End of life care (EOLC) for brain tumour patients

“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.”

On this page you will find:

When brain tumour treatment options run out

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. Decisions are complex enough without the added difficulty of highly charged emotions that may differ between family members, so it does help to have some guiding principles. If these can be discussed and agreed well in advance it enables the family, which includes the brain tumour patient and the carer, to be proactive and to be more in control, rather than reactive.

We think there are three guiding principles, which should help make any decision making easier, but not easy:

  • The first would be to plan as much as you can in advance so that the patient’s wishes are clearly stated and can be followed
  • The second is to pursue the most aggressive treatments, but if there comes a point where these treatments are causing more harm, or are not extending the life or quality of life, then they should be withdrawn. But the care continues.
  • Be firm. Know what you need in the way of support and ask; no, demand it. And if you don’t know what you need, talk to your GP. Tell them what you are struggling with. This will help you work out what the priorities are.

So ‘to dos’:

With the individual’s agreement make sure that any discussions are:

  • documented
  • regularly reviewed
  • communicated to key people, including healthcare practitioners, family and friends.

These discussions should include any concerns, important values and goals, and to establish an understanding about the illness and prognosis, as well as particular preferences for the types of care or treatment.

A statement of wishes and preferences can be prepared, which summarises these areas. In addition, an advance decision can be completed which relates to refusal of specific medical treatment and can specify circumstances such as whether the patient would want to be resuscitated or not. This is also known as a Living Will. More information about Living Wills can be found here.

This all sounds a bit formal. There’s a big gap between what people say they want and what actually happens, so this is a very good reason to start to talk about what the patient wants. How do you begin the conversation? How about ‘When it comes to the end of life, I want mine to be . . .’. There is an excellent website called The Conversation Project, which is dedicated to helping people talk about their wishes for end-of-life care.

It has a fabulous toolkit which you can download. The Conversation Starter Guide will help you organise your thoughts so you can then have the conversation. And it isn’t a conversation about filling out Advance Directives or other medical forms. It’s about talking to your loved ones about what you or they want for end-of-life care. And it isn’t necessarily one conversation; it can be the first of many.

One of the areas to talk about is where the preferred place is of the patient to die – in hospital, in a hospice or at home. Some people have a very clear idea about where they want to be. If not then all of these options need to be explored as possibilities when having the end of life planning discussions. If the former two, then a lot of these questions / concerns / what to expect should be explained to a daily basis by the staff involved. Most hospices won’t ‘admit’ a patient who has an estimated survival of more than a week or so due to pressure of the beds etc. You can still access hospices and day centres for respite and advice with some offering great counseling / supportive information. If the patient wants to die at home then this needs to be stated early on as you will need to discuss this with the GP who will arrange all the home care, medication, death certificates etc. It also means at the time of death, only the GP needs to be involved – no police or ambulance required. The GP then certifies the patient and contacts the funeral director to remove the body when the family is ready.

And of course – use your clinical nurse specialist for support. They know what to look out for and what to expect, and ultimately they should know the family and patients the best.

What are the likely side effects of treatments?

If the treatments are not going to prolong life and are going to have a negative impact on quality of life or add significant risk and complication to an already compromised state of health, then these factors need to be considered as part of the decision making process. Only your consultant will know what the likely side effects are going to be, depending on the treatment and current state of health. Talk, ask, and talk and ask some more.

brainstrust is here to help you get the most out of your team. Find out more about working with your team here.

What are the options for stopping treatment?

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. Equally doctors can override the order if the resuscitation is needed for an unrelated cause, or if they think it is within the patient’s best interest. The same with a Living Will, which specifies what kinds of states a person doesn’t want to live with. You can change your mind about treatments or refusal of treatment. In Living With A Brain Tumour, Peter Black says:

‘There is no way to predict with certainty how a person’s disease will progress or how he or she will feel about further treatment at any given point. Sometimes a patient who has lived with a tumour that has been considered inoperable may begin to have more and more problems because of it. At that point, it’s not too late to consider surgery as an option in order to stabilize the person enough so that he or she can have a better quality of life.’

He goes on to explore options in supportive care:

  • Choosing not to treat with antibiotics. People with fragile health are more susceptible to infections such as pneumonia or a urinary tract infection. Choosing not to take antibiotics means that the patient is likely to succumb to infection.
  • Choosing not to resuscitate. If the patient has a cardiac arrest then the medical team would not attempt to restore the heartbeat.
  • Choosing to withdraw a breathing tube or feeding tube. If a patient is dependent on a ventilator or a feeding tube then withdrawing this support will hasten death.
  • Choosing to give increasing doses of morphine. Morphine is used to treat pain, but it also slows the patient’s breathing.

What do I want to do?

This is the most important question. Of course we are frightened of dying. Or are we? Isn’t it more how we might die that frightens us the most? By ‘looking the tiger in the eye’ we can have more control over how we die. There was a time when it was left to the medical practitioners; not any more.

There are two ways in which you can ensure that you have control over how you die. One is to have an advance directive or living will. The second is to appoint someone who will be your spokesperson – a healthcare proxy – who can speak for you about important decisions. This will also relieve the family of having to make key decisions, which may well cause dissent amongst loved ones at a time when they should be supporting each other.

Click here for the NHS Advance Decision to Refuse Treatment form

Where can I get the practical and emotional support, which will see me through the next stage?

You can ask for help at any point you feel out of your depth, you feel overwhelmed or upset. These would be the kind of ‘asks’ that you might think about:

  • If the patient is in pain and is not responding to prescribed pain relief, or if you are unable to provide medication;
  • If there are any signs of discomfort, such as fidgeting, grimacing, moaning;
  • There is difficulty with breathing and the patient is upset;
  • The patient is unable to urinate or defecate;
  • The patient has fallen;
  • The patient is very depressed or talking about committing suicide.

Your GP and practice nurse should be your first port of call. They will be able to unlock key resources for you such as Marie Curie nurses. You might also find it supportive to involve a spiritual leader if you have strong religious beliefs.

One of brainstrust’s guiding principles is to be truthful. Before you explore the next section you need to know that there may be things in here that will be upsetting. We believe in looking the tiger in the eye so that you know what you are up against. This can help to alleviate some fears.

At brainstrust, these are the areas that we are asked about the most. You may want to know about them too, but do not want to ask, or know who to ask.

Brain tumour support is driven by your support. We know. Click here to help us do even more for people living with a brain tumour in your area.

What is the natural progression of brain cancer, so that I know what to expect?

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

The natural progression is that the patient will spend more and more time in bed, will become withdrawn and sleep more, so the patient slips into a coma. Hearing is the last sense to go, so keep talking gently to the patient as much as you can, whilst you hold their hand. In the last stage of disease, brain tumour patients can present severe symptoms due to the growing tumour or to treatment side-effects, which require adequate palliative management and supportive therapy.

Not every brain tumour patient will experience every symptom, nor does the presence of the symptoms mean that the patient is near to death. If you have any concerns discuss them with your clinical nurse specialist first. This person will know your context better than your GP.

The most frequent symptoms observed in the last four weeks of life are:

  • Drowsiness/increased sleep 85%
  • Dysphagia (difficulty swallowing) 85%
  • Headache 36%
  • Epilepsy 30%
  • Agitation and delirium 15%.
  • Agonal breathing 12%

Other signs that could suggest that the disease is progressing towards include prolonged confusion, visual hallucinations, withdrawal from socialising, loss of appetite, slowing down of bladder function, a cooling of the skin, loss of vision (the patient will turn towards a light source), increased pain and involuntary movements.

Agonal breathing (used to be called Cheyne Stokes respiration, and often misspelt ‘chain stoking’)

Agonal breathing is common in the terminal phase of life. This is a pattern of breathing typical of dying patients. Breathing becomes rapid and shallow, then the diaphragm flutters and stops. The patient doesn’t take another breath then they gasp suddenly and breathe very rapidly for a few seconds until their breathing returns to a shallow rapid pace again. It can go on for days.

What can I do to help?

You do not need to be alone for this phase. Consider having someone there to help you. This person can provide you with comfort, support and make sure you are OK. If you are at home you should ensure that the GP is informed so they can assess whether pain relief is needed.

  • Talk calmly and quietly to the patient. Let them know you are there.
  • Keep the patient warm with blankets.
  • Leave soft lighting on.
  • Keep the bed clean. A catheter and management of a catheter will be provided.
  • Ice chips are excellent for keeping the mouth moist. Lip balm and swabs are also useful to freshen the mouth.

Types of symptoms include:

Symptoms Treatment
Raised intracranial pressure Steroids (dexamethasone). These help to reduce brain swelling but cannot be used for prolonged periods because of known side effects.
Seizures Anticonvulsants.
Nausea and vomiting Antiemetics
Headache Analgesics – (includes opiates in the terminal phase)
Anxiety or depression Antidepressants. These take time to work.

How will I know when the patient has died?

Instinct will tell you. You will probably have heard the patient breathing awkwardly (agonal breathing see above). This will have stopped as the patient is no longer breathing and there is no pulse. The eyelids may be slightly open and the eyes do not move or blink. The jaw will have relaxed so the mouth will be slightly open. The body has relaxed, so there will be a final bladder and bowel movement. They also become very pale, clammy and have purple lips. The skin may also become ‘blotchy’ as the circulation stops. This is normal. Rigor Mortis (stiff body) does not happen until a few hours later and does not last forever – normally only a few hours. Some family members like to be involved in the last washing as a final act of caring and goodbye. You might like to think about keeping a lock of hair or making a handprint (cast) if small children are involved to help them with grieving and memories. The patient is unresponsive. There is nothing to act for now. Take a deep breath and have some quiet moments of calm. Your loved one is at peace. There is no rush to act now.

A note about brain death. Brain death is death. When this happens there is no need to make any more decisions about withdrawal of treatment. The patient has already died. There are certain criteria, which have to be fulfilled before a patient is declared brain dead. These include lack of brain stem responses, lack of breathing, eye movements and some reflexes.

Sources used in writing this page

National Council for Palliative Care

www.endoflifecareforadults.nhs.uk

Liverpool Care Pathway

Clinical Nurse Specialist

Black, P. Living With a Brian Tumour (2006) Henry Holt

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 diagnosis 1
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