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Schwartz Center Rounds |
Department of Medicine, Division of Hematology-Oncology, Massachusetts General Hospital, Boston, Massachusetts, USA
Correspondence: Correspondence: Richard T. Penson, M.R.C.P., M.D., Assistant Professor in Medicine, Hematology-Oncology, Cox 548, 100 Blossom Street, Boston, Massachusetts 02114-2617, USA. Telephone: 617-726-5867; Fax: 617-724-6898; e-mail: rpenson{at}partners.org
LEARNING OBJECTIVES
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ABSTRACT
Shortly before his death in 1995, Kenneth B. Schwartz, a cancer patient at Massachusetts General Hospital, founded The Kenneth B. Schwartz Center. The Schwartz Center is a nonprofit organization dedicated to advancing compassionate health care delivery, with the goal of providing hope to patients and support to caregivers. The Schwartz Center Rounds is a monthly multidisciplinary forum where caregivers reflect on important psychosocial issues faced by patients, families, and caregivers, and gain insight and support from fellow staff members.
The case is presented of a patient with a precipitous decline in health due to rapidly progressive, metastatic non-small cell lung cancer. The discussion at Schwartz Center Rounds centers on oncologists’ feelings of failure and coping mechanisms when dealing with patients’ deaths. This discussion is followed by a first-year oncology fellow’s reaction to caring for this and other terminally ill patients. Then, to provide a broader framework in which to understand these issues, the emotional cost and measurable benefit of close relationships with patients is investigated. To conclude, further educational initiatives are advocated to assist both physicians-in-training and more senior clinicians in dealing with the difficult issues that arise when caring for very ill and dying patients.
PRESENTATION
A 44-year-old woman with a 25 pack-year history of smoking presented to her primary care physician with rapidly progressive dyspnea and pleuritic chest discomfort. She had no medical problems and took no medications. At this urgent clinic visit, the patient’s physician noted decreased breath sounds over the right hemithorax and an oxygen saturation of 88% on room air. The patient was referred to the emergency department, where a chest x-ray demonstrated a large right-sided pleural effusion and a left-sided lung mass. A chest computed tomography (CT) scan demonstrated the pleural effusion and a 5-cm mass in the left lower lobe. In addition, a 4-cm mass was noted in the right lobe of the liver. The patient was admitted to the hospital, where she underwent a CT-guided biopsy of the liver mass and right-sided thoracentesis, resulting in a diagnosis of stage IV non-small cell lung cancer.
During her hospitalization, the patient required repeat thoracentesis and talc pleurodesis due to rapid reaccumulation of pleural fluid. She was discharged home after a 12-day hospital stay, with an appointment in the thoracic oncology clinic the following week. After extensive discussion regarding her cancer and its treatment options, the patient began chemotherapy with carboplatin (Paraplatin®; Bristol-Myers Squibb, Princeton, NJ, http://www.bms.com) and gemcitabine (Gemzar®; Eli Lilly and Company, Indianapolis, IN, http://www.lilly.com). Unfortunately, 2 weeks into her first cycle of chemotherapy, she called her oncologist to report worsening dyspnea and recurrence of the pleuritic chest discomfort. She was advised to return to the emergency department, where CT scans demonstrated a recurrent right-sided pleural effusion, an enlarging pericardial effusion, and lymphangitic spread of tumor. The patient was readmitted to the hospital for further management.
Despite aggressive interventions, including broad-spectrum antibiotics, steroids, chest tubes, and pericardiocentesis, the patient’s pulmonary status steadily declined. Repeat imaging demonstrated rapidly increasing lymphangitic spread of tumor and continued reaccumulation of pleural fluid. During her final week, the patient required maximal continuous oxygen by facemask and was unable to move from her bed. After extensive discussions regarding her prognosis and the futility of endotracheal intubation, the patient passed away from respiratory failure 66 days after she first felt unwell.
DIALOGUE
Oncologist: Probably one out of every 10 patients that we take care of with lung cancer experiences something like this, where things go so rapidly downhill that you feel incredibly impotent in terms of your ability to help. Frequently, I would enter the room and cry with the patient and her mother. In fact, on four or five occasions, I brought the patient’s mother into the solarium and she just cried. This mother had no other children and her husband was deceased. Her daughter was the only thing she loved completely in her life. It was heart wrenching. I thought to myself, I am not sure that I could do this for the rest of my life. This is just too hard.
Oncology Fellow: This patient focused my attention on the feelings of futility we can have as we treat patients with cancer. You may be naïve as a fellow when you begin your training, but you still have this sense that you are going to be able to cure cancer. Clearly, we can’t always do that, but it can be an emotionally brutal realization.
Palliative Care Fellow: One aspect that made this situation difficult was how the patient wanted to keep fighting until the very end. She wanted everybody to do everything that they could. She was somebody who was very engaging and it was very easy to be pulled into the room with her and feel a lot of her pain, both physical and emotional.
Facilitator: What coping strategies have people used to get through circumstances like this one? Do we feel that we have failed when our patients die?
Oncologist: There was a fellow in my fellowship program who used to get so depressed when chemotherapy didn’t work. I used to think, do you really think you are responsible for someone who fails? I did not understand what he was talking about. Then I became a staff member and, all of a sudden, I am feeling those exact same things. I don’t know what happened. Did I become arrogant all of a sudden? I realized that I really believed I could help people and I believed that if I worked harder or made better choices that people would do better. It is a realization that you have to come to terms with, that "Yes, I will try my best and I want a good outcome, but if one doesn’t occur, it is not my fault."
Oncologist: Does it feel like a failure? Yes. It absolutely feels like a failure, because it is a failure. You have struck out when a patient dies. If you feel bad about it, that’s good. The best advice I ever got was that if you feel like you’re struggling, that’s good. Medicine is a struggle, and you have one of the hardest struggles. It’s not what you say to the patient, it’s really what you are saying to yourself. It’s that "inside struggle" that you just have to go through a number of times before you get any good at it. If you need a little emotional support from your spouse, your friends, or your colleagues, you’ve got to get it. If you are going to be involved in the care of patients, sometimes you are going to just have to hang in there with them.
Palliative Care Physician: We have been talking about expectations, which I think are enormously important. I do think that this is one area where people need guidance. Doctors are typically striving to do well and are hyper-responsible. That’s why we select the people who are here, and that’s a good quality. But that also means that you are going to feel bad when things do not go perfectly. I want to defend guilt as something that you can recognize and can be healthy. You do not want physicians, nurses, social workers, or chaplains that do not care. I think it is a healthy, wonderful thing that you are upset.
Oncologist: One thing that is helpful is reminding yourself that your relationship is with the patient and that these feelings are going to come up. Recognizing that we are quite vulnerable to grief is part of how we get through it.
Palliative Care Physician: I think that the question is "what is doing well?" If the definition of success is having your patients with stage IV lung cancer survive for 10 years, then you are going to feel like a failure. If you can view allowing them to have symptom-free time and good time with their families as a success, then you won’t feel like a failure. Isn’t it how you define success that allows you to continue to work as an oncologist?
Oncologist: I agree. I feel sad, but I do not feel like a failure when my patients die. Sometimes I feel like a failure if I have not had a good relationship with them or they are suffering, but I do not feel like it is my fault when my patients die. I really like taking care of patients and that is what I focus on. I think that when you do a good job of that, it is not failure. Remembering that I did the best job possible of caring for the patient when he or she was alive is one way that I cope with my patients’ deaths.
Oncologist: A difficult aspect of this case was that she really wanted to fight. The fellow and I would discuss whether we were causing more harm than good. Was it unkind of us to continue like this? We tried to say to her that it can also be courageous to admit that "enough is enough." But she really didn’t want to give up fighting. We felt that we were doing something good for her, but sometimes we wondered, in the back of our minds, how much we were really helping her and how much we were just making her last few days on the earth a miserable time in the hospital.
Palliative Care Fellow: Somewhere midway through the second admission, I think that the patient’s expectations started to change slightly. Her expectations of the team started to change slightly. At the beginning, she was talking about cure, going home, getting better, living for 5 more years. At the end, what she expected and what she hoped for was that the team would keep fighting for her. That’s what she wanted. She realized she wasn’t going to get better, but she wanted the team to fight for her. Two days before she died, she said, "I know that everybody is fighting for me, and I feel good about that."
Social Worker: As I listen to this, I realize how far off balance we are pulled in terms of our own personal equilibrium when we go through these experiences, and especially when we do it time after time. I think a lot of what has been said has been about how we get back on balance. We get back on balance by talking with other people who shared the experience with us and other people in our lives.
ONCOLOGY FELLOW REACTION
I met the patient described above during my second month of my oncology fellowship. Her symptoms of cough and shortness of breath had progressed rapidly. She had little time to grasp the seriousness of her illness. Within several days of her hospitalization, she was told that she had metastatic lung cancer. Although I had difficulty believing it myself, I was the one who told her.
After her discharge, we met again in clinic, where I was eager to apply my growing knowledge of cancer therapies. Although recently learned chemotherapy regimens and tumor response rates were at the front of my mind as I entered the room, my patient challenged me to address other issues that were important to her. At this stage in my fellowship, I had not considered the diversity and complexity of the issues that she might raise. They included her fears about the future, expectations both of herself and of me, and preconceptions regarding chemotherapy, cancer, and death. In speaking with her, I realized that I also had not considered how my own feelings might influence my care of terminally ill patients. After this visit, I wondered how I could learn to balance so many competing needs and goals to provide my patients with compassionate and competent care.
After 2 weeks of chemotherapy, she called me at two in the morning. Her breathing was labored and her pleuritic chest pain had recurred. She returned to the hospital by ambulance.
Over the next 4 weeks, I struggled to help my patient as her respiratory status steadily declined. At first, this was focused on medical interventions to prolong her life; later, our main focus became her comfort. In the end, the primary goal became psychologically easing her transition from this world. Although she was quite ill, the work to address her tangible medical problems felt comfortable. This was consistent with my prior years of medical training. The subsequent focus on helping her to die peacefully without intractable psychological distress was much less familiar, and in many ways, much more difficult. Throughout this time, feelings of inadequacy and a mounting sense of futility were difficult to suppress. The stairs and hallway to her hospital room became a well-worn path that made my feet feel heavy. Another day of facing a patient whose disease I could not fix. Another day of holding my feelings inside and putting on a strong face for what I thought was the benefit of the patient. Although I learned with this patient and others that revealing one’s inner thoughts can bring with it an otherwise unattainable degree of closeness, it does not come without cost. Even now, I have difficulty suppressing the image of her sitting stiffly upright in bed on high-flow oxygen. Seemingly random events will trigger it in my mind, and it is present unfailingly each time I pass the room in which she died.
One night, she stopped breathing. I was not there. As I was still coming to terms with the thought that this event was unavoidable, the pain of her loss was even greater that I was not present. Is this why I decided to become an oncologist? Young patients dying in the middle of the night from cancers whose progression I could not slow? How could I fail this kind, young woman?
The first year of my fellowship is coming to an end. At the beginning, I did not realize how powerless I would feel in the face of my patients’ deaths. I did not realize how much more than biomedical knowledge would be required to be an oncologist or how difficult maintaining a sense of personal balance would be. Finally, I did not realize how important it would be to talk with others about these issues or how little of this discussion regularly occurs, even among oncologists.
DISCUSSION
The case described and discussed above vividly demonstrates the difficulties and diversity of opinions that exist when dealing with the deaths of patients. Research into this area of oncology, physicians coping with the treatment of the very ill or dying patient, is not extensive. Yet, it has a great impact on the everyday life of the oncologist. In the U.S., it was estimated that over 1,300,000 new cases of cancer would be diagnosed and over 560,000 patients would die from cancer in 2004 [1]. Patients’ deaths can lead to feelings of failure on the part of the oncologist and a desire to distance oneself from patients to avoid personal harm. Ultimately, these reactions can affect patient care and the physician’s sense of well being, resulting in lower quality care and physician burnout. We can work to avoid these adverse consequences by devoting explicit attention and educational efforts to communication skills, coping strategies, and personal reflection.
Physicians Are Affected by Caring for Very Sick and Dying Patients
In a traditional model of the patient-physician relationship, the patient is at the center of a circle with the patient’s family, friends, physicians, and other caregivers on the periphery working to heal and comfort the patient. In this model, arrows point inward toward the patient without attention given to the feelings or prior experiences of the physician. All energy is devoted to healing the particular patient in concern, who is separate from prior patients and from the physician herself.
It can be argued that a model that more closely mimics actual practice involves multiple bidirectional arrows between the patient and members of the care team, including physicians, nurses, social workers, family members, and friends. In addition, arrows are also present outward in time from the physician to future patients and to the well-being of the physician. In this model, the physician’s feelings and prior experiences influence the care of this patient and future patients and also physician satisfaction. A model in which physician feelings are considered is of particular importance in patient-physician interactions near the end of life [2].
Significant anecdotal literature exists that discusses the difficulties encountered by physicians in end-of-life care. These anecdotal examples can be found both in medical journals and in art [3–6]. The humanities can address these issues from a perspective that is outside the established medical system and with an eloquence that may otherwise be elusive. Sir Luke Fildes’ (1843–1927) famous painting in the Tate is one of the best illustrations of asclepian care. The Doctor captures the professional devotion of Dr. Gustavus Murray who attended Fildes’ son, sitting beside his bed in the posture of Auguste Rodin’s The Thinker. In order to make the picture convincing, Fildes constructed a cottage interior in his studio, positioning the cottage window in front of the studio window. He rose early each day to paint the dawn light as it began to shine through. Very sadly, The Doctor, exhibited in 1891, was inspired by the death of Fildes’ son in 1877. Yet the painting helps to express the profound pain of bearing witness to traumatic events in peoples lives.
Although there has been significant anecdotal exploration of the issues involved in caring for terminally ill patients, there has been little formal investigation into this topic. In a study from two academic medical centers, attending physicians, residents, and interns on a general medicine service were interviewed and surveyed regarding their experiences with randomly selected in-hospital patient deaths. Only 28% of physicians cared for the patients for longer than 7 days, yet 64% of the physicians rated these deaths as moderately or highly powerful, and 45% rated them as moderately or highly disturbing. Longer durations of care and less time as a physician correlated with greater emotional reactions to patients’ deaths [7]. A follow-up study evaluated these physicians’ most emotionally powerful patient deaths by quantitative survey and qualitative interview. Of these deaths, 56% were patients with cancer. Several common themes were noted that amplified the emotional importance of the patient’s death, including closeness of the patient-physician relationship and feelings of responsibility for the death (Vicki Jackson, M.D., personal communication). The closeness of the patient-physician relationship has been found elsewhere to be linked with the emotional impact on the physician of a patient’s death [8,9].
How Close Is Too Close?
A formal definition of closeness is difficult to determine, although several conferences and authors have sought to define the components of the patient-physician interaction that can promote closeness. The components that are thought to be most important include truthful exchange of factual information regarding the patient’s disease and its treatment, building a trusting and positive personal relationship, and the promotion of joint decision-making between patient and physician [10]. When these three facets of the patient-physician interaction are fostered, a close relationship is more likely to manifest.
In the setting of end-of-life care, how close physicians become to their patients can affect both patient care and physician well being. If we become too close to our patients, then our judgment can be clouded, and we can be wrought with difficult-to-console grief with each patient’s death. But if we become too detached from our patients’ suffering, then we risk losing our ability to wield the tools of compassion and empathy. This dilemma was discussed by Dr. David Steensma in the Journal of Clinical Oncology. "Every day I try to steer the narrow, twisting road between the two dangers that face all doctors who work with very ill patients... If I get too close to my patients and allow myself to become emotionally entangled in their suffering...I risk becoming paralyzed in grief. But if I don’t allow my patients’ agony to hurt me at all...if I attempt to preserve myself by making myself untouchable...I am...abandoned by the voice needed to give comfort to my patients" [11].
How close physicians become to their patients can be considered similarly to other types of medical decisions, as a competition between benefits and risks. The benefits of longitudinal care with strong patient-physician communication have been demonstrated in a variety of clinical settings, most extensively in oncology and general internal medicine [10, 12–15]. With the diagnosis of a serious illness, patients look to their physicians to provide information, a plan of action, and psychosocial support. The diagnosis of cancer, in particular, carries with it a severe disruption to the patient’s life. Confusion regarding the diagnosis and treatment options, a sense of loss of control, and uncertainty about the future can lead to anxiety and depression. Studies have demonstrated that better communication and more compassionate care reduce patient anxiety and depression, increase a patient’s ability to adjust psychologically to the diagnosis, and increase quality of life [16–21]. In addition, a close relationship with patients has been found to correlate with physician satisfaction, particularly in care near the end of life [7, 22, 23]. Thus, a close patient-physician relationship can be beneficial in terms of both patient care and physician satisfaction.
Although a close patient-physician relationship can be beneficial, there are consequences to a relationship that becomes too close, including the compromise of a physician’s medical judgment. In the care of the seriously ill, several physician-derived risk factors related to the closeness of the patient-physician relationship have been identified that can adversely affect patient care. Oncologists should be familiar with these factors, which include strong identification with the patient because of similarities between patient and physician or identification with other significant figures in the physician’s life, recent deaths of other patients or personal contacts such as family members or friends, and feelings of failure or inadequacy on the part of the physician [2,24]. When these risk factors are present, physicians must maintain a heightened sense of awareness to avoid compromising clinical judgment. Signs and symptoms of which to be aware include overly frequent contact with the patient, intrusive thoughts about the patient, feelings of personal responsibility to cure the patient’s disease, conflicts with other medical professionals regarding the patient’s care, and thoughts regarding one’s own mortality when dealing with the patient [25,26]. With an awareness of issues that physicians bring to relationships with patients, we can hope to avoid compromising patient care and infusing our own beliefs and wishes into decisions that ultimately remain in the domain of the patient.
An overly close relationship can also have significant effects on the physician. Importantly, it can lead to professional burnout, a syndrome of emotional exhaustion, depersonalization, and sense of low personal accomplishment that results in decreased quality of work. A variety of causes of burnout have been identified in physicians, including heavy workload, dealing with medical mistakes, lack of control over practice environment, problems with work-home balance, and caring for patients with terminal illnesses [27]. Burnout has been investigated in multiple specialties, including oncology. Several studies of oncologists have demonstrated that emotional difficulties that result from caring for very sick and dying patients add significantly to the risk of burnout. In particular, issues such as the depth of the patient-physician relationship and feelings of failure when patients die play a significant role in the development of physician burnout [28,29]. In one large study, the authors conclude that "coping with the problems of palliative or terminal care may be the single most important qualitative factor relating to burnout" [30]. In addition, many studies have demonstrated that physicians-in-training are at a particularly high risk for burnout, often secondary to issues surrounding end-of-life care [31,32].
Can Balance Be Taught?
Given the high rate of burnout, it is important that the skills in end-of-life care necessary to strike a balance between availability for the patient and emotional protection for the physician are adequately taught. A survey by the American Society of Clinical Oncology (ASCO) found that the majority of oncologists do not receive the training necessary for competence in end-of-life care [33]. Many studies have confirmed the inadequacy of training in this area [34]. Several initiatives have been developed to meet this challenge, including the Education in Palliative and End-of-life Care (EPECTM) Project, which has developed a collaborative program with ASCO and the National Cancer Institute specifically for the field of oncology (EPEC-O) and programs based at several medical schools and cancer centers [35–38]. Each of these initiatives works to further the education of physicians and oncologists in the care of very sick and dying patients. Numerous clinical trials and observational studies have demonstrated that communication skills can indeed be taught and impact change on physician practice and patient care [39,40]. Objective data demonstrating benefit in terms of coping strategies are more difficult to obtain, but there is a strong belief that more articulate exploration of the issues inherent in palliative oncology leads to better adjustment through traumatic events. Qualitatively, this appears to be the case and has been reported in several forums developed for oncology fellows [4,22]. Ultimately, the opportunity to discuss these issues in an open forum with peers and more senior staff can be of great help in processing the emotional and psychological issues that arise in the treatment of patients with cancer [41].
CONCLUSIONS
Dealing with the death of patients is an emotionally difficult experience for physicians, particularly physicians-in-training, and can deeply affect their overall outlook on life and their practice of medicine. At the core of this problem is determining the appropriate degree of closeness in the patient-physician relationship such that the role of empathic healer is maintained without losing a sense of self. Although the degree of closeness with each individual patient may vary, honest communication between patient and physician remains the foundation of a productive and meaningful relationship. Communication skills can be taught and should be an important component of education within the field of oncology. Ultimately, informal discussions among oncologists and the organization of educational conferences, such as the Schwartz Rounds, will be important preventative and therapeutic interventions for healing wounds generated by caring for patients with cancer.
ACKNOWLEDGMENT
We would like to thank Drs. Thomas Roberts, Eytan Szmuilowicz, and Vicki Jackson who helped to care for the patient described above.
REFERENCES
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