In my June blog, “The Redefinition of Hope,” I promoted a more flexible characterization of hope among cancer patients by contending that goals less ambitious than actual cure ought to be part of the new vocabulary. Time for closure in life, restating affections, mending friendships, a tranquil death, and other desirables were cited as examples of this new vocabulary. I went on to state that trust between cancer patients and oncologists was essential to the development of hope, whatever its definition. Let’s explore the linkage.
As it pertains to this subject, to trust is to have faith and confidence not only in the integrity and commitment, but especially in the beneficence of the person in charge; bottom line: “Will my doctor do and advise what is best for me, and not what is scientifically or personally challenging?” One might ask why wouldn’t beneficence automatically be part of their doctor’s persona? In fact, it usually is, and most oncologists believe they always act in the best interest of their patients. However, even well meaning and intelligent individuals are sometimes self-delusional. In deciding how much treatment is enough, the cancer physician must repeatedly question the logic and practicality of a given therapy, and importantly, whether they would recommend the same if the patient was their own family member. This is the essence of beneficence; and even if the chosen strategy turns out to be wrong, it is morally defendable if designed and implemented with the best interest of the patient in mind.
This all sounds simple, but in fact, pride, vanity, and other unresolved or perhaps even unrecognized psychic forces within a physician can complicate a patient’s life and death. Physicians, like other talented and intelligent people, are not immune to the insecurity that seeks reassurance of their abilities, and whether realized or not, part of their self-image depends on success and failure in patient care.
Additionally, many physicians are extraordinarily competitive, and the instinct to fight on can be strong – I personally am guilty of this. Some oncologists seem to feel obligated to explore every avenue of treatment, no matter how unlikely the benefit. Even those with the best of intentions too often fight the battle to excess, and in an effort to “do something,” use up valuable end-of-life time and resources. This desperate behavior has been described as reflective of our current society’s refusal to admit the existence of death’s inevitability. In this high-tech biomedical era, when the tantalizing possibility of miraculous cures is dangled before patient and family, the temptation to see therapeutic hope is great, even in those situations when common sense suggests otherwise (1). I certainly do not want to imply that we should avoid new and creative methods; instead I am appealing for an early reality check – a phrase that every oncologist understands. With this thinking the basis of my logic, I believe that the importance of the relationship between trust and hope cannot be overstated.
In forthcoming blogs, I will mention the role of the cancer physician as a leader, and in this part of medicine, the ability to find a balance between empathy and practical guidance throughout the cancer journey is the sine qua non of good leadership (2). As a relationship between patient and doctor takes shape, the bond that develops and the patient’s dependence on the doctor both intensify, and as this state evolves, it becomes obvious that the paradigm is straightforward: good doctor/patient relations come out of honest and forthright dialogue that is based on realism rather than paternalistic avoidance of unpleasant news. Such a relationship begets trust of the physician, which in turn begets acceptance of the inevitable, as the patient is led to that place that has been referred to as the great mystery at the edge of life and death (3). Hopefully, that pathway is avoided, but truth be known, the thought and concern lurks in the mind of most cancer patients.
It is daunting for anyone to think of putting his/her life into the hands of a virtual stranger, no matter how decorated their curriculum vitae. Ideally a high level of confidence and trust grows as the patient and oncologist begin to interact, but the first step in the development of that depends on the innate sense of integrity and honor emitted from the doctor, and on a more practical level, the doctor’s communicative skills. Just how a physician is able to walk that fine line between making real the gravitas of cancer without transmitting pessimism is a skill some are programmed with, some learn, but unfortunately some never master.
As I pointed out, in years past many doctors behaved paternalistically in their guidance of patients, from the cancer’s discovery and on into the final stages. It was not intentional disrespect, but instead reflected the habits of the times. Be that as it may, such is happily no longer the practice, and the new approach of communication includes patients being told and understanding the facts of life, and in many ways, how a doctor does this is instrumental in building the patient’s trust. By establishing this quality of dialogue, a patient is better able to separate what’s real and what’s fantasy, and importantly, once established this trust should be sacrosanct. To intentionally violate it is wrong, and the violation usually is not forgiven.
From the very first minute of introduction, the doctor must also reflect an intense sense of responsibility as the patient’s advocate. The oncologist must fine a balance between one extreme and the other – obviously the patient’s wish for recovery being the definition of success. The patient must understand the realistic gravity of the situation, or contrarily, if the threat is less, they must be talked to with reassurance- offering no guarantees of course- but also making clear the simple fact that all cancers are not the same, and the stigma of the absurd term, “the big C”, is a disservice to patient education. This is especially important in the elderly, in whom there is fear and anxiety about a disease that they may have grown up thinking of as an automatic death sentence. So establishing a frank dialogue is the entry point to a patient’s confidence.
Critical to all definitions of hope is the keen difference that exists between false and true hope, and no matter how tempting the desire to create optimism, doing so is ill advised and short sighted if it creates false hope. There is essentially no role for this state. Better for a patient to hear truth, no matter how bad, than fiction that, in the case of cancer is invariably followed by disappointment, and in many cases a sense of betrayal. The patient’s reliance on the encouragement given and the optimism emitted is a direct product of the trust of the person in charge.
As I reflect on these matters, I am reminded of the words of George Eliot, “What loneliness is more lonely then distrust.”(4) Much like jealousy, distrust is erosive and wastes emotional energy, and worrying about the honesty of what one has been told fits this statement perfectly.
Submitted by Roy B, Sessions, MD, FACS
Charleston, SC
*** Author’s note; This blog is a variation of a previously written essay that I published in the journal, Psychology Today.
References:
(1) Sherwin B. Nuland, How We Die; Reflections on Life’s Final Chapter (New York: Vintage Books, 1995), 260
(2) Roy B. Sessions, The Cancer Experience: the Doctor, the Patient, the Journey (Roman and Littlefield Publishing, 2012), 33
(3) Kathleen Dowling Singh, The Grace in Dying (Harper Collins, 1998)
(4) George Eliot, Middlemarch (London:Blackwood and Sons, 1874)
Dr. Sessions,
Thank you for the gifts you offer to the medical community and their patients. Your enlightened physician’s approach clearly helps the patients heal, regardless of whether they are cured, or not. You are able to accompany them to choose wholeness in the midst of dealing with what our culture labels as broken.
Dr. Sessions – thank you for a wonderful article. Your open and forthright description of the challenges facing the oncologist is refreshing. As a former hospital administrator I encountered too many oncologists who wouldn’t give up and who saw their patient’s death (or even the patient’s choice of simply palliative care and hospice) as their personal failure. I hope many oncologists have read your article as it is well written, and approaches the challenge for the oncologists from many viewpoints. I would offer up one variation on your commentary and that is the notion that the oncologist is, de facto, the “person in charge.” I would suggest that both patient and oncologist view their relationship as a partnership where courses of treatment are co-created. Without doubt the oncologist is the subject matter expert. But the decision on what course of treatment to pursue, or whether to even pursue active treatment or not, ultimately rests with the patient. This is best done in collaboration with the physician. Think of it this way – with his or her expert knowledge, the oncologist leads the discussion about the diagnosis, treatment options, side effects of treatment, likely outcomes, etc. Having been given this information, the oncologist has opened up the space for the patient to lead the discussion on what will actually be done. And for patients this situation puts in sharp relief the need to discuss one’s choices on treatment options in general, especially end of life treatment options, with one’s spouse, partner, children, etc. Living wills and health care power of attorney documents help enormously in this regard, but nothing supersedes a family discussing what an aging parent desires in the way of treatment options near the end of life. Starting these discussions when the end of life is at hand is an extremely difficult way to approach it. It is hard enough when one is relatively healthy. But that is the best time to have a family discussion about a point in time we will all reach. Thank you again for an great post.