An examination of home-based end-of-life care for cancer patients: a qualitative study

Abstract

BackgroundOnly a small number of patients have utilized the home-based end-of-life care service in Shanghai that has been offered since 2012. This study explores how home-based end-of-life care is delivered in community health service centers in Shanghai and examines the difficulties in the delivery of the care.MethodsThis was a qualitative study in which data were collected from interviews and analyzed using qualitative content analysis. Nineteen health care providers with experience in delivering home-based end-of-life care in 12 community health service centers were recruited. The interviews were conducted between August 2018 and February 2019.ResultsFour themes emerged from the interviews: (i) Patients under home-based end-of-life care: Patients receiving the care were cancer patients with less than 1 year of life expectancy. The criteria for patients were broad. (ii) Service structure: The service was delivered regularly by the physicians and nurses using the approaches of home visits and/or telephone follow-ups. (iii) Service process: The service consisted of multiple components, including monitoring the patient’s condition, managing the patient’s symptoms, giving daily care instructions, performing nursing procedures, and giving psychological support. However, most of the care focused on monitoring the patients and managing their physical discomfort. (iv) Difficulties in delivering care: Being unable to provide the service and feeling powerless when facing psycho-spiritual problems were the two major difficulties. Three factors contributed to the suspension of the service: The gap between the service and the needs of the patients, a lack of patients, and low work motivation. The demand that the truth be concealed from the families and their attitude of avoiding talking about death were the key factors of the failure of psycho-spiritual care.ConclusionsSeveral issues should be addressed before the service can be further developed, including fully understanding the needs and preferences of local patients and their families, securing more financial support and a better supply of drugs, delivering better training for staff, and ensuring greater rewards for individuals and institutions providing the service.

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

“…The findings indicate that being cared for in a hospital at the end-of-life stage may be the preferred choice of Chinese families. Previous studies support the conclusion that Chinese families prefer patients receiving care in a healthcare institution instead than at home [ 10 , 17 ]. Although some families choose hospice wards because they are suitable for the patients, many still choose hospice wards only because they want them to be cared for in a healthcare institution.…”

“…Many studies have discussed the use of hospice services in Shanghai and the challenges of frontline hospice care providers [ 2 , 17 , [19] , [20] , [21] , [22] , [23] ]. Previous local studies have demonstrated that the community-based, city-covered hospice services have not been fully functioning [ 2 , 19 , 21 , 23 ].…”

Identifying Core Domains to Assess the “Quality of Death”: A Scoping Review

“…73 Death education can inform the citizenry on ways to meet personal preferences at EoL while understanding that diverse values on dying and death exist within any society. 72,[74][75][76] Health systems have a role to play in advancing public awareness and education on EoLC through, for example, dissemination of appropriate resources and information.…”

“…34,84,89 Sub-domain 4, environment, pertains to the EoLC built environment. This includes factors related to physical environment (e.g., infrastructure related both in terms of equipment and to create a private, personalized, and comfortable space such as a single room with a window and less visible technology), 49,53,64,[103][104][105][106][107][108][109] organizational environment (e.g., healthcare setting and design characteristics that promote familiarity and openness), 69,76,110 and social environment (e.g., environmental facilitation of social interactions that allow closeness to others such as with regular caregiver visits, stimulating activities that are 'positive distractions', and activities of daily living including the practice of spirituality). 108,109,111,112 These resource elements account for the influence of environment on facilities functioning, including safety.…”

“…Financial assistance through cost-effective and targeted schemes can reduce the financial burden and distress on patients and families due to direct and indirect costs. 43,61,64,68,76,114,120,[130][131][132] Assistance to access financial resources was especially noted by studies focused on indigenous communities. 120,133…”