Some you win, my lady, and some you learn.
—From The Second Best Exotic Marigold Hotel
During my first year out of residency, in my primary care practice in Idaho, I treated a patient named Carl—an army veteran and ex-smoker with severe emphysema. He was prone to recurring bouts of pneumonia and had required increasing amounts of oxygen because his respiratory function was gradually diminishing. During his visit that day, he didn’t have a severe infection. We were merely adjusting his inhaler medications. But I could see his prognosis playing out in a negative way over time. I was scared that my tools were no longer working for him. I believed that his condition was deteriorating and that his life expectancy was only six to twelve months. Because I was just out of residency (and quite green), I felt I needed to be open and honest with Carl and tell him that I felt that he should get his things in order as I did not foresee him living beyond another year.
This difficult task was challenging for me. I knew that I needed to convey to my patient the authentic reality of his condition. There is a way to do this that fosters hope and positive expectations. Unfortunately, I hadn’t yet mastered those skills. So I explained to Carl, in what I felt was a kind and trusting way, that he should get his affairs in order. Given how his course was going, I thought he should have this information so he would have adequate time to prepare for the end. I did what I believed a good doctor should do, and he trusted me.
The next morning, I received a tearful call from his wife. “Carl died in his sleep last night,” she said. I was stunned. Although this might well have been a sad coincidence, to this day, I wonder if my words had hastened his demise. If I’d presented the information differently or not at all, would he still be alive? Did I create the expectation that he didn’t have much longer to live? I regret that I will never have the answers to these questions.
Of course, clinicians have to be strategic. If they know a patient is a rebel and a fighter, they might consider telling him that he doesn’t have long to live. Some people benefit from such a statement. It mobilizes them, as they try to prove their doctors wrong. But others can collapse under the weight of this knowledge. As I have learned, everybody is different. Caregivers must know each patient’s story and develop insight into their uniqueness so that they can use the best approach to help drive energy toward health. Otherwise, they can do more harm than good.
THE POTENTIAL FOR HARM
Humans are extraordinary creatures, capable of tremendous compassion. When others are having a hard time, they want to help. And they do help and even heal in many conscious and unconscious ways. But anything that has the capacity to create a positive effect can also create a harmful one. I see this in medicine all the time . . . the most powerful drugs for good have the most egregious side effects. The strongest antibiotics may cure nasty infections but they can also disrupt the flora in the gut. Antidepressants can lift a dark mood, but they can also cause sexual dysfunction and weight gain. Chemotherapy kills cancer cells but may poison the body in the process.
Our biological tools for connection—mirror neurons, oxytocin, brain plasticity, epigenetic influences, and hardwiring—can also, in a sense, betray caregivers and the people they serve. If clinicians are angry, despondent, or put-upon, patients will sense these emotions as well and may suffer as a result. Richard Davidson has said, “Feeling distress interferes with the desire to help, because if you’re in pain yourself, you have little reserve for others’ pain.”1 The fact is, sometimes what people say and do in moments when others are hurting unleashes more harm than was ever intended. And when caregivers mismanage those moments, they not only do a terrible disservice to those they care about and care for but they can also wreak long-term damage to relationships.
If caregivers have a good, trusting bond with someone, what they say may be injurious because the person who is hurting is more likely to be open to them and so absorb their statements and believe them more readily. In the very worst circumstances, people can be flippant, or joking, or insensitive at exactly the wrong moment. They may not mean to be cruel, but they respond to the other person’s physical or emotional distress from their own insecurity, frustration, and fear, without considering the impact of the comment. This kind of help can be very damaging. It may drive wedges between friends and even isolate partners from each other in an affectionate, collaborative marriage. However, all is not lost in these instances. Nonverbal communication always supersedes the spoken word (see Chapter 8). If, through her behavior, a patient understands that his helper cares, he will forgive verbal transgressions because he knows her heart is true.
For those of us who wear the white coat, the stakes may be even higher. Physicians are perceived as authoritative figures, so patients are more likely to trust and believe them than people who aren’t physicians. But that belief can also cause harm. Doctors have been called “explainaholics.” According to James A. Tulsky, a developer of “Oncotalk,” an instructional program for doctors treating cancer patients, “Our answer to distress is more information, that if a patient just understood it better, they would come around.”2 But answering a feeling with a fact never works for physicians (or, for that matter, family caregivers) since it does little to address the patient’s underlying anxiety. When people who are suffering hear an unhelpful or callous comment from a doctor, especially at the most vulnerable moment of receiving a difficult diagnosis, they may hold on to that negative statement—and the anger they feel as a result—throughout their entire treatment and beyond.
WHEN PLACEBOS GO SOUTH: THE NOCEBO EFFECT
When you stimulate the “healing effect” through a human interaction, the self-healing mechanisms of the body are set into motion through a dynamic flow of positive expectancy. This is orchestrated within the unique context of a person’s life, cultivating hope and confidence toward getting to a better place. If both the caregiver and the person being helped truly believe this can be achieved, it often will be.
Along with the healing effect, however, there’s also an equal and opposite phenomenon called the nocebo effect. In Latin, nocebo means “I shall harm.” It works in much the same way as the healing effect, except in reverse—that is, negative beliefs can have damaging—sometimes even fatal—consequences, as I conjectured might have occurred with my patient Carl. A friend told me a gentle, nonmedical story of how this unfolded during her childhood. When she was learning to ride a two-wheeler, her father ran behind her as many parents did in those pre-training-wheel days, holding the back of the seat—or so she thought—to help her find her balance. In fact, with the positive belief that her father was supporting her, she rode quite a distance on her own. But when he didn’t respond to a question she’d asked, and she turned around to see why, she realized that she had left him at least a block behind her. She had ridden all that way on her own while holding on to the positive belief that she was “safe.” But as soon as she recognized that she was on her own, her negative belief that she didn’t know how to ride a bike took over, and down she went.
The same issues occur in medicine with the deactivation of the healing effect. The mind not only can make people feel sicker but can actually produce harmful symptoms. In a study of forty people with asthma, for instance, participants were told they were going to be exposed to an irritant that could worsen their breathing. They were also informed that they would subsequently be given a new drug to treat their illness. However, the “irritant” sprayed into the air was only nebulized saline—simply aerated salt water. Immediately, 47.5 percent of patients developed airway restrictions, and 30 percent experienced a full-blown asthma attack. Just as significantly, when the patients in the study were given the “new asthma drug,” every single one responded to the treatment—even though this remedy was also an inhalant consisting of the same aerosolized salt water.3
In another quite striking investigation,4 a group of patients with Parkinson’s disease underwent an experimental procedure in which a small hole was drilled into their skulls and cells from fetal brain tissue—as a replacement for the damaged area in their brains—were inserted in the spot believed to cause the disease. However, in this experiment (which probably would not be approved today because of stricter rules for studies in humans), the scientists also drilled holes in the skulls of a control group without inserting fetal cells.
As a whole, the experimental protocol did not work. There was evidence of brain growth among patients who received the fetal cells but no improvement in symptoms. In fact, those receiving the fetal cells developed worse dyskinesia (abnormal movements). But surprisingly, some of the people in the control group showed tremendous improvement of their Parkinson’s symptoms. However, when these patients were informed at the end of the study that they did not receive the intervention, they became angry and frustrated. Once the truth sank in that no fetal cells were inserted, their symptoms recurred. That’s the nocebo effect.
Why the people in the control group got better (placebo) and then worse (nocebo) may be related to fluctuations in dopamine levels. This reward hormone becomes deficient in Parkinson’s disease, and as we learned in previous chapters, positive expectations influence its production, so it is an important player in the placebo effect as well. Dopamine increases with the administration of placebos and decreases with nocebos. Drilling a hole in the brain with the patient hoping and expecting to find benefit from this aggressive therapy may have worked by encouraging the brain to boost the production of dopamine—which would improve the patients’ Parkinson’s symptoms. But when they learned that they were in the control group, this realization made them feel tricked (nocebo), their dopamine levels declined, and their symptoms returned. It’s just like learning to ride that bike: when my friend thought her dad was behind her, her dopamine levels were high, but when she realized that she was all alone, her dopamine levels dropped, and she fell.
Perhaps the most extreme examples of the nocebo effect are those of voodoo deaths. Many case studies describe how people who are perceived as having powers that some might portray as “black magic” have caused their targets to die if the latter had internalized a belief and an expectancy in the voodoo’s potency.
Walter B. Cannon of Harvard Medical School conducted research into this phenomenon that is foundational to our current thinking about how the body’s physiological responses can link emotions like fear with illness. In 1942, Dr. Cannon collected and published a series of anecdotes regarding voodoo death that were taken from Western medical observers of indigenous peoples in South America, Africa, Australia, New Zealand, the Pacific Islands, and Haiti.5 The following is a particularly interesting description that Cannon reported as observed and recorded by Dr. Herbert Basedow in his 1925 book The Australian Aboriginal.
The man who discovers that he is being boned [that is, a bone is being pointed at him so that he is cursed] by any enemy is, indeed, a pitiable sight. He stands aghast, with his eyes staring at the treacherous pointer, and with his hands lifted as though to ward off the lethal medium, which he imagines is pouring into his body. His cheeks blanch and his eyes become glassy and the expression of his face becomes horribly distorted. . . . He attempts to shriek but usually the sound chokes in his throat, and all that one might see is froth at his mouth. His body begins to tremble and the muscles twist involuntarily. He sways backwards and falls to the ground, and after a short time appears to be in a swoon; but soon after he writhes as if in mortal agony, and, covering his face with his hands, begins to moan. After a while he becomes very composed and crawls to his wurley [a shelter made of branches and leaves]. From this time onwards he sickens and frets, refusing to eat and keeping aloof from the daily affairs of the tribe. Unless help is forthcoming in the shape of a counter-charm administered by the hands of the Nangarri, or medicine-man, his death is only a matter of a comparatively short time. If the coming of the medicine-man is opportune he might be saved.6
Once the medicine man or shaman removes the curse, the victim, previously so close to death, no longer has anything to fear. Dr. Basedow describes how he suddenly lifts his head, sits up, and asks for water, ready to rejoin the living.
Although Dr. Cannon and his predecessors lacked the EEGs and fMRIs we possess today to assess what was happening in the brains of people who felt cursed, nor did they have access to the analysis of the hormones, neurotransmitters, and neuropeptides involved in initiating these kinds of responses, still their observations that these individuals were quite literally frightened to death are valid. Today we can track the sequence of events that lead to such an outcome. Initially, the intended victims believed in the powers of the “witch doctor” or the enemy who was cursing them, and they became terrified. Their fear set off such a strong reaction, it caused a severe stimulation of the fight-or-flight process that is controlled by the sympathetic nervous system. That, in turn, triggered constriction of the blood vessels that reduced the blood supply to vital organs including the heart. With the ensuing cardiac arrhythmia and vascular collapse, the heartbeat became so weak, the believers died.7
Such brutal examples are more or less out of everyday experiences for most Westerners, but it can help explain how a less dramatic situation may also cause harm. For instance, women enrolled in the Framingham database with similar risk factors for cardiovascular disease were four times more likely to die if they believed they were predisposed to heart attacks as compared with those who did not harbor this belief.8 This is not terribly different from reactions to a voodoo curse.
In another study published in the prestigious New England Journal of Medicine, researchers documented how some apparent heart attacks were reversible because they were caused by a spasm in a coronary artery. Actually, these are cases in which the heart is “stunned” due to sudden, severe emotional stress. The patients in this study who were diagnosed with “broken heart syndrome” suffered the symptoms and elevated cardiac enzymes of a heart attack, but the good news here is that they recovered completely.9 This phenomenon is also named takotsubo cardiomyopathy, after a Japanese octopus trap. When the heart contracts normally, it generally transforms from the shape of a melon to that of a narrow potato. But with takotsubo, the heart is being choked. It actually resembles the narrow top of the trap that keeps an octopus from escaping once it has entered.
This disorder can be dangerous. A 2015 study that looked at a larger number of these takotsubo cardiomyopathy cases showed that individuals with the syndrome had a higher rate of death and some actually died from the event.10 However, most of the heart attacks in the initial study were not treated in the traditional sense; the injury resolved on its own when the powerful emotion passed. When these patients underwent cardiac catheterizations to look for blockages of the coronary arteries, 90 percent of the angiograms were completely normal. Still, caregivers can learn a powerful lesson from this research: if a severe emotion can cause a reversible “heart attack,” think of how positive feelings could help.
How to explain these “heart attacks”? The experience of Buddhist monks can be instructive. When their brain waves were tracked with an EEG while they were deep in a loving-kindness meditation (which I will explain in more detail in Chapter 10), they hardly responded to sudden, loud sounds such as gunshots. They didn’t move; they didn’t jump.11 The sensors tracking their brain waves barely registered the blast. Upon hearing such an unexpected burst of deafening noise, most others would have startled or recoiled. We can trace these reactions back to the autonomic nervous system, which controls both action and rest. One element, the sympathetic nervous system, governs the fight-or-flight response while the other, the parasympathetic system, helps people relax. When these two systems become unbalanced, say tipping toward an apprehensive response, disease can occur. The more people live in a heightened state of anxiety, the more likely they are to be jarred, scream, or shout when an unexpected event disrupts their sense of peace. For instance, one of my friends—a high school administrator who worked with volatile teenagers involved in gangs—was wound up so tight, he would jump three inches off his chair when one of his sons dropped a fork during dinner. His sympathetic nervous system was set on overdrive.
Dr. Luana Colloca’s study at the University of Turin that I mentioned in Chapter 1 in which postop patients received a powerful analgesic drug either directly from a clinician on their medical team or unannounced from an automatic infusion machine’s IV drip, had an additional component. When a nurse came into the hospital rooms, turned off the drip, and announced to the patients, “We’re stopping your pain medicine now,” the patients experienced more pain than if the infusion machine’s computer had turned off the IV automatically and without notice. How is this possible? With her actions, the patients felt that their trusted caregiver had betrayed them. This perception of betrayal caused suffering and harm.
WHAT DOESN’T HELP
I often tell the story of Carl’s sudden and unexpected death to the medical students I teach in a course called The Healer’s Art—one of my favorites, pioneered by Rachel Naomi Remen at the University of California, San Francisco. It’s a five-session elective we offer to our first- and second-year students, as do ninety other medical schools across the country. Students write their own Hippocratic oath and examine why they want to do this work despite the many sacrifices and challenges it entails.
During the class, in an attempt to have our young doctor-trainees understand their patients and communicate with them more compassionately, we ask them to remember a time in their own lives when they’d experienced personal suffering such as the death of a loved one or the loss of something meaningful. Then we ask them to remember what someone did or said that was unhelpful or actually made them feel worse. Interestingly, in the fourteen years that we have been teaching this course, the answers have always been consistent between what helped and what didn’t, suggesting that this is a universal human truth.
Here’s what didn’t work during a time of suffering:
• The person tried to explain it.
• The person told me, “Everything will all be okay.”
• The person avoided me or changed the subject.
• The person tried to fix it.
• The person talked about her own experience.
• The person belittled my feelings.
• The person didn’t allow me to cry or be sad.
• The person analyzed the situation.
• The person pushed his own spiritual beliefs.
Those words and actions ended up in the “did not help” column because people are often too quick to project their beliefs onto others without taking the time to listen and just be with them. Healing happens more as a result of one’s presence and not so much from the advice that comes out of one’s mouth. In order to do this well, caregivers need to pause, get out of their heads, and feel what the other person needs. (I provide ways to do this in Part II.) Turning away, placating, or changing the subject announces one’s absence quite loudly. Analysis, judgment, criticism, and belittlement make people feel worse. Giving suggestions? Friends and family don’t need knowledge; they need unconditional caring. There will be a time to advise them . . . maybe . . . but only if they ask.
This is really important when people are suffering. If they come to clinicians asking for advice on how to best manage diabetes, then it is appropriate to share cognitive knowledge. But if they’ve just lost a parent to a heart attack, they crave our hearts—literally. Remember the power of oxytocin? They need a kind presence and perhaps a hug, if they want one. They don’t want us to “fix” the problem for them, because actually, we can’t. Instead, we can help them move through the painful situation in a healthy way.
FIXING AND OTHER EXAMPLES OF “BADNESS”
People have the urge to be “fixers” instead of healers. When a child comes home crying after having had a fight with another little boy, his parents might be quick to offer a tender cuddle. But they also feel the impulse to make the situation better. Before they even realize it, they’re suggesting how the interaction at school went awry (“Did you say you were sorry?”). They might offer ideas about how to think about the situation (“Don’t take it too hard. Kyle is just teasing you because he’s jealous!”). They might provide advice about how to behave differently the next time (“Just learn to laugh it off”). Or they may want to punch the other kid in the nose! But even the wisest, tried-and-true suggestions can create distance between caregivers and the person who’s hurting. The words they use, their tone of voice, the mere suggestion that a problem is small and manageable can reveal the ways in which helpers are not hearing and understanding what’s going on.
People do their most egregious “fixing” when they’re advising others about their health. Everyone has a helpful answer. If a parent has high blood pressure, they suggest low-sodium foods. When a colleague groans about the aches of arthritis, they say, “Have you tried an anti-inflammatory like ibuprofen?” Recently, when one friend complained she had gained too much weight during pregnancy and that she was really worried about the way her body had changed, another quickly came to the rescue with the suggestion: “Can’t you just walk a little bit every day?” No matter how good the intentions of the helper, the person who’s hurting is seldom better off with these kinds of solutions.
Most importantly, the fix-it type of support offers only short-term solutions. The deeper, and sometimes long-standing, issue of what hurts still goes unaddressed. Instead of facilitating health, this kind of “help” actually prolongs pain and hinders recovery. When caregivers fail to acknowledge the big picture of another person’s suffering, they fall short as friends, and they fail as supporters and helpers. Everyone wants to distract from anguish, but the real healing happens when caregivers help patients turn toward it and be with it.
Turning toward suffering doesn’t sound like much fun. Who wants to do that? If I give a patient the option of getting a massage for the pain in his neck versus talking about the situation in his life that’s giving him a pain in the neck, most likely he will choose the former. But the pain won’t resolve until we turn toward the authentic cause. Both my patient and I need to give it our attention. As I explained in Chapter 2, this is the active process of facing what’s really going on as compared to passively treating the problem with a drug or a massage. With an active process, the patient gets what he needs most . . . another’s true presence. With that kind of attunement, life hurts less.
Over the years, I have found that people make many unhelpful statements that may rupture a connection, even though they believe they’re doing their best to be present with someone who is hurting. In fact, most often, these comments and questions function as distancing devices. Here are a few familiar ones:
“I know what you’re going through. When I broke my leg . . .” This is a form of narcissism. People turn the conversation back on themselves and their own problems as a way of “relating” to the other and “just trying to be helpful.” How about: “When I had back pain, I read this book/did yoga/saw a chiropractor/had physical therapy/took narcotics/tried acupuncture, or you-name-it, and I avoided surgery.” This implies that what worked for one person should work for another. Maybe, but maybe not. A patient’s condition might be completely different, and others’ well-meaning but misguided advice could actually worsen the problem. When people are busy talking about their own lives, they’re not listening deeply to the other’s pain so they’re not really making a connection.
“You think that’s bad?” This is the approach of instantly telling the person about someone else whose problems were worse as a way of diminishing what the injured party is suffering. As a good friend explained to me, “I can’t tell you how many horror stories I heard about bicycling accidents after my husband took a serious spill that landed him in the hospital for a few days with 6 broken ribs, a bruised lung, and a face that looked like raw steak.” Does anyone really want to add to the burden of the injured person and his or her family by sharing these one-upmanship tales? Whom do they really serve? How are these stories helpful? And how do they reinforce the connection?
“Why are you telling me this? Can’t you see how upset I am?” During a crisis or medical setback, family caregivers can become anxious and need to be taken care of themselves, diverting precious energy. This attitude also can cause the person they want to serve to conceal the seriousness of the problem or prevent him or her from reaching out for help when it’s most needed—as a way of protecting family members from becoming too distraught.
“Snap out of it . . .” “Pull yourself together . . .” “It can’t be that bad . . .” With this attitude, people communicate that they don’t recognize the other’s suffering or hardship. This heightens an individual’s sense of aloneness just at the moment when support and connectedness are most needed.
“I’m so worried about you. I’m afraid you’ll never get better.” This may be the most destructive communication of all. If we convey confidence and positive emotions through our mirror neurons, which in turn can create a healing epigenetic environment and a reordering of brain cells, we can do just the opposite when we express doubt, fear, and despair.
WHAT HELPS
In The Healer’s Art class, we ask our students to identify which statements or behaviors had been unhelpful when they were suffering a significant loss. But we also inquire: “What did someone say or do that helped you get through your challenging situation?” Consistently, others’ simple caring presence and actions comforted them more than any advice did. Here are the most common on our list.
What helped? The other person:
• Just listened
• Cooked me some food
• Shared in and accepted my emotions
• Sat with me
• Gave me a hug
• Recognized my needs and didn’t ignore or avoid me
• Was patient with me
• Was just there for me
People who are hurting need to be held and cared for. It is not knowledge, but rather presence and connection that count. They need to know that they’re not alone in their predicament. “We’ll get through this together,” is a positive statement that conveys compassionate support and a willingness to be fully available. Perhaps this is why cancer support groups are so effective.
In the final analysis, I think it is important that caregivers do their best, but they will burn out if they believe they can change or fix people. It is more fun to be a friend and encourage through a caring connection. At least with this attitude, we will do no harm.