CARE NOT CURE: DIALOGUES AT THE TRANSITION
Symposium on Consumer/Provider Communication Research
National Cancer Institute
September 14-15, 2001
Bethesda, MD
Geoffrey H. Gordon, M.D., F.A.C.P.
Division of General Medicine & Geriatrics
Oregon Health & Science University L475
Portland, OR 97201
Phone
503-494-3317
FAX
503-494-0979
Email
gordong@ohsu.edu
Gordon, G.H. (2003). Care not cure: Dialogues at the transition.
Patient Education and Counseling, 50: 1, pp.95-98.
1. Introduction
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 (2123). 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. Teaching
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. Practice
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. Systems
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.
5. Conclusion
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 systemsbased teaching and practice, including communication around management
of cancer and other serious progressive disease (52).
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