Dignity and Quality of Life

What we know

Dignity and quality of life are important constructs in health as they are useful reminders the importance of addressing social, spiritual, psychological and medical needs of the people in care and being responsive, inclusive and sensitive to personal, cultural and linguistic diversity. Both concepts are reflected in the Aged Care Quality Standards which apply to all Australian aged care services.

Quality of life in palliative care includes the concepts of compassionate care and of dying with dignity. 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. Evidence suggests that dignity therapy is beneficial for older people at end of life and for their family and carers.

Go to Evidence Summary

What can I do?

Remember that Aged Care Quality Standards Standard 1 Consumer Dignity and Choice states 'Being treated with dignity and respect is essential to quality of life.' The Standard articulates the importance of holistic care which is the basis of good palliative care.

You can use the Patient Dignity Question (PDQ), a simple, open-ended question: 'What do I need to know about you as a person to give you the best care possible?', to identify issues and stressors that may be important to consider when planning and delivering a person’s care and treatment.

You can use the Patient Dignity Inventory to understand how a person in your care is coping and to identify any concerns.

To measure symptoms and support needs of a person in your care, you can use The Palliative care Outcome Scale (POS) - available in 11 languages.

You may want to use the EORTC QLQ-C15-PAL questionnaire to assess the quality of life of someone in palliative cancer care.

Remember that equipment services and support can enable people to engage and remain independent, and this will support their dignity.

When providing care with intimate hygiene, it is important to

respect the person’s care preferences, allowing the person to maintain independence with self-care where possible, physically and cognitively
maintain normal routines and habits
maintain privacy boundaries and attention to the tone of care provision
understand that the person may not want this type of care provided by a close family member.

Pain can compromise quality of life. You can use the following tools to assess pain:

Pain scales in multiple languages from the British Pain Society – these scales aim to assess the intensity of pain, how distressing the pain may be and how much the pain interferes with daily activities, and how much relief of pain has been achieved through treatment of pain
VNRS or Pain Thermometer
The Modified Residents Verbal Brief Pain Inventory (M-RVBPI) (112kb pdf) is recommended to assess pain in residents able to communicate
The Abbey Pain Scale (125kb pdf) or the Pain Assessment in Advanced Dementia Scale (PAINAD) are recommended to assess pain in residents with severe dementia or cognitive impairment - See Pain in Residential Aged Care Facilities: Management strategies (requires payment but Executive summary is freely available)

palliAGED Tip sheets

Tips for Careworkers:
Person-Centred Care

Tips for Nurses:
Person-Centred Care (313kb pdf)

What can I learn?

Read:

palliAGED In Focus news to learn more Aged Care Quality Standard 1: Consumer dignity and choice.
Rodríguez-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.
Kennedy G. The Importance of Patient Dignity in Care at the End of Life. Ulster Med J. 2016;85(1):45-48.
Johnston B, Larkin P, Connolly M, Barry C, Narayanasamy M, Ostlund U, et al. Dignity-conserving care in palliative care settings: An integrative review. Journal of Clinical Nursing. 2015;24(13-14):1743-72.
Johnston B, Lawton S, McCaw C, Law E, Murray J, Gibb J, et al. Living well with dementia: enhancing dignity and quality of life, using a novel intervention, Dignity Therapy. Int J Older People Nurs. 2016;11(2):107-20.
Morgan DD, Marston C, Barnard E, Farrow C. Conserving dignity and facilitating adaptation to dependency with intimate hygiene for people with advanced disease: A qualitative study. Palliative Medicine. 2021;35(7):1366-77
the RACGP Silver Book section on Person-centred care.

Watch Harvey Chochinov present Dignity Therapy (Canadian Virtual Hospice).

What can my organisation do?

Providing a homely or personalised physical environment may be of great comfort particularly if it allows family or friends to stay close to an older person receiving palliative care.

Use these suggestions to create a dementia-friendly environment (186kb pdf) for people receiving care at home or in a residential aged care facility.

Use the Australian Commission on Safety and Quality in Health Care guide on Identifying goals of care which includes a description of goal setting tools.

Provide communication skills training for staff so that staff feel more attuned to recognising the person’s needs and confident in talking to patients, families and carers and addressing their emotional and social needs.

Check out the NDS Active Listening program for staff education (1.44MB pdf) to establish in-house training in communication

Consider including a Goals of Care Plan in each admission process as part of a defined management plan. The management plan should also include a plan for regular review of the goals of care, and the review under certain conditions (such as but not exclusively a hospital admission, notable functional decline or incomplete recovery from an infection or a fall…).

Inclusion of pastoral care within palliative care networks is important in attending to the spiritual needs of palliative care recipients – refer to the National Guidelines for Spiritual Care in Aged Care.

Creation of a lending facility for equipment such as mobility aids, hearing loops and electronic equipment e.g. tablets / computers, may assist socially isolated palliative care recipients.

Consider the Compassionate Community movement.

Ensure Advance Care Plans are readily accessible in notes and records, so care provision is in line with the person’s wishes and preferences, which can provide both quality and dignity at the end of life.

Page updated 15 October 2021