Introduction to truth telling and consent
At the core of truth telling is a fairly new cultural value (Xue et al., 2011) that entails a revised role for ‘healers’ in society as well as care recipients (Cassell, 1985). Whereas in earlier times it was deemed helpful to shield people from the harsh reality of their conditions, clinicians practising palliative care in Western medicine today generally understand ‘truth telling’ as a legal and ethical professional responsibility. Persons with illness generally understand ‘truth telling’ as their right to information about their illness. This sea change in cultural values is reflected in the arts. Historically, cultural representations of the therapeutic relationship have emphasized physicians’ dilemmas. For example, the tragic consequences of one-sided, professional honesty (Ibsen, 1984) and well-intentioned reticence (Narayan, 2006). More recently culture increasingly elects to profile individuals’ illness dilemmas (Forster, 2010; Gurnah, 2011; Mankell, 2012).
This chapter focuses on the role of truth telling in the therapeutic relationship and the ways in which communications can maintain hopes and at the same time deliver information sufficient for informed consent. It outlines the evolution of standards for truth telling and consent and then presents practical approaches that can guide truth telling and informed consent. Finally, it concludes by considering these norms and some of their limitations from within a global cultural context.
History of truth telling
Truth telling in contemporary Western medicine has come to refer to the way in which information about the futility of treatment, a person’s impending death, possible clinical pathways to death, and the possible impact of end-of-life decisions along those pathways should be communicated (Deschepper et al., 2008). Each person fears death in his or her own way (Yalom, 2008) and studies show that ‘truth telling’ around diagnosis or prognosis can be particularly difficult to communicate. For example, research shows that ‘cancer’ is a word which has the capacity to effect a blinding emotional reaction (Casarett et al., 2010; Nwankwo and Ezeome, 2011).
Research also suggests that communications which sustain hope along a disease trajectory are particularly effective in maintaining quality of life for individuals suffering from terminal or incurable diseases and their families (Clayton et al., 2008). However, these communications are sometimes difficult for clinicians. For example, some physicians are more comfortable talking about the disease or the technicalities of treatment than healing or choices that involve difficult decisions (Cassell, 1985; Deschepper et al., 2008). Importantly, many physicians and nurses are reluctant to communicate bad news (Gysels et al., 2004).
Approaches to medical truth telling in prognostic and diagnostic discussions differ around the globe. In Lebanon, China, Singapore, and Japan, for example, persons with cancer are often not told their diagnosis or their prognosis, whereas in the United States and United Kingdom, the American Medical Association and General Medical Council advocate truth telling and reject deception (Sokol, 2006). Studies in both these countries show that the gold standard is absolute truth about diagnosis and prognosis. Indeed, studies with families and persons with illness show that people appreciate honesty about their illness (Apatira et al., 2008). Preferred physician behaviours include being realistic, providing an opportunity for asking questions, and acknowledging the person as an individual while discussing the prognosis. However, it is less clear what each participant in the truth-telling interaction means by ‘truth’ and some studies show that preferences for information may change over time Hagerty et al., (2004, 2005).
Hope is commonly equated with the potential for cure. Within the field of palliative care where cure is often a receding theme, hope still retains an important role. Observations in clinical practice suggest that when a future to hope for gets disturbed by difficult news, people move into a more fundamental emotional state in which dependence dominates and trust becomes more than usually essential. This response to disturbed hope underscores how powerful an emotional asset hope is Hagerty et al., (2004, 2005; Eliott and Olver, 2006; Clayton et al., 2008; Kersten et al., 2012). In palliative care, the goal is to find something realistic to hope for and to tailor care towards that goal (Emanuel et al., 2007). For example, if a person says that he or she wants to attend a family life-cycle event, the care plan can focus on treatments which enable them to achieve this.
History of consent
Contemporary understandings of informed consent as a guiding ethical principle and practice within health-care settings have roots in the US and UK courts. Early English common law doctrine ensures that assault (the threat of bodily harm) and battery (the unlawful touching of another individual) are the key measures by which lawful behaviours are ascertained (Murray, 1990). Informed consent cases can be traced back to the early modern period of legal jurisdiction. Most cases present themselves in oppositional terms with the person with illness pitted against the physician, health-care team, and health-care provider. For example, a significant case in English medical law was Slater v Baker and Stapleton in 1767. Surgeons reset a femoral fracture without the person’s consent and without giving sufficient prior warning. Custom dictated that physicians obtain consent to help patients ‘take courage’, and the judge ruled that failure to do so in this case was remiss (O’Shea, 2011).
Legal definitions of informed consent have evolved over the years. In the 1950s and 1960s, US courtroom debates focused on the question of medical judgement and how much a ‘reasonable physician’ might be expected to disclose. The normative assumption was that physicians knew how much to reveal about a medical procedure to patients and that professional bodies would provide guidelines. In the 1970s, a new formulation of person-orientated standards of care emerged, and the right to self-determined consent was enshrined in law (Bennett, 2000). Physicians were required to reveal as much information as a ‘reasonable person’ would wish to know. Informed consent was not just about protecting persons with illness from unwanted interference with their bodily integrity, it was also about enabling them to make informed choices about care (Appelbaum, et al., 1987).
The law of consent is now generally accepted as ‘the vehicle by which the respect for personal autonomy’ (MacLean, 1988) is translated into law. As a modern ethical formulation, informed consent can be seen as an attempt to codify and institutionalize a basic human right to self-determination of what happens to one’s body (Bennett, 2000; Monagle, 1998). It has been argued that this is in part Western society’s attempt to respond to some of the human rights violations which have occurred within medical practice and research. However, the relationship between consent and autonomy is not always as clear-cut as this implies. Autonomy can mean different things to different people in different contexts. For example, in geriatric palliative care autonomy for a person with illness may mean dignity in death. A person’s definition of dignity may be strongly influenced by cultural or spiritual factors. For one person dignity in death may mean living for as long as possible and trying every curative treatment available (Johnson et al., 2005), to another it may mean relief from pain and suffering and no invasive end-of-life treatment (Deshpande et al., 2005).
Legal definitions of consent do not prescribe the type of interaction which should take place between a person, physician, health-care team, and families in order to ensure that consent is informed or articulate how it should be done. In fear of prosecution, many health-care providers have adopted a rigidly legalistic interpretation of informed consent, standardizing documentation and institutional review to deliver legal requirements. The danger of this approach is that communication about consent can become an ‘empty ritual in which persons with illness are presented with complex information that they cannot readily understand and that has little impact on their decision making’ (Grisso, 1998). Indeed, the legalistic approach seems a particularly poor match with the goals of palliative care where the person and his or her family is the ‘unit of care’ (McClement et al., 2007) within a complex and fluid system of health-care provision (Bowman et al., 2011).
Research has shown that single utilization of forms alone can result in limited person understanding of what they are consenting to (Tulksy, 2005). An alternative approach is the process model described by Appelbaum et al. (1987) where ‘informed consent (is integrated) into the physician-person relationship as a facet of all stages of medical decision-making’. Constant communication around consent builds trust and services everyday norms of non-deception and non-coercion. Furthermore, persons and physicians build relationships of trust which can enable individuals to exercise consent as ‘a waiver (to) legitimate actions that (taken out of context) might otherwise be seen as breaches of rights and obligations towards them’ (O’Neill, 2002). Take, for example, a person with illness who decides he or she wishes to die at home. Nursing staff know that the family carers will not be able to turn the person and that they may develop pressure ulcers. The health-care team holds a family meeting which includes the patient to discuss the benefits and barriers to a good death at home. The group decides that it is best for the individual to go home (Eisenberger and Zeleznik, 2004). This example suggests that there are diverse interpretations of autonomy as well as arguments for a non-autonomy rationale when seeking consent. It also suggests that continuing and sustained communication between professionals and the person with illness/family as ‘unit of care’ is essential for effective and considered consent (Appelbaum, 1987, Heinemann, et al. 2002).
A psychological perspective on consent
Any experience of significant illness is identity changing (Miller, 2010; Bowman et al., 2011). The shift from health to illness and self-confidence to constant watchfulness can be transformative, particularly for persons with illness living through long disease trajectories. Several conceptual approaches have been developed to facilitate understanding of these identity changes. For example, the concept of ‘pre-morbid personality’ notes that acknowledging one’s illness entails ‘[entering] another way of being’. It notes that illness can impair or change a person’s ‘standard currency’ (Bowman et al., 2011).
Taking in frame-altering news: a cognitively refractory state
Other conceptual models have facilitated predictions about how an emotional context will vary over time as a person processes illness-related losses (Emanuel et al., 2007). A first encounter with frame-altering news often leaves a person ‘numb’ and unable to absorb information. A key lesson from these models is that the decision-making behaviour of, say, a woman who gives consent for aggressive radiation treatment of breast cancer is unlikely to mirror the decision-making behaviour of the same woman who gives consent for transfer to hospice (Bowman et al., 2011). A different dynamic of contradictory feelings, experiences, family and health-care personnel, and motivations is likely to be in play at each stage of the illness (Covinsky, 1994, Mezey, 1997). Although in purely legal terms these identity changes don’t matter (unless they affect the person’s capacity to give consent), in practice they will affect the choices the individual makes (Bowman et al., 2011).
Adjusting to a new reality: an emotional and cognitive experimentation phase/creative adaptation
Recent scholarship has seen the emergence of a number of concepts and interventions relevant to the way individuals adjust to end-of-life losses at different stages of their illness journey (Munn et al., 2008). These include ‘preparative waiting’ around diagnosis (Giske, 2007); life review and emotional disclosure for persons with less than 6 months to live (Steinhauser et al., 2009); dignity therapy for terminally ill persons (McClement et al., 2007); and stages of change modelling for social workers preparing persons for end-of-life care planning and decision-making (Rizzo et al., 2010). Knight and Emanuel’s reintegration model (Knight and Emanuel, 2007) posits the idea that adjustment to losses are linked to a broader biopsychosocial context than hitherto acknowledged. As a person adjusts to illness, several cycles occur: comprehension (i.e. recognition of what has occurred), creative adaptation (i.e. experimentation with alternatives for living in the new circumstance), and reintegration (i.e. consolidation of a revised way of being). For example, take two individuals who have each had a leg amputated because of serious illness. Person one grieves for the loss of their mobility but seeks outside help to cope, and thinks of ways to continue to be mobile. Person two on the other hand does not accept the loss of his/her leg and does not adapt to the change. He/she refuses to leave his/her bed and dislikes having bed sheets changed because the amputation can be seen. This comparison illustrates how the reintegration model can help to ‘place’ the person in the trajectory of adjustment, and possibly thence guide approaches to foster optimal adjustment and functioning.
Reaching equilibrium; a mature state capable of durable decisions
Loss of function, body image, relationships, control, independence, dignity, and anxiety about death can occur at any time (Yalom, 2008). The literature on loss and grief tells us that loss is the condition of being deprived of something or someone (Kübler-Ross, 1969, Worden, 1991). Loss may be anticipated, real or perceived, primary or secondary. Grief is a personal and normal response to loss. It can be physical, (e.g. physiological capabilities, functions), psychological (e.g. emotions, cognitions, behaviours), social (e.g. role in relationships), or spiritual (beliefs, existential experiences). Mostly it is a complex combination of all these. The intensity of the response will vary according to the meaning of the loss to the person experiencing it (Yalom, 2008). Since all persons with illness and their families experience multiple losses associated with those illnesses, grieving can form a significant part of the end-of-life experience. Competence in helping those in care to adjust to losses is therefore a high priority for health-care professionals.
Working in clinical settings with different stages of adjustment
To be effective in end-of-life care, health-care teams must be able to recognize and anticipate grief (Kübler-Ross, 1969; Worden, 1991). Team members need to recognize individuals stuck in states of incomplete adjustment. Successful transitioning from one state to another takes time, reflection, regular communication, and an environment that offers hopeful alternatives to the state that has been lost. Team members should aim to anticipate grief reactions, providing basic supportive care to persons with illness and families and referring individuals to bereavement experts quickly when grief reactions become complicated. Observation in clinical practice suggests that active listening and unconditional support whilst acknowledging the unwanted reality can offer the best approaches. It also suggests that sources of help can feel like two-edged swords to persons who are having a hard time accepting the situation they are in. Worden and Rando advocate a process-orientated understanding of how people resolve grief (Worden, 1991; Rando, 1993). Their model offers guidance for identifying where individuals may be having difficulty in their trajectories of mourning.
Types of shared decision-making
In the last decade, as the therapeutic relationship has become more of a partnership (Joosten et al., 2008), shared decision-making has become a core imperative of person-centred care (Stacey et al., 2010). Conceptualizations of the nature of this partnership have identified an important common hallmark: ‘that persons and providers have different but equally valuable perspectives and roles in the medical encounter’ (Makoul and Clayman, 2006) when it comes to making decisions about treatment. Key questions for effective practice include how best to communicate these perspectives (Mok et al., 2010), which decision aids to use (Feldman-Stewart et al., 2006), who takes the lead and when, and what constitutes ‘decision quality’ (Joseph-Williams et al., 2010).
Current models of shared decision-making typically include the person with illness and one other health-care professional (Stacey et al., 2010) and can be plotted along a spectrum with paternalism at one end (i.e. physicians making the decisions) and informed choice at the other (i.e. where individuals make the decisions) (Makoul and Clayman, 2006). Some researchers suggest competencies for both clinician and persons with illness, while others argue that clinicians have the responsibility to elicit or respond to the views of the person with illness (Chwening et al., 2012). Self-help books urge individuals to proactively ask questions about diagnosis and prognosis (Lynn et al., 2011). At the same time, the evidence points to large variations in decision-making role preferences among and between persons with different disease trajectories (Tariman et al., 2010). A mismatch often exists between persons’ stated preferences for and actually chosen roles. For example, while the majority of persons with cancer interviewed by Gaston and Mitchell expressed a wish for full information, only two-thirds wished to participate in active decision-making (Gaston and Mitchell, 2005). The nature of the decision and the stage of the therapeutic relationship can also influence a person’s decision-making role preference (Chewning, 2012). All of these are important considerations, especially given that involvement in shared decision-making can improve the quality of end of life (Steinhauser et al., 2009).
Interprofessional and family perspectives on shared decision-making
A theory analysis of shared-decision-making models shows that although existing models identify the ways in which health-care professionals can work with persons with illness to achieve shared decisions, few discuss how the decision-making occurs ‘with others involved beyond the person–practitioner dyad (e.g. family members, other professionals)’ (Stacey et al., 2010). The person–practitioner dyad remains paramount in the literature and a core ‘ethical unit’ of shared decision-making.
An exception to this is family caregiving research, also referred to as family systems in nursing research, where there is a growing body of literature showing how the involvement of family in health-care decision-making can strengthen collaboration and trust between families and health-care teams (Anderson, 2000; Rempel, 2006). Family engagement reduces the risk of providing care which persons with illness and families don’t want (Fineberg, 2005) and unnecessary and distressing hospital admissions among older persons (Ahearn, 2010). It can also impact positively on symptom management in non-verbal persons (Mentes et al., 2004), difficult invasive treatment choices (Deshpande et al., 2005), and the initiation of palliative care (Nolan, 2008). Wider dissemination of guidelines for palliative care in dementia, for example, has been linked to a decrease in the prescribing of antibiotics and increases in the use of analgesics with persons who are unable to verbally communicate their wishes and preferences (Volicer and Ganzini, 2003).
How to accomplish truth telling with good outcomes
In the determination to promote and improve communications around person-centred care, there is growing professional interest in matching different communication functions or behaviours to good outcomes (Back et al. 2009). The taxonomy illustrated in Fig. 5.4.1 suggests that six communication functions delivered at six stages along the cancer continuum can improve survival and health-related quality of life.
Epstein and Street suggest that a key task for researchers is to ‘specify what [types of behaviours and interactions] will improve outcomes for a particular person at a given point in time on the continuum’ (Epstein and Street, 2007). This is where many of the protocol-based guides designed for use by health-care professionals can be useful.
A stepwise guide
Stepwise protocols, for example, can help health-care teams to approach truth telling by structuring goals of care discussions with persons and their families. Protocols are essentially guidelines which can be adapted to local context and tailored for each individual transaction when required. SPIKES, the stepwise protocol recommended in the Education for Physicians in End-of-Life Care (EPEC) project and widely used in other countries (Swaminath, 2008), is based on Buckman’s protocol for communicating bad news (Buckman, 1992). SPIKES is a tool which respects the autonomy of the person and enables the clinician to determine how much ‘truth’ or information the individual wants to know and how he or she wants to receive it. Fig. 5.4.2 illustrates how a six-step SPIKES approach might be adapted to help the clinician determine the appropriate presentation of information for a person who has received a diagnosis of cancer and wants to talk about prognosis. Research suggests that older persons in particular expect physicians to initiate discussions around prognosis and so do many members of health-care teams (Adelman et al., 2000; Gutierrez, 2012).
Although stepwise approaches are useful tools when it comes to structuring sensitive communications and linking practice to legal frameworks, it is important to remember that to be successful they need to reflect the values, practices, and assumptions of the setting they are used within. For example, what happens when the prescribed norm is not the cultural norm for the person and family in question? The one-to-one communication model that SPIKES represents may not be an appropriate approach for a person who has never previously accessed health care, or who is non-verbal. It may be not applicable in cultural settings where families have traditionally shielded the person from prognosis (Chan, 2011). Furthermore, research shows that effective information sharing in end-of-life care depends on continuous ongoing communications that take into account a person’s hope, despair, and regret.
How to accomplish informed consent
Informed consent is shorthand for two distinct duties in Westernized medicine. Firstly, the clinician’s duty to obtain consent before treatment, and secondly the duty to ensure that the person has been properly informed about a treatment’s risks and benefits (MacLean, 2013). A particular issue in end-of-life care is that many individuals are unable to make their own medical decisions and are increasingly being asked to elect proxy/surrogate decision-makers. One study showed that families made approximately 75% of medical decisions for hospitalized persons with life-threatening diseases (Hiltunen et al., 1999).
Advance care planning (ACP) is the process that has come to characterize true informed consent in the United States. A core outcome of ACP in the United States is a completed advance directive. Although advanced directives alone are insufficient to ensure successful ACP, research has shown that programmes of care that include ACP can make a difference to goals of care (Cantor et al., 2003). It is important to emphasize that ACP is a process. Informed consent is never achieved through a single act of communicating (Bowman et al., 2011). In addition, the systemized nature of health care means that as a person becomes sicker they are likely to meet more and more health-care professionals who may not have been privy to earlier consent discussions and who will introduce their own behaviours and attitudes into the consent process.
A stepwise guide
Analysis of the advanced care planning literature suggests five key elements to achieving informed consent. The steps are similar to those recommended for achieving truth telling: introduce the topic; engage in structured discussion; document the preferences of the person with illness; review and update those preferences regularly; and apply the directives when needed. However, research has identified several deficiencies in ACP. Nursing home staff report that persons with illness do not understand the purpose of an advance directive with several thinking the directives appoint powers of attorney over their affairs (Moskop, 2004; Tulksy, 2005; Steiber-Roger, 2006). Other misunderstandings can arise around the scope of statutory document. For example, whether a living will applies if a persona has terminal conditions is in a coma or a persistent vegetative state (Gunter-Hunt, 2002).
Despite these drawbacks, ongoing ACP and discussion can prevent unnecessary admission to hospital and timely use of hospice. Persons with illness without ACPs or directives are more likely to be transferred to hospital for investigations and interventions that provide short-lived benefits (Moskop, 2004; Steiber-Roger, 2006).
Working with persons with illness, families, and team members
Continuous communication and information is essential for families to function and cope within what can be a bewildering health-care context. Most families have the capacity to share feelings of grief, open lines of communication, and eventually engage in collaborative decision-making. However, inconsistencies in information about a condition can fuel conflicts and disagreements between the person with illness and their family, between family members, and between family and health-care team members. Research also suggests that health-care team member attitudes to death and caring for dying persons can also be a significant factor in the provision of long-term care. For example, health-care team members who have completed an advance directive are more comfortable about discussing end-of-life planning with their patients than those who have no advance plan (Horgas et al., 2007; Guthell and Heyman, 2011).
As a life-threatening illness progresses, a person’s family will have an increasingly important role to play, particularly in decisions about goals of care and treatment preferences. Some of the emerging roles for family or kin include emotional support for illness, advocacy for appropriate treatment for the individual, trusted confidantes about health-care issues, and surrogate decision-makers. These are not roles family members or the health-care teams caring for their loved ones are necessarily familiar or comfortable with. For example, research studies suggest that the desire to remain one’s own person without becoming dependent on kin or family (children in particular) is particularly evident among older people growing old in America (Lamb, 2009). Comprehensive end-of-life care therefore requires that health-care teams know how to respond to family concerns and conflicts and how to help families and persons with illness reach informed consent.
Family conferencing is a particular useful and well-evidenced tool that can promote communication around goals of care and ACP between the health-care team, person with illness, and family in a variety of health-care settings. For example, regularly scheduled nurse and clinician family meetings in intensive care units have the potential to maintain family health during chronic and terminal illness and enhance the care of the person with illness (Nelms and Eggenberger, 2010). Family meetings can also allow health-care teams to effectively acknowledge the suffering and vulnerability of families when a loved one is undergoing long-term care and offer families an opportunity for honest sensitive communication with health-care team members.
Alternative tools which have been successfully used in clinical family nursing practice to facilitate discussion around a person’s individual and social network are genograms and ecomaps. Both are graphic portrayals of family structure and cultural, social, and spiritual relationships (Rempel et al., 2007). Wright and Leahey outline how health-care teams can conduct a 15-minute family interview that includes completing a genogram and ecomap (Wright and Leahey, 2009).
Culture is a vital factor for the clinician aiming to deliver person-centred health care. As clinical populations become increasingly diverse there is a growing premium on understanding and respecting cross-cultural difference and thus avoiding cultural stereotyping (Lasch, 2000). Research shows that the cultural factors which influence truth telling and consent around health care are complex. Age, gender, and ethnicity can all combine with spiritual beliefs, traditional family roles, and assumptions about the causes of an illness or stigma associated with treatments (e.g. opioids). Consequently, culture can have a powerful influence on what clinicians and persons with illness are prepared to talk about, how they interpret one another’s communications, and how they and their families make decisions.
Culture and truth telling
As noted at the beginning of this chapter, current ethical debates about truth telling and consent in Western medicine can be traced back to English common law and case law. Countries that share this tradition look to each other’s jurisdictions for examples and precedents (Edwin, 2008). The outcome of several medical legal cases in Australia, Canada, Ghana, South Africa, and India, for example, all illustrate arguments which show that individual autonomy is fundamental to the rule of law and the basis for disclosure to persons with illness (Edwin, 2008). Truth telling is therefore grounded in a shared cultural value—respect for a person’s autonomy and the ‘right to know’ (Xue et al., 2011). One result of this norm, as illustrated by this chapter, is that the research focus of much medical literature around truth telling is on how to divulge sensitive information (Xue et al., 2011) rather than whether to tell the truth.
Despite the links between culture and truth telling, a patient’s desire for truth telling cannot be redacted down to cultural origins: ‘neither cultural origin nor affiliation accurately predicts patient preferences regarding information transfer or decision making’ (Cherny, 2012). Patients in both Western and non-Western cultures will exhibit considerable variation in their preferred style of disclosure of bad news or information. No one model will fit all. Indeed, data suggests that there is substantial heterogeneity of preferences that are not individually predicated by geography, culture, age, race, sex, religion, or educational level (Cherny, 2012).
Cultural approaches to screening bad news as a care function: some examples
National or minority cultures which emphasize family collectivism or familism can generate powerful arguments against the person’s ‘right to know’ and for the family’s right to a predominant role in therapeutic care and decision-making. In China and Asian countries which share similar cultures, philosophies of life and death, and laws and regulations, person autonomy is not a cultural ‘norm’. Despite a legal mandate that physicians should tell the truth about a person’s disease, family beliefs and norms of medical practice mean that ‘truth telling’ is not straightforward. The negative impact of learning that one has cancer, for example, is culturally well understood by many groups (Lasch, 2000; Rozario and DeRienzis, 2008; Xue et al., 2011) where familism is predominant. A cancer diagnosis is devastating for the whole family. The person’s main source of financial and emotional support and care, particularly palliative care, will be their family. As a result many families adopt responsibility for the individual’s therapy, protecting them against ‘maleficence’ (Chan, 2011). In practice this can mean families insisting that the person not be told ‘the truth’ about their disease (Chan, 2011), that particular family members be included or excluded from translation of negative news (Lasch, 2000), and that family caregivers may not seek information about help that they think the family should be able to deliver (Rozario and DeRienzis, 2008).
Clinicians can become more culturally sensitive and more effective in delivering person-centred palliative care. One approach is to purposefully ask patients about their individual preferences and act in accordance with their wishes (Cherny, 2012). Cherny, for example, recommends offering patients a range of options. These include: ‘explain the results to me, explain the results to me with my family members, explain them first to my family and then to me, or tell the family first and let then them decide what I should be told’. The value of this approach is that it avoids cultural stereotyping, ensures authentic patient preferences are obtained, and reduces possible physician/family collusion. Other strategies include consulting with community organizations and community health advocates (Lasch, 2000) or engaging in cross-cultural discussion about truth telling and consent in the international arena (Xue et al., 2011).
Approaches to substandard norms of practice
The rights ethos is now firmly embedded in medical practice as is a culture of quality improvement (<http://www.medqic.org>; <http://www.ihi.org>; <http://www.capc.org>; <http://www.medicaring.org>). There are multiple measures and tools for determining a person’s capacity to consent to treatment (Sturman, 2005), the effectiveness of risk communication and treatment decision-making (Edwards, 2003), the effectiveness of decision-making aids (Feldman-Stewart et al., 2006), and a person’s regrets about decisions (Joseph-Williams et al., 2010). Despite these safeguards, no framework can predict all the factors which may influence treatment decisions and care near the end of life. As Lynn et al. argue ‘in the care of very sick people, the error is not that we never provide good care, it is that we do not always provide good care’ (Lynn, 2008). Research suggests that having the right people on a team which reflects and revises practice can be an effective way to improve palliative care and maintain high standards (Lynn, 2008; Hewison et al., 2009).
In Western medicine today, clinicians understand truth telling as a legal and ethical responsibility. Persons with illness understand truth as their right to be given the information in order to make informed decisions about end-of-life treatments and care.
Studies of person, family clinician, and caregiver experiences show that truth telling is difficult and distressing at all stages of a terminal illness for all involved. Delivering bad news goes against the grain; it challenges social norms and expectations about the role of physicians as healers. Communicated badly, without intimate knowledge of a person and their family’s hopes, expectations, and wishes, ‘truth’ can have a devastating impact on quality of life and care.
In response, a rapidly increasing body of clinical practice guidelines and generic templates for ways to communicate around difficult topics are being created to assist health-care professionals and improve consumer confidence in decision-making. Analysis and development of more complex conceptual and theoretical models of the biopsychosocial experience of terminal illness is enabling verbal and non-verbal communication tools and approaches to be tailored to different person group typologies.
However, it would be dangerous to think that a cultural hiatus has been reached. The global research shows how familism has to be considered alongside autonomy. Recent cases relating to truth telling and consent in the media have been focused on the right to die rather than the right to know, suggesting that this may be the next legally inspired ethical debate to require professional standardization in the decade to come as populations get older.
Ahearn, D.J., Jackson, T.B. and McIlmoyle, J. (2010) Improving end of life care for nursing home residents: an analysis of hospital mortality and readmission rates. Postgraduate Medicine, 86, 131–135.Find this resource:
Anderson, K. (2000). The family health system approach to family systems nursing. Journal of Family Nursing, 6, 103–119.Find this resource:
Appelbaum, P., Lidz, C., and Meisel, A. (1987). Informed Consent: Legal Theory and Clinical Practice. Oxford: Oxford University Press.Find this resource:
Back, A., Arnold, R., and Tulsky, J. (2009). Mastering Communication with Seriously Ill Patients: Balancing Honesty with Empathy and Hope. Cambridge: Cambridge University Press.Find this resource:
Bowman, D., Spicer, J., and Iqbal, R. (2011). Informed Consent: A Primer for Clinical Practice. Cambridge: Cambridge University Press.Find this resource:
Buckman, R. (1992). How to Break Bad News: A Guide for Health Care Professionals. London: Papermac.Find this resource:
Cantor, M. and Pearlman, R. (2003) Advanced Care Planning in Long Term Care Facilities, Journal of American Medical Directors Association, 4, 101–107.Find this resource:
Cassell, E. (1985). The Healer’s Art. Cambridge, MA: MIT Press.Find this resource:
Chan, W.C.H. (2011). Being aware of the prognosis: how does it relate to palliative care patients anxiety and communication difficulty with family members in the Hong Kong Chinese context? Journal of Palliative Medicine, 14(9), 997–1003.Find this resource:
Chewning, B., Bylund, C., Shah, B., et al. (2012). Patient preferences for shared decisions: a systematic review. Patient Education and Counseling, 86, 9–18.Find this resource:
Clayton, J., Hancock, K., Parker, S., et al. (2008). Sustaining hope when communicating with terminally ill persons and their families: a systematic review. Psycho-Oncology, 17, 641–659.Find this resource:
Covinsky, K.E., Goldman, L., Cook, E.F., et al. (1994). The impact of serious illness on patients’ families. Study to understand prognoses and preferences for outcomes and risks of treatment. Journal of the American Medical Association, 272, 1839–1844.Find this resource:
Deschepper, R., Bernheim, J., Vander Stichele, R., et al. (2008). Truth telling at the end of life: a pilot study on the perspectives of patients and professional caregivers. Patient Education and Counseling, 71, 52–56.Find this resource:
Deshpande, O., Carrington Reid, M., and Rao, A. (2005). Attitudes of Asian-Indian Hindus towards end of life care. Journal of the American Geriatrics Society, 53, 131–135.Find this resource:
Eliott, J.A. and Olver, I.N. (2006). Hope and hoping in the talk of dying cancer patients. Social Science & Medicine, 64, 138–149.Find this resource:
Emanuel, L.L., Bennett, K., and Richardson, V.E. (2007). The dying role. Journal of Palliative Medicine, 10(1), 159–168.Find this resource:
Emanuel, L.L., Danis, M., Pearlman, R.A., et al. (1995). Advance care planning as a process: structuring discussions in practice. Journal of the American Geriatrics Society, 43(4), 440–446.Find this resource:
Gaston, C.M. and Mitchell, G. (2005). Information giving and decision-making in patients with advanced cancer: a systematic review. Social Science & Medicine, 61, 2252–2264.Find this resource:
Grisso T. and Appelbaum, P. (1998). Assessing Competence to Consent to Treatment: A Guide for Physicians and Other Health Professionals. Oxford: Oxford University Press.Find this resource:
Gunter-Hunt, G., Mahoney, J. and Sieger, C (2002). A Comparison of State Advance Directive Documents. The Gerontologist. 42(1). 51–60.Find this resource:
Guthell, I.A. and Heyman, J.C. (2011). A social work perspective: attitudes towards end-of-life planning. Social Work in Health Care, 50(10), 763–774.Find this resource:
Gutierrez, K.M. (2012). Prognostic communication of critical care nurses and physicians at end of life. Dimensions of Critical Care Nursing, 31(3), 170–182.Find this resource:
Gysels, M., Richardson, A., and Higginson, I.J. (2004). Communication training for health care professionals who care for patients with cancer: a systematic review of effectiveness. Supportive Care in Cancer, 12, 692–700.Find this resource:
Hagerty, R.G., Butow, P.N., Ellis, P.A., et al. (2004). Cancer patients’ preferences for communication of prognosis in the metastatic setting. Journal of Clinical Oncology, 22, 1721–1730.Find this resource:
Hagerty, R.G., Butow, P.N., Ellis, P.A., et al. (2005). Communicating with realism and hope: incurable cancer patients’ views of the disclosure of prognosis. Journal of Clinical Oncology, 23, 1278–1288.Find this resource:
Heinemann, G. and Zeiss, A. (2002). Team Performance in Health Care: Assessment and Development. New York: Kluwer Academic/Plenum Publishers.Find this resource:
Hiltunen, E.F., Medich, C., Chase, S., Peterson, L., and Forrow, L. (1999). Family decision-making for end of life treatment: the SUPPORT nurse narratives. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. Journal of Clinical Ethics, 10, 126–134.Find this resource:
Johnson, K., Elbert-Avila, K., and Tulksy, J. (2005). The influence of spiritual beliefs and practices on the treatment preferences of African Americans: a review of the literature. Journal of the American Geriatrics Society, 53, 711–719.Find this resource:
Joosten, E.A.G., DeFuentes-Merillas, L., de Weert, G.H., et al. (2008). Systematic review of the effects of shared decision-making on patient satisfaction, treatment adherence and health status. Psychotherapy and Psychosomatics, 77, 219–226.Find this resource:
Kersten, C., Cameron, M.G., and Oldenburg, M.D. (2012). Truth in hope and hope in truth. Journal of Palliative Medicine, 15(1), 128–129.Find this resource:
Knight, S. and Emanuel, L.L. (2007). Process of adjustment to end-of-life losses: a reintegration model. Journal of Palliative Medicine, 10(5), 1190–1198.Find this resource:
Kübler-Ross, E. (1969). On Death and Dying. London: Routledge.Find this resource:
Lamb, S. (2009). Aging and the Indian diaspora: cosmopolitan families in India and abroad. Bloomington: Indiana University Press.Find this resource:
Lasch, K. (2000). Culture, pain and culturally sensitive pain care. Pain Management Nursing, 1(3, Suppl. 1), 16–22.Find this resource:
Lynn, J., Schuster, J., Wilkinson, A., and Simon , L. (2008) Improving Care for End of Life: A Sourcebook for Healthcare Managers and Physicians. Oxford: Oxford University Press.Find this resource:
Lynn, J., Harrold, J., and Schuster, L. (2011). Handbook for Mortals: Guidance for People Facing Serious Illness. Oxford: Oxford University Press.Find this resource:
MacLean, A. (2013). Autonomy, Informed Consent and Medical Law: A Relational Challenge. Cambridge: Cambridge University Press.Find this resource:
MacLean, S. (1988). First Do No Harm. Farnham: Ashgate.Find this resource:
Makoul, G. and Clayman, M. (2006). An integrative model of shared decision-making in medical encounters. Patient Education and Counseling, 60, 301–312.Find this resource:
Mentes, J., Teer, J., and Cadogan, M. (2004). The pain experience of cognitively impaired nursing home residents: perceptions of family members and certified nursing assistants. Pain Management Nursing, 5(3), 118–125.Find this resource:
Mezey, M., Mitty, E., and Ramsey, G. (1997). Assessment of decision-making capacity: nurse’s role. Journal of Gerontological Nursing, 23(3), 28–35.Find this resource:
Miller, J. (2010). The Body in Question. London: Random House.Find this resource:
Mok, E., Lau, K.-P., Lam, W.-M., et al. (2010). Health-care professionals’ perspectives on hope in the palliative care setting. Journal of Palliative Medicine, 13(7), 877–883.Find this resource:
Moskop, J. (2004). Improving care at the end of life: how advance care planning can help. Palliative and Supportive Care, 2, 191–197.Find this resource:
Murillo, M. and Holland, J. (2004). Clinical practice guidelines for the management of psychosocial distress at the end of life. Palliative and Supportive Care, 2, 65–77.Find this resource:
Nelms, T. and Eggenberger, S. (2010). The essence of the family critical illness experience and nurse-family meetings. Journal of Family Nursing, 16(4), 462–486.Find this resource:
Nolan, M. et al. (2008) Family healthcare decision-making and self efficacy with patients with ALS at the end of life. Palliative and Supportive Care, 6, 273–280.Find this resource:
O’Neill, O. (2002). Autonomy and Trust in Bioethics. Cambridge: Cambridge University Press.Find this resource:
O’Shea, T. (2011). Consent in History, Theory and Practice. Essex Autonomy Project Green Paper Report. University of Essex: Essex Autonomy Project. [Online] Available at: <http://autonomy.essex.ac.uk/consent-in-history-theory-and-practice>.Find this resource:
Rando, T.A. (1984). Grief, Dying and Death: Clinical Interventions for Caregivers. Champaign, IL: Research Press.Find this resource:
Reinke, L., Shannon, S., Engelberg, R.A., et al. (2010). Supporting hope and prognostic information: nurses’ perspectives on their role when persons have life limiting prognoses. Journal of Pain and Symptom Management, 39(6), 982–992.Find this resource:
Rempel, G. (2007). Interactive use of genograms and ecomaps in family caregiving research. Journal of Family Nursing, 13, 403–419.Find this resource:
Sokol, D. (2006). How the physician’s nose has shortened over time: a historical review of the truth-telling debate in the physician-patient relationship. Journal of the Royal Society of Medicine, 99, 632–636.Find this resource:
Stacey, D., Legare, F. Pouliot, S., et al. (2010). Shared decision-making models to inform an interprofessional perspective on decision making: a theory analysis. Patient Education and Counseling, 80, 164–172.Find this resource:
Steiber-Roger, K. (2006). A literature review of palliative care, end of life and dementia. Palliative and Supportive Care, 4, 295–303.Find this resource:
Tariman, J., Berry, D.L., Cochrane, B., et al. (2010). Preferred and actual participation roles during health care decision-making in patients with cancer: a systematic review. Journal of Oncology, 21, 1145–1151.Find this resource:
Tulsky, J. (2005). Beyond advance directives: importance of communication skills at the end of life. Journal of the American Medical Association, 294(3), 359–364.Find this resource:
Volicer, L. and Ganzini, L. (2003). Health professionals’ views on standards for decision-making capacity regarding refusal of medical treatment in mild Alzheimer’s disease. Journal of the American Geriatrics Society, 51, 1270–1274.Find this resource:
Xue, D., Wheeler, J., and Abernethy, A. (2011). Cultural differences in truth telling to cancer persons: Chinese and American approaches to the disclosure of bad news. Progress in Palliative Care, 19(3), 125–131.Find this resource:
Additional material and online references
Clinical case: communicating bad news
Video 5.4.1 illustrates a clinical case trigger video. The extract is included in ‘Communicating Bad News’—a contributory module to Education for Physicians in End-of-Life Care (<http://epec.net>). The EPEC curriculum is presented in 16 modular topics that cover a range of issues in palliative and end-of-life care. EPEC distance learning modules may be used as a supplement to other EPEC materials or as a refresher on the core skills of palliative care. Each module provides continuing education required for continuing medical education, which is issued as an instant certificate following passing of the post-test and completion of the evaluation.
The 30–60-second clip comprises a clinician–patient interaction that includes delivering bad news. The goal of this case is not necessarily to demonstrate the ideal interaction. Instead it aims to prompt you to think about the patient’s perception of their illness/prognosis (Step 2 of the SPIKES model).
HG is a 67-year-old mechanic who emigrated to the United States from Mexico 10 years ago. Dr O’Brien has cared for him and his family for 3 years. Two weeks ago, HG presented to Dr O’Brien with a chief complaint of weakness. On physical exam, he had occult blood in his stool. Laboratory testing revealed iron-deficiency anaemia. HG underwent colonoscopy, which demonstrated a mass in the descending colon. The biopsy revealed a diagnosis of adenocarcinoma.
Dr O’Brien has given HG the news of his colon cancer. The video that follows shows a scene in which she asks HG for his perception of his illness.
At the end of the clip, please think about what you would say next. How would you answer HG’s daughter’s question? How would you evaluate Dr O’Brien’s disclosure?
Video reproduced with permission from Curriculum Emanuel LL, von Gunten CF, Ferris FD, eds. The Education in Palliative and End-of-life Care (EPEC) Curriculum: © The EPEC Project, 1999, 2003.
Adelman, R.D., Greene, M.G., and Ory, M.G. (2000). Communication between older patients and their physicians. Clinics in Geriatric Medicine, 16, 1–24.Find this resource:
Apatira, L., Boyd, E., Malvar, G., et al. (2008). Hope, truth and preparing for death: perspectives of surrogate decision makers. Annals of Internal Medicine, 149(12), 861–868.Find this resource:
Arthur, K. and Kleinman, A. (1980). Persons and Healers in the Context of Culture: An Exploration of the Borderland Between Anthropology, Medicine and Psychiatry. Berkeley, CA: University of California Press.Find this resource:
Bennett, M. (2000). A History of Informed Consent. Ventana Center for Psychotherapy. [Online] Available at: <http://www.ventanacenter.com/articlesbackground_007.htm>.
Casarett, D., Pickard, A., Fishman, J., et al. (2010). Can metaphors and analogies improve communication with seriously ill persons? Journal of Palliative Medicine, 13(3), 255–260.Find this resource:
Cherny, N. (2012). Controversies in oncologist-patient communication: a nuanced approach to autonomy, culture and paternalism. Oncology, 26(1), 37–43, 46.Find this resource:
Edwards, A., Elwyn, E., Hood, K., et al. (2003). The development of COMRADE—a patient based outcome measure to evaluate the effectiveness of risk communication and treatment decision-making in consultations. Patient Education and Counseling, 50, 311–322.Find this resource:
Edwin, A. (2008). Don’t lie but don’t tell the whole truth: the therapeutic privilege—is it ever justified? Ghana Medical Journal, 42(4), 156–161.Find this resource:
Eisenberger, A. and Zeleznik, J. (2004). Care planning for pressure ulcers in hospice: the team effect. Palliative and Support Care, 2(3), 283–289.Find this resource:
Emanuel, L.L. and Emanuel, E. (1989). The medical directive: a new comprehensive advance care document. Journal of the American Medical Association, 261(22), 3288–3293.Find this resource:
Feldman-Stewart, D., Brennenstuhl, S., McIssac, K., et al. (2006). A systematic review of information in decision aids. Health Expectations, 10, 46–61.Find this resource:
Fineberg, I.C. (2005). Preparing professionals for family conferences in palliative care: evaluation results of an interdisciplinary approach. Journal of Palliative Medicine, 8, 857–866.Find this resource:
Forster, M. (2010). Isa & May. London: Chatto and Windus.Find this resource:
Gurnah, A. (2011). The Last Gift. London: Bloomsbury.Find this resource:
Hewison, A., Badger, F., Clifford, C., et al. (2009). Delivering gold standards in end of life care in care homes: a question of team work? Journal of Clinical Nursing, 18, 1756–1765.Find this resource:
Horgas, A., Nichols, A., Caisy, A., et al. (2007). Assessing pain in persons with dementia: relationships among the non-communicative patient’s pain assessment instrument, self-report, and behavioral observations. Pain Management Nursing, 8(2), 77–85.Find this resource:
Ibsen, H. (2009). The Wild Duck. Oxford: Oxford World Classics.Find this resource:
Joseph-Williams, N., Edwards, A., and Elwyn, G. (2010). The importance and complexity of regret in the measurement of ‘good’ decisions: a systematic review and a content analysis of existing assessment instruments. Health Expectations, 14, 59–83.Find this resource:
Mankell, H. (2012). The Troubled Man. New York: Vintage Crime/Black Lizard.Find this resource:
McClement, S., Chochinov, H., Hack, T., et al. (2007). Dignity therapy: family member perspectives. Journal of Palliative Medicine, 10(5), 1076–1082.Find this resource:
Mezey, M., Mitty, E., and Ramsey, G. (1997). Assessment of decision-making capacity: nurse’s role. Journal of Gerontological Nursing, 23(3), 28–35.Find this resource:
Monagle, J.F. (1998). Health Care Ethics: Critical Issues for the 21st Century. Gaithersburg, MD: Aspen Publications.Find this resource:
Munn, J., Dobbs, D., Meier, A., et al. (2008). The end of life experience in long term care: five themes identified from focus groups with residents, family members and staff. The Gerontologist, 48(4), 485–494.Find this resource:
Murray, P. (1990). The history of informed consent. Iowa Orthopedic Journal, 10, 104–109.Find this resource:
Narayan, R.K. (2006). The Physician’s Word in Malgudi Days. New York: Penguin Twentieth Century Classics.Find this resource:
Nwankwo, K.C. and Ezeome E. (2011).The perceptions of physicians in South East Nigeria on truth-telling for cancer diagnosis and prognosis. Journal of Palliative Medicine, 14(6), 700–703.Find this resource:
O’Connor, M., Fisher, C., and Guilfoyle, A. (2006). Interdisciplinary teams in palliative care: a critical reflection. International Journal of Palliative Nursing, 12(3), 132–137.Find this resource:
Rando, T.A. (1993). Treatment of Complicated Mourning. Champaign, IL: Research Press.Find this resource:
Rempel, G., Neufeld, A., and Kushner, K.E. (2007). Interactive use of genograms and ecomaps in family caregiving research. Journal of Family Nursing, 13, 403–419.Find this resource:
Rizzo, V.M., Engelhardt J., Tobin, D., et al. (2010). Use of stages of change transtheoretical model in end-of-life planning conversations. Journal of Palliative Medicine, 13(3), 267–271.Find this resource:
Rozario, P. and DeRienzis, D. (2008). Familism beliefs and psychological distress among African American women care givers. The Gerontologist, 48(6), 772–780.Find this resource:
Steinhauser, K., Stewart, A., Byock, I., et al. (2009). Seriously ill patients’ discussions of preparation and life completion: an intervention to assist with transitions at the end of life. Palliative and Supportive Care, 7, 393–404.Find this resource:
Sturman, E. (2005). The capacity to consent to treatment and research: a review of standardized assessment tools. Clinical Psychology Review, 25, 954–974.Find this resource:
Swaminath, G. (2008). The physician’s dilemma: truth telling. Indian Journal of Psychiatry, 50, 83–84.Find this resource:
Weissman, D. and Derse, A. (2012). EPERC (End of Life Palliative Education Resources Center) Fast Facts and Concepts #164 and #165. [Online] Available at: <http://www.eperc.mrcw.edu/EPERC/FastFactsIndex/ff_164.htm>.
Worden, J.W. (1991). Grief Counseling and Grief Therapy: A Handbook for the Mental Health Practitioner (2nd ed.). London: Springer.Find this resource:
Wright, L.M. and Leahey, M. (1999). Maximising time, minimizing suffering: the 15 minute (or less) family interview. Journal of Family Nursing, 5, 259–274.Find this resource:
Yalom, I. (2008). Staring at the Sun: Overcoming the Dread of Death. St Ives: Piatkus.Find this resource: