Table 2 Summary of ethical challenges and recommendations.
From: Advance care planning in Parkinson’s disease: ethical challenges and future directions
Ethical challenge | Recommendations |
|---|---|
Initiating ACP before cognitive dysfunction without undermining the therapeutic alliance | Normalize that ACP is part of a standard, routine and periodic practice |
Communicate the rationale behind early ACP (e.g., to maximize the chances that the patient is participatory given the risk of future cognitive dysfunction, to reduce surrogate distress, and to ensure that care is goal-concordant) | |
Establish specific appointments for ACP | |
Emphasize that the practice is dynamic (i.e., not a one-time event) | |
Integrate chaplains into discussions | |
Explore and address psychosocial distress | |
Assure the patient that his or her interests are and will remain the priority | |
Conceptualizing past, current, and future selves to ensure that care is goal-concordant | Explore the patient’s values early in the course of the doctor-patient relationship |
Investigate pertinent elements to the patient’s personhood (e.g., hobbies, professions, meaning, relationships, perspectives on medicine/illness) | |
Ensure that ACP discussions are accompanied by loved ones who understand the patient’s history, values and preferences | |
Preparing patients and caregivers for future decisions across a variety of outcomes for DBS | Inform the patient about all probable outcomes |
Elicit preferences for life and care in the current clinical situation with and without DBS | |
Explore and support the needs of the caregivers | |
Develop a preoperative decision aid to streamline the process |
