Dignity and QoL are complex concepts which can mean different things to different people. They include physical, social, psychological and spiritual wellbeing, and feelings of value and self-worth. In the following we consider these related concepts separately but acknowledge that they are interconnected and related to the concept of wellbeing.
Both concepts are reflected in the Aged Care Quality Standards which apply to all Australian aged care services.  Standard 1 Consumer Dignity and Choice states “Being treated with dignity and respect is essential to quality of life.” This standard describes the right of the older person to dignity and respect and for them to be able to make choices about the care and services they want. The Standard articulates the importance of services addressing social, spiritual, psychological and medical needs of the people in their care and being responsive, inclusive and sensitive to personal, cultural and linguistic diversity.
Also described in Standard 1, is dignity of risk, the right of the person to make their own decisions about their care and services, as well as their right to take risks. Respecting this right requires organisations to manage risk so that care recipients and the workforce remain safe. In meeting these obligations, organisations are expected to show how they involve the person and look for solutions that have the least restriction on the person’s choices and independence.
Overall, the quality of the evidence is acceptable to high. It is recognised that dignity and quality of life (QoL) are complex and subjective concepts, difficult to define and to accurately measure. [2-4] Most of the included systematic reviews [2,3,5-14] and guidelines [15-17] relate to general adult populations. Three related specifically to older people [18-20] and three to cognitive impairment or dementia. [4,21,22] Lower level papers [20,23-36], textbooks [37-41], and other sources [1,42-47] were included to give context to the topic.
Five reviews related to dignity, dignity therapy and dignity-conserving care in palliative care. [3,5,6,9,12] Three systematic review on dignity therapy were included [12-14] one of which discusses older populations as a distinct subset.  Only two papers included a meta-analysis. [4,19]
The National Consensus Statement: essential elements for safe and high-quality end-of-life care (2015)  recognises dignity as an essential component of end-of-life care.
A person dying, their family and health professionals consider dying with dignity to be important, however, the meaning of dignity is an ambiguous concept. Dignity is defined as 'the quality or state of being worthy, honoured or esteemed’. [37,38] Dignity in a healthcare setting has been described as how people feel when they are receiving care and encompasses physical, psychosocial and spiritual care with a focus on holistic care where a person is given all opportunity to be involved in their care in line with their capacity and wishes. [37,38] By holding the preservation of dignity as a goal of care, end-of-life care can be holistic and tailored to the individual’s personal needs and values, particularly important at a time of declining health or heightened vulnerability. [37,38]
In developing an empirical model of dignity [24,25], Chochinov and colleagues developed the Patient Dignity Inventory (PDI), a measurement instrument that covers 25 potential patient concerns that can help clinicians to detect and monitor end-of-life dignity-related distress. In 2008, the PDI was shown to be a valid and reliable instrument in palliative care.  In a later study using the PDI to assess terminally ill older people with cancer, the most highly endorsed items of this tool 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).  These findings indicate the importance of assessing a person holistically, that is, their physical, psychological, existential, and spiritual concerns.
The PDI is a self-report questionnaire which has limitations for use with people with cognitive impairment or dementia as the results “are likely to reflect a fractured sense of self.”  (p.3) “It is possible that residents with minor cognitive impairments may find the intervention taxing if they need to struggle to recall names of the people and places which have been important in their lives.”  (p.7) Often people with cognitive impairment or dementia are excluded from studies. [29-34] An exception to this trend is a small-scale study on people with new diagnosis of dementia (n=7) and their families (n=7) which suggests that Dignity Therapy is feasible, acceptable and potentially effective for older people with dementia. [35,36] Validation of PDI for use among people with dementia has not been reported.
Chochinov and colleagues have also developed The Patient Dignity Question (PDQ). This simple open-ended question “What do I need to know about you as a person to give you the best care possible?” can identify issues and stressors that may be important to consider when planning and delivering care and treatment. 
The Dignity Model
Chochinov and colleagues developed 'The Dignity Model', [23,28] a model of dignity in the care of the terminally ill where three major categories emerged from the qualitative analysis of dying patients’ perceptions of their sense of dignity:
- Illness-Related Concerns which describe the issues that derive from the illness itself that impinge or threaten to impinge on the person’s sense of dignity
- Dignity-Conserving Repertoire described under two major themes:
- Dignity-Conserving Perspectives - the person’s internally held qualities that may help to promote dignity
- Dignity-Conserving Practices - personal approaches or techniques used by people to increase or maintain their sense of dignity
- Social Dignity Inventory which refers to the quality of interactions with others that enhance or detract from one’s sense of dignity. This inventory refers to external sources or issues that enhance or detract from on a person’s sense of dignity.
The Dignity Model provides the basis of dignity-conserving care. [37,38,42]
While many factors can influence what a person considers dignified care, having priorities, preferences and values known and adhered to by health professionals is an important component of dignity-conserving care. [20,22] Dignity-conserving or dignity-supporting care comprises a broad range of care activities which include the relief of physical and psychological distress, help in maintaining independence, and the provision of a comfortable and homely environment. [5,6,9] Clear and honest yet compassionate and empathetic communication and considering the person as a ‘whole’ are also considered as essential aspects of this care. [5,6,9]
Rodríguez-Prat et al.  discuss the complex interrelationship of dignity, autonomy and personal identity. The authors note that the concepts of intrinsic and extrinsic dignity are important components of this interrelationship. The awareness of an internal or intrinsic sense of dignity can assist a person to maintain a positive view of themself in the face of illness or disability. External dignity or a sense of self based on autonomy and control of one’s circumstances can become an undermining force. For a person with a strong desire for autonomy, wanting control of the dying process may lead to a poor quality of life at end-of-life and a desire to hasten death.
Kane et al.  identify limited evidence (moderate to poor quality) to support that person-centred care interventions can improve QoL for people with chronic heart failure. Comparison across the interventions was difficult and three other studies in this systematic review showed little or no improvement in QoL.
Dignity Therapy (DT)
Dignity therapy (DT) emerged in 2002 and aims to conserve a dying person’s sense of dignity by addressing sources of psychosocial and existential distress. [12-14] Dignity Therapy provides the opportunity for a person to reflect on and share the moments that have shaped his or her life and to create a legacy document. [12-14] A Dignity Therapist uses 10 core questions to guide an interview which is audio-recorded. The recorded conversation is used as the basis for the creation of a written narrative which is then reviewed by the person. [12-14] The final legacy document is then presented to the person who may share it with family and friends. [12-14]
Dignity therapy has been shown to be well accepted. [12-14] People often report a high satisfaction and benefits for themselves and their families, including increased sense of meaning and purpose. [12-14] Small studies of dignity therapy for older people in residential aged care (not necessarily receiving palliative care) suggest that dignity therapy can raise levels of meaning of life, quality of life and spiritual well-being. However, an effect on lowering depression or distress has not been clearly demonstrated. [12-14] Residents report that they appreciate the insights that come from the attention given to them and the opportunity to reflect. [12-14] Even for those who pass a cognitive screening test, minor and major memory lapses can impair the therapy. [12-14] Family members of residents report that DT is a trigger for discussing feelings and beginning discussions and learning about elements of the older person’s life. [12-14] Some family members have expressed concern about the possibility that the therapy may be stressful for the older person or that the legacy document may create strain in family relationships. [12,13] Health professionals note that reading the legacy document of a resident/client in their care can have a positive effect on their satisfaction at work and how they assess and interact with that person.  Cultural norm and sensitivities may mean that DT is not accepted or appropriate. [12,13] The feasibility of DT for older people and older people at end-of-life is currently unclear. 
Quality of Life (QoL)
Quality of life is a term that does not have a distinct definition but is used to describe a person’s appreciation of the extent to which their needs, goals, expectations, standards and concerns are satisfied. [39,40] This will naturally be highly personal in the context of their culture and value systems and will change in response to changes in their life. In a healthcare setting, quality of life encompasses emotional, physical, material, and social wellbeing. [4,39,40]
Quality of life is explicitly included in the WHO definition of palliative care. [39,40,43] Quality of life in palliative care includes the concepts of compassionate care and of dying with dignity. [2,3] WHO have defined quality of life as “as an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.”  (p. 1405)
Quality of life includes the physical, social psychological and spiritual wellbeing of a person. [4,39,40] Health-related QoL (HRQoL) reflects how a person perceives their health condition affects their psychological wellbeing, physical function, social functioning and sense of fulfilment. [41,45] The broader term, QoL, takes into account other non-medical concepts, such as family, support systems and friends. [7,10,11,39]
Measuring quality of life
Numerous assessment instruments of quality of life exist. These include instruments designed to evaluate health-related quality of life in any group of patients; disease-specific measures designed to evaluate health-related quality of life in specific illness groups; and individualised measures which allow the inclusion of aspects of life that are considered to be important by individual patients. [37,38,40]
Most of these have been developed for assessing the impact of disease and its treatment in the ‘pre-palliative’ phases. Examples include the well-known generic instrument the Short Form Survey (SF-36) and the cancer-specific Functional Assessment of Cancer Therapy - General (FACT-G) and the European Organisation for Research and Treatment of Cancer Quality of Life of Cancer Patients Questionnaire (EORTC QLQ-C30). [39-41] The European Organisation for Research and Treatment of Cancer (EORTC) offers a range of quality of life questionnaires (QLQ) specific to numerous cancers, elderly cancer patients and certain aspects of quality of life and indicates whether the tool has been validated.
The instruments specific to palliative care include the EORTC QLQ-C15-PAL, the McGill Quality of Life Index, the Missoula-VITAS Quality of Life Index (MVQOLI), the Needs at the End-of-life Screening Tool (NEST), and the Quality of Life at the End of Life (QUAL-E), [39-41], McMaster Quality of Life Scale (MQLS), interRAI Palliative Care (interRAI PC), Modified Quality of Life Concerns in the End of Life Questionnaire (mQOLC-E).  In the assessment of residents requiring palliative care in aged care facilities (RACF), Hermans et al.  reviewed five comprehensive geriatric assessments (CGAs). Of these, the McMaster Quality of Life Scale (MQLS) was shown to have the strongest validity and reliability.
The interRAI Palliative Care (interRAI PC) was evaluated as the most comprehensive (covers all domains of the Guidelines for A Palliative Approach to Residential Aged Care (APRAC, 2006)) and demonstrated high inter-rater reliability yet required further psychometric testing for validity in the residential aged care setting. It assists individual care plans to be evaluated and adjusted and can improve the transfer of information between carers and health care settings.
Other tools such as Missoula-VITAS Quality of Life Index-Revised (MVQOLI-R) and the Modified Quality of Life Concerns in the End of Life Questionnaire (mQOLC-E) and Palliative Care Outcome Scale (POS) were shown to be valid. These tools were designed to assess the overall quality of life of people receiving palliative care and are especially helpful when palliative care is aimed at optimising the quality of life of the dying person. The mQOLC-E, the least comprehensive CGA, was shown to be a valid and reliable questionnaire to assess quality-of-life concerns of older residents in a RACF in the palliative phase. The MVQOLI-R can be used as a clinical tool to encourage communication about spiritual and psychosocial issues. The POS is a suitable instrument to assess not only respondents that are cognitively able to participate but also persons with moderate or severe dementia through the Integrated POS for Dementia (IPOS-Dem).
Both McDonald  and van Groenestijn et al.  acknowledge that in research pertaining to QoL, there exists a diversity of questionnaires and a lack of a standardised assessment tools. McDonald’s work acknowledges the difficulty in determining which aspect of QoL changes in response to a care intervention, and the degree to which this improvement is related to pain. 
Adoption and support of person-centred care at the organisational level has been shown to increase QoL for older people living with dementia in both long-term care homes and within the community. This ‘top down’ approach supports carers to gain the skills, knowledge, and attitudes of person-centred care, positively impacting on QoL and wellbeing on the people in their care.  Care planning and clear, respectful, and empathetic communication with the person, their family and carers can also contribute positively to QoL of the person receiving palliative care. [5,6,9,17] Quality of life can further be enhanced by the correct and timely assessment and management of physical symptoms (particularly pain), psychological symptoms (particularly anxiety and depression) and spiritual needs. [2,17,19] Pharmacological and nonpharmacological management of pain and anxiety are important particularly in the last days of life. 
Measuring quality of life for people with dementia
The cognitive and functional decline associated with dementia has a profound impact on the quality of life (QoL) of both the person living with dementia and their carer(s) and support network.  There are numerous tools that measure QoL in dementia. Some are generic, that is, they are designed to be used across all conditions or states of heath whilst the others are disease-specific, for example congestive heart failure, chronic kidney disease (CKD), diabetes, asthma, COPD, or dementia. The EQ-5D is a generic assessment tool which has been shown to be reliable, valid and feasible for use in dementia. 
These assessment tools can be completed by the person with early to mild dementia (self-reporting). With the inevitable decline in cognitive, behavioural and functional capacity, the assessment may be done using a proxy (proxy-reporting), most commonly informal or formal carers. [4,45,46] However, in this case the personal biases of a carer may influence results. 
Different tools assess different domains of ability: cognitive (e.g. orientation, language, memory, judgement, problem-solving, self-concept), functional (e.g. mobility, daily activities, self-care), physical (e.g. hearing, vision, pain), emotional (e.g. vitality, wellbeing, distress, anxiety, depression), and social (e.g. social relationships).  Missotten et al. suggest that, to assist person-centred care, a tool should ideally allow items to be scored relative to the personal values of the person being assessed. 
Missotten et al. included 18 QoL instruments specific to dementia in their concept analysis.  With dementia-related cognitive impairment, subjective reports by the person may be inaccurate. In these circumstances, carers can serve as health care proxies as they may be able to more accurately report person’s abilities. Of the 18 tools, eight were completed by a carer (i.e. proxy-rated) rather than the person living with dementia (i.e. self-rated). Five required a formal carer: CDQLP: Community Dementia Quality of Life Profile; QUALID: Quality of Life in Late-Stage Dementia; QLDJ: Quality of Life instrument for the Japanese elderly with Dementia; The Vienna List; QUALIDEM; whilst three used formal or informal carers: AAIQoL: Activity and Affect Indicators of Quality of Life; QoL-D: Quality of Life in (for) Dementia scale; ADRQL: Alzheimer's Disease-Related Quality of Life instrument.
Two were exclusively self-rated (BASQID: Bath Assessment of Subjective Quality of Life in Dementia and D-QoL: Dementia Quality of Life Instrument).
Six had a double version (DEMQOL, DEMQOL-proxy, DEMQOL-(Proxy-)U; OQOLD: Observing QOL in Dementia and OQOLD(A): Observing QOL in Dementia (for Dementia Advanced); QOLAS: Quality of Life Assessment schedule; CBS: Cornell-Brown Scale for Quality of Life in Dementia; DQI: Dementia Quality of life Instrument; QoL-AD: Quality of Life in Alzheimer's Disease).
Two came from the direct observation of behaviours (DCM: Dementia Care Mapping; OQOLD and OQOLD(A): Observing QOL in Dementia (for Dementia Advanced)). 
This review indicates that the ADRQL, QLDJ, BASQID, and QUALIDEM tools are the most robust clinical instruments.  The authors recommend that the choice of instrument should be made according to how well suited it is to the severity of the cognitive impairment of the person to be assessed and the setting in which it is being used. In terms of a definition of dementia-specific QoL, the authors suggest “the level of success reached by a person in the pursuit of happiness in each domain of their life, these being prioritized according to their preferences.” (p. 1258) The BASQID tool aligns with this definition. The authors suggest that assessments include “an activity, whatever it may be, but one that is personalized and meaningful for the person”. (p. 1258) Over time with a decrease in the person’s fields of interest, the number of relevant items in the assessment tool may decrease. This decrease may indicate the person’s capacity to adapt if despite the decrease in fields of interest, QoL does not decrease within the domains that are still important to the person. 
Association between palliative care and people with life-limiting conditions
A systematic review by Kavalieratos et al.  includes 43 randomised-controlled trials (RCTs). These RCTs involved almost 13,000 older people (mean age 67 years) and were conducted in ambulatory and home-based settings but did not include residential aged care facilities (RACFs). A narrative synthesis was conducted on all RCTs while QoL as an outcome was included in a meta-analysis. In this meta-analysis, palliative care interventions were associated with improvements in a person’s QoL and symptom burden. The analysis, when restricted to trials of low risk of bias, showed that palliative care was associated with improved QoL at the 1- to 3-month follow-up, and at the 4- to 6-month follow-up. Findings for carer QoL were mixed.
The role of companion and therapy animals in the well-being of people receiving palliative care
Companion animals are animals that play a part in a person’s life before palliative care and differ from animals used as a form of therapy and introduced into the delivery of care (animal assisted therapy (AAT).  The role of both companion animals and AAT in the well-being of people receiving palliative care is discussed in one literature review by MacDonald and Barrett.  As noted above, well-being is a recognised and related component of quality of life and dignity. Two of only four primary studies conducted by Engelman and Kumasaka et al. focused on AAT and suggested that therapy animals may be linked to a positive impact (mood, symptom burden) for the person receiving palliative care. However, caution should be applied in interpreting these results as the sample size was very small (n=20). Although these do not challenge what could be described as a commonly held openness to or acceptance of the benefits of a human-animal bond, these studies added very little support due to poor methodology. This review does include a potentially useful clinical consideration in that a companion animal may also become a source of distress or worry for the person receiving palliative care due to separation from the companion animal and uncertainty of continuity of care for the animal.
- Future studies may determine the most valid and reliable QoL questionnaire or assessment tool to assist the depth of understanding of QoL.
- Only one systematic review considers dignity therapy for older adults in palliative care. More studies will help us understand the feasibility of dignity therapy for older adults and how it can be culturally responsive.
- There is a need for research to use more standardised measures of patient-reported outcomes to evaluate the most effective components of palliative care. Attention could also be turned to the carers and families of older people receiving palliative care as very little is known of how best to support them.
- We know little about how others influence the wellbeing and self-perception of a person at the end of their life.
- A person’s desire for control of the dying process may erode their quality of life. Better understanding of intrinsic and extrinsic dignity may improve quality of life for older Australians at end-of-life and for the people who care for them.
- Future research could provide greater emphasis to the psychometric properties and effectiveness of comprehensive geriatric assessments (CGAs).
- Comprehensive geriatric assessments (CGAs) not specialised in palliative care could be investigated to determine how these assessment tools could enhance the early detection of the need for palliative care and signal the need for palliative care CGAs to be used.
- For assessment of QoL for people with dementia ,
- more research is still needed to compare generic and disease-specific HRQoL instruments to support the use of a generic rather than a disease-specific tool
- the impact of informal and formal caregiver HRQoL on their rating of the patient HR-QoL needs to be better understood to improve the interpretation of results.
Page updated 14 October 2021