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

Abstract

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

Hospice preference among families with cancer patients in China: An exploratory study

“…In this study, 46% of the decision-makers had heard of hospice care but only 14.4% reported that their doctors introduced hospice care before. A previous study reported that social media and friends and relatives were the main information sources of families with dying patients about hospice care in Shanghai; only 17.1% of the families knew about hospice care from their previous doctors [24]. These ndings suggest that Chinese healthcare providers' discussion about the option of hospice care with patients with an advanced illness and their families may not be common.…”

“…A quantitative study reported that the acceptance of hospice care among the community residents in Hebei province was not high and their preference for hospice care was signi cantly in uenced by older age and a higher education background [23]. A previous study explored the reasons for dying patients and their families choosing the hospice ward and found that the availability of being hospitalized was the main reason for their choice [24]. Thus, existing literature about EOL stage decision-making among Chinese patients and their families is limited.…”

Hospice preference of the family decision-makers for cancer patients in China: an exploratory study

“…In this study, 46% of the decision-makers had heard of hospice care but only 14.4% reported that their doctors introduced hospice care before. A previous study reported that social media and friends and relatives were the main information sources of families with dying patients about hospice care in Shanghai; only 17.1% of the families knew about hospice care from their previous doctors [ 25 ]. These findings suggest that Chinese healthcare providers’ discussions about the option of hospice care with patients with advanced illness and their families may not be common.…”

“…An online questionnaire was developed by the researchers for data collection. The questionnaire was developed based on previous literature [ 16 , 25 , 26 ] and discussed within the research team. Some revisions were made after two experienced nurses working in a palliative ward and in an oncology ward, respectively, reviewed the questionnaire.…”

“…A quantitative study reported that the acceptance of hospice care among the community residents in Hebei province was not high and their preference for hospice care was significantly influenced by older age and a higher education background [ 24 ]. A previous study explored the reasons why dying patients and their families chose a hospice ward and found that the availability of being hospitalized was the main reason for their choice [ 25 ].…”