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Promoting quality palliative care since 1991

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dying2learn; mooc; questions about death and dying

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Finding answers to questions about death and dying. Birth and death are something we will all have to cope with. But when it comes to the latter, we seem reluctant to think about, talk about, and plan for it.

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Waiting Room Revolution | A Podcast for those facing serious illness.

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The Waiting Room Revolution is a podcast for anyone or their families who is facing serious illness.

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Promoting quality palliative care since 1991

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Plan well for your end of life. We work with individuals, organisations and communities to improve how people in Australia die, care and grieve.

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Australia and New Zealand "A city is not merely a place to work and access services but equally a place to enjoy support
in the safety and protection of each other's company, in schools, workplaces, places of
worship and recreation, in cultural forums and social networks anywhere within the city's
influence, even to the end of our days" .
Compassionate city charter, A Kellehear
Welcome!

Compassionate Communities Network aims to promote and integrate social approaches to dying, death and bereavement in the everyday life of individuals and communities.

We do this by:

identifying and promoting leading practices

leading and advocating for practices to be embedded in policy

encouraging, strengthening and establishing partnerships that support community capacity building and resilience

furthering research in our culturally diverse communities

creating healthy end of life settings and environments

We are an informal group, actively working to promote the principles of public health palliative care. The Compassionate Communities Network is open to everyone who is interested in social approaches to end of life support.

We are currently formalising our linkage as an Australian/New Zealand chapter member of Public Health Palliative Care International. The development of this national compassionate communities network will be ratified at the 6th International Public Health Palliative Care Conference.

There is a growing movement in Australia and New Zealand and we invite you to be a part of it.

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Australia and New Zealand "A city is not merely a place to work and access services but equally a place to enjoy supportin the safety and protection of each other's company, in schools, workplaces, places ofworship and recreation, in cultural forums and social networks anywhere within the city'sinfluence, even to the end of our days" .

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The SPICT™ Tool is now available as a free app on iOS for iPhone and iPad, and as an app for Android – SPICT-App.All users are responsible for ensuring that they use the current version of S…

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Diverse Populations - Diversity - Community

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Learn about groups with specific needs. Here you can learn more about some of the diverse populations in Australia and why palliative care matters for them.

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Culturally-Inclusive Aged Care Practice Guides

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Culturally-Inclusive Aged Care Practice Guides

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Practice Guides set out key considerations, actions and resources that can support aged care providers to deliver inclusive services to people from culturally and linguistically diverse backgrounds. While the Inclusive Service Standards provide a framework for aged care providers to embed a systemic and holistic approach so that their services are welcoming, safe and accessible for everyone, the Practice Guides are intended to be used by managers and staff and inform direct service provision. It is vital that aged care services take into account and address cultural and linguistic need of individual consumers.

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Practice Guides set out key considerations, actions and resources that can support aged care providers to deliver inclusive services to people from culturally and linguistically diverse backgrounds.

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Diverse Population Groups

ELDAC organisational resources to support inclusive end of life care:

Older Australians are diverse

Australia is a diverse nation. Australians identify with more than 300 ancestries, speak more than 400 languages (including Aboriginal and Torres Strait Islander languages) and more than three million Australians speak a language other than English at home. Many older Australians speak little or no English, and may adhere to diverse spiritualities or faiths.

According to the ABS (2018), of Australia's more than 25 million population:

Over 124,000 older individuals identify as Aboriginal and/or Torres Strait Islander, and nine in ten Aboriginal and Torres Strait Islander individuals over 55 have a long-term health condition (ABS, 2016).

Almost 19,000 older Australians are at risk of, or are experiencing homelessness, and one in six homeless people are aged 55 and over (ABS, 2016).

Approximately 11% of the Australian population identify as lesbian, gay, bisexual, transgender or intersex (LGBTI) (Department of Health, 2019).

More than 500,000 Australians are care leavers.

More than 201,000 older adults aged 65 years and above receive a pension from the Department of Veteran Affairs, representing about 1.0% of the whole Australian population (ABS, 2017).

One in seven Australians are currently aged 65 and over (ABS, 2016). There are 3.8 million people in this group, of which:

One third were born overseas.

One in five are from Culturally and Linguistically Diverse (CALD) backgrounds.

One in ten lives with cognitive impairment or dementia.

One in three older carers are primary carers.

Older Australians may live in rural and remote areas, and may be socially or financially disadvantaged.

When caring for an older person, it's important to remember that the needs of each person, even for those within a specific population group, will vary considerably.

Diversity exists both within and across groups

Older Australians are from many different backgrounds, so each person will express their identity in different ways. Being part of a group with others from the same background can help to connect people, but diversity within groups and across groups also exists. This is called 'intersectionality'. Many people may not feel they belong to any group. It's for this reason that health professionals and care workers need to focus not only on one type of diversity, but on multiple types all at once.

Intersectionality considers a person's many characteristics and how they relate to one another to create their identity. These characteristics might include:

gender

ethnicity

cultural background

visa status

language spoken

socio-economic status

disability

sexual orientation

religion

age

generation

geographical location

Many of these characteristics may increase an individual's risk of discrimination, and the feeling that they are not represented or do not belong. Intersectionality helps us to consider how these characteristics might build on each other to make it difficult for an individual to access services (e.g. health care) and how this might increase their risk (e.g. of poor health, isolation and other related problems). Individuals who fall under multiple forms of minority group status are among the most vulnerable.

Many people have experienced negative situations as a direct result of their characteristics and may be carrying these memories and feelings into their interactions with others. It's important for health professionals and care workers to ask older Australians about their preferences and concerns about their care, and to consider how their individual needs can be met by the organisation, service provider, carer and family. This is essential especially at the end of life.

The more intersectionality characteristics and experiences a person has, the more likely they are to experience discrimination and disadvantage. There are many different characteristics that can increase a person's risk of intersectional disadvantage, including:

pre-migration

migration

racism

ableism

trauma

assault

violence

fear

distrust

colonisation

exclusion

oppression

prejudice

discrimination

disadvantage

disempowerment

isolation

disengagement

misunderstanding

ignorance

ineligibility

invisibility

sexual

intersex

homophobia

biphobia

transphobia

sexism

childhood

family

class

economic

illiteracy

faith-based

Being aware and considering how these characteristics affect an older person is important. For example, consider how many types of discrimination an older lesbian woman of colour may deal with (gendered, racial, sexist, homophobic and ageist). These characteristics and experiences may make it difficult for many older Australians to access the information, care and support they need.

When providing care to an older Australian, it's good practice to consider how the individual's characteristics and experiences have shaped the way they relate to their carers and their care. A person's unique social and cultural background can influence how they think about, speak about (or not speak about), and respond to death, dying, palliative care and losing someone close to them.

There are differences between people who share the same characteristics, and while people may look similar on the surface, it's important that you don't make assumptions about the care a person may need or want based on their physical or social characteristics. Instead, it is best practice to ask each person about their beliefs and preferences. Meaningful Ageing Australia's 'See Me. Know Me.' campaign is founded on the idea of making identities visible, and provides a good example of how unique and varied the life experiences of older Australians are. We all deserve inclusion, care and support which is tailored to our individual needs.

Under the Aged Care Act 1997, people with special needs are those who identify with or belong to one or more of the following groups:

people from Aboriginal and Torres Strait Islander communities;

people from non-English speaking (culturally and linguistically diverse) backgrounds;

people who live in rural or remote areas;

people who are financially or socially disadvantaged;

people who are veterans, including the spouse, widow or widower of a veteran;

people who are homeless, or at risk of becoming homeless;

people who are care leavers; and/or

people from Lesbian, Gay, Bisexual, Transgender and Intersex communities.

This 'special needs' status recognises that people from these groups may find it difficult to access information and services appropriate to their needs.

The ELDAC website can help you to care for people from these population groups, as well as carers, people with dementia, and those with particular spirituality and faith beliefs. Click on specific pages to learn more about aged care and end of life for each population group.

The following related resources will also be useful for you to consider when providing care to meet the unique needs of older Australians.

The Aged Care Diversity Framework
Launched in December 2017, the Aged Care Diversity Framework provides a guide for appropriate care. Its vision isto create an aged care system where older Australians, regardless of their social, cultural, linguistic, religious, spiritual, psychological, medical and care needs and life experiences, can access respectful, appropriate, fair, inclusive and sensitive care. The framework takes an empathetic, individual human rights based approach in line with key World Health Organization principles.

Aged Care Diversity Framework action plans
Action plans have been developed under the Aged Care Diversity Frameworkto help aged care service providers to address specific barriers and challenges faced by older people.

They are:

Find out more about the Aged Care Diversity Framework action plans.

Aged Care Quality Standards
Diversity is woven through the Aged Care Quality Standards to ensure the delivery of safe and inclusive services to people with diverse needs and life experiences. Standard 1 relates to valuing the identity, culture and diversity of each consumer, to deliver culturally safe care and services. Illustrated storyboard examples of consumer dignity and choice (pdf, 4MB), and dignity of risk (pdf, 4.4MB) can help aged care staff to better apply the Quality Standards in their day to day work.

Diversity considerations in palliative care

Living and dying in comfort is a basic human right. Older diverse Australians often face barriers in accessing palliative care services. The Department of Health and Aged Care has released an exploratory analysis of barriers to palliative care summary policy paper, which contains approaches for improving access and quality of care for vulnerable populations in Australia. The Department of Health and Aged Care has also released an associated literature review of barriers to palliative care for diverse Australians. Organisations and services and those who work in them need to consider and respond to individual need, especially at the end of life. How people think about death, dying, and end of life differs and there is no 'one-size-fits-all' approach. There are many ways to help people with palliative needs feel welcome, heard and supported. One way to be flexible and responsive to diversity is to adopt person-centred and family-inclusive approaches to care. This includes 'families of choice'. Palliative care models should aim to deliver care that is both culturally appropriate and culturally safe. As health professionals and care-workers, adopting tailored care plans based on the specific needs of each individual is recommended. Spend time listening and learning about your clients and residents, and ask them about their unique preferences.

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Older Australians are from many different backgrounds, so each person will express their identity in different ways. Older diverse Australians often face barriers in accessing palliative care services.

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Healing Foundation - Working with Stolen Generations

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Healing Foundation - Working with Stolen Generations

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New resources for GP, dental and aged care services

GPs, dentists and aged care staff will be better placed to support Stolen Generations survivors following the launch of new resources by The Healing Foundation. The resources were launched recently by the Minister for Indigenous Australians, The Hon Ken Wyatt AM MP at Parliament House in Canberra.

The Stolen Generations Factsheets were developed in collaboration with Stolen Generations survivors and peak bodies including the Royal Australian College of General Practitioners, the Australian Dental Association, Aged & Community Services Australia and the Aged Care Industry Association.

Interacting with aged care staff, GPs, dentists and other services is often difficult for Stolen Generations survivors, as everyday events can trigger the original trauma of forced removal, particularly if a situation brings back the lack of control Stolen Generations survivors experienced when they were taken from their families.

These Factsheets provide practical tips, tailored for GPs, dentists and aged care workers in providing support to Stolen Generations survivors.

Fact sheets for hospitals, allied health professionals and disability services are in development.

Read the media release here

"The fact sheets mean that we do not have to repeatedly tell our stories, or have to explain ourselves or be questioned why to be able to get the care we need."

- Ian Hamm, Stolen Generations Reference Group member

Download the fact sheets here

Trauma-aware, healing-informed practice

Trauma-aware, healing-informed practice is a strength-based approach to healing that is guided by a shared understanding of, and responsiveness to, the impacts of trauma. It prioritises cultural, spiritual, physical, psychological, and emotional safety but does not avoid addressing issues of high importance that are likely to be sensitive and triggering of trauma responses. Service providers need to be highly skilled in managing the likely effects of potentially triggering conversations and in working towards empowering people who access their services through upskilling and increasing understanding. Working in ways that there is no risk for 'no further harm'.

Download the snapshots here

"This new resource provides essential context and useful tools to assist GPs to identify and understand the impacts of trauma for their patients. These are principles of good clinical practice, which is beneficial for all patients."

- Associate Professor Peter O'Mara, The Royal Australian College of General Practitioners

READ: This new report outlines key findings from the Kerriri Healing Forum. We acknowledge the representatives from... https://t.co/jLbVz0u6no

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Message: Aboriginal and Torres Strait Islander people should be aware that this website may contain images, voices and names of people who have passed away.

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The Healing Foundation is currently updating this website with new data from the Make Healing Happen report. Please see the
full report for the most up-to-date data.

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Working with Stolen Generations | Healing Foundation

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GPs, dentists and aged care staff will be better placed to support Stolen Generations survivors following the launch of new resources by The Healing Foundation. The resources were launched recently by the Minister for Indigenous Australians, The Hon Ken Wyatt AM MP at Parliament House in Canberra.

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Palliative Care 11 Tips: LGBTIQ+ Health Australia

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Palliative Care 11 Tips: LGBTIQ+ Health Australia

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Palliative Care 11 tips Poster

Tips for health professionals that lead to more inclusive palliative care for LGBTIQ+ people.

Palliative Care week 2021 was a time to reflect and learn more about what palliative care is and why it is important.

LGBTIQ+ Health Australia will be shared tips for health professionals that lead to more inclusive palliative care for LGBTIQ+ people.
Access poster

ABOUT LGBTIQ+ Health Australia LGBTIQ+ Health Australia, (formerly the National LGBTI Health Alliance), is the national peak health organisation in Australia for organisations and individuals that provide health-related programs, services and research focused on lesbian, gay, bisexual, transgender, intersex and queer people and other sexuality, gender and bodily diverse (LGBTIQ+) people and communities. Dropping the "+" from our name only occurs within digital formats that do not allow mathematical symbols, such as within our domain name, handles and hashtags.

ACKNOWLEDGEMENT OF COUNTRY LGBTIQ+ Health Australia acknowledges the Traditional Owners of country throughout Australia, their diversity, histories and knowledge and their continuing connections to land and community. We pay our respects to all Australian Indigenous Peoples and their cultures, and to Elders of past, present and future generations.

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Tips for health professionals that lead to more inclusive palliative care for LGBTIQ+ people. Palliative Care week 2021 was a time to reflect and learn more about what palliative care is and why it is important. LGBTIQ+ Health Australia will be shared tips for health professionals that lead to more inclusive palliative care for LGBTIQ+ people.

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The PICAC Alliance is a unified national body comprising of each state and territory specific Partners in Culturally Appropriate Care (PICAC) funded organisations. The Alliance aims to be a voice and discussion conduit into information, training and resources to inform aged and community care services of today and tomorrow.

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The PICAC Alliance is a unified national body comprising of each state and territory specific Partners in Culturally Appropriate Care (PICAC) funded organisations. The Alliance aims to be a voice and discussion conduit into information, training and resources to inform aged and community care services of today and tomorrow.

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Talking End of Life with people with intellectual disability

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Talking End of Life with people with intellectual disability

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Talking end of life with people with intellectual disability (TEL). Online resource that shows you how to teach people with intellectual disability about end of life. It is designed for disability support workers but is also helpful for families, health professionals and educators.

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CALD Assist™ offers a simple and dynamic way for health care workers to communicate with patients from Culturally and Linguistically Diverse (CALD) backgrounds when an interpreter is not available.

Featuring phrases commonly used during basic care interactions translated and recorded in 10 common languages (plus English), CALD Assist™ facilitates basic care interactions to support patient care.

CALD Assist™ was developed by Western Health in partnership with the Commonwealth Scientific and Industrial Research Organisation (CSIRO) with support from Better Care Victoria, and with previous support from the Victorian Government Technology Innovation Fund.

The award winning CALD Assist™ app now includes COVID-19 screening questions to facilitate communication in COVID-19 Testing Clinics and screening of health service visitors and outpatients.

10 common languages: Arabic, Cantonese, Croatian, Greek, Italian, Macedonian, Mandarin, Serbian, Spanish and Vietnamese plus English

Over 200 phrases commonly used during basic care interactions translated and audio recorded

Phrases grouped into seven clinical specialties including Dietetics, Occupational Therapy, Physiotherapy, Podiatry, Speech Pathology, Nursing and COVID-19

Images and video to enhance communication between health care workers and their patients

Answer options to enable patients to respond to simple questions

Developed in collaboration with nursing staff, allied health clinicians, infectious diseases specialists, interpreters and patients

Now available for use on Apple and Android devices, including smartphones

To access CALD Assist, simply download for from the Apple App Store or Google Play.

For further information please contact [email protected]

EVALUATION TRIAL RESULTS

A 3 ½ month evaluation trial was conducted across 4 inpatient wards at Sunshine, Footscray and Williamstown Hospitals during 2017. Results from this trial include:

Interactions with patients from non-English speaking backgrounds were rated as more successful when the CALD Assist app was used by staff.

With use of the CALD Assist app, staff report of 'confidence' in patient's understanding increased.

The level of staff frustration was rated lower when the CALD Assist app was used to communicate with patients from non-English speaking backgrounds.

The majority of staff and patient participants believe the CALD Assist app is useful to communicate with patients from non-English speaking background.

Staff and patients were positive about using the CALD Assist app, and its functionality.

FREQUENTLY ASKED QUESTIONS

Does CALD Assist replace interpreter use?
No. CALD Assist is designed to assist communication during basic care interactions only, when it is not possible or practical to have an interpreter present.

How do I know that the phrases in CALD Assist are accurate?
All phrases in CALD Assist have been translated and independently checked by professional translators. Interpreters at Western Health have then also checked all phrases to ensure that they are accurate.

How do I download CALD Assist to my tablet or smartphone?
CALD Assist can be downloaded via the Apple App Store or Google Play for free.

Can CALD Assist be used on my smartphone?
Yes. CALD Assist may be used on either a smartphone or tablet device. A tablet device may be more appropriate to use with patients who are visually impaired

2018 iAwards Victoria Merit Certificate (Public Sector and Government)

2018 iAwards Pitchfest winner

2017 The Health Roundtable Innovations Award 'Improving the Continuum of Care'

2015 Health Informatics Society Australia, Branko Cesnik Award for Best Academic/Scientific paper

2015 Gold 'Improving health equality and closing the gap', Victorian Public Healthcare Awards

REFERENCES
Freyne, Jill; Bradford, Dana; Pocock, Courtney; Silvera, David; Harrap, Karen; Brinkmann, Sally. Developing digital facilitation of assessments in the absence of an interpreter: participatory design and feasibility evaluation with allied health groups. JMIR formative research. 2018; 2(1):e1.

Silvera, David; Pocock, Courtney; Bradford, Dana; Donnell, Andrea; Harrap, Karen; Freyne, Jill; et al. CALD Assist - Nursing: Improving Communication in the Absence of Interpreters. Journal of Clinical Nursing. 2018; 27(21-22):4168-4178.

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CALD Assist™ offers a simple and dynamic way for health care workers to communicate with patients from Culturally and Linguistically Diverse (CALD) backgrounds when an interpreter is not available. Featuring phrases commonly used during basic care interactions translated and recorded in 10 common languages (plus English), CALD Assist™ facilitates basic care interactions to support patient care.

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A number of government agencies have developed information and resources about Coronavirus (COVID-19) in different languages.

Read more

Online training is now available for the Inclusive Service Standards!

The Inclusive Service Standards were developed to assist aged care providers in the development and delivery of inclusive services to all consumers. The new training modules provide an introduction to each Standard, together with ideas on how you could implement them within your organisation.

Get the training

Does your aged care service or agency have bilingual staff? We invite you to register for our bilingual directories:

The Aged Care Services with Bilingual Staff Directory helps consumers and their carers find services where there are staff who speak their language.

The Bilingual Agency Staff Directory helps aged care providers to search for bilingual staff they can hire in order to match the language spoken by their consumers.

Registration is free of charge for all government approved aged care providers including CHSP, Home Care and Residential Aged Care.

Register your service

An Organisational Audit and Planning Tool has been added to the suite of resources on the Inclusive Service Standards. The tool sets out a series of performance measures designed to assist service providers to meet the Inclusive Service Standards. Using this tool organisations are able to review current practices against each measure, identify areas for improvement and undertake further planning and development.

Read more

A new practice guide has been published to assist aged care services to develop a policy for use of interpreter services for their organisation. The guide includes a sample policy template which can be adapted to suit the needs of individual organisations.

Read more

Latest News

All news

The Centre for Cultural Diversity in Ageing is pleased to launch 4 new online...

It is with great pleasure that we announce the appointm​ent of Lisa Tribuzi...

The Victorian Department of Health and Human Services has launched a series o...

The new Older Persons COVID-19 Support Line provides information, support and...

The Partners in Culturally Appropriate Care (PICAC) Alliance has produced a w...

Acknowledgements

Centre for Cultural Diversity in Ageing acknowledges and pays respect to the Wurundjeri people of the Kulin nation, on whose land this website was developed. We pay our respects to Aboriginal and Torres Strait Islander peoples, their ancestors and elders, both past and present and acknowledge their continuing connection to land, sea and community. We hope our work contributes to the wider project of respect and recognition between cultures in Australia. Centre for Cultural Diversity in Ageing receives project funding from the Australian Department of Health to administer the Partners in Culturally Appropriate Care (PICAC) program in Victoria.

36% of people aged 65 years and over in Australia were born overseas

1 in 3 people in aged care services were born overseas

In 2016 the median age of Australian-born people was 34 years compared to 59 years for Europe-born people

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Home | Centre for Cultural Diversity in Ageing

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A number of government agencies have developed information and resources about Coronavirus (COVID-19) in different languages. Read more Online training is now available for the Inclusive Service Standards! The Inclusive Service Standards were developed to assist aged care providers in the development and delivery of inclusive services to all consumers.

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The Centre for Culture, Ethnicity and Health has been contracted to manage and improve Health Translations. We are regularly reviewing our collection and improving your experience of the directory. We rely on your contributions. If you are aware of a multilingual health resource, produced in Australia, please register it here or let us know.

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The Centre for Culture, Ethnicity and Health has been contracted to manage and improve Health Translations. We are regularly reviewing our collection and improving your experience of the directory. We rely on your contributions. If you are aware of a multilingual health resource, produced in Australia, please register it here or let us know.

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There are palliative care services that will help you and your family.

Information is available in many commonly spoken languages in Victoria to help you understand more about the palliative care services that are available.

You can use 'end of life and palliative care' services to help you and your family as you approach the end of your life. You can receive care in hospital or in your home. There are palliative care services that can help you and your family according to your cultural or religious beliefs.

The 2011 Australian Census of Population and Housing shows that Victorians come from more than 200 countries, speak 260 languages other than English at home, and follow some 130 religious faiths. Over a quarter of Victorians were born overseas and nearly half were either born overseas or have a parent born overseas.

You may be from a culturally and linguistically diverse background, or be a refugee or asylum seeker, but you contribute enormously to Victoria's economic strength and social resilience.

Your community may have unique views, understandings and traditions about the end of life and loss, grief and bereavement. Healthcare workers come from a variety of different cultures and can provide care that is culturally appropriate for you.

Information in languages other than English

End of life and palliative care information in numerous languages is available on the . Languages include , , , , , , , , , , and and many more.

Topics include family and carer information, the last days of life, advance care planning and helping people with a life-limiting illness to live well.

Audio podcasts that you can listen to are available in numerous languages from the podcast library at .

Further information is also available from the .

Victoria's end of life and palliative care framework

A summary of Victoria's end of life and palliative care framework is available in , , , , , , , , and .

Further information is also available from the .

More Information

This page has been produced in consultation with and approved by:

This page has been produced in consultation with and approved by:

Content disclaimer

Content on this website is provided for information purposes only. Information about a therapy, service, product or treatment does not in any way endorse or support such therapy, service, product or treatment and is not intended to replace advice from your doctor or other registered health professional. The information and materials contained on this website are not intended to constitute a comprehensive guide concerning all aspects of the therapy, product or treatment described on the website. All users are urged to always seek advice from a registered health care professional for diagnosis and answers to their medical questions and to ascertain whether the particular therapy, service, product or treatment described on the website is suitable in their circumstances. The State of Victoria and the Department of Health shall not bear any liability for reliance by any user on the materials contained on this website.

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Palliative care for culturally and linguistically diverse communities | betterhealth.vic.gov.au

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There are palliative care services that will help you and your family. Information is available in many commonly spoken languages in Victoria to help you understand more about the palliative care services that are available. You can use 'end of life and palliative care' services to help you and your family as you approach the end of your life.

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COVID-19 (Coronavirus) and TIS National services

TIS National treats the health and wellbeing of its service providers (interpreters), clients and staff during the COVID-19 pandemic with the highest priority. We encourage our interpreters and clients to follow advice issued by the Department of Health and refer to the health department website in their state. The Department of Health provides regular detailed updates about COVIDSafe requirements. These include sanitation procedures, social distancing and the correct wearing of Personal Protective Equipment (PPE), including face coverings.

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Translating and Interpreting Service (TIS National)

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COVID-19 (Coronavirus) and TIS National services TIS National treats the health and wellbeing of its service providers (interpreters), clients and staff during the COVID-19 pandemic with the highest priority. We encourage our interpreters and clients to follow advice issued by the Department of Health and refer to the health department website in their state.

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Communication skills for serious illness - Vital Talk

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Communication skills for serious illness - Vital Talk

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VitalTalk makes communication skills for serious illness learnable. Our evidence-based trainings empower clinicians and institutions.

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Practical tools have been developed to support people working in health care as they address people's emotional needs. Some of these tools, such as the PDQ, can be adapted to any health care situation and setting. Others are designed for specific situations where patient dignity may be at risk.

This section introduces:

The Patient Dignity Question (PDQ): The key question everyone working in health care should consider when interacting with patients

The Patient Dignity Inventory (PDI): 25 potential concerns that should be regularly evaluated by health care providers

Therapeutic Interventions: Practices to address the 20 most common concerns identified in dignity research

Dignity Therapy for dying patients: A model for individualized psychotherapy, developed and piloted by the team and intended for people near end of life

The Patient Dignity Question (PDQ)

The PDQ is a simple, open-ended question: "What do I need to know about you as a person to give you the best care possible?"

Research has shown that this single question can identify issues and stressors that may be important to consider when planning and delivering someone's care and treatment. The intent is to reveal the "invisible" factors that might not otherwise come to light - and to identify these concerns early in the process.

For example, consider these scenarios:

A man arrives at the ER following a car accident. The impact of the airbag has broken some of his fingers and perhaps damaged some nerves. It's amazing that the man escaped the crash without more serious injuries, and he's lucky that the injury was to his left hand because he is clearly right-handed. His pain has been addressed.Even so, his level of agitation is completely over the top. He's carrying on as if his life is at risk.
An observer might assume the man is just hysterical and unbalanced...until someone asks the Patient Dignity Question. They learn that the man is a professional musician who has recently been asked to join one of the finest symphony orchestras in the world, the job he's dreamed of for a decade.

Suddenly the hospital staff has the key piece of information they need to deal with the distraught man in a constructive and sensitive way. This information will be valuable to the health care team, and to everyone who comes in contact with the patient through the entire course of treatment.

A woman stumbles through the doors of an inner-city hospital in soiled, ragged clothing. Her speech is slurred and she can't seem to keep her balance. She smells of beer and cigarettes.
It would be easy to assume the woman is merely drunk, but asking the Patient Dignity Question reveals that she is a diabetic who has lost her medication. Her blood sugar levels have reached dangerously high levels and she is at risk of falling into a coma.

When to ask the PDQ
The Patient Dignity Question is useful during every stage of care and treatment, such as:

During routine physicals

While carrying out diagnostic tests

When admitting patients

Before providing personal care

When considering forms of treatment or therapy

While discussing home care or long-term care arrangements

Not everyone needs to ask the question aloud, but everyone working in health care can consider the question as they reflect on the best way to deal with individuals and their families.

The intent is to get everyone in the health care community thinking about patients as unique human beings, rather than focusing only a specific illness or collection of symptoms.

The Patient Dignity Inventory (PDI)

The PDI is designed to give clinicians a broad overview or "snapshot" of how someone in their care is doing at any point in time.

Using a simple questionnaire, patients are asked to rate their current condition on the basis of 25 different indicators. Each question is based on empirical research into the most common factors influencing people's personal sense of dignity.

For each factor, the person indicates his/her degree of concern on a five-point scale, with 1 representing "not a problem" and 5 representing "an overwhelming problem."

The questionnaire is designed to be used by physicians, nurses, social workers, pastoral care providers - anyone attempting to evaluate how a person in their care is coping.

Therapeutic Interventions

Dignity research shows that people may be dealing with any or all of these factors as they interact with the health care system.

Click on the sub-themes to learn more about how the health care team can deal with each concern and strengthen patients' personal sense of dignity.

Therapeutic Interventions

Category

Themes and Sub-themes

Illness-Related Concerns

Symptom distress

Level of independence

The Patient's Perspectives and Practices

(The Dignity-Conserving Repertoire)

How the patient perceives the situation

What the patient does to ease the situation

Interactions with Others

(The Social Dignity Inventory)

Dignity Therapy for dying patients

Dignity Therapy was developed by Dr. Harvey Max Chochinov to assist people dealing with the imminent end of their lives.

This brief intervention can help conserve the dying patient's sense of dignity by addressing sources of psychosocial and existential distress. It gives patients a chance to record the me aningful aspects of their lives and leave something behind that can benefit their loved ones in the future.

During a 30 to 60 minute session, the therapist asks a series of open-ended questions that encourage patients to talk about their lives or what matters most to them. The conversation is recorded, transcribed, edited and then returned within a few days to the patient, who is given the opportunity to read the transcript and make changes before a final version is produced. Many choose to share the document with family and friends.

Advantages of Dignity Therapy
Concerns addressed by Dignity Therapy
Satisfaction with Dignity Therapy
Dignity Therapy questions
Dignity Therapy training
Feedback from patients and families

Advantages of Dignity Therapy

Dignity Therapy borrows elements from other supporti ve techniques, such as life review, logotherapy and existential psychotherapy. Unlike life review, Dignity Therapy is not a historical recounting of events - i t is a recounting of thoughts, ideas and events that are particularly relevant and meaningful for patients to recount and pass along to others. For most patients, it is an opportunity to share the moments that shaped their lives.

An important difference of Dignity Therapy is its grounding in sound research into dying patients' self-reported notions of dignity. It addresses the dying patient's need to feel that life has had meaning, and to do something for loved ones that will endure beyond the patient's own life. It also helps the patient get in touch with the accomplishments and experiences that have made them unique and valued human beings.

Initial trials suggest Dignity Therapy offers many advantages over other supportive approaches:

It is brief

Can be done at the bedside

Has the potential to favourably influence patients as well as their loved ones

Places less weight on interpretation, insight and "working through," and more emphasis on the meaning-enhancing process itself

How Dignity Therapy addresses end-of-life concerns

Dignity Therapy deals with emotional pain by targeting its source. The content, protocol and questions are all guided by the Dignity Model sub-themes.

The dying patient's strong need for "generativity" and "legacy" is the basis for the therapy. The therapy creates something that will transcend the patient's death and extend his or her influence across time. Capturing the patient's thoughts in written form is particularly effective because it increases the sense that whatever is said will be preserved for the future.

However, simply creating the legacy document is not enough. Those who practice Dignity Therapy must listen to these stories with genuine empathy, attentiveness, interest and sensitivity. Anything less will fail to meet the patient's need for treatment that is unconditionally positive and caring in tone.

The questions asked during Dignity Therapy are shaped by the Dignity-Conserving Perspectives and Aftermath Concerns that are identified in the Dignity Model. Each area of inquiry lets patients speak to issues that may reinforce their sense of personhood and sustain a sense of meaning, purpose and self-worth - thereby decreasing distress and improving their quality of life.

Satisfaction with Dignity Therapy

The first clinical trial using Dignity Therapy has overwhelmingly affirmed the value of this method for patients and families.
Patient satisfaction with Dignity Therapy

Satisfied or highly satisfied

91%

Helpful or very helpful

86%

Increased sense of dignity

76%

Increased sense of purpose

68%

Heightened sense of meaning

67%

Increased will to live

47%

Believed it had or would help their family

81%

Families' perceived benefits for the patient

Helped the patient

95%

Would recommend it to other patients

95%

Gave the patient a greater sense of dignity

78%

Heightened the patient's sense of purpose

72%

Helped the patient prepare for death

65%

Was an important as aspect of care for their deceased loved ones as anything else that was done on their behalf

65%

Reduced patient's suffering

43%

Benefits for the family

Helped surviving family during time of grief

78%

Will continue to comfort family

77%

Since the first trial, hundreds of patients have participated in Dignity Therapy in Canada, the United States, Australia, China, Japan, Denmark and Sweden. The most compelling evidence of its effectiveness is the stories of those who have experienced it.

Questions asked during Dignity Therapy

"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?"

"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, others)?"

"Are there words or perhaps even instructions 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?"

Reproduced with permission from the Journal of the American Medical Association.
Dignity Therapy training

Dignity Therapy training workshops are held regularly. To register, visit http://workshops.dignityincare.ca/default.asp.

For more information, please contact workshop@dignityincare.ca.

In their own words

Since the first trial, hundreds of patients have participated in Dignity Therapy in Canada, the United States, Australia, China, Japan, Denmark and Sweden. The most compelling evidence of its effectiveness is the stories of those who have experienced it.

Comments from patients

"I see (taking part in this study) as one reason why I am alive."

"It's helped bring my memories, thoughts and feelings into perspective instead of all jumbled emotions running through my head. The most important thing has been that I'm able to leave a sort of 'insight' of myself for my husband and children and all my family and friends."

"Dignity Therapy was a lovely experience. Getting down on paper what I thought was a dull, boring life really opened my eyes to how much I really have done."

"This experience has helped me to delve within myself and see more meaning to my life. I really look forward to sharing it with my family. I have no doubt that it will be enlightening to them."

Comments from families

"Mom was extremely closed emotionally and had huge difficulties expressing her feelings. This gave her an opportunity to do so without feeling vulnerable."

"He had something to say, wanted to be heard, wanted to pass on a message of hope. It helped him find some value in what he had done and remember who he was."

"Being able to read his words will be a way of helping me to remember him, and to think of him. I didn't always understand him, because he was a free spirit and I was the worrier. Maybe I didn't trust God enough. I'm glad I'll have his words to comfort me."

"(The transcript was) magnificent. (My husband) wanted to contribute. The interview gave him a 'second chance' to do something to help."

"Reading the document gave my mom a sense of accomplishment, I believe. It gave her a tangible way of looking back at a life well-lived."

"He felt that our grandsons - including our latest, whom unfortunately he never lived to see - would get some idea of his life and what he had achieved."

"Dignity Therapy legitimizes your life and provides an opportunity to put down on paper what you hope is your legacy."

"I would say that it was more helpful than any mourning aspect. It helped me move past it. Family and friends are certainly a support but through the document, my mom was also able to provide support."

"It is something to hold onto at the time of Dad's passing and it made Dad's life and ways alive and tender."

"I think the Dignity Therapy truly helped him feel as though he were doing something useful and to be able to leave behind a part of himself. That in turn has helped myself and the children as it is almost like receiving a special gift of his words that we can have for our lifetime."

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Practical tools have been developed to support people working in health care as they address people's emotional needs. Some of these tools, such as the PDQ, can be adapted to any health care situation and setting. Others are designed for specific situations where patient dignity may be at risk.

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Patient-centred Care - Improving quality and safety through partnerships with patients and consumers

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Accessibility - We aim to provide documents in an accessible format. If you're having problems using a document with your accessibility tools, please contact us for help. Copyright - Unless stated otherwise, materials provided are covered by a Creative Commons Attribution-Non-Commercial-Share Alike (BY-NC-ND) 4.0 International License.

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Advance care planning involves planning for your future health care. It enables you to make some decisions now about the health care you would or would not like to receive if you were to become seriously ill and unable to communicate your preferences or make treatment decisions.

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Advance care planning in languages other than English

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Advance care planning in languages other than English

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Other languages - Advance Care Planning Australia

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Advance care planning information in different languages that you can listen to or read.

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Find this resource on the PEPA/IPEPA website or contact us for a hard copy pepa@qut.edu.au