When your heart is in two places at once - End-of-life care for older first-generation migrants
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When your heart is in two places at once - End-of-life care for older first-generation migrants

When your heart is in two places at once - End-of-life care for older first-generation migrants 1856

A guest blog post by Dr Katrin Gerber, Research Fellow, National Ageing Research Institute (NARI).

Dr Gerber and her NARI colleagues Professor Bianca Brijnath, Emma Maharaj, and Dr Josefine Antoniades are interested in how the experience of being a migrant might affect older people’s end-of-life preferences, values and beliefs. To answer this question, they reviewed the literature of the last 10 years and published their findings in the British Medical Journal of Supportive and Palliative Care.[1]

Like more than six million other people living in Australia, I am a first-generation migrant. Over the last decade prior to COVID-19, we have seen unprecedented rates of migration across the world. This means that we now live and die in a more multicultural environment.

Death remains a taboo in many cultures

The reluctance to discuss end-of-life issues is particularly common among many cultures including Asia, but even in Western countries talking about death is still avoided. Certain cultures are superstitious and fear that talking about death might bring it closer. Others feel that emotional pain and suffering are private matters and consider it impolite to burden others with them. This also relates to the concept of filial piety, where it is part of adult children’s caring responsibilities to protect parents from bad news. This avoidance, however, can mean that people do not prepare for the end of life.

Language barriers and families as interpreters

Talking about death and dying is hard enough, under the best of circumstances - now add nuanced cultural preferences and potential language barriers to the equation. Over 21% of Australians speak a language other than English at home, so when it comes to sensitive conversations with non-English speaking patients, interpreters play a pivotal role.[2] There are considerable access issues: interpreters are not always available when doctors need to deliver difficult news, and they can’t be sure how accomplished interpreters are in balancing the clear translation of end-of-life information in a culturally sensitive way. In the absence of interpreter services, family members or friends are often used as informal interpreters. This raises concerns about how much information is shared and accurately translated.

Health literacy and cultural norms influence decision making

Wrapping your head around a new healthcare system, especially in a different language, can be really confusing. Particular misconceptions exist about hospice and palliative care. For instance, Worth et al.[3] found that many South Asians in Scotland believed that palliative care would only be available in hospitals, which may conflict with their traditional values of caring for family members at home. Such misinformation may prevent patients and families from receiving much needed support at the end of life.

This shows that decision making is further influenced by cultural norms. Individualism is centred on the Western norm of autonomy which for example is valued by Anglo-Celtic migrants from Australia, England, New Zealand, Germany and the Netherlands. Older people from these backgrounds often prefer to make their own end-of-life decisions while considering the views of their family. In contrast, collectivistic cultures prioritise the group over the individual, which is common for example among migrants from Korea, China, South Asia or Italy. Here, a shared, family-based decision-making model is favoured.

Cultural preferences for place of care and place of death

Many migrants’ preferred place of care and place of death is with their family at home and in their country of birth - but these are not always the same. This longing for two different places at once is known as the ‘double home experience’.[4] Older migrants may simultaneously want to die at home surrounded by their family in the country they currently live in and yet long to die at home in their country of birth. Challenges such as COVID-related travel restrictions can make this impossible. These preferences need to be discussed early to make them achievable. And if returning to their country of birth is not possible, clinicians and families might want to consider what can be done to make the current place of care feel a little bit more like home.

What does this mean for care providers?

A ‘one-size-fits-all’ approach simply does not work in end-of-life care. Communication must be tailored to accommodate the unique needs of older migrants. Education for health practitioners and interpreters requires cultural sensitivity and communication skills to initiate difficult conversations. Healthcare services have a responsibility to offer education to their staff beyond the once-a-year, tick-the-box cultural diversity training that has limited transferability into practice. Useful translated information about palliative care is freely available through the Australian Health Translations Directory.[5]

Furthermore, culturally sensitive care involves asking about the preferred degree of involvement of family members in decision-making, the desired level of disclosure of medical information, as well as specific cultural or religious needs. For example, clinicians could ask their patients: ‘How much would you like to know about your condition? And would you like your family member to be present while we go through these test results together?’

Finally, to create a system that is truly sensitive to people’s cultural needs on a larger scale, it is important to include the voices of older migrants in end-of-life research and policymaking rather than making decisions for and about them.

References

  1. Gerber K, Maharaj E, Brijnath B, Antoniades J. End-of-life care for older first-generation migrants: a scoping review. BMJ Support Palliat Care. 2020 Dec 9:bmjspcare-2020-002617. doi: 10.1136/bmjspcare-2020-002617. 

  2. Australian Bureau of Statistics. (2017). Census of Population and Housing. Retrieved from https://www.abs.gov.au/ausstats/abs@.nsf/Lookup/by%20Subject/2071.0~2016~Main%20Features~Cultural%20Diversity%20Data%20Summary~30

  3. Worth A, Irshad T, Bhopal R, Brown D, Lawton J, Grant E, Murray S, Kendall M, Adam J, Gardee R, Sheikh A. Vulnerability and access to care for South Asian Sikh and Muslim patients with life limiting illness in Scotland: prospective longitudinal qualitative study. BMJ. 2009 Feb 3;338:b183. doi: 10.1136/bmj.b183.

  4. Paal P, Bükki J. "If I had stayed back home, I would not be alive any more…" - Exploring end-of-life preferences in patients with migration background. PLoS One. 2017 Apr 6;12(4):e0175314. doi: 10.1371/journal.pone.0175314.

  5. Health Translations Directory. (2016). Palliative Care. Retrieved from https://www.healthtranslations.vic.gov.au/resources/end-of-life-and-palliative-care-services

 

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Dr Katrin Gerber, Research Fellow, National Ageing Research Institute (NARI).

 

 

 

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