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.

The outcome of outpatient palliative care service at Yonsei Cancer Center, a tertiary cancer center in Korea.

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 131-131
Author(s):  
Si Won Lee ◽  
Hye Jin Choi
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Group Performance ◽  
Care Service ◽  
Symptom Control ◽  
Palliative Care Service ◽  
Cancer Center ◽  
Anticancer Treatment ◽  
Tertiary Cancer Center

131 Background: The importance of palliative care in cancer patients continues to be emphasized and studies are proving its importance. Several studies proved the improvement of quality of life in advanced cancer patients. The efficacy of symptom control based on outpatient palliative care service has not yet been reported in Korea. The objective of this study is to review the outcome of outpatient palliative care service at Yonsei Cancer Center, a tertiary cancer center in Korea. Methods: We retrospectively reviewed 155 cancer patients who used outpatient clinic at Yonsei Cancer Center in Korea between April 2014 and December 2014. Symptom severity was measured by modified Korean version of Edmonton Symptom Assessment System. Twelve symptoms were assessed: pain, fatigue, nausea, depression, anxiety, drowsiness, dyspnea, sleep disorder, anorexia, constipation, wellbeing, financial distress. Higher score means worse symptom. ESAS scores at baseline and follow-up assessments were analyzed. Results: The 155 patients had following characteristics: female 52.3%, median age 65 years (range 58-75), Hepatobiliary-pancreatic cancer and lung cancer patients accounted for the largest portion (n = 37, 23.9%; n = 36, 23.2% respectively). Most patients were Eastern Cooperative Oncology Group performance status 1 (n = 28, 18.1%) or 2 (n = 24, 15.5%). Ninety-two (59.4%) patients were referred to the palliative care team after anti-cancer treatments were all finished. Overall the symptoms did not change significantly from baseline to 2 consecutive follow up assessment except anorexia ( p value = 0.0195). Patients who were on active anticancer treatment had tendency of higher ESAS score than those finished with the anticancer treatment. However, all symptoms except nausea were not statistically significant. Conclusions: Most patients in this study did not have severe symptom scores that would show the differences of the symptom changes. Nevertheless, although not statistically significant, we found that patients on active anticancer treatment had higher symptom burden than those who were finished with the anticancer treatment. More meticulous symptom management is necessary to improve the symptom control.

A retrospective review of patients with hematological malignancy referred to an inpatient palliative care service in a tertiary hospital.

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 117-117
Author(s):  
Yee Choon Meng ◽  
Mervyn Yong Hwang Koh ◽  
Zi Yan Chiam ◽  
Jun Jun Zhang ◽  
Yin Mei, Allyn Hum
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Retrospective Review ◽  
Hematological Malignancies ◽  
Hematological Malignancy ◽  
Care Service ◽  
Symptom Control ◽  
Palliative Care Service ◽  
Solid Organ ◽  
Care Needs

117 Background: Patients with hematological malignancies are referred to palliative care service later and less often than patients with solid organ tumor. However, there are no data in Singapore, on the referral pattern among patients with hematological malignancy. The objective of the study is to identify the characteristics and outcomes of patients with hematological malignancy referred to an In-patient Palliative Care Service (PCS). Methods: We performed a retrospective review of all patients with hematological malignancies referred to the in-patient PCS from December 2015 to December 2016. Basic demographics and outcomes of patients’ admission were collected as per protocol. Results: 53 patients were included in the study. 27 (50.9%) patients were male, 49 (92.5%) were ≥60 years old, 20 (37.7%) were receiving cancer treatment at the point of referral, and 24 (45.3%) had Palliative Performance Scale (PPS) ≤ 40%. The most common hematological diagnosis was lymphoma (N = 26, 49.1%). The top 3 reasons for referral were symptom management (N = 44; 83%), advance disease (N = 24; 45.3% and end-of-life discussion (N = 15, 28.3%). Among 44 patients referred for symptom control, 18 (40.9%) had pain, 12 (27.3%) had dyspnoea, 8 (18.2%) had confusion and 6 (13.6%) had fatigue or drowsiness. 30 patients (56.6%) died during the admission. Among 30 patients who died, the mean time from referral to death was 9.8 days; 16 (53.3%) died within 1 week from referral, 9 (30%) died between 1-4 weeks from referral and 5 (16.7%) died beyond 4 weeks after referral.5 patients (9.4%) had Advance Care Planning completed. Conclusions: Our review showed that patients with hematological malignancies are referred late in their disease trajectory and have high Palliative Care needs. Hence, collaborative effort to facilitate timely referral of patients with hematological malignancy to PCS will optimize end-of-life care.

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.

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.

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