Hostname: page-component-78c5997874-4rdpn Total loading time: 0 Render date: 2024-11-04T21:08:04.578Z Has data issue: false hasContentIssue false
  • English
  • Français

What does care mean? Perceptions of people approaching the end of life

Published online by Cambridge University Press:  28 September 2010

Anna L. Janssen  and
Roderick D. MacLeod
Anna L. Janssen*
Affiliation:
Department of Psychology, Insititute of Psychiatry, King's College London, United Kingdom
Roderick D. MacLeod
Affiliation:
Goodfellow Unit, School of Population Health, University of Auckland, New Zealand
*
Address correspondence and reprint requests to: Anna Janssen, Department of Psychology, P.O. 77, The Henry Wellcome Building, Institute of Psychiatry, King's College London, De Crespigny Park, London SE5 8AF, United Kingdom. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

This project sought to better understand the nature of medical care from the perspective of people approaching the end of life.

Method:

We asked 13 people who were dying (and a family member for each) to describe their care and the ways in which doctors' behavior fosters or inhibits the feeling that they were cared for as individuals. Interviews took a phenomenological approach. Data analysis was thematic.

Results:

Examples used by participants as evidence of care varied widely and showed the potentially complex nature of quality care. Participants' descriptions reflect the many ways people can impart and experience care as unique individuals in the medical context. They also provide clear examples of what uncaring behaviour looks and feels like.

Significance of results:

The importance of care was clearly illustrated through descriptions of the benefits of caring behavior and the negative consequences of uncaring behavior. In order to demonstrate the empathy and compassion expected and assumed of medical graduates and engender a feeling of being cared for among their patients, doctors need to invite and develop a relationship with those they are caring for. There needs to be a focus on each member of the caring relationship primarily as individual human beings.

Keywords

CareEducationPatient experiencesPalliative care
Type
Original Articles
Information
Palliative & Supportive Care , Volume 8 , Issue 4 , December 2010 , pp. 433 - 440
Copyright
Copyright © Cambridge University Press 2010

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Association of American Medical Colleges Report 1. (2008). Learning Objectives for Medical School Education: Guidelines for Medical Schools. https://services.aamc.org/Publications/showfile.cfm?file=version87.pdf&prd_id=198&prv_id=239&pdf_id=87.Google Scholar
Attree, M. (2001). Patients' and relatives' experiences and perspectives of ‘Good’ and ‘Not so Good' quality care. Journal of Advanced Nursing, 33, 456–466.CrossRefGoogle ScholarPubMed
Back, A.L., Young, J.P., McCown, E., et al. (2009). Abandonment at the end of life from patient, caregiver, nurse, and physician perspectives: Loss of continuity and lack of closure. Archives of Internal Medicine, 169, 474–479.CrossRefGoogle ScholarPubMed
Beach, M.C., Roter, D.L., Wang, N.-Y., et al. (2006). Are physicians' attitudes of respect accurately perceived by patients and associated with more positive communication behaviors? Patient Education and Counselling, 62, 347–354.CrossRefGoogle ScholarPubMed
Benner, P. (1994). The tradition and skill of interpretive phenomenology in studying death, illness, and caring practices. In Interpretive Phenomenology: Embodiment, Caring and Ethics in Health and Illness, Benner, P. (ed.). pp. 99–128. London: Sage.CrossRefGoogle Scholar
Branch, W.T. (2000). The ethics of caring and medical education. Academic Medicine, 286, 1067–1074.Google Scholar
Charlton, R. & Currie, A. (2008). A UK perspective on worldwide inadequacies in palliative care training: A short postgraduate course is proposed. American Journal of Hospice and Palliative Medicine, 25, 63–71.CrossRefGoogle Scholar
Chen, D., Lew, R., Hershman, W. et al. (2007). A cross-sectional measurement of medical student empathy. Journal of General Internal Medicine, 22, 143–1438.CrossRefGoogle ScholarPubMed
Churchill, L.R. & Schenk, D. (2008). Healing skills for medical practice. Annals of Internal Medicine, 149, 720–724.CrossRefGoogle ScholarPubMed
Coulehan, J.L., Platt, F.W., Egener, B., et al. (2001). Words that help build empathy. Annals of Internal Medicine, 135, 221–227.CrossRefGoogle ScholarPubMed
Darwall, S. (1998). Empathy, sympathy, care. Philosophical Studies, 89, 261–282.CrossRefGoogle Scholar
Egnew, T.R. & Wilson, H.J. (2010). Faculty and medical students' perceptions of teaching and learning about the doctor-patient relationship. Patient Education and Counseling, 79, 199–206.CrossRefGoogle ScholarPubMed
Feinstein, A.R. (2002). Is “quality of care” being mislabelled or mismeasured? The American Journal of Medicine, 112, 472–478.CrossRefGoogle ScholarPubMed
Fine, M. & Glendinning, C. (2005). Dependence, independence or interdependence? Revisiting the concepts of ‘care’ and ‘dependency. Ageing and Society, 25, 601–621.CrossRefGoogle Scholar
Fogarty, L.A., Curbow, B.A., Wingard, J.R., et al. (1999). Can 40 seconds of compassion reduce patient anxiety? Clinical Oncology, 17, 371–379.Google ScholarPubMed
Gibbons, J., McCoubrie, R., Maher, J., et al. (2009). Incorporating palliative care into undergraduate curricula: Lessons for curriculum development. Medical Education, 43, 773–783.Google Scholar
Hojat, M., Gonnella, J.S., Nasca, T.J., et al. , (2002). Physician empathy: Definition, components, measurement, and relationship to gender and specialty. American Journal of Psychiatry, 159, 1563–1569.CrossRefGoogle ScholarPubMed
Janssen, A.L., MacLeod, R.D. & Walker, S.T. (2008). Recognition, reflection, and role models: Critical elements in education about care in medicine. Palliative & Supportive Care, 6, 389–395.CrossRefGoogle ScholarPubMed
Kaasa, S. & Loge, J.H. (2003). Quality of life in palliative care: Principles and practice. Palliative Medicine, 17, 11–20.CrossRefGoogle ScholarPubMed
Kelly, B., Varghese, F.T., Burnett, P., et al. , (2008). General practitioners’ experiences of the psychological aspects in the care of a dying patient. Palliative & Supportive Care, 6, 125–131.CrossRefGoogle ScholarPubMed
Lloyd-Williams, M. & MacLeod, R.D. (2004). A systematic review of teaching and learning in palliative care within the medical undergraduate curriculum. Medical Teacher, 26, 683–690.CrossRefGoogle ScholarPubMed
Luker, K.A., Austin, L., Caress, A., et al. (2000). The importance of ‘knowing the patient’: Community nurses' constructions of quality in providing palliative care. Journal of Advanced Nursing, 31, 775–782.CrossRefGoogle ScholarPubMed
MacLeod, R.D. (2000). Learning to care: A medical perspective. Palliative Medicine, 14, 209–216.CrossRefGoogle Scholar
Morse, D.S., Edwardsen, E.A. & Gordon, H.S. (2008). Missed opportunies for interval empathy in lung cancer communication. Archives of Internal Medicine, 168, 1853–1858.CrossRefGoogle Scholar
Mutto, E., Cavazolli, C., Ballbe, J.A., et al. (2009). Teaching dying patient care in three universities in Argentina, Spain, and Italy. Journal of Palliative Medicine, 12, 603–607.CrossRefGoogle ScholarPubMed
Osler, W. (1914; 1948). Aequanimitas: With Other Addresses to Medical Students, Nurses and Practitioners of Medicine. London: H. K. Lewis.Google Scholar
Peabody, F.W. (1927). The care of the patient. Journal of the American Medical Association, 88, 877–882.CrossRefGoogle Scholar
Pereira, J., Pateux, S., Cantin, B., et al. (2008). Palliative care education in Swiss undergraduate medical curricula: A case of too little, too early. Palliative Medicine, 22, 730–735.CrossRefGoogle ScholarPubMed
Perner, J., Ruffman, T. & Leekham, S.R. (1994). Theory of mind is contagious: You catch it from your sibs. Child Development, 64, 1228–1238.CrossRefGoogle Scholar
Perskey, G.J., Nelson, J.W., Watson, J., et al. (2008). Creating a profile of a nurse effective in caring. Nursing Administration Quarterly, 32, 15–20.CrossRefGoogle Scholar
Quirk, M., Mazor, K., Haley, H.-L., et al. (2008). How patients perceive a doctor's caring attitude. Patient Education and Counselling, 72, 359–366.CrossRefGoogle ScholarPubMed
Reynolds, W.J & Scott, B. (2000). Do nurses and other professional helpers normally display much empathy? Journal of Advanced Nursing, 31, 226–234.CrossRefGoogle ScholarPubMed
Roter, D.L., Stewart, M., Putnam, S.M., et al. (1997). Communication patterns of primary care physicians. Journal of the American Medical Association, 277, 350–356.CrossRefGoogle ScholarPubMed
Schattner, A. (2009). The silent dimension: Expressing humanism in each medical encounter. Archives of Internal Medicine, 169, 1095–1099.CrossRefGoogle ScholarPubMed
Spruyt, O., MacLeod, R. & Hudson, P. (2007). Palliative care education in Australia and New Zealand. In Education in Palliative care - Building a Culture of Learning. Wee, B. & Hughes, N. (eds.). pp. 59–69. Oxford: Oxford University Press.CrossRefGoogle Scholar
Tanner, C.A., Benner, P., Chesla, C. et al. (1993) The phenomenology of knowing the patient. Image: Journal of Nursing Scholarship, 25, 273–280.Google ScholarPubMed
Watson, J. (2003). Caring theory as an ethical guide to administrative practices. Nursing Administration Quarterly, 30, 48–55.CrossRefGoogle Scholar