User Consultation: Patients and Carers

The ‘Cultural Issues in End of Life Care Team’ are interested to hear patients, carers and health care professionals’ opinions and experiences of end of life care.

In order to better focus our work, we would like people to share with us their opinions and experiences, particularly the impact of culture and cultural differences in different countries and places of care.

We would also appreciate any general comments about the blog, the work and features posted to the blog, or the focus of our work.

The research carried out by our team has identified a number of important priorities in regard to culture and end of life care. We would be particularly interested to know what patients, carers and health care professionals think about the following two issues:

1. Cultural competence and care for minority ethnic groups

Evidence of low use of end of life care services by minority ethnic groups and some dissatisfaction with care has increased the popularity of ‘cultural competency’ approaches.

‘Cultural competency’ training attempts to make health care professionals sensitive to cultural differences, provide them with knowledge about different cultural traditions and includes specific skills training in areas such as communication.1-3

There have, however, been a number of criticisms raised about such training – that a focus on information about specific cultural groups can lead to stereotyping and that such training serves to routinise the encounter between healthcare professionals and service users from different cultural backgrounds.4 5

What do you think about such training?

Do you think such training can improve the quality of care?

Do you think it will lead to people from minority ethnic groups being treated differently?

Are you a healthcare professional who has undertaken such training? Do you feel that cultural competency training improved your interactions with people from different cultural backgrounds? If not, why not?

Please share your opinions and experiences by posting a comment!

2. Diversity in changing environments

Cultural differences can be as pronounced between people from different generations as people from different cultural backgrounds. In the context of changing cultural identities how should cultural preferences be taken into account in end of life care?

Do you think that cultural competency approaches are useful or even appropriate in a changing society?

Post a comment and let us know what you think!

1. Papadopoulos I, Tilki M, Taylor G. Transcultural care: a guide for health care professionals. 1998.

2. Lister P. A Taxonomy for Developing Cultural Competence. Nurse Education Today 1999;19(4):313-18.

3. Campinha-Bacote J. The process of cultural competence in the delivery of health care services: A model of care. Journal of Transcultural Nursing 2002;13(3):181-84.

4. Gunaratnam Y. Intercultural palliative care: do we need cultural competence? International Journal of Palliative Nursing 2007;13(10):470.

5. Gunaratnam Y. From competence to vulnerability: Care, ethics, and elders from racialized minorities. Mortality 2008;13(1):24-41.

4 responses to “User Consultation: Patients and Carers

  1. Volunteers_Netherlands

    In a local organization of volunteers in palliative terminal care in the Netherlands a group of volunteers that was committed to a project aimed at developing good support for people of all ethnic backgrounds was trained around cultural diversity. General differences between western and non-western cultures were explained, and the participants were asked to read more about the subject. One of the volunteers got hold of a book that explained about ‘the islam’ and was shocked by some of the teachings, that reminded her a lot of the conservative Christian background she had just liberated herself from. She then decided she didn’t want to have anything to do with the project anymore. There could probably have been many triggers that made her reach this conclusion, but I can imagine that this approach of highlighting differences and spreading knowledge about islam ‘in general’ has been a major trigger for her negative feelings towards islam.
    In the ‘competency training’ that we developed, we decided to focus not on differences between cultures, but on general competencies (authenticity, sensitivity, tuning into the needs and communication about the support needed, reflection, etc.) that are important in the work of volunteers, and try to bring these competencies to a higher level through the focus on ethnic diversity. For instance: Improving participants’ sensitivity of the effects of migration on the last phase of life, by showing them a film about elderly Dutch immigrants in Australia and New Zealand.
    I would be interested to hear more experiences about competency training focusing on cultural differences compared to a focus on good care in an environment that is characterized by ethnic diversity.

  2. I think that these are exactly the experiences that such training sessions can build on to develop thinking about cultures. Rather than seeing it as a failure. What are the expectations and motivations that people have who come to these courses are crucial to unpack from the start.

  3. Thanks to those who left comments. This post has received over 200 views in the last 2 weeks so you’ll be happy to know that others have seen and read about your experiences and opinions!

    We are still interested in getting more feedback about our work and the blog – more comments are very welcome!

    The Cultural Issues in End of Life Care Team

  4. I’m not sure if this is the kind of experience you are interested to hear about, but as a student nurse I am shocked at the treatment some patients receive in hospital. I was recently on a ward when one of the patients was identified as dying and put on the Liverpool Care Pathway. She had her eyes open, obviously in some pain, but could not communicate. It was some hours after being put on the Liverpool Care Pathway that she was actually given pain relief, because the nurses were busy. Later, before she was transferred to hospice, she was given a bed bath. Why did she need to be given a bed bath? This obviously caused her considerable pain; her face was contorted whilst she was being moved. The only explanation is that the appearance of ‘care’ (her being clean when picked up for hospice) was more important than making her comfortable and pain free in her last hours of life. For me the priorities of some of the nurses on the ward were completely messed up.

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