María Arantzamendi and Carlos Centeno of the ATLANTES Programme, Universidad de Navarra, Spain, explain the background to their longer article published in the March/April issue of the European Journal of Palliative Care.
“Thank you. She always said that you were her friend, that you really ‘saw’ and understood her.”
I heard these words a few minutes after Laura died . . .
We can all recall situations in which something profound has happened; something that cannot be touched but still experienced in a deep and meaningful way: i.e. ‘intangibles’. Love and truth, for example, are both intangibles, as are many of the values encountered in palliative care.
The experience of feeling cared for and being accompanied during the difficult road of advanced and terminal illness is much more than something that can be measured; it involves a mode of caring, a style of care, that reflects underlying core values. Our care must be given with compassion, attentiveness, gentleness, presence, hope and understanding.1 Intangibles that preserve a patient’s perceived dignity – thereby supporting the individual’s perception of ’self’, can be damaged as a result of their illness and, at times, due to inappropriate attention.
We have found that patients and their families appreciate these intangible values of palliative care and, despite being non-material in work and discussion with families and patients, these values become almost palpable through expression in words and actions. 2 After seeing her relative pass away, one woman wrote, ‘I would like to be lucky enough to be cared for in this way … in my final moments.’ They feel human warmth and proximity, the safety of an environment in which they can lose their sense of fear and feel valued as unique persons. Letters of gratitude from relatives show how humanity and compassion are intensely appreciated, 3 and these documents testify to the transformative power of palliative care.
Palliative care is growing globally, adapting to very different cultures and settings. Though it may be referred to differently in distinct settings, the intangible aspects of palliative care remain common to all. We should not accept new definitions that do not recognize the most hidden, intangible part of our work, as it is essential in appreciating and understanding palliative care.
If we want to explain better to society and other health professionals what palliative care is, we need more than just a good definition. We need to give voice to patients’ accounts, which have immense power and ability to show the intangible values of palliative care. And in order to better explain palliative care, palliative care education for nurses and physicians is a necessary component.
As Saint-Exupéry wrote, “The essential is invisible to the eye.’ 4 In palliative care, we possess a treasure chest of essential values, but one that is often hidden. The ATLANTES Research Programme aims to ensure that these intangible elements of palliative care are recognized and disseminated in society and among professionals.
- Larkin P. Listening to the still small voice: the role of palliative care nurses in addressing psychosocial issues at end of life. Prog Palliat Care 2010; 18: 335-340.
- De Simone G. if you want to understand the invisible, look carefully at the visible. Cur Opin Support Palliat 2015; 9: 355-356.
- Centeno C, Arantzamendi M, Rodríguez B, Tavares M. Letters from relatives: a source of information providing rich insight into the experience of the family in palliative care. J Palliat Care 2010; 26: 167-175.
- De Saint-Exupéry A. The Little Prince. Orlando, Florida: Harcourt Inc. 2000.
More about the authors . . .
Carlos Centeno is Titular Professor in the Faculty of Medicine at the Universidad de Navarra, principal investigator on the ATLANTES Programme: Human Dignity, advanced disease and palliative care, and Director of the Palliative Care Department of the Clínica Universidad de Navarra.
María Arantzamendi Solabarrieta is researcher on the ATLANTES Programme.
Read the full article in the European Journal of Palliative Care
This post relates to a longer article, ‘Intangible values of palliative care’ by María Arantzamendi and Carlos Centeno, published in the March/April 2017 edition of the European Journal of Palliative Care (vol. 24.2).
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Read more posts relating to articles published in the European Journal of Palliative Care on the EAPC Blog.