Is the dying person really unconscious?

A blog post written by Tricia O'Connor

Dying is not a new phenomenon, nor is caring for the dying person. As death approaches there is a progressive failure of the major organs and body systems which leads to a physical and mental decline. This progressive whole body system failure, together with the profound fatigue experienced with dying, contributes to a decline in the state of consciousness in people nearing the end of their life. For the dying person, in the last days and hours of life, many are no longer able to communicate or express their own needs or preferences of care, or respond to external stimuli. In the absence of shared communication, it is challenging to ensure care is tailored and responsive to the individual’s care needs. The ‘gold standard’ for assessing symptoms, such as pain, is to ask the patient to describe the frequency, and severity of their symptoms. However, timely identification of distressing symptoms is problematic when patients are no longer able to express or articulate their needs.

To date, there are no assessment tools available in clinical practice specifically designed to assess the holistic care needs of the unresponsive dying person. Healthcare professionals have little understanding about the emotional, physical, spiritual, or social care needs of the imminently dying. Adding to the problem, our recent research work indicates that current pain assessment tools are often completed by nursing staff, meaning the assessment of pain is solely based on the nurse’s subjective view of the dying person’s pain.

Poor symptom control and management is traumatic for patients and a significant source of emotional and physical distress for patients and their families. Cicely Saunders, founder of the modern-day hospice is famously quoted for saying “how people die remains in the memories of those who live on”. Those who have witnessed inadequate symptom palliation in the context of their dying loved ones are often the people who are active advocates for legislative change to allow assisted dying.

The dying person is largely considered to be ‘unconscious’; yet evidence has identified that dying people fluctuate in and out of consciousness and show signs of awareness, including recognition of their loved ones around them when family members say their goodbyes, and when nurses provide care interventions. Anecdotal evidence suggests that apparent unconscious patients may maintain the ability to hear until the last moments of life. This level of awareness could mean that the dying person may be aware of pain or other distressing symptoms such as shortness of breath, or indeed emotional, psychological, spiritual, or existential distress as they near death. The unresponsive dying person is therefore both vulnerable and voiceless.

These issues raise significant uncertainty and challenges for patients, healthcare professionals, and families in the delivery of person-centred care for the dying person. These clinically important issues raise significant questions about the delivery of holistic person-centred care for patients who are unable to communicate their own individual needs due to the dying process. Our systematic review of the literature reminds health professionals to consider the unconscious or unresponsive dying person in a new light – and to be cognisant of symptoms and a fluctuating level of awareness despite the initial conscious state presentation. The review also adds to the urgent call for the robust empirical development of holistic assessment tools to better determine the individualised care needs of the imminently dying.

References

O'Connor T, Paterson C, Gibson J, Strickland K. The conscious state of the dying patient: An integrative review. Palliat Support Care. 2022 Oct;20(5):731-743. doi: 10.1017/S1478951521001541.