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.


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


How can primary care enhance end-of-life care for liver disease?

Qualitative study of general practitioners’ perceptions and experiences | BMJ Open

Liver disease is the third most common cause of premature death in the UK. The symptoms of terminal liver disease are often difficult to treat, but very few patients see a palliative care specialist and a high proportion die in hospital. Primary care has been identified as a setting where knowledge and awareness of liver disease is poor. Little is known about general practitioners’ (GPs) perceptions of their role in managing end-stage liver disease.

GPs expressed a desire to be more closely involved in end-of-life care for patients with liver disease but identified a number of factors that constrained their ability to contribute. These fell into three main areas; those relating directly to the condition, (symptom management and the need to combine a palliative care approach with ongoing medical interventions); issues arising from patients’ social circumstances (stigma, social isolation and the social consequences of liver disease) and deficiencies in the organisation and delivery of services. Collaborative working with support from specialist hospital clinicians was regarded as essential, with GPs acknowledging their lack of experience and expertise in this area.

Full reference: Standing, H. et al. (2017) How can primary care enhance end-of-life care for liver disease? Qualitative study of general practitioners’ perceptions and experiences. BMJ Open. 7:e017106.

End of life strategy probably improved choice of where to die for people with severe respiratory disease

Most people prefer not to die in hospital, but the majority of patients with long-term diseases other than cancer end up dying there | NIHR Signal

In England, an NIHR study based on routine collected national data showed that roll-out of the End of Life Care strategy in 2004 was linked to a reduction in deaths in hospital. The number of deaths here fell by 6% for people with chronic obstructive pulmonary disease (COPD), and 3% for people with interstitial lung diseases. However, hospital deaths did not fall for respiratory patients with other conditions, like heart failure.

The strategy aimed to allow people to die where they chose. It prioritised home care over hospital care, and addressing the needs and preferences of patients and carers.

The fall in the number of hospital deaths is probably the result of the strategy. The results are similar to those observed in cancer care, and the reduction in hospital deaths clearly emerged after the strategy was introduced, and increased after an intensified roll-out in 2008.

To improve impact, early and integrated palliative care approaches are needed, targeting those at highest risk. Particular focus should be on patients with comorbidities and people living in more deprived areas, where place of death has remained unchanged.

Advance care planning uptake among patients with severe lung disease

Sinclair, C. et. al. (2017) BMJ Open. 7:e013415

Objective: Advance care planning (ACP) clarifies goals for future care if a patient becomes unable to communicate their own preferences. However, ACP uptake is low, with discussions often occurring late. This study assessed whether a systematic nurse-led ACP intervention increases ACP in patients with advanced respiratory disease.

Conclusions: Nurse-led facilitated ACP is acceptable to patients with advanced respiratory disease and effective in increasing ACP discussions and completion of formal documents. Awareness of symptom burden, readiness to engage in ACP and relevant psychosocial factors may facilitate effective tailoring of ACP interventions and achieve greater uptake.

Read the full article here

Community-Based Palliative Care & Reduced Emergency Department Visits

Spilsbury, K. Annals of Emergency Medicine. Published online: 3 February 2017

Historically, palliative care evolved to meet the end-of-life needs of cancer patients. It has since become apparent that it benefits noncancer terminal conditions such as renal failure, heart failure, chronic obstructive pulmonary disease, and liver failure, although access to and quality of palliative care for these conditions could be improved. In Australia, there has been evidence of this improved access to palliative care in noncancer conditions during the last 10 years.

The objective of this study was to describe patterns of use of EDs by people in their last year of life and how this varied when they received community-based palliative care. We also investigated whether any patient health, social, and demographic factors modified the rates of ED visits while patients were receiving community-based palliative care.

Read the full article here

What determines duration of palliative care before death for patients with advanced disease?

Bennet, M.L. et al. (2016) BMJ Open. 6:e012576


Objective For patients with advanced cancer, several randomised controlled trials have shown that access to palliative care at least 6 months before death can improve symptoms, reduce unplanned hospital admissions, minimise aggressive cancer treatments and enable patients to make choices about their end-of-life care, including exercising the choice to die at home. This study determines in a UK population the duration of palliative care before death and explores influencing factors.

Conclusions The current timing of referral to palliative care may limit the benefits to patients in terms of improvements in end-of-life care, particularly for older patients and patients with conditions other than cancer.

Read the full abstract and article here

Palliative care for Parkinson’s disease: Patient and carer’s perspectives explored through qualitative interview

Fox, S. et al. Palliative Medicine. Published online: September 28 2016


Background: Palliative care is recommended for non-malignant illnesses, including Parkinson’s disease. However, past research with healthcare workers highlights unmet palliative needs in this population and referral rates to Specialist Palliative Care are low. Some healthcare workers perceive a ‘fear’ in their patients about introducing palliative care. However, less is known about the views of people with Parkinson’s disease and their carers about palliative care.

Aim: (1) To explore the palliative care and related issues most affecting people with Parkinson’s disease and their families and (2) to examine perceptions about/understanding of palliative care.

Design: This was a qualitative study; semi-structured interviews were conducted, transcribed and analysed using thematic analysis.

Setting/participants: A total of 31 people participated, both people with Parkinson’s disease (n = 19) and carers (n = 12), across three Movement Disorder Clinics in the Republic of Ireland.

Results: People with Parkinson’s disease and their carers were unfamiliar with the term palliative care. When informed of the role of palliative care, most felt that they would benefit from this input. People with Parkinson’s disease and carers experienced a high illness burden and wanted extra support. Crises requiring Specialist Palliative Care involvement may occur at diagnosis and later, with advancing illness. Participants wanted more information about palliative care and especially further supports to address their psychosocial needs.

Conclusion: A holistic palliative care approach could address the complex physical and psychosocial symptoms experienced by people with Parkinson’s disease and their carers, and people with Parkinson’s disease and their carers are open to palliative care. Further research needs to explore how palliative care can be introduced into the routine care for people with Parkinson’s disease.

Read the abstract here