Advance Care Planning for the end of life: an overview
Advance Care Planning for the end of life: an overview
Abstract and Keywords
This chapter first provides brief introductions and an outline of development of ACP. Then, it surveys the evidence base, providing a selective summary of ACP research. Next, it presents a discussion of the social and cultural challenges with ACP and how ACP facilitates a process of shared decision making. It also cites practice and policy developments to promote ACP in England. ACP developed in the latter half of the twentieth century alongside concerns about the risks of futile and inappropriate use of life prolonging medical technologies. A new perspective has begun to emerge in which emphasis is placed less on leaving an instruction to guide medical care and more on the potential for ACP discussions to help patients and their families prepare for death, review their immediate goals and hopes for the future, and strengthen their relationships.
The urgent need for initiatives aimed at addressing barriers to improving the quality of palliative and end of life care was highlighted by a report released in the UK during 2007 which analysed complaints to the Healthcare Commission: the NHS watchdog in England (1). The report analysed 16000 complaints made between July 2004 and July 2006, finding that more than half (54%) of complaints from bereaved family members about hospital treatment were about end of life care and, of these, most centred on failures perceived in relation to communication and degree of ‘preparedness’ for the death. Over the last decade or so, research evidence suggests a similar picture has emerged from many other developed countries. Among the largest and most frequently cited is the US SUPPORT study, which found that among a large sample of patients recognized as at high risk of dying, 50% had a ‘do not attempt resuscitation’ order written in the last two days of life and more than one third spent their last days in ICU (2).
In the not too distant past, serious illness led to death quite quickly. Dying was encapsulated into a few weeks or days and there were fairly clear norms of social and clinical behaviour surrounding the person who was dying and their companions. Now, with the rise of what has been called the ‘indistinct zone’ (3) of chronic illness and the concentration of death in older age, life has fundamentally changed: we tend to live for a long time with illnesses that are eventually fatal and die perhaps when no one expects us to. New questions have emerged to which we have not yet found the answers to either personally, socially, or institutionally:
The first question is about prognostication and timing: how do we know when our focus should shift from trying to prolong life to trying to provide comfort as life comes to an end and, when a prognosis is given, whom does this benefit?
2 Who decides?
The second turns around decision making: what principles should guide the decisions that may be required at the bedside of a dying person, whose dying risks being prolonged by the inappropriate use of medical technology or who needs rapid relief from pain?
3 Who acts?
The third question relates to authority and responsibility: who should take the lead in managing end of life care? The clinician? The patient? The patient's family?
4 Whose values?
The last question relates to the interpretation of concepts and values: what does it mean to die with dignity? How can we achieve this when we know that this term means so many different things to different people?
Advance Care Planning (ACP), usually defined as a process of discussion between an individual, their family, and care providers, has been widely promoted as one means of addressing these multiple questions and first appeared as an umbrella term describing a range of interventions and associated outcomes in the literature in the early 1990s (4). ACP has been promoted as a means of setting on record the views, values, and specific treatment choices of those living with serious, progressive conditions that are likely to cause incapacity or loss of the ability to communicate wishes to others in the future. The goals of Advance Care Planning have been identified as:
◆ Ensuring that clinical care is in keeping with the patient's informed decisions and preferences when the patient has become incapable of decision making; improving the health care decision making process by facilitating shared decision making
1 The setting out of general values and views about care and treatment. In England, these are known as ‘statements of wishes and preferences’, and are promoted as a useful record to guide future care (7).
2 An instructional directive: often known as a ‘living will’ or advance directive (AD), which sets on record positive or negative views about specific life prolonging treatments such as cardiopulmonary resuscitation (CPR) or ventilation, in defined circumstances. Those that set out an advance refusal, now have legal force in most countries when assessed as valid and applicable. In England, these are called ‘advance decisions to refuse treatment’ (ADRTs) under the provisions of the Mental Capacity Act (8). Both generic and disease specific directives are described in the literature ( 9).
3 The nomination of a proxy: often known as an ‘attorney’, who then has the authority to represent the patient once they have lost capacity in relation to decisions surrounding their medical treatment. In England, the introduction of provisions for ‘lasting powers of attorney’ under the Mental Capacity Act of 2005 (8) is one example.
Various initiatives in law, policy, and healthcare systems are actively and strongly promoting practice based as well as strategic initiatives to support implementation of ACP, although the exact form of implementation and the terms used differs across states and countries (10).
The rising popularity of ACP arguably reflects trends in late modern palliative care towards emphasizing the value of ‘open awareness’ around death and dying, and a wider societal concern with the promotion of personal autonomy (11), as well as the containment of health care costs and amelioration of the consequences of what many perceive as the ‘run away train’ of medical technology. The cultural stance and response of the USA to these factors has arguably been a major influence across the Western world. The concept of a ‘living will’ was initially proposed in 1969 in the USA (8), and was subsequently embedded in US legislation which followed two high profile cases of the 1970s and 80s (see Chapter 17). These involved the withdrawal of life support from young women left in persistent vegetative states—Karen Quinlan, was 21 when she had a cardiac arrest related to substance abuse; Nancy Cruzan was 32 when she was involved in a near fatal car accident. In Cruzan's case, it was seven years before her parents were successful in persuading the courts to authorize the removal of the artificial feeding keeping her alive (12). The passage of the Patient Self-Determination Act in the USA during the 1990s—hot on the heels of the conclusion to the Cruzan case—made it mandatory for all patients admitted to a health care institution or enrolled with a health care agency to be given written information about their rights on decision making and the right to prepare an advance statement relating to their future medical care (13). As a result of legislative processes in the US, the emphasis there has been until recently on the completion of instructional directives or the nomination of proxies using the principle of ‘precedent’ or prospective autonomy (14,15). In the last ten years, this emphasis has begun to change as evidence emerges of what is important to patients and families. A new model has emerged in which emphasis is placed on the potential for ACP discussions to help patients and their families prepare for death, review their immediate goals and hopes for the future and strengthen their relationships (16) (see Chapter 17). The move towards a ‘self care’ model of Advance Care Planning for example—‘Lets talk’ (17) (appendix 1) additionally provides a means (p.19) for individuals to access information and on-line tools to make their own decisions about future medical care.
Developments similar to those occurring in the USA have taken place in Canada, Australia, and Northern Europe since 1990, often in association with high profile cases. However, it is probably true to say that it is only in the last few years that there has been any serious debate among practitioners, researchers, and policy makers about whether and how ACP should be implemented, and what are its risks and benefits in clinical care. The frequency of use of ACP records varies markedly across the world, with very low take up reported in most countries except some areas in North America (5). For example, one study in New South Wales, Australia, has shown that less than one per cent of people have a record in their notes of any discussion about Advance Care Planning (18), despite initiatives in other parts of the country (see Chapters 20 and 21). However, there appears to be a groundswell of opinion in favour of the idea of ACP and some evidence of efforts to engage at a practice level with ACP discussions, even if these are not formally recorded. In the UK, NHS initiatives such as the Preferred Priorities of Care (19), Gold Standards Framework (20), and Liverpool Care Pathway for the Dying Patient (21) may all be seen as challenging organizations and practitioners to engage with users of services about aspects of ACP, particularly as they relate to place of care. The potential for ACP to contribute to better end of life care outcomes for patients has been significantly emphasized in the End of Life Strategy for England (22) and the associated national review of NHS services (23).
Outcomes of ACP: the evidence base
Several studies have identified benefits which result from ACP, although there is conflicting evidence. An association between having a advance directive and dying outside the acute hospital has been observed, although there is little understanding of how the directive or the processes of Advance Care Planning leading to its completion may have contributed to decisions around place of care (24,25,26). Perhaps, as a logical sequel of the expectation that having an AD may result in less ‘high tech’ and hospital inpatient care, there have been some hotly contested claims that ACP could result in reduced health care costs (27). For example, Fries et al. state ‘… advance directives, such as a living will or durable power of attorney, that emphasize humane and dignified care at the end of life can reduce costs as well as ensure desired care’ (28).
There is some evidence that ACP may increase individuals' autonomy in terms of sense of control (29,30). Some interventions, particularly where they go beyond the objective of completing an AD form and embrace process issues, appear to have enabled greater congruence between treatment at end of life and expressed preferences (23,30,31,32). The most well known of these is the ‘Respecting your Choices’ programme (33) implemented by Bernard Hammes and his team in Wisconsin, USA and now taken up in several other states and countries, including Australia and Canada (see for example www.polst.org). This involves a multi faceted educational programme with skilled facilitators whose job it is to help patients document a range of goals, wishes, and plans for the future. It has the following objectives:
◆ To help people understand what options and decisions might be faced, help them reflect on those decisions, work through the issues and then both make decisions and communicate these decisions to each other and ultimately to the health professionals
◆ To enable systems to track and make use of documents and preferences
◆ To make sure retrieval from the medical record was possible
◆ To influence care so that advance directives would be carefully considered in decision making (31).
(p.20) A similar programme called ‘Let me Decide’ implemented in Canada in nursing homes and hospitals, has shown similar results to those emanating from the latter programme (32). A further example is the ‘Choices’ intervention (Comprehensive Home Based Options for Informed Consent for End Stage Services) which, for 208 patients with advanced chronic illness, has been shown to result in more time spent at home, more palliative care, and less time in hospitals (34). In the specialist intensive care literature similar results have been found. Interventions involving intensive communications training and a systems focus towards change were found to increase options for palliative care as opposed to aggressive intensive support (for a review, see reference 35, p89).
Where the focus has been mainly on completion of an AD form, with little supplemental work to change attitudes or influence the quality of communication, the evidence has been much less positive (35,36). In the most famous of the many studies, SUPPORT, it was found that an intervention based around the completion of AD forms which were then made available to patient's physicians, had no impact on the style of communication between doctor and patient, on the incidence or timing of DNAR orders, or on the knowledge that doctors reported they had about patients' preferences (2). It has been recognized latterly that an important limitation of traditional ADs is that they tend to relate to scenarios which are either too vague (if I am close to death) or too specific (if I am in a persistent vegetative state) to be useful (37).
ACP facilitating a process of shared decision making
In the last few years, a number of studies using qualitative methods to interview patients and their caregivers have been published which shed light on the particular contribution Advance Care Planning can make to the quality of life of patients living with an illness that will eventually be fatal. These draw attention to the importance of the process rather than outcomes of ACP, illustrating how it may offer a vehicle for communication and choice about end of life care through facilitating mutual understanding between parties involved and enhancing openness and discussion of concerns. Among these, is one study from Canada (38) reporting interviews with patients with renal failure who were either about to, or had recently commenced, dialysis. The patients reported that they found that the ACP discussion could be an important opportunity to articulate their hopes for the future and to reflect on how to make sense of, and make plans for the impact of, their illness on their daily life, and on their family:
Hope was central to the process of advance care planning for these patients in that their hopes helped to determine their future goals of care and provided insight into the perceived benefits of facilitated advance care planning and their willingness to engage in end of life discussions. Patients' hopes, therefore, became the cornerstone of facilitated advance care planning by providing a focus for end of life discussions (38, p887).
In one of our own studies, which examined the views of a diverse sample of 32 older people (39), advance statements were seen primarily in terms of the potential they have for providing a guide for family members, especially where a person may have only one or two surviving relatives. A particular issue was how advance statements might help to ensure that the ‘burden’ of decision making placed upon adult children was lessened. For example, during discussion of artificial feeding in one group, a participant spontaneously referred to the potential for a ‘living will’ to protect his family from ‘… the hassle of trying to make minds up’ (39). In this study, the older people who took part had moral concerns about their family obligations which ranged far beyond any narrow concern with autonomy (40). Similar findings were found by Singer et al. (41), in a study of the views of 48 patients receiving renal dialysis in Canada who had been given the (p.21) opportunity to complete an advance statement. Early findings from another of our studies (42) that sought the views and experiences of people with lung cancer about discussing future care reveal that concerns for family are more important than individual needs for future care.
Philosophical, social, and cultural challenges
The fundamental constraint on advance directives is that they derive their ethical and legal justifications from the principle of individual autonomy. Advance directives exist primarily to protect patients' rights to refuse medical interventions at the end of life. Many patients do not seek this protection or define their right to influence treatment decisions differently from advance directives. The current autonomy based procedures and policies shaping end of life decision making do not match the needs of many patients and their families, including many older adults and those from different racial and cultural backgrounds (43, p872)
The examples of qualitative research briefly reviewed above suggest that the traditional autonomy focused framework of Advance Care Planning and emphasis on the completion of instructional directives about specific treatments is out of step with the perspectives and needs of patients, and suggests that new, broader initiatives that start by trying to discover the personal goals and values of patients may be more helpful. Further evidence challenging the traditional focus of ACP on autonomy comes from a range of studies among minority ethnic communities which show that concepts of ‘truth telling’ and ‘autonomy’ vary culturally, both between countries and between cultural groups living in different countries. For example, in work with older Chinese people who had been resident for many years in England, it was found that by far a bigger concern was the maintenance of good spirits in the face of life threatening illness. Entry to a hospice, classically an arena where one would expect there to be opportunities to engage with ACP, was regarded negatively because it contradicted assumptions about the right way to die (44). Such perceptions are not limited to non westerners, but an integral part of some European cultures. For example, Dr Nunez Olarte, writing in 2000 about his personal views of the applicability of Advance Care Planning in Spain, observed that:
Autonomy does not mean assaulting patients with truth, or assaulting them with informed consent, or assaulting them with advance directives (45, p50)
Even in the USA there are differing opinions about whether people should be ‘forced’ to have discussions about their future medical care (2,46) recognizing that some people may choose to discuss their preferences with their family or others, rather than their physician (47).
As well as these cultural challenges to the traditional bases of ACP, another problem relates to the assumption that patient's views about treatment or position on decision making styles will be reasonably stable over time. However, it has been observed that at least one third of people change their minds over a comparatively short timescale (48). This may be due to the phenomenon of ‘response shift’ in which patients facing rapidly changing health care states ‘downsize’ their perceptions of what is a reasonable quality of life and may change their views and perspectives on medical decision making quite fundamentally (49). Furthermore, some evidence is beginning to emerge from research in the UK (42,50), which suggests that, for some very ill patients the recollection of the disclosure of ‘bad news’ so overshadows them subsequently, that they find it exceedingly difficult to engage with ACP, preferring instead to ‘carry on as normal’, live in the present, and ‘hope for the best’.
The frailty of extreme old age, as well as critical life experiences shaped by war, may induce a similar response among older adults, and explain findings which suggest that some older people (p.22) are resistant to discussing the future and prefer to ‘take one day at a time’ or delegate decision making to others (51).
Two case studies
One woman, who had been married for 60 years, described how she was the main carer for her husband, who was very ill. She said that she was devoted to her husband and hoped, quite selflessly, that she would be the one to be left on her own eventually. Nevertheless, she had a dread of ultimately being on her own—being agoraphobic added to her concerns—and she didn't want to inconvenience her family. She said that they were both dreading anything happening to either of them and were ‘just living a day at a time’. She prayed for ideal solution—that they would die together or within a very short time of each other (52).
Andy, a 73 year old man with lung cancer and an abdominal aneurysm, talked about living ‘one day at a time’ and not thinking about the future. He'd been told his prognosis was only six to twelve months, but he wanted to get on and live as normal a life as possible. His wife, Amy, was quiet when Andy spoke about living for ‘now’. Several times Amy said she wanted to know more about what would be available when the time came, but Andy said he didn't want to talk about that ( 42).
Such findings are often further compounded by the fears induced by a realistic perception that there are few services or resources which older people can access to help them as they face the last period of their lives: this perspective emerges in work with older members of the public about end of life care (52). In addition to age, a person's gender or family responsibilities may also influence decisions about whether to engage in ACP. It has been suggested that ACP is a social as well as a medically focused undertaking (53).
A final challenge relates to the contexts in which attempts may be made to introduce Advance Care Planning. This has been clearly shown in the UK, where efforts to introduce initiatives to support the Mental Capacity Act (7), which for the first time makes legal provision for the completion of advance decisions to refuse treatment, were widely reported in the media as a ‘back door to euthanasia’ (54), probably because of parallel debates about the legalisation of assisted dying that were taking place at the same time. This seems to have affected the way in which members of the public in England perceive ACP, with some worrying that the completion of advance directives may lead to medical actions which are akin to ‘pulling the plug’ or out of step with the ‘real intent’ of the person in question (52).
Changing practice and policy
Where does this leave us as we try to make sense of what is the right thing in clinical practice? How is it possible, within the many constraints imposed by our health care systems, to attend to the many different perspectives patients and their families have, and be mindful of the rich complexity of cultural and ethnic heritages that underpin these?
Realistic information, sensitively provided, helps patients and their families to maintain a feeling of normality and allows them to develop new coping strategies. Such discussions engender hope. Such hope is not for a cure but for understanding the process of dying and for reassurance that support will be given during a variety of eventualities (55, p869).
There is a distinct gap in the literature about how best to raise, conduct, and record Advance Care Planning discussions, what questions should be employed to guide such discussions, or how they should be recorded. There is increasing evidence from the USA of the success or failure of some initiatives (see Chapter 18). There has also been uncertainty about the timing of ACP discussions, or by whom they should be led. However, a systematic review which has resulted in (p.23) valuable guidelines for practice (5) makes it clear that any Advance Care Planning intervention needs to take a broader approach than merely trying to increase the completion of advance directives. Approaches need to be developed in which primacy is given to the patient's and, where they have one, their family's point of view. This will involve a sensitive assessment of whether or not they are ready to engage in thinking about the future, and then helping them to talk and communicate with each other, as well as with their professional care givers. This might involve the articulation of fears about death and dying, but this is certainly not automatic, neither should this be forced. Talking about what might seem more mundane issues, but which may have a critical impact on daily life, might be more important for some. Equally, it is likely that only a minority of people will have strong and specific views about particular medical treatments. However, with help, most will be able to set out a number of areas or goals of importance in their lives; or will have views about how their future care should be organized as their health deteriorates to best fit in with their family life and preserve their sense of identity, dignity, and control. It will be important to acknowledge uncertainty, since no amount of discussion or horizon scanning can predict how things will unfold, and it may add to distress to try to do this (56). It will also be important to acknowledge that patients and their families may not perceive many ‘real’ choices, and that indeed the health services available may not be able to deliver reliably some things that are ‘chosen’, such as death at home for example (57).
There may be concerns about the time and resources required from health and social care professionals and their needs for training (10), if ACP as we have sketched out here, is to be effectively introduced into every day practice. Any initiatives that are developed must take account of these and work with professionals to build on their existing practice, rather than expecting them to engage in anything they may see as fundamentally new and alien.
Preliminary work in the UK in relation to developing an aide memoire for nurses to use with patients with lung cancer, drawing inspiration from studies by Linda Briggs in the US (58), suggests that it is possible to help clinicians develop their practice such that they feel more comfortable and confident about opening up an ACP discussion with seriously ill patients, but much more work is required to further develop this (59). Many of the principles involved are ones which will be familiar to those from specialist palliative care: skills of listening and reflecting, of summarizing, and of unconditional regard for the point of view of the patient and their family. Work under the auspices of the National End of Life Care Programme (9) has identified a number of possible triggers to help clinicians to assess whether the timing of an ACP discussion is appropriate. Box 2.1 provides some pointers for good practice in Advance Care Planning.
Developing approaches to ACP that are feasible to use in the busy pressurized world of practice, that are sensitive to the needs, fears, and varied perspectives of patients and their families, and which actually make a difference in terms of providing better end of life care depends on much more than the preparation and training of health care professionals. It requires a sea change in attitudes to discussing and anticipating end of life care among the public, and a commitment among politicians and policy makers to developing systems of health and social care so that those who face the end of life can trust that adequate help and support will be provided to them and their families. In particular, the persistent inequalities which mean that people with palliative care needs have sharply different opportunities to engage in preparation and planning for death need to be addressed. It has been recognized that systems of care provision that are poorly adapted to the realities of demographic change mean that many older people living in Europe with complex care needs are simply just not ‘in the loop’ of assessment, delivery of health and social care, and proactive planning for long term and end of life care (60).
Advance Care Planning has moved from being a process which aims to elicit specific instructions about medical treatment at the end of life, to being recognized as an opportunity to help patients and their families to prepare, in their own terms, for the changes wrought by serious progressive illness and work with them to plan nursing, social, and medical care so that it better fits their needs, hopes, and aspirations. In thinking about the use of Advance Care Planning, we would do well to remember that being and becoming ill engenders a paradox in which it is likely that we both welcome an opportunity to ‘take control’ and reject it, because of feelings of fear and uncertainty, and a basic human need to feel safe and cared for during illness (61). Making an Advance Care Plan is not something that we may all wish or feel able to do. As we face illness, what were once clear preferences may become blurred and uncertain, we may want others to make decisions on our behalf, and we may not be able to talk easily about the end. It is also difficult for clinicians to raise Advance Care Planning conversations and to know how to manage them. Many feel similar discomforts and anxieties to their patients, with some having made attempts to initiate a discussion that was not welcomed, resulting in a breakdown of trust within the patient-clinician relationship. Moreover, it is clear that raising awareness of Advance Care Planning and associated issues before illness is necessary; which means grasping the nettle of developing approaches to public education about a sensitive topic for use in schools and in the wider community.
Finally, in order for Advance Care Planning to be successful, it needs to be embedded in systems of care designed to provide comprehensive support to those facing the end of life, in recognition that serious illness and dying are worthy of the same care and attention that we give to birth, acute illness, and injury.
This chapter is based on the text of a plenary lecture delivered in Budapest to the European Association of Palliative Care. We are grateful to the Association for their invitation to prepare the latter, and to Macmillan Cancer Support for the funding of Gillian Horne's PhD study.
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