Humanizing Cancer Care: The Patient Perspective
The buzzword of this decade has been “patient-centered care.” It is the driving force behind oncology practice reform and any performance payment goals. But what does patient-centered care mean for patients?
At the recent ACCC National Oncology Conference in October 2017, Brianne Joseph, LPI, brought the audience to their feet with a compelling message for those involved in cancer care. Ms Joseph, a breast cancer survivor and award-winning author of Punk Azz Cancer, How Dare You!, shared her experience with the audience, focusing on what to say—or not to say—to patients with cancer during their cancer journey.
She listed tips for communicating compassionately and effectively with patients, and underlined the importance of using layman’s language and consensus decision-making. Ms Joseph brought to life what survivorship looks like from the survivor’s perspective, and the relationships that patients wish to have with their providers after their treatment ends.
According to the Institute of Medicine, patient-centered care is “providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions.”1 It is the practice of caring for patients in ways that are meaningful and valuable to the individual patient.
Ms Joseph provided 3 definitions of what is valuable to patients with cancer, including (1) reducing “the overwhelming,” (2) providing emotional support, and (3) using meaningful communication.
Compassion Is Key
Ms Joseph asked practices to be human first, to be compassionate, to use plain English when speaking to patients, and to truly listen to patients’ concerns.
“Our concerns may not be cancer-related, but we don’t know that (ie, a symptom or worry of a potential issue, like perhaps being lightheaded); listen completely to what we are asking, and then answer our question. We are worried that the cancer is going to turn up somewhere else, and a symptom may be related to that.”
She shared many stories from real patients, such as Anais R., who said, “My gynecologist said to me the words, ‘You have breast cancer,’ but didn’t say anything reassuring afterward like, ‘You know, nowadays there are great treatments for breast cancer, and most of them don’t come back,’ or something similar. When I heard those words, I thought I was going to die, and no one told me the contrary.”
Ms Joseph also recounted Stephanie Jung’s story, which probably resonated with every member of the audience. As reported by Ms Joseph, Ms Jung said, “All physicians, nurses, and reception staff need to realize how many doctors and appointments patients with cancer have to manage. It is very overwhelming in the beginning to juggle calls, paperwork, referrals, disability, work transitions, and diagnosis information, let alone my own emotions, and those of my loved ones. I will always remember getting a rude response from a receptionist when I asked for the location of their office. She said, ‘You were just here last week!’ What she didn’t realize is that I had been to 6 or 7 other appointments, and had a major surgery since then. Pardon me if I don’t remember which floor of the hospital annex she was on.”
Ms Joseph also listed the following practical tips to providers when talking to patients with cancer:
- Acknowledge the shock
- Hug us and let us cry
- Give us an outlet for the moment
- Reassure us that things will be fine.
Specific suggestions providers should convey to patients who are just learning of their cancer diagnosis include bringing not only a family member or friend, but also a tape recorder to appointments, to capture details that may get lost in the emotion.
What to Say, and What Not to Say
- Don’t say, “This will all be just a memory at this time next year”—it lasts
- Don’t ask, “How are you feeling today?” (The knee-jerk answer will be “Fine.”) “Instead say, ‘Tell me how you’ve felt this week, month, etc.’ Or, ‘Tell me what symptoms or side effects you have been concerned about.’ We want to hear if what we are experiencing is normal, and what to expect going forward”
- “Don’t tell us we have cancer over the phone. We will be confused, worried, and maybe alone”
- “Don’t tell us that this is the best kind of cancer to get. No kind of cancer is the best kind to get.”
How can providers help patients? Providers should consider the psychological impact that cancer has on patients and on their body image, suggested Ms Joseph. In addition, providers should consider the long-term side effects, the impact of cancer diagnosis, treatments, patients’ quality of life, and their body image after treatment, added Ms Joseph. As a breast cancer survivor, she focused on her experience with breast cancer.
The Young Survival Coalition (YSC) is a premier organization dedicated to addressing important issues of young women who are diagnosed with breast cancer.
Ms Joseph became involved with YSC and set up local chapters. In addition, she found that access to therapists and group counseling, information about intimacy after breast cancer, and referrals to support sites such as “Sexy After Cancer” were paramount in her recovery. Her advice to providers concluded with 2 points:
- Use layman’s terms
Break it down in plain English. Ms Joseph recounted Shari S.’s story about her oncologist, who only sees new patients at the end of the day, so she could spend as much time with them as necessary to speak with them. Shari had a 2-hour appointment and left at 7 pm on a Friday. “This is a dedicated and considerate doctor. I am trusting her with my life,” said Shari.
- Listen. Really listen
Ms Joseph shared Amanda Frazier’s story. Ms Frazier said, “I know my body better than anyone, so if I tell you something isn’t right, or this makes me feel that way, please…just listen.”
Put Yourself in the Patient’s Shoes
Ms Joseph recommended the book Attending: Medicine, Mindfulness, and Humanity, by Ronald M. Epstein, MD, to remind physicians and their staff to practice mindful attention, and to use their sense of curiosity to better interact with patients. In the book, Dr Epstein advises physicians to speak and think with a beginner’s mind—to remember that their understanding of a case may lead to self-confidence that can get in the way of good care, and to remember that their presence itself can be comforting. Listening and staying in the room can help patients feel acknowledged and understood.
Furthermore, cancer care doesn’t end after treatment; life goes on for the staff, but the patient can feel abandoned, reminded Ms Joseph. Part of the message of her book, Punk Azz Cancer, How Dare You!, brings back the feeling of power and control to patients with cancer.
Ms Joseph brought a strong sense of what it is like to be on the other side of the diagnosis. As we move forward into value-based models, and struggle with patient engagement, her messages are simple but well-directed.
Ms Joseph can be reached at email@example.com or via www.briannejoseph.com.
- Committee on Quality of Health Care in America, Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press; 2001.