Caring for people at the end of life: How do cancer caregivers differ from other caregivers?

2012 ◽  
Vol 30 (15_suppl) ◽  
pp. 9128-9128
Author(s):  
Afaf Girgis ◽  
Amy Pickar Abernethy ◽  
David C Currow
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Care Service ◽  
Palliative Care Service ◽  
Participation Rate ◽  
Cross Sectional ◽  
Australian Health ◽  
Care Giving ◽  
Multi Stage ◽  
Cancer Caregivers

9128 Background: The size of the population in receipt of cancer care is growing as the population ages and grows, with many receiving outpatient care, living for longer and wishing to be cared for at home. Hence, cancer is now one of the most common health conditions in receipt of informal care giving. Methods: The South Australian Health Omnibus is an annual, face-to-face, cross-sectional, whole-of-population, multi-stage, systematic area sampling survey which seeks a minimum of 3,000 respondents each year state-wide. From 2000-2007, questions about end of life were asked. This study compares people who cared for someone with cancer until death (cancer caregivers) with caregivers of people with other life limiting illnesses (non-cancer caregivers). Results: 4,665/14,624 (31.9%; participation rate 71.6%) had someone close to them die from an “expected” death in the 5 years prior to being surveyed. One in 10 (10%; 1,504/14,624) provided hands-on (day-to-day or intermittent) care; the majority (79.5%) having cared for someone with cancer. Compared to non-cancer caregivers, cancer caregivers cared for someone who was significantly younger (mean age 66 vs 74 years; p<0.0001), and to have had a palliative care service involved in the care of that person (64.9% vs 39%; p=0.000). Whilst not statistically significant, cancer caregivers were somewhat less likely to be the spouse of the person they cared for (11.8% vs 16.8%); more likely to be of non-English speaking background (11% vs 7.5%); more likely to report that the deceased was comfortable in the last 2 weeks of life (44.1% vs 31.7%); and prepared to care again for someone with a life-limiting illness (81.3% vs 71.4%). Conclusions: Caring for someone with cancer at the end of life appears to be fundamentally different to other caregiver populations, particularly in relation to age of, and relationship to, the patient, which may contribute to their substantially greater utilisation of palliative care services. Being a younger caregiver increases the likelihood of them caring again in the future.

scholarly journals 77 National Audit of Care At the End of Life (NACEL)—Round Two Findings

2021 ◽  
Vol 50 (Supplement_1) ◽  
pp. i12-i42
Author(s):  
D Hibbert
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Care Service ◽  
Palliative Care Service ◽  
Care Plan ◽  
Specialist Palliative Care ◽  
Experience Of Care ◽  
Outcomes Of Care ◽  
Specialist Palliative Care Service ◽  
The Right

Abstract   NACEL is a national comparative audit of the quality and outcomes of care experienced by the dying person and those important to them during the final admission in acute and community hospitals in England and Wales. Mental health inpatient providers participated in the first round but excluded from the second round. NACEL round two, undertaken during 2019/20, comprised: Data was collected between June and October 2019. 175 trusts in England and 8 Welsh organisations took part in at least one element of NACEL (97% of eligible organisations). Key findings include Recognising the possibility of imminent death: The possibility that the patient may die was documented in 88% of cases. The median time from recognition of dying to death was 41 hours (36 hours in the first round). Individual plan of care: 71% of patients, where it had been recognised that the patient was dying (Category 1 deaths), had an individualised end of life care plan. Of the patients who did not have an individualised plan of care, in 45% of these cases, the time from recognition of dying to death was more than 24 hours. Families’ and others’ experience of care: 80% of Quality Survey respondents rated the quality of care delivered to the patient as outstanding/excellent/good and 75% rated the care provided to families/others as outstanding/excellent/good. However, one-fifth of responses reported that the families’/others’ needs were not asked about. Individual plan of care: 80% of Quality Survey respondents believed that hospital was the “right” place to die; however, 20% reported there was a lack of peace and privacy. Workforce Most hospitals (99%) have access to a specialist palliative care service. 36% of hospitals have a face-to-face specialist palliative care service (doctor and/or nurse) available 8 hours a day, 7 days a week. NACEL round three will start in 2021.

Easing of Suffering in Children With Cancer at the End of Life: Is Care Changing?

2008 ◽  
Vol 26 (10) ◽  
pp. 1717-1723 ◽  
Author(s):  
Joanne Wolfe ◽  
Jim F. Hammel ◽  
Kelly E. Edwards ◽  
Janet Duncan ◽  
Michael Comeau ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Care Service ◽  
Geometric Mean ◽  
Symptom Control ◽  
Palliative Care Service ◽  
Do Not Resuscitate ◽  
Children With Cancer ◽  
Adjusted Risk

Purpose In the past decade studies have documented substantial suffering among children dying of cancer, prompting national attention on the quality of end-of-life care and the development of a palliative care service in our institutions. We sought to determine whether national and local efforts have led to changes in patterns of care, advanced care planning, and symptom control among children with cancer at the end of life. Methods Retrospective cohort study from a US tertiary level pediatric institution. Parent survey and chart review data from 119 children who died between 1997 and 2004 (follow-up cohort) were compared with 102 children who died between 1990 and 1997 (baseline cohort). Results In the follow-up cohort, hospice discussions occurred more often (76% v 54%; adjusted risk difference [RD], 22%; P < .001) and earlier (adjusted geometric mean 52 days v 28 days before death; P = .002) compared with the baseline cohort. Do-not-resuscitate orders were also documented earlier (18 v 12 days; P = .031). Deaths in the intensive care unit or other hospitals decreased significantly (RD, 16%; P = .024). Parents reported less child suffering from pain (RD, 19%; P = .018) and dyspnea (RD, 21%; P = .020). A larger proportion of parents felt more prepared during the child's last month of life (RD, 29%; P < .001) and at the time of death (RD, 24%; P = .002). Conclusion Children dying of cancer are currently receiving care that is more consistent with optimal palliative care and according to parents, are experiencing less suffering. With ongoing growth of the field of hospice and palliative medicine, further advancements are likely.

scholarly journals End-of-life care for homeless people: A qualitative analysis exploring the challenges to access and provision of palliative care

2017 ◽  
Vol 32 (1) ◽  
pp. 36-45 ◽  
Author(s):  
Caroline Shulman ◽  
Briony F Hudson ◽  
Joseph Low ◽  
Nigel Hewett ◽  
Julian Daley ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Service Use ◽  
Social Care ◽  
Care Service ◽  
Homeless People ◽  
Palliative Care Service ◽  
Care Providers ◽  
Health And Social Care ◽  
Formerly Homeless

Background: Being homeless or vulnerably housed is associated with death at a young age, frequently related to medical problems complicated by drug or alcohol dependence. Homeless people experience high symptom burden at the end of life, yet palliative care service use is limited. Aim: To explore the views and experiences of current and formerly homeless people, frontline homelessness staff (from hostels, day centres and outreach teams) and health- and social-care providers, regarding challenges to supporting homeless people with advanced ill health, and to make suggestions for improving care. Design: Thematic analysis of data collected using focus groups and interviews. Participants: Single homeless people ( n = 28), formerly homeless people ( n = 10), health- and social-care providers ( n = 48), hostel staff ( n = 30) and outreach staff ( n = 10). Results: This research documents growing concern that many homeless people are dying in unsupported, unacceptable situations. It highlights the complexities of identifying who is palliative and lack of appropriate places of care for people who are homeless with high support needs, particularly in combination with substance misuse issues. Conclusion: Due to the lack of alternatives, homeless people with advanced ill health often remain in hostels. Conflict between the recovery-focused nature of many services and the realities of health and illness for often young homeless people result in a lack of person-centred care. Greater multidisciplinary working, extended in-reach into hostels from health and social services and training for all professional groups along with more access to appropriate supported accommodation are required to improve care for homeless people with advanced ill health.

Building a Transdisciplinary Approach to Palliative Care in an Acute Care Setting

2013 ◽  
Vol 67 (1-2) ◽  
pp. 43-51 ◽  
Author(s):  
Donnelle Daly ◽  
Stephen Chavez Matzel
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Acute Care ◽  
Care Setting ◽  
Care Service ◽  
Palliative Care Service ◽  
Assessment Tools ◽  
Community Resources ◽  
Acute Care Setting ◽  
Transdisciplinary Approach

A transdisciplinary team is an essential component of palliative and end-of-life care. This article will demonstrate how to develop a transdisciplinary approach to palliative care, incorporating nursing, social work, spiritual care, and pharmacy in an acute care setting. Objectives included: identifying transdisciplinary roles contributing to care in the acute care setting; defining the palliative care model and mission; identifying patient/ family and institutional needs; and developing palliative care tools. Methods included a needs assessment and the development of assessment tools, an education program, community resources, and a patient satisfaction survey. After 1 year of implementation, the transdisciplinary palliative care team consisted of seven palliative care physicians, two social workers, two chaplains, a pharmacist, and End-of-Life Nursing Consortium (ELNEC) trained nurses. Palomar Health now has a palliative care service with a consistent process for transdisciplinary communication and intervention for adult critical care patients with advanced, chronic illness.

Aggressiveness of end-of-life care before and after the utilization of a palliative care service.

2011 ◽  
Vol 29 (15_suppl) ◽  
pp. 9135-9135
Author(s):  
W. Gonsalves ◽  
T. Tashi ◽  
T. Davies ◽  
S. Ortman ◽  
R. Thota ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Life Care ◽  
Before And After

Quality matters: Patterns of palliative interventions in metastatic colorectal cancer (mCRC) patients.

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 83-83
Author(s):  
Rebecca M. Prince ◽  
Shuyin Liang ◽  
Mantaj Brar ◽  
Stephanie Ramkumar ◽  
Adena Scheer ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Care Service ◽  
Quality Care ◽  
Symptom Relief ◽  
Palliative Care Service ◽  
Palliative Surgery ◽  
Cancer Center ◽  
The Mean ◽  
Mean Time

83 Background: Increasing recognition that high-quality end of life care is essential has resulted in internationally endorsed metrics allowing assessment of interventions at the end of life. Median survival for mCRC patients has improved to more than 24 months resulting in increased opportunity to undergo interventions for symptom relief at the end of life. We explored patterns of palliative interventions (chemotherapy, radiotherapy, surgery, endoscopy, drainage procedures) and outcomes in mCRC patients. Methods: A retrospective review was undertaken of all mCRC patients referred to the palliative care service from 2000 to 2010 at a tertiary cancer center in Toronto, Canada. Descriptive statistics, survival analysis and regression were employed. Results: A total of 542 patients were included of whom 52.8% were male, mean age was 62.8 years and 44.6% had stage 4 disease at diagnosis. Over the course of their disease 93.9% had an intervention at any time after their diagnosis including 27.5% of patients undergoing palliative surgery, 77% of patients had an intervention in the last year of life and 19.1% had an intervention in the last 30 days of life. The percentage of patients receiving interventions within the last 14 days of life were 1.23% for chemotherapy, 4.6% for radiotherapy, 0.5% for surgery, 10.4% for endoscopy and 23% drainage procedures. The mean time between referral to palliative care and death was 7 months (SD 10.4). For patients who received chemotherapy, the mean time between last chemotherapy and death was 9.5 months (SD 14.9). Overall survival for patients who did not receive chemotherapy was 28 months (SD 33) compared with 40 months (SD 32) for those who received chemotherapy. Regression analysis for risks of dying within 30 days of chemotherapy was limited by a low event rate. Increasing age was significantly associated with a lower risk of dying within 30 days of chemotherapy. Conclusions: In their final months of life, palliative mCRC patients undergo a significant number of interventions aiming to improve quality of life. These require considerable multi-disciplinary input with ramifications for quality care, planning for service provision and funding.

Association between family satisfaction and caregiver burden in cancer patients receiving outreach palliative care at home

2017 ◽  
Vol 16 (3) ◽  
pp. 260-268 ◽  
Author(s):  
Yoko Naoki ◽  
Yoshinobu Matsuda ◽  
Isseki Maeda ◽  
Hideka Kamino ◽  
Yoko Kozaki ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
End Of Life Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Family Satisfaction ◽  
Life Care ◽  
Care At Home

ABSTRACTObjective:Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction.Method:Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively.Results:Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ρ] = −0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [β] = −0.563, p = 0.01). Several burden items—including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else—were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions.Significance of results:Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.

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.

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