Compassionomics

  More recently, researchers have made another very interesting discovery. Many other forms of psychological trauma (besides combat) can result in PTSD. For example, it is now well established that people who experience life-threatening medical emergencies and critical illness can also develop PTSD symptoms.188, 189, 190 It’s quite common.

  This explains, at least in part, why people who go through serious illnesses can have deep, lasting psychological trauma from their experience. You may know someone who went through a serious medical crisis and, even though they eventually recovered from a physical standpoint, they were never quite the same from a psychological standpoint.

  This is now an area of intense research focus for two researchers from Cooper University Health Care and Cooper Medical School of Rowan University. Dr. Brian W. Roberts, an emergency physician and NIH-funded clinical researcher, studies resuscitation, the science of essentially bringing patients back to life after their heart stops. Dr. Michael B. Roberts is a clinical psychologist with extensive experience in treating and researching PTSD. In case you’re wondering—yes, they are related. Actually, they’re brothers. And the Brothers Roberts have a fascinating hypothesis.

  Like all good hypotheses, theirs started with a careful observation. First, they performed a systematic review of the medical literature on treatments for patients who develop PTSD after going through life-threatening emergencies and surviving critical illness.187 What they found is that there are some effective psychological treatments for PTSD. But their more striking finding was this: the earliest interventions (i.e., interventions applied earliest in the hospital course) appeared to be the most effective.

  But why would that be?

  The Brothers Roberts believe they know the answer. The earlier a psychological intervention is applied—as close as possible to the psychological trauma, or, ideally, during the psychological trauma—the higher likelihood that the intervention can actually prevent the development of PTSD, rather than just treating it after the diagnosis is made.

  In their systematic review, they found that all of the published research used psychological interventions to treat PTSD when the patient was in the recovery phase of their critical illness—well after they suffered the psychological trauma of the medical emergency. So the psychological trauma had already set in, and the treatments were aimed to reduce the PTSD symptoms. Maybe it was already too late. Perhaps the psychological damage was already done.

  Imagine for a moment how terrifying it must be to be brought in to an emergency department with a life-threatening emergency. You might be wide awake and able to hear everything that is going on around you in frantic attempts to save your life. You may be acutely aware the entire time that your life is actually hanging in the balance.

  The Brothers Roberts believe it is in that moment that much of the psychological trauma is occurring. Therefore, rather than waiting until the recovery phase of critical illness to do something about it, why not intervene during the psychological trauma, right there in the emergency department? Instead of treating PTSD after the fact, perhaps caregivers could intervene while the traumatic event is actually occurring in a way that makes the life-saving emergency phase of therapy not as terrifying and traumatic for the patient.

  Accordingly, the Brothers Roberts want to prevent PTSD, rather than just treat it, transforming a patient’s experience of emergency care so that psychological trauma does not actually occur. Think of it as preventive medicine, but in a hospital’s emergency department rather than a doctor’s office.

  But what type of early intervention in the emergency department could make a life-threatening medical emergency less traumatic for a patient’s psyche? What about…compassion? For the compassion hypothesis, the Brothers Roberts made two more observations. First, they went back to the medical literature and found that there already is compelling data that compassion can be effective for the treatment of PTSD.

  This is research from the psychology scientific literature in a different context. It focuses on training PTSD patients in self-compassion and compassion for others as a treatment for their own PTSD.155, 156 Nonetheless, it supports the concept that in PTSD compassion can make a difference.

  But the second observation was clinical, and it came from the practice of pediatric emergency care. When an ambulance brings a child to a busy emergency department due to critical injury or illness, the emergency care team often calls for a special type of consultation from a child life specialist.

  A child life specialist is a highly trained medical professional who is an expert in working with children who are in terrifying circumstances. They are experts in the psyche of a child and how to make things less traumatic, so that they do not develop long-term psychological damage from what they are going through. One of the main methods by which child life specialists accomplish this is through tender care and compassion.

  In the midst of all the craziness that goes on in a busy emergency department, child life specialists speak to the children in soft tones. They use gentle touch.

  They reassure the children that the caregivers are going to take good care of them. They connect emotionally. They use compassion to soothe the child, alleviating their fear, and making the entire experience less scary.

  It is intuitive that we would not want children to have nightmares of their traumatic event after they recover physically. That’s why emergency care providers call in child life specialists. We don’t need randomized controlled trials—it’s just common sense.

  So if it is intuitive to do this for children, why isn’t it also intuitive to do this for adults? We already know that adults who face life-threatening emergencies and critical illness suffer nightmares. In adults, it’s called PTSD.

  The Brothers Roberts’ hypothesis is that, for patients with life-threatening medical emergencies, compassion during the traumatic experience in the emergency department can reduce patients’ perception of a life threat—reducing their fear—and ultimately preventing the development of PTSD.

  They’re testing that hypothesis right now in the emergency department at Cooper University Hospital. Specifically, they are testing whether or not a compassionate care intervention (i.e., a specially trained medical professional using a standard operating procedure for compassionate care) can reduce fear, perceived life threat, and the subsequent development of PTSD in adults going through a life-threatening medical emergency.

  We won’t know the results for a while. But if the hypothesis is confirmed, given that compassionate care is relatively simple and scalable (not to mention low cost), this novel line of research has the potential to change the approach to emergency care worldwide.

  How Patients Do May Depend on How They Believe They Will Do

  It’s about hope. For patients, hope is a vital element of the process of recovery. Hope gives patients the strength to carry on in the face of adversity.

  And hope is not just vital in terminal or life-threatening diseases, but in all serious conditions. For example, a patient with obesity must have hope that he or she can actually lose weight. A patient with uncontrolled diabetes must have hope that his or her diabetes can actually be controlled.

  Patients give up when they lose hope, and that has major implications for health and disease. But let’s be clear about one thing: we are not talking about false hope here. False hope is when a patient has hope for a good recovery when science says it’s not at all possible. This scenario is actually very common in medicine.

  Imagine a patient with cancer who finds out that her tumor has already spread throughout multiple organ systems and science says with 95 percent certainty that it will be fatal within a short time, but the patient still believes that a cure is possible. In that case, what should a physician do? It’s actually somewhat controversial in medicine.

  On one hand, if that false hope is keeping the patient’s spirits up (and perhaps that’s all they have left in terms of quality of life), then it could be in the patient’s best interest not
to dash the patient’s hope. On the other hand, one could argue that talking to the patient to readjust their expectations for recovery might be the most ethical thing to do, because it could help them spend their time differently in whatever time they have left.

  It’s a challenging situation, and there are many valid opinions about what physicians should do. But one thing is clear: it would certainly be unethical for a physician to intentionally give a patient hope for recovery when science says it is impossible. Almost everyone can agree on that.

  But that’s not what we are talking about here. We are not talking about false hope; we are talking about real hope.

  Just as every physician has had the experience where patients have false hope in the face of incurable disease, almost every physician has also had the opposite experience. Patients who have a very real chance of recovery from whatever they are facing, but have already given up hope. Often this hopelessness can be a manifestation of depression. That’s understandable. Patients with serious physical health conditions often slip into depression, and it can sometimes make them believe (incorrectly) that recovery is not possible.

  Like the false hope scenario, this “no hope” scenario (zero expectation for recovery in the face of treatable disease) is also quite common, actually.

  Common? Yes. But does it matter?

  Yes, it does. But before we take a look at data on recovery expectations (i.e., hope) and clinical outcomes, there is an important caveat to keep in mind. Since depression may affect recovery expectations, it is important for research studies to account for the presence of depression in their analyses. That way, they can be sure that their results are the effects of recovery expectations specifically, independent of any effect of depression. In other words, for there to be compelling data that recovery expectations matter (i.e., hope matters), it would have to be over and above any effect of depression on outcomes.

  Just as importantly, the research would also have to adjust the analysis for things like age, disease severity, and presence of other medical conditions, so that those things are not a factor in the results, in order to specifically hone in on the effect of patients’ hope for recovery.

  That’s the very careful approach that researchers from Duke University took in a fascinating study of coronary heart disease patients conducted over nearly two decades and published in 2011 in Archives of Internal Medicine.191 The researchers enrolled 2,818 patients who were admitted to the hospital for a coronary event (e.g., heart attack) and underwent cardiac catheterization, a procedure where a cardiologist threads a wire into a patient’s heart arteries to assess for blockages.

  Prior to discharge from the hospital, the researchers assessed patients’ expectations for recovery (i.e., hope for a good outcome) using a well-validated scale. What they found, with up to 17 years of follow-up assessment, is that expectation for recovery was strongly associated with survival!

  At the ten-year mark, survival in the patients with the highest recovery expectations—the most hope for a good outcome—was nearly double the survival among patients with the lowest recovery expectations (the least hope for a good outcome).

  How patients believe they will do can be a major factor in how they actually do.

  Keep in mind, these results were determined after using statistical tests to remove the influence of age, disease severity, concurrent medical conditions, and depression. In short, how patients believe they will do can be a major factor in how they actually do, including whether or not they survive!

  Figure 4.1: Recovery Expectations and Survival in Coronary Heart Disease: Patients who have the highest recovery expectations (i.e., most hopeful) are most likely to survive the longest. (curve 4=most hopeful; curve 1=least hopeful)

  Source Archives of Internal Medicine

  (Barefoot, Brummett et al. 2011)

  In one systematic review of the medical literature, researchers from the University of Toronto identified that 94 percent (15 out of 16) of the published studies on patients’ recovery expectations found an association between better recovery expectations and better clinical outcomes.192

  Therefore, based on the available scientific data, one can conclude that hope matters. Belief in recovery matters. So what does all this have to do with compassionomics? The answer is: everything.

  Compassion from health care providers can have a major impact on patients’ hope for recovery. A randomized controlled trial conducted with primary care physicians found that when physicians’ positive communication is specifically intended to raise recovery expectations, it is effective.176 However, they found it is effective only if it is compassionate communication. Compared to a cold, impersonal communication style from the physician, the boosting of recovery expectations was far more effective when the physician was warm and compassionate.

  It makes sense, right? As you learned in Chapter 3, when people show us compassion, it has physiological effects on our nervous system and quells our fears. And we know from experience, when people care deeply about us and show us compassion, we feel encouraged. It buoys us up with hope. It can shift our entire mindset.

  When patients are struggling with hope, and are far more pessimistic about the trajectory of their health than the scientific facts of their illness would support, compassion can help patients “see it”…see their recovery as something possible.

  Compassion can also motivate health care providers to go the extra mile to help patients understand their illness better. Sometimes patients’ poor recovery expectations (having no hope for a good outcome) are the product of a lack of understanding, at least in part.

  Sometimes taking the time to communicate better is the greatest act of compassion that a health care provider can give.

  Taking the time to sit down and explain the medicine in a way a patient can actually understand can make a major difference. Sometimes taking the time to communicate better is the greatest act of compassion that a health care provider can give.

  Also, it is important to again emphasize that patients’ poor recovery expectations may be a manifestation of depression. You’ve already seen data from many rigorously conducted scientific studies showing how compassion for patients can alleviate depression. So, by extension, compassion can also boost patients’ hope for recovery.

  We have seen the data for having no hope and how it can have a major negative effect on one’s health, even survival. When patients have a reasonable chance for recovery, but have already given up hope, it is a health care provider’s responsibility to do something about it, to go the extra mile to get patients the help that they need.

  Science shows that hope matters. And science shows that compassionate care can be a powerful restorer of hope.

  Compassion Makes the Unbearable Bearable

  Kenneth B. Schwartz was a special person. In fact, without ever knowing it or ever intending to, he started a movement.

  After receiving a diagnosis of advanced lung cancer in November 1994, this 40-year-old, non-smoking, health care attorney with a wife and two-year-old son could have faced his diagnosis with bitterness or anger. Instead, he did something truly extraordinary—something that continues to echo throughout hospitals and health systems across the country and has impacted innumerable lives 25 years later.

  It all started with an observation that he made. Then he wrote about it in a Boston Globe Magazine article, entitled “A Patient’s Story.”193

  He observed that, as harrowing as his ordeal was, it was also punctuated by moments of exquisite compassion from his health care providers. He was struck by how that compassionate care could transform his experience and actually alleviate his suffering.

  As he wrote in that Boston Globe Magazine article, compassion makes “the unbearable bearable.” He described his caregivers as people who willingly and intentionally crossed the usual professional barrier between health care provider and patient (he called it the professional “rubicon”) so they could know Schwartz as a person. They took a personal interest i
n him.

  He also spoke of one physician scientist, Dr. Kurt Isselbacher, who was a renowned expert in clinical trials and director of the cancer center at Massachusetts General Hospital. Isselbacher was helping Schwartz navigate which experimental therapy might be the best to try in order to extend his life. He was a famous researcher, but he also cared about Schwartz and touched him with great compassion and gave him hope.

  Not false hope, mind you, but real hope. The kind of hope that came from Isselbacher’s real experience on the cutting edge of treating cancer.

  Schwartz wrote this about him: “I was especially affected because such hopefulness was not coming from a faith healer, but a distinguished researcher.”

  To Isselbacher, science and compassion were not mutually exclusive. They were complementary, even synergistic. It was not an “either/or,” it was an “and.”

  Schwartz also wrote this about his experience:

  “In my new role as a patient, I have learned that medicine is not merely about performing tests or surgeries or administering drugs. These functions, important as they are, are just the beginning. For as skilled and knowledgeable as my caregivers are, what matters most is that they have empathized with me in a way that gives me hope and makes me feel like a human being, not just an illness. Again and again, I have been touched by the smallest kind gestures…a squeeze of my hand, a gentle touch, a reassuring word. In some ways, these quiet acts of humanity have given more healing than the high-dose radiation and chemotherapy that hold the hope of a cure.”