WE’RE DELIGHTED TO PRESENT THIS MONTH’S ‘EDITOR’S CHOICE’ FROM PALLIATIVE MEDICINE, THE OFFICIAL RESEARCH JOURNAL OF THE EAPC.
Each month, Professor Catherine Walshe, Editor-in-Chief of ‘Palliative Medicine’, chooses an article that readers may find particularly interesting or useful and invites the authors to draw out the key points on the EAPC blog. Focusing on research that is novel, a robust review, from a specific country or just slightly left of field, the ‘Editor’s Choice’ post aims to share experience and stimulate ideas. We hope you’ll read the longer article in ‘Palliative Medicine’, which is Open Access.
Today, Xanthe de Voogd, PhD-Candidate of Amsterdam University Medical Centers, and Jeanine Suurmond, Assistant Professor of Amsterdam University Medical Centers, give the background to their longer article selected as Editor’s Choice in the December issue of ‘Palliative Medicine’.
Changes in the last phase of life, such as bodily and cognitive changes, deterioration, pain and becoming dependent can influence how we value our own worth; our sense of dignity can become impaired. Preserving this experienced sense of dignity, also referred to as personal dignity, is therefore a key aim in palliative care. Patients with migrant backgrounds are hardly included in research about personal dignity in the last phase of life, for example because of linguistic barriers. However, insight into the meaning they attach to dignity, and what is important for their dignity is highly relevant for good palliative care in growing diverse populations. In our recent Palliative Medicine article we gladly report on findings of our qualitative study about the patient’s dignity in the last phase of life, according to patients and their relatives with a Moroccan, Surinamese and Turkish background living in the Netherlands.
Many respondents in our study were religious and their religion played an important role in enabling them to feel dignified. Surrender to God or Allah, and performing religious practices such as praying, were important to the patient’s dignity. Especially for Turkish and Moroccan patients, surrender appeared as a prescription; acceptance that God or Allah decides over death became something to strive for. This included the importance of controlling their own emotions about their situation. Community members paid visits to listen to the patient’s prayers. This communal recognition strengthened patients’ dignity.
Meaningful relationships and feeling connected to others – family, friends, other nursing home residents, care professionals or the community – were vital to dignity. Patients felt dignified when they were recognized for their (former) social role. Receiving and providing food and keeping hope together were often important elements of their relationships with others. Being cared for, or being assisted by family, was of significant importance to dignity. When family was unable to fulfil these care duties, this could infringe the patient’s dignity.
These religious and relational elements were the integral parts of dignity of the patients we interviewed. Losing autonomy, due to needing help for self-care and bathing, was also hard for the interviewed patients, but only some Surinamese patients mentioned that this influenced their sense of dignity.
Interviewed participants also valued for their dignity indirect communication about the end of life which respects the patient’s view that God or Allah decides about life and death. For example by saying, “Everybody has his dossier … You will go, but … there are also people that are healthy and that pass away. … I am in the next room and my heart might stop.”
Maintaining autonomy and not wanting to become a burden are often highlighted in studies about dignity among non-migrant patients in the palliative phase, while the patients in our study seem to lean more towards a religious perspective on dignity and strongly value family care. Care professionals could preserve dignity of migrant patients by attending to these specific elements of dignity.
This post relates to the longer article, ‘A dignified last phase of life for patients with a migration background: A qualitative study’ by X de Voogd, MG Oosterveld-Vlug, M Torensma, BD Onwuteaka-Philipsen, DL Willems, JL Suurmond, published in Palliative Medicine, Volume: 34 issue: 10,page(s): 1385-1392. Article first published online: September 11, 2020; Issue published: December 1, 2020. https://doi.org/10.1177/0269216320948708
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