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Enlightening Us on Pain and Suffering

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Vincent Valentine, MD
University of Alabama
Birmingham, AL, USA

Health care providers in the ISHLT caring for patients suffering from various heart and lung conditions tend to and deal with many who live with disease, experience pain, suffer with medication side effects, cope with attachments to machines, and will eventually die. Protocols have been established focusing on either infection and rejection or bleeding and clotting. Another focus has been adhering to protocols and guiding patients to comply with prescribed regimens to improve survival and optimize outcomes. An important focus is the scientific study of problems ranging primary graft dysfunction, acute cellular and antibody mediated rejection, chronic allograft dysfunction, the various infections and their categorizations, malignancies and countless other known and unknown medical consequences after replacement therapies. Progress has been made through innovation with substantial improvements. However, do we truly know what it's like to exist in such a reality as our patients do? Do we know how our patients live in such a state? How do they go on with the routine activities of daily living? How do their families live and deal with the many problems that can arise? What is our role in this process?

Another dimension of our responsibility, which is seemingly getting lost from our routines of trying to do what's best, is the alleviation of suffering. Like anyone else, our patients over time are aging and must age gracefully. They are dying and must die with dignity. In the process, we will rarely cure yet sometimes relieve suffering but always help, care and guide our patients, especially when they need it. Do we need to specifically know what we are doing? We know more now than we did yesterday. This implies we can help and care for others without knowing or knowing less unless we didn't care or help others before. Sometimes we can help and care using incorrect concepts. The knowledge most useful in our clinical endeavors is not necessarily the knowledge of disease, rejection or infection - for example. Franz Kafka's, "A Country Doctor" taught us about a sense of duty and responsibility. Kafka's famous quote - "To write prescriptions is easy, but to come to an understanding with people is hard" rings loudly today, especially when it comes to opioids for pain relief and especially within managing the patients of the ISHLT. Our focus is to come to an understanding with our patients. We do not want to move away from the personal experience of the sufferer, but objective science steers us away from such personal experiences. We have depersonalized our terminology. The ECMO patient in the ICU instead of the wife with IPF eating, bathing, walking, sleeping and going to the bathroom in the confines of 100 square feet for more than three weeks awaiting lung transplantation, with her distressed husband who hasn't left her side. We all have heard about the meningitis case in room such and such or the PRES case in the step-down unit. Where's the dignity when we type patients by disease? Studying the various Arts, including literature through fiction, short stories, poetry and plays; music and art help recapture the human side of illness and suffering can complete our responsibilities, duties and dedication to our patients.

Science, with its empirical knowledge and quest for truth, is and must be objective. The Arts emphasize the subjective and experiential testimonies. Experiences with illness and suffering have many issues that may be best explained by literature than to what is scientifically understood. It's the relationship with patients and their families which evolves from a verbal and narrative relationship that relies on the Arts and literature. Instead of the science of it all, this relationship benefits more from a knowledge of short stories, fiction, poetry, music, theater and well, life. The knowledge of language could be just as useful in conducting and nurturing this relationship in a wise and successful manner because of the Arts. It becomes an affair of talking, hearing, listening and understanding. Art widens and deepens our lens and improves our dialogue to help us understand our patients. Art and literature provide us with valuable testimonies about the cultural and ideological notions that attend illness, pain, suffering and death. Literature and language illuminate our understanding. As a result, we have a more inclusive portrayal of the essential and peripheral details encompassing medicine and suffering with the life and death of patients. By reading literature, listening to music and watching plays and movies, we are given a larger framework to delve into our patients through repeated conversations about their suffering, their life and their death.

There is a great deal written in the Arts about pain and suffering. We can turn to great literary works and understand how those in pain can actually speak and share with us their suffering. By reading about sickness, suffering and death, as well as spending time with our patients, we will be given a better grasp of these difficult precincts of life. This will enable us to imagine a reality that we cannot afford to experience personally and an experiential view that science cannot provide, unless of course we have suffered with our own disease.

Has anyone ever lived to tell us what it was like to die? Since this is an impossibility, I think, let's examine pain. Can we measure pain? Can we communicate the topics of pain and suffering? Can we understand how people feel? Can we explain the color green to anyone born blind or describe the sounds of a French horn, chimes, or cellos to those born deaf? Focusing on pain is difficult enough. The more articulate we are, the more descriptive we can be. Regarding pain, its perception is not the same in everyone. To help us understand this, there is a definitive study on pain and inflicting pain. Elaine Scarry's, The Body in Pain, is a study of pain, a study of torture and a study of situations where the body is subjected to terrible abuse. She describes pain in terms of a geological metaphor. "When one hears about someone with physical pain, the events happening within the interior of that person's body - may seem to have the remote character of some deep subterranean fact belonging to an invisible geography that however portentous has no reality, because it has not yet manifested itself on the visible surface of the earth." When our patients have a headache, chest pain or back pain, we cannot see their disease, but we hear their words. We look for signs of what we interpret as distress. Through Scarry's geological metaphor, she describes a landscape of a geological or seismographical event happening well beneath the earth that we cannot get to it. She links it to the way we "speak about the heavens, alternatively it seems as distant as the interstellar events referred to by scientists who speak to us of a not yet detectable mystery of an intergalactic scream." This impinges directly with the way we deal with people suffering in pain.

She puts pain in terms of Descartes - "I think therefore I am" by rewriting it as "To have pain is to have certainty - the bedrock of reality." For the observer, pain is elusive - hearing about pain is the primary model to have doubt of what it is. When one speaks of their own pain, it is effortlessly detected, grasped and understood. There is no mystery and there is no doubt. However, observers such as ourselves when evaluating patients in pain, may recognize that pain cannot be effortlessly detected, grasped or understood. It is easy and almost certain for us to be unaware, unattuned and not sensitized to the reality of our patient who may very well be suffering or in pain - even with our best intentions with so-called empathy. It is the person who is unequivocally in pain which may be the most obvious example of what it is to have certainty. In our assessments, pain is what simultaneously cannot be denied and cannot be confirmed. Different from the sciences, Art in some ways can shed light on our ability to make the pain of the sufferer - to put into Scarry's words - "less unstateable, less unshareable and hopefully undeniable to the observer." Art performs the service of enlightening us.■

Disclosure Statement: The author has no conflicts of interest to disclose.

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