The Oncologist as the Patient with Cancer or Relative

By Teresa Gilewski, MD, Martin Raber, MD, and George W. Sledge Jr., MD

Overview: To an extent, physicians are familiar with the consequences of illness through their interactions with patients. However, when cancer becomes personal, the physician has an opportunity to gain greater insight into the intricacies of medical care, including its humanistic elements. Physicians who encounter cancer in themselves or in a relative may deepen their understanding of the patient experience.

Their views provide a unique perspective, on the basis of the convergence of their medical knowledge and personal reaction to illness. They also confront distinct challenges specic to their work environment. An enhanced recognition of their viewpoints provides valuable information in the quest to alleviate patient suffering and explore the fundamentals of patient care.

ERSONAL EXPERIENCES may inuence an individuals thoughts and actions. It is plausible that a physicians perspective of patient care may be affected by an encounter with illness on a personal level. Any human being who is sick or who has experienced illness along with a family member or close friend has the opportunity to gain considerable insight into the complexities of medical care. This may be especially true for physicians who have the unique position of viewing patient care from the perspective of the provider as well as the recipient. In particular, the humanistic aspects of medicine may become more apparent and more meaningful. Human interactions form the core of patient care, and optimal patient care requires adequate observation and self-reection of these interfaces.

Teresa Gilewski, MD: The Humanistic Side of MedicineThe Impact from a Personal Cancer Experience

The practice of medicine is a complex interplay of science, humanism, business and social policy. During different periods in history, the emphasis on these various elements has shifted. For example, many of the basic moral and ethical tenets of medicine were established by Hippocrates and others in ancient Greece at a time when there was limited scientic knowledge.1 With the onset of new scientic discoveries, a greater focus on technology and science was inevitable. In 1910, the noted educator Abraham Flexner emphasized the importance of both a scientic and clinical research basis in medical education.2 His report helped to restructure medical school curriculum to one that was more research focused. However, 15 years later he felt that scientic medicine was . . . sadly decient in cultural and philosophic background.3 Finding a balance between the scientic and the human components of medicine remains a challenge to the present. In addition, now there is an ever-increasing presence, on a daily basis, of the business and social aspects of medical care. The humanistic aspects of medicine have often become secondary to these other more easily measurable facets of medicine. However, in the last decade medical groups, such as the American Board of Internal Medicine and Institute of Medicine, have underscored the importance of practicing medicine in a humanistic manner.4,5 The association between professionalism and humanism has become clearer.6,7 Yet, there are many challenges, both on institutional and personal levels, that may hinder the incorporation of a humanistic approach into patient care. These include the emphasis on research and greater clinical productivity as well as the stresses associated with caring for ill patients.3,8

The medical literature contains heartfelt essays that focus on the importance of human interactions in medicine.9,10 In particular, the sections A Piece of My Mind in the Journal of the American Medical Association and the Art of Oncology in the Journal of Clinical Oncology provide physicians an opportunity to contemplate various aspects of the personal impact of illness.11-13 Narrative medicine utilizes the practice of writing about patients experiences and the writers reection on those experiences to foster empathy.14 Physicians usually develop a general awareness of the difculties that patients confront, but not necessarily a true understanding of those struggles. However, physicians who encounter cancer in themselves or in a family member develop a new intimacy with illness.15-17 This altered relationship with disease may result in a heightened awareness of the consequences of sickness.18 Once there is a personal connection with cancer, the day-to-day routine of the medical system may assume a fresh look. What may have seemed trivial and of little signicance may become momentous. Some of the usual inconsequential basic human interactions between a patient and the physician suddenly become memorable for their compassion or lack thereof. Experiencing cancer on a personal level may provide the physician with new points of reference that have the potential to inuence ones perspective of patient care. These experiences may originate not only in adulthood but in childhood as well. In childhood, the effect of caring for a sick relative and observing the interactions of adult relatives and physicians coping with illness may be long remembered. This child who later becomes a physician may use some of these observations toward the care of patients. Of course, each physician brings a unique personality and other life experiences to every situation. However, exposure to personal illness has the potential to enhance the physicians appreciation of the fragility and uncertainty of life as well as the value of kindness. The physicians appreciation of the human experience surrounding illness may be heightened, not only in regards to patients but in regards to colleagues. Perhaps on the basis of this greater awareness, a deeper recognition of the essence of physicians may develop. Specically, that they are

From the Memorial Sloan-Kettering Cancer Center, New York, NY; M. D. Anderson Cancer Center, Houston, TX; University of Indiana, Indianapolis, IN. Authors disclosures of potential conicts of interest are found at the end of this article. Address reprint requests to Teresa Gilewski, MD, Memorial Sloan-Kettering Cancer Center, 300 East 66th St., New York, NY 10065; email: gilewskt@mskcc.org. 2012 by American Society of Clinical Oncology. 1092-9118/10/1-10

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imperfect human beings, who in their relationships with patients may at times fall short of their own best intentions and at other times reach profound moments of harmony. Does experiencing illness personally make one a more humanistic physician? Perhaps for some the answer is yes, for others no, but for all it is a possibility. Regardless, it is important to generate dialogue about the humanistic element of medicine because it is fundamental to patient care. As the noted physician William Osler (1849 1919) eloquently stated, Care more for the individual patient than for the special features of the disease . . . Put yourself in his place . . . The kindly word, the cheerful greeting, the sympathetic lookthese the patient understands.
Martin Raber, MD: The Oncologist as the Patient

Without question, being a physician has inuenced my experience as a patient and being a patient has inuenced my experience as a physician. I am not sure that it has made me a better physician, but I know that it has made me a different physician. It has also given me a different view of the clinic, the hospital, and the medical teams. At the same time that I have been a patient, I have also tried to maintain a semblance of an academic career and continue to see patients in my area of expertise. This has been possible only because my institution and my colleagues have been willing to make substantial accommodations to limit my responsibilities and to cover me whenever I was unable to work. I dont think anything prepares you for being sick, and the experience of entering the hospital as a patient is so incredibly different from that of entering it as a physician that, at rst, one is totally disoriented. As physicians, we tend to think of the hospital and clinic experience as centered on us. Although it is true that the physicians decisions and comments are what drives the delivery of care, in many respects the patient experience is driven by the ancillary personnel.

KEY POINTS

A personal experience with illness provides a unique opportunity for the physician to gain considerable insight into the humanistic elements of medicine that are at the core of patient care. The patient experience is very much dependent on interactions with the ancillary staff; how they treat each other and how you treat them is as important as how they treat the patient. Physician-patient communication is more difcult than it seems, particularly in areas in which we do not have lab tests, images, or clinical ndings to explain the situation. Caring for patients while also being a patient is a challenge; it requires substantial accommodation on the part of ones colleagues, team members, and patients. A physician who is the relative of a patient with cancer may struggle with distinctive challenges that relate to the intersection of the physicians medical knowledge and personal emotions with family dynamics.

Patients spend most of their time with clinic and chemotherapy nurses, clerks, radiology and laboratory technologists, patient transportation personnel, and others that we tend not to consider as central to the patient experience. If they dont deal with the patient in a positive way, the patient experience is not good. This has to do with not only how they deal with the patient but also with each other, and how you as the physician deal with them. Good communication skills are important not only for the physician but also for everyone who interacts with the patient. Patients see and hear everything that goes on. We sit in the waiting rooms and observe the interactions and process what we see. Even in the examining room we hear the conversations in the hallway between physician and nurse or trainee. Sitting in a waiting room (which is what we patients do a lot of) I am always amazed at how perceptive my fellow patients are about the staff and the clinic operations. Another surprise to me as a physician was the difculty that I have had at times communicating with my medical team. This related most often to symptoms or situations for which there was not a good laboratory or radiologic corollary. I have come to believe that the doctor-patient visit in the clinic is much more stereotyped than we think. Although the physician wants to nd out how the patient is feeling, assess the patients condition, and give the patient information about his disease and plans, and the patient wants to tell the physician how he feels and understand his condition and the plans, there is tremendous opportunity for misunderstanding. Patient and physician have somewhat different goals and expectations of the clinic visit. They also have a conversation in which many words are used without prior agreement as to their meaning. Good, bad, fair, tired, and alright are examples of words that may mean very different things to the patient and the physician. That realization caused me to substantially change the way that I interview patients in my clinic, and the way I speak to my physicians in their clinic. Trying to maintain a medical career at the same time one is facing serious illness, and undergoing cancer therapy, is a challenge. Early in the illness I had what I call doctorpatient confusion, and was unable to practice at all. Later, after I recovered from some devastating complications, I found that I had passed through that phase, and once again began to see patients. In this period I have come to realize that my illness has had a major effect on my colleagues who have often been simultaneously my colleagues and physicians, on my team, and on my patients, all of whom have had to adjust to the realities of my health problems. As have I.
George Sledge, MD: The Oncologist as the Relative of a Patient with Cancer

Because cancer is common, and because cancer doctors have relatives with cancer, cancer professionals regularly come face to face with cancer in relatives. Their unique perspective on cancera perspective that has both intellectual and emotional components derived from years of caring for patients with cancer clearly affects how they interact with those relatives, both for better and worse. Physicians are routinely taught to avoid taking care of relatives, an admonition that is both wise and rarely completely respected. Wise, because physicians need to maintain emotional distance from their patients. Every relationship with a relative is fraught with family history,

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and that history is not always either happy or uncomplicated. That history, and ongoing family dynamics, can complicate recommendations, and the recommendations themselves can easily become the source of future family discord as well as personal feelings of grief or guilt. At the same time, physician-relatives of patients with cancer are in the enviable position of being able to point the patient with cancer in the direction of the best care, or at least of the best caregiver, available. Although much of cancer care is standard, not all cancer professionals are equivalent in either expertise, competence, or compassion, a fact that physicians are well aware of: a doctors doctor is often dened in terms of whom a physician is willing to have care for a relative. A physician faces additional challenges as the relative of a patient with cancer. Physicians are routinely asked what would you do if I was your . . . [sister, brother, daughter, son, mother, father]? This question is more difcult to dodge or ignore when it comes from a relative, and the responsibility attached to the answer differs qualitatively from that encountered in usual practice, rightly or wrongly. Physician-relatives also face challenges related to their interactions with caregivers and hospital systems. If a physician disagrees with the advice given to a relative, what is that physician to do? If an interaction with the health care system is a negative one, does the physician-relative claim special attention for the patient? Under normal circumstances, most physicians accept that their colleagues deserve substantial autonomy in decision making and therapeutic recommendations, and recognize that the health care system is imperfect. Indeed, no health care system would long survive intrusive oversight by colleagues. Yet this dynamic frequently changes when a physicians relative enters the health care system, particularly that part of the system in which the physician-relative practices. This

may result in excessive diagnostic testing and overtreatment of the relative, often to that patients detriment, a situation akin to the defensive medicine practiced by physicians concerned with malpractice. Physician-relatives who are aware of this dilemma may be caught between the Scylla and Charybdis of this dynamic, wishing the best care for a relative but also wishing to make the best use of a colleagues expertise and wisdom. The physician is also faced with the problem of knowing too much. This is frequently the case when the physicians relative has a poor-prognosis cancer. In this setting, relatives may explicitly encourage false hope, leaving the physician in the emotionally precarious position of balancing reality and optimism. These discussions may have long-term consequences, not just for the patient, but for the family as a whole: emotional wounds that never completely heal. Under normal circumstances, the physician can go home and unwind after a hard day at work, but when home is the source of stress there may be no place to turn. With all patients with advanced disease, there comes a time when active therapy is no longer appropriate, and in which a focus on quality-of-life measures, advanced care planning, and hospice care become reasonable. What is the role of the physician-relative in selecting that moment? Indeed, is there a role? Finally, the physician-relative must deal with his or her own emotional needs, both during the relatives treatment arc and after a relatives death. Physicians are often excellent and compassionate communicators when dealing with patients to whom they are unrelated; but it is the rare physician who is capable of expressing his or her own emotional trauma, or who is capable of instituting the healing process we all deserve in our own most profound times of grief and loss. Dealing with a relatives death reminds us of our own mortality, of that end to which we all must go.

Authors Disclosures of Potential Conicts of Interest

Employment or Leadership Positions Consultant or Advisory Role Stock Ownership Research Funding Expert Testimony Other Remuneration

Author Teresa Gilewski* Martin Raber* George W. Sledge Jr.*

*No relevant relationships to disclose.

Honoraria

REFERENCES
1. Greek Medicine, History of Medicine, U.S. National Library of Medicine, National Institutes of Health. http://www.nlm.nih.gov/hmd/. Accessed March 7, 2012. 2. Flexner A. Medical education in the United States and Canada: A report to the Carnegie Foundation for the Advancement of Teaching. New York: Carnegie Foundation for the Advancement of Teaching, 1910. 3. Cooke M, Irby DM, Sullivan W, et al. American medical education 100 years after the Flexner report. N Engl J Med. 2006;355:1339-1344. 4. American Board of Internal Medicine. Project Professionalism. Philadelphia, Pa, America Board of Internal Medicine, 2001;4. 5. Hewitt M, Herdman R, Holland J (eds). Meeting Psychosocial Needs of Women with Breast Cancer. Institute of Medicine and National Research Council. Washington, DC, National Academies Press, 2004. 6. Cohen JJ. Linking professionalism to humanism: What it means, why it matters. Acad Med. 2007;82:1029-1032. 7. Swick HM. Professionalism and humanism beyond the academic health center. Acad Med. 2007;82:1022-1028. 8. Whippen DA, Canellos GP. Burnout syndrome in the practice of oncology: Results of a random survey of 1,000 oncologists. J Clin Oncol. 1991;9: 1916-1921. 9. Walshe FMR. Humanism, history, and natural science in medicine. BMJ. 1950;August;12:379-384. 10. Pickering WG. Kindness, prescribed and natural in medicine. J Medical Ethics. 1997;23:116-118. 11. Young RK. A Piece of My Mind. John Wiley and Sons, Inc. Hoboken, New Jersey, 2000. 12. Loprinzi CL. A new addition to the J Clin Oncol: The Art of Oncology When the Tumor is Not the Target. J Clin Oncol. 2000;18:3. 13. Steensma DP. Art of Oncology: New voices wanted. J Clin Oncol. 2011;29:3343-3344. 14. Charon R. Narrative medicine-a model for empathy, reection, profession, and trust. JAMA. 2001;286:1897-1902. 15. Biro D. One Hundred Days: My Unexpected Journey from Doctor to Patient. New York: Random House; 2000. 16. Mullan F. Seasons of survival: reections of a physician with cancer. N Engl J Med. 1985;313:270-273. 17. Liberman L. I Signed As the Doctor: Memoir of a Cancer Doctor Surviving Cancer. Port Charlotte, FL: Booklocker.com, Inc.; 2009. 18. Gilewski T. The physician as the patient [video]. New York: Memorial Sloan Kettering Cancer Center; 2007.

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