Place-of-death preferences among patients with cancer and family caregivers in inpatient and outpatient palliative care

2020 ◽  
pp. bmjspcare-2019-002019 ◽  
Author(s):  
Marieberta Vidal ◽  
Alfredo Rodriguez-Nunez ◽  
David Hui ◽  
Julio Allo ◽  
Janet L Williams ◽  
...  
Keyword(s):  
Palliative Care ◽  
Advanced Cancer ◽  
Place Of Death ◽  
Hospital Death ◽  
Home Death ◽  
Cross Sectional ◽  
Patients With Cancer ◽  
Anonymous Questionnaire ◽  
Care Outcome ◽  
Comprehensive Cancer Centre

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.

Symptom Prevalence and Place of Death Preference in Advanced Cancer Patients: Factors Associated With the Achievement of Home Death

2021 ◽  
pp. 104990912110487
Author(s):  
Julia Fee Voon Ho ◽  
Nur Syafiqah Marzuki ◽  
Nur Syuhadah Monica Meseng ◽  
Viknaswary Kaneisan ◽  
Yin Khek Lum ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Symptom Burden ◽  
Place Of Death ◽  
Hospital Death ◽  
Advanced Cancer Patients ◽  
Home Death ◽  
Factors Associated ◽  
Symptom Prevalence

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.

Exploring the preferences for place of death among cancer patients and their family caregivers.

2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 40-40 ◽  
Author(s):  
Marieberta Vidal
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Place Of Death ◽  
Hospital Death ◽  
Advanced Cancer Patients ◽  
Home Death ◽  
Significant Difference ◽  
The Uk ◽  
At Home

40 Background: Understanding the preferred place of death (POD) for advanced cancer patients (Pts) is very important when they are approaching the end of life. Meeting the preferences of Pts is considered an important palliative care (PC) outcome. Prior studies reported that more than 80% of Pts with terminally ill cancer prefer to die at home. In many countries such as the UK, Italy, Greece, South Korea and Japan home deaths have been falling, but in some states of the US and Canada there are indications of a reversal of trends. Dying at home may be more difficult for Pts in severe physical and psychosocial distress, or when there are social or financial difficulties. The purpose of this study was to determine POD preference among PC Pts in the outpatient center (OC) and the palliative care unit (PCU). Methods: A sectional anonymous questionnaire was administered to advanced cancer Pts and caregivers (PCU patients and OC) between August 2012 and September 2014. PCU Pts responded when there was no delirium and the primary caregiver responded when the patient was unable to respond. In the case of outpatients dyads (patient and caregiver) were assessed. Results: Overall 141/216 (65%) preferred home death. PCU patients preferred home death less than outpatients. Patient and caregiver agreement regarding preferred place of death was 86% (p <0.001). The preferred POD was the same as one month ago for 82/99 (83%) PCU Pts and 111/116 (96%) outpatients, with significant difference between groups (p=0.002). Conclusions: Although home is the preferred POD in advanced cancer Pts, a substantial minority prefer hospital death or no difference. Patients admitted to the PCU have a higher preference for hospital death in comparison to the outpatients, likely reflecting more severe distress because they already tried home care. Pts and caregivers agree on POD in most cases. Personalized assessment of POD preference for both patient and caregiver is needed. [Table: see text]

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
Keyword(s):  
Palliative Care ◽  
Healthcare Professionals ◽  
Care Service ◽  
Palliative Care Service ◽  
Public Hospitals ◽  
Place Of Death ◽  
Hospital Death ◽  
Home Death ◽  
Service Staff ◽  
The Ideal

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.

scholarly journals Calidad de la muerte percibida por los cuidadores de pacientes en cuidados paliativos

2020 ◽  
Vol 19 (4) ◽  
pp. 463-482
Author(s):  
Daniel Gutiérrez Sánchez ◽  
Inmaculada López-Leiva ◽  
Antonio I. Cuesta-Vargas
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Advanced Cancer ◽  
Spanish Version ◽  
Advanced Cancer Patients ◽  
Cross Sectional ◽  
Quality Of Dying ◽  
State Examination ◽  
Care Outcome

Objetivo: Determinar la calidad de la muerte y del proceso del morir en población oncológica avanzada, y analizar su asociación con el sufrimiento y la calidad de la atención al final de la vida.Método: Estudio descriptivo, correlacional, de corte transversal en el que participaron los cuidadores principales de los pacientes oncológicos fallecidos en cuidados paliativos. Para la evaluación de la calidad de la muerte y del proceso del morir se utilizó la versión española del Quality of Dying and Death Questionnaire. El sufrimiento fue evaluado con el Mini-Suffering State Examination y la calidad de la atención al final de la vida con la Palliative care Outcome Scale. Resultados: 74 cuidadores familiares de pacientes paliativos fallecidos participaron en este estudio. La puntuación media de la versión española del Quality of Dying and Death Questionnaire fue de 65,58 (± 20,98). Se encontró una correlación negativa entre la calidad de la muerte y el sufrimiento (r=-0,63) y positiva entre la calidad de la muerte y la calidad de la atención al final de la vida (r=0,62).Conclusión: La calidad de la muerte de los enfermos oncológicos avanzados en cuidados paliativos se relaciona positivamente con la calidad de la atención al final de la vida y negativamente con el sufrimiento. La atención paliativa contribuye a alcanzar niveles satisfactorios en la calidad de la muerte y del proceso del morir de los pacientes oncológicos avanzados. Objective: To determine the quality of dying and death in an advanced oncology population, and to analyze the association with the suffering and the quality of attention at the end of life.Methods: A cross-sectional, descriptive, correlational design was used. For the evaluation of the quality of dying and death, the Spanish version of the Quality of Dying and Death Questionnaire was used. Suffering was assessed with the Mini-Suffering State Examination and the quality of end-of-life care was evaluated with the Palliative care Outcome Scale.Results: 74 relatives of deceased patients were included in this study. The mean total score of the Spanish version of the Quality of Dying and Death Questionnaire was 64.58 (± 20.98). A negative correlation between the quality of dying and death and the suffering was found (r = -0.63), and a positive correlation between the quality of dying and death and the quality of the attention at the end of life was found (r = 0.62).Conclusion: Quality of dying and death in advanced cancer population is positively related to the quality of of the attention at the end of life and negatively related to suffering. Palliative care can contribute to achieving a satisfactory quality of dying and death of advanced cancer patients.

Where Patients With Cancer Die: A Population-Based Study, 1990 to 2012

2018 ◽  
Vol 34 (4) ◽  
pp. 224-231 ◽  
Author(s):  
Roger W. Hunt ◽  
Katina D’Onise ◽  
Anh-Minh Thi Nguyen ◽  
Kamalesh Venugopal
Keyword(s):  
Palliative Care ◽  
Nursing Homes ◽  
Care Delivery ◽  
Young Patients ◽  
Population Based ◽  
Place Of Death ◽  
Patients With Cancer ◽  
Metropolitan Hospital ◽  
Care Models ◽  
At Home

Aims:To describe changes in the place of death of patients with cancer from 1990 to 2012, and to identify issues for their end-of-life care.Materials and Methods:Population-based descriptive study, with analyses of place of death patterns, using the South Australian Cancer Registry records of 86 257 patients with cancer who died from 1990 to 2012.Results:From 1990 to 2012, the proportion of cancer deaths in hospital decreased from 63.4% to 50.9%, and in nursing homes increased from 8.2% to 22.5%. After the year 2000, the proportions in hospices and at home were both below 15%. Multivariate analyses showed that young patients with cancer were more likely to die in a hospice or at home, compared to elderly patients with cancer who were more likely to die in a nursing home; the likelihood of dying in a hospice increased with socioeconomic status; patients with a short survival time or a hematological malignancy were more likely to die in a metropolitan hospital.Conclusions:Compared to most other countries, the proportion of cancer deaths at home was low, and many patients would not have died at their preferred place. The trend for more cancer deaths to occur in nursing homes is likely to continue, but nursing homes generally lack the resources and skilled staff to provide quality palliative care. Models of palliative care delivery should take account of patient preferences, the growth of terminal cancer care in nursing homes, and apparent inequities.

scholarly journals A scoping review of palliative care outcome measures in interstitial lung disease

2021 ◽  
Vol 30 (161) ◽  
pp. 210080
Author(s):  
Rebecca A. Gersten ◽  
Amanda C. Moale ◽  
Bhavna Seth ◽  
Judith B. Vick ◽  
Hannah Brown ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Palliative Care ◽  
Physical Health ◽  
Outcome Measures ◽  
Secondary Analysis ◽  
Social Health ◽  
Cross Sectional ◽  
Care Outcome

Interstitial lung disease (ILD) confers a high mortality and symptom burden, substantially impacting quality of life. Studies evaluating palliative care in ILD are rapidly expanding. Uniform outcome measures are crucial to assessing the impact of palliative care in ILD. This scoping review evaluates existing outcome measures in general health-related quality of life (HRQoL), physical health, mental health, social health and advance care planning (ACP) domains in patients with ILD. Articles in English with quantitative assessment of at least one measure of general HRQoL, physical health, mental health, social health or ACP in patients with ILD were included. Searches across three databases yielded 3488 non-duplicate articles. 23 met eligibility criteria and included three randomised controlled trials (RCTs) or secondary analysis of an RCT (13%), three cross-sectional studies or secondary analysis of cross-sectional study (13%), one prospective study (4%) and 16 retrospective studies (70%). Among eligible articles, 25 distinct instruments were identified. Six studies assessed general HRQoL (26%), 16 assessed physical health (70%), 11 assessed mental health (48%), six assessed social health (26%) and 16 assessed ACP (70%). The ability to compare results across studies remains challenging given the heterogeneity in outcome measures. Future work is needed to develop core palliative care outcome measures in ILD.

Preferred Place of Death for Patients With Incurable Cancer and Their Family Caregivers in Egypt

2018 ◽  
Vol 36 (5) ◽  
pp. 423-428
Author(s):  
Samy A. Alsirafy ◽  
Ahmad M. Hammad ◽  
Noha Y. Ibrahim ◽  
Dina E. Farag ◽  
Omar Zaki
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Full Employment ◽  
Performance Status ◽  
Eastern Cooperative Oncology Group ◽  
Place Of Death ◽  
Hospital Death ◽  
Incurable Cancer ◽  
Mediterranean Countries ◽  
Egyptian Patients

Background: Little is known about the place of death of patients with cancer in Eastern Mediterranean countries including Egypt, where palliative care is underdeveloped. Identifying the preferred place of death (PPoD) is important for the development of appropriate palliative care models in these countries. Objectives: To know the PPoD of Egyptian patients with incurable cancer and their family caregivers (FCGs) and to determine the factors that may impact their preferences. Methods: An observational cross-sectional study that included 301 dyads of patients with incurable cancer and one of their FCGs. A questionnaire was designed to collect data about the characteristics of patients and FCGs as well as their preferences. Results: The majority of dyads (272/301, 90.4%) answered the PPoD question. Home was the PPoD in 93% of patients and 90.1% of FCGs ( P = .218). The congruence between patients’ and FCGs’ PPoD was 92.7% (κ = 0.526). In multivariate analysis, poorer performance status (Eastern Cooperative Oncology Group 3 or 4) and full employment of FCGs associated significantly with patients’ preference to die in hospital (odds ratio [OR] = 3.015 [95% confidence interval [CI]: 1.004-9.054], P = .049 and OR = 4.402 [95% CI: 1.561-12.417], P = .005, respectively), while poorer performance status and nonreferral to the palliative medicine unit were associated with FCGs’ preference of hospital death (OR = 2.705 [95% CI: 1.105-6.626], P = .029 and OR = 2.537 [95% CI: 1.082-5.948], P = .032, respectively). Conclusions: The results of the current study suggest that home is the PPoD for the vast majority of Egyptian patients with incurable cancer and their FCGs. Palliative care interventions that promote home death of patients with incurable cancer are needed in Egypt.

scholarly journals Patterns of Opioid Prescription, Use, and Costs Among Patients With Advanced Cancer and Inpatient Palliative Care Between 2008 and 2014

2019 ◽  
Vol 15 (1) ◽  
pp. e74-e83 ◽  
Author(s):  
Sriram Yennurajalingam ◽  
Zhanni Lu ◽  
Suresh K. Reddy ◽  
EdenMae C. Rodriguez ◽  
Kristy Nguyen ◽  
...  
Keyword(s):  
Palliative Care ◽  
Advanced Cancer ◽  
Symptom Assessment ◽  
Patient Characteristics ◽  
Opioid Prescription ◽  
Patients With Cancer ◽  
Edmonton Symptom Assessment Scale ◽  
Symptom Assessment Scale ◽  
Symptom Changes

PURPOSE: An understanding of opioid prescription and cost patterns is important to optimize pain management for patients with advanced cancer. This study aimed to determine opioid prescription and cost patterns and to identify opioid prescription predictors in patients with advanced cancer who received inpatient palliative care (IPC). MATERIALS AND METHODS: We reviewed data from 807 consecutive patients with cancer who received IPC in each October from 2008 through 2014. Patient characteristics; opioid types; morphine equivalent daily dose (MEDD) in milligrams per day of scheduled opioids before, during, and after hospitalization; and in-admission opioid cost per patient were assessed. We determined symptom changes between baseline and follow-up palliative care visits and the in-admission opioid prescription predictors. RESULTS: A total of 714 (88%) of the 807 patients were evaluable. The median MEDD per patient decreased from 150 mg/d in 2008 to 83 mg/d in 2014 ( P < .001). The median opioid cost per patient decreased and then increased from $22.97 to $40.35 over the 7 years ( P = .03). The median MEDDs increased from IPC to discharge by 67% ( P < .001). The median Edmonton Symptom Assessment Scale pain improvement at follow-up was 1 ( P < .001). Younger patients with advanced cancer (odds ratio [OR[, 0.95; P < . 001) were prescribed higher preadmission MEDDs (OR, 1.01; P < .001) more often in the earlier study years (2014 v 2009: OR, 0.18 [ P = .004] v 0.30 [ P = .02]) and tended to use high MEDDs (> 75 mg/d) during hospitalization. CONCLUSION: The MEDD per person decreased from 2008 to 2014. The opioid cost per patient decreased from 2008 to 2011 and then increased from 2012 to 2014. Age, prescription year, and preadmission opioid doses were significantly associated with opioid doses prescribed to patients with advanced cancer who received IPC.

scholarly journals Nursing home staff’s perspective on end-of-life care of German nursing home residents: a cross-sectional survey

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Anke Strautmann ◽  
Katharina Allers ◽  
Alexander Maximilian Fassmer ◽  
Falk Hoffmann
Keyword(s):  
Palliative Care ◽  
Nursing Home ◽  
Nursing Homes ◽  
End Of Life ◽  
Nursing Staff ◽  
End Of Life Care ◽  
Nursing Home Residents ◽  
Hospital Death ◽  
Life Care ◽  
Cross Sectional

Abstract Background Nursing homes are becoming more important for end-of-life care. Within the industrialised world, Germany is among the countries with the most end-of-life hospitalizations in nursing home residents. To improve end-of-life care, investigation in the status quo is required. The objective was to gain a better understanding of the perspectives of nursing home staff on the current situation of end-of-life care in Germany. Methods A cross-sectional study was conducted as a postal survey among a random sample of 1069 German nursing homes in 2019. The survey was primarily addressed to nursing staff management. Data was analyzed using descriptive statistics. Staff was asked to rate different items regarding common practices and potential deficits of end-of-life care on a 5-point-Likert-scale. Estimations of the proportions of in-hospital deaths, residents with advance directives (AD), cases in which documented ADs were ignored, and most important measures for improvement of end-of-life care were requested. Results 486 (45.5%) questionnaires were returned, mostly by nursing staff managers (64.7%) and nursing home directors (29.9%). 64.4% of the respondents rated end-of-life care rather good, the remainder rated it as rather bad. The prevalence of in-hospital death was estimated by the respondents at 31.5% (SD: 19.9). Approximately a third suggested that residents receive hospital treatments too frequently. Respondents estimated that 45.9% (SD: 21.6) of the residents held ADs and that 28.4% (SD: 26.8) of available ADs are not being considered. Increased staffing, better qualification, closer involvement of general practitioners and better availability of palliative care concepts were the most important measures for improvement. Conclusions Together with higher staffing, better availability and integration of palliative care concepts may well improve end-of-life care. Prerequisite for stronger ties between nursing home and palliative care is high-quality education of those involved in end-of-life care.

scholarly journals Psychological burden in family caregivers of patients with advanced cancer at initiation of specialist inpatient palliative care

2019 ◽  
Vol 18 (1) ◽  
Author(s):  
Karin Oechsle ◽  
Anneke Ullrich ◽  
Gabriella Marx ◽  
Gesine Benze ◽  
Julia Heine ◽  
...  
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Associated Factors ◽  
Sleep Disturbances ◽  
Anxiety Symptoms ◽  
Psychological Burden ◽  
Severe Anxiety ◽  
Care Outcome ◽  
Item Scale

Abstract Background This study prospectively evaluated distress, depressive and anxiety symptoms as well as associated factors in family caregivers (FC) of advanced cancer patients at initiation of specialist inpatient palliative care. Methods Within 72 h after the patient’s first admission, FCs were asked to complete German versions of the Distress Thermometer, Generalized Anxiety Disorder 7-item scale (GAD-7), Patient Health Questionnaire depression module 9-item scale (PHQ-9) for outcome measure. Multivariate logistic regression analyses were used to identify associated factors. Results In 232 FCs (62% spouses/partners), mean level of distress was 7.9 (SD 1.8; range, 2–10) with 95% presenting clinically relevant distress levels. Most frequent problems were sadness (91%), sorrows (90%), anxiety (78%), exhaustion (77%) and sleep disturbances (73%). Prevalence rates of moderate to severe anxiety and depressive symptoms were 47 and 39%, respectively. Only 25% of FCs had used at least one source of support previously. In multivariate regression analysis, being female (OR 2.525), spouse/partner (OR 2.714), exhaustion (OR 10.267), and worse palliative care outcome ratings (OR 1.084) increased the likelihood for moderate to severe anxiety symptom levels. Being female (OR 3.302), low socio-economic status (OR 6.772), prior patient care other than home-based care (OR 0.399), exhaustion (OR 3.068), sleep disturbances (OR 4.183), and worse palliative care outcome ratings (OR 1.100) were associated with moderate to severe depressive symptom levels. Conclusions FCs of patients presenting with indication for specialist palliative care suffer from high distress and relevant depressive and anxiety symptoms, indicating the high need of psychological support not only for patients, but also their FCs. Several socio-demographic and care-related risk-factors influence mental burden of FCs and should be in professional caregivers’ focus in daily clinical practice.

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