Teaching notes

Hope and Hopelessness

Notes from a session run by Dr Jane Cowap, Consultant in Palliative Medicine at Ealing and Hounslow Specialist Palliative Care Service, on Hopelessness for Chaplaincy Volunteers.

A Definition

[1] A Definition
[2] Losses & Burdens
[3] Depression & Hopelessness
[4] Hopelessness & Losing the Will to Live
[5] Two Kinds of Hope
[6] Fostering Hope
[7] Our Task
[8] Links

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
dignity, e.g.: with bodily functions position in society being called by one's first name rather than by a title of authority or respect independence, e.g.: ability care for oneself ability to walk, to travel freedom to visit friends, attend social events, worshop, etc. a sense of identity or self-hood, e.g.: a place, position and role in society pleasures of life relationships - friends, family view of life and God, of what it's all about; loss of faith	loneliness pain living a "constrained" life futility time/boredom needing to be looked after - being a burden on others sadness/depression frustration anxiety over what may happen trying to be cheerful for others unresolved conflicts - and trying to resolve them hospitalisation guilt

Examples of losses

Examples of burdens

dignity, e.g.:
- with bodily functions
- position in society
- being called by one's first name rather than by a title of authority or respect
independence, e.g.:
- ability care for oneself
- ability to walk, to travel
- freedom to visit friends, attend social events, worshop, etc.
a sense of identity or self-hood, e.g.:
- a place, position and role in society
- pleasures of life
- relationships - friends, family
view of life and God, of what it's all about; loss of faith

loneliness
pain
living a "constrained" life
futility
time/boredom
needing to be looked after - being a burden on others
sadness/depression
frustration
anxiety over what may happen
trying to be cheerful for others
unresolved conflicts - and trying to resolve them
hospitalisation
guilt

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:
interpersonal connections: being part of a community having things in common with others attainable aims (however small): You might ask, What would be helpful to you? or What would get you through? a spiritual base: connection to something transcendent, e.g. God, Allah, the Universe, Spirit, etc. having a sense of meaning recognising contributions made to life or the community (thus it is good to link people back to their achievements) personal attributes, e.g. a cheerful disposition light-heartedness memories: I am more than just this time, this illness. Look at life before the illness; see the bigger picture of life: contributions made important relationships war experiences ... affirmation of worth	feelings of being abandoned or isolated uncontrolled symptoms the devaluation of personhood or the loss of the sense of being a whole person, i.e. loss of integrity

Hope may be fostered by:

Hope may be hindered by:

interpersonal connections:
- being part of a community
- having things in common with others
attainable aims (however small):
You might ask,
- What would be helpful to you? or
- What would get you through?
a spiritual base:
- connection to something transcendent, e.g. God, Allah, the Universe, Spirit, etc.
- having a sense of meaning
- recognising contributions made to life or the community (thus it is good to link people back to their achievements)
personal attributes, e.g. a cheerful disposition
light-heartedness
memories:
I am more than just this time, this illness.
Look at life before the illness; see the bigger picture of life:
- contributions made
- important relationships
- war experiences
- ...
affirmation of worth

feelings of being abandoned or isolated
uncontrolled symptoms
the devaluation of personhood or the loss of the sense of being a whole person, i.e. loss of integrity

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.