12. End-of-life decision-making and the nursing profession

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CHAPTER 12. End-of-life decision-making and the nursing profession
L earning objectives

▪ Discuss critically ‘Not For Treatment’ (NFT) directives and ‘Do Not Resuscitate’ (DNR) directives.
▪ Discuss critically the moral criteria that might be used to justify an NFT or DNR directive.
▪ Examine critically the ethical dimensions of NFT and DNR directives.
▪ Discuss critically ways in which NFT and DNR 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 abandoned as a decisional criteria 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.

I ntroduction

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 ‘aggressive’ (invasive) treatments (such as mechanical ventilation/life-support machines, surgery, emergency cardiopulmonary resuscitation, haemodialysis, and chemotherapy), or the use of ‘less aggressive’ (less invasive) treatments (such as the administration of antibiotics, cardiac arrhythmic drugs, blood transfusions, and intravenous and/or nasogastric hydration). Whether involving ‘aggressive’ or ‘non-aggressive’ 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’ (Cantor 2004: 1400) and/or will ultimately die, regardless of the treatment given (Cantor 1995; Chiarella 2006; Morreim 2004; Walter 2004). The question remains, however, of who should decide these things and on what basis?
The question 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. 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 significant and distressing moral dilemma for decision-makers — and one that is not easily resolved (Fine & Mayo 2003: 744). The dilemmas and distress 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 are significantly outweighed by the loss of quality of life due to the toxic side effects of the treatment (Ashby & Stoffell 1991: 1322; Dawe et al 2002; Mendelson & Jost 2003).
At the forefront of the moral controversies and dilemmas about end-of-life decision-making are the issues of Not For Treatment (NFT) directives, withholding/withdrawing food and fluids (already discussed in the previous chapter) and Do Not Resuscitate (DNR)/Not For Resuscitation (NFR) directives, and the criteria or bases used for justifying these directives such as ‘medical futility’, end-of-life considerations, and advance directives/advance care planning. The practical and moral significance of these issues for attending health care providers (particularly those working in hospitals) is underscored when it is considered that most deaths occur in hospitals and that a significant majority of these deaths occur after a decision has been made — often by someone else — to forgo life-sustaining therapy (e.g. cardiopulmonary resuscitation) (Asch et al 1995; Ayres 1991; Hammes & Rooney 1998; Hardy et al 2007; Loewy & Carlson 1993; Lynn & Teno 1995; Mendelson & Jost 2003). The significance of these issues for the nursing profession, in turn, is underscored by the fact that 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 (see, e.g. Dawe et al 2002; Heyland 2006). Since these issues have important moral implications for the profession and practice of nursing, some discussion of them here is warranted.

N ot 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 at the end stage of life?

T he 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 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). Since the 1990s, however, a key question that has come to dominate bioethical thought is: Are people at the end stages of their lives (or their proxies) morally entitled to request ‘medically inappropriate’ ‘non-beneficial’ and ‘expensive’ (futile) medical treatment? Is it right to refuse such requests? At stake in answering these questions is not just the entitlements of dying individuals but, as Tong concludes (p 167):
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).

W ho 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 are 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, while 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 to comply with such requests in so-called medically hopeless cases. 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 (p 160):
[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’.
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, e.g. 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’.

D o not resuscitate (DNR) directives1

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, or follow a Do Not Resuscitate (DNR) directive (also called Not For Resuscitation (NFR), Do Not Attempt Resuscitation (DNAR), No Code, or Not for CPR). This type of directive is usually given by a doctor to ‘prevent the use of cardiopulmonary resuscitation (CPR) in situations when it is deemed futile or unwanted’ (Sidhu et al 2007: 72). The acronym ‘CPR’ is commonly used to refer to ‘a range of resuscitative efforts, including basic and advanced cardiac life support to reverse a cardiac or pulmonary arrest’ (Sidhu et al 2007: 72). Typically, a 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). 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 is popularly thought to flow from a medical judgment concerning the irreversible nature of that person’s disease and their probable poor or hopeless prognosis (Haines et al 1990). The validity of this view has, however, been successfully challenged over the past two decades on account of critics showing that the DNR decision is neither a medical decision nor a legal decision per se, but a moral decision since it is based primarily on moral values such as those concerning ‘the meaning, sanctity, and quality of life’ (Yarling & McElmurry 1986: 125).
Even though there have been notable improvements in the prevalence and content of DNR (NFR) policies and practices in Australian public hospitals and health care institutions, recent research has found that wide variations nonetheless continue to exist (see, e.g. Hardy et al 2007; Middlewood et al 2001; Sidhu et al 2007). For example, in a 2005 survey of 222 hospitals (of which 157 or 71% responded), it was found that only 54% (n=84) had NFR policies, 39% (n=62) had standardised order forms, and only 3% (n=4) had patient information leaflets (Sidhu et al 2007). Significantly, the researchers also found that hospitals with more than 200 beds were more likely to have NFR policies than those with 60–200 beds (Sidhu et al 2007). Worryingly, almost half (47%) of the policies did not define NFR and few (less than 21%) addressed the issue of dealing with disagreement about NFR decisions. In light of these findings, there is room to suggest, as Younger (1987) did in a classic work published over two decades ago, that DNR directives may be ‘no longer secret, but they are still a problem’ (see, also Hemphill 2007). Thus, while the policy situation has improved, there are still risks (moral, legal and clinical) associated with current DNR practices.

R aising the issues

There is an obvious need to have and to comply with carefully formulated and clearly documented policies and guidelines governing DNR practices. Without such guidelines:
▪ patients’ rights and interests will be at risk of being unjustly violated (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 and possible harm in regard to actually carrying out DNR/CPR directives (although a DNR directive might be given in ‘good faith’ medically speaking, it may nevertheless be vulnerable to criticism and censure — not just on moral grounds but on legal grounds as well, especially if it contravenes a patient’s expressed wishes) (see, e.g. Northridge v Central Sydney Area Health Service [2000]).
The following two cases, those of Mr H and Mr X, illustrate the kinds of problems that can be encountered when DNR policies are inadequate or attending staff fail to uphold best practice standards in relation to DNR/CPR practices. Although these cases occurred several years ago (both in the cultural context of Australia), they nonetheless yield some important lessons for contemporary health care providers and those at the forefront of policy change in this area.
Case 1: Mr H2

Mr H, 60 years old, was admitted to the intensive care unit of a major city hospital with a provisional diagnosis of septicaemia. At the time of admission he was pale, markedly short of breath, and had an auxiliary temperature of 40˚C. Mr H’s past medical history included severe coronary artery disease and a malignant condition. The malignant condition had, however, been successfully treated with chemotherapy, and Mr H was presently in a state of remission. In the light of his provisional diagnosis, a regime of intravenous antibiotics was commenced.
A few hours after Mr H’s admission, the on-coming nursing staff for the afternoon shift gathered for ‘hand-over’. During hand-over, the charge nurse informed the nursing staff present that she had just received a telephone call from Mr H’s physician confirming that the patient was Not For Resuscitation (NFR). As she proceeded to give the afternoon report, a second consulting physician — also involved in Mr H’s medical care — approached the assembled nursing staff and reaffirmed her colleague’s initial NFR directive. The physician then wrote up her clinical assessment of Mr H and made other important documentations on his medical history chart. She did not, however, make any attempt to document the NFR directive which she had just given to the nursing staff. This ‘oversight’ was later dealt with by the nursing staff writing the initials ‘NFR’, in pencil, on the top left-hand corner of Mr H’s nursing care plan, which was held in his medical history chart.
A short time later, a nurse who had been sent to help in the unit became involved in a deep conversation with Mr H. During the conversation, Mr H spontaneously and emphatically exclaimed: ‘Oh, I wish they would operate on me!’ (referring to coronary artery bypass surgery, the opportunity for which he had recently been denied). In response to this the nurse gently asked Mr H whether he had discussed the possibility of bypass surgery with his doctor.
To this Mr H replied quite openly: ‘Sure I have, many times, but they won’t do it because they say there’s only a 50–50 chance of success …’. He went on to say: ‘What can you do? You can’t hit them over the head with a bottle and make them do it, can you?’. The nurse inquired further: ‘So even though you’d only have a 50–50 chance — you’d still want this coronary bypass surgery?’
Mr H replied, sombrely:
Oh, yes. I’d do anything to buy some time. You see, my wife’s very ill at home. She has cancer which can’t be operated on. She’s always been totally dependent on me — even more so since she’s been sick. She doesn’t have very long to live, and all I want is to live long enough for her, because she’s so afraid of being left alone. We can’t do much, and we each stay in separate rooms at home. But at least we’re reasonably independent and together. I can bring her a cup of tea when she wants it and things like that. I don’t care about me, but I want to live long enough for her … she’s so afraid of being left alone …
Smiling, Mr H concluded: ‘It’s such a comfort knowing that you and the doctors are doing all that you can for me here …’
Realising that Mr H clearly had no knowledge of the NFR directive against him, the nurse went immediately to discuss the matter with the other nurses, who were still in the nurses’ bay, having not yet moved to care for their respective patients. There, she discreetly asked whether Mr H or his relatives had been involved in making the NFR decision. To this question one nurse replied: ‘Oh! Surely that’s silly to include the patient or the relatives …’ and, almost simultaneously, another nurse replied: ‘No. We don’t do that in this hospital. It’s the doctors’ decision, and we’re obliged to obey their orders …’.
The nurse caring for Mr H then attempted to point out that her patient had indicated that he very definitely wished to risk the odds of active resuscitation. She then asked further whether the doctors were aware of Mr H’s desires. To this, the nurse in charge replied sternly: ‘Of course the doctors know! It’s their decision, and it’s the policy of this hospital to follow such orders.’
A few days later, Mr H’s temperature dropped significantly to within normal limits. He stated that he felt better and was looking forward to going home. His blood cultures came back negative (negating his provisional diagnosis of septicaemia), his heart rate was more stable, and his breathing continued to improve. Despite this, however, the NFR directive was not rescinded. Mr H’s condition dramatically improved even further one afternoon when he was given a stat dose of intravenous lasix (a diuretic). Following this, it was decided that the presenting medical condition had not, in fact, been septicaemia but pulmonary congestion (secondary to his heart disease) and pneumonia.
Just six days after his initial admission into the intensive care unit, Mr H was judged sufficiently well recovered to be discharged home. He left, happy, thanking the nursing staff for all that they had done and expressing his eagerness to leave and be reunited with his dying wife.
Rightly troubled by the incident, the nurse made an appointment to discuss the matter with the then director of nursing. During the conversation, the nurse indicated that in future she would override any nurse in charge and would contact the prescribing doctor to clarify an existing NFR directive. To this the director of nursing replied:
Well, of course, if you had contacted the doctors involved in this case, you would probably have found that they wouldn’t be very forthcoming anyway. In fact, they would probably have told you it was not your concern. You will find here that it is really the doctors’ decision in cases like these, since it is they who have the contract with the patient, not the nurses …
Case 2: Mr X

The second case to be considered here is taken from the Victorian State Government Social Development Committee’s Inquiry into options for dying with dignity: second and final report (Social Development Committee 1987). It involves the case of Mr X, who was also cared for in a major city hospital.
Mr X, 78 years old, was admitted to hospital with a provisional diagnosis of ‘Transitional Cell Carcinoma, with metastatic spread to the lungs, liver and spinal cord and brain’ (Social Development Committee 1987: 111). On admission, Mr X was observed to be lethargic, disorientated and suffering a greater degree of pain than on previous admissions. He had lost weight and admitted to having lost his appetite. The nurse relating the case stated that (p 112):
it was apparent to me that Mr X’s disease process had insidiously created a decline in his overall wellbeing, to a point where it had now affected his quality of life.
On Friday morning, upon consultation with the ward’s resident medical officer, it was stated that Mr X ‘had now reached the terminal stage of his illness’ and that, apart from keeping him comfortable, nothing more could be done for him, medically speaking. On Friday evening, Mr X’s deteriorating condition was discussed with his relatives. It was reported that (p 112):
His relatives were distressed over the deterioration they had observed over the past few weeks in Mr X’s condition and wellbeing. At this time they emphatically expressed their wish that should Mr X arrest while in hospital, they in no way wanted an emergency procedure of resuscitation performed on him, and wished for him to be allowed to die peacefully with a degree of dignity assured.
Later that same evening, Mr X himself requested (via the hospital chaplain) that ‘should he die that evening he had no wish to be actively resuscitated and would prefer to die peacefully’ (p 113).
Mr X’s condition continued to deteriorate. On Saturday morning, the nurse in charge called the covering resident medical officer to examine Mr X medically so that it could be formally established that Mr X ‘would not be for resuscitation’ in the event of his suffering a cardiac arrest. The Social Development Committee (p 113) further reports:
The doctor examined Mr X, and agreed that he should not be for cardiopulmonary resuscitation. However, he also stated that he could not instigate that decision until Monday morning, until he had consulted the Registrar and Consultants of the unit, thereby allowing his decision to be reached as a team decision. On this note, Mr X was still for resuscitation should he arrest, in spite of his and his relatives’ wish to allow him to die with peace and dignity.
Over the next 24-hours, Mr X’s condition declined even further, and at 5 pm on Sunday, in the presence of his relatives, he suffered a cardiac arrest. As the covering resident medical officer had requested that Mr X should still be resuscitated — at least until the matter could be discussed with the unit team — an immediate resuscitation code was called. Full resuscitation procedures were instigated and continued for approximately 20 minutes. No positive outcome was achieved, however, and Mr X was declared clinically dead. Understandably, Mr X’s relatives were very distraught about the incident and ‘even more so’, as the report goes on to quote, ‘about the fact that Mr X had been resuscitated both against his and their wishes’ (p 113).
The issues raised by these and other case scenarios can be broadly categorised under three general headings:
1. problems concerning DNR decision-making criteria, guidelines and procedures
2. problems concerning the documentation and communication of DNR directives
3. problems concerning the implementation of DNR directives.

P roblems concerning DNR decision-making criteria, guidelines and procedures

Criteria and guidelines used

Despite the existence of DNR policies and guidelines, different doctors and nurses may nevertheless appeal to different criteria (to be distinguished here from procedures) for making DNR/CPR decisions. For example, some doctors and nurses might appeal to end-of-life criteria (to be discussed later in this chapter), while others might appeal to sanctity-of-life criteria when making DNR/CPR decisions (discussed in the previous chapters on abortion and euthanasia). Although DNR/CPR 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 cardiopulmonary resuscitation 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, 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 DNR/NFR decisions and practice.
Another troubling practice is that of hospital staff deeming patients to be 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, Sidhu et al’s (2007) study 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’ (p 73). In other words, 66% of respondent hospitals left open the possibility of patients being deemed NFR 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.
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