Literature shows that patients feel better when they have the opportunity to express emotional concerns and their physicians respond empathically. When patients feel heard and understood, they are also better prepared to engage in shared decisions and care planning involving their treatment options. Patients, clinicians, and other health care stakeholders must work together to balance the focus of clinical conversations on determining and addressing unmet needs and improving quality of life of patients and families right alongside treating the disease and any symptoms or side effects.
At the Rocky Mountain Conference on Dementia held in April 2019 by the Alzheimer’s Association, a participant shared what brought her to the conference. Her partner was recently diagnosed with early-onset Alzheimer disease (AD) and, as her caregiver, she was doing all she could to learn about the disease and how to be supportive of her loved one. She then shared that her partner, a scientist, had not talked about her condition with her employer or colleagues. She was afraid that others would see and treat her differently. When asked if the couple had raised this fear with her doctor, she said that they had not—confiding that they thought the doctor would not listen or know how to support them.
While this particular story involved someone with AD, there are many other stories similar to this one spanning various disease diagnoses. When people with cancer, rheumatoid arthritis, multiple sclerosis, and other serious illnesses talk about the source of their greatest distress as it pertains to their health care, it often has little to do with the disease itself. Stories range from concerns about not being able to work, to anxiety about not being there for their loved ones, to confusion about medical bills and mounting financial distress. Patients feel frustrated when they cannot get supportive responses to their most pressing questions or concerns, particularly if the clinical team expresses little regard for how these circumstances are interfering with the patient’s and family’s quality of life. There is a common thread throughout these patient stories. Patients feel as though their doctors did not really listen to them or understand the circumstances surrounding their lived experience with their disease. Many end their stories with this call: How can I get my doctors to listen to me?
Communication in Medical Culture
It is not just in anecdotes and personal narratives that this plea to be heard and understood is conveyed; the evidence supports it as well. Literature shows that patients feel better when they have the opportunity to express emotional concerns and their physicians respond empathically. Patients confronting unresolved concerns are more distressed than those who receive responsive support, and 90% of patients say they want to talk to their doctors about these issues.1,2 Yet, fewer than half of cancer patients tend to disclose their concerns to providers.3,4
Skilled communication is a major driver of high-quality care, particularly for patients with serious illness; however, most physicians receive little specialized training in developing person-centered communication competencies that emphasize treating the person beyond the disease. Medical culture conditions people—both patients and practitioners—to talk almost exclusively about their medical conditions. Physicians rarely initiate clinical conversations early enough in the illness trajectory to help identify their patients’ personalized goals, values, or preferences in the context of making treatment decisions and care plans.5,6 As a result, people coping with serious and chronic illnesses may receive interventions that do not match what they actually want.
Empowering and Supporting Patients
So how do we address this communication gap? Patients, clinicians, and other health care stakeholders must work together to balance the focus of clinical conversations on determining and addressing unmet needs and improving quality of life of patients and families right alongside treating the disease and any symptoms or side effects. While the communication issue we are facing is a systemic one that can shortchange optimal person-centered care delivery in all care settings and all specialties, the steps toward achieving a solution are straight forward: patients need the scaffolding and support to feel comfortable initiating conversations in their health care encounters about their goals, fears, concerns, and preferences. At the same time, health professionals must be receptive to these conversations and listen to what their patients and families have to say.
Fortunately, there are a number of communication support tools available that help give patients the words to use so they feel comfortable expressing what matters to them, particularly in the context of living with their condition. Many of these tools are specifically designed to support advance care planning, such as PREPARE, Five Wishes and, The Conversation Project.7-9 Innovative tools like Common Practice’s Hello, a conversation game, can help patients, families, and their care teams identify important quality-of-life preferences, prepare for and have meaningful conversations about personal priorities and preferences. A tool like this can help take the sting out of conversations that may otherwise feel uncomfortable and difficult.10 Knowing the answer to a question like, “What are three nonmedical facts I would want my doctor to know about me?” can be the right nudge for appreciating the patient as a person and gaining understanding about what the patient and family are hearing and understanding. Ultimately, these learned skills can strengthen the physician-patient relationship leading to healthier connections, patient trust, and shared decision-making that helps align treatments with patient values. These are the hallmarks of high-quality, person-centered care that patients deserve and practitioners strive to deliver.
The National Patient Advocate Foundation (NPAF) has recently launched a new campaign we are bringing to communities called “Can We Talk?” that will help build patient and caregiver confidence and skills to initiate conversations that will allow them to express their concerns and preferences with people involved in their health care—from their loved ones to members of their health care team.11 The goal of the campaign is to help improve connections between patients and health professionals through skilled conversations that foster shared decision-making that ensures the treatment plan is consistent with the patient’s values and preferences.
NPAF is using this campaign to empower patients and caregivers to speak up about their personal priorities and build an echo chamber of demand for person-centered care. In this era of value-based care, physicians and other health practitioners must also be active participants and take advantage of the resources and tools available to optimize clinical communication. For one, doctors can promote these conversations by asking patients directly about their concerns. When oncologists encourage their distressed patients to talk about their concerns and respond to emotions with empathy, they help relieve patient suffering and create an environment conducive to improved decision making, higher patient satisfaction, and better adherence.12
Guiding and Training Clinicians
Just as with any specialized medical skill, the ability to communicate and respond with empathy are learned skills that take training and mentored practice to master.13 Rigorous evaluations of communication skills teaching have shown positive results when interventions incorporate adult learning principles, practice, and feedback in settings supervised by trained facilitators.14-16 A leading communication skills training program, VITALtalk, involves a range of online and in-person communication curricula, including small group learning using role play and feedback, which demonstrated significant improvement in clinicians’ empathic communication behaviors.17,18
Science supports the need to integrate communication skills training into serious illness care.
Skills such as eliciting concerns, managing emotions, and demonstrating empathy have been shown to lead to increased physician self-confidence, reduced patient distress, higher patient satisfaction, and trust.19,20 The Communication Skills Pathfinder web portal is a tool specifically geared to all clinicians who care for patients living with serious illness.21 It was developed by a collaboration of three leading health care organizations: Ariadne Labs, the Center to Advance Palliative Care, and VITALtalk, with the purpose of connecting all clinicians to easily accessible, proven communication skills training.
Foundations for Trust
Effective communication is the foundation for trust in any relationship, so it makes sense that patients and physicians together should learn the skills needed to better communicate with one another. At the very least, patients want their doctors to listen to them. When patients feel heard and understood, they are better prepared to engage in shared decisions and care planning involving their treatment options. Imagine if the couple at the beginning shared their fears about the patient’s possible intellectual decline at work; perhaps they would feel more at ease knowing that the physician understood and considered this fear and then provided them with support leading to a stronger, more fulfilling relationship for everyone.
1. Detmar SB, Aaronson NK, Wever LD, Muller M, Schornagel JH. How are you feeling? Who wants to know? Patients’ and oncologists’ preferences for discussing health-related quality-of-life issues. J Clin Oncol. 2000;18(18):3295-3301.
2. Wenrich MD, Curtis JR, Shannon SE, Carline JD, Ambrozy DM, Ramsey PG. Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death. Arch Intern Med. 2001;161(6):868-874.
3. Maguire P. Improving communication with cancer patients. Eur J Cancer. 1999;
4. Heaven CM, Maguire P. Disclosure of concerns by hospice patients and their identification by nurses. Palliat Med. 1997;11(4):283-290.
5. Emanuel LL, Barry MJ, Stoeckle JD, Ettelson LM, Emanuel EJ. Advance directives for medical care--a case for greater use. N Engl J Med. 1991;324(13):889-895.
6. Tulsky JA, Fischer GS, Rose MR, Arnold RM. Opening the black box: how do physicians communicate about advance directives? Ann Intern Med. 1998;129(6):
7. The Regents of the University of California. PREPARE for your care. prepareforyourcare.org website. https://prepareforyourcare.org/welcome. Accessed May 30, 2019.
8. Aging with Dignity. Five Wishes. fivewishes.org website. https://fivewishes.org/.
Accessed May 30, 2019.
9. The Conversation Project. theconversationproject.org website. https://www.theconversationproject.org/. Accessed May 30, 2019.
10. Common Practice. https://commonpractice.com/. Accessed May 30, 2019.
11. National Patient Advocate Foundation. Can We Talk? npaf.org website. https://www.npaf.org/can-we-talk/. Accessed May 30, 2019.
12. Mager WM, Andrykowski MA. Communication in the cancer ‘bad news’ consultation: patient perceptions and psychological adjustment. Psychooncology. 2002;11(1):35-46.
13. Back A, Arnold R, Tulsky J. Mastering Communication with Seriously Ill Patients: Balancing Honesty with Empathy and Hope. Cambridge, UK: Cambridge University Press; 2009.
14. Roter DL, Hall JA, Kern DE, Barker LR, Cole KA, Roca RP. Improving physicians’ interviewing skills and reducing patients’ emotional distress. A randomized clinical trial. Arch Intern Med. 1995;155(17):1877-1884.
15. Levinson W, Roter D. The effects of two continuing medical education programs on communication skills of practicing primary care physicians. J Gen Intern Med. 1993;8(6):318-324.
16. Baile WF, Kudelka AP, Beale EA, et al. Communication skills training in oncology. Description and preliminary outcomes of workshops on breaking bad news and managing patient reactions to illness. Cancer. 1999;86(5):887-897.
17. Back AL, Arnold RM, Tulsky JA, Baile WF, Fryer-Edwards KA. Teaching communication skills to medical oncology fellows. J Clin Oncol. 2003;21(12):2433-2436.
18. Back AL, Arnold RM, Baile WF, et al. Efficacy of communication skills training for giving bad news and discussing transitions to palliative care. Arch Intern Med. 2007;167(5):453-460.
19. Committee on Improving the Quality of Cancer Care: Addressing the Challenges of an Aging Population; Board on Health Care Services; Institute of Medicine; Levit L, Balogh E, Nass S, et al, eds. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: National Academies Press; 2013.
20. Committee on Approaching Death: Addressing Key End of Life Issues; Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: National Academies Press; 2015.
21. Ariadne Labs; Center to Advance Palliative Care; VitalTalk. Communication Skills Pathfinder. communication-skills-pathfinder.org website. https://communication-skills-pathfinder.org/about/who-we-are/. Accessed May 30, 2019.