A Definition
Hope is the ability to see a positive outcome in the future.
Hopelessness is the inability to see a positive outcome in the future.
Losses & Burdens
The trajectory of a serious illness from it's initial diagnosis is not usually linear. There may be cycles of illness, of different lengths of time, with times of being better. At each time of illness there may be associated losses and burdens.
| Examples of losses | Examples of burdens |
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Depression and Hopelessness
It is important to distinguish between sadness, depression and hopelessness. For example:
- someone may feel sad to be dying, but feel ready to die, that it is the right time, and that there is hope for the future, either for themselves or for those they love.
- It is possible to feel depressed, but still have hope that things can change.
- It may be possible to have no hope, but not be depressed.
Definition of Clinical Depression from DSM-IV
To diagnose clinical depression, these two elements must be present:
- low mood for more than two weeks;
- loss of interest in normal things;
in conjunction with at least five of the following:
- unintentional changes in weight;
- sleep pattern interrupted - sleeping much more or less that usual;
- tiredness and lack of energy;
- low self-esteem/worthlessness;
- guilt;
- poor concentration;
- recurrent thoughts of death or suicide.
This diagnosis will be in the absence of any better explanation, e.g. bereavement.
If someone is depressed and without hope, the chance of suicide is very great.
Hopelessness & Losing the Will to Live
Loss of the will to live can be experienced in all 'domains' of care:
- Pain and Physical Symptom Control: N.B. breathlessness can be particularly bad in reducing the will to leave, worse even than pain
- Psychiatric: e.g. anxiety and depression
- Psychosocial: e.g. feeling a burden to others
- Existential: e.g. loss of dignity, no longer feeling a person
- Spiritual: e.g. loss of hope
Harvey M Chochinov,
who conducts research into the psychiatric aspects of terminal care,
suggests that the will to live correlates with a
reduction of symptoms.
He says, No one wants to be viewed merely as the embodiment of a disease.
As a visitor it may be important to focus on the person, who is not the embodiment of her disease. For example,
rather than ask How are you today?
(I'm seeing your disease),
perhaps say, Hello. It's nice to see you today.
(I'm seeing you as a person.)
Two Kinds of Hope
1. An overarching or global hope, to do with:
- being (rather than 'doing')
- a life lived, which has made a difference to the world
- what's left and will endure - achievements, family, ...
- links to life and a life beyond this one
- a faith or philosophy of life
2. Hopes for specific aims to be achieved:
- these may have to change as the disease progresses
- hopes may have to be "rebranded" or "reframed", i.e. viewed in a different way
People may have lost the hope of a cure, but may retain, or may shift into, the hope of something beyond - a shift from the specific to the global.
Fostering Hope
| Hope may be fostered by: | Hope may be hindered by: |
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Our Task
Our task is to help people to be realistic about what is going to happen, without taking hope away.
While having difficult conversations with (= Breaking Bad News to) people, it is important to:
- stay with the awfulness;
- have a sense of how someone's belief system can be bolstered.
Supporting Ourselves
It is easy to be disabled by another's lack of hope. It can be helpful to think about, or to talk through with someone else, what can help you with this. It is enough simply to listen. It is enough simply to empathise. Sometimes we will make a difference, but this is not the only reason to be with someone.
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