5.6 Dignity and palliative end-of-life care

In recent years, the concept of dignity has garnered increased attention by health-care researchers and practitioners working across various disciplines. Despite this attention (Higginson and Hall, 2007) and debate regarding the overall usefulness of the concept (Macklin, 2004; Schroeder, 2008), there continue to be calls for more in-depth understanding of dignity and its applications to end-of-life care (Billings, 2008). Discussions of dignity remain pervasive, perhaps because health-care providers and patients alike understand that loss of dignity is particularly relevant in the face of declining health or heightened vulnerability. Indeed, the fear of losing one’s dignity towards the end of life, and the implications of this, are very real, despite tensions regarding the use of the term.

These tensions are embedded within a highly politicized environment surrounding the notion of dignity at the end-of-life. ‘Death with dignity’ is often the rallying cry of supporters of assisted suicide and euthanasia (Death with Dignity, 2012). The hospice and palliative care movement, on the other hand, invokes notions of dignity with entirely different goals (Carstairs, 2010): those consistent with alleviating suffering and optimizing comfort to the very end of life. Given the complexities of the topic, the purpose of this chapter is to review issues pertaining to dignity, which are often faced by health-care providers in the context of end-of-life care, including definitions of dignity, discussion as to why dignity is important, and how it applies to clinical practice.

The challenges of defining dignity are complex. The Oxford Dictionary of English describes dignity as, ‘the quality of being worthy or honourable’ (‘Dignity’, 2013). This definition appears to reflect Schroeder’s (2008)  meritorious dignity, a conceptualization stemming from Aristotle’s idea that dignity is associated with virtue. This definition implies that one must deserve dignity, and in acting honourably, it may be achieved (Killmister, 2010). By contrast, the Kantian notion of dignity—commonly espoused in the context of health care, ethics, and human rights—purports that dignity is ‘inalienable and normatively inviolable’, a quality that all rational beings possess (Killmister, 2010, p. 160). Notions of dignity are often conflated with autonomy, and the seeming proximity of these two terms has led some to claim dignity as a ‘useless concept’ in medical ethics, no different from a basic respect for personhood and autonomy (Macklin, 2003). Yet, such claims are problematic in the sense that individuals who lack capacity for autonomous action or thought may consequently be seen as lacking dignity (McClement and Chochinov, 2006), which has particular implications in instances when illness and disability lay claim to personal or individual autonomy.

Efforts have been made to parse out the differences between dignity and autonomy. Pullman (2004) distinguishes between basic dignity and personal dignity. The former refers to the fundamental, intrinsic worth of all humans and is moralistic in nature, while the latter is a socially and individually referenced construction. This echoes work by Bechtel (2011), who distinguishes between inherent dignity—an irreducible and universal quality of all human beings—and non-inherent dignity—contingent on merit and social status. Inherent dignity, like Pullman’s (2004) basic dignity and the concept invoked in documents such as the United Nations Universal Declaration of Human Rights (United Nations General Assembly, 1948), affirm dignity as inseparable from personhood and foundational to freedom and justice. Thus, in contrast to Macklin (2003) and others, inherent dignity is not synonymous with ‘respect’ but rather the justification for respect (Bechtel, 2011).

Self-respect, pride, poise, and self-esteem are all synonymous with dignity (Chapman, 1977). These multiple meanings and ambiguity led Levenson (2007) to describe dignity as a ‘hurrah word—a term of general approval to which no one can object’ (p. 8). Dignity, like the words love or faith, may seem intuitive, especially for professionals in health care who see helping as their primary goal (Chochinov, 2012). Others have suggested that they know dignity when they see it (Macklin, 2004). Perspectives such as these may contribute to the paucity of empirical work surrounding this topic, which has recently been placed under a more exacting, and in some instances empirical, lens.

Several organizations have formed to actively promote dignity in health care, and are beginning to offer helpful perspectives. In a comprehensive report by the UK organization Help the Aged, aimed at raising standards of care and behaviour in treating older people, Levenson (2007) describes dignity in a straightforward fashion; it is about how people feel when they are receiving care. Levenson outlines six guiding principles that underlie dignity in care, providing shape for how dignity manifests in a health setting: dignity in care is inseparable from the wider context of dignity as a whole; dignity is about treating people as individuals; dignity is not just about physical care but also psychosocial and spiritual care; dignity thrives in the context of equal power relationships; dignity must actively be promoted; and dignity is more than the sum of its parts. Within health care, dignity has been connected with how people perceive themselves as reflected through the attitudes and behaviour of others towards them (Chochinov, 2004). Such an explanation implies that how patients are treated by health-care providers has a significant impact on how they feel about themselves, which can profoundly influence their experience and satisfaction with health care.

Still others take an ontological approach to the meaning of dignity. Parse (2010) suggests four tenets of human dignity that emerge from a ‘human becoming’ perspective, wherein ‘human dignity is an august presence, a noble bearing of inherent uniqueness’ (p. 259). These tenets include reverence in terms of a deep respect for what it means to be human, and awe in terms of appreciating the wonders of humanity. Both betrayal (a violation of human trust) and shame (humiliation with dishonouring human worth), erode human dignity in the sense that they violate the core being of another person (Parse, 2010).

Much of the debate and confusion in the literature regarding the importance or utility of the term dignity pertains to its lack of definitional specificity (deRave, 1996; Street and Kissane, 2001). Progress in the field of palliative care in the twentieth century has seen increased attention to understanding dying in terms of dignity and autonomy of the person (Graham and Clark, 2008). Dignity has been identified as one of the five basic requirements in caring for dying patients (Geyman, 1983). A basic tenet of palliative care is to relieve suffering and improve quality of life by addressing physical, spiritual, and psychosocial issues affecting the patient and family (World Health Organization, 2012). Such care can readily be conceived of as enhancing dignity (McClement and Chochinov, 2006). Several researchers and clinicians have suggested that dignity should, in fact, be the central goal of palliative care, given the breath of issues and considerations it subsumes (Coppens, 1998). Recent work has also given voice to patients regarding their conceptualizations and experiences of dignity within the health-care system (Chochinov, 2004; Chochinov et al., 2005, 2006, 2009; Hack et al., 2004; McClement et al., 2004).

Continued discussions and research into the meaning, relevance, and importance of dignity is particularly salient, given the current climate surrounding assisted suicide and euthanasia. While dignity is seen as a fundamental aspect in palliative care (Geyman, 1983; Chochinov, 2006, 2007; World Health Organization, 2012), it is also invoked as the justification for death hastening practices. Organizations such as Death with Dignity National Centre, which promotes and defends assisted suicide, equate dignity with autonomy. Legislation passed in the US states of Oregon and Washington legalizing assisted suicide is coined the Death with Dignity Act. From this perspective, dignity is enhanced by patients exercising personal control over the exact timing and circumstances of their death (Death with Dignity, 2012).

Loss of dignity is indeed a central concern of patients requesting assisted suicide or euthanasia. In a study examining end-of-life decisions amongst patients with amyotrophic lateral sclerosis (ALS) in the Netherlands, Maessen and colleagues found significant differences between those who chose euthanasia or physician-assisted suicide (EAS), continuous deep sedation (CDS), or neither of those options. When informal caregivers were asked why the patient hastened their death, they reported the reasons as ‘no chance of improvement’, ‘loss of dignity’, ‘being dependent’, and ‘fatigue’. These experiences were all significantly higher in patients choosing EAS compared to those who chose CDS or neither (Maessen et al., 2009). When asked why their patients had selected EAS, the most common reason cited by 57% of Dutch physicians was ‘loss of dignity’ (Van der Mass et al., 1991). In Washington state, physicians reported that 72% of their patients requesting hastened death were concerned about loss of dignity (Back et al., 1996).

Notably absent from much of the research surrounding concepts of dignity, suffering, and end-of-life choices are the voices of dying patients themselves (McClement and Chochinov, 2006). Karlsson and colleagues interviewed 66 dying cancer patients, inquiring about the nature of suffering with respect to euthanasia, a good death, and dignity. In this qualitative study, the general attitude of study participants toward euthanasia varied. Twenty-nine per cent of the sample were in favour of euthanasia, 20% opposed euthanasia, and the majority (51%) were undecided on the issue. Patients who feared intolerable suffering and were inclined to euthanasia discussed the complex nature of suffering, including meaninglessness, whereas those who felt euthanasia was unwanted or unnecessary felt that suffering could be overcome in various ways, often linking to their own experiences of ameliorated pain or supportive contact with health-care professionals (Karlsson et al., 2012).

Wilson and colleagues (2000) explored the personal attitudes of 70 terminally ill cancer patients receiving palliative care toward euthanasia and physician-assisted suicide. The study also examined specific end-of-life concerns identified in previous research exploring euthanasia and assisted suicide, including loss of dignity, sense of being a burden to others, and hopelessness. The majority of participants (73%) believed that EAS should be legalized. Reasons for this position included one’s right to choose and the presence of pain. Moral and religious concerns were raised by those individuals who opposed such legalization. Eight of the patients interviewed (12%) who would have made a request for euthanasia at the time of the interview had greater loss of interest or pleasure in activities, felt more hopeless, and had a higher prevalence of depressive disorders compared to the rest of the sample. These findings underscore the salience of accessing patients’ perspectives surrounding end-of-life choices, and the importance clinicians must assign to the psychological domains of care (see Chapter 5.7).

Increasingly, researchers are attending to patient and health-care provider experiences of dignity, providing a meaningful context to academic discourse. Participants in a multi-country, World Health Organization survey indicated that next to receiving prompt attention for medical issues, dignity was the most important aspect of non-clinical care (Valentine et al., 2008). Qualitative research by Jacobson has suggested that persons marginalized by poverty, illness, or both, are indeed very keen to discuss their views on and experiences with dignity in health care (Jacobson, 2009). Beach and colleagues found that the concept of autonomy (as gauged by involvement in treatment decisions) is culturally bound within Western ideologies. They reported that being treated with dignity, rather than only being involved in treatment decisions, resulted in greater treatment adherence for racial/ethnic minorities. Further, for patients from all backgrounds, being treated with dignity was significantly associated with receiving optimal preventative care, even when adjusted for involvement in treatment decisions (Beach et al., 2005).

Jacobson used grounded theory to describe patients’ experiences of dignity violation within health care. In her interviews with experts in health and human rights and marginalized populations within the health-care system, several themes emerged. All participants reported experiences of rudeness, indifference, condescension, dismissal, disregard, dependence, objectification, restriction, labelling, contempt, discrimination, revulsion, deprivation, assault, and abjection as violations of dignity (Jacobson, 2009).

Explorations of how providers maintain patient dignity offers further insight into how dignity is constructed within health care. Lin and Tsai found that Taiwanese nurses (N = 30) maintain the dignity of their patients by showing them respect (100%), protecting privacy (93.3%), providing emotional support (40%), treating all patients in a similar fashion (13%), and maintaining patients’ body image (13%) (Lin and Tsai, 2011). Dignity is seen as an essential component of nursing, suggesting that the nurse’s role and how they experience the patient, often reveals more about what may be bothering them than a medical examination could (Castledine, 2006). In an observational study of nurse–patient interactions, Henderson and colleagues identified both physical and social environments that can enhance dignity, including maintenance of privacy during transfers and toileting, and treating patients in a courteous and age-appropriate manner (Henderson et al., 2009).

Chochinov and colleagues have been engaged in a programme of research seeking to better understand factors that enhance and erode dignity for terminally ill patients. In semi-structured interviews, they explored how patients with cancer perceived dignity. Using latent content analysis and constant comparative techniques, they identified three major categories that have a bearing on dignity-related issues, and generated an empirical model of dignity in the terminally ill (Chochinov et al., 2002b) (Table 5.6.1):

The integration of these three categories forms the model of dignity in the terminally ill. Patients who experience difficulties with aspects of the social dignity inventory and/or illness-related concerns may experience an eroded sense of dignity. Yet, this can be moderated by their dignity-conserving repertoire. By invoking or utilizing resources contained within the dignity-conserving repertoire (i.e. feeling hopeful, maintaining normalcy, spiritual care), patients may be able to buffer dignity-associated challenges. The strength or integrity of those resources will determine the degree to which these assaults will erode or undermine individual sense of dignity. In this sense, the model is dynamic in that it incorporates aspects of dignity that are internal and external to the individual, and provides a framework for health-care providers to mitigate dignity-related distress (Chochinov et al., 2002b).

In an effort to better assess patients’ distress at the end-of-life, Chochinov and colleagues created the Patient Dignity Inventory (PDI). Developed using the themes and subthemes of the model of dignity in the terminally ill, the PDI is a 25-item self-report measure (Table 5.6.2) that can be implemented to better understand the spectrum of patient dignity-related distress. The psychometric properties of the PDI have been examined, demonstrating robust internal consistency (α = 0.93) and test–retest reliability (r = 0.85). Factor analysis revealed five factors, labelled symptom distress, existential distress, dependency, peace of mind, and social support. Concurrent validity was established with each factor showing significant correlations with other common measures of distress (Chochinov et al., 2008). This measure provides one way that dignity-related distress can be identified, measured, and possibly tracked in a range of care settings. Administration of the PDI to 253 patients receiving palliative care found that patients identified nearly six problems each. The most highly endorsed items included a combination of distressing physical symptoms, functional limitations (not able to continue usual routines, not able to perform tasks of daily living, not able to carry out important roles), and existential concerns (no longer feeling like who I was) (Chochinov et al., 2009). These findings speak to the importance of conducting patient assessments that encompass more than physical symptom distress. The PDI may help clinicians identify and track the complex and diverse nature of distress in the terminally ill, hence paving the way toward effective, dignity-conserving, end-of-life care.

A recently completed study examined how psychosocial oncology professionals (N = 90) utilized the PDI as a clinical tool within their practice. In almost 80% of instances, the PDI was able to uncover one or more areas of distress previously unknown to the clinician. Thus, the PDI may enable more efficient and targeted psychosocial care amongst clients experiencing distress in the context of cancer (Chochinov et al., 2012b).

Dignity is profoundly influenced by the tone and texture of communication between the care provider and the patient; with acknowledgement of the patient as a whole person being paramount (Finset, 2010). Chochinov proposed an ABCD acronym for dignity-conserving care, rooted in the idea that how a patient views themselves is reflected in how they perceive they are seen by those providing care (Chochinov, 2002). This framework serves as a reminder to practitioners that their Attitude, Behaviour, Compassion, and Dialogue will markedly influence patient experience of dignity in care. Practical suggestions for implementing the ABCD framework are outlined in Table 5.6.3 (Chochinov, 2007).

Recognition for the importance of meaning and spiritual issues in palliative medicine (Puchalski et al., 2009) has seen the emergence of therapeutic interventions aimed at improving spiritual and psychological well-being at the end of life. Meaning-centred group psychotherapy has been shown to provide terminally ill patients with significant improvement in spiritual well-being and meaning, compared to patients participating in general supportive therapy (Breitbart et al., 2010). Breitbart and colleagues recently conducted a randomized controlled trial of individual meaning-centered psychotherapy (IMCP) with 120 patients who had stage III or IV cancer. Patients were assigned to receive either IMCP or a control treatment of therapeutic massage for 7 weeks, and were assessed on measures of spiritual well-being, quality of life, depression, anxiety, hopelessness, symptom burden, and symptom distress at baseline and 2 months post intervention. Patients in the ICMP condition showed significant improvement over the control group on measures of spiritual well-being (both sense of meaning and faith), quality of life, and symptom burden and distress (Breitbart et al., 2012).

Another approach coined dignity therapy consists of a brief psychotherapeutic intervention aimed at improving quality of life and reducing suffering for terminally ill patients and their families. The questions guiding dignity therapy are based on key themes and issues embedded within the model of dignity in the terminally ill. A trained professional guides the therapeutic encounter, helping the patient to elicit memories, hopes, and wishes for family members; life lessons they might wish to share; and legacy-related content they want to leave behind (Chochinov et al., 2011). Engagement in this process, along with affirmation from the dignity therapist, is meant to enhance a sense of meaning and purpose, sense of self, and overall sense of dignity. These sessions are recorded, transcribed verbatim, and then carefully edited into a readable narrative or generativity document. This document is returned to the patient, for any final editing and approval, for them to bequeath to friends and family of their choosing.

The effectiveness of dignity therapy has been demonstrated in various clinical trials. Chochinov and colleagues conducted a feasibility study of dignity therapy with terminally ill patients in Winnipeg, Canada and Perth, Australia. All patients who enrolled in palliative care in these cities and met eligibility requirements (less than 6 months to live, over age 18, English speaking, commitment to three to four contacts, no cognitive impairments, willing and able to provide verbal and written consent) were invited to participate. Over a 2-year timeframe, 100 patients—50 from each site—completed the study. Participants completed a broad range of tests to assess depression, anxiety, hopelessness, sense of dignity, suicidality, and sense of meaning and purpose, before and after completing the dignity therapy protocol. Ninety-one per cent of participants reported that they were satisfied or very satisfied with the intervention and 86% said it was helpful or very helpful. Patients also reported that the intervention helped their sense of purpose (68%) and meaning (67%). Just under half of participants indicated that dignity therapy increased their will to live (Chochinov et al., 2005).

A randomized controlled trial of dignity therapy provides further evidence for its application within palliative care. Data was collected between 2005 and 2011 at three study sites (Winnipeg, Canada; New York, United States; and Perth, Australia). Four hundred and forty-four participants aged 18 years and older with a life expectancy of less than 6 months who were receiving palliative care in a hospital or community setting were randomized to one of three study conditions: dignity therapy plus standard palliative care, client-centred care plus standard palliative care, and standard palliative care only. Participants in the dignity therapy condition received this intervention as described above. For client-centred care, participants engaged in supportive psychotherapy focused on present, rather than generativity-related, issues. Patients randomized to standard palliative care had access to all support services available within their site. The primary outcomes of the study were reductions in measures of distress, as measured by mean changes between baseline and post intervention. Standardized measures of psychosocial well-being, symptom distress, depression, anxiety, and hopelessness were used to assess these outcomes. The secondary outcomes were based on a post-intervention questionnaire capturing patient experiences regarding their participation in the study and the ways in which it was meaningful for them and their family.

Floor effects of initial distress resulted in non-significant differences between the study groups for the primary measures, such as depression, desire for death, and suicidality. However, dignity therapy outperformed the other study arms on the post-intervention questionnaire. Compared to client-centred therapy and standard palliative care, patients receiving dignity therapy were significantly more likely to report that the intervention was helpful, that it enhanced their sense of dignity, that it changed how their family saw or appreciated them, and that it would be helpful to their families (Chochinov et al., 2011).

Family members whose loved ones participated in dignity therapy have also been evaluated, to determine their perceptions of its impact on their deceased loved one, along with its influence on their bereavement experience. In a study of 100 patients who completed dignity therapy, 60 family members provided feedback on the experience approximately 1 year after the patient’s death. Ninety-five per cent of family members whose loved ones received dignity therapy reporting it had helped the patient, and just over three-quarters indicated that the generativity document helped them during their grief and would be a source of comfort to them in the future (McClement et al., 2007).

Dignity therapy has been successfully delivered in various countries and languages, with minor adaptations for cultural differences (e.g. the notion of ‘pride’ did not resonate with Danish participants) (Houmann et al., 2010). It has also been implemented with geographically isolated patients using telemedicine (Passik et al., 2004). In addressing the floor effects of distress found in Chochinov et al.’s (2011) study, Julião and colleagues conducted a randomized controlled trial of dignity therapy with a Portuguese population experiencing high baseline levels of distress. Recruited from an inpatient palliative care unit, 29 patients received dignity therapy plus standard palliative care, while 31 control group patients received standard palliative care alone. Depression and anxiety, as measured by the Hospital Anxiety and Depression Scale (HADS—Portuguese version) (Pais-Ribeiro et al., 2007), were assessed at baseline (T1), day 4 (T2), day 15 (T3), and day 30 (T4). At baseline, compared to participants in the Chochinov et al. (2011) study, these participants had higher HADS-depression scores (12.9 versus 5.86) and HADS-anxiety scores (8.83 versus 5.22). For those in the dignity therapy condition, the intervention was conducted between baseline and T2.

Within the dignity therapy group, participants showed significant reductions from baseline in depression at T2 and T3, which plateaued by day T4; and significant reductions in anxiety at all three follow-ups. Within the standard palliative care group, depression ratings increased significantly between baseline and all three follow-up assessments, while no significant changes in anxiety were found. Compared to the standard palliative care group, patients in the dignity therapy group had significantly lower depression ratings at T2 and T3, and significantly lower anxiety ratings at T2, T3, and T4 (Julião et al., 2013).

The application of dignity therapy in community settings has also been explored, providing insights into the practical and logistical issues of offering this intervention. Montross and colleagues delivered dignity therapy to patients in a community-based hospice, with a psychologist trained in the protocol providing information about the service to members of the hospice team at meetings and rounds. This resulted in just over 100 referrals for dignity therapy, with 27 patients completing the full dignity therapy protocol (reasons for non-completion included cognitive/physical impairments impeding speech or comprehension, death before completion, patient declining participation, and patients lost to follow-up).

In terms of the logistics of providing the service, nearly three-quarters of referrals were from social workers. The average cost of a patients’ transcript was US$55.94, and an average of 2993 words in length, with the therapist spending an average of 6.3 hours per patient in order to complete the dignity therapy document. Qualitative analysis of the themes of patients’ documents revealed similarities to previous studies (Hack et al., 2010), including discussions of family, pride in their children/accomplishments, pleasure, and life experiences (Montross et al., 2011).

Dignity therapy has also been applied to participants who are not imminently dying. Avery and Baez recently published a case report in which a 61-year-old woman hospitalized for major depressive disorder participated in dignity therapy. She reported that dignity therapy had helped her feel more hopeful and improved her mood. That it can aid in improving depressive symptoms when distress is high (Julião et al., 2013), suggests that dignity therapy may facilitate feelings of increased purpose, meaning, and hopefulness in people with depression, and may also help their families (Avery and Baez, 2012). A recent feasibility study by Chochinov and colleagues has shown the benefits of dignity therapy for the frail elderly living in residential care. Dignity therapy was conducted with both cognitively intact residents and cognitively impaired residents by way of engaging family proxies.

While differing narrative themes emerged between the two groups, the majority of residents’ family members and healthcare providers reported the intervention to be helpful to the patient. Further, family members felt the dignity therapy document would provide them comfort, and the majority of healthcare providers reported that the intervention changed how they saw and appreciated the resident and would be helpful in terms of how they provide care (Chochinov et al., 2012a). It thus appears that dignity therapy may have applications across a range of settings and a variety of patient populations. Moreover, the research on dignity therapy underscores the notion that knowing the patient as a person can improve care.

Although more attention is being paid to notions of dignity, spirituality, and meaning at the end of life, further research is needed. While the term dignity is multifaceted and complex, its prominence in patient-centred care should spur inquiry across diverse context wherein notions of dignity are particularly salient, that is, the frail elderly, the chronically ill or disabled, those with major mental disorders, and patients encountering cognitively deterioration or impairment.

The notion of dignity in care and ways of affirming personhood also require further examination. These studies may broach cross-cultural comparisons of engaging dignity (Lee, 2010), and how cultural diversity impacts decision-making and experiences at the end-of-life for patients, families, and care providers. Longitudinal research, examining how patients experience dignity over the trajectory of their illness, would help inform dignity-based approaches that are sensitive to the needs and capacities based on disease imposed variables.

A central theme in palliative care is that the patient and the family constitute the unit of care; with the quality of life of family members directly impacted by the care the patient receives (McClement et al., 2007). Poor palliative care can complicate the grieving process and can leave family members with feelings of regret (Shiozaki et al., 2005; McClement et al., 2007), increasing bereavement-related health risks (Prigerson et al., 2009). Thus, researched aimed at better understanding family members’ perspectives of dignity and how this impacts their experience of their loved one’s illness would be beneficial.

The very nature of being a patient makes one vulnerable, wherein personal dignity may be in jeopardy (Jacobson, 2009). The violation of dignity at the end of life is a significant issue for patients and their families. Consistent with the goals of palliative medicine, dignity should be recognized as a key element of comprehensive care, with access to services—including optimal pain control, psychosocial, and spiritual support—posited as a fundamental human right (Breitbart, 2008). Understanding the multiple dimensions of dignity and how it is experienced in proximity to death, will contribute to a comprehensive and effective approach, which will improve care at the end of life.