Table 2 Summary of the included studies
Authors Year Location | Aim/RQ | Eligible study participants and data collection methods | Data analysis methods | Key findings (second order constructs) |
|---|---|---|---|---|
Vig et al. 2010 US [14] | To identify reasons that eligible patients do not enroll in hospice | Semi-structured interviews 10 non-end-of-life care patients | Content analysis | Patient/Family Perceptions • Patient and/or family “not ready” for hospice • Misconception that hospice care is for the last hours to days of life • Hospice means acknowledging dying • Waiting to hear about any other treatment options from doctor(s) • Spouse wants help from hospice, patient doesn’t • Wives protective of their caregiving role • Family concerns about their ability to care for patient at home • Family not sure what hospice could add to existing care Hospice Specific • Definition of the hospice appropriate patient • Requiring patients/families to choose between hospice or palliative treatment • How hospice is presented during the initial visit • Hospice referral confused with a home health referral • Hospice informational visit confused with a hospice admissions visit Systems Issues • Patient concerns about continuity of care after hospice enrollment • Inadequate hospice benefit from private insurance • Delay in obtaining physician order for hospice |
Carrion 2010 US [15] | The extent to which individuals and families in the Latino community are involved with institutionalized assistance from hospice, and the barriers to referral which can be attributed to organizational structure, language, and culture | Semi-structured interviews 10 non-end-of-life care patients | Open coding and thematic categorization | Structural organizational barriers: health literacy, invasion of privacy, and response time. Factors that impeded Latino families from utilizing of hospice services: place of referral-office, cultural beliefs, and paid caregivers. Language: Need for Spanish-speaking staff (by both hospice and non-hospice users) and educational hospice materials in Spanish. |
Chapple et al. 2011 UK [16] | To explore why some of these patients reported a preference for end of life care and death either at home, hospice, nursing home or hospital, how strongly they felt about this, and how they described making decisions. | Semi-structured interviews 8 people with life-limiting pancreatic cancer | Thematic analysis | Care available at home; experience of hospital care; perceptions and experiences of hospice care; fears of negative associations with place of death (for family) |
Frey et al. 2013 NZ [17] | The aim of the study is to identify challenges to the use of hospice services for Maori, Pacific and Asian patients. | Semi-structured interviews 7 non-end-of-life care patients | Thematic analysis | A matter of culture: awareness of hospice services; access to information; misinformation; cultural understandings. |
Meeker et al. 2014 US [18] | The purpose of this study was to explore patients’ and caregivers’ experiences and perspectives as they responded to advanced illness and, when relevant, transitioned to comfort-focused care. | Semi-structured interviews with mostly dyads, some patient only 12 patients (10 with cancer) that included hospitalized adult patients who met the end-of-life care eligibility criteria but who had not chosen to focus on comfort care or elected end-of-life care or had only done so within the past week. | Constant comparative techniques of grounded theory | Recursive process of contending with advanced illness: Suffering (shared forms of suffering, reciprocal suffering), struggling (enduring, fighting), and either continuing to struggle and suffer or some moved into the settling phase (adjusting, awareness of terminality) |
Waldrop et al. 2015 US [19] | The purpose of this study was to compare decision-making in late-stage cancer in people who enrolled in hospice with those who declined. Concepts from the Carroll and Johnson (1990) decision-making framework guided the development of a hospice decision-making model. | Qualitative and quantatitive - interviews (open ended questions and scaled measures) 24 non-end-of-life carepatients | theory led thematic analysis using the Carroll and Johnson (1990) model and constant comparative analysis. | The adapted Carroll and Johnson (1990) model presents the stages of: Recognition of Advanced Cancer and Information and Communication as ongoing are experienced similarly by both hospice and non-hospice groups. There was recursive relationship between the stages Formulation of Awareness and Generation of Alternatives that informed the Evaluation of Hospice (in the future, I will know when it is time); these stages were different in the hospice and non-hospice groups |
Lin et al. 2019 Taiwan [20] | The aim of this study was therefore to explore the decision-making processes and drivers associated with receiving palliative care in advance care planning discussions from perspectives of people living with advanced cancer, their families and healthcare professionals in northern Taiwan. | Semi-structured interviews 15 patients with advanced cancer in oncology or hospice unit | Thematic analysis | The decisions for not choosing palliative care as part of advance care planning discussions are driven by: patients weighing others’ benefits more important than benefits to themselves; trying to pacify the families; being a role model for children by facing the challenge of active treatment. |
Spencer et al. 2020 US [21] | To further understandings of how hospice decisions unfold over time, consistent with recent calls for studying the complexity involved in end-of-life care. | Semi-structured interviews 20 non-end-of-life care patients | Abductive framework analysis with a phenomenological perspective | Propose the term a “soft no,” in which patients neither accept nor overtly refuse hospice. Those giving “soft” refusals do not explicitly refuse hospice, but their actions function to postpone a hospice decision in an uncertain health context that may become more clear over time. (1) not seeing the value added of hospice (yet), (2) assuming the timing is premature (not dying yet), and (3) relying on extensive health-related support networks that justify or endorse continuation of active care. |
Pini et al. 2021 [22] UK | The aim of this paper was to identify current barriers, facilitators and experiences of raising and discussing palliative care with people with advanced cancer. | Semi-structured interviews, non-referred had own interview schedule 8 non-end-of-life care patients | Framework analysis | Referral process: timing and triggers; responsibility. Engagement: perception of treatment, prognosis and Palliative Care; psychological and emotional preparedness for discussion; understanding how palliative care could benefit present and future. |