Every branch of the spreading oak of precision medicine unfurls leaves of new possibilities for diagnostic and therapeutic discovery. Enlightened research pushes through boundaries of understanding molecular mutations, triggers and switches; identification of biomarkers and drug targets; DNA alterations and repairs; gene editing; immunology; proton therapy, and on and on. The result is a public perception of “medical miracles” happening every day.
But not every patient fits into the “miracle” category, and not every acorn falls from the tree of discovery with curative fruit. So health care providers must deliver to patients both reassuring, hopeful news as well as the stinging variety barbed with dreaded diagnoses, poor prognoses, impending loss of health, diminished quality of life, and even a foretelling of death itself. There are also tough conversations that fall between the extremes—for example, those that broach the possibilities of disease- or therapy-induced fertility or sexual dysfunction.
Katherine Puckett, PhD, MS, MSW, LCSW, Director of Mind-Body Medicine, Cancer Treatment Centers of America at Midwestern Regional Center, Zion, Ill., has had extensive experience in helping patients and their caregivers cope after receiving difficult news. Furthermore, she explained that “breaking bad” cuts in two directions.
“Most clinicians I've spoken with are interested in any pointers to make it go more smoothly; it often comes up. It must be remembered that all of the pain does not fall on the patient; clinicians are humans with feelings, too, and it can make clinicians extremely sad to be in a position to deliver hard news. Because physicians are trained to save, it is draining and demoralizing for them to tell someone, ‘We can't cure you.’ Granted, they can commonly give people more time, or better quality of time, but they can't always cure a disease. That is hard for people whose own lives are devoted to saving the lives of others.”
It's a fact that wasn't lost on organizers of the BeCOn (Building Excellence and Continuity in Oncology) Summit, hosted by Teva Pharmaceuticals in Barcelona last spring.
“Teva wanted to create a conference program that complemented the ‘scientific’ skills to focus on the importance of ‘emotional intelligence,’” said Paul Harmon, Head of Oncology Care and Transplant Europe, Teva Pharmaceuticals. “This was the third BeCOn conference Teva has hosted. At our previous conferences, attendees gave us clear feedback they were looking for more support in how to have difficult cancer conversations. Also, earlier market research had indicated nine out of 10 oncologists have received no formal training in breaking bad news to patients. And, on average, oncologists have between 150,000 and 200,000 consultations during their careers. So we feel we've identified a need—an area for physicians for which we can provide some real value and support when having those difficult conversations.”
Don Dizon, MD, FACP, Head of Women's Cancers at Lifespan Cancer Institute, Director of Medical Oncology at Rhode Island Hospital, Associate Professor of Medicine at Warren Alpert Medical School of Brown University, and a BeCON presenter, spoke to Oncology Times after the event. “I tell my colleagues that the time to prepare patients for something they don't want to hear is at the very beginning of their relationship—even before tests have been run and before any bad news is known. It's an essential part of building trust,” he offered. “I often tell patients, ‘We will go for a cure’ if I think that is truly possible. But I also say to everyone, ‘If I feel I cannot help you or if I feel cancer is progressing so that treatment is no longer effective, I will be the one to tell you; I will tell you when it's time.’ When patients know a provider will be honest, they are probably more comfortable sharing their preferences on how they would like to get bad news, and to do so in advance—well before that moment comes.”
Dizon said some patients tell him up front that they never want specifics or details; they simply want him to give them hope. “There is this idea that you will either give them bad news and it will be devastating, or you will give them good news that is hopeful. But there is always room for hope, even when delivering bad news. Just having that preface is important for a longitudinal relationship.”
Marisa Weiss, MD, has been on the receiving end of bad news. A breast radiation oncologist, she is also a breast cancer survivor and founder and chief medical officer of the non-profit, Breastcancer.org. Sharing her perspective on the bad news conundrum, Weiss said, “For sure, there is no ‘one size fits all’ when it comes to sharing bad news with any individual. The best way to deliver any bad news is to first establish or enhance your bond with the patient by listening, showing respect, and being sensitive to each person's situation. The amount and type of information needs to be tailored to their understanding of their medical situation, their style of making decisions, their ability to handle the news, and their support network—or lack thereof.”
Weiss said she typically begins the conversation by acknowledging the hard work a patient already may have done to get to this point, asking what the patient's understanding of the medical situation is at this time, and then asking, “How can I be most helpful to you today?”
“After this preliminary conversation, you will have a much better idea of what to say and how to say it. Incremental release of information, with touchpoints in-between, is usually most effective and therapeutic,” said Weiss. “It is also very important to put the present ‘bad news’ into the context of the patient's full life view. Remind the patient, ‘This is a hurdle we need to get over together, all with the goal of overcoming the challenge and getting you back into your regular life, even if it has new twists and turns to it.’ Providing this context provides motivation and hope to get through testing and sticking with the treatment plan.”
Puckett would have clinicians remember that, while it is good to have a go-to strategy for tough talks, they should try to get to know their patients so they will know how to present information in the most effective way for that individual.
“That applies to every conversation that we have with patients. Personalized medicine goes right down to the core of these discussions,” she commented. “Part of what I recommend going into these discussions is reacting to what patients need and want. Get to know a patient as a whole person—mind, body, and spirit. It's not just the medical piece that is important. Different patients have different preferences for what they want to know and how they want to know it. One patient I spoke to did not want to know lab or test results. She found it helped her to remain optimistic if she didn't know that her counts changed negatively.”
Ronald Epstein, MD, Professor of Family Medicine, Psychiatry & Oncology at the University of Rochester Medical Center, studies ways to improve communication between clinicians, patients, and their families. He has received awards for his work in health care communication, including the Lynn Payer Award from the American Academy on Communication in Healthcare for lifetime achievement in research on communication and health. He recently published a book, Attending – Medicine, Mindfulness, and Humanity, focusing on mindfulness and how medical professionals can use it to provide higher-quality care.
Epstein would assure clinicians that there is good reason for their concern over tough conversations. “There is no way to give very bad news without inflicting some pain. If you give it directly, it hurts. Likewise, if you sugar coat it, it hurts,” he said, realistically. “So it really becomes an issue of how to do it most compassionately.”
He said the first order of business is for clinicians to determine their own state of mind as they enter the conversation. “Look inside yourself—are you distressed, disturbed, feeling guilty? Do you feel you may have missed something? Or are you feeling distant and disconnected? This introspection allows you to calibrate and fine-tune the moment so that you are not spending energy focusing on yourself, but instead are fully directing your efforts toward patients' needs.” Additionally, consider your countenance before entering a patient room. Will the look on your face deliver the news before you even open your mouth? Practice neutral body language and facial expression before a consultation begins.
The next critical step, said Epstein, is all about timing. “When you first see the patient, establish a warm connection and ask, ‘How are things going today?’ A patient may respond, ‘I'm worried.’ A good next response might be, ‘Yes, I can really understand that you are worried; we have all been thinking about this. I do have the results of the biopsy. Is this a good time to talk about it?’ The fact that you are asking permission gives a patient some much-needed control over the moment. And it serves as a subtle way of signaling that this may not be easy—because clearly if the news was going to be good it already would have been announced.”
The third step, according to Epstein, is to give the news as simply as possible. “Make the initial statement simple, and truthful. If a cancer has spread, you might say, ‘I wish it were otherwise, but it looks like the cancer has spread.’ The ‘wish’ expressed is a positive—it allows the patient to know he is not alone in this and has a partner in the experience. It is also doing another important thing: putting the human factor first, before the clinical. The person you are addressing is a human being first, and only secondarily a patient.”
He also suggested integrating moments of silence to allow the parsing of news to be absorbed, or to allow for questions. And should a patient ask, “What does this mean? How long do I have?” Epstein recommended saying, “I will get to that question in just a moment, but first I need to explain more about what is going on...”
Epstein said, “This is not being evasive to the patient, but instead is being sensitive to timing. This is a necessary step because if you immediately tell patients ‘... the median survival is 4 months, give or take a few months...’ they don't hear anything else you say. Essentially, they shut down.”
When it is time, however, to give the news, Epstein said he would approach it by finding whatever positives there might be. For example, “You do have kidney cancer and the primary tumor is large. But there is only one metastasis, and in cases where there are more, the situation would be dire. Because of that, even though the median survival for kidney cancer is 9-12 months, in your case it might be a bit longer. And I will do everything in my power to help you live as long as possible.”
Epstein added, “It's a matter of trying to gain a balance between the positive and the negative. You notice I would not say, ‘I am sure you will survive much longer,’ but instead express my dedication to help the patient do as well as possible and explain reality, as well as a possibility for hope.”
Positivity in Proactivity
Radiation oncologist Wendla Citron, MD, Medical Director of the University of Maryland Baltimore Washington Medical Center's Tate Cancer Center in Glen Burnie, Md., part of the University of Maryland Cancer Network, and Assistant Professor at the University of Maryland School of Medicine, also ascribes to finding avenues of positivity amidst any firestorm of bad news.
“A diagnosis of cancer is understandably overwhelming and often comes as a shock ... I summarize why certain tests were performed and what we have learned from the results. I also take time to explain what we don't know yet, including any further testing that may be required and why. Patients often have trouble absorbing all of the new information, in part because of medical complexities and in part due to emotional distress. So asking if explanations make sense, if there are any questions, and repetition are important to confirm understanding,” said Citron.
With basics covered, Citron said she switches gears to proactivity and the formulation of a treatment plan. “Engaging the patient in decision-making empowers them and helps direct attention and energy to what we can actually do. I do my best to teach patients and their families about their disease and the recommended treatment, and why one treatment regimen may be preferred over others.”
Because patients' anxiety is often lessened by learning what to expect and what can be done to manage symptoms that may arise, Citron recommended devoting ample time to discuss the logistics and potential side effects of therapy.
“I discuss the goals of therapy, whether it is to achieve cure or to alleviate a particular symptom, as well as how we will know if we reached that goal and how long it might take, so that expectations are realistic,” she detailed. “I then ask, yet again, what questions patients and families have. I typically acknowledge how overwhelming a diagnosis of cancer is and how much new information I have asked them to absorb. Some patients choose to discuss their worries with me at this point, and some do not, but I try to allow time to listen. Lastly, I break down our treatment plan into steps in an effort to help them feel that this obstacle is not insurmountable. Hopefully, education and a clear plan are helpful in relieving fears and anxiety.”
Puckett, too, stressed that success in the eyes of patients take many forms. “Explore that,” she suggested. “Some people want aggressive care because they want every day of life that is possible, while others want shorter, high-quality time. And that may be something we can offer; it may be a realistic success. But you won't know that unless you discover every patient's truth. Let the patient be the driver.”
A Patient's Viewpoint
Unfortunately, not every clinician has learned the lessons that experts described. It is a point driven home by Joel Nowak, MA, MSW, who himself has been diagnosed with five primary cancers (thyroid, prostate, renal, melanoma, and extremely rare appendiceal cancers) and one recurrent metastatic (prostate) cancer in the past 30 years.
Now a patient advocate, author, educator, and self-described “cancer thriver,” Nowak is also Executive Director of Cancer ABCs (www.cancerabcs.org). “I've had bad news delivered to me more times than I care to remember,” he said speaking by phone from his New York City home. He recalled a particularly disturbing “bad news” conference 2 years ago on the discovery of his appendiceal cancer.
“I had had an appendectomy and being a fairly well-educated patient by then, having had experience of other cancers, I understood the importance of my medical records and test results. So after surgery, and before my 2-week follow-up appointment to surgery, I obtained a copy of my pathology and read in it that I have appendiceal cancer. I learned the tumor was very large—10 cm, about as large as the appendix itself, which had been ready to burst. The pathology report said the cancer was at the very margin of the appendix, ready to go through the appendix wall, which could allow it to spread. When I went back for my 2-week appointment, I was really furious. The doctor walked in with file in hand, sat down, and said, ‘Here is your pathology report. You have cancer.’ Angrily I said, ‘It's about time you told me. You've allowed me to waste 2 weeks. Could that make a difference in my survival? You can't tell me that because you don't really know.’”
Nowak recalled that the doctor was shocked. “But in today's world with so much access, so many portals to medical records, this sort of thing is bound to happen. Patients may find out bad news even sooner than their doctors. This is something of which doctors need to be aware: as people become more sophisticated using portals, docs must report more quickly.”
Asked how he would want fellow cancer patients to be treated, Nowak had no hesitation in answering.
“There can be no rules or right or wrong, because every person is different. Every person has a different disease, needs, wants, stage of life, aspirations, levels of understanding. Taking that significant complexity and adding cancer to it—which again is all very different in terms of prognosis and treatment options—makes this a very difficult prospect,” he said with knowledge drawn of his own profound experience.
“When you tell a patient, ‘You have cancer,’ you are killing something within the patient at that moment. And the patient has to go through mourning just as surely as if they had lost a loved one. They may mourn loss of health, loss of normal life, loss of sexuality. For patients, having cancer means there's a new normal in your life: doctors, appointments, treatments, side effects—and it all happens in a language that is not their own, medical terms that are not always understood. It's a new world about which patients have very limited understanding.”
Nowak agreed that information is best parsed in small sound bites, with time for questions and learning in-between. And he encouraged clinicians to use the actual word cancer.
“Don't be afraid to say it. I have worked with people who had been told they have leukemia or melanoma and never understood it was cancer. One woman—not well-educated—was told she had leukemia and she thought it was like anemia. She was sent to see a hematologist at Memorial Sloan Kettering, which she had never heard of before. When she got there, she asked, ‘What kind of hospital is this?’ And when the doctor said, ‘It's a cancer hospital’ the patient asked, “Then why am I here?'”
Nowak said, even in the earliest testing phases, it is wise to introduce the possibility of cancer to give patients time to acclimate. “I do not mean to do it in a way that would cause fear, but rather in a way to simply make that word approachable. For example, ‘You have a lump there. Let's do a test to rule out cancer and see how best to treat this.’ That can lay an important groundwork to avoid shock and surprise down the road,” he said.
As for physicians' feelings, Nowak said they are appropriate. “I know it is hard for doctors to tell patients they have cancer, but the day that it's not, they should find a new practice. Otherwise, they need to put aside their own level of discomfort and simply concentrate on their patients.”
Embracing Social Media
Part of the overall discussion at the spring BeCOn summit honed in on the emerging importance of social media in the realm of patient information delivery. One of the conference presenters, Hungarian Bertalan Mesko, MD, PhD, a self-described “medical futurist and medical geek,” spoke on preparing for the digital technology revolution and predicted that “... all the repetitive parts of the clinician's role will eventually be taken care of by technology. The remainder will be why we became doctors—to care for patients.” He believes the clinician's role will change to one of “providing orientation through the jungle of digital information.”
Mesko warned that health care providers are ill-prepared to embrace new and emerging technologies for patients and medicine, with only a handful of digital literacy courses being taught in medical schools worldwide. In this era of the empowered patient, Mesko emphasized that health care must catch up or it risks being left behind, with potentially damaging implications for the doctor/patient relationship.
“We need health care professionals who still think that the human touch is the key essence of providing care, but who also know how to use disruptive technologies,” he said via a news release. “We are social beings—we need people to tell us that it's going to be alright and what is the best decision in this treatment or prevention.” But because emerging generations are turning to the internet for increased understanding, “... medical training must be improved, combining digital and health literacy to prepare a generation of physicians who are open to technology and innovation,” declared Mesko.
Dizon also advised that social media must be embraced to ensure best patient outcomes.
“Oncology patients want online engagement. A poll taken during the BeCOn Summit revealed that over half (52%) of oncology health care professionals were not using social media to interact with patients. But if you don't use social media, the conversations taking place online are going on without you,” he warned. “Patient-centered care is the mantra—we want to focus our efforts on what patients want and what patients need. Social media will allow you to find out exactly what that means.”
He went on to explain that after bad news is delivered, “... social media can give patients an extra layer of support that is not dependent on their clinical team or their doctor/patient relationship specifically. They can go online and connect with a community that will probably understand, in a more objective way, what they are experiencing.”
Dizon said he and his colleagues have considered the creation of a “social media prescription” to help patients best connect online. “It's a nice idea; a ‘social media prescription’ would mean clinicians counsel patients on the thoughtful communities that we ourselves are aware of and can point them toward. For it to work in concept, clinicians themselves have to be comfortable on social media.”
Pointing to well-established Twitter and Facebook communities that focus on various cancers, Dizon said, “It's not enough to tell a patient, ‘Go on Facebook.’ Rather, a clinician should find out what online platforms a patient is comfortable with and suggest appropriate outlets on that platform. Discover where their exposure is and work with them within the confines of their favored social media community. This also can help to keep a newly-diagnosed patient from going to a website about advanced metastatic disease that has little to do with them. It terrifies them. They need to be directed to an online community that fits their own cancer trajectory at that given moment.”
A Final Thought
Research is waging a tremendous war against cancer. Clinicians are at the front lines, carrying the defining banners into the battle, while patients are the foot soldiers doing hand-to-hand combat. Just when it seems all is lost, new discoveries in targets, therapies, drugs, and more come galloping from the rear to reinforce the weakened troops. And still, too many are lost on the field. Those who remain are often clinicians, weary from the endless fray.
“We must encourage clinicians to practice good self-care,” said Puckett earnestly. “This environment can be tough; giving hard news can be very challenging.
“Our medical community is so focused on other people—day after day, week after week, month after month. After having one of these tough conversations, clinicians need to take a deep breath and get re-centered,” Puckett advised. “They need to find support and debrief, if only between patients for a minute or two. Don't hold it all in and pretend that it doesn't hurt when it does. Clinicians do not have to be stoic. This is never ‘routine.’ Be real and compassionate with patients, but be real and kind to yourself as well.”
Valerie Neff Newitt is a contributing writer.
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Understanding Patients' Reactions to Bad News
Belong is a free cancer treatment optimization app aimed at helping patients and their support networks better manage their treatment journeys and improve overall quality of life through a proprietary Big Data platform and machine learning technologies.
With thousands of users, Belong houses hundreds of messages and questions users post to each other as well as to the 40 health professionals on the app who answer their questions.
Belong's CEO and founder, Eliran Malki, said data gathered on Belong has identified three distinct patient characteristics—proactive, knowledge-driven, and passive—and stressed personalized care is not just about choosing the right type of treatment for patients based on genetics or other clinical parameters. “It is also about understanding a patient's character and personalizing care accordingly,” he claimed.
“One patient/user, ‘Anya,’ has metastatic breast cancer and is one of the first mentors to join the Belong app,” Malki said. “She shared a story about a doctor's visit she attended 3 years ago. The physician told her: ‘You have just a few weeks to live. There is nothing more to do. Spend the time you have left with your husband and children.’ It was a brutally honest statement that would have broken most people. But it transformed Anya into a resolved fighter. Anya is one of the 20 percent of cancer patients classified as ‘proactive patients.’”
Malki explained, “Proactive patients doubt everything they are told. They are constantly collecting information and considering alternatives. They look for second and third opinions and have knowledge about new and relevant treatments. They also have a higher tendency to change and explore different treatments. Bad news does not necessarily discourage them; it often drives them into action.”
Forty percent of patients are classified as knowledge-driven patients, according to Malki's data. He told Oncology Times these are patients who want to get as much information as possible about the stage they are in, understand it and the time it would take get through it. They constantly collect information so they can make more informed decisions.
“Knowledge-driven patients are most sensitive to empathy and the detail and quality of the explanations they get regarding their treatment and treatment options. These two parameters hold a decisive impact on their quality of life and sometimes even their survival time,” detailed Malki.
Finally, the remaining 40 percent are classified as passive patients. They tend to accept what they are told by their physicians as the absolute truth. “They don't ask questions, they don't doubt and they follow what they are told,” said Malki. “Our data suggests these patients give up when they sense their physicians may have given up on them.”
Another user on Belong posted: “My mother was diagnosed with cervical cancer and a 4-inch tumor. At our last visit, the doctor was impatient, indifferent, and lacked empathy in a major way ... after the visit Mother's speech got slower and less audible and she is complaining of pain in her shoulder...”
Malki made the point, “Passive patients are the most sensitive to the manner in which they receive difficult news. For them, empathy and optimism are decisive when it comes to their treatment journey.”
He also said his data reveals users tend to evaluate physicians professionalism based on three factors: empathy; their ability to educate and communicate information; and projected subject matter experience. “Belong's data suggests physicians who show empathy and dedicate time to provide detailed explanations are rated as significantly more professional,” Malki noted.