The Role of Hope

Yesterday a patient's father appeared in the hallway outside our department.   Professor O is a large man, tall and sturdily built, with a kind round face and wild, grey-and-black eyebrows over large, sensitive eyes.  He stood there with head hung down and shoulders slumped in a gesture of abject sadness.    

Professor O had walked over to the pediatric building from the oncology department in the main hospital building, to update us on the condition of his son L, and more importantly, to feel the comfort of familiar faces who have known and loved his son through many years of treatment. 

He informed us that L is not doing well, that he is reacting very badly to a recent bone marrow transplant and is extremely weak.  Despite the specialized drugs, L's body is fighting the transplant (a process known as GHVD) and destroying his own organs in the process.

Professor O is a highly educated man, a lecturer at a local university, with a good grasp of English (not his first language) and keen ability to describe complex ideas in apprehensible and interesting terms.  He is rational and emotional in equal measures, punctuating medical and scientific discussions with sensitive observations about his son's and his own emotional experience with illness.  During our many talks over the years, I have always been impressed by the way in which he speaks of his son with  deep love and sensitivity. Toward the hospital staff he consistently conveys a sense of respect, together with his belief that despite our best efforts, these multiple relapses and failures of treatment are the will of G-d.

When he arrived in the hall, Professor O was joined by two of us from the school staff and by L's oncologist.  He described how terrible his son looked and felt, the constant loss of blood, L's refusal to eat or drink.  As he spoke, his shoulders sank further toward the ground as his gaze extended outward toward ours, in search of comfort.

We understood our role:  to listen, to confirm, and most crucially, to help this man hold onto his sense of hope.  He and L had understood the heavy risks of transplantation, yet he seemed to be asking the oncologist for confirmation that proceeding with this transplant had been the right decision.  Yes, she assured him, as tears streamed down his face, this was the only option. The medicine can still help him survive the GVHD.  There is still reason to hope.

Professor O understands, L understands, and L's physician understands.  L's chances for survival are low, and meanwhile he only suffers.  Yet no one has given up hope.  For all we know, it is hope -- his own, his father's -- and not medication, that is keeping L alive.  

This hope is not misplaced optimism or denial.   It is not a substitute for recognizing reality.  Rather, I think, it is that uniquely human feeling that we are part of something greater and better than what we can see and feel at this moment.

I don't know the pain, suffering and fear L feels, nor do I truly understand that other kind of pain and suffering, and guilt, felt by his father.  I want never to know their experience from within.  But I believe that from our external point of view, we can still help L and his family hold onto hope.  From now on, it may be the only way we can really help them.*

Keep the balance,

ALN

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* For more reading on the subject of hope, I really like this website -- available here, in a slightly different form, as a PDF download -- sponsored by the St. Jude Children's Research Hospital.  Saint Jude is known to those of Catholic and other faiths as the Patron Saint of Lost Causes, yet somehow this is not at odds with the hospital's mission of encouraging hope in patients and their families.