Experiences and Attitudes of Patients With Terminal Cancer and Their Family Caregivers Toward the Disclosure of Terminal Illness Young Ho Yun, Yong Chol Kwon, Myung Kyung Lee, Woo Jin Lee, Kyung Hae Jung, Young Rok Do, Samyong Kim, Dae Seog Heo, Jong Soo Choi, and Sang Yoon Park J Clin Oncol 2010, 28: R2 강성욱 / prof. 백선경

Introduction Patients with terminal cancer Most important end-of-life (EOL) issues : how health care professionals communicate their prognosis to them. Disclosing the news that a cancer has reached its terminal stage Family members are given decision-making authority in some cultures In 1990, 80% of Korean physicians preferred to disclose the bad news to patients

Introduction Purpose The experiences of cancer patients and their family caregivers who became aware that the cancer was terminal, how they became aware, and how they felt about disclosure of the information

Patients and methods The Study to Understand Risks, Priority and Issues at End-of- Life (SURPRISE) Patients with terminal cancer Ethical issues, care burden, and quality of care at the EOL Prospective cohort study from 11 university hospitals and the National Cancer Center Eligibility Age 18 years or older Diagnosed as terminal at an outpatient or inpatient facility Capable of filling out questionnaires or communicating with an interviewer Competent enough to understand the intent of the study Provide informed consent

Patients and methods Data collection The baseline time point of the study The physician judged that the cancer was refractory to conventional anticancer therapy The patient was likely to die within months Followed for 2 months by mail Family caregivers were interviewed by telephone about 3 months after the patient died

Patients and methods Questions Awareness that the illness was terminal, how the awareness was acquired, feelings on learning the diagnosis, and attitudes toward disclosure of the terminal status Demographic information, included EORTC QLQ-C30 The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core-30(EORTC QLQ-C30) Five multi-item functional scales : physical, role, emotional, cognitive, and social function One global health status/QOL scale Three symptom scales : fatigue, pain, and nausea/vomiting Six single items : dyspnea, insomnia, appetite loss, constipation, diarrhea and financial difficulties

Patients and methods Statistical Analysis t test or x 2 test : to determine significant differences in dependent and independent variables between the patient and caregiver groups Kappa coefficient : to evaluate the strength of agreement between their observations Multivariable logistic regression analysis SAS version 9.1 (SAS Institute, Cary, NC)

RESULTS

Men Older Less educated Lower employment rate

Discussion Diclosure rate 58% of patients and 83% of family caregivers Some Western studies : 30%~40% of patients and approximately 80% of family members Emotional suffering : Elizabeth Kubler-Ross’s grief model Misery, depression, frustration, no thought, feeling of loss, and difficulty in controlling their feelings Recent article : emotional distress is not associated with EOL discussions  simple dimensions of emotional distress, such as major depressive disorder and worry But terminal cancer patients reveal an array of more complex emotional states

Discussion Disclosure manner Directly  significantly better self-reported QOL Indirecrly : by chance or guessing from a worsening condition  increases distress no difference in ECOG PS score or survival between two groups Preference for disclosure Patient paid the treatment cost Employed at the time of their cancer diagnosis The economic burden of disease is important

Discussion Possible adverse outcomes of unawareness Dissatisfaction with the medical system Prolonged and painful death due to unwarranted invasive care Limitation Not represent the general population of terminally ill patients and their family caregivers : only hospital in & out patients  possibility of selection bias Not anonymous questionnaire : patients answered according to family expectations  underestimation Not follow up on the emotional responses

Conclusion Most patients with terminal cancer and their family caregivers preferred disclosure. Patients who knew of their terminal diagnosis had a lower rate of emotional distress and a higher health-related quality of life.