Talking about death - end of life care guidance for the psychological workforce, BPS

The way we communicate as staff is affected by cultural taboos and also by our own beliefs and experiences, and our personal beliefs and values can affect our clinical decisions and willingness to talk about death.

This document lays out some useful guidance to help managers and supervisors support staff and colleagues who are caring for patients who are dying.
Click here to read document

Palliative and end of life care profiles: February 2020 data update

The profiles provide an overview of palliative and end of life care in England at various geographies. Click here for government statistics

Study examines depression in the last year of life

Depression impacts quality of life at all life stages, but little is known about the factors related to depression in the last year of life. A recent study found that 59.3% of individuals had depression in the last month before death. Read ScienceDaily article here

Palliative and end of life care

Information and resources for health and social care professionals to improve the quality of services and reduce inequalities in care. Click here to government resources

New NICE guideline [NG99] Brain tumours (primary) and brain metastases in adults

New NICE guideline [NG99] Brain tumours (primary) and brain metastases in adults


Published date: July 2018    


This guideline covers diagnosing, monitoring and managing any type of primary brain tumour or brain metastases in people aged 16 or over. It aims to improve diagnosis and care, including standardising the care people have, how information and support are provided, and palliative care.


For full guidance
https://www.nice.org.uk/guidance/ng99           

Oesophago-gastric cancer: assessment and management in adults [NG 83]

New:  NICE guideline

1.1 Information and support

1.2 Organisation of services

1.3 Assessment after diagnosis

1.4 Radical treatment

1.5 Palliative management

1.6 Nutritional support

1.7 Follow-up

End of Life Care Profiles: December 2017 update

The End of Life Care Profiles data update for December 2017 has been published by Public Health England (PHE). The profiles are designed to improve the availability and accessibility of information around end of life care. The data are presented in an interactive tool that allow users to view and analyse them in a user-friendly format. Click here for link to DoH

Commissioning children's palliative care in England: 2017 edition

This report from Together for Short Lives highlights that only a third of CCGs in England are implementing a government commitment to the prioritisation of palliative care for babies, children and young people.

OC28 Home Parenteral Nutrition (HPN) In Palliative Oncology Patients: A UK Single Centre Case Series

Abstracts / Clinical Nutrition ESPEN 22 (2017) 116e147

Malnourishment is common in cancer patients. Resultant sarcopenia, seen alongside advanced disease, leads to increased rates of perioperative complications, increased rates of infection and decreased tolerance of anti-cancer treatment. A subset of these patients are unable to maintain enteral
nutrition, for instance those with bowel obstruction, and improving nutrition in this group is an area of expanding interest. Since the establishment of home parenteral nutrition (HPN), its use in cancer patients in the UK has increased annually (British Artificial Nutrition Survey 2015). Despite this, literature in this area remains sparse and randomised controlled trials are understandably non-existent. This paper aims to review current practice with HPN in patients with non-curable cancer at a
large teaching hospital in the UK to assess outcomes and suggest areas for future research.

UHCW Research: H. Bridgestock, C. Bell, R. Whitefield, S. Sothi, N. Burch.

Enzalutamide (Xtandi) for non-metastatic prostate cancer

Enzalutamide (Xtandi) is a drug which blocks the effect of the hormone testosterone on the prostate and so slows down the growth of the cancer. Enzalutamide is taken as four capsules once a day. If licenced in the UK, it could provide an additional treatment option for patients with non-metastatic prostate cancer


From the NIHR Innovation Observatory

Pomalidomide (Imnovid) with bortezomib and dexamethasone for relapsed or refractory multiple myeloma‐ second line and beyond

Pomalidomide with dexamethasone is currently approved for use in the UK to treat adult patients with relapsed and refractory multiple myeloma who have received at least two prior treatment regimens, including both lenalidomide and bortezomib, and have demonstrated disease progression on the last therapy. If approved, the combination of pomalidomide with bortezomib and dexamethasone will offer a treatment option for patients who have been previously exposed to lenalidomide (including refractory to lenalidomide) ‐ a type of patients for which the outcomes with other novel regimens are uncertain.


From the NIHR Innovation Observatory

A4250 for progressive familial intrahepatic cholestasis

Progressive familial intrahepatic cholestasis (PFIC) is a rare, inherited condition that usually begins in infancy. The condition affects the liver, hindering or stopping the flow of bile from the liver. Bile flow is needed for fats, nutrients and vitamins to be absorbed into the body, and also to help the body get rid of toxins. Problems absorbing fats and nutrients can lead to poor weight gain and slower growth, and excess toxins in the body can lead to jaundice and itching, which can have a large impact on the quality of life of the patient and their family. There is no cure for this condition, and current treatments can only reduce the symptoms and slow down damage to the liver. It is not known how many people have this condition, but around 35 genetic tests are carried out each year for this condition.
The drug A4250 works in a new way that directly targets the part of the gut that allows bile to flow into the liver. By stopping bile from coming into the liver, bile levels are reduced, slowing down damage to the liver and reducing the symptoms of jaundice and itching. Because the drug acts directly on the gut, it has the potential to reduce the side-effects that occur with current medicines, such as problems with vitamin absorption. The drug is taken by mouth as a capsule.


From the NIHR Innovation Observatory

Pembrolizumab (KEYTRUDA®) for advanced, metastatic oesophageal cancer – second line

The most common treatment options for oesophageal cancer in the UK is surgery; alternative treatments are radiotherapy and chemotherapy. Pembrolizumab is a type of immunotherapy, which works targeting specific proteins that stimulates an immune response that targets the cancer cells. It increases the body’s natural ability to identify and attack cancer cells. If licenced, pembrolizumab will offer an additional treatment option for patients with oesophageal cancer and prolong the time without cancer progression.


From the NIHR Innovation Observatory

Belinostat (Beleodaq) with CHOP for treatment of patients with peripheral T‐cell lymphoma, 1st line

Peripheral T-cell lymphoma (PTCL) is a rare form of lymphoma, a cancer affecting a type of white blood cell called a lymphocyte. At the beginning, the symptoms of lymphoma can be very varied and difficult to diagnose, but as the lymph nodes get bigger, a painless swelling in the neck, armpit or groin is sometimes noticed. The condition generally affects people aged over 60 years of age and it is slightly, more common in men than in women. By the time they are diagnosed, the lymphoma has often spread widely around the body. The main treatment is chemotherapy, but not all patients are well enough to manage this and the disease often returns after treatment.
Belinostat is a new drug under development for the treatment of peripheral T-cell lymphoma. The safety and efficacy of belinostat is currently being evaluated for use in combination with traditional front-line chemotherapies for the treatment of PTCL. Belinostat is given as a single injection in a dosing regimen that involves a 21-day cycle.


From the NIHR Innovation Observatory

Ublituximab (TG-1101) in combination with umbralisib (TGR-1202) for chronic lymphocytic leukaemia

Ublituximab in combination with umbralisib is under development for the treatment of chronic lymphocytic leukaemia and other types of blood cancers. They both act in different ways to suppress the production and growth of the abnormal lymphocytes caused by bindings to certain cells and proteins in the body that produces the cancer. If licensed, it will offer an additional treatment option for patients with chronic lymphocytic leukaemia.


from the NIHR Innovation Observatory

Listeria monocytogenes vaccine for unresectable malignant plural mesothelioma

Malignant pleural mesothelioma is a type of cancer of the lungs caused mostly by exposure to asbestos. When asbestos fibres are inhaled, they can cause tumours to grow in the pleura, the thin membrane of cells (mesothelium) that line the lungs and chest wall. The disease is five times more common in men than women, and occurs between the ages of 60 and 79 years because there is typically a time lag of decades between asbestos exposure and when the disease occurs. It is often diagnosed at an advanced stage and the prognosis is usually poor. People with malignant pleural mesothelioma often have symptoms and respiratory problems such as breathlessness, cough, and fluid on the lungs, as well as chest pain. As the disease progresses, more general symptoms such as tiredness, excessive sweating, weight loss, loss of appetite and difficulty in swallowing become common.
Listeria monocytogenes vaccine is under development for patients who have progressive disease, have had previous chemotherapy and for whom surgery is unsuitable. In current treatment pathways the aim is often symptom management rather than tumour removal, so this drug represents a novel treatment approach for patients who are unsuitable for surgery. The drug aims to help to improve symptoms and has the potential to be well-tolerated by many patients.

Daratumumab (Darzalex) with lenalidomide and dexamethasone for multiple myeloma – first line

Daratumumab is a new drug for the treatment of multiple myeloma (Kahler disease). The drug acts by targeting some specific cells that destroys the cancer cells and also improve the body’s natural immune response. The safety and efficacy of daratumumab is currently being evaluated for use in combination with lenalidomide and dexamethasone in patients with newly diagnosed multiple myeloma (a blood cancer of plasma cells) who are not candidates for high dose chemotherapy and autologous stem cell transplant


From the NIHR Innovation Observatory

Commissioning for Quality and Innovation: Enhanced supportive care data tool

This updated version of the tool, from NHS England, should be used to collect baseline data and return data relevant to each quarter's payment trigger within the Enhanced supportive care (for advanced cancer patients) commissioning for quality and innovation national goal.

Perinatal Pathway For Babies With Palliative Care Needs

This pathway is designed to support all professionals working in fetal medicine, anetental, neonatal and maternity services to deliver sensitive and timely support, enabling families to spend time with their baby in a more home-like environment, and with as little technologically dependent care as possible.

Palliative care clinical data set: evaluation report

This Evaluation report presents the story of pilot work to collect data about outcomes achieved for individuals by specialist palliative care services. It contains the lessons learned within the project and makes recommendations for the future.

The Evaluation report should be useful to policy makers, commissioners and providers in particular, to inform and guide future activity and should be read alongside the Palliative care clinical data set, Palliative care clinical data set Guidance and definitions report.

See also Palliative care clinical data set Guidance and definitions.