Grief and bereavement

Death is nothing at all
I have only slipped away into the next room
I am I and you are you
Whatever we were to each other
That we are still.

Canon Henry Scott Holland, Death is Nothing at All

The concept of death

To love someone inevitably holds you hostage to fortune, because bereavement is a universal and integral part of our experience of love. If you commit yourself to love then unavoidably you are also committing yourself to pain. The alternative is to never to love and that is to shrink from the test of being human at all.

When we lose someone we love we have lost intangibles, childhood, innocence, unconditional love, our insurance against mortality. We are thrown into chaos and loss. We need to remind ourselves that ‘sorrow is not a state but a process. It needs not a map, but a history’ (A Grief Observed, Lewis, 1961).

Click here to access our ‘coping with bereavement’ know how, where we explore what we mean by grief, and some strategies to help you cope.

Brain tumour bereavement guide: the process of going through changeThe Sigmoid curve identifies the emotions that we experience in change and helps us to understand our feelings. We can almost to forecast what we will be feeling next, but no time scale can ever be applied. C.S. Lewis comments on the laziness of grief, ‘that initial lethargy where everyday routines, even the uncerebral, become mountainous obstacles’. He continues, ‘there is a sort of invisible blanket between the world and me. I find it hard to take in what any one says.’

Everyone has his/her own unique concept of death. Past experiences with death, as well as one’s age, emotional development, and surroundings, influence our own concept of death. Movies, television, and books are filled with images of death. Treating death as a part of life is difficult, but may help alleviate some of the fear and confusion associated with it. Dealing with death must be done within your own beliefs and those around you.

What to do, what to say

Sometimes silence is good. Don’t feel a need to fill every moment with sound. Touch can say just as much as words, sometimes more. Simple actions such as making a cup of tea, leaving a bunch of flowers take on a new significance and can speak volumes. Whether you have been bereaved or are with someone who is losing his or her soul mate, or child, or friend, then there are things you can do to ease the pain. You cannot make it go away. This would deny us from being human.

Start the conversation

Don’t be afraid to talk about dying. If the other person doesn’t want to talk about it they will let you know. Ask a question as an opener. Don’t be afraid to use the words death and dying. A good opener might be ‘I’ve been wondering about you since <<>> died. Would it help to talk? Or ‘I am wondering if you are frightened of dying’.

Clear up misunderstandings

Questions are good here, because it helps you understand a little more about how much the person knows about the situation. The answers may also surprise you and take you down a road, which you hadn’t considered. Don’t expect things to be cleared up in one conversation. It may take several, smaller moments – just make sure that the person knows it is OK to chat, whenever.

Listen for clues

Take your cues from the person and give only as much information as they seem to be able to take in or want to know. Everyone needs time to let things sink in – less is more. If they want additional explanations, they will usually ask questions about things they are wondering about. Children should be allowed to determine the pace of information that they receive. They will often set this pace without any prompting from you. They might ask questions that seem to come out of the blue, and then abruptly shift their attention back to a something else, such as playing. This may seem like the child doesn’t understand how serious things are, however the child is pacing the amount of information, and taking the time needed to think about it. Reassure the child that you will give them regular updates as to what is happening and how the ill person is doing. Let them know that they can come to you (or another trusted adult) at any time with questions or to share how they are feeling.

Adapted from www.virtualhopsice.ca

brainstrust can provide counselling to help you. Click here for more

How children and teenagers view death

Infant

For an infant, death has no real concept. Infants do, however, react to separation from parent(s), painful procedures, and any alteration in their routine. An infant that is terminally ill will require as much care, physically and emotionally, to maintain a comfortable environment as any age group. Maintaining a consistent routine is important for the infant and his/her caregivers. Because infants cannot verbally communicate their needs, fear is often expressed by crying.

Toddler

For the toddler, death has very little meaning. They may receive the most anxiety from the emotions of those around them. When a toddler’s parents and loved ones are sad, depressed, scared, or angry, they sense these emotions and become upset or afraid. The terms “death” or “forever” or “permanent” may not have real value to children of this age group. Even with previous experiences with death, the child may not understand the relationship between life and death.

Preschool

Preschool-aged children may begin to understand that death is something feared by adults. This age group may view death as temporary or reversible, as in cartoons. Death is often explained to this age group as “went to heaven.” Most children in this age group do not understand that death is permanent, that everyone and every living thing will eventually die, and that dead things do not eat, sleep, or breathe. Death should not be explained as “sleep” to prevent the possible development of a sleep disorder.

Their experience with death is influenced by those around them. They may ask questions about “why?” and “how?” death occurs. The pre-school child may feel that his/her thoughts or actions have caused the death and/or sadness of those around. The pre-school child may have feelings of guilt and shame.

When a child in this age group becomes seriously ill, they may believe it is their punishment for something they did or thought about. They do not understand how their parents could not have protected them from this illness. This idea may make the preschool-age sibling of a dying child to feel as if they are the cause of the illness and death. Young siblings of dying children need reassurance and comforting during this time period, as well.

School-age Child

School-aged children are developing a more realistic understanding of death. Although death may be personified as an angel, skeleton, or ghost, this age group is beginning to understand death as permanent, universal, and inevitable. They may be very curious about the physical process of death and what happens after a person dies. They may fear their own death because of uncertainty of what happens to them after they die. Fear of the unknown, loss of control, and separation from family and friends can be the school-aged child’s main sources of anxiety and fear related to death.

Adolescent

As with people of all ages, past experiences and emotional development greatly influence an adolescent’s concept of death. Most adolescents understand the concept that death is permanent, universal, and inevitable. They may or may not have had past experiences with death of a family member, friend, or pet.

Most adolescents are beginning to establish their identity, independence, and relationship to peer groups. A predominant theme in adolescence is feelings of immortality or being exempt from death. Their realization of their own death threatens all of these objectives. Denial and defiant attitudes may suddenly change the personality of a teenager facing death. An adolescent may feel as if they no longer belong or fit in with their peers. In addition, they may feel as if they are unable to communicate with their parents.

Another important concept among adolescents is self-image. A terminal illness and/or the effects of treatment may cause many physical changes that they must endure. The adolescent may feel alone in their struggle, scared, and angry. Adolescents, similar to adults, may want to have their religious or cultural rituals observed. It is important for parents to realise that children of all ages respond to death in a unique way. Children need support and, in particular, someone who will listen to their thoughts, and provide reassurance to alleviate their fears.

How adults deal with death

Grief is a natural human response to the loss of a loved one. It can manifest itself in many ways. Grief moves in and out of stages from disbelief and denial, to anger and guilt, to finding a source of comfort, to eventually adjusting to the loss.

It is normal for both the dying person and the survivors to experience grief. For survivors, the grieving process can take many years and many forms. The challenge of accepting death and dying as the end stage of life is what the grieving process is all about.

Adapted from University of Virginia
http://www.healthsystem.virginia.edu

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

This information is currently being reviewed as of Feb-2022

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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 cancerous. Non-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