CARE NOT CURE: DIALOGUES AT THE TRANSITION
Gordon Geoffrey H.
(Oregon Health & Science University, USA)
Symposium on Consumer/Provider Communication Research
National Cancer Institute
September 14-15, 2001
Gordon, G.H. (2003). Care not cure: Dialogues at the transition. Patient Education and Counseling, 50: 1, pp.95-98.
People living with serious progressive disease face multiple communication challenges including receiving the diagnosis, choosing and starting treatment, modifying treatment in response to failure or disease progression, and arranging end of life care. However, few guidelines exist to help clinicians talk with patients and families when the burdens or risks of treatment outweigh the benefits, and the focus of care shifts from prolonging survival to improving quality of life (1,2). This conversation may take place over several encounters until the patient, family, and medical team are all in agreement regarding the goals, methods, and expected results of treatment.
The goal of this article is to highlight some challenges to effective communication at transitions to palliative care, review communication skills training for physicians, and raise questions for further research.
2. Communication challenges at the transition
Conversations about care when treatment fails to cure or control the disease can be extraordinarily difficult for doctors, patients, and families. Immediate and urgent issues for communication include 1) prognostic uncertainty ("How much time do I have?"), 2) death and dying ("Where and how will I die?"), and 3) the definition of hope ("I can't lose hope - but what am I hoping for?"). Discussing prognostic uncertainty is problematic because physicians: 1) have trouble estimating when a patient will die (3); 2) give a falsely optimistic prognosis to dying patients (4); and 3) introduce bias when explaining probabilities (5,6). Our culture has made dying a medical problem rather than a natural event, but our current medical education and delivery system is not prepared to handle end of life care (7-9). Finally, physicians define hope in terms of disease response or improved survival and experience treatment failure as "taking away the patient's hope." In fact, patients find new objects and sources of hope as disease progresses, and lose hope when they feel abandoned or isolated ("there is nothing more we can do for you") or when they suspect their doctors or families are withholding information (10-13).
In an ideal transition scenario the physician: 1) asks what the patient understands about the nature and extent of the disease and the goals and results of treatment; 2) allows the patient to express feelings; and 3) asks about specific concerns such as anticipated physical symptoms, loss of function, mood changes, or impact on the family (14,15). The physician explicitly acknowledges that the disease is progressing despite all available and appropriate treatment, and expresses the wish that things were different (16). The physician then reassures the patient that care will continue, with the aim of clarifying and achieving their hopes and goals within the constraints of progressive disease. The physician and medical team shift attention and language away from the disease process and toward relief of suffering and maintaining function (2). Finally, the physician and team might reflect, individually or together, on their reactions to the treatment failure and how it affects their roles and relationships with the patient, family, and each other (17,18).
3. Communication skills training for physicians
Communication skills are linked to important outcomes such as greater satisfaction (patient and physician), greater patient understanding and acceptance of treatment plans, reduced patient distress, and fewer lawsuits (19,20). Interventions to improve physician-patient communication improve patient outcomes in hypertension, diabetes, and post-operative recovery (21-23). In oncology, benefits of effective communication include improved patient coping, quality of life, and distress, and reduced clinician fatigue, emotional exhaustion, and burnout (24,25).
Common communication deficiencies include interrupting patients early in the encounter (26,27), failing to elicit the full range of patient concerns (26,28), missing opportunities to express understanding of the patient's ideas and feelings (29,30), and minimizing the patient's role in treatment planning (31,32). However, communication skills can be taught, learned, and maintained for physicians at all levels of training (33-38), including skills for giving bad news (39-41). Workshops for practicing oncologists can improve self-rated communication skills (41) as well as skills with simulated (42) and actual (43) patients. These latter workshops include essential elements of skills-based learning such as 1) a supportive learning climate, 2) negotiated goals with the learner, 3) clear description and demonstration of the desired skills, 4) practice with observation and feedback, 5) periodic review and application of the skills to situations of increasing complexity, and 6) opportunities for personal reflection on one's experiences as a learner and clinician (43-44).
4. Communication skills at the transition: areas for research
4.1.1 What is the "dose-response" effect for communication skills training?
What kind of teaching, for how long, is optimal for improving clinicians' communication skills? Medical student and resident programs last 2-4 hours; residential workshops for practitioners last 2-3 days. Workshops of several sessions followed by ongoing coaching may be more effective than single training events. We need to know more about the optimal "dose" (amount and frequency) of teaching, the impact of "boosters" to revisit and reinforce learning, and appropriate "responses" or outcome measures for learners at different levels of expertise.
4.1.2. What is the best method of delivering communication skills training?
The knowledge base and concepts underlying communication skills can be presented in writing, lecture, or on line. However, communication skills are best learned through practice with direct observation and feedback. Some faculty training may be necessary, since faculty who teach communication vary widely in the issues they identify and teach about (45).
4.1.3. How do you measure success of teaching?
Success has many levels including acquiring a skill, using it in practice, and affecting patient outcome. A variety of communication skill assessment instruments are available but only a few have been studied extensively (46). Currently there is no "gold standard" measure that is widely accepted and applicable across a wide spectrum of clinical encounters. Communication skills and impact of training may be best assessed in a 360 degree fashion with ratings by self, patients (real or simulated), and observers (faculty, staff, peers) (47).
4.2.1. What is the best way to discuss prognostic uncertainty with patients?
Traditionally, physicians view disclosing uncertainty as potentially damaging to the doctor-patient relationship. However, empirical studies refute this (48). Aids to shared decisions in cancer and other areas are available but not widely used (49). Qualitative analysis of comments by individual physicians and patients as they review videotapes of actual decision-making conversations could provide new directions for research.
4.3.1. What is the relative importance of system effect versus training effect in changing physician behavior?
The SUPPORT study indicated that there is a limit to the effectiveness of physician-patient communication skills training on practice habits in end of life care (7). Determining the relative impact of changes in leadership, policies, resources, and training on the quality of end of life care is an important research area (50).
4.3.2. What are the characteristics of physicians who obtain additional training in communication skills? What are the characteristics of systems that encourage or mandate this training?
Physicians who voluntarily enroll in 2-5 day communication skills training programs are usually already aware of the importance of these skills to their work. Some have additional interests in psychosocial medicine, or in experiential, interactive teaching methods. Physicians enrolling in workshops on specific topics (for example, taking a sexual history or giving bad news) want practical tips and updates because they encounter the problem frequently, or find it interesting or difficult. Health care systems that encourage or mandate communication skills training want to maintain high patient satisfaction scores to retain patients in the system and to reduce malpractice risk.
Medical educators are implementing competency-based assessment and certification of individuals and training programs, including communication and interpersonal skills (73). At the same time, health care organizations increasingly view communication as an essential element of patient safety and quality of care (51). These initiatives will provide new opportunities for collaborative research on patient-centered and systems-based teaching and practice, including communication around management of cancer and other serious progressive disease (52).
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Text in Word
Geoffrey H. Gordon,
Division of General Medicine & Geriatrics
Oregon Health & Science University L475
Portland, OR 97201
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