Cultural differences and advance care planning for residents with dementia in nursing homes– emerging considerations and recommendations from the mySupport study

Authors: Alan Connolly, Lancaster University, United Kingdom, Silvia Gonella, University of Turin, Italy, Karolina Vlckova, Center for Palliative Care, Czech Republic, Laura Bavelaar, Leiden University Medical Center, Netherlands, Nicola Cornally and Irene Hartigan, University College Cork, Republic of Ireland.
Date of Publication: June 2022
Keywords: cultural awareness and sensitivities, death, long term care facilities, education

Cultural differences and mySupport study
Across Europe the proportion of immigrants in national populations averages around 10%, varying for example from 1.6% in Poland to 18.3% in Sweden [1]. Internationally, migrant nurses make up a substantial percentage of healthcare workers [2]. This blog discusses how cultural differences may impact approaches to advance care planning among nursing home staff and between staff and family caregivers of residents with dementia.

An educational intervention called the Family Carer Decision Support (FCDS) intervention has been developed to assist nursing home staff in supporting family carers to be involved in decision making about end-of-life care for their relative with advanced dementia. The main aim of mySupport study was to adapt, implement and evaluate the intervention in six countries: United Kingdom, Republic of Ireland, Netherlands, Canada, Czech Republic and Italy.

Nursing homes involved in mySupport study [3] have significant proportions of healthcare workers from a non-Western European or North American background. For example, in Ireland 27% of care workers working with older people are from outside Ireland [4] and in the Netherlands, approximately 10% of people working in long-term care have a ‘non-Western’ cultural background [5].

As an international study, we were interested in any cultural differences within and between the partner countries. This includes differences of views on advance care planning held by staff, family caregivers, or researchers and how this influenced the study’s findings or the process of advance care planning more generally. However, the impact of cultural difference on advance care planning practices and staff approach to resident’s end-of-care was not a target of the research; rather it emerged from interviews with participants.

The value of advance care planning training for staff
Nursing staff taking part in mySupport study received training, liaised with family caregivers, and participated in family care conferences/meetings with family caregivers. During interviews with researchers, one nurse who was from India, expressed that end-of-life care in Ireland differs from care in her home country, and planning for care at end-of-life is not a cultural norm. Nurses from outside of Europe commented that end-of-life cultural and religious views, rituals, and practices around death may well be very different to those within Europe.

Nursing staff comments demonstrated that they were navigating a culturally sensitive area. There was deep discussion on advance care planning practices and the opinion formed that some countries had ‘better’ or ‘worse’ approaches. One felt that, given that end-of-life care practices vary significantly internationally, mySupport intervention could be valuable in terms of sharing staff experiences and information on practices and values of end-of-life care in countries like Ireland. A second nurse taking part in the study saw it as providing a standard framework with which to approach the topic, which was hugely beneficial in terms of ensuring that people with different cultural experiences of advance care planning were approached in a sensitive and similar manner.

Another aspect of the value of the study emerging from the field data related to the view of researchers in the Italian team that it improved the process of how advance care planning was practiced in the nursing home. Family caregivers interviewed spoke about accepting decisions being made by healthcare professionals, as opposed to decision making being actively shared between family caregivers and professionals. Existing academic research highlights that traditionally dominant Catholic ethos in healthcare can influence approaches to advance care planning [6].

The impact of language proficiency
While all countries involved in the study have regulations regarding language proficiency for overseas nurses whose first language is not that of the host country, the specific requirements and implication of these regulations vary internationally. Language barriers were identified as an issue by the Italian research team in mySupport study, while in the process of identifying possible staff who might participate in the intervention. For example, they note that a nurse was ruled out for participation as the language barrier would make sustaining in-depth meetings with family caregivers difficult.

It was also noted by the Czech Republic team, in field notes, that nursing staff from Ukraine working with Czech family caregivers sometimes experienced negative feedback based on tensions around language proficiency and accents. There are no specific data available regarding the numbers of Ukrainians working in healthcare roles, however from 2016, the Czech government has responded to labour shortages in the healthcare system by introducing a fast-track visa system for Ukrainians to make it easier for them to work in the country.

Interestingly, a staff member at one if the Italian sites noted that cultural influences related to language were evident. This related to how certain words are used and nuances that accompany body language and voice inflections. A large proportion of non-Italian healthcare workers are employed in long-term residential care settings, such as nursing homes, since they are usually privately owned and thus less constrained by existing regulatory barriers around public employment. In this case all staff were either Italian or Eastern European, and research on the demographics of the sector indicates that almost half (45.2%) are from Romania, with other significant national groups being from Poland, Albania, India, and Peru [7].

Differing perspectives on death
Death is an uncomfortable topic for some and/or a taboo subject in some cultures, which can make conversations about death, which are necessary for advance care planning, difficult for many people. Researchers on the study have observed that there is more of a taboo around conversations about death and dying in southern European countries such as Italy, and much less so in northern European societies like the Netherlands. An observation on the topic from a non-Irish staff member, originally from Australia at one of the Irish sites, was that they felt that in Ireland advance care planning was discussed more openly and with less difficulty than in Australia.

Another nurse participant at one of the Irish sites also felt that cultural taboos around death and the approach to advance care planning in her home country, India, were linked to traditional hierarchies in medicine. A key difference outlined between Ireland and India was that it was most commonly doctors that discussed advance care planning with family caregivers, not nurses or other healthcare workers. This nurse indicated that this may be something which nurses moving to Ireland from India may need to get used to or receive guidance or training on to successfully support advance care planning. This is also true for the nurses in the Netherlands, where ACP is traditionally a role of the physician.

Furthermore, in the Netherlands research cultural differences between long-term care staff and residents are common [8]. The backdrop to this is the fact that 23% of the Dutch population in 2013 had “a migration background” (i.e. born abroad or with at least one parent born abroad). This includes significant numbers of people from Moroccan and Turkish backgrounds [9]. Some staff at the Dutch sites expressed how cultural differences can be difficult in these situations, as people may have different perspectives on the end of life. One staff member shared her experience of liaising with a family member from a non-Dutch background, who perceived a palliative approach to care to be morally wrong and wanted their relative to “fight until the end”. The view of the research team and participating staff in the context of this interaction was that respecting other’s opinions and providing clear information is key. This highlights that issues or tensions around cultural difference and advance care planning are bi-directional regarding staff and residents and families of residents.

Conclusion and Recommendations
mySupport study was a training intervention supplemented with co-designed materials such as the Comfort Care Booklet, which is a resource for family caregivers and staff. As part of mySupport study, each of the international teams tailored the Comfort Care Booklet intervention to ensure the booklet was fit for purpose from a transnational legal and socio-cultural perspective [10]. Despite the revisions and cross-cultural adaptations to the intervention, narratives from participants outlined here, demonstrate the urgency of adapting study design and training materials such as these to reflect cultural awareness and competency by staff in research around advance care planning. We make 4 recommendations on advance care planning and issues of cultural difference:

1. Staff should receive cultural awareness training specific to end-of-life care and advance care planning. It is important that staff feel supported in having these conversations, and training should also include specific support around the difficulty of talking about death.
2. Guidance should be in place to ensure that staff explicitly consider and explore the cultural background of the person they are dealing with in relation to advance care planning (i.e., the resident, or family caregiver), before discussions around death take place.
3. We recommend staff to reflect on their values, beliefs, culture etc. and explore how this may impact on the care they are provide at the end-of-life.
4. We recommend the inclusion of discussion on cultural difference and advance care planning in future research in the area.

To learn more about the authors go to: www.mysupportstudy.eu/partners/ 

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