Giving support and getting help: Informal caregivers' experiences with palliative care services

2004 ◽  
Vol 2 (3) ◽  
pp. 265-272 ◽  
Author(s):  
ROY CAIN ◽  
MICHAEL MACLEAN ◽  
SCOTT SELLICK
Keyword(s):  
Palliative Care ◽  
Service Providers ◽  
Care Service ◽  
Informal Caregivers ◽  
Palliative Care Service ◽  
Later Life ◽  
Care Services ◽  
Thunder Bay ◽  
Palliative Care Services ◽  
The Common

Objective: Palliative care services have made significant contributions to those needing end-of-life care, but the effect of these services on informal caregivers is less clear. This article reviews the literature and examines the influences of palliative care services on caregivers of people who are dying of cancer, HIV-related illnesses, and illnesses of later life.Methods: Based on questions that we developed from the literature review, we conducted six focus groups in Toronto, Thunder Bay, and Ottawa, Canada, with informal caregivers about their experiences with caregiving and with palliative care services.Results: We outline the major themes relating to the 42 focus group participants' experiences of giving support and getting help.Significance of results: Our findings help us better understand the common concerns of caregivers of terminally ill seniors, people with HIV/AIDS, and people with cancer. The article discusses the implications of participants' experiences for palliative care service providers.

scholarly journals Bereavement support standards and bereavement care pathway for quality palliative care

2017 ◽  
Vol 16 (4) ◽  
pp. 375-387 ◽  
Author(s):  
Peter Hudson ◽  
Chris Hall ◽  
Alison Boughey ◽  
Audrey Roulston
Keyword(s):  
Palliative Care ◽  
Service Providers ◽  
Care Pathway ◽  
Care Service ◽  
Palliative Care Service ◽  
Bereavement Support ◽  
Care Services ◽  
Palliative Care Services ◽  
Bereavement Care ◽  
The Impact

ABSTRACTObjective:Provision of bereavement support is an essential component of palliative care service delivery. While bereavement support is integral to palliative care, it is typically insufficiently resourced, under-researched, and not systematically applied. Our aim was to develop bereavement standards to assist palliative care services to provide targeted support to family caregivers.Method:We employed a multiple-methods design for our study, which included: (1) a literature review, (2) a survey of palliative care service providers in Australia, (3) interviews with national (Australian) and international experts, (4) key stakeholder workshops, and (5) a modified Delphi-type survey.Results:A total of 10 standards were developed along with a pragmatic care pathway to assist palliative care services with implementation of the standards.Significance of results:The bereavement standards and care pathway constitute a key initiative in the evolution of bereavement support provided by palliative care services. Future endeavors should refine and examine the impact of these standards. Additional research is required to enhance systematic approaches to quality bereavement care.

Sustainability of Palliative Care in a Rural Hospital in Tanzania: A Longitudinal and Prospective 4-Year Study

2020 ◽  
Vol 35 (3) ◽  
pp. 192-198
Author(s):  
Reino Torsti Ilmari Pöyhiä ◽  
Emmanuel Owden Mwalumuli ◽  
Aida Charles Mtega ◽  
Jackson John Vegula
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Hospital Staff ◽  
Oral Solution ◽  
Rural Hospital ◽  
Care Services ◽  
Advanced Planning ◽  
Palliative Care Services ◽  
Sub Saharan

Background: Palliative care has been developed in recent years in many sub-Saharan countries in Africa due to activities of African Association for Palliative Care. Palliative care units have been established also in most hospitals in Tanzania. Yet very little is known about their functions. Long-term studies about the sustainability of palliative care have not been carried out. Methods: The attitudes of 101 members of hospital staff and persons in charge of palliative care services of Ilembula District Designated Hospital (IDDH), Tanzania, were assessed using a modified and prevalidated questionnaire annually in 2014 to 2017. The inquiries were executed on randomly allocated days. Also, the patient and economy registries were analyzed. Additional qualitative data were obtained in personal interviews and during observational visits twice a year at the IDDH. Results: Ilembula District Designated Hospital has a true multiprofessional palliative care team, which provides services in the hospital, in the villages, and at homes. The activities are based on careful 5-year planning and budgeting. Up to 17 villages have been included in the services. Ninety-five percent of the patients were HIV infected. Short-acting morphine oral solution was the only available strong opioid. The hospital staff evaluated palliative care as good or excellent; 50% of the staff would need more support in the end-of-life care. Conclusions: A sustainable palliative care service can be built in a Tanzanian rural hospital if an advanced planning and budgeting are made. In Tanzania, the biggest group of palliative care patients are still HIV-infected individuals. There is a lack of opioids in the country.

scholarly journals Family carer support in home and hospital: a cross-sectional survey of specialised palliative care

2019 ◽  
Vol 10 (4) ◽  
pp. e33-e33
Author(s):  
Maarten Vermorgen ◽  
Aline De Vleminck ◽  
Kathleen Leemans ◽  
Lieve Van den Block ◽  
Chantal Van Audenhove ◽  
...  
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Palliative Care Unit ◽  
Information Support ◽  
Family Carers ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Care Services ◽  
Palliative Care Services

ObjectivesTo evaluate: (1) to what extent family carers of people supported by specialised palliative care services felt they had been provided with information, support and aftercare and (2) how this varied by type of palliative care service, length of enrolment and characteristics of deceased.MethodsA cross-sectional postal survey was conducted using a structured questionnaire with nine items on information, support and aftercare provided by specialised palliative care services to family carers. Flemish family carers of people who had made use of specialised palliative care services at home or in hospital were contacted.ResultsOf all primary family carers (response rate of 53.5% resulting in n=1504), 77.7% indicated they were asked frequently by professionals how they were feeling. Around 75% indicated they had been informed about specific end-of-life topics and around 90% felt sufficiently supported before and immediately after the death. Family carers of people who had died in a palliative care unit, compared with other types of specialised palliative care services, indicated having received more information, support and aftercare.ConclusionsFamily carers evaluate the professional assistance provided more positively when death occurred in a palliative care unit. Policy changes might be needed to reach the same level of care across all specialised palliative care services.

scholarly journals Involvement of palliative care in euthanasia practice in a context of legalized euthanasia: A population-based mortality follow-back study

2017 ◽  
Vol 32 (1) ◽  
pp. 114-122 ◽  
Author(s):  
Sigrid Dierickx ◽  
Luc Deliens ◽  
Joachim Cohen ◽  
Kenneth Chambaere
Keyword(s):  
Palliative Care ◽  
Odds Ratio ◽  
Care Service ◽  
Palliative Care Service ◽  
Population Based ◽  
Decision Making Process ◽  
Care Needs ◽  
International Debate ◽  
Care Services ◽  
Palliative Care Services

Background: In the international debate about assisted dying, it is commonly stated that euthanasia is incompatible with palliative care. In Belgium, where euthanasia was legalized in 2002, the Federation for Palliative Care Flanders has endorsed the viewpoint that euthanasia can be embedded in palliative care. Aim: To examine the involvement of palliative care services in euthanasia practice in a context of legalized euthanasia. Design: Population-based mortality follow-back survey. Setting/participants: Physicians attending a random sample of 6871 deaths in Flanders, Belgium, in 2013. Results: People requesting euthanasia were more likely to have received palliative care (70.9%) than other people dying non-suddenly (45.2%) (odds ratio = 2.1 (95% confidence interval, 1.5–2.9)). The most frequently indicated reasons for non-referral to a palliative care service in those requesting euthanasia were that existing care already sufficiently addressed the patient’s palliative and supportive care needs (56.5%) and that the patient did not want to be referred (26.1%). The likelihood of a request being granted did not differ between cases with or without palliative care involvement. Palliative care professionals were involved in the decision-making process and/or performance of euthanasia in 59.8% of all euthanasia deaths; this involvement was higher in hospitals (76.0%) than at home (47.0%) or in nursing homes (49.5%). Conclusion: In Flanders, in a context of legalized euthanasia, euthanasia and palliative care do not seem to be contradictory practices. A substantial proportion of people who make a euthanasia request are seen by palliative care services, and for a majority of these, the request is granted.

scholarly journals The need for early referral to palliative care especially for Black, Asian and minority ethnic groups in a COVID-19 pandemic: Findings from a service evaluation

2020 ◽  
Vol 34 (9) ◽  
pp. 1241-1248 ◽  
Author(s):  
Claude Chidiac ◽  
David Feuer ◽  
Mary Flatley ◽  
Anna Rodgerson ◽  
Kate Grayson ◽  
...  
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Palliative Care Service ◽  
District General Hospital ◽  
Service Evaluation ◽  
Early Referral ◽  
Care Services ◽  
Minority Ethnic Groups ◽  
Palliative Care Services ◽  
Minority Ethnic

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.

scholarly journals An Australian Neuro-Palliative perspective on Huntington's disease: a case report

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Rajvi Shah ◽  
Sarah CM Lee ◽  
Rupert B Strasser ◽  
Christopher Grossman
Keyword(s):  
Palliative Care ◽  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Late Stage ◽  
Care Service ◽  
Palliative Care Service ◽  
Care Services ◽  
Stage Disease ◽  
Palliative Care Services ◽  
History Of

Abstract Background Huntington’s Disease (HD) is an incurable, progressive neuro-degenerative disease. For patients with HD access to palliative care services is limited, with dedicated Neuro-Palliative Care Services rare in Australia. We discuss the experiences of and benefits to a patient with late-stage HD admitted to our Neuro-Palliative Care service. Case presentation We present the case of a patient with a 16-year history of HD from time of initial genetic testing to admission to our Neuro-Palliative Care service with late-stage disease. Conclusions Given the prolonged, fluctuating and heterogenous HD trajectory, measures need to be implemented to improve earlier access to multi-specialty integrative palliative care services. Given the good outcomes of our case, we strongly advocate for the role of specialised Neuro-Palliative Care services to bridge the gap between clinical need and accessibility.

scholarly journals Opioid errors in inpatient palliative care services: a retrospective review

2018 ◽  
Vol 8 (2) ◽  
pp. 175-179 ◽  
Author(s):  
Nicole Heneka ◽  
Tim Shaw ◽  
Debra Rowett ◽  
Samuel Lapkin ◽  
Jane L Phillips
Keyword(s):  
Palliative Care ◽  
Retrospective Review ◽  
Care Service ◽  
Palliative Care Service ◽  
Direct Result ◽  
Care Services ◽  
Opioid Administration ◽  
Palliative Care Services ◽  
The Impact ◽  
Palliative Patients

Opioids are a high-risk medicine frequently used to manage palliative patients’ cancer-related pain and other symptoms. Despite the high volume of opioid use in inpatient palliative care services, and the potential for patient harm, few studies have focused on opioid errors in this population.ObjectivesTo (i) identify the number of opioid errors reported by inpatient palliative care services, (ii) identify reported opioid error characteristics and (iii) determine the impact of opioid errors on palliative patient outcomes.MethodsA 24-month retrospective review of opioid errors reported in three inpatient palliative care services in one Australian state.ResultsOf the 55 opioid errors identified, 84% reached the patient. Most errors involved morphine (35%) or hydromorphone (29%). Opioid administration errors accounted for 76% of reported opioid errors, largely due to omitted dose (33%) or wrong dose (24%) errors. Patients were more likely to receive a lower dose of opioid than ordered as a direct result of an opioid error (57%), with errors adversely impacting pain and/or symptom management in 42% of patients. Half (53%) of the affected patients required additional treatment and/or care as a direct consequence of the opioid error.ConclusionThis retrospective review has provided valuable insights into the patterns and impact of opioid errors in inpatient palliative care services. Iatrogenic harm related to opioid underdosing errors contributed to palliative patients’ unrelieved pain. Better understanding the factors that contribute to opioid errors and the role of safety culture in the palliative care service context warrants further investigation.

Economic and clinical outcomes of the nurse practitioner-led Sydney Adventist Hospital Community Palliative Care Service

2020 ◽  
Vol 44 (5) ◽  
pp. 791
Author(s):  
Sam G. Moreton ◽  
Emily Saurman ◽  
Glenn Salkeld ◽  
Julie Edwards ◽  
Dawn Hooper ◽  
...  
Keyword(s):  
Palliative Care ◽  
Nurse Practitioner ◽  
Hospital Admissions ◽  
Care Service ◽  
Palliative Care Service ◽  
Hospitalisation Cost ◽  
Community Based ◽  
Care Services ◽  
Palliative Care Services ◽  
At Home

ObjectiveThe aim of this study was to assess the clinical, economic and personal impacts of the nurse practitioner-led Sydney Adventist Hospital Community Palliative Care Service (SanCPCS) MethodsParallel economic analysis of usual care was conducted prospectively with patients from the enhanced SanCPCS. A convenient retrospective sample from the initial service was used to determine the impact of the enhanced service on patient care. A time series survey was used with patients and carers from within the expanded service group in order to measure patient outcomes and values as they approached death. ResultsPatients of the SanCPCS were less likely to die in hospital and had fewer hospital admissions. In addition, the service halved the estimated hospitalisation cost per patient, but the length of hospital stay was not affected by the service. The SanCPCS was more beneficial for women in terms of fewer hospital admissions and lower costs. Patients’ choices regarding place of care and death and what was ‘important’ to them changed over time. For instance, patients tended to prefer being at home as they approached death, and being pain free doubled in importance. ConclusionsNurse practitioner-led community palliative care services have the potential to result in significant economic and personal benefits for patients and their families in need of such care. What is known about the topic?National trends show an emphasis on community services with the aim of promoting and supporting the choice of dying at home, and this coincides with drives to reduce hospital costs and length of stay. Community-based palliative care services may offer substantial economic and clinical benefits. What does this paper add?The SanCPCS was the first nurse practitioner-led community-based palliative care service in Australia. The expansion of this service led to significantly fewer admissions and deaths in hospital, and halved the estimated hospitalisation cost per patient. What are implications for practitioners?Nurse practitioner-led models for care in the out-patient or community setting are a logical direction for palliative services through the engagement of specialised providers uniquely trained to support, nurture, guide and educate patients and their carers.

scholarly journals Integration of Palliative Care Into Comprehensive Cancer Treatment at Moi Teaching and Referral Hospital in Western Kenya

2015 ◽  
Vol 1 (1) ◽  
pp. 23-29 ◽  
Author(s):  
Kenneth Cornetta ◽  
Susan Kipsang ◽  
Gregory Gramelspacher ◽  
Eunyoung Choi ◽  
Colleen Brown ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Cancer Treatment ◽  
Cancer Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Referral Hospital ◽  
Western Kenya ◽  
Care Services ◽  
Palliative Care Services

Purpose The prognosis for the majority of patients with cancer in Kenya is poor, with most patients presenting with advanced disease. In addition, many patients are unable to afford the optimal therapies required. Therefore, palliative care is an essential part of comprehensive cancer care. This study reviews the implementation of a palliative care service based at the Moi Teaching and Referral Hospital in Eldoret, Kenya, and describes the current scope and challenges of providing palliative care services in an East African tertiary public referral hospital. Methods This is a review of the palliative care clinical services at the only tertiary public referral hospital in western Kenya from January 2012 through September 2014. Palliative care team members documented each patient's encounter on standardized palliative care assessment forms; data were then entered into the Academic Model Providing Access to Health Care (AMPATH)-Oncology database. Interviews were also conducted to identify current challenges and opportunities for program improvement. Results This study documents the implementation of a palliative care service line in Eldoret, Kenya. Barriers to providing optimal palliative cancer care include distance to pharmacies that stock opioids, limited selection of opioid preparations, education of health care workers in palliative care, access to palliative chemoradiation, and limited availability of outpatient and inpatient hospice services. Conclusion Palliative care services in Eldoret, Kenya, have become a key component of its comprehensive cancer treatment program.

Effect of patient education on palliative care knowledge and acceptability of outpatient palliative care service among gynecologic oncology patients.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 11583-11583 ◽  
Author(s):  
Ashley Graul ◽  
Ashley Ford Haggerty ◽  
Carolyn Stickley ◽  
Pallavi Kumar ◽  
Knashawn Morales ◽  
...  
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Gynecologic Oncology ◽  
Tertiary Care ◽  
Palliative Care Service ◽  
Cancer Center ◽  
Educational Video ◽  
Oncology Patients ◽  
Care Services ◽  
Palliative Care Services

11583 Background: This was a randomized control trial to estimate the effect of an interventional video on improving palliative care knowledge and acceptability of outpatient services in gynecologic oncology patients. Methods: Women receiving active treatment for gynecologic malignancy (persistent or progressive disease despite primary treatment) were recruited at an academic tertiary care center from 2/2018 to 1/2019 and randomized to: palliative care educational video or non-directive cancer center informational video (control). The primary outcome was desire for referral to palliative care. Function and knowledge were assessed using the Functional Assessment of Cancer Therapy (FACT-G) and the Palliative Care Knowledge Scales. Data analyses were performed using t-tests, Wilcoxon rank sum or Fisher’s exact tests with significance level of α=0.05. Results: 111 women were enrolled. Demographic characteristics were equally distributed between groups (mean age 63.4 vs 65.4 years; 78% vs 82% Caucasian, 58% vs 68% stage III, 71% vs 64% ovarian cancer, 65% vs 72% platinum-sensitive). There was no statistical difference in knowledge scores or in desire for referral to palliative care (29% vs 27%; p=0.79). Secondary analysis showed a statistically significant increase in utilization of palliative care services compared to historic institutional data (8.8% to 29.7%; p=<0.001). Further, those that desired referral had significantly worse FACT-G scores at time of referral choice (table). Conclusions: Use of a palliative care educational video did not increase knowledge or acceptability of palliative care services within this RCT. However, the rate of patients seeking palliative care referral tripled compared to historic rates. Further studies should investigate whether discussion regarding palliative care services alone may increase desire for referral, and if use of Fact-G scores may identify patients in greatest need of services. [Table: see text]

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