The decision for hospice care in patients with terminal illness in Shanghai: A mixed-method study

To investigate why patients with terminal illness and their families in Shanghai choose the hospice ward and their decision-making process.

This was a mixed-method study consisting of a cross-sectional survey and a descriptive qualitative study. Medical decision-makers for patients hospitalized in hospice wards were recruited between September 2019 and July 2021. A medical decision-maker is a family member who makes medical decisions for a patient. All 146 participants completed a self-developed 10-item questionnaire that included five items about their demographic characteristics and five items about the decision-making process. The semi-structured interviews were conducted with nine participants to understand the family's decision-making process when they chose a hospice ward. The interviews were analyzed using qualitative content analysis.

The mean age of the 146 participants was 57.6 years old. Of the decision-makers, 56.85% were the patients' children. Family-dominated discussions involving other family members were the main decision-making mode (84.93%). Patient participation in the decision-making process was reported in 43.15% of families. The participation of doctors (17.81%) and nurses (2.05%) were reported in a small number of families. The most common reason for choosing the hospice ward was the inability to find any other hospital for the patients (82.19%). The most common ways to learn about the service were neighbors and friends (38.36%) and social media (28.77%). Two themes and six categories emerged from the interviews. The first theme was reasons for choosing hospice wards. The reasons included being unable to care for the patients at home, staying in a hospice ward could reduce the psychological stress for home care, being unable to be admitted into tertiary/secondary hospitals, and thinking a hospice ward was a suitable place for the family. The second theme was the decision process of choosing a hospice ward. This theme included the following two categories, i.e., ways to learn about the hospice ward and family-discussion decision mode.

To most families having dying patients, a hospice ward is a reasonable and balanced choice after the families experience huge care stress and practical difficulties. The participation of patients should be encouraged in the family discussion so that their wishes can be known. More efforts will be needed to guide the families with dying patients to make reasonable medical choices. Social media can be a good way to improve public awareness of hospice services in the future. Meanwhile, healthcare providers should be more involved in the decision-making process.