Terminal cancer patients’ and their primary caregivers’ attitudes toward hospice/palliative care and their effects on actual utilization: A prospective cohort study

Background: Previous studies on hospice/palliative care indicated that patients’ socio-demographic factors, disease status, and availability of health-care resources were associated with hospice/palliative care utilization. However, the impact of family caregivers on hospice/palliative care utilization has not been thoroughly investigated. Aim: To evaluate the association between attitudes toward hospice/palliative care of both patients with terminal cancer (defined as progressive, advanced cancer in which the patient will die within months) and their family caregivers and utilization of inpatient hospice/palliative care facilities. Design: A prospective observational cohort study was performed in 12 hospitals in South Korea. Attitude toward hospice/palliative care was assessed immediately after terminal cancer diagnosis. After the patient’s death, caregivers were interviewed whether they utilized hospice/palliative care facilities. Participants: A total of 359 patient–caregiver dyads completed baseline questionnaires. After the patients’ death, 257 caregivers were interviewed. Results: At the baseline questionnaire, 137/359 (38.2%) patients and 185/359 (51.5%) of caregivers preferred hospice/palliative care. Preference for hospice/palliative care was associated with awareness of terminal status among both patients (adjusted odds ratio: 1.87, 95% confidence interval: 1.16–3.03) and caregivers (adjusted odds ratio: 2.14, 95% confidence interval: 1.20–3.81). Religion, metastasis, and poor performance status were also independently associated with patient preference for hospice/palliative care. At the post-bereavement interview, 104/257 (40.5%) caregivers responded that they utilized hospice/palliative care facilities. Caregiver’s preferences for hospice/palliative care were significantly associated with actual utilization (adjusted odds ratio: 2.67, 95% confidence interval: 1.53–4.67). No patient-related factors were associated with hospice/palliative care utilization. Conclusion: Promoting awareness of prognosis and to improve communication between doctors and families is important for facilitating the use of hospice/palliative care.

[1]  E. Bruera,et al.  The association between in-patient death, utilization of hospital resources and availability of palliative home care for cancer patients , 2013, Palliative medicine.

[2]  D. Heo,et al.  Impact of awareness of terminal illness and use of palliative care or intensive care unit on the survival of terminally ill patients with cancer: prospective cohort study. , 2011, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[3]  E. Bélanger,et al.  Shared decision-making in palliative care: A systematic mixed studies review using narrative synthesis , 2011, Palliative medicine.

[4]  Hung-Ming Wang,et al.  A population‐based study on the determinants of hospice utilization in the last year of life for Taiwanese cancer decedents, 2001–2006 , 2010, Psycho-oncology.

[5]  D. Shin,et al.  The Current Status of Utilization of Palliative Care Units in Korea: 6 Month Results of 2009 Korean Terminal Cancer Patient Information System , 2010 .

[6]  Y. Yun,et al.  Current Status and Activation Plan of Hospice Palliative Care in Korea - Based on Hospice Palliative Care Facilities Survey , 2010 .

[7]  K. Hirschman,et al.  Advance care planning and hospice enrollment: who really makes the decision to enroll? , 2010, Journal of palliative medicine.

[8]  S. Kaasa,et al.  Which patients with cancer die at home? A study of six European countries using death certificate data. , 2010, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[9]  D. Heo,et al.  Experiences and attitudes of patients with terminal cancer and their family caregivers toward the disclosure of terminal illness. , 2010, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[10]  Jane C Weeks,et al.  End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. , 2010, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[11]  A. Glass,et al.  A Cross-Cultural Comparison of Hospice Development in Japan, South Korea, and Taiwan , 2010, Journal of cross-cultural gerontology.

[12]  Mark T Hegel,et al.  Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial. , 2009, JAMA.

[13]  K. Kahn,et al.  Discussions with physicians about hospice among patients with metastatic lung cancer. , 2009, Archives of internal medicine.

[14]  P. Maciejewski,et al.  Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. , 2008, JAMA.

[15]  A. Abernethy,et al.  Preference for place of care and place of death in palliative care: are these different questions? , 2008, Palliative medicine.

[16]  J. Berger,et al.  Surrogate Decision Making: Reconciling Ethical Theory and Clinical Practice , 2008, Annals of Internal Medicine.

[17]  B. Carlin,et al.  Access to home-based hospice care for rural populations: Identification of areas lacking service. , 2006, Journal of palliative medicine.

[18]  E. Ciemins,et al.  An Evaluation of the Advanced Illness Management (AIM) Program: Increasing hospice utilization in the San Francisco Bay area. , 2006, Journal of palliative medicine.

[19]  D. Wendler,et al.  The accuracy of surrogate decision makers: a systematic review. , 2006, Archives of internal medicine.

[20]  I. Higginson,et al.  Factors influencing death at home in terminally ill patients with cancer: systematic review , 2006, BMJ : British Medical Journal.

[21]  P. Brown,et al.  Impacting quality of life for patients with advanced cancer with a structured multidisciplinary intervention: a randomized controlled trial. , 2006, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[22]  J. Teno,et al.  Making Difficult Decisions About Hospice Enrollment: What Do Patients and Families Want to Know? , 2005, Journal of the American Geriatrics Society.

[23]  S. Fukui,et al.  Predictors of place of death for Japanese patients with advanced‐stage malignant disease in home care settings: A nationwide survey , 2004, Cancer.

[24]  Joshua Hauser,et al.  Supporting family caregivers at the end of life: "they don't know what they don't know". , 2004, JAMA.

[25]  Sang‐wook Lee,et al.  The attitudes of cancer patients and their families toward the disclosure of terminal illness. , 2004, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[26]  W. Haley,et al.  Decisions for Hospice Care in Patients with Advanced Cancer , 2003, Journal of the American Geriatrics Society.

[27]  Peter H. Ditto,et al.  Projection in surrogate decisions about life-sustaining medical treatments. , 2001, Health psychology : official journal of the Division of Health Psychology, American Psychological Association.

[28]  W. Knaus,et al.  Influence of Patient Preferences and Local Health System Characteristics on the Place of Death , 1998, Journal of the American Geriatrics Society.

[29]  E. Emanuel,et al.  Proxy decision making for incompetent patients. An ethical and empirical analysis. , 1992, JAMA.

[30]  Robert Dunlop,et al.  Preferred versus actual place of death: a hospital palliative care support team experience , 1989 .

[31]  Dong-Wan Kim,et al.  Surrogate decision-making in Korean patients with advanced cancer: a longitudinal study , 2012, Supportive Care in Cancer.