Hope: “Nothing but the Paint on the Face of Existence”
Lord Byron wrote: “But what is Hope? Nothing but the paint on the face of Existence; the least touch of truth rubs it off, and then we see what a hollow-cheeked harlot we have got hold of.”
Not all hope is that grim. Hope is a complex mental process which affects our interpretation of the evidence about ourselves or others. Hope leads us in the direction of some decision. Without hope, there would be no basis to make certain decisions which might change an outcome to our benefit or those of others. But hope has to arise from and be based on evidence-based information to be of value.
False hope, created by misinterpretation of the facts or by receiving information which is without basis in reality, though initially may be supportive to the individual eventually becomes destructive by delaying or preventing the individual to consider all the options still available or the taking of other essential supportive actions.
Though hope is something that can affect our decisions and our feelings about control and accomplishment in various aspects of our lives, hope is an important element in disease and the patient’s management of their disease. Hope plays an important role in most any disease for which treatments are inconsistent in outcome and the consequences are disabling or fatal. Of course, such a disease can be cancer.
Hope, as may be present in a cancer patient, can continue throughout the illness until the patient recognizes that a hoped for cure has become hopeless. Hopelessness may not be accepted by the patient if the patient is awaiting a miracle.
Miracles in the practice of medicine represent clinical responses to hope which are fully unexpected by professional experience or by scientific explanation. When they do occur, they can be explained by scientifically unknown factors in the progression of the disease or occasionally by a misdiagnosis. Unfortunately, waiting for miracles, especially with cancer patients, can lead to making wrong decisions, undergoing unnecessary procedures and treatments, and unnecessarily prolonging the period of suffering before finally accepting hospice management with attention to maintaining palliative comfort care rather than further attempts at a cure.
Recognition of hopelessness at some point must be made for the patient to have the opportunity to finally accept and act on that prognosis both for practical reasons but also to attempt to establish emotional peace.
I would be most interested reading my visitors’ experiences regarding the matter of hope in medical illness, miracles, false hope and hopelessness as experienced by themselves or by family members or friends. ..Maurice.
Graphic: Photograph taken by myself and digitally modified.
posted by Maurice Bernstein, M.D. @ 8:33:00 PM
7 comments
7 Comments:
Physician-ethicist Steven Miles MD, who has written to this blog previously, presented the following extract from his book on the Hippocratic Oath of physicians:Miles SH. The Hippocratic Oath and the Ethics of Medicine, Oxford University Press, 2004 pp 19-20.
"Though Oath only names gods, the titan Prometheus whose name means “forethought,” deserves mention. He is most often remembered for being condemned by Zeus for giving humans the gift of fire and, with it, heat, cooking, smelting, and scores of other inventions. Fire is emblematic of the gift of the spirit of invention, imagination, and foresight that humans apply to their needs. As Aeschylus im agines him, here is what Prometheus claims to have done for humans,
They had eyes but no eyes to see and ears but heard not…. They knew not how to build brick houses to face the sun, nor work in wood. They lived beneath the earth like swarming ants in sunless caves… until it was I that showed to them stars’ risings, …and numbering as well, preeminent of subtle devices, and letter combinations that hold all in memory…. I was the first to yoke beast to be slave to the traces…. and carriages that wander on the sea, the ship sail-winged….
Greatest was this: when one of mankind was sick, there was no defense for him—neither healing food nor drink nor unguent; for lack of drugs they wasted until I showed them blendings of mild simples with which they drive away all kinds of sickness.
The many ways of prophesying I charted….
In one short sentence understand it all: every art of mankind comes from Prometheus.[i]
Prometheus gave humans the inventiveness that drives the art and science of medicine. However, he limited this gift of forethought in a way that has momentous importance to medicine. Aeschylus quotes Prometheus:
I stopped mortals from foreseeing doom.
[Chorus:] What cure did you discover for that sickness?
I sowed in them blind hopes.[ii]
Physicians and patients cannot foresee the time and manner of a person’s death. As death nears, hope for recovery or cure will skew each party’s judgment about the prognosis or the efficacy of the treatment. The physician’s prognostication resembles prophecy but human foresight is no equal of divine prescience.
[i] Aeschylus, Prometheus Bound, 448-507.
[ii] Aeschylus, Prometheus Bound, 250-3."
I'm impressed with the Prometheus comment--it adds an interesting dimension.
I'd like to pose this question: at what point do doctors give up hope too? Do they sometimes often hold on, hoping things will improve for a patient, and does that I canaffect what treatments they recommend?
False hope can prevent acceptance, can cause people to inveest all kinds of energies in treatments that might help but will probably only slightly mitigate their health issues. It becomes expensive in terms of both time and money. But even with many stage 4 cancers, a certain percent of people survive--everyone wants to be in that percentage. (Though once you have extensive bone and brain metastases, well...).
The "I" here, in this comment--beginning to wonder if there is hope for intractable pain, if I should give that up and the dreams that I had and focus on what is rather than what will be. Is that giving in, does that hasten the decline of my health, or does that acceptance allow me to better cope, removing internal conflict? I can accept a lot of pain, a lot of difficulty, a lot of disability, but looking at the possibility of even more and different illness right now, it makes me wonder how realistic I am being, not enough? I look to my future, I see nothing. There used to be multiple possibilities. Now it's a blank.
And yet I do have hope still. People ask how long I will use my scooter, when I will get better. This I can't attempt to answer and won't. For now, what is--is. But I won't discount the possibility of extended remission of pain.
We all tend to believe that positive attitude will cure, but the research indicates that is not so. That's not to say we shouldn't do what we can to mitigate pain and look for social support and have as healthy a psychology as possible--those all help us deal with what we face. But these things are not a cure.
I found your blog through Grand Rounds and am glad I did. I think hope is a complex and important topic. You may be interested in this post from my blog on a conversation I overheard in a waiting room about the "hope pyramid.
http://insicknessinhealth.blogspot.com/2007/10/unexpected-conversation-in-waiting-room.html
I made my way here via Grand Rounds, excellent post by the way. This really spoke to me. I'm battling lung disease and last year Cleveland Clinic told me I had a rare form of Cystic Fibrosis. It hit me so hard because I'm 36. How could I fall through the cracks for so long. I felt so hopeless. I think hope is a state of mind, at this point I have to focus to stay hopeful. I put my hope in God.
thank you...
Sometimes you fight for so long with little hope of emerging victorious. Sometimes it is better to accept the inevitable and then seize each day and enjoy it.
Living life severely compromised, having little dignity and no joy in life is not what I consider being alive.
maria
It is surprising to discover what we can live with. From the outside, serious illness can look frightening and awful and debilitating. But when it's you, somehow you figure out how to get through each day and salvage a measure of grace.
To me, that's hope. Of course we all hope to be cured. But sometimes that isn't possible. Death eventually comes to all of us.
So then you move the goal posts. You hope for a good day. You hope to spend time in the sunshine. You hope to be (relatively) free of pain. You hope for a good death. You hope for the chance, at the end, to say the things that need to be said and to say your goodbyes.
There's nothing worse you can tell a patient than "there's nothing more we can do for you." You can always do *something,* even if it's just to help the patient accomplish the ending he/she wants.
I agree with Anonymous from today October 27.
I wonder whether contemplating hopelessness and death is handled differently between the patient and the patient's family. The patient will be leaving the world. The family will continue living with the loss. Wouldn't it be logical to consider that the self-interest of the family not to endure the emotional pain of that loss lead them to prolong the hope and ignore the hopelessness? The patient might see that realistically their football is on their own 10 yard line in the battle for the "cure", while the family sets the ball on the opponent's 10 yard line, "first down and goal." The physician, also perhaps wishing for a "cure" has to deal with both parties. ..Maurice.
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