Beyond death and dying: how Chinese spouses navigate the final days with their loved ones suffering from terminal cancer

While advances in biomedicine exist for cancer, its diagnosis and treatment still bring the threat of mortality to the forefront of spouses’ lives. Family conflict is largely due to unmet expectations that generate a lot of physical and emotional distress for spouses, as the primary surrogates. Moreover, older individuals in Hong Kong tend to lack control of where they die and who is present at the end of their lives. Deeper understanding of Chinese spouses’ perspectives is needed to generate new insights, particularly in how spouses cope with caregiving. The aim of the study was to explore the Chinese spousal experience with their dying loved ones suffering from terminal cancer. A qualitative study using interpretive description was conducted. Spousal caregivers were purposively recruited through a hospice unit of two regional hospitals in Hong Kong, China. Documentary sources were used as secondary data. Fifteen individuals, consisting of seven men and eight women, participated in individual interviews. The overarching theme was a socially constructed “we” experience of confronting mortality, characterized by five subthemes: (a) balancing end-of-life tension between cure and comfort, (b) prioritizing the family goals and concerns, (c) de-medicalizing caregiving, (d) working for mutuality, and (e) creating a legacy of love. The study suggests that clinicians might consider harnessing the capacity of spouses to help work through confronting experiences of mortality and transforming events for goals that go beyond death. This places a major emphasis on salutary strategies surrounding transitions from curative to palliative care.