End-of-life care for people with a brain tumour

“It is difficult to exaggerate the importance of good end-of-life care. After all, we only ever have one chance to get it right.”

Death is the one sure certainty for us all, yet we rarely discuss end-of-life care and what our final wishes would be. Having all the relevant information allows you to begin the conversation, make sure any requests are in place and ensure that you feel in control.

This resource has been produced with people who have the lived experience of what it is like to care for someone with a brain tumour at end-of-life, with leading consultants in palliative care and clinical nurse specialists who are hospice-based.

It covers all aspects of what dying with a brain tumour entails. This resource provides information on good end-of-life care, how to achieve it, who can help you and how to ensure that you are being informed and making the right decisions that are personal to you. It will take you through options for stopping treatment through to looking at making decisions for where the patient wants to die. Having as much information to hand as possible allows you to be in control, certain that you are making the right decisions for those concerned.

On this page you will find:

The brainstrust end-of-life care resource

With our EOLC resource you can/will:

  • have independent, factual information available on EOLC when living with a brain tumour for patients, caregivers and stakeholders
  • have the information you need so that you can make informed decisions about EOLC and how to manage it
  • understand what happens in EOLC quickly and easily, with evidence supporting the information
  • can build trust in clinical judgement and in stakeholder decisions
  • can articulate the challenges around EOLC so that you can be more open in your discussions.

Click here to download the complete EOLC resource.

The resource is split into six downloadable sections, which you can access below. If you would like a hard-copy of the resource, please email hello@brainstrust.org.uk and we will send one out to you.

The difference it makes

“How we die lives on in the memory of those left behind.” Dame Cecily Saunders

You need people to hold you through this, not necessarily to understand it, and this is what this resource is planned to do. With planning, the right conversations at the right time, and with the right support, we believe that you can still have your best possible day, even at end-of-life. This resource and our support will enable this to happen.

Here, our support specialist for Scotland Carol reflects on the difference that talking about death and planning end-of-life care made for her family:

“Death is the great one certainty for us all, yet it’s still such a taboo subject. It’s so important to be having conversations about it as it alleviates the fear. It gives the opportunity to make sure you know the dying person’s wishes are met, but it’s more than that.

When my Dad was diagnosed with a glioblastoma we used it as an opportunity not just to ensure his end-of-life care wishes were met (he wanted to die at home), but to use the time to make precious memories as a family with the time we had left, as we knew time was such a precious commodity.

Knowing we did this helped greatly after Dad died – knowing we had those conversations, nothing was left unsaid, and we had a treasure trove of memories made.”

Key questions answered

Below, you will find answers to questions you might have around end-of-life care. These are brief answers that are covered in far more detail in the End-of-life Care resource – each answer highlights which section to refer to for more information.

At some point in the course of a malignant brain tumour, it is likely that treatment options will run out. Supportive care should become the focus. But this sounds easier than it is.

Some patients prefer to stop treatment and let the disease take its course. This should be respected but is not irreversible if the patient changes their mind. The focus should always be on the goals and priorities of care; this should define the type of treatment and helps with decision-making.

For more information, read Part 2 of the End-of-life Care resource, page 16.

You can ask for help at any point you feel out of your depth, you feel overwhelmed or upset. How to find the support you want and the questions to ask are outlined in Part 3 of the End-of-life Care resource, page 31.

In our experience, which is based here on talking with many carers, the person with brain cancer can remain stable for a while but then deterioration happens very quickly, sometimes over a matter of hours.

For more information on brain cancer progression, read Part 5 of the End-of-life Care resource, page 45.

Instinct will tell you. At the point of death breathing ceases completely, and there is no detectable pulse. Take a deep breath, and have some quiet moments of calm. Your loved one is at peace. There is no rush to act now.

For more information, read Part 5 of the End-of-life Care resource, page 58.

For support in coping with bereavement, click here.

Sources used in writing this page

National Council for Palliative Care

Clinical Nurse Specialist

Caregivers

Consultant in palliative and end of life care

NICE. 2019 End of life care for adults: NICE guideline [NG142]. London: NICE. London: NICE. Available at: https://www.nice.org.uk/ guidance/ng142 [Accessed 10 September 2021].

NICE. 2021 End of life care for adults Quality standard [QS13]. London: NICE. Available at: https://www.nice.org.uk/guidance/qs13 [Accessed 10 September 2021].

NICE. 2021 Brain tumours (primary) and brain metastases in adults: NICE guideline [NG99]. London: NICE Available at: https://www. nice.org.uk/guidance/ng99 [Accessed 10 September 2021].

Did this information make you feel more resourced, more confident or more in control?

Date published: 17-05-2009
Last edited: 28-02-2018
Due for review: 28-02-2021

sidebar brainbox

Introduction

The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

  1. Select the year of diagnosis using the drop down menu.
  2. Select your patient group of interest from the four drop down menus in the following order:
    1. Tumour group
    2. Age at diagnosis
    3. Region of England
    4. Gender of patient
  3. To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

  1. How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

  1. Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

  1. Data is not yet available for the selected year from Public Health England.
  2. Data is not available because the data quality is too poor to release this statistic.
  3. Data is not available as the statistic is not appropriate for this group.
  4. Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.

This project provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here: http://cancerdata.nhs.uk/standardoutput

Incidence

The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.

Malignant

Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites

Mortality

The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.

Non-malignant

Not cancerousNon-malignant tumours may grow larger but do not spread to other parts of the body.

Survival

The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

  1. Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

  1. GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

  1. Emergency Presentation

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.

  1. Outpatient

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

  1. Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

  1. Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

  1. Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.

 

More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

Cancer Research UK’s Cancer Statistics Explained

http://www.cancerresearchuk.org/health-professional/cancer-statistics/cancer-stats-explained/statistics-terminology-explained#heading-Seven

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here:

https://www.brainstrust.org.uk/advice-glossary.php