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How should compassion be conceived and enacted in end of life care? A patient perspective
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  1. Hannah Palfrey1,
  2. Kathy Armour2,
  3. Rachel Grubb2 and
  4. Jonathan Ives1,3
  1. 1The University of Birmingham, UK
  2. 2 Marie Curie Hospice West Midlands, UK
  3. 3The University of Bristol, U.K

Abstract

Background As agency and capacity decline towards the end of life, compassion becomes an increasingly important and apposite feature of healthcare. Whilst more compassionate healthcare is being called for, especially in end of life contexts, there is relatively little understanding of what compassion actually is, or how it can be enacted.

Aim To conduct an empirical bioethics analysis to explore the concept of compassion and how this is understood by patients, in order to inform an ethical analysis of how compassion ought to be conceived and performed in end of life care (EOLC).

Methods An exploratory qualitative approach underpinned by Frith’s Symbiotic Empirical Ethics methodology was used. Six semi-structured interviews were conducted in a UK hospice.

Results and discussion Compassion was conceived in different ways by different participants, but 6 key themes emerged that patient’s identified as essential to a compassionate experience: ‘caring motivation’, ‘attentive acts’, ‘caring what I care about’, ‘being relational’, ‘response to suffering’ and ‘time.’

However, these themes are not all compatible. Consequently, each constituent of compassion was explored; examining whether each was necessary for an acceptable definition of compassion. From this analysis, a conceptualisation of compassion in EOLC was developed that focuses on compassion being relational, centred on performing attentive individualistic acts.

Conclusion Compassionate care should be based on an individual patient’s needs, and this study acts as a reminder that compassionate acts need not be lengthy. Moreover, compassion is a holistic concept, should be treated as such. Finally, through attentive practice, compassion can be ‘learned’.

References

  1. Bramley L, Matiti M. How does it really feel to be in my shoes? Patients’ experiences of compassion within nursing care and their perceptions of developing compassionate nurses. J Clin Nurs 2014;23(19–20):2790–2799

  2. Dewar B, Adamson E, Smith S, et al. Clarifying misconceptions about compassionate care. J Adv Nurs 2013; 70(8): 1738–1747

  3. Frith L. Symbiotic empirical ethics: a practical methodology. Bioethics 2012;26(4):198–206

  4. Wenrich MD, Curtis JR, Ambrozy DA, et al. Dying patients’ need for emotional support and care from physicians: perspectives of patients with terminal illness, families, and health care providers. J Pain Symptom Manage 2003;25(3):236–246

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