Can I Die at Home? A Service Evaluation Comparing the Preferred and Actual Place of Death Known to a Specialist Community Palliative Care Service

Author(s):  
Maimoona Ali
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.


2021 ◽  
pp. 026921632110229
Author(s):  
Sabrina Bajwah ◽  
Polly Edmonds ◽  
Emel Yorganci ◽  
Rosemary Chester ◽  
Kirsty Russell ◽  
...  

Background: People from ethnic minority groups and deprived socioeconomic backgrounds have worse outcomes from COVID-19. Aim: To examine associations between ethnicity and deprivation with timing of palliative care referral for inpatients with COVID-19. Design: Service evaluation of consecutive patients with COVID-19 referred to palliative care. Sociodemographic (including age, sex, Index of Multiple Deprivation, ethnicity coded as White/non-White) and clinical variables were described. The primary outcome was timing of referral to palliative care. Associations between ethnicity and socioeconomic deprivation with the primary outcome were explored using multivariable regression. Setting/participants: Patients with COVID-19 referred to a hospital palliative care service across two London hospitals February–May 2020. Results: A total of 334 patients were included. 119 (36%) were from a non-White ethnic group; most commonly Black British (77, 23%) and Asian British (26, 8%). A longer time between admission and palliative care referral was associated with male gender (IRR 1.23, 95% CI 1.14–1.34) and lower levels of socioeconomic deprivation (IRR 1.61, 95% CI 1.36–1.90) but not ethnicity (IRR = 0.96, 95% CI 0.87–1.06). Conclusions: This large service evaluation showed no evidence that patients from ethnic minority or more deprived socioeconomic groups had longer time to palliative care referral. Ongoing data monitoring is essential for equitable service delivery.


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.


2020 ◽  
pp. bmjspcare-2019-002005
Author(s):  
Philippa Stilwell ◽  
Ankit Bhatt ◽  
Keval Mehta ◽  
Ben Carter ◽  
Maggie Bisset ◽  
...  

ObjectivesIdentifying the preferred place of death for children/young people with cancer and determining whether this is achieved is pertinent to inform palliative care service provision. The aims of this retrospective case series review were to determine where children/young people with cancer want to die and whether their preferred place of death was achieved.MethodsClinical/demographic details, including preferred and actual places of death, were recorded for 121 patients who died between 2012 and 2016 at a tertiary haematology–oncology centre. A logistic regression model was used to determine the odds of achieving the preferred place of death in patient subgroups.Results74 (61%) patients had a documented discussion regarding place of death preference. Where a preferred location was identified, 72% achieved it. All patients who wanted to die in the hospital (n=17) or a hospice (n=9) did, but only 58% of patients who wanted to die at home (n=40) achieved this. Of the 42% (n=17) who wanted to die at home but did not, 59% of these were due to rapid deterioration in clinical status shortly after the discussion. Having supportive treatment in the last month of life was associated with increased odds of achieving the preferred place of death versus those who were undergoing chemotherapy/radiotherapy (OR 3.19, 95% CI 1.04 to 9.80, p value=0.04).ConclusionWhere hospice/hospital was chosen as the preferred place of death, this was always achieved. Achieving home as the preferred place of death was more challenging and frequently prevented by rapid clinical deterioration. Clinicians should be encouraged to address end-of-life preferences at an early stage, with information provided adequately. Further research should explore implications of these findings on both end-of-life experience and overall service provision.


2019 ◽  
pp. bmjspcare-2018-001679
Author(s):  
Alessandra Buja ◽  
Michele Rivera ◽  
Vincenzo Baldo ◽  
Marta Soattin ◽  
Ylenia Rizzolo ◽  
...  

ObjectivesThe aim of this study was to investigate how palliative care service structures and processes correlate with their outputs and outcomes, measuring the latter respectively in terms of intensity of care and death at home.MethodsThe Veneto Regional Health Authorities collected a set of 37 quality indicators for the year 2016, covering the following five dimensions: service integration, service structure, accessibility, professional processes and organisational processes. Their validity was assessed by a panel of 29 palliative care experts. A score was assigned to each indicator on the basis of its relevance. Non-parametric correlations between the care quality indicators and the measures of the palliative care outputs and outcomes were investigated, along with the presence of a monotonic trend in the performance of the local health units (LHU) grouped by ‘low’, ‘medium’ or ‘high’ scores and differences between these groups of LHUs.ResultsThe data showed that palliative care service structure and professional processes were the dimensions correlating significantly with the intensity of care coefficient. An increasingly significant statistical trend was found in both the intensity of care coefficient and the proportion of deaths at home for the three groups of LHUs in terms of the professional processes dimension.ConclusionsDespite its limitations, this study brought to light some statistically significant findings that are worth investigating in larger samples. To achieve improvements in the quality of palliative care, it is important for healthcare providers to know which variables most affect the output and especially the outcomes of the services offered.


2020 ◽  
Vol 34 (9) ◽  
pp. 1241-1248 ◽  
Author(s):  
Claude Chidiac ◽  
David Feuer ◽  
Mary Flatley ◽  
Anna Rodgerson ◽  
Kate Grayson ◽  
...  

Background: Palliative care services face challenges in adapting and responding to the COVID-19 pandemic. Understanding how palliative care needs and outcomes have changed during the pandemic compared to before the pandemic is crucial to inform service planning and research initiatives. Aim: To evaluate the impact of COVID-19 on symptoms, clinical characteristics, and outcomes for patients referred to a hospital-based palliative care service in a district general hospital in London, UK. Design: A retrospective service evaluation. Data were extracted from the electronic patient records. Setting/participants: The first 60 inpatients with confirmed COVID-19 infection, referred to the hospital palliative care service between 1 March 2020 and 23 April 2020, and another 60 inpatients, referred to the hospital palliative care service between 11 March 2019 and 23 April 2019, were included from a district general hospital in East London, UK. Results: Patients with COVID-19 have lower comorbidity scores, poorer performance status, and a shorter time from referral to death compared to patients without COVID-19. Breathlessness, drowsiness, agitation, and fever are the most prevalent symptoms during COVID-19 compared to pain and drowsiness pre-COVID-19. Time from admission to referral to palliative care is longer for Black, Asian and minority ethnic patients, especially during COVID-19. Conclusion: Early referral to palliative care is essential in COVID-19, especially for Black, Asian and minority ethnic groups. There is urgent need to research why Black, Asian and minority ethnic patients are referred late; how palliative care services have changed; and possible solutions to setting up responsive, flexible, and integrated services.


2016 ◽  
Vol 15 (2) ◽  
pp. 205-213 ◽  
Author(s):  
Stefanie Küttner ◽  
Johannes Wüller ◽  
Tania Pastrana

AbstractObjective:The aims of the present study were (1) to describe the prevalence of psychosocial distress in palliative care patients living at home and the related factors, and (2) to test implementation of the Distress Thermometer (DT) within a home-based palliative care service.Method:Ours was a 15-month prospective study beginning in September of 2013 in western Germany with consecutive patients cared for by a home care palliative care service. The research was implemented during the first visit by the home care team. Patients were excluded if they were under 18 years of age, mentally or physically unable to complete the assessment questionnaires as judged by their healthcare worker, or unable to understand the German language. During the first encounter, the Distress Thermometer (DT), a Problem List (PL), and a structured questionnaire for evaluation were applied and sociodemographic and medical data collected.Results:A total of 103 patients (response rate = 70%; mean age = 67; female = 54%; married = 67%; oncological condition = 91%; Karnofsky Performance Status [KPS] score 0–40 = 34%, 50–70 = 60%, >80 = 6%) were included. The incidence of distress (DT score ≥4) was 89.3% (mean = 6.3 ± 2.5). No statistical association was found between level of distress and sociodemographic or medical factors. The five most reported problems were “fatigue” (90%), “getting around” (84%), “eating” (63%), “bathing/dressing” (60%), and “sleep” (57%). The number of problems reported correlated with level of distress (ρ = 0.34). The DT was comprehensible, and 80% considered its completion as unremarkable, while 14% found it “relieving.”Significance of results:A significant proportion of patients treated at home reported symptoms of distress. The most oft-mentioned problems were physical and emotional in nature. The findings of our study highlight the importance of creating new concepts and structures in order to address the psychosocial needs of patients in home care with palliative needs.


2007 ◽  
Vol 5 (4) ◽  
pp. 389-395 ◽  
Author(s):  
Tomomi Sano ◽  
Etsuko Maeyama ◽  
Masako Kawa ◽  
Yuki Shirai ◽  
Mitsunori Miyashita ◽  
...  

ABSTRACTObjectives:The aim of the study was to clarify the care experience of primary caregivers when caring for a terminal cancer patient in the home with the assistance of a home palliative care service. Participants were asked to provide background data and to evaluate their experience of caregiving and of the patient's response throughout the period of home palliative care, up to the time of death.Methods:One hundred twelve primary family caregivers were a mailed self-report questionnaire, and 74 valid questionnaires were returned (response rate 66%).Results:Ninety percent felt that the patient's condition of mind and body was reasonably stable, and 75% felt that the death was peaceful. About 90% reported a deepening of their bond with the patient and that the bond of other family members deepened also. Sixty percent reported that the burden of caregiving was not too great or not felt at all. Approximately 90% judged that the patient retained his or her own personal qualities to the end. Ninety percent also felt that they had done their best in their caregiving and judged that home care had been beneficial for the deceased, for the primary caregiver him/herself, and for other family members. These primary caregivers' evaluations of caring for a terminally ill patient at home in conjunction with a home palliative care service were both high and positive.Significance of results:Our findings suggest that it is important to maintain the patient's personal qualities up to the time of death through appropriate symptom management, to respect the family bond of the household, and to provide professional support in order to reduce the load on the family. If appropriate care is provided, peaceful home death will be possible, resulting in significant benefits for patients and their families in Japan.


2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 112s-112s
Author(s):  
I. Nuchprayoon

Background: Thailand is a resource-limited country with universal health care. Cancer services are available for everyone for free, but the system has been overloaded due to limited number of qualified specialist physicians, nurses, radiology technicians, and growing demand from ageing population. Patients with advanced cancer are often not referred to a palliative care (PC) service until multiple treatment failure. Aim: To provide a better access to PC, we initiated an independent palliative care counseling and home service, focusing on families of patients with advanced cancer. Methods: The families of patients with advanced cancer were referred to our home palliative care service through cancer patient support groups, self-referral or from other physicians. Eligibility for PC was guided through a Thai national guideline of cancer treatment as well as by NCCN guideline. Early stage cancer were excluded from the service and referred to oncology service of patient's choice. For each family, we arranged a family meeting/counseling session at patient's home or a designated place and introduce palliative care as well as cancer therapy options. If the patient choose palliative care, then we provide home PC. Patients are followed at home by home visits, and continually communicated online and by phone. Family members visits palliative clinic for morphine and other medications. Results: In the first 3 years of operation, 53 adult patients with advanced or recurrent cancer and their families were counseled. Fifty chose home palliative care service, exclusively (30) or along with a hospital oncology service (20), while 3 patients preferred life-prolonging cancer therapy. The average age (±SD) of patients were 60 (±16) years. The most common cancers were stage IV or metastatic breast (7), lung (6), colorectal (6), and leukemia/lymphoma (6). The median survival time of this PC cohort was 3.1 months, with 16 (32%) living > 6 months, and 10 (20%) > 1 year. Of 36 patients who had died, 22 (61%) died at home, 13 (36%) at a local hospital, and 1 (3%) at a cancer center. Conclusion: For advanced cancer patients, palliative care can be introduced early and efficiently by PC team and most people would prefer PC. PC counseling may serve as an entry point to cancer care system. For patients who choose early palliative care, it can reduce burden on the existing busy oncology service, while providing satisfaction on patients and family.


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