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Current dilemmas in the assessment of suffering in palliative care

Published online by Cambridge University Press:  05 September 2014

Alicia Krikorian*
Affiliation:
Pain and Palliative Care Group, School of Health Sciences, Universidad Pontificia Bolivariana, Medellín, Colombia
Juan Pablo Román
Affiliation:
Department of Organizations and Management, Universidad Eafit, Medellín, Colombia
*
Address correspondence and reprint requests to: Alicia Krikorian, Pain and Palliative Care Group, School of Health Sciences, Universidad Pontificia Bolivariana, Calle 78B No. 72A-109, Medellín, Colombia. E-mail: aliciakriko@gmail.com

Abstract

Objective:

Although relief from suffering is essential in healthcare and palliative care, few efforts have aimed at defining, operationalizing, and developing standards for its detection, assessment, and relief. In order to accurately explore and identify factors that contribute to suffering, more attention needs to be focused on quality assessment and measurement, not only for assessment purposes but also to test the effectiveness of interventions in relieving suffering. The scope of the present paper is to discuss the strategies that aid in the detection and assessment of the suffering experience in patients with chronic illnesses and/or in palliative care settings, and the dilemmas commonly encountered regarding the quality of available assessment measures.

Method:

A general description of instruments available for suffering assessment is provided. Matters regarding the accuracy of the measures are discussed. Finally, some dilemmas regarding the quality of the measures to screen for and assess suffering are presented.

Results:

There have been some achievements toward adequate suffering assessment. However, a more robust theoretical background is needed, and empirical evidence aimed at supporting it is required. In addition, further examination of the psychometric characteristics of instruments in different populations and cultural contexts is needed.

Significance of results:

An interesting number of assessment measures are now available for use in the palliative care setting, employing innovative approaches. However, further examination and validation in different contexts is required to find high-quality tools for detection of suffering and assessment of the results of intervention.

Type
Original Articles
Copyright
Copyright © Cambridge University Press 2014 

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References

REFERENCES

Aminoff, B.Z., Purits, E., Noy, S., et al. (2004). Measuring the suffering of end-stage dementia: Reliability and validity of the Mini-Suffering State Examination. Archives of Gerontology and Geriatrics, 38(2), 123130.CrossRefGoogle ScholarPubMed
Anderson, R.E. (2014). Human suffering and quality of life: Conceptualizing stories and statistics. New York: Springer.CrossRefGoogle Scholar
Azevedo São Leão Ferreira, K., Kimura, M. & Jacobsen Teixeira, M. (2006). The WHO analgesic ladder for cancer pain control, twenty years of use: How much pain relief does one get from using it? Supportive Care in Cancer, 14(11), 10861093.CrossRefGoogle Scholar
Baines, B.K. & Norlander, L. (2000). The relationship of pain and suffering in a hospice population. The American Journal of Hospice & Palliative Care, 17, 319326.CrossRefGoogle Scholar
Bayés, R., Limonero, J.T., Barreto, P., et al. (1995). Assessing suffering. Lancet, 346(8988), 1492.CrossRefGoogle ScholarPubMed
Bayés, R., Arranz, P., Barbero, J., et al. (1996). Propuesta de un modelo integral para una intervención terapéutica paliativa. Medicina Paliativa, 3(3), 114121.Google Scholar
Bayés, R., Limonero, J.T., Barreto, P., et al. (1997). A way to screen for suffering in palliative care. Journal of Palliative Care, 13, 2226.CrossRefGoogle ScholarPubMed
Benedict, S. (1989). The suffering associated with lung cancer. Cancer Nursing, 12, 3440.CrossRefGoogle ScholarPubMed
Besner, G. & Rapin, C.H. (1993). The hospital: Creating a pain-free environment. A program to improve pain control in hospitalized patients. Journal of Palliative Care, 9, 5152.CrossRefGoogle ScholarPubMed
Black, H.K. & Rubinstein, R.L. (2004). Themes of suffering in later life. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 59(1), S17S24.CrossRefGoogle ScholarPubMed
Blume, E.D., Balkin, E.M., Aiyagari, R., et al. (2014). Parental perspectives on suffering and quality of life at end-of-life in children with advanced heart disease: An exploratory study. pediatric critical care medicine. Pediatric Critical Care Medicine, 15(4), 336342.CrossRefGoogle Scholar
Bot, S.D., Terwee, C.B., van der Windt, D.A., et al. (2003). Psychometric evaluation of self-report questionnaires: The development of a checklist. In Proceedings of the second workshop on research methodology, June 25–27, 2003 . Ader, H.J. & Mellenbergh, G.J. (eds), pp. 161168. Amsterdam: Vrije Universiteit.Google Scholar
Breitbart, W., Rosenfeld, B., Pessin, H., et al. (2000). Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. The Journal of the American Medical Association, 284(22), 29072911.CrossRefGoogle ScholarPubMed
Büchi, S. & Sensky, T. (1999). PRISM: Pictorial Representation of Illness and Self Measure. A brief nonverbal measure of illness impact and therapeutic aid in psychosomatic medicine. Psychosomatics, 40, 314320.CrossRefGoogle Scholar
Büchi, S., Sensky, T., Sharpe, L., et al. (1998). Graphic representation of illness: A novel method of measuring patients' perceptions of the impact of illness. Psychotherapy and Psychosomatics, 67, 222225.CrossRefGoogle ScholarPubMed
Cassell, E.J. (1991). The nature of suffering and the goals of medicine. New York: Oxford University Press.CrossRefGoogle Scholar
Cassell, E.J. (1999). Diagnosing suffering: A perspective. Annals of Internal Medicine, 131(7), 531534.CrossRefGoogle ScholarPubMed
Chaban, V., Shaheen, M. & Rapkin, A. (2009). Suffering Scale: A novel way to assess pain and suffering in patients with chronic pelvic pain. Annals of Epidemiology, 19, 651680.CrossRefGoogle Scholar
Chapman, C.R. & Gavrin, J. (1999). Suffering: The contributions of persistent pain. Lancet, 353(9171), 22332237.CrossRefGoogle ScholarPubMed
Chochinov, H.M., Wilson, K.G., Enns, M., et al. (1997). “Are you depressed?” Screening for depression in the terminally ill. The American Journal of Psychiatry, 154(5), 674676.Google ScholarPubMed
Cunny, K.A. & Perri III, M. (1991). Single-item vs. multiple-item measures of health-related quality of life. Psychological Reports, 69(1), 127130.CrossRefGoogle ScholarPubMed
Daar, A.S., Singer, P.A., Persad, D.L., et al. (2007). Grand challenges in chronic non-communicable diseases. Nature, 450(7169), 494496.CrossRefGoogle ScholarPubMed
Darby, P. (2006). Security, spatiality, and social suffering. Alternatives, 31, 453473.CrossRefGoogle Scholar
Dildy, S.P. (1996). Suffering in people with rheumatoid arthritis. Applied Nursing Research, 9(4), 177183.CrossRefGoogle ScholarPubMed
Flaherty, S.A. (1996). Pain measurement tools for clinical practice and research. AANA Journal, 64(2), 133140.Google ScholarPubMed
Fordyce, W.E. (1988). Pain and suffering: A reappraisal. The American Psychologist, 43(4), 276283.CrossRefGoogle ScholarPubMed
Gregory, R.J. (2012). Pruebas psicológicas: Historia, principios y aplicaciones, 6th ed. Naucalpan de Juárez, México: Pearson Educación.Google Scholar
Kahn, D.L. & Steeves, R.H. (1995). The significance of suffering in cancer care. Seminars in Oncology Nursing, 11(1), 916.CrossRefGoogle ScholarPubMed
Krikorian, A. & Limonero, J.T. (2012). An integrated view of suffering in palliative care. Journal of Palliative Care, 28(1), 4149.CrossRefGoogle ScholarPubMed
Krikorian, A., Limonero, J.T. & Corey, M.T. (2013 a). Suffering assessment: A review of available instruments for use in palliative care. Journal of Palliative Medicine, 16(2), 130142.CrossRefGoogle ScholarPubMed
Krikorian, A., Limonero, J.T., Román, J.P., et al. (2013 b). Predictors of suffering in advanced cancer. The American Journal of Hospice & Palliative Care, 31(5), 534542.CrossRefGoogle ScholarPubMed
Le Breton, D. (1999). Antropología del Dolor. Barcelona: Seix Barral.Google Scholar
Liverence, B.M. & Scholl, B.J. (2012). Discrete events as units of perceived time. Journal of Experimental Psychology: Human Perception and Performance, 38(3), 549554.Google ScholarPubMed
Lohr, K.N., Aaronson, N.K., Alonso, J., et al. (1996). Evaluating quality-of-life and health status instruments: development of scientific review criteria. Clinical Therapeutics, 18(5), 979992.CrossRefGoogle ScholarPubMed
Loeser, J.D. & Melzack, R. (1999). Pain: An overview. Lancet, 353(9164), 16071609.CrossRefGoogle ScholarPubMed
MacAdam, D.B. & Smith, M. (1987). An initial assessment of suffering in terminal illness. Palliative Medicine, 1, 3747.CrossRefGoogle Scholar
Melzack, R. (2000). From the gate to the neuromatrix. Revista de la Sociedad Española de Dolor, 7, 149156.Google Scholar
Merskey, H. & Bogduk, N. (1994). Pain terms, part III: A current list with definitions and notes on usage. In IASP task force on taxonomy. classification of chronic pain, 2nd ed., pp. 209214. Seattle: IASP Press.Google Scholar
Ogden, R.S., Wearden, J.H., Gallagher, D.T., et al. (2011). The effect of alcohol administration on human timing: A comparison of prospective timing, retrospective timing and passage of time judgments. Acta Psychologica, 138(1), 254262.CrossRefGoogle Scholar
Reeve, J., Lloyd-Williams, M., Payne, S., et al. (2009). Toward a reconceptualization of the management of distress in palliative care patients: The self-integrity model. Progress in Palliative Care, 17(2), 5160.CrossRefGoogle Scholar
Ruijs, K.D., Onwuteaka-Philipsen, B.D., van der Wal, G., et al. (2009). Unbearability of suffering at the end of life: The development of a new measuring device, the SOS–V. BMC Palliative Care, 8, 16.CrossRefGoogle ScholarPubMed
Saunders, C. & Baines, M. (1983). Living with dying: The management of terminal disease. Oxford: Oxford University Press.Google Scholar
Schulz, R., Monin, J.K., Czaja, S.J., et al. (2010). Measuring the experience and perception of suffering. The Gerontologist, 50, 774784.CrossRefGoogle ScholarPubMed
Scientific Advisory Committee (1994). Instrument review criteria. Medical Outcomes Trust Bulletin, 3, 14.Google Scholar
Sensky, T. (2010). Suffering. International Journal of Integrated Care, 10, 6668.CrossRefGoogle ScholarPubMed
Sherman, D.W. (1998). Reciprocal suffering: The need to improve family caregivers' quality of life through palliative care. Journal of Palliative Medicine, 1(4), 357366.CrossRefGoogle ScholarPubMed
Snowden, A., White, C.A., Christie, Z., et al. (2011). The clinical utility of the distress thermometer: A review. British Journal of Nursing, 20(4), 220227.CrossRefGoogle ScholarPubMed
van Hooft, S. (2000). The suffering body. Health, 4(2), 179195.CrossRefGoogle Scholar
Vargas, J.J., Vélez, M.C., Krikorian, A. (2008). Aspectos neurobiológicos, psicológicos y sociales del sufrimiento. Psicooncología, 5(2–3), 245255.Google Scholar
Wagner, K.-H. & Brath, H. (2012). A global view on the development of non-communicable diseases. Preventive Medicine, 54, S38S41.CrossRefGoogle ScholarPubMed
Wilson, K.G., Graham, I.D., Viola, R.A., et al. (2004). Structured interview assessment of symptoms and concerns in palliative care. Canadian Journal of Psychiatry, 49, 350358.CrossRefGoogle ScholarPubMed
Wilson, K.G., Chochinov, H.M., McPherson, C.J., et al. (2007). Suffering with advanced cancer. Journal of Clinical Oncology, 25(13), 16911697.CrossRefGoogle ScholarPubMed
World Health Organization (WHO) (1986). Cancer pain relief. Geneva, WHO. Available from http://www.who.int/cancer/palliative/painladder/en/.Google Scholar
World Health Association (WHO) (2014). Strengthening of palliative care as a component of integrated treatment within the continuum of care. Available from http://apps.who.int/gb/ebwha/pdf_files/EB134/B134_R7-en.pdf.Google Scholar