Abstract
What is hope? Webster's dictionary defines hope as a verb meaning a desire with an expectation of a belief in fulfillment. Hope is also defined as trust and reliance. What do patients, families, and health care providers hope for? In this issue of the Journal of Palliative Medicine, Dr. Wallace Chi Ho Chan reports on negative outcomes suffered by both patients and their families when the truth is withheld. He tells us that the awareness of prognosis may not harm Chinese patients as commonly thought and that not knowing can result in patient anxiety and communication difficulties. 1 I suspect that these families may be thinking that withholding truth is “helping keep hope alive.”
It seems that our society defines hope mainly in terms of living longer. I think this may be the most important hope experienced by physicians, families, and caregivers, but I wonder if it is as highly valued by our patients? I recently read a book written by Dr. Allan Hamilton, a professor of neurosurgery at the University of Arizona, entitled The Scalpel and the Soul: Encounters with Surgery, the Supernatural, and the Healing Power of Hope.
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In the chapter entitled “The Thread of Hope,” Dr. Hamilton tells the story of Donald, a 23-year-old man he treated with an extremely aggressive glioblastoma multiforme. He underwent multiple surgeries and radiation and chemotherapy treatments. At one point, Donald, an avid fly fisherman, and Dr. Hamilton had the following conversation:
“So I guess there might come a time when the tumor might be draggin’ me down. Makin’ it so I am weak or can't walk straight. Or maybe makin'me loopy, wacky. I just don't want my mom to have to see me like that. I don't want her takin’ care of me in that shape. So if things are headin’ south for me, I want you to tell me when it's time to go fishin’. You understand?” He looked at Dr. Hamilton and said “Promise me, doc, you'll let me know real straight when it's time for me to give up and go fishin’, okay?” Dr. Hamilton promised.
Although Donald had been “wiped out” by a year of radiation and chemotherapy, he appeared to be in remission for about a year. The tumor recurred in the third year. He had more surgery, started experimental chemotherapy, and subsequently needed a ventriculoperitoneal shunt. Three months later he developed altered mental status and was found to have a blocked shunt. At surgery to revise the shunt it was found to be obstructed with tumor cells. Following the surgery, Dr. Hamilton had a discussion with Donald. He told him that he thought his life expectancy was days to weeks and then said, “Donald, you remember once you asked me to tell you straight when it was time to go fishing? Well it is time. Now, Donald.” He was discharged home that afternoon and Dr. Hamilton received a phone call from Donald's mother the following morning telling him that Donald has died during the night. Dr. Hamilton goes on to say that he is convinced that Donald died that night because he had “mistakenly cut the thin thread of hope that had kept him alive and aloft.”
Why did Dr. Hamilton feel that he had failed his patient? I look at this situation entirely differently. As defined above, hope is a desire (that his mother be spared from seeing her son “loopy, and wacky”) with an expectation of a belief in fulfillment that he may have fulfilled by “giving up” as Dr. Hamilton believes. Hope is often about control. Dr. Hamilton had estimated that Donald had a very short life expectancy, and by being honest with him he may have given Donald the information he needed to remain in control.
So I ask you, is hope something that can be kept alive? Is there a biochemistry of hope? The placebo effect is a physiologic response, mediated by biochemistry, fueled by hope. Scientists have identified a variety of neurotransmitters involved in human emotions. The field of psychoneuroimmunology studies the effects of psychosocial stressors on physical health, and this mind-body connection is being incorporated into some academic medical centers. 3 I wonder what effect the anxiety experienced in Dr. Chan's patients had on their disease course?
By tying it so closely to diagnosis and prognosis I think we limit hope. In my work with patients with amyotrophic lateral sclerosis (ALS), I am constantly surprised at the optimism and joy I see in many of the patients despite having a debilitating disease for which there are essentially no disease modifying treatments. Studies have documented the high quality of life of ALS patients. 4 In a study of hope in palliative care, the authors found that ALS patients remained hopeful despite their functional decline. 5 These patients viewed hope in many different ways including not only a hope for a cure but also the appreciation of support from family and friends, searching for information, spiritual support, concern about imposing a burden on their family, adapting to changing physical capacities, living in the moment, and altruistic concern for others.
In their article in the Art Of Oncology series, authors Von Roenn and von Gunten tell us that hope is quite resilient and most adults cope and sustain hope by making plans for the future, even if the future isn't what they would want if they could choose. 6 There are many things that patients, their families, and health care providers can hope for in the course of a life-limiting illness: a good response to and tolerance of disease modifying therapy, attending an important event, optimal symptom control, completion of important business, and attending to psychosocial and spiritual relationships and roles. We say it all the time but we have forgotten how true it is: “Hope for the best—prepare for the worst.” What we are telling people is that we are very hopeful and we want to also make preparations in case the result is less than we have hoped for.
Not being honest with a patient and his or her family is offering false hope, and the sequella can include patient and family despair and physician burnout. It also impairs the ability of the physician to provide honest support. Tulsky points out that how one communicates can be more important than what is said. The physician who spends time with the patient and the family, who is honest and compassionate, and who expresses empathy will offer a hopeful presence even in the face of bad news. 7
All of this being said, I think it is our responsibility as hospice and palliative medicine professionals to recognize the tension many people suffer between being protective to “keep hope alive” and causing more suffering. We need to share the results of Dr. Chan's work with our medical colleagues, our patients, and their families and caregivers. We need to debunk the myth that “hospice kills hope.”