Preference and actual place-of-death in advanced cancer: prospective longitudinal study

Abstract

ObjectivesTo evaluate the preferred place-of-death (PPoD) among patients with advanced cancer over time, and the concordance between preferred and actual place-of-death.MethodsProspective cohort study. A total of 190 patients with advanced cancer and their caregivers (n=190) were interviewed every 3 months, from study enrolment to 12 months (M0, M1, M2, M3, M4). PPoD data were obtained under four different end-of-life scenarios: (1) severe clinical deterioration without further specification; (2) clinical deterioration suffering from severe symptoms; (3) clinical deterioration receiving home-based visits; and (4) clinical deterioration receiving home-based visits and suffering from severe symptoms.ResultsHome was the most common PPoD over time among patients in scenarios 1 (n=121, 63.7%; n=77, 68.8%; n=39, 57.4%; n=30, 62.5%; n=23, 60.5%) and 3 (n=147, 77.4%; n=87, 77.7%; n=48, 70.6%; n=36, 75.0%; n=30, 78.9%). PPoD in palliative care unit (PCU) and hospital were most frequent at baseline in scenario 2 (n=79, 41.6%; n=78, 41.1%), followed by hospital over time (n=61, 54.5%; n=45, 66.2%; n=35, 72.9%; n=28, 73.7%). During the curse of illness, 6.3% of patients change their PPoD in at least one of end-of-life scenario. About 49.7%, 30.6% and 19.7% of patients died in PCU, hospital and home, respectively. Living in rural area (OR=4.21), poor health self-perception (OR=4.49) and pain at the last days of life (OR=2.77) were associated with death in PPoD. The overall agreement between last preference and actual place-of-death was 51.0% (k=0.252).ConclusionHome death was not the preferred place for a large number of patients when this option was presented within a clinical context scenario. The PPoD and actual place-of-death were depending on the clinical situation.

Outpatient Palliative Care Program: Impact on Home Death Rate in Brazil

“…Further studies at a systematic review delving into the preferences of patients and caregivers regarding the place of death consistently revealed a strong inclination towards home as the preferred location for care and EoL [33]. This sentiment was corroborated by a recent prospective longitudinal study conducted in Brazil [24], emphasizing home as the preferred place of death. However, the study also shed light on various challenges associated with achieving death at the preferred location, particularly within the unique political and socioeconomic context of Brazil.…”

“…Conducted in 32 different centers spanning four regions in Brazil, the findings revealed a two-fold increase in the likelihood of experiencing death at home when patients are under the care of an OPC team. The choice of "place of death" as a focal point aligns with its extensive use in various studies as a quality measure in EoL care [14][15][16][17][18][19][20][21]23,24]. Information on the place of death is useful for informing the development of public policies and ensuring adequate end-of-life care for patients and bereaved survivors [25].…”

Exploring factors and trends in place of death by cancer: a population-based study in Brazil

“…The identified rate of 17.7% of deaths occurring in residential settings within the current study is in line with previously reported findings. 7 , 29 It is important to note that the distribution of home deaths varies significantly across countries, influenced by factors such as disparities in resources, varying stages of palliative care development, and nation-specific regulations concerning end-of-life care. 30 Reflecting the national reality of insufficiently integrated end-of-life care programs, the high frequency of home deaths reported in underdeveloped countries is concerning.…”

“…Vulnerable housing structures of patients, limited access to specialised palliative care health teams, and diminished physical and emotional capabilities of families to provide necessary end-of-life care, all seem to contribute to heightening the concern in this situation. 7 , 8 , 9 …”

“…Additionally, the domicile was not the preferred location for the majority of patients to die, particularly those with poorly managed symptoms. 7 …”