Dignity and Quality of Life
X
GO

Dignity and Quality of Life

Key Messages

  • Dignity and quality of life (QoL) are complex and subjective and will each mean different things to different people. They include physical, social, psychological and spiritual well-being, and feelings of value and self-worth. [1-3]
  • Both dignity and QoL are reflected in the Aged Care Quality Standards which apply to all Australian aged care services. [4]
  • Quality of life (QoL) is an important component of the social, psychological, psychiatric, and spiritual aspects of palliative care. [5,6] Quality of life in palliative care includes the concepts of compassionate care and of dying with dignity. [6-8]
  • In life-limiting illness, anxiety, depression, and pain can erode QoL [6] and palliative care has been shown to be associated with improvements in QoL. [9,10]
  • Numerous tools can help to measure quality of life for older people including those living with dementia. [2,3,11-13]
  • Evidence suggests that dignity therapy is beneficial for older people at end-of-life and for their family and carers. [14-16]
  • Dignity-supporting or dignity-conserving 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. [8,17,18]

Background

Dignity and quality of life (QoL) are complex and subjective and will each mean different things to different people. They include physical, social, psychological and spiritual well-being, and feelings of value and self-worth. [1-3] 

Dignity is related to personal identity and feelings of value and self-worth. [5] Dignity is defined as the quality or state of being worthy, honoured or esteemed. [12,13] 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. [12,13]

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. [1,2] This will naturally be highly personal in the context of their culture and value systems and will change in response to changes to their situation. In a healthcare setting, quality of life encompasses emotional, physical, material, and social wellbeing. [1] Quality of life in palliative care includes the concepts of compassionate care and of dying with dignity. [7,8,12,17,19] Compassion and compassionate care have particular relevance to the psychological and spiritual issues at the end-of-life and can be important in the appeasement of suffering. [7]

Evidence Summary

Quality of life (QoL) is recognised by The World Health Organization (2020) recognises the role of palliative care in improving quality of life: "Palliative care improves the quality of life of patients and that of their families who are facing challenges associated with life-threatening illness, whether physical, psychological, social or spiritual. The quality of life of caregivers improves as well." [20] 

Both dignity and QoL are reflected in the Aged Care Quality Standards which apply to all Australian aged care services. [4] 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 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.

In life-limiting illness, anxiety, depression, and pain can erode QoL. [6] Palliative care has been shown to be associated with improvements in QoL and symptom burden of people receiving palliative care. [9,10,20] However, outcomes for carers are inconclusive and poorly represented in high-quality literature. [9,10]

The Patient Dignity Inventory (PDI) is a measurement instrument that covers 25 potential patient concerns that can help clinicians to detect and monitor end-of-life dignity-related distress. [13,21] The PDI has been shown to be a valid and reliable instrument in palliative care. [21] 

Dignity therapy is a brief individualised psychotherapy which offers people an opportunity to reflect on issues that are important to them or other things that they would like to recall or transmit to others. [14-16] Dignity therapy, developed in 2002, has been shown to be well-accepted by older adults at the end of their life and for their family and carers. [14-16] Evidence suggests that dignity therapy can raise levels of meaning of life, quality of life and spiritual well-being of residents in aged care. However, an effect on lowering depression or distress has not been clearly demonstrated. [14-16]

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-supporting care. [22,23] Dignity-supporting or dignity-conserving 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. [8,18] Clear and honest yet compassionate and empathetic communication and considering the person as a ‘whole’ are also considered as essential aspects of this care. [8,17,18]

Numerous assessment instruments of quality of life exist. [2] These are discussed more fully in the Evidence Synthesis. 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 of the people in their care. [24]

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. [25] There are numerous tools that measure QoL in dementia and these are discussed more fully in the Evidence Synthesis. In choosing the best tool, its suitability to the severity of the cognitive impairment of the person to be assessed and the setting in which it is being used are important considerations. [11]

Quality Statement

Overall, the evidence (from guidelines, systematic reviews (SRs), integrative reviews and a narrative review) is of good to high quality.

 

Page updated 13 October 2021
 

  • References

  • About PubMed Search

  1. Kaasa S, Loge JH. Quality of life in palliative care: principles and practice. In: Cherny N, Fallon M, Kaasa S, Portenoy RK, Currow DC, editors. Oxford Textbook of Palliative Medicine. Oxford, UK: Oxford University Press; 2015.
  2. Radbruch L, Jaspers B. Quality of Life. In: MacLeod RD, Van den Block L, editors. Textbook of Palliative Care. Cham: Springer International Publishing; 2019. p. 17-28.
  3. Landeiro F, Mughal S, Walsh K, Nye E, Morton J, Williams H, et al. Health-related quality of life in people with predementia Alzheimer's disease, mild cognitive impairment or dementia measured with preference-based instruments: a systematic literature review. Alzheimers Res Ther. 2020 Nov 18;12(1):154. doi: 10.1186/s13195-020-00723-1.
  4. Aged Care Quality and Safety Commission. Guidance and Resources for Providers to support the Aged Care Quality Standards. Canberra: Aged Care Quality and Safety Commission; 2018.
  5. Rodriguez-Prat A, Monforte-Royo C, Porta-Sales J, Escribano X, Balaguer A. Patient Perspectives of Dignity, Autonomy and Control at the End of Life: Systematic Review and Meta-Ethnography. PLoS One. 2016 Mar 24;11(3):e0151435.
  6. van Groenestijn AC, Kruitwagen-van Reenen ET, Visser-Meily JM, van den Berg LH, Schroder CD. Associations between psychological factors and health-related quality of life and global quality of life in patients with ALS: a systematic review. Health Qual Life Outcomes. 2016 Jul 20;14(1):107.
  7. Sinclair S, Norris JM, McConnell SJ, Chochinov HM, Hack TF, Hagen NA, et al. Compassion: a scoping review of the healthcare literature. BMC Palliat Care. 2016;15:6.
  8. Guo Q, Jacelon CS. An integrative review of dignity in end-of-life care. Palliat Med. 2014 Jul;28(7):931-40.
  9. Kavalieratos D, Corbelli J, Zhang D, Dionne-Odom JN, Ernecoff NC, Hanmer J, et al. Association between palliative care and patient and caregiver outcomes: A systematic review and meta-analysis. JAMA. 2016 Nov 22;316(20):2104-14.
  10. McCusker M, Ceronsky L, Crone C, Epstein H, Greene B, Halvorson J, et al. Palliative care for adults. Bloomington (MN): Institute for Clinical Systems Improvement (ICSI); 2013 Nov.
  11. Missotten P, Dupuis G, Adam S. Dementia-specific quality of life instruments: a conceptual analysis. Int Psychogeriatr. 2016 Aug;28(8):1245-62. doi: 10.1017/S1041610216000417. Epub 2016 Mar 22.
  12. Best M. Dignity in Palliative Care. In: MacLeod RD, Van den Block L, editors. Textbook of Palliative Care. Cham: Springer International Publishing; 2019. p. 701-11.
  13. Chochinov HM, McClement SE, Kredentser MS. Dignity and palliative end-of-life care. In: Cherny N, Fallon M, Kaasa S, Portenoy RK, Currow DC, editors. Oxford Textbook of Palliative Medicine. Oxford, UK: Oxford University Press; 2015.
  14. Martínez M, Arantzamendi M, Belar A, Carrasco JM, Carvajal A, Rullán M, et al. ‘Dignity therapy’, a promising intervention in palliative care: A comprehensive systematic literature review. Palliat Med. 2017 Jun;31(6):492-509.
  15. Bentley B, O'Connor M, Shaw J, Breen L. A Narrative Review of Dignity Therapy Research. Aust Psychol. 2017 Oct;52(5):354-62.
  16. Fitchett G, Emanuel L, Handzo G, Boyken L, Wilkie DJ. Care of the human spirit and the role of dignity therapy: a systematic review of dignity therapy research. BMC Palliat Care. 2015 Mar 21;14:8. doi: 10.1186/s12904-015-0007-1. eCollection 2015.
  17. Johnston B, Larkin P, Connolly M, Barry C, Narayanasamy M, Ostlund U, et al. Dignity-conserving care in palliative care settings: An integrative review. J Clin Nurs. 2015 Jul;24(13-14):1743-72.
  18. Ostlund U, Brown H, Johnston B. Dignity conserving care at end-of-life: a narrative review. Eur J Oncol Nurs. 2012 Sep;16(4):353-67.
  19. Australian Commission on Safety and Quality in Health Care (ACSQHC). National Consensus Statement: essential elements for safe and high-quality end-of-life care. Sydney, Australia: ACSQHC; 2015.
  20. World Health Organization (WHO). Palliative Care. Geneva: WHO; 2020 [updated 2020 Aug 5] [cited 2021 Oct 14].
  21. Chochinov HM, Hassard T, McClement S, Hack T, Kristjanson LJ, Harlos M, Sinclair S, Murray A. The patient dignity inventory: a novel way of measuring dignity-related distress in palliative care. J Pain Symptom Manage. 2008 Dec;36(6):559-71. doi: 10.1016/j.jpainsymman.2007.12.018. Epub 2008 Jun 24.
  22. Evans CJ, Ison L, Ellis-Smith C, Nicholson C, Costa A, Oluyase AO, et al. Service Delivery Models to Maximize Quality of Life for Older People at the End of Life: A Rapid Review. Milbank Q. 2019 Mar;97(1):113-175. doi: 10.1111/1468-0009.12373.
  23. Sellars M, Chung O, Nolte L, Tong A, Pond D, Fetherstonhaugh D, et al. Perspectives of people with dementia and carers on advance care planning and end-of-life care: A systematic review and thematic synthesis of qualitative studies. Palliat Med. 2019 Mar;33(3):274-290. doi: 10.1177/0269216318809571. Epub 2018 Nov 8.
  24. Chenoweth L, Stein-Parbury J, Lapkin S, Wang A, Liu Z, Williams A. Effects of person-centered care at the organisational-level for people with dementia. A systematic review. PLoS One. 2019 Feb 22;14(2):e0212686. doi: 10.1371/journal.pone.0212686.
  25. Landeiro F, Walsh K, Ghinai I, Mughal S, Nye E, Wace H, et al. Measuring quality of life of people with predementia and dementia and their caregivers: a systematic review protocol. BMJ Open. 2018 Mar 30;8(3):e019082. doi: 10.1136/bmjopen-2017-019082.

Dignity and quality of life

Definitions

Quality of life: Mesh 

A generic concept reflecting concern with the modification and enhancement of life attributes, e.g., physical, political, moral, social environment as well as health and disease.

Caresearch

The goal of palliative care is to provide comfort. It also helps to maintain the highest possible quality of life. The term ‘quality of life’ is used a lot. It will mean different things to different people.

Quality of life often includes:

  • being comfortable and pain free

  • being able to socialise or spend time with loved ones

  • having as much independence as possible

  • not feeling you are a burden

  • feeling emotionally well.

Search

(personhood[majr] OR humanism[majr] OR quality of life[majr] OR dignity[ti] OR quality of life[ti])