Abstract
BackgroundMany patients with advanced cancer receive chemotherapy close to death and are referred too late to palliative or hospice care, and therefore die under therapy or in intensive care units. Oncologists still have difficulties in involving patients appropriately in decisions about limiting tumor-specific or life-prolonging treatment.ObjectiveThe aim of this Ethics Policy for Advanced Care Planning and Limiting Treatment Study is to develop an ethical guideline for end-of-life decisions and to evaluate the impact of this guideline on clinical practice regarding the following target goals: reduction of decisional conflicts, improvement of documentation transparency and traceability, reduction of distress of the caregiver team, and better knowledge and consideration of patients’ preferences.MethodsThis is a protocol for a pre-post interventional study that analyzes the clinical practice on treatment limitation before and after the guideline implementation. An embedded researcher design with a mixed-method approach encompassing both qualitative and quantitative methods is used. The study consists of three stages: (1) the preinterventional phase, (2) the intervention (development and implementation of the guideline), and 3) the postinterventional phase (evaluation of the guideline’s impact on clinical practice). We evaluate the process of decision-making related to limiting treatment from different perspectives of oncologists, nurses, and patients; comparing them to each other will allow us to develop the guideline based on the interests of all parties.ResultsThe first preintervention data of the project have already been published, which detailed a qualitative study with oncologists and oncology nurses (n=29), where different approaches to initiation of end-of-life discussions were ethically weighted. A framework for oncologists was elaborated, and the study favored an anticipatory approach of preparing patients for forgoing therapy throughout the course of disease. Another preimplementational study of current decision-making practice (n=567 patients documented) demonstrated that decisions to limit treatment preceded the death of many cancer patients (62/76, 82% of deceased patients). However, such decisions were usually made in the last week of life, which was relatively late.ConclusionsThe intervention will be evaluated with respect to the following endpoints: better knowledge and consideration of patients’ treatment wishes; reduction of decisional conflicts; improvement of documentation transparency and traceability; and reduction of the psychological and moral distress of a caregiver team.Registered Report IdentifierRR1-10.2196/9698
Highlights
MethodsDecision-making to limit a tumor-specific and life-prolonging treatment in patients with advanced cancer is one of the most difficult tasks in end-of-life care and is often accompanied by psychological and ethical challenges
The intervention will be evaluated with respect to the following endpoints: better knowledge and consideration of patients’ treatment wishes; reduction of decisional conflicts; improvement of documentation transparency and traceability; and reduction of the psychological and moral distress of a caregiver team
We initiated a monocentric interventional study aimed at developing an ethical guideline for end-of-life decision-making, with a goal to increase oncologists’ awareness of patients’ treatment preferences, to increase patients’ involvement in decision-making, and to reduce psychological and moral distress within a caregiver team
Summary
MethodsDecision-making to limit a tumor-specific and life-prolonging treatment in patients with advanced cancer is one of the most difficult tasks in end-of-life care and is often accompanied by psychological and ethical challenges. Many patients with advanced cancer receive aggressive chemotherapy close to death and are referred to palliative or hospice care too late, and die under therapy or in the intensive care unit [1,2,3]. Oncologists still have difficulties in discussing treatment limitation with their patients and feel unsure about when and how to initiate such discussions [8,9] Against this background, we initiated a monocentric interventional study aimed at developing an ethical guideline for end-of-life decision-making, with a goal to increase oncologists’ awareness of patients’ treatment preferences, to increase patients’ involvement in decision-making, and to reduce psychological and moral distress within a caregiver team. Many patients with advanced cancer receive chemotherapy close to death and are referred too late to palliative or hospice care, and die under therapy or in intensive care units. Oncologists still have difficulties in involving patients appropriately in decisions about limiting tumor-specific or life-prolonging treatment
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