scholarly journals Healthcare professionals’ perspectives of patient and family preferences of patient place of death: a qualitative study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Manjusha K. Sathiananthan ◽  
Gregory B. Crawford ◽  
Jaklin Eliott

Abstract Background Home death is one of the key performance indicators of the quality of palliative care service delivery. Such a measure has direct implications on everyone involved at the end of life of a dying patient, including a patient’s carers and healthcare professionals. There are no studies that focus on the views of the team of integrated inpatient and community palliative care service staff on the issue of preference of place of death of their patients. This study addresses that gap. Methods Thirty-eight participants from five disciplines in two South Australian (SA) public hospitals working within a multidisciplinary inpatient and community integrated specialist palliative care service, participated in audio-recorded focus groups and one-on-one interviews. Data were transcribed and thematically analysed. Results Two major and five minor themes were identified. The first theme focused on the role of healthcare professionals in decisions regarding place of death, and consisted of two minor themes, that healthcare professionals act to: a) mediate conversations between patient and carer; and b) adjust expectations and facilitate informed choice. The second theme, healthcare professionals’ perspectives on the preference of place of death, comprised three minor themes, identifying: a) the characteristics of the preferred place of death; b) home as a romanticised place of death; and c) the implications of idealising home death. Conclusion Healthcare professionals support and actively influence the decision-making of patients and family regarding preference of place of death whilst acting to protect the relationship between the patient and their family/carer. Further, according to healthcare professionals, home is neither always the most preferred nor the ideal place for death. Therefore, branding home death as the ideal and hospital death as a failure sets up families/carers to feel guilty if a home death is not achieved and undermines the need for and appropriateness of death in institutionalised settings.

2019 ◽  
Vol 35 (3) ◽  
pp. 167-173
Author(s):  
Joshua Wales ◽  
Sumeet Kalia ◽  
Rahim Moineddin ◽  
Amna Husain

Background: Socioeconomic disparities in home death have been noted in the literature. Home-based palliative care increases access to home death and has been suggested as a means to decrease these disparities. Aim: Our study examines the association between socioeconomic status and other demographic factors on place of death in a population receiving home palliative care in Toronto, Canada. Design: This is a retrospective chart review of patients who died between August 2013 and August 2015 when admitted to a home-based palliative care service. Multivariate multinomial regression examined the relationship between the place of death (home, palliative care unit [PCU], or acute care) with age, gender, primary diagnosis, and income quintile. Bivariate logistic regression was fitted to calculate the odds ratio (OR) and probability of preference for home death. Setting/Participants: Patients receiving home-based palliative care services from the Latner Centre for Palliative Care in Toronto, Canada. Results: A total of 2066 patients were included in multivariate analysis. Patients in the lowest income quintile had increased odds of dying in acute care (OR = 2.41, P < .001) or dying in PCU (OR = 1.64, P = .008) than patients in highest income quintile. Patients in the next lowest income quintiles 2 and 3 were also more likely to die in acute care. The rate of preference for home death was significantly lower in the lowest income quintile (OR = 0.47, P = .0047). Conclusions: Patients in lower income quintiles are less likely to die at home, despite receiving home-based palliative care, although they may also be less likely to prefer home death.


2002 ◽  
Vol 18 (4) ◽  
pp. 282-286 ◽  
Author(s):  
Vincent Maida

It has been repeatedly shown that most people would prefer to die in their own homes. However, many factors affect the feasibility of this choice. This study retrospectively examined the medical and nursing charts of 402 cancer patients who wished to die at home and had been referred to a palliative care service. Of those reviewed, 223 (55%) died at home, while 179 died in hospitals. The presence of more than one caregiver, an increased length of time between diagnosis and referral to a palliative care physician, an increased length of time under that physician's care, older age at referral, home ownership, and race were all significantly associated with home death, as were certain cancer diagnoses. The most compelling of these predictive factors have formed the basis for an evaluation tool, soon to be validated, to help palliative health professionals assess the viability of home-based palliative care culminating in a home death.


2021 ◽  
Author(s):  
Joanna Elverson ◽  
Helen Aspey ◽  
Owen Lever ◽  
Ellie Bond ◽  
Christine Mackerness ◽  
...  

Author(s):  
Julia Fee Voon Ho ◽  
Nur Syafiqah Marzuki ◽  
Nur Syuhadah Monica Meseng ◽  
Viknaswary Kaneisan ◽  
Yin Khek Lum ◽  
...  

Objectives: Achievement of patients’ preferred place of death is recognized as a component of a good death. This study aimed to investigate the symptom burden in advanced cancer patients, achievement of their place of death preferences and factors associated with home death. Methods: In this retrospective review of 287 patient deaths, we examined patients’ symptom prevalence, preferred and actual place of death and achievement of their place of death preferences using descriptive statistics. Associations between patient factors, home death preference and actual home death were further analyzed using multivariate logistic regression. Results: The most prevalent symptoms were weakness, pain and poor appetite, with a mean of 5.77(SD: 2.37) symptoms per patient. The median interval from palliative care referral to death was 21 (IQR: 74) days. Of the 253 patients with documented place of death preference, 132 (52.1%) preferred home death, 111(43.9%) preferred hospital death, 1 (0.4%) preferred to die at a temple and 9(3.6%) expressed no preference. Overall, 221 of 241(91.7%) patients with known actual place of death achieved their preference. Older patients were more likely to prefer home death (OR 1.021; 95% CI 1.004-1.039, p = 0.018) and die at home (OR 1.023; 95% CI 1.005-1.041, p = 0.014). Gender, marital status, cancer diagnosis and symptoms were not associated with preference for or actual home death. Conclusion: Despite a high symptom burden, most patients preferred and achieved a home death. Late palliative care referral and difficult symptom management contributed to failure to fulfill home death preference. Preference for home death should be considered when managing terminally ill geriatric patients.


2019 ◽  
Vol 34 (3) ◽  
pp. 291-299 ◽  
Author(s):  
Stuart Ekberg ◽  
Anthony Herbert ◽  
Kristi Johns ◽  
Gabrielle Tarrant ◽  
Holly Sansone ◽  
...  

Background: Effective communication is a cornerstone of quality paediatric palliative care. Families report struggling, however, to know what to discuss, with whom, and when. Although question prompt lists exist for adult palliative care, they do not suit the unique circumstances of paediatric palliative care. Aim: To develop a prompt list suitable for paediatric palliative care. Design: Underpinned by Delphi methodology, a six-phase procedure was adopted: (1) drafting items based on the findings of a literature review, (2) condensing the list of items based on group discussion, (3) refining items based on a survey of expert healthcare professionals, (4) additional refining of items based on another survey of professionals, (5) further refining of items based on cognitive interviews with family members, and (6) final review by healthcare professional and family member groups. Participants: Three participant groups were involved during various phases: (1) members of an Australasian paediatric palliative care national reference group, (2) healthcare professionals associated with a local paediatric palliative care service, and (3) family members who were users of the same local service. Results: Through multi-phase consultation across participant groups, the draft question prompt list was refined progressively to 28 items, split across two booklets to allow end-of-life items to be provided separately, and reconceptualised as a discussion prompt list rather than a question prompt list. Conclusion: By involving representatives of major stakeholder groups, this study has facilitated the design of a prompt list suited to the circumstances of paediatric palliative care. Future research should trial the effectiveness of this resource.


2020 ◽  
pp. bmjspcare-2019-002019 ◽  
Author(s):  
Marieberta Vidal ◽  
Alfredo Rodriguez-Nunez ◽  
David Hui ◽  
Julio Allo ◽  
Janet L Williams ◽  
...  

ObjectiveMeeting the preferences of patients is considered an important palliative care outcome. Prior studies reported that more than 80% of patients with terminally ill cancer prefer to die at home. The purpose of this study was to determine place-of-death preference among palliative care patients in the outpatient centre and the palliative care unit (PCU) of a comprehensive cancer centre.MethodsA cross-sectional anonymous questionnaire was administered to patients with advanced cancer and caregivers (PCU and outpatient centre) between August 2012 and September 2014. PCU patients responded when there was no delirium and the primary caregiver responded when the patient was unable to respond. In the case of outpatients, dyads were assessed. The survey was repeated 1 month later.ResultsOverall, 65% preferred home death. There was less preference for home death among PCU patients (58%) than among outpatients (72%). Patient and caregiver agreement regarding preferred place of death for home was 86%. After 1 month, outpatients were significantly more likely than PCU patients to have the same preferred place of death as they had 1 month earlier (96% vs 83%; p=0.003).ConclusionsAlthough home was the preferred place of death in our group of patients with advanced cancer and their caregivers, a substantial minority preferred hospital death or had no preference. We speculate that PCU patients’ higher preference for hospital death is likely related to more severe distress because they had already tried home care. Personalised assessment of place of death preference for both patient and caregiver is needed.


2015 ◽  
Vol 9 (1) ◽  
pp. 84-91 ◽  
Author(s):  
Maimoona Ali ◽  
Margred Capel ◽  
Gareth Jones ◽  
Terri Gazi

ObjectivesThe majority of people would prefer to die at home and the stated intentions of both statutory and voluntary healthcare providers aim to support this. This service evaluation compared the preferred and actual place of death of patients known to a specialist community palliative care service.DesignAll deaths of patients (n=2176) known to the specialist palliative care service over a 5-year period were examined through service evaluation to compare the actual place of death with the preferred place of death previously identified by the patient. Triggers for admission were established when the patients did not achieve this preference.ResultsBetween 2009 and 2013, 73% of patients who expressed a choice about their preferred place of death and 69.3% who wanted to die at home were able to achieve their preferences. During the course of their illness, 9.5% of patients changed their preference for place of death. 30% of patients either refused to discuss or no preference was elicited for place of death.ConclusionsDirect enquiry and identification of preferences for end-of-life care is associated with patients achieving their preference for place of death. Patients whose preferred place of death was unknown were more likely to be admitted to hospital for end-of-life care.


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