During my years of training to become a hematologist-oncologist, I was privileged to observe senior physicians interact with their patients. I often wondered how these conversations would impact on the way each patient coped with his or her diagnosis, and how they would be remembered. Attending physicians had very different bedside ‘manners’ and it soon became apparent that some felt comfortable with emotional expression while others were reserved and distant. It is as hard to find words of comfort during bad news conversations as it is to devise a treatment plan for acute leukemia. I wondered too about conversations with roommates, assigned by chance, and about the casual chatter with the individual delivering a breakfast tray or taking out the trash. I appreciated the fundamental role of nurses, present at the bedside far longer than anyone else, listening, debriefing and providing counsel, and whose job involved the most basic and representative of all empathic acts: touch.
I studied the patient-physician relationship focusing on the lived experience of both patient and doctor, interested in discovering the essential elements of therapeutic communication. I learned that patients recognize compassion and appreciate honesty, clarity, confidence and guidance. I noticed, over and over, that having a strong working relationship with their doctor helped patients overcome many struggles imposed by a life-altering illness and an uncertain future. Turning then to the other side of this partnership, I learned that physicians were not always naturally gifted in relational skills and welcomed the opportunity to engage in workshops with the goal of improving their communication with patients and families. I also observed, and the literature supports this notion, that physicians are burdened by the emotional labor inherent in clinical practice.
Considering the lessons learned from examining both sides of the doctor- patient relationship, it seems to me that we can improve upon the status quo by approaching both sides of the patient-doctor partnership. Programs that address the needs of patients and those of healthcare professionals are most likely to succeed and result in better outcomes. Patients can benefit from interventions that promote self-efficacy and from access to high quality information about disease and treatment. Clinicians can benefit from training to improve their communication skills and clinical performance, and by ensuring these important skills are valued and respected throughout the healthcare establishment.
My advice to patients begins at the time of diagnosis. It may take hours or weeks to come to terms with a diagnosis of cancer and it is difficult to do this alone. Enlisting the help of family and/or friends and members of a trusted community is enormously helpful. Assembling a team of experts and establishing comfortable partnership is the next step. Cancer clinicians welcome the opportunity to share the responsibility of making treatment decisions with their patients. In order to do so, it is important to be calm and well-informed. Fortunately there are reliable websites that provide information about cancer and its treatment, vetted by top experts and regularly updated. Telemedicine and email have expanded the traditional way of thinking about communication and information gathering and sharing. These media provide additional opportunities for patients to access test results and stay in touch with members of the professional team.
It is important for patients and clinicians to find a comfortable way of talking about challenging topics, ranging from sexual intimacy or anticipatory grief, to the cost of treatment or the fear of dying. There may be challenging moments and these may be experienced as stressful. Taking a few moments to take a deep breath and reflect on the situation, perhaps naming the stress or feeling that is problematic can help identify a solution. Another useful strategy is to think aloud about all possible options and choices for solving the problem at hand, such as how best to treat a refractory symptom or considering tradeoffs and expectations when choosing a new treatment for advanced cancer.
Let me end by sharing a few tips I have found helpful:
- Know your own communication style and preference for informing and being informed.
- Trust the clinicians involved in your care and think of them as partners
- Make your needs known, doctors and nurses cannot read your mind
- Prioritize your concerns, if you present your doctor with a very long list of questions or symptoms at the very end of the visit, it’s quite likely that you will both end up frustrated
- Think about how you prefer to hear important health information such as the results of a biopsy or a scan and then convey that to your doctor or nurse
- Beware of the common trap of thinking in terms of all or nothing or rushing to conclusions
- Share the burden of not knowing how things will ultimately work out
- Find ways of being at ease, even during frightening or turbulent situations
Dr. Schapira attended Dartmouth Medical School and then completed an internship and residency in Internal Medicine at the Beth Israel Hospital in Boston. She then did a Fellowship in Hematology and Oncology at the Brigham and Women’s Hospital in Boston followed by a Research Fellowship in the Division of Aging at Harvard Medical School. Dr. Schapira practices at the Massachusetts General Hospital in Boston and her clinical work is devoted to the treatment of breast cancer. She is actively involved in clinical research of treatments for breast cancer and psychosocial issues that affect patients and families. In addition, Dr. Schapira has played an active role in both research and advocacy related to increasing awareness of cancer research and clinical trials among the underserved through community programs for healthcare workers and patient advocates. Dr. Schapira championed the need to provide training in communication skills for oncology clinicians and developed innovative curricula that have been disseminated widely. In addition she participates actively at Harvard Medical School in various efforts designed to integrate cross-cultural care education into the coursework and clinical experience of medical students.
She is a senior investigator in a longitudinal study of young women with breast cancer in collaboration with colleagues at the Dana Farber Cancer Institute. Prior work addressed psychosocial needs of cancer patients and families, community interventions to reduce health disparities and communication skills training for cancer professionals. She has collaborated with both advocacy and professional organizations to design interventions that facilitate coping for patients with cancer and their families through information, guidance and improved communication. She is active on many national and international editorial boards, is a former member of the Board of Directors of the American Psychosocial Oncology Society, Editor-in-Chief of the American Society of Clinical Oncology’s website for the public: Cancer.Net, consultant editor of Journal of Clinical Oncology.