘under certain circumstances, arousing a dying patient to inform them of their imminent demise runs counter to the principle of beneficence in health care’ ( Tonelli 2005 : 637). This stance has resulted – and continues to result – in patients (or their proxies) sometimes not being consulted about an NFR / DNR directive even though institutional policy has required that their consent be obtained and even though research has consistently shown that a majority of patients and their proxies want to be involved in decision-making concerning NFR / DNR directives (see Willmott et al 2016 ). An important lesson here, as Sidhu and colleagues (2007 : 75) warn, is that ‘the presence of a policy does not guarantee that it will be followed’.




Misinterpretation of directives


Another difficulty associated with current NFR / DNR policies and guidelines is that they are vulnerable to being misinterpreted, which, in turn, can result in the under-treatment and substandard care of patients ( Brown et al 2014 ). An example of the way in which a NFR / DNR directive can be misinterpreted can be found in the case of a dying patient who had pulmonary congestion and pneumonia, and, associated with these two conditions, copious mucus production. In this case, the nurses (mis)interpreted the DNR directive to include withholding oropharyngeal / nasopharyngeal suctioning. As a result, the patient was left, quite literally, to drown in his own secretions – until another nurse detected the error and took immediate action to correct the other nurses’ misinterpretation of the directive. The lesson to be learned from this case – and others like it – is that ‘no code’ does not mean ‘no care’ ( Heyland et al 2006 ).




Problems concerning the documentation and communication of NFR / DNR directives


A second issue of concern in the NFR / DNR debate involves the use of disparate means by which DNR directives are documented and communicated to members of the health care team. In the past, NFR / DNR directives were communicated using the following questionable processes:




  • Directives being given verbally only (i.e. they were not formally documented in the patient’s medical or nursing notes). This practice came about largely because doctors were ‘loathe to indicate in written notes in patient records that a patient [was] not for resuscitation’ ( Social Development Committee 1987 : 108).



  • Directives being ‘confirmed’ by sticking coloured dots (usually black ones) or scribbling an asterisk either on the patient’s medical history chart and / or by the patient’s name on the ward’s bed allocation board. As a point of interest, in 1988 the Association of Medical Directors of Victorian Hospitals recommended to the Victorian Hospital Association that ‘a round white sticker with “sky” blue border and an oblique “sky” blue stripe be adopted by hospitals to denote Not For Resuscitation’. They advised that the sticker should be ‘placed on the front of the patient record, on the bed card and on the patient’s wristband’ ( Victorian Hospital Association Report 1988 : 3).



  • Directives being ‘confirmed’ by pencilling the initials ‘NFR’ or ‘DNR’ or some other equivalent in an inconspicuous place on the patient’s medical history or nursing care plan, or both.



  • Directives being written euphemistically as ‘routine nursing care only’, or ‘comfort care only’.



Although once commonly accepted throughout institutional health care settings, these modes of communicating NFR / DNR directives are unacceptable. Not only do they fall far short of accepted standards of documentation, but they risk miscommunication and misinterpretation of care plans, which, in turn, creates the potential for ‘inadequate and poor quality’ medical and nursing care ( Brown et al 2014 : 99; see also Chen et al 2009 ; Sidhu et al 2007 ). Even so, acronyms and ambiguous terminology continue to be used. For example, Brown and colleagues (2014) found that the variations of the following ambiguous terms were frequently used in patient charts: ‘ward measures’, ‘ward measures only’, ‘active ward measures’, ‘active ward management’, ‘medical ward care’. Because the meaning of these terms was unclear, the capacity for good communication was impaired. Even the acronyms ‘NFR’ and ‘DNR’ themselves have been called into question on account of their also being vulnerable to misinterpretation. In its background paper on End-of-life care in acute hospitals , for example, the Australian Commission on Safety and Quality in Health Care ( ACSQHC) (2013 : 36) noted that, during its consultation process, it found that:



different participants could mean quite different things when using the terms NFR and DNR. Some participants used NFR very specifically to mean not for chest compressions in the event of a cardiopulmonary arrest, while others used them interchangeably with terms such as ‘for palliation’ or ‘for comfort care’. It appears that confusion about what such terms actually mean in practice is common.

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Oct 7, 2019 | Posted by in NURSING | Comments Off on Ethical issues in end-of-life care
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