Compassionomics

by Stephen Trzeciak

  For Schwartz, compassion was not just a “nice to have.” It was not just a moral imperative for caregivers. Not from his vantage point. To him, compassion was vital medicine. It changed everything.

  Sadly, Schwartz died in September 1995, less than a year after his diagnosis. But his message was powerful, and it resonated with people. That powerful message would echo for decades—far beyond what Schwartz could have ever known—in “Schwartz Rounds” conducted in lecture halls and conference rooms in hospitals all across the country.

  Schwartz Rounds are a regularly scheduled time where health care providers convene to discuss the social and emotional issues they face in caring for patients and families and to share their experiences and feelings on topics drawn from actual patient cases. Schwartz Rounds have been shown to improve health care providers’ ability to give patients the compassionate care that they need.

  Schwartz Rounds are made possible by the Schwartz Center for Compassionate Healthcare, which Schwartz founded just before his death. Today, the Schwartz Center has over 550 participating hospitals and health systems, not only in the U.S., but also in Canada and the U.K. The Center supports 200,000 health care professionals each year, by providing education and resources and convening regular conferences to advance compassionate care.

  In summary, you’ve learned about the psychological health benefits of compassion in these recent pages. You saw compelling data that compassion can alleviate psychological distress and, specifically, that it can alleviate symptoms of depression and anxiety. You learned how compassion can improve quality of life and well-being and can foster hope…the kind of hope that people need to carry on.

  But all of this scientific research for impact on psychological health really just comes down to the words of Kenneth Schwartz, which continue to echo today as much as they did back in 1995: Compassion “makes the unbearable bearable.”

  CHAPTER 5:

  Compassion Motivates Patient Self-Care

  “People don’t care how much you know until they know how much you care.”

  —Theodore Roosevelt

  Home health nurses work a little differently than nurses do in other settings. They provide care right in patients’ homes. Guess what they typically do first when getting to know a new patient?

  It’s not bringing in equipment to make the patient’s home more like the hospital or clinic. Nor is it setting up some kind of command center of monitoring or communication. What they do first is quite simple: they gather up all of the medication bottles throughout the house, put them all on one table, and reconcile the medications in the house with those prescribed to the patient.

  Why is this so important? Because they need to see how many pills are left. So often, patients are not actually taking the medications that they have been prescribed. That’s called “nonadherence” to prescribed treatment. It’s a huge challenge in both medicine and public health.

  Adherence is defined as the extent to which patients are able to follow treatment recommendations from health care providers. Nonadherence is, of course, the opposite: patients not following treatment recommendations.

  The most common example of nonadherence is when a patient is supposed to be taking prescribed medication but is not taking his or her pills. But nonadherence can be about much more than just not taking medication. It’s also a factor with other treatments, like patients with kidney failure who do not show up for scheduled dialysis treatments. Or when a physician recommends that a patient modifies a certain behavior—like quitting smoking, losing weight, or exercising regularly—but that patient doesn’t follow through.

  All of the things above add up to the concept of patient self-care. That is, the ways in which patients take care of themselves when they are not with a health care provider. Self-care is patients’ ability to be diligent in caring for themselves in all the hours that health care providers aren’t directly involved.

  Think about it: A physician typically sees a patient for just a few hours in a year. But what about the other 99.99 percent of the time? The question becomes: how well will patients adhere to treatment recommendations during all the other hours when they are not face-to-face with their health care providers? For chronic diseases like diabetes or high blood pressure, succeeding in achieving health goals is all about a provider’s ability to engage a patient in self-care.

  Compassion Promotes Adherence

  A physician can be the smartest doctor in the world and know just the right intervention to prescribe, whether it’s a pill, a surgery, or a lifestyle change. But what good is it if the patient doesn’t do it? If a patient doesn’t take the medicine or follow through on a recommended therapy, how will he or she ever heal?

  Former Surgeon General C. Everett Koop once summed it up like this:

  “Drugs don’t work in patients that don’t take them.”

  A recent New York Times article called patient nonadherence to therapy an “out of control epidemic.”194 That’s because the numbers are staggering. Rigorous research shows that people who are prescribed medications typically take only about half of their prescribed doses.195

  Other research sponsored by the AHRQ and published in the Annals of Internal Medicine found that patients with chronic disease fail to take their medications as prescribed half the time.196 They also found that 20 to 30 percent of medication prescriptions are never filled in the first place. In other words, the patient had no intention of ever taking them.

  Nonadherence to prescribed therapy in patients with chronic disease accounts for $100-300 billion in avoidable health care costs annually in the U.S. alone.

  It’s a huge problem, especially from a public health perspective. Because the downstream effects of people not taking their medicine are, to some extent, avoidable. Patient nonadherence results in poor control of disease which leads to avoidable complications and hospital admissions. In fact, research shows that nonadherence to prescribed therapy in patients with chronic disease accounts for $100-300 billion in avoidable health care costs annually in the U.S. alone.196, 197, 198 We will dive more into costs in Chapter 7.

  But the consequences of nonadherence are even more sobering when it comes to affecting patients’ lives. Chronic diseases will progress if left unchecked, leading to worse long-term health outcomes, morbidity and even mortality.

  It is important to recognize that patient nonadherence to therapy is an extremely complex and multidimensional health care problem. Researchers have identified numerous complex factors that contribute to nonadherence including socioeconomic factors, a patient’s ability to pay for medications, patient beliefs about taking medications (e.g., “I’m not a ‘pill person’”), and patient motivation.

  Other things that factor in include cognitive impairment, a patient’s lack of understanding about his or her disease, how complicated the instructions are, and side effects of the drug, among others. Every patient and situation is unique.

  As a result, there is no one single “magic bullet” to effectively address the challenge of nonadherence.198 However, there are tools and strategies to promote patient adherence to therapy that can help. Given the enormous magnitude of the problem—up to $300 billion in avoidable health care costs annually in the U.S. (and the corresponding human toll)—even small improvements in nonadherence can have enormous impact.

  Let’s look at the causes of nonadherence that are the most easily modifiable, especially the ones that can be widely disseminated at a low cost of implementation. Does such a low cost, easily implemented intervention exist that can modify such a high impact problem? Yes, it does: it’s the patient’s belief that somebody cares.

  Alternatively, the belief that nobody cares leads to nonadherence. Without question, the belief that someone cares is a powerful driver of patient self-care. Primary care physicians are reminded of this on a regular basis. Patients with chronic diseases who are successful in adhering to their treatment regimen and achieving health goals often credit a spouse or other loved one as
the main reason. They say, “I do it for my wife” or, “I do it for my son.”

  Or, they may express it as not wanting to let down or disappoint the loved one who cares about their health. Sometimes they express it as fear of their loved one’s wrath if they slip up and fail to strictly adhere to therapy. But the common denominator is that they know somebody cares that they take their medicine. Science shows that social support is a key determinant of adherence to therapy in patients with chronic illness.199, 200 When patients know they are not in it alone, it motivates them to take better care of themselves.

  Here’s the flip side: If patients believe nobody cares that they achieve a health goal—like control of a chronic disease—then they may be less motivated to heal. They may be less adherent to prescribed therapy. This can occur even in the absence of overt depression or loneliness. Even if patients intend to adhere to therapy, they may be less strict about actually doing so if they believe it doesn’t really matter to anyone else.

  It probably makes sense that care from loved ones makes a difference in patient self-care, but what about caring from health care providers? Are there data that health care providers’ compassion for patients can also be a difference-maker for patient self-care?

  Absolutely. If health care providers care deeply about patients, and the patients feel that, they are more likely to take their medicine.

  Know Me as a Person

  There have been remarkable scientific advances in the treatment of many diseases over the past thirty years, and one of the most striking of these is in the treatment of Human Immunodeficiency Virus (HIV). Once considered a death sentence, HIV is now very treatable with advances in antiretroviral therapies. With tight control of their disease, patients who are HIV-positive can now live to a ripe old age. When they die, the cause of death may be one of the common natural causes associated with old age, rather than HIV itself.

  But the vital ingredient to success in controlling HIV disease is clear: it’s patient adherence to antiretroviral therapy. They have to take their medicine every day. Even a little bit of nonadherence can allow their disease to get out of control, with serious health ramifications. But if they strictly adhere to their medication, the virus can be completely suppressed.

  So, what do you think? Could a compassionate connection between a patient and their health care provider have a meaningful effect on HIV disease—a disease where patient adherence to therapy is especially vital to health outcomes? That’s precisely what researchers from Johns Hopkins University wanted to find out. Specifically, they wanted to learn what happens when patients believe that their health care provider knows them as a person.

  In a study of more than 1,700 patients with HIV, the researchers asked patients to respond “yes” or “no” to the question: “Does your HIV provider really know you as a person?”201 They tested the association between three things: being known as a person, adherence to medications, and viral load (which is the number of copies of HIV virus that is measurable in the blood).

  They tested this association because the viral load is the best indicator of whether or not a patient’s HIV disease is controlled. If the virus is completely suppressed, their viral load will be undetectable in the blood (i.e., no copies of the HIV virus can be found). They adjusted the analysis for a number of potentially confounding factors, so we can have confidence in the results. What they found was nothing short of astounding.

  When providers knew their HIV patients “as a person”, the patients had 33 percent higher odds of adherence to therapy and 20 percent higher odds of no detectable virus in the blood.

  Being known as a person was independently associated with 33 percent higher odds of adherence to antiretroviral therapy. But that’s not all; being known as a person was also independently associated with 20 percent higher odds of having no detectable HIV virus in the blood!

  Why? In Chapter 4, you were introduced to the concept of self-efficacy. That’s a patient’s belief that a treatment can be effective and that health goals can really be achieved. It’s a patient’s belief that a therapy not only will work, but also that they can adhere to the therapy and successfully complete the treatment.

  In the Johns Hopkins study, the researchers also measured patient self-efficacy. Specifically, they asked patients if they believed adherence to therapy could help them live longer. They found that patients who believed that their HIV provider knew them as a person also were more likely to believe that HIV medication could help them live longer. In fact, compared to patients who did not feel known as a person, the proportion of patients who believed the medications could help them live longer was 39 percent higher among those who said their health care provider knew them as a person.

  Those results on enhanced patient self-efficacy are corroborated in another study of patients with HIV conducted at the University of Virginia.202 In this one, researchers recorded medical interviews of 435 patients with HIV by 45 physicians in four different outpatient centers to examine the relationship between the amount of compassion the physicians expressed and their patients’ belief that they could successfully adhere to antiretroviral medication (i.e., self-efficacy). They found that, compared to patients of the physicians with the lowest compassion, patients of the physicians with the highest compassion had more than double the odds of believing that they could successfully adhere to the prescribed regimen.

  So, in short, a compassionate bond in which the health care provider really knows a patient as a person can help HIV-positive patients believe their medication will work so that they really do take their medicine and clear the virus from their bloodstream. This compassionate bond between the health care provider and the patient is like the “glue” that binds it all together: self-efficacy, better adherence, and better outcomes.

  But there’s one more important thing to note from the Johns Hopkins study: in addition to better adherence and clearing the virus from the blood more effectively, being known as a person was also associated with HIV patients reporting higher scores for quality of life!

  Wendy’s Story

  This improvement in quality of life was just the experience of Wendy, a transgender woman who was diagnosed with HIV many years ago.

  Wendy experienced a tremendous amount of pain in her life. In transitioning from male to female, her family disowned her. To escape the pain of rejection, she moved from her home in California to the East Coast, but again she was treated very cruelly by many people who did not accept her.

  Wendy even felt a lack of acceptance from her HIV health care providers who would often, very carelessly, refer to her as “he” when speaking to other staff members in the clinic. It cut her to the core every time it happened. As a result, Wendy did not feel connected to any provider, and she had no consistency in her HIV care. She must have seen dozens of different providers in different HIV clinics over the years.

  The disrespectful way in which she was often treated in the clinic affected her behavior. It would not be unusual for her to act out in a disruptive manner in the waiting room if she felt that she had to wait too long. As a result, she was labeled as a “difficult” patient. She also didn’t really believe that HIV medications could help her. For many, many years her viral load was sky high–totally out of control.

  That’s when Wendy came to Cooper University Health Care, where she met Dr. John Baxter. Dr. Baxter is the head of the Division of Infectious Diseases at Cooper. In addition to being known as a world-class researcher—where he has played a big role in some of the most important clinical trials in the field of HIV treatment—and an exceptional physician, Dr. Baxter is also known for his compassion. He cares deeply about his patients, and he has a special way of making patients feel that extra care.

  The first thing that Dr. Baxter did was to listen to Wendy’s story. He could tell that she was going through tremendous pain in the midst of her gender transition. He met her in her pain with compassion. He demonstrated the utmost respect to protect her dignity.

&
nbsp; Dr. Baxter knew that always referring to her as “she” and acknowledging her female gender was the most basic, fundamental sign of respect and the first step in knowing Wendy as a person rather than just a “patient with HIV.” He insisted that every single person working in the clinic do the same.

  He knew that without ensuring this very basic expression of compassion, meaningful change in controlling Wendy’s disease would not be possible. He made a point of setting the tone in the clinic and made sure that everyone interacting with Wendy treated her with the compassion and respect that she deserved.

  The compassion from Dr. Baxter was something Wendy had never experienced in her prior health care encounters. It boosted her self-esteem in a major way. She was so thankful for him that her behavior completely turned around.

  Wendy went from being labeled as a difficult patient who might act out in the waiting room to a patient who could not stop singing the praises of her physician. She would (very loudly) tell everyone in the waiting room how wonderful Dr. Baxter was. It was a remarkable change.

  But that’s not all. Wendy knew that Dr. Baxter cared deeply about controlling her HIV. He wanted her to live a long and healthy life, and that outcome was possible with strict adherence to state-of-the-art medications. Then he convinced Wendy that it was possible, and she believed him.