Did Ontario's End-of-Life Care Strategy Reduce Acute Care Service Use?: The need to use quality indicators for improvement

Background: Studies comparing end-of-life care between patients who are high cost users of the healthcare system compared to those who are not are lacking. Aim: The objective of this study was to describe and measure the association between high cost user status and several health services outcomes for all adults in Canada who died in acute care, compared to non-high cost users and those without prior healthcare use. Settings and participants: We used administrative data for all adults who died in hospital in Canada between 2011 and 2015 to measure the odds of admission to the intensive care unit (ICU), receipt of invasive interventions, major surgery, and receipt of palliative care during the hospitalization in which the patient died. High cost users were defined as those in the top 10% of acute healthcare costs in the year prior to a person’s hospitalization in which they died. Results: Among 252,648 people who died in hospital, 25,264 were high cost users (10%), 112,506 were non-high cost users (44.5%) and 114,878 had no prior acute care use (45.5%). After adjustment for age and sex, high cost user status was associated with a 14% increased odds of receiving an invasive intervention, a 15% increased odds of having major surgery, and an 8% lower odds of receiving palliative care compared to non-high cost users, but opposite when compared to patients without prior healthcare use. Conclusions: Many patients receive aggressive elements of end-of-life care during the hospitalization in which they die and a substantial number do not receive palliative care. Understanding how this care differs between those who were previously high- and non-high cost users may provide an opportunity to improve end of life care for whom better care planning and provision ought to be an equal priority.

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

Palliative Medicine ◽

10.1177/02692163211023300 ◽

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.

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

The Qualitative Report ◽

10.46743/2160-3715/2018.3309 ◽

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.

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End of life in hospitalised prisoners: a group comparison of palliative medicine and hospital use

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2020-002703 ◽

2021 ◽

pp. bmjspcare-2020-002703

Author(s):

Stacey Panozzo ◽

Tamsin Bryan ◽

David Marco ◽

Anna Collins ◽

Carrie Lethborg ◽

...

Keyword(s):

Palliative Care ◽

End Of Life ◽

Acute Care ◽

End Of Life Care ◽

Public Hospital ◽

Prison Population ◽

Care Hospital ◽

Life Care ◽

Comparator Group ◽

Population Demographic

BackgroundProviding optimal palliative and end-of-life care for people in prison with advanced progressive disease is a growing challenge. This study aimed to examine hospital and palliative care utilisation for people in prison who are hospitalised during the final 3 months of life and to compare with a disease-matched non-incarcerated patient cohort.MethodsA retrospective cohort study of people in prison who died between 2009 and 2019 in an Australian public hospital that provides tertiary-level healthcare for 18% of Australia’s prison population. Demographic, clinical and service use data were extracted from medical records of eligible patients experiencing incarceration (prison group) and a disease-matched, non-incarcerated patient comparator group (comparator group).ResultsAt the time of death, patients in the prison group were aged a median of 20 years younger than the comparator group (median age 58 vs 78 years, p<0.01). The prison group experienced more than double the mean length of acute care hospital stay at the end of life. A higher proportion of patients in the prison group experienced an intensive care unit episode (22% vs 12%). More than two-thirds (71%) of the prison group patients were seen by palliative care prior to death, similar to the comparator group (p=0.44). Those transferred to the palliative care unit had a shorter length of stay and were admitted later, just prior to death (median 5 vs 8 days).ConclusionsPeople in prison have prolonged acute care public hospital stays and are more likely to experience escalation of care at the end of life. Future opportunity may exist for increased access to formal subacute care settings for people in prison with life-limiting illness to receive optimal palliative and end-of-life care.

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Appropriateness of End-of-Life Care in People Dying With Dementia: Applying Quality Indicators on Linked Administrative Databases

Journal of the American Medical Directors Association ◽

10.1016/j.jamda.2019.12.020 ◽

2020 ◽

Vol 21 (8) ◽

pp. 1093-1101.e1

Author(s):

Robrecht De Schreye ◽

Tinne Smets ◽

Luc Deliens ◽

Lieven Annemans ◽

Birgit Gielen ◽

...

Keyword(s):

End Of Life ◽

Quality Indicators ◽

End Of Life Care ◽

Administrative Databases ◽

Life Care

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7 Realist evaluation of a coordinated end-of-life care service

10.1136/bmjspcare-2018-aspabstracts.7 ◽

2018 ◽

Author(s):

Nikolaos Efstathiou ◽

Anna Lock ◽

Suha Ahmed ◽

Linda Parkes ◽

Susan Law ◽

...

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Care Service ◽

Realist Evaluation ◽

Life Care

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

BMC Health Services Research ◽

10.1186/s12913-019-4762-1 ◽

2019 ◽

Vol 19 (1) ◽

Cited By ~ 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.

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