Supportive and palliative care needs of families of children with life-threatening illnesses in Western Australia: evidence to guide the development of a palliative care service

2007 ◽  
Vol 21 (8) ◽  
pp. 689-696 ◽  
Author(s):  
Leanne Monterosso ◽  
Linda J. Kristjanson ◽  
Samar Aoun ◽  
Marianne B. Phillips
Keyword(s):  
Palliative Care ◽  
Western Australia ◽  
Care Service ◽  
Palliative Care Service ◽  
Care Needs ◽  
Life Threatening ◽  
Palliative Care Needs

The lived experience of patients suffering from stroke and their perception of palliative care needs: a literature review

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Marwa Halabi ◽  
Inaam Khalaf ◽  
Salam Bani Hani
Keyword(s):  
Palliative Care ◽  
Literature Review ◽  
Lived Experience ◽  
Care Service ◽  
Health Care Service ◽  
Stroke Recovery ◽  
Care Needs ◽  
Middle Income ◽  
Content Type ◽  
Palliative Care Needs

Purpose This study aims to review the lived experience of patients suffering from stroke and describe their perception of palliative care needs. Design/methodology/approach A literature review search was conducted. Web of Sciences, SAGE, CINAHL, PubMed and Jordanian Database for Nursing Research databases were used to search the literature. Findings The findings of 37 articles were address palliative care approaches for patients with stroke, lived experiences of patients suffering from stroke and the experience, barriers and facilitators related to health-care service for stroke survivors. Originality/value This review indicated the importance of recognizing palliative care needs among patients suffering from stroke to improve post-stroke recovery. This study recommends further research, especially in low- and middle-income countries, to understand patients’ experiences and recognize the main palliative care needs that can be incorporated into interventions designed to improve the quality of life among them.

scholarly journals Adaptations to palliative home care in India in a COVID pandemic: An experiential narrative

2021 ◽  
Vol 73 ◽  
pp. 48-51
Author(s):  
Sunil Rameshchandra Dhiliwal ◽  
Ashish Gulia ◽  
Naveen Salins
Keyword(s):  
Palliative Care ◽  
Service Delivery ◽  
Care Service ◽  
Palliative Care Service ◽  
Personal Protection ◽  
Care Needs ◽  
Personal Protection Equipment ◽  
Complex Needs ◽  
Care Access ◽  
Home Based

India is in the midst of a fierce pandemic with a rapid surge of cases and the health-care system in a quandary. Care of patients with life-limiting illness needing palliative care has been compromised due to limitations in palliative care access and a paradigm shift in the hospital toward care of COVID. Therefore, it is imperative to augment the home-based services so that patients continue to remain at home with their care needs met so that their access to hospitals is restricted for acute and complex needs. To overcome practical aspects of home-based care service delivery, several adaptations were needed. An urban standalone home-based palliative care service provider made adaptations to personal protection, personal protection equipment, and team self-care that facilitated an effective service delivery and satisfaction.

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.

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.

Paediatric palliative care

2019 ◽  
pp. 477-536
Keyword(s):  
Palliative Care ◽  
Patient Population ◽  
Palliative Medicine ◽  
Survival Rates ◽  
Care Needs ◽  
Paediatric Palliative Care ◽  
Adult World ◽  
Life Threatening ◽  
Palliative Care Needs

This chapter describes the emergence of the field of paediatric palliative care. It looks at the differences between children’s palliative care and the adult world. It goes on to discuss the management of various symptoms looking particularly at the pharmacological approaches that can be used. All dosages are aligned with the Association of Paediatric Palliative Medicine formulary guidelines. Advances in the treatment of life-threatening neonatal and paediatric conditions have dramatically improved survival rates over recent years. One of the most striking reductions in mortality has been achieved for children with malignant conditions, although there remain certain forms of cancer for which the prognosis remains extremely poor. Similarly, despite advances, there is a range of non-malignant conditions which continue to be life-limiting. The patient population in paediatric palliative care is quite different from that encountered in adult practice. Approximately 25–30% of children with palliative care needs have a malignancy.

scholarly journals Outcomes and factors influencing care decisions in life-threatening fetal and neonatal anomalies

2020 ◽  
Author(s):  
Esther J Lee ◽  
Simone Stenekes ◽  
Michael Harlos
Keyword(s):  
Palliative Care ◽  
Chart Review ◽  
Care Service ◽  
Palliative Care Service ◽  
Retrospective Chart Review ◽  
Inclusion Criteria ◽  
Factors Influencing ◽  
Life Threatening ◽  
Perinatal Palliative Care ◽  
The Mean

Objective: A retrospective chart review was undertaken to describe the outcomes following the diagnosis of a life-threatening fetal and neonatal anomaly. Study Design: Criteria for a life-threatening anomaly included genetic conditions, renal and pulmonary diseases, central nervous system anomalies (CNS), and cardiac defects. Information that could impact decision making was collected from provincial databases Results: 176 patients met the inclusion criteria. The majority of the diagnoses were in the genetic and CNS categories. 58% (n=103) decided to terminate the pregnancy. When a live birth occurred (n=39), the mean length of survival was 13.5 days (range 1-156 days), with one death occurring at home. Conclusions: Ethnicity and geographical factors were associated with the decision to terminate a pregnancy. The involvement of the palliative care service was associated with decreased interventions. Further research to determine the needs of families would be helpful in identifying program priorities in perinatal palliative care.

scholarly journals Palliative Care Needs among Patients with Advanced Illnesses in Bhutan

2020 ◽  
Author(s):  
Tara Devi Laabar ◽  
Christobel Saunders ◽  
Kirsten Auret ◽  
Claire E Johnson
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Developed Countries ◽  
World Health ◽  
Small Community ◽  
Care Model ◽  
Care Needs ◽  
Quality Of Life Scale

Abstract Background: Palliative care improves the quality of lives of patients and families affected by advanced illnesses through the prevention and relief of suffering. While palliative care is well established in developed countries, it is inadequate or non-existent in most developing countries. Palliative care is an emerging concept in Bhutan, a tiny Himalayan Kingdom. A small community palliative care service is available in the national referral hospital with three dedicated inpatient palliative care beds. This study explored the needs for palliative care among patients diagnosed with advanced illnesses and is a component of a larger project aimed to inform a suitable palliative care model for the country. Methods: This is a cross-sectional descriptive study. A survey, using a structured questionnaire including the EORTC QLQ-C30, was carried out among patients with advanced illness in hospitals, primary care units and communities across the country. Purposeful and snowball sampling strategies were used to recruit study participants. Results: Seventy (76%), out of 93 eligible patients, agreed to participate in the survey. Participants reported low to moderate scores on physical, role, emotional, cognitive and social functioning, a moderate score for the global health/ quality of life scale and moderately high (worse) scores in symptoms including fatigue, pain, insomnia, loss of appetite and the financial impact from the disease. Conclusions: The symptom burden experienced by patients affected by advanced illnesses demonstrates the need for palliative care in Bhutan. These findings will help inform the development of a public health-focused palliative care model, modified to the Bhutanese context, as recommended by the World Health Organization.

scholarly journals Palliative Care Needs among Patients with Advanced Illnesses in Bhutan

2020 ◽  
Author(s):  
Tara Devi Laabar ◽  
Christobel Saunders ◽  
Kirsten Auret ◽  
Claire E Johnson
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Developed Countries ◽  
World Health ◽  
Small Community ◽  
Care Model ◽  
Care Needs ◽  
Quality Of Life Scale

Abstract Background: Palliative care improves the quality of lives of patients and families affected by advanced illnesses through the prevention and relief of suffering. While palliative care is well established in developed countries, it is inadequate or non-existent in most developing countries. Palliative care is an emerging concept in Bhutan, a tiny Himalayan Kingdom. A small community palliative care service is available in the national referral hospital with three dedicated inpatient palliative care beds. This study explored the needs for palliative care among patients diagnosed with advanced illnesses and is a component of a larger project aimed to inform a suitable palliative care model for the country. Methods: This is a cross-sectional descriptive study. A survey, using a structured questionnaire including the EORTC QLQ-C30, was carried out among patients with advanced illness in hospitals, primary care units and communities across the country. Purposeful and snowball sampling strategies were used to recruit study participants. Results: Seventy (76%), out of 93 eligible patients, agreed to participate in the survey. Participants reported low to moderate scores on physical, role, emotional, cognitive and social functioning, a moderate score for the global health/ quality of life scale and moderately high (worse) scores in symptoms including fatigue, pain, insomnia, loss of appetite and the financial impact from the disease. Conclusions: The symptom burden experienced by patients affected by advanced illnesses demonstrates the need for palliative care in Bhutan. These findings will help inform the development of a public health-focused palliative care model, modified to the Bhutanese context, as recommended by the World Health Organization.

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