Unintended, percolated work: Overlooked collaborative opportunities during end-of-life care

Bereavement due to the loss of a close family member is a universal phenomenon, placing a significant psychological burden on the affected parties, triggering negative emotions like regret, self-blame, etc. This is particularly pronounced in informal/family caregivers involved in end-of-life care. Although healthcare professionals can provide emotional and medical support to the patients and help family members be prepared for their loved ones’ imminent death, little attention has been given to how medical professionals and family members can effectively collaborate to make end-of-life care smooth.

To resolve this, Mr. Shun Saito, a graduate student, and Associate Professor Taro Sugihara, from Institute of Science Tokyo, Japan, conducted semi-structured interviews with six bereaved family members and eight healthcare professionals. Their study aimed to understand what the stakeholders needed to realize about the experiences of their care journeys and what factors affected the collaborative activities between the stakeholders involved in end-of-life care. They published their findings on April 25, 2025, in the 2025 CHI Conference on Human Factors in Computing Systems (CHI'25) proceedings held between April 26–May 01, 2025. The interviews were conducted by Mr. Saito between August and December of 2022 with men and women aged between 20–80 years who had experienced bereavement. Five doctors and three nurses with experience in end-of-life care related to death or senility also participated in the study.

Mr. Saito explains the overall findings from their study here, “Bereaved family members broadly recollected the mixed regretful actions and decisions that should have been taken during the end-of-life care process. Coordination and cooperation challenges that existed between healthcare professionals and family caregivers emerged as factors that impeded these actions at the time.”

This result led to the presence of unintended, percolated work (UPW), a key finding of this study. The authors classify UPW into three types. The first classification involves overloaded work experienced during the caregiving and end-of-life stages, which arose from the demands of their daily life, compounded by the added responsibilities of caregiving, placing extreme mental strain and capacity overload on the family caregiver. The second classification involves overlooked work due during the end-of-life and near-death stages, stemming from the situational changes in the caregivers’ activities towards the patients’ near-death. This left the caregivers helpless and abandoned due to a lack of support from medical professionals and other family members.

The third classification is about overstepped work experienced during the near-death stage by medical professionals, where doctors and nurses intervene in the patients’ care, unintentionally disregarding the agency of the family caregivers. This left the medical professionals feeling burn out and with difficulties in trying to replace the family members.

“Our findings redirect the shift in attention from achieving caregivers’ perceived needs to nurturing collaboration by addressing invisible work and unshared emotions. We recommend reframing care and end-of-life care as a continuous process, integrating previously separate research perspectives to inform better support designs,” concludes Mr. Saito about their work.

Overall, UPW—activities where stakeholders unintentionally exceeded their expected duties—shed light on collaborative opportunities between medical professionals and family caregivers, suggesting improved designs for medical professionals and technological support to make end-of-life care easier.

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About Institute of Science Tokyo (Science Tokyo)
Institute of Science Tokyo (Science Tokyo) was established on October 1, 2024, following the merger between Tokyo Medical and Dental University (TMDU) and Tokyo Institute of Technology (Tokyo Tech), with the mission of “Advancing science and human wellbeing to create value for and with society.”

About Associate Professor Taro Sugihara from Institute of Science Tokyo (Science Tokyo), Japan
Dr. Taro Sugihara is an Associate Professor at the School of Environment and Society, Science Tokyo, Japan. His major research domains include humanities and social sciences, rehabilitation science, human interfaces and interactions, and informatics. He has published over 50 articles and has more than 250 citations. Also, he collaborated with other researchers and published a book based on the assistive technologies aiding in dementia care. Additionally, he has been awarded the prestigious 13^th Academic Encouragement Award and is one of the esteemed recipients of the 9^th Research Group Award, Human Interface Society of Japan.

Funding information
This research was supported by a Japan Society for the Promotion of Science (award numbers: 20H04470 and 22K04581).