Decision Conflict and Trajectories of Decisional Regrets as Well as Their Impact on Depressive Symptoms during Bereavement for Family Surrogate Decision Makers of Terminally Ill Cancer Patients

A substantial majority of patients cannot make end-of-life (EOL) care decisions for themselves due to physical deterioration or mental incapacity. Current practice strives to promote incapacitated patients’ values and goals of EOL care by heavily relying on surrogate decision makers (SDMs). However, SDMs carry substantial psychological distress that extends into bereavement. In “value-laden” or “preference-sensitive” decisions such as EOL-care decisions, reducing decision conflict and regret has been recognized as important and essential, particularly when the outcome is unfavorable. However, decision conflict, decisional regrets, and their impacts on bereavement outcomes, such as depressive distress have never been evaluated for SDMs of terminally ill cancer patients in Taiwan or Asian countries, where the Confucian cultural value of filial piety and the relative power of family are strongly exercised in EOL-care decision-making. Even research around the world in this field is also limited with no longitudinal studies and the interval between making treatment decisions and measures of decision conflict and regrets ranging days to years. Furthermore, decision regret was treated as a homogenous phenomenon and the individualized process was neglected. Therefore, the purposes of this prospective, longitudinal study are to (1) explore the decision conflict and depressive symptoms inherent in surrogate EOL decision-making for terminally ill cancer patients, (2) identify the unique trajectories of decisional-regrets post-decision making, (3) characterize SDMs within each decisional-regret trajectory, in terms of decision conflict and depressive symptoms experienced when EOL decisions are made, and postloss perceived quality of death and dying, and (4) evaluate depressive symptoms experienced by SDMs over the first two years of bereavement across different trajectories of decisional-regrets. A prospective, longitudinal study will be conducted over three years on a convenience sample of 251 SDMs of terminally ill cancer patients. Well-established instruments will be used to measure decision conflict (Decision Conflict Scale; DCS), decisional regrets (Decision Regret Scale; DRS), depressive symptoms (CESD), and covariates for decision conflict (SDMs’ perceived confidence in acting as a SDM, advance care planning with the patient, physician-SDM communication) and decisional regrets (perceived quality of death and dying for their loved one) as literature suggested. SDMs will be interviewed to measure their decision conflict and its covariates as well as depressive symptoms experienced during the EOL-care decision-making once EOL-care decisions are considered and SDMs will be continually followed up every two weeks until the decision is made, thereafter, monthy through the 1st, 3rd, 6th, 13th, 18th, and 24th month post-bereavement to measure decisional conflicts and depressive symptoms. Multivariate logistic and linear regression models with the generalized estimating equation (GEE) will be conducted to (1) examine the changes in moderate-to-high decision conflict (DCS scores＞25) and severe depressive symptoms (CESD scores ＞16) over the EOL care decision-making process (Aim 1), and (2) evaluate depressive symptoms experienced by SDMs over their first two years of bereavement across different trajectories of decisional-regrets (Aim 4), respectively. Growth latent class growth analysis with a continuous latent class indicator (total DRS scores) will be conducted to identify the unique trajectories of decisional-regrets post decision-making (Aim 2). Multinomial logistic regression model will be used to characterize SDMs within each decisional-regret trajectory (Aim 3). Findings from this proposed study may shed light on directions of clinical interventions and health policies aimed at fostering healthcare professionals-SDMs communication to avoid conflict and regrets for their surrogate EOL-care decision, and to facilitate the grieving process and bereavement adjustment.

Project ID:PC10507-0287
External Project ID:MOST105-2314-B182-040-MY3