Unequal access to hospice care across England

Patients with incurable illnesses, among them dementia, liver failure  are not receiving hospice care soon enough finds a Leeds University study. The NIHR funded study, which is also the first of its kind to look at this issue is (via Leeds University

The researchers examined data from about one third of the UK’s hospices, including patient records of more than 42,000 people who died in 2015 with a progressive, advanced disease, after receiving community or inpatient palliative care at a hospice included in the study.

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Among their key findings are that patients with cancer were admitted for hospice care 53 days before dying, for patients without cancer this was later with a referral 27 days before death.  The team also identified variation across the coutnry with patients in the North admitted later than those in the South, Midlands and East of England.

 

Lead author of the study Dr Matthew Allsop said, “There are misconceptions held by the public and healthcare professionals about what palliative care is, who it is for, and when people can benefit from access to it.

“Palliative care is for any person diagnosed with a terminal illness, not just those with cancer. It aims to help patients and their families achieve the best quality of life through treating or managing physical symptoms, and helping with any psychological, social or spiritual needs (Source: Univeristy of Leeds).

The research has now been published in Palliative Medicine, the article can be read in full via Sage

Related: NIHR NIHR research highlights disparities in end-of-life hospice care

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The state of hospice services in England 2014 to 2017

The state of hospice services in England 2014 to 2017 presents findings from the Care Quality Commission’s programme of inspections.

The CQC inspected hospice services in England between October 2014 and January 2017.

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Image source: http://www.cqc.org.uk

The results found that Hospice care across England has the highest percentage of health and social care services that are rated outstanding (25%), and a further 70% are rated good.

The inspections found that hospice leaders and frontline staff displayed a strong commitment to providing truly person-centred, compassionate care and support to people using their services, and their loved ones. They also developed strong relationships with other services in the area.

However, the report makes the case that there is more to be done to make sure that everyone, regardless of their background or circumstances, can access high-quality end of life care. Hospice services rated as outstanding were striving to overcome such inequalities and share their expertise to drive better care in other services.

Full report: The state of hospice services in England 2014 to 2017. Findings from CQC’s initial programme of comprehensive inspections of hospice services 

Transferring Palliative Care Inpatients to Residential Care

The survival of patients with advanced cancer, coupled with the increased presence of end-stage chronic illnesses in an aging population, is leading to a demand in palliative care | Journal of Social Work in End-of-Life & Palliative Care

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Due to the ongoing need for acute-pain and symptom control in hospice/palliative care units, few are able to offer long-stay admission for those whose symptoms have stabilized. When a patient no longer requires specialist palliative care services, transfer from an inpatient palliative care facility may then be necessary. A core component of the role of palliative-care social workers involves working with patients and their families/carers when the care pathway shifts and the option of residential aged care facility (RACF) needs to be considered.

This research explored several issues, including the impact of this transition on the patient and their families and on the interdisciplinary health care team treating the patient. An investigation was undertaken to identify concerns and barriers regarding the transition from hospice care to RACF and opportunities were highlighted to improve clinical practice in this area. A tripartite approach was adopted conducting face-to-face interviews with patients, their families/carers, and health care professionals. Members of the interdisciplinary team were interviewed and social workers working in similar inpatient palliative-care facilities undertook telephone interviews to gauge their experiences. A thematic analysis discerned a number of themes highlighting the impact of this transition on key stakeholders and incorporated recommendations to improve or best manage this process.

The research has highlighted the difficulties that patients/families encounter in this transition, as well as the emphases of protecting the integrity of the patient and family. This is achieved by holding open and ongoing dialogue, particularly through family meetings and working in collaboration with the patient, the family, and the team. Understanding the experience and impact of this transition on key stakeholders is helpful in building up a knowledge base and to ensure a more effective relationship occurs. This research incorporated the voices of terminally ill patients, families, and members of the health care team in order to understand their views and recommendations for best managing the transition from a hospice/inpatient palliative-care facility to a RACF. This enables their input to have some real impetus in clinical practice and service delivery.

Full reference:  Kallianis, V. et al. (2017) “Unexpected and Distressing”: Understanding and Improving the Experience of Transferring Palliative Care Inpatients to Residential Care. Journal of Social Work in End-of-Life & Palliative Care. Published online: 1 June 2017

Suitable support for anxious hospice patients

Investigation to provide insight into what nurses know, do and need to provide support to anxious patients in hospice care (HC) | BMJ Supportive & Palliative Care

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Methods: A mixed method study consisted of an online survey and focus groups (FGs) about what nurses know, do, and need was conducted. 336 HC nurses were invited to participate. Descriptive statistics were computed using SPSS. The χ2 and t-tests were conducted to compare. The FGs were transcribed verbatim and thematically analysed.

Results: The survey was completed by 265 nurses (79%), and five FGs (n=25) were conducted. Most nurses had >10 years working experience; mean age was 52. The majority (59%) felt that they were equipped with sufficient knowledge; however, lack of knowledge (31%) as well as lack of time (50%) were hampering factors. Identification of anxiety was difficult due to the variety of its expression. Tools for identifying were used by 37%. Interventions were generally chosen intuitively. A major responsibility was experienced in caring for patients with panic attacks during late night shifts, making immediate decisions necessary.

Conclusion: This study highlights the struggles of nurses caring for anxious patients in HC. Anxiety management is dependent on the competencies and preferences of the individual nurse. One-third of the nurses require additional training. According to HC nurses, the intervention set should include guidelines for applying assessment tools, effective communication strategies and decision models as well as prediction models in order to select tailored interventions. Future research should focus on patients’ perspectives in order to understand crucial measures for anxiety management.

Full reference: Zweers. D. et al. (2017) Suitable support for anxious hospice patients: what do nurses ‘know’, ‘do’ and ‘need’? An explanatory mixed method study. BMJ Supportive & Palliative Care. Published Online First: 30 June 2017.

Obesity associated with less hospice use

scales-1426079_1280A study led by researchers at University of Pittsburgh has found that obesity was associated with less hospice use and in-home death and more Medicare costs during the last six months of life. The team reported in Annals of Internal Medicine on the retrospective cohort study, using data from the Health and Retirement Study.

Morbidly obese patients were found to be the group least likely to use hospice.

Reference: John A. Harris eta l. The Relationship of Obesity to Hospice Use and Expenditures: A Cohort Study Annals of Internal Medicine. [Epub ahead of print 7 February 2017]

The experience of providing end of life care at a children’s hospice

McConnell, T. & Porter, S. BMC Palliative Care. Published online: 13 February 2017

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Background: More attention is being paid to the wellbeing of staff working in stressful situations. However, little is known about staff experience of providing end-of-life care to children within a hospice setting. This study aims to explore the experiences of care team staff who provide end-of-life care within a children’s hospice.

Conclusions: Service and policy initiatives should encourage open, informal peer/organisational support among the wider children’s palliative care sector. Further research should focus on paediatric palliative care education, particularly in relation to symptom management and communication at end-of-life, harnessing the expertise and breadth of knowledge that could be shared between children’s hospices and hospital settings.

Read the full article here

Treatment targeted at underlying disease versus palliative care in terminally ill patients

Reljic, T. et al. BMJ Open. 7:e014661

Objective: To assess the efficacy of active treatment targeted at underlying disease (TTD)/potentially curative treatments versus palliative care (PC) in improving overall survival (OS) in terminally ill patients.

Results: Initial search identified 8252 citations of which 10 RCTs (15 comparisons, 1549 patients) met inclusion criteria. All RCTs included patients with cancer. OS was reported in 7 RCTs (8 comparisons, 1158 patients). The pooled results showed no statistically significant difference in OS between TTD and PC (HR (95% CI) 0.85 (0.71 to 1.02)). The heterogeneity between pooled studies was high (I2=62.1%). Overall rates of adverse events were higher in the TTD arm.

Conclusions: Our systematic review of available RCTs in patients with terminal illness due to cancer shows that TTD compared with PC did not demonstrably impact OS and is associated with increased toxicity. The results provide assurance to physicians, patients and family that the patients’ survival will not be compromised by referral to hospice with focus on PC.

Read the full article here