Preferred and actual place of death in haematological malignancies: a report from the UK haematological malignancy research network

Abstract

ObjectivesHospital death is comparatively common in people with haematological cancers, but little is known about patient preferences. This study investigated actual and preferred place of death, concurrence between these and characteristics of preferred place discussions.MethodsSet within a population-based haematological malignancy patient cohort, adults (≥18 years) diagnosed 2004–2012 who died 2011–2012 were included (n=963). Data were obtained via routine linkages (date, place and cause of death) and abstraction of hospital records (diagnosis, demographics, preferred place discussions). Logistic regression investigated associations between patient and clinical factors and place of death, and factors associated with the likelihood of having a preferred place discussion.ResultsOf 892 patients (92.6%) alive 2 weeks after diagnosis, 58.0% subsequently died in hospital (home, 20.0%; care home, 11.9%; hospice, 10.2%). A preferred place discussion was documented for 453 patients (50.8%). Discussions were more likely in women (p=0.003), those referred to specialist palliative care (p<0.001), and where cause of death was haematological cancer (p<0.001); and less likely in those living in deprived areas (p=0.005). Patients with a discussion were significantly (p<0.05) less likely to die in hospital. Last recorded preferences were: home (40.6%), hospice (18.1%), hospital (17.7%) and care home (14.1%); two-thirds died in their final preferred place. Multiple discussions occurred for 58.3% of the 453, with preferences varying by proximity to death and participants in the discussion.ConclusionChallenges remain in ensuring that patients are supported to have meaningful end-of-life discussions, with healthcare services that are able to respond to changing decisions over time.

Where Do Cancer Patients in Receipt of Home-Based Palliative Care Prefer to Die and What Are the Determinants of a Preference for a Home Death?

“…Additionally, perhaps patients find physical and emotional comfort at home [25]. The results are similar to previous studies which also reported that most patients preferred a home death [3,9,12,26].…”

“…Home-based palliative care enables patients who are terminally ill to be cared for at home and aims to improve their quality of life [2]. Many people prefer to be taken care of at home and also prefer a death at home compared to other settings, such as a hospital or hospice [3,4]. A better understanding of the determinants of preference for place of death may assist to actualize those preferences, while achieving a preferred place of death is considered an indicator of high-quality end-of-life care [5,6].…”

“…Patients' preferences for the place of death have been examined in various countries or regions, such as China [8], Egypt [9], Netherlands [10], Denmark [4,11], Japan [7], UK [3,12], Canada [13,14], and Taiwan [15] and these studies indicate that most patients preferred to die at home. Some of these studies have identified the determinants of preferred place of death [7][8][9]11,15].…”

Strategies for introducing palliative care in the management of relapsed or refractory aggressive lymphomas

“…14 In addition, they should be revisited during the disease course because patients' preferences may evolve. 18 Although early engagement in these discussions is essential, this is difficult to operationalize in real time for patients with aggressive lymphomas. Therefore, practical triggers to conduct these conversations are critical (Table 2).…”

“…Patients who engage in goals-of-care discussions with their hematologic oncologists are more likely to receive care that is consistent with their preferences, to receive specialty palliative care, and to enroll in hospice. [16][17][18] They are also less likely to experience intensive EOL health care use (eg, multiple hospital admissions, hospital death), 19 with corresponding improvement in QOL, reduced risk of complicated grief for bereaved caregivers, and lower health care costs. 16 Patients with aggressive lymphomas have substantial palliative care needs, including fatigue, dyspnea, depression, and pain, which typically worsen near the EOL.…”