Living in the Memory of Loss: Exploring Aggressive, Palliative, and Hospice Care and Surviving Loved Ones

Abstract

This study is predominantly a quantitative investigation into the model of care received by deceased loved ones and its impact on the grief reactions of their caregiver. Grief is conceptualized to include both positive reactions, as finding comfort in memories, and negative reactions, as becoming depressed. Guiding theoretical paradigms are studied with associations between positivism and aggressive care; social constructivism and palliative care; and transpersonal theory and hospice care reviewed. A Continuum of End-of-Life Care Services is proposed that integrates all the models of care. The Inventory of Complicated Grief-Revised assessed the incidence of complicated grief among the surviving caregivers. A newly created scale, the Positive Grief Scale, assessed the incidence of positive grief. Additional data were analyzed regarding the delivery of best practices in end-of-life care and their helpfulness. Analyses included the impact of length of engagement with model of care and demographic risks factors for complicated grief. Four qualitative questions were included in the questionnaire. The sample included 180 caregivers whose loved ones received services from a local cancer support agency. A mailed questionnaire was used to collect the data. Independent sample t-tests, ANOVA, chi square tests, correlations, and frequencies were employed. Factor analyses were performed on the positive grief scale to obtain initial validity data. Results failed to confirm any significant difference among the three models of care and grief reactions. Demographic factors and length of stay in hospice also were not significantly predictive of either positive or negative grief. Best practices, including emotional and spiritual support; information on dying and bereavement; community resource referrals; and availability of the health care provider were significantly more likely to be present in hospice and rated more helpful by the participants. Multidisciplinary teams work was also substantiated. Qualitative data appeared to confirm the simultaneous presence of positive and negative grief. The Continuum of Health Care Services was revisited in terms of the results. Implications for social work practice, policy advocacy, and further research are examined. This research adds to the body of knowledge about what practices supports surviving caregivers to live well after the death of a loved one.