Defining Dignity

The term dignity is widely used when discussing and debating various and sometimes contentious issues in end-of-life care. Dying with dignity has powerful and provocative connotations and yet, is rarely defined or fully explained.

The Oxford English Dictionary defines dignity as “the state or quality of being worthy of respect.” Thus the term is closely related to concepts like virtue, respect, self-respect, autonomy, human rights, and enlightened reason. The word dignity derives from the Latin word ‘dignus’ meaning worthy. The Universal Declaration on human rights recognizes dignity as a condition closely associated with inherent human rights; “All human beings are born free and equal in dignity and rights …” However, these definitions do not specify end-of-life circumstances and do not examine dignity from the perspective of seriously ill patients.

Dignity in health care is often presumed, yet rarely defined, in terms of its various components and targeted clinical outcomes. Without clarity on how to achieve or maintain dignity within the context of care, it is more at risk for being lost. When dignity is absent from care, people are more likely to feel devalued; they are more likely to sense that they lack control and comfort. The absence of dignity can undermine confidence, and patients may find themselves feeling less able to make decisions. At its worst, loss of dignity equates with feeling humiliated, embarrassed, and ashamed.

A Model of Dignity in the Terminally Ill

Dignity has also been identified as one of the five most basic requirements that must be satisfied in caring for dying patients. Empirical work by Chochinov et al studying dying patients and their families has informed a model of dignity ( Table 50-1 ). The model suggests that patient perceptions of dignity are related to and influenced by three major thematic areas termed: illness related concerns; the patient dignity conserving repertoire; and the social dignity inventory. For instance, illness related concerns relate to issues arising directly from the illness itself and has sub-themes that include level of independence and symptom distress. Level of independence is further subdivided into cognitive acuity, or ability to maintain mental capacity and functional capacity. The major category ‘dignity conserving repertoire’ includes those aspects of patients’ psychological and spiritual landscape, often based on personality and internal resources, which influence the patient’s sense of dignity, whether they are perspectives or practices. The social dignity inventory refers to social concerns or relationship dynamics that enhance or detract from a person’s sense of dignity. The themes in this category are privacy boundaries, social support, care tenor, burden to others, and aftermath concerns.

In recent decades, the term dignity has become associated with the physician-assisted suicide (PAS) and euthanasia agenda (these topics are addressed elsewhere in this textbook). It is important that dignity be reclaimed within the lexicon of routine clinical and bedside care. Within this context, dignity should be considered an essential aim of quality, comprehensive palliative care. There is ample evidence, both from the perspective of patients and carers, that they crave dignity and fear its absence. A recent qualitative study ( Table 50-1 and Table 50-2 ) addressing advanced cancer collected serial, triangulated data from patients within the last year of life, along with their families or friends and their health care providers. Six main themes were identified, including: maintaining normality; preparing for death; support from family/friends; self care strategies/physical; self care strategies/emotional; and support from health care professionals. Maintaining normality and preparing for death were the two most important areas identified by patients. Patients also valued support that enabled them to maintain their independence and remain at home. The overarching issue that came from the findings was that preserving and maintaining dignity and being treated with dignity was paramount to patients and permeated their experience of living with advanced cancer.

Addressing Dignity in Clinical Care

The Model of Dignity in the Terminally Ill provides a clinically relevant, empirically based framework, which can inform and guide dignity-conserving care for patients nearing end-of-life. Every element of the model offers therapeutic possibilities to mitigate distress; in their entirety, these combined approaches could be described as a Dignity Care Pathway (DCP) . While the details of such a care pathway need to be elaborated and empirically tested (work is currently in progress by the authors), the following represent a sampling of what will eventually constitute elements of this novel approach ( Table 50-3 ).

Table 50-3

Examples of Therapeutic Interventions to Conserve Dignity

Major Dignity Categories, Themes and Subthemes	Intervention/Action
Illness Related Concerns
Symptom Distress
Physical distress	• Assess identified symptoms using usual assessment tools • Address symptoms using usual guidelines • Seek help from relevant colleagues • Use communication skills of active listening
Psychological distress	• Refer to Palliative Care Network guidelines • Assess using HADs scale or similar. Discuss findings with the team and develop management plan • Refer to CPN colleagues if required • Use communication skills of active listening, open questions, appropriate body language • Check local symptom guidelines • Rectify highlighted problems as far as possible • Spend time discussing issues
Medical uncertainly	• Check with consultant/GP/Macmillan CNS what the patient has been told • Explore realistic goals and discuss day-to-day living • Emphasize what can be done • Show compassion and reassure patients that there will be plenty of support and that they will be cared for • Be prepared to talk about patients’ death and fear about dying • Listen and acknowledge patients perceptions
Death anxiety
Level of Independence	• Respect patient’s decisions with regard to personal and medical care • Acknowledge the balance between providing care and patients’ independency
Cognitive acuity	• Treat delirium; when possible, avoid sedating medication
Functional capacity	• Use of orthotics; physiotherapy, occupational therapy
Dignity-Conserving Repertoire
Dignity-Conserving Perspectives
Continuity of self	• Treat patients with regard to the nature of the person, their feelings, their individuality, and their wishes • Support patients in maintaining even simple routines • If requested, help patients maintaining their grooming; make hair styling, shaving, and make-up available
Maintaining of pride	• Being with the person and show personal interest
Role preservation	• Listening to the patient’s life history • Accommodate activities that are meaningful to the patient, such as hobbies, sports, or other interests
Hopefulness	• Support patients to refocus their hope onto things that can be realistically achieved • Do not give false hope but emphasize positive aspects • Accept denial as a way of coping • Emphasize the person’s worth as a person
Generativity/legacy	• Encourage patients to talk about things they are proud that they have achieved • Listen to and acknowledge patient’s perceptions on what they mean need to be done • Support patients in achieving these things
Autonomy/control	• Keep patients involved in treatment and care decisions • Advocate for patient’s wishes with health care team and family if patient’s is assert of own needs or wishes • Listen to patients and take them seriously
Acceptance	• Listen to patient’s stories about the present and the past
Dignity-Conserving Practices
Living in the moment	• Support patients in following what is going on in society by radio, TV, or discussions with others • Emphasize patients to take advantage of moment when having the strength or not being in pain • Help patients to adjust usual routines to their health situation
Maintaining normalcy
Finding/seeking spiritual comfort	• See to it that patient has a personal connection to be comfortable in expressing spiritual needs • Enable the patient to participate in spiritual practices
Social Dignity Inventory
Privacy boundaries	• Protect patients from unnecessary gaze from others • Protect patients from involuntarily viewing other patients in undignified situations • Listen to the patient’s perception about being touched and uncovered (by unfamiliar or familiar persons)
Social support	• Encourage family members’ presence and support family members • Maintain an active presence • Reassure that appropriate care will be available
Care tenor	• Be a good listener, take time and listen to the patient’s story • Show respect for the patient by trying to comply with patients wishes, maintain confidentiality, be honest, and respect cultural, religious, and personal traditions
Burden to others	• Encourage discussion with those they fear are burdened
Aftermath concerns	• Attend to wills, advanced directives, naming a health care proxy; share information that might provide guidance or comfort for surviving family members/friends

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