St Christopher's and the Future

2008 ◽  
Vol 56 (1) ◽  
pp. 63-75 ◽  
Author(s):  
Barbara Monroe ◽  
Penny Hansford ◽  
Malcolm Payne ◽  
Nigel Sykes
Keyword(s):  
Health Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Health Care Services ◽  
Care Service ◽  
Health Care Service ◽  
Cost Effective ◽  
Patient Choice ◽  
Life Care ◽  
Effective Models

The founding vision of St Christopher's Hospice was based on a recognition that permeating mainstream health care services would be essential and an emphasis on an adaptable philosophy rather than a building. Today, demographic and disease related changes mean that need and demand for end-of-life care will inevitably outstrip professional and financial resource. Hospices must engage with the development of cost-effective models of service delivery and rational planning. Only partnership working with the National Health Service, care homes, and others will ensure that appropriate care is available to everyone wherever the bed in which they die, regardless of diagnosis. Only collaboration and active engagement will ensure that future strategy in end-of-life care retains the original insight that its focus rightly includes not only patients but also the social context that will be affected by their death. Cost and patient choice dictate an emphasis on care at home. Health-promoting, public education and family-focused strategies will be essential. At a pivotal moment for the delivery of health care generally, hospices can play a vital part by marrying the role of “insistent conscience” of the health care service with continued cost-effective clinical innovation.

scholarly journals Last Chance to Care: An Autoethnography of End-of-Life Care in Indonesia

2018 ◽  
Author(s):  
Petra Wessner
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Service ◽  
Health Care Service ◽  
World Health ◽  
Life Care ◽  
Possible World ◽  
Palliative Care Services ◽  
Health Organization

In Australia, palliative care is an accepted and expected part of contemporary health care service provision. Efficacious palliative care focusses on managing pain and symptoms and making the patient as comfortable as possible (World Health Organization Definition of Palliative Care (WHO, 2010). As well, palliative care focusses on the spiritual and psycho-social dimensions of life (Martina, 2017), providing the opportunity for the patient and their family to continue to be engaged with life and self-determined decision making throughout palliation. In this account, utilizing the qualitative research method of autoethnography the Australian author describes her experience of caring for her Indonesian father-in-law in the last week of his life. She explores emerging tensions associated with local end-of-life care and Western care which trigger deeper feelings associated with losing a loved one, complicated by the recent and sudden loss of her own parents. Narration is a powerful tool for capturing the verisimilitude of everyday experiences, evoking in the reader a powerful resonance into a very personal inner life which is often not spoken about in academic texts. This account, a cultural story of dying in East Java, Indonesia, also provides insight into the author’s expectations, as an Australian and concludes with some reflections about the emerging position of palliative care services in Indonesia.

scholarly journals The emotional labour of quality improvement work in end of life care: a qualitative study of Patient and Family Centred Care (PFCC) in England

2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Richard Boulton ◽  
Annette Boaz
Keyword(s):  
Health Care ◽  
Quality Improvement ◽  
End Of Life ◽  
Patient Experience ◽  
End Of Life Care ◽  
Care Service ◽  
Unintended Consequences ◽  
Life Care ◽  
Emotional Labour ◽  
Service Staff

Abstract Background There is a growing emphasis on understanding patient experience in order to inform efforts to support improvement. This paper reports findings from an implementation study of an evidence-based intervention called Patient and Family Centred Care (PFCC) designed to tap into patient experiences as a basis for improvement. In this study the PFCC intervention was spread to a new service area (end of life care) and delivered at scale in England. The findings presented here focus specifically on one key aspect of the intervention: staff shadowing of patients, and the experiences of staff carrying out shadowing for the purposes of service improvements. Methods The study methods were ethnographic observations of key events, semi-structured interviews with members of participating teams and the programme implementation support team and managers, and a review of the documents used in the set up and running of the programme. Results One of the key strengths of the PFCC approach is to encourage staff through shadowing to engage with patient experience of services. Many staff described the process of shadowing as a transformative experience that alerted them to immediate areas where their services could be improved. However, engaging with patient experience of end of life care services also had unintended consequences for some staff in the form of emotional labour. Furthermore, we observed difficulties encountered by staff that are not accounted for in the existing PFCC literature relating to how care service structures may unevenly distribute the amount of ‘emotional labour’ that staff members need to invest in implementing the programme. Conclusions Connecting with patient experience is a crucial aspect of a number of quality improvement interventions that aim to help staff to engage with the lived experience of their services and reconnect their motivations for working in the health care system. However, there may be unintended consequences for health care service staff, particularly in sensitive areas of service delivery such as end of life care. The ‘emotional labour’ for staff of engaging in quality improvement work informed by patient experience should be considered in planning and supporting patient experience led quality improvement.

scholarly journals The emotional labour of quality improvement work in end of life care: a qualitative study of Patient and Family Centred Care in England

2019 ◽  
Author(s):  
Richard Boulton ◽  
Annette Boaz
Keyword(s):  
Health Care ◽  
Quality Improvement ◽  
End Of Life ◽  
Patient Experience ◽  
End Of Life Care ◽  
Care Service ◽  
Unintended Consequences ◽  
Life Care ◽  
Emotional Labour ◽  
Service Staff

Abstract BACKGROUND There is a growing emphasis on understanding patient experience in order to inform efforts to support improvement. This paper reports findings from an implementation study of an evidence-based intervention called Patient and Family Centred Care (PFCC) designed to tap into patient experiences as a basis for improvement. In this study the PFCC intervention was spread to a new service area (end of life care) and delivered at scale in England. The findings presented here focus specifically on one key aspect of the intervention: staff shadowing of patients, and the experiences of staff carrying out shadowing for the purposes of service improvements.METHODS The study methods were ethnographic observations of key events, semi-structured interviews with members of participating teams and the programme implementation support team and managers, and a review of the documents used in the set up and running of the programme.RESULTS One of the key strengths of the PFCC approach is to encourage staff through shadowing to engage with patient experience of services. Many staff described the process of shadowing as a transformative experience that alerted them to immediate areas where their services could be improved. However, engaging with patient experience of end of life care services also had unintended consequences for some staff in the form of emotional labour. Furthermore, we observed difficulties encountered by staff that are not accounted for in the existing PFCC literature relating to how care service structures may unevenly distribute the amount of ‘emotional labour’ that staff members need to invest in implementing the programme.CONCLUSIONS Connecting with patient experience is a crucial aspect of a number of quality improvement interventions that aim to help staff to engage with the lived experience of their services and reconnect their motivations for working in the health care system. However, there may be unintended consequences for health care service staff, particularly in sensitive areas of service delivery such as end of life care. The ‘emotional labour’ for staff of engaging in quality improvement work informed by patient experience should be considered in planning and supporting patient experience led quality improvement.

Novel implementation of IoT based non-invasive sensor system for real-time monitoring of intravenous fluid level for assistive e-healthcare

Circuit World ◽  
2019 ◽  
Vol 45 (3) ◽  
pp. 109-123 ◽  
Author(s):  
Partha Pratim Ray ◽  
Nishant Thapa ◽  
Dinesh Dash ◽  
Debashis De
Keyword(s):  
Health Care ◽  
Real Time ◽  
Health Care Services ◽  
Care Service ◽  
Health Care Service ◽  
Cost Effective ◽  
Sensor System ◽  
Fluid Level ◽  
Content Type ◽  
Non Invasive

Purpose The purpose of the study is to design and develop an pervasive and smart Internet of Things (IoT)-based sensor system to monitor he real-time intravenous (IV) fluid bag level. Design/methodology/approach This paper investigates such issue and performs several experiments to develop a non-invasive, semi-automatic system to monitor IoT-based IV fluid level in real-time. Findings The outcome of this study is a prototype hardware that includes an ESP8266 based embedded Web server to disseminate the fluid exhaust status flag to its connected users. Nurses can get the prompt intimation about the status of IV fluid bag whether it is about to get empty. Research limitations/implications IoT is the backbone of the proposed system. Multi-master system need to be studied in future. Practical implications Non-invasive and real-time IoT-based novel technique is developed with power-efficient and cost-effective pervasive sensors. Social implications This is applicable for pervasive and assistive e-health-care services by care givers and medical professionals. Originality/value The deployed system is controlled by ATtiny85 with help of LM35 temperature sensor. The results show a promising future of the proposed development in enhancing IoT-based smart health-care service in the coming days.

scholarly journals The emotional labour of quality improvement work in end of life care: a qualitative study of Patient and Family Centred Care in England

2019 ◽  
Author(s):  
Richard Boulton ◽  
Annette Boaz
Keyword(s):  
Health Care ◽  
Quality Improvement ◽  
End Of Life ◽  
Patient Experience ◽  
End Of Life Care ◽  
Care Service ◽  
Unintended Consequences ◽  
Life Care ◽  
Emotional Labour ◽  
Service Staff

Abstract BACKGROUND There is a growing emphasis on understanding patient experience in order to inform efforts to support improvement. This paper reports findings from an implementation study of an evidence-based intervention called Patient and Family Centred Care (PFCC) designed to tap into patient experiences as a basis for improvement. In this study the PFCC intervention was spread to a new service area (end of life care) and delivered at scale in England. The findings presented here focus specifically on one key aspect of the intervention: staff shadowing of patients, and the experiences of staff carrying out shadowing for the purposes of service improvements. METHODS The study methods were ethnographic observations of key events, semi-structured interviews with members of participating teams and the programme implementation support team and managers, and a review of the documents used in the set up and running of the programme. RESULTS One of the key strengths of the PFCC approach is to encourage staff through shadowing to engage with patient experience of services. Many staff described the process of shadowing as a transformative experience that alerted them to immediate areas where their services could be improved. However, engaging with patient experience of end of life care services also had unintended consequences for some staff in the form of emotional labour. Furthermore, we observed difficulties encountered by staff that are not accounted for in the existing PFCC literature relating to how care service structures may unevenly distribute the amount of ‘emotional labour’ that staff members need to invest in implementing the programme. CONCLUSIONS Connecting with patient experience is a crucial aspect of a number of quality improvement interventions that aim to help staff to engage with the lived experience of their services and reconnect their motivations for working in the health care system. However, there may be unintended consequences for health care service staff, particularly in sensitive areas of service delivery such as end of life care. The ‘emotional labour’ for staff of engaging in quality improvement work informed by patient experience should be considered in planning and supporting patient experience led quality improvement.

scholarly journals The emotional labour of quality improvement work in end of life care: a qualitative study of Patient and Family Centred Care in England

2019 ◽  
Author(s):  
Richard Boulton ◽  
Annette Boaz
Keyword(s):  
Health Care ◽  
Quality Improvement ◽  
End Of Life ◽  
Patient Experience ◽  
End Of Life Care ◽  
Care Service ◽  
Unintended Consequences ◽  
Life Care ◽  
Emotional Labour ◽  
Service Staff

Abstract BACKGROUND There is a growing emphasis on understanding patient experience in order to inform efforts to support improvement. This paper reports findings from an implementation study of an evidence-based intervention called Patient and Family Centred Care (PFCC) designed to tap into patient experiences as a basis for improvement. In this study the PFCC intervention was spread to a new service area (end of life care) and delivered at scale in England. The findings presented here focus specifically on one key aspect of the intervention: staff shadowing of patients, and the experiences of staff carrying out shadowing for the purposes of service improvements.METHODS The study methods were ethnographic observations of key events, semi-structured interviews with members of participating teams and the programme implementation support team and managers, and a review of the documents used in the set up and running of the programme.RESULTS One of the key strengths of the PFCC approach is to encourage staff through shadowing to engage with patient experience of services. Many staff described the process of shadowing as a transformative experience that alerted them to immediate areas where their services could be improved. However, engaging with patient experience of end of life care services also had unintended consequences for some staff in the form of emotional labour. Furthermore, we observed difficulties encountered by staff that are not accounted for in the existing PFCC literature relating to how care service structures may unevenly distribute the amount of ‘emotional labour’ that staff members need to invest in implementing the programme.CONCLUSIONS Connecting with patient experience is a crucial aspect of a number of quality improvement interventions that aim to help staff to engage with the lived experience of their services and reconnect their motivations for working in the health care system. However, there may be unintended consequences for health care service staff, particularly in sensitive areas of service delivery such as end of life care. The ‘emotional labour’ for staff of engaging in quality improvement work informed by patient experience should be considered in planning and supporting patient experience led quality improvement.

scholarly journals What does effective end-of-life care at home for children look like? A qualitative interview study exploring the perspectives of bereaved parents

2021 ◽  
pp. 026921632110233
Author(s):  
Cari Malcolm ◽  
Katherine Knighting
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Care Service ◽  
Life Care ◽  
Care Providers ◽  
Specialist Care ◽  
Bereaved Parents ◽  
Home Based ◽  
Qualitative Interview Study ◽  
At Home

Background: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely reported, particularly from the perspective of parents who experienced the death of a child at home. Aim: To explore the value and assess the effectiveness of an innovative model of care providing home-based, end-of-life care as perceived by families who accessed the service. Design: A qualitative descriptive study design was employed with in-depth semi-structured interviews conducted with bereaved parents. Setting/participants: Thirteen bereaved parents of 10 children supported by the home-based end-of-life care service. Results: Parents reported effective aspects of end-of-life care provided at home to include: (1) ability to facilitate changes in preferred place of death; (2) trusted relationships with care providers who really know the child and family; (3) provision of child and family-centred care; (4) specialist care and support provided by the service as and when needed; and (5) quality and compassionate death and bereavement care. Parents proposed recommendations for future home-based end-of-life care including shared learning, improving access to home-based care for other families and dispelling hospice myths. Conclusion: Parents with experience of caring for a dying child at home offer valuable input to future the policy and practice surrounding effective home-based, end-of-life care for children. New models of care or service developments should consider the key components and attributes for effective home-based end-of-life identified by bereaved parents in this study.

Refining Patient-Centered Measures of End-of-Life Care Quality for Children With Cancer

2021 ◽  
Author(s):  
Prasanna Ananth ◽  
Sophia Mun ◽  
Noora Reffat ◽  
Soo Jung Kang ◽  
Sarah Pitafi ◽  
...  
Keyword(s):  
Health Care ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Care Quality ◽  
Life Care ◽  
Children With Cancer ◽  
Symptom Screening ◽  
Palliative Care Consultation ◽  
Patient Reported

PURPOSE: There are no existing quality measures (QMs) to optimize end-of-life care for children with cancer. Previously, we developed a set of 26 candidate QMs. Our primary objective in this study was to achieve stakeholder consensus on priority measures. METHODS: We conducted an iterative, cross-sectional electronic survey, using a modified Delphi method to build consensus among clinician and family stakeholders. In each of the two rounds of surveys, stakeholders were asked to rate QMs on a 9-point Likert scale, on the basis of perceived importance. Health care professionals were additionally asked to rate measures on perceived feasibility. After each round, we computed median scores on importance and feasibility of measurement, retaining QMs with median importance scores ≥ 8. RESULTS: Twenty-five participants completed both rounds of the survey. In round 1, participants were asked to rate 26 QMs; nine QMs, including QMs pertaining to health care use, were removed because of median importance scores < 8. Two new measures were proposed for consideration in round 2, on the basis of participant feedback. Following round 2, 17 QMs were ultimately retained. QMs related to symptom screening and palliative care consultation were rated highly in importance and feasibility. QMs related to communication were rated highly important, yet less feasible. Measuring whether a patient's needs were heard by their health care team was rated among the least feasible. CONCLUSION: Childhood cancer stakeholders prioritized QMs pertaining to patient-reported outcomes, deeming measures of health care resource use less important. Future research should seek to develop novel tools for quality assessment to enhance feasibility of implementing priority measures.

On the Margins of Death: A Scoping Review on Palliative Care and Schizophrenia

2018 ◽  
Vol 34 (1) ◽  
pp. 62-69 ◽  
Author(s):  
Erin Relyea ◽  
Brooke MacDonald ◽  
Christina Cattaruzza ◽  
Denise Marshall
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Access To Care ◽  
End Of Life ◽  
Health Care Providers ◽  
Scoping Review ◽  
End Of Life Care ◽  
Psychosocial Interventions ◽  
Life Care ◽  
Care Providers

Schizophrenia is a serious chronic mental illness that results in marginalization and stigma for sufferers. It is the seventh leading cause for disability worldwide. The symptoms of the illness, including hallucinations, delusions, and extremely disordered thinking and behavior, may also introduce barriers to accessing treatment, education, housing, and employment. Little is known about end-of-life care for individuals with schizophrenia. To address this gap, a scoping review was conducted to enhance understanding of hospice and palliative care for patients with schizophrenia. From this scoping review, 342 unique titles and abstracts were identified through a search of 20 databases, including 11 social science databases, 6 medical databases, and 3 gray literature databases. A total of 32 articles met the inclusion criteria and the following 4 themes were identified: Stigma affecting quality of care and access to care; Issues related to consent and capacity for the patient’s end-of-life care decisions and to appoint substitute decision makers; Best practices for psychosocial interventions, pharmacology, family and health-care collaborations, goals of care, setting, and smoking; and Barriers to care, including setting, communication, provider education, and access to care. The review suggests the importance of mandatory interdisciplinary training practices and policy standards outlining cooperative communication across health-care providers. It highlights gaps in evidence-based research on psychosocial interventions and collaborative frameworks to enable the provision of quality end-of-life care for individuals with schizophrenia.

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