Erik Olsman, MA, Department of General Practice, Section of Medical Ethics, Academic Medical Center, University of Amsterdam, The Netherlands, explains the background to a longer research study that has been selected as ‘Editor’s choice’ in the January issue of Palliative Medicine.
The title could be a statement of a healthcare professional. Many physicians and nurses in our interview study on hope in palliative care raised the topic of false hope. Emphasising palliative care patients’ need for hope, many professionals were struggling: how to be realistic while maintaining patients’ hope?
I could understand their struggle from the fact that they wanted to provide correct information to their patients. But coming from the field of ethics and spirituality, I felt that they took a different perspective on hope than I was used to.
Our review study helped me to see this clearer and I hope (!) that it will help others as well. In this study we described healthcare professionals’ perspectives on hope of their palliative care patients. We found three perspectives on patients’ hope, which implied different definitions, values and actions:
- Realistic perspective: hope was an expectation that should be truthful and healthcare professionals tried to adjust hope to truth
- Functional perspective: hope was a coping mechanism that should help patients and healthcare professionals tried to foster hope
- Narrative perspective: hope was meaning that should be valuable for patients and healthcare professionals tried to interpret it.
I began to see that I, for example in my work as a non-denominational chaplain in healthcare, often take a narrative perspective. However, I know chaplains who often work with realistic perspectives and functional perspectives and physicians who prefer narrative perspectives. So we should not restrict perspectives to professional roles.
But how could these perspectives be practically used? If a patient says ‘I hope for cure,’ and I decide to respond to that, I may ask him: ‘Do you think your hope will come true?’ (realistic perspective), or ‘What would it mean for you to be cured?’ (narrative perspective). I could also say: ‘That would be great! It may be unlikely but miracles do happen!’ (functional perspective).
While a lot of medical ethical literature has focused on the realistic perspective, our study could support palliative care professionals to take other perspectives on hope as well. A patient for whom hope is very important, can be supported when her story around hope is listened to (narrative perspective), and when her hope is fostered (functional perspective). That may offer her strength to deal with less positive scenarios as well (realistic perspective).
So the three perspectives are not mutually exclusive. They are rather possibilities that serve different aims at different moments.
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This post relates to a longer article, ‘Should palliative care patients’ hope be truthful, helpful or valuable? An interpretative synthesis of literature describing healthcare professionals’ perspectives on hope of palliative care patients’ by Erik Olsman, Carlo Leget, Bregje Onwuteaka-Philipsen and Dick Willems. Palliat Med January 2014 vol. 28: 59-70. First published on April 15, 2013, doi: 10.1177/0269216313482172.
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