How do we provide high quality palliative care in the community?

 

 

By Dr Tanuka Palit, NIHR Academic Clinical Fellow in Primary Care, Centre for Academic Primary Care, University of Bristol

“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.” Dame Cicely Saunders

Many people express a wish to die at home. The proportion of deaths that occurred in the community (including private homes and care homes) rose significantly during the pandemic and has been sustained. As a consequence, the need to fund and improve our community palliative care services has never been more important. Earlier this year, this was recognised by a change in the Health and Social Care Bill to fund palliative care services in all areas. This will hopefully remove the postcode lottery that currently exists in the UK for … Read more

Funerals in the COVID-19 pandemic – how restrictions might affect the bereaved

 

 

 

 

by Dr Alex Burrell, Foundation Year 2 doctor, North Bristol NHS Trust and Dr Lucy Selman, Senior Research Fellow, Centre for Academic Primary Care, University of Bristol

Restrictions on funeral attendance have been put in place to try to prevent the spread of COVID-19. We conducted a rapid systematic review to try to understand what impact these restrictions might have on the bereaved. We found that the impact of funeral practices was not clear-cut: observational studies assessed different outcomes and their results varied. However, there were important lessons from qualitative research. What seems to be most important is helping people create a meaningful personal ritual which provides a sense of social support however they mourn, whether together in person or virtually.

COVID-19 has caused hundreds of thousands of deaths around the world, with over 45,000 confirmed deaths in the UK as of 23 July … Read more

Care homes have long been neglected – the pandemic has shown us how bad things are

 

 

by Dr Lucy Pocock, GP Career Progression Fellow, Centre for Academic Primary Care, University of Bristol

Before COVID-19, there were around 10,000 deaths in care homes in England and Wales every month. Then, between March 27 and April 24 2020, the number more than doubled to 23,113.

The Office for National Statistics (ONS) later reported 17,422 deaths of care home residents from COVID-19 between the end of March and June 5, accounting for 47% of the total number of deaths caused by the virus.

So it is unsurprising that the pandemic has led to much greater interest in what happens inside care homes. As well as the significant increase in the number of residents dying, concerns have been raised about a lack of access to testing and personal protective equipment (PPE), the discharge of coronavirus-positive patients from hospital to care homes, rationalisation of the health … Read more

How coronavirus has transformed the grieving process

 

 

Dr Lucy Selman, Senior Research Fellow, Centre for Academic Primary Care, University of Bristol

As I write this, the UK government has just announced that 13,729 people have died in hospitals from COVID-19. Care England estimates more than 1,400 people have now died in care homes. As you read this, those appalling figures will have grown. The national medical director, Stephen Powis, has said that if the UK death tally comes in below 20,000, “we will have done very well”.

As a result, a wave of grief will swell in the coming months, with more and more people experiencing a close bereavement related to COVID-19. The disease brings new challenges in caring for patients and supporting their family and friends. A particularly cruel one is that patients must be isolated to control the spread of infection.

Since a patient’s loved ones are often unable to accompany … Read more

Why GPs and patients need to talk more openly about death

 

 

By Dr Lucy Pocock, GP Career Progression Fellow, Centre for Academic Primary Care, University of Bristol

Dealing with death is part of the job description for all doctors. For those working in general practice, this often means planning ahead, with GPs encouraged to keep a register of patients thought to be in the last year of their life.

One reason for this is to identify which patients might benefit from palliative and supportive care – the kind of care which focuses on symptom control, rather than cure. At the moment, these registers appear to consist mainly of patients with cancer. Yet most people (72%) in England don’t actually die of cancer. So why aren’t other dying patients being registered?

To answer this question, it is helpful to think about how we die. As a GP, I can often predict, to some degree, a decline … Read more

Why doctors need to improve the way we discuss assisted dying

Dr Paul Teed
PhD candidate
Centre for Academic Primary Care 
University of Bristol
@DrPaulTeed

Assisted dying can be a divisive and polarising subject. But there is one aspect on which most people probably agree – the need to improve the conversations people have about death.

At the moment, there is uncertainty in the UK regarding what people – especially health professionals – can and cannot say when the topic of assisted dying comes up. Conversation can become especially stilted when it turns to patients obtaining the medical documentation required for an assisted death abroad.

The situation requires clarification. Currently, if a doctor in the UK writes a specific report to help with an assisted death abroad (three organisations in Switzerland accept UK citizens), the General Medical Council (GMC) may view this as a “fitness to practice” issue.

However, if a doctor provides copies of medical records, even with the … Read more

How do we support GPs providing end of life care?

by Dr Lucy SelmanDr Lucy Selman
Research Fellow (Qualitative Research in Randomised Trials)
Centre for Academic Primary Care

GPs are vital to the delivery of end of life care. They coordinate care, provide generalist palliative care, help prevent unnecessary hospital admissions, and, in England, commission local health and social care services. Crucially, they help shift care from hospitals to the community, which is where most people would prefer to die.

But providing good care at the end of life is not always straightforward. There’s evidence that GPs can find it challenging, and that the quality of end of life care by GPs can be problematic. The Royal College of General Practitioners and the House of Commons Health Committee therefore recognise the urgent need for evidence-based education in end of life care for GPs. However, the evidence base for GP training in end of life care is unclear, and no rigorous evaluations … Read more

Are some patients more equal than others? Looking back at the Cancer Drugs Fund

Padraig Dixonby Dr Padraig Dixon
Senior Research Associate
Centre for Academic Primary Care

Imagine being given £400m of taxpayers’ money to spend on drugs for the benefit of NHS cancer patients. How would you decide which therapies to fund? Would you decide that all cancer patients should benefit equally, or would you decide to spend more on particular types of cancer, or on particular types of patient?

These issues were confronted by the Cancer Drugs Fund (CDF), the 2014/15 expenditures of which were £416m (against a budget of £280m). The CDF was created to make available to patients in England cancer drugs not recommended by the National Institute of Health and Care Excellence (NICE) on the basis of cost-effectiveness, not yet appraised by NICE or which were being used outside market authorisations.

The effects of the CDF on population health are controversial: one estimate is that the CDF has caused five … Read more

Dying in the UK? Lucky you.

Lesley Wye photoBy Lesley Wye
Senior Research Fellow
Centre for Academic Primary Care

My father is dying. This is pretty bad. What’s worse is that he’s dying in the US.

The Economist Intelligence Unit recently published a report that ranked the UK as the best place to die in the world, with the US ranking 9th, and I’m inclined to agree.

With advanced prostate cancer, a tumour in his liver 14 cm long, another pushing in his bladder and a recent bout of pneumonia, we’ve been told that my father has “weeks” to live.

He’s currently in a ‘skilled nursing facility’ on the premises of a retirement community. Medicare, a US federal government programme, is paying for his care, but only while he continues to have physiotherapy twice a day. It’s rather heart-breaking watching my father struggle to stand for more than 30 seconds and then collapse exhausted in his bed. But … Read more