Compassionomics

by Stephen Trzeciak

  Wendy did not want to let Dr. Baxter down. He had high expectations. She vowed to make a change. For the first time, she started taking her medicine faithfully, as prescribed, never missing a dose. She did everything that Dr. Baxter said, to take better care of herself. For the first time, Wendy’s disease came under control.

  She soon went from a patient who was well known for not taking her medicine and a sky-high viral load to having zero copies of HIV in her blood. Today, Wendy has had an undetectable viral load for more than three years!

  Harry and the Dreaded Hat

  Here is another story of how a physician who knew his patient as a person had a powerful influence on his patient’s self-care:

  Harry was a kind man, devoted to his family, and CEO of a successful small business. Harry was also a real character. He loved to laugh. Practical jokes were his thing.

  Harry was also someone who was “full of life.” When he received the unexpected bad news that he had a rare urinary tract cancer, which carries an especially poor prognosis for long-term survival, he decided he wanted to maximize every meaningful moment in the life he had left.

  That’s when Harry met Dr. Mark Angelo. Harry had a lot of pain associated with the cancer, and so he was referred to Dr. Angelo, who is a palliative care specialist. (As mentioned in Chapter 3, palliative care is a branch of medicine focused on quality of life and symptom management for patients who have diseases that are no longer curable.)

  Dr. Angelo came to know Harry quite well in the palliative care clinic, and the two of them built a strong bond. Angelo worked to control Harry’s pain so that he could continue to work and get every last minute of joy out of his life. Even as he underwent chemotherapy, Harry attended every one of his kids’ ball games and recitals. That was the most important thing in the world from Harry’s perspective. You could consider it to be his purpose in life at that point in time.

  One day, Harry visited Dr. Angelo complaining of abdominal pain so severe that he couldn’t even sit down in a chair. He needed more pain meds and decided to stop working. Harry knew his time was short, so he confided in Dr. Angelo, “Doc, I think my run is coming to an end.”

  But Dr. Angelo expressed his hopefulness that he didn’t think that was necessarily the case just yet. He suggested that maybe Harry was just feeling despondent due to the pain level…that if he could admit him to the hospital for intravenous pain medication, perhaps they could get control of the pain rather quickly and get him discharged in time to celebrate what Harry believed would be his last Thanksgiving at home. That was Harry’s wish above all: to celebrate Thanksgiving at home with his family…perhaps for the last time.

  Harry adamantly refused to be admitted. “No way,” he said. He did not want to take the risk of missing Thanksgiving at home. At first, he was not even willing to talk about it. “I’d rather just take the pain meds when I really need them,” he explained.

  And that was the crux of the matter. Dr. Angelo began to understand that Harry was a very proud man who saw himself as some kind of “tough guy”. He thought it was better to tough out the pain and only rely on the medication when the pain was extremely severe, rather than every several hours as prescribed.

  But Angelo knew that if Harry agreed to be admitted to the hospital he could help get the pain under control quickly with intravenous medications and then, because he had a strong rapport with Harry, he could help him understand the importance of consistent dosing of oral pain medication at regular frequency once he was discharged so that Harry was not miserable for the holiday.

  Because Dr. Angelo had a special bond with Harry, he could connect with him and help Harry understand that he did not have to be a “tough guy.” In the condition Harry was in with incurable cancer, it was not a sign of weakness to take the medication. Knowing how important Thanksgiving was to Harry, Dr. Angelo begged him to first give inpatient therapy a chance.

  Harry knew Dr. Angelo cared about him, and he trusted him, so ultimately Harry agreed to be admitted. If it were any other doctor, Harry would have refused. But if Dr. Angelo said to do it, Harry figured it must be the best thing for him.

  As people who have cared for cancer patients understand, pain management can be very challenging—not just getting the pain controlled, but also managing nausea. Dr. Angelo was using intravenous pain meds to control Harry’s pain and simultaneously working to control his nausea, so that Harry could tolerate pain medications by mouth. (That was the key part of getting him discharged in time to spend Thanksgiving at home.) Angelo visited Harry every day in the hospital, and their connection grew deeper.

  And that is when Angelo noticed Harry’s hat…a Dallas Cowboys hat. Harry was wearing that Cowboys hat every time Angelo went to see him in the hospital.

  But here’s the thing: Dr. Angelo was born and raised in Philadelphia and is a die-hard Philadelphia Eagles fan. And he was treating Harry at MD Anderson Cancer Center at Cooper in Camden, New Jersey, which is smack in the middle of Eagles country. Of course, Harry knew that hat would rile up Dr. Angelo.

  If you are not a follower of the National Football League, let’s just say that Philadelphia Eagles fans and Dallas Cowboys fans don’t get along. It’s generally not a good idea to wear a Cowboys hat in Eagles country.

  As a guy from Philly, Angelo felt a little…shall we say…taunted. He was most definitely not a Cowboys fan. The two would trade jokes about the dreaded hat and Harry’s insistence on wearing it. Angelo teased him (in jest, of course), but then did his best to ignore Harry’s hat. But that just egged Harry on; remember, he was a practical joker who loved to laugh.

  But on the day before Thanksgiving, when Dr. Angelo showed up at Harry’s hospital room, Harry was in tears. He said he was done with it…all of it. He didn’t care if he had pain. He just had to be home for Thanksgiving. So Dr. Angelo stopped the intravenous pain medications and switched him to oral meds, which thankfully worked very well. The next day, Thanksgiving Day, the plan was for Harry to go home.

  Harry was thankful for that. But there was just one problem. When Thanksgiving Day came, his wife couldn’t pick him up from the hospital because their young son had a high fever. She could not take him out of the house, and there was no one else to watch him. Since it was Thanksgiving Day, the usual medical transportation options were not available. It appeared that Harry was stuck.

  That was when Dr. Angelo volunteered to drive Harry home…in his own car. He wanted to honor his promise to get Harry home for this important day.

  It was perhaps not surprising that, when the hospital staff helped Harry into the passenger seat of Angelo’s car, he was wearing his Dallas Cowboys hat. At which point Dr. Angelo joked, “Look, Harry. I’m happy to give you a ride home, but I am not giving that hat a ride home. Could you please put that thing away?”

  Do you think Harry would take the hat off? No chance. He wore that Cowboys hat with pride the whole way home. Angelo just smiled.

  As Dr. Angelo pulled into Harry’s driveway, he saw Harry’s son waving to them in his Spider-Man pajamas from the window. Harry’s wife gave Angelo a big hug, thanking him profusely for delivering Harry home. She even offered him a glass of champagne and a seat at their Thanksgiving dinner table, although he declined so he could get home to his own family.

  It was a very special Thanksgiving for Harry and his family. Daddy was home! And thanks to Dr. Angelo and the team at the hospital, Harry’s pain and nausea were finally under control. Harry knew how much Dr. Angelo cared about him, so he did exactly as Dr. Angelo instructed. Instead of waiting for severe pain to hit him, Harry stayed ahead of the pain by taking the medication at the precise regular intervals Dr. Angelo prescribed. It worked. And Harry was able to truly enjoy Thanksgiving with his family. That meant everything to Harry, and his wife and kids.

  Sadly, Harry was right…it was his last Thanksgiving. He made it to March of the following year when he died in an inpatient hospice unit (because he didn’t want his children to see him die at home).


  Soon after the news of Harry’s death, as was his custom, Dr. Angelo called his wife to offer his condolences. As is often the case, he got her voicemail instead, where he offered condolences and explained she should not feel obligated to call back unless she wanted to.

  He didn’t get a return call until a couple months later when Harry’s wife asked if she could come seem him. She wanted to bring Angelo something that Harry wanted him to have.

  You may have already guessed what it was…his Dallas Cowboys hat, of course! In fact, Harry formally left it to Angelo in his Will. Harry’s wife said that he was so moved by Dr. Angelo’s gesture of compassion, especially driving him home on Thanksgiving when it meant so much to Harry, that he just felt Angelo should have his favorite hat.

  Since that day, Harry’s Dallas Cowboys hat enjoys a special place of honor in Dr. Angelo’s office. Angelo smiles fondly when telling the story of Harry and the dreaded hat, because of Harry’s keen sense of humor and because he understood that this was Harry’s way of teasing his doc—a die-hard Philadelphia Eagles fan—even after Harry was gone.

  So why are you hearing the story of Harry and the dreaded hat? So that you understand what it looks like when a caregiver knows a patient as a person. Dr. Angelo certainly knew Harry as a person. He knew exactly what was most important to Harry. Over the years, that meant making it to all of his kids’ ball games and recitals. At the end, it was making it home for Thanksgiving one more time.

  Dr. Angelo knew Harry as a person to such an extent that Harry got to know Dr. Angelo in the same way. So much so that Harry decided to play a fantastic practical joke on Angelo in his Last Will and Testament!

  But let’s focus in on one specific and very important aspect of Harry’s story: Why did he agree to be admitted to the hospital? And why did he start strictly following his doctor’s orders with regular dosing of pain meds once he was home? Those things were key to getting Harry’s pain under control and allowing him to enjoy one last Thanksgiving with his family.

  He only did what Dr. Angelo recommended because Harry trusted him. Dr. Angelo knew Harry as a person, and Harry knew Dr. Angelo cared. And that Thanksgiving, that was what made all the difference. That’s why knowing a patient as a person can be so powerful in self-care.

  Back to the Data

  Now that you understand why it’s so critical to know a patient as a person, let’s take a closer look at more evidence for why compassionate communication from health care providers improves patient self-care.

  Effective communication is essential in this regard, specifically when it comes to adherence to therapy. A rigorous meta-analysis supported by research grants from the National Institutes of Health (NIH) and the Robert Wood Johnson Foundation that examined 127 studies published in the biomedical literature found that patient-centered communication from health care providers was associated with 62 percent higher odds of patient adherence to treatment.203 Given that compassion is a cornerstone of patient-centered communication, this makes sense.

  Another meta-analytic study from Northeastern University found that more positive talk (and less negative talk) from health care providers was associated with better patient adherence to prescribed therapy.204 Likewise, a study from Michigan State University provides yet more evidence that the compassion of health care providers is a key link between better physician communication and patient adherence to treatment recommendations.120

  Researchers in this study gave a survey to 550 outpatients. The compassion questions asked patients if their physician showed caring and concern for their well-being, interest in knowing what their health care experience meant to them, and respect for their feelings. Other questions asked if their physician responded to them “mechanically.”

  What they found is that more compassion was associated with significantly better adherence to prescribed medications, through the mediating factors of better information exchange, perceived expertise, interpersonal trust, and partnership.

  The association between compassion and better information exchange will be explored more in Chapter 6 on health care quality, where you’ll learn that a health care provider’s compassion is associated with both better patient disclosure of information and better patient recall of instructions.174, 175, 202, 205 Since that is the case, it’s perhaps no surprise that there is a link between compassion, better communication, and better adherence to therapy.

  Another concept that is crucial to the issue of adherence to therapy is patient motivation. There are a plethora of data that support the link between caregiver compassion and patient activation, patient engagement, and patient enablement.

  Let’s consider each of these. First, patient activation is a patient’s willingness and ability to take independent actions to manage his or her own health and health care.206 It involves having (or gaining) the knowledge, skill, and confidence to manage one’s own health.

  Patient engagement is a broader concept that encompasses patient activation. Patient engagement involves the interventions designed to increase activation, and patients’ resulting behavior, such as preventive care or health maintenance.207 Implicit in the concepts of patient activation and engagement is the understanding that patients manage their health on their own the vast majority of the time, making decisions daily that affect their health in meaningful ways.

  Research shows that compassionate patient care is associated with better patient activation and engagement and, as a result, better patient self-care.169, 208 This makes sense. Physician compassion can drive patients to be more engaged in their health care and to want to have more information on both treatment options and health promotion. This has been associated with better long-term outcomes and enhanced quality of life.169

  Patient enablement is a bit different: it’s about empowerment. Patient enablement is the extent to which a patient feels empowered after a medical consultation, in terms of being able to cope with, understand, and manage his or her illness.209 At a very basic level, it is encouragement (i.e., “You can do it”). But even if a condition is incurable or a desired outcome is not attainable, enablement is the encouragement that a patient can effectively cope with what comes. It’s vital for optimal patient self-care.

  The opposite of patient enablement or empowerment would be learned helplessness. You will recall that in Chapter 4 you read about a nursing home study where compassion from the nursing aides was associated with a reduction in learned helplessness among elderly nursing home residents.173

  So perhaps it makes sense that multiple studies have found compassion for patients to be associated with better patient enablement.186, 210, 211 In fact, in one study of more than 3,000 patients in primary care, researchers measured health care provider compassion from the patients’ perspective (using the CARE measure, as described earlier) and patient enablement, using a well-validated scale.211

  Without compassion, patients will not feel fully empowered to cope with, understand, and manage their illness.

  What they identified was that with low compassion from health care providers, maximum patient enablement was never found. They concluded that patient enablement requires compassion. Put simply, the researchers found that without compassion, patients will not feel fully empowered to cope with, understand, and manage their illness.211

  The Importance of Trust

  Another mechanism by which compassion for patients can improve patient self-care and patient adherence to therapy is through building trust.138 Building trust, along with better patient activation and enablement, produces a stronger “working alliance” between the patient and health care provider.

  A working alliance is agreement on goals of therapy and methods to achieve those goals, and the extent to which there is an emotional bond – characterized by liking and trust – between patients and their health care providers.212 (Doesn’t this perfectly describe Harry and Dr. Angelo?)

  So rather than a patient acting as a passive bystander in his or her health care, a working all
iance between patient and provider produces a special therapeutic bond that creates synergy toward better health. Research from Fordham University in New York shows that health care provider compassion produces just this type of better working alliance with patients.213 Also, a better working alliance is associated with better patient adherence to treatment recommendations, as well as better health-related quality of life.213, 214

  Now that we have described some of the mechanisms by which compassion for patients can affect patient adherence to therapy, let’s look specifically at the data on the direct effects of a caring relationship on adherence. In scientific journals, those data can be traced all the way back to 1969.

  Yes, much like the evidence described earlier on how compassion reduces patients’ need for medications from anesthesiologists when having surgery, some of these data have been around for almost five decades. But, also as we also noted earlier, while these studies were published in the world’s best journals and certainly were impactful in their day, it has not been until now that they have been pulled together here with all of the other studies to truly paint the picture of the power of compassion.

  Let’s consider some of these now. In a study from the University of Southern California published in The New England Journal of Medicine, researchers studied patients’ response to medical advice among eight hundred outpatient visits to Children’s Hospital of Los Angeles.215 They examined the association between the quality of doctor-patient communication and adherence to treatment recommendations.

  In this case, because the patients were children, the study was looking at the association between the pediatricians’ communication and the parents’ adherence to the child’s treatment recommendations. All of the visits in this study were new (i.e., seeking care for a new illness), and it was the first time the pediatricians were meeting the children and their parents.