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Concurrent Session (Bligh/Phillip Room)

Chair: Arno Maetens

a. Dignity in the last phase of life: Perspectives of migrant patients and their relatives in the Netherlands

drs. Xanthe de Voogd (speaking), drs. Marieke Torensma, dr. Mariska Oosterveld-Vlug, Prof. Bregje Onwuteaka-Philipsen, Prof Dick Willems, dr.Jeanine Suurmond
Affiliation: Amsterdam UMC, Amsterdam

Dignity in the last phase of life: perspectives of migrant patients and their relatives in the Netherlands.

Background
Maintaining and strengthening patients’ personal dignity is a prominent goal of palliative care. However, the perspective on what dignity entails seems to be culturally shaped. Studies from western countries show the importance of autonomy for dignity, while studies from non-western countries show the importance of deepening bonds with family and spiritual peace.

Aim
To guarantee palliative care that is responsive to a diverse population, insight is needed in dignity from different (cultural) perspectives. This study explored the perspectives on dignity of patients in the last phase of life with a Turkish, Moroccan and Surinamese migration background in the Netherlands.

Design/Approach
Semi-structured interviews were conducted with 19 patients with a Turkish, Moroccan and Surinamese migration background in the last phase of life, 15 relatives and 8 key informants. Interviews were recorded and transcribed and analyzed according to a thematic content analysis.

Results / Findings
Important findings on dignity in the last phase of life for migrant patients: (1) Visits by family and (close) friends and caretaking by family members preserves dignity of patients, however care by family members is not always possible, therefore relatives feel they are falling short. (2) The relation with God/Allah and surrendering to God’s/Allah’s will preserves dignity. Religious practice provides patients with a mental strength, which preserves their dignity. (3) Care with attention, respect, an and indirect communication about the end of life preserves dignity.

Conclusion
Dignity in the last phase of life among migrant patients in the Netherlands is related to care and support by family members and the relation with God/Allah. This is different from a focus on autonomy and it gives health care professionals insight on a dignified end of life for these patients.

b. Advance Care Planning for culturally and linguistically diverse communities in Australia

Dr Julieanne Hilbers (presenting), Anne Meller

A study was undertaken to find out what would support conversations on advance care planning for people from culturally and linguistically diverse (CALD) backgrounds. Semi-structured interviews were conducted with migrants and children of migrants from Chinese and Greek speaking communities to identify what advance care planning conversations were happening and would be appropriate. Health care providers were also interviewed to find out how they currently support these conversations.
This research highlights a need to:
1. Build the death literacy of both the community, and health care providers including professional health care interpreters.
2. Use professional interpreters to facilitate ACP conversations within the clinical interaction.
3. Need for training to support health professionals to have these conversations.
This research was used to inform the development of educational videos for health care workers to encourage them to have advance care planning conversations with people from CALD backgrounds.

c. Palliative and end of life care: Cultural perspectives of patients and carers

Ms Rochelle Leonide (presenting) - Social Work Manager Braeside Hospital
Mr Abdul Shaik - Former OT Manager Braeside Hospital

PRACTICE ABSTRACT

Background What is the context of this practice activity?
As South West Sydney has one of the highest multicultural populations, interviews conducted with patients of the inpatient palliative care ward aimed to elucidate cultural perceptions and barriers around palliative care and end of life care; as sound understanding of this is vital in order to deliver effective care.
This piece of research has addressed the following recommendations from the New South Wales Auditor-General’s Report re: Planning and evaluating palliative care services in NSW:

Aims What did it set out to achieve?
Recommendation 1: Clearly establish definitions of Palliative Care and End of Life, and stipulate links between the two.
Recommendation 2: Engage family and carers in Palliative Care services.

Actions What did you do?
18 semi-structured interviews were completed with patients, family and carers admitted to the Palliative Care ward at HammondCare’s Braeside Hospital and within the community setting; in order to gain an understanding of the lay and multicultural perceptions of palliative care and end of life care.

Outcomes What did you find out?
Patient’s and carers defined Palliative Care as:
• Cancer
• Hospital care for the sick
• Returning home from hospital
• To recover and go back home
• A place that delivers care to the dying
• Care for the terminally ill
• Care for cleanliness, food, medicine and overall wellbeing.
• Being stable in sickness x 2
• Leads to EOLC
• Same as EOLC
• Listening and talking which are instrumental to treatment
• Ensuring comfort x2
• Dying with dignity x2

Patient’s and carers defined EOLC as:
• Not sure X2
• Unpredictability about how the end will be.
• Taking effect when you become unstable in your terminal illness
• Fatigue and physical changes
• Following on from Palliative Care
• Same as palliative care
• No more hope or help
• Care until death
• Returning to hospital when the “time comes”
• Pain management until you pass away
• “I am going to die”
• Funeral planning to alleviate carers from burden and stress

And

Cultural Perspectives of EOLC and Palliative Care incl (details to be provided in presentation)
- Australian
- Aboriginal
- Vietnamese
- Indian (Hindu)
- Chinese (Buddhist)
- Turkish (Muslim)
- Italian (Roman Catholic)
- Samoan (Christian)

Conclusions and application to PHPC What are the take-home messages? How do they apply in other settings where PHPC/Compassionate Communities might be?
• Interpreters who were involved in this research project, at times provided their personal viewpoints. They felt they were able to represent the patient and the patient’s belief systems and therefore spoke on their behalf because they were of the same cultural background – cultural background is not however homogeneous amongst those from the same country of birth.
• Timing – discussions around palliative care and end of life care to extract patient’s view point and preferences in relation to these should take place prior to entering the terminal phase – as the ability to clearly communicate wishes can be compromised.
• Advanced Care Planning – expected that this would have been referred to more frequently by those interviewed – emphases importance of education required around ACP and availability professionals to assist with this.
• Communication and Team Work - Effective communication and advanced care planning facilitates intervention provided by healthcare professionals in palliative care and end of life care. This enhances and improves consumer engagement, increasing partnership and establishes shared care agreements between health professionals and family/carers. The involvement of clinicians including allied health in patient care, may be more meaningful as the team will be able to provide a tailored approach in order to achieve the agreed goals of care
• Culture - As Australia’s cultural diversity increases, cultural misunderstandings resulting in the provision of inappropriate palliative and end-of-life care to people from linguistically and culturally diverse backgrounds has the potential to grow. All health professionals must have a proactive engagement in culturally and linguistically diverse issues, and therefore need a level of cultural competence when caring for people from different cultural backgrounds and the knowledge of when and how to consult further cultural expertise when required – and realise the limitations of this aid, as per above.

WORKSHOP ABSTRACT

Background and Aims Why is this workshop important? What does it set out to achieve?
- To achieve awareness re: differing cultural perceptions (which may pose as potential barriers) around palliative care and end of life care – sound understanding of this is vital in order to deliver effective care.
- This piece of research has addressed the following recommendations from the New South Wales Auditor-General’s Report re: Planning and evaluating palliative care services in NSW:
o Clearly establish definitions of Palliative Care and End of Life, and stipulate links between the two.
o Engage family and carers in Palliative Care services.

Interactivity Describe how participants will be included in the workshop activities
Participants will be asked to reflect on own cultural/religious beliefs re: EOLC and Palliative Care and share with the wider group. If they do not feel comfortable sharing with the wider group, it can be written anonymously. Participants will have the opportunity to delve deeper in particular cultural perspectives as I will have prepared generic information about some of the more common cultures.
A mural of cultural perspectives will be created throughout the conference, with participants experiences written on a piece of paper that represents the national flag – there will be materials to be able to draw/create the flag available. An example of this will feature on existing poster with research completed on Inpt. Palliative Care ward at Braeside Hospital.

Learning outcomes What do you expect the participants to learn?
- A range of cultural perspectives re: EOLC and Pall Care; how to ensure practice meeting needs of CALD communities.
- How to respect varying cultural perspectives by providing methods utilised by PC team at Braeside Hospital
- A day in the life of Inpatient Palliative Care Ward, Braeside Hospital.

Conclusions and application to PHPC What are the take-home messages? How do they apply in other settings where PHPC/Compassionate Communities might be?
- General awareness of different cultural perspectives to EOLC and Pall Care – highlighting different expectations and styles of care
- Cultural background is not homogeneous.
- Methods of care when working with CALD pt’s.
- Ideas shared re: all of the above.

d. Death and dying: an Islamic perspective

Mariam Ardati

Responses to the death of a loved one are often shaped by individual cultural and belief systems.
The method by which individuals manage their grief provides an authentic insight into a religion and its people. The Islamic faith presents detailed instructions on the rituals around death and dying, and these traditions and practices are distinct and profound. Muslims believe that human life is a gift from God, which He gives and takes away as He chooses. There is great emphasis on the acceptance of God’s Will with restraint and patience, for the believer does not view death as the end of the soul’s journey but merely a transition from one state of existence to another. According to Islamic tradition, life in this world is the enjoyment of a delusion, a temporary existence that is guaranteed to expire at a divinely appointed time when the body will return to the earth from which it was created.
Following an introduction to Islamic perspectives on death and dying, this presentation will examine the four funeral rites afforded to the deceased in Islam, the soul’s journey after death, and Muslim attitudes to grief and loss. Creating an understanding of Muslim attitudes to death and dying may help medical and nursing staff develop more informed approaches to culturally appropriate therapy models and coping strategies for Muslim patients and their families facing end-of-life care.