Project Details
Abstract
To improve end-of-life (EOL) care, the U.S. Institute of Medicine (IOM) advocates a good
death that is “in accord with the patients' and families' wishes.” Adequate knowledge of
prognosis is a prerequisite for planning appropriate EOL care that supports one’s own
values and limits the use of “futile” treatments that prolong unnecessary suffering, thus
improving quality of life (QOL) at EOL. The literature and
results from our own studies indicate that only a minority of terminally ill cancer patients is
aware of their prognosis and that EOL care discussions between healthcare professionals
and terminally ill cancer patients and/or family caregivers remain exceptional rather than
common. Therefore, current EOL care does not conform well to individual patients’ EOL
care preferences, suggesting a target for improving care quality. However, only a handful of
interventional studies have targeted improving the quality of EOL care, and their outcomes
did not comprehensively reflect the essential goals of EOL care suggested by the IOM and
World Health Organization. Furthermore, few studies have been theoretically based and
tailored to participants’ readiness to engage in advance care planning (ACP).
Therefore, the primary objectives of this 5-year randomized controlled trial of a theorybased,
tailored, multifaceted, interactive ACP intervention are to examine the extent to which
the proposed ACP intervention will (1) increase the congruence between terminally ill cancer
patients’ preferred and actual EOL care, (2) improve QOL, depressive and anxiety
symptoms of patients and family caregivers during
the patient’s dying process, and (3) enhance family caregivers’ bereavement adjustment.
The secondary objectives are to determine the effectiveness of the proposed ACP
intervention (1) in facilitating patients’ prognostic awareness and EOL care discussions
among patients, family caregivers, and physicians; (2) in increasing the extent of patientcaregiver
agreement on preferences for EOL care; and (3) in reducing aggressive EOL care
treatments for terminally ill cancer patients. We hypothesize that the proposed ACP
intervention will (1) facilitate patients’ prognostic awareness; EOL care discussions among
patients, family caregivers, and physicians; and patient-caregiver agreement on preferences
for EOL care as the patient’s death approaches; (2) reduce aggressive healthcare resource
utilization at EOL; (3) increase the congruence between patients’ preferred and actual EOL
care; (4) improve QOL, depressive and anxiety symptoms of patients and family caregivers
during the patient’s dying process; and (5) enhance family caregivers’ bereavement
adjustment. A convenience sample of 522 patient-caregiver dyads will be randomly and
equally assigned to the intervention or attention-control groups. Participants, investigators,
data collectors, and data analysts will be blinded to intervention assignments. Patients and
caregivers in each dyad in the intervention group will be individually and separately
assessed about readiness to engage in ACP by a trained, master’s-prepared ACP
interventionist experienced in palliative care. Tailored interventions will be offered according
to participants’ stage of readiness to engage in ACP based on the Transtheoretical Model.
The intervention will include two decision aids (a workbook and a video) designed to
enhance participants’ understanding of the essential elements of ACP as well as the
probability of survival and consequences of life-sustaining treatment. The goal of the ACP
intervention is to facilitate patients, family caregivers, and physicians discussing and
understanding the patient's prognosis and preferences for EOL care by appropriately
weighting the benefits and burdens of medical treatments at EOL. During these discussions,
patients’ EOL care preferences will be clearly defined and documented to later guide the
新增日期︰2015/01/05 確認日期︰ 最新修改日期︰2015/01/05
國研院科技政策中心製表╱印製日期:2015/01/05
patient's primary physician in EOL care decisions. EOL care preferences will be revisited at
least monthly to ascertain any changes over time. The attention-control group will be given
general social support and passive education on symptom management by a bachelor’sprepared
nurse not experienced in palliative care. Validated instruments will be used to
measure preferences for prognostic information and EOL care, confounding factors
(symptom distress, functional dependency, and social support), and outcome variables
(QOL, depressive and anxiety symptoms, and bereavement grief). Data will be collected
every 3 weeks until the patient’s death. Bereavement interviews will be conducted at 1, 3, 6,
and 13 months after the patient’s death; 13 months was chosen to avoid contamination from
anniversary grief reactions. After each patient’s death, data on use of healthcare services at
EOL will be collected from medical records.
The effectiveness of the ACP intervention will be examined using intention-to-treat analyses
with generalized estimating equations (GEE). Besides the percentage of overall agreement
between patients’ preferred and actual EOL care, kappa coefficients will be computed to
correct for the agreement that can be expected by chance alone. Multivariate logistic
regression with the GEE method will be used to examine the impact of the ACP intervention
on improving the congruence between patients’ preferred and actual EOL care, increasing
prognostic awareness, EOL care discussions, and patient-caregiver agreement on
preferences for EOL care, and decreasing aggressive healthcare resource utilization at EOL
with simultaneous adjustment for confounding factors. Multivariate multiple linear regression
with the GEE method will be used to test the effectiveness of intervention in improving
patients’ and family caregivers’ QOL and psychological well-being (anxiety and depressive
symptoms) before the patient’s death, and family caregiver bereavement outcomes (QOL,
depressive symptoms, and grief reactions). Results from this study will contribute to
improving EOL care and policies that ensure appropriate EOL care and efficient use of
healthcare resources to honor cancer patients’ preferences for EOL care.
Project IDs
Project ID:PG10501-0289
External Project ID:NHRI-EX105-10208PI
External Project ID:NHRI-EX105-10208PI
Status | Finished |
---|---|
Effective start/end date | 01/01/16 → 31/12/16 |
Keywords
- End-of-life care
- preferences of end-of-life care
- randomized controlled trial
- terminally ill cancer patients
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