Researchers at Flinders University have investigated how specialist palliative care nurses make decisions for dying patients who are unresponsive, discovering that they utilize a combination of clinical expertise, ethical judgment, close observation, and engagement with families to inform care in the final stages of life.
“Patients die in many different health care settings, but building relationships with a patient and their family greatly informs and influences nurses’ decision-making,” says research lead author Tricia O’Connor, a doctoral student at Flinders University. The study interviewed nurses from a metropolitan palliative care service, highlighting the importance of knowing a patient’s cues and wishes, with the resulting decisions made by nurses being linked to family engagement and the care needs of an unresponsive dying patient.
The “Absent Presence” of Patients
The study introduces the concept of the patient as an “absent presence,” where their values, wishes, and identity continue to shape care despite their inability to communicate. Nurses approach these cases with focused intentionality, recognizing the dying process and their responsibility to detect subtle signs of distress and advocate for patients who can no longer advocate for themselves.
The average time from a patient becoming unresponsive to death is about two days. During this period, patients may be unable to express pain, discomfort, fears, or care preferences, making them particularly vulnerable.
Communication as a Cornerstone
Communication is both the foundation of relationships with families and the process through which decision-making is mediated. The study found that nurses did not explicitly recognize or articulate the ethical and moral dimensions of these decisions, indicating that such considerations were often enacted implicitly rather than consciously framed as ethical decision-making.
Nurses assess a dying person’s comfort, dignity, and the requirements of person- and family-centered care.
Strengthening Nurse Support and Training
Researchers emphasize the need for structured mentorship, opportunities for reflective dialogue, and communication skills development. They also call for support to make the ethical dimensions of decision-making more explicit in practice, along with the development of clinical guidelines and frameworks for caring for unresponsive dying patients.
The study addresses a significant gap in end-of-life care research and highlights the unique role nurses play in safeguarding comfort, dignity, and person-centered care at the end of life. “By making these dying people visible and clarifying the decision-making required in their care, this study provides a foundation for more attentive, informed, ethically responsive and person-centered nursing care at the end of life,” says study co-author Catherine Paterson, professor of cancer nursing at Flinders’ Lifewell Cancer Research Centre. “The findings highlight the need to recognize this unresponsive phase of dying—and this recognition should prompt health care leaders, educators and policymakers to strengthen training and support for nurses caring for dying patients across all settings.”