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50
The Therapeutic
Implications of Dignity in
Palliative Care
Bridget Margaret Johnston
Harvey Max Chochinov
 Death is not the ultimate tragedy of life. The ultimate tragedy is
depersonalization—dying in an alien and sterile area, separated from the
spiritual nourishment that comes from being able to reach out to a loving
hand, separated from the desire to experience the things that make life
worth living, separated from hope.
Norman Cousins, Anatomy of an Illness
Defining Dignity
A Model of Dignity in the Terminally Ill
Addressing Dignity in Clinical Care
Illness Related Concerns Symptom Distress
Level of Independence
Dignity Conserving Repertoire
Dignity Conserving Perspectives
Dignity Conserving Practices
Social Dignity Inventory
Conclusion
Summary

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 Dictionary1 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
2|Page

‘dignus’ meaning worthy. The Universal Declaration on human

rights2 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.3 Empirical work by Chochinov et al studying dying patients
and their families4–6 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.
3|Page

TABLE 50-1 Model of DignityFrom Chochinov HM: Dignity-

conserving care—a new model for palliative care: helping the
patient feel valued, JAMA 287(17):2253, 2002.
MAJOR DIGNITY CATEGORIES, THEMES, AND SUB-THEMES
Illness Related Dignity Conserving Social Dignity
Concerns Repertoire Inventory
Dignity Conserving
Perspectives
○
continuity of self
○
role preservation
○
generativity/legacy
○
Level of maintenance of pride
○
Independence
hopefulness
○
Cognitive acceptance
Acuity ○
Functional resilience/fighting spirit
Capacity Dignity Conserving
Symptom Distress Privacy
Practices
Physical Distress ○ Boundaries
Psychological Distress living “in the moment” Social Support
○ ○ Care Tenor
medical uncertainty maintaining normalcy Burden to Others
○ ○ Aftermath
death anxiety seeking spiritual comfort 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.7–8 A recent qualitative study9 (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
4|Page

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.

TABLE 50-2 Thematic Framework from FindingsFrom

Johnston B, McGill M, Milligan S, McElroy D, Foster C, and
Kearney N: Self care and end of life care in advanced cancer:
literature review, Eur J Oncol Nurs PMID 19501021, 2009.
Theme Subtheme Research Question
1
From the perspectives of patients
1. Goal setting and carers, what is their
2. How others treat experience of end of life care?
you 2
3. Maintain normality What self care strategies enable
Maintaining 4. Taking a patient and carers to cope with
Normality break/holiday their end of life care?
1
From the perspectives of patients
1. Euthanasia and carers, what is their
2. Getting worse experience of end of life care?
3. Leaving family 2
behind What self care strategies enable
Preparing for 4. Planning funeral patient and carers to cope with
Death 5. Process of dying their end of life care?
1
From the perspectives of patients
1. Carer and carers, what is their
support/informatio experience of end of life care?
n 2
2. Talking about What support people with
Support from difficult issues advanced cancer perceive that
Family/Friends 3. Respite they require in order to self care?
5|Page

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).

T A B L E 50-3
Examples of Therapeutic Interventions to
Conserve Dignity

Major Dignity
Categories, Themes
and Subthemes
Illness Related Concerns
Symptom Distress
Physical distress
Psychological distress
Intervention/Action
1. •
Assess identified symptoms using usual
assessment tools
2. •
Address symptoms using usual guidelines
3. •
Seek help from relevant colleagues
4. •
Use communication skills of active listening
1. •
Refer to Palliative Care Network guidelines
2. •
Assess using HADs scale or similar. Discuss
findings with the team and develop management
plan
3. •
Refer to CPN colleagues if required
4. •
Use communication skills of active listening,
6|Page

Major Dignity
Categories, Themes
and Subthemes Intervention/Action
open questions, appropriate body language
5. •
Check local symptom guidelines
6. •
Rectify highlighted problems as far as possible
7. •
Spend time discussing issues
Medical uncertainly 1. •
Check with consultant/GP/Macmillan CNS what
the patient has been told
2. •
Explore realistic goals and discuss day-to-day
living
3. •
Emphasize what can be done
4. •
Show compassion and reassure patients that there
will be plenty of support and that they will be
cared for
5. •
Be prepared to talk about patients’ death and fear
about dying
6. •
Death anxiety Listen and acknowledge patients perceptions
1. •
Respect patient’s decisions with regard to
personal and medical care
2. •
Acknowledge the balance between providing care
Level of Independence and patients’ independency
1. •
Treat delirium; when possible, avoid sedating
Cognitive acuity medication
1. •
Use of orthotics; physiotherapy, occupational
Functional capacity therapy
Dignity-Conserving
Repertoire
Dignity-Conserving
Perspectives
1. •
Continuity of self Treat patients with regard to the nature of the person, their
7|Page

Major Dignity
Categories, Themes
and Subthemes Intervention/Action
feelings, their individuality, and their wishes
2. •
Support patients in maintaining even simple routines
3. •
If requested, help patients maintaining their grooming;
make hair styling, shaving, and make-up available
1. •
Maintaining of pride Being with the person and show personal interest
1. •
Listening to the patient’s life history
2. •
Accommodate activities that are meaningful to the patient,
Role preservation such as hobbies, sports, or other interests
1. •
Support patients to refocus their hope onto things that can
be realistically achieved
2. •
Do not give false hope but emphasize positive aspects
3. •
Accept denial as a way of coping
4. •
Hopefulness Emphasize the person’s worth as a person
1. •
Encourage patients to talk about things they are proud that
they have achieved
2. •
Listen to and acknowledge patient’s perceptions on what
they mean need to be done
3. •
Generativity/legacy Support patients in achieving these things
1. •
Keep patients involved in treatment and care decisions
2. •
Advocate for patient’s wishes with health care team and
family if patient’s is assert of own needs or wishes
3. •
Autonomy/control Listen to patients and take them seriously
1. •
Acceptance Listen to patient’s stories about the present and the past
Dignity-Conserving
Practices
1. •
Support patients in following what is going on in society by
radio, TV, or discussions with others
2. •
Living in the moment Emphasize patients to take advantage of moment when
8|Page

Major Dignity
Categories, Themes
and Subthemes Intervention/Action
having the strength or not being in pain
3. •
Help patients to adjust usual routines to their health
situation
Maintaining normalcy
1. •
See to it that patient has a personal connection to be
comfortable in expressing spiritual needs
Finding/seeking spiritual 2. •
comfort Enable the patient to participate in spiritual practices
Social Dignity Inventory
1. •
Protect patients from unnecessary gaze from others
2. •
Protect patients from involuntarily viewing other patients
in undignified situations
3. •
Listen to the patient’s perception about being touched and
Privacy boundaries uncovered (by unfamiliar or familiar persons)
1. •
Encourage family members’ presence and support family
members
2. •
Maintain an active presence
3. •
Social support Reassure that appropriate care will be available
1. •
Be a good listener, take time and listen to the patient’s story
2. •
Show respect for the patient by trying to comply with
patients wishes, maintain confidentiality, be honest, and
Care tenor respect cultural, religious, and personal traditions
1. •
Burden to others Encourage discussion with those they fear are burdened
1. •
Attend to wills, advanced directives, naming a health care
proxy; share information that might provide guidance
Aftermath concerns or comfort for surviving family members/friends
9|Page

Illness Related Concerns Symptom

Distress
Of all areas pertaining to palliative end-of-life care, symptom
management has the largest evidence base and is dealt with elsewhere
in this textbook.

Level of Independence
There is evidence that many patients, more so than anything, fear loss
of independence at the end-of-life.10–12 Therapeutic interventions must
therefore strive to preserve various elements of patient independence
for as long as possible. These can be quite practical and operational,
such as encouraging self care, using physical aids, and environmental
modifications that facilitate access and
maneuverability.9 Psychological approaches must balance between
helping patients accommodate to loss, while highlighting non-illness
encumbered domains of independence and preserved function, which
can be invoked well into advanced illness. These include partaking in
clinical decision making; to the extent possible, directing daily care;
and utilizing communications technologies to facilitate regular contact
with, and extend roles within, various social or vocational networks.
In addition, patients have indicated that living with dependency was
made easier by caregivers (both carers and health professionals) who
were knowledgeable, helped in a willing and pleasant manner, and
established a comfortable climate with small talk, thereby establishing
a trusting relationship.13 Patients have also indicated that being in
control is crucial for maintaining independence.10
Dignity Conserving Repertoire
Dignity Conserving Perspectives
Issues related to sense of self, hopefulness, acceptance, and
generativity form part of a complex landscape defining individual
personhood. Recognizing these issues, and the ability to elicit and
broach them in a sensitive fashion, is a critical starting point.
Exquisite communication and listening skills, along with an approach
imbued with empathy and compassion, are core attributes for
palliative care practitioners.10 The research on dignity underscores the
 10 | P a g e

importance of a therapeutic stance, which provides patients a sense of

affirmation. How patients perceive themselves to be seen is the
strongest predictor of sense of dignity. This insight means that care
providers have a responsibility, as well as an opportunity, to offer
affirming reflections within every clinical contact.14

Life projects and activities are ways of being able to address issues of
generativity, that is, a sense that one is leaving behind something of
oneself. Generativity is a term that was coined by Eric Erikson.
Erikson suggested that there are a series of development tasks we face
during the course of our lifetime. Towards the end of life, we face a
task he called generativity versus despair. He posed the question: “do
we recognize that at some point, our contributions in life are in the
service of those who will outlive us, or do we enter into a state of
despair?”15 This can take many forms, including videos, photographic
projects, and various forms of narratives. The end of life is a natural
time for reflection and for people to reflect on how they want to be
remembered by those they will soon leave behind. Dignity therapy is a
generativity oriented intervention, in the tradition of existential
psychotherapies that are designed to address psychosocial and
existential distress among terminally ill patients.16 Dignity therapy
allows patients to discuss issues that matter most to them or detail
things they would want to be remembered. The outline for the dignity
therapy interview guide (Box 50-1) is based on the themes and sub
themes identified in the Model of Dignity in the Terminally Ill. These
therapist-guided conversations are audio-recorded, transcribed, and
edited. The resulting “generativity document” is returned to the
patient for him or her to bequeath to a family member, friend, or
anyone of their choosing. Dignity therapy has been shown to have
positive subjective outcomes for patients, with the majority of patients
indicating that it heightened their sense of dignity, meaning, and
purpose and with 81% of patients completing the protocol reported
that this novel intervention would help their family.16
Box 50-1Dignity Therapy Question Framework
Tell me a little about your life history; particularly the parts that you either remember most or
think are the most important? When did you feel most alive?

Are there specific things that you would want your family to know about you, and are there
particular things you would want them to remember?
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What are the most important roles you have played in life (family roles, vocational roles,
community-service roles, etc.)? Why were they so important to you, and what do you think
you accomplished in those roles?

What are your most important accomplishments, and what do you feel most proud of?

Are there particular things that you feel still need to be said to your loved ones or things that
you would want to take the time to say once again?

What are your hopes and dreams for your loved ones?

What have you learned about life that you would want to pass along to others?

What advice or words of guidance would you wish to pass along to your (son, daughter,
husband, wife, parents, other[s])?

Are there words or perhaps even instructions that you would like to offer your family to help
prepare them for the future?

In creating this permanent record, are there other things that you would like included?

Dignity Conserving Practices

Dignity conserving practices include being able to maintain normalcy,
live in the moment, and find spiritual comfort. Maintaining usual
routines and living day to day—as long, and to the extent, possible—
are ways of clinging to the familiar, and retaining ways of being that
identify the person as part of the essence of who he or she is.17 In
considering dignity conserving practices, interventional options are as
varied as the individual investment within each of its constituent
domains. For some, music or poetry, for example, might provide a
welcome and familiar ways of engaging life; for others, it might help
them gain access into the realm of the transcendent; while for others
yet, it may hold no resonance whatsoever. Therapeutic creativity and
effectiveness depends on being able to identify specific practices that
still resonate with individual patients, and finding ways to promote,
preserve, or transform those practices in a fashion that remains viable
and meaningful. For example, while attending congregational services
may become less possible, personal prayer, or carrying out meaningful
cultural and spiritual practices within one’s home or hospital setting,
may promote dignity up until the very end of life. Things such as
hobbies, crosswords, and crafts have also been identified as key
activities, which may suit patients nearing the end of life.9
12 | P a g e

Coming to know who people are, and not simply the ailments
they have, is a way of affirming patients’ sense of importance
and enhancing their feelings of being whole persons.
Sometimes a gentle and reassuring touch, specifically holding
the patient’s hand,18 can reinforce that message. The focus of
hope changes over time as illness progresses, with the challenge
being able to help patients refocus their goals onto things that
can be realistically achieved. It is important not to offer, or
collude with, unrealistic expectations. Showing interest in the
patient as a person and encouraging him or her to talk about
their life are ways of providing hope. Patients indicate that
when nurses and other health professionals make them feel
valuable and important, this provides them with hope.19

Social Dignity Inventory

Interventions based on the social dignity inventory include
maintaining and respecting patient privacy. This can be
especially important in how care providers conduct intimate
procedures or examinations. No one wants to be defined on the
basis of what ails him or her; people, after all, are more than
just their bodies. While bodies need attention, people need
acknowledgement. Dignity conserving care provides
acknowledgement, thereby minimizing patient vulnerability
and a sense of being defined based on what they have rather
than who they are. Warmth, compassion, and empathy are
certainly key characteristics of palliative health care
professionals.10 These characteristics are however reliant on
care provider attitudes and perceptions towards
patients.20 Within the social dignity inventory, this is referred to
as the care tenor or simply, the tone of care; that is, providing a
tone that is affirming of personhood.

Care tenor is impermanent; the patient may move settings,

personnel may move, and eventually the patient will die.
13 | P a g e

Continuation of dignity can be assisted by partaking in

generativity measures, along with attending to unfinished
business and personal affairs. Specifically, these are good ways
of responding to aftermath concerns, i.e., those concerns
patients anticipate might arise when they die, for those people
that will soon be left behind.

Conclusion
It is important for health care providers to reclaim the language
of dignity, which so aptly describes the ethos of state-of-the-art,
creative, palliative care. The Model of Dignity provides
empirical guidance and specificity on how to invoke dignity
conserving interventions. Identifying and testing these various
approaches will eventually yield a Dignity Care Pathway, used
to achieve comfort and mitigate suffering for dying patients and
their families. Eventually, helping patients to die with dignity
will be associated with achieving comfort, finding peace, and
receiving comprehensive, exemplary, dignity conserving
palliative care.

The most important human endeavor is the striving for morality in our actions. Our inner
balance and even our very existence depend on it. Only morality in our actions can give
beauty and dignity to life.
Albert Einstein

Summary
This chapter explores the concept of dignity, making reference
to a body of empirical work on a model of dignity, dignity
conserving care, and dignity therapy. It explores the recent use
of the term dignity in the assisted suicide and euthanasia
debate. Finally, this chapter examines why it is important to
reclaim dignity as a term that is clinically relevant in the
provision of palliative care.
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