Caregiver evaluation of the quality of end-of-life care (CEQUEL) scale: the caregiver's perception of patient care near death

Philip C Higgins, Holly G Prigerson, Philip C Higgins, Holly G Prigerson

Abstract

Purpose: End-of-life (EOL) measures are limited in capturing caregiver assessment of the quality of EOL care. Because none include caregiver perception of patient suffering or prolongation of death, we sought to develop and validate the Caregiver Evaluation of Quality of End-of-Life Care (CEQUEL) scale to include these dimensions of caregiver-perceived quality of EOL care.

Patients and methods: Data were derived from Coping with Cancer (CwC), a multisite, prospective, longitudinal study of advanced cancer patients and their caregivers (N = 275 dyads). Caregivers were assessed before and after patient deaths. CEQUEL's factor structure was examined; reliability was evaluated using Cronbach's α, and convergent validity by the strength of associations between CEQUEL scores and key EOL outcomes.

Results: FACTOR ANALYSIS REVEALED FOUR DISTINCT FACTORS: Prolongation of Death, Perceived Suffering, Shared Decision-Making, and Preparation for the Death. Each item loaded strongly on only a single factor. The 13-item CEQUEL and its subscales showed moderate to acceptable Cronbach's α (range: 0.52-0.78). 53% of caregivers reported patients suffering more than expected. Higher CEQUEL scores were positively associated with therapeutic alliance (ρ = .13; p≤.05) and hospice enrollment (z = -2.09; p≤.05), and negatively associated with bereaved caregiver regret (ρ = -.36, p≤.001) and a diagnosis of Posttraumatic Stress Disorder (z = -2.06; p≤.05).

Conclusion: CEQUEL is a brief, valid measure of quality of EOL care from the caregiver's perspective. It is the first scale to include perceived suffering and prolongation of death. If validated in future work, it may prove a useful quality indicator for the delivery of EOL care and a risk indicator for poor bereavement adjustment.

Conflict of interest statement

Competing Interests: The authors have declared that no competing interests exist.

Figures

Figure 1. Scree plot of final four-factor,…
Figure 1. Scree plot of final four-factor, thirteen-item model.

References

    1. Zhang B, Nilsson ME, Prigerson HG (2012) Factors important to patients' quality of life at the end of life. Arch Intern Med 172: 1133–1142.
    1. Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre LM, et al. (2000) In search of a good death: observations of patients, families, and providers. Ann Intern Med 132: 825–832.
    1. Patrick DL, Engelberg RA, Curtis JR (2001) Evaluating the quality of dying and death. J Pain Symptom Manage 22: 717–726.
    1. Tilden VP, Tolle S, Drach L, Hickman S (2002) Measurement of quality of care and quality of life at the end of life. Gerontologist 42: 71–80.
    1. Addington-Hall J, McPherson C (2001) After death interviews with surrogates/bereaved family members: some issues of validity. J Pain Symptom Manage 22: 784–790.
    1. Fowler FJ, Coppola KM, Teno JM (1999) Methodological challenges for measuring quality of care at the end of life. J Pain Symptom Manage 17: 114–119.
    1. Hinton J (1996) How reliable are relatives' retrospective reports of terminal illness? Patients' and relatives' accounts compared. Soc Sci Med 43: 1229–1236.
    1. Heyland DK, Dodek P, Rocker G, Groll D, Gafni A, et al.. (2006) What matters most in end-of-life care: perceptions of seriously ill patients and their family members. CMAJ 174. Available: . Accessed 2013 May 8.
    1. Russ AJ, Kaufman SR (2005) Family perceptions of prognosis, silence, and the ‘suddenness’ of death. Cult Med Psychiatry 29: 103–123.
    1. Teno JM, Clarridge BR, Casey V, Edgman-Levitan S, Fowler J (2004) Family perspectives on end-of-life care at the last place of care. JAMA 291: 88–93.
    1. Teno JM, Casey VA, Welch LC, Edgman-Levitan S (2001) Patient-focused, family-centered end-of-life medical care: views of the guidelines and bereaved family members. J Pain Symptom Manage 22: 738–751.
    1. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, et al. (2000) Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 284: 2476–2482.
    1. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, Grambow S, et al. (2001) Preparing for the end of life: preferences of patients, families, physicians, and other care providers. J Pain Symptom Manage 22: 727–737.
    1. Emanuel LL, Alpert HR, Baldwin DC, Emanuel EJ (2000) What terminally ill patients care about: towards a validated construct of patients' perspectives. J Palliat Med 3: 419–431.
    1. Singer PA, Martin DK, Kelner M (1999) Quality end-of-life care: patients' perspectives. JAMA 281: 163–168.
    1. Hales S, Zimmerman C, Rodin G (2010) The quality of dying and death: a systematic review of measures. Palliat Med 24: 127–144.
    1. Steinhauser KE, Bosworth HB, Clipp EC, McNeilly M, Christakis NA, et al. (2002) Initial assessment of a new instrument to measure quality of life at the end of life. J Palliat Med 5: 829–841.
    1. Curtis JR, Patrick DL, Engelberg RA, Norris K, Asp C, et al. (2002) A measure of the quality of dying and death: initial validation using after-death interviews with family members. J Pain Symptom Manage 24: 17–31.
    1. Byock IR, Merriman MP (1998) Measuring quality of life for patients with terminal illness: the Missoula-VITAS quality of life index. Palliat Med 12: 231–244.
    1. Wright AA, Zhang B, Ray A, Mack JW, Trice E, et al. (2008) Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 300: 1665–1673.
    1. Wright AA, Mack JW, Kritek PA, Balboni TA, Massaro AF, et al. (2010) Influence of patients' preferences and treatment site on cancer patients' end-of-life care. Cancer 116: 4656–4663.
    1. Gries CJ, Curtis JR, Wall RJ, Engelberg RA (2008) Family member satisfaction with end-of-life decision making in the ICU. Chest 133: 704–712.
    1. Koop PM, Strang VR (2003) The bereavement experience following home-based family caregiving for persons with advanced cancer. Clin Nurs Res 12: 127–144.
    1. Ott CH, Lueger RJ, Kelber ST, Prigerson HG (2007) Spousal bereavement in older adults: common, resilient, and chronic grief with defining characteristics. J Nerv Ment Dis 195: 332–341.
    1. Houts PS, Lipton A, Harvey HA, Simmonds MA, Bartholomew MJ (1989) Predictors of grief among spouses of deceased cancer patients. J Psychosoc Oncol 7: 113–126.
    1. McDonagh JR, Elliott TB, Engelberg RA, Treece PD, Shannon SE, et al. (2004) Family satisfaction with family conferences about end-of-life care in the intensive care unit: increased proportion of family speech is associated with increased satisfaction. Crit Care Med 32: 1484–1488.
    1. Hanson LC, Danis M, Garrett J (1997) What is wrong with end-of-life care? Opinions of bereaved family members. J Am Geriatr Soc 45: 1339–1344.
    1. Norton SA, Tilden VP, Tolle SW, Nelson CA, Talamantes Eggman S (2003) Life support withdrawal: communication and conflict. Am J Crit Care 12: 548–555.
    1. Wendler D, Rid A (2011) Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med 154: 336–346.
    1. Barry LC, Kasl SV, Prigerson HG (2002) Psychiatric disorders among bereaved persons: the role of perceived circumstances of death and preparedness for death. Am J Geriatr Psychiatry 10: 447–457.
    1. Hebert RS, Schulz R, Copeland V, Arnold RM (2008) What questions do family caregivers want to discuss with health care providers in order to prepare for the death of a loved one? An ethnographic study of caregivers of patients at end of life. J Palliat Med 11: 476–483.
    1. Fried TR, Bradley EH, O'Leary J (2003) Prognosis communication in serious illness: perceptions of older patients, caregivers, and clinicians. J Am Geriatr Soc 51: 1398–1403.
    1. Wright AA, Keating NL, Balboni TA, Matulonis UA, Block SD, et al. (2010) Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers' mental health. J Clin Oncol 28: 4457–4464.
    1. Hudson PL, Trauer T, Graham S, Grande G, Ewing G, et al. (2010) A systematic review of instruments related to family caregivers of palliative care patients. Palliat Med 24: 656–668.
    1. Teno JM, Claridge B, Casey V, Edgman-Levitan S, Fowler J (2001) Validation of Toolkit After-Death Bereaved Family Member Interview. J Pain Symptom Manage 22: 752–758.
    1. Cherlin E, Fried T, Prigerson HG, Schulman-Green D, Johnson-Hurzeler R, et al. (2005) Communication between physicians and family caregivers about care at the end of life: when do discussions occur and what is said? J Palliat Med 8: 1176–1185.
    1. Emanuel LL, Alpert HR, Emanuel EE (2001) Concise screening questions for clinical assessments of terminal care: the needs near the end-of-life care screening tool. J Palliat Med 4: 465–474.
    1. DeCoster J (2005) Scale construction notes, 2005. Available: . Accessed 7 May 2013.
    1. Pargament KI, Koenig HG, Perez LM (2000) The many methods of religious coping: development and initial validation of the RCOPE. J Clin Psychol 56: 519–543.
    1. Pargament KI, Smith BW, Koenig HG, Perez L (1998) Patterns of positive and negative religious coping with major life stressors. J Sci Study Relig 37: 710–724.
    1. Pearce MJ, Singer JL, Prigerson HG (2006) Religious coping among caregivers of terminally ill cancer patients: main effects and psychosocial mediators. J Health Psychol 11: 743–759.
    1. Kris AE, Cherlin EJ, Prigerson H, Carlson MDA, Johnson-Hurzeler R, et al. (2006) Length of hospice enrollment and subsequent depression in family caregivers: 13-month follow-up study. Am J Geriatr Psychiatry 14: 264–269.
    1. Azoulay E, Pochard F, Kentish-Barnes N, Chevret S, Aboab J, et al. (2005) Risk of post-traumatic stress symptoms in members of intensive care unit patients. Am J Respir Crit Care Med 171: 987–994.
    1. Akiyama A, Numata K, Mikami H (2010) Importance of end-of-life support to minimize caregiver's regret during bereavement of the elderly for better subsequent adaptation to bereavement. Arch Gerontol Geriatr 50: 175–178.
    1. Latham AE, Prigerson HG (2004) Suicidality and bereavement: complicated grief as psychiatric disorder presenting greatest risk for suicidality. Suicide Life Threat Behav 34: 350–362.
    1. Prigerson HG, Horowitz MJ, Jacobs SC, Parkes CM, Aslan M, et al. (2009) Prolonged grief disorder: psychometric validation of criteria proposed for DSM-V and ICD-11. PLoS Med 6 Available: . Accessed 2013 April 12.
    1. Prigerson HG, Cherlin E, Chen JH, Kasl SV, Hurzeler R, et al. (2003) The Stressful Caregiving Adult Reactions to Experiences of Dying (SCARED) Scale: a measure for assessing caregiver exposure to distress in terminal care. Am J Geriatr Psychiatry 11: 309–319.
    1. Beck AT, Weissman A, Lester D, Trexler L (1974) The measurement of pessimism: the Hopelessness Scale. J Consult Clin Psychol 42: 861–865.
    1. First MB, Spitzer RL, Gibbon M, Williams JBW (1995) Structured Clinical Interview for the DSM-IV Axis I Disorders—Patient Edition (SCID-I/P) version 2.0. New York, NY: New York State Psychiatric Institute.
    1. Williams JB, Gibbon M, First MB, Spitzer RL, Davies M, et al. (1992) The Structured Clinical Interview for DSM-III-R (SCID). II. Multisite test-retest reliability. Arch Gen Psychiatry 49: 630–636.
    1. Muthén B, du Toit SHC, Spisic D (1997) Robust inference using weighted least squares and quadratic estimating equations in latent variable modeling with categorical and continuous outcomes. Available: . Accessed 2013 February 11.
    1. Muthén LK (2011) Binary data and factor analysis. Available: . Accessed 2013 February 11.
    1. Fabrigar LR, Wegener DT, MacCallum RC, Strahan EJ (1999) Evaluating the use of exploratory factor analysis in psychological research. Psychol Methods 4: 272–299.
    1. Cattell RB (1966) The scree test for the number of factors. Multivar Behav Res 1: 245–276.
    1. Hayton JC, Allen DG, Scarpello V (2004) Factor retention decisions in exploratory factor analysis: a tutorial on parallel analysis organizational research methods. 7: 191–205.
    1. Yu CY (2002) Evaluating cutoff criteria of model fit indices for latent variable models with binary and continuous outcomes. Available: . Accessed 2013 May 8.
    1. Cortina JM (1993) What is coefficient alpha? An examination of theory and applications. J Applied Psychology 78: 98–104.
    1. Mack JW, Block SD, Nilsson M, Wright A, Trice E, et al. (2009) Measuring therapeutic alliance between oncologists and patients with advanced cancer: the Human Connection Scale. Cancer 115: 3302–3311.
    1. National Hospice and Palliative Care Organization (2012) NHPCO Facts and Figures: Hospice Care in America, 2012 Edition. Available: . Accessed 2013 March 20.
    1. Torges CM, Stewart AJ, Nolen-Hoeksema S (2008) Regret resolution, aging, and adapting to loss. Psychol Aging 23: 169–180.
    1. Loggers ET, Starks H, Shannon-Dudley M, Back AL, Appelbaum FR, et al. (2013) Implementing a death with dignity program at a comprehensive cancer center. NEJM 368: 1417–1424.
    1. Ganzini L, Goy ER, Dobscha SK, Prigerson HG (2009) Mental health outcomes of family members of Oregonians who request physician aid in dying. J Pain Symptom Manage 38: 807–815.

Source: PubMed

Patrocinadores y Colaboradores

Condiciones médicas

Intervenciones de drogas

3
Suscribir