4 October 2011
Ultimately, hope is an act of the imagination. We are forever moving from a past, into a present and towards an imagined future. We have always done this. Serious illness does not suddenly bring the sense of hope into focus.
In an illness where there is despair or depression or a stripping away of all sense of dignity it may seem so, but hope won’t go away. It lies within us – and so herein lies the challenge for all of us as patients, carers and clinicians – how do we imagine the future?
From cure to comfort
Serious illness cuts through the present like a knife. It also slices into the imagined future. This future is so different from the past that it is almost unrecognisable. Investigations, appointments, treatments, the long waiting for change, for some good news. For some it involves the slow calibration of hope from cure to comfort, from victory to a negotiated truce on its terms – always on its terms.
Hope is a form of homesickness – for the past, a country where you were, if not happy, then you were, at least, healthy. You travel like Ulysses away from your home through the most difficult waters. Reports come back to you of what it was like to be well, you look to a better future when you will return home, you dream of release, of pain endured and pain relieved, you hope.
Hope is the imagined future. Of course it is more than simply passive imagination. Here there is content to that imagined future. There is yearning associated with hope.
This may be expressed as: ‘I hope to return to my former life. I hope I shall be cured.’
But can it be expressed in another way? Are we all looking at hope on too narrow a plane? Is that plane so tight that patients suffocate when what they hope for and what is so evidently happening clash and overwhelm them so that their narrow definition of hope collapses and they think themselves now hopeless? Read more …
For therein lies a true danger – that the patient has invested all on preserving hope on the narrow plane of cure and the moment this is evidently not possible, all hope dies.
They may well feel they have left one country – the land of hope – and entered another – that of hopelessness – and this country is an altogether different place.
This is a critical time and much of palliative care is devoted to exploring with the patient and the family the borderline between these countries – the border, if you like, between the realistic and the wishful.
Starting with truth
What to say when faced with serious, progressive disease? It may start with a simple acknowledgment of the truth, a slow resetting of the focus of care. It may broaden the plane of hope to something that is at once obvious, but also, if never said before, a revelation.
At this point what we say and how we say it may extend the vision of hope. In simple terms we may say to the patient words to the effect:
Let us look at things clearly. Despite all that we have done together, despite your greatest efforts we have come to a point where there is no hope for cure. We know this. But there is hope
• that you will be comfortable and supported throughout;
• that you will not be abandoned;
• that you will always be listened to;
• that all your symptoms will be treated to the best of our ability;
• that you will not needlessly suffer, and
• that you will be treated with respect and dignity at all times.
Therein lies hope – hope redefined may be hope reaffirmed.
‘Towards a homecoming, towards a journey’s end’ from A Short Talk on Hope. Illness, Crisis and Loss 2010; 18(3):259-261.
Frank Brennan is a palliative care physician at Calvary Hospital, Sydney, Australia.
All things are full of God – a dying mother’s son’s view of life