Department of Palliative & Supportive Care, Burjeel Medical City, Abu Dhabi, UAEUnited Arab Emirates
Also available as PDF (figures and tables appear in the PDF).
This commentary is the second in a series highlighting the challenges we face in providing palliative care. This case highlights the numerous, multifaceted issues that interplay in the complex web of physical and psycho-social dynamics that are always present but take on more significance towards the end of life. The rationale for documenting our experience, undoubtedly a shared experience among palliative care teams, is twofold: (1) as a form of narrative reflective debriefing and (2) to give context to the distress that we see manifested by families as a loved one enters the end-of-life (EoL) period.
Keywords: Palliative care; Familial dynamics; Distress; End-of-life (EoL)
While it is safe to say that we expected some distress from certain members of the family, the intensity of these events was still a surprise to everyone on our team. It did occur to us at the time that the patient’s mother was extremely calm and collected despite the
chaos around her. A few days later, during a discussion, it became apparent what had transpired in the last hours of our patient’s life. Approximately an hour before he died, our patient apparently experienced a moment of terminal lucidity—he woke up, looked at his wife and mother, and said, “I’m very sorry to say this now, but you are right, I do have a second wife,” before suddenly losing consciousness again.
To those of us working in palliative care, this unexpected return of consciousness or mental clarity just prior to death (terminal lucidity) is a well-recognized phenomenon.2 This, however, experiences. We are usually not aware of everything that they have experienced during their journey with serious illness, nor are we always allowed to discuss these experiences with them. The earlier the palliative care team can engage with a patient and their family,
the better the relationship and, therefore, the communication. Engaging at a late stage, just prior to death, is fraught with difficulty – we are ’parachuted into’ a highly emotionally charged environment with few cues to help us navigate that family’s dynamics. Being able to work effectively in this sort of environment requires a specific skill set—one that palliative care teams can offer.
While this narrative cannot be viewed as research, we felt that the case beautifully illustrated how family dynamics impact both a patient’s end-of-life care and the team providing the care. Palliat Med Hosp Care Open J. 2024; 10(1): 1-3. doi: 10.17140/PMHCOJ-10-154
The authors declare that they have no conflicts of interest.