Patient and Family Descriptions of Ethical Concerns

Area of Science:

• Bioethics
• Medical Sociology
• Patient Experience Research

Background:

• Ethically challenging situations are common in healthcare.
• Limited research exists on patient and family perspectives regarding these ethical concerns.

Purpose of the Study:

• To survey patients and family members about their experiences with ethically challenging situations.
• To identify key themes and areas for improvement from the patient and family viewpoint.

Main Methods:

• Content analysis of open-ended survey responses from 196 patients and family members across three hospitals.
• Analysis of 219 unique ethical experiences reported by participants.

Main Results:

• Participants reported 219 ethical experiences spanning bioethics themes: patient-physician relationship, end-of-life care, decision-making capacity, healthcare costs, and genetic testing.
• A strong focus was placed on relational issues and patient-physician encounters during illness and medical care.
• Many reported ethical concerns originated outside the traditional healthcare setting.

Conclusions:

• Patient and family experiences reveal critical areas for enhancing healthcare delivery and patient support.
• Some ethical concerns may require interventions beyond the conventional healthcare system.
• Addressing relational aspects and patient-provider communication is crucial for improving ethical care.