Research addresses critical gap in nonverbal palliative nursing decisions

Flinders University research published in the Journal of Advanced Nursing has examined how specialist palliative care nurses navigate these complex decisions, and found they draw on clinical expertise, ethical judgement, close observation and family engagement to guide care during a patient’s final days.

“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 PhD student at Flinders University.

Strengthening nurses’ decision-making may support more timely recognition of care needs, improve assessment and management of distress or discomfort, promote person-centered care, and enhance communication with families when patients are in their final days of life.

The study, which interviewed specialist palliative care nurses from a metropolitan palliative care service, highlighted 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.

Nurses’ decision-making when caring for an unresponsive dying patient is complex. Decision-making is affected by communication, uncertainty, plus ethical and moral agency. Recognizing the vulnerability of unresponsive dying patients is essential to supporting person-centered care.”

Tricia O’Connor, PhD Student, Flinders University

The average time of a patient becoming unresponsive to death is about two days, during which they may be unable to communicate pain, discomfort, fears, or care preferences, making them particularly vulnerable.

A key finding was the concept of the patient as an “absent presence”, where a person’s values, wishes and identity continue to shape care, despite their inability to speak for themselves.

Nurses described approaching care of these patients 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 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,” says study co-author Professor 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 healthcare leaders, educators and policymakers to strengthen training and support for nurses caring for dying patients across all settings.”

Highlighting the complexity of caring for an unresponsive dying patient, the study shows communication as both the foundation of relationships with the wider family and the process through which decision-making is mediated.

Importantly, this 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.

Decision-making also involved assessing a dying person’s comfort, dignity and the requirements of person- and family-centered care.

The researchers say that enhanced palliative care educational preparation and strengthened clinical learning environments are needed for more nurses to feel confident of making appropriate decisions when caring for unresponsive dying patients.

“This should be supported by structured mentorship, opportunities for reflective dialogue, communication skills development, and support for nurses to make the ethical dimensions of decision-making more explicit in practice,” says Ms O’Connor.

“It should also support the development of clinical guidelines and frameworks for caring for unresponsive dying patients.

“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.”